When It Rains, It Pours

Or perhaps, when it snows it pours since we have a partial ground covering of snow today (“It’s beginning to look a bit like Christmas….”).  My Aussie son-in-law was thrilled to see it.

So much can happen in 24 hours. In one 24-hour period this week – just as my hair was beginning to grow back (I note with chagrin that the hair on my chinny chin chin raced back at a pace far exceeding that on my head and legs), just when I was beginning to feel more energetic, just when I abandoned my daily attire of bed clothing (to remind myself to reserve my energy for healing) and began wearing regular clothing – just then I was given three new diagnoses. My mother told me life wasn’t fair, but really.

The path to discovery started when one of my crack surgical team members did two scopes. The first was an esophagogastroduodenoscopy.  (My daughter remarked, “Holy Mother of Mercy, that is a mouthful.” Myself, I like a good 12-syllable word.)

It means that under conscious sedation with fentanyl (a narcotic pain reliever) as well as versed (a sedative and amnesic which – thankfully – makes one sleep and forget), a lighted tube (scope) is inserted through the mouth down the esophagus into the stomach right up to the duodenum (the beginning of the small intestine). The entire upper gastrointestinal (GI) tract is thus visualized.

This scope showed that I have a bleeding ulcer in my upper stomach near my esophagus. A bleeding ulcer! I have felt nothing. I drink strong coffee, albeit with cream, and have felt nothing. Or, with my luck of late, I felt it and mistook it for hunger pangs and ate. L 

Never having had this scope before, I don’t know how long the ulcer has been there.  But I suspect it is related to the muscular steroid Decadron that I received with each of my twelve chemo infusions and for a few days afterwards in pill form. And did I mention stress?

Next the colonoscopy was done. This involved the insertion of a larger scope in the rectum up through the large intestine to the ileocecal juncture, the joinder intersection between the large and small intestines. This scope showed that I had a large polyp near my bottom end. Honestly, how much more can be wrong with my body?

The surgeon believed the polyp to be non-malignant. This is corroborated by it not showing up on the PET scan in early September because a PET scan only shows “hot spots” – areas of increased metabolic activity (e.g., cancer). We’ll know for sure when the pathology report comes back.

Then I went in for a sleep study at a sleep medicine clinic. I stayed overnight in a lovely, sedate room done in hushed tones of blue. The technician fastened about two dozen electrodes with attached cords to my head and face and a few more to my chest and legs. When I moved my head I felt and sounded as though I had beaded strands of hair. For some reason I felt young again.

Then I laid me down to sleep and within a couple of hours the tech woke me up. This is because she had tracked at least 20 episodes of apnea (not breathing) in just one hour. Good gravy, that is lot of not breathing going on. 

What causes the apnea is my tongue lolling back against my throat. This closes off the airway between my mouth or nose and my lungs, and prevents my lungs from getting air (an apnea episode). This causes me to wake up just enough to take a nice, loud breath, resulting in major-league snoring, baby! (I am considering making a CD of my scary snoring sounds and selling it during the month of October.) 

This cycle goes on at least twenty times an hour! That’s an average of once every three minutes. No wonder I take so many naps – I am not really sleeping during most of the night.

So the tech hooked me up to a CPAP machine with a mask over my nose and mouth that pushes in humidified air with pressure. The pressured air stream competes with the tongue lolling and the pressured air wins. After that I slept for the better part of four hours straight and woke up – are you ready? – refreshed!

Thus my third new diagnosis: sleep apnea, a condition shared by ten percent of the population.  

So now I carry more diagnoses than Carter's got liver pills. Don't be jealous that I am way ahead on this score.

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

Chemotherapy Remembrances

These past few days would have been my chemotherapy treatment days if I were still receiving it, and I found myself reminiscing about it. Several vignettes came to mind.

The senior nurse at my new infusion center who gently and matter of factly counseled that this was a time to be kind to myself.

The young nurse at my first infusion center who was injecting the diuretic Lasix directly into my IV line saying it would “tap” my kidneys.

The 80-year-old man at that center who had tumors in his liver, lung and brain. He was the gregarious, erstwhile owner of an insurance agency and would tell his life story to anyone who would listen but loudly enough so most of us heard it, repeatedly. He was the only patient who had the same chemo recipe as I did, so we were there for the same five hours and usually headed for one of the two restrooms at the same time – about 15 minutes after the Lasix “tapped” our kidneys.

