Testing 1, 2, 3…..

Despite my  intent to write a caringbridge update in December then January, it has stayed a task I avoided as I wondered both “what to say? and “do I have to?” Thoughts I tend to have when I actually have few thoughts. But I know that many of you wonder if my bags are packed for Philadelphia. They are not quite yet.

2012 was a tough year in my treatment experience, largely because I never believed my treatments could be so unsuccessful. (I can state that “I am terminally ill with a hard to tame disease”, but that does not mean that I really accept it myself.) I went from one unsuccessful treatment approach to another as some tumors responded but new tumors grew. By the summer I was on a chemo that actually burned my butt, feet and hands – very surreal. You accept it in the moment because it is the reality but when you look back it’s like, “Wow. Really?”

My current treatment is considered easy to tolerate and it is. I expected to ‘graduate’ in December and was surprised then demoralized when the retrospectively obvious was stated for the first time – I should stay on this chemo for the complete 6-8 cycles (eg months) if it might be working.

This delays my start at UPenn. And the easy to tolerate chemo routine becomes less easy to tolerate as the effects are cumulative.  I find it harder to breathe when active, always unnerving. (The doctor says my lungs are not filling w.fluid – very good news.) Breathing hard after walking is just another side effect of treatment. The other morning when I biked to chemo, parked and got on the elevator with a security guard, I could see his concern at my heaving breathes. I hate that. It took almost 10 minutes to settle down so that I could talk. The same thing happened yesterday when I walked to a store. All Fall I tracked my hair loss to see if my thinning process would, in fact, lead to baldness. I felt triumphant as I still looked ‘normal’ in December but can I stall the effects of my hair loss for an entire 6 months? (You may wonder why would I even care. Well, I care.) Then there is the start of neuropathy in the fingers and toes.

I know the escalating breathlessness will disappear post chemo but neuropathy tends to stay a permanent companion. I accept these side effects of trying to stay alive, each of us has a similar list of barriers and struggles, but in the weeks leading up to a scan (vs the great cancer vacations of months like October and November) I find myself less patient with the equation. “All this and I’ll probably still fail my ct scan!” Such thinking happens. For those of you positive-thinking-all-the-time folks, please know that I have assumed the best when having most of my other ct scans and gotten walloped with bad news, so honestly, I dont think I am growing my tumors by wondering just what all my chemo distress is accomplishing. I have even added in two days fasting before and after each weekly infusion since early research shows it can reduce side effects and may amplify the chemo focus on the cancer cells – I am working hard to tamp down my tumors.

The delay frustrated me. It continues to frustrate me because I have no desire to spend my summer months traveling back and forth to Philly. This timeline should have been fairly obvious at the outset but communication and leadership is all the more challenging when you change providers and have a long distance trial you are trying to accommodate. Mainly I stay frustrated that so much of my life is about staying alive and the suspended state it requires. I vowed to find my footing in 2013, reclaim my life but building a life beyond the constants of daily health care regimes is just not that easy for me. I have only so much energy. I have only so much vision.

I have deemed myself in a malaise and thus exempted from much more then putting one foot in front of the other this December and January. But you wonder and ask what is going on with UPenn, which I appreciate. I will be scanned in late January with results on the last day of the month. Because my blood work is not an indicator of what is going on inside me, this will be the first real check-in since early August. If it shows no new tumor growth, I will stay on the taxol/avistan combo through mid-March or possibly early May. At that point, if declared by my doctor to have had an ‘optimal response’, I will then transition to the UPenn trial. UPenn requires seven visits to Philadelphia in a tight numerical sequence. (And forget about that corporate jets transportation.) I am still not ‘in’ the trial until I physically go there, get approved and sign the paperwork. Until then my slot can go to the next candidate but as I have worked for 18 months to qualify so has every other candidate faced these barriers. While it has been tempting at times to give up on this trial, my heavily treated body is no longer eligible for most trials. And UPenn stays a dynamic place for cancer break-throughs.

In the meantime, I stay distracted with the endless paperwork of being alive. And I scheme (thus far unsuccessfully) about a winter trip to somewhere warm and sunny. Or just warm.

Malaise – it’s a lovely word that hits the spot even when you are not quite sure what it means. It is “a general feeling of discomfort, illness or uneasiness whose exact cause is difficult to identify.” Okay, i probably dont qualify for the latter part of the description but I still claim the malaise of December and January and do not see it as a negative thing. I had lovely holidays. I enter 2013 with hope. And that sense of malaise that sits with me like my knitting, well, I think it is just fine for now.

Thanks you as always for the many kindnesses that keep this journey just fine for Mike and me.

warmly, marcy

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