Day +70

It was a quick trip to NIH today. The doctors felt I looked well, and I didn't have any negative news to report. My neutrophil count was at 4.7, so it is still nice and high. I'll continue to give myself neupogen shots twice a week to maintain it. There wasn't any other issues with my blood work today, so I was able to get out of their quickly.

My tacrolimus and sirolimus levels were a little high from Monday after they began tapering them off. Those results take all day to get, so I don't know what they were for today. Its possible the doctors might want to reduce the amount I'm giving myself even more, but I'll have to wait to hear about that.

My research nurse shared that towards the end of March I'll have another Pet Scan, bone marrow biopsy, and some heart and lung tests. That will be around day +100, and at that point I'll be able to decrease the frequency of my hospital visits if I continue to do well.
Day in and day out I am feeling pretty good. I still have a small cough in the morning, but do pretty well after I've cleared out the congestion. The cold weather irritates my lungs, so I haven't been outside much this week. Hopefully with March around the corner, the temperatures will begin to increase. Since my hospitilization I've noticed my energy hasn't been great, but I think that is to be expected. That hopefully shouldn't be an issue if I can stay healthy in the near future.

Some good news is that Isaiah got a good repot from his pediatrician yesterday. His lungs sounded clear to her, and she didn't see any issues of concern. So maybe last Sunday night was a quick virus that Isaiah is already over. It definitely feels good to be feeling well, and to see him feeling better also.

Day +67

Today's appointment was pretty boring, but that doesn't mean we didn't have an exciting time at the hospital in the last 24 hours. Isaiah has had a cough the last few days, and yesterday he woke up from his sleep with a barking cough that made it difficult for him to breath. He was pretty upset, and didn't calm down when we steamed up the bathroom. So Kate and I took him over to the emergency room, and stayed 5 hours until the early morning. He was given some steroids to help open his airway, and he has felt fine all day today.

Its tough for Kate. If she isn't dealing with me and my sickness, she still has a 3 year old and all that comes with that. Luckily for us my parents were in town overnight, and my mom was able to drive me over to NIH today. My bloodwork came back looking good, and the doctors shared that the results from my last CT scan on Thursday showed my sinusitis and pneumonia had improved. I still find myself coughing now and then, but overall I'm feeling good.

Day +63

I left the hospital Wednesday as planned, and less than 24 hours later I was back at NIH for my regular Thursday appointment. The doctors had been tracking me daily while I was inpatient, so there wasn't much new information to be given or received. My blood counts are fine, and I'm feeling alright. I still find myself coughing here and there, but its not that bad. I had a CT scan while I was at NIH in order for the doctor's to track the progression of my sinus infection and pneumonia. I'm not sure what the scan told the doctors, but I feel pretty good. I've got a prescription to help me get through the night without coughing, which I'm sure is a blessing for Kate.

One change that was made in my treatment at today's visit was the level of tacrolimus and sirolimus that I'll be taking. Around day +60 the protocol I am on requires the doctors to begin tapering off those immune-suppressant drugs. So the level of those two drugs is reduced by a third. The significance of this is that the reduction of immune-suppressants should allow the new cells from my donor to fight my remaining cancer cells more efficiently. It also gives my body a greater capability to fight off infections, which after two hospital stays in the last month, I'm very happy to have. The other side of lowering the levels of tacrolimus and sirolimus is the increased potential of having Graft Versus Host Disease symptoms. The doctors haven't identified any GVHD with me yet, and hopefully I won't have to deal with any of that now. Who knows what will happen though.

The good news that I'm taking from the last week is that the transplant team appears really optimistic about how I am doing post-transplant. They don't know what caused my two recent infections, but they feel confident that by managing my neutrophil count through several neupogen shots a week, that I can better handle any infections in the future. Hopefully in the upcoming days and weeks I can continue to progress positively and get over this pneumonia that is currently still nagging at me.

Day +61

Things are going well, although I'm still in the hospital with tomorrow as the planned discharge date. My neutrophil count finally bumped up yesterday, and they started me on oral antibiotics to continue fighting the pneumonia when I head home. I've been feeling really well the last few days, although I have a frequent cough. I know its good for me to be coughing right now to loosen things up in my chest, but its a pain to go through more than a box of tissues a day. Its bearable during the day, but only really gets annoying when its time to sleep. When I come back to the hospital for my outpatient visit on Thursday, I'll have another CT scan for them to check the progress of the pneumonia. Other than that the doctors have been very positive about how I am progressing.

Days +56 to +59

Alright. Thursday was a big day because of the PET Scan, but theres been a lot of other stuff going on too. Time to get my thoughts together and put it out there.

