January 29, 2023

The Super Bowl Inside Me


What do the Steelers and cancer have in common? Nothing. So why during the play off game against the Ravens was I bargaining with Mike Tomlin for my cure?

I did it silently, while sitting on the couch in my friend’s studio apartment in Chicago. Nobody knew I was staring at the grass on the screen wondering ‘If I could trade in my cancer for a loss in the play offs, would I?’ as though that was a realistic option.

My first thought was no. In the depressing steel demise of my 1980’s childhood, the hope of Steelers victory was the glue that held Pittsburgh together. I remember before the Super Bowl how proud I was stepping onto the East Hills school bus wearing my One for the Thumb in ’81 sweatshirt. My Dad was one of those unemployed Yinzer in the ‘80’s, and though we didn’t yet know what ‘therapy’ was, hearing him screaming at the TV on a Sunday afternoon was an incredible release. How could I trade in the steel city glue for the disappearance of two tumors on my neck?

But now, three days before Super Bowl XLIII, I think the people of Pittsburgh would understand.  I want to knock on Mike Tomlin’s door in Squirrel Hill. We would talk on his porch. ‘Look man, I cannot even imagine how badly you want this, how hard you have worked for it, but please. I’m so tired of malignant cells massing in my neck.  I want all the Terrible Towels, Yes We Can t-shirts, and black and gold Eat’n Park smiley face cookies to be for nothing. I want the Steelers’ victory to disappear. I want to win. And I don’t want a parade or a celebration. I just want to go to bed quietly on Sunday night with no tumors in me.’ I’d say please, but really, I wouldn’t give Mike a choice. My way is the way it would have to be.

Maybe it was climbing on slag heaps and hanging out with guys in abandoned steel mills during high school that gave me this cancer. Many in Pittsburgh are still riding out the effects of the mills in their lungs, bones, and blood. I’m tenacious about my cancer care. I ask the right questions, get the right answers, but still there is no cure. So what is left to do but daydream about the melodramatic, the impossible, and bargain with something that is precious? I have as much control over my cancer as hundreds of thousands of drunk Yinzers have over a Super Bowl win. We’ll wait and watch.

If you are a cancer patient, have you ever bargained with the impossible around your survival rates or test results?

Kairol Rosenthal is a native Pittsburgher living with cancer. Her new book Everything Changes: The Insider’s Guide To Cancer In Your 20′s and 30′s will hit the shelves in March.  https://everythingchangesbook.com/

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January 28, 2023

Five Ways To Help Your Caregiver

In the Young Caregivers section of my book Everything Changes, I write about a study that shows while cancer patients and caregivers both suffer from quality of life and mental health issues, patients have a greater sense of spiritual wellbeing and social integration than our caregiver counterparts. We tend to bounce back, and sometimes even benefit from the cancer experience, while caregivers are left alone to pick up the pieces.

Some say patients cannot help caregivers, I disagree. My husband Shannon should be canonized as a saint for his caregiving both in crisis moments and on a daily basis. It is easy to identify what he does for me, but I asked him what I do that makes his job easier. We came up with a list - it doesn’t just apply to partners, but any caregiver: parents, friends, siblings, roommates.

1. Make a break
Caregivers may feel guilty taking a break. Patients need to encourage and facilitate it when able. I email Shannon’s buddies suggesting they go out for Belgian beer. He usually won’t pick up the phone and make plans, but if his friends initiate, he goes and enjoys the time away.

2. Lean on others
Your caregiver can do a lot, but they cannot be your everything. Get support elsewhere. Sometimes when I’m crying at 3AM I pick up the phone and call my mom. Shannon is here for me too, but he is really glad to get a break and a good night sleep. Let others in.

