A Cancer Journey of Heartbreak, Love, Resilience and Hope

Dave and Me During the Last Week of Our Packing Up of the Family’s Summer Home

On Wednesday January 3rd, just as I was rolling off the couch from having been exhausted up to my teeth from the big Christmas rush on the mountain, I learned some news from my brother, David, that has forever changed our lives. 

I knew he was feeling sick since December 12th but I was so busy working as a ski instructor in Telluride at our peak time, that I couldn’t make any solid offers of assistance until the big holiday push had passed. I then suggested to drive up to Aspen and take care of him, do some cooking and shopping and provide whatever assistance I could to help him get back on his feet. Little did I know how serious it was. Little did I know what was brewing inside of him would be the dreaded “big C.” 

Pay attention:  This is how quickly cancer can take hold and how important it is to mobilize yourself to figure it out. It is happening to so many people that we all have to have some measure of preparation and most of all, a keen awareness that doctors can’t always get it right. I hope that my story will provide that for you. This is also a tale of how people respond to a cancer diagnosis:  some show up big time to help while others use it as an opportunity to further their own agendas. 

Here’s my texting exchange with my brother from that day.

Dave:

B …that is a very generous offer, but I think I will continue to be able to manage. If I was really in need, I would gracious ly accept. Take advantage of your time off to get rested and take care of your own accumulated work load😊 

Me:

OK, keep it in mind. Maybe we should find out if you’re contagious first. But know that aside from a 5-hour drive, I could easily drop in to provide some assistance. Please let me know how it goes at the doctor’s today!

Dave:

Will do

B…still at the throat Dr…not good news…he thinks I have cancer and wants to do a biopsy Friday…so if your offer still holds to come up, I will graciously accept…fill mom in so I can save a step

Of course I left for Aspen the next day. I stayed ten days that first trip, came back to Telluride to work and regroup twice for a few days, then headed out again, first on a one-week and then on a two-week trip, crisscrossing our vast state of Colorado to see doctors and accompany David to medical procedures in Glenwood Springs, Grand Junction and Denver. For over a month, I assumed the role of my brother’s health advocate. The fact that he wasn’t able to talk very well underscored my role; I became his voice both literally and figuratively. I became a velvet pit bull of sorts sweet-talking our way into hard-to-obtain doctor’s appointments, asking question after question about the diagnosis, treatments and cure rates as I gathered information from every imaginable source including the many pamphlets handed out to us at the hospitals, my note taking and recordings of every doctor’s appointment, the internet, friends in and out of the medical profession, total strangers that had been through similar experiences–it all was important in attempting to make sense of my brother David’s Stage 4A diagnosis of laryngeal cancer. 

Dave at the House at the Lake

But first I cried. Not in front of him. But the first five days I was in Aspen with him–fortunately staying in a different locale–I cried hard at least five times a day. I felt so heartbroken. It was devastating to see my older brother in such a state. Riddled with pain from what was first thought to be a rheumatological problem but, in fact, turned out to be a systemic problem brought on by his body being gripped by cancer, my heart winced as I saw my brother hunched over and limping around like a cripple. His shirt and jacket hung rumpled over his shoulders because his pain was so great that he couldn’t raise his arms high enough to put them on properly. An old belt cinched his jeans that were already a good size too big for him and it came as no surprise that he had already lost fifteen pounds because of his inability to eat and sleep due to all the pain.

Seeing my brother so beaten down effected me like nothing else that had happened in my life for a very long time, not even the passing of my father over two years ago. At only 59, I knew that even if David survived this, he’d be haunted by the prospects of a recurrence of cancer the rest of his life. Harsh, but true. I know this because I had cancer when I was in my mid-twenties and I know that that increases the chances of it coming back in one form or another. (Not that I’m looking to manifest it of course!)

But mostly, it all seemed like some sort of a cruel joke. I had witnessed firsthand for more than two years the burden of familial duties that David had to deal with, obligations that began long before the passing of my father but increased exponentially as soon as Dad was no longer in our lives. Even in the best of circumstances, the business of settling one’s affairs can be onerous, all of which must take place beneath the shroud of grief that comes with the loss of a loved one. And David and Dad were as close as can be. 

But the work, stress and emotions have been compounded tenfold by a litigious younger brother set on making our lives miserable. He has put up every imaginable obstacle to the settling of my father’s estate and a good number of other financial matters that need to be sorted out as well. 

He has even sued David and me personally–twice–because we had his belongings professionally moved from the family residence and put in storage when we needed space for remaining possessions from the sale of the family’s summer home. This younger brother had been notified numerous times about the need for decluttering but he chose to ignore our phone calls, emails and messages–even those that came from our mother. 

Dave and Mom

No, my mother’s pleas have had no effect on him and instead he just comes back with more legal actions to wear us down and drain the family coffers despite the fact that he has already received ridiculous amounts of money from the family, gobs above and beyond anything the rest of us have seen. No, he doesn’t care that he has made our 85-year-old mother ill over this. Not only was she not able to peacefully mourn the passing of her husband of almost 62 years, but as she hobbles toward increasingly poor health, she has to deal with these colossal legal doings. Instead of enjoying family peace and harmony, she’s caught up in court appearances, writing affidavits, meetings with lawyers and a whole lot of other very time-consuming and expensive unpleasantries. She’s a fan of Judge Judy, but the famous TV judge has never seen anything quite like this in her courtroom. I guess it’s a good thing that this contentious bro hasn’t had any contact with Mom except via lawyers since May 2016. We’ve done our best to protect our mother but so much of it is out of our control.

