It’s shortly after 3:00 AM. I’m sitting at the kitchen table. My neck feels like it is on fire; a result of 30+ radiation treatments. I’ve got enough grease on my neck to lubricate the wheel bearings on an 18-wheeler with some left over. Theoretically, it helps with the pain.
I unbutton my top so I can be fed through a stomach tube. The radiation destroyed my ability to swallow. I can feel scabs sticking to my collar, pulling off my neck.
I’m spending 18 hours daily in my Lazy Boy. I’m full of mucus, my salivary glands no longer work. I wake up every hour, dry and unable to breathe. Coughing, gagging and spitting are a constant. Fatigue never goes away; it’s hard to concentrate.
I look across the kitchen. My wife Jo is crushing pills to blend in with my milkshake. Much like the mother of a newborn, she too is dog-tired. She sleeps in bed, and I chose the office chair so she could sleep. She still wakes up every time I cough too loud.
She looks up, catching me staring at her; smiles and asks, “What?”
I said, “You are amazing!” Earlier today I stared at our wedding photo hanging on the wall for over 30 years. Our eyes are locked together as we committed to one another, “In sickness and in health, till death do us part.”
Here she is, middle of the night, very tired, crushing pills so she can feed me, with a smile on her face. I thought, “Did we really understand what we were committing to at the time? My gosh I am so lucky. If the situation is ever reversed, I hope and pray I can be such a loving, comforting caregiver as she has been throughout this entire ordeal.”
Retirementor
MarketWatch dubbed me a “Retirementor”. I take that responsibility seriously; sharing experiences with others in hopes we can all learn from this phase of life’s journey.
When I discovered I had cancer, dear friend Chuck Butler, who has dealt with cancer for over a decade, was a true mentor.
I called Chuck after the follow-up PET scan and told him the cancer was gone. He surprised me. I can now call myself a cancer survivor and have an obligation to help mentor and encourage others. OK Chuck, here is my first attempt at doing so.
Meanwhile back in the kitchen
Jo put the syringe and the liquid on the table. Before feeding, she asked, “How is the area around the tube looking?” It was beet red. I pull back the plastic tab as she sprays the peroxide.
She mixes the pills with the milkshake and pumps the liquid through the tube. She has this down to a science.
With instructions to “stay put”. She put everything in the sink and grabbed a tube of heavy goo to put on my neck. As she is applying the goo, she looks at me, smiles and says, “Your eyebrows need trimming!”
In a tone of voice, I wish I had back – I responded, “I’m not interested in winning the award for the neatest eyebrows in the chemo room.” The smile disappears; her look is stern, “They look awful; trim them!”
The next morning was the start of a big day. Not only do I go in for radiation, but I also get the chemo pump taken off for a couple of weeks. I drag out of the chair, clean up as best I can, knowing I can shower once I get that damn pump removed.
I have a cotton shirt that works best with the goo on my neck. It is much more comfortable. Jo hung it in the closet with strict instructions not to wear it until it is ironed. It’s full of wrinkles. I shook it out a couple of times and put it on. I walked into the kitchen, she raised her voice, “I TOLD YOU not to wear that shirt until I ironed it!” I responded in kind, “I don’t give a damn if it is wrinkled, it doesn’t hurt my neck!”
The shirt immediately came off, Jo grabbed the iron with tears streaming down her cheeks. When things calmed down, I realized she was crying for two reasons. She was angry and felt guilty because she was so tired, she had forgotten to iron it; feeling she wasn’t doing her job.
That flare-up caused me to totally rethink things and hopefully changed our life and marriage forever.
Don’t allow fatigue to turn your marriage into the Bickerson’s.
Fatigue makes cowards of us all. I was thinking about myself, barely able to function. I realized Jo was just as tired as I was, yet she not only looked after me, she also did all the driving, shopping, cooking, cleaning, washing, ironing, you name it – while I tried to sleep.
In the discussion that followed, I asked her why she had been closing the door to her office lately. Her response – “Because I don’t want you to see me crying!”
We have all seen examples of the Bickerson’s. Recently a couple, who we love dearly, had a seemingly trivial issue come up; a forgotten appointment. It quickly started, “I told you to write it down two weeks ago!” “No, you didn’t!” Both faces were red and veins popping out in their neck as they bickered about who’s fault it was that an appointment was forgotten. No one wins…
I’m proud to say that so far, trivial things that used to set me off are now being put in proper perspective. When I need to make room for something in the refrigerator and rearrange things (tall things on tall shelves, short things on short shelves), I just smile to myself. There are probably hundreds of small things, like cleaning the electric toothbrush when I forget, that Jo never mentions.
The bottom line is simple. Getting frustrated with each other over trivial matters does not help either the one being cared for, or the caregiver. Just don’t let it happen.
Who cares for the caregiver?
We have a regular group of friends who gather most every Friday night for dinner. As I couldn’t eat, and my constant coughing/gagging was gross, I didn’t want to go to a restaurant.
I encouraged Jo to go with our friends for dinner, get out of the house. Go get your hair done, go shopping and get your mind off of things.
I’m now able to drink a milkshake. She recently confessed, “I’m at the point I can leave the house for more than two hours without feeling guilty and worrying about you eating something.” I’m happy to report, she and her girlfriends went to a craft show last weekend and were gone most of the day. Go- enjoy! I can feed myself.
This applies to the entire family. If children are nearby, they need to pinch-hit from time to time – the caregiver needs a break too.
The captain must always know the condition of the ship.
My oldest son, a Naval Academy graduate, has preached this many times.
We had numerous discussions with doctors about the treatment and expectations that would follow. Be warned, they all start with, “every patient is different.”
One doctor told me I would be eating normally in a matter of weeks. Whether it was swallowing, time for the salivary glands to come back or when the constant fatigue would go away, the expectations they expressed were overly optimistic. I am doing well, ahead of the norm, yet the unrealistic expectations became a problem.
Another doctor told me, “You are amazing!” I asked why and was told, “Half the people your age don’t make it through the treatment.” I was flabbergasted. Why didn’t they tell me when we were discussing treatment options?
I confronted one doctor and was told, “Dennis if we told many of our cancer patients the truth, they would walk out the door and never come back!” I will yield to the doctor’s experience but the lesson to me is clear.
| When you get a tough diagnosis, demand to be told the truth about treatment, side effects and recovery. You MUST know the condition of your body! You are the captain of your own ship. |
While you might not like what you hear, how can you make tough life decisions without all the facts?
Pay attention to your body.
In the middle of the night, when you are unable to breathe through your bone-dry nose, it’s hard to drag yourself into the bathroom to flush your nasal passages with saline solution. Ignore the message and expect a nosebleed.
When your body says its nap time, take a nap or you will pay for it later, just that simple.
When we are working, we have a tendency to ignore things. Don’t do it when you are being treated and recovering; it could slow down the process.
Doing the job
Hopefully our readers are never faced with these kinds of situations. Tough diagnosis, treatment, and recovery is stressful and challenging for all concerned. By sharing our life lessons, I’m hoping to make the process easier for others. Chuck would say, “I’m just doing my job.”
Take those marriage vows seriously. Work together, minimize stress and you may find your life, and quality of life is positively affected.
For more information, check out my website or follow me on FaceBook.
Until next time…
Dennis
“Economic independence is the foundation of the only sort of freedom worth a damn.” – H. L. Mencken
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Thank you, Dennis, for being my inspiration today. You and yours will remain my thoughts and prayers. Your poignant perspectives are reminders that the present is gift and to seek the silver lining of gratitude at all times and in all things. Take courage, hold onto hope, and as I advised another contributor here (Stucky) one time: Hold onto the good and let go of the bad. May you find peace and serenity amidst your pain and may you love and cherish always. Godspeed
So glad that your cancer is gone, Dennis. God bless you and your selfless wife. You are indeed blessed to have such a beautiful lady as a caregiver. May you soon be back up on your feet leading a busy life with her. Peace.
Even though I don’t know you, your article was inspiring and from the heart. Thank you and God bless.
Dennis, last winter I went through an ordeal I never want to repeat. My poor husband, at one point, was so overwhelmed he said “I meant it when I said it but I had NO IDEA.”
Sickness and in health is a really daunting commitment.
He asked later when it was going to be his turn. I told him, honestly, after 17 surgeries-5 brain surgeries including 2 shunt placements and 3 revisions, 5 invasion abdominal surgeries including 3 emergency operations, 3 optical surgeries to correct vision impairment from brain surgery and three outpatient hernia repairs… that it did not look like he was going to get a turn.
I’ve had some other procedures that required hospitalization, but those were actually more like a vacation to my husband.
Anyway, lucky you and lucky me.
It could be worse. He whom I will not name could come here and claim you are a liar.
Hey! I know you have a great sense of humor and this makes me laugh almost every single time.
Laughter really is the ONLY medicine worth taking in large doses.
Day 24 of 54. St. Jude. Desperate Causes.
WOW MG. We comment here and read others comments never really know each other or our individual situations. Sometimes we argue over trivial matters and disagree over minor shades of gray. Fact is none of us get off of this rock alive. Some of us suffer more than most. Some luckier than most. Some more blessed than most. I would not wish what you have been through on even people that I truly despise. God bless you and yours and everyone here at TBP… Chip
Wow! High maintenance, aren’t we! ? You know I’m kidding, right?
I had my year of torture. I can relate with Dennis’s experience. I worried about my better half who was working at home full time and taking care of me.
I know… I don’t mean to seem insensitive. It is just that being sick sucks. Having someone who loves you enough to endure it with you makes it tolerable.
Blessings to you and yours! I made a Cherry Berry pie!
dennis,
it’s good to read that you’re doing well–
i receive your newsletter & just started getting them again so i was hoping it meant you were improving–
stay well —
Hows Obamacare working out?
That was difficult to read.
Life and death is offputting.
Difficult indeed but at the same time most beautiful. His precious wife….being a caregiver is almost as difficult as what the person receiving care is going thru. God bless and Godspeed to both of you.
Caretaking is difficult, Mygirl…I was lucky — if you can call it that — to be the manager of a gentleman whose wife was going through a rare small intestinal cancer when my wife was diagnosed with breast cancer. After his wife had passed (at a young 41), he divulged to me that one morning, he was driving into work and was sobbing. He asked God to give him some sign as to why this was happening. That was the day I called him into my office and told him of my wife’s diagnosis.
I don’t wish cancer on anyone, not even my worst enemy. It has the potential to destroy the victim and the family. My wife was 38 and my sister was 40 when they were diagnosed. We had a 6 month old and she couldn’t hold her for months.
If we hadn’t blown trillions on wars and welfare, the capital that was wasted would have assuredly been more wisely allocated and we may have even had a cure by now. So when I say I will declare overt war on the healthcare/govt. industrial complex if/when I get into office, I’m not kidding in the least. God help them because I sure won’t.
I’ve done my share of care giving with my mother and will do the same when it is necessary for my Father. One foot in front of the other, one day at a time. I won’t go into the hospital stays, surgeries, EMT calls because most people who have been there understand.
I’ve had my bout with cancer, caught early, thank God. I live with some chronic health conditions, some days are better than others but by and large, I’m doing ok. I can’t do what I used to could do without hesitation (ride a horse) and have had some serious down time as a result of illnesses, some that are still with me but I’ve learned to manage them.
Getting old isn’t for sissies, enjoy what you can today. I agree wholeheartedly with you regarding the wasted monies and will vote for you should you run for office.:)
Never gonna run. Working on recalling our mayor and refuse to be drafted into that shit-show, no matter how much they push me…
Glad you’re better and am grateful I got to know the true you.
Dennis,
Make sure you ask for a lidocaine rinse. It helps a little with burning mouth and makes swallowing easier. Also, make sure you get a stannous fluoride(.64-.68?) toothpaste and use it daily. You are susceptible to rampant decay with poor/no salivary flow. You dont need any dental problems….Best Wishes
Get dry mouth lozenges, most are minty but Cottonmouth makes some fruity ones my guy likes. And chew gum! Don’t want until you have 12 cavities like he did, start now!
Xylitol containing gum, sugarless !!!!!
OMG this sounds almost exactly like what my guy went through two years ago. Throat cancer I assume. His had metastasized into his bloodstream and went to bone. He has a scan next month, it’s always scary. His parents stayed with us for three months as he went through treatment, that made things a lot easier but by no means easy. As long as yours didn’t metastasize your chances are pretty good, most cases don’t.
Sir, we communicated before I even found this platform.
I’ve been hovering around this place for about 2 years.
Back when you were writing a newsletter under DC’s flagship,
we exchanged emails, after I read a few of your tutorials.
I kept them all, archived, because of your willingness to reach out with advice
and sharing the knowledge of what you learned.
One of your last submissions here briefly mentioned a personal health challenge,
I think it was about 6 or 8 months ago.
Then, for about 6 months, you were preoccupied, and now I know why you were MIA for a time.
Upon your return here, about 2 weeks ago, I said Welcome Back, and hoped you were on the mend.
With this article today, I understand a little bit more, and I appreciate the effort it took to submit it.
Different topic altogether, but one that has wise advice still.
I’m big on Gratitude, and not taking our closest mates for granted.
Being an example for others to follow in that respect is good and noble. Especially in front of toddlers.
Wish you all the best, Mr. Miller, for a speedy recovery and return to comfort and tolerance.
Every day is a gift. Even if yours or our current state of affairs is extremely difficult.
Peace Be With You and Jo, as the holiday season approaches.
God Bless.
We hack on people, burn them, and poison them (surgery, radiation therapy, chemotherapy) to treat cancer. Quite barbaric. But it WORKS. Twenty years from now we may look back and think we treated cancers with the modern equivalent of stone knives and bearskins (apologies, Dr.McCoy), but people with cancer who used to have a death sentence now live long lives.
“Another doctor told me, “You are amazing!” I asked why and was told, “Half the people your age don’t make it through the treatment.” I was flabbergasted. Why didn’t they tell me when we were discussing treatment options?”
I had to laugh at this.
Over the years I’ve learned that good compassionate physicians are capable liars. They are that way not because they are dishonest but because the truth is the human body is actually a fairly delicate thing when it comes right down to it and if folks knew just how close they were to death at certain moments it would likely do more to decrease their odds of survival.
To a large degree we are what we imagine ourselves to be. Attitude matters. You have a good one. I hope things work out for you and your family.
Take care.
My neurosurgeon told me I was his first adult patient to walk through his door for followup exam after the first shunt placement.
Then, he informed me I was actually his FIRST adult onset patient. All others were elderly or children with “water on the brain.” At the time, I was one of two he’d heard of in Oklahoma. Weird.
That’s why he insisted on doing all five. I think it gave him status at the Neuroscience institute.
Maybe this will help someone, somewhere, at some point in time:
Two known cures, plus a third in experimental phase, at least until they release the patented cures.
First:
http://www.dailymail.co.uk/health/article-5230201/Pensioner-used-turmeric-fight-blood-cancer.html
The curcumin component they talk about can be bought at the below link: dosage is 8g per day. It’s $189, for a 1kg package, which would last 125 days if you were taking the full 8g for an active cancer.
http://www.ebay.com/itm/Pure-Curcumin-95-Natural-Turmeric-Extract-Bulk-Powder/122008042580?epid=1372915392&hash=item1c683efc54:m:myWehAV1WZX193uQ-_yeQig
Here are capsules and a capsule machine if you want to encapsulate the curcumin. They are cheap. You can buy machines that do more capsules at a time for a little bit more money.
http://www.ebay.com/itm/1000-EMPTY-GELATIN-CAPSULES-SIZE-00-BULK-Kosher-Halal-1-000-Gel-Caps-Pure-USA/111771007400?hash=item1a061239a8:g:E6QAAOSwfcVUEjKr
https://www.ebay.com/itm/THE-CAPSULE-MACHINE-Filling-Filler-POWDER-HERBS-VITAMINS-PILLS-MEDICATION-00/333273225669?epid=1500615724&hash=item4d98a1d9c5:g:Ss0AAOSwTQFdNM0w:sc:ShippingMethodExpress!04989!US!-1
Don’t know how much an individual capsule weighs when it’s full, but you could go down to the local post office and have them weigh a few of them until you get 8g (0.257 ounces) worth.
Secondly, Alkaline diet. I know someone who’s client cured her own cancer by going on an alkaline diet to put the body pH on the alkaline side. Cancer cells can’t survive in an alkaline environment.
” The Acid-Alkaline Diet for optimum health”, Written by Christopher Vasey, ND.
Thirdly, is this. Not sure how accessible the treatment is.
http://www.bbc.com/news/health-44338276
God Bless to you all.
Turmeric/Curcumin is truly amazing stuff. I put tons of turmeric root in my bone broth which I drink every day. For alkalinity just drink some water with lemon and baking soda. Sorry to hijack, just giving a plug. God Bless Dennis.
HSF, what is that tea you drink to complement turmeric and garlic?
Positive attitude , been there . Feeling like your going to die and afraid that you won’t . Then you see some person way younger and in way worse shape then you and you realize the worst day you had is one of their good ones . Remember the brooding buddha !
On an Ancient Wall in China where a brooding Buddha blinks gravely written is the image “It’s later than you think . The clock of life is wound but once and no man has the power . To know what time his clock will stop at late or earlier hour ! Now is all the time you have your past a golden link go cruising now my brother for its later than you think !
Enjoy your road back to health and never waste a second chance
Godspeed to you Dennis … Thank you for sharing ….
After some ‘stressful’ times at work over the last two years (in quotes because it pales into comparison to your battle) … Puts it ALL into perspective (mostly as it relates to how I should be thankful for my health, shouldn’t let the work shit get to me (and how I should ABSOLUTELY not let it affect how I treat those closest to me)).
Although there are some crazy cats out here on this site in the comment section, the loose bonds formed with stalwarts like you are very reassuring.
Keep fighting the fight, my friend and give my best to your loving wife!
I read all of Chucks offerings, he is an inspiration and I would guess a true friend.
Thank God for our better halves. I don’t know what I would have done without mine during my treatments 3 years ago.
I hope I don’t have to return the favor. I don’t know which is worse. Being the caretaker or the one being taken care of.
Don’t get frustrated with yourself if your energy doesn’t come back as fast as you want it to.
Hi,
Thank you all for the kind remarks, prayers and encouragement.
I’m happy to say the stomach tube is out and chemo port removed. I am a long way from being able to eat normally, but a heck of a lot better off than a lot of people. I was lucky.
I’m finding an instinctive natural bond with other cancer patients. No matter what type, it is scary and really does make you pull together with your loved ones. The hugs are more genuine and the discussion is warm.
I’ve heard from many patients and caregivers alike. They all have one thing in common, a sincere and genuine concern and love for each other.
One doctor said, “Hey, be thankful you are alive!” While he is correct I told him, “We have higher standards than that.” He looked at me like I was crazy. I told him “I want to live the rest of my life with a reasonable lifestyle, and most of all do not want to be a burden on my family.” My guess is a lot of people feel that way.
I really appreciate all of you who have taken the time to respond. It really has meant a lot.
Best Regards,
Dennis Miller
Your story hits hard, my wife is going through radiation therapy. She’s had 20 so far and has 13 more . They gave her a break due to weight loss, I’ve been trying to fatten her up. She’s had her thyroid removed and has had 3 neck resections. 2 cesium 131 uptake and some chemotherapy. They’ve removed her jugular and paralyzed one of her vocal chords. The cancer has also spread to her lungs, she’s been told that the chemotherapy will only slow it in her lungs.
Glad you’re doing well now.
I’m so sorry, don’t forget to take care of yourself too. Get some family help if you can.
Thanks for that perspective Dennis. I know my wonderful wife would be up to the task. But would I? I sincerely hope so. It sucks to get older and older. Don’t know if you have a relationship with the big man, but prayers sent never the less.
Dennis I am so glad that you are free from this awful disease. Your wife is a saint..God bless her. Your story is all the more amazing in that traditional cancer treatment protocols often don’t work but just buy some time. Most people still have great trust in our modern medical techniques and they look at their Dr’s as god’s in white coats. I must say I would not choose chemo and radiation. The best it can do is give the patient a little more time. The chemo/radiation paradigm for treatment is really quite brutal and ultimately deadly and eventually it will kill the immune system altogether. This happened to several friends of mine and it was heartbreaking to see. My best advice is to seek alternative natural treatments for cancer. Find a holistic doctor who has a proven record with treating cancer. Many other very effective natural protocols for treating cancer exist and should be considered as viable options. Cancer is a greatly misunderstood disease and it should be obvious after all these years with cancer rates skyrocketing that the medical profession is barking up the wrong tree when it comes to their theory of cancer and its genesis. Quite simply they have got the wrong theory which matters tremendously in how to treat this awful disease. But, ultimately, it is a personal decision. Hope you have many more years of great health and happiness.
Dear Reluctant Warrior,
You voiced a major concern of mine regarding treatment. I was told that with the type of cancer I had, the treatment we opted for (aggressive) has a 98% probability of a cure. I asked what that meant. I was told that the studies showed that three years after the treatment the cancer did not return.
Is that a cure? It made sense to me at the time. I asked if there were studies longer than three years and was told they did not know of any.
I too know many friends who thought they had beat the horrible disease, only to have it come back later with a vengeance. My friend Chuck Butler has dealt with it for over 12 years. He recently told me how he held his 3 week old granddaughter and sung her to sleep. While he has been through hell, he still believes he has so far played cancer to a draw and is grateful to see his children get married and get to know his grandchildren.
I’m almost 80, much further down the road than when Chuck was diagnosed. I think opting out of treatment has much to do with age, attitude and current health.
In the meantime, enjoy life…
Best Regards,
Dennis Miller
Around 2008 my wife was diagnosed with breast cancer and took the hard path: surgery, chemo, radiation. It was painful, and she said once if it recurred she would not fight it again; weakness, pain, and the cancer or the treatment provoked existing annoyances into maladies (look up scleroderma; it never bothered her until after the disease / treatments).
But it’s been ten years, and she’s still here. It’s costs have been heavy in all sorts of ways; she has little strength / stamina, pain in joints and limbs, a light sleeper she now finds it tough to get a solid night of sleep in. Her kidneys took damage from the treatments, and liver as well; she cannot use aspirin much, one painkiller is now forbidden and she doesn’t drink, so the pain stays on a lot.
That being said, she still enjoys life; she got to see both kids graduate college, we’re still financially afloat and the sun still rises every morning. How much longer, who knows? But while she’s here I will be here to help her, and she’s still herself so we will carry on.
Spend the time with your family that you will wish you had once they’re gone.
2 Corinthians 4:13-18 KJB… “We having the same spirit of faith, according as it is written, I believed, and therefore have I spoken; we also believe, and therefore speak; Knowing that he which raised up the Lord Jesus shall raise up us also by Jesus, and shall present us with you. For all things are for your sakes, that the abundant grace might through the thanksgiving of many redound to the glory of God. For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day. For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal.”
Not to make light of affliction in any way… just perspective is all.
Grace and peace…