Sprinting Towards 60

Getting Ready for Camp, 1966

June 26 marked the 7th month since my diagnosis of stage 3b non-small cell lung cancer. Life expectancy from date of diagnosis, with treatment, is 12-18 months. So, I’m a little shy of half-way there, if we’re going by the more optimistic figure. Of course, statistics are only statistics, not a finite rule applied to everyone fighting cancer. A number of people survive far beyond that bleak prognosis; I’ve met some who’ve passed the 7 year mark, a few even making 10 years and beyond. But, that’s rare.
With this in mind, I feel I should be getting ready for something substantial, like a journey to some unknown destination for which one isn’t quite sure what to pack. True, I feel fine, except for the cough and some shortness of breath. Much of my energy has returned, I’m sleeping well again, don’t have a fever and my scalp is sprouting baby-fine fuzz which just may turn into a full head of hair. Joan and I had a small crowd over for a barbecue yesterday. All day I received compliments of, “You look great!” Each sounded sincere, if slightly surprised. The unspoken sub-text seemed to be, “and YOU have cancer?”
The other thing people openly marvel at is that I continue to work. Since I do have a job, along with the financial responsibilities requiring me to keep that job, what else would I do? With exception of the few days recovering after chemo treatments, there’s been no good reason to stay home. Life is comprised of the whole experience, not just the vacations away from work. I’ve never been much good at compartmentalization. While I don’t share all my personal life with my work colleagues, work and the charactors populating it are very much a part of my life. While one tries to refrain from taking the stress of work drama home, work is part of it all. And…it really does make these long weekends extra special.
All my life, I’ve eagerly anticipated trips to places I’ve never been. Joan and I are planning a road trip to Mt. Rushmore in September. We’ve been pouring over maps and travel guides we picked up from AAA weeks ago. We’re even practicing erecting and breaking down our pop-up tent in preparation. By the day we leave, we’ll hopefully be well prepared for the trip ahead. We take as much pleasure in the planning and preparing as we do in the actual travel.
So, whether or not I’m half-way to whatever comes after this, or not, my focus is on getting ready. I’m not completely convinced there’s an afterlife, or reincarnation, or anything at all following this life. None of that is within my control. What is within my control is how much care and pleasure I take in preparation for the journey…which might not be a journey at all. And that would be true whether there were 5 months or 50 years left until day of departure.

Another Friday, another cycle of chemo. As last time, the steroids kept me feeling almost normal for the remainder of Friday and most of Saturday. Knowing that the steroids wear off within a day, I used the energy to cook an early dinner on Saturday…so early my grandmother would have classified it as ‘supper.’ Sure enough, the energy began slipping away after I’d eaten the last bite of spaghetti, and it was to bed with me for the next 3 days. Besides the exhaustion, the last treatment brought an itchy, scary looking rash to my entire scalp on Sunday morning. I was so wiped out, I half-heartedly daubed it with antiseptics and took it back to bed. The pillow didn’t complain.

The 5 days right after chemo seem to be the worst, and the exhaustion and other side effects seem to worsen each cycle. I suppose I should embrace this utter tiredness, which hopefully signals the chemo is killing off cancer cells. We’ll know how well it all worked after my PET scan on June 10. Still, it seems odd to be drifting through the gray afternoons with the bedroom shades down. This time I wasn’t able to sleep solidly, kept awake by worrying about work deadlines. I simply felt too tired to sleep. I finished 3 books during my convalescence, none of them were about cancer. When I slept, I had strange, stressful dreams. The last was about vacationing on a (non-existent) Caribbean island with terrible food service and obnoxious fellow resort guests. As pretty as the dream place was, I felt trapped among the monotonous conversations and bad dining. I awoke sweating and with arms aching from clutching my pillow all night.

I returned to work today and had to stop and sit down during the block long trek between the parking garage and my office. I felt about 95 years old. I really don’t think I’ve ever felt this weak. As feminine as helplessness and frailty are still viewed by some, it’s just not working for me. It’s very hard to accept in myself, even if it’s temporary and for a very good cause. I identify strongly with words like, “robust” and “gusto” and “alive.” I’ve felt none of those things the past 5 days.

This is just the dry-mouthed, itchy-scalped, too-spent-for-polite-conversation chemo talking, of course. If this cycle’s side effects mirror the last, my joie de vivre should return the end of the 6th day, which will be tomorrow. Joan and I will be traveling to Utah to open our vacation home for the summer. We’ll overnight at Joan’s sister’s in Mesquite, Nevada. We’ll know I’m back in business if my lust for video poker returns; Deuces Wild is this gal’s game. Tonight, the thought of gambling, engaging in romantic endeavors,  or devouring a (good) meal evokes a, “Meh…” in my nebbishy little post-chemo soul. By tomorrow night, the nebbish may have gotten so tired of being tired…he’s gone back to sleep until I need him again. Let’s hope I never do.

