Cancer

Cancer... 

Now there's a word that'll cause a wide array of responses. 

How does it make you feel?

We all know someone who had Cancer. Some survived, some didn't.

Other words like carcinoma, melanoma, malignant and benign are associated. How about this one, Invasive Squamous Cell Carcinoma? That's my flavor. It's enough to make your head spin. 

Then there's the treatments like chemotherapy and radiation. Testing via CT scan, PET scan, blood work and biopsy. Sores in the throat making swallowing and talking impossible, and  requiring a feeding tube.

I detected a lump in my neck in May of 2024. Since then I've seen a regular GP Dr., an ENT, another ENT, as well as a medical and radiation Oncologists. Not to mention the many techs and nurses who run the tests. I've been sedated and had a biopsy in my throat. I've had a torture device mask made for radiation treatments that snaps down over your face and head to the bed holding you absolutely still. It's rather claustrophobic to say the least...

The above was written while I was in the throws of treatment. I'm now two years out from the completion of treatment and ready to spill the beans on what I experienced and felt along the way.

In the beginning, I noticed a lump on the left side of my neck. It was a little knot that stuck out. I let it go for a week or so then I had a routine checkup at the VA and pointed it out to my Dr. She put in a consult for a CT scan. They called me the next day and scheduled it for two weeks out.

I went to the ER the next day and they immediately got me in for a CT scan. My wife Anita and I sat in an ER bay for about three hours waiting on results. The Dr. finally came in and shared that it appeared to be Cancer. He went on to explain the suspected type but my mind heard nothing more after the word cancer came out. I was in some kind of purgatory just hovering in the room with no clear thoughts, sitting on my hands with the thousand yard stare into a blurry mist... The word cancer swirled endlessly in the air...

The Dr. handed me a copy of the report and we walked out. I didn't know what was next. I was silent for most of driving home still reeling internally from that word cancer. I'd lost my dad to pancreatic cancer and his brothers and father also died early from cancer and it had started to hit my oldest male cousins, eventually taking my eldest brother. I figured it was my turn to bear the genetic curse.

I found out I was being referred to Community Care, which is medical care outside of the VA. I wasn't contacted for a few days so I started calling the Community Care department and stressing that there was a need for urgency. I finally got scheduled for an ENT and he in turn referred me to the Oncologist. The ENT scoped my throat through my nose with a camera on the end of a wire. The image appeared on  screen. My wife saw it, a hideous bumpy mass surrounded by healthy pinkish flesh. She said nothing. The ENT scheduled me for a biopsy. The results came back that it was Squamous Cell Carcinoma and with a blood test determined it had been caused by HPV. We learned this can lurk in your system much like shingles can suddenly rear it's ugly head. It was in stage one. An early detection meant more than I understood at the time.

We went to SCOA, South Carolina Oncology Associates, a one hour drive from home. The Oncologist ordered a PET scan and blood work. He explained that the treatment would involve chemotherapy and radiation. I thought it was odd that he exclaimed more than once, "you're young, strong and you've got great kidneys!" He also strongly recommended a feeding tube but it was my option. I was in my early sixties, didn't feel young and had no idea what my kidneys had to do with anything. I had been battling fatigue for the year prior. It frustrated my wife that my life was sedentary. I was not the energizer bunny she'd married but she now understood the cause. Anita made it clear that she'd be there at every appointment.

Again I urged the VA to move quickly on the feeding tube installation so I could get started on the cancer treatments. Everything seemed to take a week or two to get some action. I had to stay on the VA and keep urging them to take action. It was odd to have this tube with an attachable funnel coming out of my upper stomach area. I did my best to tape it down and hide it beneath my shirt.

The first thing SCOA performed was making a molded mesh mask that covered my head neck, chest and shoulders. It was very tight and quite claustrophobic. While laying there snapped down, unable to move, I learned to close my eyes, shallow my breathing and imagine I was playing golf on courses from may past. Making it to the end of a treatment and being unsnapped from the mask was truly the epitome of relief. 

