2 Year Post-Transplant

I wanted to update my blog as I just reached another milestone. This April I am now 2 years from my stem cell transplant on 2 April 2009. It has been a rewarding two years. Nanette and I are almost back to normal in our daily activities. We call it the “new normal”. Dr. Matous said we could lift all of our restrictions beginning 1 July 2011. Some of the restrictions still in place are: 1. No drinking the water at home (well water). I still have to drink distilled water and make my own ice cubes. 2. No wood burning stove. 3. No buffets and salads away from home. 4. Stay away from sick people. 5. No dogs and other animals. There are many more but you get the idea.

I am seeing the doctor every two months. Each visit they drain off a pint of my blood and throw it away. No one wants the blood of someone that has had a blood cancer. My iron level is high from multiple transfusions so taking blood from me reduces the iron level slowly. I may have to do this for another year or so. I had a full body PET/CT scan which was negative for cancer. It shows I have gallstones but we keep hearing that and it is the least of my problems. Dr. Matous stopped my tacrolimis about 2 months ago. It was an immunosuppressant that kept my immune system from rejecting the new stem cells that turned into bone marrow cells. So far I have had no adverse effects. I have to watch for mouth sores, skin issues and other nasty things that might signal graft versus host disease. It would mean my body is fighting the bone marrow. So far no problems, so maybe my body is getting used to the different cells and they are getting along nicely.

Dr. Matous is also stopping me from taking acyclovir. It is a drug that keeps me from getting viruses. Nanette and I are on a cruise right now; when we return home I will discontinue the acyclovir. At that time I will be completely off any medications related to the transplant. I will then be taking only vitamins and minerals like a normal person.

Nanette and I have been playing for the last year making up for lost time while I was sick. We have traveled, and I am sitting on a cruise ship in Guymas, Mexico as I write this blog. Nanette is working 2 days a week until summer and then reduces to 1 day a week. I am enjoying retirement and not sure if I want to return to work again. Right now I am in no hurry to rush back to work.

I want to thank everyone for their help and prayers for me through my illness. It has been tough, but I have a great supporting cast and caregiver. Now I am trying to give back since I am getting a second chance. I want to help those that have to go through cancer/chemo since I have been down that road. Take care and thanks for your support and help.

1 Year Post Transplant

I just passed a major milestone post-transplant. It was my one year anniversary. My doctor has scheduled many tests to see how things are going. Last week I had a PET scan. It is like a CAT scan but radioactive sugar is injected into my veins. Since cancer cells reproduce much faster than normal cells the radioactive sugar heads straight to the cancer cells and the PET scans lights up where there is cancer. I used to look like a Christmas tree in my PET scans due to all the lymphoma in my body. Now the PET scans are clear with no signs of cancer. I still get nervous before I have the scans since I had so many bad scans before my bone marrow transplant. I think worrying about the cancer returning is one thing I will have to deal with the rest of my life.
I also had a pulmonary function test to measure my lungs. The doctor wants to see if any damage was done by the chemo and transplant. The test went well with my lungs functioning 100%. I have many more tests scheduled for 6 May and will discuss them later. One thing that is coming in the near future is shots to vaccinate me like a new born baby. My immune system was destroyed by the chemo and transplant so I am getting shots just like my grandchildren for DPT, measles, etc.
My family have been great with supporting me during the last year. Nanette has been my strength and caregiver. She keeps me on the right track when I try to cut corners and bend the rules. We are starting to travel more with a trip to see Michelle's family in Sacramento under our belt. We are now near Olympia, Washington visiting Brooke's family. We have a short 4 night cruise scheduled for 10 May from San Diego to Vancouver BC. The doctor said to start living our lives again but take precautions like wearing a mask on airplanes and washing hands.
Thanks for your prayers and support throughout this last year.
Jeff

Day 49

Almost halfway!! Jeff has had two appointments this week. Tomorrow we see Dr. Matous--Jeff's dr. It will be the first time we have had an appointment with him since seeing him in the hospital. Actually, Monday he stuck his head in the door while we were waiting for the other Dr. and said hi. Not much has changed this week except that Jeff has gone to 30mg of prednisone daily. It has brought his blood sugars down slightly. He is getting used to finger sticks and belly shots, but it still doesn't make him really happy. Food actually now has some taste to it and he is enjoying it. He has gained about 5 pounds back. He is walking betweeen 30 and 40 minutes a day on the flat at the bottom of the road. Whenever the girls are here, they walk with as do the grandkids. They either ride their bikes or go in strollers. He has some "funny" feelings in his feet that he told the dr. about the other day. It is somewhat numb but not tingling. It comes and goes as well. He had the same sensation in the hospital, but thought that it was due to how swollen his feet were with the retention of fluids. The inability to sleep despite a sleep aid is also not being fun for him---but he says that in comparison to the rash and diarrhea, he has nothing to complain about. Good spirits!! We actually went out to eat this week at a place that has the kitchen in view and will cook things exactly as you want them. He, Brooke, Breanna, and I went. Brooke and I ordered while Jeff sat outside and read a book until they brought us our order. He was pretty nervous about it, but all went well. Brooke was here for about 5 days. She took him to the dr. on Monday which gave me a great break. I watched Breanna which was a break for her. She was very helpful the whole time she was here. We also went to sacrament meeting---but sat on the couch to receive the sacrament. He wore his mask and as soon as he had partaken of the water, we got in the car and I took him home. Good times!! There is progress in Snoyland!!!

