Cancer Destroys Relationships—if You Let It

I’ve previously written of the toll that cancer took on our relationships. Some friends genuinely surprised us with their compassion and grace. Many others fell out of our lives as if cancer is contagious. Worst of all, there were family members—hers and mine—who likewise bailed on us.

It hurts and, as Hemingway wrote, we must be clear and honest about what hurts. That is the only way to process the pain. It is also the only way to save the relationships that matter most. 

Happy marriages don’t end in divorce.

Like career setbacks or successes, the lack of children or a house full of kids, poverty or sudden riches, cancer does not doom a marriage to failure. If you were a lousy/selfish/absentee spouse before the diagnosis, you’re probably going to be a lousy/selfish/absentee spouse after the diagnosis. The stress of the diagnosis simply amplifies those failings. 

But this is not etched in stone.

Current scholarly data is a mixed bag when it comes to divorce among cancer patients. What is known is that men file for divorce more often and most often when the woman is the one with the diagnosis. However, even with those rather despicable facts, divorce among cancer patients overall remains on par with overall national divorce rates. The divorce rate among breast-cancer patients (14.5%) trends well below than the national average (44-50%). 

Factors include maturity, economic stability, and education. Most breast cancer patients are diagnosed after the age of 50: mature, fully developed, and well past the growing pains of adulthood. There is (usually) relationship and economic stability that goes with maturity.

Improvise, adapt, overcome. 

Still, mature people are not immune to the sense of shock and fear when a loved one has been diagnosed with cancer. However, a seasoned adult is well-acquainted with the twists and turns life often takes. You work for years to make your bones on a job with the goal of advancement only for the company to downsize, outsource, or be broken up in a leveraged takeover. Or maybe you planned to retire at 55 and travel the world with your spouse but then your kid has to move home after their own setbacks. Grown folks adjust.

Cancer is like that but terrifying.

As (also) previously stated, this blog was initiated to commune with fellow fiction writers and develop my skills through interaction with that community. For those unfamiliar, that means “self-promote and show off my mad skills at writerly excellence.”  I had been studying for a professional certification. There were plans to complete a 2nd degree and then pursue a better paying position at my current employer. Oh, yeah, there was a book in there somewhere I hoped to publish. Since Gaye’s diagnosis all of that seems hollow.

Coping skills—get some

No one is born with a talent for supporting a loved one through cancer. But most of us can learn. You just have to set your priorities. 

When you’re not reading everything you can get your hands on regarding your wife’s condition, you would do well to read some literature on coping skills. Dr. David Burns’ The Feeling Good Handbook was already my go-to guide for “issues.” Burns’ book has been indispensable to me in developing the coping skills necessary for the challenges we both face. You can find The Feeling Good Handbook here.

Don’t lose sight of what matters

There will be days when you don’t want to drop your goals to tend to your spouse’s needs and wants. You will get frustrated with reciting what the doctor said, again. There will be days when you would like to remind your spouse that they understand their condition better than you do. Further, they do not need your hand-holding. 

You can wallow in the shame of those thoughts or you can push past them and be the person she believes you are.

NO ONE SHOULD EVER BE ALONE WITH CANCER. EVER.

See, she does need your hand-holding and your attention. Otherwise she is alone with the disease and the fear. So, she does need you to recite what the doctor said, for the fifth, or fifthteenth, or fiftieth time because when you say it, it’s not maybe misheard or just wishful thinking. It is confirmation of the hope they heard in the doctor’s prognosis. And the confidence they heard in the doctor’s plan. It is hearing that she will live—from you—the person she loves and trusts. Because that is the loving affection that comforts and heals.  

 

We have to take care of each other or risk losing ourselves to this disease even as others drift away from us.

In the days after Gaye’s surgery, radiation therapy, and the start of maintenance medication we settled into the routine of our new life. We walked in the mornings, we worked at our separate stations, (we both work from home two days a week) and we walked again in the evenings. I learned to read her fatigue and I took steps to minimize her exhaustion.

At the end of every day I stretch her hip flexors, her hamstrings, and her achilles tendons. I also stretch and rub her feet. It helps with arthritis-like pain from the Letrozole. More than that, we have a moment of relaxation and affection. We commune as a couple. As, Vonnegut wrote, “a nation of two.”

These days, making Gaye laugh means more to me than getting my little crime diddies out there for fortune and fame. The professional certification will wait. I’ll advance on the job or I won’t. As long as we’re together, nothing else matters.

Key takeaways:

Stay connected, whatever it takes, stay connected.

Stay positive, stay strong.

The photo at the top, the Missus and I in San Francisco c. 2009 and the photo of the Burns book, belongs to the author. The otter photo does not. It is used here for illustrative/educational purposes as covered by the Fair Use Doctrine.

Get Involved—Walking with the Sisters Network

On Saturday, April 29th, I joined my Missus, along with family and friends for a 5K walk organized by the Sisters Network Inc. (SNI). In addition to raising breast cancer awareness, the SNI walk also raises money for African American women to have access to breast cancer screening and treatment. 

Breast cancer is the most common cancer and the second-most deadliest cancer among women in the United States. One-in-eight women will be diagnosed with some form of breast cancer in their lifetime. White women have the highest incidence of breast cancer. Yet African American women have the highest death rate of all women—40% higher than white women.

