eventually, the m.r.i. would indicate that my brain was clear. but the ct of my lungs would show that, unusual as it may be my difficulty in breathing was indeed due to the cancer. he said, "your tumors are in all the wrong places." some, in fact, had caused one of my lobes to collapse... which explains why i was struggling to get my breath!
so... i started the clinical trial in early september.
ian has wednesdays off... so he faithfully drove me there and back (& still does). i think it's probably a good thing for him to see me there. i'm guessing it helps him to acclimate to our shared reality. anyway... we enjoy the time together until i drift off to benedryl land when he continues doing whatever he does on his computer.
the side effects for this regimen are minimal compared to some of the other treatments i've endured. still... they're challenging. there were 3 of the 8 weeks when i couldn't have the infusion for one reason or another... usually because of low phosphorous or low platelets. beth might disagree with my assessment of how things have gone. as the main bread-winner now... as well as my nurse... it takes it's toll. i know there were days when we'd look at each other and know that what i was experiencing wasn't sustainable. i lost nearly 20 lbs. in that first month and a half before meds could be adjusted to get things balanced. more than ever before, i encountered the direct correlation between what & how much went into my body vs. how much energy i would have.
the study runs in 2 month cycles... each one ending with a ct to give direction as to whether or not the treatment is effective and should be continued. i completed my first 8 weeks at the beginning of october and was hoping for some clear indication of progress... but my heart & my body were telling me that the results would show a mixed bag at best. i was breathing better, but i could feel new lumps developing under my skin. such hints forced me back to rely upon G*D above all. the best possible spot to be.
the incredible news was that the ct showed an 80-90% reduction of the tumors in my lungs! that was fantastic news... especially with this type & stage of cancer. other tumors had shrunken by 10-30%, which is great as well. but other tumors had grown... and even worse, new ones had popped up in new places. not good.
a mixed bag indeed.
however... the improvement in my lungs was enough to give us the green light to continue the treatment. the hope & prayer is that sooner than later the rest of my body will begin to respond as my lungs have.
i have to admit that on those days when i lose perspective, this all feels like a race against time.
due to those left-butt-cheek tumors, pain very quickly became a constant issue. my hip & thigh were the main culprits. they put me on painkillers 24/7, and taught me some tricks designed to help me stay in front of the pain as things continue to change.
another med was ordered to boost my appetite & energy... and it worked. slowly things began to turn around and feel a bit more normal... then they gravitated to the other extreme. even with the low dosage, i hardly slept at all. i got a lot of things done around the house though... and learned a few things about myself along the way that i may share later.
of course, that pace wasn't sustainable... so a new med was ordered to counteract that med... encouraging me to sleep at night. seems to be working at this point... but from time to time i still wake up in excruciating pain.
and so we adjust... and the cycle continues.
people ask if these past couple of years have felt like one battering ram after another pounding down my castle door to allow some marauder to enter & shove my face into the dirt.
kind of, i guess. but not really.
it's true that i never know what's waiting around the corner. but it's also true that almost every face plant has been preceded by a warning shot of sorts... signally me to brace myself for the intruders about to cross the moat.
maybe i'm just desperate... but i began to view those alerts as slivers of G*D's love & kindness... tidbits of his mercy... proof that i was not alone or abandoned... and that he was/is there to take care of me.
so... i can't say that i was completely caught off guard by how the summer ended and these new subway stops at which i find myself exiting only to stand on dark & unfamiliar platform in some distant part of town. of course... to suggest that i was prepared to hear the cancer had spread would be terribly inaccurate as well.
but the slivers, the hints, the clues... they all expose the many threads the sutures buried over the years. threads that now bind me to The-One-Who-Sews-Me-Up-Every-Time. when i turn my head, his rod & staff are always there in the corner of my room.
and i'm not alone...
...unless i choose to be.