It occurred to me this morning that many bloggers, have somewhere stored, a Christmas blog they trot out each year to look at and revisit. Below is my attempt at this venerable tradition…
A NEWLY DIAGNOSED DIABETIC, breast cancer husband's observations mixed up with an alzheimer's son's musings
Sunday, December 26, 2021
Christmas Ruminations Across Breast Cancer, Alzheimer's, and Science Fiction!
Sunday, December 19, 2021
Encouragement (In Suffering, Pain, and Witnessing Both…) #19: Suggestions for Working for Holiday “Cheer”
Cute Santas don’t cut it. Sleighbells jingling do nothing to alleviate the grief. No matter how many Christmas cookies you eat or spins of the dreidel you do or candles you light at Kwanza or curses you fling at people around you who are ENJOYING the Winter Solstice…none of those things change the feeling of loss inside of you.
Because, with loss or disruption in your life due to cancer, it IS all about you…
There are web sites that offer specific steps to deal with cancer or Alzheimer’s during the holidays. I’ve made a sort of composite wisdom from these sites. I’m sure there are others, so just visit them or even make up new solutions with your family. You’re surviving so far, you have internal strength!
FIRST: PLANNING can help avoid holiday stress. Individuals who experience the most difficulty with the holiday season are those who have given little thought to the challenges they will encounter. Consider ahead of time what may be expected of you, both socially and emotionally.
Keep it simple: Make a list of what is most meaningful to you and prioritize. Some families even create new traditions at times like this!
Enjoy special moments: Work to focus on traditions that have been established, but make them new to include people as they are TODAY rather than on how cancer or Alzheimer’s has changed a holiday or special occasion.
Give yourself the gift of acceptance: Acceptance, not so much of the loss, but of the grief you are experiencing is one step in the healing process. Thinking about and remembering your loved one at this time or how things USED to be brings pain and sadness. Don’t fight it, but let those around you into your grief and share it. It’s OK to be sad at this time.
Communicate with success in mind: Alzheimer’s can diminish a person’s ability to communicate. Cancer can seem all consuming. Be calm and supportive if the person has trouble communicating. Avoid criticism. For example, “You should be thankful for the holidays you’ve had!” isn’t useful. Stay in the present and if you are dealing with someone with Alzheimer’s, be flexible, and don’t argue with them.
Embrace hope: Do something that gives you a break from worries, and renews your sense of hope and satisfaction with life. Watching a favorite movie together with friends is low stress and can be a peaceful joy. Let go of what you can.
Celebrate strengths: You’ve all grown stronger in spirit during this time. Give thanks for what you can during the holidays.
Remember that it’s not about how much or how little you spend: This season is about making memories and celebrating the blessed and happy times.
Resources: https://www.cancercare.org/publications/55-coping_with_cancer_during_the_holidays?gclid=CjwKCAiAh_GNBhAHEiwAjOh3ZCRFbEsc68RBsQvfi1mNduPtAOYnYRVYL9WxUE02YRM_kAM5-wy2mRoCz-UQAvD_BwE, https://blog.dana-farber.org/insight/2019/11/coping-with-the-holidays-when-you-have-cancer/, https://www.oncolink.org/support/coping-with-cancer/oncolink-holiday-survival-guide/coping-tips-for-the-holidays/surviving-and-thriving-during-the-holiday-season-tips-for-patients-caregivers, https://harrisonseniorliving.com/parsons/10-holiday-tips-for-alzheimers
Image: https://www.yournewfoundation.com/wp-content/uploads/2019/11/MAIN-IMAGE_Grieving-at-Christmas_Foundations-Counseling.jpg
Sunday, December 12, 2021
ENCORE #173! – Days That Changed Life As We Knew It…
Ten years ago, we were ten years younger.
Breast cancer was ten years in our future.
My wife was home schooling that day. I was in my science classroom. Melissa Kyle had a social studies room in the science circle and was across the hall and kitty corner to my right.
The sun was shining.
The birds were singing.
It was a stunning September day. More stunning than we expected.
The first hint that anything was wrong was when my wife called to say that Josh had come running up from the basement to say that a jet had crashed into the World Trade Center in New York.
What a naïve statement. That was all anyone knew. “A jet had crashed into the World Trade Center.” Those were the last innocent words of September 11, 2001. Everything changed after that and not one of us has remained untouched; not even my 14 month old grandson. He was born into a world that cringed every time an airplane went off course. He was born into a world where identities are checked, double-checked then checked again. He was born into a world where the nursery was locked, double-locked and then IDs of mother, child, parents, grandparents and everyone else was checked…because you never know.
I KNOW the world has changed again and again and again. “The day that will live in infamy…” changed everything. The assassination of JFK changed everything. The explosion of the first atomic bomb over Hiroshima changed everything. The first heart transplant changed everything. The harnessing of fire changed everything.
We live in a world where something is changing everything all the time.
One hundred and seventy days ago – March 26, 2011 – was the day that changed the life of my wife and the rest of our family. The confirmation of breast cancer forced us to confront something we had heard all about but rarely mattered to us in a deeply personal way.
Nine years and three-hundred and sixty-four days ago, was the day that changed the life of every American (and the families and friends of 372 foreign nationals from 56 different countries). Terrorism was part of the life of every Israeli, every inhabitant of India, every Spaniard, every Iraqui. We knew that, but it rarely mattered to us in a deeply personal way.
On this Patriot Day, I think about the things I know about that don’t matter to me and I will try to care; and I will definitely pray for those whose lives have collided with breast cancer and family loss – and Lupus, skin cancer, CP and autism. Those are the things I can think of.
What can you think of?
Sunday, December 5, 2021
BREAST CANCER RESEARCH RIGHT NOW! #80: Breast Cancer Cells Use ‘Tiny Tentacles’ To Suppress The Immune System!!!!
Every month, I’ll be highlighting breast cancer research that is going on RIGHT NOW! Harvested from different websites, journals and podcasts, I’ll translate them into understandable English and share them with you. Today: HOW do breast cancer cells overpower your usually fantastic immune system?
So, what would happen if someone took the battery out of your car?
Could you start it? Check the time? Turn on the air conditioner? Turn on the heat? Signal a turn? Auto-open the doors or roll down the windows?
So, what does that have to do with breast cancer, you ask?
Researchers at Brigham and Women’s Hospital and MIT have discovered that “cancer [cells] can disarm its would-be cellular attackers by extending out nanoscale tentacles that can reach into an immune cell and pull out its power pack. Slurping out the immune cell's mitochondria powers up the cancer cell and depletes the immune cell.”
And what exactly does that mean?
After reading the book above to my grandson (his dad HATES the book and his mom isn’t real excited about it…I found it utterly charming! The cranky grandma reminds me of me!), I realized it was an excellent metaphor to use to communicate this new theory of how cancer cells defeat our usually robust immune system.
