December 22, 2006 § 12 Comments
On Monday I took a shower and quickly realized that I won’t be scheduling any bikini waxes in the near future. As promised, the chemotherapy was tackling my excess and not so excess body hair.
Some folks argue that losing your hair in chemotherapy is potentially more traumatic than surgery. I’m not in that camp at the moment. What’s odd to me about the hair loss is the ease at which it just falls out. None of the pubic hair in zipper ouch or elbow on my ponytail yikes. You don’t feel a thing. You lather up and when the time is right you’re holding a handful of the salon floor.
Even if you don’t feel a thing, it doesn’t feel right. This morning I waited in my car for the first salon in the neighborhood to open. At 9am I got buzzed. I didn’t have an appointment. It didn’t matter. Susan brought me to the back of the shop. In minutes I looked like a radical feminist.
While everyone is tremendously enthusiastic about my buzzed head; it’s nice shape and how well I pull off bald. I’ve given in to the theatrical. I went out and bought 2 wigs and 10 hats.
Btw, nothing will get me to go the way of the thong, not even a Brazilian.
December 19, 2006 § 9 Comments
I was told to post regularly, I ignored that. I was told to pass on posting if there’s nothing worth posting about. That made sense. I’m back, and a little transparent.
I felt great last week, so I didn’t write. Not just great for a person with cancer, I felt regular anybody great. Angst was at a minimum, there was a break in the battery of Dr’s appointments and the worst of the meds had managed to move through me with predictable albeit mild effect.
Last week was shockingly ordinary. I forgot about my condition. I packed lunches for my daughter and most days pulled off pick-up. There were the usual baths and later than usual bedtimes and we celebrated Hanukkah. I exercised, I had an appetite, I stayed awake, I made holiday cards and healthy dinners, I worked and even worked-out. I went to NYC for business and the only tell of things to come were two odd appointments to look at wigs.
There wasn’t much to blog about last week, so I didn’t.
My second treatment was yesterday.
Appointment reminder for Monday 12/18/206
1:00pm CHAIR 20
An appointment with CHAIR 20 just sounds nicer than an appointment with CHAIR 22. My luck turned for the better yet again, when last minute musical chairs placed me CHAIR 18. In my shtettle (little village), the number 18 is a very good number, one of the best. It’s associated with the Jewish word Chai, meaning life and good luck and I welcomed a good omen just before chemotherapy.
Two treatments down and I feel pretty good. My other Oncologist, Steve Rosenoff and the personal guardian angel of cancer girls everywhere (also Sarah’s dad), told me that the first chemo treatment often predicts tolerance over-all. This was tremendous news forme since other than exhaustion and vice grips in my gut I took the toxins well and the week after I was somewhat energized and in good spitirts.
All along I had been bracing myself for a cumulative awful effect and hideous physical surprises from rapidly dividing cell points. Stomach pain, mouth sores, nausea and vomiting and many more revolting things if you like at http://www.chemotherapy.com
The fatigue will increase as my bone marrow takes a beating, but if I did not wretch my guts out after the first treatment and suffer from sores and gastro disasters, I’m most likely off the hook. With that good news in hand, I feel so much better about going forward.
I’ve borrowed from the horticulturalists and am visualizing pruning. With every treatment I receive, I get stronger. One part action hero, one part of cheerleader, and nothing but positive thoughts.
Treatment weeks I’ll lay low, and the week after I’ll make up for lost time. I love having a plan.
While I’ve gone lazy on writing, the anecdotes have been piling up.
My dense dosing of chemo requires a shot to boost my white blood cells. I was in for the requisite prick today when my Oncologist Dr Steve Come approached me. He pulled up a chair and got comfortable and cozy as I awaited the injection. I was surprised that he took the time to hang with me, and more surprised that he closed his eyes and cringed when I received the shot.
I came the appointment wearing one of two new fetching wigs. I asked Dr Come what he thought and he was more hair-centric than expected. “Henna?” He was close. Indeed, I had ventured boldly into the world of red for fun.
“Blah blah blah you are doing well, that’s good. You are ½ way through the worst of it. Blah Blah blad. The new anti nausea stuff is pretty terrific blah blah blah. You know those pictures you took of the treatment area and of the nurse, Julie and of the chair.”
“The lawyers have very strict rules and they do not allow photography in the treatment area, blah blah blah they brought this to my attention.”