3. Give internal updates
Be a good communicator. Let your caregiver know how you are feeling without being bratty or reactive. If my hormone therapy is messing with my head, I tell Shannon nicely that I’m on a hormonal roller coaster, I hope he can bear with me, and I apologize in advance should I become a bitch. If I’m scared about an upcoming test and don’t want to talk about it, I don’t just go silent. I tell him nicely that I’m scared and it is easier for me not to talk about it.

4. Listen to them
Find lulls when medical, administrative, and household chaos is not erupting and ask your caregiver how they are doing. Maybe they don’t want to burden you and feel more comfortable unloading with a friend, but at least give them the opportunity. (Warning: only initiate this kind of conversation if you feel secure, objective, and free of cancer patient guilt, otherwise you are opening Pandora’s box.)

5. Squeeze two fingers
Did you know that it is less bone crushing to squeeze someone’s pointer and middle fingers together instead of squeezing their whole hand? Think about that next time you grasp for your caregiver’s hand during an IV stick.

Do you believe that patients can be supportive of caregivers? What are some stories you’ve had about what works or doesn’t work in the patient-caregiver relationship? What other tips would you add to this list?

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January 27, 2023

Eight Tips To Stop Recycling The Cold-Flu

As a young adult cancer patient, I feel I have reached my quota of sickness. I don’t want more cancer, nor do I want my friends’ colds or their kids’ flus. Germs linger and it is easy to recycle colds within a household. If you, your roommate, your parents, your friends, or your kids have been sick, treat your dwelling like a New Jersey superfund clean up site.

1. Wash. Wash in hot water bed linens, towels, and the cozy throw you cuddle up with while watching TV.

2. Pillows. Launder pillows, or better yet, buy pillow protectors and launder them.

3. T-brushes. Crack out a round of new toothbrushes. (Purchase many at a time so you always have new ones on hand.)

4. Clothing. Wash scarves, jackets, or other clothing that comes in contact with your mouth or face.

5. Alcohol. Spray down knobs, remote controls, keyboards, counters, and cell phone with alcohol.

6. Pocket book. Cleanout and wipe down your purse or wallet.

7. Kleenex. Empty the mountain of Kleenex piling up in your trashcan.

8. Air. Open windows and crank a fan to get fresh air flowing. Live in a freezing climate? Air out while you are walking the dog, running to the store, or visiting your downstairs neighbors.

Do you have any other clean up tips to add to the list? Does it change your mental state to wipe away the physical grime? Do you ever avoid friends’ or family members’ homes because they don’t clean after colds?

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January 24, 2024

Off-Label Drug Thugs

The FDA has made a new decision that will affect how our doctors are informed about the safety and efficacy of drugs. Let me give you some background information.

Two years ago a new batch of tumors was found in my neck and I began taking Avandia, which is FDA approved for the treatment of diabetes. A group of scientists had begun experimenting with Avandia as a thyroid cancer drug, with promising early results. When you use a drug to treat a disease other than what the drug is approved for by the FDA, or when you use the approved drug for the intended treatment but alter the recommended dosing, it is called “off-labeling.” This practice is particularly common in oncology.

Am I A Hypocrite?

It is legal for doctors to prescribe off-label drugs, yet the doctor who brought this research to my attention didn’t want to get involved in such risky business. I cannot blame him. Am I a hypocrite? As a patient I am wiling to take an off-label drug, but were I a doc, I don’t think I would risk putting my patients in harms way by prescribing treatment that had not undergone the rigorous stages of clinical trials or FDA approval.

Because the side effects and efficacy of off-label drugs are unknown, the FDA had prohibited pharmaceutical companies from marketing them. Am I a hypocrite? I am willing to take an off-label drug, but I agree that pharma should not be allowed to market them, as this would allow pharma to cash in on drug sales without investing in proper research and development. (Actiq is a pain med approved for cancer patients that is 80 times more potent than morphine. When the pharma company began illegally marketing it as an off-label drug their sales rose 3000% to $471 million a year.)

