Showing posts with label Cancer Club. Show all posts
Showing posts with label Cancer Club. Show all posts

Sunday, September 30, 2018

Not Cancer — Life resumes


Nothing like the sight of the sea and wind-varnished grasses to make
 one appreciate being alive.

During my recent six-month dermatology check-up,  my doc noticed an irregular spot on my upper back.  
It was not raised but was colorful. Brown and red is not a good combo for skin lesions, she explained.

"We could keep our eye on it until your next check-up (in six months) or take it off now," she said.

"Get rid of it! " I said without hesitation.

She did a "shave" biopsy, I asked to take a gander at  the fleshy disc before it was shipped to a pathology lab, where it would be scrutinized for evil.

It looked harmless enough. But I remember another shave biopsy in late 2015 that I'd asked to see. Tiny, pink, translucent.  It WAS evil. Nineteen days after that biopsy, my then-doctor called me with the bad news.

I had a particularly nasty form of melanoma called a Spitz nevus. 

The initial pathology report said it was metastatic, which means it was spawned by a primary tumor lurking elsewhere in my body.

A second opinion called it merely invasive.

For an excruciating month, I had cancer.  Chest X rays, blood tests, surgery, and breast biopsies were bad enough, but the worst part was NOT KNOWING whether the invasive devil had invaded. 

I was cast into what I called the Cancer Club in the first of a series of posts I wrote during that time.  I was angry and scared. 

I wrote furiously—my way of coping. I wrote too much, probably. The writing was therapy, and reader responses —especially from cancer patients and survivors—were heartwarming and encouraging.

The best of the blog posts was Back from the Brink - 10 Lessons Learned,  (The other cancer-related posts are linked from that one if you're interested.)

This time around, I was calm, but still worried at the prospect of a bad diagnosis.

However, I knew that even if the discolored spot was malignant, it was being caught early. I  was thinking how lucky I am to have dermatology exams every six months, and a great dermatologist. (Not the guy who waited 19 days to deliver the biopsy results.)

I was relieved, of course, to hear a week later that all was fine.

Presto! Back to the ordinary life for which I am so grateful, renewed in my efforts to live well, be kind, and savor every fleeting day. 

And quit grousing about getting old! 


Posts about earlier cancer experience are here. 


The Blue Pool on Oregon's McKenzie River is like looking into the pure eye of nature,
affirming, once again, how great it is to have the gift of life.


Sunday, February 14, 2016

Back from cancer's brink - 10 lessons learned

Number Five on the lessons-learned list: food is the best medicine.  But it can also be poison. I knew this, but the lesson was reinforced in recent weeks. Above are ingredients for a delicious spring avocado, nectarine salad. 

Lesson 1-  We suffer in common

Having cancer—or any deadly disease—sucks energy and spirit and casts doubt on the secret belief that you're special; you're not going to get a killer diseases. You're going to be fine forever. You're not going to die. Of course, you know you'll die. But death is an abstraction. Even as you age, dying seems, somehow, distant.

So when a dread diagnosis arrives, the dreamy delusion that somehow, you'll be taken out in healthy old age by a lightning strike, or pass quietly as you sleep, dissolves. Or the belief that you'll be overcome by a sudden realization at 100 or so, that you don't want to live anymore, that you'll slide, smiling, into a garden strewn with rose petals with goldfinches feasting on your nearby chard, as they do, whether you're breathing or not.

Denial is powerful, but is eventually trumped by reality. My month-long episode with way-too-real melanoma, which was diagnosed as "invasive" and "metastatic", catapulted me into the Cancer Club.

Although I admit, I was in denial the whole time. A month isn't long enough to process that diagnosis. Processed or not, I had to deal with it immediately. Set up an appointment with a surgeon. Have a chest X-ray and blood tests.  Have surgery.

Then wait. Wait for biopsy results. From the time I learned I had melanoma until I accidentally got my biopsy results a few days early, I didn't know whether I'd be delivered from evil or macerated in cancer treatment machinery and spit out the other end in a cremation urn. It was a a month of living dangerously, but not in an adventurous way.

The biopsy results were in my favor. I don't need to fill a cremation urn quite yet. Whew.

But whilst thinking such thoughts, and sharing them here, I heard from cancer survivors, or those currently raging against it. I was humbled and touched by kindness, compassion, advice, wisdom, encouragement, and so on.

