A bit better today.

This week has been a trip to say the least.  But, perhaps we are getting a take on how this crap is gonna roll.

The first 4 days were certainly the worst ~ most exhaustion, nausea, neuropathy.  B is pretty certain these effects were all related to the infusion of oxaliplatin.  We were able to manage the nausea with marinol without having to resort to the decadron or ativan.  However, at the dose we had, I was promptly zonked out.  Now, in retrospect I've learned a couple of things:
1.  As much as I hate it, sleeping through the first couple of days may NOT be the worst plan.
2.  Given fatigue caused by the chemo, it is a little hard to determine that effect vs the marinol.
However, yesterday B was able to attain marinol at a lower dose.  Since using that scrip, I have been able to manage the nausea without becoming a total lump.  Simultaneously, I am also certain that ever so slightly yesterday, and more so today, the horrible tiredness induced by oxaliplatin, is beginning to lift.  Yesterday, I was able to do the elliptical for 10 minutes with a distance of ~ wait for it ~ 0.3 miles!!!  Hey!  I was shocked I could perch up there for ten minutes!  Today, I did another 10, and without trying to be crazy, did end up with 0.8 miles for my effort.

My fingertips are still a bit numb, though typing is not as difficult as it was.  Cold isn't causing as dramatic "jingy/jangy" sensations.  Still, when simply sliding some books on a shelf, so as to insert another today, my fingers went nuts.  Weird!  Warmth has consistently helped a great deal and was very necessary in the first couple of days post infusion.  I am still a bit worried about my veins taking me through this, largely because of how my right arm continues to respond.  The pain is better.  Deep tenderness likely due to chemical irritation from the infusion of the drug is lessening.  I think I am experiencing more of a neuropathy as the cause of pain.  B notes my arm was very cold for the entire duration of my infusion at the center, and that may well have triggered at least some of the problem.

B is working hard to keep me fed and loved.  He has been making sure I have something on my stomach before taking the capecitibine twice a day.  I think its contribution to my status consists of  abdominal pain and cramping with (from what we've read) relatively mild diarrhea, that we've managed with about one dose of imodium daily.   No problems with palms or soles thus far.

So, our current plan for upcoming days and treatments include -
1.  Take marinol BEFORE the next infusion.
2.  Keep my arm as warm as possible through the infusion.
3.  Quickly request an increased IVF rate and decreased chemo rate if needed for burning.
4.  Face the fact that I will crash - be miserable, pissed, and yucky  - for a good 4 days after the infusion.
5.  Use higher dose meds in the first few days, wean off them as I can.

Of course, you know what they say about best laid plans!!  We'll see what happens next.  As B says, this adventure is like a trip to a foreign land.  By the time we're done, we'll know all the side streets and short cuts.  At the moment, we still feel rather lost and overwhelmed.

Still, it was really nice to feel a bit better today.  And it was very special to be able to celebrate an improvement with this beautiful delivery from my sister, Kik!  With so much more beauty to come!!

Thanks, Kik.  Continued deep appreciation for the love and support all of you continue to send my way. - love, les