... I was diagnosed today (6-17) with CLL. I had my suspicions over a year ago and began watching my numbers but because I was a victim in a crushing accident over 15 years ago my oncologist has been trying to make things easier on me and we decided to forego the pain of a bone marrow biopsy and just watch the numbers instead. Today confirmed everything we were thinking and I was fine, until about 15 minutes ago.
Like I said I am not usually on this end of the needing support but I don't seem to be able to have the whatever it takes to help someone through tough things to give to myself. Over the past couple of years my health has declined to the point of being very nearly 100% bedridden. I get out to the doctors I have to see, neurologist, internist, oncologist and primary care, which is my extensive social life. My home situation is absolutely non-supportive or caring and I have to manage most things on my own, which has now left me without a shower or my hair washed for over a year and that too wears on me.
Will I ever feel normal? I know that I cannot do anything about the pain from my injury and have dealt with that and graduated my two stepsons (both Honors) while struggling doing housework, cooking, etc. Several years ago I managed to get a position working from my home and only having to go to the office for fiscal year planning and inspections, about 18 meetings annually but have not been able to keep that up with all the other things I had to do, so my identity is quite vague and blank. I married into this family when the boys were in middle school and that was a major transition and a lot of problems from the biological mother even though the court granted us full custody and visitation for her during the summer until the boys were 18. That was a huge challenge and I felt like I sailed through that. But for some reason this is getting to me. I know I do not feel anywhere near as well as I did when the chronic pain, wheelchair, body not cooperating with me, etc. was the only issue. In the last year I have become extremely sensitive to smells, flavors, foods and sounds. Is that normal and does it pass? I have been having a lot of cognitive difficulty too, I always feel like I am trying to speak (or write) a language I don't know, (I have to fix, on average 80 errors in a 6 paragraph article), is that something that is also caused by or an effect of this CLL? Or is that attributed to my pain treatment. According to my neurologist I am on a sort of high dose of pain meds and I always put off taking a dose of breakthrough meds (often stretch a 1 month prescription to 3-4 months) because I hate taking medicine in the first place and I have enough brain trouble and don't want to make it worse by taking more medicine.
I am just lost about what changes I need to make or what things I need to do to feel more like me. I wish I could get rid of the pain but that's stuck with me forever. I am usually pretty tough, but this one has gotten to me, it doesn't seem to matter what I do or how much I know and I am usually the one on the answering end of questions or the giving end of needed moral support but here I am.