I was scheduled for thirty five radiation treatments which would pinpoint the cancerous mass and three triple dose chemotherapy treatments given once every three weeks to kill any radical cells trying to metastasize elsewhere in my body. Everybody I met and talked to that was undergoing chemo as well, had a single dose administered once a week. The nurse even commented she'd never seen a dose this big when hooking me up.

Initially it all seemed so easy. All the staff were incredibly kind and the nurses were good at finding a vein, I didn't get a port put in my chest as many do, my veins were very inviting and I didn't mind getting stabbed each time. You could relax in a reclining chair and have your water bottle and a snack on a table next to you, while playing with your phone and talking with your mate for about an hour or so. No major ill effects, still able to swallow and eat. But gradually the effects worsened and I realized I was in a battle.

I lost the ability to eat and started utilizing the feeding tube pouring chocolate Ensure drinks down the tube followed by a warm water rinse. No fun but easy enough. The nausea hit me and I couldn't even keep the Ensure or water down. Constantly feeling sick was the norm. The weight was shedding. I looked gaunt and my color was pale. 

The toughest thing was having to go get more of what you knew was making you feel the worst you'd ever felt in your life. I grew sick and tired of being sick and tired. I wanted to die. I couldn't sleep much and rather than keep Anita up, I moved to the reclining couch. The one thing that brought relief, oxycodone, made me constipated. Just another discomfort. Two hours of sleep at a time, always a nearby bucket to puke in. Store-bought enemas and suppositories became a daily ritual. Such fun!

At some point I was given something like tramadol for the pain and it wasn't helping me sleep so I took another one and got one hour of sleep then took another one. I fell on the floor three times trying to get to the bathroom and back to the couch on Christmas eve. I wound up just laying there and trying to call out to Anita for help. I didn't have the strength to make enough noise so I just stayed there on the floor feeling defeated and sorry for myself. Eventually I was able to crawl back to the couch. It was the worst night of the whole process.

Anita drove me to and from nearly every appointment, only missing two due to medical obligations of her own. We had to be at SCOA by 8AM most days and made it home after noon on Chemo days and by10:30AM on radiation days, which were five days a week.

The treatments broke my body and mind down so bad that not wanting to endure anymore and wishing I was dead was the only thoughts that had relief as the goal. Anita encouraged me. I tried to barter with the Radiology Dr. to give me 25 treatments rather than 35. He said that 35 was the protocol. They almost delayed the final chemo treatment because my kidneys were damaged. I wanted to get it over with and they proceeded. I got up from that and rang the bell to celebrate completion. The next two weeks were the worst of all. I dropped 40 pounds. I had to go seven days a week for about a month, to get fluids to flush my kidneys.

 Somewhere along the way I asked Anita to stop by the Toyota dealership. My car was 10 years old and had 200k miles. I was ready for an upgrade.  Having been looking on the dealership website I was surprised to see there on the showroom floor, exactly what I wanted. I went round and round with the salesman and the manager, having to take numerous breaks to go puke and dry heave the nothingness from my gut. It took 6 hours and I couldn't sit through all the paperwork signing. Anita completed the process for me. It was the single best thing that I accomplished during this time.

It seems odd but in times like that, your relationship draws closer. I had been Anita's caregiver and the roles reversed. She still had her battles but she stepped up and filled the gap. I could see it taking a toll on her but she'd have it no other way. I really did want to die and she continued to encourage me when needed. I'm so thankful for her and it furthers my view that she is the best human I've ever known.

Eventually I was able to swallow and Egg Drop Soup became my every meal. A suggestion from Jon G's BBQ in Peachland, NC.

Two years out cancer and HPV free. I still see both ENT's and the Oncologist at six month intervals now. I'm finally shedding the fatigue all of it brought. I'm out walking and not living the pitiful sedentary life that had me in it's grasp. I needed to lose 15 pounds to get into my Marine Corps uniform for the upcoming 251st Ball in November. I'm down five with ten to go and very determined. 

Life feels good. I find joy every day. I'm laughing again and Anita says there's a sparkle in my eyes. I have some lingering issues, like I don't salivate very well and that makes it hard to breakdown bread and nuts. My kidneys are shot to hell and back, operating at 32% of normal. My neck spasms and I have to rub them out on a daily basis. These are the new normal.

