Nicole’s Journal

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