Living Beyond Survival Mode

Just as we had the previous year, Gaye and I started her recovery by walking. As before it began with a slow shuffle from our bedroom in the back of our house to the front door and then back via a circuit of the living room and kitchen. 

Gaye reviled the walker but used it all the same.

At first she was so weak that one circuit would wear her out. She would sleep, (or as close as she got to it) in the rental recliner in our bedroom, for hours after each circuit. Our first few days were two circuits, bath time, and then down for the night.

What was different this time was the sense of loss. While the first surgery had been difficult, (as if any surgery could be easy) there had been a sense of healing that spurred recovery. We were recovering from breast cancer.

We were winning!

This time our elation that Gaye had survived clotting issues (and then indifferent/neglectful) medical staff settled into quiet resignation. We survived—shellshocked and deeply wounded—now Gaye had to process the failed reconstruction. The best I could do was hold her hand.

An amputation of identity

Gaye had never been a “body” girl. Raised a devout catholic, she dressed modestly. In twenty years of marriage, she’s worn a swimsuit once, on our honeymoon in Puerto Rico, where no one else knew her. She will tell you in a heartbeat that she never traded or even leaned on her body for an advantage.

So, I’d love to tell you that Gaye bounced right back. That she felt no loss for what she had never used. That she was ready to move forward with Dr. M’s offer of another reconstruction, (without the vascular component that wrecked the previous reconstruction).

I’d equally love to tell you that she sprung back into life without care or concern for reconstruction at all.

Those would be lies.

Who am I if I’m not who I was?

Gaye had moments when she expressed hope and planned for how she would dress for the new reality. Then she would have moments when she would reflect on a favorite dress or top or outfit that she could no longer wear. Her pain broke my heart.

The question behind the mercurial shift was a question of identity. Fashion had always been Gaye’s form of artistic expression. Frayed jeans, Chucks, and a blazer paired with a curated T-shirt from her “whatever available” look turned many a fellow fashionista’s head. Wrap dresses, tunic tops, fun-casual outfits, and formal, on-the-town wear—Gaye has the eye for it all.

And it all brings her tremendous joy. She lost that for a minute. The liaison nurse from BC/BS assured Gaye that there were non-surgical options to try before she committed to another reconstruction. Dr. M promised that he would never abandon her and would do anything to make her whole, again.

The best options is useless when you’re unable to see tomorrow

All of it was well-intentioned. None of it eased Gaye’s pain or soothed her anxiety. When she cried, I held her. When she raged, I did my best to absorb and deflect. When she expressed hope, I gave a silent thanks to the universe for her resilience. Mostly, I thank Yoda that she talked. Gaye is silent at her lowest and after twenty years of marriage I still struggled to reach her when she goes that low.

You can get low but you can’t live there

But that’s not to say we didn’t try. When I felt that Gaye had been low enough, I pushed, pulled, cajoled, and conned her out of the chair, out of her funk, and out of the trap of misery. I’m a hero, you see.

Yeah, all BS. Really, I did nothing but prompt her, crack jokes, and make up songs. When met with indifference, I continued. When met with hostility, I doubled (and softened) my efforts. When all-else failed, I danced the cats through the room to my made up songs.

Friends help, so do brownies

I’ve previously stated how important our support circle has been to us in our recovery. But there is no over-stating how much our friends—some of who we had neer met IRL—lifted us up. Jennifer and I were scribble siblings for years, trading writing, food recommendations, and cat memes. She was a voice of support during Gaye’s first diagnosis. At first post about the second diagnosis, she was only a click away. Her care manifested in food. Brownies from Jennifer were more than sweet treats, they were a variety pack of love.

Like Jennifer, Bryan and I were social media friends for years. Gaye extended some professional advice at the cusp of the pandemic. Then, out of the blue, he reached out. Also like Jennifer, his love and concern manifested in food.

I mean, there’s only so much soup, dumplings, and eggrolls a person can eat.

More than a DoorDash deliver, more than a meal, (we actually made two meals off of this) the food was a hug in the middle of dire times. In that moment, we were not alone in our climb back. We have people.

I was serious about two meals.

The tough stuff was all her

Gaye did the work. Using physical therapy training, she rolled out of the chair and she walked the house. Dawn, with the best intentions, offered a Rollator walker, (it has handbrakes and a seat). Not only did Gaye refuse, by the end of the second week, she gave up the basic walker the hospital had sent home with her.

She graduated from walking the house to walking the driveway. Then she walked the block. Then she walked the neighborhood. She started to work around her new “normal” and she began to plan. 

Cancer will take your identity but it will poison your joy—you have to find your joy in small victories

Gaye wanted to bathe herself and that became her new goal. When she no longer needed Dawn’s help, she insisted on bathing and dressing privately. I insisted on being outside the door in case she needed me.  

Then she wanted to sit up in the living room and work, away from the confining recliner. My job was to keep the cats from climbing on her. They liked that almost as much as they liked the singing/dancing routines.

When she could manage working from the couch, managed to sit up for more than a couple of hours, she wanted to go places and do things. Errands, treats, just to drive, she said. But as much as she wanted to go/make/do, Gaye did not want to be around people. She didn’t want people to see her. She didn’t want to be judged. Cancer had corrupted Gaye’s love of going. Indeed if there was a theme to this recovery it was fear and resentment.

Judged by who?

We watched a lot of TV, too. One of our few indulgences, (we’ll discuss the financial cost of breast cancer another time) is Disney+. When I suggested the live-action movie Cruella, she was less than enthusiastic.

Gaye prefers Marvel and Star Wars because they are (usually) safe from real-life issues. She didn’t have to think or invest much into either and both kept me quiet. But I had read the reviews and I had a plan. So, I insist on Cruella. Besides, as Gaye often reasoned, she would be asleep in the first 20 minutes, anyway.

Then she saw the clothes. Set in swinging Mod-era London, Cruella is a fashion wonderland populated by stand-ins for Chanel, Saint Laurant—all in a candy-land color palette. Every shade and hue of person, every possible type of fabric and cut were on full display. There was some fun writing, too.

Gaye was enthralled. Then, in a resale-shop scene she got quiet. And I got scared. Her favorite character, Artie, (John McCrea) had just strutted into the scene in a sheer, lace top with a pussy-bow tie. The pussy-bow tie had been Gaye’s signature look.  

After minutes of nerve-wracking silence, she asked if she wore a lace black top with a suit, sans prosthetics did I think anyone would see/notice her mastectomy scars?

“If they’re looking that close they’re not a hater, they’re a fan.”

Gaye’s smile, her laughter of delight felt like my purpose in life. 

Takeaways:

• There are no high-roads out of a bad surgical outcome
• Your loved one has to have the space to walk the low roads
• She can get low but your job is to make sure she doesn’t try to live there
• Lean on your friends and family—they want to help you both
• Find what interests her most in life and use it to guide her back
• Where there is hope, there is life after breast cancer
• Your job is to keep the hope coming

Stay positive, stay strong.

All the photos belong to the author.

Never Lose Sight of Your Goal or Your Love

After seven days, Dr. M cleared Gaye to come home. We could hardly wait. Still, Gaye made a point of speaking with every member of her care team to thank them. Even after vascular issues led to clots that cost her Dr. M’s reconstructed breasts, even after other nurses’ disregard almost cost her her life, Gaye was still thankful. 

She shared the gift bags of Tony Moly facial masks (that she had planned to share with her sisters) with the nurses who cared for her. Gaye also got names for letters to the CNO as well as contact info for written thanks. Finally, we had our drain logs, care instructions, and it was time to leave.

It’s easy to get caught up in anger, (me) resentment, (also me), and determination for a reckoning, (me, again). But that doesn’t get your loved one home. That doesn’t make her comfortable. It damn-sure doesn’t contribute to her recovery.

