If not redily apparent from the rate of new posts, we’ve had a few rough days. Sure, we try to keep things positive and moving along but, of course, cancer is no joke. And there are times when the good days seem far/few in between the bad days.
But today we went for Gaye’s post-op reconstruction appointment. It was scheduled for 08:30 which is no easy hour. On the upside, the stars aligned for us today. Our referral landed in time for our appointment. Further, we had a credit from a previous payment made by the insurance company. Best of all, Dr. M, the plastic/reconstruction surgeon is very happy with Gaye’s healing.
Not done yet
Gaye has been suffereing with pain from one of her incision sites and hoped the good doctor would ease her discomfort with a procedure or shot of steroids. However, Dr. M. stated that the offending site is still healing. Hence a bubble and the needle-stick pain. He urged her to continue massaging the scar and to continue use of the silicon tape that reduces the scar and smoothes it to the surface.
We go back in six months and if she is still suffering with pain, Dr. M will perform a complete revission of the scar.
Breakfast with a friend
Chilaquiles a la Irma
Another upside to an appointment that early is having a choice of meals after. Gaye wanted to go to Irma’s. Recently featured on Bravo’s Top Chef, Irma Galvan is a Houston institution. Her original restaurant, (in a little metal-sided building) is Tex-Mex comfort food with DEEP roots in Mexican tradition.
There is no menu at Irma’s. They tell you what is available based on what came fresh from the market that morning and you make your selection. I opted for the chorizo and eggs (top) and Gaye had the chilaquiles, (corn tortillas deep fried and sauced with tamatillo, onions, garlic, jalapeño, and cheese—photo above).
Both plates were served with excellent beans and potatoes. Most importantly, everything at Irma’s is served with Irma’s love. She loves food, she loves feeding people, and she lives to make everyone feel welcome. I can’t help but think it was just what the doctor ordered.
(l-r) Yours truly, Chef Irma Galvan, and Gaye, my Missus.
More than just breakfast, decompressing over coffee and eggs in a warm, inviting atmosphere is part of the healing process. Do not be in such a mad dash to battle cancer that you forget to savor the moments of peace. It is key to your wellbeing.
Stay positive, stay strong.
All photos belong to the author and are used by his very kind permission.
As the days immediately after surgery turned to days awaiting radiation, Gaye became restless. She worked but felt like she accomplished nothing. She slept but remained tired. She moved but felt like she was going nowhere. Some of it was pain and recovery. Mostly, it was anxiety.
Yet, over and over again, the warm embrace of friends that became family sustained her through the apprehension and tumult. Those gestures that we all-too often take for granted gave Gaye a sense of refuge. They became tangible expressions of love.
Acts of kindness is love in motion
From La Patisserie in Austin
Our dear friend Minh continued to check on us. As previously mentioned she left absolutely wonderful macaroons for us in the middle of the night just because she thought Gaye would like them. While still slugging away on the bar review, she dropped by cookies from Crumbl. That’s love, right there.
Cookies from Crumbl
Grace is often found where least looked for
Surprising as it may be, I’m not a “fun” coworker. I show up ahead of time, do everything asked of me, and leave (on time). In short, I work to support my life. I do not live to support a job. Likewise, Gaye is a naturally reserved person and has similar distance with her coworkers. Still, we arrived home from one errand to find two (2) separate deliveries from Edible Arrangements. One from each set of coworkers.
More than a nice daily treat of fruit, the arrangements conveyed care and concern that transcend differences. Because they were delivering two arrangements, the folks at Edible Arrangements threw in balloons and an Edi bear. The balloons represented a daily reminder of consideration from people we hardly know. Bonus points: the Edi bear is smaller than the teddybear Gaye had used for a seat-belt cushion and therefore worked better.
Reach out and touch someone, really
Our dear friend Natalie called Gaye every couple of days. More than just two nurses talking, it was communing and supporting in the most immediate and vital way—listening and discussing. Ann, texted and called Gaye to talk even as she grieved her dear husband. Together they rose above their pain for a moment to discuss politics or nutty things in the news. Likewise, our Uncle Dwight and Gaye’s brother Todd texted us regularly.
Shelly started out as MY writing buddy. Then one year she invited us to her annual halloween shindig—a fun costume affair without the typical booze/debauchery. Gaye took to her immediately. Shelly’s texts lifted Gaye’s spirits immeasurably. The same is true of my brother, Paul and his husband Rick’s phone calls and meme-texts. Our neighbors, Dawn, and Claudette, both nurses, (one full-time and the other retired) texted every couple of days, to check on us. More than just an ad slogan from a million-years ago—when you text or call the recovering patient, you truly are touching their heart.
Practical magic
After a day of medical appointments and errands, we arrived home to find Linda waiting for us. Still a surrogate mother to Gaye, Linda and her son, (our dear friend) Michael brought a bouquet of flowers for Gaye. As well as a rack of barbequed ribs.
Both gifts lifted Gaye’s spirits. The roses went on our dresser where she could see them first thing in the morning and last thing in the evening. The ribs…well, the ribs really don’t need much justification. They’re simply wonderful. Those ribs also spared (puns) me from cooking a meal and cleaning up after.
My coworker Kim gave us a blanket from her prayer group. That we continue to cherish both the blanket and the compassion behind it.
The thought does count
It’s not just flowers and food and stuff that count. It is certainly more than stuff. Monica, herself a breast-cancer survivor) proved more a sister than a friend. She took many phone calls, at all hours. Those calls were a lifeline when the anxiety was standing on Gaye’s neck.
My scribble sibling, Jennifer sent a collection of comic strips for Gaye to read. Our friend Hung sent a warm-toasty package of self-care. Gaye’s cousin Sandra made the drive across town to cook us a meal and offered to clean our house. There is no over-estimating how much Luis Miranda’s love and compassion both compassionate haircare and in weekly texts.
My scribble sibling Fiona, who hosts my crime notions on her blog, set up a beautiful space for peaceful contemplation in Gaye’s honor, complete with gorgeous orchids. Kari, one of my oldest friends, reaches out on social media to ask about Gaye, weekly. For that matter, every single Facebook like and comment on my posts get on social media is an endorphen shot in the arm for Gaye, (who does not have a social media prescence of her own).