Imagine a cancer cell as a particularly nasty octopus (only with way more than 8 arms!). It invades the body (and we’re not even sure how THAT happens yet – they say it’s mutations, but WHAT CAUSES THE MUTATIONS THAT CAUSE CANCER? [Subject for another post!] and when the cancerous cell runs smack into a white blood cell (which is designed to EAT cells that don’t belong in your body), it extends these nanofibers (that is, “tentacles”)) into the white blood cell (or WBC).
Then it turns on the vacuum cleaners. But it doesn’t just pull a Dracula and drink all the blood from those WBC protectors. Each tentacle targets a very special organ (technically, its one of the numerous “organelles” in an individual cell) in a WBC called a mitochondria.
(I first ran across these organelles when I read Madeleine L’Engle’s children’s novel, A WIND IN THE DOOR…). The simplest explanation is that they are the “batteries” that power a cell – they create the energy that runs a cell. How? They suck up the sugar you eat.
Plain and simple. From the sugars, they break them into pieces and the build the battery whose brand name is ATP (the company’s full name is Adenosine Tri Phosphate). Any cell in the body can use this ATP to power the cell.
The Cancer Octopus, or, to introduce a phrase, “Canctopus” uses its tentacles to vacuum up the WBCs mitochondria…
No mitochondria, no power, and the WBC stops running. The cancer cell wins and starts to grow, adding the stolen mitochondria to its own engine so that it can crank up to NASCAR racer speed.
So the problem is now for scientists to figure out how to either tie the Canctopus’ tentacles in knots, or to get a new breed of WBCs to do a reverse flow on the cancer cell and suck THEIR mitochondria out! Wouldn’t THAT surprise the cancer cell!
Alas, any such construction is a long, long way into the future. I’ll keep you posted…
Resources: https://www.sciencedaily.com/releases/2021/11/211118203652.htm
Image: https://images-na.ssl-images-amazon.com/images/I/51FwQe4KpBL._SX218_BO1,204,203,200_QL40_FMwebp_.jpg
Sunday, November 28, 2021
ENCORE #172! – “What Would Men Like Better: Bigger Boobs Or Nicer Hair?” vs “What if I don’t have either one?”
From the first moment my wife discovered she had breast cancer, there was a deafening silence from the men I know. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…That was four years ago – as time passed, people searching for answers stumbled across my blog and checked out what I had to say. The following entry appeared in August of 2011.
My wife was watching TV during one of her after-chemo days, when some daytime TV jabber show popped on. I don’t know which show it was (she didn’t say), but subject of discussion was the question above: What would men like better: bigger boobs or nicer hair?”
Now don’t get me wrong, television always goes for the spectacular, often ignoring truth or reality. I KNOW they were trying to get a rise out of the audience, increase ratings and sell Lexuses and tampons. I KNOW they think they’re being cute, creative, and provocative.
This time they ended up being hurtful and in bad taste – I mean “plumber’s butt crack with a bad case of gas” bad taste. And not just hurting feelings, attacking 1 in 8 women in the US (the number who will be diagnosed with breast cancer some time in their lives) or 2.5 MILLION women (who are breast cancer survivors.)
Not only that, it intentionally and maliciously attacks males as being too shallow to see anything beyond boobs and hair – when the simple fact is that most men DO see past boobs and hair.
It’s sadly humorous that were this show to target any other group of people, the American Civil Liberties Union and various other watchdog groups would be all over them.
But because it is attempting to make women with breast cancer who have had their breasts disfigured with lumpectomies; who have had one or both breasts removed by mastectomies; who have lost their hair through chemotherapy or radiation treatments – feel worse about themselves than they already do (and men to feel shallow and self-centered with absolutely no hope of changing) – the show is okey-dokey with its producers, advertisers and media executives (not to mention the show hosts and audience members).
My question then, is this: “What the heck kind of world do we live in?”
I guess the obvious answer is this: “One that doesn’t give a rodent’s waste end about viciously attacking vulnerable people.”
Harrumph…yeah, I’m struggling.
Have a nice day.
Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg
Sunday, November 21, 2021
RELATED MEDICAL ISSUES RIGHT NOW! #4: Breast Cancer and the Global Pandemic…
From the first moment I discovered my dad had been diagnosed with Alzheimer’s, it seemed like I was alone in this ugly place. Even ones who had loved ones suffering in this way; even though people TALKED about the disease, it felt for me like they did little more than mumble about the experience. Not one to shut up for any known reason, I added a section to this blog…
The immediate crisis that was Breast Cancer and Alzheimer’s have passed. There are, however ancillary issues like testing and treatments that may not be directly related to BC or A but intersect with them. Harvested from different websites, journals and podcasts, I’ll translate them into understandable English and share them with you. Today: “Impact of the COVID-19 Pandemic on Breast Cancer Mortality in the US”
We all know that the pandemic, through the twin incidence of overflowing hospitals and lockdowns, had an impact on the diagnosis and treatment of breast cancer.
But how MUCH of an impact? According to the article, “[We expect that there will be] 2487 excess breast cancer deaths…([an] increase over breast cancer deaths expected) by 2030 in the absence of the pandemic’s disruptions.”
Twenty-five hundred people doesn’t…seem…like a lot over a ten year period. Statistically, it’s a bit more than a half-percent increase (“0.52% (model range = 0.36%-0.56%”).
In the study, “Each model estimated the effect of COVID-19 disruptions on breast cancer deaths among all women aged 30 to 84 years between 2020 and 2030 in the United States.” The scenarios they looked at range from NO COVID19 all the way to “Hybrid delayed and skipped screening and delayed diagnosis and reduced chemotherapy treatment” – which is to say a person skipped BC screening because they just didn’t think it was safe to go out AND when they were screened, they delayed getting diagnosed AND once they were, they had a shorter than average chemotherapy treatment.
This seems like a bunch of unlikely events all piled on top of each other, but I can (and I imagine you can as well) imagine EXACTLY this scenario happening to someone we know or love.
Another study found that “Patients were more likely to be diagnosed with late-stage breast cancer [during relaxed mandates that opened various businesses and services]. Patients with lower income and medical comorbidities were disproportionately affected. These data raise significant concerns regarding the impact of [COVID19] on cancer diagnoses and long-term outcomes, especially in vulnerable patient populations.”
Also, mammography screening has seen a negative impact, “Our radiology department is going to be slammed just catching up with routine mammography screening. Patients who have been waiting for cancer surgery for 2-4 months are not going to want to wait any longer than needed if they have to go and be localized prior to surgery.”
From screening to diagnosis to surgery to chemotherapy, COVID19 has changed how quickly breast cancer can be treated. It has changed how patients can come to the hospital and it has changed because now, an already stressful situation is made doubly so by COVID concerns – both in patients and doctors.