The nurses’ aide told me to get my car from the valet and call her once they brought it down. As difficult as it may be to believe, I can follow basic instructions. In less than twenty-minutes, I had Gaye loaded up and we were on her way.

Gaye’s planning paid off in comfort, convenience, and care for both us. Her braids meant she didn’t have to worry with her hair. That may sound shallow but I promise you that even in a hospital, you’re treated how you look. The rising recliner made sitting and standing easier when she could use neither abdominal nor chest muscles. The booster-seat for the toilet made for a safer potty experience. A fridge full of favorite foods meant we were provisioned. 

All to the good. Because the elevator ride, the ride home, and the shuffle inside wiped Gaye out. She managed to eat half-a-bowl-of-soup, one dumpling, and half an eggroll. 

She slept right up until the time for me to empty her drains. 

About those drains…

You’ll have to empty them. Then you’ll have to log the volume of fluid that the drain has pulled off of the wound. The nurses will give you a tutorial but they only teach as far as you listen. It’s really a good idea for you to start emptying the drains at the hospital to get used to the process while you’re still under adult supervision.

You’ll learn tricks like using safety pins to secure the lines to your loved one’s gown. That way the lines don’t catch on furniture, tangle in bedding, or worse, pull on your loved one’s body. She’s in enough pain without that.

The log the hospital gave us was one-size-fits-all form, which means it made no sense and didn’t have enough spaces for all the drains. Gaye had six lines, pulling fluid from her chest (two on each side) and abdominal (one on each side). Thankfully, Dr. M’s physician’s assistant had already warned us and gave us an alternative plan—a simple sheet of paper with four-hour intervals, L 1-3, R 1-3. 

Of course, as an accountant, I had to make it more difficult than necessary—and then put in Excel. The process is simple enough: disconnect the soft-plastic hand-grenade shaped bottle from the line. You squeeze the bottle into a specimen cup that gives the approximate volume of fluid. Then you compress the empty bottle and while crumpled, you reattach it to the line. 

It’s best if you have a specimen cup for each line. Once you have drained/reattached each bottle, then record the amounts on your log. Empty the bottles, rinse out the cups and place them on a towel to drain. 

Do this every time. You want to be ready for the next drain. You want to minimize her discomfort. You don’t want to be juggling cups and towels and log sheets. 

We sent the drain reports to Dr. M’s PA. 

This all sounds very sanitary and detached it is because there is no describing how weak Gaye was when I brought her home. How often she woke whimpering in pain. How she was in turns relieved to be home and then despondent over the outcome of her surgery. 

Brass tacks

This last part is the hardest—giving her the space to be human. As your loved one’s primary caregiver, you will empty drains, you will change bedding, you will wipe her butt. And then she will tell you she doesn’t want you to help her bathe, doesn’t want your help with her bandages, doesn’t want you to see her suture line. She will tell you that you can go find someone else. That she releases you from your marital vows. She will snap and her words will cut. But it’s not you she’s snapping at. She will cry from exhaustion, frustration, and because she can’t get her words out. 

Give her space

She needs the space to cry, to be angry at cancer/surgical outcomes/weakness. And then she needs to know you will be there. She needs to see “everything will be alright” in action. Not macho-man action, not big-money gestures action. Do laundry. Keep the kitchen clean. Pick up. Don’t let her see the house look like it should be condemned. 

Space is more than a concept

Respect her boundaries. Gaye didn’t want me to help her bathe. Our neighbor, Dawn, came to the house every day—after a full nursing shift—to help Gaye. Again, she kept Gaye’s eyes off of the suture line where her breasts had been. She teased Gaye about her different PJs every day, gossiped about the retired nurse down the block who was determined to come help…even as she herself recovered from her own, numerous, health issues. 

Give her space to watch the shows you don’t like. Even with a kitchen full of food, go get her favorite snack (even if it’s something you don’t care for) to give her alone-time. 

Give her room to feel her pain, fear, and despair. 

But don’t leave her there. Bring her back with conversation and little plans. Give her something to look forward to, even if it’s just a drive while you run errands. You’re the bungie cord. You let her get low and then you pull her back up.

You are, as Kurt Vonnegut wrote, a nation of two. Never lose sight of that and do not let cancer kill your loved one or your relationship.

Key takeaways:

• Good results or bad, your goal is to get your loved one home
• Even when the surgery is successful, everything has changed
• Gratitude is key to healing, so is grief
• You MUST be a constant when everything has changed
• None of it is directed at you, cancer is the enemy
• Let her feel what she feels, then bring her back home

Stay positive, stay strong. 

The photo at the top belongs to the author.

Love and Support are Imperative to Breast Cancer Recovery

Nine months ago, my wife Gaye underwent a double mastectomy (after her second breast cancer diagnosis in less than a year). The associated reconstruction failed. It has taken us this long to gather the courage to share our experience.

There’s no understating the degree of pain and suffering Gaye endured through the first four days of her double mastectomy and failed reconstruction. While the care she received on the Flap Unit improved, it was a low bar after the ICU nurses abandoned her on a med-surg floor without adequate staffing. Only the love and support of very dear people sustained us in those bleak days.

Our dear friend Shelly visited Gaye on the day after her complete revision. Still under heavy meds from what amounted to amputation, Gaye was in/out of consciousness. But Shelly came provisioned with a book and snacks. Shelly spoke with Gaye when she was awake and talkative and she read when Gaye was asleep. Most importantly, she was there for several hours so I could wash up, eat a bite, and take a nap.

Compassion in service to others is love in action

Our neighbor and friend, Dawn, visited Gaye the following day. Just as Shelly, Cheryl, and Linda had, Dawn talked with Gaye when she wanted to talk, made sure she had what she needed, and sat with her as she rested. Those wonderful people were more than company and more than a “patient-sitter.” They were lifeguards in the absolute best use of the term.

They made sure Gaye had water, ginger ale, and that she ate as much as she could of her lunch. They made sure if she needed meds or a bed adjustment, the staff were aware and followed up. But most importantly, they made sure that Gaye never woke up in a hospital room alone.

When a wound check was necessary, Dawn was there to hold Gaye’s hands, hear Gaye’s gasp and pull her attention away from the scar across her chest where her breasts had been. Dawn held Gaye as she cried and then redirected her to the business of life.

Family is not always where you expect them to be

On Sunday, Gaye’s oldest brother called to say he was on his way. He was the only one of Gaye’s siblings to visit. I worried for Gaye’s physical and emotional weakness. But the visit wasn’t about me and I had no business restricting access. I gave JP the room number. I also waited for his arrival and met him at the elevator.

Gaye was deeply hurt by the family disregard. She was also as angry, angrier even than I was and he needed to be ready to hear it, absorb it and deal with it. What he could not do was argue with her or upset her further. I made that clear as quietly and pointedly as possible.

He threatened to leave, and I pointed at the elevators behind him. There was nothing he had that she needed more than love and support. If he couldn’t be that person for her—after only seeing her once since her first cancer surgery—he could bounce. No one, least of all me, was begging him to be there. However, I strongly suspect that he was only there because someone else had guilted him into it.

I asked JP again if he could be the person Gaye needed him to be. He nodded and I stepped aside. I also waited in the hall as Gaye didn’t need my angry energy while talking to her brother.

Gaye unloaded on him about his distance. How no one in the family had been there for her during her first diagnosis and surgery—when she had been there for everybody—how none of them had been there for her this time. When he offered a half-ass defense of his behavior, she reminded him of his visit, where he had only barely sat down, only all-too ready to leave, and then hadn’t called or visited again. She reminded him of the funeral for a cousin’s husband—that everyone in the family had attended—two days before this surgery. How others had taken days off to watch bowl games. But no one had time, had even bothered to come see her.

After empty excuses, he buttoned up and listened without comment. In less than 30 minutes JP had all the reality he could stand. He left the room without a look back. I was furious. But that’s not what Gaye needed. She needed support, not anger. We received that support from so many people and that’s what I did my best reminded Gaye of in the wreckage of her brother’s wake.

