ENCORE! #176! – Lymphedema -- Another "For-the-Rest-of-Your-Life" Thing...

From the first moment my wife discovered she had breast cancer in March of 2011, there was a deafening silence from the men I knew. 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 first appeared in February of 2012…

Once the surgery was over and the “main” healing begun, we talked with my wife’s cancer care team and they introduced us to lymphedema.

First of all, “What is lymphedema?”

Let’s begin with an overview of the body system affected by this. Lymph is a clear fluid that lies in between the cells of the body. It’s there to feed the cells and to carry away waste. It comes from the blood itself and (to put it as simply as possible), “leaks” out of the tiny vessels that carry blood. It leave the red blood cells behind and if it were not cleared out, it would cause a massive amount of swelling.

Another system of vessels call the lymphatic system, “vacuums up” that lymph and carries it back to the heart.

HOWEVER, where the circulatory system as the heart to push the blood around, the lymphatic system HAS NO HEART!

The only way to lymph can move around is by you and I moving. The movement of our muscles presses the lymph into the collection spots called the lymph nodes. These nodes are a gathered at very specific points in our bodies – the places where we move the most, the joints. Behind the knees, in the groin, the elbows, the armpits, the neck is where you’ll find large clusters of nodes. In addition you can find nodes in the lungs, underneath the chest muscles, along the spine as well as numerous other places in the body.

These nodes not only collect lymph to pass it back to the heart, they are also places where white blood cells made in the bone marrow, thymus, spleen and tonsils are gathered to be redistributed through the bloodstream to fight disease in the body.

The nodes are vital in moving the lymph fluid around and when some are removed during a mastectomy, the ease with which lymph can be moved is weakened. Even though there are still nodes under the muscles and in places besides the nodes – and so removal doesn’t instantly STOP the movement of lymph – it does reduce how much lymph can be moved around.

You probably already know that white blood cells fight disease. They also fight infections as well. When you get a cut or have surgery, white blood cells are moved by the body through the blood stream to the wound and often times leave the bloodstream to fight the infection. Once the infection is past, the white blood cells need to be transported back to the heart to go back into the bloodstream again.

When nodes are removed through surgery (or other damage or illness), the process takes much longer to “clear out” the white blood cells and the other extra fluid that the wound or damage caused. Because blood never stops flowing at its regular rate, fluid is still NORMALLY leaking out between cells. When you add the normal fluid leakage to the extra fluid and white blood cells from an infection, you get too much fluid in one place. This is called lymphedema (lymph of course, is what we’ve been talking about here; “edema” is a Greek word that means “to swell”).

The second question is: “What can I do about it?”

Lymphedema is treated by pushing the extra fluid back to where it belongs by helping the muscles and lymph nodes that are missing. Often this involves using massage as well as a compression garment: “The most common treatments for lymphedema are a combination of manual compression lymphatic massage, compression garments or bandaging.” Regular exercise is also helpful (see last week’s article on exercise: http://breastcancerreaper.blogspot.com/2012/01/10-exercise-hints-for-cancer-folk-and.html for some pointers!)

This is very straightforward, does not appear in any of the reading I did to be something to PANIC about…it does however require an awareness of what’s happening in your body and how to deal with it!

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

RELATED MEDICAL ISSUES RIGHT NOW! #5: RACIAL DISPARITIES IN ALZHEIMER’S AND BREAST CANCER SCREENING AND TREATMEN

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…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: Racial and Socioeconomic Effects on Breast Cancer and Alzheimer’s diagnosis and treatment.

If we just take a moment to look at the world today, and the racial and socioeconomic disparities (= MAJOR differences) in how black, Latino, and Asian people are both tested for COVID-19; treated for COVID-19; and how they have been neglected in outreach by cities, states, and the Federal government – and it’s easy to imagine that the same major difference would exist in the screening and treatment for breast cancer and Alzheimer’s.

The research would easily bear out that assertion – IOW, it’s totally true. Black, Latino, and Asians have neither received the same screening opportunities nor the same treatment for breast cancer and Alzheimer’s when compared to whites.

Below you’ll find links to some of the research – and my translating comments – regarding this frustratingly common issue.