Looking at the number of people expected to die from breast cancer – who would NOT have died if there had been no pandemic – over a ten year period is about 2500. Current numbers for 2021: The American Cancer Society's estimates for breast cancer in the United States for 2021 are: about 281,550 new cases of invasive breast cancer will be diagnosed; 49,290 new cases of ductal carcinoma in situ (DCIS); and ultimately, about 43,600 women will die from breast cancer in 2021.
Without any kind of change then, some 436,000 women are expected to die from breast cancer between 2020-2030. An additional 2500 women will die as well.
But, living in Minnesota right now, we find ourselves with increasing numbers of infections. In fact, the “now” report from data tracked by Johns Hopkins reports that, “COVID-19 cases up in 29 states, down in 18, flat in 3”. I wonder if the estimate of the increase in deaths due to breast cancer was perhaps too optimistic. Did they notice that the Spanish Flu Epidemic which lasted from February 1918 through April of 1920 continued to affect the planet for over two YEARS? The population at that time wasn’t even two billion; there was virtually NO international travel, and people pretty much died where they lived; except for the soldiers who were the main vector for the flu. With a current population well over SEVEN billion we might well expect the pandemic to last THREE AND A HALF TIMES AS LONG AS the first modern pandemic – or something like EIGHT YEARS…
Dark? Grim? Yep. I sure hope someone smarter than me has got plans in place, because 3.5 x 2500 = 8750…
Resources: https://academic.oup.com/jnci/article/113/11/1484/6319940, https://ascopubs.org/doi/abs/10.1200/JCO.2021.39.15_suppl.528, https://www.beckershospitalreview.com/public-health/17-states-with-rising-covid-19-cases.html
Image: https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcQWFDJVgpz0G9kdb-eRXgRxMiv-Qz-Moaiw9w&usqp=CAU
Sunday, November 14, 2021
ENCORE #171! – “Thanks For Your…um…Support”
We are to support our women. The doctors, nurses, families and well, everyone, expects it.
Of COURSE I do that with all my strength, heart and spirit! I love my wife! I am pulling for her, cheering for her, weeping with her, listening to her. I am as there as I can be.
Others cast their support as well from intimate family and friends to people she hasn’t heard from in years, all the way to ones with whom she parted ways less-than-happily. People who follow and comment on her Caringbridge blog (http://www.caringbridge.org/visit/lizstewart1) are legion.
My question then – and still is – where’s my support?
Of course people support me! Right? OK, to be honest, I was sorta expecting a bit more. Maybe a couple of pats on the back, a chuck under the chin and few words of, “Wow, must be tough for ya, eh?”
That was my expectation. The reality is more like an avoidance reaction. For example, one of the men at school has a wife who is going through breast cancer. They have younger children, so a greater burden has fallen on him than on me with one kid out of the house living his own life and then other starting her third year of college.
But I sorta expected a bit more camaraderie when he told me about it through his email response to my announcement. Instead, we avoid each other and never say a word about breast cancer. Some of the women at school ask about my wife. Lots of them. Many of them. Our church supports her and people ask about her all the time.
But the people I get to thank for their support?
Crickets chirping in the auditorium as I speak into the microphone, “Thank you for your support.
Sunday, November 7, 2021
ALZHEIMER’S RESEARCH RIGHT NOW! #16: The Cause of Alzheimer’s Progression Isn’t What They Thought It Was…SURPRISE!!!
Every month, I’ll be highlighting Alzheimer’s research that is going on RIGHT NOW! Harvested from different websites, journals and podcasts, I’ll translate them into understandable English and share them with you. Today: Plaques and Tangles...NOT what we thought!
Sometimes I think the Human species, in particular the one that lives in the United States, thinks it knows everything. Boss Nass says in Star Wars: Episode One has a similar opinion regarding the Naboo, the Humans who share the world with them. He said to Princess Amidala, “The Naboo think they are so smarty. They think their brains so big.”
We’ve found out that we don’t REALLY know as much as we thought we did. After we “took care of COVID19”, we discovered that things we never even thought about were affected by a cascade of troubles whose root is the pandemic. For example, it’s doubtful that in the summer of 2020 anyone even thought about food and product SHORTAGES (except for sterilizing wipes and toilet paper!), yet here we are, images of countless cargo container ships sitting idle while we go shopping and find empty shelves…
Why would we be surprised that scientists and doctors singing the praises of cures that take care of Alzheimer’s “plaques and tangles” and that all we have to do is find a pill that, when popped, would make the plaques and tangles for “POOF!”.
And here we are; at least two “wonder cures” for Alzheimer’s a lost cause…“For the first time, researchers have used human data to quantify the speed of different processes that lead to Alzheimer’s disease and found that it develops in a very different way than previously thought.”
Huh…how long have they been really trying to find a cure?
“Alzheimer's disease was first described in 1906. In the century since then, scientists have made remarkable strides in understanding how Alzheimer's affects the brain and learning how to make life better for affected individuals and families. Below are some important milestones in our progress, including the founding of the Alzheimer's Association in 1980, which has played a key role in advancing research and raising awareness of the disease.”
Where the previous treatments targeted the proteins found in plaques and tangles, this new data finds that instead of SPREADING from one place in the brain, the proteins start all over the brain and grow individually…
“‘The thinking had been that Alzheimer’s develops in a way that’s similar to many cancers: the aggregates form in one region and then spread through the brain,’ said Dr Georg Meisl from Cambridge’s Yusuf Hamied Department of Chemistry, the paper’s first author. ‘But instead, we found that when Alzheimer’s starts there are already aggregates in multiple regions of the brain, and so trying to stop the spread between regions will do little to slow the disease.’”
As you can imagine, we seemed to have been blindsided by our battle against cancer – because that’s how cancers grow. A cancerous lump in the breast “leaks” cancer cells, which pass through the bloodstream and “take root” elsewhere in the body – the technical term is that the cancer “metastasizes”.
Of course, Alzheimer treatments are created that tackle the problem as if it were a cancer…
But that’s apparently not how Alzheimer’s works. “In AD, tau and another protein called amyloid-beta build up into tangles and plaques – known collectively as aggregates. Brain cells die off because of the interaction with the invasive proteins, and the brain begins to shrink. This results in memory loss, personality changes and difficulty carrying out daily functions.”
At this early stage, there’s nothing to be “done”, but unlike cancers, autoimmune diseases, such a Rheumatoid Arthritis and Multiple Sclerosis, can start in different places of the body; different joints or body systems for example.
While doctors still don’t have RH and MS “under control”, perhaps further research will show that treatments for autoimmune diseases will provide insight in to developing new treatments for Alzheimer’s.
Resources: https://www.sciencedaily.com/releases/2021/10/211029152240.htm, https://www.alz.org/alzheimers-dementia/research_progress/milestones
Sunday, October 31, 2021
ENCORE #170! – David Breasterfield!