The point here is contact. If someone you love is battling cancer—or any other healthcare challenge—you may feel yourself pulling back. Don’t do that.
Doubts grow with time
What do you say to someone who might die? How do you begin to express your feelings, especially if there has been time and distance between you? What if you can’t do anything for them?
Greeting cards are still a thing. Many of them have a message already written. Our friend Sharon send a get-well card before and after surgery. Receiving those cards made Gaye’s day.
Nothing shrinks the distance like hearing a friendly voice. It’s been awhile? Guess what, friends and greetings are always RIGHT on time. By reaching out to the person (who often feels all alone in their trials) you are doing EVERYTHING for them. You’re saying, “I’m here. I care about you. You’re not alone.” That is life itself.
Movies and television shows will make you think that surgery is the finish line and everything after is just “fast-forward.” Your results, of course, may vary. Gaye slept nearly 20 hours after her surgery, waking only to take a bit of soup, stumble to the bathroom, and change out the ice packs in her post-surgical bra. This is when those bras with the pockets for ice packs are imperative. They really help with the incision pain.
Water is life
If you’re close support for a post-op patient, make sure your patient has water at the bedside. Encourage them to drink often. Be handy to help them to the restroom. The last thing your post-op patient needs is dehydration or a fall.
Change is good
I previously mentioned post-surgical bras, (front closure with good compression/support). You’ll want to have a change of bras, if not several changes, on hand. The hospital sent Gaye home in one but she bled through it the first day. The post-op patient has to stay in the bra 24/7 and a change-out does wonders for comfort.
Multiple sets of PJs, (along with the spare sheets) will allow you to wash and change out daily.
I neglected to mention it last week but make sure you have the doctor’s staff call in the prescriptions in advance. No jokes, you want those pills handy when the pain shows up. We didn’t need them after the first day but I’m glad we didn’t have to go to the pharmacy on the way home from the hospital or worse, run to the pharmacy the day-after.
Everyone feels better after a clean-up
I also forgot to mention the need to anticipate special challenges in bathing. Like many people, Gaye enjoys a hot bath to soak the day’s stress away. However that is not possible with recent surgical incisions.
Our solution was a small bathing stool under the shower. The stool allowed her to sit safely under the shower. The first day after surgery, Gaye could manage the basics of bathing. I simply helped with the rinse-off and dry-off as she could not raise her arms.
There are multiple brands and styles but Gaye opted for an all-wood stool from Ecodesigns. It is less institutional. It is smaller than most other stools, (again, choose based on your needs). It is also easier to handle. Downsides: assembly is required and because it is wood, you have to towel it off after every use to avoid mold/mildew.
Follow instructions, seriously
Wound care was much easier than we expected. There were no wound drains to empty, which was a blessing. There were no bandage changes. The doctor covered Gaye’s incisions with Steri-Strips and the instructions were simple and pointed—allow the dressing and strips to come off through normal wear—pull nothing off, put nothing on. Gaye did suffer with some minor skin-irritation from the Steri-Strips but they peeled away in the shower in a matter of days.
Walk on
By the second day Gaye knew she had to move. Post-surgical instructions included a directive to get out of bed every 90 minutes. With me hovering, she shuffled around the house, took a shower, and then back to bed. She did manage to do some work on her laptop and watch some YouTube videos. Then she slept, somewhat better, for the rest of the day.
On day three, she was up and determined to move more. We made it to the end of the drive and back. Gaye’s appetite returned in full force with the walk. She snacked on Cheetos, asked for garlic toast to go with her soup for lunch, and she ate an entire grilled-cheese sandwich for dinner. That is on top of the stroopwafel she had with her morning coffee.
By day four she was halfway down the block. This may all seem like trivial details but it is the difference between a smooth(er) recovery and some REAL aggravation. Blood clots are a serious issue that plagues many post-surgical patients and can lead to re-admission to the hospital.
Exercise is the best preventative measure. You don’t have to join a gym. Just walk.
Sleep patterns may have to change
Gaye slept upright in bed, propped up with pillows. Her sleep was, as previously stated, fitful. While we normally sleep cuddled up like kittens, that’s not an option with surgical wounds and I feared hurting her. I considered sleeping in the living room.
But there was no way. If she fell trying to get to the restroom, or trying to reach the water bottle, we would be headed to the ER. Besides, you can’t sleep if you’re worrying from a room away. So, yeah, it’s a struggle but you will sleep. You’ll learn to nap, too. The point is, with some adjustments, you’ll both manage to sleep.
ROAD TRIP!
By day five Gaye was walking around the block. She had all the soup, Cheetos, and grilled cheese she could stand. She wanted a burger. My good friend, Fulton, suggested a place and off we went. As good as the food was—giving Gaye an opportunity to dress in more than PJs or sweatpants and going for a drive—getting out of the house did wonders for Gaye’s spirits.
A burger and parmesan fries from Christian’s Tailgate in Houston.
Best friend with a salon chair
Luis Miranda is an angel, sent by god—in the most practical terms. He washed Gaye’s hair the week after surgery. That’s a big deal because the patient won’t be able to and even if she doesn’t mind you washing her hair, it is not the safest thing to do without a salon chair/salon sink. Luis made it clear that no appointment was necessary. All Gaye had to do was call when she needed him. The conversation and event of getting out represented ancillary benefits.
Patient-support guidance suggested
The downside of the registered nurse researching her care is the onslaught of negative stories. Gaye found a great deal of useful (general) information. But the stories from women who did not get care soon enough or received substandard care or who faced recurrence rattled Gaye’s tender nerves which exasperated her anxiety.
The presurgical medication Gaye took resulted in a resurgence of hot flashes, accompanied by anxiety attacks that beat up on her emotions. The stimuli from YouTube, breast-cancer articles and forums specifically the gloomy-to-fatalistic stimuli began to adversely affect Gaye’s attitude. Getting out of the house for lunch, for a ride-along to the grocery story—hell, to walk around the block became an instrumental part of her self-care.
