Saturday, September 26, 2015

ENCORE # 21! – Big Hairy Deal


http://voluume.fr/wp-content/uploads/2012/05/Encore-Sessions.jpgFrom 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 November of 2011…

It’s been my experience that men don’t usually care that much about their hair. It’s also been my experience that hair is VERY important to women.

That’s why the most obvious result of chemotherapy – alopecia – has such a profound impact on women and the men who love them. Women who lose their hair are OBVIOUS to everyone who looks at them. They are noticed; they stand out in public in a way a bald man will never stand out. We admire it even – Kojack, The King of Siam, Captain Jean-Luc Picard are all heroes and we don’t even notice their shiny heads. But bald cops, Queens and starship Captains would be so odd that most of us wouldn’t even remember the rest of the record, reign or voyage.

As men with wives, girlfriends and mothers who will or who have lost their hair because of breast cancer, we stand in an unusual place.

We have to be honest encouragers.

“Honey, how does this wig look on me?”

“Is the scarf the right color for my skin?”

“If I wear a baseball cap every day, will you still think I’m sexy?”

“If I don’t wear anything on my head in public, will you be embarrassed?”

The first response to each question is initially: “It looks fine, dear”, “It looks fine, dear”, “Of course I will”, “Nothing you could wear or not wear would embarrass me”.

The problem with the response is that our loved ones are our loved ones and a diagnosis of “stupid” does NOT go hand-in-hand with a diagnosis of breast cancer. They know when we are patronizing. I learned the hard way not to patronize my wife. When she asked one of the questions above, I had to take my time and think. I had to consider my answer not because I wanted to be right, but in order to battle the deep-seated desire to avoid inflicting any more pain on a person worn out from the constant fight against cancer.

So I studied her as she modeled the wig, scarf, hat or bald pate.

Honestly responding, I gave my opinion. When it was honest, it gave her FEEDBACK and while the ultimate choice was still hers, she most likely felt that my response – especially before her hair started to grow back – was honest and another data point in her effort to decide what to wear that day.

Ultimately, I could do nothing more important that to be consciously HONEST!

Sunday, September 20, 2015

BREAST CANCER RESEARCH RIGHT NOW! : Diabetes = Peripheral Neuropathy; Chemotherapy = Peripheral Neuropathy…What If You Have BOTH?


http://ecx.images-amazon.com/images/I/41S6QJ638WL.jpgFrom 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…

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 I’ll be referencing a number of different sources – let me state immediately and LOUDLY:

I AM NOT A DOCTOR. I AM READING THE SOURCES I NOTE BELOW AND SUMMARIZING, SOMETIMES CHANGING TECHNICAL TERMS INTO MORE COMMON ENGLISH DEFINITIONS. THIS IS NOT MEANT TO BE A DIAGNOSIS OR TREATMENT BLOG BUT A THOUGHT-PROVOKING ONE.

“Peripheral neuropathy is a set of symptoms caused by damage to the nerves that are away from the brain and spinal cord. These distant nerves are called peripheral nerves. They carry sensations (feeling) to the brain and control the movement of our arms and legs.”

Some of the symptoms of PN are: “pain that might be present all the time or come and go, like shooting or stabbing pain); burning; tingling; loss of feeling; it’s hard to pick up things and you drop things more often; balance problems; trouble with tripping or stumbling while walking; more sensitive to cold, heat, touch, or pressure; shrinking muscles; muscle weakness; trouble swallowing; constipation; trouble passing urine; blood pressure changes; as well as decreased or no reflexes.”

What causes PN?

Diabetes can. Chemotherapy with certain drugs can.

What if you have diabetes AND have been successfully treated for breast cancer?

Over a decade ago, it seems that the treatment was essentially: MORE DRUGS! (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430688/)

Doctors today are taking a closer look at dealing with it: “In a recent…analysis…the…prevalence of [neuropathy caused by breast cancer chemotherapy] was 48%. Within the first month of completing chemotherapy, the prevalence of [neuropathy] was 68%; after 6 or more months of completing chemotherapy, the prevalence of [neuropathy] decreased to 30%.”

What’s the solution here?

There isn’t one yet. There are hopeful signs, however: “Clinical trials investigating… acupuncture and massage therapy are under way. A few small trials have investigated the use of Scrambler therapy, a device that provides noninvasive cutaneous electrostimulation, to treat [neuropathy]. The use of topical menthol...is also being investigated...”

That’s breast cancer.

How about diabetic neuropathy treatments?

Quite plainly: “There are currently no curative options for people with diabetic neuropathy; instead the condition is treated through pain relief or blood glucose control to stop the condition getting worse.

In the same article from which the above quote was taken, there seems to be some hope in using stem cells FROM THE PATIENT THEMSELVES (“Mesenchymal stem cells can be obtained from several sources in the body, including fat tissue, tendons, umbilical cord blood and bone marrow. The most successfully transplanted MSCs have been those from the bone marrow.”)

