Let the Games Begin!

It has begun. I drove to St. Louis Wednesday for my pre-transplant appointment and everything went smoothly. It was good to have a few more of my questions answered. As I said before there is a 50-60% of cure after a transplant in my situation. If I am going to relapse it will most likely be within the first year or two. The doc said if I make it past the 2 year mark there is about a 95% chance that I will never relapse. That was very reassuring. Now I just need to make sure I make it to the 2 year mark with no relapse! It also sounds like this whole transplant deal is going to be even more fun than I thought. My taste will probably be gone/messed up for at least a month, maybe longer. Patients typically lose up to 10% of their body weight from diarrhea, lack of appetite, and nausea/vomiting.(I plan on taking a before and after picture.) Sounds like I will lose ALL of my hair again and it will probably be gone for about 3 months. I don't mind losing my hair except my eyebrows and eyelashes, people without eyebrows and eyelashes just look freaky!

Friday I started my growth-colony stimulating factor (Neupogen) shots and had my central line (Hickman tri-fusion catheter) put in. I am staying with my brother Brian and his family here in St. Louis. I drive over to Wash U every morning and get a shot in my belly or arm and then I go back and hang out with them. I have not had many symptoms from the shots other than some bone pain in my hips/lower back.

Brooke and the kids stayed at home (to get the house ready to put back on the market) and it has already been really hard being away from them the last couple of days. This next month is going to be rough! Though all of this has been a terrible experience I know that it will end up making me a better, stronger, more compassionate person. I hope that will equate to being a better husband, father, and doctor. One thing that has been nice about all of this is the time I have been able to spend at home with my wife and kids. Although I feel terrible and am not able to do much when I'm going through chemo it has still been great to be there when my kids wake up in the morning and when they go to bed at night. Had I started residency at the end of June I would not have had this time to spend watching my little ones grow up so fast. I feel lucky that I've had this time when they are so little and so fun to spend getting closer to them. They are everything to me.

After one of my rounds of chemo in late June I was laying on the couch feeling terrible. I did not want to move. I did not even want to talk. My sweet little Pearl grabbed a book, toddled over to where I was, and then gave me the book and signed "book". She looked at me with her deep blue eyes, smiled and said "Da Da", then signed "book" again. My pain, my discomfort, my fatigue was swept away. When I first saw her grab the book I thought "nope, not right now", but there was no way I could say no to her. I scooped her up, layed her on my chest, and proceeded to read her the book. I could have lived forever in that moment. It is very hard for me to convey the emotions I felt or the beauty of that simple smile and the feeling of my little girl lying on my chest. Experiences like these are precious gems that shine through so much darkness and are most definitely tender mercies from God. It just makes me realize the importance of living in the moment and not always waiting to be done with this stage of life or treatment or whatever it may be. It is so easy to get caught up in looking forward to what is to come that we don't see and enjoy the wonderful things that are happening in our lives right now. I hope to be better able to be present and more observant of the beautiful things and people present in my life each day. These are moments and realizations that I may have never experienced had my cancer not relapsed. Dark clouds always have a silver lining.

What's to Come

So, now that my cancer is back in remission it's time for the bone marrow transplant. I have two more weeks to recuperate and then the process will begin. I cannot say that I am looking forward to it, however I am looking forward to being done with it. The technology and advances that we have today in medicine really are amazing and I'm so thankful I live now and not even 15-20 yrs ago. My transplant will be done at Barnes Jewish (Wash U, Siteman Cancer Center) in St. Louis. So, on to the process.

I am receiving an autologous bone marrow transplant, or stem cell transplant. This means that I will be receiving my own cells, not those from a donor. On the 29th I'll start getting shots of growth-colony stimulating factor, or G-CSF, which will cause my bone marrow to produce stem cells. I'll receive injections for 4-5 days straight and then on the fifth day they will start harvesting the stem cells that will have spilled over into my blood. They will harvest the cells by taking my blood out, spinning out the stem cells, and then replacing my blood. This will be done everyday for 1-4 days until they have enough stem cells. Then on the 8th of August I will be admitted to the hospital and start a very high dose chemotherapy (BEAM regimen) to essentially kill off any remaining cancer cells and my bone marrow for 7 days. This will completely wipe out my immune system making my body unable to fight any infection so I will be on high dose antibiotics as well. Since this also wipes out the body's ability to make blood/platelets there is a good chance I will need blood transfusions during this time. Once the week of chemo is over they will do the stem cell rescue (picture my stem cells in little super-hero uniforms w/capes) and then it is just a matter of waiting for the stem cells to reform my immune system and blood counts. This will take anywhere from 7-21 days. Once my blood counts have come back to normal I will be able to come home (barring any other complications).

So it looks like I will be in the hospital for most of August and it sounds like I'll pretty much be a limp noodle for most of that. Awesome, can't wait! It's going to be hard being away from Brooke and the kids for that long, but at least they will be close enough (1 1/2 hrs) to come visit often. My brother Brian and his family also live in St. Louis so I'm sure I'll see them and they are kind enough to let us crash there any time. I feel bad for Brooke having to deal with the kids and run everything all by herself the whole time I'm gone. 

The doctor said she thought I would be feeling well enough to work full time by the beginning of October, so hopefully that really is the case and I recover quickly. It will be interesting to see what side effects this chemo will have in store for me, as this will be the third different regimen I will have gone through.

