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.
"Would you like to see them?"

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. 
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

Wednesday, January 27, 2016

It was a beautiful day in the Cancer Club's Limbo Lounge

                   My friend and neighbor Cecelia Schefstrom led me on a challenging hike to find an old mine
                   yesterday, the day PK and I would have been en route to Ecuador had we not been derailed by
                   my evil melanoma diagnosis. I have a hard time writing or saying that word.
                   We did great, I think, for women in our early 70s. Cel is amazing. She can read the forest, the
                    ridges, and the old skid rows from early logging. She spots cougar scat, game trails and, like
                   her mother leans, into the slopes with love of the land and a deep sense of place.
                   She's never afraid of getting lost. I may be able to hike faster, but I follow blindly with gratitude.  
This old mine shaft was the object of our search. It was a lovely day, but everything takes on "meaning" when one is installed in the Cancer Club's Limbo Lounge. Am I headed toward the evil black hole symbolized by this old mine shaft? Not that I'm aware of.

If anyone in the medical world knows the pathological results of my January 19 melanoma surgery, they have not shared the information, consigning me to the Lounge, where "not knowing" casts a pall at unexpected moments throughout the day (and the night!!) and anxiety gnaws on the brain. I'm almost getting used to the lounge since l've been in it since the initial diagnosis Dec. 29, 2015, which took 19 days to get to me!

Added to that, I'm approaching two weeks out from surgery where lymph nodes were biopsied, for God's sake. Isn't that  too long to wait to to learn whether you'll hop right back into your merry little ordinary life, or if you'll spend the next year or two in and out of treatment and, undoubtedly, a lot more long days and nights in the Limbo Lounge having your brain devoured by fear monsters? Is this normal? Does all cancer (and other) patients stop the clock awaiting test results?

Do all poor suckers who get punched by cancer also have to suffer from inattention from medical people? I spent many years of my professional life writing about compassionate care on behalf of medical clients. Now that I'm a patient, and not seeing any hint of compassion regarding timely results, or even communication about when to expect them, I'm thinking I should have talked with patients who weren't hand picked. But then I'd be working for news organizations, not public relations departments.

An earlier post explains about the melanoma and my induction into the Cancer Club.
Over the past tortuous month, I've decided not to wait for life to happen, but to make it happen. Inertia and depression are real and oppressive, but who would choose sitting around feeling sad all the time. Not me. Thus the past few days have been filled with friends, hikes, and so on. I'm past, I hope, the most traumatic part of this new reality, and ready to move on. No matter what happens. Both my middle fingers are raised in the direction of disease, and "bring it on" is on my lips. I can't choose what already exists. But I can choose to make the most of every day.

I met my longtime friend Cecilia Schefstrom at her place a mile away near the top of our shared country road, for our hike.  Cel, as she's called, was born there and, except for a few brief vacations, has never left. She is rooted to her tiny homemade octagonal home surrounded by typical and pristine southern Oregon woodlands. She's been wanting for years to lead me to an old mine in the hills above us, and today was the day.

Trails don't exist and the slope is challenging.
We set out with our walking sticks and her two dogs  at 10:30 a.m. to bushwhack our way straight up steep slopes to locate the gold mine that had  been forged in the late 1800s, early 1900s. Our gulch has a rich mining history, and far easier hikes deliver the curious to old shafts and even a gravity mill. Our road is named after a miner who messed around here before relocating to Arizona.  Now residents along our road mine the soil for nutrients to grow marijuana, although many also have vegetable gardens and raise chickens and goats and horses. Why horses? Beats me.
Cel tells me that this once-grand wood cook stove alerts us that we are 
not too far from the elusive mine, which she's seen only twice before and has not
been able to reocate on subsequent hikes.

This old wrought iron piece will last far longer than any of us.
Me at the entrance to the hidden mine. I'm smiling, but I'm scared of that sucker. Cel entered the shaft, but for lack of light, she stopped a few feet in. I  was put off by the symbolism. Plus it's a 100+-year-old mine shaft. I'm not going in there. I'm not nearly as brave as Cel is. Plus I need to save my courage for what may be coming.