While Komen (and other organizations) do a tremendous job of promoting breast cancer research and treatment, there is still a long way to go in reaching communities of color. Those communities—black, latino, and Asian—have been desperately underserved for decades. 

Sisters supporting sisters

Karen Eubanks Jackson founded the Sisters Network after her own battle with breast cancer. She recognized a profound need to raise awareness among African American women as well as the need for economic resources. Ms. Eubanks Jackson initiated the first conference to address the impact of breast cancer among African American women in 1999. 

For context, breast cancer death rates among African American women were 35% in 1999. Many African American women who did survive were not offered reconstruction. Many were told it wasn’t available to them. 

As of 2020, breast cancer mortality rates among African American women stands at 26%. African American women are now receiving reconstruction surgery at higher rates than ever before. 

There are numerous factors behind those dramatically improved outcomes. Better testing, earlier detection, improved treatments are all important factors. However, there is simply no overstating the importance of increased awareness. 

Knowledge saves lives. 

SNI continues to partner with physicians, testing centers, and community organizations to raise awareness, promote screening, and assist with medical expenses. 

U.S. Representative Sheila Jackson Lee, (D, TX), 13-year-breast-cancer surivor.

On Saturday, SNI organized with campus organizations, local radio stations, and community leaders to cheer on a couple of thousand women, men, and children, walking in unseasonably cool weather. AKAs, Deltas, and Zetas passed out water, power bars, and participant tags. Representatives from M.D. Anderson Cancer Center, Pfizer, Merck, and many others handed out swag. 

More importantly, there was encouragement and support, for sisters from sisters. 

Walking family, (l-r) our cousin Lauren, Gaye, (my Missus) our sister Bridget, our Uncle Dwight, the author himself, and little man is Nicco.

Three miles (or 5K, you know, whatevs) sailed by as we talked, danced, and joked. Fifteen-twenty-and-thirty-year survivors offered encouragement. My Missus felt the embrace of women committed to life and healthy recovery. If you or someone you love have been diagnosed with breast cancer or are in recovery, please get involved in a breast cancer support group. 

Don’t call it a finish line, it’s a celebration line.

You can find the Sisters Network Inc here.

Stay positive, stay strong.

Round 3—Breast Cancer Recovery

Gaye completed radiation like a champ. Sure, she was emotionally and physically spent. And, ~sigh~, we did take a long weekend trip entirely too soon which compounded her exhaustion but 30 days post radiation, she could not wait to start the Letrozole.

“If it were to be done…best be done quickly,” Shakespeare, MacBeth (aka that dude who never faced cancer care)

Mostly, Gaye wanted to get on with how bad it would be. Letrozole has a reputation for its side effects. More on that in a moment. 

What, where, why?

Letrozole, (generic form of Femara) is a medication with multiple uses but is most commonly prescribed to treat breast cancer in postmenopausal women. In a nutshell, it blocks aromatase which converts androgen into estrogen. In post surgical patients, like Gaye, it is used as a preventative measure against recurrence of breast cancer due to circulatory tumor cells, (CTCs). 

While Gaye was graded as a stage 1b, she did have lymph node involvement. Her cancer was a hormone-receptor positive (estrogen fueled). As a result, Dr. L, the oncologist, took a “belt and suspenders” strategy and threw in a clothespin for “just in case.” Surgery removed the tumor and suspicious lymph nodes, of which two were positive for cancer cells. Radiation of the “field” rendered Gaye’s left breast and remaining axillary lymph nodes non-conducive to tumor development. 

Odds worth the effort

Letrozole was the final weapon deployed. As previously stated there is no current reliable test to detect CTCs, (though a test developed at the University of Houston is in clinical trials). Further, there is no current treatment for CTCs. While that may read bleak, the cells are not enough. Conditions conducive to tumor development and growth must exist. The Letrozole further inhibits those cells from forming by cutting off the estrogen that feeds them. 

By integrating Letrozole into Gaye’s treatment plan, Dr. L calculated her chances of the cancer coming back at five-percent.

So, that’s nice and all…but about those side-effects. 

Below are the most common side effects in Letrozole:

• Bone density loss
• Elevated cholesterol levels
• Hot flashes
• Sleeping difficulty
• Nausea
• Loss of appetite
• Mild (yeah, more on that) muscle and bone aches
• Hair loss
• Skin irritation/rash
• Low moods, depression

It’s hard to shine up this penny, however data suggests that only something like 20% of patients suffer any side effects at all. Which is great unless you’re in the 20%. Then things are not so great.

Gaye had already suffered through a rough menopause after a uterine ablation to counter years of reproductive health issues. The ablation threw her into early menopause along with hot flashes so severe she ended up in the E.R. with anxiety-induced blood pressure spikes, twice. In response, Dr. T, her OB/GYN placed Gaye on estrogen hormone therapy.

Of course the first thing Gaye did when the lump was detected by mammogram was to discontinue the estrogen. Her hot flashes returned with a vengeance. Again, the hot flashes produced crippling anxiety attacks that spiked her blood pressure and drove our oldest cat (bonded to Gaye from a kitten) crazy.

Where healthcare falls down

The attacks were so severe, Gaye requested a prescription for Paxil. Dr. L, the oncologist advised Gaye to request the prescription from our primary care physician (PCP). Our PCP, (brand new to us) was more interested in arguing lab tests with Gaye than providing actual care and shoveled a “wait and see if it gets better” approach. 