“The attorneys contacted you about the pictures of the treatment area on my blog!”
“I think it’s fine. I htink it’s great that you’ve been writing. but but but….the lawyers have rules and can you remove them from your blog”
Not even chemotherapy can stop me from making waves. The posting from December 5, was aptly titles, “before they put the cabash on photos”. Turns out they put the cabash on the photos. So much for that documentary.
Next post it’s all about my hair.
December 9, 2006 § 4 Comments
I was driving through Coolidge Corner this afternoon when I started thinking about real life tragedies. Men and women stricken suddenly by illness. I thought about their lives and the lives of their families turned upside down.
I was heading down Harvard Street. The light was green in my favor. I was freezing, but other than that, my life was perfectly normal. My life was certainly not a tragedy. That was someone else’s sad shtick.
I assumed I would always be exempt. I was not exempt. Worse, I wondered if I was still young enough for my illness to be considered a tragedy, or is this what we are to expect as we push nearer to 50?
It has been a very long week for me.
On Wednesday I went to see my acupuncturist. Jim Guo. I had no idea how sore and tired I was until he touched my elbows and ankles and they ached. A million needles later, which I slept through, like I slept through a phone call the other day and every movie aired for me recently, and I was less achy by some degree.
I was grateful for Jim’s diet advice. He recommended a constant flush, cups and cups of warm water. Ginger tea, soup with ginger and garlic, more ginger, more garlic, warm water, and a warm bath. I had to flush the toxins. I had to free the cannonball that had lodged in my belly. I had to wash it away, with my own Katrina.
Jim’s credentials were reassuring. He had shepherded his father through chemotherapy and colon cancer.
Later that afternoon I received a call from my health insurance company. When BCBS came up on the caller ID I was moderately panic stricken. What if breast cancer was suddenly not covered by my medical plan? Happily there is a limit to the bad news you can get in a month and this call was nothing more than an introduction. They have assigned me a nurse caseworker. Her advice. Drink lots of fluids, and flush the toxins.
Tonight I made chicken soup with ginger and garlic and will bring a Thermos of mint tea to bed followed by a second. I will visualize cannonballs floating away on chemo rivers while the blood in my body is manufactured brand new.
December 7, 2006 § 8 Comments
The day after my first chemo treatment I was scheduled to meet with my Oncology Social Worker, Hester Hill. Hester earned her stripes in not one, but two battles with breast cancer. When she talked to me about hair loss and counting down the days, I listen, slacked jawed and nauseous.
Somewhere between 14 and 21 days after my first treatment, they tell me I will lose my hair. The betting group puts money on day 17. December 4th + 17 days = December 21st. There is no elegant exit or dramatic moment when my hair falls out at once. Instead it will come out in patches when touched or brushed. I can look forward to a constant shed. I’ve arranged for my cleaning lady to come every two weeks.
Pretending to have some control. I have an appointment to get a haircut. Not the usual cut and color, blow dry and fluff with styling gel and a touch of hold. This haircut will be an inch or two shy of a buzz cut and if Ed will see me I will be his first client on December 16th. The plan here is to minimize the subsequent molting on the new furniture.
For the record, there is so much practical advice out there about losing your hair, sleep with a towel, throw a screen over the drain, do spare the plumber unnecessary trauma.
After Hester’s appointment, I was in for a shot of bone boosting Neulasta, standard treatment when dense dosing chemotherapy. That’s chemo every 2 weeks vs. 3 weeks. No surprise I opted for the express lane as long as they accept my ez-pass and white cell count. If this phase can be over in four months rather than six months, I will do my best to tolerate cannon balls in my belly and debilitating fatigue.
Hair loss, bone-boosting shots I forgot to draw blood for the genetic test yesterday. Yes, I just walked out of the hospital happily by-passing the parking clerks because cancer boys and girls get 3 hours of parking for free. I went home. I must have called someone. I forget whom. I must have cried to someone, I forget whom. I went on line to research wigs. I got into bed and cried, Frannie lent me her softest pillow to hug. That helped.
After learning that my health insurance company will give me a $500 allowance to buy a wig, I’m actually looking forward to the adventure with DD and LB in tow. For sure I will try on the dreadlocks, the blond bombshell and the blue black asian number. Pictures forthcoming.