I don’t know what it’s like, exactly for my wife, but there are long times now where the idea of breast cancer (and the accompanying metastasis possibility) disappears from my life as if by magic.
Between treatments, which she undergoes every three weeks, life returns to normal. Well, not “old normal”, rather the new normal (see “The World Didn’t Fall Off Its Axis”)…
But during this time, nothing seems to be “different” – we still chat, watch TV, go for walks with the dog, pay bills, see the grandchild, talk to people. Nothing seems to have changed. It’s almost like that magician – David Copperfield – worked his magic on breast cancer and made the whole thing disappear.
[UPDATE: And it’s
STILL the real magic!]
Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg
Sunday, October 24, 2021
Encouragement (In Suffering, Pain, and Witnessing Both…) #18: Dealing With ANGER…
Angry.
We are NOT supposed to be angry because our beloved has “The Big C” and it’s unconscionable to add more stress to their already shattered lives.
We CAN’T be mad because it’s unproductive. We need to be focused on their recovery!
Anger does absolutely nothing but tie our guts up in knots; blinds us to needs our loved one has; is incredibly selfish!
I was angry. My daughter was angry. My son – no obvious effect except supportive…which of course shames me.
But what if we ARE mad? At God…at society…at chemical companies…at biology…How much more complex can cancer get?
Is there any kind of hope?
King David shouted at God, “How long, O LORD? Will you forget me forever? How long will you hide your face from me? How long must I wrestle with my thoughts and every day have sorrow in my heart?” (Psalm 13:1)
“And the nations were enraged…” (Revelation 11:18)
King David served God for a long time; Jesus will return to save His people. He can handle our anger. In their book, ANGRY WITH GOD, the authors quote Pierre Wolff: “When people can express harsh feelings to the One who [who is] the object [of that anger], love is already stronger in them than their feelings. Love is already transforming, transfiguring, this feeling into something else, something closer to love than to hatred.”
On the blog, “PS, I Love You”, author Khadejah wrote, “I was frustrated, scared, and sad that they couldn’t tell me sooner. I wasn’t mad at my mom for being diagnosed with breast cancer, I was mad that she always has to downplay her health to protect me. Well, I’m not doing that anymore. It’s time for me to protect her. I’m strong enough to handle it.”
At the Stanford Medicine website, I found, “Although your spouse has cancer, the illness is really happening to both of you. Your life is being disrupted in many of the same ways. You are sharing many of the same emotions and concerns…It can be tremendously reassuring and comforting to your loved one to know that the two of you are facing the illness together and that your support and involvement will be steadfast and unwavering regardless of what happens.”
A book from the National Cancer Institute, aimed at teenagers, concludes: “No booklet or person can tell you exactly how everything is going to work out. Cancer is tough, and your life may never be quite the same. But in the end, you will get through it. Why? You’re strong. And you are capable—even if you don’t always feel that way.”
Finally, from the 2010 article, “Coping with cancer: The perspective of patients’ relatives”, by Mariët Hagedoorn, Ulrika Kreicbergs & Charlotte Appel, the conclusion, “…cancer has an effect on the whole family. Remarkably though most relatives adapt well to the cancer of a loved one. That is only a minority appears to be at risk for psychological morbidity. Bereavement has been found to impact psychological well-being in the short-term, but it does also not appear to be a major risk factor for severe psychopathology…Future studies that focus on the interactions between patients and family members are of great importance to further the field by providing more insight into the family dynamics of dealing with cancer.”
Resources: https://www.tandfonline.com/doi/full/10.3109/0284186X.2010.536165, https://www.cancer.gov/publications/patient-education/when-your-parent-has-cancer.pdf, https://med.stanford.edu/survivingcancer/cancer-and-stress/when-your-spouse-has-cancer.html, https://psiloveyou.xyz/my-mom-told-me-she-has-cancer-and-i-got-mad-at-her-ba3c88b5b9a0, https://www.amazon.com/Angry-God-Michele-Novotni/dp/1576832228
Image: http://www.quoteambition.com/wp-content/uploads/2017/04/encourage-quotes-destiny.jpg
Sunday, October 17, 2021
ENCORE #169! – The World Didn’t Fall Off Its Axis
Nine Thursdays ago, Liz had the biopsy that confirmed that she had breast cancer.
I will never forget that day: the blood dripping down the breast; holding Liz’s hand as the dark shadows formed on the ultrasound screen; the needle withdrawing the cells and depositing them in small vials of liquid preservative; the dim light of the procedure room; Liz’s hand squeezing mine; the doctor in gown and mask and goggles; soft words of deep regret…
Everything changed as I walked into the foyer to call my parents; my best friend; my brothers and sister…
Then came the cold rush toward a double mastectomy – nothing would ever be the same again. Nothing COULD ever be the same again.
Outside, it was spring. At work, graduation was weeks away and seniors had to be shepherded; at Liz’s work, kids came down with colds and teachers wondered what was going on for a few brief moments. And then, the surgery was over and we had to wait for the healing until chemotherapy could begin.
Liz’s breast cancer, for all it knocked our world askew changed nothing else outside of us. The garbage still accumulates, the checkbook still needs balancing and aside from a couple of simple scores we experienced by throwing the “C” word around (speedy delivery of a new washer when Liz shared that we needed it to wash clothing poisoned by chemo leaking out of Liz’s pores – and the scheduler had an aunt who was a breast cancer survivor; and the possibility of Mary using it on an essay for a scholarship for her third year of college).
Our lives are still upside down, but the rest of the world goes on as always.
I’m not sure what I’m learning from that, but I’m going to try and take my lessons from the BEST it has to offer: I need to remain sympathetic to those who suffer disaster, even after it leaves the headlines and falls to the back page; I need to consider those who CANNOT afford chemotherapy; I need to be thankful that we live at the dawn of the second decade of the 21st Century and not the dawn of the second decade of the 20th Century.
Our world is upside down; the rest of the planet is not.
Thanks be to God for that!
Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg
Sunday, October 10, 2021
BREAST CANCER RESEARCH RIGHT NOW! #79: New Study Shows New Drug Eliminates Breast Cancer in Mice!!!!
“A new approach to treating breast cancer kills 95-100% of cancer cells in mouse models of human estrogen-receptor-positive breast cancers and their metastases in bone, brain, liver and lungs. The newly developed drug, called ErSO, quickly shrinks even large tumors to undetectable levels.”
First of all, I need to put my hand over my heart and say, “All is well…” (from my daughter-in-law’s favorite movie, “Three Idiots” (watch it if you don’t mind subtitles, but it is funny, warm, and everything a Bollywood movie should be!) I was so excited, but I had to remind myself that the end is not nigh!