Swindling Swines
This kind of profit-over-safety swindling is about to explode. This week the FDA finalized guidelines that will now allow pharmaceutical reps to distribute to doctors articles about a drug’s off-label use. Sure there are limitations to this new off-label marketing: The information cannot be false or misleading, and must come from an organization that publishes articles that are peer reviewed by expert scientists. These guidelines allow pharmaceutical companies to police themselves to determine what is false or misleading, and overlooks the fact that many expert scientists on peer review boards are often on pharma companies’ payrolls too.

I hated that as a patient I had to make a gamble about whether Avandia would work and/or make me sick. I chose the off-label drug because I’ve had cancer for eight years and do not respond to current treatments. Not covered by my insurance, I spent hundreds of dollars on Avandia. It did not shrink my tumors. While I am glad I tried Avandia, it sickens me that pharma may now place more patients in this position, while ducking out of investing in research and development, and watching the bucks roll in.

Have you ever considered taking off-label drugs? Do you feel that pharmaceutical companies should or should not be able to market off-label drugs?

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January 20, 2024

Drama Reduction Program

My young adult cancer diagnosis quickly taught me that there is enough drama in the world that I don’t have any control over, so I should try to minimize the drama I can control. In my book, Everything Changes, I call this my Drama Reduction Program. Here’s an example of how it works: I cannot control the results of my PET scan, but I can stop making lunch dates with a prima donna friend, who I am certain has narcissistic personality disorder.

On December 31, 2007, a biopsy showed that my cancer was back (or more likely had never left.) The drama scales needed rebalancing ASAP: reduce, reduce, reduce. I realized that after eight years of living with this disease, I couldn’t hack working as a choreographer, writer, and cancer patient all at the same time. Three full-time jobs does not a sane person make. One of them had to go.

There is no cure for my cancer, and I had a signed book contract, so it was obvious that choreography was out the door, at least for a year. (Would it hurt my income? Only slightly - do you know how little modern dance choreographers make?) My plan, starting last January 1, was to create no new danceworks, attend no local performances, nor read the industry news rags. I have kept this promise for a whole year.

Cue The Irene Cara
I have danced and choreographed my whole life. (I had a good start growing up in Pittsburgh in the 80′s, dancing in the buildings and steel mills where Flashdance was filmed, developing a slight delusion about becoming the ballet version of Jennifer Beals.) For the first seven years of my cancer I possessed a slightly melodramatic, “cancer isn’t going to get the best of me” attitude. But you know what? That’s horseshit. Cancer sometimes does get the best of us and that is exactly why it sucks to have this disease.

Over the last year I’ve let go of my identity as a working choreographer and let the actuality of my cancer interrupt my goals and plans. It wasn’t as hard as I feared. I’ve learned that my identity as a choreographer was partly just a construction of my ego – a fine thing to let go of. And, this little experiment hasn’t interrupted my dreams – I still spend large chunks of time staring into space, imagining dances in my mind. And, just because I didn’t choreograph a new work for the first time in fifteen years doesn’t mean I am not a choreographer. Being a choreographer is who I am whether my shingle is hanging up or not.

So Sane
I have no clue when I’ll get back into the studio. I do miss it deeply. But, my book is about to launch. I’m taking care of a family member with Alzheimer’s. I’ve still got cancer. Making dances will always be extremely important to me, but not as important as my health or my sanity. And honestly, the characters that roam the dance community can score pretty high in the drama department. It has been a refreshing vacation.

What choices can you make in your life to reduce the drama? Has cancer interrupted your career goals or work life? If so, how have you managed that?

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January 16, 2024

Should You Write A Cancer Book? #1
Self Publishing

Lay of The Land
I am often asked by young adult cancer patients how to best go about writing and publishing a book. The answer is complex and calls for a series of posts.

Many changes have happened in the last two decades in publishing, both constricting and expanding the possibilities for getting your words in print. Massive conglomeratization has occurred in the publishing world – the 200 some major presses that dotted the publishing terrain have merged or been bought out. They have become imprints of the big giants, leaving about twelve big-players. At the same time, self-publishing has blossomed, putting more DIY book publishing power in the hands of the people.

