I'm breathing a sigh of relief now as I sit in a quiet house, feeling calmed by looking at the heavy snow weighing down the tree limbs and the sun shining through the branches, knowing that at least for today I have no more appointments.
My dad just dropped me off at home after an early morning set of appointments, first a CT scan and then acupuncture. Somehow I was able to roll out of bed and into his car at 6:30a this snowy morning after having had a chemo treatment yesterday. Somedays over the last 2 months this may have proved impossible but somehow today it worked.
Since my last post in mid-January, me and my family have pretty much stayed on the single-minded track of chasing treatments to keep my cancer from growing out of control while at the same time doing our best to keep spirits up as we endure this difficult gray weather part of the winter season. All of us have been barely more than anti-social beyond the necessary interactions and as much as this bums me out because it is not our usual modus operandi, it has somehow helped. There are still too many uncertainties and questions to be answered and things to be explained, sometimes it is just easier to let it go unsaid. But that can only last for so long.
So on this sunny morning, I feel that I can give a coherent update. The experimental low-dose chemo that I have been receiving since mid-January has been able to just barely hold-off the disease progression, so the good news is that I am not in that much worse place than I was in early January but the frustrating side of it is that I am not really "better" and the chemo has taken its tolls as it always does. After so many years of this, it is harder for me to counteract all of that, so I'm a bit beaten-down right now but I am not down, not by a long shot.
We continue to work our way towards getting more info on clinical trials and in some cases are starting to take the next steps. It's making our heads swim with so many moving targets at several different institutions, with different departments, and conversations with docs and nurses at different stages, and transfer of hospital records never going as easily as it should (hello...I thought we were in the age of electronic medical records, turns out this is only sort of the case...apparently the computers at X giant hospital in new york can only speak half the language of the computers at X hospital in MI and none of them speak the same language as X hospital at famous university in TN). WTF people.
On top of that the docs at hospitals in our own back yard flip flop back and forth, one day saying they can't do anything more to the next week, someone else seeing my case (because we bargained or harassed them to look at it) and saying that maybe they can actually help but we might have to decide fast with little time for consideration of the impact it might have on other irons we have in the fire. It is totally mind boggling.
Meanwhile the ups and downs of how my body feels vary so much from day to day that I can't find reliable patterns. So I am kind of stuck in limbo. I am not teaching yoga right now and I miss that tremendously. And I am not really doing much of anything that my "normal" self would consider useful. As counter-intuitive as this is for me and my personality, I am not really going to do anything about it right now because I can see so many wheels turning all around me with all the possible treatment timelines that I seriously have little idea what next week's schedule will look like let alone next month's. For now, getting this bi-weekly low dose chemo is still the focus until something better comes up or it stops working, either way it's impossible to guess when that will be.
Every message, email, card, and financial donation I have received in the past 6 weeks has meant so incredibly much to me. The love and generosity that so many of you expressed is overwhelming and uplifting. You have helped make it possible for me to afford the chemo that has gotten me through the last few weeks. You have helped me keep my heart fire lit even when it felt like I was trying to stoke flames from a crappy little pile of ash. Thank you all tremendously. In time, I will respond to you each personally as soon as I can. Just know you have helped so much already.
Next steps that I know right now are to get some exercise this weekend so that what's left of my muscles don't get completely eaten by my body (and the stupid cancer), meditate on all the things, try to do get thru some yoga flows at home, remember to go get blood draw tmrw morning, have some fun this weekend with the kids, lots of hugging my husby and boys, hang out with my sister who is on vaca from work next week, drink lots of green juice and protein shakes (gah) to be ready for next week's chemo on tues & fri, then acupuncture mon & wed, and meeting with new radiation oncologist on thursday. And about 20 phone calls about clinical trials, and don't forget helping husband to get kids to and from soccer, lacrosse, karate, and music....and did someone also say something about figuring out how to expand our recently shrunken family meal selections from pasta and tacos to maybe something more exotic like sloppy joes and rice bowls? jeez.
Much love to all.