Why? Because right now ALL that they’re reporting is mouse trials, which is a long, long way away from you being able to go to your nearest Breast Cancer care center and demand the new drug! Most typically, the drug goes through three stages. First is preclinical research, when the drug is found and first tested in a test tube and in animals. Next, there are clinical studies when the drug is tested in people (many large cities have research institutes where you can sign on to be part of such a study). [I was involved with a family heart disease study called ARIC (Atherosclerosis Risk in Communities) as well as a study looking at the efficacy of mega doses of Vitamin D3 in preventing Diabetes…I was dismissed from the study when I developed a kidney stone…which, apparently, they expected would happen to some participants…]. The last stage is Post-clinical research, which takes place after the drug is approved and studies continue looking at long-term effects of the drug being studied.
ErSO researchers are still in the preclinical stage and likely will be for some time.
HOWEVER, the drug has an amazing performance, and the mice in the study didn’t develop any resistance to the drug, either. If it looked like some of the cancer escaped the first round of therapy and began to metastasize, a second round took care of the cancer cells as it had the first group of cells. “It is striking that ErSO caused the rapid destruction of most lung, bone and liver metastases and dramatic shrinkage of brain metastases, since tumors that have spread to other sites in the body are responsible for most breast cancer deaths.”
HOW does it work? First of all the technical explanation: “The activity of ErSO depends on a protein called the estrogen receptor, which is present in a high percentage of breast tumors. When ErSO binds to the estrogen receptor, it upregulates a cellular pathway that prepares cancer cells for rapid growth and protects them from stress. This pathway, called the anticipatory Unfolded Protein Response, or a-UPR, spurs the production of proteins that protect the cell from harm.”
Explaining estrogen receptors in a cells is best shown with a picture:
In a breast cancer cell, there are LOTS of these estrogen receptors. When the cells become cancerous, a “cellular pathway [opens up] that prepares cancer cells for rapid growth and protects them from stress – in other words, it spurs the production of proteins that protect the cell from harm.”
ErSO latches onto the estrogen receptor site and kicks it into overdrive, so instead of gently protecting the cancer cell from the body and any kinds of cancer drugs used, the cell starts to eat itself. It ONLY works on cells that have this estrogen receptor site…which is most cancer cells. It leaves the rest of the body’s cells alone – including hair cells…(many chemotherapy drugs kill hair cells, which is why hair loss during chemo is common…)
From a recent article in INTERESTING ENGINEERING, “Human clinical trials will go forward with a Bayer AG license of the new drug, with an eye toward testing ErSO's effectiveness against a broader spectrum of cancers that carry estrogen receptors.”
At any rate, this isn’t something we can use TODAY, but in the future? Who knows. Sounds like a cure to me!
Resources: www.sciencedaily.com/releases/2021/07/210722113058.htm, https://www.cancer.net/research-and-advocacy/introduction-cancer-research/how-are-cancer-drugs-discovered-and-developed, https://www.cancer.gov/sites/g/files/xnrzdm211/files/styles/cgov_article/public/cgov_image/media_image/2021-03/Functioning-ER_0.jpg?h=42b4009f&itok=RdBp3vn3, https://interestingengineering.com/kill-breast-cancer-cells
Image: https://inteng-storage.s3.amazonaws.com/img/iea/QjOd44kWOd/sizes/kill-breast-cancer-cells_md.jpg
Sunday, October 3, 2021
ENCORE #168! – Bust Drug!
Last week we spoke with the oncologist. What the heck is that and why is it called that?
If you’re like me, you’ve been snowed under the uncounted number of fancy terms: mastectomy, oncology, lumpectomy, pathology, chemotherapy, lymphedema and a zillion others.
Now we come to the big O…Why don’t they call it what this person is: a cancerologist? At least I’d understand that! So what’s an “onco”? What’s a “logist”?
My dictionary says this: “1857, coined in English from Modern Latin onco = ‘tumor’, from the original Greek word, onkos = ‘mass, bulk’ + logy = ‘science or study of’”. So an oncologist is someone who studies tumors, masses and bulks.
So I get that, now. What about the other terms? After spending time internet searching every word I didn’t understand, I thought I had things pretty well under control. Then the oncologist tossed out some really, really weird terms: Taxotere + Adriamycin + Cytoxan and the next day, something called neulasta. These are what I’m coming to think of as “bust drugs” – at least as far as I can tell, they’re used to combat any possible cancer that has found its way from the breast and axillary lymph nodes (there are those fancy terms again!) into the rest of the body. A friend of ours had a scare that the cancer cells had broken free of the breast and caused a brain tumor. That wasn’t the case, but she does have lesions on her bones. So I did a little reading on this page: http://en.wikipedia.org/wiki/Breast_cancer_chemotherapy , then I went to GOOGLE and in the main page, typed “define: xxxxx” and hit enter. You should be able to do this for any of the drugs you’re going to run into during your wife’s breast cancer battle. In Liz’ case:
Taxotere: anti-mitotic chemotherapy medication (that is, it interferes with cell division)
Adriamycin: an anthracycline (a kind of substance that messes up cancer cell DNA) antibiotic…and like all anthracyclines, it works by inserting itself into the cancer cell’s DNA so the cells can’t make new cancer cells
Cytoxan: a cyclophosphamide that has been converted into a non-toxic "transport form". This transport form is a “pro-drug”, subsequently actively transported into the cancer cells. Once in the cells, enzymes convert the drug into the active, toxic form that kills the cancer cell
Neulasta: recombinant human granulocyte colony-stimulating factor (GCSF) analog used to stimulate the bone marrow to produce more neutrophils (white blood cells) to fight infection in patients undergoing chemotherapy
OK – I get some of it now! Sorta wish doctors and clinics would speak in plain English, but then, they wouldn’t sound so…doctoral if they did. Anyway, this made me feel better. Hope it helps you, too!
Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg
Sunday, September 26, 2021
RELATED MEDICAL ISSUES RIGHT NOW! #3: The Advance of Lymphedema “Massage”!
From the first moment I discovered my dad had been diagnosed with Alzheimer’s, it seemed like I was alone in this ugly place. Even ones who had loved ones suffering in this way; even though people TALKED about the disease, it felt for me like they did little more than mumble about the experience. Not one to shut up for any known reason, I added a section to this blog…
The immediate crisis that was Breast Cancer and Alzheimer’s have passed. There are, however ancillary issues like testing and treatments that may not be directly related to BC or A but intersect with them. Harvested from different websites, journals and podcasts, I’ll translate them into understandable English and share them with you. Today: https://thelymphielife.com/2021/04/16/compression-pump-review-pumped-about-the-lympha-press-optimal-plus/
My wife has been using one of these for several months now.
While it hasn’t made the compression sleeve, manual massage (rarely now), and the night-time pressure sleeve; it HAS helped and it IS easy to use.
Comparatively.
