My New Infusion Center

In an email to a judicial friend up nort’ (as we Wisconsinites say) I included my observation that the nurses at the Infusion Center rarely if ever smiled or talked to us during the time we received our chemo. I didn’t say more than that to him, and suffice to say here that I perceived a lack of compassion and interest by the nurses in us patients, including how we felt or what we thought. The atmosphere lacked vitality. 

The result for me was a sense of being discounted, a diminishment of my personhood, a subtle dehumanization to the point where I felt I was simply a body with a medi-port to which an IV could be attached.

A few argue that the nurses need to use distance as a defense mechanism, but from what? This is not a hospice or an in-patient hospital unit. We are not dying. This is a chemo clinic. We are there to get better. To live!

My friend responded that he was “incensed’’ to hear this about the nurses. His response had a transformative effect on me. He seemed to feel the anger that I couldn’t rouse from within myself. It was as though he rode in as my knight in shining armor. So I let him take me up on his horse and we galloped off to a different Infusion Center which just happens to be less than two miles from my home. (I hadn’t noticed it before since I wasn’t in the market for one.) I asked my oncologist to transfer my treatments to the closer clinic. Done.

Having Round 3 of my chemo at the new center has been better than having a plastic pumpkin filled with my favorite Halloween candy bars.

It is lighter colored with windows from floor to nearly the ceiling. The view is lovely. There are closely planted trees, each one’s leaves turning its own color – yellow, deep purplish red, bright red, orange. Birds fly in to nibble from the feeders. And off in the distance a copse of old trees reminds me of my childhood: Colburn Park, just one block from home, where we spent our summer mornings, afternoons and evenings.

But best of all at my new Infusion Center are the nurses.

They look at me when they talk to me or ask me questions.

They know the chemo drugs inside and out.

There is a nursing station but they understand that this is where they chart and that we patients are of primary importance.

They apologized on the first day that they had been too busy to come over sooner just to talk and get to know me and my husband.

Despite it being a smaller center, they work harder and more efficiently.

They seem to like their work and – gadzooks – us!

They carry out their work as though their philosophy is to make everything as easy and as comfortable as possible for us, that we are the ones who are suffering and need our energy for healing, and they are there to help us in every way they can.

These nurses are genuine healers who maintain an authentic healing space. They do all nurses proud.

© Jean DiMotto, 2011    Website: www.jeandimotto.com  

Depression Central a/k/a The Devil's in the Decadron

Last week my college friend in Virginia who has been looking after me from a distance sent me an article by a food critic recounting his two-year journey with a virulent brain cancer. The author's comments about the wildly varying, powerful emotional effects of Decadron hit home. 

Decadron is a fiercely strong steroid given to lessen the side effects of chemo, especially the nausea. It was responsible for my feeling completely wacko after my first round of chemo. (See, “So What’s Chemo Like, Anyway?” September 24, 2011.)

My oncologist reduced the dose by one-third for my second round of chemo. Perfect. Completely forgetting that steroids need to be tapered down over several days, I quickly stopped taking it orally as well – and just as quickly sank to the bottom of a lake in Decadron withdrawal. 

At supper I said such things to my family as, “If I was gone, you’d miss me but it wouldn’t last too long.” Everyone’s ears perked up but they camouflaged their alarm and instead checked in on me throughout the evening and gave me heartfelt hugs.  That’s what helped me become aware of how deeply depressed I had become. I had hit my nadir. 

What to do about a drug-induced emotional state? I learned about ten years ago that while a medication may intensify an emotional response, a mood or the vividness of dreams, they are nonetheless my responses, moods and dreams. So while it is true that the devilish Decadron is partly to blame, the spiritual path of growth requires me to work through whatever has presented itself under the medication's influence.

After a good bit of pondering, I first concluded that I had nothing to look forward to for months but more chemo with increasingly pronounced side effects followed by major surgery with an extensive recovery period. "It is a peculiarity of man that he can only live by looking to the future...." Victor E. Frankl, Man’s Search for Meaning, p. 73.

To solve that part of the problem, I asked my husband if he was interested in an early December (before the holiday rates kick in) trip to Vermont, one of my favorite places.  It would be a chance to relax together, linger over candlelit dinners, shop in little boutiques and celebrate the end of my chemo. He jumped at the suggestion. We booked using the airfare from my canceled trip to Spain. 

Still, one doesn’t sink so low merely because there is no vacation in sight. What else did I need to wrestle with at deeper inner levels? More pondering that night and then hashing it out with a skilled doctor (so many doctors, so little time) with whom, synchronistically, I had an appointment the very next day. What I discovered is that at age sixty I was still living every single day under my long-deceased father’s “shoulds” and “oughts” together with the inevitable, inescapable guilt. The enduring influence of parents! 

“Are you able to just be?” my doctor asked. Her question brought me up short. It exactly identified the nub of my existential quandary. Must I do and achieve to feel worthwhile, or is it okay to revel in just being? Whoa, it sounds almost – well, sinful.

I also heard it, however, as a call to once again leave behind what doesn’t work anymore and become even more mature, to climb a step higher on the spiral of Jacob’s ladder.

