Just because you give it a name

I have become fairly astute during these years, about the patient end of medical treatment of serious illness. And become more and more disenchanted with doctors as care-givers as opposed to being what they really are – distributors of treatment.

From assertive to aggressive

Almost seven years ago, I began the Cancer Grand Tour. After an initial misdiagnosis of type by a pulmonologist, I met the man who has been my oncologist ever since. He and I clicked immediately, and many have heard me say that I love him. He treated me for Anaplastic Large-Cell Non-Hodgkins Lymphoma, and got me to a brief remission. When that failed, he hooked me up with my transplant doctor, and did the conditioning for a stem cell transplant. Finally (I hope!), several years after the transplant, he was part of the team that treated my Invasive Ductal Carcinoma Triple Negative breast cancer – surgery, chemo, radiation

I have become fairly astute during these years, about the patient end of medical treatment of serious illness. And become more and more disenchanted with doctors as care-givers as opposed to being what they really are – distributors of treatment. The whole body-mind-spirit concept seems completely beyond them. Great technicians. Lousy empaths and communicators.

More and more, I have heard from women (true confession: I never asked a man) that they just couldn’t communicate with their doctors. Not that the women didn’t speak; that the doctors didn’t listen. Actual communication is not on the checklist.

Knowing that I had a routine appointment today with my doc, I began rehearsing a speech. And I got one down pat. Part of these appointments, since the breast cancer, is that he does a breast exam. Now, the backstory:

My treatment began with surgery. Traditionally, it should have begun with chemo. I couldn’t begin that way. The traditional pre-surgery chemo cocktail is loaded with Adriamycin, which carries with it a lifetime limit. As this therapy was also part of my treatment for Lymphoma, I was already almost at my lifetime limit, and in danger of permanent heart damage. The chemo cocktail used post surgery uses different drugs.

Hence, surgery first. But with a much larger target. Resulting in a much larger incision, and a larger amount of scar tissue.

Almost three years later, I am still in daily pain. Some days, just an ache. Other days, intense. Many daily movements, excruciating.

I have had regular visits with both surgeon and oncologist. Two to four times per year, for almost three years. Each time, I talked about the pain. Each time, their exams resulted in the diagnosis of justscar tissue. And nothing beyond that.

I have had it. Today, I would fight back.

I refused a gown when taken to an exam room. When my doc entered, he noticed, and asked why. I told him we needed to have a chat. I told him about previous visits with both him and the surgeon…about me telling each of them about the pain…about them “poking around” and telling me “It’s scar tissue”. Then I told him “Just because you give it a name doesn’t end the pain.” (Feel free to use that line – it took several sleepless nights to get it just right.)

I told him about pain relief I had tried. Tylenol. Expired Oxycodone. Cannabis salve made for me by a friend who lives in a state where it is legal , shipped to me and used by me illegally. I told him the Tylenol did nothing. I didn’t want to fall into the opioid trap. And the salve gave considerable relief, but carried with it a distinct odor and stained everything it touched. But. I said that I believed if there was relief in the cannabis salve, there must surely be some legal (for me) medication that he could prescribe.

He said “No”.

I grew more forceful. He retreated. Said he could sign the permission for cannabis for me, if I wanted it. “And there is lymphedema physical therapy…” He trailed off as he saw my face. I told him no one had mentioned physical therapy before.

Stunned silence.

He promised to have his staff set up referral contact with the PT providers. He promised to sign the forms from the State to give me access to cannabis dispensaries. (Note: last November voters in MI made recreational pot legal, but the process won’t be complete for at least a year. Currently, cannabis is available only in medical marijuana dispensaries and only with forms from a doctor.)

For the first time, our visit ended with a handshake rather than a hug. That makes me sad, but I am proud for standing up for myself and proud that it was obvious by his demeanor that I penetrated his technician mode and reached his empathy mode.

Just because you give it a name doesn’t end the pain.

Why the blog name?

World Cancer Day

When I began writing this blog, I named it what I did because there were things I wanted to say and conversations I wanted to have and can’t be sure how few “precious days” will be mine to do so.

I know. I know. No one knows for certain how many days they have. But when you are almost 70 and your body has tried to kill you several times, you can be relatively certain that the number of days will be fewer rather than greater.

<Whining alert…>

My first diagnosis of cancer was in 2012. In the early months…even years…there were people who really stuck with me. There still are. A few. I have said repeatedly that I may not have cancer right now, but cancer will always have me. I understand that that gets boring for people. Hell. It gets boring for me. It’s not like I spend every word I speak, talking about cancer. But my life does. The activities I don’t have energy for…the germy crowds I avoid…the skills I have lost and haven’t been able to recover. They all speak volumes about cancer having me.

And people drift away. Get on with their lives and other normal things. Contact becomes less and less.

People who experience a serious illness when young often have an easier time, a faster and longer-lasting recovery. More energy to enjoy and appreciate every day. A word I use – often in a pejorative sense – is “perkier”. Strengthened by the adversity they overcame. Yes. Young people die, too. I’m writing about the survivors and the thrivers.