Wednesday I started feeling a little scratch in my throat in the afternoon. It was really just a small irritation, but it caused me to wake up coughing once in the middle of the night.
So I reported that to the Dr I saw in clinic Thursday morning. She ordered blood cultures and a few other tests to see if they could identify what the cause was. Other than the scratchy throat though I was feeling pretty good. So I went in for my PET Scan and then went to the day hospital to get a magnesium infusion and a neupogen shot. My nueutrophil count dropped from 900 on Monday to 260 on Thursday. I wasn't surprised by that drop considering the sore throat.
The doctor came in to the day hospital in the afternoon to share the preliminary results of the PET Scan. Her first words about it were, "Its not bad news." Thats not exactly the words I was looking for, but I'll take it. The good news was that there wasn't any increase in intensity at the tumor sites. However, she and the radiologist who looked over the scan were baffled that one of the areas where tumor was present before seemd to have changed shape. There was also activity in the gut, where there hadn't been any before. Gut doesn't really sound like a medical term, but the doctors seem happy to use it. The spot of intensity in the gut was possibly symbolic of a graft versus host symptom.

So the disease hasn't progressed and thats great, but there were some issues that were unexplained. She wanted to schedule a CT scan in order to get a different look at the areas that showed intensity on the Pet Scan. The plan when I left the hospital on Thursday afternoon was to try and fit me in for a scan next Tuesday.

So here is when things got fun! I'm feeling kind of beat down at this point in the day, but I'm attributing it to waking up early, not being able to eat all day because of the PET Scan, and having a long day at the hospital. All I want to do is get home and sleep. So my parents who were at the hospital with me drive me home and I jump into bed and start to rest. My parents were planning on taking Isaiah for a couple of nights, while Kate and I got ready for Isaiah's birthday party on Saturday. Well...I was probably only home for about 45 minutes when my mom comes up to see me, and like a good mom with a sick child she feels my forehead. I feel like I'm burning up to her, so I take my temperature. 102.3 The threshold at which NIH wants to see you back in the hospital is 101.6, so I know I'll be heading back over to Bethesda. So I've been home for less than an hour and am already making plans to head back, knowing that I'll likely be staying inpatient for several days.

So my parents take Isaiah as planned, and Kate drives me over to NIH. This is exactly what Kate doesn't want. She has been such a great support through all of the cancer hassles over the last 18 months, but this was just not the weekend for me to get sick. Having me home and feeling good for Isaiah's birthday was something she was extremely excited for, and it was a big let down to know I would be in the hospital.

So Kate stayed with me for a few hours on Thursday evening. They got me started on IV antibiotics right away and ordered up some more blood tests. My fever stayed high until midnight, when I was given Tylenol and my fever finally subsided. My fever has yet to come back up since then, so thats a good deal.

So I find myself in the hospital Friday on Isaiah's actual birthday. Thats not a big deal since Isaiah was going to spend that day with my parents anyways. I'm sure Kate would have liked some of my help straightening up around the house, but then again she probably got a lot done without my lazy butt in the way. While everybody else was busy with life on the outside, I was able to have the CT scan that my doctor had wanted next week. That went quickly and easily, and then it was time for a consult with the Ear, Nose, and Throat team. They were looking at my sinuses, since I had woken up with some sinus issues that morning. So they did some procedure were a tube with a camera on the end is stuck up my nose so the doctor can see inside the sinus. It wasn't painful, but it certainly wasn't comfortable either. Thankfully my nose was clean, and the Doc didn't see any signs of fungal or bacterial infection in my sinuses. However, he did share that the results of the CT showed some inflamation.

So that was Friday. I was feeling better than before, but was still dealing with the sinus issue, the sore throat, and a cough when I tried to sleep. On Saturday morning my parents came over to see me and had a big smile on their faces. They got some good news from the Dr who was about to come in and see me. So the doctor explained that the CT scan showed no growth in size of the tumor cells. He explained that while chemotherapy will show immediate reduction in size of cancer cells, the immune response with a bone marrow transplant takes a lot longer for the positive results to be seen. However, he was extremely positive that there was no growth. He went on to explain that after the immune suppressant drugs I am on are tapered off, there would likely be a boost in the graft versus tumor effect. The change in shape in the chest from the PET scan was able to be explained as a small case of pneumonia by the CT scan. He also explained that there was no worry about the area of intensity in the gut that was seen on the PET scan.

So...my goal for the day was to surprise Katie by showing up at Isaiah's party. I asked the doctors if I could have a day pass for the afternoon, and they felt it would be fine. So after receiving my IV antibiotic at about 1:00, my parents and I headed over to our house. Isaiah was there at the door to greet me with a valentine he made with his mom that week. After stepping into the door, Kate came out of the dining room and was completely shocked that I had left the hospital and made it to Isaiah's party. Kate had convinced herself that I wouldn't be there to celebrate Isaiah's birthday party, so it was great to show up at home to surprise her. That was probably the best Valentines Day gift I've ever been able to give, and it didn't cost me a thing. Of course it would have been pretty impossible to try and plan that type of gift out.

So after a fun day watching Isaiah interact with his family, open presents, and chow down on his Thomas the Tank Engine cake, I headed back to NIH. I was feeling pretty good but was tired by that point. Unfortunately I found myself still coughing last night as I tried to sleep.