Last Saturday morning I woke up with much less hair than I’d gone to sleep with. It’d been very thin for months, due to the six weeks of chemo I had earlier this year. My oncologist warned me that the new cycles of chemo would get rid of the rest of it in 2 -3 weeks. Sure enough, it all fell out right on schedule.

Joan’s reaction was to burst into laughter (she does a lot of that). My reaction to her reaction was to burst into tears (I do a lot of THAT). Then I shaved off what few wisps were left.

The few friends who’ve seen the pictures of my head au naturale have likened me to Rachel Rosenthal. I’m not quite sure how I feel about being compared to an 84 year old performance artist, as brilliant as she may be. I’ll let y’all know.

Meanwhile, here is an tribute to my former head of hair. Long may it wave…after it grows back.

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Check out the hairdo...argh!

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All gone!

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Spring is here...and so am I!

Since my triple-dose of Carboplatin and PACLitaxel last Friday afternoon, I spent most of the week in bed. Friday night and Saturday passed without a wink of sleep, possibly due to the double-dose of steroids. By Sunday I was pretty much knocked out, sleeping through that day and the next. I can’t remember ever feeling so exhausted after having had so much sleep. A trip to the bathroom on Monday found me actually contemplating taking a nap on the old tile floor rather than tottering the 25 feet back to my bed. I slept through half of Tuesday, and all of Wednesday. Today was my first, full day back to work. The slight dizziness and ache in my joints is still present, but the rest of me is beginning to feel “all the way live” again. Unfortunately, the appetite has also come back; having cancer doesn’t seem to be a reliable substitute for attending Weight Watchers. Oh well, at least most food tastes like it’s worth the calories.
In my 20s I had a friend named Rose who once gave me a compliment I’ve cherished to this day. She used to refer to me as being “All the Way Live.” I knew my usually unchecked exuberance is a big part of me, at times having been made painfully aware that a little reticence on my part might serve me well. She was the first person to make me feel my blatant gusto wasn’t something to be ashamed of.
Today I drove home with the top down, relishing the bright verdure of Beverly Hills in Spring, listening to such cheery tunes as Everything’s Coming Up Roses by Ethel Merman, and smiling at tourists in a multitude of roofless tour vans. After nearly 5 days in bed, being outdoors was a treat…gridlock on Sunset Boulevard or no. I’m hardly up to riding my bike to work, yet (nor was I BEFORE I had cancer), but most activities sound more appealing than drifting through another day in a darkened room.
So, living through cancer isn’t all a sad affair. The low points are pretty low, but the highs are pretty swell.
Not receiving a verdict of NED (No Evidence of Disease) from my post-first line treatment CT Scan was pretty disappointing. High dosage chemo isn’t exactly a ride through Beverly Hills. But, it feels pretty darn good when the side effects start diminishing and the interesting ins-and-outs of life come into brilliant focus again.
I’ve been following a blog written by Linnea Duff, a woman with stage IV NSCLC who just celebrated her sixth year since diagnosis. Having never been NED in six years, she’s come up with another term, NDY, or Not Dead Yet. She’s still active as possible, enjoying her family and living on in Massachusetts.
So, my goal for the next year: to be NDY, and always…always All the Way Live.

I spent my first post-chemotherapy Friday on a flight to Maui. At first I was a little self-conscious of my turban-covered head and mask-covered face. Then I spotted a couple of others traveling in head-covered, eyebrow-less, eyelash-less splendor. I believe we were all happy to land safely after a somewhat turbulent flight. We still had cancer when we landed, but we landed.

So, here we are in paradise, cancer or no. I keep forgetting to put my cap on, venturing out to our lanai with my baby-bird-fuzz head exposed. The air on Maui is soft, the sun so warm. One wants to bare everything and just…bask. I expect to be wearing swimsuit and shorts most of the trip, no matter how many outfits were crammed into my suitcase.

This morning’s news is full of tsunami, death and destruction. A town of 9,500 missing, a nuclear plant in jeopardy of meltdown, 1,300 people known dead thus far. And…most of those people weren’t living in fear of death. They were living one minute, gone the next. The survivors are left to patch together what they can from the wreckage, and live on.

Every disaster, natural or man-made,  seems to be followed by much discussion of how to prepare for the next one. Now I see articles questioning how prepared Californians are for an 8.9 earthquake and/or tsunami. Yes, we can stock up on emergency supplies and formulate an escape plan. Hind-sight is indeed 20-20. But, also, fate is fate.

I have several friends who are longtime cancer survivors. They’ve been quite supportive. Their philosophies about how to live vary as widely as their personalities. One advises me to go on a special, cancer-fighting vitamin regimen and to have my house tested for radon gas. Others advise meditation and prayer. I’ve been introduced to a massage therapist specializing in cancer victims. Whether or not I want to engage in any of the prescribed “remedies,” I do appreciate the caring behind the advice.