“Among the 55 678 breast cancer screenings in April to December 2019: 45,572 patients were White (about 82 percent); 54,620 patients lived in cities (98 percent), and 22 761 had their own insurance (41 percent).

“From 2019 to the same period in 2020, only half of the people who had the year before were screened! From 2019 to 2020 for women there were 64 percent fewer Hispanic who came in for BC screening. 61 percent less American Indian/Alaska Native women came in for BC screening. 55 percent fewer Asian women came in, and 54 percent less Black women were screened. The number of white women only dropped by 49 percent. Women living outside of the big cities came even LESS than city women. Finally, women who self-paid for treatment and who were insured by Medicaid experienced the largest reduction in screening.” In brief, poor women and indigenous women of color got screened for breast cancer, during COVID-19, less than their white counterparts. Those worst off? Women without insurance who lived in the country.

It MUST be different for Alzheimer’s, right? All cultures respect their elders and want to take care of them!

“Findings from two national surveys appearing in the Alzheimer’s Association report reveal that…more than 36 percent of Black Americans, 18 percent of Hispanic Americans, and 19 percent of Asian Americans (19%) believe that discrimination would be a barrier to receiving Alzheimer’s care.”

Worse still, “In addition, half or more of non-White caregivers say they have experienced discrimination when navigating health care settings for their care recipient.” This I can attest to witnessing myself. BOTH of my parents and the white care staff at the facility my parents stayed in as they deteriorated from complications of congestive heart failure (Mom) followed by age-related dementia; and Dad, who was diagnosed with Alzheimer’s six years before he died…behaved in the way cited by the study. (Linked below)

As a rule, “…health and socioeconomic disparities and systemic racism contribute to increased Alzheimer’s and dementia risk in communities of color. According to the report, older Blacks and Hispanics are disproportionately more likely to have Alzheimer’s and other dementias. In addition, both groups are more likely to have missed diagnoses than older Whites.”

Perhaps the saddest statistic I came across while reading these is this: “More than one-third of Native Americans and nearly 3 in 10 Hispanics do not believe they will live long enough to develop Alzheimer’s or another dementia."

Wow…outside of the white community, we have a long, long way to go in learning how to deal with Breast Cancer and Alzheimer’s issues…

Resources: https://www.sistersnetworkinc.org/index.html , https://www.alz.org/media/Documents/alzheimers-facts-and-figures-special-report.pdf, [A website specifically targeted to Black women and breast cancer]: https://www.sistersnetworkinc.org/index.html,
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2780067, https://www.alz.org/news/2021/new-alzheimers-association-report-examines-racial
Image: https://cdn.mos.cms.futurecdn.net/zsbWK9QgLFjUJwawbWaYnW-970-80.jpg.webp

ENCORE #175! – All Quiet On The Western Front

From the first moment my wife discovered she had breast cancer in March of 2011, there was a deafening silence from the men I knew. 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 first appeared in July of 2012…ten years ago.

Like most of you, I recognized this blog title as the name of an old book – maybe an old war movie.

I’d assumed it was about World War II, I suppose because that’s the war I’m “familiar” with.

It’s neither and it fits even better my current state of mind.

The main characters of the book are German boys sent to the Western Front – the leading edge of the German invasion into France and a place where the war essentially “stopped”. From its closest approach to Paris in September of 1914 to the position the Allies pushed them back to 1916 and where the war stagnated, little of import happened there. That is the thrust of the book. From the ground, when you are young and the horrors of war can’t possibly match anything you’ve ever seen, “nothing happens”.

The problem is that while nothing appears to change on the Front, nothing also changes back home. When you return home, while everyone is glad to see you and everything is just as you left it – you are no longer the same person who went to war. You have seen things you can’t even explain to those who remained behind.

In the book, ALL QUIET ON THE WESTERN FRONT, the main character, Paul Bäumer is a soldier who—urged on by his school teacher—joined the German army shortly after the war began, and who is all of nineteen years old. Some time later, Paul visits on leave to his home which highlights the cost of the war on his psyche. The town has not changed since he went off to war; however, he finds that he does ‘not belong here anymore, it is a foreign world.’ He feels disconnected from most of the townspeople…not understanding ‘that a man cannot talk of such things.’”

I can understand something of that feeling.

