Part Fifty-Five: Week Three

            As always, the front desk personnel greet me with a smile.  (It only took a couple days before they knew me by name.)  Their friendly banter makes me feel welcomed.  The waiting room has been extra crowded lately, but no matter how busy it gets, they always smile and personally greet each person checking in.  It’s even getting so that I recognize some of the patients.

            There is the man in the wheelchair accompanied by his wife.  He is gregarious enough that I’ve heard his conversations from across the room.  This I know:  he is being treated for brain cancer, and he once lived in San Francisco.  Every day he is balder than the day before. 

            I meet the cheerful grandma, who has very short, curly hair, near the end of her treatments when she and her three-year-old granddaughter plunk down in the chairs next to me.   Across from us are two older women, possibly related; I can’t tell.  The one getting treatment has the sallow skin of someone who has very recently been on chemotherapy.  Her bald head has the very beginnings of hair growing back.  Her anger and depression hang over her countenance like a cloud.  She tells us that she stopped her chemo after only a few sessions because it made her too sick, and now she is starting radiation therapy.

            Across the crowded waiting room I see a white-haired gentleman with an open Bible on his lap.  He is holding his glasses in one hand as he wipes his eyes with the other.  I imagine that his wife is in for one of the imaging tests that are part of the work-up before cancer treatment begins.

            One afternoon as I enter the waiting area, I smell something pungent that I cannot place.  A few minutes after I sit down, still puzzling over the odor, a woman’s name is called.  As she walks past, the smell grows stronger, and then I place it:  the ammonia scent of a too-full kitty litter box.  I wonder how many cats she has and how bad her living conditions must be for her to carry that odor on her clothing.

            I myself am feeling rather low that day, but a pick-me-up is waiting for me down the hall.   From the changing room I enter the radiation room, my hospital gown clutched about me and the hard slab of a narrow table waiting for me to lie down upon it.  The technician greets me with his best maître d' voice, “Table for one?”

            “Yes, thank you,” I reply with a laugh.  He has just made my day.

Part Fifty-Four: Easy-Peasy

            “Easy-peasy” popped into my mind last week.  I had to look it up to make sure it was a bona fide word.  Sure enough, it is the British equivalent to “easy as pie.”  What remains a mystery is why I’m familiar with it, so I’ll blame that on my mother, who had an incredible vocabulary even when she was in the throes of Alzheimer’s.

            Question: what does “easy-peasy” have to do with breast cancer?  Answer: the early days of radiation therapy before the side effects set in.  These are the easy-peasy days.

            Let me walk you through a radiation treatment.  A technician calls my name, and we walk back to a dressing room where I undress from the waist up and put on a hospital gown.  I lock my belongings in a handy cabinet that even has a special holder for my glasses.  The tech escorts me across the hall to the CT/radiation room and asks if I want a warmed blanket.  I never refuse.  I lie down on a narrow, hard table.  The technician drapes that lovely blanket over my legs, I hold my arms straight up, and she removes my gown.  I position my head in the bean bag mold that was created at my first appointment.  There is no squish to the mold now; it feels like a form-fitting stone pillow for my neck, head, and arms, which are draped over my head.

            Then follows my “bag of potatoes” time, in which I lie limp and still as the two technicians position my body.  They use the sheet underneath me to pull and turn and slide me here and there until my tattoos—located on sternum, stomach, and sides—line up just right.  They remind me to lie very still, and then they leave the room.  Pretty soon the machine hums to life, and I slide into its open circle.  After a good five minutes or so, it slides me back out where I wait a few more minutes, utterly still and my arms starting to cramp.  Then it slides me back in the circle for maybe ten minutes and zaps me with the invisible radiation beam.  As the machine pops me back out, a technician returns to help me off the table. 

            I walk back across the hall, get dressed, check out at the front desk, and am in my car ready to drive home within thirty minutes of my arrival time.

            So, yes, the treatment is easy-peasy.  The drive to and from is not, but I am brushing up on my city driving skills, including evening rush-hour traffic this week.  Starting on Tuesday, my regular treatment time will be 1:45 p.m.  Now that will be a piece of cake.

Part Fifty-Three: While I Was Waiting

            While I was waiting for the scheduling of my radiation treatments, Congress took the first step towards repealing the Affordable Care Act.

            While I was still waiting for the scheduling of my radiation treatments, President Donald Trump signed an executive order gutting the Affordable Care Act. 