That and the mounds of papers that David has had to deal with surely served as the fuse to ignite his cancer. Like the cancer, there’s no sign of this brother letting up. There’s no end in sight; there hasn’t been one bit of relenting. Even after he was informed of David’s cancer diagnosis, he had his lawyer send out subpoenas to our accountants and brokerage firm. Then not long after that, there was another of his twenty-three-page tomes. And then even more wrangling, more actions and more and more and more!

Just heartbreaking. That’s why I cried so much those first days in Aspen. Truly heartbreaking that one person could inflict so much pain. I honestly felt the heartbreak of my father during this time. As much as he tried to protect us, his attempts were futile and I’m sure he’s as heartbroken above as we are here on earth.

And the irony of it all! David and I have spent so much time together these past two plus years, sorting all this out, going to see lawyers together and buoying each other up. Now we are bonding over dealing with the cancer, another type of villain, and instead of seeing lawyers, our time has been consumed with appointments with medical professionals. Boy, can life sometimes feel so hard. The true irony is that David was the one that tried to help this brother the most during his life and now look at how he has turned on him!

And still, we are the winners. Since I showed up on the scene on January 4th, David has been flooded with love. Not only from me–the depths of which I had not known I had for my brother–but also from his mother, his brother, Frank, his wife, Geri, a great number of family and friends and all the wonderful doctors, nurses and other healthcare workers he has encountered at Valley View Hospital in Glenwood Springs, St. Mary’s Hospital in Grand Junction and the University of Colorado Health in Denver. I know that it’s the love and support he is feeling from all of us that is carrying him through, a wellspring of compassion and shining light that will hopefully keep him afloat throughout his radiation, chemotherapy and immunotherapy protocols. In view of the fact that radiation for throat cancer patients burns the hell out of the affected area, this is known to be one of the most grueling cancer treatments one has to endure. (In reading this, however, his doctor said, ” I think of it–the radiation–as elegant but aggressive.”)

“You are going to feel the most love and support of your life, Dave,” I tell him as I barrel west along I-70 from Aspen to see a special radiologist oncologist in Grand Junction. 

He nods and then croaks something about me not eating soup while I’m driving.

It had been a marathon of sorts the whole month of January and into early February traversing the state, driving huge distances within our beautiful Colorado, to meet with doctors to find out the proper diagnosis and to chose the right treatment.

As much as it was shocking at first, his original Stage 2 diagnosis of laryngeal cancer seemed manageable. But then two days after his first cat scan report, he was called in and told that he actually had Stage 4A, that in addition to a tumor on his vocal chords, he had a tumor breaking through his thyroid cartilage. I was back in Telluride during that time and received the call at the house from the nurses right after David had left the hospital and the consultation with the doctor.

I was rushing to take my sixteen-year-old cat, Clara, who is in the early stages of kidney failure, to the vet’s for her weekly infusion, a sort of kitty dialysis. I listened intently and as calmly as I could but then dropped some major F-bombs when I heard that it was Stage 4A and that the recommended cure was a laryngectomy, an operation that would leave my brother without his voice box and as they said at first, likely with a feeding tube the rest of his life. “No, no, no,” I screamed before I broke down into sobs. “This can’t be.”

“He said he wouldn’t go for that operation,” the nurses said.

“We’re going for a second opinion and even a third if that’s what it takes,” I answered.

“Yes, yes, of course.”

I abruptly ended the conversation because I was already late for the vet’s but mostly because I couldn’t take it any more.

As I drove the winding mountain roads, I thought of my brother who truly lived to eat. Most of us Clementes do. In my mind I saw him in the kitchen of the family home, preparing yet another tasty meal for my mother and me the way he had done so many times these past years. We both had become my mother’s personal chefs of sorts, taking turns to serve up delicious meals to the lady that had prepared so many for us during her life. (Read Going Forth with Fabulousness.)

Dave Gardening at Mom’s House

No, no, this can’t be, I said to myself. I wanted to scream; crying was no longer sufficient. And had Clara not been seated in her carrier next to me, I would have screamed, cursed and cried as much as my lungs could handle.

I arrived at the vet’s still in tears. Dr. Smolen and his staff were so comforting. Here I experienced the first of many, many hugs that would be offered to me within the weeks to come. 

My family at Telluride Ski & Snowboard School was fantastic. I had taken more days off to be with my brother than I ever had in the fourteen years I’d been an instructor. I’d arrived way late to lineup–also a first–and had been given a class because I had informed my supervisors that “I just needed to teach. I needed to get out of my head.” I’d cried many times in the locker room and been restored by sympathetic fellow instructors. 

People have given me books and iodine supplements for healing the thyroid, they’ve told me about special support groups and cancer-centric organizations, they’ve sent me prayers, words of inspiration and cancer-related articles, they’ve recommended creams, potions and CBD edibles for dealing with the effects of radiation and chemo. 

And when lodging in a hotel room wasn’t the best option, several even opened their homes to me and let me sleep on their couch, in their spare bedroom or on a foldout mattress on the floor in Aspen, Redstone and Denver. Hearts were opened wide to David and me during our month-long quest of sorting this all out. So many have been so kind. 

I have resourced myself on people’s support and passed it on to David at every turn. “Steve’s church is praying for you,” I tell him as I watch him break into a smile. He seems to be soaking it all up and all I want to do is give him more, give him more love and more hope.