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.


Monday, January 11, 2016

Quick and Easy Low-carb Pizza

It makes me hungry to look at this. It required about 10 minutes to assemble and another 15 to bake.
Here's the key: Low-carb wraps or tortillas. These are available at most grocery stores in small-town Oregon, and they, or similar products, are likely  available anywhere in the USA and Canada. If you have a bit more time and an adventurous spirit, try cauliflower pizza crust. Unbelievably good! Zucchini pizza crust is also great, but requires more ingredients and a bit more prep time. Don Pancho ingredients include, in this order: water, whole wheat flour, oat fiber, wheat gluten, safflower oil, wheat bran, oat syrup solids, baking powder, and salts. No trans fat. 8 grams net carbs and 7 grams dietary fiber, 110 calories.

               My ancient pizza pan with holes makes all the difference  
          in producing a crispy crust. You can buy something similar here.

There is no set recipe for this quick meal. Assemble whatever ingredients you have on hand and get started. Preheat the oven to 375 degrees. Here's what I usually use:
  • marinara sauce, reduced for a thicker spread
  • pesto 
  • chopped onions
  • chopped peppers
  • whatever leftover meat is on hand, usually no-nitrates cooked sausage, seasoned cooked hamburger, chicken, turkey
  • kale, torn into pieces and microwaved on high until wilted, about 1 minute
  • shredded Parmesan and/or other cheeses
Quality marina or pizza sauce is important.  This happens to be homemade from
last summer's tomatoes, but jarred commercial sauces are also good and can be
doctored for more flavor.

Spread pesto first, if using.

Add kale, spinach, or other cooked veggies. If using spinach
be sure to drain it well, squeezing out excess water.

Load it up with raw chopped veggies and meats. This one is topped with chopped raw onions and peppers, cooked kale, a bit of leftover sausage and turkey. I wait until after the pizza has been in the oven for about 10 minutes before applying cheese. Bake with cheese on top for another 5 - 7 minutes. The cheese should be well melted and the crust edges browned. Parmesan is always good, but I also use pre-grated cheeses straight out of the bag.
One pizza serves two along with a big green salad. Give it a try!

Cauliflower Crust Pizza (gotta try to believe. BUT do not use a perforated pan.)
Zucchini Crust for Pizza

Saturday, January 2, 2016

Who Wants to be 100?

Note to email readers: Things look better if you click on the blog title to get to the website.

January 2, 2016
My mom would have turned 100 on January 1, and I miss her. I always thought she'd make it to the century mark, but she died in early September 2013, almost exactly six months from when I wrote this post in March of that year, after she'd relocated to a foster care home.  She entered hospice care soon thereafter. Stumbling upon it today brought back bittersweet memories of her final months, and even though it is old news.....maybe you can relate. Especially if you have a parent or two in their 80s or 90s. Or, if you are personally staring down those ages, and, given how we know that time runs at a hot pace, those years are not that far away.

March 2013
This week I'm moving my mom from assisted living to adult foster care. She'll get more one-on-one attention—exactly what she needs. She hates to be alone, and believe me, regardless of a manic and motivated activity director and kind caregivers in a facility occupied by 40-some residents, she has been most often alone. If not in her apartment, which she avoids, then sitting in the lobby or dining area, or navigating the long hallways in her wheelchair. Most evenings, I'm told, she yells for help, when all she really wants is company.

I'm glad that she knows how to ask for what she wants. No one wants to be lonely. No one deserves it. The loneliness of our elders is described in a heartbreaking song by John Prine. If you haven't heard it, please listen. I cry every single time, because I have seen those "ancient hollow eyes."