I suppose I owe Decadron a nod for plunging me down so far down that I had to find new strength to surge back up again.  But my two-year-old self sometimes prefers to stamp her foot and say to Daddy Decadron, “You big meanie!  I hate you!” 

Oops, what was that again about maturity?    

© Jean DiMotto, 2011      Website: www.jeandimotto.com

Young Intimacy, Old Intimacy

On a recent sunny morning, my son-in-law sat in a chair on one side of the small, square kitchen table. His new wife sat kitty corner from him on an adjoining side. He turned his chair to face hers, took her hands in his and focused his clear hazel eyes exclusively on her big brown eyes with those lovely long lashes. He created an intimacy so sweet, so ardent and so real that I lowered my eyes, as one does when in the presence of luminous beings. I began noiselessly to edge out of the room, but not quickly enough. In his endearing Australian lilt I overheard him declare gently to her, “I will not participate in the Polar Plunge into Lake Michigan on New Year’s Day.”

My husband came home Monday night thoroughly worn out from a challenging day at work followed by an evening obligation. He arrived as I was finishing the second load of laundry. This is an ongoing if obnoxious daily ritual: two loads of laundry occasioned by my urinary incontinence. No matter what I have done to prevent this, every morning for at least a month I have awoken with the sheets, my nightwear and two towels meant to absorb the outflow soaked through. I was too tired – whoa, not a strong enough word – utterly exhausted – to begin the laundry before evening. 

I carried the warm sheets from the dryer up the stairs to the bedroom. Then we took turns trying to get the fitted sheet onto the bed. Two people running on empty struggling to literally figure out which end was up. Despite our 0-to-60-in-3-seconds frustration, we said nothing lest we bark at each other, and we did not make eye contact lest we glare. Finally we accomplished it. Then we draped our weary arms around each other and our lips found each other’s, as they have for 40 years. It was tender affirmation that our restraint, our kindness and our respect in those trying minutes were intimacy of the most valiant kind

© Jean DiMotto, 2011   Website: www.jeandimotto.com  

Leaves Fall Down, Hair Falls Out

On Tuesday I needed to go into work to take care of some of my cases that only I can handle. I start the day with a lovely hot shower, first shampooing my hair then coating it in a luxurious (yep, expensive) conditioner that my sister’s friend said helped prevent her hair loss when she had chemo. As I remove my hand from my hair, there are quite a few stands of hair on it. What?? I thought this wasn’t supposed to happen until after my second round of chemo which doesn’t begin until the next day.

Sure enough, there is more. Quite a bit. I am afraid to towel off my head after the shower and instead brush it right away. Scads of hair cling to the brush. I am afraid to see how I now look, but you can’t tell really. It is more of a thinning of my hair making my part a little wider, rather than clumps or handfuls leaving vacant areas of scalp. Whew! I was supposed to go wig shopping on Friday ahead of all this, but didn’t because, as the song goes, I got so damned depressed.

I make it through the day at work and in time for an appointment at a very caring and dignified little shop with a hairdresser who has had breast cancer. The first wig works.  Now to get the right color. We sit in the natural light of the sun by a large window to match my hair to sample hair colors. I let John and the hairdresser decide because they can see more of my hair than I can. We order the wig for pick-up in a few days. Meanwhile I get a head scarf that sets off the unusual color of my irises: a blue inner rim surrounded by a green rim.

The next day during chemo, I let my fingers glide through my hair and ten strands come out. Again; 30 this time. Then 25, then 20, and on and on it goes. I saw “50/50” over the weekend (a good movie: good acting, good story, good balance of humor with heart). But the guy did not look better with a shaved head. I cannot go that radical. I can’t think why John and Anne can’t cut off some of my hair tonight at home.  Then again, I can think why and decide I deserve a professional haircut because, as the commercial goes, I’m worth it.

My hairdresser has broken her arm so I am assigned to a young woman about Anne’s age (mid-20s). I tell her I have cancer and my hair has begun falling out, and would she please cut all my hair down to about one inch from my scalp. She says that she wants to make it look feminine. Good luck with that, I think.

She massages my head with oil and I am grateful that she even wants to touch it. She washes it thoroughly and gently. She coats it in luxurious conditioner (yep, expensive) and covers my head with a hot towel. Then she rinses my hair, carefully towels it partially dry and begins to work her magic. 

My medi-port shows partly through my salon gown and I say what it is. I'm about to explain it to her when she says, “Oh, I know all about those ports. My grandmother has one.” I immediately age ten years.

She finishes the cut, blows my hair dry, primps it, and gives me the mirror. I cannot believe what a cute and practical cut she has given me, all the time treating me with respect and dignity. I tip her well.

John is delighted with it. Anne approves of it as well. On Tuesday, Tom finally was allowed into America on his immigrant spousal visa, and came home to his wife and to America. He and Anne are living with us until they can get on their feet financially. When he sees me this evening, he says my cut is “becoming.” I love my son-in-law.

 

And here’s the best part: My hair has stopped falling out; just a strand or two here and there. Who'd have thought that even chemo can be killed with kindness!

© Jean DiMotto, 2011    Website: www.jeandimotto.com