We were able to fly to Hawaii for our 20th year together and 18th anniversary where we renewed our vows. We made a couple trips to knock some stuff off our bucket lists. I recently played in a Veteran's benefit golf tournament and volunteered at a Veteran's retreat serving a meal, cleaning a cabin and working in the garden. I'm going to participate in a photography outing. I consume a lot of water and eat more vegetables. All in all I'm in a good place and I wish it'd last for ever. The bipolar pendulum swings and Anita and I just ride that wave through the light and dark days, together, always together and that's the best part of my life, that will never change.

MG and Golf are team sports

My wife and I are a team in so many ways, and it hit me today that her diagnosis with Myasthenia Gravis and me as a Caregiver are a lot like a golfer and his caddy.

You might watch golf on TV and view the heroics and resulting accolades by and for the player but trust me, the caddy has been busting their butts learning the course, getting yardages, noticing the wind, the elevation how the ball is laying in what type of grass and is always keenly aware of the players current state of mind. Sometimes even giving a bit of false info considering how much adrenaline or over confidence the player might be feeling in the moment.

In the end the player makes the call on what shot to hit regardless of the caddy's info. And the player has to pay the ultimate price for the decision. Right or wrong, it's up to them.

And so it is with caregiving. You've got to be rather hypervigilant and understand the spoon theory of the daily allotted energy stores available for the patient, knowing from experience they'll pay later for what's spent now. You suggest, prod and cajole but in the end the patient is going to do what they're going to do and your care will not waiver. You'll be there to  support the result.

As to results... Here's a link to a video of Anita on WebMD speaking about advocacy for the MG Community.  https://www.webmd.com/brain/video/mg-friends-advocate?preroll=n

I'm so proud of her I could pop. Please share the video far and wide.

I remember the day

I remember the day, sometime back in 2008. We were newlyweds. Looking back over the years now, remembering what I was feeling, I shouldn't be surprised we're still together. It had all the ingredients in a forever relationship. My heart was in a constant flutter anytime I was with her. Every time I thought of her. I had to remove a closeup photo of her face from my computer desktop because I'd just turn into a wiggling puppy dog flopping around on the floor, peeing on itself from excitement overload.

We'd just been to the Zoo to meet with a family that were new acquaintances from some churchy stuff. On the ride home I saw flowers growing along side the freeway, so I pulled over and suggested we get a selfie.

Here we are 18 years later and my heart still flutters. Looking into her eyes takes me where nothing else can. We're each other's soft place to land. Our stories, the paths that led us together have faded and new paths form our journey, together.

So I stumbled upon this memory and decided to use it as artistic therapy while she mended from knee surgery.

  

Among the many photos that adorn our home, this is my new favorite and here are a couple other shots from the same day.

I posted photos of the painting in various stages on a social media site and a very kind woman commented, "If more men loved their women the way you love your wife, the world would be a better place." I agree and I felt seen. I felt thankful for what I have and that's a great place to be.

As the Beatles sing, "Love, love, love, all we need is love."

What's Love Got To Do With It

 I saw a video of an author who stated that he never wanted to work for any company. He not only didn't want to get in to the system of 8 to 5, 5 days a week and retire after 20-30 years, he didn't want to work at all. His perspective, like mine, is the ultimate objective is to get paid for doing nothing.

I like doing nothing, in fact I'm quite good at it and now in my mid 60's I think it's been earned, deserved and I find it quite desirable. 

The American Dream and consumerism mindset of wanting ever more material things might just lead to creating more to-do's or honey-do lists. Be careful what you wish for.

We were fortunate to have been able to live what we considered a good life with guaranteed income and medical coverage... then we inherited generational wealth. It has created more work than we imagined. In fact I've had to buy more tools in the last few years than I had in the previous two decades.

Initially I complained a lot. Eventually I accepted the load. Now I try to find the benefits of it. (Happy Wife, Happy Life) I've even experienced something similar to a runners high after exhausting myself.