What is a Compression Pump garment? “…medical devices that stimulate the movement of fluid in the body…three main parts: the console, which supplies pressurized air to the garment; hoses, which transfer the air from the console to each of the garment’s chambers; and the garment itself, which has inflatable air chambers. (The number of chambers in the garment can vary depending on the model of the device, as can the range of pressure offered.) These chambers inflate and deflate in sequence, applying directional massage to move stagnant or trapped fluid upwards toward alternative lymphatic channels.” While the whole shebang takes up half of a side table and is awkward for my wife to put on, it does seem to work…
That same awkwardness also is a deterrent! In the summer, wrapping herself in a bulky “jacket” can be very hot (though with only 3 months of summer (!), it’s not a huge issue in Minnesota.
Perhaps the biggest challenge of all, is that this is a never-ending process. Lymphedema will NEVER be healed. It’s a lifelong condition that, until new technologies are developed that include “Star Trek”-like “medical magic”, it’s not going away.
If you don’t know, breast cancer cells escape the original infection site and can spread throughout the body. Typically, the first place they hit when they’re escaping, are the lymph nodes. When the cancerous breast tissue is removed, they typically biopsy the nodes: “Stage II A is based on one of the following: Either there is no tumor in the breast or there is a breast tumor up to 20 millimeters (about the size of a grape), plus cancer has spread to the lymph nodes under the arm.”
Movement and muscle pressure press the lymph nodes, moving the lymph through the body. The lymph vessels essentially run parallel to the blood vessels, but there’s no “lymph heart” to push it. The lymph vessels have no muscles of their own and depend on pressure from the surrounding muscles to circulate the lymph. When the nodes are removed, the collecting sacs are drained and the lymph is moved around the body.
Remove the nodes and the volume of lymph that can be moved – typically out of the arm in cases of breast cancer – drops drastically and lymph that normally circulates starts to pool, swelling the limb. SOMETHING has to move it and that becomes the responsibility of Human hands…or Human technology.
Wrapping the body and arm in an air-sac-filled lymphedema garment, then pressurized in succession pushes the lymph around and reduces edema…
At any rate, it’s high-tech and as effective as a device replacing removed lymph nodes can be; and until the day comes when they can do lymph node transplants or create artificial lymph nodes, or hand someone a pill that stimulates the growth of brand new lymph nodes https://breastcancerreaper.blogspot.com/2011/07/doctor-gave-me-pill-and-i-grew-new.html…this is the best substitute we have.
Sunday, September 19, 2021
ENCORE #167! – Observations of A Breast Cancer Husband – AND AN UPDATE Ten-and-a-half Years Later!
I wanted to us a blog title that was simple and would pop up on a normal GOOGLE search, but “Breast Cancer Husband” was already taken (http://www.breastcancerhusband.com/ Still around…). So was “Stand By Her” (http://standbyher.org/ Dead link…). I went to those sites, but one has been corrupted by endless spam and the other has been inactive for nearly a year. Another I tried seems full of advertising and another still was a long advertisement for an exercise program developed by a breast cancer husbands’ wife.
So here I am, because I need someone to talk to RIGHT NOW and I want to talk to other husbands, fiancés, and lovers of women with breast cancer.
Our journey is only two weeks old. While my wife Liz knew something was seriously wrong inside of her body, I was clueless. Until two weeks ago, a biopsy at the Breast Care Center at Regions Hospital in Minnesota ( ) confirmed that she had infiltrative ductal carcinoma. It was the most common form of breast cancer. Treatments had been worked out. Research had been done. It is survivable…
A week later, Liz had a bilateral mastectomy.
I’m writing this six days after the surgery.
I’ve searched the internet and I haven’t been able to find an active husband-whose-wife-has-breast-cancer blog that I could chat on. Maybe it’s because their wives have been survivors for years and they can relax, or they can take a step back, or they’re exhausted, or the danger is no longer clear and present.
Not so for me. Based on everything I’ve read so far, this job is only just beginning.
Ah, the name of the blog: I couldn’t call it Breast Cancer Husband, so I went to the thesaurus to look for synonyms and the etymological dictionary for word roots. It all comes down to a “husband” having something to do with farming. Words like cultivate, garden, graze, grow, harvest, landscape, seed, sow, tend and till the soil are all related to “husband”. The word “reap” was in there, too. I finally settled on the most personal title I could find: Guy's Gotta Talk...About...and unfortunately, the blog expanded in subject matter...
At first that didn’t do anything for me, but when I came across “reap”, of course the first thing I thought of was the Grim Reaper. Then my mind went to work, the Reaper’s robe turned pink and I had the image in my head of the Breast Cancer Reaper: cutting down breast cancer, growing hope, harvesting love, creating a new landscape (in more ways that one!), cultivating peace, sowing joy, tending the field, the Garden of Eden, good and healthy eating…
At any rate, this will be a personal blog with medical LINKS – I’m no doctor, though I have been a science teacher for three decades. This blog may wax and wane humorous as well. Humor is how I deal with grief and tragedy (actually, humor is how I deal with just about everything and everyone…)
We’ll see. All I know right now is that my wife has breast cancer, she, my daughter (whose blog links are below), my son & daughter-in-law & grandson and the rest of both of our families and friends, are dealing with this in different ways.
I should be here once a week, probably Saturdays, and my goal will be to provide something that’s short, personal and helpful.
That is all…
But it wasn’t. It never is. Everything changed as we dealt with the disease. I changed and I am not the same man today that I was then. I avoided bitter. I found allies – in my family, my coworkers, and from total strangers.
I would NEVER repeat this again, but once your loved one has been treated and is pronounced cancer-free (and that IS a happy day!!!), BC can and does rear its ugly head again. A man with whom I’d once been in a writer’s group, became one of my most solid anchors as our wives walked through the landscape of this debilitating and hideous disease. His wife is suffering again, now with metastatic breast cancer of the bones (I detail a bit of that here: https://breastcancerreaper.blogspot.com/2021/08/guys-gotta-talk-about-breast-cancer.html).
It is a never-ending battle, a never-ending Sword of Damocles poised over the neck of every person with BC and every one of their loved ones. I pray regularly that a true and lasting cure will be found…
Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg
Sunday, September 12, 2021
ALZHEIMER’S RESEARCH RIGHT NOW! #15: Math Formula Predicts Your Alzheimer’s FUTURE PRACTICALLY 100% OF THE TIME!?!?!?!?!?!?! And OTHER New Discoveries!
From the first moment I discovered my dad had been diagnosed with Alzheimer’s, it seemed like I was alone in this ugly place. Even ones who had loved ones suffering in this way; even though people TALKED about the disease, it felt for me like they did little more than mumble about the experience. Not one to shut up for any known reason, I added a section to this blog…
Every month, I’ll be highlighting Alzheimer’s research that is going on RIGHT NOW! Harvested from different websites, journals and podcasts, I’ll translate them into understandable English and share them with you. Today: Using math to predict my chances of getting Alzheimer’s? (Why isn’t THIS headline news instead of another probably disappointing “drug” that costs a gazillion dollars and just does the same thing that some different drug did before? (https://breastcancerreaper.blogspot.com/2021/07/alzheimers-research-right-now-14-fda.html))
Two separate studies show similar results in VERY different ways.