  •  A stranger sent me a link to the video that was shown at his wife's funeral; she'd died of melanoma.
  •  A woman with advanced breast cancer shared her travails as a single woman without resources or an advocate, and who believes she's at a serious disadvantage in getting the best care. 
  • Another breast cancer warrior is augmenting conventional treatments with healing foods, fungi, and herbs, and I have high hopes the combination will result in many more years for her.

So many stories. So much angst. So much ambivalence about the so-called blessings of living in the cancer danger zone. Some patients and survivors say they're grateful for their cancer "journey" because of all the good people they met along the way, and the life lessons learned.

Some things I'd rather learn by other means.

Lesson 2 - Suffering doesn't make us special; we can help one another

Note to self: Who are you to complain? So you had a helluva scare, but think of all the people who wage cancer "battles" for years and endure terrible treatments and don't even make it. And even if they do, there are continuing treatments and hair loss and pain and then the tests to see if the treatments worked and the waiting. Oh, the waiting.

During the worst of my month-long ordeal, I was an insignificant speck of fearfulness afloat in a sea of suffering, which can't really be quantified. Was mine worse than yours? It doesn't matter. People in crisis get self-centered, thinking they're alone, but they're not. Let's cast one another rope and hope, OK? And if there's somebody who's in no condition to reach out, let's make sure plenty of ropes are cast into his or her life. During a crisis, each act of compassion, caring and kindness matters. 

Lesson 3 - People who have had cancer never trust that it won't come back. 

Me included. Technically, my bout with melanoma ended when the after-surgery biopsy results came back benign. I just saw on Facebook a couple survivors rejoicing that their recent scans  are clean, as they have for at least 10 years. I'll be having dermatologist check ups every three months until—when? Once a member of the Cancer Club, always a member. A seed of vulnerability has been planted in my brain. It's not a seed whose growth I wish to fertilize. 

Lesson 4 - Life is short and time is passing too quickly to waste on holding grudges, being petty, picking fights, talking trash, or taking any person or any thing for granted. Be nice. Love. Figure out what you want to do or to be, and make it happen. It's never too late until.....

Lesson 5 - Luck cannot be overestimated.

I am deeply grateful for the little black spot under a toenail that a couple years ago propelled me to a dermatologist. It turned out to be nothing, but he found a basal cell carcinoma. When I returned to get the stitches removed from the biopsy, he suggested I see him in a year. That was how, that in December 2014, I made a dermatology appointment for December 2015.

The year flew. Then in early fall 2015, something on my lower right flank (lower side back) started itching. I couldn't see it, but looking with a mirror, I saw a tiny pinkish thing. Pinkish. Tiny.

Note: During scary Internet diving after melanoma horror entered my life, I discovered that itching, or pain, can be danger signs for melanoma, as can almost any change in an existing mole, or the appearance of a new one. 

But with my little pink spot, alarms did not ring.  images of typical melanomas.

If I'd waited, the harmless-looking but devious spot would have eventually drilled down far enough for melanoma cells to be whisked off to the nearest lymph nodes and then......

I got lucky. The main luck being that I kept my routine check-up with the dermatologist.

Lesson 6 - You can make your own luck with prevention. If you don't, you're an idiot.

I know this because I'm an idiot. I KNOW that preventive screenings are imperative; I wrote about them for years during my copywriting career, which included healthcare clients.

But I have not been religious about getting my chest units squeezed or my rear end reamed.

I got lucky with the early melanoma diagnosis, but also with a first-time colonoscopy about 10 years ago, during which a precancerous lesion was removed. I'm an idiot right now because I'm overdue for a colonoscopy and also a mammogram. But I'm on it! Appointments have been made.

Part of the apprehension about screenings is that "something" will be found. I know because of my own illogical fears. But my gratitude about having melanoma diagnosed before it spread is deep, and I'm committed to being a grown up. I will have screenings from now on, and schedule them in advance so I can't escape. How about you?

Is this what happens when you turn 70? No. This is what happens when you're born. Routine medical care, according to requirements of age, is a privilege and, we hope, a right.

Lesson 7 - Your primary care relationship can be your lifeline.