While the breast cancer threat has disappeared, we no longer have to go to chemotherapy sessions and the imminence of the cancer has seemingly faded; it’s not gone from my mind. I am still worried. I still wonder. When I rub my wife’s head, touching the soft hairs that have grown back in the months since chemo ended, everything seems so peaceful.

Everything seems “over”.

But it’s not and I can’t explain that it’s NOT over to people who only ask occasionally now, “How’s your wife?” Some of it is that I don’t have the time to talk about my fears of MBC or the long-term effects of the estrogen-blocking drug she has to take. Some of it is that I don’t want people to think I’m whining and say, “Oh, get over it! She’s fine now! The drama’s over!”

Some of it is that while the drama isn’t on stage any more under the bright lights and makeup, it continues in the body. It continues in my mind. It makes me say things like, “Liz is three-and-a-half-months cancer-free!” and smile and high five people.

It makes me feel things like I do “not belong here anymore, it is a foreign world...a man cannot talk of such things.” I suppose I’m also afraid that I’m “weird” in that I’m not “over it”; or that someone might just look at me and say, “Man! Get over it!”

I’m pretty sure now, nearly a year after the initial diagnosis, that I will never “get over it.”

And, on January 15, 2022, I haven’t…

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

ALZHEIMER’S RESEARCH RIGHT NOW! #17: Can Artificial Intelligence (AI) REALLY Help Diagnose FUTURE Alzheimer’s Patients?!?!?!????

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: Artificial intelligence accurately predicts who will develop dementia in two years

While this may not seem to be particularly “earth-shaking”, it has some interesting

potential.

According to the article: “Artificial intelligence can predict which people who attend memory clinics will develop dementia within two years with 92 per cent accuracy, a largescale new study has concluded.”

Couple of things here – what’s a “memory clinic”? From the article: “…people who attended a network of 30 National Alzheimer's Coordinating Center memory clinics in the US. The attendees did not have dementia at the start of the study, though many were experiencing problems with memory or other brain functions. In the study timeframe between 2005 and 2015, one in ten attendees (1,568) received a new diagnosis of dementia within two years of visiting the memory clinic.”

So, what the heck’s a “memory clinic”???

It appears to be a few things!

First off, I found this: “Those working in memory clinics are specifically trained in understanding conditions such as dementia. They can carry out certain tests to determine your loved one's stage of the condition. This will allow them to prescribe certain drugs, recommend certain lifestyle changes or guide you on useful mental exercises.”

It seems to dovetail with this: “Memory clinics were first described in the 1980s. They have become accepted worldwide as useful vehicles for improving practice in the identification, investigation, and treatment of memory disorders, including dementia. They are provided in various settings, the setting determining clientele and practice. All aim to facilitate referral from GPs, other specialists, or by self-referral, in the early stages of impairment, and to avoid the stigma associated with psychiatric services [What stigma is that?]. They bring together professionals with a range of skills for the benefit of patients, caregivers, and colleagues, and contribute to health promotion, health education, audit, and research, as well as service to patients.”

So, at first blush, it’s a place where health care workers – doctors, nurses, etc. – go to learn how to take care of people with memory problems.

However, I also found this as well at MemoryClinic.net (hotlink below). They offer: “Memory screening self-tests; detailed neurocognitive assessment by neurologist and health care assistant; memory counseling with optimization of genetic, lifestyle, and medical risk factors; memory games and engagement to build cognitive reserve; regular neuropsychological evaluations and memory coaching; referral to specialist care if required for diagnostic workup (MRI, blood tests); symptomatic and disease modifying treatment; prescription and monitoring.”

This online clinic seems to imply that face-to-face, regular doctors and clinics typically offer only this assistance on your/your loved one’s journey:

(emphasis on diagnosis only):
Prevention: Primary care, with limited focus on memory / neuropsychological care
Diagnosis: Primary care tentative diagnosis or referral or memory clinic in specialist hospital
Monitoring and treatment: Sporadic follow-up if feasible

MemoryClinic.net MIGHT be covered by your insurance, but for only $50/month, you can get all of this! But how much of it is different from what you get from a regular clinic?