December 7, 2006 § 1 Comment
Moments after my diagnosis I actually had my wits about me. I contacted Carolyn Ross and ask her to document whatever it was I was going to encounter. If I am to lose my hair and body parts, then seize the day and lets get some great pictures before night closes in on my magic hour. Carolyn is a terrific photographer; gifted, intuitive, brutally honest and in my case tremendously generous.
Art is so powerful when pain is plainly palpable, how could we resist?
There will be plenty of days when I will crave an image of myself other than the one that faces me in the mirror and I will have Carolyn to thank for an instant up-tick in attitude.
December 5, 2006 § 1 Comment
Sunday evening my some of my closest friends took me out for a last hoorah before treatment; hot tubing and fine dining at Oleana Restaurant. Our group of foodies ordered it all and we shared each and every morsel without an ounce of pretense it was perfect. I love them.
It was prefect timing. Now that I can claim my first chemo treatment under belt and in my veins there are small clues as to how things may change. Fine dining might be lost on me for a period of time. Almost immediately I developed a lead pit in my stomach. It threatened to rise up, but generally settles back down. Four varieties of anti nausea meds show some muscle. I slept most of that first day and into the early evening.
For the record, I chalk today’s napping up to mental exhaustion. The onset of true chemo fatigue has not yet hit. In fact, this is likely to be one of the best weeks ever. I am doing my best to enjoy it.
We arrived at Outpatient Oncology on the 9th floor close to 8a. I saw Chair 22. I pulled out my camera and looked for dramatic angles but it was all pretty drab. Chair 22 does not fly solo, Nurse Julie Fioadelli is it’s pilot.
Moments later I was told that the use of photography was not allowed. I suspect the grumpy receptionist outed me. Cancer patients goofing around is bad form in the clinic. Who else can I piss off? I’m feeling feisty.
So as not to be bored, every 30 minutes or so a troop of very cheery cancer survivor volunteers make their rounds to each of the chairs paying special attention to newbie’s like me.
“Something to eat? Cookies, cakes, this one is home made. Juice? It’s good for you.” They were gloriously upbeat and I though ideal for a show; I asked if they could sing a Christmas Carol for me. I doubted they’d know the draidel song or other Hanukkah hits. How about Patsy Cline? Maybe a scene from White Christmas? I settled for water. They concluded I was odd and didn’t return except to say good-bye. Maybe they went off to practice for next time.
The entertainment if you want to call it that was ongoing. Dr Patnaik came by – the Fellow to discuss my treamments every three weeks. Excuse me, we discussed dense dosing every two weeks. This un-nerves me. Dr Come arrives alomg with his with gracious bedside manner and a touch of new age calm that comes from 40+ years of experience on the front lines.
I realize this will be nothing but surprises; Forget making a plan. If the tumor responds, surgery could come sooner. If the tumor doesn’t respond, surgery could come sooner. If I can’t tolerate chemo ever two weeks it will spread to three weeks.
I had a calendar and every two weeks I plugged in chemo and I could see an end to this in March and then Surgery and then hair again in the spring and life, as I once knew it in the summer. Oh I am going to need to breath so deeply into this chaos and the unexpected and pray for miracles, and good news and throw out the damn calendar.
Once the docs agreed on the dosing, the first of the two chemo drugs was administered by hand into the IV. Bright red; Adriamycin. This was a controlled injection under Julie’s careful and consistent pressure. Any slip onto my skin or into a muscle could cause serious damage, a more benign out come is a lovely pinky pee.
A laid back Cytoxin drip followed the Adriamycin. “kill the cancer, kill the cancer”. I need to meditate on that more. Marty pulled out his cell phone and capture me deep in the midst of a Cytoxin drip.
But there is more… While the IV dripped the geneticist came in with a 40-page power point deck all about what genetic testing means to me. I think she was 28 years old.
I’m not one to moralize. Give me the test and tell me what lies ahead. I am grateful my daughter has her own legacy and Buddah birthparents in China. Happily she will be immune to my Ashekazi mishigas; breast cancer, ovarian cancer, colon cancer, tsoris and guilt. I am sure you can find these on a pair of genes with markers for a love of money and an appreciation for a bargain.
The way I look at it, my mother spent 10 + years in a concentration camp, an overdose of PTSD at an early age was bound to have adverse effects.
Give me the blood test and I will read it, or rip it up or feature it in the center of a collage.
BTW I love the booties