Today was my third chemo infusion (the long one, because it is both Avastin and Carboplatin, plus steroid and anti-nausea), preceded by my monthly neuro exam.
I did pretty well with the neuro exam (100/93/86/79/72/65/58/51/44/37/30/23/16/9/2; avocado/monkey/softball, etc.) - EXCEPT that something is affecting my vision. For the first time, I was unable to see the nurse practitioner's finger wiggling in my upper left field of vision. I could tell there was a hand there, but I didn't see the finger (much less the wiggle) until she brought it down & closer. That was a first, and while she didn't make a huge deal of it, it was noted and will be followed, and it was nonetheless the first "clinical" manifestation that has shown up in a neuro exam. She also commented that one of my pupils is larger than the other, although she said she had noticed that before. No idea what all this means, so naturally I started conjuring up theories of rampant tumor spreading. Of course, I called my brother (Dr. Jim) to talk me off the ledge, and as always, he offered some plausible reasons not to worry.
My next infusion is in two weeks, and my next MRI scan is on December 13. They almost tried to get me in on December 12 (aaaagh - 12/12 - my craniotomy anniversary and those unlucky twelves!!!), but I was able to get a "luckier" date. We have no idea what the next MRI will show, and how that will impact our Christmas plans, but I was told that the last four patients who have been using this protocol have seen good results, including shrinking of the tumor. So I hope and pray that I can be number five. My husband and I have a tradition of giving each other one Christmas gift that cannot be purchased, and I think that good news about my treatment would be one he would like. Much nicer than last year's pre-Christmas craniotomy and cancer diagnosis.
My chemo infusion went well. I brought my laptop and did some work to pass the several hours that I had to spend there. I was able to drive myself home, but I have been enduring a nasty headache (typical side effect of the anti-nausea drip, plus lots of time on the phone and computer, and some minor stress over the eye thing). I forgot to ask about what to take for pain, because:
1) Tylenol is tough on the liver, and so is anti-seizure medication and chemotherapy.
2) Aspirin and ibuprofen can cause bleeding and ulcers, and so can my chemotherapy.
3) I work with a company that has a really great electrostimulation device that works miracles for pain relief (www.nrg-unlimited.com), and I own one of the devices, but electrostimulation is contraindicated for malignant tumor sites.
So for now I think it's down to good nutrition, staying hydrated, practicing stress management, and getting some rest (and probably wrapping up this blog entry to give my eyes some rest).
As I returned home today, I stopped by the mailbox and got another side effect of my chemo treatment, although this time it was financial instead of physical. My insurance won't cover my new chemotherapy, because it is still considered experimental. $8500 every two weeks goes into the "Patient Pays" column. Right now it's just a minor annoyance instead of a major worry, because long ago my doctor's office mentioned that possibility with experimental treatments, and they said they know how to fight with the insurance company to get it covered. Hopefully they will. After all, my tumor has become resistant to the covered chemotherapy, and this new stuff is the best alternative for me. If worst comes to worst and they are unsuccessful getting reimbursed, I guess I just fork over a little money at a time, giving my doctor lots of incentive to keep me alive and capable of working for many years!
A fun day, indeed. At least I can be grateful that:
1. I'm HERE.
2. I could walk my son to school and drive myself downtown for treatment today (and I didn't get lost or mangled in an accident).
3. I had access to gold standard treatments, and since those stopped working I have had access to promising new stuff (and the insurance problems probably won't keep those from me).
4. I had friends who were more than willing to take care of my kids, so that today became a fun playdate for them instead of "Oh, no - Mom has to go to the hospital again".
5. I have a brother who can talk me off the ledge.
6. If worst comes to worst and I do go blind: a) I won't see cellulite, wrinkles, clutter, or "impulse buys" at the store; b) my son is learning to read to me anyway, so we can still have delightful storytimes together; c) my husband loves new techno gadgets, and there are enough voice-activated computer gadgets that would let me keep blogging and working and doing other writing projects; d) I can still hear (and sing) beautiful music; e) I remember most of the book and movie Gone With the Wind, so I can still enjoy it without sight; f) it would take away the temptation to peek at my MRI films before the doctor reads them; g) I always wanted to learn braille; and h) maybe this would make a private limo service a tax-deductible medical expense????
7. I know that this process continues to be watched over, and I continue to be carried through this on the prayers of many (thank you!!!)