A middle-aged woman at that center told me she had breast cancer and already had undergone surgery and radiation therapy. She said she cried like a baby when she realized she could not return to work in September as an art teacher for all grades in an elementary school because, given her compromised immune system, the risk of getting sick from exposure to the kids’ ubiquitous germs was too great.

A woman with lung cancer referred to one of her chemo drugs as “Cis-poison” (Cisplatin). Some breast cancer patients refer to Adriamycin, a clear red chemo agent, as “Red Devil.” But a young pathologist chose to call it “Red Sunshine” (also the title of her 2011 book) to reflect her positive attitude toward treatment.

A woman at my new infusion center told me she had lung cancer. Asked how many more treatments she had left, she responded, “This better be the last one!” Later, after a new bag of IV fluid was hung, she wheeled her IV stand out the back door and smoked a cigarette.

A couple came together to my new infusion center. He was a Vietnam veteran, and telling me that was enough to briefly bring those memories front and center. He was a large man who reminded me of a retired farmer. She looked like a pixie. He confided one day that she was “just skin and bones.” She slept during her chemo infusions. He sat next to her the entire time, no book or magazine, just his hands and his thoughts. “They also serve who only stand and wait.”  (On His Blindness, John Milton)

P.S. My high school friend’s energetic, I’ve-got-so-much-living-in-me-yet sister: http://www.pantagraph.com/lifestyles/health-med-fit/cancer-patient-knits-away-through-chemo-treatment/article_bc404a3e-21e9-11e1-8555-0019bb2963f4.html

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

A Tale of Two More Surgeons

A man who reads my blog emailed me (jeandimotto@gmail.com) naming the reconstruction surgeon at the Medical College about whom I'd written on November 20^th.  He recognized him from the surgeon’s lack of respectful and compassionate interaction with him and his wife as well as the computer screen cuing him to convey all the “informed consent” information.

I have heard from women who told me they guffawed with other women about Dr. Your Vagina is the New Urethra or were deeply dismayed that someone like him exists in this day and age.

Meanwhile, my husband and I met with another Medical College physician who would be the one to remove my bladder (not one of the two who do the reconstruction). He had read my records and respectfully listened to me and my husband, clarified information, answered our questions and offered his opinions about my surgical options for a new bladder (the neo-bladder would not be an option because of my incontinence; he has seen good results with the Indiana pouch).

I then asked, “Assuming I have the surgery done here, who would do the reconstruction part?” Why, Dr. Your Vagina is the New Urethra, of course. Considering how obviously we had expressed to him our utter dissatisfaction with that surgeon, this was a remarkable answer. In fact, a deal breaker. And it belied his next, practiced, glib statements that he regards each of the two reconstruction surgeons equally and has no preference for one over the other.

What surgeons like these two at the Medical College fail to understand is that many patients are not looking for just a skilled surgeon. They also want one who is a good doctor. A good technician does not a good doctor make. A surgeon who cannot relate respectfully to a patient as a mature human being is going to leave that icky attitude all over the patient during the surgery. I know. It happened to me with the surgeon who placed the original mesh in my abdomen. There is a gulf separating him from my first surgeon who was both a great surgeon and a great doctor, as well as a gulf separating the kind of healing I experienced after each of those surgeries.

Journeying on, we next met with the surgeon whom my urologist wants as part of the team who would operate with her. (So many doctors, so little time.) 

His assistant scheduled a full hour for the consult. After shaking both of our hands, he touched my hand or arm periodically during the consult. He was energetic, animated, sat in close proximity to us and made eye contact with us throughout the consult. He himself has had two abdominal surgeries, so he knows the experience of being a patient.

He is one of about 100 surgeons in the U.S. whose skill set is dealing with complicated abdominal surgeries where the risk of bowel injury is higher than normal and where the abdomen needs reconstruction. 

He talked about my current mesh, and after a physical examination told me it needs to be removed both because it is no longer functional and also because of the high risk of infection if it is left in after this surgery. He asked permission to remove my gallbladder (with its gallstones) as long as my abdomen will be open and the mesh replaced afterwards. He indicated that he will use a new and improved quality of mesh.  

It was easy to like and respect him as both skilled surgeon and good doctor.  

And so I chose my urologist, Dr. Chesrow; her partner, Dr. Wood; and this surgeon, Dr. Armstrong; as my surgical team. Each of them is affiliated with Aurora Medical System.

I cannot describe my relief and sense of peace not just with finalizing my choices but also with putting myself in the hands of these three good surgeons and doctors. 

Surgery is scheduled for the early morning of Monday, January 9, 2012, at Aurora St. Luke’s Medical Center. 