Donald A. Wilhelm is the author of This Time’s a Charm; Lessons of a Four-Time Cancer Survivor. I asked him to write the following post on why he chose to self-publish his book. In subsequent ‘Should You Write A Cancer Book?’ posts, I’ll walk you through the steps I took to get my book Everything Changes published, outlining the pros and cons of getting published by a large sized publishing house. We’ll also hear from author and editors who work with small and mid-sized presses and university presses.

Donald A. Wilhelm:
“As a four-time cancer survivor, you have no idea how many times I’ve heard the phrase ‘You Should Write a Book!’ after I tell people my story. And for the longest time, I would always respond the same way… ‘Yeah, you’re probably right.’

After beating cancer, you are approached quite regularly, by friends or family members, to give advice to a third person that has recently been diagnosed. It’s an honor, a privilege and a duty to do so. But something always bugged me about giving advice to the newly diagnosed. The quantity and quality of advice I could give was limited by the amount of time I could spend with that person and the rate at which they could absorb the information I was giving them. But then one day it hit me. ‘Hey, I SHOULD write a book!’ I could write out all the experiences I have had in my cancer career and include the advice I would normally give. That way everyone would receive the same quantity of advice and could absorb it at their own rate. So Presto-Change-O…I was a writer.

Let me pause by admitting that when I started this process, I simply had no idea what was involved in writing a book. But I started anyway. Part of my “book time” was reserved for actually writing, while the rest of it was dedicated to reading other books about writing & publishing.

It took more than five years for me to complete the book from the time I first realized that I needed to. In my particular case, it took this long because I had 3 subsequent cancer relapses followed by chemo, radiation and eventually a stem cell transplant. So my writing journey kept being interrupted. I think looking back, that if I just sat down to write a book about a topic I was well versed in, it should take only about a year to do so. And that’s assuming you have a day job to keep up with as well.

The most difficult part of writing for me was the constant grind each day of ‘having to write.’ Even though I only wrote for 45 minutes a day, doing that for more than a year can really wear on you. Additionally, my most creative time of the day is somewhere between 2-5p.m. But given that I have to work a ‘regular job’ like most of you, I had to force myself to get creative first thing in the morning. Writing at 7a.m. for me was not easy.

I also spent about a year studying the different ways to actually publish a book. I investigated traditional publishing houses, traditionally self-publishing and so-called ‘Print on Demand.’ Ultimately I chose a company called BookSurge to publish my book. It was the right solution for me and I’m very happy with my results. I would recommend self-publishing to most people and suggest that you start your research by reading: The Self-Publishing Manual, How to Write, Print & Sell Your Own Book by Dan Poynter and The Well-Fed Self-Publisher by Peter Bowerman.

The reasons I chose self-publishing were many. Here’s a list of some:

• I didn’t want to give up control of the content of my book. My message was going to be clear, concise and occasionally filled with raw emotion. Nobody was going to tell me to “tone it down.” Cancer can’t be toned down.

• IF I were to get a book deal with a traditional publisher, it could take as long as 18 months for the actual book to come out. That delay was unacceptable to me.

• IF I were to get a book deal with a traditional publisher, I would still have to do all the publicity and marketing for it on my own. (Big houses spend those marketing dollars on authors like Steven King, not Donald Wilhelm.)

• IF I were to get a book deal with a traditional publisher, I would expect to make very little per book, virtually making the whole process a wash. Publishing is a business and you need to treat it as such.

• I have spent my whole career in sales. I feel I’m very good at conveying the benefits my company represents to my potential customers. I certainly should be able to sell my own story to fellow cancer patients and their loved ones.

• Books that are sold through the traditional channels in the publishing industry are sold as “returnable.” So at any given point, Barnes & Noble could ship back the 20,000 copies they ordered a year ago and expect a full refund! Even if they’re damaged. That business model simply doesn’t work for me.