By mid-January we had already become intimately acquainted with the effects of radiation on the body from everything the medical professionals and others told us along with everything we read. Everything passes through the throat–air, food and water–so the consequences and side effects are enormous. “People typically lose at least twenty pounds during the seven-week treatment,” says one doc. “And by the third week of treatment, the pain in your throat becomes so great that you have to be on heavy duty pain meds. “Dehydration and malnutrition are big concerns by then and it all becomes even worse during the first few weeks after the treatment ends.”

On our way back from one of our trips, I pull off in Basalt and look up Tom Petty’s “I Won’t Back Down” and David and I sit there in the parking lot and listen to it about three times and then twice more as we continue on to Aspen. We have tears in our eyes and I tell him, “I will always be there for you.”

This comes on the heals of having seen yet another doctor that recommended a laryngectomy. I did my best to give him a pep talk about how life would still be worth living even if he did have to have such an operation. Fuck, I can’t believe we’re even having this conversation.

View from One of My I-70 Jaunts

In my two trips back to Aspen from Telluride, I had brought him a haul of home cooked foods that I had lovingly prepared for him. Much of our conversation often centered around what we were having for dinner. (David is, in fact, a superior cook.) Suddenly, I realized it might be best not to mention food. “There are other joys in life,” I tell him. “Dave, it’s about you choosing to live.”

“Focus on visualizing yourself healthy and well,” I tell him, talk that I shared with my oldest brother, Frank.

“David seems to be responding well to that,” I told Frank in one of our many conversations about our brother.”

“Ahhhh, that wouldn’t work for me,” Frank dismisses.

“And Dave, don’t even imagine yourself in a casket,” I add. “I had one vision of me looking down at you in a funeral home the other day and I chased it right out of my head.” Dave nods, which makes me happy that he’s “buying” my approach, a New Age spirituality that Frank seemed to see as bunk.

This has been the only way for me. The thought of possibly losing my brother is unbearable. And as I ponder this (sometimes I can’t help it), I realize that losing him would also be like losing so much of the memory of my father and my grandfather (my mother’s father). He is so much like both of them in his actions, demeanor and mannerisms and I know that that’s part of the reason I love David so much. Plus, who would deal with all this legal crap and other important family matters? Moi, so it seems.

A Great Place of Healing

Fast forward to a blowout visit to UCHealth Denver. I had worked a week on obtaining appointments with the best doctors at the Anschutz Cancer Center. So much of our hope hinged on Dr. David Raben, one of the best radiologist oncologists in the country. He impressed us very much and for the first time since all this started, gave us real hope when he started talking about organ sparing. He had consulted with his colleagues from top cancer-fighting centers around the country and told us that they all felt that David could be cured with his pinpointed radiation protocol and chemotherapy treatment. “You will be monitored every step of the way. But if we don’t see the cancer going away, you will have to have a salvage laryngectomy.”

We were taken by Dr. Raben for many reasons including his emphasis on diet. “Eat primarily plant-based, a Mediterranean diet,” something we knew would be easy for this Italian guy who relished his daily doses of greens, beans and olive oil. “And no sugar. Absolutely no sugar. Cancer feeds off of sugar,” Dr. Raben stressed. “Be sure to take probiotics as well.”

Now, that’s my kind of guy. I know that sugar has been my demon for way too long. I don’t have tons of it but it’s too much for me. As a result of all the stress I’ve experienced these past couple of years (I’ve lost twenty pounds in fact), my candida has blossomed; sugar in all its forms makes the problem even worse. (I actually had Stage 1 bladder cancer–there’s part of David’s genetic predisposition–when I was a young, beautiful thing in Paris at the age of twenty-four, so I know this is something I need to keep in check. I know also that it reflects an imbalance in my life, that it was part of the reason I was never able to have children, that although I am set on staying healthy, the notion of a recurrence of cancer is very real for me, particularly since that part of my body has often felt unwell all these years. I also had a different sort of cancer scare, which I wrote about in Glamping Through Breast Cancer Fears.)

We spent the rest of the day at UCHealth Denver visiting doctors, social workers and financial advisors. It was overwhelming. As we passed through the halls, common areas and cafeteria, it felt like we were on the streets of New York but here every other person sported some kind of a bandage, sling, walker, wheelchair or cane.

We are all walking wounded, I thought. Some of our wounds have manifested themselves, others lie in wait. So many souls out of balance.

And here they were in one of the country’s top centers of healing; UCHealth Denver ranks #1 in Colorado and #15 within the United States. Every single person that worked here–like at all the other institutions of health we had visited the past month–treated us with great tenderness and care. “I can’t believe how kind everyone is,” I said to Dave. He shook his head in agreement. It all still seemed so unreal though.

Here was David circulating within a fog of pain and disbelief in search of his cure. David, who notoriously couldn’t visit people in the hospital because it made him queasy and ill at ease. He had never spent a night in a hospital, never had an operation or a broken bone. He had been a healthy guy his whole life. “I guess I’m getting it all at once,” he said to the health professionals, many of whom uttered the same words to him simultaneously.

By the end of the day, I knew what team I wanted to join, however, I didn’t want to influence my brother’s decision in any way. “So what do you think?” I finally asked him over chips, salsa and a much-needed margarita as we awaited our Mexican takeout food that night.

Dr. Raben and Dave

“I’d like to go with Dr. Raben,” David says.