I've waded into poison ivy, hand sawed invasive trees and vines, had the glasses knocked off my face while fire ants feasted on my bare ankles, been bit by spiders and had blood running down my face and arms.

I saw another video about the reward system that goes on in our brains when we do things with our hands. I can understand this. My wife is always busy with a crafty project as well as devouring books. I happen to enjoy my time in the kitchen. It's where I am the most creative and productive.

But just because you can do something and you're even good at it, doesn't mean you like or enjoy it.

At the end of the day, I don't enjoy any of the blood, sweat and tears...

But, as a very valuable friend once told me, "Love Does," and that's what gets the job done for me. I do it because I love my wife and family. No other reason.

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Something is amiss

 In my dream last night, a black widow made an appearance. The last time this happened I blogged about it with the title, "War is Coming."  Something is amiss. Something is lurking. I suffered from an impending doom syndrome for decades and it has waned significantly. But I feel something, down the pike, is waiting. Whether it's the past that's going to rear it's ugly head or a new foe, I don't know. I'll pause to consider... 

Recently we purchased an item for one of our grandkids from a garage sale. I put it in the truck bed and we brought it home. I unloaded the item and put it in the garage. The next day I was checking it out and couldn't figure out how to work it the way the seller had demonstrated. It had a battery in it and a remote control. I did not have any directions so I just began to investigate by turning it on it side and looking at the underneath. I could not see a way to access the battery, but I did see spider webs and a lot of spider eggs. So the battle began. I grabbed my handy spray bottle of 'Miss Muffet's Revenge" and gave the undercarriage a good soaking.

I inspected the item the following day, and there lie, the biggest Black Widow I'd ever seen, dead, with her red hour glass on display for all to see. 

Likely the matriarch of the spider eggs, or maybe they were hatchling meals in wait. I didn't consider this any kind of an omen at the time and I was glad that the inability for me to operate the thing led to the discovery of the infestation. It horrified me to think of the possibility of us having given this item to a grandchild without finding all this first.  

Fortunately, in this dream, I killed the venomous spider. I felt empathy for it. As though I'd entered it's territory and it reacted to my presence as it would any intruder, with curiosity but prepared to kill if necessary.

I shared this information with Anita, whose response was, "whatever it is, we'll be fine." We've certainly weathered our share of storms and it's been nice lately to not have to wear the armor every day and be on guard so to speak. Hypervigilance, is exhausting.

Caregiver: My MG Story

Caregiver: My MG Story
The Struggle is Real

My wife Anita and I are now in our sixties, we met in our late forties. We hit the ground running early in our relationship. Anita had already published a book about her first two mission trips to Ghana, West Africa. That opened the flood gates for me and we published another book about my life, in the first nine months of meeting. We traveled as far west as Hawaii and east to Africa. North to Nova Scotia and south to Belize. Anita was always happiest in the most inclusive and diverse conditions. A memory that stands out is a small dinner in our home with new friends from Sri Lanka, Mexico, China and Ghana.

Today, I am a Caregiver for the best human I've ever known, my wife Anita, who was diagnosed with MuSK+ MG in 2018. Witnessing the onset of what seemed like life threatening symptoms and the frustrations of finding any solution was the scariest time of our lives. Mind you during this time I was the only caregiver for my mother who suffered from Dementia. I am a disabled Marine Veteran diagnosed as BiPolar and PTSD from a Helicopter crash whom at times needs Caregiving myself.

I have a passion for those in the "Newly Diagnosed" category today. The onset of MG turns your world upside down. From my perspective as a Caregiver, MG life is all about Caregiving. In an ideal scenario an MG patient is diagnosed and treated under a Physician's Care. The MG patient learns their limitations and Cares for themselves. And the Caregiver fills the gaps.

It grieves me to hear of relationships failing under the stress of the life changing symptoms of any type of MG. MG patients don't have a choice. Caregivers do. Not everybody is up to the task and I have discovered Caregivers need care too. MG, like an addiction or other life altering condition affects the entire household. Immediate and major adjustments need to be made and endured.