Takeaways:
Have what you need on hand
PJs, at least two sets so you can wash and change out daily
Sheets, same as above
Bath stool, your fatigued loved one will thank you
Snacks—bite size candy, gummy bears, Cheetos
Water bottle, (ideally two so you can always have a clean one on hand)
Support
Caregivers have to learn how to nap
Even if your loved one says they “got it” stay close to be sure—I stood outside the shower curtain to be sure
Have a support system of friends—facebook/twitter counts—to talk with
Strategies to mitigate discomfort
There is no pride in relieving pain, anxiety, or just the itchie-owies—be prepared to make a fool of yourself
I made up songs about our cats and then danced the cats at the end of the bed (yes, there was treat-bribery involved)
I read her fashion books to her and described the dresses—Yves Saint Laurent remains a fan favorite
I made up stories about shopping and where we would go to eat and cool (temperature) places to go
Don’t sweat the small stuff—the lightbulb burned out, you spilled the milk, out of whiskey
The patient doesn’t need to know
Exercise
Start by walking around the house
Moving from the bed to sit up on the couch counts
Graduate up by walking to the end of the drive, or down the apartment hall, and ultimately, around the block—ALWAYS WITH THE CAREGIVER
Travel
Ride-alongs to get out of the house
Lunch out—somewhere easy to get to/into
Pay attention and notice when the patient’s energy is starting to flag
The photos, our 2016 anniversary photo and lunch for the Missus, belong to me and are used by my very kind permission.
In the weeks leading up to her surgery, Gaye experienced incredible grace and support from many dear friends. While the anxiety of the impending surgery weighed on her, the love from allies truly lifted her up above her fears. Though I previously wrote of the importance of support and thereby, the importance of who you reach out with your diagnosis there is no overstating how much that support means.
To have a friend, be a friend.
In the midst of Gaye’s struggle our dear friend, Willie, became quite ill. When Willie’s wife, Ann asked Gaye to provide wound care, (so she wouldn’t have unvaccinated people in her house) Gaye agreed without hesitation. More than simply changing bandages, we visited and commiserate with Willie and Ann.
Then, in a conversational slip, Gaye told Ann and Willie that she had been diagnosed with breast cancer. Without missing a beat Willie simply said it was time to stop worrying about him. He wanted us all to take the attention we brought to him and focus it on Gaye. Instead, Gaye continued to visit Willie and Ann, she continued to care for his wounds, and she continued to support her friends.
In a matter of weeks, Willie succumbed to the disease of his heart, which he had given unstintingly to everyone he met. Ann allowed us to be there with her at the time of Willie’s passing. Gaye worried that we weren’t doing enough to support Ann in her loss. Ann expressed the same concerns for Gaye.
Instead their friendship became even stronger. Gaye listened to Ann and supported her in Willie’s home-going arrangements. They talked about coordinating family obligations. Most importantly, they talked openly, allowing Ann to process her grief. Ann remained incredibly supportive of Gaye in the days and weeks leading up to surgery.
That tremendous grace, under the most difficult of circumstances, served as an example of love in acts and kindness that I still aspire to.
Gaye and Ann continue to support each other in healing.
“If not for some advance-degrees and medical licenses, this would be a criminal-assault situation,” Gaye, after her FOURTH needle-punch procedure
Over the course of several weeks, Gaye started her medication trial, met with the plastic surgeon, and had markers placed for the tumor, lymph node, and then for radiation to follow up. It was a lot and it went fast (three of those procedures were in one day). Even still, Gaye said she felt as if the waiting and the anxiety was eating her alive. Ann regularly checked in and they talked about television shows, of Ann’s journey in wake of Willie’s passing, and things to do while recovering.
Those conversations lifted Gaye’s spirits by giving her something else to think about than the cancer sitting (literally) on her chest.
People you never expect will surprise you with love and support
In the days leading up to surgery our neighbor, Dawn, offered to come with us on the day of. Rather, she insisted. While Gaye and I had been friends with Dawn going back to Hurricane Ike, in 2008, we never expected such kindness. Another neighbor, a retired nurse, offered to change out Gaye’s surgical drains.
When Gaye moved to Houston, her mother asked the Stewart family to look out for “her baby.” Closer to family than friends, the Stewarts were there for Gaye, (be it a hot meal or car repairs) all through college. As soon as Linda Stewart heard about the diagnosis she became an angel on Gaye’s shoulder. She also insisted she would be there on the day of surgery.
Who does that?
Honestly, I took neither offer seriously. Hospital waits are exhausting. We had an early check-in time. The procedure was scheduled for five hours. Who was going to sit with me, (not much of a conversationalist) for that long?
Then both confirmed they were coming and Linda asked if we would pick her up on the way.
We had a 05:30 AM check-in time. I set the alarm for 04:30 so we could pick Linda up but I was wide-awake at 4AM. I managed to choke down half-a-bowl of oatmeal as I knew I had a long day ahead.
Normally bright and happy and chatty in the morning, Gaye was nearly mute with nerves. She dressed, as instructed, in a loose-button-down shirt, and drawstring sweatpants. Her shoes were slip-on. Instead of worrying with her hair, Gaye wore a single French braid.
“If you want to go fast, travel alone but if you want to go far, travel with others.” —African proverb
When we pulled out of our garage at 04:30, Dawn was waiting. She followed us to pick up Linda. I had stressed about getting to the hospital on time, (I come from a military family where time commitments were reinforced with fives and tens) but instead of 5:30, we were there at 5:10, before even the valets arrived.
Linda went upstairs with Gaye to check in. Dawn and I drank coffee, (I brought a thermos) while we waited for the valets.
By the time I got the ticket and made it upstairs the nurse had come for Gaye. I went with her to pre-op and did my best to reassure her. A visit from Sister Maria Eleanor Caisido did WONDERS for Gaye’s spirits. Aside from being shi’a Catholic, Gaye had an aunt who was a nun with the order of the Holy Family so talking with Sister Maria was like a reassuring visit from a family member.