“And do you think you want to be a part of the study?” I asked referring to the possibility of him being a part of a so-called Javelin study, put on by Pfizer, that could potentially increase his chances of healing. Or not, since there would be a 50% chance he’d receive a placebo instead of the immunotherapy drug they were testing.

“Yeah, I think so.”

We talked a little bit more about how all that would look: his need for living in Denver for a few months and traveling back there on a regular basis throughout a whole year for continuation of the drug study. It was important to imagine how it could all come together, particularly since he had everything pretty well set at Valley View in Glenwood Springs. What a comforting place, very much like a warm Colorado lodge replete with a great medical staff, facility and integrative medicine. We learned, however, that the success rate increases about 20% when you have treatment in a major hospital, a teaching facility that carries out these highly-specialized protocols in volume. How can you turn your back on that?

As David prepared himself for bed in our hotel suite, I sat there and pondered the situation. It was as though I was looking at myself on the couch from above. It looked and felt like I was sitting there with my wheels turning, just like how I saw my father do so many times in his life. Yes, I was channeling my father, very much like I had these past weeks but now even more so. “Well, if you want to do it here in Denver, I better get cracking,” I said. We were to head back to Glenwood the next day and I wanted to get everything in motion. Let me email the doctors.

“Ok, you work on it and show me in the morning,” David croaked, his voice diminishing daily.

I sent emails, I phoned, I texted. We stayed in Denver the whole week. With the help of the medical professionals, I lined up his treatment in the mile-high city in what others said was a record-breaking turnaround. I even arranged for him to see a dentist because I had remembered hearing that it’s important to have any potentially necessary dental work done before entering into cancer treatment.

Frank, Mom and Dave During Happy Times

I conference-called my mother and my brother, Frank, one of many calls we had shared, incredibly important moments of connectedness since Mom didn’t feel up to traveling from upstate New York to Denver to see David. But this would be the most important. “There’s hope,” Mom, I said, after not having been in touch with her for a record-breaking few days (we were so busy!). “We’ve found a good treatment for David here in Denver and if all goes well, he won’t have to have a laryngectomy.”

“Oh, thank God,” my mother said as she broke down into tears.

So much love. We talked about the treatment and how David was going to be living in Denver for a while with Geri. Frank talked about the week he wanted to come to help, a few weeks after my next planned trip to Denver. “Tell him I love him,” Mom said.

“I will,” I said.

“I feel so helpless,” Mom said. “I wish I could be there for him.”

“You are, Mom. When I show up for David, I show up not only as me but as you and Dad. I’m sure he sees qualities in me that remind him of you and our father. It’s your way of being here for him. I’ve even been wearing Sister Rose Madelaine’s special Silver Jubilee cross and Grandma’s silver bangles to every appointment. You’re all here with us.”

David and Geri

And this is how I knew it would remain throughout those upcoming challenging months. There had already been so many bumps in the road. David’s treatment was delayed a week because something burst in his neck, which required a hospital stay and IV antibiotics. Fortunately Geri had arrived in Colorado to deal with that and all that ensued. (Up until that time, she had been overseeing a renovation project on their home back east and then put that on hold when all of this blew up.)

Unfortunately with the odd neck development came the threat of a tracheotomy. And once again, the threat of an eventual laryngectomy loomed. David finally healed from that, had his (hopefully temporary) feeding tube surgically implanted and began Dr. Raben’s treatment, the chemotherapy and the immunotherapy study with fingers crossed.

I know our hearts will surely be broken a hundred times more during these upcoming months but may we all be open to the very strange gift that comes with such a diagnosis.

Love, love, love. I think this is the silver lining to cancer, other terrible diseases and major medical happenings that hit us in our lives. Sadly, you have to go through a roller coaster of emotional and physical events along the way.

But let us never give up hope. And know that chances are you’re a lot stronger than you ever imagined. That’s what I discovered in myself and I hope this will be the case for you if ever you are called upon to put your resiliency to the test.

As far as David is concerned, I am tremendously inspired by his bravery and positivity. Surely, my father is helping him along the way.

God bless all of us wounded souls and may we find strength in response to all that is thrown our way.

Update as of Early July 2018

I wrote the above piece back in February. I had to have a way of processing all of this. I had shared it with David early March and he acknowledged “Yeah, that’s what happened even though so much of that seems like a blur.”

David did amazingly well throughout all of this. Sure, he suffered many of the horrible side effects that had been predicted but he stayed positive, woke up super early every morning to pump his Kate Farms formula through his feeding tube, one of many less-than-joyful experiences that he had to do.

Yum: A One-Month Supply of Kate Farms

Indeed, cancer had become his life. But mostly, he focused on becoming well. His wife, Geri, set up a nice healing space in Denver in an apartment they were lucky to find. She cared for him throughout his long treatment phase and beyond. Only people that have been up close and personal to cancer know how much is involved–emotionally, physically, mentally and spiritually.

Dave Undergoing One of Twenty-Nine Radiation Treatments

Within the intense six-week period of David’s treatment, he had about ninety different medical appointments, a typical number for most cancer patients. Geri escorted him to the majority of them, driving him there, since David was too weak to do it on his own and also because he lacked the mobility in his arms to use a steering wheel. She ushered him through miles of hospital corridors–past the parade of walking wounded–or rather fearsome warriors determined to conquer their diseases–to arrive to the many required destinations on time. I did it for a week and found it all to be exhausting. It’s tiresome for the patients and caregivers. No, fighting cancer is not just about serving someone soup in bed. It’s all that and much more.

