Saturday, April 28, 2018

GUY’S GOTTA TALK ABOUT…Alzheimer’s #15: The Wedding Ring



Dad’s diagnosis of Alzheimer’s stayed hidden from everyone until I took over the medical administration of my parents in 2015. Once I found out, there was a deafening silence from most of the people I know even though virtually all of them would add, “My _____ had Alzheimer’s…” But there was little help, little beyond people sadly shaking heads. Or horror stories. Lots of those. Even the ones who knew about the disease seemed to have received a gag order from some Central Alzheimer’s Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this part of my blog…

Dad lost his wedding ring a few days ago.

This time, I searched for it by moving all the furniture and bringing in my industrial flashlight. In the bathroom; under the dorm refrigerator; under the couch – those three were long shots. He lost his wedding ring while fiddling with and seated on the edge of his bed.

It’s a simple ring, actually – something like the one above, though not quite. I couldn’t find an exact copy…

At one time, the sterling silver had been diamond cut, but wearing it for sixty-two years had worn it essentially smooth. It wasn’t fancy and had matched my mom’s wedding ring, which is resting with her now these past twenty months. His had known hard use – construction sites, home repair, auto repair, lawn mowing, deck building, tree planting, driving long distances, touring Europe, running spotlight, discipling children, moving furniture, remodeling, playing softball, drinking beer, holding grandchildren, holding great-grandchildren, and an endless procession of life’s small but meaningful events that called for gripping with a hand bearing a ring that promised fidelity until death stepped in to cause a permanent part.

I don’t know if we’ll find it. We’ve found the wallet and apartment keys that have vanished only to reappear a few days or weeks or months later. But I don’t know this time. It’s such a small thing…

The worst part for me?

For a man whose memory is slipping away, the wedding ring was a concrete reminder of sixty-three years spent with one person with whom he had made more memories than any other person…


Saturday, April 21, 2018

ENCORE #86! – 10 Exercise TIPS for Cancer Folk (and don’t forget the significant others!)

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 December of 2015.

“You should just exercise! It will take away the stress! It will help you heal faster! Exercise will make you better!”

Cool.

Fine. Sign me up for the next Grandma’s Marathon! Running twenty-six miles should be good for at least one chemotherapy session, right?

Exercise…

What exactly does this mean? How do I turn “exercise is good for you” into something I can DO? Oh, and is the “exercise is good for you” mantra only for the loved one with cancer? What about me – who put on something over ten pounds during the chemo sessions and can’t seem to shake the weight now?

The answers to these questions a literally scattered all over the internet, so I’ll try and analyze and condense them here into TEN workable breast cancer treatment and after-treatment practical exercise tips (ALWAYS TALK TO OR CALL YOUR CANCER CARE CENTER BEFORE YOU START ANY KIND OF EXERCISE TO SEE IF IT’S SAFE FOR YOU):

1)      “‘You don't have to be Lance Armstrong,’ stresses Dr. Julia Rowland of the National Cancer Institute, speaking from a survivorship meeting this month that highlighted exercise research. ‘Walk the dog, play a little golf.’” Walk the dog, walk to the end of the block, walk somewhere. Several people recommended finding a neighborhood indoor mall that opens early and walk the perimeter before the stores open. Walk!

2)     “Researchers think exercising together may help both partners stick with it. They also are testing whether the shared activity improves both physical functioning and eases the strain that cancer puts on the caregiver and the marriage.” Walk with a loved one (in my case, ME! I should be walking and exercising WITH my wife. WALKING. Doing DANCE FEVER to an enjoyable music routine. Life weights – or cans of soup if you don’t have weights. A little weight lifted a number of times during a day counts as exercise! Hide the weight in your work locker or in a desk drawer – or leave it out and tell people what you’re doing. You will find a remarkable amount of support.

3)     “For example, Schmitz led a major study that found careful weight training can protect against lymphedema, reversing years of advice to coddle the at-risk arm…” See #2 – lift anything! (By the way, this is called resistance training – the weight “resists” being lifted.)

4)     “…at-home exercises with some muscle-strengthening, plus a better diet, could slow physical decline.” There are dozens of DVD exercise programs. If you can’t buy one, check one out from your local library or ask to borrow one from a local gym, YMCA or school. Do as much as you can, then stop. (See #1 above!) Also, lifting the DVD into the player is exercise! Here’s the address for a DVD specifically for breast cancer survivors: http://www.strengthandcourage.net/

5)     Arms at your side, hold a towel in both hands. Using the unaffected arm, pull the other behind the back. Alternate Pain is to be respected and the stretch should be held to the point of discomfort not pain .The stretches should be held from 5-10 seconds at first, gradually increasing the length of time. It’s better to do this several times during the day, rather than all at once. With arms bent (on either side of the head), hold a towel in both hands. Using the unaffected arm, pull the other behind the head.

6)      “If lymphedema is a concern, you…should be fitted with a sleeve which is worn while exercising especially when lifting weights. Progress…slowly and start with a light weight – ONE pound is just fine.”

7)     Walking and cycling are quite beneficial as are swimming, cross training, or aerobics. It is best to begin with a 5-10 minute walk to judge...if a long period is too much, multiple shorter aerobic sessions are fine. Your goal will be to gradually increase the time period engaged in aerobic exercise and to slowly increase your exercise tolerance.

8)    Doing yoga can provide flexibility benefits as well as instruction in stress reduction techniques that can prove beneficial. [I know nothing about yoga, so start with a library visit or a YouTube video: http://www.youtube.com/watch?v=H3vLZqPZxZE]

9)     Yep, I’m sayin’ it again:Walking, a common fitness choice, offers the benefits of aerobic exercise without overly straining the body. According to a 2005 study in the Journal of the American Medical Association, the benefits of walking peak when a breast cancer patient or survivor walks 3 to 5 hours weekly at a pace of 2 to 3 miles per hour.”

10) Find a swimming pool and join a waterobics class; if you can’t join a class, get this CD: http://www.maryessert.com/bcr.htm This site lists the exercises and exactly how to do them!

Image: https://c2.staticflickr.com/6/5527/10893068965_1d328e8f71_b.jpg

Saturday, April 14, 2018

GUY’S GOTTA TALK ABOUT #41…Gilda’s Club & New Directions


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…

I haven’t said much about Gilda’s Club because after my brief interest, I found I really didn’t have time to do much with the information.

A week or so ago, Gilda’s Club Twin Cities reached out to the local school districts, inviting someone from the district to attend Imagine A Place Breakfast, A Free Fundraiser to Benefit Gilda’s Club (http://www.gildasclubtwincities.org/news/imagine-a-place-breakfast-thursday-april-26/) “…we regularly get calls from schools asking how we can provide support when a student, teacher, or staff member is impacted by cancer. In the next few years, we will be more fully developing our children, teen, and family programming. As part of this, we are looking to work closely with local school districts to create awareness of our program as a community-based resource. Additionally, we are developing creative programs such as a teen essay contest as well as a “Gilda on the Go” program that will take elements of our program out into the community, with schools being a key partner…I am inviting leadership from the surrounding school districts to our Imagine a Place Breakfast…it is also a powerful hour of inspiration and education to learn more about the psychosocial impact cancer has on our community and how Gilda’s Club addresses these needs…I thought this might be ideal timing to learn about our local resource…We would love for you and/or individuals from the Robbinsdale School District to attend to learn more.”

I had never heard of Gilda’s Club until a few years ago, when my daughter interviewed there for a position as a sort of “field test” or “pre-internship” in her master’s degree program in art therapy.

According to Wikipedia, “Gilda's Club was founded by Joanna Bull, Radner's cancer psychotherapist along with Radner's widower, Gene Wilder (himself a cancer survivor) and broadcaster Joel Siegel (who died after a long battle with the disease). The first club opened in New York City in 1995, after a long fundraising campaign that included movie trailers featuring Wilder in theaters around the country. The organization took its former name from Radner's comment that cancer gave her "membership to an elite club I'd rather not belong to".”

My first reaction was, “WHERE THE F…WAS THIS PLACE WHEN WE STARTED THE HIDEOUS JOURNEY THROUGH CANCER?”

Yeah, my reaction, in my head, really WAS that strong.

The main reason we didn’t know about it was that it wasn’t here. Gilda’s Club opened here in 2014. We started our journey in March of 2011. We’ll be “celebrating” the fifth anniversary of that date this year.

I confess, I still have bitter (VERY) feelings about the lack of support we got at the beginning. My daughter shared something of the same sense after she started working at Gilda’s Club a few weeks ago. In fact, she mentioned that this experience AS a therapist intern might actually BECOME therapeutic for her.

It’s still been a lonely slog. I KNOW I have nearly 50,000 hits here over the past seven years, yet I still don’t talk to any other “male caregiver” about the journey. Even though one of the men I work with and chat with on occasion is also a “male caregiver”. The atmosphere at work isn’t conducive to talking at depth, even though I am, ironically, a counselor!

And so I continue on pretty much in silence, except for these blog entries.

Anyway, it’s GOOD to know that others won’t have to go it alone anymore. Gilda’s Club has twenty-something affiliates in places like New York, Chicago, Seattle, Palm Desert, Fort Lauderdale, Davenport, and besides here, another fifteen or so places. If you want a place near you, click on the link below in Resources. If you’re in the Twin Cities, email me and I can give you a little bit of info.

I’d like to try going to GC, but I still haven’t decided if I want to wallow in my bitterness a little longer or maybe find other men willing to talk about being a caregiver of a breast cancer survivor. I’ll keep you posted.

I’ll be going to the breakfast with the intent of getting the tools necessary for me to create a Fight Cancer group at the high school I work at (I was thinking of using a different name, but I’m pretty sure Admin wouldn’t much care for it, though I think we can call it that among ourselves (You might want to read this to get the gist of my true feelings… http://breastcancerreaper.blogspot.com/2016/03/guys-gotta-talk-about-23f-cancer.html)

Again, I’ll keep you posted!


Saturday, April 7, 2018

ENCORE #85! – Diabetes = Peripheral Neuropathy, Chemotherapy = Neuropathy…What If You Have BOTH?


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 September of 2015.

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?

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!!!!!”