Catch Up-Part 2

I had a regular 3 month follow-up  PET/CT scan scheduled after the weekend we got back anyway, so I just kept that appt.  It showed what I thought, a large swollen superficial lymph node and two smaller ones deeper and further up the chain. Luckily there were no signs of disease anywhere else and we had caught it very early. A biopsy still had to be performed and was scheduled for a couple days later. That weekend we had a family reunion at my parents' house.  I got the news from a friend in the pathology department since it was a holiday weekend. It was cancer again. I learned that the next step in treatment would be chemotherapy then an autologous bone marrow transplant and there would be no way I could start residency before October. It was good to be surrounded by friends and family when getting all of this news. Even if nothing can be said or done to help, just the presence of loved ones around helps.

When we got home we took the house off the market, I contacted my residency program, and we set up a schedule for treatments. I was lucky again to find out that one of the most effective chemotherapy regimens that is used for relapse of my disease is done outpatient. That was the treatment the doc preferred and definitely the one I did. Being stuck in the hospital for 5 days at a time was like Chinese water torture. I would receive chemo 1 day every 2 weeks until my PET scan was negative and then move on to the transplant. An appt. was made with the transplant specialist at Washington University in St. Louis since the University of Missouri doesn't do bone marrow transplants. It was frustrating not having any sort of time line and having to try and coordinate how things would be done between the two institutions and specialists since everyone has a certain way they like things done and their own opinions, but everything has worked out.

I saw the transplant specialist at the end of June after 2 rounds of chemo. She recommended doing a PET/CT(to make sure I was in remission,)when we got back from our trip to Utah, one more round of chemo (which I was not happy about), and then waiting 3 weeks to let my body and blood counts recover a bit before starting the bone marrow transplant. Even with the bone marrow transplant all the docs I have talked to have said there is only a 50-60% cure rate. Nothing like the flip of a coin! However, when they say cure, they mean cure. As in, it will never come back.

We went to Utah to visit my in-laws over the 4th of July and had a great time seeing tons of family and friends. I had the PET/CT on the 7th of July and it was completely negative. My cancer is in full remission again. I'm glad, but I'm not getting too excited about it considering how quickly it came back last time and looking at what I still have to go through. I did my last round of chemo before the transplant on the 8th and then had all the tests needed to make sure I can do the transplant (PFTs, Echo, EKG, CXR etc.) on the 12th. Now I just wait to feel better before they practically kill me and then bring me back to life. I'll explain the bone marrow transplant in more detail in my next post. For now, I'm just glad I'm finally getting my taste and energy back little by little.

Catch Up-Part 1

I want to write a post to get up to date on what is going on with my situation and treatments now before getting any more in depth on my journey to this point.

My cancer went into full remission after 2 cycles of chemotherapy back in Nov. 2010. I finished out 4 more cycles of inpatient chemo ending mid Feb. Then took a milder form of oral chemo starting in March for about a month.

Things did not seem like they could have gone any smoother. I was able to finish my med school rotations, do 13 residency interviews all across the country, and match at the anesthesiology program I wanted to go to all inbetween chemo sessions every 3 wks. I graduated from med school on May 14, 2011 and we were off to Florida to catch a cruise to the Bahamas the next day. We were going to celebrate being cancer free, done with chemo, and the end of the long medical school road.

Then, irony at it's finest. About half-way through the cruise when drying myself off I noticed a tender spot on my leg/groin. Upon a little further investigation I determined it was a swollen lymph node and knew it most likely signified relapse. I debated whether or not to say anything to my wife because I did not want it to ruin the rest of our vacation or have her worry unnecessarily. I went ahead and told her. She took it better than expected, but it was still quite a blow. I think telling her affected me more than her. Instead of being able to shrug it off until we got home I was forced to confront the possibilities of what it could be and what we could have to go through over the next months to a year with treatment, moving, residency, insurance, money, etc. Needless to say there were at least a couple of hours here and there wasted to worry.

I literally could not believe it. Here I was, 30 years old, not single health problem before this. I've never drank, smoked, done drugs, and I eat well and have stayed in good shape. I have a type of lymphoma that has been described as the one you would choose if you could because of the positive prognosis. It responded immediately to treatment and had shown no signs of being active for almost 6 mos. The cure rate after 6 cycles of the chemo I had is from 70-94%. Being young, healthy, and the quick response rate should have put me up there in the 90% range, or so I would have thought. Nope, not for me. Here it was, back after only a month of being off all treatments, when I was finally starting to feel like a normal person again. I did not know exactly what this meant for my prognosis (I had not checked into treatment/prognosis of relapse. I figured if I needed to know that it would probably be much further down the road.), but I knew it was not good.

Although I knew it was probably not the case, my biggest fear was that this could be the beginning of the end. Lymphomas can become resistant to chemo just as most other cancers and maybe it had never even fully disappeared. The thought that it might not respond the way it did the first time or at all to the chemo scared me. My biggest fear then and now is that my young children could grow up without their Daddy.

I honestly did not know how I was going to do it. Chemotherapy is TERRIBLE! I hated every minute of it. Losing my taste, my hair, my patience, myself. It would be one thing if this was 1,2,3 years down the road, but after only a month. Not to mention that we were supposed to be selling our house, moving to Oklahoma, and starting residency all in that next month. HOW?

I was able to push the thoughts and fears to the back of my mind and still have a good time for the rest of the trip knowing there was nothing worrying could accomplish.