This is NOT ethical patient care. This is doctors dodging paperwork to avoid the necessary follow up to prescribing medication like Paxil. It is also another example of how women so often receive deficient care—even from clinicians who are women—than men. I am NOT a cancer patient but deal with a chronic health condition—and I have been offered everything from Paxil to Reese’s Pieces. Different rant, different time.

Holding on for dear life

Already reluctant to take the medication, Gaye reconciled herself to the wait-and-see approach with the idea of initiating acupuncture if her symptoms did not ease off. Further, she wanted to see how bad things might get with the Letrozole before she sought relief. While I disagreed with her, I remembered that Gaye is the patient and her healthcare choices are her own. 

First dose is a doozy

Nearly six months after the fact, Gaye says she still remembers the moment the Letrozole hit her system. She said it felt as if the medication was burning through her body. Any idea that the Letrozole might mute or mitigate her symptoms quickly gave way to cold, hard pain.

Dial it up to 11

The hot flashes continued with as many as 18 or 20 in a day. If that wasn’t bad enough, an old foot injury returned to plague Gaye. With symptoms similar to plantar fasciitis walking became painful and stairs became dangerous. 

By day three, Gaye became stiff in her ankles, knees, and hips with arthritis-like pain. Walking, sitting, lying down all hurt. Not walking was worse, compounding her pain and limiting her mobility.

Gaye read accounts from the women who had quit Letrozole due to the symptoms. Many 40-and-50-year-olds complained of feeling 90-years-old and arthritic. Others said they became bedridden or unable to walk at all. But Gaye could not reconcile herself to the increased risk of not staying on the medication.

Still yet holding on

Gaye continues to walk—two miles—twice a day. When it rains, she does Leslie Sansone routines on YouTube. Walking helps counter bone-density loss. It also helps maintain her cholesterol at moderate levels. Additionally, walking maintains her mobility, eases the tension in her joints, and has even seemed to help with the frequency/severity of the hot flashes.

So goes the gospel song, Gaye is still yet holding on. Literature suggests that the symptoms may be less with the name-brand Femara. It is more expensive than the generic and represented a challenge in getting the insurance to pay for it. Acupuncture also represents symptom relief. We’ll tackle both in future dispatches from the front.

Key Takeaways

• Letrozole use significantly reduces the chances of certain forms of breast cancer returning
• The potential side effects are numerous and some are quite severe
• Only about 20% of patients prescribed Letrozole suffer any effects—so, your results may vary
• Name-brand meds and acupuncture are options for relief short of quitting the medication

Stay positive, stay strong.

The photo at the top, Gaye at the San Francisco Bay, belongs to the author and is used by his very kind permission.

Bells, Bloopers, and Moving On, (amended)

After five weeks of treatments, five days a week, Gaye rang the bell. The completion of radiation therapy is a joyous event for patients and staff. It signifies the end of a journey for the staff who brings the patient through the treatment. It signifies the end of a “leg” of the journey for the patient. 

Joyous

Yes, ringing the bell is a wonderful, joyous event. We relished that day and celebrated with Tex-Mex and laughter. Mostly the laughter was based in the real idea that anything can—and often did—go wrong. 

Who, what, where…?

As I’ve written before, the day of confirmed diagnosis was stressful for everyone. Gaye’s life was turned upside-down. I still struggle for recall of events as I intellectually blacked out and recall only bits and pieces. 

Even our OB/GYN struggled on that day. A dedicated, true physician, Dr. T is well into her 70s. Ours was one of her last consultations prior to retirement. She was loathe to give us the confirmation of diagnosis, loathe to give Gaye the dreaded name for her malady: cancer.

Still, Dr. T pushed forward. She broached the option of M.D. Anderson Cancer Center, (internationally renowned) but she pounced on Gaye’s question about Dr. B. “Oh, she’s the gold standard,” Dr. T proclaimed. “I have her cell number.” 

And away we go!

Just that quickly, Dr. T called Dr. B gave her the fast facts on Gaye’s diagnosis, and elicited a work-in appointment for that day. Dr. T saw us out, passing along a post-it note with the office address. And merrily we went.

About an hour-an-annoyed-call-from-Dr. B’s-office later, we realized that 1) Dr. B has two offices and 2) in her haste to help, Dr. T gave us the address to the wrong one. 

Medical and dental, on surgery day

The morning of our surgery, I awoke well before our 4AM alarm. Nerved up, I rose to put the coffee on…and found a sharp, scaly object in the bed. I freaked out. Then Gaye freaked out. Then we realized it was a cat-tooth. With nary a tooth fairy in sight. After three days of guilt and convalescence, I stole away to take the old man to the vet only to be told that our old boy, Sneaky, has feline tooth resorption, (common in elder-babies) and neglected to tell us before cuddling up next to Gaye. Or, in clinical terms, “chill, this is normal.” Seriously, I dropped two bills for that diagnosis. 

When it rains…the ceiling caves in

Two days (which seemed like two hours) after the tooth fiasco—and five days after surgery—I noticed a water stain on the living-room ceiling. Pretty sure it was the air conditioner drip pan leaking, I spread a tarp over our furniture and put a plastic bin under the now-leaking ceiling with the intent of unclogging the drain when clear of head and unlikely to reenact a Chevy Chase performance. Before I got good and asleep, an eight-foot-by-five-foot section of sheetrock and insulation, along with clumps of soggy schmutz slammed to the floor. I could only hope that Gaye would buy my story about the noise being stomach gas and stay in the bedroom for safety sake.

