Round Two - Hope

I have mentioned Fr. Mac before, and here he comes again.  He told me once that the worst thing you could do to another human being would be to take away their hope.

We have had the following question/conversation in our family a few times - which is the best one, Faith, Hope or Love?  For me, if you lose love, there is always the hope that it comes back, perhaps in another form.  Faith is like the adventure of climbing a mountain in (sometimes) heavy clouds sometimes with no leader, a lot of times alone, believing nonetheless (having faith) that there is a place for your foot to land every time you lift it.  Ultimately there is hope that God is there at the top of the mountain cheering you on, awaiting you with open arms -sad for the pain you suffered on the way, happy and proud of your journey (hopefully), and welcoming you with love.

It is all really good stuff, Faith Hope and Love.  I would not like to live without any of them, not even for a day, a moment.  Hope is my favorite, though.  I think if the whole world thought about it, it would be theirs too.  This last week hope is what I needed.  

Monday, we were back at MSK for pre-surgery for a minor procedure to place a "Power Port" under my skin below my right clavicle bone.  This device allows the doctors and nurses immediate access to my main artery for chemo, other drugs, fluids, even dye for radiation with contrast.  They can also take blood (they do this a lot) from the Power Port much more easily that finding a vein in my arm.  I have had a temporary one, that I hate, and so it was time for my big-girl one.  The procedure was a piece of cake (if you were the cake getting cut while under a MILD sedative).  Yes, I was awake - they told me I would not remember a thing.  Liars.

Tuesday's events I remember clearly - the whole thing (surgery) started with a discussion initiated by me of Propofol (short-acting general anesthesia) as I was being rolled into the OR, and my general preference for it, versus whatever mild sedative they were peddling.  After administering the initial dose of whatever no-pain-won't-remember-anything-sedative they used, Michael Jackson's "Rock With You" came on over the radio.  "HA!" - I attempted to persuade- "it is a sign, MJ used Propofol to sleep, he's advocating for me from beyond!"- they laughed and mumbled something about hoping I wasn't trying to make a living as lawyer with that kind of argument.  Whatever sedative they used, did bring me back to a party I went to in the 8th grade at Roller World on King Street in Honolulu - Good Times.  I remember the whole minor surgery AND the ongoing very funny conversation about old-school roller skates that are SO rollin' back into style.  Put me down as pro-Propofol, please.

From this surgery, I was to go straight to PDH (Pediatric Day Hospital) to start chemo.  It turned out that it was too late in the day for the chemo, but they wanted to send me to PDH anyway to hydrate me for the next day of chemo.  I was pretty sore from the surgery, so they brought me something to put into my (new) Power Port.  It was some pain med that started with a "D."  This horrid med made my head feel like hot ants were released into it, and there were suddenly two of everyone and everything in the room, then the all-too-familiar-foe, nausea had taken residence - ugh!  This nasty, unappealing-on-every-level feeling, along with its impolite side effects, stayed with me through chemo the next five days and on.  

Wednesday, we arrived at MSK by wheelchair as usual (but never more appreciated) for chemo.  I was still nauseous from the 'pain meds' and sore from the surgery by-the-way.  This second round of chemo included the Mac-Daddy Chemo -Cisplatin and a second Chemo - Ifosfomide.

Thursday, more chemo of the above varieties.

Friday, hydration, a few anti-chemo side effect meds, white cell count increasing stuff, and some - as it turns out - wildly ineffective anti-nausea meds.  Which brings me to the hope.  I needed some.

Saturday & Sunday.  We had planned to leave NYC on Friday after treatment, or early Saturday morning for home.  The overwhelming nausea and fatigue was debilitating by Saturday morning.  I lie in bed until Sunday morning when a different prescription started to have a mild, semi-glorious effect.

Without hope that this dreadful state of affairs in general would somehow improve,  I would have only despair.   It has been made clear to us by my doctors that my life and certainly my leg will be different when I am mercifully done with all treatment.   Neither of my very fine and very capable doctors would tell me they could fix me if they couldn't.  They have said the process is grueling, but they can fix me.  I hold these words in my heart with great hope (and a little fear).

With my supernaturally devoted husband, sister Katie, and brother-in-law Lou, by my unsightly side, I did (and regularly do) receive hope from them in this wobbly state of affairs.  The oddly mixed village of friends, family and acquaintances that has taken up ways great and small to give me hope are remarkably and unexpectedly wonderful.   I am humbled by it when I let it all soak in, and more than that, I have hope from it.

If there is a message to be had here, it is surely to not take away another's hope, and unselfishly, wholeheartedly offer hope whenever possible.