To prevent cancer, one should avoid: smoking, sedentary lifestyle, carcinogenic chemicals, being born with the wrong genes, bad air and stress. The reality of it is this: you get what you get. There are 30 year, two-pack-a-day smokers who never get cancer and die in their 90s of old age. There are never-smokers who die from lung cancer in their 40s. One does the best one can…and then it’s a crap shoot.

Japan has some of the strictest seismic building standards in the world. This, along with an advanced tsunami warning system and earthquake preparedness routines ingrained at youth, probably saved many lives. But there are many who didn’t make it, despite it all. All the earthquake preparedness routines in the world won’t bring them back.

So, what does one do? Live in fear of death by tsunami, plane crash, earthquake…cancer? Avoid living in coastal areas, travel by plane and breathing when in Los Angeles? Or maybe we just live with a modicum of caution and great zeal. We live and we enjoy every sunrise, despite the sunset that comes for us all.

Part of the experience of living through cancer is to live in terror of an entity growing  silently, rapidly and ruthlessly within the same body we’ve always trusted. There is a feeling of betrayal, a feeling of being invaded. The odd sensation of cursing, and having loved ones curse, something bursting into unwelcome life inside us. This type of growth we fear.

During this experience, there are other growths, equally unexpected but something to savor. Who knew, that at the age of 56, my vocabulary would expand to include such polysyllabic delights as: bronschoscopy, mediastinoscopy, metastatic, pneumonectomy, bilobectomy, neuropathy, Carboplatin or Paclitaxel? I would never have learned those terms had I never had lung cancer. This may sound Pollyanna-esque, but my inner nerd mightily rejoices in any increase to vocabulary, however gained.

The other happy surge of growth is to my circle of friends. I’ve gotten closer to many of my existing friends, and cherish this development. After cancer, the circle expanded to include my Radiation Oncology Waiting Room buddies, some of who are also my Chemo buddies. When you see someone every weekday morning, one grows attached. We share our names, our diagnosis, our history. We compare notes about chemo, the effects of radiation, the impact on our lives and families and more. We worry when our fellows don’t show up for scheduled therapy.

Chemo sessions involve a stay of about 3 hours in the Oncology treatment area, during which my chemo buds and I are hooked up to an IV on a rolling stand. Some patients visit other patients to chat, some sleep through the sessions. One overhears a patient in the next cubicle answering questions from doctors, nurses and the resident social worker. I listen to the dilemma of how much parents should tell a 12 year old child about their dad’s prognosis; how to get through the neuropathy and nausea many experience when bombarded with certain drugs; that the unpleasantness of constipation/diarrhea is common.  Knowing these bits of the journey of others makes me care about them. It is the camaraderie of the sickroom, and serves all of us by helping us realize we’re not all alone. Who could blame my “normal” friends for growing inwardly glassy-eyed over my recitation of symptoms, side-effects and treatments? My radiation/chemo buds do not. Nor do I when they speak. This is not a polite listening. This sharing makes us feel less odd, less isolated through this terrifying, out of control, ride.

My circle has further expanded to the contacts I’ve made on the Lung Cancer Survivors board on inspire.com. I read entries from as far away as Australia: the highs of receiving a NED (No Evidence of Disease) verdict after successful cancer treatments; the lows of someone finally succumbing to the disease after only a few months of fighting stage IV SCLC (small cell lung cancer); the tragedy of an all-too-brief remission. It all helps, the contact with other cancer patients and their families helps, even the bad news.

The scary part of cancer, the wild reproduction of cells that blocked the airway to the middle lobe of my right lung; that growth I fear. But life is rarely only filled with the horrible, even when going through this disease. I do not feel like I’m tottering around in a nightmare; I relish all of the good growth achieved by living through this. And there is much to relish in this life.

Photo by Diana Lundin

I was scheduled for chemo session #5 this morning. We arrived early, and even snagged a great spot in the crowded parking lot at Kaiser. Before I set foot in the medical building, my iPhone rang. It was Yvonne, my chemo nurse, telling me not to come in. My latest white cell counts were too low to proceed with today’s treatment.

Who knew that being rejected for chemo would affect me so drastically? I felt like sitting down on the cold, oily concrete and howling. Judging by my (over) reaction, you’d have thought I’d been turned away from the Senior Prom, despite my sparkly party dress and pumps.

The reality of it is that my doctor would prefer to not kill me with chemo. While this may change, this is definitely a good thing. I’ll wait this week out, have my blood test done next Thursday, and hopefully be back in the chemo-saddle next Friday at 9am.

