Contemplating crabgrass plus Cancer Club updates

That's me and my shadow capturing crabgrass before it runs amok in the garden. Rodale lists it as number one

on the list of worst garden weeds. 

I spent a couple hours this afternoon wrenching young crabgrass from the garden. I do this every year; dig clumps with a potato fork then comb through, seeking white tendrils snaking through the soil. I shake dirt back into the garden, dump the tendrils and grass into a bucket, and toss it into the orchard, far from the garden.  Over the years, the crabgrass invasions have become fewer and less dense. I'm making headway.

Combing the clumps with my  gloved hands to get every last tendril is daydreamy repetitive work, however, and the mind wanders. Mine wandered in the wrong direction, perhaps because I'm having a colonoscopy tomorrow, everyone's favorite cancer prevention procedure, right?

And that set me thinking, yet again, about the melanoma terrors I endured for 30 days from late December 2015 to late January 2016.

I thought about how the itty bitty pink mole required a five-inch incision plus a couple smaller cuts to remove lymph nodes for biopsies. About how PK and I put our lives on hold awaiting the surgery and biopsy results. About how agonizing it all was. And now, how our lives can go on almost as if it didn't happen.

Even a tiny piece of crabgrass root can regenerate. I couldn't help but think of crabgrass today as garden cancer. I'm using the surgical approach to cure. We tried "chemotherapy" on it years ago to no avail. I learned tonight that "prevention" chemicals are now being sold to keep it in check. I'll stick with the manual labor and avoid applying chemicals.

After the melanoma terrors subsided, I scheduled a mammography, (Benign results were back in a couple days! Thanks, Asante.) a dental appointment, and tomorrow's colonoscopy. I hate the colonoscopy prep, which I am enduring as I write. The procedure itself isn't problematic, veiled, as it is, by unconsciousness. And when I wake up, I can eat!

I've had two previous colonoscopies. The first was about 10 years ago after my primary care provider talked me into it, and I am grateful that he did. A precancerous polyp was biopsied. If I hadn't agreed to the procedure, the polyp would have eventually developed into full-blown colon cancer, which is infamous for being asymptomatic until it is advanced.

Another was performed three years later with good results. Tomorrow, who knows? But if something evil lurks, it will be caught early.  And la-de-da.

Crabgrass was useful in leading me to put things in perspective and also do some follow-ups.......

Updates in case previous posts left you wondering:

A post about the agony of awaiting medical test results generated a noisy response from readers, mostly via Facebook comments. It is clear that my experience was not unique, and that tolerance for delayed test results is low.

Here's an excerpt from that post:

....I'm approaching two weeks out from surgery where lymph nodes were biopsied, for God's sake. Isn't two weeks too long to wait to learn whether you'll hop 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? ....Do all poor suckers who get punched by cancer also have to suffer inattention from medical people? 

An earlier post explains about the melanoma and my induction into the Cancer Club.

In a later post, I pledged to inquire with my medical providers, at least, why timely results were not delivered and why my requests were ignored. Post excerpt follows:

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.

When I saw my surgeon on a Monday, 10 days after surgery, he was pleased to tell me I was fine. I was pleased to tell him I already knew because a physician friend who read my blog offered to show me the online results on a Friday morning, sparing PK and me a miserable weekend of waiting. The results had been available to medical offices since Wednesday! Three days they could have called me!

The surgeon was great. Very apologetic. He said that contacting patients with negative (good) results can be done by an assistant, but that patients whose results are positive for disease either must wait until their post-op appointment with him, or he calls them personally. He had no idea that I'd called his office three times and stopped by in person once.

I asked to speak with the surgery practice's office manager. I gave her a copy of the Beautifully Benign post (link below.)  I told her that results from my surgery/biopsies had been available for three days, not including the weekend, and that at least one of the three people in her office that I'd spoken with could have called me. She was receptive and promised to have an office training to reinforce already established rules about tracking patient contacts (one of my calls was not listed). She seemed to be in complete agreement that the surgery practice could do a lot better in sharing patients' test results in a timely fashion. I hope she followed through.

As for the dermatology office that took 19 days to deliver my bad diagnosis, I waited until my 3-month appointment to talk with my doc in person. By requesting paperwork ahead of time, I knew for sure that he could have called me five office days before he actually did.

He explained that my diagnosis was difficult, and after a group of dermatologists reviewed the slides and agreed with the first diagnosis, it was sent to an outside lab for a second opinion, which required more time. That opinion was "invasive" melanoma rather than "metastatic." Super bad either way.

The dermatologist didn't provide a reason why for not contacting me during one of those five days, but I cut him some slack because it was during the holiday season.

Another spot was biopsied at my three-month visit in early March - I'll be seeing the dermatologist every three months for an undetermined time. The benign results were speedy, delivered by phone and mail within a week.

Maybe my frank talk made a difference? I can only hope.

Earlier Cancer Club Posts

Welcome to the Cancer Club - learning the terrible truth

It was a beautiful day in the Cancer Club's Limbo Lounge - making the best of waiting

Beautifully Benign! But how about more timely results?  Get with the program, medical offices.
Back from Cancer's Brink - lessons learned 

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 results, I 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
It was a beautiful day in the Cancer Club's Limbo Lounge - making the best of waiting

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.

William Li

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. 

 Among the potions made and sold in at the Herb Shop in Grants Pass OR. All of the fungi are harvested in the local wilds by a fungi guru, who happens to be an elderly woman. As a result of things learned, people consulted, and a general why- the-hell-not approach, I'm now dosing three times a day with turmeric and the Five Fungi of Health. As prevention. If it's good for Dr. Mike, it's good for me.

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

It was a beautiful day in the Cancer Club's Limbo Lounge - making the best of waiting

Beautifully Benign! But how about more timely results?