I’ve been sitting on this post for a week now, I HATE writing these updates.
Last week I had my routine oncology appointment and yes, the diagnosis is still cancer, chronic lymphocytic leukemia to be exact. It probably sounds a little bit like denial, but I always go in hoping that they will say, “OMG, I am so sorry, it isn’t cancer, it is….??”. I know that isn’t going to happen, I trust my current team of doctors immensely, but there is still that irrational hope. I mean, I defied all the odds getting it, isn’t there that 1% chance they are wrong?
My white blood cell counts are staying pretty stable, up to 18 from 15 when I had my last check up 6 months ago. Normal is 4-10, I was diagnosed with counts at 26 and my weight loss has helped my numbers come down in the last year. White blood cells accumulate in fat, so if you are heavier you are typically going to have higher WBC counts in general (only normal ones, not defunct ones like me :). I had been really worried about my counts, because they were at 22 when I was in the ER this summer from my lovely allergy shot allergic reaction. My doctor told me to never pay any attention to my counts when I am sick or have any other trauma because basically they will shoot up solely in reaction to that and not be a good guide. I am not anemic though and my platelets are fine, so that is good news as well. She is concerned that my symptoms are getting worse (fatigue and night sweats, I swear I am going through menopause at 29) but still does not feel ready to “treat” me because the side effects are much worse. She always asks my input though, because she says she is not me and I am a very unique case so they don’t truly have all the answers for me (average age of a CLL patient is 70 and male, there aren’t even enough of “me” out there to have any sort of statistics). I opted to still just wait and see because I am able to function normally most of the time but I go back again in 3 months now instead of 6.She prescribed me Lunesta (which I haven’t taken yet) in hopes of allowing me to sleep through the drenching night sweats. We can’t stop them, but hopefully I can at least get some rest. Otherwise, I am caught in a vicious cycle…extreme fatigue, broken sleep, extreme fatigue, broken sleep.
I did get one piece of bad news, this was my last appointment with her personally. She deploys in January and then is separating from the Air Force when she gets back. I have been truly blessed to have her as my oncologist and I am not sure anyone will ever fill her shoes. While I still don’t understand why God placed this specific battle in my life, he definitely knew what he was doing giving it to me here. Not only is she is wonderful oncologist, but she is a hematology oncologist which is the specialty I need and considering oncologists in the Air Force in general are few and far between, it is nothing short of a miracle.
This news did bring peace of mind about though in a different way. Bryan’s job here is horrible and the way it is affecting our family is worse than I could have ever imagined. We survived the UK, why in the heck would Florida break us?! And, while I absolutely love my job, as tired as I am there are many days that I wish I didn’t *have* to go to work. We had been tossing back and forth the idea of retraining but hated the thought of leaving my medical team, first and foremost, Dr. G. We had been praying about it but didn’t feel like we were getting a strong response one way or the other. After hearing her news, it was almost like God saying, “it’s okay”. So, a few days ago I looked at the budget and although it would take some getting used to, we could live without my salary. Then, last night we sat down and looked at all the job with E-5 slots open and narrowed it down to 5. Bryan submitted the eligibility request this morning and now we wait on a response. They have up to 20 duty days to let him know if he is qualified/eligible for any/all the jobs and then we go from there. Nothing is set in stone, but the process has officially been nudged. If possible, we’d like to arrange it so J and I stay here at least until the beginning of June. I don’t want to make her change schools if we don’t have to and I am heavily involved in Relay this year. That though, is up to the AF powers that be after we see our options and make our wishes known.
In a way, it is scary to think of leaving here and the roots we have set down. This is the longest I have ever lived somewhere since I was 11. I have a great job, we have an awesome church and large support system. On the other hand though, I am getting the immense itch to move and go somewhere that people don’t know my “story”. Somewhere I feel like I “fit in”.
We shall see what the future holds.
A lot now explained Lacey, thank you. I don’t suppose the oncologist is moving anywhere near where Brian could get a posting? It seems so fortunate to find a clinician that suits you so well…
Best of luck to you.
Caroline (Bristol, UK)
What a wonderful post and thank you for sharing all of that. You have some big decisions and issues in front of you for sure. I understand the desire to move, to be new and reinvent yourself, to start fresh. It is a liberating experience. I hope I can meet you before that though!
I so wish that we are able to spend more time togeather and get to know eachother other than in cyberland, You are such an awesome person from what Ive seen from you and I know that this will to be something that is very difficult and that will never leave you.
the other day My mom started having swelling in her legs so the doctor ordered a chest xray on her and they saw a soft tissue mass on her sternum so the ordered a CT scan and that showed the same thing and so now she has to see a pulminary specialist about what to do next to see what this is and it scares the heck out of me because I dont know what I would do without my mom.
I do know that you will get thru this and I will be Praying and Praying for you every day! you can call or text me if you need to talk Im always here 776-0381.
I agree with Amy; I hope we can meet before you go! We have to.
I hope the Lunesta works and that you guys can find a place where you fit.