In the first, scientists used stem cells in people (taken with their permission, these cells come from an individual – basically cells that aren’t heart or brain or skin or nerve cells. They were able to “turn on the cells” so they became new brain cells in a test tube. The people they started with had either been identified with Alzheimer’s or had passed away from Alzheimer’s complications. The new cells aged, and as they did, they produced the two main suspects in AD – amyloid plaques and Tau tangles – plaques and tangles. They behaved exactly as the cells in the study volunteers had.
The result: they found that there is NO SINGLE THING that causes Alzheimer’s in people. It’s a complicated mixture of genetics, environment, exercise, what you eat, and even what kind of medications you take. Only fifty people took part in the study – but it has yielded some startling information and only the future can tell what else we might learn!
The second discovery? “Researchers from Lithuania developed a deep learning-based method that can predict the possible onset of Alzheimer's disease from brain images with an accuracy of over 99 percent.”
OK, let’s unwrap this a little. What’s “deep learning”? “Deep learning is a…technique that teaches computers to do what comes naturally to humans: learn by example…[it’s behind driverless cars, letting them tell the differences between a stop sign, a pedestrian, and a lamppost. It lets you use Siri or HeyGoogle, or whatever system to voice control your phones, tablets, TVs, and hands-free speakers. Deep learning lets your computer “learn” to perform classification tasks directly from images, text, or sound.”
So, a computer with the deep learning program has learned to predict whether or not I’ll get Alzheimer’s – with nearly 100 % accuracy!
The problem? You have to get an fMRI scan for this to work. What the heck’s an fMRI? “Functional magnetic resonance imaging (fMRI) measures the small changes in blood flow that occur with brain activity…fMRI may detect abnormalities within the brain that cannot be found with other imaging techniques.” It’s the detection of the abnormalities that form the basis of the ALGORITHM (a mathematical formula) that analyzes changes in a person’s brain over time.
Of course, PEOPLE could do this, but it takes lots of time. Computers can do it faster and better. But THAT’S NOT WHERE IT STOPS; working with the computer data, doctors can also look at variables outside of what the computer was programmed to do….
Neither of these techniques – and that’s what they are, sharpened tools of things scientists have been trying to do for yours, combined with cloning techniques and advanced computer techniques – to better understand what goes on inside an AD person’s head. Once they understand what IS happening, they can figure out how to STOP WHAT’S HAPPENING…
And that’s when we get a cure.
Resources: https://medicalxpress.com/news/2021-09-brain-patient-specific-alzheimer-insights-cognitive.html, https://medicalxpress.com/news/2021-09-algorithm-alzheimer-percent-accuracy.html, Deep Learning: https://machinelearningmastery.com/what-is-deep-learning/
Image: https://www.meduniwien.ac.at/web/fileadmin/_processed_/e/1/csm_shutterstock_142671010_4683b6bf13.jpg
Sunday, September 5, 2021
ENCORE #166! – Metastatic Breast Cancer: Skin Cancer (aka Melanoma)
“Where’d this come from?”
Well, see, my brother, sister, and sister-in-law were all diagnosed with skin cancer and successfully treated. As well, an old friend and teaching colleague of mine was recently diagnosed and treated for skin cancer. (The worst part there was that he’d posted a picture of the excision on FaceBook and many (if not all) of US teased him about bonking his head, etc. Thoroughly stung when he later announced that it was a cancerous spot removed, I apologized both on his timeline and to him in person. NOT that I “should have known”, even so...)
Lately, I’ve had these dry, red patches on my face and while using lotion makes them fade, I have (duh) been wondering if they were signs of skin cancer. That led – at least in my mind – to wondering if there was any connection between breast cancer and skin cancer.
Not surprisingly, there is: “Since breast cancer is the most frequently diagnosed non-cutaneous (non-skin) cancer among women in the United States, it is not surprising that many individuals with breast cancer will develop melanoma (the deadliest form of skin cancer) and vice versa...recent studies exploring how often individual patients develop both cancers suggest that it [is] more than just coincidence: A recent study by Murphy, et al, for example, found that patients with either breast cancer or melanoma were almost four times more likely to develop the other malignancy than probability would lead researchers to expect. Specific causes linking the diseases may be in play, and genetic or environmental factors may also contribute. On the other hand, the association may at least partly result from more rigorous detection – in other words, a detection bias. This occurs when health care providers who carefully monitor cancer patients detect a second cancer that might otherwise have been missed.”
Also: “Sometimes cancer cells can start growing in the skin. This is not the same as having skin cancer, melanoma, or cutaneous T cell lymphoma (a type of lymphoma that affects the skin). The secondary cancer may start to grow on or near an operation scar where the primary cancer was removed. Or sometimes secondary skin cancers can grow in other parts of the body.
A secondary skin cancer looks like a pink or red raised lump (a bit like a boil). Skin nodules can be treated. It is important to tell your doctor if you think you have one, because if it is not treated, it may become ulcerated [has a ‘cauliflower’ look to it; also it can be weeping].”
So it appears that breast cancer CAN spread to the skin – yet it doesn’t seem to be a common occurrence. I had a bit of trouble even finding places where the two kinds of cancers were linked. That doesn’t make it comforting – just one less-likely thing for ME to worry about.
Resources: http://www.skincancer.org/skin-cancer-information/melanoma/breast-cancer-melanoma-link, http://www.cancerresearchuk.org/cancer-help/about-cancer/what-is-cancer/grow/where-a-cancer-spreads
Sunday, August 29, 2021
GUY’S GOTTA TALK ABOUT BREAST CANCER #47…Rearing Its Ugly Head In the Life of an Old Friend…AGAIN…
And then it wasn’t and now, despite the story and the award-winning novel, he really doesn’t write fiction much anymore. He focuses on writers like me, who may or may not be “up-and-coming” (at the ripe old age of sixty-four). At any rate, cancer, in our respective wife’s cases, is no respecter of persons.
In fact, you might say that breast cancer is anti-personnel. Like a mine, it can be laid on a road that appears perfectly clear. It can be laid in a rice paddy or a corn field used by villagers or tourists, by an enemy soldier or a friendly soldier or someone out to wreak havoc and sow terror.
Her bone cancer has receded and surged; she’s been declared cancer-free and then informed that the cancer had returned. My friend is retired from his regular job now, so he spend six hours a day doing a medication infusion; another six hours a day cleaning, keeping house, comforting friends and relatives, and feeding himself. Absolutely, he has help. Absolutely others are terrified of the return of breast cancer…
He sleeps about five hours a day, and the rest of life occupies the other seven hours doing everything else that needs doing (like building a ramp into their home with his son) – and running an online magazine called STUPEFYING STORIES.
