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.