This post has been in draft status for almost a month now. Sad, really. I just have no desire to talk about it or write about it, but I know that there are a lot of people out there that would like to know how I am doing, so here goes.
The last few months have been appointment after appointment and test after test since TriWest finally decided to approve an offbase oncologist for me (my on base oncologist is deployed). Most of the results haven’t changed much, but chemo has been mentioned now due to the fact that my symptoms are getting worse and that hit me. Hard. For now, I have refused that route. While my symptoms have been getting worse, I do not yet feel they are “bad” enough to subject my body (and family) to the stresses of chemo. Chemo is not smart, not only does it kill off the bad stuff, but it attacks the good stuff too. So, we just watch and wait. As of right now, I don’t go back to the doctor until September unless something changes.
February 11th brought 3 years of fighting this battle, although I have been recently told it should have been diagnosed probably about 2 years earlier. Military family practice, gotta love it. There are some days, I still don’t believe it, then the utter fatigue and bone pain hit and I am quickly knocked back into reality. I am thankful though that even as frustrating as the “waiting” is, that is it not aggressive at this point and I can still lead a fairly normal life.
In early March, I had new blood work drawn (as well as a CT scan). My WBC (white blood cell) count is up to 56 from 48 back in September. It’s still not doubling in a 6 month time frame, so that is good news. I was Zap-70 positive but CD38 negative which is a bit weird. From what my oncologist says, when you are positive for one you are usually positive for both. He says my results are actually a good thing but I will just have to take his word for that. I try to research and learn about my results, but it just makes my head spin sometimes, so I walk away. My CT scan showed several enlarged lymph nodes in my neck, armpits and groin, but none in my chest. My spleen and liver are also still at their normal sizes which is a good thing (in CLL patients, sometimes your WBC can collect in your spleen causing the need to remove it).
On March 21st, I had a lymph node biopsy to see what is going on with the enlarged lymph nodes (and to see if my leukemia had transformed into a more aggressive lymphoma). I am now the proud (?!) owner of a 2 inch long battle wound/scar. The surgery went well and for the first time in ages, I actually came out of general with no nausea. That is such a blessing, because I cannot express how much it sucks to not only be groggy and in pain, but to also feel the need to throw up (which I don’t do well anyway, I take it as a personal insult and cry every time).
The surgery was outpatient, so I got to go home after a few hours in recovery. The wound site itself is still tender, but otherwise things are great. The numbness is going away and I no longer feel like someone is ripping my head off when I turn to look at something.
On March 31st, I had the follow up with the surgeon and found out the results. They took out 2 lymph nodes and both came back as having SML (small lymhocytic lymphoma). What? That threw me for a loop and really scared me. So had my leukemia turned into a more aggressive form of lymphoma? Thankfully Bryan was with me and he has a knack for being able to keep me from totally freaking out. My next oncology appt wasn’t scheduled until April 11th, but I knew I couldn’t since there and wait almost 2 weeks to know what was going on, so we stopped by the office downstairs to see if I could reschedule for a closer date. Instead, he saw me then, about 15 minutes after I walked in the door. I’d like to see THAT happen in a military hospital.
It turns out that CLL (chronic lymphocytic leukemia) and SML are basically the same thing, only CLL presents itself mainly in the blood whereas SML presents itself mainly in the lymph nodes. So, my diagnosis hasn’t changed I still have CLL, stage 1 to be exact (it goes from 0-4). It was a relief to hear that, as much as anything can be a relief to a patient with active cancer.
So, due to my choice, we wait. Eventually I will need chemo. Supposedly the success rate for CLL patients to go into remission after chemo is pretty high. If I don’t go into remission, it comes back or I develop another form of cancer, we move on to possibly having a bone marrow transplant. Of course, this could be 6 months down the road or this could be 5 years. No one really knows. The average life expectancy for someone with CLL is 12 years, but I am an anomaly. I wasn’t supposed to even get CLL (usually you are male and over 70), so there are truly no statistics for me. On one hand that makes me hopeful that being younger will help me fight it more effectively and on the other hand it scares me to death. What can you do though?! God gave this to me for a reason, I just need to figure out why and act on it.