When I was in serious anguish about biopsy results following surgery, I happened to stop by the small local clinic, where I'd decided to sign on as a patient. When facing a killer illness, you need a medical insider in your corner, someone with access to your test results and who will go to bat for you to get the best specialists or whatever you need. Someone you know and trust. Someone who gives a damn. As if to underscore this idea, here's what happened when I went to the clinic. Also during that visit, I met my future primary care provider.

Lesson 8 - You need an advocate.

A friend who advocated for her husband during nearly five years of his cancer-fighting marathon described herself as a bulldog. She was not letting go of whatever control a patient, or a patient's  advocate, can have. When you're dealing with a complex disease that's trying to kill you, you must have some degree of trust in the medical world, but don't forfeit your patient rights, your right to know what' going on. Insist on being informed ASAP after test results are available. Every medical office has a patient bill of rights. Hold em to it. YOU are the boss of your health information.

Lesson 9 - Food can help prevent cancer and other diseases, and also cure them. 

I took a crash course in the food/cancer topic during the past month, and my interest is keen and ongoing. Dr. Mike credits food, fungi, acupuncture, exercise and other alternative approaches to defeating his stage 4 esophageal cancer. He also had surgery, chemotherapy, and radiation treatments.

I also learned that there's a vast network of people who embrace food and natural remedies to prevent and  treat disease, cancer included. A terrible tension exists between them and some in the medical establishment; But there are also cross-overs from the world of modern medicine into natural healing. It's fascinating, intense, and food for thought.

Case in point:  A 15-minute TED talk by a cancer researcher that Dr. Mike recommends. Spoiler: Studies have shown that "super foods" have as much or more capacity to shrink tumors than does chemotherapy. Check out the graphs in the following. Do you have 15 minutes?

Can We Eat to Starve Cancer - TED talk by William Li, 

William Li presents a new way to think about treating cancer and other diseases: anti-angiogenesis, preventing the growth of blood vessels that feed a tumor. The crucial first (and best) step: Eating cancer-fighting foods that cut off the supply lines and beat cancer at its own game.

Cancer researcher
William Li heads the Angiogenesis Foundation, a nonprofit that is re-conceptualizing global disease fighting. Full bio
What's the big-time take-away?

Lesson 10- Don't eat crap food. 

Turn away from refined carbs - sugar, especially refined grains, bread, pasta, processed foods. Eat whole foods, and heed the 11th commandment: get your five to seven servings of fruits and veggies every single day. Here's a list of top cancer-fighting, cancer-prevention foods. But I think Dr. Li's list is better. Gotta watch the TED talk. 

My daily uptake of antioxidants has spiked, and I'm also dosing with turmeric and local mushrooms cooked into a tincture by the owner of the local herb shop.  He has an entire wall filled with his New Moon extracts. (Note to self: write a post about this, and the elderly mushroom guru. And Mike Amaranthus, who credits fungi and cancer-fighting foods with the fact he's alive and healthy, loving every day.) 


I'm going to quit for now. A month in cancer-limbo-hell slammed me, but I'm coming out of the fear-induced fog with gratitude and renewed commitment to healthy eating and making my own luck.


Don't forget to watch this 15-minute TED talk. Do it!!! Please.


Earlier Cancer Club Posts
Welcome to the Cancer Club - learning the terrible truth
Beautifully Benign! But how about more timely results? 


Sunday, January 31, 2016

Blessed relief. Beautifully BENIGN! But can we have more timely test results?


Benign!  Even though I had a dire diagnosis of metastatic melanoma, with a second opinion correcting to invasive melanoma, my surgeon predicted my chances of coming out clean were between 85 and 90 percent.  Thank you. But the time between hearing the scary diagnosis and learning the pathology results from surgery totaled 30 agonizing days. Worst days of my life. The anxiety ended when I accidentally learned the results.
Our latest refrigerator decoration won't be coming down anytime soon. Benign pathology results!


Accidentally? Here's what happened.

Due to upheaval on almost every level of our lives, PK and I discussed changes, including my switching primary care providers. I decided on moving to the small Rogue River Family Practice Clinic just a mile away, where we are friends with two of the three doctors. This is a small town, and the clinic is a small practice. The community knows and mostly loves and respects the physicians and two physician assistants, and the office staff, some who've put in 30 years and know patients by name. I went there Friday morning to become a patient.