To demonstrate how much of a impact MG has, we went from this to this in the blink of an eye. 

A Caregiver will often realize and accept that MG is not going away before the patient accepts it. There is a toll on every aspect of life. It consumes your psyche. All of your energy is in seeking information to understand what you're up against. You scour the internet, read medical journals, medication trial results and learn more medical terms than you ever cared to. Your sleep, intimacy, finances, diet and exercise is out of balance. You're balancing on a ball and juggling flaming knives; hyperalert.

My wife went from the highly educated witty super active woman that I met and married to being unable to hold her head up. She had difficulty chewing, double vision and when she spoke she sounded like Elmer Fudd. She began having difficulty breathing to the point where she couldn't sleep. She'd sit on the side of the bed in the middle of the night and gasp for breath. She couldn't bathe or dress herself.

Three trips to the ER in thirty days in the back of an ambulance finding frustration in the lack of knowledge by medical personnel about MG will get you into an incredibly aggressive or completely defeated state of mind. I was scared to death that my wife was going to die. She lay on a gurney still barely able to breathe, using a CPR resuscitator bag on herself, and no one is doing anything to help!

 Anita was finally diagnosed the day she was discharged the second time, still suffering from the same symptoms. Prescribed a useless medication that had the same symptoms for under dose as over dose.

We sought help elsewhere. Online research revealed Duke University Medical had a highly respected Neurology department in the area of MG. I drove Anita to appointments, four hours one way. She rode along utilizing a battery operated breathing machine, aka, a Bi-Pap that we obtained from a Pulmonologist she'd already been seeing for Asthma.

In a wheel chair that we'd brought along, I pushed her down the long unfamiliar hallways of a distant hospital.

 

Wide eyed I absorbed everything the Doctor told us. By the end of the visit, we understood the treatment. We both breathed a sigh of relief. We felt seen, cared for and hopeful that the current conditions could and would improve. We loaded up and made the four hour journey home. We stopped for a rare treat to celebrate. A Wendy's Frosty. Little things like that seem so wonderful when you've been wandering in the wilderness searching for answers.

We made one more trip to the ER due to a choking episode where the EMTs found us on the living room floor recovering. Her lips had turned blue and her eyes rolled back in her head while I desperately tried all I could to save her. Once again, I'd thought I was going to lose her. My hypervigilance grew. I can't count how many times I'd lay in bed or have a quiet moment and feel that MG is such a bully and wish it had attacked me instead of Anita. I'd take it all away from her if that were possible.

The future held appointments with her General Physician, a Neurologist, a Pulmonologist, an Optometrist, a Dentist and an Ophthalmologist. High dosage Prednisone induced Glaucoma, spurted growth of cataracts and created a macular crease. It also cracked a few of her teeth. A few surgeries later and weaning off of Prednisone things were better. You're fighting one battle after another.

Life didn't stop while we played catch up. I dropped 70 pounds. Grand kids were being born, events we could no longer attend were still being held. We lost Anita's Parents in a tragic car accident and my Mother passed away two weeks later. Talk about kicking you when you're down! The various stages of grief that were already evident in our lives were now amplified.  Then a pandemic arrived. More hypervigilance and less getting out and about. We pressed on.

Today, Anita's MG is well managed. She is driving to her own appointments, she's active with all her crafty projects and back to feeling good about being productive. I push her to achieve more than she thinks she can and I understand when she just needs to stay in bed longer and let her batteries recharge.

She's remained the most wonderful human I've ever known .
I have not always made the best decisions for my own care. When Anita regained her independence, I let loose and used alcohol to relieve the hypervigilance that gripped me. This was not productive for me and it stressed Anita and is counter to my role. I reacted to this with beating myself up,, having thoughts of, "I'm not a good Caregiver," which I prided myself on being. I gained 50 pounds back.

Caregivers must be as willing to accept their own shortcomings as they are for their patient's. You'll go through phases. You'll go from feeling incredibly determined to feeling completely defeated. From Energizer Bunny to complete exhaustion. But in time, I promise, determination and patience will prevail.