Nurses HATE not being in control
Then the research assistant came to see Gaye, (and collect her medication log). That further eased Gaye’s serrated-edged nerves as they talked about shoes and hair care for several minutes. Both Dr. B (oncology surgeon) and Dr. M (plastic surgeon) came by to check on Gaye. Then the anesthesiologist arrived. Dr. V originally presented stiff and serious but soon enough, he read Gaye’s mood and made some low-key jokes to ease her tension.
Nothing goes to plan
Then they wheeled Gaye into surgery and I went to sit in the lobby. I’ll spare you my anxiety and impatience and cut forward…by several hours. I will say that Linda and Dawn at my side kept me from bouncing off the walls or worse, lighting up a smoke right there in the waiting room.
Please note: I have not smoked in six years and would never jeopardize anyone’s safety by doing so. But right then, I would’ve stabbed six people for a cigarette.
From previous experience, I knew the surgical time would run longer than cited. But almost two-hours to the dot, Dr. B emerged from surgery, beaming. I promptly forgot all my manners and introductions as I peppered her with questions. Dr. B took charge.
Yes, she got good-clean margins of tissue around the tumor.
The sentinel-node procedure identified two bad lymph nodes.
Dr. B removed five total lymph nodes, just to be sure.
Dr. M would complete the reconstruction and close which would take another three hours.
Four hours later, (an hour after Dr. B. said Gaye should be ready) I got concerned. Anesthesia reactions, while not terribly common, do occur. An hour after that, I went looking for my Missus.
A nurse intercepted me and told me that Gaye had difficulty coming out of the anesthesia and was in some discomfort (?) but they were getting her dressed and she would be ready soon. The nurse directed me to get my car from valet and they would bring Gaye down.
“I get by with a little help from my friends,” Ringo Starr
Dawn graciously told me she would take Linda (who she only just met that morning) home so I could get Gaye to the house and situated. I damn-near cried at the kindness and support.
We got Gaye into the backseat, (so she could stretch out her long legs) of the sedan. One of the breast cancer survivors that Gaye follows recommended using a teddy bear to cushion the seatbelt strap. Gaye expressed profound gratitude for that message as we drove home.
Home is where your heart is
In short order, I got Gaye into the bed I had made-up fresh that morning before we left. She slept through the rest of the day, only waking up, (12-hours after they took her into surgery) for soup and water and then she was out again.
She was medically mandated to sleep sitting up in bed, propped up with pillows which added to her discomfort. Still she said that the pain ran mostly to dull aches. She only took the narcotic meds once.
Keeping our three cats out of the room so Gaye could rest (and ideally, avoid infection risk) was a full-time job. I’m not kidding. Somewhere along the way, two of the three learned to turn doorknobs.
So, key takeaways:
Planning the day before will make the “day-of” go easier.
Your friends and family want to be there for you—LET THEM
Food for the patient and the caregiver
Gaye anticipated a queasy, post-op tummy and I made a pot of chicken soup but I also had stuff for grilled-cheese sandwiches and garlic toast (her go-to comfort foods).
The day before, I got takeout from my favorite Tex-Mex joint and had fajitas and tortillas to sustain me.
Clothes for convenience—this isn’t the time to be cute. They have a dress code in the patient instructions for a reason.
Raising arms (to get into a T-shirt or sweatshirt) after chest surgery is NOT fun.
Button-down or zipper-front is your friend, as are slip-on shoes.
No matter what they tell you, it’s a long day—if you’re the patient’s support you can’t afford a drop in energy/blood sugar.
Eat breakfast
Bring snacks
Planning, planning, planning
I had a thermos of coffee to bring with me
Snacks (nuts, power bars, fruit) even though I was too nerved-up to eat.
Make the bed, (nothing feels better than fresh clean bedding) before you leave.
If necessary, buy a cheap set of sheets so you can change the bedding every day.
Satin pajamas make moving the patient across the bed easier.
Have your questions ready
The doctors move fast and cannot wait for you to get your act together.
Have a notepad with your questions written down and WRITE DOWN THEIR RESPONSES. You won’t remember them later. Trust.
Valet your car. It’s worth the money in time and aggravation.
If you have pets, have a plan.
Bacteria is the enemy and it is deadly to your post-op loved one.
The pets MUST be kept outside the bedroom where your loved one is convalescing.
Arrange for someone to walk the dog while you’re at the hospital and (at least the first 24 hours after).
Put a loved-one’s blanket or a sleep shirt near the pet’s bedding so they’ll have your loved-one’s scent for comfort.
Finally, things go wrong. Expect it and roll with it. No one benefits from you losing your sh—tuff.
Seriously, teddy-bear-seat-belt guard—don’t skip that one.
Stay positive. Stay strong.
The photo at the top, Gaye at Fonda San Miguel in 2016, belongs to yours truly and are used by my very kind permission.
The title may seem like a dad joke but it really is on the nose. Almost no one makes it through cancer without support. And, unfortunately, not every friend or family member will be the supportive person you need. The people who lift us up and help us along on our journey truly are the closest people to us but they are not always the people we expect.
Typically you know who you can call and who will let your call go to voicemail
A catastrophic health condition does not suddenly compel compassion or caring in others. The diagnosis certainly doesn’t squash animosity.
Relationships and relationship problems are both years in the making. The difficult parent/sibling/friend—difficult before the diagnosis—is just as likely to be the same difficult person after the diagnosis. They do not (often) change based on a crisis, especially someone else’ crisis.
The people who care, who are there and engaged when you share your diagnosis were probably there before the diagnosis, whether we see them is another thing. Likewise, the folks who ghost you in your moment of need were likely MIA in your life anyway.
Choose accordingly
As kids we all had that friend who couldn’t be counted on for the time of day. We put up with them because she/he was easy to hang out with or entertaining or we knew they needed a friend. We eventually grew up. When they didn’t, we outgrew them.
Gaye comes from a large, close family within a small, close community. Still, despite what Hallmark Channel will sell you, those ties are not always the ones that support weight. And loose ties will let you fall.
When Gaye first got her diagnosis, she knew who she didn’t want to expend energy discussing her condition with. The sibling she idolized in childhood but who became distant, even adversarial toward Gaye in adulthood—nope. Childhood friends who had drifted away—she let them drift. Those are not fonts of support and care.