If I could leave you with a bit of advice, I’d start by saying, ‘Do your research.’ Make sure you understand the publishing industry. Make sure the messaging in your book resonates with your intended readers. Make sure your cover price meets certain rules of thumb so you don’t end up producing an unprofitable book.

Next, make sure you’re passionate about the topic you’re writing. You’re gonna spend a notable amount of your life with this book. It needs to be something that can get you out of bed in the morning. Once you start on your path to publishing a book, don’t look back. Don’t let anyone dose your fire. See it through to the end. And finally, start writing! Don’t put off the writing until all the research is done. Just make sure you do both thoroughly. Your goal as a new writer is to complete a really crappy first draft. That’s all you have to do. Just organize your thoughts and get them down into a Word doc. Presto-Change-O…you’re a writer.”

Have you ever thought about writing a book on your cancer experience? What encourages and discourages you about writing and publishing? Are there any additional questions you have for Donald about self-publishing?

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January 14, 2024

Notes to Soothe the Savage Cells

Alice Cooper, Lucinda Williams, and Jonny Cash. “I’m a music-obsessive, and I can’t imagine having prostate cancer without listening to just the right music to complement my moods: joy and sadness, anger and gratitude, fear and doubt,” Dana Jennings writes in his New York Times article Notes to Soothe the Savage Cells.

Tara-Parker Pope of the Well Blog has created the Soundtrack for Health Contest. She’s asking cancer patients to share their favorite health songs and stories from their own personal playlist. They will pick their favorites, which will be posted in a public playlist. If your songs are chosen, you’ll receive a copy of Dana’s new book “Sing Me Back Home: Love, Death and Country Music.”

Here are mine.
1. Lean On Me (Bill Withers)
My best friend Jana sang this to me while I was shoved inside a scanning machine for three hours.

2. Pepper (Butthole Surfers)
I lash out to this in my apartment when I need to rage against the grim statistics of stagnant 20 and 30-something cancer survival rates. (Ours’ haven’t changed since Nixon was in office and I was in diapers).

3. Forever Young (Alphaville)
Sometimes I think I have cried myself dry, but when I listen to this cheesy, iconic ’80s song, I manage to have a nice cathartic moment and can then get on with living.

4. Walk On The Wild Side (Lou Reed)
There is something about shuffling around the apartment in my slippers while emptying my dishwasher and listening to this song that feels quintessentially “I’ll be okay with cancer.”

What are yours?

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January 13, 2024

Juicy Veins

Are your veins shot from chemo? Are you tired of being a human pin cushion? What can you do to get juicier veins for easier blood draws and IV sticks? I recently called the 24 hour-nurse line at my insurance company, United Healthcare, and talked to a friendly nurse about how I could make it easier when they are digging for a vein. She gave me the following ideas:

1. Experience. It is your right to ask for the most experienced nurse or phlebotomist on duty.

2. Gravity. Keep your arms dangling at your side, rather than in a raised position, to encourage blood flow to the veins.

3. Hydration. Unless you are on a no water restriction, drink a lot of water the day before and the day of your stick to plump up your veins. (Don’t be extreme though; too much water can have drastic, negative effects on your body. 48-64 ounces over the course of a day is often recommended). If you are on a no water restriction, be sure that you are adequately hydrated up to the time your restriction kicks in.

4. Caffeine. Stay away from coffee and caffeine, which deplete the water in your body and keep your veins from being their juiciest.

5. Warmth. Because cold can constrict blood vessels, for five minutes before the stick, use a warm, moist cloth on the area where they intend to try the needle.

6. Butterfly. Ask the nurse or phlebotomist if they can use the smallest needle possible that is appropriate for the type of test or procedure you are having. Particular blood tests call for specific needle types. For example, butterfly needles, while very tiny, cannot be used for red blood counts because they break up red blood cells.