I try to find what I'm thankful for. We're thankful the kids have become compassionate adults and good parents. We're also thankful for Organizations, Groups and Individuals that seek to inform, treat and support families that experience the Monster of MG. MGFA and ARGENX to name just a couple.

Under great leadership they've pressured the system and made incredible, record progress with so many new treatments now available and in the pipeline as well as commercials on TV! MG is becoming a term people understand. It seemed relatively unheard of just a few short years ago.

Even with treatments that bring a tolerable sense of normalcy to the MG patients life and the Caregiver able to return to some activities that were sacrificed, I find that part of my psyche will entertain thoughts of impending doom in consideration of memories developed during the onset period of MG and now facing the long-term effects of immuno-suppressant medications on my loved ones longevity. I Try to stay present and celebrate the progress.

We try to give back. We've given our local EMT's literature on MG. We've shared with our friends and family what we've learned. We've found ways to give back.

Anita has volunteered for new treatment trials and is an MG Friend through MGFA. She gets assigned to individuals who have reached out wanting to be contacted and calls them as often as they desire. We wish we'd have found something like this in the early days. I am seeking to do similar for Caregivers. 

I donate plasma since so many MG patients utilize plasmapheresis as a treatment, and they even pay me for it! Did you know you can donate plasma twice a week? I highly recommend it if you're able. It's quite rewarding. (use this link for a referral we both can benefit from with information about a donation center near you.)

https://www.cslplasma.com/start-donating

Use referral code 0DLE5OWPDE or just tell them when you arrive for your first donation that you were referred by David Waters in South Carolina

This is the first step in doing the amazing at CSL Plasma. They collect plasma to make 24 life saving medicines for patients around the world. 

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 Today, life is good, we're thankful and closer than ever.

Please reach out. Find a group online or near you at the Myasthenia Gravis Foundation of America website https://myasthenia.org/

You need acknowledged, heard, understood, supported and cared for.

DW

RED Obit

Ruth Eileen “Bootsie” (Dover) Waters…

91, formerly of Columbus, OH, passed away peacefully at Pruitt Health in Ridgeway, SC, on Sunday March 1st.

Born on September 22, 1928, to the late Raymond Emmett and Ida Elnora (Cole) Dover, in Columbus, OH, Bootsie always had a zeal for life and music that never faded.

  

She met and married the love of her life, Thomas Alvin “Brother” Waters, in 1945 in Daytona Beach, FL. while he served in the Navy. In 1946 they moved to his hometown of Winnsboro Mills, SC. After the birth of their first two children, the local mill shut down and they moved to her hometown of Columbus, OH., where they remained and raised two more children until 1978 when Tommy passed away at the age of 51. Three of their four kids served in the military.

Bootsie then moved to California, Nevada, and finally settled down in South Florida.

Bootsie worked at General Motors, Suburban Freight, and even once as a grocery demonstrator. She also supported several community organizations, including the American Legion Auxiliary, Moose Lodge, VFW Auxiliary and the DAV.

Bootsie was known for being able to stretch a dollar, and loved going thrifting long before it was a trendy thing to do. No one knew what new treasure she may show up with after a trip to the thrift store or a local yard sale, but it was always an adventure.

While Bootsie enjoyed being independent and sailing the high seas, she moved back to Winnsboro, SC, to be closer to her son when her health began to decline. In her final weeks she especially enjoyed listening to piano music and viewing family photos with her son.

Bootsie will be missed immensely and remembered lovingly. 

She is survived by her sons Richard A., Terry D., and David L. Waters, eight grandchildren and six great-grandchildren. In addition to her parents and husband, she is preceded in death by her sister, Thelma E. (Dover) Krack and her eldest son, Thomas Alan Waters.

There will be a memorial service SaturdayMarch 14th at Lake Wateree Presbyterian church with visitation at 2pm and service at 3pm. In lieu of flowers, donations may be made to Lake Wateree Presbyterian Church.

The pain, oh the pain. I miss you Mama.

*Special thanks and credit to my step daughter Melody Braswell for her assistance in composing this obituary.