And so I have five weeks to continue recovering from chemo (my nausea even at the end of the second week of my final round is fierce and unrelenting) and begin the pre-op preparation and procedures.

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

Under My Spiritual Umbrella

As a body suffers from illness, as illness wreaks havoc on emotions, what happens to the spirit? And what happened to it in the first place such that disease became a physical reality?

A spirit cannot take care of itself. It needs to be nurtured, gentled, uplifted, strengthened. It is interconnected with all spirit, which pervades all matter, and so it cannot exist in the illusion of separateness. I could not and cannot continue to manage during these months without the spiritual sustenance of family, friends and colleagues, whether here or across the veil.

It comes at any time. Several weeks ago as I began to slip into bed, I “saw” a white cloud about two inches thick spread out on top of the sheet for me. 

I feel it in my husband’s steady breathing and peaceful quietude as he sleeps, and as he holds me when I just can’t take any more. 

I have awoken with a smile and the distinct sense of a hand on my upper arm near my shoulder and know it is my mother. My daughter sacrifices her energy for me when mine is spent. My son-in-law checks several times a day to see if I need anything.

Spiritual sustenance is being "surrounded by dozens of thoughts each day” from my beloved college friend in Baltimore, the various prayer groups who regularly petition for me, the three women who periodically send me cards of encouragement, those who pray daily for me, the aunt who has taken me under her loving wing.

Support came in the healing circle which my friend and former colleague from Marquette’s nursing faculty created for me in her home so that I could receive affirmation and wisdom as I slog through the low, muddy ground. This circle was joined by friends of my husband’s family in North Carolina who together prayed aloud for me during that same time.

Every word of encouragement given directly, through John, through cyberspace or the mail helps to keep me afloat and the water warm. And I need every ounce, every gram, of this thoughtfulness because it is a long and bumpy journey, not least negotiating the health care system itself.

Now the second question: What happened to my spirit such that cancer became a physical reality in me?

My spiritual umbrella is large with a variety of transcendent beliefs existing harmoniously under its protective halo. One belief is that illness is not solely physical but also a spiritual manifestation. Another is that trauma suffered by an ancestor can pass down the generations until healed.

I can describe a peach as juicy. I can describe it as fuzzy (at least the ones I ate in my youth). I can describe it as sweet.  Each is accurate. 

I can describe my cancer physically as limited disease small cell cancer arising in my bladder. But how do I describe my cancer spiritually? I have not been able to identify this in contemplation. I needed someone who could describe my illness to me in spiritual terms so I could heal at that level as well. I chose a shamanic healer, Myron Eshowsky of Madison, Wisconsin, an internationally renowned trauma healer and author of Peace with Cancer (2009).

Both physically and spiritually cancer is an unhealed wound. With his spirit guides, Myron described my cancer as generational, related to the unhealed trauma of an ancestor who was raped and subsequently banished. (Who can argue but that this is the ultimate injustice – being banished because you were the victim of a brutal criminal act?) Have I suffered banishment in my own life, he asked. Yes, I suddenly realized. Four banishments immediately leapt to mind. 

Myron removed the spirit of my cancer, sang its song, then sang a healing song to it and took it into peace. I have work to do to provide a spiritual safe place for my ancestors now, which I gladly undertake.

But this did not completely obviate my suffering around banishment. I wept for myself that I suffered banishments through no fault of my own. I wept the pain of banishment for all my ancestors who were affected by it. 

Then I wept in a self pity that I was the one who was asked to suffer it for my ancestors. In the midst of such human tears I remembered the garden in Gethsemane and allowed a greater Will to guide my own. I became grateful that I could be the one to heal those who have come before me and those who will come after me. A Thanksgiving attitude of gratitude.

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

A Tale of Two Surgeons

I finished my chemotherapy (YES!!!) last Thursday and am bearing with the unpleasant sequelae for one more week. 

But no time to waste. It is time to get my bladder, the source organ of my cancer, removed. The exact extent of the operation is unknown because there are three options for replacing the bladder from which to choose. 

I followed my urologist’s advice about feeling free to seek a second opinion.  After research, it appeared that my two most reasonable options are Aurora Medical System (because my urologist and all my other doctors are there) or Medical College of Wisconsin. 

The first appointment my husband and I had was with one of the two reconstruction urologists at the Medical College. He has been there for ten years.