7. Doc talk. Talk to your doc to make sure your weak veins are not the symptom of another health condition that should be checked out. Plus, if needle sticks are a perpetual problem, before a procedure, ask your ordering physician to intervene and write into the order a request for a particular nurse they know will get the job done right.

My inner lawyer feels the need to remind you that I’m not a doctor or nurse, and do not intend this information as medical advice. Always consult to your licensed medical practitioner before trying any of the above steps, or before proceeding with any other health related tips you read online.

Do nurses have a hard time finding your veins? If so, has it created anxiety for you? How have you dealt with it? Would it be easier if Heidi Klum were you nurse?

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January 11, 2024

Leela’s Geiger Counter

It is scary that technology used to rummage through Chernobyl is also used to measure how radioactive thyroid cancer patients become during our treatment. I have twice gone through Radioactive Iodine 131 treatment. The second time around I had a boyfriend who worked at Lawrence Berkeley National Laboratory as an astrophysicist. He stole a Geiger counter from work to measure how many rads I was throwing off. He turned off the sound so I wouldn’t be upset by the auditory reminder that I was a walking wasteland.

I have become friends with Leela on myplanet - a social networking site for young adult cancer survivors. The sound on her video blew me away and I wanted to share it with you.

Have you ever wanted to protect yourself from too much information? Have you asked people to not share with you test results, or numbers that might blow your mind?

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January 09, 2024

I’m Back

I wasn’t chugging barium in New York. Or going under the knife in San Francisco. I was escaping the daily grind in a seaside village in Mexico. For the first time in two years I took a real vacation. For ten days, I didn’t think about cancer once. Okay, I lied. Once.

Reclusive Geek
The beach in Sayulita, Mexico was the worst of Berkeley and the Jersey Shore combined: Waifs in dental-floss string bikinis, spontaneous drum circles, hordes of white people with dreadlocks, big boned Americans riding on sagging-backed donkeys, locals hocking cheap bracelets, coconuts, and shabby straw hats. Instead, I spent my waking hours lounging on a secluded patio overlooking the ocean with birds swooping above and an enormous stack of books by my side. Bottom line, in Chicago or Mexico I’m still a reclusive geek.

Amid our tropical oasis, I said to Shannon (my husband), “If I ever need hospice, can you scrounge our cash and make it go down in a little rental apartment in Florida with an ocean view?” Florida’s gotta have great in-home hospice right? And hopefully it wouldn’t pan out like my ‘RAI-131 Trader Joe’s flower fiasco’. (Strung out on meds and adamant that only the beauty of flowers would sustain me through radioactive isolation, I blew sixty-bucks on ten bouquets, and crammed them into my studio apartment. Once I was dosed up, the smell and site of them made me want to puke and I chucked them immediately in the trash.) Would I like-wise get to my little hospice huddle in Florida, and think, “Eh? Maybe the damp Chicago winters do feel like a better place to die after all.”

I was ready to spiral into the mind racket of wondering if it’s just creepy-weird that I am a 36-year old woman in a tropical paradise making hospice requests of my husband when death is hopefully not yet knocking on my door. But I stopped myself. “Fuck it,” I thought. I’m a cancer patient. I can think about death whenever and wherever I damn well please. And with that, POOF, the idea of cancer never entered my head for the rest of our trip.

This once again proves my theory that by letting creepy-weird-morbid-downer-cancer-thoughts cross our minds, pass our lips, enter others’ ears, they can release us from the mental torture of this disease and in the end, help us lead happier, healthier lives.

And You?
Whether you are a young adult cancer patient or not, do you let your mind express morbid little thoughts like what if my boyfriend has a heart-attack on the train tonight? Or, who will get my i-pod if I don’t make it home from the hospital? Or do you tuck the mental nasties away in the recess of your mind?

P.S. – Thanks for all of your emails while I was away! I’m glad to be back blogging.

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