            And then the phone rang and my radiation treatments were scheduled:  five days a week, starting January 23 and ending March 7.

            And then I read through my BlueCross BlueShield policy book, which came in the mail today, and I was reminded that the only reason I have such excellent health insurance is due to the Affordable Care Act.  Were it not for the ACA, my monthly premium would be 77% of my monthly income.         

Now I’m wondering how long it will be before I lose the tax subsidy that makes my health insurance affordable.  Because when that happens, I’ll be uninsured and perhaps uninsurable due to my pesky pre-existing medical conditions:  breast cancer, fibromyalgia, high blood pressure, and pre-diabetes.

While I’m waiting for the federal government to kill off the Affordable Care Act, I will gladly drive to Tulsa for my radiation therapy.  I will figure out which of my eight prescription medications I will be able to afford to take without health insurance.  Oops, there is going to be a ninth pill soon due to the radiation:  thyroid. 

Naturally, the whole time I am waiting, I will be praying.  Not just for myself but for all Americans who might lose their health insurance.

Part Fifty-Two: Beanbags and Ink

            “Attack of the beanbag” is what I told Dr. Nguyen I would write, but on further consideration, “attack” is not the right word.

            As Kristin, the technician, adjusted my head and arms Monday morning, I wondered about the scrunchy stuff around them.  It seemed to be a man-made material that could be squished and shaped.  She moved me and it around, finally ending up with my arms sort of draped over the top of my head, which was turned as far as it could go to the left.  As she got my various parts adjusted, she pressed a button (I assume) and the machine moved to hold the stuff tight against me.  If I remember correctly, that was the point where she put stickers on my chest and ran the brief CT scan.  Then she left to get Dr. Nguyen.

            A good ten minutes passed.  I couldn’t see much other than the ceiling, but I heard a door open on the left, and with my peripheral vision I saw two persons enter the room.  Dr. Nguyen introduced a third-year resident.   I couldn’t really see him, but I said, “Nice to meet you” anyway.  After she quickly drew lines on me with a permanent marker, she said, “That looks like an uncomfortable position.”  I had to agree.

            She went to work with the technician, who had returned from my right, creating a lump with the beanbag-like material to support my head, neck, and repositioned arms.  Once they finished, Dr. Nguyen asked how it felt.  “Like a vise gripping my head,” I answered, so she released the machine’s tension a little. 

            After Dr. Nguyen and the resident left, Kristin told me it was tattoo time.  Just five tiny burning stings—one on my left side and the other four on the right—and she was done. 

            Next week, after Dr. Nguyen analyzes the imaging and prepares my treatment plan, I’ll get the call to set up my radiation therapy appointments.  I’ll be precisely positioned according to my marks and the machine.  I’m not quite sure how they will do that.  I’ve only found four of the five tattoos, and some of the markings washed down the drain with my first shower. 

            But, fortunately, I’m not the professional here.  All I have to do is let the professionals check my dots and move me around until everything is lined up perfectly for the radiation beam and then lie perfectly still for ten minutes while I’m being zapped.  My lower back—exactly where my vertebrae are bone-on-bone at L3-4—bears the brunt of the pressure from lying flat on a hard slab.   Maybe the back pain will keep me from focusing on the pain from my arthritic shoulders beanbagged above my head.

Part Fifty-One: Another Beginning

            The call came Friday afternoon two blocks from home.  Stopped for a school bus, I answered my cellphone: “Hello, this is Janis.”

            “Hi, Janis; this is Sarah from Dr. Nguyen’s office.  We have a slot open Monday for your CT simulation.  Let me ask, just to be sure: you want your treatment in Tulsa, right?”

            “Yes,” I answered, sealing my fate.  But I’ve thought long and hard about this decision.  And prayed, too, of course.  What I come up with is that for six weeks of my life I can drive to Tulsa five days a week to have the doctor I really like, the one who explains everything so thoroughly and who knows her stuff so well.  I’ll only actually see her once a week, but the drive is still worth that to me.

            Thus, on Monday, January 9, I will be at OCSRI-Tulsa for my 11 a.m. CT simulation and tattoos (tiny dots for radiation reference points).  I will do my best to follow Dr. Nguyen’s previous advice to pretend I am a sack of potatoes.  In other words, I must completely relax while the technician is adjusting my position, which must be precisely the same for every treatment that follows. 