Geri went back east to upstate New York in May to resume the work on their house and the plan was for David to stay in Denver, continue his biweekly immunotherapy treatments and hopefully head back there from time to time.

But things are not shaking out exactly as we had hoped, as I had expected. I felt quite sure that the treatments would work and I continued to visualize my brother healthy and whole. I imagined the tumor shrinking into a big, fat nothing by the end of his treatments. But by mid-June–just about two weeks before David was to have his scans, the ultimate tests for cancer-fighting people, I started to feel pretty edgy. Still, I tried not to let any negativity creep in and tried to keep seeing my brother 100% cured.

I joined him in Denver and was prepared to accompany him throughout it all. After almost three weeks of testing, waiting, wondering and worrying, most of the doctors are still pretty convinced that the cancer is still there. Although it hasn’t spread and it has been greatly reduced, it’s not clear that the bomb in his body has been fully disarmed. And sadly with cancer–or at least this type of cancer–almost doesn’t count. This is not horseshoes or darts. You have to hit and eliminate the target completely to become cancer free. Another round of radiation is not an option; chemo would be purely palliative.

So sadly my dear brother is faced with the prospect of a laryngectomy, a brutal operation that not only takes out your voice box, leaving the patient–let’s face it–with some kind of a weird-sounding apparatus to express himself. But it also carries some tremendous risks, including the possibility of having to have a feeding tube for life or having saliva overflow into his longs, which could lead to life-threatening pneumonia. (Yes, I know, none of this is easy to hear but that’s only a fraction of it.)

We never thought we could wrap our heads around this one, an operation that David–and maybe even me a couple of times–referred to as “the hatchet.” Yet as Dr. Goddard, the ENT surgeon at UCHealth carefully explained David’s options to us, we both realized that that was his only choice if he wanted to live more than a few years and be spared a horrible death brought on by the cancer eventually taking over his body. David sat stoically in the examination chair, swallowed hard and nodded his head in acknowledgement of what he had to do.

I felt grateful that he was not opposing the idea, I felt grateful that he was choosing to live.

I couldn’t help, however, breaking out into sobs by the time the doctor scooted out of the office. (As calm and professional as she was, I think she might have been choking back tears as well.)

David and I stopped on the way home for a beer and some apps. To say that we needed to decompress is an understatement. Ironically we both desperately wanted a smoke, me a cigarette (an old habit leftover from my days in France but fortunately I’m one of those rare persons that can have just one on occasion) and David a stogie. (He was a summertime cigar smoker in recent years, which was likely also a contributing factor to the cancer developing inside of him.)

I took a deep breath and asked him about his fears about the surgery and other concerns regarding the dreaded laryngectomy. We had a decent exchange, all things considered, particularly since the food was pretty awful.

We were back at the apartment by 5pm on a Friday afternoon, at the time of day when the heat felt the most intense as it penetrated through the blinds of his Denver digs. I briefly thought about people setting sail–on the water or in some figurative sense–for a fun summer weekend. I took a deep breath and called my oldest brother, Frank, my other rock, my steady ship in these turbulent seas.

Clearly heartbroken but strong he said, “I’ll call Mom tomorrow and tell her the news.”

“Thank you. I don’t want her to hear me so upset.”

And then at the end of the conversation he informed me that our younger brother had put forth yet another legal action and that there was a court date set for mid-August, just another one to add to one scheduled for the storage unit lawsuit case in early September.

“Nice,” I said. “I’m not going to let that upset me now.”

But as unchristian as it might be, I found myself thinking, I wish he was the one having his gullet cut out. Why does the good brother have to endure this? I wish this was happening to the bad one.

Fortunately I don’t dwell on such thoughts. Aside from those occasional reflections–or should I say questions to God–I don’t waste any energy sending him ill will. He cannot be a happy person and he is certainly void of the love that all of us have been experiencing.

I was comforted by a few dear friends and loved ones that night on the phone. In between, I cried me a river and wondered how I could find the strength to help David through such a big surgery and long recovery.

But my connection with others comforts me. Cancer is not a journey to travel on your own, even for caregivers. Everyone needs lots of support. And many, many hugs.

Dave and I woke up the next morning in a stupor. It felt like someone had died. It felt like a defeat. But slowly we began to emerge and ended up having a good day. We didn’t talk about his health issues once that sunny Saturday. And as I went about my day, I heard my father say many times, Pick yourself up by the bootstraps, Hun.

Oh, there you are, Dad. Thank you for showing up for Dave and me. I’ve been wondering where you’ve been but thanks for helping us now. I never thought we could accept this news. Yes, we’re picking ourselves up by our bootstraps.mom and dave

Mom and Dave

“I’m going to go for a walk this morning and call Mom,” I said to Dave by Sunday morning. “Do you think you’ll call her later?”

“No, you can cover it,” he said.

“OK.”

I did a few more things around the apartment and then told him I was heading out.

“Tell her I’m OK,” David said in his hoarse voice, which was more like a whisper.

“I will.” And as I walked out, I felt like I had never in my life been so proud of my brother and so in awe of his courage.

Scallops: One of Many Delicious Meals I Shared with Dave Early July

Update as of Late July

David had his biopsy the Wednesday after that weekend packed with so many emotions. Dr. Goddard explained to me that it looked better than she expected but she still thought he had cancer. “Biopsies can be inconclusive,” she explained. “Sometimes the cancer is hiding deep within the tissue.”