As I was filling out paper work, one of the clinic doctors, Brian Mateja, who happens to be PK's doc and a personal friend, saw me and said, "I was going to call you this afternoon to see if you got your test results yet."

He reads my blog, so he knew about our little drama and me bleeding from the eyes.

"Do you have the results?" he asked.
NO!
"Would you like to see them?"
YES!

Let's go. My heart thumped as I followed him to his office. I gulped air as he fired up his computer and logged into the network that contains medical test results. Finally. I'm where I've need to be; I will soon know whether I'm going to be a cancer patient or can go on my merry way as a healthy person. I'm trying to remain calm. Life and death shit here. I'm going to know in a second or two.

Soon I was peering tearfully at his computer as words of grace appeared on the screen: BENIGN for two lymph nodes,  BENIGN for two more lymph nodes, and no evidence of cancer for the excision site and margins.

The black boulder that had been poised on a cliff above me rolled away, and my spirit lifted skyward with an explosion of gratitude and relief.

However. At the same time, I learned that the results had been available since Jan. 27, three days earlier!  Despite promises I would be contacted about resultsI did not receive a call from the surgeon's office.

Dr. Mateja spared PK and me two and a half more days of spirit-crushing anxiety. He saved us from the heavy work of preparing to ask questions about treatment options, survival odds, and oncologists with melanoma expertise. His  great gift of peace of mind required about five minutes. He was going to call me, but I just happened to be there. He's not even my doctor. He's my friend.

Can't doctors be our friends? Our advocates? Of course they can, and many are. I'm not sure what happens, though, with doctors who neglect their patients' mental and emotional health. I am sure my surgeon did a great and thorough job on cutting me up, and with good results. I am grateful for his expertise, judgement, and the confidence and skill his job requires.

But did he care about me personally? Probably not. He doesn't know me, and I don't know him. And I guess, with surgeons, it doesn't matter, since you see them three times: consult, surgery, and post op appointment. What's the sense of establishing a relationship?

But still. I think all medical care providers need to respect that patients are often anxious to the max, to the point of nausea, to blowing up the blood pressure gauge, especially regarding cancer test results and staging. Sharing test results in a timely manner should be a top priority in medical offices. Not necessarily for routine test results, but certainly those upon which a patient's life may turn.

Medical office managers might consider providing a form to patients listing options about how they prefer to learn critical test results, and then making sure somebody has responsibility for contacting patients as a part of their job. I know it's complicated. Doctors don't have time; office staff lacks credentials to answer medical questions etc. etc. But there must be a solution.

I could have been informed via a simple text message or email that my results were good. I could have indicated that getting text results that way, good or bad, would be OK. I wish someone would have asked.

The point: Knowing is better than not knowing. It either provides relief or gives patients a starting point for life's next chapter.

At my post-op appointment Monday. I will thank the surgeon, but also inquire about the practice's protocol for informing patients about their test results. It isn't his job to worry about that, probably, so I may ask to talk with the office manager and/or practice administrator in an attempt go to bat for all patients whose lives get put on hold and whose brains go ballistic while awaiting potentially life-threatening results. Surely there's a way to handle this.

I will also be talking with the dermatology office, where the wait time between my biopsy and when I learned I had melanoma was 19 days. At least I wasn't stewing in stomach acid during that wait because I had no reason to think that melanoma cells were working on my back. Maybe there were excellent reasons it took so long to be notified. But maybe not.


Since publishing the first blog about the Cancer Club, I've been contacted by well over 100 people, including two local women who survived stage 4 metastatic melanoma.

The first has been out of the woods for 12 years. Unlike some melanomas, hers was treatable with chemotherapy, which continued for one year. She also had all lymph nodes removed from the groin of the affected leg. She still has check-ups every six months.

The other woman had the same diagnosis, but her disease was not treatable by currently available means. She wrote in a Facebook comment:
 I was diagnosed with full blown Stage IV melanoma in December 2012. There was nothing they could do for me in Medford. I was accepted into the IL-2 research program in Portland and we beat it - AND YOU WILL TOO. Call me, anytime, night or day.
The generous spirit of that last comment, call me anytime, night or day, and over-arching optimism, hopefulness and courage that  permeated the FB and blog comments, phone calls, private messages, mailed cards, on-the-street hugs and other communications were inspiring, heartwarming, and strengthening. Thank you all!!