As you navigate treatment you don’t have the capacity to carry other people’s issues
As adults we realize that people either lift you up or they pull you down. Just as we rally around those we care about when they face hardships we need others to rally around us. When we call on that person, we truly are trusting their affection for us in our time of need. Sadly, that’s not everyone in your contact-list.
Just because you know their name does not mean they are your friend
There were misfires that confirmed Gaye’s earlier decisions. She did confide in a childhood friend and promptly did not hear from that person again. I was miffed but Gaye put the situation in perspective.
“I don’t have time to deal with whatever is going on in her life. I have to stay positive in the struggle of my life.”
Weeks later we found out from a third party that the friend had gone through their own tragedy right before Gaye shared her diagnosis. While her friend never reached out to us, (quite telling of where we ranked in their life) Gaye did reach out to console the friend without response. That was that.
Cancer is a scary diagnosis but it is not contagious
It’s natural to feel apprehension, even sympathy fear when someone shares something as devastating as a cancer diagnosis. Many people, unsure of how to move beyond that fear, cut ties. Others are simply ambivalent about breast cancer.
Breast cancer remains the 2nd leading cause of death among women in America
Disregard is deadly, community is life
What you cannot do is isolate yourself. You will need the love and compassion of others to absorb the diagnosis. The care your true friends and family extend will sustain you through hard days of treatment.
Gaye received that compassion and encouragement from other siblings. The brother who checks in once or twice a year has called her often and demonstrates great affection. The work-around-the-clock sister makes time to call Gaye daily. Gaye’s uncle stays in contact with us both.
Then there’s the people you never expect but show up anyway
Gaye reached out to her sister’s friend from college, a nurse who treated breast cancer patients. More than imparting experience and advice, Natalie became a tremendous resource of encouragement. More importantly, she became a great friend to Gaye when other people shut down.
My union brother Samm has always loved Gaye but since her diagnosis, he checks on her weekly. My scribble sister Shelly has taken to texting Gaye, just to check-in. Another scribble sib, Jennifer sent a copy of Funny Times to lift Gaye’s spirits.
The dearest friends are often the quietest
We have a friend we see two or three times a year. She warned us months ago that she would be radio-silent while studying for the bar. But Minh looked up from her review, read my facebook posts, and if by magic, Gaye received a late-night macaroon drop. Our friend wanted us to know we were in her thoughts. That love is both beautiful and restorative.
Never underestimate the impact of fruit and/or flowers
Even our colleagues showed up with words of encouragement and acts of true compassion. Coworkers, (mine and Gaye’s) sent Edible Bouquets. More than the delight of fresh fruit, the arrangement was beautiful, the balloons, and the bear brought her great joy. Those words, those acts, mean the world in restoring battered spirits.
You will never turn someone’s heart. They will care or they will not. Any change will occur inside, not outside. Either way, you can’t wait. You have to keep moving forward with the people who answer your call.
Stay positive. Stay strong.
The photo above, Gaye at Fonda San Miguel, 2015 belongs to the author and is used by my very kind permission.
Days after Gaye agreed to the surgical appliance study, she was scheduled for an appointment with both Dr. B and Dr. L. Of course she feared the worst. Instead, Gaye received a nice surprise.
Dr. L, the oncologist, said Gaye was an excellent candidate for a medication trial. If successful, the medication would reduce the extent of her breast cancer surgery. She said the study sponsors wanted another biopsy but Dr. L stressed that Gaye did not have to commit to a second biopsy to be in the study.
Dr. B also stressed that the second biopsy was not required…but she also stressed the potential benefit. Gaye opted for the biopsy.
Around the same time Gaye began to research her procedures and what to expect in recovery. Among the websites she found to be most helpful are:
Both sites comprise communities and with any community, there is support and resources as well as limits. Gaye found the forums dedicated to African/African American breast cancer survivors to be most helpful. Click around and see what works best for you.
One of the biggest bits of advice was on the importance of a good post-procedure bra. We started with Top Drawer Lingerie. They market on bra-fitting and we went there specifically for Gaye to try on a front-closing bra touted as ideal for post-surgery use.
Your results may vary
The Top Drawer location in Houston is in a difficult-to-get-to shopping center that screams “exclusive.” Normally, I would’ve waited in the car and played Candy Crush but I had a feeling that the location would contribute to potential bad attitude. If shopping while black, a white spouse can tip the scales toward basic, professional treatment. Sometimes.
Cancer is bad for business
Gaye was the only woman of color there. The clerk ushered her away from the entrance with such speed that I thought for certain we were in good hands. But moments later, Gaye emerged from the back of the store, clearly displeased.
The clerk followed, asking why Gaye was leaving. When Gaye responded that, “You took me to the stockroom, you lectured me on the bra I should buy based on my size. You would not listen when I told you I will be smaller after my surgery, I will have limited mobility so a back-closing bra will not work for me, and I told you specifically what I was looking for but you seem determined that I will not be allowed to try it on.”
NOT the Pretty Woman experience
I would love to tell you that the woman apologized, that she became compassionate, and she provided caring service. Or even that my white presence made a difference. But this is not fiction.
The clerk clapped (!) her hands in exasperation, shrugged, and said, “I’m willing to try again and roll out the red carpet that you seem to expect.” The sarcasm is implied.
Again, factual account. Gaye had to get a hold of me before I embarrassed us both with a display of my masters-level command of profanity.
Kindness never goes out of style
After we surrendered the store to the Buffies, Bunnies, and other preferred Bs I held Gaye’s hand while she vented the emotion that overwhelmed her. Once Gaye recovered, we schlepped back to a neighborhood accessible to everyone and found our way into a Soma Lingerie and Intimates.
Cookie met us at the door—but with the intention to help, not deflect. She was one of only two clerks in a store swamped with women and children. She was also immediately warm and attentive. Gaye gave me a wave off and I parked it at the front door with the lone other dude.
When we left, Gaye felt confident in her bra purchase—BECAUSE SHE GOT TO TRY THEM ON—as well as delighted with two sets of pajamas with pockets to accommodate surgical drain bottles. We also left with our dignity, courtesy of Cookie’s professionalism and basic humanity.