A flash of the bright spot–lit up like a Christmas tree–on David’s pet scan flashed in my head. “But it still might be inflammation, right?” I asked. It sounded more like a plea than a question.

Her response didn’t offer any encouragement, so instead we discussed what a laryngectomy would entail.

Dave’s Ominous Wristband

I went to see my brother in the recovery room and he was looking pretty good in view of what he had just gone through. “Can you believe they put this thing on my wrist?” he said as he showed me a fluorescent pink wristband marked restricted extremity. “That’s so they don’t use that arm for any IVs. She already has that arm earmarked for a skin graft for the laryngectomy.”

“Oh, Dave,” I said as I felt my eyes welling up.

We went back to our place and I debriefed my brother on what the doctor told me. No sense sugarcoating it, I thought. “But there’s always a chance that it is inflammation and that the doctors are wrong,” I added meekly.

He was too wired to take a nap despite the fact that we both had been up since 4am. I’m sure his head was churned up by it all. Plus, he had to debrief Geri on the phone. And I knew that would take a long time; it was hard to imagine such a conversation with your spouse, especially over the phone.

I slept for about four hours and still woke up exhausted. The prospects of the laryngectomy and all that it would entail overwhelmed me. It was hard to imagine my brother being hurt like that–even with all the opioids in the world.

I rallied and shared another nice dinner with him. His throat wasn’t hurting as much as we’d expected. The doctors do work wonders. But still, a lot of it is guesswork for them, something that we lose sight of as we often hang onto every word they say. I remembered the theme of a book, Snowball in a Blizzard, that a good friend told me about at the beginning of this process. I decided I needed to look at the YouTube interview again. No, the doctors don’t always know. There’s a lot of grey matter in medicine and we need to keep that in mind.

After David went to bed, I began my juicing. Celery juice had become my new elixir of choice. I had touted its many wonderful health benefits to David over the past weeks. “It’s even supposed to be a cancer fighter of sorts,” I emphasized. He took to it like a baby to breastmilk and from the beginning of my visit to Denver, the super duper juicer that I had had shipped there before my arrival was put to good use.

I tackled my six bunches of celery, cutting, washing and soaking them in apple cider vinegar to eliminate pesticides. (Although I usually buy organic, I opt for a cheaper solution here.) It’s an onerous process but I try to do it mindfully, stating affirmations such as I’m healing myself along the way, I’m healing David.

I pulled up Tom Petty’s “I Won’t Back Down” on my laptop and listened to it over and over. I figured that David wouldn’t hear it over the din of the fans and the air conditioner. I was really getting my groove on by the time I’d cut up most of the six bunches into thirds, trimming the tops and bottoms, rinsing any visible dirt and bugs before putting it to soak. I want a cocktail and a smoke, I thought as I tried to mentally and emotionally process the thoughts swirling in my head. Instead, I guzzled a tall glass of celery juice–sixteen ounces worth, the equivalent of a whole bunch of celery. After about ten plays of “I Won’t Back Down” and possibly the rapid release of endorphins brought on by the celery juice, I was feeling better. I moved into other great Tom Petty songs, I fixed myself a raspberry margarita and continued to repetitively–no meditatively–stuff the celery stalks into the juicer. I watched as the bright green liquid emerged into the clear plastic container. Transformation, I thought. Through pain comes transformation. We will get through this.

Juicing: A Big Production

David didn’t sleep much that night but was not disturbed by my doings. He was happy to hear that I had made such a supply of juice. We talked with Dr. Raben the next day, which elevated our mood. He explained that although the final biopsy results weren’t in, there wasn’t any concrete evidence of cancer from the slides of the specimens taken during the operation. “You mean you’re giving us a glimmer of hope, doctor?” I asked over the phone.

“Well, no, I don’t want to give you false hope,” he replied. Still, David and I felt more optimistic after talking with him, forever reminding ourselves that of course our super hero radiologist oncologist would tend to be more optimistic about seeing that his protocol had worked. And Dr. Goddard, the surgeon, would not. Cutters want to cut, especially if that’s the recommended cure for Stage 4A laryngeal cancer.

I woke up at 5am the next morning to take the Greyhound back to Telluride. I checked my emails and saw that Dr. Raben had sent me one at 4:30am saying that all biopsies were negative and that David could continue with the study.

I quickly announced the news to my brother and I could tell he was feeling like me, that it was better to feel hope than despair. We were running with this; David just bought himself time for a miracle. The pet and cat scans would be repeated at a later date. Maybe the doctors’ concern was all due to inflammation or if it is still cancer, maybe more hits of the immunotherapy will make it go away for good. Whatever it is, it’s so much better to be positive than to dwell on the super scary parts.

I have been working Louise Hay’s philosophies doubly hard. People have been cured of cancer by positive thinking. I shared her Power Thoughts with David and am hoping he’s finding them helpful as well. Either way, we have to put out the best to the universe in order to achieve the absolute best back. I often think of the image of someone flexing their butt when getting a shot; if you do that, it’s going to hurt like hell, so it’s better to relax and ease into the pain and imagine that all is well.