Still in the Club

The Cancer Club is huge, a fellowship of support, compassion, shared experience and practical advice. The melanoma I was diagnosed with may be gone, but I'm still in the club. I'll be having dermatology exams every three months for awhile, and will always be on the alert for skin changes and other symptoms. I will never be the same.

If ever I have another medical test, the results of which could change my life, I will do as one friend advised regarding getting timely results. Eileen Amaranthus, whose husband, Michael Amaranthus is cancer free six years after a diagnosis of stage 4 esophageal cancer, learned how to be a bull-dog advocate:
I kept a journal and wouldn't leave the appointment, any appointment, without running through the following questions: who, what, where, WHEN, WHY, how long, what's the next step, what are other options, what aren't we asking? I'd take notes. It helped to be informed so you can ask specific questions. We requested a specific radiologist. We asked the oncologist's opinion about treatment options we'd heard about, and also, "If this was your husband, what would you do?" I always asked the oncologist why she chose the treatments she did. 
ASAP RESULTS 
As for getting timely test results, I was most definitely the squeaky wheel. I initially called every day. Now I do not leave the office until they tell who is reading the lab, who will get back to us, and how do I reach that person? My first point of follow-up is with Michael's primary care doctor. When results come to the primary care office, they are  faxed to us. (If results were slow) I would call their office and the lab until someone had an answer. 
    I hope to tell Michael's story soon. It's an incredible tale of willpower, courage, intelligence, intention, discipline, doggedness, and getting the best of allopathic (traditional) and alternative medicine. It is a grand example of taking control of your own body and treatment in many respects, but also surrendering aspects of care that even the smartest individuals must leave to others. We can all learn from him, cancer or not.

    Earlier Cancer Club Posts
    Welcome the the Cancer Club - learning the terrible truth

Sunday, January 24, 2016

Welcome to the Cancer Club

When a summons from the Cancer Club invades your emotional inbox, you avert your eyes, bow your head, and begin whatever passes for prayer in your world; Not me. Not now. Please.

When the phone call comes that confirms you've been inducted into the club against your will, you'll do just about anything to resign. Get me outta here! I want to go on with my life. I have PLANS, dammit!

But a cancer diagnosis isn't negotiable. If you have it, you deal with it. You stick it out. Not just your tongue and your attitude, but your perseverance. Your grit. Your spirit. I've seen too many friends die from cancer, and I am not saying they died because they didn't have enough gumption to fight it. They did.

Oh dear, my friends who died from cancer fought like crazy, fearsome spirited battles against their invisible and ultimately, invincible, enemy. Even determined troops of friends, families, and medical experts couldn't swing their battles. Dying from cancer isn't the victim's fault. It's not anybody's fault. It's just part of life, the dying part. You gotta go somehow, some way. You don't get to choose. (Except in Oregon, and some other states, you can choose to die earlier than the disease, whatever it is, dictates.)

I've also known many more who have beaten the disease, chief among them a Spartan cancer warrior  named Mike Amaranthus, who was diagnosed in the prime of his adult life with stage 4 esophageal cancer. He worked incredibly hard for his victory, and I hope to tell his story no matter what happens with me. (He's six years out from diagnosis, disease-free. He does something to fight cancer every three hours. Would you like to know what? Me too.)

Me? I am early in this game, a new club member. I'm not sure I'll have to stay and test myself against such a formidable invader. I hope not. I hope I can scamper on with my Ordinary (wonderful) Life and file this episode along with other bullets dodged, lessons learned, disasters avoided.

Here's a quick synopsis. And by the way, please don't refer to my experience as a journey. I love to travel to foreign places, but not this one.