So far, for me the hard thing about having cancer hasn’t been the physical symptoms. Yes, the coughing up blood part was both disturbing and painful. Momentarily not being able to breathe was scary. But I seem to be past that part; breathing is easier and better, my coughing fits are less frequent and colorful. I believe the radiation and chemo treatments are doing their job: killing cancer cells and shrinking the tumors. The hard part of this ride is the emotional ups and downs.

My friends and colleagues can tell you I’m a pretty emotional creature. I move from anger to tears in a flash, struggle with hurt feelings when no offense was intended, and am prone to worry about…everything. Luckily, these negative feelings visit me less often at 56 than at 16; and when they come, they don’t stay long. That is, they didn’t until I found out I have lung cancer.

Most days are fine and relatively sane. That is, days that are not holidays; “Is this my last _______?” (fill in the blank with holiday du jour). Or days that are not work days. Yesterday, I found myself ready to throttle a colleague because he’d opted to come to work sick. I was actually thinking thoughts like, “Is he TRYING TO KILL ME?!!!” Of course, when I catch myself thinking this way, I feel like some kind of ridiculous hypochondriac narcissist. The guy just wanted to get some work done. This had nothing to do with me. I’m probably the one who needs to stay home.

If my immune system were less compromised, I’d prescribe volunteer work as a remedy. Taking care of people has always helped me gain perspective on how bad my life isn’t. Actually being the patient is far more difficult. As engaging as Garbo was as Camille, being a real-life victim of a potentially terminal illness is just tedious. I’m tired of being tired, tired of worrying about microbes and whether or not I’ll see the next Groundhog Day, and tired of all these melodramatic emotions. High drama is fabulous in an opera, but would you listen to La Traviata 24/7?

What is getting me through is the kindness of friends, commiserating with fellow cancer patients, and my own black humor. The chemo treatments calm me down, even as they wipe me out, because every treatment seems like a battle against the disease. Even the most hardened warrior sits out a battle or two in a war. This just happens to be the week I sit out mine.

Sitting out the battle.

Donerail, long shot winner of the 1913 Kentucky Derby

Joan and I met yesterday with my radiation oncologist, a nice young man named Dr. Barry Goy. Dr. Goy will be overseeing my upcoming radiation therapy. I’ll meet with him for the initial planning session next Thursday morning, during which he’ll localize the areas in my chest to be treated.

During our meeting, Joan asked the doctor what the current prognosis is for stage IIIb non-small cell lung cancer patients. He told us statistics show a 5-year survival rate of 10-20% for treated patients. The median survival rate (when 50% of patients have survived, and 50% have died) is generally between 12 and 18 months. Not sunny news, but hardly a surprise to me, the Hopeless Google Junkie. Especially a hopeless Google junkie who also happens to be Queen of Long Shot Gamblers.

When playing the ponies, who cares about the horse with an easy 2-1 odds when one can bet on horses like Donerail? Donerail was the winner of the 1913 Kentucky Derby; a 91-1 long shot. He was a 3 year old stallion who rushed up from way, way behind to win the race in the stretch, beating Ten Point, a 6-5 favorite.

Dr. Goy tells me that radiation therapy is usually done over 5 weeks, in 15 minute sessions every weekday. The plan is for me to go each day from the radiation to the chemo session, a more aggressive approach to killing off cancer cells and shrinking tumors. While I have to wait until 1/20 to meet with the oncologist who will oversee my chemotherapy, Dr. Goy hopes to begin the radiation slightly before the chemo commences. Am I champing at the bit to get started? Yes! I was diagnosed with lung cancer on November 26, 2010. I’m holding November 26, 2015 in my mind as the date I want to be here to see; just as sure as Donerail set his eye on that long-ago finish line. Despite all odds.

My pulmonologist called me this morning with the PET scan results. The good news is that the cancer seems to be confined to the middle and lower lobes of my right lung and lymph nodes in right side of my chest. This beats it having spread to my liver and other organs.

While some might welcome a quieter Joyce, I have a particular fear of the cancer spreading to any other parts used for oral communication. Although losing 70% of my right lung could end my career as a Wagnerian contralto, I’ve thought of of a way to continue in a whole new direction. My new singing style will involve humming country western tunes through my nose. This will start a whole new vocal movement, known as the “Croker Method.” I’ll tour the country in a series of concerts, nose-humming the song library of the late great Hank Williams while accompanying myself on the Jews harp…no mean feat! The act will feature dancing girls, dramatic pyrotechnic effects and an ever-evolving wardrobe of stunning medieval headdresses.

But, for now:  first things first. Next Wednesday I’ll undergo a procedure which involves collecting tissue samples from lymph nodes in my thoracic cavity. The samples will be biopsied to ensure no cancer has spread to more lymph nodes. Hopefully, this will clear me for surgery on 1/11. After the surgery, I will begin chemotherapy and radiation treatments.

So, now we know.

Off to practice those Hank Williams tunes in that bold, new style!