Some of you have noticed I haven't been around a lot lately. Some of you who are FB friends know I was in the hospital a week ago for a week, 5 days in the ICU and 2-3 days in stepdown. Also, many of you know that I have been talking about going to see someone to get my "chemo-brain" looked in to for the past couple of years, and I had promised to let everyone know how that had gone once I did it. I am copying and pasting a note from my Facebook about what's been going on. All of the testing was really complicated and really exhausting...feel free to ask questions if you've got them.
Love to all,
Bev
The non-joking side of "chemo-brain" I have been talking about having my neurologic system checked out on and off over the past couple of years. I had noted some pretty worrisome stuff with my thinking/concentration/memory and felt like I should probably have it evaluated. I have also poked plenty of fun at my "chemo-brain" over the last 3.5 years that I have been off chemo....sort of a sick-irony kind of thing. My beloved dad was my life-long source of Alzheimers jokes, shaming me when I laughed at them, especially when he succumbed to the disease. Certainly some of my motivation in getting my own situation looked in to was to try to be sure I wasn't dealing with early-onset Alzheimer's since I have such a strong family history of it.
Several years ago the University of Rochester published a fairly definitive study about the cognitive effects of the chemotherapeutic drug 5FU. Prior to this, there had been a fair amount of debate about whether or not chemo-brain actually even existed. Well, it undoubtedly does, and I am somewhat f*cked.
I saw a neuro-oncologist at Dartmouth a couple of months ago. She did some preliminary testing then referred me to a neuropsychologist, who did about 7 hours of testing, and all this was followed last week by my hellish hospitalization. It has all been sort of the perfect storm of really bad and really scary information.
I was misinformed/confused about several aspects of the hospitalization, and am still not clear on the whole thing. My blood sugar was not nearly as high as I thought (though high nonetheless ~400) The real issue was that I was "disproportionately" unconscious and wouldn't wake up. I guess I was in ICU for 5-6 days. They went through doing spinal taps, CTs, MRIs, blood cultures and all other manner of torture available, preparing to chalk up my coma as viral meningitis...but it wasn't. Eventually, after every test in the book, and when I regained consciousness (sort of) on the 5th day or so, their best guess was this big time metabolic acidosis AND what they found on my head MRI on that day. Seems I have developed "moderate diffuse" frontal lobe atrophy. CHEMO! So, the synergy between my metabolic derangement and the changes in my brain had my significantly out for the count.
The testing from those several weeks ago show that a lot of my "stuff" is intact (ie verbal IQ and those higher level cognitive skills) but performance stuff is significantly deteriorated. Depending upon the skill required, some problem solving stuff has been messed with. Small motor skills are very significantly deteriorated (so glad I'm not an artist
) There is a lot more information, all of which is depressing, scary and complicated. I have been advised that depression and stress also has a big impact on the manifestation of these issues, so, I am to reduce/eliminate all stress (just kidding)...they are adding another antidepressant to my meds and I'll be thinking about an approach to "stress". LOL. Because of the cerebral atrophy I don't have the "reserve" that I previously did, so I'm going to have to put a lot more effort in keeping myself metabolically stable, not something I particularly have the energy for.
Anyhow, saw my endocrinologist today, and my new PCP yesterday. I like them both a lot, and we're all on the same page. They've both assured me that although I'm still feeling like crap after being discharged almost a week ago, given where I was, and how critically ill I was, it's to be expected. Atypical of me though, I'm scared and do not welcome what this next chapter of my life may be looking like.
Almost 5 years ago I was diagnosed with stage IV colon cancer and was given a 6% chance of being alive today. So, I am. With no sign of cancer. I am grateful for that, especially when so many of my wonderful, beloved friends have not survived. How incredible that the cure has nearly offed me.