Perspective and pals

Of course that didn’t happen. But cancer puts everything in perspective. As I mentioned in previous articles, we were blessed by people we never expected to show up. Mr. Garza was just such a person. I called him the first thing the next morning and he was at my door within an hour. Hasan, a former coworker who went into HVAC business (but was booked up with the booming “summer in Texas hell” economy) walked me through clearing the AC drain line. In 12 hours, I had a new ceiling, a cleared AC drain, and I had to chase Mr. Garza to pay him. 

Houston is a subtropical climate after all.

A few weeks later, after surgery and surgical recovery, Gaye began radiation therapy. After some hiccups, anyway. During the second week, Gaye arrived at the center, changed into her gown, and, when called, disrobed to climb on to the positioning molds on the table. 

Then she felt a light breeze. Immediately the staff rushed in, yelling, “Get it off of her, get it off of her!” and “Get her up, get her up!” All while fervently brushing at Gaye’s chest as if she were on fire. When she failed to smell smoke, or bacon, Gaye instantly figured out the issue. “Roach or spider?” she asked “Roach or spider?”

“Un-uh, I ain’t telling you,” the nurse replied.

“Come on,” Gaye said. “I’m in the business, too. Roach or spider?”

“Spider,” the nurse said with a shudder. “We saw it on the monitor.” Followed with profuse apologies. More creeped out than she was, the staff cleaned Gaye down with baby wipes. They were apparently unwilling to replicate the Spider Man experiment. 

Imagination and opposable thumbs.

Then there was the third weekly consultation. It was after an equipment breakdown and everyone was stressed. Gaye brought in cupcakes for the staff and then girded herself for consultation with the doctor. For context, oncology radiologists are more physicist than physician. Lots of gray matter, not a lot of warmth.

So, yeah, formidable and Gaye was ready for Dr. Reptile to pop in and ask if she had caught fire yet. Instead the doc comes into the room licking his fingers. “Sorry I’m late,” he said. “Someone brought cupcakes and I had to have one.” 

Nurse Lauren apprised Dr. Reptile that someone was Gaye. Suddenly, Dr. Reptile warmed up and became forthright, even chatty. Rather than questions and answers, they had a nice, conversational visit.

The patient/doctor rapport is imperative to recovery.

Gaye sailed through radiation therapy. She started the Letrozole, (different article, different time) and began to ease back into her life. Then came the first follow up with the surgical oncologist.

Purr-C did what?!

Gaye felt confident enough to drive herself to the follow-up appointment—especially since she could resume using deodorant. But while setting out her clothes for the day, Gaye forgot that we have a cat who defies the laws of physics. 

Purr-C finds talcum powder when we have NEVER bought talcum powder. He finds shiny ribbon packed in the gift-wrap closet, behind the winter wardrobe, (we are in a sub-tropical climate) and on the other side of the electronics we can’t find remotes for and/or for which they no longer make batteries. Oh, and he LOVES to lay on Gaye’s clothes, (mostly cashmere, silk, or linen).    

“What kinda freaky sh—tuff have you been doing?”

So, Gaye arrived at her appointment. She disrobed, and awaited the doctor. But during the exam, the doctor brushed Gaye’s incision site. Then she got her examination glasses, (think Johnny Depp in Sleepy Hollow) a piece of gauze, and went to town. Shocked to attention, Gaye feared an open suture line, then she thought the doctor might have felt another lump. After several seconds, Dr. B looked up and said, “Gaye, why is there glitter on your breast?”

Imagining a “Your cat got into glitter? The source of which you don’t know? And then onto your clothes?” Line of follow up questions, Gaye ignored her. Undeterred, the doctor laughed it off.

Happiness is a full belly… even if it is someone else’

Gaye laughs about those incidents…now. But in the depths of radiation therapy it was stress, stress, and more stress. However there were beautiful moments as well. Like when we discovered a litter of feral kittens living in the massive live oak behind the radiation center. We began taking food for the mom and the feral kittens. It made us happy to watch mom scarf down the food and then the kittens scuffling and tumbling all around her. 

It became Gaye’s happy place during the bad days.

Key takeaways:

• The dark days do pass
• It is imperative to stay positive
• A sense of humor helps
• Sometimes you are your cat’s joke
• A happy place is indispensable

Stay positive, stay strong.

Radiation Pt 3: Is Something Burning?

After almost two weeks, Gaye’s incision site closed up and she was able to start radiation therapy. To say she was relieved would be an understatement. Aside from immediate peace of mind hitched to the radiation therapy, there was also the idea of starting her maintenance meds at the other end. The sooner she wrapped up RT, the sooner she could start the Letrozole.

Gaye’s first day of treatment was nearly a non-event. As promised, there was no bother with the front desk. She proceeded to the back, changed into an examination gown and waited for the nurse to call her into the treatment room.

With the positioning molds in place, Gaye breezed through. All together, she was in and out in well under an hour. Days two-through-four went just as swimmingly. She even considered cutting me loose from driving duty. 

Kindness comes in all forms but the sweetest is in the form of gratitude

Another breast cancer survivor who had received treatment at the radiation center felt immense gratitude. She wanted to extend the grace she received to other women. A business owner, she had no clinical experience or time to volunteer. Still she wanted to make other breast-cancer patients’ day a bit brighter and maybe give them a smile. It just so happened that her business was all about smiles. So, every Thursday the woman brought in flowers from her floral shop for all the radiation treatment patients. Thursday roses, carnations, and happy sunflowers waiting at the end of therapy made the week that much brighter.