            I imagine that I will learn at least a couple things within the next two months:  getting comfortable with Tulsa traffic and finding the secret to complete relaxation lying half-naked on a hard surface with my right arm up over my head.  I also plan to get well acquainted with the drive home through Owasso, where I can eat at Panera’s and grocery shop at Sprouts.  I doubt I will buy any sacks of potatoes, though.

Part Fifty: I Did It

            On Tuesday, I did it:  I drove to Tulsa by myself to get my BiPAP for sleep apnea.

            On Wednesday, I did it:  after spending a fun morning in downtown Pawhuska at the Pioneer Mercantile and a few smaller shops with friend Mona, I ate at Murphy’s for the first time, though I did not try their specialty, a hot hamburger.  For all my non-Bartian friends out there, a hot hamburger is a hamburger covered with fries and smothered with gravy.  (And a Bartian is a person who lives in Bartlesville.)

On Thursday, I did it:  I picked up my flute for the first time since last spring.  I played for less than five minutes and sounded awful, but it is a beginning.

These, perhaps, are not world-class exciting events, but they were important to me.  I needed to prove to myself that I can drive to big city Tulsa by myself since I may be doing precisely that five days a week for radiation therapy.  Plus, getting my BiPAP is exciting.  In case you don’t know, a BiPAP is like a CPAP, except that it delivers two different air pressures: one for inhalation and one for exhalation.  What that means for me is that now I breathe all night, which is way better for my health than stopping breathing 26 times in a single hour without even knowing it.

Going to the Pioneer Mercantile was a big deal because the Pioneer Mercantile is a new business established by Pawhuska’s own famous cookbook author, Ree Drummond.  I love looking at all kinds of pretty stuff I will never buy; plus, the cheese Danish I had upstairs in the bakery was awfully good.  And the other big deal about the day was that this was the first time Mona and I did something just for fun that was not tied to a medical appointment.

And playing my flute even for a few minutes reassured me that I will gradually get back to playing my flute again.  I’ve been so wrung out physically and emotionally through this long siege of cancer treatment that it was not an option.

I need a little bit of fun and lots of reminders that God will see me through radiation therapy.  It was easy once I was through with chemotherapy and surgery to “forget” about radiation.  I find that I am very tired of being a cancer patient—I guess I’m a patient with diminishing patience.  I want to be done, but I am realizing that when it comes to cancer, you are never completely done.  But I want to get to the place where cancer does not dominate my life.

Then I can say “I did it!” and be mostly done.

Part Forty-Nine: The Facts

            It was not what I wanted to hear. 

            I met my radiation oncologist Tuesday and suddenly things got real.  Too real.  How could I have forgotten those key details from my MRI last June?

            Besides the tumor itself, the MRI showed a few suspicious axillary lymph nodes plus a malignant internal mammary lymph node.  Dr. Nguyen reminded me of those details today and explained what they meant. 

            Axillary lymph nodes are in the armpit area.  Internal mammary lymph nodes are located underneath the ribs along the sternum.  The “complete pathological response,” i.e., “the cancer is gone” refers only to what was removed in surgery: the tumor area and single sentinel lymph node.  Radiation will not, as I supposed, only be directed to the surgical areas.  It will include the upper right quadrant of my chest to cover the axillary and internal mammary lymph nodes.  We surely do not want any stray cancer cells to be hanging out or spreading from there.

            Naturally, this more extensive radiation area means additional possible long-term effects such as an increased risk of lymphedema and the possibility of a small area of lung damage. 

            There are a few steps before radiation therapy begins.  I’ll have a CT scan and get tiny dot-sized tattoos that will serve as markers for my treatments.  Then Dr. Nguyen will plan the radiation therapy based on her analysis of the CT scan and my previous MRIs.  I will have 33 treatments:  at five times a week, that comes out to 6 ½ weeks. 

            About the time I finish radiation, it will be only a few weeks before I start quarterly visits to OCSRI-Tulsa to have bloodwork done and an appointment with my medical oncologist, Dr. Moussa.  (My port stays in for at least two years because 90% of triple negative breast cancer recurrences happen within two years of the initial diagnosis.)  There are bound to be follow-up appointments with my radiation oncologist as well. 

            Add to those appointments the ones for my other medical issues—high blood pressure, diabetes, degenerative disc disease, sleep apnea, and fibromyalgia.  My hope is that as the months and years roll by, there will be more news I want to hear than not.