I was 63 when diagnosed, and will be 70 in a couple of months. Realistically, my best-case scenario is still decades shorter than someone diagnosed at 25. So those soul-baring conversations take on more urgency for me.

My initial – wrong – diagnosis was an untreatable lung cancer. My husband, who had seen the radiographs, raced the doctor down the hall so that I could hear those words from him, not a stranger. I expected something like that diagnosis, so there was no shock. But there was also no sleep for me that night. Planning for a short future. One of the things I really wanted to take care of was setting up a time for a “final confession” with one of my priest buddies. Hours of guided spiritual self reflection, followed by sincere repentance, and finally absolution. He somehow never found the time.

I also wanted one-on-ones with my family. Some of that happened. Most didn’t, except with Bob. Ditto with friends.

The only way this can be read is as if I am casting blame. And in one sense, I guess I am. What I need you to know is that others also cast it on me. I am blamed for my attitude. I am blamed for occasionally – and publicly – talking about dying, and being Debbie Downer in the process. I am blamed for the distance that some feel when they are around me. I am blamed for not continually spouting encouraging, positive affirmations to any and all. I am blamed for just not getting over it.

I spent most of the day ignoring that it is World Cancer Day. People seem to want me to pretend…so I was pretending. But if I can do one thing for my fellow senior cancer peeps it would be this: When you encounter us, just acknowledge who we are, and let us honestly be us.

You have no idea who much relief that can be.

NB’s KISSTHEROAD

Also known as Kissy.

This picture was taken while she was an active racer at Palm Beach Kennel Club. She raced 131 races, winning 29 – a really good record. If you would like to see replay of one (or many) of her races, go to http://www.trackinfo.com. Click on Greyhound. Click on Dog Search. Type in her name.

Here is what she looks like as a couch potato:

Kissy is a good-natured pupper – albeit with an occasional Princess personality. She has a facial expression that says “Peel me a grape”. She enjoys the camping trailer, just as Sheiky did before her.

I’m certain there will be Kissy stories in the future…but now it’s time for the Super Bowl.

As I was saying…

I never did get around to that post about Kissy.  And this one won’t be about her, either.  At least, not technically.

It was a tough, emotional end of summer, fall, and early winter.  I fell into a deep depression, complicated by overwhelming cynicism.  Unexpected people picked up on that, and responded with amazing kindness.  Others unexpectedly either ignored or blamed me for where I was.

I have reached the “whatever” point.

Although the actual temperature is below zero for the third (fourth?) straight day, the sun is out. Our pipes are frozen, but we have several five-gallon bottles of water. (That doesn’t help me shower, though. Ick!)

Kissy is every bit as precious as her name. If I could figure out how to post a picture of her in WordPress’ new format, I would. She does not, however, possess Sheiky’s intuition about me. I still mourn his loss, while being “greytful” for her gain. (That word is a greyhound thing…..)

Anyway. In an effort requiring massive will to overcome inertia, I will get back to this blog – including learning the new format. I think it might be a good thing for me to do. Expect to hear from me – possibly even often.

As a woman I used to be related to by marriage used to say, “I’m some better, but I ain’t well yet.”

See ya!

Flying Sheik

In the early fall of 2011, Bob and I drove down to Tampa to pick up our new dog – who raced three whole maiden races (winning one) – and we call now Sheiky.  Bob flew home, and (the late, greyt) Myke Stewart and I drove back with Sheiky.  I had plans for him.  We would be constant companions.  He would go everywhere with me.  He would even learn to do stairs – something my previous greyhounds had never learned.

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Myke went back to Florida, and fall turned to winter.  I had a cold…or cough…or something that I just couldn’t shake.  Multiple visits to my long-time fancy doctor resulted in assorted antibiotic prescriptions, but no firm diagnosis nor cure.

By spring, not only was I really sick, but I also decided a change in doctors was in order.  On my first visit, he took my history, listened to my chest and my cough, and directly admitted me to the hospital for pneumonia treatment.  I was in and out a couple of times before a pulmonologist did his favorite test, and came back with a diagnosis of untreatable lung cancer.  I was sent home to die.

All I could do was lay on the couch, while Sheiky snuggled with me.  The fascinating thing was that his paws were almost always in the same place on my chest.  Later CT scans showed that he kept his paws on the places of the largest tumors in my lungs and chest.  Almost like a healing minister, laying hands on a supplicant.  Actually…exactly like that.

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A few weeks later, the pulmonologist called to say biopsies had disproved the lung cancer diagnosis, and that I actually had a rare but treatable form of Non-Hodgkins Lymphoma.  What followed was a long period of chemo, PETscans, remission, remission failure…rinse…repeat.  A stem cell transplant.

Sheiky and I spent a lot of quality couch time together.  Actually, the only time he was stand-offish was when I came home from 5 weeks in the transplant center.  The meds that they used to keep the stem cells fit for transplant made them smell like tomato soup.  That’s what I smelled like when I came home, and it freaked him out.  But only for a couple of days.  Then, we were back on the couch together.

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I worked myself up to walking a 5k in April of 2016.  It was a lot of work, and I was afraid I would embarrass myself…but I finished.  The.  Very.  Next.  Morning.  I saw the unmistakable sign that I had breast cancer.  Thinking back then, I realized that Sheiky had been doing the same “laying on of paws” that he had done with the lymphoma.  And I realized that he was my Cancer Whisperer.

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In early February, We took Sheiky to the vet, to have some swelling checked.  The diagnosis was lymphoma.  We spent a lot of time talking about options.  I asked about chemotherapy, and discovered the regimen for dogs was the same as the regimen I had received, the first time I had lymphoma – CHOP.  It was brutal, and there was no possible way I could do that to him.  We chose palliative care, and knew we would have about two months.

………………………….

I began writing this post in late March. We have had some quality time.  Sheiky took two trips with us in a new trailer, and he enjoyed them.  He has had more enticements to eat than is probably healthy – but what’s it going to do, kill him????

Today it is May 3 – my birthday.  Sheiky has told us it’s time.  Selfishly, I can’t bear to send him to the Rainbow Bridge on my birthday.  We have an appointment for tomorrow at noon.  We are in the last few hours of Flying Sheik.

My heart is broken.  Godspeed, Sheiky.

 

 

 

More about me

I like this:

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and this:

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and this:

Thumbnail View 6: Dolce Vita Tay Ankle Boots

and this:

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I love this:

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with the help of her:

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and especially, him:

I wish I could spend much more time with her:

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I want to finish this, this year:

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I want to spend a long weekend here:

Hotel Walloon Lake Winter

and two weeks here:

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with a side trip here:

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I am a huge supporter of:

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as well as:

Leukemia & Lymphoma Society Logo

And I can, because of him:

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I’m counting on strong women like these:

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and her:

I like:

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and:

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And I love:

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Now for a cheat sheet:

Pierogi, Sever Yzerman with the Stanley Cup, pink velvet shoes from Anthropologie, a Cosmopolitan

Lady Justice, Ruth Bader Ginsburg, PRESIDENT Barack Obama

Sophie

Son Bob’s unfinished quilt

Walloon Hotel (Walloon Lake, MI), the pyramids at Giza, Petra

DKMS (international blood donor registry), Leukemia and Lymphoma Society (big sponsors of blood cancer research), Dr. Hanna (my oncologist)

Clair and Sophie, Malala

A random goat – I love them all, Sophie reading to Bella, Sheiky

 

Here we go again?

Recently my body has been telling me things that my doctors won’t believe.  And it gets more and more frustrating that they put their complete trust in their tests, while ignoring what my actual body is telling them, through conversations with me that are short and perfunctory, disbelieved and ignored.

I want to scream!

It calls to mind an incident with my son when he was a toddler.  I don’t remember the offense, but I do remember yelling and not listening to him.  A diatribe, not a give-and-take conversation.  Finally I asked why he had done…whatever…and his tearful, frantic response was “I’m trying to tell you”.  To this day, when I clearly hear his sweet voice in my memory…my tears flow.  (I love you, Bob!)

I am currently waiting for a return call from the nurse at my breast surgeon’s office, to tell her of new physical developments and see if other tests should be added to my scheduled diagnostic mammogram on Friday.  I have no confidence that I will receive this call prior to the appointment.

Please read the following article, from NPR.  I wish my doctor would.  Everything she says as a patient is true.  If the body is treated, but the spirit is ignored, healing can never be complete.

{Note:  I have just spent a half an hour on chat with a tech for WordPress, trying to paste more than just a link.  Since the tech sees no reason why I would need to do that…and WP does not seem to have the capacity, anyway…I will try to copy and paste a few paragraphs, followed by the url.  Wish me luck.}

“Brush With Death Leads Doctor To Focus On Patient Perspective

The searing abdominal pain came on suddenly while Dr. Rana Awdish was having dinner with a friend. Soon she was lying in the back seat of the car racing to Henry Ford Hospital in Detroit, where Awdish was completing a fellowship in critical care.

On that night nearly a decade ago, a benign tumor in Awdish’s liver burst, causing a cascade of medical catastrophes that almost killed her. She nearly bled to death. She was seven months pregnant at the time, and the baby did not survive. She had a stroke and, over the days and weeks to come, suffered multiple organ failures. She required several surgeries and months of rehabilitation to learn to walk and speak again.

Helpless, lying on a gurney in the hospital’s labor and delivery area that first night, Awdish willed the medical staff to see her as a person rather than an interesting case of what she termed “Abdominal Pain and Fetal Demise.” But their medical training to remain clinically detached worked against her. Later, in the intensive care unit, she overheard her case being discussed by the surgical resident during morning rounds.

I had a hospitalist literally stamp his feet at me, when I got tired of his inability to listen and told him I was going home.
I know that there are people who are getting tired of me still talking about health issues after 5+ years.  My body is working ( or so I will say, unless Friday’s test(s) prove otherwise), so I should be acting well.  But my spirit has been disbelieved, and I continue to suffer the consequences.