Days later, Gaye was back on the surgical bed for another biopsy. A young resident performed the procedure, (under Dr. B’s close supervision) with great care and concern for Gaye’s comfort. Where the first biopsy collected three tissue specimen from the breast tumor and one from the suspicious lymph node, the second biopsy collected five skinny-needle specimen from the breast tumor.
Where were those benefits again?
While never stated as part of either trial, we never received a bill for the genetic marker test that runs a couple of thousand dollars. Further, the second biopsy included an Oncotype score, (a diagnostic tool that rates the statistical probability of the cancer returning). That test is also several thousand dollars and again we received no bill. More importantly, Gaye got the unofficial results immediately: a score of 39-54 is considered moderate risk. Anything over 54 is considered high risk. Gaye’s score was 13.
Living well is healthy, resentment and retribution isn’t
I tried to get Gaye to let me follow up with Top Drawer. My skills at profanity are only excelled by my skills at complaining. Seriously, in high school I lettered in carping. But Gaye said no. The clerk’s problem at Top Drawer was just that—her problem. Her lousy service redirected us to excellent service and a kindred spirit. Cookie not only sold us garments, she shared information including how Gaye could donate her surgical bras once she recovered as well as her pre-diagnosis bras. The warmth and genuine compassion Cookie showed Gaye far exceeded the money spent.
Below are the bras Gaye has bought and how each one has worked out.
Tek Gear, zipper-front sports bra from Kohls. Gaye says it worked for not knowing better. In short, it was good for the biopsy. However it was clearly not suitable for surgery.
Anaono Front Closure Post Surgery. Designed by a breast-cancer survivor, this is the best bra after surgery, with soft cotton. Downside, it rides-up, (Gaye is a tall woman) and the seam landed on her lymph node surgery cite
Quick takeaways:
Medical trials are freightening for a variety of reasons but every treatment and/or medication we have today went through a medical trial. Always be receptive to new information and opportunities.
Other people’s ignorance is not your problem. Keep moving forward.
There is genuine kindness in the world. You only see it when you tune out the negativity.
Treatment, products, services—there is no exact science. It’s all trial and error.
Stay positive. Stay strong.
The photo above, Gaye at Franklin Barbeque, is by yours truly and used by my very kind permission.
After our first consult with Dr. B and Dr. L, we collected our notes and prepared to leave with what was left of our brains. Then Dr. B popped back in to introduce a young research assistant. Dr. B stressed that the study was strictly voluntary. She also said that it would advance breast cancer treatment but also benefit Gaye directly.
Researcher H tentatively pitched the benefits of the study, (a clinical trial for a surgical appliance) . Gaye quickly agreed to participate in the study. Relieved of the burden of “selling,” the soft-spoken young woman bloomed in explaining how the process would work and immediate benefits like a prepaid parking card.
You can’t believe everything you find online and some you won’t want to believe
In the interim between the initial consultation and the test results we had time to continue our research. There is an abundance of information online from breast cancer forums to support groups to research symposiums. Sadly, not all of the information is good.
But worse than the alternative treatments and the outright lies propagated by the lunatic fringe is the heartbreak of treatment-lag documented by actual breast cancer patients and physicians.
So many of the journeys involved tone-deaf care or dusty care plans that would be easy to discount as sketchy anecdotes from disgruntled patients. But more than one doctor speaking at symposiums declared that they didn’t do lumpectomies—despite countless clinical studies that demonstrate the efficacy of lumpectomies over complete mastectomies in certain early-stage cases. Still other doctors stated that they didn’t “do” reconstructions. Those attitudes fly in the face of established findings linking reconstruction to overall positive recovery as well as decreased post-surgical depression. Without coordinated care, the patient is left to navigate recovery on their own.
Far from standard
Having grown up here, I could not understand why so many people would come from all over the world to Houston for medical care. Didn’t they have doctors where they came from? Wasn’t the care at least comparable? Did they not read the weather report or have any concept of what 90% humidity feels like?
From our reading, clearly the answer is ‘no.’ Sadly, in almost every instance of entrenched-outworn care, the attitudes were well off the established medical-research path both intellectually and geographically. To put a finer point on the pencil, it truly seems the further you get from Boston, NYC, Houston, and Los Angeles, (with honorable mentions for Baltimore, Cleveland, and Rochester) the more…defused the care becomes.
It is evident not only in dated care plans but also in subconscious, (we hope) biases women of color continue to face in healthcare. While breast cancer is more common in white women, black women are more likely to die from it. There are myriad contributing factors but access and level of care are huge. This is immediately borne out in repeated anecdotal and as well as published findings in which black women are not offered lumpectomies or reconstruction after surgery at the same levels as white women.
Location, location, location
One of the few benefits of living in Houston is the proximity to the Texas Medical Center. Heart surgery was pioneered here. Organ transplant innovations were piloted here. But more importantly, (for us, anyway) the University of Texas established the M.D. Anderson Cancer Center here, in 1941.
M.D. Anderson ranks first internationally in cancer care and scientific study with over $800mm dedicated to cancer research in 2018. Surgical innovations, chemotherapy and radiation therapy innovations, even proton therapy were all developed at M.D. Anderson Cancer Center. That knowledge then spread throughout the international medical community. Except where it didn’t.
So, depending on the genetic test results and additional biopsies, Gaye had the prospects of a lumpectomy based on the indices gleaned from studies done at M.D. Anderson. Her oncology surgeon has a plastic surgeon in the loop for reconstruction. This is a recent idea.
Reconstruction is one of the few cosmetic procedures insurance will pay for. That is largely due to studies that link the patient’s overall physical recovery and emotional health to body-image. Those studies were conducted around the country but M.D. Anderson led the charge.
Breast Center—more than a name
The hospital we went through is affiliated with a medical school that has a renowned research program but more importantly, the hospital refers breast cancer patients to a center established exclusively for breast cancer care. More than convenience, (and NOT having to schlep all over the fourth largest city in the country for tests, consultations, and counseling is a huge issue) it is a collection of next logical steps.
