Well I’m back in this dreadful hospital room hooked up to this clicking and whirring machine that insists on killing [part of] me not-so-softly with the “harder B-block” of R-HyperCVAD. They are measuring my urine pH and I am peeing every 20 minutes, returning inedible split-pea soup and gummy cherry cobbler to the cafeteria, and trying to get some reasonable sleep in spite of the regular vital sign checks, eye drops every 4 hours (including 2:00am and 6:00am), chemo and saline bag changes, measures of my ever-increasing weight, and inquiries about the movement of my bowels. All of that to say, I’m have the suckiest time of my life with the nicest people I’ve ever met. The providers here are consistently great, so gentle and compassionate in spite of their extremely annoying, albeit lifesaving, jobs.
So my attitude seems to have changed in the past week since my bubble was burst with those discouraging PET scan results I got last Tuesday. It said that the largest tumor in my abdomen only shrank by 50%, not the 100% that we were expecting which is very disappointing. So I’m back to angry about this interruption in my life and that it is going to take a minimum of 6 weeks longer than we anticipated. I hate being angry, it’s my least comfortable and least congruent emotion. I’m trying to stay focused on today and “putting one foot in front of the other” as Dr. Langston says, because I believe the course of treatment we are on is still going to work even if it has to take longer. However, the news that the cancer hasn’t responded to chemo as quickly as we had wanted it to means that we have to start thinking about stronger drugs with worse side effects and alternative therapies in case we find that after two more rounds of goddamn chemo the fucker has persisted in sticking around my belly and is determined to be “chemo resistant.” It scares me to think that the path of least resistance, the plan that I feel like I understand, the plan that has me back to work by August/September rather than October/November, may not work.
You may have seen my very tasteful Facebook post about this… “fuck you cancer”… another classy moment for me coming out of anesthesia or getting diagnostic information. Not that receiving unexpectedly bad news is ever graceful, but haven’t we learned by now that when I’m sedated that I should probably be awoken by harp music on a bed of roses being told stories about happy puppies? Not doctors or nurses telling me that I’m not responding well to treatment and that I should calm down while sitting on 50 threadcount sheets in bad lighting with shooting pains just above the crack of my ass. No ma’am.
All is not lost however, there is no cancer in my bone marrow or spinal column. Also, the cancer is localized and doesn’t seem to be moving to other organs or systems, which is also good. So, yay, guess I sortof buried the positive lead on that one… forgive me, the dark stuff is just easier to report. This means that we can go ahead and collect my stem cells in this sci-fi looking hemopheresis machine in a few weeks. WHEN we find that the cancer is gone after another re-staging PET scan after round 5 of chemo THEN we can proceed with the regularly scheduled stem cell transplant, probably sometime in July. 100 days after that I’ll be magically cured and back to life, right as rain. Sigh… Clear as mud? I guess that’s October…. fuck. My dad probably explained it better on his blog, so check it out in the link to the right.
So what to do with all of this bummer information? Clearly irritability, anger, and resentment that my life will be frozen in purgatory for even longer than I wanted seems appropriate. Moaping around the house, not returning phone calls, baking myself a whole strawberry cake to eat and lying to my parents about the evidence that I made it to bring to a dinner party. Reasonable right? Dragging my feet into the hospital by refusing to wash clothes, pack, take the pre-meds I’m prescribed, or register with admissions before showing up this time also seemed to make sense. Making little gagging noises anytime someone uses the words “chemotherapy” or “cancer” is like a totally mature way of handling it. Looking at my bald head with disdain and obsessively brushing my remaining thinning eyebrows to see how many more strands are coming out seems productive. Fur sure. Or not.
So what might be more helpful? I’ve talked with a few of my therapist friends about “radical acceptance” and using my “wise mind” (the place where your reasonable mind and emotional mind overlap). I have been told directly to “Put on your big boy pants and do what the doctors say. You don’t have to like it, but if you can accept it then you can do what you need to do to get through it.” I guess that’s how I’ve been coping with this shit all along, trying to stay in the moment and do what I have to do because complete denial means suffering or even death and acceptance means peace and healing. So I tell myself that I’ve never liked coming into the hospital, this stay seemed worse at the beginning but now that I’m here I realize it’s just as mundane and eventless as the previous three times. Also, it’s not so bad to have people take care of your every need and bring you life saving drugs. I’ve never liked being away from my work or my friends, but I’ve found ways to work around that and have even cheated a little bit because it feels good to be naughty (sorry mom, dad, sis, and bro if you are reading this… I’ve not really been that naughty.) I stopped taking care of my body with food and exercise while I was feeling paralyzed and afraid (and recovering from a nasty incision near my junk that made it hard to walk and easy to feel sorry for myself), but I’m better now and should take better care of myself. So I am.
As we learned with George W. Bush, all suck-ass situations come to an end eventually. There may be aftershocks down the road (like continued tax cuts for the wealthy, wars in Iraq and Afghanistan that we can’t seem to get out of, the Defense of Marriage Act, and of course the inevitable shamelessly self-promoting autobiography (READ: breaking ned blog)… but we’ll deal. This is a marathon not a sprint and I’ve got some of the smartest and most compassionate people in the world looking out for me. My Obamacare bill, don’t ask don’t tell repeal, and economic turnaround are coming. Trust.
Fitting the stereotype to a perfect T, I’ve also got my divas for strength. So according to Estee Lauder (and of one of my most favorite brilliant witty friends Colby) “There is no such thing as an ugly woman (or gay man), just a lazy one.” Well the only straight I am is I’m a straight up bitch and I refuse to be lazy or ugly. I’ve got my paws up and my head held high, so just try to understand that I’ve given all I can and you’ve got the best of me. So give it to me, yeah, no one’s gonna stop me now, because I’m irreplaceable and your love, your love, your love is my drug. Bam!