the next steps...

In life, some memories are move vivid than others.  One very vivid memory I have is when I was 16 and I heard that a classmate of mine had to donate her bone marrow to her sibling because she had leukemia.  It was the first time I had ever heard of a bone marrow transplant, and it was also the first time I had seen someone show such an incredible act of kindness like that. It was her sister, and she'd do anything to save her.  Things have changed since then to where the process of bone marrow harvest is easier, and less traumatic, but back then, they had to go right into the pelvic bone 75 times with a large needle to get enough marrow (bone marrow biopsy times a million).

I remember being scared about this and thinking of all the hard things people encounter in life.  I remember thinking how lucky it was that I didn't have leukemia.  And even though I wasn't very close with either of them, it still sat with me...the heaviness of the whole situation.  But, the sister ended up surviving and it was a good thing.

So now here I am 18 years later facing my own bone marrow transplant.  Fortunately I don't have to have a donor, I can donate my own stem cells.  It is called an autologous stem cell transplant instead of an allogeneic transplant and comes with much much fewer complications. 

Some people have asked me why I need to do this transplant when I am in complete remission according to PET scan.  I am sorry I didn't explain this earlier, but to clear up the confusion...here's how we got to where we are today.

I have met with the bone marrow transplant specialist doctor twice now.  He seems pretty confident that more ABVD wouldn't have helped the situation because I was in complete remission, continued 2 more ABVD therapies after that and the cancer still grew back so quickly (4 months). That seems to be the key.  There are lingering cells in my body that are resistant to that chemotherapy.  He did order the lab to check my original biopsy and they did find  I was in the highest risk group according to a certain cell marker, highest risk meaning most likely to relapse.

Other areas for concern were that the tumors grew back so quickly after my biopsy this August when the surgeon thought he got the whole tumor out.  And I was doing heavy duty alternative treatments.

So we opted for the mainstream method for treating relapsed Hodgkins Lymphoma--ICE therapy to put me back into complete remission via PET and then high-dose chemotherapy and stem cell transplant.  It was IMPERATIVE that I went into complete remission via PET before moving on. If I hadn't, my chances of the second phase working were slim.  It puts me into the category of refractory Hodgkins lymphoma, and the high-dose might not work either (might be resistant).  It also means that the high-dose would have had to work on bulky tumors, not just stray cells.  You just do the high-dose once (over 5 days).

Basically, the high-dose chemotherapy is killing my bone marrow which might be a source of the tumor cells.  It is also coursing through my veins and working hard on scouring the entire body.  My stem cells are harvested before the high-dose chemo, then frozen, and then put back in me two days after the high-dose.  The day my stem cells go back in is called my "rebirthday".  From then on out I work each day to regain my strength, my immune system, my health, and celebrate my new cancer-free life! 

During the anticipation phase of this process I thought I'd have to be quarantined for 30 days after the stem cell transplant.  Well, turns out that the process is much more complicated.  The stem cell collection, called mobilization, starts this Wednesday.  I have to get a new port put in that is external, so I have to deal with tubes sticking out of my chest for two months!  Thursday I get another round of regular chemotherapy and then I have to take a lot of bone growth stimulators for 10 days to help kick the stem cells out of my bone marrow into my blood stream.  Once my counts are high enough then they harvest the cells through my new port.  It could take up to three 7 hour days!  Once the stem cells are collected, I start the 5 days of high-dose chemotherapy and then two days later have my rebirthday (if all goes well, March 4th).  I have to go in every day after that for 6-7 hours for blood products, fluids, etc. Several of the people I met with on my education day say that the worst part of it all is the two weeks after transplant.  The pharmacist also said to me that just be prepared to be admitted to the hospital for some reason or another...usually everyone does.  Wouldn't it be nice to prove him wrong! 

So this is at least a two month process, and instead of being quarantined after the transplant, it starts THIS WEDNESDAY and lasts until after the transplant.  It means that I can't drive myself anywhere, I can't be left alone, I can't go into public places, not even the grocery store.  It is to the doctor's office (almost everyday) and then back home where I must be babysat.  One month after transplant I will probably be released from going to the doctor all the time and be babysat, and I think I can start to drive but I can't go in public places for 3 months! I can't garden this spring either.  Needless to say, I was not to happy to learn this.  But they were pretty strict about these rules and said my caregivers (Michael and my mom) are responsible for enforcing these rules because it means my life. 

The good news is that they said I could have visitors to the house as long as they weren't children under 10, they aren't sick, or around anyone sick, and it is a small number at a time. So yay! 

It has been a long road to get here.  I am happy to begin to see the light at the end of the tunnel.  I am ready to get this started as I want to get it over with even faster.  I have fears around this, I am scared, but I have love and support and I am strong, both physically, mentally and spiritually.  So when those fears rise up, I feel them and then release them until they come again. 

So here we go!