Nicole Glesener

Saturday, December 3, 2011
All in all it has been a quiet 4 weeks since I last updated my site. Nice…very nice. The last few days, I have actually felt the best I have in a very long time…I am truly enjoying the progress. I still have some recovering from everything I experienced the past few months, my energy is not quite back to normal, I still have stomach issues and some pain, but I am taking little steps towards feeling back to myself. I cannot ask for more…I am truly grateful for what I have accomplished so far.

I was able to go in to the University of Minnesota on Friday, November 18 for my long awaited 2-year-post- transplant labs, skeletal survey and bone marrow biopsy and then visited with Dr. McGlave, my transplant doctor, on Wednesday, November 30 for results. The feedback from Dr. McGlave was “there are NO active myeloma cells in your bone marrow”. So, this means my cancer remains in remission and is not detectable in my body. This was the best news I could have received and this means I will be allowed to start the next part of my journey into kidney transplantation. Dr. McGlave stated there is no reason why I should not be allowed to move forward pursuing a kidney and he was going to send a full report of support to the transplant program at Abbot on my behalf. Nice…very nice. I am sure you can only imagine I was walking on cloud nine when I heard all of this. I cannot even begin to tell you what this means to me…and how very excited I am to actually get the ball rolling on this process. Could dialysis actually be a thing of the past for me…indeed it could be, and very soon! Unbelievable! I also received the final set of vaccinations, aka baby shots, which equaled nine shots, four in the left arm and five in the right. Not fun, but necessary and now complete. The other news I received was that now that I passed my 2-year-post-transplant tests and exam, I am no longer followed at the University as a transplant patient…the only time I would go back is when my cancer becomes active again and I would be facing another transplant. So this visit truly closed a chapter of my journey that has taken me so far…it is amazing looking back to where I was to where I am now. Simply, it makes me smile.

So, as I move forward, I will be working with the kidney people at Abbott to get the ball rolling on transplant. As far as follow up with the myeloma, I will just see Dr. Bloom every 8-12 weeks and watch my labs. I still have issues with my red cells and platelets, so I will have a weekly CBC done to watch my levels and be transfused as needed. I will continue to have the neumega injection at the cancer center in Hutchinson on Monday, Wednesday and Fridays to keep my platelets at an acceptable level. I will also continue on dialysis at Hutchinson Dialysis three days a week until I can get into a home dialysis program and make that transition. And finally, it is my plan to return to work by February 2, 2012…as long as my health continues to improve and no more “bumps in the road” pop up.

Well, that is all I have to report. Thank you for the continued support, thoughts and prayers…I would not be where I am today without them!

Take care,
Nicole

Saturday, November 5, 2011

Home…what a great place to be. I was discharged from the hospital on Thursday afternoon about 3 p.m. to be able to go home to finish my recovery, which Dr. O’Leary made it very clear to me that I am weeks out from being fully healed and recovered. I have no problem taking it easy and resting as long as I can do it at home.

Moving forward, I will have a follow-up visits with Dr. O’Leary to make sure I continue to heal properly. I will see Dr. Gray at the dialysis center on Tuesday, to make sure my body continues to adjust to hemo dialysis. Dr. Bloom will continue to follow my weekly labs to watch my blood levels. I will continue on the neumega injections every Monday, Wednesday and Friday at the Cancer Center in Hutchinson to sustain and grow my platelet levels. So, all in all things are about the same as what they were before this…just that I have been taken off PD and put on hemo dialysis for good…(PD is now absolutely out of the question for me) and that my small intestines are now working like they are suppose to (which they figure they haven’t been right for at least 3 years). I will be receiving my dialysis treatments every Monday, Wednesday, and Friday at 5:30 am at the Dialysis Center in Hutchinson. It is my intention to eventually transfer to home hemo dialysis, which would allow me to do my treatments at home, on my time and have shorter more, frequent treatments that would help me feel better before and after treatments and to have a more liberal diet.

It was a long hospital stay, but it truly left me in a better place and I am so ecstatic to have the answers and truly be on the road to recovery. This has put my kidney transplant on hold another 6 months to a year, but I will just continue to take the steps to get me there again, which includes finally being able to reschedule my 2-year biopsy, labs and skeletal survey at the University of Minnesota. I am hoping that if everything is good with my 2-year appointment and my cancer remains in remission, I can still have prospective donors tested, and possibly have a donor in place, so when I am healed, both of us are ready to go to transplant. My goal is still to have a kidney transplant, no matter how many obstacles or “bumps in the road” I have. I will continue to overcome whatever challenge are presented to me and one day I will be transplanted, so I can live a life off from machines and experience the the freedom of having working organs again. Yes, I will still have cancer and all the blood problems that have come with the cancer, but to have working kidneys will be a priceless gift.

I appreciate all the well wishes, thoughts, prayers, meals and cards that have been sent to me and my family during this difficult time. I am feeling confident that I will be home for a long time and the doctors have me figured out and pointed in the right direction to a complete recovery. Once again, your support means so much to us.

Take care,
Nicole

Monday, October 31, 2011

I am still in the hospital at Abbott and I am thinking I will be here for at least the next week. The surgery I had last Tuesday, October 25, in the late afternoon was successful and I have been on the mend for the last week. It has been hard for me to find the strength and energy to update my site until today. I am finally not sleeping so much, and I have the energy to accomplish little tasks. I have been taking little steps all week since surgery. I spent Wednesday, October 26 and Thursday, October 27 in ICU for one-on-one, post-op care as well as for pain control and was given only ice chips to eat. I was then moved to the renal floor (the 4th floor, my home away from home) in the early evening, Thursday, October 27 and keep on my ice chip diet. Friday, October 28, I was placed on a liquid diet which I could eat jello, broth, popcycles, and drink water, coffee, tea, etc. On Saturday, October 29, the ng tube I had placed after surgery to empty my small intestine was removed (thank goodness!) and they placed me on a full liquid diet, which includes all the clear liquids plus milk, hot chocolate, cream soups, pudding, ice cream, oatmeal, etc. I have done well with keeping the food and liquids in, as long as I eat and drink in a up-right, sitting-up position. It is most comfortable for me with the abdominal pain to lay on my back with my head elevated slightly, and it is very uncomfortable for me to sit up. But I found if I try to eat or drink when I am in a comfortable position for my abdomen, I no more then take in food or fluid and I vomit them right back up. This has been a hard thing to manage. I do remain on TPN (IV nutrition), so I am getting plenty of nutrition that I need. I am confident, that as I heal, this will improve as well. I have also weaned off from the IV pain meds and transitioned to patch and pill form that I will go home on. I think I am making very good progress considering the major surgery I had and how serious of a condition I developed. I am truly hoping I will be home by the end of the week. I have been in the hospital since September 23…visiting home twice for five days at a time. Simply stated, I miss home.

As far as the surgery and condition that they found was causing the sickness in my small intestine. Dr. O’Leary is so pleased with the outcome of surgery. He stated my body was growing a membrane around my small intestine which caused unhealthy tissue to grow on small intestine, which also caused my bowel to twist and obstruct. This condition is called peritoneal encapsulation and it is caused by peritoneal dialysis as well as peritonitis. When Dr. O’Leary opened me up, he was able to go in and take out the one of the really bad parts of my small intestine, which was wrapped in the membrane. He walked this to the lab, the lab determined that beyond the membrane and diseased tissue, the rest of it was healthy tissue. Dr. O’Leary stated he all in all he removed about 9 inches of damaged bowel and fixed the obstruction, which was being caused by twisted bowels. So after untangling, untwisting, removing bad tissues and the unneeded membrane, he was able to use all the good small intestine and put me back together again.

Now, I will be left to heal from the surgery. I have also been taken off from peritoneal dialysis, long term, so it is a blessing I had the fistula placed…I am now a hemo-dialysis patient until I can be transplanted, peritoneal dialysis is no longer an option for me. In addition, Dr. Bloom just stopped in and stated he will be starting me on a drug called tamoxifen to help me heal from the peritoneal encapsulation. This will actually replace the estrogen therapy I am on to thicken my blood as well. Dr. Bloom stated peritoneal encapsulation is a very rare condition and treatment after surgery includes treatment with one of two drgs possibilities…tamoxifen or thalidomide. Ironically, thalidomide is also a treatment for multiple myeloma, an oral chemo that Revelmid (the chemo I was on for my myeloma) came from. I am not able to be on thalidomide because of my low blood/platelet levels.

I hope, I hope next time I write, it will be to share how I finished my hospital stay and that I arrived safely back home…and I hope that will be by week’s end! Thanks for checking in.

Take care,
Nicole

Tuesday, October, 25, 2011

Well, today, I am finally able to have enough energy to getting an update on my site. I have been meaning to do this for the past 5-6 days, but I honestly have not had the energy to do so. Last week, on Monday, I had the second upper endoscopy to re-biopsy some spots they found during the first one. I also had an colonoscopy done the same day to look at the bottom half of my of my small intestine as well as biopsy any spot that did not look. Between the two procedures, I had four tissue samples taken for biopsy and they all came back negative for everything they looked for…this is a great result to get. The GI Specialist also reported that the health internally also looked great, so no problems internally with my small intestine. So, with that, they excused me from the hospital on Thursday, to go home and spend some time with my family. My surgeon was also out for the remainder of the week, and I was receiving no treatment, so it made no sense to lay in the hospital. I was discharged Thursday afternoon to go home for the weekend, with orders to contact Dr. O’Leary on Monday for the plan of where we are going next. The weekend was hard and things did not improve with me. I was sent home on nutrition, which is very hard on my body. I spent a lot of the weekend in bed, sleeping. The pain continued and I probably was more nauseated than I was in the hospital, just because I did not have access to the anti-nausea meds. So, when I spoke with Dr. O’Leary on Monday morning, he said, it is time for the next step, which is to go in surgically, to get a biopsy of the “diseased” intestine, and a possible resection of the bowel…this the extent of surgery will not be known until he gets in there and starts to explore. I am actually schedule to go in in the next 20-40 minutes. I am nervous, but again I am ready to feel better. I will be going to the ICU after surgery and staying there until tomorrow. After the ICU, I will be transferred to the fourth floor, my home away from home until I can go to my real home.

So, with that, I will post something when I wake up and have the energy to do so.

Take Care!
Nicole

Monday, October 17, 2011

As the week progressed last week, and more doctors got involved with my case, it was decided that I would have an upper endoscopy done last Thursday to look at and biopsy the inside of my esophagus, stomach, and the top two sections of my small intestine. I am so pleased to be able to share that results of all of the biopsies taken during the endoscopy came back healthy and nothing abnormal found. The GI doctor also noted the tissue he observed internally of the top two portions of the small intestine was healthy and strong. So, with the good news that internally, everything looks great, doesn’t leave any answers to what is going on. I remained in the hospital over the weekend to continue to recover from the surgery and receive IV nutrition, since I cannot eat.

Today, Monday, October 17, I have been scheduled for a colonoscopy to look at the bottom half of my small intestine and to biopsy the bottom half of my intestine (on the inside of my small intestine).It is the lower half of my small intestine that looked so unhealthy from the outside. This will help them decide if it will be safe to go in laparoscopic again to biopsy the outside of the small intestine where the spots of concern are. They said the results of the biopsies taken today should be back by Tuesday, so I am hoping that they will put an action plan in motion to take care of the issue of the unhealthy tissues on the outside of my small intestine and get me home. I will be here 3 weeks Wednesday, so I am really ready for some answers, resolution, and being sent home. This hospital stay is really starting to ware on my family.

Take Care,
Nicole

Wednesday, October 12, 2011

Celebrating my second anniversary of my stem cell transplant did not go as expected, as I spent it in the hospital at Abbott with another possible bowel obstruction. I was admitted to Abbott on Tuesday, October 4 after visiting with my primary for a follow-up to my hospitalization on September 23-29. After I was discharged on September 29 and returned home, I never felt quite healed. Dr. McGinnis, my primary in Hutch, consulted with the doctors at Abbott and decided it was best for me to be admitted at Abbott again. Most of last week was spent doing diagnostic tests, until nothing was conclusive. They finally decided to do a diagnostic laparoscopy on Monday. So I had minor surgery so that Dr. O’Leary, my surgeon, could go in with his scope and see exactly what is going on with my small bowel.

This is what I know so far, from the surgery I had to explore the bowel obstruction. The surgeon found infection in my small bowel, more than likely being caused by the high dose Melphalan I received on October 6, 2009 during my stem cell transplant. It is the infection in my small bowel that has been the underlying cause to all my stomach issues over the last two years. The doctors (internal medicine, oncology, nephrology, gastroenterology, infection control doctors) are working very hard on deciding a treatment plan…how to go about treating the infected part of my small bowel. There is also one spot on the small bowel that they would like to biopsy, but they are unsure how to get at it. So while this team of doctors decide the best way to approach this, I have been taken off from PD indefinitely and put on hemo dialysis, which thankfully has been a fairly smooth transition so far because I had the fistula (permanent hemo dialysis access) placed in my arm this summer. I will also have to have a central line placed in my neck/shoulder area this afternoon because my protein levels are critically low and I need nutrition ASAP. This is the only option I have to receive nutrition is through IV feedings. They have put me on a clear liquid only diet because they want my bowels to rest…and I am not getting enough nutrition with water, ice, broth, juice, or jello. So, I believe I will be detained at Abbott until the treatment for the infected portion of the small bowel is decided, my protein levels increase, and they decide how to biopsy that spot in my bowel.

Because of all of this, I was not able to have my biopsy, labs or skeletal scan done at the University for my two-year anniversary of my SCT. I am disappointed because this puts a hold on anything with my kidney transplant, but Dr. Bloom has reassured me that this needs to be fixed before I even think about a kidney transplant. Just a little delay…I have waited this long, so what is a delay? As soon as this new issue is under control, I will get all my 2-year labs, biopsy, and x-rays rescheduled at the University, and move forward. I have to think, it is better late than never.

This too, is just another bump in the road and that will pass. I wish it would have came at a different time, but it happened, now we will deal with it and move forward. This too shall pass.

I will update when I know more. Thank you all once again for all the thoughts and prayers!

Take care,
Nicole

Sunday, October 2, 2011
I find myself grateful to be home from Abbott again after a week’s hospital stay…this time for a bowel obstruction. The last couple of months have been so stable and so quiet that I have not had any reason to update my site…it has been wonderful! The injection Dr. Bloom started me on in July, Neumega, has done wonders for keeping my platelet levels at a stable level…hovering in the 20,000-30,000 range. Still low, but high enough to avoid the frequent transfusions I was receiving and keeping the kidney transplant program at Abbott happy, allowing me to still be considered for transplant if my cancer remains in remission when I get to my 2-year anniversary of remission on October 10, 2011. The injections still cause me to me to have uncomfortable side effects, like muscle pain, joint pain, water retention, swelling, neuropathy, but are being managed that I will continue moving forward…it is the best that can be done.

So, last week when I started feeling sick, needless to say I was a little surprised and of course, I waited until I was in excruciating pain before seeking help at the local ER. Actually, when I was transferred to Abbott again, I thought I would be admitted for another bout of peritonitis. Again, this gives me another reason to be grateful…because if it would have been peritonitis, my PD catheter would have been removed and I would have been placed on hemodialysis, (using the fistula that was placed in my arms in July, barely mature enough for use) a transition I prefer not to face being so close to being eligible for a kidney transplant. Once the surgeon found the obstruction, he decided it was in my best interest to avoid surgery because of my low platelets, low white count, risk of infection with the PD catheter, and the scar tissue in that area of my body caused by past infections, dialysis and past surgeries. He stated it was in my best interest to have an ng tube placed in my nose, down the back of my throat, into my abdominal cavity to release all the toxins causing the blockage and let the blockage open on its own. Saturday morning they placed ng tube and I waited…a procedure I do not recommend and a procedure that rank as one of the worse I have received so far. They also had me do a hemo dialysis run on Saturday because when I was admitted my potassium was so high that my heart was in danger and the meds they gave me to get the potassium to lower and the PD were taking too long. Saturday was not a good day, I was very sick…too sick to do anything, contact anyone, even talking with doctors and nurses proved difficult…I was pretty much out of it for most of the day. Sunday was a little better, at least I was able to communicate and spend a couple of hours awake. Monday morning came, and the surgeon sent me down to have contrast put in the ng tube and to have a series of x rays taken every 30 minutes to watch how the contrast moved through my body. By 8:30 Monday night, the blockage opened on its own…thank goodness! The contrast did the trick. They waited until about 2 a.m. on Tuesday morning before taking out the ng tube and lifting my nothing to eat or drink by mouth restriction…which allowed me a class of ice water…YUMMY, which was the best ice and water I have ever had! The surgeon visited me Tuesday morning and said it was ok to start to advance my diet slowly. I had nothing by mouth since Friday at lunch, except for a few ice chips and the class of water, so jello and broth were pretty darn good. I was also bedridden since the placement of the ng tube because I only had about 3 feet of line. It was a long few days. I stayed in the hospital until Thursday afternoon as they wanted to watch and make sure everything stayed open and the pain stayed in control. I was discharged Thursday afternoon and got home Thursday evening, but have not fell well until today. The doctors suggested I stay in the hospital over the weekend to continue to recover and to make sure my pain was subsiding; now I wished I would have listened to them. I definitely was not ready to come back home and took huge steps backwards on Friday and Saturday, but fortunately after staying pretty much in bed for the last two days, I was feeling more myself today and was able to get some things done and spend some time with my kids.

I am finding it increasingly more difficult to go into the hospital and stay there as the doctors suggest. It took me so long to go in and seek help because the kids had so much going on, which I didn’t want to miss…especially Tristan’s 16th birthday on September 22, which he also had his driver exam scheduled. There was no way I was going to miss the very milestone I was so afraid of not seeing when I was told I had an incurable cancer. So, I made it to his birthday, and to his driver’s test and to see him pull out of the driveway to drive himself and Talea to school for the first time on Friday morning. Bitter-sweet moment…so happy to see my son take a huge first step of growing into a young man, making so happy to have defeating this cancer (for now) and to be here for my kids, but yet a moment of sadness to have to let go of him…knowing I have to let him spread his wings and start step out into the world on his own, behind his own steering wheel. I found myself feeling the urgency to get back home as the week in the hospital went on and I started to improve and knew I was out of danger. Being in the hospital for 6 straight days without seeing my kids, was brutal (I did have very special visitors in Andi Upin on Sunday morning and my in-laws on Monday afternoon was so needed and appreciate, THANK YOU all!!!) and I could sense everyone at home was feeling a lot of stress without my support…I felt like I needed to get home as soon as it was possible to make things better for everyone…to pick up the pieces. I was feeling so guilty for leaving them yet again. Tristan also had another milestone that I didn’t want to miss out on, his first homecoming dance, which is girlfriend Bailie was accompanying him to. Of course, I did not get his suit purchased by the time I went into the hospital, so I needed to get out to taking him shopping as well. So, I did push myself to be discharged so I could get to a shopping center Thursday evening to get him a suit and tie. I was home too to see him whisk his beautiful date away to their first real dinner and evening together. What an awesome experience for a mom! I will post a picture or two under the photo section…this mom is proud of her son! The extra suffering was worth it in the end.