He began by naming the first option. The name went in one ear and out the other because he immediately followed with, “This option means you will have to catheterize your vagina.” “My vagina?!” I exclaimed. “Well, down there,” he said, opening his legs and pointing at his groin area. “There are actually two openings there but one is just a little (showing about one and one half inches with his thumb and finger) further up. It’s actually called the urethra.”

I am a woman. Did he really think I don’t know my own anatomy? Even if he had such a ridiculous thought, why would he explicitly mislead and so profoundly patronize a patient? In all events, and for reasons I don't recall him articulating, he decided this option wasn’t the one for me.

He asked about my prior surgeries. I of course had detailed these in the multi-paged forms I was required to complete before coming to this appointment. But I reiterated the salient ones: two abdominal surgeries, the second to place a mesh because the original incision herniated. He said that made my case complicated and put me at higher risk.

The second bladder option is the urinary equivalent of a colostomy. A short conduit is created from the ureters (which carry urine down from the kidneys) out onto the skin where the urine would dribble through an “appliance” attached to the skin and into an external pouch. 

He decided this probably was not an option for me either because he believed it would be hard to find a flat place on my abdomen for the appliance. He said this while looking disdainfully at my abdomen, swollen with chemo-related, steroid-induced weight gain.  But, he added, “I’ve operated on people bigger than you.” (Thanks, pal.) Would it help to delay the surgery so I can lose some of this weight now that my chemo is ending?  Ask the cancer guys, he responded.

He believed the best option would be the most complicated: the creation of an “Indiana pouch.” Although this was the option I was most interested in hearing about, our attention spans were waning at this point. The surgeon had his crib sheet of information displayed on the computer screen so he was constantly cued to convey all of it to us.  But it made it challenging to interject our questions and absorb all that was being conveyed.

 

The moment we left I turned to my husband and said, “I will not let that man touch me.” He agreed wholeheartedly.

Two days later we met with my Aurora urologist. She said she wants my bladder out as soon as possible. That way, if any of those cancerous small cells actually managed to hide out during chemotherapy, they don’t have a chance to escape!

She has been carefully planning for this surgery. She pulled out a large, blank sheet of white paper and began drawing and explaining.

As to the second option (the short conduit from the ureters out to my skin and into a bag) she saw no impediment to finding a place for the appliance on my abdomen. This is also the medically healthiest option (low risk of infection and other complications).  Nonetheless, my family and I don't cotton to it based on the “ick factor.”

As to the Indiana pouch option, my urologist already had arranged to bring in a superb general surgeon highly reputed for operating safely and skillfully on patients with potential bowel issues. I have this potential because of my two prior abdominal surgeries. 

Suffice to say that after an operation, things inside can adhere together forming scar tissue which, in a subsequent surgery, can then tear away from unscarred tissue it had attached to - like bowels - which injures the bowels. During the bladder surgery, my bowels need to be moved out of the way after the mesh is dealt with. So this surgeon will begin the surgery, prepare the way for the other two surgeons including moving the bowels aside safely, stay on-site throughout the entire surgery so he can be called back in immediately if needed, and be the one who “closes” me up. My urologist and her partner will create the Indiana pouch.

She further has planned for an approximately five-day recovery in ICU before moving me to a general post-op unit. She listened intently when I told her how quickly I metabolize pain medicine during surgery as well as which pain medicines work and which don’t work for me postoperatively. She made notes of this as well as her ideas for dealing with this important issue. (The other surgeon told me to tell that to the anesthesiologist.)

Easy choice: My urologist and her team.

Then the hard news: She and her partner do not do the first option, called a neo-bladder, the one that may require catheterizing through my urethra. This option may turn out to be best if there is a chance a surgeon may not need to go into my abdomen where all those adhesions and bowels are, but instead confine the surgery to the pelvic area below the abdomen. That would reduce the risk of the surgery for me.

Next step, consult with a different Medical College physician who can do a neo-bladder.  Since my urologist wants my bladder out sooner rather than later, she offered that if a surgeon at the Medical College can schedule either surgery (neo-bladder or the Indiana pouch) sooner than she can get surgery scheduled, then I should have the surgery with the Medical College surgeon. (You can understand why I have such faith in my urologist.) Then we will meet again with her as well.

To be continued….

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

To Sleep, Perchance to Dream -

Shakespeare's Hamlet anguished about sleeping and dreaming. Obviously he had devils to deal with but chemotherapy could not have been one of them.