I know this started out defining what exactly a Memory Clinic is, but it seems there are two definitions: one is a place where Alzheimer’s doctors and those who work with patients with various forms of dementia or memory loss learn the latest research and best practices. The other is sort of like…I dunno, “Brain Camp” (“The Other Woman”, comedy movie: https://www.imdb.com/title/tt2203939/). One of the characters thinks she’s dumb and needs to get smarter by going to “brain camp”.

This on-line memory clinic seems to offer everything a person’s doctor offers – PLUS: Memory screening self-tests; memory counseling with optimization of genetic, lifestyle, and medical risk factors*; memory games and engagement to build cognitive reserve…

OK – I can buy a memory screening self-test at a book store or ask my doctor to do one. I know I can, because I did because I wanted a baseline of me at 64. I’ve no idea what “memory counseling” is. It sounds impressive, but I don’t know who would be qualified to counsel you on your memory, it’s even LESS clear what “optimization” is. Let’s check the definition: “the action of making the best or most effective use of a situation or resource”. So, they’re going to help me make the most effective use of my genetic risk factors; my lifestyle risk factors; and my medical risk factors.

My doctor does the last two regularly. A “memory clinic” does not probably have a genetics counselor on staff, nor do they likely have the ability to do a genetic workup on you. That’s both expensive and unlikely to shed light on your chances of developing Alzheimer’s.

But I was scared, so I did some research into that here: https://breastcancerreaper.blogspot.com/search?q=Alzheimer%27s+risk+increase WORST CASE scenario, if your parent had Alzheimer’s is only an increase of risk of 3%. My AGE has more to do with me developing Alzheimer’s than Dad’s Alzheimer’s diagnosis and his genes do…

So, to say that I’m now skeptical about “Memory clinics” is to understate it a bit. I’m probably about as skeptical of them – and this new computer program – as I am of “brain health supplements”…I’d rant some more, but you can see for yourself (paragraph 3 gives the brand name of the supplement you’re probably most familiar with) https://en.wikipedia.org/wiki/Aequorin

Later, folks…

Resources: https://www.sciencedaily.com/releases/2021/12/211216145926.htm, https://www.nia.nih.gov/health/alzheimers-disease-research-centers, https://www.memoryclinic.net/about/
Image: https://i.insider.com/605cf658106eb50019d05b11?width=1000&format=jpeg&auto=webp

ENCORE #174! – Man Cancer & The Orchiectomy

From the first moment my wife discovered she had breast cancer in March of 2011, there was a deafening silence from the men I knew. 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 first appeared in December of 2011.

So this week I got the news that two good friends of mine have cancer. One has colon cancer and will be undergoing a colECTOMY (ecto = Greek for “to cut out”) during the Christmas season.

The other is twenty-some years younger than me. He was diagnosed with testicular cancer and had a radical orchiectomy after which…well, we don’t know because they are in the specific diagnosis part of his New Normal. He said he’d let me know because I pray well for biological specifics – I can see the parts of the body that are affected – cancer, breaks, dislocations, flu. I am a great prayer for healing of body parts as well as for restoring the heart and mind.

At any rate, some time ago, my wife asked “Why do so many people have breast cancer?” I marshaled statistics in this post: http://breastcancerreaper.blogspot.com/2011/06/why-do-so-many-women-have-breast-cancer.html

The research led me to the statistics for other kinds of cancer – lung cancer, Liz’s mom died from this; blood cancer (leukemia), the son of close family friends; brain cancer, an old friend of mine died from this at 30; skin cancer, my sister, brother and sister-in-law have this; there are others with other cancers that I don’t care to enumerate at this time.

Testicular cancer has increased by 60% in the past 25 years. Why? Right now no one knows the answer, it just…has.

A student of mine, after we talked about why my wife’s hair all fell out during chemo. I talked about how the chemicals target fast-growing cancer cells – and kill the fast-growing hair cells “accidentally”. She then went on a rave about how we should make drugs that ONLY target cancer cells…and that got me to thinking.

Are all cancer cells created equal? Or are they egalitarian? Is testicular cancer the same as breast cancer? Brain cancer? Lung cancer? Skin cancer?

Questions – and today…no answers. Just more questions that I’m going to try to answer in the future…

(AN UPDATE: THIS FRIEND WHO HAD A RADICAL ORCHIECTOMY AND HIS WIFE WELCOMED THEIR FIRST BORN THIS YEAR!)

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