Moving forward, I will continue to receive the neumega injections and monitor my platelets. My platelet levels are doing ok again, but will confirm this tomorrow (Monday, October 3) when I go in for labs. Last week when I was in the hospital, they dropped all the way down to 17,000 by Tuesday because of the ng tube causing my nose to bleed and because of the hemodialysis run I had on Saturday. Dr. Bloom actually allowed me to be transfused…first transfusion since July. After the transfusion, my platelets bumped all the way up to 70,000. Unfortunately, the jump was short lived and they dropped down to 54,000 Wednesday and 30,000 by Thursday before leaving the hospital. I was too sick to get myself to the Cancer Center in Hutchinson on Friday morning, so I did not get my neumega injection. I am sure missing the injection was not good, so I am sure if my platelets dropped too low, Dr. Bloom will order increased injections next week to get them where they need to be…which means added side effects, YUCKY! Again, I am grateful that I have a treatment that is helping my platelets, besides having to be transfused all the time. Looking to the end of this week (Friday, October 7) I have my bone marrow biopsy, labs, and x rays scheduled at the University of Minnesota for my 2-year anniversary of remission. I will then return to the University next week Wednesday, to meet with my transplant team about the results. It is my hope then I will be taking some steps toward kidney transplant the following week. It is almost surreal that I am almost there.

While I was in the hospital last week, the internal specialist assigned to my case, was also doing some mentorship to student doctors from the University of Minnesota and he approached me on Wednesday when I more stable to see if I would be willing to help in training this future doctor because I had such a significant history. He asked if I would be willing to sit down with her so she could role play admitting me and taking my history and taking my initial information. I told him I was more than happy to use my conditions to help people. It’s kinda funny, I just never know how I can use these awful diseases to do good with. So Wednesday afternoon, I spent the afternoon with a 2nd-year med student while she collected her first history and role played admitted her first patient. Pretty cool for me…I was able to help and pass time with interacting with someone!

I am hoping next time I update this site it will be with news about my cancer remaining in remission and information about a kidney transplant…maybe even reporting that I found a match and a date has been set. Wouldn’t that be something? I truly believe in miracles and truly believe anything can happen.

Take care,
Nicole

August 8, 2011
What a wonderful turn out at Relay for Life 2011. What always amazes me at Relay is realizing how many people are touched by cancer. When I walk the path for the first time from beginning to end and see the number of luminaries with name after name, my breath is just taken away and the goose bumps fill my arms, just realizing how many people are affected by this one disease. Relay to me is truly a celebration of not only all those who have fought and loss the battle but those who are still fighting to live each day…to be here today as well as in the future, until we do not have to relay anymore…until there is a cure. I had a wonderful afternoon and night surrounded by my family and friends, with my team Believe in a Cure-Nicole’s Hope. We all worked hard, but had fun doing it and shared lots of laughs, raising money and awareness for cancer and the American Cancer Society. Many people asked me to post a transcript of my speech on my web page, so here it is:

I am honored to be asked to share my cancer journey with you this year.

I was diagnosed with Multiple Myeloma in January 2009 when I was 33 years old. I do not fit the mold for the typical individual that gets this type of cancer-it generally strikes males older than 65 of African American decent. I am none of those things, but it still happened to me. As many of you know and experienced, any cancer can attack anyone at anytime, cancer does not care who you are, it happens with little or no warning, changing your life forever. I stand before you as proof of that, as many of you are proof of that as well. I was one of the 20,000 people diagnosed each year with Multiple Myeloma, and I refuse to be one of 10,000 people silenced by this incurable cancer of the plasma cells.

I was “healthy” until my kidneys failed on December 12, 2008. Even when I was in kidney failure, which was detected when my primary care doctor did labs and they came back off the charts and sent to Abbott, I was not feeling that sick…a little tired, weak, and fluish. When I first spoke with the doctors at Abbott, I kept on telling them I don’t feel that sick, and I really need to get home to my kids as I have never been away from them. The doctors were very straight with me and told me that they had no idea how I could still be alert and coherent to be talking with them and that I would have to be in the hospital a long time so they could figure this out. That was hard for me to swallow. But even at that point, I never felt like any of this would take break me down, or take me way…I decided then and there I would do whatever it takes to fix this kidney problem and get home. After being assessed in the ER at Abbott, I was transferred to the heart unit. I was taken there first because my potassium was so high, that my heart was in danger. Once my heart was stabilized, I was taken to radiology and had a perm cath placed neck to dialysis could be started, to get the rest of the poisons out of my body. My first hospital stay lasted two weeks, with time spend searching for reasons why my kidneys would fail-the doctors tested me for everything from lupus to diabetes to having too much ibuprofen in my body. As time passed, each test did not provided any answers, the doctors understood why I wanted to make it home for Christmas and they let me go home by Christmas eve. They day I was discharged; I met my oncologist, Dr. Stuart Bloom, for the first time. He gave me a crash course on oncology, cancer, most specifically Multiple Myeloma. He shared with me that I would have to return to the hospital after the Christmas to have a Bone Marrow Biopsy, which was necessary to rule out Multiple Myeloma. Dr. Bloom has a gift of making things seem ok…which made me enjoy Christmas even that much more that year and allowed me to go home without too much worry about having cancer. I returned for the biopsy on December 30, and returned to Dr. Bloom’s office on January 5, 2009 to find out the biopsy did not rule out cancer, it confirmed the multiple myeloma and my journey into the world of cancer began.

When I heard the word cancer, I stared at him in shock, then the tears slowly came. What flashes through your mind when you hear that news…well for me it was the thought of not seeing my children, Tristan and Talea, grow up, drive, date, graduate, go to college, get married, become parents-All their milestones. The thought of missing all the everyday, normal activities and my kids growing up and facing the world without a mom…what if I am not around, who will kiss them goodnight, say goodbye…have a great day, I love you…Nurture them, feed them-do all the “mom” things every child deserves.

Dr. Bloom looked at me, took my hands and told me Nicole, we will get you through this and our goal of treatment will be to make you live as long as possible and feel as well as possible. I have put together a care plan for you and I will treat you and your cancer like you are my wife or my daughter. His words, even though simple and to the point, wrapped around me and comforted me. To this day, when I think of his words, still provides me with the comfort, knowing he will take care of me and guide me in the right direction.

I am so fortunate to have found an excellent health care team to put me through the treatment for the Multiple Myeloma that has been so successful. The first thing that was done was to knock down the cancer well enough for response to a stem cell transplant for long-term-remission. That was done through two pills…one chemo called Revlimid and the other a steroid called Dexamthasone. I took those two pills for seven months-January 2009-July 2009, 21 days a month. I completed my work up process in June (weeks of testing to make sure all my body systems were strong enough to handle the stem cell transplant). I was scheduled to start the transplant on July 1, 2009 with high dose chemo, but found out that the oral chemo not only knocked the cancer so well out-I had a 97% reduction of cancer cells in my bone marrow, but it also knocked my platelets way too low, too low to move forward. I was sent home and taken off all treatment to wait for my platelets to recover. This took the summer, and by September I was ready to start again. I completed my second work up process. I passed all the testing and I was given the green light to move forward. I was admitted to the University on September 14, 2009, given my first dose of high dose chemo, Cytoxan, discharged after 2 days to my apartment. I visited the SCT clinic every day while I waited to for my counts to drop. When my counts were just right, went through a stem cell collection process, since I used my own cells. I was readmitted to the University on October 6, 2009 for another high dose chemo called Melphalan, which side effects were so much worse than the Cytoxan. I waited for counts to drop again.

On October 10 2009, I experienced the miracle of having my stem cells infused back into me. This is now a day each year that I celebrate my new birthday…a second birthday, that has given me a second chance at living a life with cancer that was now in remission. The transplant gave me the precious gift of time-time that can be used for research to develop new treatments to take steps to find a cure.

By far, the transplant and the transplant process were the most difficult and challenging part of my treatment for a few reasons. First challenge was moving to Minneapolis and leaving my family for months, when I had never been away from them before, except for the two week hospital stay in December. Next, it was so difficult because of the risks associated with the transplant itself and the unknowns of the transplant or the outcomes. To this day, the unknowns and the side effects of the transplant still present their challenges…just not knowing how long the cancer will stay in remission, and not knowing if I will catch it in time to start aggressive treatment again to extend my life again. It is my goal to keep on beating this disease so I can see my children grow and let me age into my elder years. Another reason the transplant was so difficult was the change in my appearance. For the first time since I was diagnosed, I looked like I had cancer…It wasn’t until I had the high-dose chemo that I lost my hair and I had to wear a mask because of my low counts and risk of infection. It wasn’t so much my appearance, that bothered me, as I never tried to hide my bald head with a wig, just wore hats and scarves for warmth and my family was so supportive with being in public with me when I had to wear this mask, just by walking next to me with their heads held high despite the stares and looks from the curious…you have no idea how much that meant to me and how their actions comforted me. But I just did not like the looks of pity…I hated being pitied, like I am sure others feel the same way. But I got to lose the mask after 100 days and my hair grew back in March. Honestly, when I have to do it all again, I will not change a thing…just maybe be more proud about the strength and courage I had to endure the treatment and feel more fortunate of the treatment I was able to receive.

As of now, I am grateful to tell you, my cancer is still in remission-22 months of remission. Studies have shown that taking a low dose of oral chemo makes a person’s remission last longer after stem cell transplant, but unfortunately, right now, my blood levels are too low to handle it. I do have some long term side effects, including low white counts causing me not to be able to fight off bacteria that cause many infections, especially PD infections, developing ITP, a condition that causes low platelets, that causes me to bruise easily, bleed spontaneously, uncontrollably, and internally; and low red counts that cause anemia…this is not only from the transplant, but also from the kidney failure. This journey has taken me down a road with some bumps along the way-many hospitalizations for infections, low blood, shingles, internal bleeding, swelling around the heart and lungs.

With each hospitalization, new challenges would present themselves, but with the new challenges I would become a stronger person, and learn to be thankful for all the good I have in my life. I would also see my family become stronger. One of the most difficult things about cancer is watching my kids dealing with some really hard lessons of life-things that they should never be asked to deal with at such young ages. But I have also seen both of them develop the most amazing coping skills and the ability to show so much compassion to anyone in need. They give me the strength to continue to move forward and hold on to the hope of a cure for this disease. I have learned that with each set back I have, there has been countless positive outcomes…and this has only made me enjoy life that much more and be thankful for all that I have.

Do I ask myself why this happened to me and my family, of course I did. But I decided long ago, I will never get an answer to the question why-so I need to look at this as a gift and do what I can with it. I need to make the most out of life,-love and enjoy life and the people in my life and live it to the fullest. This life I have now is far from perfect, but it is full of remarkable people that make it wonderful…and it makes me so grateful for what I have. The support and generosity of my friends and family has definitely gotten me through the challenges of having cancer and the treatment. I know I would not be where I am today without my loved ones help and support. I truly try to celebrate each day and I look forward to celebrating more days and successes in the future.

What does the future hold…nobody has the answer for that question….whether you have health challenges or not. I have learned is that you truly do not have control of some things and you need to remain positive and flexible and learn to go with it. So now that my cancer is in remission, I still see my oncologist every 6-8 weeks to keep an eye on things and I follow up with the university and the stem cell transplant team every 6 months. I am hoping for a kidney transplant after October 10, 2011, when I reach my two year anniversary of remission…a rule the transplant program has. Before I am considered for a kidney transplant, my low platelets need to be fixed. I have tried every treatment possible to help my platelets rebound, but they have all failed. There is one more medication available, an infusion called N-Plate, but it is too dangerous for me to take because of my history. I just began an injection called neumega, which I receive every day, that is used for people on chemo to prevent platelet loss…I have been on this for a couple of weeks and it seems like my decline in platelets have slowed. This injection is my last hope and if it does not work, it has been recommended that my spleen is removed. So, for now, I will give the neumega injections a fair try, and I go in every day for a blood test to watch my levels and if my platelets are below 20,000, I drive up to Abbott to be transfused with a unit or two of platelets. For while, my platelets were dropping below the limit every couple of days, so I was making 2-4 trips a week for platelets. My low platelets really became an issue back in April, after I woke up with a headache. Thankfully I was already in the hospital for low blood and low platelets, that my doctors and nurses acted quickly to the symptoms I was displaying, and sent me to have a CT scan, which detected a brain bleed. I was transferred me to the Neurological ICU, treated my bleed quickly, and I turned out fine. I remained in ICU for a few days for observation. Since then, my platelets have not been allowed to drop below 20,000 and I have to pay attention if I get any headache and get to Abbott immediately if I do get one. The real eye opener was when I was told if I would have been at home and went back to bed to try to rid myself of the headache, I would have not made it. This “bump” has by far been the scariest to deal with…and made me realize just how delicate life is. I am also being actively treated with neupogen, a growth hormone for white cells, to help my body fight against the number of infections I get…PD infections have been problematic and caused most of my hospitalizations. I also get blood transfusions every 3-4 weeks when my hemo drops below 7. This is a long-term side effect of the stem cell transplant and because of my kidney failure. I do give myself epogen injections, a growth hormone for red cells, every week, but my body does not respond completely to the drug.

When I look at all the problems I have, it is hard not to get overwhelmed and things can seem grim, but once I look at each one separately, I realize it’s not so bad and very attainable…I am can overcome these things and these things can be fixed. I just want to share with everyone, no matter what your challenges are, there is always hope for the future…Hope is one of the most important weapons we have to fight cancer. And attitude is everything. Never give up on what you want to achieve…and it can happen, it will happen.

I realize I have two huge challenges to overcome with getting pass the ITP and moving forward with a kidney transplant, but once these things are taken care of, it will just be the cancer to cure…which could happen…a cure could become a reality to me with the support that all of you give to the American Cancer Society and to the research and development of new treatments. Thank you for supporting the American Cancer Society and please continue to support this cause until we put an end to cancer and rid the world of all the sadness and pain it causes.

Thank you.
As for my platelet counts, I continue to go in each day to the Hutchinson Cancer Center (which is a satellite clinic of Minnesota Oncology, Dr. Bloom’s Practice) for an injection called Neumega. Last week, my platelets were actually up around 30,000, the highest they have been without being transfused in a very long time. Unfortunately, the upswing was short lived and by Friday morning they were tumbling down again and as of this morning, they are even lower at 24,000. I have not been able to connect with Dr. Bloom yet today to hear his opinion. I know Dr. Bloom has told me it may take a long time to see if this injection benefits me…I just have to remember the word patience…but sometimes it very hard for me to practice what I know is right…especially when it seems like these things take me on a rollercoaster ride. The side effects of this injection are yucky too…tons on muscle fatigue and weakness, bone and joint pain, achiness, fluid retention, low fevers, fatigue. I am not having the best time…but I am hoping it pays off in the end. Time will tell.

Thank you to everyone that came out to Relay to show your support and to hear my story. I was again embraced and surrounded by a tremendous number of people and such a large amount of support. Thank you.

Take care,
Nicole

Tuesday, July 12, 2011
I spent a week at Abbott again, June 22-29. Same old story, peritonitis caused the hospitalization, but this time the infection was caused by c-diff (a bacterial infection picked up from long hospital stays and repeated, long-term antibiotic use, which was me in April and May). I also had low blood and platelets upon being admitted. I stayed on IV antibiotics the week I was in hospital, and until they got the infection under control. They also gave me platelet transfusions and started me on neupogen to increase my white count, but my hemoglobin was not low enough to be transfused with blood (which I am more than ok with as it makes me nervous getting red cells after my brain bleed). When I was discharged I was sent home with inter-peritoneal antibiotics for the peritonitis and oral antibiotics to treat the c-diff, which I will be taking for two weeks. This is my first infection with the new catheter, but the renal doctors at Abbott are recommending, because I am getting reoccurring infections (which the low white count is not helping any) I need to transition to hemo dialysis permanently. They will let me run on peritoneal dialysis until I come down with another infection, which they are pretty confident, will happen once I am done with my course of antibiotics. I am hoping that it will not happen, but I am preparing myself in case it does. I will be educating myself about home hemo dialysis and do what I can to get set up on it, because it is my goal to not have to sit in the dialysis center long-term. Last week I had my hemo dialysis fistula placed in my left arm, so I do now have a very safe, permanent dialysis access. The fistula will take up to three months to heal and mature before it is ready for use, so I have a little bit of a waiting period. But it is in and on its way to be used.

My platelet counts continue to be a rollercoaster and I am still going to Abbott for transfusions 2-3 days a week. When I was in the hospital, I was told the N plate infusion treatment was definitely out of the question for me and it is not going to happen because my insurance will absolutely not approve it and the side effects are too dangerous for me because of my history. I did see Dr. Reding at the U of M on June 30th and after careful thought and reviewing my history, he is convinced it is ITP that is destroying my platelets and the best treatment for me to treat the ITP would be to remove my spleen. He told me that it has to ITP because if it was any other condition that causes platelets to be so critically low like mine, I would have not survived having low platelets for so long…ITP is the only condition that I could have this long and still be alive. He is also the doctor that explained how dangerous the side effects of the N Plate infusions would be to me and that my low platelet problem needs to be fixed sooner rather than later because of the risk I have with my body building up more antibodies against transfused platelets. He stated if my body starts producing more antibodies against the transfused platelets, I will not get the bumps in my platelet counts like I am getting now. He was going to talk with Dr. Bloom, Dr. Gray, and Dr. McGlave, to get them all on board with moving forward with a splenectomy. If I don’t hear anything from him by Thursday, I will be contacting his nurse coordinator to find out my next step. I also see Dr. Bloom today for my regularly scheduled check up, so I will get his opinion on this treatment.

I am busy getting ready for the American Cancer Society’s Relay for Life for McLeod County being held on August 5 and 6. I will be having a team this year again (Believe in a Cure-Nicole’s Hope) to raise money for the American Cancer Society and their efforts in fighting cancer and supporting those going through treatment for cancer. I am especially honored to be selected as the “Hope Speaker” of the event to tell of my cancer journey and shed light on how cancer has affected my life and the lives of those around me. I am truly looking forward to sharing my story and I am particularly excited to raise awareness of Multiple Myeloma…so many people do not know about this type of cancer. Please feel free to contact me (nglesener@hotmail.com or (320) 582-0232) if you would like to purchase a luminary for a $10 donation or make a monetary donation to the American Cancer Society. Also, Relay for Life is such a touching event and a wonderful celebration of lives lost and survivors of this awful disease, cancer…so if you have the opportunity to attend, please do…you will be touched!

Take care,
Nicole

Friday, June 10, 2011
Wow…I can’t believe it is already the 10th of June! Where does this time go? Unbelievable that is now officially summer and school is out. I am looking forward to spending time with Tristan and Talea this summer…I feel so fortunate (and spoiled) to have the opportunity to have the time with them.

The situation with my platelets remains the same and I am requiring transfusions twice weekly…usually Mondays and Fridays, which I am still traveling to Abbott for. I finished the steroid taper on June 3rd, so I have been off the dex for a week. My body is adjusting…the down side is the muscle aches and joint pain, but the up side is that my sleep is less interrupted. The transition back to PD has gone well. My BP is still adjusting, much easier to control on this type of dialysis, which I am very grateful for.

My appointment with Dr. Reding at the University of Minnesota was rescheduled for the end of June…he decided to hold his clinic later in the month. Hearing this was a huge disappointment to me…and out of my control. I was reminded that there are some things I can control and other things I can’t. It is what it is, so I will wait, what else can I do?

Take care,
Nicole

Thursday, May 19, 2011
Today, I made my first trip to Abbott today all week. My platelets did a great job holding out for just about a week…they were at 93,000 when I was discharged last Saturday and just today they tumbled to 20,000 (my minimum level). I am satisfied.

The dance recital. I made it back with 30 minutes to spare on Saturday to collect Talea from home and get her to the high school for her dance recital. It was a wonderful weekend…filled with making great memories with her. When I pulled into the driveway and she came out to the car, I could see the relief on her face. She looked awesome, taking care of styling her own hair and putting on her own makeup…for the first time. It was another proud mom moment, to say the least.

I am continuing on my taper off from the dexamethasone. I went from the high dose (40 mg) upon discharge on Saturday to 20 mg this week. Today I cut back to 8 mg and will take 8 mg for 4 days. I will then reduce to 4 mg for 4 days and finally be down to 2 mg for the final 4 days. I will be done with the steroid treatment on May 30th. This taper will lead me to my appointment with Dr. Mark Reding at the University of Minnesota on June 2nd…and finding out the next steps in treatment for my platelet disorder. So far, reducing the steroids has not been too bad, little muscle discomfort, but nothing like I experienced with taking so many to none. I am still not sleeping much, but I am sure that will improve as well.

My PD nurse will be visiting my home tomorrow morning to certify me to perform home dialysis in my home again. If all goes well with the visit, and I do not start bleeding again, I will be back on PD on Monday, May 23. This means my last hemo-dialysis treatment will be on Saturday, May 21. I am so excited to make the transition back to PD and to feel better on a daily bases…I am especially excited to get my blood pressures under control and lowered, alleviating a lot of my anxiety of developing a brain bleed again.

I will resume going in for daily lab draws tomorrow and just continue on doing what I am doing because it is working. I do not think I will have to go in for more platelets until early next week, so I am looking forward to having a weekend at home to put the finishing touches on the basement before the carpet is laid Monday evening. I know, that does not seem like much, but in my world, it is huge! Have a great weekend!

Take care,
Nicole

Saturday, May 14, 2011
An update on today. Dr. Johnson, a surgeon and partner of Dr. O’Leary just came into dialysis and rechecked my the ooze from where I am bleeding of on my belly button…I forgot to clarify that I am not bleeding out from the PD catheter, it is actually the incision that was made for the camera for the laparoscopic part of the PD placement. I am still oozing, despite the fact that my platelets are up to 93,000. She is going to be in momentarily to place a few stitches in this incision to make the bleeding stop…the cool thing is, is that she too was a dancer through her childhood and college, so she understands the importance of me wanting to be there for Talea. I am so fortunate to have doctors that understand life…wow I am lucky! I just spoke with Dr. Bloom on the phone and he too is on is way up here…thankfully, he is the on-call hospital doctor this weekend, so he has no choice but to take care of me He stated he is happy with my bump of platelets and he will not be giving me any more additional units. So he will visit with me to put in my discharge instructions, which will be low activity, follow up with Dr. Gray on transitioning to PD, daily CBC lab draws in Hutch to watch hemoglobin and platelets, and platelet/blood transfusions as needed, and of course watch for any signs or symptoms of a brain bleed and get to treatment asap with any headache. I also have to ask him the status of the appeal process of the N-Plate infusion. I will finish with dialysis at 11:30 a.m. and everyone knows my goal is to be on the road by 2:30 p.m. to get to the high school by 4 p.m…it will work out. Nephrology is also on their way to see me and I will just schedule my AV fistula consult and surgery through here…I feel better about that. Then the last doctor I will see is my attending doctor, Dr. Sandren. Great doctor that has been my attending in the past, so he is familiar with me and hopefully will make the discharge go very smoothly. It is also my last day of steroids today, so tomorrow I will begin the crash for four days. I will have to use the steroids to my advantage today, and be grateful, that is my on-steroid day, so I will not experience that fatigue and severe muscle pain I have non-steroids day…I think that will be easier to put in the mix tomorrow anyway.

Thanks for all the continued care and concern…it all means so very much to me!

Take care,
Nicole

Friday, May 13, 2011
Well, since I have the time now, as I am waiting in the ER at Abbott to be admitted, I thought I would get an update on my site…I have no cell phone service at where I am at, so no one knows what is happening.

I started bleeding from my surgical site last night at Talea’s dance recital rehearsal at the high school in Hutch. I didn’t even realize I was bleeding until Talea came to me when she was done and she pointed out that my white sweatshirt had a six-inch diameter circle of bright-red blood, which had soaked through two other layers I had on. I did my best to disguise my bleeding out, so save my daughter from embarrassment and got to my car. Staying as calm as possible, I called Dr. Bloom on his cell, which fortunately he immediately answered. Dr. Bloom went through a checklist of symptoms of more serious conditions…brain bleed or shock. I was actually feeling fine…just having the pain that I was having all week from the surgery, and now just the blood, that if Talea hadn’t pointed out I would have not noticed. Dr. Bloom advised me to apply pressure and ice. He stated to give it a couple of hours and if the bleeding did not clot, I should call him and report to the Abbott ER. By 10 p.m. last night, the bleed slowed to ooze, but it was not clotted. I decided to stay home, not to disrupt my family and just head to Abbott this morning after my daily blood test in Hutch. I thought that way, they would have a CBC to have a start with. I got up at 4 a.m. (can’t sleep because of the steroids, anyway), showered, got ready, and packed my suitcase. Loaded my car with all my necessities for a short hospital stay, spent time with Tristan and Talea, and prepped them on how the day would play out and kissed them goodbye and send them off to school…It is so important for me to keep their lives as normal and as stable as possible. I had my lab drawn in Hutch at 8 a.m. and immediately left for Minneapolis after a quick poke. I did have an appointment schedule at 9 a.m. in St. Louis Park with my PD nurse, to do a catheter flush to prepare me for returning to PD (home dialysis) on Monday. I arrive to her office about 9:40 a.m. When she flushed my catheter, I had a lot of bright red blood that came out…which probably means internal bleeding from the surgery. She wanted to call the ambulance to transport the rest of the way to Abbott, but really, I told her beside the pain and the physical blood, I felt fine. I told her I would just prefer to drive, that way, I have my car where I need it and I am able to come home immediately and no one will have to hassle with coming up here to get me. While, I was at Vicki’s office, I called Dr. Bloom with my CBC results that the medical center called me with about 10 a.m. My platelets were at 23,000 and my hemoglobin at 8.1, I also told him I was still bleeding. He simply told me to get to Abbott immediately…check in through the ER. I needed platelets fast and a CT scan to see how extensive the bleeding is. After Vicki finished flushing my PD cath, I headed to Abbott. I arrived around 11 a.m. so far, they have done a chest x-ray, and a CT scan and given me a unit of platelets. It looks as though I will be staying the night to get more platelets to get the bleeding to stop. There is also some bleeding internally that showed in the CT scan, so I will be consulting with the surgeon, Dr. O’Leary, to see if there is any surgically that should be done. I hope not! My hope is that I can be pumped up full of platelets to stop the bleeding and continue to heal. I have told them I do not wish to have a blood transfusion to get my hemoglobin up, because it is not low enough yet. They always have me get down closer to a hemoglobin of 7, any other time. And last time I had blood and low platelets and I was transfused with 3 units of blood and 2 units of platelets, I ended up in the ICU with a brain bleed…I really don’t want to go there again. Everyone taking care of me here understands I WANT to be back to Hutchinson by tomorrow afternoon at 4 p.m. for Talea’s dance recital. They understand the importance to me to be there for her…I have never missed her recitals…nine years of dancing. I also explained that this was not only important for me to there for her, but this month has been so stressful on Talea, with the ups and downs of me being in and out of the hospital and away so much…I just do not want to let her down again and risk hurting her again. She is at such a volatile age, and at a volatile stage in her life that it is so important to me to be there for her and keep her life as normal as possible. Unfortunately, I also missed my consult with the vein surgeon at the Vascular Center in New Brighton today for my fistula, my permanent hemodialysis catheter. I will have it rescheduled and actually I will just reschedule it through Abbott…so if I run into problems with platelets and that surgery, I am where I belong and with Dr. Bloom and the team of doctors that are so familiar with me.

As of right now, I have been moved to the Admit/Discharge unit on the 4th floor…a “waiting” hospital room, if you will, a place for me to hang out in until a room in the unit opens up. I will eventually be moved to station East 4100, the renal unit, and my home away from home. I will keep updates posted as I move forward.

Thanks for the care and concern!

Take care,
Nicole

Wednesday, May 11, 2011
It is absolutely gorgeous out this evening. I am sitting on my yard swing , outside in the sunshine, making this week’s update…it is amazing what a little sunshine and warm weather does for a person. I hope this weather stays for the next six months…at least six months, but it is always welcome to stay longer! The other reason it was an absolutely gorgeous day was that I took the opportunity to attend the year-end retirement party at the college. It was absolutely wonderful to visit with my Ridgewater family…to spend time to laugh with them and catch up. My heart aches with sadness not being there. I know it is not right for me to work now, but I do miss my job and all my coworkers…the laughter, the joy, even the stress, busyness and hustle and bustle. It is still hard for me to see another person in “Nicole’s Area”…I know get over it…life will move forward! Right now I have bigger fish to fry…and I know it is just not reality for me to think about working…it would not be right for Ridgewater and not right for me. Right now, I know I have to be patient and let life take me to the right place…I will end up in the right place…it is fate.

My life has been busy in the last week. I spent an enjoyable weekend with my daughter, Talea, at her dance competition in Eden Prairie, Friday-Sunday. Her weekend started by getting a “bonus” day off from school mid-morning Friday to accompany me to Abbott for a fresh transfusion of platelets to get me through the weekend safely. I reminder her to see the silver lining of having a sick mom…as if it wasn’t for my cruddy blood, she would have been at school all day…life if not so bad after all She danced Friday night with her group, and did absolutely fabulous. It is so awesome to see the improvement year after year of each girl in her group. Most of them have been dancing together since they have been 3-year-olds…so you can only imagine how special it is to see how they have grown, not only as individuals, but together as a team as well. Saturday, we hung out the hotel for the morning and then went and spent the day at the Mall of America…I would take Talea shopping there a lot when I was living in the cities going through my stem cell transplant. It was fun to spend the day with her, not being a rush, just relaxing and doing something we enjoy together…shopping and looking for bargains! Saturday night we returned to the competition so she could perform her solo. She ended up being the last performance of the whole competition, closing out the show to her song entitled “Goodbye”. This was her first year or time ever performing a solo, and she was absolutely stunning and beautiful. As I watched her, I realized how much my little girl, has grown up into a beautiful, young lady…I have been so fortunate to be here to experience the many milestones that have flown by over the past few years. It was a bitter-sweet moment…of course, much more sweet than bitter. I couldn’t help but feel so much more than grateful that I am still here…beating the odds and so thankful I have the winning score over the cancer and my doctors have the knowledge and skill to provide me with the treatment to keep the edge over the other things that ail me. I do not feel defeated in anyway…in fact, it gave me the strength to keep on hitting the challenges head on for years to come. We returned home on Sunday morning…I was exhausted…Talea was as well, but she had a smile that filled her face and an arm full of trophies and ribbons from her weekend’s accomplishments. She also had stories, experiences and new memories to fill her facebook page and share with her family and friends. This is what life is about! PS I placed a few pictures of her dancing her solo under the family gallery tab.

I was fortunate to have the weekend off from hospitals, labs, blood test, platelet transfusions, doctor talk, dialysis, etc…it was almost too normal, that it seemed scary. I was feeling pretty sick by Tuesday, when it was time for dialysis again. Because of the dance competition, I last ran on dialysis on Friday and skipped Saturday’s treatment, so avoid driving back to Hutch. By Tuesday, I was feeling really sick, fatigued, itchy, and having hard time breathing. I was relieved when I finally got to my dialysis treatment on Tuesday afternoon (there is a story to that too). Monday, I was scheduled to have surgery at the North Memorial Ambulatory Surgery Center in Maple Grove for my PD catheter replaced to get me back on peritoneal dialysis at home. After a scheduling snafu with my platelet transfusion, I was able to get transfused with platelets about 3:30 p.m. and have surgery at 4 p.m. next door at the Maple Grove Hospital (my surgery was originally scheduled for 12 p.m.). I was then in recovery until about 6 p.m. and they sent in a post-op blood test to check my hemoglobin and platelets. When the blood test came back, they discovered that my hemoglobin dropped from 10 to 8.5, which was a cause of concern. But the good, was my platelets jumped all the way up to 89,000 after two transfusions. Dr. Kern, my surgeon, asked me to spend the night in the hospital to keep a close watch on me and my blood levels. I was also in excruciating pain. This would allow me to have IV pain meds to keep me more comfortable. He stated if my hemoglobin stabilized and my pain mellowed out, I could go home right away on Tuesday. I was hard for me to agree, but after just experiencing a brain bleed that happened so unexpected, I swallowed my pride and knew what was best for me, and agreed to be admitted. My hemoglobin remained stable overnight and the following morning. My pain improved to a tolerable level as well. Dr. Kern was in to see me right away the Tuesday morning with my blood test result and to see how I was doing. He also stated he got a hold of Dr. Gray to get my dialysis orders, so I could have dialysis in the hospital before I went home. I waited patiently until noon for the dialysis company to arrive to perform my treatment…and no luck. I called my nurse to find out what going on. After she investigated, she told me the company would not be there until 2 or 3 p.m. This was a problem for me…I have a three-hour treatment prescription and I am on dialysis for up to 4-hours. I arranged for my step-dad to drive all the way from Olivia to drive me home and he had an appointment he needed to back to Olivia for by 5 p.m. So, this is where I am grateful to have wonderful, supportive doctors…I called Dr. Gray (my nephrologists) and explained the situation. He understood I need dialysis asap, since I was a day behind and he agreed it would be faster to run dialysis in Hutch. He called and got me in to Hutch. I was able to run half my treatment Tuesday afternoon, but I had to run my other half this morning because there was not enough time for me to stay on for 3-hours on Tuesday. This whole situation reminded me that I truly need to be my best advocate, I have to remain as tolerant as possible and simply go with the flow, but yet be assertive and state exactly what your needs are…it is just the way it is. But…here is my silver lining to my short hospital stay this week…PD catheter is in and healing so that means just two more in center hemo dialysis treatments…Thursday and Saturday. I will return to peritoneal dialysis at home on Monday evening…agony that paid off big to me in the end.

My platelets continue to be the same…they jumped up to 89,000 for a short time on Monday after being transfused, but were down to 52,000 by this morning. Dr. Bloom tried to change me over to Prednisone, a different steroid prescribed a little differently, but in the same class as the dexamethasone, hoping to alleviate some of the side effects I am suffering from on the non-steroid days. But actually the side effects I got from the Prednisone, were much more unbearable than the muscle pain I get from the dex. I spent all day on Sunday vomiting, had terrible stomach cramps and my BP went dangerously high (200/140 at one point). I did not take either of the steroids on Monday, because I did not want to mess anything up with my surgery and consulted with Dr. Bloom instead. He suggested I cut the Prednisone dosage in half. I tried this on Tuesday, but still had the same side effects. I called Dr. Bloom immediately and told him to forget it…I would much rather deal with the dexamethasone and the nasty muscle ache side effects…so I am resuming the 40 mg of dex for four days on then four days off. I will have two more cycles to complete. I started my second to my last cycle today and will take this dose through Saturday. Off days for this round will then be Sunday-Wednesday. Dr. Bloom also has referred me to Dr. Mark Reding at the University of Minnesota. He is a Hematologist that specializes in clotting disorders. Dr. Reding is also petitioning the drug company (along with Dr. Bloom) on my behalf to allow me to move forward with the N-plate infusion despite the dangers of the drug growing cancer. Dr. Bloom and Dr. Reding have now decided that what I am dealing with is not an auto-immune disease, or it is not ITP. Dr. Bloom has presented my case to the doctors at the University of Minnesota, as well as Abbott and shared my case with the National Board of Oncologist and Hematologists. They, along with other doctors from Abbott and the University, looked at all my biopsies and tests since I was diagnosed back in December of 2008, and it appears that my whole platelet problem was brought on by the high dose chemo I received at the stem cell transplant. My bone marrow shows that I have enough megakaryocytes needed to make platelets, but they are just tired out, not making as much as they should…so the N-Plate infusion will help wake up my bone marrow to get producing more platelets. Removing my spleen will not help me, as this is a platelet production issue. This is why the steroids are not making a difference and the Rituxan treatments, I had in January and February did not work. This proves to me that medicine is truly trial and error. The steroids are helping my other blood levels, so that is why he chose to keep me on them and I agreed. So the plan has changed just a bit. I will remain on the steroids until I am approved for the N-Plate infusion. I will also meet with Dr. Mark Reding at the University of Minnesota on June 2 and he will officially then be working on my case. I will follow up with Dr. Bloom in his office on June 3, but will continue on the steroids and daily blood tests to show if I need a platelet transfusion if my platelets fall below the 20,000 mark. I will also remain on the estrogen to thicken my blood to help prevent another brain bleed. I still need to be on top of any head ache, any dizziness, or any change in vision…that would mean symptoms of a brain bleed…I would need a CT scan with minutes, need platelets with hours and get transferred to Abbott in moments. This still makes me a little nervous…so I hope a headache never comes…I am afraid of crying sheep, and if I got a head ache, having it be nothing or not acting fast enough, and having something bad happen…so it would be best if all headaches just stay away now!

Take care,
Nicole

Tuesday, May 3, 2011
I am looking forward to a great day today! It is my last scheduled day of steroid treatment, for the second round of therapy. I will then I have four off days beginning tomorrow, May 4 and then start my third round of treatment on Sunday, May 8. I am not looking forward to the off days…the fatigue, and severe pain I experience, especially with being gone with Talea in Eden Prairie for dance competition this coming weekend. It will be fine, I will just rest when time allows. I am looking forward to spending the time with my daughter…away for a couple of days, focusing on her and her dance…normal life. I am hoping my blood pressure comes down on my off days of the steroids, and I am thinking it should. I started having problems with my BP trending on the high side since I started on this round of steroids this past Saturday. I have had to take the hydrolozine (emergency BP med for my pressure over 150/100) regularly since starting the steroid on Saturday, April 30. The high pressures are directly related to the steroid treatment. I spoke with Dr. Bloom over the weekend about my concern, with the high BP and taking the meds for frequently. He reminded me it is imperative I keep my BP under control, and I need to use the hydrolozine to keep it in check. He also stated if I get systematic of a brain bleed (headache, dizziness, vision changes) I need to get to Abbott ASAP…but so far, so good…I have not been symptomatic.

My platelets dropped down to 21,000 yesterday, so after dialysis this morning, I will be traveling up to Abbott for another unit of platelets. I couldn’t help but be disappointed with my results of my labs yesterday…I was hoping the second round of steroid treatment would starting making a difference with extending the life of my platelets. It appears it is not happening yet. When I spoke with Dr. Bloom yesterday, he stated we are going to keep going with the treatment plan we have in place. He is still working on the appeal process to get me approved for the N-Plate infusions…the hold-up is till with the drug company and my insurance company. Dr. Bloom also stated he has reached out the University of Minnesota, the Bone Marrow Transplant team of doctors. He simply stated he wanted to get other great minds involved to explore any other options out there. Dr. Bloom stated that this was a new avenue to worth exploring. Time will tell what if anything, will come out of it…it gives me more hope.

I am looking forward to meeting the surgeon tomorrow, May 4 about having my PD catheter replaced. This could be happening as early as next week…and I could possibly be back on PD by the end of next week. I am anxious to make the transition back to PD…it will have a positive impact on my life and treatment moving forward.

Enjoy your day! Could it possibly be sunny and a little warmer today…maybe like spring?
Nicole

Thursday, April 28, 2011
The sun is shining!!!!!! It has been a busy week and as I head into the weekend, it will not slow down. I am heading to Abbott by 10 a.m. tomorrow morning for a transfusion of platelets. Today my platelets were down to 21,000, so Dr. Bloom got platelets ordered. My platelets results from the week:
Tuesday, April 26–56,000
Wednesday, April 27–30,000
Thursday, April 28–21,000
I am still on my off days of steroids. My body is very sore, but on the up side I am sleeping and resting very comfortable. I will start my steroids again on Saturday, April 30 and take them through Tuesday, May 3, so until then I will enjoy the break.

I had dialysis on Tuesday and Thursday this week and will have my next run on Saturday. Dialysis has been ok and I have managed to get through it. I am there by 5:45 a.m., so I am planning to sleep through my treatments, which will be best for me and my body…plus it will make the time go fast and help me feel better. I am so exhausted after treatment…the same as what I experienced before…fatigue, body aches, fever, chills, and exhaustion. The upside is that my blood pressure has gotten stable and is within normal range. That is a huge relief…as it was the high blood pressure that brought on the brain bleed in the first place.

I spoke with Dr. Gray, my regular nephrologist, for the first time on Tuesday since being discharged from the hospital. I explained to Dr. Gray that it was my desire to get back to home dialysis as soon as it was safe for me to do, that I do not wish to be on hemo dialysis for any great length of time. He is totally supportive of this and stated there is no reason that I cannot get back to PD as soon as possible…in fact, he would like me to get the dialysis access I have in my neck out as soon as possible because of the high risk of infection it has. With that, he has scheduled me with a surgeon at North Memorial next Wednesday, May 4 for a PD catheter consult. It is my hope I can be back on PD by the middle of May. We also decided it would be best for me to have an AV fistula placed in my arm for a hemo dialysis access for future use, to alleviate the need for the type of emergency dialysis access I have in my neck. I will be meeting with a surgeon on Friday, May 13 for vein mapping and consult for a fistula placement. AV fistulas take months to heal and mature, so it will not be able to be used right way. This way I will have a fistula in place so I will always have the option to run on hemo dialysis…whether it be in the dialysis center or home hemo. This will also allow me to explore the option of home hemo dialysis as well.

I am looking forward to seeing more sunshine tomorrow as well as being boosted up with platelets. I am hoping that the next round of steroids start making a difference with my numbers…I need to continue to stay positive and have wishful thinking …my platelets have to start coming around…they just have to.

Take care,
Nicole

Monday, April 25, 2011
I made it…I am home sitting comfortably on my bed as I write this. It was absolutely wonderful driving the road home with Clint and Talea, being reunited with my home, surroundings and especially my pets. The one person missing yet is Tristan, as he had a tennis meet out of town tonight, so I am anxiously awaiting his phone call to pick him up. YEAH!!!! It is a great feeling to be here!

My platelets dropped again this morning to 15,000, a 6,000 drop…yes, a decrease again, but a smaller decrease than yesterday. I was transfused with one unit of platelets this morning. I did not have a dialysis run with getting the platelets…nephrology decided that it was not necessary since I am scheduled to have a dialysis run tomorrow morning at 5:45 a.m. Dr. Bloom stopped in around 1 p.m. He reconnected with Dr. McGinnis and has standing orders in at the medical center for my daily CBC to watch my platelets. He also gave her the latest details and went over her expectations with contacting him with any low levels. They only thing I will do at Hutch is the daily CBC to watch my platelet level, and I will come back to Abbott for any transfusions or treatments I need. Dr. Bloom also reminded me that a headache with me is not like a headache with any other person. If I get a headache, I need to go to the ER immediately for a head CT to look for a bleed and blood pressure control. The ER will need to get me transferred to Abbott immediately for treatment needed. I have not had any headaches since Friday, so that is a good sign that the control of my BP, increase platelets and the estrogen therapy is working to thicken my blood. Today, my BP has been on the increase again, so my nephrologist is sending me home with three different BP meds, two which I will take scheduled each day and one to take as needed when my BP rises over 150/100, to help it come down. Again, he stressed that my BP will begin to become more stable as my body adjusts to the new dialysis. I have to put some serious thought into changing back to PD (or not), because it will be another shock to my system, and truthfully, I don’t want to cause more problems. Time will tell which way I will go. I am looking forward to tomorrow being my first off day from the steroids…just looking forward to getting some good sleep. Fortunately, I was able to sleep 4 hours last night…feel asleep about 1 a.m. and woke ready to go at 5 a.m. this morning. This will get better over the next few days until I start the steroids again on Saturday.

I had a couple of surprise visitors today too. First thing this morning, Joyce Evenski, another former co-worker from the college, stopped by to say hi. It warms my heart to be thought of and it was great to visit with her. Then my step-mom, Gywn and her brother stopped for a visit. She was in the neighborhood for her post-op appointment for the liver cancer she is battling. We had a great visit…I truly enjoy reaching out, talking and supporting other’s battling against this nasty disease. She is doing great and I am so proud of her, the way she is a fighter to get through this and regain her life.

Tomorrow, I will have my first dialysis treatment at the Hutch dialysis center. They already called and changed my time. I was originally scheduled to be there at 5:45 a.m., but the called and stated it didn’t work out for the staff person assigned to me to come that early, so they reschedule me for 9:30 a.m. When I called to schedule my lab appointment at the medical center, the earliest time I could get in was 11 a.m. I then called the dialysis center back and explained that I could not come in that late for dialysis…that I need to have labs checked as early as I can, so my lab time now conflicted with the new dialysis time. Thankfully, after some begging and pleading with her, she agreed to let me come in at 7:30 a.m., to be done by 10:30 a.m. so I can make it to my 11 a.m. lab. This upset me because this is what always happened when I went there before. I am scheduled with the same tech that used to give me a cold shoulder when I used to go there for treatment, when I could not follow her schedule. Not the way I wanted to start off my stay at the dialysis center…This will just push me to resolve my choice of dialysis and get to a treatment option that works for me…it will be a short stay at that center…there are other options for me. The rest of the day, I plan to first be a mom, start getting caught up at home, and get some sleep. I am excited to have the day out of the hospital…It will be a delightful day.

So grateful to be alive and home!!!!
Nicole

Sunday, April 24, 2011
I had a wonderful day today, and had a super time visiting with very special people in my life. It means so much to me having them take time out of their lives to spend it with me. My day started with a terrific visit with Andi Upin, a former co-worker from the college. It was refreshing to visit with her about things other than my health…to have a conversation about other things…I really needed that…thank you Andi for giving me your time to lift my spirits! Just as Andi was departing, my mom and stepdad made the trip from Olivia to spend the morning with me and have lunch together. I was very generous and thoughtful for them to travel so far to spend the time with me…I appreciate it and enjoyed the time together. These may seem like simple things, but they make a huge difference in my life and attitude. My last guests to arrive for the day were my family, Clint, Tristan and Talea. They hung around until early evening and we enjoyed time together doing the little things…taking a long walk outside (what a gorgeous day!) and another walk down to Midtown Global Market, compete with a wheelchair in case I tired and needed it, but it was used mostly by the kids and they had the most fun with it! We also sat up and enjoyed each other’s company in the afternoon sun on the 7th floor of the heart hospital and took in the a beautiful view of Minneapolis. For some down time this afternoon, Talea and I snuggled in my hospital bed while we all took in some Sunday afternoon tv…peaceful and normal, it was great. Of course, made our afternoon trip to McDonalds for ice cream cones and finished off our time with supper in the cafeteria. The moment came all too soon that it was time for them to depart for home. The last day in the hospital is always the slowest for me, as I am always so anxious and excited for my discharge and trip home. I am holding on to hope everything continues to move forward and nothing else changes or comes up to prevent me from going home tomorrow. I will be crushed if it doesn’t work out to be discharged tomorrow…it will be so hard on my family too…it’s been a long two weeks for them.

My blood pressure increased throughout the day today, which is because my body is collecting impurities and fluids (nothing abnormal for a person on dialysis)…I am closely watching my intake to slow the rate at which it rises. My platelets dropped again since yesterday, dropping down to 21,000 this morning. BUT, that is a drop of only 7,000 so it appears rate of which they are dropping is slowing! I know it is still a drop, but it excites me to see the rate slow. I am guessing I will be below the 20,000 mark tomorrow and will require a transfusion. Dr. Anderson, my Internal Specialist, stated if I need platelets tomorrow they will more than likely transfuse them with dialysis, because anytime I receive blood products, extra fluids are put into my body, which would only complicate my blood pressure more. This way, I can also pull extra fluids at the same time, to set me up with leaving with a good platelet level and better blood pressure. I am really hopeful that as the week progresses and the steroids build up in my body it will bring an end to the dropping platelets. I took my third dose of the steroids this morning at 8 a.m., earlier than the last two mornings because I did not have dialysis today. I am hoping I will get more sleep tonight with the combination of having the opportunity to take the steroids earlier in the day, the extra physical activity I had today and the exhaustion I am feeling from the lack of sleep I have had the last couple of nights. I only slept about 2 hours last night again…I feel tired and my eyes are really tired, but I am just unable to get myself to sleep because my mind and body are just racing. But, tomorrow is my last dose for 4 days, so I am sure by Wednesday, I will be able to sleep the day away. I am looking forward to napping in my own surroundings!

Take care,
Nicole

Saturday, April 23, 2011
Friday turned into a fantastic day…nothing to exciting emerged (with my health) but it did have a surprise visit from Talea and Clint, so I was able to spend an enjoyable evening with them. I had a run on dialysis yesterday and was able to pull some more fluid, which helped my blood pressure come down a little. By the evening, it was touching the high range again, but having dialysis today helped me pull off more fluid, getting it to drop into my normal range. I spoke with the nephrologist about my concern with my BP creeping high so frequently, I know it will worry me after I get home. She stated it will stabilize the more my body adjusts to the new type of dialysis I am on and we will just control it with diet, meds, and dialysis until then. She also stated it will always be a moving target and will not be as stable or normal as it was when I was on PD. She also reminded me that I am not any doing it any good by worrying about it. I am looking forward to adjusting to a new normal and this becoming a memory!

I visited with Dr. Bloom yesterday afternoon. We decided it would be best for me to stay in the hospital over the weekend to watch the platelets and BP trends and be right here if I needed to be treated. He promised me that I would be able to go home on Monday, that this extra time in the hospital will be a benefit in knowing what to expect as I go home. I am ok with this. I am super anxious to get home, but also nervous about not being near my doctors in case something happens. It will be an adjustment period, a new normal to get used to again for a while. I am confident Dr. Bloom has a good plan in place to watch me after I return home and I will just have to alert to how I am feeling.

My platelets came back at 28,000 this morning, so that was another drop. I did have my second dose high dose dexamethasone (steroid) this morning, so I am holding onto hope I will soon see an increase in platelets…tomorrow they have to be better. I may be looking at a transfusion tomorrow if they dip below 20,000. Dr. Bloom is not here this weekend, but I will get his feedback first thing Monday morning. When Dr. Anderson, my Internal Specialist, rounded this morning, she stated she will be in contact with him over the weekend if my platelets drop below the minimum or if any other emergency comes up. So far the side effects from the dexamethasone I started on yesterday have been uncomfortable…I am very shaky, uneasy, jittery, my heart races and I cannot sleep, even with the medication Dr. Bloom gave me to help with sleeping. I finally fell asleep at 3 a.m. this morning but woke up at 5:30 a.m. I could not sleep during dialysis and had to take my next dose of steroids at 11 a.m. Now I am wired again. I have to believe it will be worth it and this will help my platelets. I only have two more days of steroids then I will have four days off…I am sure I will crash by Thursday.

I am looking forward to seeing my family tomorrow when they visit and holding on to Dr. Bloom’s promise of going home on Monday. Again, I want to say thank you for supporting me and my family as our journey continues. Your kindness and compassion lifts my spirits and keeps me going and fighting for the next step. Thank you.

Happy Easter!
Nicole

Friday, April 22, 2011
My blood pressure has been stabilized from the assortment of strong meds they have me on. I did talk to the nephrologist about my high BP, I have never had my BP stay so elevated for so long and it makes me very nervous because that is what brought on the brain bleed in the first place. He would like to have me run dialysis the next two days and pull of extra fluids slowly. The previous nephrologists was pulling off fluids from dialysis, but they were being pulled off too fast and result is that my BP remained high. He stated once the extra fluids are pulled off slowly, I should see my BP drop into normal range, and should be able to get off all blood pressure meds. I am so used to handling my pressures by peritoneal dialysis, by adjusting dextrose percents and treatment lengths, that this hemo-dialysis in all foreign to me again. I am hoping this works and my BP drops to have one less thing to worry about. It will be also one step closer to being able to go home.

Dr. Bloom and the surgeon, Dr. Johnson, met with me today and came up with a game plan. The goal of this plan is to approach removing my spleen at the safest possible time…after I have a kidney transplant and I no longer require dialysis. Taking out my spleen will definitely result in permanently fixing the low platelet level, but will be reserved for the last weapon to fight this ITP. Dr. Bloom has transitioned me off the IV steroids to dexamethasone (40 mg. daily for 4 days then 4 days off), the same steroid I was on during chemo treatment and the one I have awful side effects to. I will do this pulse steroid treatment for one month. I will continue to have my platelets checked to see what results I get from these steroids. This is buying me some time to get approved and started on the N-Plate infusions, which I will then have until by platelets respond, but for the max of 6 weeks. If the N-plate infusions do prove successful, that is the treatment I will stay on until I can have a kidney transplant and can remove my spleen safely without the heighten risk of a serious infection because of my other conditions. If the N-Plate infusions do not work, I will have to move ahead in removing my spleen and face the real possibilities of picking up an infection I would not survive. Dr. Johnson stated patients under normal circumstances must be keep up-to-date with all standard vaccinations, in addition to other vaccinations such as meningitis and must be very careful because even minor infections can develop into sepsis. I would have to extremely careful with contracting infections because my risk would be slightly increased due to my under lying health problems. The surgeon recommended that if my spleen was removed before I had a kidney transplant, I would have to permanently change to hemo dialysis because of the risk of peritonitis on peritoneal dialysis. Not what I wanted to hear and something I am not ready to commit to if my platelets can be controlled with medication until I can have a transplant and no longer need dialysis. I am happy with the plan and willing to give it a try. So in the short term, my platelets will be kept above 20,000 with the help of transfusions, high dose steroid pulses and starting the N-Plate infusions until we see how I respond. Dr. Bloom also started me on estrogen to help thicken up my blood to further help prevent any bleeding. So, right now going back to peritoneal dialysis is up in the air until we know if the N-Plate treatment works. I am disappointed, but I am hopeful for results from the N-Plate to fix me until I can be transplanted, so dialysis is not an issue and I can then have my spleen out.

My platelets fell again over night, down to 45,000. I am waiting to hear from Dr. Bloom to see if he will let me go home. I would just do platelet checks at the medical center in Hutchinson and get back up here asap for a transfusion, if they fell below 20,000. Looking back at my last week of platelet levels, the trend is that they are dropping 20,000 to 30,000 a day, so I would for surely need platelets by Sunday…unless my body decides to develop a new higher baseline (my baseline before I started these treatments was anywhere from 8,000-11,000.) I have a feeling Dr. Bloom will want me to stay in to observe the trend some more. I am anxious to get home, this hospital stay has been extremely difficult for my family, but I know I cannot push this time to go sooner than I am ready and I need to listen to my doctors. Easter in the hospital…yippee! No, honestly it could be worse. I truly believe each disappointment I am handed, something good will come out of it, maybe not right away, but eventually the silver lining will shine…this will be no different.

Take care,
Nicole

Thursday, April 21, 2011
This day has left my head spinning, with all the information given to me. I spent the day in ICU being observed, having tests rand resting. I did met with the surgeon, as Dr. Bloom stated I would about removing my spleen, but that is what my head is spinning about, so I am going to wait to post the details until I have it clear…I just don’t want to give out false information or misinterpret anything.