Fatigue and exhaustion are well recognized side effects of chemotherapy. The easiest way to describe my chemo-induced exhaustion is to note that after a three-day round of chemotherapy, I sleep 15-18 hours a day for the next seven days. Yesterday, after having gone to bed at 10 PM, I awoke at 10 AM and went downstairs to make myself a strong mug of coffee. I took it into the living room to enjoy and woke up three hours later in the same chair, the mug half full in my hand. An hour later I took a two-hour nap.

It's no use fighting it; a body needs what a body needs. Perhaps more importantly, a soul needs what a soul needs.

Dreams are a currency of the soul. I facilitate dream groups, where those interested in their dreams come together weekly during fall or late winter (on hold, of course, until fall 2012) to share dreams in order to find the soul-directed meaning for their waking lives. Thus, for someone like me who so deeply values dreams, these lengthy, luxurious periods in which to dream are gifts indeed.

In some long dream sequences I am working things out. I no longer regard what are still daily episodes of weeping as pity parties but rather as times of grief about something I am letting go of. I have found that if I don’t shed the tears, the grief remains. If I let my tears fall, then I move through whatever it is, and rather quickly at that. I have stopped trying to figure out what it is I am leaving behind. Working alone in this level of the unconscious is a journey of trust in my guardians and spirit guides.

In other dreams, those internal spaces I have wept clean are filled with something new. Again, I keep my mind out of it and just receive. Sometimes, I am graced with the presence of white-lighted beings. How can I keep from singing (as the hymn inquires)?

End note: My ayurvedic friend and gardener is a vivid dreamer and avid participant in my dream groups. She dreamt a dream for me early on after my diagnosis: She and a number of women were in her van and I was to drive behind them in my white car. But my car wouldn’t work. So the women got out of the van and raised the hood and tinkered under it to fix things and then my car worked. How can I keep from getting well?

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

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

The Fragility of Emotional Balance

I met with my oncologist Wednesday morning. There is one thing I still don’t understand so I asked: If I have limited disease, locally-confined cancer with a clear PET scan, why am I undergoing chemotherapy? Is it because of the type of cancer – small cell?

Yes, she replied. This cancer is rarely found in the bladder, most often in the lung. Small cell cancer has only two classifications: limited disease or extensive (metastasized) disease, but it is always considered a systemic cancer. This is because the “small cells” are neuro-endocrine carcinoma cells. Embryonically neuro-endocrine cells form into all the glands as well as the neurological system. So it is possible for there to be lots of these microscopic villains hanging around which cannot yet be detected by a PET scan. Thus, chemotherapy to poison them wherever they may be lurking.

For some reason, this information caught me completely off-guard. It brought home to me the seriousness of my cancer. It doesn’t alter the optimistic prognosis one iota. But somehow this more explicit information took the wind out of my emotional sails – again! I was planning to go to work, but I could not get ahold of my tears.

Denial is a nice companion. Then another rock is upturned and I see what is under it.  Smash! Those are my emotions splat all over the place. No physical pain, no nausea.  But the daily bouts of weeping are exhausting.

That is the thing about my condition: it’s the emotions that are the trickiest part. Similar to grief, they surface whenever they feel like it. Unannounced. And they don’t drive away on the freeway. They meander on winding back roads so that regaining even a small measure of emotional balance is elusive. 

Part of it is so many utterly new experiences in the span of just three weeks. Another is the intensity of the experiences. Yet another is the unpredictability of the experiences and the information. And I don’t have cigarettes anymore; I have long viewed smoking as helping me manage my emotions.

I am surprised that I cannot talk about my experiences or emotions with anyone other than my husband. Even with a sister who calls frequently and ends each call with, “OK, honey, love you.” I let her calls go to voice mail and ask John to let her know how much I appreciate her thinking of me but that I just cannot talk about this.

Instead I stay awake late into the night to find the necessary stretch of solitude to come to terms with my emotions, to ponder, to pray, to write. And then I am like a newborn who has her days and nights mixed up. “Oh, Mama, I wish you could hold me and rock me,” the infant cries plaintively.

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

Monday's Pity Party

My Monday pity party went like this: After I actually showered - yay Jean! - I headed off about 1:30 to the oncology clinic to give a urine specimen because I  had burning with urination. My nurse last week said come when you can so I came when I could. Oh horrors, no doctor's order! The receptionist, a woman about my age, said my full name and spelled my last name three times in front of the other patients in the waiting room while on the phone to someone else in the clinic. HIPAA, schmipaa. Finally she got the order.