What that means is when Dr. B left the exam room on our first visit, the clinical-trial researcher came right in. When the researcher exited, the genetic testing counselor entered. From there we crossed the hall for lab work. Easy-breezy-covergirl style.
Benefits
Dr. B stressed the benefit of participation in clinical trials but never tried to “hard sell” us on the process. However, what we found is that one test led to another. Surgical device trials led to a medication trial which led to a trial for the lymph node process.
In the weeks that followed we got the results back on the genetic test results. The testing array screened for 67 genetic markers that could suggest thousands of genetic mutations and indices of congenital abnormality. BRCA, the genes we were most concerned with, came back negative.
“This is not the end, this is not even the beginning of the end, this is just perhaps the end of the beginning.” Winston Churchhill
Our care plan was still not set. There were still questions. Gaye would have additional biopsies, (which we’ll touch on next time). But the intense dread of BRCA no longer dominated our thoughts. Practical care, under the umbrella of a center made all the difference for us.
The photo at the top, Gaye at Harvard Hall, is by yours truly and is used by my very kind permission.
Days after the biopsy my wife and I sat in Dr. T’s office for the results. Dr. T, (my wife Gaye’s OB/GYN) confirmed the lump found in Gaye’s routine mammogram to be breast cancer. She also said it was early-stage. Of course Gaye would survive.
I won’t say the floor fell out from under me but I did keep a tight hold on the chair. Cancer, but Gaye would survive. However, Dr. T’s urgency in calling a surgical oncologist was not lost on us. When she gave us the address and told us to go—that day—we went.
Caregivers—it’s about her, not you
That diagnosis will knock you back on your heels, even if you think you’re prepared. Still, what you feel is NOTHING compared to what the diagnosis will do to her. It’s important that you pull it together. She will need you to navigate the details, to keep track of the parking-garage ticket and the medical insurance cards.
Gaye called our primary care physician, as I drove. However she had relocated her practice a good 80 miles from us. We had an appointment with a new PCP but that appointment wasn’t for another three weeks. Of course we needed a referral in the next 15 minutes.
I’d love to say this is where the heavens parted for us and the barriers fell but this is a factual account—right down to going to the wrong office—and medical office staff is still medical office staff.
Use your energy and your time to her advantage. Gaye didn’t need me to rant, rave, or pitch a fit. She needed me to drive. We went on to our appointment without a referral.
“Well begun is half done,” Aristotle
Between the mammogram and the ultrasound and again between the biopsy and office appointment we had long days with our thoughts. If you or someone you love face this challenge, you will have long days with your thoughts and questions.
Use the time to get it together:
Write down the questions.
Find your insurance cards.
Make a list of all medications and SUPPLEMENTS with the dosage.
If you have a smartphone, take photos and you’ll have your pharmacy number and address, too.
Secure referrals, if you can.
The nurse navigator I mentioned in the previous article may be able to help.
Make peace with chaos, because there is always another form
At the surgical oncologist’s office, we navigated a comedy of errors including a large fee, (because we were unable to get the referral) and a defensive screen worthy of the NFL. Finally, we were shown into the examination room. The clinical staff was WAY more professional and compassionate than the office staff. Still, all the professionalism and compassion in the world doesn’t stop the onslaught of paperwork. The physician’s assistant asked Gaye the same questions that she had answered on the online form.
Zero-to-sixty FAST
Dr. B arrived, like a rockstar. As I previously noted, Gaye knew Dr. B from mutual time at St. Joseph Hospital but had no expectation that Dr. B would remember her. To our surprise, Dr. B was genuinely delighted to be remembered. Her warm greeting was a safety line above the fear and high emotion.
Dr. B went from warm-greeting-to-matter-at-hand urgency in an instant. She also named the cancer.
Invasive ductal carcinoma
One of the most common types of breast cancer and highly treatable. The lymph node involvement complicated things but Dr. B exuded enthusiasm. She assured us that the oncologist that she worked with, Dr. L, (who made her bones at M.D. Anderson) would manage radiation and, if necessary, chemotherapy. It all looked promising. Then Dr. B reviewed the patient information/history form.
Gaye’s family history of pancreatic cancer changed everything. Dr. B raised the spector of BRCA (BReast CAncer gene mutation) as well as the possibility of triple negative status, (aggressive with a high recurrence rate). Dr. B said Dr. L would consult with us but the first step would be a DNA test to screen for BRCA genetic mutation. With professional precision, she stated if Gaye tested positive for BRCA, she would recommend a double mastectomy and strongly suggest Gaye accept it.
A step ahead of despair, Dr. B said if Gaye tested negative for BRCA, then she would offer a lumpectomy. She explained that she would do a sentinel node procedure on her lymph nodes after the breast procedure. Both the tumor and the lymph node dissection would be performed in the operating room.
Gaye managed to ask, even if she tested BRCA negative, if a complete mastectomy might be more effective than a lumpectomy. Dr. B explained that in four-plus-decades of research there was no data to suggest greater efficacy for a mastectomy in the absence of BRCA or triple-negative status. She also said and I paraphrase, “I can do complete mastectomy if you insist but there is no measurable benefit over lumpectomy and radiation and/or chemotherapy for your type and stage of cancer.”
Respect comes back ten-fold, pay it forward
I offered to leave the room during Gaye’s physical exam. There are documented cases of men extending abusive/controling behavior to their spouses healthcare decisions. Physicians are sensitive to this. But Dr. B simply directed me to step around the curtain.
After palpating the lump and the lymph node, Dr. B stated she would have a plastic surgeon in the operating room on the day of surgery to reconstruct after the lumpectomy and to close. She explained that plastics were simply better at filling in tissue and minimizing scarring.
This is a HUGE deal for African-American women:
Keloids (or hypertrophic/large protruding scar tissue) is a condition prominent to African Americans
Less than 30% of all African American breast cancer patients are ever even offered reconstruction
The thoughts and questions are no good if you can’t find them
My responsibility at the doctors’ offices was to take notes. The situation is overwhelming. The medical terms, (Gaye is a nurse and still had to look up a lot of what was said) the time-frames, and information overload is crazy-overwhelming. Also, the most compassionate doctor has multiple patients waiting. They tend to go fast and they are not inclined to repeat themselves.