Real family will make their presence known

I must note that Gaye’s younger brother T, while out of state, checked on her constantly. He called to talk to her and lift her spirits. He texted messages of support for me. Gaye had said at times that she felt like the cast-off sibling, but T made sure that she knew he loved her and she was not alone.

As I’ve noted, (but cannot acknowledge enough) we were blessed by the love and devotion of so many people who we considered friends but turned out to be so much more. Linda was the mother that Gaye so desperately needed in such harrowing circumstances. When Gaye and I both were too weak to stand, Cheryl, Shelly, and Dawn lifted us up and carried us.

Then there was the family we’ve never met face-to-face

Kari was one of the first people I friended on the platform formerly known as twitter, (many years ago). We also became close friends on Facebook. A true artist, she and Gaye connected over a mutual love of color and beauty. Kari checked on Gaye almost daily even as she struggled with her own health issues.

My scribble sister, Jennifer, had been in Gaye’s corner from the first diagnosis, sending thoughts and affection in the form of comics. Like Kari, Jennifer asked about Gaye constantly. She also regularly check in on me and offered her ear if I needed to vent. We are both pathologically introverted so that was a huge offer.

Our “foster” nephew Bryan, checked on us regularly as well, even as he was in the fight to wrap up his nursing degree and prep for state boards. Again, we never met him face-to-face, even though we live in the same city. But he and I had been Facebook family for years and he knew of Gaye from my posts and photos. His compassion and concern moved Gaye and I both to tears.

The love and support we received were instrumental in Gaye’s improvement and recovery. While a lot of what she/we experienced in the hospital was bad, the care we received from so many people was sustaining and uplifting. There is no overstating how much it meant to us both.

Takeaways:

• Bad things happen, as Iyanla Vanzant says, give it a name so you can address it
• Good things happen, too—don’t be so wrapped up in the bad that you fail to see the good
• Grace will present in the least likely appearances, that’s how love works
• People will let you down—usually because they’re fighting their own battles—let them go on their way
• Never loose sight of the goal—healing and recovery—stay positive and be that person for your loved one

Stay positive, stay strong.

The photo at the top, (l-r) Mari, Shelly, and Gaye at Shelly’s annual Halloween Carve-o-rama, (2017) belongs to the author.

Sometimes, Things go Right—Surgery Four

I woke to a text from Linda with Gaye’s new room number on the flap unit. After our horror story on the 21^st floor, I could only pray that things were better for her in her new environment. 

Stepping off the elevator on the 16^th floor was like entering another hospital. Where the 21^st floor had been dingy, dirty, and depressing, the 16^thfloor, aka the Flap Unit, was all light—gleaming halls, and smiling staff. Gaye was resting when I arrived. Linda told me the unit director met them on arrival.

Director P had heard how Gaye had been abandoned by the ICU and 21^st floor staff and she wanted Gaye to know that “everything would be okay now.” Registered Nurse G said he’d make sure of it. When I arrived, Linda said both had checked on Gaye twice in four hours.

Linda said Gaye had not eaten. I wasn’t surprised. Gaye is picky in the best of circumstances. Linda offered to get her anything she wanted but Gaye had been too tired and too loopy from pain and meds to eat anything. She had sipped ginger ale and eaten Italian ices that soothed her throat and gave her a little sugar boost. Nurse’s Aide SP kept her supplied in the strawberry flavor that Gaye preferred as well as several cans of ginger ale.

When Dr. M arrived to speak with Gaye, she said that she would speak with him alone. I walked Linda down to the lobby where her son Michael waited to pick her up, rather than hover outside the door. It’s no secret that many women face coercion from their husbands in healthcare decisions. I wanted no appearance of that behavior on my part.

By the time I got back upstairs, Gaye had declared her decision. Dr. M reiterated for my benefit that Gaye had decided to remove everything: the necrotic flap tissue as well as all remaining skin from her breasts. I knew she would opt to go flat. Dr. M continued to tell her that she still had options but he also respected her decision. Gaye wanted it all gone and she wanted to go home.

Evening brought a new shift of nurses and aides. Nurse SA looked at me like a headache she didn’t need. Way past used to that reception, I stayed out of her way and studied how she helped Gaye transfer from the bed to the bedside commode. 

Just as Gaye was unable to use her shoulder and abdominal muscles to stand, the nurse was unable pull her by her arms. Instead, rise was like an embrace. Nurse SA put her arms around Gaye’s shoulders and then Gaye rolled forward. They rose together.

Gaye is fiercely independent and would not want to hit the call button every time she needed to use the commode. I needed to know how to help her. So, I watched and learned.

Once they had gotten Gaye cleaned up for the evening and passed out dinner trays, Gaye told me she wanted something different. She wanted a charcuterie board from one of her favorite restaurants. I didn’t want to leave her alone.

“It’s safe here,” she said. “I can look out for myself for the 40 minutes it’ll take you to get there and back.”

If not already evident, I will do pretty much anything for Gaye and I made it back in 35 minutes. I was rewarded with seeing her eat for the first time since admission. Then I remember that I had fed her almost an entire omelet that morning. Gaye does not like eggs so it was closer to required maintenance than actual eating.

Now she had real food she could really enjoy: almond hummus and bread, peppers and olives, prosciutto and Spanish chorizo as well as two kinds of bread. Gaye loved to snack and the charcuterie board was her go-to meal. We talked as she ate. She said her breasts had gone from light brown, (her skin color) to inflamed pink to red and were now purple for lack of blood flow.

Then exhaustion as well as the pressure of an impending fourth surgery overtook her.

One of Gaye’s nieces called, at 8:30—at night. Before I could tell her it was too late for visitors, before I could tell her Gaye had a 6AM surgery time and was already asleep, the niece said she just wanted to check on Gaye because she couldn’t make it. Someone in the background said they were on their way to the club. I hung up. 

I watched TV and helped Gaye to the bedside commode and dozed. But mostly I worried. Gaye was so tired and frail after the previous 60 hours of trauma.

All too soon it was 5AM. Nurse SA took her morning vitals and asked if she had ambulated at all. Gaye replied she had used the commode twice. The nurse realized that we had managed rather than call her. She also realized that I had emptied the commode and set it up chucks pads for the next use—just as she had done. We still weren’t besties but the nurse did nod to me as an ally in Gaye’s care and not just another nuisance.

I waited in the room through Gaye’s fourth surgery. In less than three hours she was back. Dr. M said the surgery had gone well. Her vitals were strong and she was resting. She was alive and the dying tissue was gone. He said normally, they would discharge after 24 hours but he would take no chances. She was there for two more days just to be sure there were no further complications.

Dr. M looked like I felt. Far from chatty, he seldom spoke any more than was necessary however, it was obvious that he hurt for Gaye. She makes people happy. Like sunlight, you miss the warmth when it’s not there. After several minutes of sitting in silence, he said they still didn’t understand what went wrong. He had put in for a hematology consult but doubted that Gaye was allergic to heparin. He also said that in fifteen-years, he only had one other reconstruction fail. 

This was supposed to be the happy surgery that restored a patient after cancer. Dr. M expressed frustration but more than that he extended compassion. “I will be here when she is ready. I will make everything right for her.”

Linda arrived just before they brought Gaye back to the room. Gaye’s childhood best friend had called for Gaye’s room number. I gave her parking details and met her in the lobby. Cheryl was one of Gaye’s oldest friends and about the only one she was still in contact with from her hometown. Cheryl and Linda both dismissed me as they compared notes on friends in common.

I won’t lie and tell you I rested well but I could at least breathe. The 16^th floor staff was attentive and professional. Gaye was out of clot-territory and the danger it represented. 

We had a way forward. We had hope.