I hope my brother is doing this now. I know he’s focused on getting stronger both physically and mentally; the doctor emphasized how important that is (in case he does have to have such a big operation), especially since the body is so depleted after radiation and chemo. I’m trying to put my energy there as well in case he needs me. David has asked our mother “to hang tough” and I’m hoping to help her to do that when I spend time with her back east this August. Yes, we all need to be buoyed up. We are one; life is not meant to be experienced alone.

And who knows? Maybe I can even turn her on to celery juice.

Maybe this will inspire you on your journey, too. I hope so.

Latest News as of Late August

Sister Rose Madelaine’s Cross

I’m now back with my mom in the family home and we’re trying to be strong and positive. She informed me that if David has to have the operation, she wants to be there. That was quite the declaration, since she has not felt up to traveling these past couple of years.

So I arranged for Mom to have additional testing at her pulmonologist’s and she passed brilliantly: She can comfortably reside at an elevation of about 7,000 feet (which is considerably higher than that of Denver) without more than her usual supplemental oxygen that she only uses periodically. She’s also good to fly and we’re working on outfitting her with a compact and concentrated oxygen-producing device that can be toted aboard the plane. (Interestingly enough, I also learned during this process that oxygen levels within pressurized cabins in planes is the equivalent of what you experience at about 7,000 feet, almost the elevation of many of our mountain towns in Colorado.)

Meanwhile, David announced to us that his scans have been set for mid October. “I’ll take that as a good sign,” I said to my brother. “I’m sure if they were exceedingly worried that the cancer was brewing inside of you, they’d want to do the testing sooner.”

He didn’t say much in response except to add, “Well, that gives me about eight more immunotherapy treatments and hopefully that will make a difference.” There’s another hope piece, I thought.

In the midst of David trying his darnedest to focus on a steady regime of good eating, regular exercise and finding serenity in the most unlikely places, we were all slammed with a firestorm of assaults surrounding the mid August court case. Another brother (not worth naming either) joined the cause to discredit David–and me for that matter–in an attempt to remove David from overseeing accounts that my father entrusted him to manage. Talk about defying my father’s wishes! That didn’t work but they did convince the Court to require David to do an almost twenty-year accounting of a certain account. (The Court often has to give some kind of a gimme to the other side.) Dad was a super secretive man, especially when it came to money matters. (Although he did always tell me that the plume is mightier than the sword, so I know he is guiding me here.) So this is just the sort of thing he would not have wanted to happen, would not have wanted David to have to do, especially while battling cancer!!! It didn’t happen during my father’s lifetime but suddenly it has to happen now!

David–like my father–is a man of great integrity and it’s absurd that he be questioned in such a manner. Talk about taking advantage of unfortunate circumstances. And they are brothers? There’s no doubt that David was the one that helped both of these dudes the most during their lives. That’s pretty crappy payback. I guess we’ll just have to let karma take over.

I had been a good sister to them as well but that came to a screeching halt when I told the head antagonist decades ago that I didn’t want to do a mail order catalogue with him based on my experience, contacts and knowledge of French goods. The other brother became annoyed with me largely for having asked him too many times to help out at the house. He didn’t pitch in once and instead he and his partner lashed out at me for “guilt tripping” him.

To make matters worse, this said partner called my mother and harassed her for an hour and a half on the phone. Her apparent motive was to pit my mother against Frank, David and me–how ironic since we’re the ones that have helped her and the family since my father passed whereas the others have caused so much trouble and heartache. Apparently this self-appointed spokesperson for my brother became so frustrated with her mission that she crossed the ultimate boundary and made threats about what my mother should do with her Will. Mon dieu! Incroyable!

This has all become stranger than fiction. Two summers ago at the beginning of this craziness, Mom and I devoured Augusten Burroughs. Then at one point Mom commented, “His wacky family stories pale in comparison to ours.”

I think there’s some truth in that, especially when I learned that the parting words that this brother’s partner said to my mom was “I’ll see you in court!” Oh boy, oh boy, oh boy.

So at a time in David’s life when all should be hearts and flowers, rainbows and unicorns and maybe some daily doses of George Carlin comedy, he has to once again plunge himself into colossal mountains of paperwork in order to satisfy these peoples’ demands by the end of October. I told him I will be at his side digging through files in his storage units in New York and Colorado, an arduous task that will surely test our mettle many times over. (Wouldn’t it be easy if financial institutions could readily supply such documentation but in David’s experience with my father’s estate, that’s rarely the case.)

The accountants will be busy, too, with a job that will end up costing tens of thousands of dollars.

No, David has not been granted the reprieve that he requested neither from the cancer nor from these litigious brothers and their cohorts. My mother, of course, is disgusted and greatly disturbed by it all. For them to think they might be currying favor with her is a farce.

Instead, Mom, Frank, David, Geri and one of David’s childhood friends will be coming together this weekend to celebrate David’s 60th birthday. It was on Thursday–DOB: 8/30/58. That’s a line that I said and heard countless times over since January. For David and Geri, it has surely been hundreds of times. Sadly, by the time all this comes to an end, David’s DOB will have been iterated well over a thousand times.

Yet we are the winners here. We have love that will provide us with an endless source of resilience and hope. These other outliers haven’t done a thing to help the family in years; they haven’t even sent David a card. Let them get together for a hot dog.

Wow, life can be pretty damned stormy at times. But as the waters churn up even more fiercely, it is my intention that my thoughts and actions become increasingly purposeful and calm.

With the help of love, resilience and hope, I won’t back down. And thankfully, David is in for the good fight as well.

I ask you to join me in visualizing David healthy and well mentally, physically, emotionally and spiritually during this crucial time. May we all be able to find the love, resilience and hope that we need to face the many curve balls that life throws our way. Please throw some positive thoughts to all of us if so inclined.

If you’d like to send my brother a message of support and/or be kept abreast with more of his doings, please visit his Caring Bridge site.

Rituals

My Mini Travel Teapot

I like to develop certain rituals, like lighting a little candle in my hotel room in the evening, when I’m on the road. I found I needed even more grounding with all the bouncing around to the many doctors’ appointments under such stressful circumstances. I stayed many times at The Caravan, a clean and comfortable family-run hotel in Glenwood Springs, each time requesting the same room. The familiarity of it all, plus the warmth of the people behind the front desk who knew what we were going through, made my stay so much more enjoyable. I also brought my own special “Let that Shit Go” mug, a couple of plates and utensils, an electric travel tea kettle, my own selection of teas and a small cooler filled with healthy foods.

In Aspen, I always went back to the same room at the Inn at Aspen, which like The Caravan, had the convenience of a microwave and a fridge. There, too, I was truly able to dial into the presence of my father, since I stayed in our family-owned unit that he had enjoyed as well.

My sweet friend, Phoenix, shared a cornucopia of delicious foods and spiritual pearls with me when I stayed a couple of nights with her in Old Snowmass. When I left, she gave me a beautiful salmon-colored rose that had been placed in a plastic tube so that it would remain ever fresh. I carried that totem with me–carefully transporting it in and out of the car (in the dead of winter) to our various places of lodging–for two weeks. Now on a shelf in plain view at home dried yet still rich in a deep rosy-peach color, it serves as a constant reminder of the cancer journey that has forever changed our lives.

As I mentioned above, I wore Sister Rose Madelaine’s special Silver Jubilee cross and Grandma’s silver bangles to every appointment. Sister Rose was my maternal grandmother’s sister and a nun at St. Joseph’s Provincial House in Latham, New York. Mom has been praying a lot to St. Joseph. Although I’m not a practicing Catholic, I am a spiritual person and I derive great comfort from religious and secular symbols alike. I recommend you bring something like this or a lucky charm of sorts along with you on your journey.

Feeling Lighter

Do Something to Change Things Up
Step out of a room and take a walk, change a habit that no longer serves you, sport a color that you never wear–do whatever it takes to change your surroundings or external life, even if it’s just for a half hour. That really helps to change your outlook. Life felt so hot and heavy for us in Denver early July that I decided to have my hair cut short at Matthew Morris, one of my favorite hair salons. It elevated my spirits in so many different ways. Next time I might have to become a redhead!

Those are just a handful of my special traditions. I hope you create your own on your travels, whether it’s for a medical issue or not.

Resources

Imerman Angels
A dear friend of mine and three-time cancer survivor told me about this organization that matches cancer patients and/or cancer caregivers with people that have similar experiences. We could, for example, be in touch with someone that was diagnosed with the same exact cancer as David and also someone that has followed the same treatment program. And I could be in touch with his or her caregiver. What a wonderful way to glean more knowledge and to receive support!

The Cancer Forums
This site, similar to Imerman Angels, is also an excellent resource for cancer patients and their caregivers. I learned that a friend’s husband, Richard Marine, is the administrator behind it, a courageous man that has battled cancer many times and is still in the fight for his life. It’s always so inspiring to see people use their experience to help others. Thankfully there are many good people out there.

My Mantra

Kaiulani Facciani’s What I Did and Do and Why

From reading stories about Michael Douglass (who battled and survived throat cancer) to a friend of a friend that also valiantly emerged from the grueling treatment of throat cancer and learning about the tales of many more, we have been encouraged by so many success stories. One of the best is from Kai, a friend and Telluride local. She is such an inspiration! She was told by the doctors at least twice that she didn’t have long to live and here she is living well many, many years later. She has succeeded in finding the right balance between western and holistic medicine in order to keep her cancer in check. Take a look at Kai’s website to see how she has been able to do so well.

The Pantry Pharmacy

I’ve been fairly health conscious for quite some time, however, I’ve become increasingly more so these past couple of years due to my own health issues. Last fall I discovered the Pantry Pharmacy and its corresponding Live Strong Facebook support group. The wisdom and remedies–many of which have been provided by Rebekah W., the healer behind The Pantry Pharmacy–have already helped to treat many of my ills. It’s especially geared toward women with female issues, although some of the remedies, such as taking charcoal as a detoxifier, produce excellent results for men and even pets! Know that although this site does not directly deal with cancer, it does address inflammation a fair amount, which often seems to be a precursor to cancer and other diseases.

Dennis Surrounded by His Wife, Dave and Me

So Much Heart

I reached out to a fellow ski instructor, Dennis Huis, the first week David and I were in Denver. I knew that he was in Denver awaiting a heart transplant and that he was also affiliated with UCHealth Denver. After two nights in a shabby and dismal hotel, he insisted we come and stay with him in the condo he was renting, one specially designated for organ donor recipients. It was wonderful to feel so much love and support and to feast on his lentil soup. We paid Dennis a visit about a month later, just a couple of weeks after he had received his new heart, and I wrote about it in So Much Heart. Dennis seems to be doing well but it’s a long and costly recovery. Read my story to find out more and to make a donation.

Good Luck Dave

Mom’s Prayer to St. Joseph

Mom’s Prayer to St. Joseph