Get organized, I can’t stress this enough. You don’t want to get in front of the doctor and start digging through a stack of envelopes, the back of receipts, or napkins for the questions you wrote down but don’t have organized.
We chose the Rocket Book. Once marked up, pages can be loaded onto your smartphone or your computer. Here’s the cool part, you can then wipe the pages clean and start over again. You’re not likely to confuse it for your work notes or your kid’s notebook.
RocketBook
I filled up four pages and then Dr. L, enchanted by the Rocket book, took it from me and began to note everything she said, even drawing diagrams of the cancer cell.
Dr. L’s notes
That book has been indispensable in researching terms and reviewing what was said. Not the least of which is stopping some panic attacks when research turned grim but really didn’t apply to our situation. This is a long road. Starting off with an organized system eases the journey.
“If you stay ready you don’t have to get ready,” Bob the Drag Queen.
Please note: we received no compensation from the makers of Rocket book. We bought it because it looked like a good solution for us. Someone else may opt for an iPad or even notes on a phone. Which ever organizational tool you choose, do get organized and stick with it.
All photoes belong to me and are used by my permisison—which I think is damn decent of me.
Due to continuing COVID-19 protocols, I sat in my little hoopty and prayed novenas while Gaye, my wife, was in the Memorial-Hermann Imaging Center. An annual mammogram had revealed a suspicious lump. Her doctor ordered an ultrasound for follow up.
We had talked all the way to the center, as we always talk, all the time—deep thoughts to cat videos on TikTok. As we discussed plans to remodel our home, our conversation that day felt different. Debates of putting a cover over our patio or waiting until we replaced the nearly-twenty-year-old roof felt forced. Mostly, we talked to suspend anxiety.
Gaye lost a sister to pancreatic cancer. Less than two years after that, her mother died of the same disease. She had grown up in a community hemmed in by refineries. The rates of cancer in that community exceeded the rest of the county.
Fun or not, followup is imperative
Still, I tried not to worry. Fibroids plagued Gaye for years. So I held onto the idea that this lump was just a fibroid. They’d take another look and see that.
Then the ultrasound tech called and asked me to come in for the radiologist’s consultation. She said she would meet me at the door. Fear grabbed me by the throat.
From the door, the tech led me to a dim-lit room where my wife sat in a paper gown, still in the slacks she had worn to work. The radiologist was with her. Her face was open and expressive and conveyed the doctor’s bearer-of-bad-news regret.
Find the helpers
I must’ve grayed-out because I still don’t recall the doctor saying the word “cancer” but she did show us the irregular shape of the lump, magnified on the screen. She also said that a biopsy would reveal type and stage. There was a suspicious lymph node, too. The radiologist did offer that the lymph node might be plump due to a recent COVID-19 booster.
In days, (that seemed like weeks) Gaye reported to the imaging center for the biopsy. She chose to go alone. As scary as it must have been, Gaye is nothing if not practical and thought I should save my leave time in the event that the biopsy turned out to be cancer.
There was some comfort. The radiologist who performed the biopsy was a woman and Gaye said that she extended been-there compassion and consideration. The same ultrasound tech assisted and she remembered Gaye.
Sisters gonna work it out
They had a pleasant conversation through the course of the biopsy. To Gaye’s surprise, the only part that she considered painful was administration of the local anesthetic which she said felt like an ant bite. In fact, the popping sound of the spring-loaded needle, (used to retrieve the sample) was the worst part. Before Gaye knew it, they had inserted a second needle to place metal markers, identifying the tumor and suspect lymph node.
The radiologist said the marker served an additional purpose. If the biopsy found the lump to be benign then the marker would serve to identify the lump as safe in future mammograms. By that point Gaye and I were living on ifs.
In the lead up to the procedure, the ultrasound tech told Gaye to bring a sports bra on the day-of. Gaye said that was the best advice ever. After five separate punctures for the biopsy and marker placement there was no way she wanted to struggle into a traditional bra.
Nurse Navigators Are Your Friends
Memorial Hermann, like many large healthcare providers assign a registered nurse to help the patient navigate the course of care. Often that course of care looks more like an obstacle course. The nurse navigator can help coordinate diagnostics (lab work, biopsies, etc.). They can also assist with billing issues. Our insurance company assigned a nurse navigator as well who helps with financial questions.
This is huge. With copays and office fees for everything you will meet your deductible fast but medical office personnel don’t know (or necessarily care) and will still try to collect from you. This will be a recurring theme. Getting a refund after the fact can be like pulling your own teeth: slow and painful.
The Memorial Hermann nurse navigator, “Nurse T,” called Gaye the day after the ultrasound and continues to call Gaye even though we have opted for another facility. Practicalities aside, those calls are also emotional lifelines. Those calls are especially helpful when the waiting weighs on you like bricks around your neck.
Nurse T was there on the day of the biopsy. She came into the dressing room to help Gaye. She also told Gaye what to expect in the procedure—right down to how they would position Gaye—as well as what her next step would be. When it was over Nurse T was there to help Gaye get dressed and to support her emotionally. No matter your beliefs, this is proof of human divinity.
The 5 days between the biopsy and getting the pathology report was hard. We used this time to talk with friends and family. This is not the time to lone-wolf it. This is also not the time for negativity or diva-behavior (others’) choose your support team with care.
Takeaways:
If every you or a loved one need a breast biopsy please get a post surgical bra. They are soft, non-constricting and easy on the puncture site. No underwire is a HUGE comfort. The better bras have pockets for ice packs.
Lean on the navigator she will walk you step by step on procedure and next step after the procedure.
Don’t skimp on the bras. Ultimately, Gaye had three biopsies, (more on that later). If surgery is necessary, the bras will be imperative. Once treatment is complete she plans to donate her bras.
I started this blog to focus on all things crime—true-crime, crime fiction, movies, television shows, crime songs, even. Obviously, my attention has shifted. As we proceed with details of our journey, we will tackle clinical, emotional, and social obstacles as well as ways to round-off the rough edges. We welcome any productive, helpful comments.
Criminal Activity 