Friday was no joke

Day five landed on Gaye with both feet. Most people were getting zapped one or two times (angles). Gaye was zapped nine times. The much-anticipated fatigue hit her with five days worth of exhaustion. She managed a bath and part of a meal (in bed) but Gaye was out by 5PM. She did not wake until 9AM the next morning. She would sleep 12 and 14 hours a day the entire weekend.

Best laid plans and flexibility

So, yeah, don’t drop your driver but also, be prepared for last minute changes in plans. Week two started out just as week-one and Gaye felt confident in knowing to expect an exhaustion beat-down on Friday. As we pulled into the driveway on Tuesday, however, Gaye’s phone dinged. 

The machine was down but repairmen were on site. There was no estimated completion time. Without missing a beat, Gaye rescheduled and we went on with our afternoon. When I asked her about it, Gaye said she knew the center would be backed up and it was better to add an extra day onto her plan than wade into an already stressed environment.

Friends bearing gifts

Wednesday was a stressful day for everyone in the wake of the machine breakdown. Gaye left with a plan. When we returned on Thursday, (the day of her weekly consultation with the doctor) she took in cookies from Crumbl. Not only did it make the office staff’s day but even the doctor, (some guy filling in for Dr. H) expressed his gratitude and took extra time with Gaye and her initial questions.

Follows instructions and plays well with others

Satisfied with the condition of Gaye’s skin, he commended her on the minimal external signs of radiation burns. Likewise the nurse asked Gaye which product she had decided on for her skincare. Gaye said she had opted for the Aquaphor based on things she had read on the blogs.

The nurse nodded. Cindy said most of the women opted away from the Aquaphor because it is a heavy ointment (as opposed to a light cream or lotion) and they thought it felt greasy. Gaye attributed the preference to cultural differences. 

More white women are afflicted with breast cancer than women of color. Most white women avoid greasy skin-care. African-American women are typically raised to seek the most moisturizing skin-care product they can find. Greasy is not a dirty word.

By the end of week three, Gaye’s skin had turned deep burgundy from the radiation treatments but had not blackened as she had been warned. She also said aside from discomfort, akin to sun-burn, fatigue was the biggest challenge. And a challenge it was. 

There will be weight gain

Also by the end of week three, the days of fatigue ganged up. Gaye struggled to get from the passenger seat to the bath to the bed. At least three nights a week, she ate dinner in bed. Just as often, she would be knocked out by the time I got the dishes washed. Gaye had two go-to meals during this period, chicken soup with garlic toast and buffalo cauliflower. 

While the soup is not high in calories, the garlic toast is bread loaded with butter and parmesan cheese. Likewise, the cauliflower (cooked in the airfryer) is not outrageous but the buffalo sauce is butter-based and the ranch dressing is not free, either. In short, this is not the time for diets and calorie-counting. Expect weight gain.

Activity, activity, activity

Gaye and I continued to walk in the mornings as often as her energy/fatigue allowed. Those two-mile walks gave her the stamina to just be “tired” at the end of the day. It doesn’t sound like much but there are stories of women requiring IV fluids for dehydration and exhaustion. Activity remains a key component to recovery.

Patience for the patient

I paint a rosy picture but trust, there were rough days. There were days when Gaye was withdrawn. There were days when she was short-tempered and then cried in complete exhaustion. 

Please remember that the person you love is in pain. She is dealing with trauma and a new, quite shaky, reality. If she gets “bossy” remember how much she does NOT control right now. Get selective in your hearing. If she snaps, roll with it and keep pushing toward the goal of healing, together.

Real talk, real funk

As stated previously, Gaye was instructed to wear no deodorant or powder on treatment days. For those keeping score, that means five days a week without deodorant, in Houston, (average summer temp is 91f with 80% humidity). As if that wasn’t enough, Gaye’s body was still adjusting to the hormonal changes from her estrogen abatement. 

Another radiation therapy patient put in perspective when she asked Gaye, “Do you stink? Is it just me? I’m trying everything including lemon juice and nothing helps.”

So, your dearly-beloved other is going through some things. Be patient, be there, the stress, like the treatments, and the funk, will pass.

Key takeaways:

• Radiation therapy is fast, the effects are not
• Look for joy—jokes, comic strips (thanks Jennifer), dinner in bed—wherever you can find it
• Moisture, moisturize, moisturize—your skin will thank you for it
• Cancer recovery is not the time to count calories
• Neither is it the time to veg-out—stay active
• Patience is key, your loved one will need it, so will you
• Really, make peace with the funk situation—it, like radiation therapy, is temporary

Stay positive, stay strong.

The photo at the top, Gaye at the Mumm Winery in Napa Valley, c. 2010, belongs to herself and is used with her very kind permission.

Radiation Pt 2: Angles and Setbacks

So, why radiation? 

After the last post it occurred to me that while I gave a pretty good detail of our transition from surgery/recovery to radiation, I skipped a key component. I completely omitted the big part of that transition: why? I mean surgery removed the cancerous tumor. Why was radiation necessary?

In many stage-one/grade zero cases, cancer surgery is the extent of treatment. No follow-up treatment necessary. Other types of cancer, dependent on stage/grade require presurgical treatment. Radiation or chemotherapy (sometimes both) is employed to fight the cancer. 

