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 +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.

Good News after First Cycle of Chemotherapy

THURSDAY, AUGUST 21, 2008 08:38 PM, CDT
So this is nice. I'm sitting in my hospital room for the night waiting to start treatment and I've got an internet hookup. I've known there was a possibility to access the internet in the rooms at NIH, but this is the first time one of my beds was equipped with the keyboard and mouse. The space bar on this keyboard is extremely sticky, which is an annoyance. If you read any compound words that shouldn't be, you will know why.
As far as all day hospital visits go, today wasn't bad. I had a Pet Scan to start the day, and it was a lot more comfortable than the one I had a month ago. My plan to stay up half the night last night paid off this morning. I slept very easily during the scan. Even better news than my comfort during the scan was its result. I was informed by my lead doctor while I waited for my appointment that the Pet Scan had very positive results. Later during the consultation he stated the Pet showed an 80 to 90% improvement. That was great news. Since the treatment has gone so well after this first treatment, I will continue to receive the EPOCH and Campath.
Following my appointment I went to get my PICC line placed. That was uncomfortable as usual, but its over with now. While I was getting that procedure, my parents talked with the doctor from the transplant team. He gave them some good information about what the process will be like. We discussed things over dinner, and my parents said the doctor will see me tommorow and give me further information. My father the doctor was impressed with the transplant doctor, and I feel like I will be comfortable getting the transplant here at NIH. It will be great to get that treatment here in Maryland, because I will be close to family and friends. The free services at NIH(THANKYOU FELLOW TAX PAYERS) will also be a great benefit in addition to the high level of medical care I will get here. Unfortunately it looks like I will be spending up to a year out of work following the transplant, so there will be a lot of issues to deal with financially. Luckily for Kate, Isaiah, and I we have a family full of people that are completely supportive. I imagine how hard it is to live through this process for those without the financial and spiritual resources our family and friends have, and I know that we are blessed.
So the vibe tonight is of happiness. The treatment is working so far, but there is still a long way to go before permanent good health is achieved. I should start this second round of chemotherapy around 11 tonight, and hopefully all will go well.

Disappointg news and a change of plans

FRIDAY, AUGUST 01, 2008 10:48 PM, CDT
Finally back at home after a very long day and a half. My day started on Thursday with a Pet Scan before my meeting with my treatment team. It was a pain in the ass, having to remain motionless with my arms above my head for 40 minutes. However, it was done with and I just had time to kill for a few hours. It wasn't so bad wasting time at the hospital. It was still early in the day and I was feeling well.
At 1:30 my Dad and Kate met up with me for my appointment. Things started off well, but again the team took a bit longer than expected to come back in. Kate began to feel nervous again about their news.
When they came back in, her thoughts were correct. The results of the Pet Scan showed signs of cancer on a right rib and at the bottom of my left lung. This was a change from what the doctors were expecting and what I went through the first time around with treatment. It was explained that my treatment plan needed to change now that the cancer was not isolated to the mediastinum. If the cancer was isolated to one spot, it would be easy to treat with radiation to eliminate it. Their is no connection between the lymphatic system and the bones, so it was explained that the cancer had to have spread through the blood. Even if the chemotherapy gets rid of the cancer activity in the rib and lung areas, it is presumed that ther could be small traces of cancer cells anywhere in the body at this point. Therefore the radiation process will be of no use, and the secondary intervention after the chemotherapy will be a bone marrow transplant.
This is the first time that a bone marrow transplant has been brougt up, so its not something I know a lot about yet. There are two general types of transplants that are used...autologus and allogeneic. My lead physician met with us and explained that while my current tumor looks like Hodgkins disease, he would not treat it like that. A HD relapse would usually be treated with an autologus transplant, which uses my own stem cells. His belief after watching how my tumor has attacked my body is that this treatment would not work.
So an allogeneic transplant, of which there are two options, is being pursued. I had my blood drawn last night to be used to find a match. With these type of bone marrow transplants, there is about a 25 percent chance that a sibling would be a match. 1 in 4 ain't bad...however, I have 4 siblings who because of adoption will not be matches. My dad helped me get papers in today to the courts to contact my birth mother. From the history I know about, it seems unlikely that my birth-parents would have had another child together. My doctor was not optimistic that a half sibling would have any better a chance of matching than anybody else in the general bone marrow donor pool. My brother Mike, people at my dad's workplace, and Kate's dad have already asked about getting tested to be a donor. Its unlikely that anybody who signs up now would a match for me, but I'll probably be relying on somebody who signed up for another person. So I'd encourage anybody who feels the desire to help anybody with this type of condition to become a potential bone marrow donor.
What I was told is that although the transplant takes just a few hours like a simple blood transfusion, the hospital stay will likely last from two weeks to forty days. Thats a hell of a lot of time to spend away from home. I spent 3 nights in the hospital back in January, and I felt like I was losing my mind then. So I can't imagine being away from home and Isaiah that long. However, its what I'll have to do. Kate and I will manage, however, I know it will be hard on her to not have me around.
The good news from yesterday is that I was able to get started on chemo. The change of plans from radiation to bone marrow transplant means an increase from two rounds of chemo to probably four. It is supposed to take three months for the transplant to fall in line, so the doctors want me to remain in treatment up until that point. Hopefully the EPOCH-C treatment will do in this tumor like the EPOCH-R did the first one. I took the Campath last night and had chills and a fever. My temperature went over 102 at one point, but came down fairly quickly over the next few hours. I didn't sleep for a few hours despite being exhausted. However, knowing how the chemo makes me feel I have no worries about sleeping a lot over the next few days. The doctors felt that my response to the Campath was pretty normal. Some people get a really bad rash as well with the infusion, but I seem to have avoided that. I was also told by my research nurse that the side effects don't always come back with the other rounds of Campath infusion. So if last night was as bad as it gets with this treatment, then I'll be much pleased.
After the Campath I got hooked up to the EPOCH. The EPOCH treatment is outpatient, which allows me to be at home with a daily bag refill every 24 hours for the next four days. It felt great to be home and see Isaiah tonight and to have dinner with Kate and my parents on the deck. It beats sitting in a small, uncomfortable hospital bed and eating the same food over and over again. So I'm back to taking one day at a time. The long term plan has changed, but I still have to take one day at a time and get through this with a great attitude. Thanks for all of the support from everybody who has read and commented. All of the prayers and well wishes definitely help the family and I out.