Feast of Losses: Mostly about Protons

Stanley Kunitz’s poem below has resonated quite a bit for me over the last month. Sometimes I want to give up on writing poetry. I mean, Why? My work is not that good and many people don’t read it anyway. Then I come across a poem that blows me away and wish I had written it. Here it is :

It’s hard not to count your losses or layers on some days, but as I remember what I’ve lost, I also think what I’ve gained—like everyday that you wake up alive is a good day. I like the title to this poem too because I haved lived my life in layers with several incarnations—writer, mom, wife, teacher, scholar, world traveler, daughter, sister, aunt, cousin, editorial assistant, blue cross blue shield auditor, thespian. I once burned with white hot energy to accomplish something. Now I don’t have that drive.

I like the lines from the poem about feeling compelled to look back and the milestones dwindling on the horizon and abandoned camp sites where scavenger angels wheel on heavy wings. What will I do once almost 2 years of doc appts. and procedures pass? As the poem notes, I have led many lives and hope to retain some of my former self. Cancer has changed me. I will have to gather up my strength to move on— to grow back my hair for the third time and heal. I will begin to eat regular foods again. I can have intimacy without fear of pain. I will find a new way to dress with only one breast and to cover most of my burned skin. I know I’ll find my way. But these are things I’ve lost.

I’ve been thinking about my mortality and George Eliot’s admonition in Adam Bede “When death comes it is never our tenderness we repent from but our severity.” I sometimes wish I had not been so severe with friends, family, students et al. Cancer has at least reminded me that all we have is today.

Despite my last cheery posts and my recent bragging about how well I am doing in treatment, things turned around a bit. Pride goes before a fall!

After my 12th proton treatment, my stomach started acting funny. I was horrified because the symptoms were the same as cdiff, an awful disease, which I had last time. It’s humiliating and debilitating. Finally after a day of gi distress, we called the doc on call and he wanted to admit me, No way. I was not going back to an ER. I’ve had too many bad experiences of waiting and whatnot. I had some old fagelle antibiotic and began to take it. I also started taking florastor, a heavy duty probiotic. My darling daughter came over to help me clean house, change linens and essentially purify everything in case it was cdiff.

The problems didn’t get better so the next day in tears, I texted the nurse navigator, Susan Rutherford, who was so very kind. She said, “Can I call you.?”

I said “Yes, but I’ll cry.” She said, “That’s fine; we will cry together.” I said I couldn’t bear the idea of bringing in a sample and she told she would come by house to get it. I said, “No, no, I’ll bring it by Thompson if you take it to the lab.” She met me at the door and brought me 3 jugs of Gatorade and promised to to find out results soon but in the meantime to keep taking the flagelle.

Cancer can take away your dignity. I joke with the radiation therapists that half of Knoxville and Nashville has seen me naked over the past two years. Now I hardly even think about lifting my shirt to show friends my scars, forgetting I still have one breast. I used to think I had a pretty body and now I know it’s pretty in its own way but my body looks like an abstract painting and it won’t ever be back to normal. That’s a big loss.

For two days anyone who came in contact with me had to wear suit coats and gloves because of contagion but the test came back negative. So that was good news, On Tuesday of that week, I got water for dehydration but no chemo. I still couldn’t eat for two days.

I believe this has been my low point this past year. I’ve had procedure after procedure since December 2018, a mastectomy in May, and have been to three cancer centers. My chest is deeply burned and itching because they are trying to rid my skin of cancer so they’re targeting that hard. I woke up last night with water running from my underarm where they are radiating. With burns, your skin begins to weep. So I got a new otc astringent (Domeboro) to debride and dry out the weepy areas.

I am now on my 24 proton treatment with 15 more to go. My chest is purple in places and my belly is bright red. The field they are hitting with protons is from my neck down to my belly button on left side and even over my sternum towards right breast. Dan thinks this may be one of the reasons I’ve having GI distress—because they are hitting the top of my gut. I got 40th chemo and 55th radiation (combined radiation and protons) today. My poor skin. Fortunately skin cells turn over fast! Nurses did give me extra water and Benedryl in my IV today.

So much for not sunbathing for 40 years—to protect my skin.

I have learned several good lessons through the past two weeks as I’ve struggled to feel better:

I can go with out coffee in the morning (coffee irritates stomach)

Wine is bad for my stomach but I can tolerate beer,

Blander foods stay on my stomach better.

Silvadene is good for burns on skin (prescription)

Aquaphor is good for radiation

Aloe plants are good to rub on burns but not as efficient as other meds

Domeboro is a good compress to put on radiated weeping skin to dry it out.

liquids are my fried.

Benadryl or claritin are also my friends for itching. .

Hydro-cortisone is also good to use. I have otc and higher strength prescription.

My hair is coming back in as fuzz.

And take it from me, if I can get through this craziness, you can too. It will all be a distant memory someday. Right now my fever spiked to 101.6 but I do not want to go to er. I’m taking Tylenol. I was shaking like a wet dog and Dan put blankets on me.

Hope I’m better by morning.

My friends and family always, always make things better so value relationships! Thank you all.