I took my teeny tiny container into the restroom and opened it, opened the wipe, lowered my pants, used the wipe, let a little urine flow then tried to stop it (right!) and then positioned the teeny tiny container. But Pavlov’s dogs were with me the entire time and so I “peed up a storm:” on the toilet seat, in the toilet, in my adult diaper, on my pants, down my leg, onto my shoes and the floor - everywhere but in the teeny tiny container designed only for men and for skinny young women without bellies who might actually be able to see what they are doing down there. I turned on the faucet for any assistance running water might provide but all the urine was out and Pavlov’s dogs were long gone. 

I began to clean up myself and the room, and to cry. Which apparently cancer patients are not allowed to do if I gauged the receptionist’s response correctly. I thought I had my tears under control but when I came out of the restroom with the empty container I started crying again. I said to the receptionist, “Sometimes having cancer is a real pain in the ass.” She looked at me while glued to her chair three feet away and asked if something was the matter. Should I have said “urethra” instead of “ass?” I don’t know what I replied to her incisive question because by then I was bawling. Fortunately she got the lab woman back, also a woman about my age, who was wonderful, “got it” immediately and said soothing things without patronizing me. She noted that men have it so easy with their apparatus. She gave me a new teeny tiny container and told me to return it when I had an inch of urine in it.

I started to head home but determined that I was not driving all the way there and back, that I was going to park in the lot shared by a nearby coffee cafe and pasta place, drink the pint of water in my car and get this done with. After 45 minutes of no response I figured I’d eat at the pasta place and take in some more liquid - a pint of really tasty lemonade!  

After another 45 minutes I felt an urge - yay! - so I took my bag of goodies which now included a plastic “hat” to put under the toilet seat if needed to catch my errant urine. But I thought if we are looking for bacteria here, urine from the hat will be per se bacterial so maybe I’d do it the intended way. But I couldn’t get the door closed before Pavlov’s dogs raced in and so I had urine in all the same places as at the clinic.  

I didn’t cry this time. Big girls don’t cry. Cancer patients don’t have sudden, unexpected expressions of emotion just because they are urinating everywhere.

I came back to finish my delicious pesto pasta only to find the bottle of lemonade standing in lonely sorrow because they took my pesto to the mass pasta grave.  At least I’d eaten the chicken. But having been toughened by Ms. “Is something the matter?” and motivated by the grieving lemonade, I called attention to my plight and they immediately made me another dish of pesto pasta. Things were on the upswing. I changed tables to a booth nearer the restroom so I had a better chance of beating the Pavlovians. Upswing, schmupswing. The configuration of the booth bench to the booth table was perfect for allowing the pesto to plop right onto my newly washed linen-colored (hmmm, maybe egg-shell white) sweater.

I went home, what was the use.  After three tries and by 5:30 PM and with the help of the hat, I finally provided a worthy sample in the teeny tiny container designed only for men and for skinny young women without bellies who might actually be able to see what they are doing down there. 

Anybody ever thought of a sterile little funnel for women to hold in the general vicinity and aim down into the teeny tiny container? How about the configuration of my husband’s mousse container: two inches across and two inches deep? Doesn’t anybody remember how much easier it was to fill a wide-mouth canning jar than one with a regular-sized opening? Aren’t there any women in these design departments?

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

Autumn Chrysalis

So many friends and family members have been doing things for me. 

Every loving act, email, gift, joke, morsel, card, intention, flower and prayer has reached and enriched me. It is no longer 1 + 1 = 2 but 10 x 10 = 1000s. I not only feel uplifted but spiritually protected as if I am ensconced in a beautiful, etheric, diaphanous chrysalis woven of the very finest strands of white light in an exquisite pattern of holiness so sublime that words cannot describe it.

There is much to celebrate and for which to be grateful:

°       John looks after me in every way, accompanies me to all treatments, does almost all of the housework, makes meals, heats up gift meals, loves me awake and loves me to sleep. To see myself through the eyes of his love is a powerful gift.  “What have I ever done to deserve...?” (Kris Kristofferson)

°       My cigarette smoking (off and on since I was 16) could have resulted in lung cancer, a much worse situation. Instead I have limited-disease bladder cancer (a cancer also associated with smoking) which can be cured.

°       My disfigurement will be limited to the lengthening of my abdominal scar and a little stoma.

°       I have a beautiful autumn day like today: good rain for the flora followed by sun in time for the UW Badger football game.

°       I am down to only one pity party a day.

°       I have figured out how to take my as-needed meds effectively.

°       My lab results this week were great.

°       I only have to have one needle poke a week. 

°       I am increasing the profits of the manufacturer of Depends.

°       My dear son-in-law will be here with us in ten days.



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