Takeaways:

• You are your loved one’s first line of defense, you can’t afford to hold grudges
• There are good and bad healthcare providers, their actions and attitudes will out one from the other
• Nurses, when adequately trained, supported, and ethical, are the patient’s natural ally watch and learn
• With Yoda’s grace, your loved one will come home and they will need your help
• Observe the nurses and learn how they help the patient, how they manage the patient’s environment
• Compassionate nurses are the heart of ethical healthcare

Stay positive, stay strong.

The photos above, Gaye at the head of the line, at Franklin Barbecue in Austin and Thank You to the 16th Floor, belong to the author.

When the Hospital Fails You—Surgery Day Three

On June 14, 2023 Gaye had a double mastectomy with reconstruction. It has taken me almost a year to get my courage to write this. We hope by sharing our journey, it will help someone else. I am also still trying to process my own actions.

*Trigger Warning* The following deals with medical distress. 

Dr. M met me in the OR waiting area at ten-until-ten on Thursday night. Gaye had just been through her third surgery in 30 hours. He looked exhausted as he got straight to the point. “Does Gaye have a heparin allergy?”

“No, not that we know of,” I replied.

Dr. M nodded. “She’s throwing clots. This sometimes happens when there is a heparin allergy but she is showing none of the other symptoms. We ran several units of blood through her, letting her bleed out the clots but it’s not enough.”

Scared to death, I said nothing. 

“I don’t want to keep doing this to her,” he continued. “We need to remove the abdominal tissue and the collapsed blood vessels.”

Still too scared to speak, I nodded. 

“But there are other options,” Dr. M said. “I can place spacers to keep the skin intact and viable and then we can attempt—”

I spoke my fear. “I thought I was going to lose her.”

Dr. M dropped his head. 

“I don’t care about reconstruction options,” I said, trying to reel-in my fear and anger. “I have to take her home.”

Dr. M nodded. “I will give her a day to recover from this. Then I will talk with her to see what she wants to do but the tissue is dying and it has to come out.”

“I understand,” I said, understanding nothing.

“Gaye no longer needs monitoring so as soon as a bed is available on the flap unit, they will transfer her out of ICU,” he said. “Probably first thing in the morning.”

Already thinking of what I needed to do next, everything he said mostly went over my head. Which was stupid of me and dangerous for Gaye. As I write this now, I still don’t remember how we ended the conversation. 

Dr. M left and I started texting the few family members, (a best-friend, a brother, a cousin, and an uncle) who cared. Then I found Linda and we waited for Gaye in the ICU room where she was to stay the night. 

The OR nurses wheeled Gaye in, while talking with the ICU nurses. They transferred Gaye into the ICU bed without even acknowledging us or, for that matter, Gaye. Immediately, Linda and I could see that something was wrong. The monitors alerted to Gaye’s elevated heart rate and blood pressure. I could tell her breathing was labored, and she began to convulse.

Linda demanded that someone help Gaye. The nurses continued talking, ignoring Linda. I found my voice and told them that Gaye was in tachycardia and she was convulsing. 

The ICU nurses finally took notice and I escorted Linda from the room so the two teams of nurses could complete the transfer and help my wife. They gave Gaye something for the convulsions and when we returned to the room, she had settled. Her heart rate was still well over 100bpm but Nurse Z said that was normal considering the amount of blood Gaye had received, recovering from the ventilator, and the trauma of surgery.

Again, Linda extended a mother’s love, talking to Gaye in comforting tones. Wracked with fear and exhaustion, I paced. Then Linda’s son Michael called to pick her up. Linda assured me she would be fine walking to the lobby and that I should stay with Gaye. She did let me walk her to the elevator.

On my way back, I overheard another nurse telling Nurse Z that if the floor wouldn’t accept report on the patient, he just take the patient there and dump them and deal with any pushback. That sounded horrific. 

Thankfully, not our issue, I thought. Then Nurse Z popped in and said a bed had opened up for Gaye and they would move her momentarily. I asked about Gaye’s condition: in-and-out of consciousness, high heart rate, high blood pressure, and labored breathing. Nurse Z assured me this was all normal for post-op patients. 

Then Nurse N showed up. He moved fast, disconnecting lines and monitors. They wheeled Gaye out before I could ask about the flap unit, really before I could say anything at all. At the elevator, Gaye asked for an Italian ice that both satisfied her thirst and soothed her throat. Nurse Z said she would get several from the ICU fridge and bring to us. 

The elevator door opened and I knew we were in trouble. Signage designated the 21st floor as a pulmonary unit. But from the nurses and aides all moving fast, to a patient pacing the halls, (ranting one moment and crying the next) I knew we had landed in the worst possible situation. 

From working my way through college at a hospital, I knew a med-surg unit (a catch-all term for any/all patients) when I saw one. We were the ones Nurse N said he would dump. And he had.

I should’ve protested. I should’ve demanded that they return Gaye to the ICU. I should have done more. There are no excuses that matter. The bottom line is I failed my wife.

Nurse N said to make sure all their pumps (IV, compression, etc) came back with them. The two nurses and an aide transferred Gaye and then they were out of the room and gone. Gaye complained of pain and I hit the call button. A same nurse’s aide, with more tattoos than Post Malone, walked in and mumbled about finding someone. 

After ten minutes, I went to find the charge nurse. Nurse Z popped off an elevator and handed me two of the ices that Gaye had asked for then fled. She had her backpack with her. When I asked the charge nurse for pain meds for Gaye, I also asked for the house officer.

When all else fails, the house officer, (usually a senior nurse who is both a senior manager and supposedly, a patient advocate) is your lifeline. Or is supposed to be.

The charge nurse gave Gaye something for pain. Gaye ate one of the Italian ices and then she was out. Over the long night of alarming IV pumps, the crying psyche patient pacing the halls, and Gaye’s fitful sleep, I wanted to scream and rage for not doing more. 

But just as I had seen enough to know a med-surg floor, I had also seen patient-family removed when they let their fear and temper get away from them. I had not advocated well for Gaye but I could do nothing if I got bounced out by security.

By 4AM Gaye had swollen to the point that I had to cut off several of her armbands as they were cutting into her skin. I got water for her. Through it all, that damned psyche patient kept the halls hopping.

The house officer never showed up but I was ready for the morning shift. Gaye was unwilling to wait for shift change. She called for the charge nurse at 5AM and demanded care. Post Malone, the nurse’s aid came with the charge nurse and attempted to deflect, asking what she meant that she had had no care? What did she mean she felt constricted? He even shifted the sheet back and forth across her for sarcastic emphasis. 

Gaye pounced on his sarcasm. She told him not to play evasive games with her, he knew what she meant. Before he could attempt his condescending tone again, Gaye told the charge nurse that in her own career as a registered nurse, she had never abandoned a patient like they had abandoned her. That shut down all the cute-shit.

“Would you want to be treated this way? Would you want your family treated this way?”

The instant Gaye identified herself as an RN, Post Malone fled the room. Gaye asked the charge nurse why no assessment had been done? Why had no vital signs had been taken in eight hours? Why she was just thrown in the bed and tangled in tubing and bedding? Why was something sticking her?

The charge nurse and I untangled Gaye from her bedding, surgical drain lines, and associated tubing. We found that what was sticking her was the over-taped end of the IV line that wasn’t even connected to an IV bag. The bedding looked like a lost fight. 

Dr. SF arrived and further lit a fire under the staff. The sequential compression devices on Gaye’s legs—intended to protect her from further clots—had never been connected to a pump after Nurse N took “his” pump back with him. 

Within the hour, the director from med surg floor had come to talk to me. I made him wait until I knew Gaye was comfortable and Linda had arrived to watch over her. 

Seated in his office, I listened to Director W’s excuses. The unit was short-staffed. There was a lack of nurse-training. He himself was interim director. Yes, Nurse N had been told by the house officer not to transfer Gaye until a bed was open on the flap unit but the ICU needed beds. The house officer had not returned Nurse N’s call because he/she expected Nurse N to follow instructions. 

Director W talked and talked until he talked himself out. Then, I read the notes I had made over the long night. We walked past three empty beds on our way out of the ICU. There was no shortage of beds. The ICU nurses had their bags and were leaving after clearing the unit. The house officer hadn’t returned my call either—because he/she didn’t want to hear my complaint. 

This was not simply bad care, this was patient abandonment and if Gaye suffered ANY complication I would take the story to one of the many “investigative” reporters who LOVED hospital malfeasance and the ratings those reports garnered in Texas Medical Center. I would also file a written complaint with CMS, (Centers for Medicare and Medicaid Services) about patient abandonment. Within two hours they had a bed for Gaye on the flap unit. 

Gaye and Linda both insisted I go home, get cleaned up and get rest. As low as I felt, it seemed like leaving the scene of a crime but I left all the same.

Key takeaways:

• Never, ever, leave a loved one alone in the hospital—if someone isn’t there to advocate for them, the staff isn’t likely to
• Know your rights, I should not have allowed them to take Gaye from the ICU room until I knew where they were taking her
• As long as you are respectful, (keep your voice and temper under control) they cannot remove you 
• The house officer is the boss failing that, you can demand that nurses contact the doctor before the patient is moved—which is what I should have done
• CMS is a federal agency that can shut a hospital down—a CMS investigation scares administrators more than lawsuits or bad press
• Their staffing issues are not your problem but your loved one can be a victim of them

Sometimes you, your loved one, and your physician do everything right and everything still goes wrong. Give yourself grace and if you’re the one who stumbles, get your ass up and get back in position to advocate for your loved one. 

Stay positive, stay strong.

The photo at the top, “Gaye at the Rodin in Philly” belongs to the author.

Sometimes You do Everything Right and Everything Still Goes Wrong: Surgery Day 2

Gaye is in surgery for a double mastectomy, today. I am soliciting positive thoughts for my brave, brave Missus.

When I posted the above on Facebook, at dark-thirty-in-the morning, Wednesday, June 14th, it was done  as a “knock on wood” gesture. You’re always nervous when a loved one goes under the knife, especially for surgery to treat a second occurrence of cancer. I’d solicit every good gesture I could manage.

I told myself there was little need. Gaye’s oncology surgeon, Dr. B, is first-class, a pioneer in fact. Dr. M, Gaye’s reconstruction surgeon is renowned for his work. Gaye was in the best possible hands. What could go wrong?

As it turns out, a lot.

Gaye was still out after almost 16 hours of surgery. I woke early on Thursday the 15^th to Dr. M’s Surgical Fellow, (a doctor who has completed residency and is mentored by a more experienced physician in a specialized field). Dr. SF and a resident were there to perform the venous doppler check on Gaye’s reconstructed breasts.

Foggy as my head was, I remembered the excellent nurses in the surgical care unit performing the same test, along with vital-sign checks Q4 (every four hours) throughout the night.

Dr. SF passed the wand over Gaye’s right breast and a heartbeat-like pulse indicated venous blood return. He had to hunt for the same pulse on the left breast. His expression told me something was wrong. Dr. SF made no attempts to assure us, he simply said that Dr. M would have to perform the exam when he made rounds.

In a matter of minutes, Dr. M was bedside. By which time Gaye’s left breast had begun to darken. There was a clot somewhere. They wheeled Gaye back to surgery as Linda arrived.

We vacated the surgical care room so they could get it ready for another patient. Linda and I camped in a postage-stamp sized waiting room while Gaye was in surgery to clear the blood clot. Due to her own health issues and the recent death of her husband, Linda understood the necessity of clearing the blood clot. She also understood the need to have someone nearby. 

What Linda struggled to understand was why none of Gaye’s siblings had shown up. None of her nieces, though three lived in the city, had called. I remember shrugging, too scared and too tired to voice my anger. Besides, who needed them? 

Everything had seemed so certain. We would have the surgery. I would take Gaye home in three days, (there was no possible way we would need four). We would eat soup dumplings and watch movies and start our recovery. Just like last time.

Except now none of that was certain. I really didn’t care about her siblings or nieces or anyone other than Gaye. Nothing and no one else mattered.

They brought Gaye back from surgery in just four hours. Dr. M sat with me and Linda and said he had cleared the blood clot. She received heparin to reduce the risk of further clots. However, we were far from home-free. The next 12-to-24 hours would determine success.

Racked with fear, I didn’t want to leave. However, I had also been in the same clothes for 24 hours and I stank of anxiety. Linda insisted I go home, get a nap and eat a decent meal, take a shower and put on fresh clothes. She promised to call me if anything changed.

I needed to go home. Our neighbor, Dawn, had agreed to feed our cats in the evening. I had reasoned that there was no way I wouldn’t be able to feed them in the morning. Except I hadn’t that morning. 

Plagued by leg cramps from where the leg rest on the recliner nailed my own circulation issues, I needed sleep. I needed fresh clothes and really needed a shower. Still, I felt scummy for leaving my wife’s side. 

I wouldn’t be gone long, I reasoned. All I needed to do was feed the cats and get cleaned up. I could nap in the hospital room chair as well as at home. Working on low/no sleep is no new trick for me and I have done wonders on 20-minute naps.

My mistake was sitting down on the bed to take off my shoes. I woke up three-and-a-half hours later with three cats crowded around me, also asleep. They missed her but I would do. 

Scrambling, I rushed through showering and dressing and back to the hospital. I know I ate something that day, but I can’t tell you what it was.

Linda was still at Gaye’s bedside when I returned. As was Gaye’s friend and mentor, Ann. Best of all, Gaye was awake. Sorta. In and out, she gave me a smile and asked if I was okay. She had no memory of Dr. M’s visit or the second surgery.

Then Dr SF showed up with his resident in-tow. The nurse had called based on an iffy-doppler test. Dr SF, no less grim than earlier said Dr. M would be there shortly. Gaye held up better than I would have but the exhaustion and fear ran through her voice when she told the man he had pretty hair and thanked him for checking on her. 

Again, almost immediately, Dr. M showed up.

We cleared the room for him to examine Gaye.

Overwhelmed, Ann (who had lost her husband, two months prior) apologized but said she needed to leave. Just as with Linda, Ann’s willingness to make the trip, to see Gaye, made all the difference. My heart broke for the visible pain that seeing Gaye in such a weak condition had done to her.

Memories can be motherfuckers. Were I not so numb with fear, I would’ve broken down for the lost look on Ann’s face. I walked her down to the lobby and waited while the valets brought her car.

I got back in time for Dr. M to confirm that there was another clot. This time, in the right breast. Gaye had to go back to surgery. She didn’t want to go without seeing Linda again. I waited while Linda extended a mother’s care to Gaye.

Linda stayed with me. Together we kept another near-silent vigil. Gaye endured her third surgery in 30 hours.

The photo at the top, Gaye out on the town, c. 2010 belongs to the author.

Second Surgeries, Second Chances, Worse Waits

As we had with the first surgery, we got an early start. Gaye and I were out of the house by four-thirty. We picked up our dear friend, Linda, and then flew for the Texas Medical Center. 

Our neighbor, Dawn was unable to join us this time and I worried for being a good companion for Linda. As it turned out, conversation was the least of our problems. 

Gaye’s first surgery, the lumpectomy, had been 1-2-3, easy—types the guy who didn’t get cut. It seemed I’d no sooner valeted the car and finished my coffee and four-hours had passed, I had her back, and we were on our way home. But this time was completely different.

I dropped Gaye and Linda at the hospital entrance. Rather than valet the car, I opted to park in the garage, (more on that in a minute) so I wouldn’t have to pay for the valet twice when I took Linda home. Unlike outpatient surgery, the main hospital was strictly business. 

No cushioned chairs and soft lighting, here. Bright fluorescent lights and hardback plastic chairs underscored the mood in the room. Please note: I will never minimize anyone’s surgical procedure. We were all—mastectomies, open-heart surgeries, total-knee-replacements—in the mix together.

TVs provided a distraction but nothing dulled the desperation. If the searing lights illuminated the gravity of purpose, the hospital staff, unlike the day-surgery staff, were far more professional and compassionate. Where the day-surgery clerk had tried to shake Gaye down for $4000 (that we had already paid) the hospital staff invited each patient to a private office to discuss their insurance and financial obligation. 

Then it was Gaye’s time to go to the back for pre-surgical preparation. The pre-op nurses were aces and in high spirits. Then Gaye’s nurse missed the vein for her IV. And then she missed it again. The second nurse, “H,” was a ray of sunshine. She was also a former coworker of Gaye’s from two-hospitals ago. Best of all, she got the IV on her first attempt.

No bad omens, we said.

Way-too soon, it was time for Gaye to go back. In a rare moment of nerves, she wanted to see Linda before she went. I nearly sprinted for the waiting area. Linda, dependent on a cane, moved as fast as safety would allow.

I cannot overstate how much Linda’s presence meant. No sister, no aunt, no neice or cousin came to be with Gaye in this distinctly woman’s time. But Linda was there and she rushed to Gaye’s side. Her affection was so genuine when I guided her back to the waiting room, Nurse H asked Gaye why she called her mother “Linda.”

After getting Linda back to the waiting room, I went to wait with Gaye. We talked about meal plans and post-op plans and about bitching cats but it all felt forced through a screen of anxiety. The nurse anesthatist was a cold-wet blanket on our chatter. It was time for Gaye to go.

I walked along side the stretcher as far as I could. Then we were at the elevator to the OR. I put on my best smile and kissed Gaye goodbye and reminded her that I love her.

Never one to miss a chance to tease me with my love of Star Wars, Gaye smiled and said, “I know.”

Then she was through the elevator doors and gone.

Following Nurse H’s instructions, I found Linda and we went to the OR waiting room. As with the pre-op waiting room, it was packed and tense. Televisions dueled to distract. But everyone’s eyes were on the surgical monitor, identifying patients by initials and status: holding, surgery, and PACU (post anesthesia care unit). 

The waiting room was freezing. However, there was a coffee station and the clerk offered blankets. Linda dozed, sitting upright in the chair. Then I dozed. I heard nothing from Gaye’s sisters. I texted her cousin, Caroline, who was unable to make the trip. But no one else. Then my facebook buddies asked, one by one, “How is Gaye? How are you?”

I chronicled our journey as much to occupy my mind and counter my nerves. At the six-hour mark, Dr. B emerged from the O.R. in high-spirits. Linda joined me for Dr. B’s update in the consultation room. 

Gaye had come through the double mastectomy without a hitch. Dr. M had scrubbed in and started the DIEP Flap procedure to reconstruct Gaye’s breast. Dr. B advised us to go get lunch as we still had ten-to-twelve hours before Gaye would come out of surgery.

While I’ve heard folks say they were too nervous to eat, that has never been me. Until that day. I didn’t want food. I wanted my wife back. But Linda insisted that I would be no good to Gaye if I got snappy from not eating. So we went for lunch.

I offered to take Linda home but she insisted on staying with me. There is no way for me to convey how much her calming, reassuring presence meant. Fed and caffeinated, we returned to the hospital. I valeted my vehicle and then realized they charge one flat fee, per day. You can go in/out as much as you like/need.

Leave the firearms at home.

The attendant shocked me by asking if there was a gun in the vehicle. But ~sigh~ this is Texas. If you have to have a store-bought dick with you, don’t go to the hospital or, at least, don’t valet your car.

If the morning crawled by the afternoon absolutely dragged. One-by-one, the other family members dwindled away as their loved-ones came out of surgery. Then I received a texted, “get off social media and call someone…”

In the sting of disregard from Gaye’s sisters, I had forgotten that she did have at least one sibling who cared. Gaye’s younger brother lived out of state and couldn’t make it for the surgery. Still, he wanted to know how she was and where we stood in the process.

Sidenote: in the days/weeks that followed, I heard from a couple of Gaye’s family members who didn’t like the way I handled updates. None of them were there. Almost all could have been. For a couple of them, it would’ve been quicker than their commute to work. But they were not there. Should you find yourself in this situation, have a contact plan/list and make peace with whoever is omitted. Mostly, don’t worry about who’s not there.

At six PM, the waiting room attendant advised us and two other people waiting for family that the OR waiting room was closing for the evening. They gave us directions to the PACU (post anesthesia care unit) waiting area. Linda offered to treat me to dinner but I had no intention of leaving the waiting area. If there were going to be problems, it would be with the reconstruction and I regretted leaving for lunch.

(l-r) Michael, Linda, Gaye, and some schlub, c. 2015

At eight-thirty, Linda’s son called to say he was coming to pick her up. I walked Linda to the lobby just as Michael pulled up. As spry as Linda is, considering age and chronic health conditions, she looked beat as I helped her into the car. I knew how she felt.

As with the OR waiting area, I watched people dwindle away as family members received room numbers and left to see parents, children, and spouses now safely out of surgery. By ten PM it was just me and a custodian who chose that waiting area to watch the news. By eleven it was just me. 

Finally, I got the call. Dr. M met me at the waiting area for another unit. Gaye was clear and the reconstruction appeared to be good. Dr. M said Gaye would be in the surgical care unit for at least a day to be safe, (after almost 18 hours of surgery) and then she would be transitioned to a specialty-care floor. Best of all, I could stay with her.

Though still heavily sedated, Gaye’s smile cut through my own fatigue like the morning sun. The no-nonsense nurse looked at me like another problem but I assured her, I would not be in her way or pester her for anything. I pulled the chair beside the bed, (on the opposite side from the IV pump and monitors). Gaye reached for my hand and we both passed out from a very long day.

Key takeaways:

• Valet park, it’s just so much easier
• Have a contact list and plan
• You can’t please everyone—and you don’t have to—you’re there for one person only
• Bring chargers, ten hours turned to eighteen really fast
• You’re gonna be in your shoes/clothes a LONG time, dress comfortably
• Take a friend if you can, the burden shared is halved
• Don’t get in the nurses’ way, they can’t take care of you and your loved one

Stay positive, stay strong.

All photos belong to the author.

In the Battle Against Breast Cancer, Support is Everything

(l-r) Michael, Linda, Gaye, and some guy c. 2014

As the surgery date approached, I mapped out further plans. Gaye had made arrangements for delivery of a zero-gravity recliner. She had ordered a robe with interior pockets for her surgical drains. We even got some new pajamas in bright colors/prints to lift her mood.

Anticipating her needs, I ordered a stool for the bathtub. While there are actual shower chairs, they are large and not easy to move around. Most importantly, Gaye didn’t like them. I found a nice solid-wood stool on Amazon. It easily fits in our tub. I could lift it with one hand and move it effortlessly in our small guest bath. 

Forever means something different to someone fight cancer

In her continued battle against institutional design, Gaye refused a bedside commode for the house, opting instead for a booster seat for our toilet. These things may seem small but they can be a huge deal for someone battling a long illness. Environment matters. 

Thirty-minutes—model doesn’t even require a wrench—to install and a lifetime of benefit.

I changed out the showerhead from the original builder-grade nozzle to a snazzy model with multiple shower settings that also detached for use as a shower wand. I also bought a third set of sheets that matched nothing else in our house, (supply chain issues, yo) and dug out the scarcely used guest towels. I planned on changing out her sheets daily as before and I wanted her to use the softest, least worn towels we owned.  

Just as before Gaye wanted family around. And ~sigh~ just as before, most of Gaye’s siblings were MIA. One sister repeatedly asked if the insurance wouldn’t “send someone to help out.” Further, she couldn’t drive, she had no way to get there, and really couldn’t take the time off from work. Note: neither old nor helpless, no matter how that reads.  

“When someone shows you who they are, believe them.” Maya Angelou

The oldest sister cut it even cleaner. She had no contact with Gaye, since before her first surgery. Then, out of the blue, she sent Gaye a photo of their recently deceased cousin. In the coffin. Days before the second surgery. It was not a coincidence. 

Gaye’s older brother had likewise been silent since a cousin guilted him into a visit after Gaye’s first surgery. Their uncle had attempted to get him out to a family event. Her brother agreed, then lied about not being able to find us. Gaye’s calls to him went directly to voicemail.   

Only Gaye’s younger brother expressed any regrets, unable to be there because he was out of state. He also made it clear he wanted to know when she came out of surgery.   

Family is what you make it.  

My brother Paul and my brother-in-law Rick.

My brother, Paul and brother-in-law Rick came for a visit. Their friend Mary, who sprang to support Gaye in her first diagnosis, made an hour-plus drive to have dinner with us. I made a beef-short-rib ragu and we got Gaye’s favorite cake from our favorite bakery. Then we watched movies, gossiped about politicians/celebs, and laughed about pets. 

On the down-hill run to surgery, Gaye’s favorite cousin came to spend the day with her and they caught up over lunch while I was at work. Gaye’s uncle came to see her and hosted a gathering of extended family. Gaye reconnected with another cousin there that she had lost contact with years ago.  

She also worked out other plans without telling me.  

As I have previously written, I do not believe in leaving people alone in a hospital. No matter the facility or its reputation—things simply go wrong. Someone needs to be there.  

That’s me, “someone…”  

Gaye knows, (from years of clinical experience) the toil that sitting a vigil like that takes. She also knew that no matter what she said about being fine (after the first day) to be on her own for a few hours, I would not leave her by herself in the hospital. So, she called for backup. 

Linda, Gaye’s surrogate mother, would be there, of course. While she was knee-deep in family-health issues of her own, our neighbor Dawn immediately said she would feed our fur babies and take a shift. Gaye’s best friend, Cheryl, also said she would be there. Our dear friend, (and my scribble sibling) Shelly jumped at the chance to be there for us.  

Gaye and Shelly at Shelly’s annual Carve O’Rama

Love in action

It’s no little thing, when everyone is too busy and too stressed and spread too thin, to reach out and offer something immediate. Don’t get me wrong, I’ve made the “let me know if I can do anything” soft-lob myself when I had NO idea what to do.

But to say, “I’ll feed your cats,” or “I’ll bring you a meal,” or “I’ll give your husband a couple of hours away” is HUGE.. 

Cheryl recently lost her mother and her generosity of time and support meant the world in the wake of her own grief. Shelly had just started a new job, dealt with her own health issues but still insisted on supporting us through scary times. Dawn—aforementioned family crisis—couldn’t be there on surgery day. Still, she insisted she would be there for us, as we had been for her. Linda had supported Gaye from childhood and had no intention of slacking now. 

They all pulled together to support Gaye. They pledged days from busy lives—to give me respite. All so I could go home, clean up, take a nap, and put on clean clothes.  

In the hectic days leading up, Gaye finalized her preparation. 

Surgery would be anywhere from 10-14 hours in total. She would be in a critical-care unit for at least a day where specially-trained staff would monitor circulation to her reconstructed breasts. Then, once the doctor was satisfied, Gaye would transfer to a floor designated as the Flap Unit, to receive specialized, reconstruction-directed care.  

By day-two, you and/or your significant other will want these.

We’ll bring our own 

The hospital would provide for her basic needs but there were still some comfort items Gaye wanted. She ordered comfort wipes, (like adult baby wipes) to freshen-up with until she could manage a bath. Disposable toothbrushes would allow for the comfort of a clean mouth without needing a sink and running water. She also wanted slippers so she wouldn’t have to track dirty socks back into bed once they started walking her around the unit. Hospitals, (in theory) have all of these items but again, Gaye has seen the effects of perpetual shortages and busy staff. 

Gratitude in practical application

Finally, Gaye put together her gratitude bags. For each person who pledged to sit with her—and give me a break—Gaye made a personalized goodie bag of Tony Moly facial masks and a gift card to the individual’s favorite restaurant. She looked forward to presenting the bags when each person came to visit with her. More than just an expression of gratitude, I think Gaye wanted her dear ones to know she was still “her,” to put them at ease.

Even support angels need self-care.

It’s a beautiful gesture. It is also indicative of the love that Gaye exudes. She cherishes her circle of friends and family. Rather than give into the pain of sibling rejection, Gaye chooses to embrace the love and support from the people who rallied around her. 

Key takeaways: 

• Get practical, bathrooms are big hazards for post-surgical patients, be practical 
• Family support is key to recovery—but family isn’t always blood 
• Celebrate your days, every one of them 
• People want to help but don’t always know how—get specific with needs
• Caregivers need care too, plan for respite care 
• Plan for needs while in the hospital, they run out of stuff 
• Be grateful, in all instances, in every day
• NEVER, EVER, LEAVE A LOVED ONE ALONE IN THE HOSPITAL  

Stay positive, stay strong.

All photos courtesy of Gaye McClellan.

Second Surgery, New Game Plan

The ramp-up from diagnosis to surgery went much faster the second time around. Of course that was mostly due to just how frightening a second cancer diagnosis is. There were no clinical trials for Gaye to participate in which further sped the day.

We had just enough time for the necessary preparation for Gaye’s second post-surgical recovery.

Both Dr. B and Dr. M had given us clear pictures on what to expect. While the lumpectomy and reconstruction was a day-surgery procedure (3-5 hours), the double mastectomy and reconstruction would be a twelve-hour procedure, minimum. Gaye would be in the hospital for four days to guard against infection with an early-release possible on day three. 

The real trials would begin with recovery at home.  

Make no mistake, Gaye’s first recovery had been far from easy. However, the prospects of recovery from a double mastectomy and reconstruction using extensive tissue grafting from her abdomen represented huge challenges. Physical and emotional challenges.

Gaye wouldn’t be able to pull or push herself up with her arms for several weeks. She would not be able to use her abdominal muscles to stand or sit. How do you bathe yourself? How do you comb your hair? Feed yourself? Wipe your nose?

Neither doctor soft-soaped the pain she could expect. Hell, it had been almost a year just for Gaye to experience a slight relief in chest pain from the lumpectomy/reconstruction. Prospects didn’t seem fun. Upside, we had some ideas toward mitigation.

Make your bed choice carefully.

While Gaye had sat up on bed using an armchair pillow to sleep after her first surgery, we both knew that wouldn’t work this time. Aside from the lost sleep, there was no way to (safely) guarantee that she wouldn’t slump over or worse, fall out of bed. Yet, all the recovery literature stressed the importance of maintaining a lawn-chair position.

Nice for watching TV in bed, NOT for post-surgical sleep.

From taking care of DIEP Flap patients, Gaye had a plan: a recliner. Medical-grade recliners rise to lift or receive the patient. Not only does the recliner support the lawn-chair position, it’s almost impossible not to sit in the lawn-chair position.

Rent or own?

For a quick minute, Gaye considered buying the recliner. But a recliner would stick out in our living room like the proverbial sore-thumb. Further, $1500 would go a long way to the bathroom remodel we had put off when Gaye was first diagnosed. 

If not clear, this chair is a life-saver.

Plus, a rental would be a third of the cost, which insurance would cover. Even better, the medical supply company delivers, sets up, and then carts away. Just that easy.

Basic maintenance isn’t all that basic when you can’t do it yourself.

Gaye had no intention of turning me loose with a comb, (I only half-comb my own hair most days). No. She had a plan. A group of women from multiple countries had opened a braid shop in our community.

Braids are neat, low-maintenance, and pretty. Win, win, win. 

Bath wipes provide a quick and refreshing clean up when you can’t make it to the bath/shower. Disposable toothbrushes give you the comfort of fresh teeth without having to stand at a sink. 

A friend when you need one.

We also were advised to level up on our teddy-bear game. The small bear we bought prior to Gaye’s first surgery had been highly useful protecting her sensitive chest from seatbelts. But all the literature said she would need something more for her abdominal wound. A bear from GUND, a Canadian company, came highly recommended. 

Highly—not accurately—recommended.

Gaye also knew that, unlike the surgery, she would have vacuum bottles to facilitate draining fluid from her wounds. The drain lines ran anywhere from 12 to 18 inches from the incision sites to a small plastic bottle. They are intended to hang as an aid to gravity. 

It’s all fun and games until the drain snags on something.

So, that’s a solid “no.” Instead Gaye found a robe with interior pockets from a company called Just Us. The pockets hold the bottles secure. No snagging, no tangling, no pulling.

In short order, we had the chair set up. Gaye got her robe with pockets. We even got some new PJs to brighten her mood once the heavy lifting was done. Leaving only the heavy lifting yet to do.

Key takeaways:

• Listen to you doctors to know what to expect both in the hospital and after
• A recliner will help with comfortable rest and limited mobility 
• Rentals are cheaper (and often easier) than buying
• Your insurance may pay for the costs
• Plan for being immobilized and for basic needs
• A little comfort goes a long way

Stay positive, stay strong.

Reconstruction or No Reconstruction, a Personal Decision

Gaye struggled with indecision in the days following her consultation with Dr. M, the reconstruction surgeon. She had intended to go flat. Had stated that to Dr. B, the oncologist, upon her diagnosis. Then she stopped talking about it.

As previously noted, only 40 percent of women opt for reconstruction after mastectomy. Every woman’s decision is based on their circumstances. Whether the determining factor is financial or emotional, a matter of support or lack thereof, the decision is the woman’s decision. Full. Stop.

Gaye had been certain of her decision until she reviewed her options with Dr. M. You might think that her reconsideration is based on a hard-push sales pitch by Dr. M. Maybe he talked her into it.

Yeah, nah…

Dr. M is a physician of few words. He explained Gaye’s options in brief, concise clinical terms and statistical outcomes. That was that. Gaye’s indecision, as well as the roots of that indecision, remained locked in her silent deliberations.

Normally conversive, chatty even, Gaye only goes silent in the presence of new people or when something weighs on her. Her silence drives me nuts because as often as not, she is dealing with pain or worry on her own rather than share her troubles.

I try to give her room to process and then tell me what, when, and if she chooses. My results are mixed. It’s difficult not to press when the person you love most in the world is clearly troubled. Still, I do try to give her space and not push.

Then, in the middle of our afternoon walk, she started talking. “Some women simply don’t want to do reconstruction.” 

Unsure of what to say, I kept my mouth closed and listened.

“It’s a hard recovery,” she continued.

We were weeks away from the scheduled double mastectomy that would remove both of Gaye’s breasts. After her second diagnosis in less than a year, Dr. B the oncology surgeon, agreed with Gaye that it was the best decision. 

“Especially the DIEP Flap,” Gaye said.

The DIEP flap procedure is surgery where blood vessels, fat, and skin from the lower belly are relocated to the chest to rebuild breasts after mastectomy. It is, as it sounds, a lot. 

“Is that the option you’re leaning toward?” I asked, afraid to pressure her one way or the other. “Or the one that concerns you the most?”

“It’s the gold standard and really the best option for me,” she replied. “If I do reconstruction at all.”

We were just days away from the time where Gaye would have to decide on which—if any—reconstruction she would opt for.

“We can reschedule if you need more time,” I said, feeling stupid the instant the words were out of my mouth.

Gaye shook her head. “I’m scared. I want the cancer gone.”

I nodded in affirmation.

“I won’t be able to take care of myself,” she said.

“So, I’ll take care of you.”

“That’s sweet,” Gaye replied, in the same tone you’d use with a toddler. “But it’s not just bringing food and walking me around the block. If I choose the DIEP Flap I won’t be able to raise my arms. I’ll have to sleep in a chair because I can’t use my abdominal muscles to get up. I won’t be able to take a bath, I won’t be able to comb my hair, nothing.”

“I’ll take care of you,” I repeated.

“I don’t want that,” she said finally. “If I decide on the DIEP Flap, I’ll come up with something.”

Rather than debate her, I buttoned up. Gaye would have to find her way to trusting me as caregiver as much as she trusted me as husband. That level of trust is difficult under the best of all circumstances. 

Having been on the opposite end of that prospect, I don’t think it is a matter of doubt that the person will be there for us. It’s more about what that person will think of us after. Will that spouse, that family member, or that friend think less of us? Will they respect us less? Love us less?

Healthcare professionals feel this much more intensely than the rest of us. They see people at their worst. They render care to the disoriented, the combative, the “emitters,” who through no fault of their own—psychological episodes, medication reactions, altered mental status subject to other health conditions—are often a challenge to care for. 

Patient X pulled their feeding tube out immediately after you placed it? Pulled out their IV after you spent an hour finding a good vein and the right needle? Need a bedding change after you just got through changing it out? 

For most doctors, nurses, and paraprofessionals that’s Tuesday. They shrug and push on. But they have also seen the horror on the faces of parents’ families—the people who are supposed to take care of that person at home. 

No one wants to be the person whose needs are that profound. No one wants to go from beloved to burden. Medical professionals certainly never want to see that horror on their loved-ones’ faces.

From over ten years in emergency room care, the PACU, and home-healthcare, Gaye has seen the good, the bad, and the squeamish. Her concern about me, (NOT a medical professional) was rooted in been-there-saw-that pragmatism. 

Gaye stopped walking and turned to me. “I don’t want to lose my breast.”

The honesty in her voice stabbed me in the heart. “I know.”

“When I told Dr. B that I wanted to go flat, it was a knee-jerk reaction to fear. I don’t want to die of breast cancer,” Gaye said. “Then, when I realized that I had options…”

I nodded. I was with her as each diagnosis landed, when she got the prognosis for treatment and reconstruction. So, I had a clear idea of the feelings she struggled to verbalize.

“I feel selfish just saying that,” Gaye continued. “So many women have no reconstruction. Caroline, my cousin, didn’t have reconstruction.”

Indeed, Caroline had breast cancer, years prior to the law requiring insurance companies to pay for reconstruction. Gaye knew that so, yeah, yap shut.

“But that wasn’t an option for her,” Gaye said. “It seems like a betrayal to her and so many other women.”

When she said nothing else for a minute, I realized that she was asking for my opinion. I answered her statement with a question. “Caroline has always been in your corner. She’s been at your side since your initial diagnosis. Do you think she felt betrayed when you had a lumpectomy instead of a mastectomy?”

“No, you’re right.”

“Survivor’s guilt is real,” I said, worrying about being “the man,” who overtalks a woman.

Gaye said, “It’s that, some. But it’s more than that, too.”

We continued to walk and I continued to wait. Gaye had been raised to be “less than” other members of her family. She had been conditioned by society to be less than other women. I could offer nothing in her battle with “good enough,” and/or “deserving enough,” except to listen to her and hold her purse while she fought that battle.

“What do you think?” She asked. “I mean about reconstruction?”

“I think it is your decision.”

“This is where I need your opinion. I know it’s my decision but I need to know what you think.”

“I need you cancer-free. I want you to be happy with the outcome,” I said. “I will support any decision you make but I won’t tell you what to do.”

“I want the DIEP Flap,” Gaye said. 

And, that was that.

Key takeaway, the decision to seek reconstruction or not often hinges on multiple factors:

• Financial/insurance
• Recovery time
• Support/lack thereof
• Fear

It must always be a woman’s decision.

Stay positive, stay strong. 

The photo at the top belongs to my Missus and is used by her very kind permission.