The MRI results came back normal…no long-term or other damage done from the bleed…that is the first result I have to be thankful for. The second is that the follow up CT scan came back with no change, no additional bleeding. The neurologist stated I could not ask for better results and the blood that is pooled in my head will be reabsorbed into my body. I have not received any more platelet transfusions yet, but unfortunately my platelets have begun to drop again from 120,000 to 90,000. My platelets will continuously be held at 20,000 in the short-term with platelet transfusions and steroid treatments until it is decided how to fix the problem in the long-term…give the IVIG time to work, try the N-Plate injections and see if it even helps, or remove the spleen putting me at risk of contracting a fatal infection as a result of having no spleen…oh the thoughts to ponder this morning as I try to get to sleep. My blood pressure, for the most part of the day, was under control. But it went way off the charts between 6 and 7 tonight after I got done talking with the surgeon, got off from dialysis, got transfer out of the ICU, moved back to the 4th floor, and my family came. They got it to respond and lower with some BP meds, but now they just checked it and it is pretty high again at 167/111. My nurse just contacted the doctor and gave me some strong BP meds to get it back down and will do a recheck in 30 minutes to make sure it lowers and will do rechecks throughout the night. This high blood pressure thing really has me terrified…especially of another brain bleed.

Well, that’s about all I have to report tonight. All of this happening makes me realize (again!) how so very grateful I am to be alive. Life is precious and so delicate. Again, I want to thank everyone for the kind words, encouragement, thoughts and prayers. I am truly blessed and fortunate to have so many kind, caring people in my life. Thank you.

Take care,
Nicole

Tuesday, April 19, 2011
It’s really funny how things play out. I had the total expectation that I would be here to get blood, platelets, IVIG and be on my way home by this evening. But my body had different plans for me…it’s all about listening to your body, no matter how subtle or obvious the message it is.

I woke this morning about 6 am with a terrible headache; I actually could feel the headache through my sleep from about 4 am and on. It was pounding, I had a hard time seeing and it didn’t take long for me to start vomiting. Migraine, I thought…yuck! But this was a little different than a migraine as it just wasn’t in the front, in my eye causing sensitivity to light, and vomiting…it was all those things plus throughout my whole head, and all I wanted to do was hold my head in my hands and stand. I called my nurse to request some Tylenol and put a call into the doctor for a med for headache. The doctor was pretty quick to respond with some meds to help but also was concerned so she ordered a CT scan of my brain.

The results of the scan came back right after 12 pm and I could have never imagined what I was told. I was told that there is bleed on my brain and I need to be moved to ICU immediately for further testing, treatment and observation. I was transferred to a room in ICU about 2 pm and met with a neurologist and an intern. He performed a battery of exams on me…all that I am happy to report I passed with flying colors. He explained the goal of the next steps is to monitor me, my blood pressure (that went extremely high) and to keep platelets at an increased level to prevent any more bleeding. They have me hooked up to a BP monitor that checks my BP every 15 minutes and released BP meds when my BP exceeds the perimeters set by the neurologist. I also had a MRI on my brain tonight to check on the rest of my vessels in my brain. I received another two units of platelets; they got my platelets up to 120,000, the highest they have been for years! Tomorrow I will have a second CT scan to compare it with the CT scan of today to make sure the blood is being absorbed and the platelets are doing the job clotting.

Dr. Bloom stopped in about 5 p.m. and told me we were done with the wait and see approach. He has started applying for the N-Plate injections to help my platelets. I will stay on the high dose steroids and start the N- plate injections with in the week. I will need to have my platelets stay above 20,000 and will be transfused as needed to maintain this goal. I will also meet with a surgeon tomorrow to consult about removing my spleen. He stated we may be to that point. No one really understands why this happened, but it did, and we need to stand up and take notice and take action. It could have been the blood products I received last night, making my blood pressure rise and causing the vessel in my brain to ooze…or it may be something we never get an exact answer to, but it definitely got our attention. We are both grateful I was in the hospital when this happened, because I would have not survived this at home.

Because of all the equipment in the ICU, I am not about to use my cell phone, which has made it extremely challenging keeping in touch with my family, especially Talea. I do have land line phone that the nurses’ station can transfer calls to me, but I just can’t call out on. This works for now and thankfully this should be a short stay…hopefully I will be moved to another part of the hospital tomorrow sometime. The silverlining us that I can still use my computer and have contact with friends and family through email and facebook. The ICU is quite different than the other floors I have been on. I am totally bed ridden, I cannot get up for anything and I have my own nurse stationed outside my door to help me with whatever I need. This has been a hard adjustment because I am so independent!

I will post tomorrow…my goal is to do a better job at updating when I have the energy to do so. Thanks for the love, prayers, and kind thoughts. They mean so much and help me get though another tough time.

Take Care,
Nicole

Monday, April 18, 2011
I just can’t stay out of this hospital, I guess. I was admitted to Abbott again today about 2 p.m., not outpatient, but inpatient. I contacted Dr. Bloom this morning about the dose of IVIG, I filled him in about the bleeding, (not only around my catheter in my neck, but my other incisions, from the hernia repair and PD catheter removal also broke open and were bleeding) and feeling cruddy with the low blood. Yes, I was right in assuming I would be coming back. My time at home was fantastic, and I enjoyed it immensely!

I was admitted through the ER for initial blood work (hemoglobin was down close to 7 and my platelets were down to 15,000) and brought up to the floor about 4 p.m. I was sent to Admit/Discharge Center until they had a room ready for me on the renal floor. I made it to my room about 6 p.m. and then immediately went to dialysis. The doctors decided to transfuse my blood and platelets through hemo dialysis because of the amount of blood product I was receiving, making it a faster process. I received three units of blood and two units of platelets. It appears all bleeding has stopped. Now hopefully the IVIG and steroids start working and my platelets hang around to allow my body to heal. I feel better from the units of blood too. The down side is that I feel sick from dialysis…I really dislike hemo-dialysis and I am quite anxious to get back on PD.

It is my hope, I can have the last IVIG treatment tomorrow morning/afternoon and be discharged and home by late afternoon or early evening. I feel rotten about leaving my family again, and am looking forward to an extended stay at home, as I move forward. It is still the plan to continue on the IVIG and steroids for 6 weeks to see if my platelets respond and move to the N Plate injections if no success if found with the IVIG and steroids. I will have a new PD catheter placed in a few weeks and transition back to PD. I also will have follow up and the stomach emptying test with the GI team here when the other things settle down in a few weeks. I am good with everything as long as I stay away of becoming in-patient

Take care,
Nicole

Sunday, April 17, 2011
I made it back to Hutch today just in time to see Talea perform at the mall. Her beauty and grace brought tears to my eyes…no, really it was more than that. I always have so much emotion being reunited with my kids, but this time was just much more overwhelming, seeing her hard work pay off as well as her gain in confidence to perform in public. It was a moment that brought me so much joy as a parent! I realized how truly fortunate I am.

I have to call Dr. Bloom right away in the morning and will more than likely have to go up to Abbott’s infusion center for the last infusion of the induction series of the IVIG treatment. Also, the catheter I had placed for hemo dialysis started bleeding through my bandage before I left the hospital. I had the IV nurse clean the area and replace the bandage before leaving and then by the time I got back to Hutch, the bandage was full again. The bleeding has continued this evening. I believe it is because my platelets have dropped again and my body cannot form another scab. I am thinking, when Dr. Bloom hears this, I will have to get some more platelets. My hemoglobin was also down to 7.7 this morning, so not low enough to receive a transfusion. But now with the active bleeding, I am sure it has dropped below 7 and a blood transfusion will be on my agenda too. I am feeling much more tired, achy and having shortness of breath…so the writing is on the wall. The upside is that it should be a quick hospital stay and I will be home by tomorrow night.

Hope everyone has a happy Monday and great week. Take care!
Nicole

Saturday, April 16, 2011
I have another new chapter to update everyone on. Before I start, I have adjusted to not working and I am now convinced it was the best decision for me to make as I could not imaging going through all of this while working and taking care of my family. I do miss work, especially the contact with my co-workers and the students…just the atmosphere of the college and my job responsibilities. My wonderful co-workers have been more than generous again by donating their hard earned vacation hours to my well being as I was approved for the vacation donation program, which gives me a paycheck and medical coverage for the short term. Their generosity warms my heart, makes me so grateful and has made this transition and my life much easier. I feel so lucky and an immense amount of love and support from these kind-hearted individuals. They have been more than giving to me and I really appreciate their kind jesters. Also, every few weeks I have received a care package, cards, or surprise visit from some of my past co-workers…wow, each package, card, or visit has been such a pleasant surprise to me. I am convinced I could not have had better people to work with…and that makes me miss everyone so much more. My parents have been outstanding with me too…always making sure to spend time with me at each one of my hospital stays…this most recent one, my mom made the sacrifice to stay with me over night, just so I did not have to be alone the next day with procedures (some of which were pretty invasive). My dad make sure he supports me every day with phone calls, and gets up here to visit with me a couple of days or evenings in each hospital stay to spend time with me. He is also dealing with his wife, my step-mom Gwyn, going through treatment for cancer of her liver. I cannot imagine the stress he is going through having two people in his family battling serious health conditions…you would never tell though! My in-laws also do so much for Clint and the kids and also take the time to visit me while I am in the hospital. Karen, my closest friend never lets me forget how much she is cheering me on with cards, flowers, phone calls, emails, bingo dates, lunch dates, and visits while I am in the hospital…she also does an awesome job keeping everyone updated at the college on my journey. My family sacrifices so much each and every day with living with me…I appreciate them so much for putting up with me

Things over the last few months have just kinda continued on the same path…low white counts, low hemoglobin levels, frequent blood transfusions, low platelets, continued stomach problems with nausea and vomiting, and frequent hospitalizations for peritonitis (and other issues like internal bleeding and the flu)…so three hospitalizations of peritonitis with other issues since January and one hospitalization for the flu since January. My nephrologists has been trying some treatments for the nausea and vomiting over the last month, which seemed to have helped for a short time. I have also been on the rollercoaster ride with my hemoglobin and have been monitoring my level and being transfused when I get low enough. My doctor has also been monitoring my low platelet level, which has not turned around in any way from the Rituxan treatments or from discontinuing the Revlimid treatment. My body has turned into one huge bruise from the low platelets and I honestly do not have to do anything to get a new bruise. The bruising is quite hideous, unattractive and revolting and is throughout my whole body…they don’t feel very good either. I was also in the hospital for a few days in March for treatment for influenza type A. At that time, I was one of three people to contract influenza A this year because it is not a bad flu year, as in the past. I did get my flu shot this year too, back in October, but still picked it up because of my low white counts. I also had my 18-month check up with Dr. McGlave at the University of Minnesota for my stem cell transplant. My check up went well; although he was concerned about the issues I still had with my blood levels and stomach, and really wanted my primary doctors to get things figured out and under control. I left with a to-do list of issues to be taken care of and he committed to working with my primary oncologist to develop a treatment plan. Okay, now that I have you caught up…here is the newest drama that has occurred in the last week…

Thursday night, April 7 I started having some minor stomach pains with dialysis and lots of fibrin in my fluid. Friday I focused on getting my house in order, laundry caught up and grocery shopped to make sure my family would have enough in the cupboards incase I had to go to the hospital. By Friday evening, the pains in my stomach became severe and I also developed a temperature. I finally gave in and went into the ER in Hutch around 6 pm…only after I made sure my kids were fed a good dinner. I still take care of everyone else’s needs before I take care of myself…this has not changed and I do not think it ever will. Anyway, the ER in Hutch evaluated me and ran the initial blood work and blood cultures as well as cultures of my PD fluid. When my blood work came back not looking so hot, they transferred me to Abbott via ambulance because Abbott is prepared to deal with dialysis and the problems I have. I arrived to Abbott about 11:30 pm. I have spent the whole week (and day) in Abbott working on getting my issues under control. I was started on IV antibiotics immediately for the infection in my peritoneal cavity and site where my peritoneal catheter enters my abdomen. My platelets were still low running around 8,000 and I was still experiencing a lot of nausea and vomiting. Fortunately, I am at a huge hospital and have all kinds of specialists at my fingertips that want to help me. I was scheduled consults with oncology, nephrology, and gastroenterology. Dr. Bloom, my primary oncologist, received word of what was going on and scheduled a bone marrow biopsy for Tuesday afternoon at 12:30 to look at marrow and my platelet production as well as my white and red cell production…to start troubleshooting what is happening with them and to get an updated picture of what my multiple myeloma is doing. Before I knew it, I then was scheduled for an upper GI at 9:30 a.m. Tuesday, to start uncovering why I am nauseated and vomiting so much. Also, by Tuesday, it was decided that it would be in my best interest to remove my PD catheter, as it was infected and coated with bacteria internally; causing the repeated infections I have been hospitalized for in the last four months. Wednesday, I had a perm-cath placed to start me on hemo-dialysis short term, as I will need to give my abdomen time to heal, the infection time to get better and a new PD catheter placed after healing. My peritoneal dialysis catheter was removed on Thursday and sent in for culture. While the surgeon was in there taking out my PD catheter, he also repaired a hernia I had for years…another problem solved. I also had my first run of hemo-dialysis on Thursday. I received my results of my bone marrow biopsy yesterday and it showed that my multiple myeloma is still in remission…yeah! Probably the best news of the week and the news that took the most worry away. I will not do any type of maintenance for the multiple myeloma until the rest of my problems are taken care of. The biopsy also showed that I am producing platelets, red and white cells adequately…a little reduced, but adequate enough to be healthy, so that means these are being destroyed in my blood stream…so ITP is still my problem. I have been started on high dose steroid treatment and IVIG treatments. I will continue with these treatments for six weeks. If these treatments do not work, I will try an injection called N plate, which is a growth hormone for platelets…a fairly new treatment available as I understand. There are some side effects from this drug, which I will have to look at. If I have to do the N Plate injections and they do not work, the last resort will to have my spleen removed. I did have a CT scan months ago that showed my spleen is enlarged. But oncologist is not jumping into removing my spleen because I cannot be on peritoneal dialysis for some time while and after my spleen is taken out. Part of me just wants to have my spleen out since I am already transitioned back to hemo dialysis, but the other part wants me just to follow the plan from my oncologist. I know he will only do the best for me and I do trust him and his knowledge…but I am sick and tired of dealing with these low blood levels. All this will have to be figured out before I can move forward on a kidney transplant. As for my stomach issues, the upper GI scope I had shows inflammation of my esophagus, probably caused from the terrible mucositis I had from the melphlan (high dose chemo) at stem cell transplant and not healing properly from the low platelets and constant vomiting I have had over the past couple of years. In the short-term and for short-term relief, they changed my diet to low-fat and low-fiber, suggested I take some zolfran (anti-nausea medication) before eating. I will follow up with the gastroenterologist in a few weeks to have a stomach emptying test done to test for gastropareseis, a condition which causes my stomach to empty very slowly. There are also medications I can go on to help with this.

And the latest…I just got word my white count dropped over night, probably from the high-dose steroid treatment I received last night and my hemoglobin is back down to 8.3, which they are unsure why. I will not be transfused for blood until my hemoglobin drops to 7. I have not talked to anyone in detail about my white count dropping so low again, so I am not certain if any action will be taken to get it to rebound. One detail I forgot above is that I received three platelet transfusions, one transfusion before each procedure…one on Tuesday, another on Wednesday, and the last on Thursday. My platelet count increased with each transfusion, but also did drop off in between the transfusions as well. I also received word from my morning labs just now that my platelets took a significant drop, probably because I did not receive a transfusion yesterday…just evidence on how fast my body is destroying them…stay tuned, the story will continue.

So, I now have treatment plans in place for all my issues and I hope to fixed up very soon. My goal today is to get my pain under control, continue the high-dose steroid treatment, have my second IVIG treatment, and have another dose of IV antibiotics for the infection. It my hope that I can be discharged tomorrow morning and make it back to Hutch in time for Talea’s solo show at the mall. I have never missed a dance recital for her…or missed out on getting her ready or supporting her for her performance. This is the first time in her whole life she is performing as a soloist and it is so important for me to be there for her, not only to take in her performance, but also to support her through this experience. If I am not able to go home tomorrow morning, it just breaks my heart thinking about telling her I can’t be there for her, to help her prepare, hug her, and see her on that stage. I have missed out on so much with both my kids and they have been through so much…I do not want to add this to the list of events I have missed and I just don’t want them to have to endure yet another disappointment. I try not to pity my situation, I try to stay positive and be grateful and thankful for what I have, but it is just not fair. It has been a hard, long week full of painful procedures, and I am just ready to go home to be with my family and be a mom again, now that I have a treatment plan in process.

Take care,
Nicole

Tuesday, March 1, 2011
I said goodbye at Ridgewater on February 1, it was a very tough day. It was very difficult to bid farewell to my friends and see my duties picked up by someone else. I so appreciate everyone being so supportive of my decision and rallying behind me as I start a new phase of my life. The support has been overwhelming and it reminds me of what a wonderful group of people I had the honor to work with and share part of my life with. I realize leaving was the best thing for me to do…just being able to alleviate some stress and to give me more time to focus on my family and health. I am so grateful for the time I have now to spend with my children…I truly enjoy each day.

I recently spent another week at Abbott, again being admitted for peritonitis. I went to the Hutch ER on Sunday, February 13 and they loaded me up in the ambulance and sent me off to Abbott. I was in this time until Friday, February 18. I was treated with IV antibiotics and received platelets again. Dr. Bloom made the decision to stop the Revlimid therapy because of the frequency of infections I am getting. He also suspects the Revlimid is preventing my platelets from recovering from the Rituxan treatments I received. This makes me very nervous, being off the Revlimid, because the Revlimid was the only guarantee that the cancer would remain in remission. I need this cancer to stay away for a kidney transplant…if the cancer returns, no transplant for me. But in the two weeks without Revlimid, there has been no significant increase in my platelet level, so I will be talking to Dr. Bloom about resuming the Revlimid when I see him on Thursday. A new kidney is the world to me…and I don’t want to miss my chance, when I will become active on the transplant list in October 2011.

Friday, March 4 is my daughter, Talea’s, 12th birthday… each birthday (or any other milestone) I get to celebrate with my kids means the world to me because it is a reminder that life is so delicate and in a moment, it could all be taken away. I truly try not to take anything for granted and enjoy each experience given to me. I am looking forward to spending the day with her and feel so fortunate that she wants to spend the day with me shopping! I will be having a quiet week, resting, so I don’t mess anything up for her!!