Day 41

Two appointments this week so far. Only a few changes in medications. Jeff has to continue to prick his finger 4 times a day to know what his blood sugars are. He is taking insulin shots 4 times a day as well. They increased his "sliding scale" of insulin, so he takes greater amounts of insulin each time before he eats. The dietician wants to send him to diabetic counseling and carbohydrate counting which doesn't make him happy at all!!!! He said he will just stop eating if that's what they're going to do. We have mixed messages. Your blood sugars are too high and we're having to give you quite a bit of insulin, and, eat, eat, eat so you don't lose any more weight. They don't jive together at all. Hmmmmmm...IV antibiotics for the blood infection are still being given. The anti-fungal medication that he is taking will not be good enough to cover any fungal infection now that he is on steroids. So, the dr ordered a new antifungal called voriconazole or vfed. It is extremely expensive---$1100 retail for 30 days. So, of course, the insurance company is wigging out and not wanting to have him on it. You would think that when they know he has had a bone marrow transplant and is immunocompromised, they would let him have the medication. So, we have been fighting with the insurance company since Monday. Just found out from our pharmacy that they approved it, but they can't get it in until tomorrow. So, Jeff's first dose will be Friday. If he gets a fungal infection in the next little bit, I will be quite ticked that they wouldn't start it right away. Our friends from the hospital--- they wouldn't let them out until he had the expensive meds in their possession because of the risk the fungal infection is pretty great in this population of patients. Hey, Jeff gained 1 pound in the last two days!! Wahoo!! It is a big deal to not have him losing anymore weight and to actually gain something. Over and out!!

Day 38

These last 7 days have been filled with dr's appointments. Starting last Monday, Jeff had an appointment every work day. Monday Jeff could hardly stand the itching from the rash all over his body. It is called graph vs. host disease. The nurse practitioner came in and asked if we wanted to continue to torture him---she couldn't make the decision to start him on steroids, so a dr. came in, examined him, and made the decision to start on what they termed..low dose prednisone. It is 40mg per day which isn't really that small of a dose in my opinion, but he said that most times they start the patients on 80-100mg daily. Jeff had also been running a temp for days. That morning at the dr. his temp was 100.9 so they drew blood cultures. The steroids started to help him that day. Tuesday started with a call from the dr'.s office that one of the blood cultures had come back positive meaning that he had a blood infection. We had to get into the car and go downtown for him to be dosed with IV antibiotics--vancomycin. It is a big gun. I administer it at my hospital all of the time. Wednesday the nurse practitioner wanted some labs to be done on Thursday which didn't make us too happy. They have to do with his immunosuppressant drug and the antibiotic. No other changes were made on Wednesday. Kind Monica took over care of Jeff Thursday so I could work my one day a month to keep current and employed. He had a PET scan done that day at noon; the purpose of a PET scan is to see how much cancer is in the body. The scan lights up like a Christmas tree wherever there is cancer. Friday was D-day to find out the results of the PET. We had an appointment with a physician that day rather than a nurse practitioner. Prior to his coming in, the dietician came in to talk with us and get us familiar with a one touch glucose scanner. Because Jeff is taking steroids, he has steroid induced diabetes. His pancreas has shut down for the time being until he is finished with the steroids. The dr is planning to keep him on the prednisone for about 8 weeks. So, for the next 8 weeks or so, Jeff gets to take his blood sugars 4 times a day. They get progressively higher as the day goes along, so he needs insulin shots just prior to lunch, dinner, and at bedtime. He isn't thrilled at all about it, but is getting used to it and being a trooper. When Dr. Bearman came in, he told us that the PET scan looked great. He read it to us, reiterated that it was good, and we--especially Jeff, still didn't believe it. I even had to tell him to smile, that this was great news! Right now we are status quo, with his getting iv fluids, iv antibiotics, insulin, and having his wife shove both food and drink at him constantly. Tomorrow is another day and another week. We supposedly only have to go in 3 times this week. Hurray! We are so excited about the results of the PET scan. We are getting into a pretty good routine. Thanks for all your thoughts and prayers. We know they work!!

Day 29

It's Friday and time for a weekly update. I saw a nurse practitioner on Monday and nothing significant happened. She looked at some rashes that I am getting and wanted to watch and wait. I saw her again Wednesday and she did my bone marrow biopsy. They are looking for no disease in the marrow and that my marrow is taking on the characteristics of of the donor. She also decided to do a skin biopsy because of my rashes to see if it is graft versus host disease(GVHD). The procedure went well as they gave me conscious sedation so I didn't feel her digging into my bone marrow. I am just sore for a day or two after the biopsy.