This morning the doctors came by and let me know that all of the tests they ran have come back, and none were positive. So I don't have the flu or any other viruses. It feels strange to hear the doctors excited that I only have pneumonia. My neutrophil counts are still low, .070, so I am still waiting for those to come up. The doctor yesterday said that they wanted me above .500 before they would let me go. The doctors today also expressed that they want to put me on an oral antibiotic when I leave the hospital, so that they can continue to fight what might be causing my infection. So things are looking pretty good overall. The long term prognosis is still good, and the short term problem seems to be under control. I was able to spend a great Valentines Day afternoon celebrating Isaiah's birthday, so being sick didn't hold me back from that. It looks like I'll still be in the hospital for a couple of days, but thats not too long in the big scheme of this process.

Day +53

This was an excellent weekend that just ended. We finally had back to back days of comfortable temperatures and clear skies, and we definitely took advantage of that. Yesterday my parents visited and brought a gift for Isaiah, who turns 3 this week. Isaiah opened up a big box, and inside was a new bike with training wheels. Isaiah was excited to get on his bike, and was a little disappointed that he wasn't able to ride as far as my parents and I were. This was my first time on the bike in a long time, and it felt good. I got in a few miles, and worked hard enough to create a little burn in my legs. I was a little stiff this morning from moving muscles I haven't used in months, but it felt great to be able to get out outside and exercise normally.

So if I were to judge my health by how my weekend went, I'd say I am doing very well. My energy level is good and I haven't had any issues since I was discharged from my recent inpatient stay last week. Kate drove me over to the hospital this morning, and most things checked out alright. My lab reports were good, except my white counts and neutrophils seem to have dropped a little more than they expected. My neutrophil count was abnormally high because of the neupogen shots I had while I was inpatient. Without those injections, the counts will drop until they find a level that is stable. The doctor today said he anticipated they would drop to 1500 to 2000. When the results came back they were at 900. So the neutrophils are lower than they expected, which was the issue several weeks ago before I had the fever and go inpatient. However, they are not so low that there will be any change in my treatment right now. When I visit the clinic on Thursday, they may put me back on the neupogen again if the counts continue to fall.

Thursday is another big day for my family, since I'll be having a PET Scan that morning. The results of the PET Scan 1 month after the transplant were very good. Hopefully the new immune system has continued to fight the cancer in my body, and this scan will show even better results. Since I am progressing so well, I have a feeling that this scan will show us some more great things. So any prayers for a positive PET Scan result and further healing would be very much appreciated.

Day +46

Well its been an interesting week. With the last note I wrote, I was feeling great but my neutrophil counts were extremely low. After being neutropenic for several days, I eventually got a fever Wednesday evening. My temperature had been rising and falling all that day, but rose to 101.8 just before 7:00. The hospital wants you to call if a fever goes above 101.6. Since my temperature was elevated and I was neutropenic, I was told to come in and be admitted to the inpatient wing I have previously been on.

That night they gave me antibiotics and took blood cultures to see if they could find the source of the infection. The cultures were inconclusive and the doctors never truly figured out what caused my fever. Most doctors seemed to blame the Bactrim, although I received one dissenting opinion from a doctor whose judgment I trust. He pointed out that my platelets held steady and it was just my neutrophils that dropped. Usually when Bactrim is the cause of a loss in neutrophils, the platelets are also effected. This occurs because the neutrophils and platelets grow in the same area of the bone marrow. This doctor thought it was likely a delayed reaction to the Rituxan I took with the EPOCH-CR back in the fall. Rituxan can cause delayed neutropenia several months after it is taken. I remember my chemotherapy doctors mentioning this a year ago when I finished EPOCH-R the first time. This explanation seems to make sense to me, although I guess it can't be proven as the cause either. Overall, I'm not concerned with the cause, but am just happy to be feeling better now.

I did have a large cold sore on the inside of my lip that swoll up pretty good. It was extremely uncomfortable for a couple of days, but has subsided for a few days. The doctors said the cold sore could have been a result of the neutropenia, or it could have helped cause the infection that led to the fever. Its hard for them to pinpoint what caused me to get a fever, but the good news is that it went away quickly after starting antibiotics.

So by Thursday morning my temperature was normal but I didn't get discharged until Sunday. I was receiving neupogen shots to stimulate neutrophil growth, but my counts didn't start to rise until Friday. By Sunday morning the number was high enough that the doctors felt good to take me off of the antibiotics. Their plan was to keep me another 24 hours for observation, but I wasn't ready to spend another day in the hospital when I hadn't had a temperature in days. I pointed out that I would be back to the hospital for an outpatient visit today, and they agreed to discharge me on Sunday rather than Monday.

So I was able to get home and watch the Super Bowl at Kate's cousin's apartment. That was a lot more enjoyable watching the game with others than sitting on my hospital bed by myself.
The outpatient visit today was pretty routine. My blood results were good, and I didn't need any infusions. It feels like I'm back to where I was before my neutrophil counts dropped more than a week ago. My energy is good and everything else at home is going well.