Each type/stage of cancer mandates a different treatment

However in most instances, (due primarily to breast cancer detection challenges) follow-up treatment is necessary to insure that no missed cells (or circulatory tumor cells) develop and lead to metastasis. The type, stage, and grade of cancer are the factors that determine patient candidacy for radiation or chemotherapy, before or after surgery.

As previously stated, in Gaye’s Invasive Ductal Carcinoma tumor and associated lymph nodes were removed in surgery. The plan of care called for a regimen of aromatase inhibitor to follow surgery and further reduce the risk of recurrence. Indeed, when combined with surgery for the maintenance medication reduced the risk  to 5%. Still, the lymph node involvement represented additional risk. As a result, the oncologist and surgeon recommended radiation therapy.

Belt and suspenders

Radiation is a one-two punch on cancer. In addition to shrinking tumors and killing existing cancer cells, radiation creates a physiological atmosphere hostile to cancer cells for months after treatment. Which means that months after treatment, the radiated tissue remains inhospitable to cancer cells that may circulate through.

All radiation therapy is not the same

Again, depending on the type of cancer, the radiology oncologist will opt for one of two treatments. Brachytherapy is for the whole breast and typically means the placement of material that radiates the entire area. But Accelerated Partial Breast radiation is a targeted approach to focus on the tumor site and a 1-2 cm margin. This is achieved using a beam projector, similar to an X-ray machine.

All lump locations are not the same, either

The left-sided tumor is difficult to treat with radiation due to proximity to the heart. Further, plotting an angle to spare the heart risks the lungs. The challenge, then, is to radiate the tumor while avoiding the vital organs. 

Game day: bring a friend

As instructed by Cindy, Dr. H, and the RT Answers video, Gaye arrived for her simulation with a friend, (yes, I’m her husband and her friend). Thankfully, I brought a book, (yes, a MacBook is a book). The simulation took two hours and that was on top of the wait, dressing, and undressing. By the end, Gaye was exhausted and in pain. It was the closest I saw her come to taking her post-surgical painkillers. Instead she sweated it out.

No pain, no gain

To be clear, Gaye’s pain was due to fatigue from the positioning and still-healing surgical incisions, not from the procedure. She said nothing about the CT scan itself was painful. The time factor was related to programming the machine to the positions Gaye had to maintain as well as for the molds to be placed which were intended to help Gaye hold the same position each time.

Measure twice, zap once, or something…

In total we were at the radiation center for two hours. But it was done and Gaye was increasingly anxious to get the actual treatments started. Unfortunately, Dr. H was not entirely satisfied with the angles and asked Gaye to do another simulation to validate his calculations. 

“Well begun is half-done,” -Aristotle 

The second simulation went much faster. There were no fewer people or additional machines, but having done it before, Gaye knew what to expect and how to work with the process. We were out in under an hour. Best of all, with less stress (of the unknown) Gaye was less fatigued.

“Best laid schemes o’ mice and men…”

Once Dr. H was satisfied with the angles and his calculations, Gaye was given a start date for her radiation treatments. Unfortunately, one of her incisions opened. As previously mentioned, radiation treatments affect the skin and therefore, healing. Gaye had to postpone her treatments pending wound closure.

Take aways:

• Every type and stage of cancer is different
• Each difference impacts the plan of care
• Patience is the most important thing in the process
• Experience makes the task easier

The photo at the top, Gaye in San Francisco c. 2010 belongs to herself and is used by her very kind permission.

Radiation Slays Cancer, Knowledge Slays Fear

Thirty days after surgery I drove Gaye to her consultation with Dr. H, the radiation oncologist. Flushed with good vibes from her oncology and reconstruction follow up, Gaye was upbeat. We had benefited from a lot of good news. 

The lymph-node biopsy had revealed two cancerous lymph nodes (which can be problematic in detecting malignancy). Additionally, Letrozole, the aromatase inhibitor prescribed as a maintenance medication would ultimately reduce recurrence risk to 5%. The oncologist would reassess at the five year mark.

Further, Dr. B’s excellent repair work benefited Gaye through good lymph fluid return and she bore no signs of lymphedema. No sleeve to prevent fluid-related swelling was needed. The walking Gaye had engaged helped return almost all of her range of motion.

Her incisions were healing nicely with no hypertrophic (bulging) scars. Things looked good. Of course I’m typing this from my perspective. I wasn’t the one facing radiation treatments just after getting my wind back from surgery.

Location, location, location

While Baylor College of Medicine’s Breast Center is still building out to include an in-house radiation center, patients are referred to a radiation center on the fringe of the medical center. Free parking, easy navigation in/out, and dedicated services are a big bonus. Still, having this service in the same building with the rest of the breast center will be an enormous benefit to patients.

At the outset, I have to say that the compassion and professionalism we witnessed at the radiation center went way above what we expected from an out-patient facility. The center provides care to patients battling many different forms of cancer. However the staff is top-notch and well aware that they are caring for folks who are often going through the worst event in their lives.

Cindy conducted our initial consultation. At first I worried about a personality clash. She seemed brusque and matter-of-fact but that was just until she got us to the examination room. Then she bloomed with care and consideration. 