Today we saw Dr Bearman and he had the results of the biopsy's. The bone marrow biopsy showed no evidence of lymphoma in the bone marrow. It also looked like it should concerning the donor marrow engrafting and my marrow taking on the characteristics of the donor. The skin biopsy came back positive that I have a mild touch of GVHD. Nanette and I thought he would treat and try to eliminate the GVHD. He does not want to treat it at this time. The beneficial part of GVHD is called graft versus disease. The donor's bone marrow will also attack any left over lymphoma. He does not want to discourage this from happening. So we walk a fine line watching the rashes and living with them. They do itch so they gave us a prescription for pretty strong ointment to help with my comfort.

Counts are still increasing and looking good. Platelets are 186 with 150-400 the normal range. White blood cells are 5.9 with 3.7-10.0 being the normal range. Absolute neutriphil count ANC is 3.6 with 1.5-7.5 the normal range. Red blood cells are 36.7 with 42-53 the normal range. So everything is in the normal range except for red blood cells.

I am still dealing with my bowel issues. I get diarrhea once a day and can control it with the drugs they have provided. Fatigue is getting slightly better and I am trying to walk 30 minutes each day when weather permits. Now Nanette wants to tell you the real story.

Jeff is still losing weight which we are trying to mitigate with high calories, high protein, and frequent meals. It is because he is trying to heal and also has some GVH, and his skin is his biggest organ. His body is trying to fight alot, so his metabolism is running high. He has no interest in eating, yet he is good at forcing himself to eat and drink. The dietician called today and also suggested using soy milk instead of regular because of Jeff's diarrhea. We are going to be doing more smoothies. He can now have some fruits and vegetables following a great washing effort. We are only introducing one new thing every other day or so to make sure that we can watch and see how his bowels adapt to each new food. I told you, I brought a brand new baby home....All mothers will understand this last part that I wrote.

His spirits are still good. There are periods of frustration but they are pretty infrequent. It has now almost been 2 weeks of cooking 3 meals a day and I haven't died yet and neither has he.

Last but not least, there have only been 3 changes in medications in the last two weeks. His tacrolimus--prograf--immunosuppressant, is 4 pills in the am and 5 pills in the pm. Today he started bactrim which is an anti infective agent that is to help protect his lungs from a common pneumonia that can occur in immunosuppressed patients. It is standard to start it around Day 28. He also got to start a multivitamin today. Wahoo!! Something normal.

Naps happen daily when not at the dr. and travel only happens to and from the dr'.s office. Otherwise, Jeff isn't interested in going for car rides etc. He hasn't gone into a store which really doesn't bother him for 6 weeks or more. He has had to sit in the car and wait for me to go into the store for food items or pharmacy items only.

Kind young men and young women from our ward came and spent about 90 minutes raking our yard, cutting and stacking wood, and digging yuccas this last Wednesday. It was such a blessing to have them here. It helps take some of the burden off of me!!! They gathered about 50-60 black yard bags full of pine needles and cones. The laughter and hard work they gave was phenomenal. That's all folks. Have a great weekend

Day 23

This is Nanette "blobbing". It is nearly the end of another day; Jeff has been slightly less fatigued today. He didn't let you know that he gets IV fluids at home everyday. A home health nurse came to show us how to operate the pump. Because of what has been done, his electrolytes are out of balance. One that is going to stay out of the "normal" range for awhile--2 months or so according to the nurse practitioner--is magnesium. So, our bottom level of the refrigerator is filled with a week's worth of IV fluids. They adjust amounts and volumes according to what his labwork shows when we go into the Dr.'s office. Each morning I hook him up for about 4 hours. Then he is free for the rest of the day. Today he walked outside for about 20 minutes. We would've done more if it hadn't been so cold. Jeff didn't tell you, but one of the things that a caretaker of a bone marrow transplant patient has to do is handle all of the food, cook it, and clean up. He isn't to help at all due to the possibility of bacteria or fungus. Now that doesn't sound like a big deal, but---I haven't cooked three meals a day for about 4 years. He isn't allowed outside food from restaurants yet either. He has to have a bone marrow biopsy monthly for awhile. The dr came in on Tues. and sat by me, but asked him if he wanted conscious sedation---he meant for the bone marrow biopsy. I said yes. He said he wasn't talking to me. I said I know but that I want conscious sedation because I have to cook three meals a day. I thought it was pretty funny, but the dr didn't crack a smile. He isn't our "normal" dr. Oh well. I am just thrilled to have him home! Our home was just a house with furniture in it while he was in the hospital. Now that he is here, it is so enjoyable. I wouldn't want to be anywhere else doing anything else. He is a fighter and a trooper. I don't know how I would behave with all he has had done to him. Love you all!! Thanks for your support. We'll keep blobbing at least 3 times a week.
Oh, two more awesome things--Cory and Adam put on craigs list something about getting a wii for Jeff and this man responded and now we have one for Jeff to play and have something to do besides sleeping and reading. It was so wonderful of them to think of Jeff!! Cory and Adam are great people who we are so happy to be related to. Sue came up to help me make meals to separate into single meals so that Jeff has choices about what to eat. They are already cooked, so just have to be thawed and warmed in the microwave. It took all of one afternoon. Wonderful sister!