I continue to do my best to be grateful... Grateful to be alive, that my treatments were straightforward and without complications (until now), and grateful to have the privileges that have allowed me to go through this, heal, and process without a whole lot of situational worry.
That said, I have to keep discussing the complications, which really are a total surprise. It seems funny to me that I powered through chemotherapy, a bilateral mastectomy, and radiation treatments and never felt much worse than I have felt off and on this last month. And all because of some little pills. It is astounding to consider the brain, and how easily it can be altered and manipulated.
Six weeks after taking my first Tamoxifen pill I sat down with Dr. Raish to discuss options. Actually taking those daily pills only lasted three weeks (refer to the prior blog post to read more about that). I knew I would have to take some kind of anti-depressant medication to be able to get back on Tamoxifen, so I left with my prescription, oddly looking forward to taking that first pill, and starting on the road back to productive recurrence prevention. I don't know how many times in this blog I have stated that nothing is simple or predictable, but... nothing is simple or predictable. An hour after I took the first dose of Effexor I was miserable. Very painful stomach, very painful head, disorientation... I was roasting hot. I woke up on my 50th birthday in that state, and spent the day waiting for the drug to pass through my system, alternating between my bed and the couch. The only substantial amount of food I ate that day was, appropriately, a slice of the birthday cake Ani made. I was much better in a couple of days, fortunately, as Jon's long planned birthday bash was happening. I have to say that as with our wedding, which Jon made sure was big when I was sure I wanted small, he was right again to insist on a big celebration of a big milestone. Ribs, barbecued tuna, a band in the back yard all hit the spot.
I was surprised to get a call from the nurse yesterday telling me to go to the pharmacy and get a bottle of Effexor in a smaller dose and try taking the pills again, every other night. I ate a banana, swallowed the little pill, and went to bed, pretty anxiety filled. I slept the night at least, but woke up spaced out, a little nauseous, head-achy. This lasted the better part of the day. I am hoping that as I take little doses of those little pills, over time my body will adjust and let them do their work. And then get back to the business of taking the Tamoxifen.
My family is getting used to me, after a short hiatus of being pretty well and full of energy, again being a fairly useless blob on the couch. We leave for about ten days of togetherness on a road trip through California tomorrow. Should be interesting... :)
Tuesday, June 11, 2013
Long time no see. My writing brain completely shut off for a while, and I have no idea whether this is a one time return or something more. I have been in a strange land. There are questions with no answers, and struggles that cannot be described or defined by chemo, surgery, or radiation. I thought that on April 11 as I gleefully left the parking lot where I met the van for the last time, I was done. I should have known from experience that nothing is that simple, or that well defined. I thought I had powered through the hardest things about cancer, namely the aforementioned causes of physical misery that are the standard pieces of cancer treatment.
Not so. Like that strange, dark time between diagnosis and the beginning of treatment, this time between treatment and for me, what is next, is difficult. Between diagnosis and beginning treatment I was lost. I thought my death was imminent, I thought cancer was overtaking my body, now that I knew it was there and for that long two weeks without any poison in there to kill it. I was confused and devastated, and very, very lonely. Cancer is nothing if not lonely, no matter how supported I felt by others. The experience is its own solitary confinement, at times physical and most definitely emotional.
During treatment, while physically and psychically difficult, there was a job, something to count, an end of this or that challenging phase. Being sick on the couch was my job, and going to appointments. I needed to take care of myself, be cared for, and survive. It was pretty straightforward.
My neighbor, a 30-year breast cancer survivor, told me repeatedly to give myself six months after the treatment, to really heal. I thought, whatever... I didn't know what she could possibly mean. Now, about a month and a half into the post-treatment, I think I get it. I feel like I have gone through a surreal, science fiction-y assembly line, with all manner of procedure, and been spit out the end of it reassembled in a different form. And I'm not sure I feel too well aquainted with this new life form that is me. I look different, my body is different, my mind is not up to par. The clean slate to which I have referred over and over is terrifying. Out with the old, every last body and brain cell of it, is how it feels, and it is difficult to evaluate or understand what's left.
Also, the chemo-surgery-radiation trifecta and its concrete starts, sufferings, and finishes was not all there is to this. I found this out a few weeks ago when I started taking Tamoxifen, presumably for five to ten years. I never considered that this was a big deal, taking a daily pill, but it turns out it is. Eight days into it I experienced some pretty astounding and debilitating side effects, mostly in the form of an extremely sudden onset, utterly crushing depression. I have a very clear memory of that eighth day. I was on a five mile run, doing my usual daily thing. As I rounded the last curve heading east on the lovely Alderbrook lagoon trail towards home, I had this exact thought: I am so tired! I am so sad! There was no good explanation for it but from that moment I was toast. It is hard to describe, so I'll refer you to www.hyperboleandahalf.blogspot.com for a perfect description of how it felt. I continued taking the little white pills for a couple of more weeks until my appointment with Dr. Raish, during which I must have terrified him by crumpling into a puddle on the floor. Three weeks prior I was healthy and feeling fine, and now this. He gave me some choices, which I did not process through well enough. Determined to stay on the drug, I left the doctor's office and went swimming, after which I proceeded to be unable to focus on simple tasks and found myself putting lotion on my soaking wet self, having neglected to dry off at all. I stopped back by the doctor's office where my wonderful doctor put me in a room all over again and we established that I absolutely had to stop taking the Tamoxifen for the three week interim between our appointments together. He said that regrouping in three weeks was medically fine and if this were his family member he would take her off the pills. Around five days later, what had felt like a few bricks pressing on my forehead began to abate, and slowly I started to feel like me again. Only now, a couple of weeks after that five days, am I starting not to feel exhausted and confused, as though I had been hit by a bus and was trying to recover.
So.... Wow... Pretty much all I can say about those little white pills. I am going to have to either use a different estrogen suppressing drug, or take an anti-depressant alongside the Tamoxifen to make it feasible and survivable. And here, I thought I was finished.
So, there you have it. Post-cancer, Chapter 1.