Nicole

Saturday, January 22, 2011
I spent the first days of 2011 in the hospital. I was sent up to Abbott from the ER in Hutch, for a bleeding nose that just wouldn’t stop and pain in my stomach, which turned out to be peritonitis. The ER doctor in Hutch packed my nose (which I would never suggest anyone do) to control and slow the bleeding. The packing stayed in for a couple of days while I was given a platelet transfusion and some steroids. Just like with other platelet transfusions, my platelets again jumped to a good level of 67,000 (from 10,000). Once the platelets were in me, my nose stopped bleeding. The doctors at Abbott then treated me with IV antibiotics for the peritonitis, which too thankfully cleared up. I also received two units of blood while I was there because my hemoglobin drifted low enough for a transfusion. I was discharged after a week. Upon being discharged Dr. Bloom decided to try another treatment to get my platelets to stop destroying themselves. I now will be going to Abbott once a week for the next few weeks to receive an infusion called Rituxan. The hope is that my platelets, turn around and stop destroying themselves.

I have decided to leave my position at Ridgewater College. I put in my notice last Tuesday, and my last working day will be Tuesday, February 1, 2011. It was not an easy decision, it was a decision that I struggled with, but I do think this is the best thing for me to do right now. I am extremely exhausted and I do not have the energy to keep on going like this. Right now, the energy I have is going to Ridgewater, and my family, house and health are suffering. I also feel like I am not fulfilling my duties at Ridgewater either, just because I am so frequently absent from work for doctor appointments, treatments, or hospitalizations. I truly feel like this is the best thing to do for Ridgewater and for me. I am going to miss Ridgewater and my co-workers immensely…they are my extended family and have given me so much support and encouragement every step of my journey. They have also helped me heal and gain back the normalcy that I yearned for after transplant. But it is now time for a new beginning…I need to find a new normal and start the next chapter, time to slow down again and take the time to focus on Nicole and healing.

Take care,
Nicole

Sunday, December 5, 2010
Well, it was a hospital stay for me this weekend…it’s been a while since I had a weekend like this. It started on Thursday, when I went into HMC because I was not able to move my arm or elbow very well. I was also running a low grade fever and just not feeling to very well. Dr. McGinnis took some x-rays and ran some blood tests. The x-rays showed some inflammation and fluid around my joint in my elbow and my blood work did not look too good. After she consulted with Dr. Bloom, it was decided to send me to Abbott to do further testing. I got to Abbott on Thursday night around 9 p.m. First thing, they cultured my PD fluid. Friday morning, they gave me two bags of platelets and some high-dose steroids to get my platelets up to a safe level to do the aspiration of the fluid in my elbow. My platelets jumped from 12,000 to 104,000 with the platelets transfusion and the steroids, so Dr. Bloom asked me to stay in the hospital for the weekend to receive IV steroid treatment to see if the high dose steroids would maintain and grow my platelets. I had to stay in for the results of the cultures and get IV antibiotics anyway, so I agreed to try the steroids. This morning I got the results of the cultures and both were negative…thank goodness. An infection in my joint would have meant a surgery to clean it out and a PD infection would have been more days in the hospital for IV antibiotics. I am counting my blessing. The orthopedic surgeon stated the joint pain, inflammation, and fluid was caused by internal bleeding from the low platelets…which I cause somehow….he said it wouldn’t take much to do this because my platelets were running so low. This issue will resolve itself, but the surgeon suggested I rest and exercise my elbow. Unfortunately, my platelets did not stay at 104,000 for long…they were down to 74,000 this morning, meaning the steroids do not appear to be helping my platelets as hoped for. I will finish out the prescribed amount of IV steroids tonight, recheck levels in the morning, and then be discharged. The steroid treatments have not been easy to handle again, but in talking with Dr. Bloom, I will not have to stay on them, since there was not success. On the up side of this hospital stay, was that I was able to get a blood transfusion, which I was also in need of, so I will have energy again for a while. I also, was able to meet with my kidney transplant nurse coordinator to start the conversation about my kidney transplant. I will come back on December 15 to meet with the social worker and to have all my tests ran. I will then have my second appointment on January 10th to meet with the transplant surgeon about the finding of my tests, and to receive the recommendation of when I can move forward with a kidney transplant. Because what is riding on my transplant, I have inquired to Dr. Bloom and am considering going back on a low dose chemo in hopes that it will keep the cancer from showing up any sooner. There are pros and cons going back on chemo, and no guarantees that it will make any difference. I need to have more of a conversation with Dr. Bloom before I decide what to do. One final wonderful outcome of the weekend was the fabulous care from the nurses at Abbott. I have been so fortunate to have the most wonderful, caring people in the nursing profession take care of me. One of my nurses, Jenny, went above and beyond the call of duty after I shared with her the plans I missed with Talea to take her to the midnight release of the DVD Eclipse. Jenny went down to Redbox at McDonalds at her break and rented me the movie so I could still share the experience with my daughter. I am so lucky to have angels like her come into my life. This is exactly what I want to do…make such a positive impact on people…just like Jenny did for me.

Take care,
Nicole

Thursday, October 28, 2010
Wow, I was just looking back at my journal entries of a year ago…it’s now been a year since I was discharged from the hospital after a long stay following my stem cell transplant. Unbelievable how far I have come in 365 days. And then I think back to where I was two years ago…starting to have the symptoms of two diseases that could have taken my life if I was not treated. The road I have traveled to take me on the greatest journey of my life hasn’t always been an easy one, but…I cannot help to feel victorious, like I have conquered an enemy, and I am so thankful for the talents and knowledge of my doctors that have gotten me to where I am today, as well as the support of my family, friends, co-workers, and perfect strangers that just wanted to help. I know I am so very fortunate to be where I am! Yes, I am not quite perfect (believe it or not!), still having problems with my blood levels, but I do remain in remission, my bone marrow showing absolutely no signs of reoccurrence of Multiple Myeloma. But, my journey has not come to an end just yet (well I won’t quit the journey until there is a cure for me) as my next chapter is about to unfold. I received word today, that I have been accepted into the transplant program at Abbott to move forward with a kidney transplant from a donor willing to give me a kidney. This actually happened so fast, within a matter of hours. I visited with Dr. Bloom for my monthly appointment, discussed my findings from my last biopsy and labs, spoke about the direction the University suggested I take with a tandem allo/kidney transplant and decided that was not the best route for me. He realizes I am truly grateful for what I have been given back by taking control on the cancer, and understands the challenges of what it is like to live day-to-day without kidneys and on dialysis, and completely supports me regaining what I once had…so by the time I waited in the waiting room to schedule my next appointment with him, he had me referred to the transplant clinic at Abbott. The transplant clinic contacted my insurance company for authorization, and by 2 p.m. I received a phone call stating I was accepted, a chart was made and forwarded to a nurse coordinator that will be contacting me tomorrow or Monday to get started. I never expected for this to happen TODAY – Well, I have been fantasizing about a kidney transplant since December 12, 2008 – but felt it was still so far off. I have just taken one giant step toward a functioning kidney…unbelievable. This is so surreal to me, just like hearing the words you are in complete remission. Today has showed me…again…never, never give up hope.

Take care!
Nicole

Saturday, September 18, 2010
It’s been a year since began my transplant journey…one year ago September 14, I was admitted to Fairview for my priming chemo and I stepped into my new life without cancer! I am more than grateful each and every day that my cancer remains in remission. I visited with Dr. Bloom yesterday for my monthly check up. My numbers still look just as promising as prior months, no evidence of the myeloma coming back. I hold my breath each time I have my labs…hoping for the same words to come out of his mouth…your remission remains. So far, so good. On the down side, I continue to have troubles with my hemoglobin and platelets. I will be transfused with red cells as needed when my hemoglobin drops low enough…I am not the most comfortable when my blood gets low, but I know things could truly be worse. Until there is a need for me to put back on chemo, nothing will be done to correct these issues. Next is my 1-year post transplant x-rays, biopsy, and labs on September 30 and results on October 6. I have no reason to believe that the results won’t be in my favor…I am cautiously optimistic that I have truly beaten this cancer! I am planning to celebrate my 1-year anniversary of my transplant by spending the day in Minneapolis at the University, to spend time reflecting on where I was, where I have been, and what the future brings. I was truly given a new beginning, a new life, a new start.

Next weekend, my family and I will be participating in the Race for Research Multiple Myeloma Walk being held at Lake Phalen in St. Paul. I have been asked to include my link with my team’s details on my site for those interested. Copy and paste the following link into your web browser to go to my team’s page for the race:
http://321cure.themmrf.org/site/TR?pg=team&fr_id=1131&team_id=9451
All dollars raised go to research and finding a cure for multiple myeloma. Thank you for your support.

Take care,
Nicole

Tuesday, August 10, 2010
I visited with Dr. Bloom today for my monthly check up. Ten months post-transplant and my numbers are looking great…I have been named Ms. Remission…love it! There is no plan for any future treatment…Dr. Bloom will continue to watch me and my labs closely, and if my situation changes, treatment will resume. My days have been quite quiet and uneventful…very normal again. It is very satisfying to be me again…I have no complaints. I also see my nephrologist every month as I continue with dialysis. I am hoping to move forward with a kidney transplant in my second year of remission. I am anxious to reach that goal, but I know I have to remain patient…and take one day at a time and good things will happen for me.

I organized a team and participated in the annual Relay for Life event held in Hutchinson this past weekend along with my family and friends to raise money for the American Cancer Society. It was a great event and very well attended. It was wonderful connecting with others with cancer and especially visiting those who have been touch by multiple myeloma…not too many in this area, but there a few of us. I have been asked to be the keynote speaker for next year’s relay event in sharing my cancer journey. There was no hesitation in my answer…I am so excited to share my experiences…in hopes that I can help someone. I will also be hosting a team for the Race for Research Multiple Myeloma Walk around Lake Phalen in St. Paul on September 26, 2010. This walk raises monies for research towards Multiple Myeloma. I will have another opportunity to meet others from the area with the cancer I have. I will be a great experience.

I will continue with my monthly lab work and check-ups with Dr. Bloom. I head back to the University on September 30 for my 1-year post-transplant biopsy and work-up and see Dr. McGlave on October 6 for the results of my testing. I have a hard time believing a year has come and gone since I began my transplant journey. It is crazier thinking that in less than a month, I will have a son in high school and a daughter in middle school. Time is not suppose to go so fast!

Take care,
Nicole

Sunday, July 11, 2010
It has been a while since I updated this site! Things are ok with me. Most days are uneventful and quite “normal”, the very things I was longing for a year ago. I am super grateful for each day that is ordinary! I couldn’t ask for more.

I spent a couple of days in the hospital in June for peritonitis, actually I was admitted on the day of the nurses strike. Abbott would not take me as a patient because of the nurse strike, they were only taking critical heart patients, so I was transfer to North Memorial where Dr. Gray, my Nephrologists, is located. It was a short stay because of the situation with the nurses and because my cell count on my PD fluid was ok. Dr. Gray discharged me after 24 hours of IV antibiotic treatment. I finished my treatment (oral antibiotics and antibiotics I put in my PD solution) at home over the next 10 days and the infection cleared up.

I have also had to have one blood transfusion in the last month. My hemoglobin continues to be problematic as well as my platelets. I discontinued the dexamethasone treatment and the IVIG treatments because they quit being effective after a while. I had a visit with Dr. Bloom last Thursday, July 8, for my monthly checkup. My cancer labs looked wonderful, the cancer is still very well controlled and I remain in remission! Dr. Bloom remedied my dropping hemoglobin by giving me a booster shot of epogen (the chemical my kidneys no longer produce to promote blood growth). I give myself epogen injections on a weekly basic, but the amount I have been prescribed by my nephrologists is not enough. Dr. Bloom will be giving me a booster of epogen every couple of weeks to keep my hemoglobin from dropping, eliminating the blood transfusions. Dr. Bloom and I have decided to wait and see what happens with my platelets. At this time, because my cancer is so well under control and in remission, there is no reason for me to resume a chemo treatment (because there is no cancer to treat!) From what I understand, the next thing to try to get my platelets to grow would be to have my spleen removed. Because I can function with low platelets, and resuming chemo would be the main reason to needing higher platelets, I have decided the wait and see approach is best.

I return to the University on Wednesday, July 14, for my 9-month post-transplant appointment. I just have blood work, x-rays and see Dr. McGlave, no biopsy this time around, which I am thankful for. I am expecting the appointment to be not very eventful, but will get Dr. McGlave’s opinion on my platelet situation, to make sure I am doing the right thing.

Take care,
-Nicole

Thursday, May 13, 2010
I can’t believe it has been a week since I saw Dr. Bloom! And I can’t believe it has been a year since I left work to start my transplant journey. A year ago, I had so many uncertainties and was fearful of the unknown. I am so grateful to be where I am today. I have come a long way…I am at a good place and hopeful for my future.

It seems that the IVIG treatment is what I needed to promote platelet growth and have consistent hemoglobin. Dr. Bloom recommended I continue with the IVIG treatment every three weeks for the unforeseeable future…just another treatment to fit into my routine. My labs continue to look great…no cancer…wonderful news to me. So Dr. Bloom’s plan is to continue with the IVIG treatments, weekly dexamethasone and checkups every four weeks…I can’t complain. I am starting to almost feel stable with my good luck for the past few weeks!

Take care,
Nicole

Thursday, April 29, 2010
I have some awesome news…I am going up on my rollercoaster ride

Today was lab day…Every time I had labs since I started my IVIG and steroid treatments, my hemoglobin and platelets have dropped, BUT today I received different results. My hemoglobin was 12.1, up from 11 last week and my platelets were up to 23,000, all the way up from 11,000 last week. The dexamethasone and IVIG treatments are working! I briefly spoke to Jaime (Dr. Bloom’s nurse) and she was so pleased. I will continue with the same treatment for now and find out if there are changes when I see Dr. Bloom on May 6. I am hoping I continue on the upward trend…I am so ready!!!

Saturday, April 17, 2010
Well, I have landed myself in the hospital again. This time for two units of red blood cells and
IGIV therapy, so it will just be a day stay. I had my six month post-transplant checkup at the University this last Wednesday, April 14. The good news is that my labs for my cancer show nothing of significance. Unfortunately, I did walk away with a “to do” list. I have developed a “spot” on my left lung again, similar to the one I had when I was in Abbott last March. I am having no symptoms of being sick, so for now it is something that will be watched and I will be put on antibiotics for…so really not a huge issue. I am also anemic again, which is being taken care of today with the two units of blood. My platelets also continue to be consistently low, for which I am on steroid therapy for, from a condition I have developed called Idiopathic thrombocytopenic purpura (ITP). IPT is a bleeding disorder where the immune system destroys platelets, causing me to have too few platelets in the blood. What it happening, is the antibodies are attaching to my platelets and the spleen then destroys the platelets that are carrying the platelet coated antibodies. My body is also testing low for Immunoglobulin (antibodies), which means my immunity level is low. Dr. Bloom has now started me on IVIG therapy every three weeks to give my body the antibodies it is missing. This in turn will help my immunity, hopefully to fight off the antibodies that are attaching my platelets and red blood cells…and the problem of the low platelets and low hemoglobin will be solved. I am now done at the university until my one year post-transplant check up in October 2010. I have had some ups and downs with dialysis as well over the past few weeks. My labs show that my kidneys are working a little better (a HUGE YIPPEE), so my dialysis began too much. It took my renal team a while to adjust my dialysis, so I was dehydrating myself for a few weeks. Now that they have me a on a new prescription for dialysis, I seem to be less dehydrated, but feel like it could be adjusted more. I see my renal team this next Thursday, so I will expect changes then.

I am still working at Ridgewater, and even my job there has returned to normal…it has gone to nice to being back….to being crazy, busy, without a moment to think about anything but work. It is good, because I don’t dwell the things that are wrong with me…I feel completely normal there…I am distracted. The hours, days, and weeks fly by so fast! But on the other hand, it is very hard to manage my illnesses working full-time, to fit in phone calls, appointments, etc. I am not sure I would like it any other way, if I had a choice.

Tristan and Talea are doing awesome…I am so proud of both of them. They continue to show me so much compassion, support, and care…it makes my heart melt! I have two of the best kids anyone could ask for. Talea will be competing in her dance competition on May 7 & 8 in Eden Prairie…four dances with her class and one duet with a good friend, and then it is the big recital weekend May 22 & 23 in Hutch. Tristan has started his track season, with his first meet on Monday, April 19. He is excited for track this year, because he is among the oldest on his team…so the younger kids are looking up to him; he thinks that is pretty cool. Tristan will be taking drivers ed this summer…that makes my head spin, there should be no way my Tristan should be old enough to take drivers ed…wow!

I still believe each day will be better than that last…and these challenges that are presented to me, will make me a stronger, smarter, more tolerant person than I was. I am hoping that one day, I will feel healthy again…I will take any amount of time…I am not too greedy. I do believe things could always be worse!

Take care,
Nicole

Sunday, March 21, 2010
I made it through my first full week back at Ridgewater…it was absolutely fantastic to be back at work. It was the most incredible feeling Monday morning to walk back into the place I left months ago with so many unknowns…so many uncertainties. I made it back…cancer free! It felt amazing. Karen, the most incredible co-worker and friend one could have, had balloons and flowers at my desk. She also organized my co-workers to bring in treats to share in welcoming me back. I work with the most amazing and caring group of people…I honestly do not know what I would have done without the support of my Ridgewater family. They helped me through the most challenging time of my life…I am so grateful for everyone’s support. I am so delighted to be back, part of my work family again.

The week was not without its challenges though. Wednesday after work, I went in to the clinic in Hutch because my cold still is not any better. I thought while I was there I should just have my weekly lab work done and sent to Dr. Bloom. When my labs came back, my hemoglobin was down to 6. (No wonder I was tired all week…I didn’t think I should be that tired just by going back to work). Of course, the Nurse Practitioner and the on-call doctor wanted me to go to Abbott right away for a transfusion. I refused. I was not going back to the hospital…my life was “normal” again. I opted to call Dr. Bloom Thursday morning to get blood ordered to Hutchinson. This was the slow way of doing things, but it kept me out of Abbott. The blood arrived Thursday evening, so I went into the hospital in Hutch around 7 p.m. and received two units. My doctor did not want to fluid overload me, so I went back Friday after work and got the rest. Dr. Bloom stated he feels my hemoglobin dropped due to a number of reasons…my kidneys failure (not getting my epogen shot regularly because vacation and going into the hospital), recovering from the transplant yet, the virus I am still fighting…my body just isn’t producing blood as it should be. Receiving the transfusion and getting back on regularly scheduled epogen will help regulate my hemoglobin levels again. Just another bump in the road of life…I am sure the coming weeks will be quiet again.