I met my friend long before he’d started SS, in a writer’s group. We worked together while he was becoming famous, and then parted ways for various adventures. We reconnected several years later when I stumbled across one of his early blogs. I started contributing, and we became friends again. Then I called him one day to tell him that my wife had been diagnosed with breast cancer.
So…while waiting in the hospital for a checkup and his wife’s treatment, he posted a picture and asked if anyone was interested in writing a story using it as an inspiration. I saw it, and after two hours, I had a story. I submitted it, and instead of the regular email accepting it, I got a call from an unknown caller last night.
He left a message, and when I recognized it as my friend, I called him back immediately. He liked the story and wanted to publish it today. Once we’d chatted about that, I asked how his wife was doing.
The conversation turned serious as only a conversation between two people who intimately understand the horror of breast cancer can run. I finished by saying, “All I can say is that we’re praying for the two of you. I can’t offer anything else. It’s just our prayers.”
He said, “But you have. You wrote the story. It’s a good story. You did that and it made me feel good.” We said our goodbyes and the next day, I wrote this entry.
Ultimately, this whole story was all about one thing: when you talk to someone whose loved one is suffering from breast cancer – or any cancer – you don’t offer platitudes or encouragement or anything else tangible. You offer yourself; your care; your heart; and (yes), your love. It’s all we have in the closest parts of our hearts, and sometimes, it’s just what they – or we – needed.
The story that came from his suggestion: http://stupefyingstories.blogspot.com/2021/08/doctor-to-undead-by-guy-stewart.html
Image: http://wrex.images.worldnow.com/images/23784252_SA.jpg
Sunday, August 22, 2021
ENCORE #165! – Biking and Walking and Haircuts for Causes
I have been “funding” for causes ever since I rode in my very first March of Dimes Bike-a-thon in 1972. It was late spring, but the day we started it was snowing. Not blizzarding; not blinding…but snowing.
I finished the twenty-five-mile ride that had taken me around the Minneapolis lakes and out to Anoka. As weary as I was, I realized that I was hooked.
I did a few more of those, a couple of other “-a-thons” and then nothing really for several years.
A dozen years ago, my wife was diagnosed with Type-2 diabetes. I joined several bikes and walks, and one summer, my son and I did the 45-mile bike for diabetes. We did that twice, and one summer I did it alone. The next summer, my son invited me to ride with him on a fund raiser against MS, as a friend of my wife’s passed away because of it.
Then came breast cancer five years ago. There were no “doable” biking events for me then – I was in no shape to do the Susan G. Komen bike-a-thons at the time, so for a while I did nothing.
Three years ago, my school district sponsored the Relay for Life and we finally “came out of the closet”. We’d avoided it before then, though I’d been asked and we’d discussed it. For whatever deep-seated reason, we didn’t feel ready to join the even. We took the big step two years ago (http://breastcancerreaper.blogspot.com/2014/05/guys-gotta-talk-about-2the-relay-for.html) and then again last summer (http://breastcancerreaper.blogspot.com/2016/05/relay-for-life-2016-today.html). The group of young people with whom we walked was vital and dedicated. It was delightful!
I have yet another cause now – Alzheimer’s. My father was diagnosed a few years ago, and now the disease rears its hideous head on a near-daily basis. He lives in a memory care unit, but the sad fact is that there is absolutely nothing that can be done for him. Though undiagnosed, I think my mother suffered from it as well; though with her other issues, I’m not sure if it was a cause or effect. I only that know she’s been in a major fog for months.
I realized that after she passed a week ago, there were far too many “causes” in my life; far too many medical problems with events to raise money to fight for a cure.
While I’ve recently started to feel a pressure of “can this go on?”, I also realize that while we do in fact, live in the 21st Century and there are many things we CAN do; there are still so many things we CAN’T do that it can seem overwhelming…
The wife of a pastor of mine once said, “It’s better to light a candle than to curse the darkness.”
I pondered this for many years, not really understanding it. Now approaching my 60th birthday, I think I may have a handle on it: I will keep this blog rather than start another. I only have so many candles and I’ve tended this one for the past five years. While it’s not comfortable, it’s a candle I now know well – and it’s a candle that has truly pierced the darkness. I will keep lighting this one for a long time to come. (What about the haircuts? That was part of a fundraiser for the high school theater department and covering the event earned me my first piece of PAID writing!)
Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg
Sunday, August 15, 2021
Encouragement (In Suffering, Pain, and Witnessing Both…) #17: SUPPOSED to be "Good Words From the Medical Community", But...
I tell you, finding encouraging quotes from doctors and nurses, nurse practitioners and physician assistants, and other medical personnel aimed at patients being treated for cancer – of ANY sort – was a bust! (No pun intended!)
It appears that they don’t have time to write down the encouragement that they obviously dole out on a moment-by-moment basis.
So, let’s look at the research:
“Although clinicians [the ‘front-line’ workers in cancer care, listed (by no means exhaustively) above] likely view kindness as a requisite component of providing cancer care, a number of stressors may interfere with their good intentions. The complexity of health care delivery systems, coupled with financial and institutional pressures, can create a barrier between clinicians and the care they wish to provide. Indeed, the care itself can be a barrier, as compassion fatigue is well described in providers who are routinely involved in emotionally charged conversations…”
So they MAY give encouraging support, but the brutal truth is that they aren’t getting paid to SAY nice things. They’re getting paid to do EFFECTIVE things in combatting cancer.
While the research doesn’t say much in the way of actual “encouragement”, it does lay out a plan for clinicians to follow when interacting with patients. This plan includes six “kindnesses”:
1) Deep Listening: clinicians take time to truly understand the needs and concerns of patients and their families
2) Empathy for the patient with cancer: expressed individually and by “the care culture”
3) Generous acts of Discretionary Effort: including timely care delivered by tools and systems that reduce stress and anxiety
4) Gentle Honesty: what is happening is conveyed directly in well-chosen, guiding words
5) Support for family: the physical and mental health of the supporting family (no matter what the constellation of the family is!) and their well-being are vital components of the care the patient receives
6) All of these work together as long as the clinicians are mindful both that the patients they’re treating are at a literal ALL TIME HIGH stress level, AND they understand that the clinicians themselves are also under stress
Of course this seems obvious when we’re sitting here in our own secure places, some people having sent their loved one Home, others at the very beginning of the long ordeal and are steeped in hope. But at the hospital, in the clinic, in the chemotherapy room, in the radiation suite…those are the times that the care and compassion of the CLINCICIANS can make a difference; the times when the family and loved ones can only look on in mute terror or stunned acceptance.
That is when the mindful clinician can step into both the family and the patient and create a calming, confident atmosphere that, while it CHANGES nothing, it feels hopeful, and it feels like someone knows what they are trying to do.
Image: http://www.quoteambition.com/wp-content/uploads/2017/04/encourage-quotes-destiny.jpg