Exhausted

Eight years ago, when I was recovering from open heart surgery, I wrote that it was difficult at times to stay focused on recovery and feeling better. That was a big surgery, yes, but within two weeks my prospects were good again. There was no protracted treatment or life impact, except of course for focusing on living a healthier life. That experience proved to me that a positive attitude is both a discipline - a constantly cultivated perspective - as well as key to a healthy outcome.

But Elaine’s experience is showing us that maintaining a sunny disposition becomes far more difficult as the challenge drags on, and the prospects for getting better become more uncertain. The most difficult part of a long disease could be the exhaustion that ultimately can overwhelm, or at least shake the resolve of, even the best efforts to remain positive and clear. After 6 months that have included 5 hospitalizations, 4 surgeries, an emergency visit and 5 cycles of having poisons infused into her body, Elaine and I are having our resolve tested. And we know we have a very long road ahead.

Elaine’s illness has been disruptive enough for long enough, it seems, that we can’t help wondering whether anything will ever be the same again. For Elaine, life has become a relentless cascade of petty physical torments: the loss of her hair and eyelashes, a runny nose, intermittent nausea, torrential nosebleeds, a diminished ability to taste, a heightened sense of smell, numbness in her fingers and toes, aching joints, bruising, night sweats, alternate bouts of diarrhea and constipation, and the ever-present worry of more exquisitely painful bowel obstructions.

And then there are the administrative aggravations. Continual doctor appointment mix-ups. Bills for medical services, many that are incorrect, that seem to arrive without rhyme or reason, all of which take time, attention and psychic energy to sort through. Our patience is shorter than I remember it in the past.

The other day I brought up the fact that, when she has graduated from this first round of chemo-therapy, it may make sense to immediately reach out to the researchers working on genomic, personalized therapy treatments. Elaine knows this is the next logical step, but she responded that she needs some time to be normal again. I know this is right. But there is also the nagging urgency to do what is possible. The stakes are so high.

 

*****

After our 4 day adventure at Baptist Health System in Miami dealing with a bowel obstruction that was related to Elaine’s extensive scarring from her abdominal surgeries, Dr. Buckley, Elaine’s gynecologic oncologist, suggested postponing her next chemo treatment for a week, and leaving Avastin off.

That seems like a good call. The chemo is preceded by steroids that have a buoying effect, but within a few days you’re overcome by flu-like aches. She needed the extra week to recover from her hospitalization.

I worry about the Avastin. The immense cost aside, around $72,000 for a course of treatment, this is a technologically amazing drug that, in Elaine’s case, is intended to inhibit the development of blood vessels that would feed the tumors. But it’s performance has been mixed so far with different forms of cancer. In late July, an FDA Advisory Panel voted 12-1 to rescind its approval for use with breast cancer, Applied to ovarian cancer, it has bought patients an average of only four months of slowed tumor progression (which translates to extended survival). But there are also many side effects, some of which can be severe. One wonders whether it is worth it. Another terrible point of uncertainty.

So this time, the aftermath of the chemo treatment was noticeably muted. The aches were less pronounced and she was more mobile again more quickly. On the other hand, it has taken longer to feel really better. It’s impossible to sort out what’s really going on here, though. There are three other, very powerful drugs in addition to the Avastin, the impacts are cumulative, and the agents undoubtedly interact with one another.

Like all patients in dire circumstances, we want anything that might help. But Avastin’s (non-financial) cost to benefit value doesn’t seem worthwhile yet.
 

*****

The story is not only dark; we continue to have a bright life as well. Elaine remains unable to resist wisecracking, with me, more often than not, the object of the wisecracks. She has settled into a new routine. She has been consuming books - in audio and written forms - at the rate of three or four a week. While we were in the Keys, she started painting again. And I’ve even heard her pull out piano fingering exercises, a remnant retrieved from long ago. She’s been exploring new recipes, and has even threatened to resurrect a cookbook project. We’re learning to enjoy the good times in new ways.

*****

This is where we are, fully in it now, beyond the newness or the surprise, and caught up in the all-consuming, traumatic process of cancer care, hoping, like all other patients with a dread disease, to find an escape hatch to the other side. The resources available are true love and attention from family and friends, and a highly mechanized and busy cancer industry. There are doctors who truly care, but there is no cure yet. They can only offer the mostly inadequate, unpleasant solutions that are currently available.

I apologize for projecting a gloomy portrait, but it seems important to try to convey this experience in all its facets, as our understanding and sensibilities evolve with it.

You can contact Elaine directly at 904.993.8185 or at ewaples@comcast.net. The flow of these letters out, beginning with the discovery of her tumors on April 26, are on my site here.

Thanks for continuing to be there with us.

(Elaine and) Brian