Since 2008 when PK and I moved her to Oregon from Minnesota, my mom has been a large part of my ordinary life,  and I visit four or five times a week. Still, I feel terribly guilty that she's yelling for help while I'm home just a mile away. Children of aging parents might relate. You love them, but you have a life.
Waiting. Endless waiting. She's waiting for me, mostly, as I am her only nearby family. But also for something to break the monotony. She can't read, watch TV, do the needlework she loved most of her life, play cards, or chat with other residents Her isolation, due to losing her sight and hearing is heartbreaking and haunts me. (It haunts me still, in 2016)
How has she lived so long? As doctors often remark, genes have a lot to do with longevity. Although her father died of appendicitis during kitchen-table surgery in 1920, her mother prevailed until age 98, even surviving surgery for a blocked colon at age 96. Her name was Dorothea, and what a trooper. I don't think anybody was more surprised at getting old. Gardner, painter, ceramicist, mother, wife, fisherwoman, clam digger, cook, poker player, thigh slapper, life lover. When she died at 98, it was a miserable process that began with a stroke that made it impossible for her to swallow. Let's not go there.

I'm approaching 70, inching closer to 90 as the previous decades recede into photos and memories. Amongst assisted living residents, I see surprise, sorrow, and resolve about the aging spiral. These people are old, but they're still present and wondering what the hell happened. They too were dancers, singers, artists, soldiers, cooks, circus performers, parents, grandparents, writers, investors, academics, recyclers, thinkers, lovers. They were lovers. Now they're survivors, some daring to peek around the corner at death and others refusing to accept reality. Some are diminished by dementia, which is, in a way, a protection. Who wants to be fully aware of the losses? Dementia blunts the hard truths and the sharp edges of hurt and need.

Back to my mom, LaVone. She has a greedy sweet tooth, and always has. But eating an outlandish amount of sugar hasn't drilled any holes in her life boat. So much for the sugar-free theory of longevity. In fact, except for being nearly blind, almost deaf, confined to a wheelchair, and suffering from extreme osteoporosis, she is the picture of health. She takes one mild prescription drug, low-dose aspirin and not much else. When caregivers attempt to give her prescribed anti-anxiety pills on nights that she calls out for help, she tosses them over her shoulder! Gotta love that spirit.

A year ago her young doc pronounced her sound, and noted that "her blood work looks better than mine." Ten years ago she had a panic attack and ended up having a cardiac workup. The cardiologist said she had the "heart of a 26-year-old." As of New Years Eve 2013, when she fell and spent five hours in the ER and had a battery of tests, all of which cost $5,000, (!!!!), everything still looks good.

Except, of course, for the vision, hearing, and mobility, which constitute quality of life. But vision, hearing, and mobility are unnecessary, apparently, for living to 100+, which I predict she will achieve. Dementia? She's been diagnosed as "mild."

She is 98 years and 3 months old. What's with the months? She told me around the time she turned 90 that the ninth decade is like the first, except rather than reaching achievement milestones, she'll be in reverse. Losing ground rather than gaining.

Well, she didn't say "achievement milestones." But her meaning was clear, and she was correct. We all know this happens, but seeing a parent age at warp speed is horrible. Well, hello. Seeing your very own self age at what seems to be warp speed is also a delicate topic. Isn't it?
My sister, Monette, on the right, with her son Micheal, and daughter, Lisa. That's
me with the lavender shirt. My father and mother share a headstone at Fort Snelling,
a military cemetery in Minneapolis.  We visited their graves in June 2015.

Looking back at the photos and words about my mom's life in Oregon, which she began at age 92, I see the bigger picture and remember all the good times she had, especially the first few years. After age 96, not so much. Several months before she died, she told me she was "ready to go, any time."
I have not written yet about my wonderful father, Floyd Strube, who died at 93, from kidney failure? We're not sure. One day he was on hospice care. The next day, he was gone. My mother always thought they killed him with morphine at the nursing home where he spent his final weeks. The last time I saw him, on a visit to Minnesota from Oregon, he complained of severe shoulder pain. He couldn't walk. He could barely chew food, as his dental appliances no longer fit. But one of the last things I heard him say? I want to go home. He did go home. If there's a heaven, he's there.

Other posts about time passing:
Time is too long for those who wait....
Happier times at age 93
The end of life...
But let's not forget about Pauline! Is 90 the new 70?