December 10, 2015: routine annual dermatology exam. Small reddish raised mole-like spot found on lower right flank. I'd noticed it because it itched. Had it a few months, maybe longer. Shaved off for biopsy. Doctor states it appears to be a basal cell carcinoma. No sweat. Had  a couple removed previously. (Melanoma lesion arose from a a Spitz nevus. Rare in adults.)
December 11, 2015: I forget about the biopsy. The "lesion" looked nothing like melanoma images, and I was not worried. The doc said someone would call me in a few days with the biopsy results. A couple weeks later, I made a mental note that no one had called, so assumed everything must be fine. We continued with plans to help out with grandchildren's holiday child care during Christmas break in Reno, a 5-6 hour drive from our home in Southern Oregon. 
December 29, 2016: Beautiful bright blue sky day in Reno, out and about with the grandchildren. No reason to expect a lightning bolt. My cell phone barks. It's the dermatologist. In a rambling, almost apologetic fashion, he informs me, 19 days after my biopsy, that I have melanoma. He can't mean me, can he? Is he looking at someone else's pathology report? There must be a mistake.
He goes on about best and worst case scenarios: WORST -  the skin lesion that was biopsied could be a metastasis from somewhere else in my body. Metastasis is a hideous word. I have melanoma, and it may have already spread? Can you give me a break here, please?  BEST - The lesion was classified T1, which means it was small and found early. The surgeon, during a consult on January 6, said there's an 85 to 90 percent chance that the excision margins will be clean, as will sentinel lymph nodes that will be biopsied at the same time as surgery. If everything is cancer-free, I'm done. Except for skin exams every three months for a long time. (That metastasis thing weighs heavy despite the surgeon's favorable guess at odds.)
January 19, 2016: Surgery day, which begins in the nuclear medicine lab at the Rogue Regional Medical Center in Medford, OR, where I'm injected at the site of the melanoma lesion with four doses of radioactive dye in preparation for a sentinel node biopsy. If it wasn't me laying there scoping out all the technology employed on my behalf, it would have been interesting.
Isn't it just weird that I documented this? The bright light in the lefthand image is the melanoma site where a radiologist injected four doses of radioactive dye. Soon, the techs (and me, immobilized but comfortable beneath a giant scanner) can see the dye "draining" up into lymph nodes in my right armpit and breast. The sentinel nodes are those that collect the most radioactive material, and are the most likely places that the melanoma may have spread. The brightest two are taken during surgery later in the day. 
I watched the screens as lymph nodes in my armpit basin lit up. The techs seemed pleased that the images were clear, providing a good map for the surgeon to take the brightest nodes, those to which the melanoma may have "drained" malevolent kill-her cells.
Later, after surgery, the surgeon met with PK to say that things had gone well, there was "nothing obvious" to report, but that I should definitely not travel to South America the next week. (As planned Jan. 27-Feb.23. Plans be damned.)
January 24, 2016: I enjoyed a leisurely walk along the river this morning with seven girlfriends. Most of us have been friends for 40 years, or more. But just two know about the "problem" and are sworn to secrecy. Do I think if I don't tell people, it isn't really happening?

Up until this moment, providing I gather the courage to press PUBLISH, only family members and a few close friends, and some random people, know something bad may be lurking.

I understand now why people who get a grim diagnosis need time and space to process before they share what's going on. They don't want to talk about it because they have not yet accepted that it's real, and they are already consumed emotionally and don't want to dig deeper into the rabbit hole by having people ask them questions and look upon them with pity, or define them by the disease.

Not knowing the pathology results from surgery and lymph node biopsies is hell. WHY does it take so long!?

If the results are positive,  I will be a certified member of the Cancer Club. If negative, then life goes on, but not with the same spirit of invulnerability that I've always possessed. What was I thinking? Pretty sure I was going to live to 100, even if reluctantly.

It has been four business days and six actual days since surgery. We should know this coming week what lies in our immediate future. When I say "our" I'm talking about PK and me as a unit. He's  been incredibly supportive and suffers as much anxiety about this as I do. It's not quite so lonely having him with me. It's like we're holding hands beneath a cliff where a huge black rock is balanced on the edge. Either it will roll the other direction or crush us. Unless we somehow leap out of the way in the nick of time. That's hope for ya.

PK is more private than I am, and before I press "publish" I've made sure he's OK with this.

I guess I'm ready to say to the wonderful people who continue to read my blog, and to many dear friends, that I've been diagnosed with effing cancer, and that you may be hearing more about it.

Waiting for medical test results feels like a log has lodged sideways in your head, and an anvil is pressing on your neck, and your heart is trying to jam its way through your chest, and you think you're about to blow a gasket because you just want to know, dammit. 

I know one thing for sure, though. I'm not alone. And neither are you.


UPDATE: