GUY’S GOTTA TALK ABOUT #40…Adjusting My Focus On Breast Cancer, But Losing Focus On My Wife…

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…

When I started this blog, my wife’s breast cancer diagnosis was at the forefront of both mind and effort. Every waking moment was a slog through pre and post op appointments, chemotherapy, recovery, worry, and such a bewildering and blinding flood of light, that likening it to being struck by lightning is an apt metaphor.

Everything we had and did was focused not only on treating the cancer and recovery, but on recovering our “old life”; which morphed into learning to live with a new normal; which became coping with the aftermath, which has finally segued into “life”.

My wife will NEVER be the person she was “before” she was diagnosed with breast cancer in March of 2011. That was now seven years – and 352 blog entries – ago.

My intent broadened from the week-to-week challenges she faced following the diagnosis. I’ve learned more than I ever imagined I could about breast cancer, and along the way watched as various people I love and care for – including myself – felt the cold touch of cancer on their lives.

It’s funny, when I first started the blog, I wanted to call it Breast Cancer Reaper, and had chosen the picture above for it:  http://img0.etsystatic.com/il_170x135.112225675.jpg

As cute and expressive as it was, and while that remains the name of my URL, I backed off to my Guy’s Gotta Talk About title. As time went on, my wife moved from surgical recovery, to chemotherapy, to living with the end results of chemo, to the brutal discovery of lymphedema. That struggle still haunts us. Cancer still haunts us, though I don’t know anyone who is currently struggling with the initial stages. We’ve joined Relay For Life in the school district in which I work, and I spoke during one of those events.

But life continues to move forward and new challenges rear up from unexpected places. Alzheimer’s in my dad is one of my deepest concerns now.

My problem is that I have too many foci at this time and I’ve LOST focus on what’s most important: my wife.

That’s something I’ve only discovered in the past few weeks, much to my terror and shame. So…what do I do?

Shift the focus back to where it should be: the love of my life. My wife.

Sorry, love. Please accept my heart again, which you’ve never once relinquished. I will take yours back and put it back to where it belongs – next to mine.

I WILL this.

Image: http://wrex.images.worldnow.com/images/23784252_SA.jpg

ENCORE #81!: Take Tamoxifen for TEN Years Instead of Five!

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 March of 2015.

One of my favorite movies is GALAXY QUEST.

In it, characters from a defunct STAR TREK-act-alike TV show are thrown into a real world alien conflict and expected to be the parts they acted…

At one point, Sigourney Weaver (who plays Gwen DeMarco who plays Lt. Tawny Madison) and Tim Allen (who plays Jason Nesmith who plays Captain Peter Quincy Taggart) have to cross through metal chompy crusher things and then run over a one-foot wide bridge that passes over an endlessly deep hole that is windy…all while aliens are trying to kill them with phasers.

Sigourney Weaver stops and utters an expletive that is VOCALIZED as “Screw this! The sucker who wrote this scene should die!” If you watch her lips, she utters quite a different expletive…

After hearing my wife’s reaction to the recommendation by the American Association of Cancer Research, I might have heard one expletive – but I’m pretty sure the one she was thinking was akin to the one in GALAXY QUEST.

Why?

First: What does tamoxifen do? Some breast cancer cells require estrogen to grow. Estrogen locks on to a cancer cell in certain places and helps it grow. When a person takes Tamoxifen, it’s broken up into parts that lock into the same places that estrogen does – but they STOP the cancer cell from growing. “…tamoxifen acts like a key broken off in the lock that prevents any other key from being inserted, preventing estrogen from binding to its receptor.”

There is also a second  methodology for treating breast cancer that is NOT being changed at this time and that is the use of aromatase inhibitors that work by stopping the production of estrogen. [This is the drug regimen my wife is following at present]: Anastrazole is called an aromatase inhibitor whose primary problem is that it weakens bone structure; though it CAN cause: “Constipation, diarrhea, nausea, vomiting, upset stomach, loss of appetite, body aches and pains, breast swelling/tenderness/pain, headache, dry mouth, scratchy throat, increased cough, dizziness, trouble sleeping, tiredness/weakness, hot flashes/hot flushes, vaginal bleeding, hair thinning, and weight change can occur…mental/mood changes, numbness/tingling/swelling of the hands or feet, persistent cough, unusual vaginal discharge/burning/itching/odor, unusually stiff muscles, pain/redness/swelling of the arms or legs, vision changes, bone pain, bone fracture, signs of infection…”; Letrozole can cause “hot flashes, hair loss, joint/bone/muscle pain, tiredness, unusual sweating, nausea, diarrhea, dizziness, sleeping trouble, (unlikely) bone fractures, mental/mood changes, swelling of arms/legs, blurred vision…(rarely) blood clots.”

Any time a drug is taken, its purpose is to change the body in some way – INTENTIONALLY for the better, but there are almost always side effects. With tamoxifen, the main ones are: hypercalcemia (A higher-than-normal level of calcium in the blood [causing] loss of appetite, nausea, thirst, fatigue, muscle weakness, restlessness, and confusion…constipation, form a heart block, lead to calcium stones in the urinary tract, impair kidney function, and interfere with the absorption of iron)…as well as causing “hot flashes, nausea, leg cramps, muscle aches, hair thinning, or headache…(unlikely) vision changes (e.g., blurred vision), eye pain, easy bruising/bleeding, mental/mood changes, swelling of ankles/feet, unusual tiredness.”

While it is TRUE that taking tamoxifen DOES lower the risk of breast cancer recurrence, it seems to me that researchers should CONTINUE to find new ways of dealing with this devastating disease!

References: http://www.rxlist.com/arimidex-drug/consumer-side-effects-precautions.htm, http://www.rxlist.com/femara-drug/consumer-side-effects-precautions.htm

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

Encouragement (In Suffering, Pain, and Witnessing Both…) #1: Sometimes We All Need Someone To Tell Us, “You are loved…”

The older I get, the more suffering and pain I’ve experienced; and the more of both I stand witness to. From my wife’s (and many, many of our friends and coworkers) battle against breast cancer; to my dad’s (and the parents of many of our friends and coworkers) process as he fades away as this complex disease breaks the connections between more and more memories, I have become not only frustrated with suffering, pain, and having to watch both, I have been witness to the suffering and pain among the students I serve as a school counselor. I have become angry and sometimes paralyzed. This is my attempt to lift myself from the occasional stifling grief that darkens my days…

My favorite author, CS Lewis both understands suffering – his mother died of cancer when he was 10 – the same year his grandfather and uncle also died; he fell gravely ill two years later with a respiratory infection; eight years later, he was wounded in WWI; his father, the woman to whom he was married only a short time before she died of cancer – and has struggled through to revelations about God that uniquely qualify him to make some statements on the subject.

In his fourth book, THE PROBLEM OF PAIN, he points out, “‘The problem of reconciling human suffering with the existence of a God who loves, is only insoluble so long as we attach a trivial meaning to the word ‘love’, and look on things as if man were the centre of them. Man is not the centre. God does not exist for the sake of man. Man does not exist for his own sake. ‘Thou hast created all things, and for thy pleasure they are and were created.’ We were made not primarily that we may love God (though we were made for that too) but that God may love us, that we may become objects in which the divine love may rest ‘well pleased’.”

I don’t want to give anyone the idea that I think my suffering greater, worse, more noble, or more ennobling than anyone else’s suffering.

All I intend to do in these essays is share things that have helped me either feel better, make sense of, or given me pause to think and consider my suffering in the light of the suffering and pain experienced by those outside of the wealth and privilege I live in.

Lewis has brought me both profound joy; and forced me to think profound thoughts. I have, I think passed on a bit of that joy to my own kids, and when I introduce my grandchildren to the CHRONICLES OF NARNIA (my own introduction to Lewis via my great-aunt, Leola Danielson), I’ll be passing the legacy of Lewis’ joy and profundity to another generation still.

The reason I picked this?

I find it powerfully comforting in light of my dad’s Alzheimer’s decline and my wife’s fight against breast cancer – as well as the pain I see every day in the lives of the students in the high school I serve in as a counselor – to realize that my JOB is not to love God. It’s to BE loved by God:

“We were made not primarily that we may love God but that God may love us, that we may become objects in which the divine love may rest ‘well pleased’.”

God doesn’t require me to work hard to “love him”. There were times in my wife’s suffering that I couldn’t POSSIBLY love God enough. There are times now as I watch my father fade away, that I can’t POSSIBLY love God.

I don’t have to do anything to simply be an object “in which the divine love may rest ‘well pleased’.”

Resources: http://www.cslewis.org/resource/chronocsl/; THE PROBLEM OF PAIN (1940, The Centenary Press)

Image: http://www.quoteambition.com/wp-content/uploads/2017/04/encourage-quotes-destiny.jpg

ENCORE #80! – Dealing With Restless Limb Syndrome…

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 January of 2015.

First of course, the definition: “Restless legs syndrome (RLS) also known as Willis-Ekbom disease (WED) or Wittmaack-Ekbom syndrome, is a neurological disorder characterized by an irresistible urge to move one's body to stop uncomfortable or odd sensations. It most commonly affects the legs, but can affect the arms, torso, head, and even phantom limbs. Moving the affected body part modulates the sensations, providing temporary relief.”

Once again, this is something my wife has struggled with. But instead of breast cancer causing it, it has exacerbated it. She’s had RLS her whole life (at least since she was six years old!) Breast cancer – double mastectomy, aggressive tri-weekly chemotherapy (Taxotere + Adriamycin + Cytoxan and the next day, neulasta), followed by five years of anastrazole – just made it...weirder.

I first experienced when we got married. At night, before falling asleep, she would move her legs in order to “short-circuit” the odd sensations. That seemed to work. Then the cancer diagnosis and treatment and as of right now, it has manifested itself by odd sensations in her LEFT arm. This is odd because the removal of sentinel nodes and the resulting lymphedema was in the RIGHT pit and arm (sounds like a medieval British pub, doesn’t it...).

Current research suggests “...exercise, avoiding RLS precipitants (caffeine, alcohol, antidepressants, antihistamines); exercise; counter stimulus to sensory symptoms (hot or cold baths, limb massage, compression stockings, counter-pulsation devices); herbal medicines and acupuncture; and cognitive behavioral therapy.”

Her first “go to” was to up her calcium intake: “Dehydration, prolonged sitting, or not getting enough potassium, calcium or magnesium in your diet can be associated with leg cramps. So can certain medications -- including diuretics, beta blockers and other blood pressure drugs. Sometimes, these cramps also may be related to an underlying metabolic condition, such as an underactive thyroid (hypothyroidism) or a parathyroid condition. Diabetes or other conditions that disrupt your metabolism can also cause muscle cramps.”

The calcium chews she’d been doing were originally to counter the bone debilitation caused by the chemotherapy, so she stopped for a while. The RLS increased and now she uses the calcium chews as well as a hot water bottle to lower the intensity of the sensations.

As I wrote earlier, we’ve also started a regimen of exercise together – alternating strength training (after a visit with the Planet Fitness trainer) and cardio – we usually do a half an hour of stationary biking. The hot water bottle was a “new development” and has been remarkably effective.

I’ll note here something we HAVE NOT tried, but is a recent development: “In 2014, the FDA approved a device that provides electrical stimulation to the legs as a non-medication treatment for restless legs syndrome. Studies suggest this treatment can be quite helpful. Although it is generally well tolerated, it occasionally causes a temporary worsening of symptoms, leg cramps, soreness and motion sickness.” My guess is that this is an outgrowth of the device developed for those who suffer from chronic pain, what’s called Microcurrent Electrical Therapy.

Taken all together, the “therapies” seem to be working for the time being. It’s also light years better than adding ANOTHER pill to her already abundant storehouse!

Resources: http://effectivehealthcare.ahrq.gov/index.cfm/search-for-guides-reviews-and-reports/?productid=1328&pageaction=displayproduct, http://articles.chicagotribune.com/2012-04-13/lifestyle/sns-201204131600--tms--mayoclnctnmc-a20120413apr13_1_leg-cramps-restless-legs-syndrome-calf-muscles, https://www.intelihealth.com/article/restless-legs-syndrome

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

BREAST CANCER RESEARCH RIGHT NOW! #59: Lymph Node TRANSPLANT!

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…

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: Lymph Node Transplant…

The process of transferring lymph nodes from various parts of the body has been going on for nearly ten years now with varying rates of success.

Let me be clear before I go any further, according to the most recent article I could find, most of the patients experienced a decrease in the dimensions of the lymphedema-affected limb. The most successful transfers happened in the arms; less successful were the transfers affecting lymphedema of the leg.

Even though the transfers were successful, THIS WAS NOT A MIRACLE CURE!

Swelling in the arm was at best reduced by “…29.1% (Stage II) and 17.9% (Stage III) (P < 0.05).” To give you a reference point, my wife’s current arm swelling is 40 cm around (at the bicep). Depending on the stage she’s in, that would be a reduction from 40 cm to (Stage II) 40 cm – 11.64 cm = 28.36 or (Stage III) 40 cm – 7.16 = 32.84. Let’s say that a successful lymph node transfer would result in the arm going from 40 cm around to 30 cm around. In the case of my wife, the affected arm would still be slightly larger than the unaffected arm, BUT the difference would be less noticeable. My wife asked about the stretched skin from the lymphedema, but I will need to do research on THAT subject at a later time.

HOW is it done?

From the article referenced below: “…functioning lymph nodes were transplanted from the outer groin area [other possible sites for node removal include the base of the neck; around the stomach; around the intestines; or those around the appendix then]into the wrist…[the] transfer surgery is done through an incision…with the aid of loupe magnification…then the targeted lymph nodes [are] carefully dissected out, along with the veins and artery and some surrounding tissue…blood vessels [a]re reconnected under microscopic magnification…”

After the surgery is completed – and the person in this article said it was “painless”, though I can’t imagine how it could be! – “…the transplanted lymph nodes are reestablished…acting as a physiological ‘sponge’ to drain the excessive lymphedema fluid…[in]to [nearby veins]...”

The study reference below was published in November of 2017 and included some 80 or so patients with lymphedema. It didn’t specify in the abstract how many of them had suffered from breast cancer. I can only imagine that SOME of them had.

The third article referenced was published in July of 2016. Even so, it states clearly: “Although results are promising, VLNT is relatively new and thus still in the exploratory stage…we do not know exactly which subset of patients with lymphedema will benefit most from the procedure. In order to tease out these answers we need ongoing, coordinated outcomes reporting, basic science research on mechanisms of action in VLNT and an increased understanding of the pathobiology of lymphedema.”

Hopeful? ABSOLUTELY! But still not a panacea – a cure all – for those suffering lymphedema.

Resources: http://www.health24.com/Medical/Cancer/News/first-lymph-node-transplant-for-cancer-patient-a-success-20171023, https://www.cancercenter.com/video/treatments-technology/vascularized-lymph-node-transfer/, https://www.ncbi.nlm.nih.gov/pubmed/27270748, https://consultqd.clevelandclinic.org/2016/07/qa-vascularized-lymph-node-transfer-lymphedema-cancer/

Image: https://static1.squarespace.com/static/51c16910e4b014f2c800eb39/t/5262c442e4b04c04f40cf61f/1409593462984/VLNT+Israel.png

ENCORE #79! – Weight Training Can HELP Stop Or Reduce Lymphedema

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 on 11/2/2014. (http://www.breastcancer.org/research-news/exercise-program-successful-in-life)

Exercise and breast cancer – at first thought, you might say, “What!!!!!” The implication of a breast cancer diagnosis or treatment, brings to mind hospital beds, recuperation, and convalescence.

Not hitting the weight room!

But this study, while it’s neither large nor longitudinal for more than a year, seems to indicate that gentle weight training has a good chance of either preventing the occurrence of lymphedema or reducing it.

We’re NOT talking pumping iron, here folks! In the words of the study: “As in PAL [Physical Activity and Lymphedema Trial], the researchers found that the Strength After Breast Cancer program didn’t increase the risk of lymphedema and helped ease lymphedema symptoms. The women were also stronger at the end of the program and felt better about their bodies.”

Does this mean you have to join a gym and get into those leotards and exercise?

Not necessarily. Simply returning to moderate exercise after breast cancer treatment and surgery is GOOD: “...one study found that women who followed a slow, progressive strength-training program lowered their risk of developing lymphedema by 35 percent; women who had at least five lymph nodes removed and started lifting weights reduced their risk by 70 percent.”

                                                                                                                                 

As well, the article goes on to talk about other aspects of exercise after breast cancer and as always, do so with your doctor’s knowledge and under her supervision. Even so, “Increased physical activity after cancer treatment has been consistently linked to better physical function, reduced fatigue, and bodily pain...Compared to sedentary women, regular exercisers, who have been diagnosed with breast cancer, have a much lower risk of breast cancer recurrence, breast cancer death, and all causes of death.”

And NOT just the wives/girlfriends/moms/sisters, gentlemen! We need to exercise as well to maintain our health and support our women!

Capisce? (From Neapolitan capisci, the second-person present-tense form of capire (“to understand”), from Latin capere (“to grasp, seize”).)

Resource: http://www.acefitness.org/acefit/fitness-fact-article/3320/exercise-for-breast-cancer/

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

GUY’S GOTTA TALK ABOUT…Alzheimer’s #13 – Research Into Diabetes Leads To Possible Treatment for Alzheimer’s!

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…

I’ll also be trying to keep up with current research in Alzheimer’s treatments as well as research into understanding exactly what the diseases does…and I’ll be looking HARD for research on Alzheimer’s prevention – as that one has some real importance for me and my siblings.

Today, I’ve found some hopeful research on “curing” the disease. Mind you, it’s ONLY in the mouse-testing phase, but given the number of people suffering from it, it would seem to me that finding a way to prevent Alzheimer’s from occurring in the first place would be high on SOMEONE’S research list.

Here’s the actual, untranslated abstract (sort of like the summaries we had to do in middle school about the books we read):

“Type 2 diabetes mellitus (T2DM) is a risk factor for Alzheimer disease (AD). Previous studies have shown that the incretin hormones glucagon-like peptide-1 (GLP-1) and glucose-dependent insulinotropic polypeptide (GIP) that have anti-diabetic properties show very promising effects in animal models of AD. Glucagon (Gcg) is a hormone and growth-factor, and the Gcg receptor is expressed in the brain. Here we test the effects of a triple receptor agonist (TA), which activates GLP-1, GIP and glucagon receptors at the same time. In the present study, the effects of the TA were evaluated in the APP/PS1 transgenic mouse model of AD. The TA was injected once-daily (10 nmol/kg i.p.) for two months. The results showed that treatment with TA significantly reversed the memory deficit in the APP/PS1 mice in a spatial water maze test. Moreover, the drug reduced levels of the mitochondrial pro-apoptotic signaling molecule BAX, increased the anti-apoptotic signaling molecule Bcl-2 and enhanced the levels of BDNF, a key growth factor that protects synaptic function. Levels of synaptophysin were enhanced, demonstrating protection from synaptic loss that is observed in AD. Neurogenesis in the dentate gyrus was furthermore enhanced as shown in the increase of doublecortin positive cells. Furthermore, TA treatment reduced the total amount of β-amyloid, reduced neuroinflammation (activated microglia and astrocytes), and oxidative stress in the cortex and hippocampus. Thus, these findings show that novel TAs are a promising lead for the design of future treatment strategies in AD.”

Like I used to do for my wife’s breast cancer diagnosis and treatments, I’m going to make an attempt to translate this. [To lend a little bit of credibility: I have a BS in Biology and an MS in School Counseling. I have been a science geek since I was a teenager, I love language, and I read and understand technical papers in both fields. Science is full of jargon – but all jargon is, is an attempt to communicate something as precisely as possible. You can probably find someone else to translate for you, but they’d need more schooling than I’ve had…]

The abstract begins by saying that people who are Type 2 diabetic (This means that they started having insulin problems AFTER adolescence. Type 1 diabetics were called “juvenile onset” at one time) have a higher risk of getting Alzheimer’s. It’s not a guarantee (and my dad wasn’t diabetic), but there’s an increased risk there.

The researchers made a “cocktail” of three different hormones that would lock into the brain

Research has shown that two hormones that prevent people from becoming diabetic, ALSO appears to protect people from developing Alzheimer’s. In the abstract, they name the hormones, then abbreviate them, then continue to use LOTS of abbreviations (for example, AD = Alzheimer’s Disease).

One of the hormones contributes to growth in the human body. When the hormone travels to the brain, there is a SPECIFIC site that it can hook into that is there; the hormone can then signal the brain to grow more nerve cells that connect you to your memories. The other two are the ones that protect the body from becoming diabetic.

The researchers injected a mixture of the hormone and diabetes protectors into mice every day for two months. At the end of that period, a NUMBER of really good things had happened!

First of all, the treatment reversed memory loss! Moreover, the drug reduced the molecule that makes a brain cell commit suicide and increased the amounts of molecules that both stop the brain cell suicide and created TWO chemicals that stimulates growth and a chemical that protects the nerves from attack by the molecule that starts the cell-suicide process.  It also acts on a part of the brain called the “hippocampus” (I know, sounds like a place where zoo animals go to school). It causes the growth of new nerves in a place called the “dentate gyrus” (NOT someone who meditates on dentures), a place the guides the “formation of new episodic memories, the spontaneous exploration of novel environments, and other functions.” The injections reduced the amount of brain plaque that has become associated with Alzheimer’s, and finally made the swelling in the lining of the nerves go down.

All-in-all, the research delivered a lot of what researchers are looking for. HOWEVER – this is at the “injecting mice stage”. It’s a long, long way away from the “Hey, Doc! Can I get me a set of those daily injections so I can get my memory back?” In other words, this research won’t lead to a competitor for PREVAGEN (a miracle drug (ABSOLUTELY NOT BEING SERIOUS HERE!!!). It’s years from being a real, clinical treatment.

Then again, it’s way better than the bad news we’ve been feasting on since the first attempt to deal with the beta-amyloid plaques and Tau protein tangles the first Alzheimer’s drug tried to attack in 1987…three decades ago.

I’m not going to hold my breath. As with any research on finding a cure for any disease or condition, much remains to be seen.

Resource: http://www.sciencedirect.com/science/article/pii/S0006899317304596?via%3Dihub

Image:  http://az616578.vo.msecnd.net/files/2016/06/25/6360242025150255191939281878_Alzheimer-disease-patients.jpg