First she presented Gaye with a pink care bag that contained a resource manual, and three skin moisturizers, and coupons for each moisturizer. Then she gave us the full-nickel orientation:

• Radiation causes skin burns (more on that in a moment)
• Pick the moisturizer that works best and stick with it—but don’t mix/alternate
• Radiation causes fatigue and the fatigue is cumulative
• On the day of treatment, no deodorant or powder (to avoid potential skin irritation)
• Hospital wipes are okay 

For context, (if you’re wondering about the last two) the average summer temp in Houston is 91f with 80% humidity. Folks get funky. 

Brass tacks:

• The initial consultation with Dr. H was a basic “what to expect” session
• Next was the simulation, (a dress-rehearsal with a CT scan) to gauge angles and positioning
•  It would take two weeks to formulate the plan (based on angles and radiation dosage)
• A nuclear physicist does the radiation dosage calculation, (position of heart in relation to the breast tissue)
• Treatments would be 5 days/week for a total of four weeks or 20 treatments
• Each treatment would take between fifteen and 20 minutes
•  Gaye would see the Doc at least once a week to assess radiation burns
• Pneumonitis (lung irritation similar to pleurisy) is a risk with radiation treatments to the upper chest
• Rib-fracture is another risk as is nausea
• Gaye would have to wait at least two weeks post radiation to start the Letrozole maintenance medication

Cindy also gave us a tremendous resource website: rtanswers.org that includes videos and stories.

Bad information and bad understanding is worse than myths and superstition

Gaye was told by multiple people, patients and clinical staff that radiation would turn her skin black as if she were sunburned. Cindy said the same, until Gaye drilled down on the question: if radiation burns skin like a sunburn, then wouldn’t the color change be dependent on pigmentation? Gaye’s base pigmentation means that when she suffers sunburn, she turns burgundy, (just as a caucasian person turns red). Cindy was unable to answer the question but to her credit, she didn’t disregard the question either. She made sure it was at the top of Dr. H’s notes.

“Are those Rothy’s?”

Right through the door, Dr. H flipped all ideas of how a radiology oncologist looks/behaves. Built like a former football player with a “Dad” demeanor he started by asking Gaye about her shoes. He had a pair of Rothy’s (cute, colorful loafers made of recycled plastic from water bottles) and loved them. Fashion is Gaye’s happy place and she takes pains to ensure her appearance reflects the joy that fashion imparts. Those two minutes of conversation completely diffused the tension in the room. 

Dr. H gave us a brief overview of the use of radiation therapy as supplemental breast cancer treatment. While the clinical efficacy of lumpectomy and mastectomy are nearly the same, including the risk of CTCs. Like the cells that were caught by Gaye’s lymph nodes, any cells that escaped excision could result in recurring cancer. Targeted radiation cut that risk down. 

Dr. H planned to target the axilla lymph nodes, (armpit) superclavicle lymph nodes, (collar bone) and the internal mammary lymph node (just what it sounds like). But if Dr. H thought that was all there was to it, he hadn’t treated many nurses like Gaye. She had researched and she had questions. Thankfully, he had answers.

• The treatment plan of radiation versus chemotherapy, like the choice of lumpectomy versus mastectomy is dependent on cancer type and staging
• The risk of lung and heart damage from radiation were both present however, the angles and dose would be calibrated to reduce the risk while providing maximum benefit
• Yes, darker pigmented people may darken deeply
• No, the targeted area would not, (based on Gaye’s base pigmentation) turn black but would darken
• Typically, skin returned to base color around two months after therapy
•  As previously addressed, (with Dr. M in the reconstruction consultation) Gaye could expected shrinkage in her radiated breast
• The possibility of skin damage at the incision site existed and if it occurred, would delay treatment
• The only other risk Dr. H could identify was that as fun as Rothy’s are, I would probably end up buying more for Gaye

If these sound like random concerns, they are in fact based on clinical findings for why many women opt-out of radiation therapy. Bad information, bad understanding, and unfounded fears are deadly. Gaye wanted the science-based information to make her own determination.

Takeaways

• Research, (I’ve included links to reputable, clinical websites in previous articles)
• Ask questions
• Understand the science to trust the science

Stay positive. Stay strong

The photo at the top, Gaye, in Philly, c. 2016 belongs to herself and is used by her very kind permission.

Merry Christmas to all Who Observe in Whatever Way You Observe

Happy Hanukkah to my friends who observe. Ubermensch Ben Grimm, courtesy of the King.

Monica Nzegwu: Lifeguard

Gaye, Monica, and I at Monica and Clement’s 20th Anniversary bash. Monica was one week post-op in this photo.

As the clock ticked down to radiation treatments, Gaye continued to recover from surgery and rebuild her strength. Her support network of friends continued to check-in. Their calls and texts kept the anxiety and self-defeat from eating her alive. 

Nothing to it, right?

It is so easy to fall into despair, especially when reading the heartbreak so many women endure on this hard, hard road. In fact the breast cancer forums include a contingent of women who take issue with the term “survivor.” So, it is a tough road and, yes, the calls and texts were a lifeline. One of the most vocal supporters had traveled that road before Gaye. 

Once upon a time…

Two jobs ago Monica was a new director in an almost-all-white hospital business office. Gaye, the only other woman of color, had been on the job six months. But due to latent shyness Gaye hadn’t made any friends. 

Then, one day she heard a group of women negotiate where they would go for lunch. Used to being next-to invisible as the rare woman of color in a hospital business office, Gaye focused on work and minded her own business. Then, out of nowhere, a woman stuck her head into Gaye’s office and said, “We’re going to lunch. If you are coming, get your purse and let’s go.”

At this point they hadn’t had a conversation. In fact Gaye barely knew Monica’s name. But who could turn down an invitation like that? From there Gaye and Monica became fast friends, talking daily. 

Then the hospital they worked for began to falter. Payroll was missed, then delayed, and then missed again. In the mad dash for the door, everyone said they would stay in touch. But Gaye didn’t expect much. People have lives. Everyone is busy. 

Even in a medical town like Houston with hundreds of hospitals in the surrounding county, job changes shake folks up. Licenses, degrees, and specialized skills/experience help a bit. Still, human nature is to keep your head down and hope for the best for everyone else.  

Friends look out for each other

But Monica isn’t the head-down type. She called to see if Gaye found something. She pointed Gaye at a position at the hospital where she landed. Soon enough, Gaye had a job right back with her friend. They fell in together just like old times. She listened to Gaye vent about the other coworkers and Monica had Gaye’s back against false-friends.  

Then Monica moved on to a new job and Gaye stayed. They remained friends, talking regularly. It’s a big deal because Gaye is not a telephone person and only seldom talks to me on the phone.

Party with a purpose

When Monica invited Gaye and I to celebrate her 20th wedding anniversary, it was a no-brainer. Monica was so much fun to hang out with, who wouldn’t want to party with her and her family?  

And the party was an absolute blast. A ball of energy, Monica met us at the door before flying off to check in on-each-and-every guest, among hundreds of people. She wanted to be sure everyone had a good time—including herself. 

Who has time for that?

About one month after the party Monica said she was in breast cancer treatment. At the time of the party she was just one week post-op from a double mastectomy. When Gaye pressed why Monica hadn’t told her sooner, hadn’t allowed Gaye to do more, Monica brushed her off. With friends and family flying in, many from across the globe, she had been preoccupied with the party. 

Smiling through the pain

But the signs had been there. We could see them in hindsight. Beaming while greeting her guests, Monica still had the IV port. Pain still peaked around the edges of her gait. But Monica had people to talk to, many she and her husband, Clement, hadn’t seen in years. When she wasn’t working the room, she was on the dance floor. All night.

Gaye was one of the few people Monica confided in at all. But Gaye’s experience with breast cancer as a clinician was limited. There was no one in her family with breast cancer. The diagnosis scared the hell out of her. 

Monica took it in stride. Too optimistic, too busy, she charged on. Gaye did what she could to support her friend.

Their conversations slowed down a bit. Monica had good days and a lot of bad days. Chemo kicks cancer’s ass but it kicks the patient’s ass, too. Monica struggled with chemo and Gaye struggled with what to say and do. 

Darkest before…

Then at the bottom, when things looked dire, Monica didn’t want tears and she had no patience for sympathy. Monica wanted to find out what was going on in Gaye’s office (where she knew everyone). She wanted to gossip and laugh. She wanted to talk about anything but cancer.

Gaye texted her. Memes and jokes seemed superficial but you do what you can. She asked Monica what we could bring her to eat. Monica said she could eat barbecue and Gaye leapt to do something for her friend. Gaye continued to offer anything we could do for Monica. Then inspiration hit. If we baked a pan of ziti that would be one less meal Clement would have to cook for the family. 

And we visited to lift her spirits. Mostly that consisted of her talking and laughing with Gaye and us listening. None of it seemed enough. 

The chemo weakened Monica and turned down her volume. I can’t lie, I worried for her and her family. Survival is not guaranteed. We gave Monica space and time to recover her strength. 

After some worrisome days, their conversations resumed. At that point Monica did discuss her journey. She wanted to talk about the end of chemo and her battle back. As the conversations progressed they talked less and less about cancer, chemo, and recovery and had more “what I’m going to do when…” conversation. 

I overheard bits and pieces. Gaye would recap with me to catch up with Monica. But the day I heard them talking about designer handbags, when I heard the excitement in both their voices, while they looked at bags online, I knew Monica was on the comeback.

The world turns

When Gaye was diagnosed, Monica was one of the first people she called. They cried together as Monica re-lived her own battle while talking Gaye through hers. When Gaye got low, Monica wouldn’t let her dwell there. She continued to call and text. 

Gaye said that when Monica was sick, she felt like the phone calls and texts, food and visits, all seemed meaningless compared to what Monica faced. But in the wake of her own illness, Gaye says she now understands how much those gestures matter. Those moments, those conversations are sustaining.

As with Monica. Gaye went through a period where she was too weak for conversation. Too fatigued to respond to texts. But Monica never forgot Gaye. I believe that encouragement helped Gaye with her “what I want to do when…” plans.

Rough days gave way to less-rough days and then to good days. Gaye began to return calls and catch up with friends. When I heard Gaye laughing with Monica on the phone I could breathe. But when I heard them talk about handbags, I knew Gaye was on her own comeback. 

Monica showed Gaye how to live through the fear and smile past the pain. More than a friend, she was Gaye’s coach fighting cancer AND living while doing it. She remains the single biggest influence for Gaye while maintaining perspective. 

Takeaways

• You never know who your guide will be. They don’t always know, either.
• Pay it forward. You learn a lesson to pass on to someone else.
• Keep living. Keep learning. Keep reaching out to others.

Stay positive. Stay strong.