Take care,
Nicole

Friday, March 12, 2010
It was a long waiting day yesterday waiting for blood cultures, blood tests, and bone marrow biopsy, but in the end I received the best news possible, which I am so appreciative for. First, the best news, there was absolutely no cancer found in my bone marrow, so my platelets were depleted by the cold/virus I have…being I don’t have a reserve like normal people, it didn’t take much for the fevers to eat up what platelets I had left. Now that the fevers have stopped, I have seen my platelets jump to 7,000 before leaving the hospital yesterday. Dr. Bloom decided not to transfuse me because of the rapid turnaround I was having, along with the history of transplant so far, and the troubles I have had with platelet transfusion…the less transfusions I have the better off I am in the future. I just have to be careful about what I am doing…restrictions on heavy lifting, stretching, exercising, shaving, etc., until my platelets start increasing to an acceptable level again. I will be taking high dose dexamethasone to aid in platelet production for just three days, and go in for follow up blood work to watch levels…and go from there. But yes, the absolute best news is that none of this was caused by my Multiple Myeloma…because my remission continues…something I cannot be more grateful for. So, I will still be returning to work on Monday…YIPPEE…I am looking so forward to it! And life in the Glesener house will continue to return to normal, this was just another small bump in the road of life!!

Take care,
Nicole

Wednesday, March 10, 2010
Everything was going so well…just as it was suppose to until I got my first head cold about two weeks ago. Whatever virus I have, has held on causing fevers and causing the platelets (going from 22,000 to 2,000) I had to deplete. So, I have been admitted to Abbott again to figure out what is going on. I was last seen at the University on February 23 and put me on my anniversary visit schedule as my platelets were producing on their own again and I was feeling great. We left for Key Largo, Florida on March 3 for our family vacation and celebration…I checked with all my doctors and they told me not to change our travel plans because of my cold…but we did not think the fevers would continue either. So, after a great week in the Keys (I pretty much rested on the beach while my family played), my family dropped me off at Abbott before they returned home. So, today I had a bunch of test ran to figure out where my platelets are going. Tomorrow morning test results will start returning, so I know how to move forward, again. I will post more when I have more information.

Take care,
Nicole

Friday, February 12, 2010
I just wanted to post a quick update for anyone still reading my blog. I have been feeling pretty well for the past weeks, since I was released from the hospital on January 23. The areas on my body where the shingle outbreaks occurred are still painfully sore, but my doctors said it could take weeks or even months to heal. I will be on meds long term for the shingles to prevent any kind of secondary outbreak. I met with Dr. Bloom on January 27th…which was a great visit. The plan moving forward is simply blood work every 6 weeks to watch my free kappa light chains—the part of my blood that was so outrageously high when I was first diagnosed but it was also the free kappa light chains that were knocked down to nothing with the oral chemo therapy (Revlimid) and steroid therapy (Dexamethasone), setting me up for a favorable stem cell transplant. We also talked about starting a maintenance dosage of Revlimid for a “longer term” remission once my platelets recover…but that will wait until my platelets increase to an appropriate level. I did have a set back with my counts with the shingles outbreak…but is what viruses do.

I have decided to return to work on March 15, 2010…I am feeling like I have my strength and endurance back to add working into my life again. I was feeling like there was one thing missing…a void that needed to be filled again, it turned out to be my place at Ridgewater. I am truly anxiously waiting to return. My Ridgewater family has been so supportive of me and my family during the past year…with the money they raised for us (not once, but twice), the flowers sent during my hospitalizations, the meals donated, all the co-workers that donated vacation hours, the blanket that was embroidered for me (that blanket has been with me through all my journeys and has seen A LOT), and all the cards, phone calls, emails, thoughts, encouragement, prayers…it all makes a huge difference and has truly helped me dominate and get through the battles I have faced. I am truly looking forward to returning to be with all the wonderful people of Ridgewater College.

My two biggest joys of my life, my children, are doing so well. Talea is enjoying her second year in High Tides swimming, her seventh year of dancing, and her newest adventure is playing the flute for the first year. She has come so far with her lessons…improving so much and we enjoyed the first 5th grade band concert the first week of February. I absolutely love to listen to her play. She is by far my little caretaker…she is by my side whenever I am not feeling well…she has been with me through a lot…and with me the moment she comes home until bed time. Tristan is thriving in his first year of wrestling and doing extremely well with the sport. He has wrestling on the Middle School Team, the 9A Team and also on the JV Team. As a mom, I was terrified the first time I saw him out on the mat ready to face his opponent, but after a quick first pin, I relaxed and am learning to enjoy the sport…I am by far his biggest fan. Tristan is my dialysis partner…he takes care of transporting my supplies up from the basement two stories to my bedroom (the solution boxes weigh about 25 pounds each)…he does this each and every night. If he sees me carrying the boxes, he scolds me and reminds me I have no business doing that…puts me in my place! Tristan has matured so much over the past year and I so enjoy talking with him…he too has been my rock.

Clint is also doing well…still working at Jay Malone Motors and seems to be busy. He is looking forward to resuming to basement remodel this weekend…I am soooo excited for that!!! He is happy our lives are slowly, but surely returning to somewhat normal…I can see the stress and worry has lifted from his shoulders a bit, he has relaxed a little, now that I am in remission. It has been a hard, challenging year for him too…and I am so appreciative and thankful for all he has endured and taken on to get me to where I am today.

I have learned to enjoy each and every day…I am so grateful for the days that have been given to me and the second chance at life…the greatest gift of all. I keep smiling, laughing, loving, fighting, enduring, living…but mostly just enjoying it all. I hope you do too.

Take care,
Nicole

Thursday, January 21, 2010
Wonderful news yesterday…no cancer was found in my bone marrow or labs. I am so grateful and relieved of the news. Now, I will have anniversary visits at the University (6 months, and yearly thereafter) and return to my normal oncologists for care. I see Dr. Bloom on Wednesday, the 27th, to talk about moving forward and managing this disease long term. Last week I also had my catheter removed because I am not requiring frequent blood or platelet transfusions. I am so happy to have it removed…one less tube protruding out of my body!

I was also hospitalized yesterday for dehydration and shingles. I was not feeling well last week…I was very tired and I was not keeping anything in. On Saturday, I noticed a rash on the right side of my back, under my right arm and on my left hip. I went into the clinic and they diagnosed me with shingles. Shingles are not abnormal for post-transplant patients to get because they are immune suppressed for up to six months after transplant. They gave me an anti-viral medication for the shingles, which would have taken care of it, but because I was vomiting so much, the medication was not being absorbed. When I went in for my appointment with Dr. McGlave yesterday, he decided to hospitalize me for IV meds for the shingles and fluids for the dehydration. I am feeling so much better today after receiving the treatment. I will stay in the hospital until Saturday until the shingles are under control. I have a severe case because the shingles are in two areas of my body, so they want me to have a full 48 hours of IV therapy. This is just a small bump in my road of recovery…and this too will pass. But, it not fun being in the hospital and away from my family again. At least this time, it is a short visit!

Take care,
Nicole

Tuesday, January 5, 2010
Wow, one year ago today I was diagnosed with cancer…I remember feeling so hopeless, angry…like my life was over and there was a short future for me. But one year later, I am not angry, or hopeless and I absolutely do not feel like my life is over…I am doing as well as possible…just like Dr. Bloom told me, one year ago. It has been a long and sometimes challenging journey, which will continue into this next year. I have my 100 day anniversary visit at the U next Monday, which means labs, full skeletal x-rays and a bone marrow biopsy. After the workup on Monday, I do not return to the U until January 20 for the results…I am anticipating a long ten days of waiting to hear if I remain in remission. Last week, I found out my platelets are starting to produce on their own…that is what I have been waiting for. I am delighted that my labs are resembling “normal”. So, things are moving forward…I still tire easily and stomach issues remain…but I believe I am still gaining strength and energy each week. My next goal after January 20th, is to decided if I should return to work earlier than expected…maybe by March. I feel it is time.

Thanks for checking in,
Nicole

Wednesday, December 9, 2009
It’s been a while since I last updated. Things are going well…just a few bumps in the road over the past weeks. My doctors are very pleased with the way things are progressing. My platelets have finally stabilized, which means I have not had to have a transfusion for two weeks. My doctors tell me now that my platelets have stabilized, they should start producing on their own. Once that happens, I will be down to anniversary visits at the University and my care will return to my regular oncologist, Dr. Bloom. I have my 60-day anniversary visit, next Wednesday, December 16. I cannot believe it has already been 60 days since my transplant! And I really can’t believe it has just about been one year since I started this journey…it was December 12, 2008 when I was admitted to Abbot with kidney failure. The things I have come to realize and learn…Time truly does pass by quickly!

Enjoy life,
Nicole

Wednesday, November 18, 2009
It has been great to be home…things are returning to normal and we are finding “routine” again. There was one time when being back to normal seemed so far away. I so am thankful for everyday. I am feeling stronger and regaining my energy, a little more each day. I was at the clinic yesterday, all my blood work looks great and my doctors are pleased with my progress. My platelets are still irregular, so when they drop too low I will require a transfusion. I went for a platelet transfusion today. Platelets are the last of the blood to start producing after a transplant, so what I am experiencing is not abnormal. I just have to be patient for them to come around!

Take care
-Nicole

Wednesday, November 11, 2009
I am back in Minneapolis at my clinic visit today. My hemoglobin is low (due to my renal failure), so I am getting 2 units of red cells. I also visited with Dr. McGlave about my test results from Monday…the Multiple Myeloma is completely gone…no trace anywhere in my body, which means the transplant was a great success! He also gave me clearance to move back home and reduced my clinic visits to 2 days a week. My blood (white count, red count and platelets) have stabilized and the continued nausea I am experiencing is very normal. It is due to the chemo and the mucositis and will take weeks yet to heal. I am so satisfied with the outcome of the day today…actually I am ecstatic…I feel like things will be ok now. I am so excited to finish with my transfusion this afternoon and go pack my things from the apartment and go home!!!

Take care
-Nicole

Friday, November 06, 2009
I had my clinic visit early this morning and everything looked good again except for my platelets. So I had to get a platelets transfusion…I haven’t needed one for a week, which is excellent. Since things are going so well, they gave me the weekend off, so I was able to travel back to Hutchinson by noon today. I will stay here until Monday morning and then head back to Minneapolis for the anniversary testing (blood work, bone marrow biopsy, x-rays). I am feeling about the same as the last few days…still tired and nausea, so it will be a quiet weekend. That’s ok, I am just so grateful and thrilled to have the weekend at home with my family

Enjoy your weekend
-Nicole

Wednesday, November 04, 2009
Things have been going all right the last couple of days. I have had clinic visits each day and my blood levels have been excellent…within normal ranges. Some of my minerals have been low in my body, due to the dehydration, but they just give me what I need via IV and it brings my levels up. I saw Dr. McGlave today (my primary BMT Doctor) and he said I was healing on schedule and thought I was doing great…but the nausea and stomach problems I am having could take weeks (4-6) to return to normal. I am feeling more myself everyday…and my energy is slowly returning. Next week, Monday, I will have my 1st anniversary (one month) testing, which includes bone x-rays, blood work, and a bone marrow biopsy. I will then see Dr. McGlave again on Wednesday for the results and also to start the conversation about making the transition back home. I am very excited for Wednesday.

I felt pretty good after my clinic visit today, so we went out to the Olive Garden for supper and then went to do some grocery shopping. Tomorrow, I am planning to take my mom and Ernie to the Mall of America (just for a short visit)…they have never been there before…I am excited to show them something new! It has been wonderful this week spending time with my mom and stepdad and getting reacquainted. Another silver lining to this experience!

Take Care
-Nicole

Monday, November 2, 2009
I was able to spend the weekend with my family in Hutchinson…it was absolutely wonderful. My clinic visits have ended up being every other day, so I last had clinic on Saturday morning. My dad brought me to Minneapolis on Saturday morning for my appointment and then I went back to Hutch the rest of Saturday, Sunday and this morning. I am back in Minneapolis now and will be here until Friday. My mom and step-dad, Ernie are with me this week. I have been feeling ok…still very tired, so I sleep a lot, but I was told that was to be expected. I also have had a touch of dehydration this morning, so I am happy to be seen by my doctor today. I have had a lot of nausea this weekend and haven’t been able to eat or drink a lot without getting sick. My doctor says the continued nausea is normal…side effect from the chemo and the terrible mucositis I had. She will treat me with meds to get through it…and hopefully it will be better in a couple of weeks. Other than that my blood levels look excellent, all my counts have now recovered (white, red, platelets) to normal levels. I have to remember to take one day at a time…take it slow and keep pushing the fluids. Each day is a day closer to returning to home permanently!

Take Care
-Nicole

Thursday, October 29, 2009
Yesterday was almost a dream. My dad picked me up from the hospital about 2 p.m. and we went to the apartment. With nothing really to do, we decided to drive to Hutch to surprise Clint, Tristan and Talea. I figured what was the difference if I rested at the apartment or in the car driving. My family had no idea I was coming home and looks on their faces were priceless. It was unreal seeing my house and my animals again. Then my daughter and I had to make the Walmart run to get some things for the apartment, and soon after it was time for me to head back to Minneapolis…we got back about 10:30. The time went fast, but it was well worth it. Soon home, and being with my family will be my normal again and I will look back at all this and think how grateful I was to have the treatment, but never forget how hard it was physically and emotionally.

Take care
-Nicole

Wednesday, October 28, 2009
It is happening…I am being discharged today. I am just waiting on orders from the doctors and my dad to get here to take me to my apartment. I cannot believe this long stay is hours of being behind me…it seems surreal. My dad will be my caregiver this first week, taking me to my clinic visit, which will start tomorrow already. I know tomorrow at clinic I will have to get platelets, and IV antibiotics, so I will be there about 3-4 hours. I am hoping to get back to Hutchinson for the day on Saturday, for Halloween, but most of all to see my home and to see my Charlie and Tessa that I have not seen in so long. Wow, that seems like a dream too…I will never take another thing for granted. I am so grateful to be able to receive the treatment, but I am even more ecstatic to be able to be moving forward. Life is good.

Take Care
-Nicole

Tuesday, October 27, 2009
Ok, I am being cautiously optimistic…trying not to jinx anything. My fevers have not returned and nothing has grown from the cultures, so my team of doctors agreed to DISCHARGE, yes, DISCHARGE me tomorrow afternoon…IF the fevers do not return. I feel pretty good…I have been taking a lot of walks…it feels good to get out of my room, to have some freedom. I even walked outside today for the first time in three weeks…didn’t stay out long…a little chilly and windy for me, but the fresh air was good. So in the coming weeks, I will be seen in the clinic on an outpatient bases. Daily appointments to check lab values, doctor visits, replace blood/platelets when needed, and get IV meds as needed. This will go on for the next 4 weeks or so…maybe I will fly through the next steps. I would really like to home by Thanksgiving.

Take care
-Nicole

Sunday, October 25, 2009
They have determined where the fevers are coming from. I woke up this morning with another about 3 a.m. of 103. They took me for chest x-rays and a chest CT and it turns out I have some type of pneumonia in my left lung. They have me on antibiotics to treat pneumonia but I will be having more testing tomorrow to figure out exactly the strain I have so they can adjust antibiotics, if needed. I think if I would not have this now, I would be discharged very soon, but now who knows. I am still hopeful that it will be this week, I can’t be in the hospital much longer. Clint, Tristan and Talea were here until 4 p.m., which made it a great weekend.

-Nicole

Saturday, October 24, 2009
I have been fighting back this week. My counts have returned, mouth and digestive system is healing, and my platelets have been hanging in there. I did have some troubles with dialysis on Thursday, but they are treating me with antibiotics to ward off any infection. I also had a fever yesterday and today, which they do not take lightly. I was given more antibiotics and it seems to be gone…Thankfully! I am so ready to get discharged…I am hoping by Wednesday. This hospital room keeps on seeming smaller. Clint, Tristan, and Talea are here today and tomorrow. My mom, dad, and in-laws were all up this week too. I never realized how much I loved my family…really! Thank you for all the encouraging words and messages, they really mean so much!

Tuesday, October 20, 2009
It has taken me days to get this posted…The last few days all my side effects have gotten much more painful. I have not had the strength or willingness to log on to give an update…I do a lot of sleeping, which, I am thinking I need more than ever now. My counts have dropped, and now today, I found out have reached 3, and that means my white counts are coming back and I should get more strength and less pain each day…am ready to take it one. Sorry this is short…but I must sleep now. Thank you for all the encouragement and support!

-Nicole

Tuesday, October 13, 2009
Yesterday and today have been very difficult with the side effects of the chemo. I am not feeling well…the mouth sores are terrible. It is hard to talk, open, move my mouth or eat…the pain extends down my throat to my stomach. I am not able to eat any longer due to the mouth pain and if I am able to get anything down, it comes up. So, they transitioned me to IV nutrition last night to make sure my body stays strong enough as my counts continue to drop. My counts have gone down, but they are not near the bottom. I will be miserable until the counts start to rebound…maybe Thursday. At that point (Thursday) I will start again on the growth factor shots to promote the growth of my stem cells. I have a mountain to climb, and the days have not gotten any easier, actually they have been the hardest days so far. The doctors are doing a good job at keeping me comfortable and medicated to help with the pain and nausea. The days are slow and I am having a hard time accepting it is going to be a while before I open the next chapter. Dr. Bloom, my oncologist, visited me yesterday and reassured me that I did the right thing…that the time I am taking to do this is a tiny part of my entire life and the pay off in the end will be priceless…this disease will get knocked out and will not control my life. My dad also spent the afternoon and evening with me…thank you dad, you came at the right time!

Take care
-Nicole

Sunday, October 11, 2009
The transplant went relatively fast…all three bags went in over about an hour. I feel exhausted, achy, tired…just what was expected. Now today, I am feeling the mouth sores coming, not very pleasant. Clint, Tristan and Talea are still here, so I will be able to spend the day with them today, before they head back to Hutch for school and work. It looks like I will be here (in the hospital) for the next 7-9 days…until my white count drops and comes back up and some of the side effects of the chemo disappear. There will be some tough days ahead.

Take Care,
-Nicole

Friday, October 9, 2009
Today was my day of rest before the cells are transplanted tomorrow. The transplant is due to begin at 11 a.m. with my blessing ceremony starting at 10 a.m. I am so excited, it feels like it has been a struggle getting this far. I had some nausea today, to they treated me with a medication that took care of the nausea, but also made me sleep the entire day. It was fine, because it made the time pass and by the time I woke up…my family was on the way. Clint, Tristan and Talea came down with my dad and Gwyn…this way Clint can just use my car while I am in the hospital and it alleviates trying to find parking for him during this homecoming weekend at the U. It was another happy reunion…and I am comforted having them so close, even though I cannot be with them 24/7…they are just 4 blocks away from me.

Talea sent me this poem, which I thought is so fitting and worth sharing. I tell you, my little girl has so much heart…she just amazes me.