Currently, doctors treat diabetic neuropathy “...based on three major approaches: intensive glycemic control and risk factor management, treatments based on pathogenetic mechanisms, and symptomatic pain management. Clinical guidelines recommend pain relief...through the use of antidepressants…opioids and topical agents such as capsaicin…[other drugs are listed] [But]...there is a growing need for studies to evaluate the most potent drugs or combinations for the management of [neuropathy] to maximize pain relief and improve quality of life. A number of agents are potential candidates for future use in PDN therapy, including [a sodium ion channel that in humans is encoded by the SCN9A gene]antagonists, calcium channel blockers, NGF antibodies, and angiotensin II type 2 receptor antagonists.”]

So – drugs, drugs, and more drugs...

You DID notice that the treatments for chemotherapy-induced neuropathy and diabetic neuropathy DON’T have anything in common, right?

If you GOOGLE “diabetic neuropathy, chemotherapy-induced neuropathy, treatment”…you get nothing that includes both. With 11 million women in the US with diabetes (https://diabetessisters.org/women-diabetes) and 300,000 dealing with breast cancer in the US alone (http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-042725.pdf), you’d think that someone, somewhere, would link the two and do a teensy bit of research.

Anyone care to join me in politely asking the medical community to “GET ON THE STICK!!!!!”


Saturday, September 12, 2015

ENCORE #20! – Ripples


http://voluume.fr/wp-content/uploads/2012/05/Encore-Sessions.jpgFrom 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 September of 2011...

While my daughter doesn’t often blog on her 20: A Journey of Hope, she does on her other site (http://think.o-my-soul.net/). Currently on the right hand side is her twitterfeed regarding a car accident she and I witnessed.

An elderly woman was driving her very nice car south on Washington Ave, parallel to Interstate 94 at about 4:30 PM. I’d picked my daughter up from Augsburg College where she’d just spent eight hours of attending classes in biopsychology and research methods. Traffic was light. We were chatting.

Many people use Washington to skip the heavy traffic feeding on to the interstate directly from the downtown Minneapolis area. They take it for a short jaunt through the fascinating businesses in the old Warehouse District, then enter the ramp at 22nd by crossing a usually light southbound lane of traffic.

I think she missed the ramp, got on to the next stretch that runs between 26th and Lowry and then, thinking the ramp was there, simply veered into oncoming traffic, looking for the ramp. She said to another bystander that she thought it was the turn on to Lowry she was making (and the Washington was a one way?). At any rate, what we saw was the woman’s car swerve deliberately into two oncoming cars.

My daughter says we experienced vicarious dissonance,a type of vicarious discomfort resulting from imagining oneself in the speaker’s position, leading
to efforts to restore consonance”. In other words, we couldn’t believe that the woman was driving that way because we KNEW that that kind of driving couldn’t happen. We KNEW she should be in the northbound lane.

The resulting head-on collisions destroyed both her car and the badly damaged the other two. I was “first on the scene” and called 911, reported what I saw to police officer in charge after the arrival of two squad cars and a fire truck and my daughter and I moved on to home, deeply shaken.

As I drove, I thought about the accident and the effects it would have. Aside from burning itself into my daughter’s mind – she just got her license a bit over a week ago – and my own, the lives of the people in those cars will be irrevocably affected as well. The young Asian man whose older  model car doubtless carries only collision insurance is now car-less and likely will get piddly cash from the insurance company after endless wrangling over whether he caused the accident or not. The woman in the Volkswagen Beetle will experience the same thing, though by the newness of the car, it likely has more insurance.

And the elderly woman? Will she ever drive again? Will lawsuits (most likely formed by lawyerly vultures wishing to sue everyone in sight and retained by the elderly woman’s wealthy friends, cause the blame to fall on everyone but the woman) be brought, fought and bought? Who brought all of them home? Did the go to the hospital or just go home because their insurance doesn’t pay for something as minor as a non-lethal car accident?

Ripples.

What does a car accident on a Thursday afternoon have to do with breast cancer? Those of you who are THERE can easily guess. Those of you who are not, might consider this: the girlfriend of a good college friend of my daughter; has a mother who was just diagnosed with stage 4 breast cancer.

Ripples, ripples, ripples…

Saturday, September 5, 2015

GUY’S GOTTA TALK ABOUT #18…Living With Surviving Breast Cancer…


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…

Over the next few “Breast Cancer Research” posts, I’m going to be looking at a completely different issue – how did the chemo drugs (heterodyning with diabetes) damage the peripheral nervous system (the PNS) in my wife?

In her, the nerve damage manifests itself as restless limb syndrome (I wrote about it here: http://breastcancerreaper.blogspot.com/2015/01/breast-cancer-research-right-now-29.html) as well as having dead spots on the limbs and in fingers and toes as well. This is above and beyond the nerve damage that came from the actual double mastectomy.

Also going to be looking at the issue of breast reconstruction and “what happens next”. They’ve been in for two years – and they’ve been uncomfortable for her from day 1. As we grow old together, what does that mean for the implants. She pointed out, “I’m not going to get new boobs when I’m 65, 75, and 85!” So what happens? Keep replacing them? Forget it? And what about the other issues surrounding them? We’re planning a long, far trip a few years from now – what does flying time do for the implants? What about lymphedema and flight time?

It’s “funny”, four years ago, I’d have said that the most important thing; the thing that was most on my mind; was my wife surviving breast cancer. Today, the issue that makes me think the most is her living with surviving breast cancer…