HOPE
It’s magic and it’s free
It’s not in a prescription
It’s not in an IV
It punctuates out laughter
It sparkles in our tears
It simmers under sorrows
and dissipates our fears
It’s reaching past today
It’s dreaming of tomorrow
It’s trying a new way
It’s questioning all the answers
And always seeking more

Good night,
-Nicole

Thursday, October 8, 2009
The PD fluid culture came back negative, so, I have the chemo in my body…yippee! I am so happy to be moving forward. So, far I am feeling ok, but it has only been 3 hours. The biggest side effect from the Melphalan is mouth sores, which will start in 2-3 days…gives me something to look forward to Nausea is also a side effect, but they are medicating me, so I am hopeful I won’t have to deal with that. I am also hooked up to IV fluids for the next 24 hours, so it will be challenging for me to leave my room. That is fine…I am just ecstatic to be moving forward! Oh, the things that make me happy these days!

Take care
-Nicole

Wednesday, October 7, 2009
I checked myself in to the hospital yesterday. I am still having pain in my left side, so since I have been here they have done additional testing and have ruled out heart problems, pulmonary embolism, bone fractures/lesions and my blood cultures have not grown anything. I just received word that they will be culturing my pd (peritoneal dialysis) fluid to look for peritonitis at 1 p.m. today and if the culture does not show anything, I will start the chemo tomorrow. Things it could possibly be if the pd fluid is clear: a pleurisy (inflammation of the lining of the lungs) or muscle/nerve strain. I am so anxious to get started…and I am also feeling frustrated with myself to have this set back, causing this to be prolonged. All I want is to get started… to start the countdown to coming home. The doctors agree, they do not want this to be prolonged either, but they do not want me moving forward if it unsafe to do. So, they promised as soon as every serious condition has been ruled out, I will move on. Believe me, it cannot start soon enough.

-Nicole

Monday, October 05, 2009
I had a fabulous weekend at home…It was wonderful waking up in my own bed four mornings in a row. Just being with my family and pets! I actually felt quite normal…like I was never gone, just got back into routine. It was a quiet weekend…lots of family time. I could not ask for anything more. I held on to every moment…I will be so grateful when I am back home for good. Of course, Monday morning came all too fast…it was really hard to say good bye again to the kids, Clint, and my pets and drive out of the driveway…I did not want to do it, but I know coming back here is what will get me home for good. I arrived back to Minneapolis about 11:30 and checked in at the clinic. I am having an agonizing pain in my left side…chest, back and arm. They did a bunch of blood work and a chest x-ray, which did not give them any answers. So far, everything is still a go for tomorrow to be admitted. My outpatient doctor was going to talk to my inpatient doctor about more testing tomorrow to get to the bottom of the pain. So, I am really hoping this does not postpone the chemo and transplant. I am so ready to move forward with this transplant.

Take care
-Nicole

Thursday, October 1, 2009
After three days of collections…15 hours of sitting, I was able to exceed my goal of 5…almost made it to 6. Anyway, this means everything is in line for transplant, which is officially scheduled for Thursday, October 8. I will be admitted on Tuesday, October 6 for chemo, Wednesday, October 7 will be my resting day and on Thursday my cells will be transplanted back it to me. I am so thrilled that I have made it to this point…and even more eager to move forward. Some more good news, because all my labs are in order and I am fairly stable, my doctors are giving me a weekend off, so I will be heading home to Hutchinson for the weekend. I will be leaving here shortly and then stay at home until Monday morning. Monday afternoon, I will have to report to the clinic for labs. Then, I will have to get packed for my two week hospital stay.

Fortunately, the awful bone pain that I have had will start to go away, because I no longer have to receive the growth factor shots as I have enough stem cells collected. The fevers have also subsided. I am still quite nauseous, but they gave me new meds to try today…so hopefully they give me some relieve. I think I will have some brighter days ahead, until, I am admitted for the chemo…then all the agony will start again…but it will be the final run!!! I am beginning to see light at the end of the tunnel!!!

Have a great weekend!
-Nicole

September 29, 2009
To my surprise, when I went into my clinic visit on Sunday, September 27, my white count rebounded high enough to start the next step, harvesting. I harvested yesterday for 5 hours. I will find out this tomorrow morning how many stem cells I harvested yesterday and if I need to complete another session to reach my goal of 5. Once, I have enough stem cells harvested, I will be scheduled for transplant, probably next week. My weekend was wonderful again…my family was here and stayed. We took time to explore the bike trail down by the Mississippi River on Saturday afternoon and Saturday night journeyed to a shopping center to do some shopping. Sunday we explored the new gopher stadium…we are so close, we had to check it out! Otherwise, Sunday we took the time to have much needed quiet family time together…but the time never slows down, just goes so fast and before I know it is time for them to head back to Hutchinson.

I have been feeling about the same…the bone pain, fevers, nausea…all which will end when the growth factors shots are stopped. Also, Sunday morning I started losing my hair. I was shocked at first to see it all come out. My initial response was that I wanted to hold on to it for as long as I could. But, by yesterday morning, I was so sick of seeing it come out handful by handful, but did have time to deal with it as I had to be to the clinic by 7:30. So, when I returned home yesterday evening I took control and got rid of the rest. It was a relief to have it gone…no more wondering how long it would take to all fall out, and I made the decision. It is kinda strange…I realized it was my hair that was making cancer easier to deal with…I realized having hair made me look like I did not even have cancer to the people I was passing on the street. Well, not no more…but I feel like it is time. I was prepared, Talea and I had so much fun shopping for hats and scarves over the past month that I will be able to start wearing. And I can only imagine how much time I will save in the morning preparing for the day. I am also looking forward to shopping for a wig and picking out a style I would never otherwise have. Life is not so bad after all!

If anyone is wondering about the entry to Mrs. Kaminsky’s class above…There are some rumors going around at Talea’s school that I am dying. In working with the school counselor, I offered to let her use my web site as a tool to talk with the class about my family’s situation to explain to the children that even though I have been gone for a long time, I am being treated and will return home. So when she goes to talk with the class, she will pull up my site to read my message to my daughter class and hopefully this will help the other kids understand.

Take care,
-Nicole

September 24, 2009
My white count has been below zero yesterday and today. Now, I wait until it rebounds to at least 0.5 for them to do the blood test to check how many stem cells I have in by blood stream. I am really hoping to be harvesting by the end of next week and back to the hospital the week after for the transplant. Time will tell.

Yesterday, I felt pretty good…no nausea, no fever, adequate energy. I got restless in my apartment yesterday afternoon, so I went out for a long walk…down University Avenue and back to Washington Avenue to the bridge. I was relaxed by the time I got back! Today, on the other hand, I have been so sick again. I came down with a low fever overnight, woke up this morning vomiting and I have a lot of bone pain again (this time on the left side), which all has continued throughout the day. I managed to make it in to the clinic (grateful my appointment was at 7:30 a.m.). My doctor was not concerned about a new infection starting because of the IV antibiotics I was treated with the last 3 days. The bone pain is just moving around, as expected. He did give me a different medication to help treat the nausea. Really, once the growth factor shots stop, I will feel better…that is until the next round of chemo. And of course I have to find the positives: the growth factor shots will stop once the harvesting is done, things could be a lot worse and I still have my hair

Yesterday is history
Tomorrow is a mystery
Today is a gift
That is why we call it the present
Babatunde Olatunji

-Nicole

September 22, 2009
Happy Birthday Tristan! It is Tristan’s 14th birthday today. I was fortune enough to celebrate with him over the last weekend. It does make me sad knowing I cannot see him today, it is the first birthday I have ever missed…just one year though. We had a nice weekend together…the days flew by. Talea was so excited to stay overnight at her new home. Both the kids loved cooking in the kitchen. In fact, Tristan asked to cook his own birthday supper on Sunday night instead of eating out.

I was feeling really good until Saturday afternoon when some side effects of the growth factor shots (shots I am given each day to promote my stem cells to travel out of my marrow to my blood) started happening. I noticed it was getting hard to breathe, talk, laugh, etc. and my bones in my right side were hurting. I also started running a fever. Because I go to clinic every day, I saw my doctor 8 a.m. on Sunday Morning. She was worried I had air in my right side because of a punctured lung from the line placement (which is a common risk of a line placement and it can take a couple days to show up). She did a chest ray…ruled it out and came to the conclusion that when I breath, my lungs push on my bones and cause the pain. The bone pain is temporary…as soon as I stop the growth factor shots, it will go away. I will be on the growth factor until I have enough stem cell collected.

Friday afternoon, I had to receive a blood transfusion because my hemoglobin was low. Also, on Saturday morning, I had to get platelets. They do not like your platelets getting below 10,000, so when they approach 10, 000 they give you a transfusion. I am schedule for another today. Yesterday, I was back in the infusion room getting IV antibiotics. They treated me because I was running a higher fever and had chills, they worried I had something brewing. I have been spending a lot of time in the infusion room lately! Actually, I usually end up being at the clinic 3-5 hours a day.

Today, I go in at 1:30 for my labs and visit with the doctor and platelets after. I will also get a better picture of what the rest of the week will look like. As soon as my white count drops below 0 and recovers, they will do a blood test to see how many stem cells I have in blood to determine when they can begin harvesting. Yesterday, my WBC was 0.1…I am hoping today it will be negative. I am anxious to get started with the harvesting…once I harvest, I will be scheduled for transplant. And the countdown begins to come back home!!!

Enjoy your day!
-Nicole

September 18, 2009
I am settled into the apartment, my home-away-from-home. It is actually very comfortable; I can truly say I will enjoy not having so much to clean….I have to find the positive! If anyone is interested (it would be easier to send things to my apartment then to the hospital and I will be having my mail picked up and brought to me when I am admitted again) my address is:
Nicole Glesener
Argyle House
920 Delaware Street SE
Apt. 1005
Minneapolis, MN 55414

I started to feel more myself yesterday afternoon, before I was discharged. The kids and Clint came down with the rest of my stuff and helped me get settled in. Tristan and Clint helped upload the car, and got things in the rooms in the apartment. Talea had a great time deciding which room Tristan and her would stay in, which was mine and Clints; the bed assignments and making the beds. She also got my dressers and closets organized and unpacked. We also had to do the grocery run, kinda like setting up a new household…all the little things you need for everyday living. Then we came back to the apartment, made dinner, enjoyed an hour or so together before they had to head back to Hutchinson. Actually, yesterday was the best day of the week so far. I was feeling (I think we all were) so normal and happy by the time they left…it is always so hard to say good-bye, no matter how many times we have done it, it has not gotten any easier. After they were gone, the apartment got so quiet; I am so not used to being alone. I took the time to return phone calls and do some reading, which I never do enough of! I know each day takes me a day closer to transplant day, and each day takes me closer to reaching my goal and returning home.

So far today, I feel pretty normal, which I am super grateful for. I have a clinic visit today (a daily ritual for now on) where they check all my levels and basically a check up to see how I am doing. I have to get a parking pass for parking at the U and at the ramp across from the apartment for Clint. We have spent more on parking in the last couple of weeks…and I thought Ridgewater was bad That’s about all I have planned for the day. Tristan, Talea and Clint will be coming down again tonight to spend the weekend. I am so excited!

Enjoy your day!
-Nicole

September 16, 2009
The last couple of days have definitely been challenging to me, I miss my family immensely. I will get to see them all on Thursday, as they will be coming down to get me out of the hospital and moved to the apartment. The chemo on Tuesday did not go so well. I got sick immediately from it and just never recovered. They had to do a hemo dialysis run after the chemo was administered, which got me even more sick. I was asking myself why am I doing this, especially when I was too weak to pick up the phone to talk with my kids or family. I have to believe that the days will be better….but I am sure worse once they hit me with the second chemo in a couple of weeks.

Today, Wednesday, I slept most of the day away. I am very tired and it is really hard to do a lot of the things I am used to doing, like updating this blog. I hope I can shake this, and resume more of an active life….One bright thing….I still have my hair
-Nicole

September 14, 2009
Tough day today…actually, it sucked! First, I said goodbye to my family, which, by far has been the worst thing I have done since this has all started. My heart just aches when I think about not being with them for the next months, tucking them in, helping then with homework, making dinner, waving good-bye when they get on the bus, hugging and kissing them and sharing the laughter…my kids could make me laugh! But on the other hand, I am lucky to have the time I was given to be at home this summer and even more fortunate to be receiving the treatment that will take me into the rest of my life. Yes, I realize I will see them at least once a week, but it will be here, in a strange place…nothing like home.

Once I arrived at the hospital this morning, I was taken in for the catheter placement. Another procedure done under conscious sedation…not the best feeling in the world, but I got through it. I was moved up to the transplant floor after it was in. After the sedation meds wore off I was in a lot of pain (like I normally experience after this placement). It took the remainder of the day for all the attendees, fellows, specialists, and transplant team to come up with a plan on how to move forward with the process. So, I just started my chemo at 8:30 p.m., which will be done at 10:30 p.m. After the chemo I will have a 12 hour flush, to move it throughout my body. I will then have one run of hemo dialysis and another 12 hour flush after. I should be discharged Wednesday morning, if everything works out the way it is planned.

I am already feeling the effects of the chemo (it’s 10:15) nausea, vomiting, headaches, bone pain, flushing in my face, tiredness…but no hair loss yet I guess it is time for the fun to begin.
-Nicole

September 11, 2009
It is really happening, I have been given a date and time to be admitted to Fairview…Monday, September 14 6:30 a.m. It will be a great way to spend our 13th wedding anniversary I am so happy to have one more weekend at home. Enjoy the weekend!
-Nicole

September 9, 2009
I made it through work up and all my tests came back favorable…so I have been given the green light to move forward. YIPPEE! The first step will be the priming chemo, which will be done as soon as there is a bed open for me in the hospital, hopefully early next week. I will be admitted for the chemo, stay in the hospital 24-36 hours and then be discharged to my apartment. After the chemo, I will wait for my counts to drop (usually about a week), then once they start to rebound, I will have my stem cells collected (week two after the priming chemo). I will have clinic visits each day as well. The week of the 28th I will be admitted to Fairview again, be given a stronger chemo, and after a day of rest the stem cells will be transplanted back to me. At that point I will be in the hospital for 12 (or so) days. Then, I will be discharged again, but remain at the apartment for approximately 30 days (or more) until given the all clear to return home. I am so happy and relieved that the work up is complete again (and commuting from Hutchinson is over…I have no tolerance for traffic!) and I am actually moving forward. I am so anxious to have this behind me, have my family get back to normal, return to work (which I am sure I will feel like I was never gone !) and feel better. The day will come, but until then, one day at a time.
-Nicole

August 25, 2009
Home from the hospital again, after a six-day stay at Abbott, which I was unexpectedly admitted last Tuesday night for peritonitis. I am so happy to be home again with my family. I so did not want to spend time in the hospital again with the transplant process starting next Wednesday, September 2. I have not seen my calendar yet, but I am thinking (if the work up is the same) I should be admitted for my chemo on Friday, September 11 and remain in the cities until approximately November 1. I remain cautiously anxious to get things underway!
-Nicole

August 14, 2009
I had my appointment with Dr.McGlave at the U on Wednesday, August 12. My platelets have bounced back relatively quickly…up to 138,000, giving me the clearance to move forward with the transplant. I am still waiting for the scheduler to give me a call to let me know when my work up appointments will begin. My nurse coordinator told me she thought they could get me in within the next two weeks. I am cautiously anxious to get started.
-Nicole

July 15, 2009
I met with Dr. McGlave today again to go over the findings of the blood tests and the ultrasound on my spleen as to why my platelets are low. All blood tests looked normal…no weird antibodies attaching my platelets and my spleen was also normal. That leads Dr. McGlave to the conclusion that my platelets are low due to the lasting effects of the Revlimid. He stated the Revlimid did such a good job to get the Myeloma under control, but also took out my platelets and said it will just take time for them to recover. So, I will just have weekly labs pulled in Hutchinson, that will be sent to Carol, my nurse coordinator at the university, and I will go in for monthly check ups with Dr. McGlave. When my blood is right, will be when I move on…until then I will wait patiently. I am anxious to get started and the right time will come one day.
-Nicole

July 8, 2009
My work up days are complete and I met with Dr. McGlave today. Everything went extremely well. Good news is that all my multiple myeloma is gone…no traces in my blood, bone marrow or urine, perfect for the transplant…but the bad news is that my platelets are low, too low to move forward right now. I will be going back to the university tomorrow for some more testing to find out why my platelets are dropping. As soon as they find out why, they will treat me, hopefully get my platelets to recover and then move forward. Dr. McGlave does not think my cancer will start growing back immediately, so he did not suggest Revlimid again. But he stated if this goes on for more than a month, treatment will resume. They have one chance to do this…and they want to do it the right way. I am good with that! I will enjoy the extra time giving to me at home!

July 3, 2009
The first two work up days are behind me. My head is still spinning with all the information given to me, but I am understanding much more than I ever did back in February. Wednesday, I met my renal specialist that will be following me while I am at the U, Dr. Palmer. She is excellent, and I am looking forward to working with her. At this time, she does not see a problem with running on PD during the transplant process. I am happy about that, because I feel so much better on PD as opposed to hemodialysis. We also talked about the future with my kidneys, the possibilities of my kidneys recovering after the cancer is in remission and if that does not happen, testing my family members for a match and going through with a transplant. I also completed all my xrays, skeletal survey and an ekg.

Thursday, I completed a muga scan (heart scan) and the dreading bone marrow biopsy. It was the first time I had the bone marrow biopsy without sedation, and the last too…way too painful of a procedure and I will demand to be knocked out next time.
Next week Monday and Tuesday I have to meet with my nurse coordinator, social worker, have a line consult (a catheter in my chest to administer the chemo), and an apheresis consult. Wednesday, I will see Dr. McGlave for a physical and to go over all the test results. By Wednesday afternoon, I am told the transplant process will be underway. I plan to stay in Hutchinson until Wednesday…The commute is not pleasant each day, but it give me more time to be home with my children!
I am looking forward to a nice, quiet, peaceful weekend. I plan on enjoying every moment, because it is my last one at home for a while!
Take care,
-Nicole

June 29, 2009
What an amazing benefit!!! I so enjoyed seeing and talking with everyone…the time went by so fast, I wish I could have interacted with everyone!
There are not enough words to express the gratitude and appreciation I have for all that has been done for me…the donations, the encouragement, thoughts and prayers. It is the most amazing feeling to have such great support from my family, friends, and community. Thank you from the bottom of my heart!
-Nicole

June 25, 2009
I have my first appointment at the University today, June 25…this starts the whole work-up process. At this time, everything is still scheduled that I will be admitted July 1 at 11 a.m.
-Nicole