ENCORE #124! – The Reconstruction Era, Part 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 first appeared in May of 2013.

It appears that the next event is breast reconstruction!

It’s been two years now since the double mastectomy and shortly, it will be two years since chemotherapy began. My wife now has an appointment to begin the next phase: breast reconstruction.

As is my wont, I am going to ONLY cover the medical side of reconstruction. I WILL tell you that the ultimate choice is your own. We discussed for nearly a year the different types of reconstruction, we researched, my wife talked to dozens of people both online and face-to-face. We consulted half a dozen doctors, changed clinics and changed clinics then went back to the second clinic again. Breast reconstruction is not a decision to be made lightly nor is it to be made quickly. There are ramifications, risks, and considerations; soul-searching and God-seeking. All of these should be part of the decision to yes or no as well as the decision of which or what.

So…I am not endorsing or advising any of the methods I will write on here. I will translate the doctors – as I’ve tried to do all along. This week: Implant-based reconstruction.

First, a clear definition: “Breast reconstruction is a surgical procedure that restores shape to your breast after mastectomy (surgery that removes [one or both] breast[s] to treat or prevent breast cancer).”

The first step after the mastectomy – which may also happen during the mastectomy itself or years later – is that the surgeon lays down a device called a tissue expander.

http://www.allergan.com/assets/images/US/products/tissue_expanders.jpg

The expander is basically a balloon that the clinic will fill with salt water a little bit at a time. The surgeon puts it under BOTH the skin and the muscle and leaves it there. After the surgery to put it in, the person visits the doctor for an appointment where some salt water is injected into it and then left there. It stretches the skin and muscle a little bit. Then the person waits while until the next appointment. Obviously, there will be feelings of the skin being stretched; I IMAGINE that the feeling would be similar to what happens when you get a sting of some sort and your knuckle swells a bit.

In my wife’s case, the surgeon will add something fairly new to support the expander – a “donated human skin scaffold” which will go along the bottom side of the expander.

“Lab-made skin and soft tissue substitutes (in this case) is made from donated skin but it has all the living cells taken out. What’s left is collagen – the same stuff that makes up tendons, ligaments, cartilage, bone, and intervertebral discs (as in “I slipped a disc!”)…Tissue-engineered skin...can be used as either temporary or permanent wound coverings. Other situations in which bio-engineered skin products might substitute for living skin grafts include certain post-surgical states such as breast reconstruction…”

“AlloDerm is a soft-tissue implant fabricated by a proprietary method...”

The surgery to place the expanders and the AlloDerm will take two to four hours and includes new drains to reduce uncontrolled swelling.

In the interest of keeping the posts readably short, I’m going to stop for now and continue next week!

Resources: http://www.mayoclinic.com/health/breast-reconstruction/MY00207,

https://securews.bsneny.com/web/content/dam/BSNENY/Provider/Protocols/B/prov_prot_701113.pdf, http://emedicine.medscape.com/article/879007-overview

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

MERRY CHRISTMAS!

Image: http://rlv.zcache.com/merry_christmas_breast_cancer_pink_ribbon_wreath_4_25x5_5_paper_invitation_card-r016a4eafe02440c1b41ea4fef1f8fd93_zk9gs_324.jpg?rlvnet=1

GUY’S GOTTA TALK ABOUT…Alzheimer’s #27: Dementia? Alzheimer’s? What’s the Difference???

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 came here today to write an article on the difference between dementia and Alzheimer’s. The chart below summarizes it SO neatly, that I’m just going to share the chart today.

However, I’m also going to add a couple of things. First, my mom suffered from dementia due to aging, possibly exacerbated by disease (vascular disease, as she was diagnosed with congestive heart failure years prior to her death) or even mini strokes. An old and dear friend of mine was diagnosed with ARD, AIDS-Related Dementia (“When HIV spreads to the brain, it results in encephalopathy (a disease which affects the brain's function), which causes dementia. The greater the spread of infection in the brain, the worse the dementia symptoms become.”)

The chart above says everything else I wanted to say.

I continue to learn about Alzheimer’s, this hated and fearsome disease that took my father less than a year ago. Let’s hope we can put down partisan differences in Congress and get back to the work of serving the people and fund more effective research on stopping it…if only: https://www.congress.gov/bill/116th-congress/senate-bill/740/text, https://alzimpact.org/press/press_release/id/144

Resource: https://medium.com/aginginbeauty/what-is-the-difference-between-alzheimers-disease-and-dementia-84a571b6b50d, https://www.hopkinsmedicine.org/health/conditions-and-diseases/hiv-and-aids/hiv-and-dementia

Image:  https://upload.inkspire.org/uploads%2F1503370874800-Alzheimer-disease-patients.jpg

ENCORE #125! – The Reconstruction Era: Part Two

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 first appeared in May of 2013.

“It appears that the next event is breast reconstruction!”

That’s how I opened this new series a few weeks ago.

It appears that the next event is NOT breast reconstruction – it’s getting healthy enough to HAVE the breast reconstruction surgery!

So – changes in diet are in order.

NOT just for my wife, but for me as well.

In the past two years, I’ve pretty much let myself go as far as eating and exercising are concerned. Not that I was model-buff…actually EVER…but I am currently heavier than I have EVER been in my life (OK – I may have been heavier before, but that was only when I giving piggy-back rides to 100 pound Bible Camp kids…)

At 262, I am a jiggling mass of quivering flab. I’m out of breath walking up and down four flights of stairs. My legs are weak after biking 3 miles around the lake. I take comfort in graham crackers and butter…I am a wreck considering that in 1984, I returned from a mission trip to the West African countries of Nigeria, Cameroun, and Liberia weighing a wispy  150 pounds.

More recently, I had dropped to 225 pounds on the Atkins diet in 2009 (I think). For ME PERSONALLY AND I DO NOT ENDORSE ATKINS FOR ANYONE ELSE ON THE PLANET BUT ENDORSE IT FOR ME, MYSELF, AND I AND DO NOT SAY IT WORKS WONDERS FOR ALL PEOPLE BUT WHEN CONSIDERING MYSELF AND ONLY MYSELF AND NOT ANYONE BUT ME, this is the only time a change in diet took off weight.

So, I will be returning to the Atkins Diet. I just finished re-reading the introduction and will now commence the INduction.

What does that mean for my wife?

She’ll be joining me because as we prepare for breast reconstruction, the doctor has set up some goals and conditions. The reconstruction (as I noted in the first post of this series, my wife will be undergoing “Implant-based reconstruction”) has two phases, the first being the placement of expanders and the shelf-like scaffold. In order to have the surgery, which will lay her up for a week followed by another three weeks of not reaching over her head, she has to be in good condition and her numbers (in this case, diabetes numbers of triglycerides, A1c counts and others) have to be optimal.

After a visit to the doctor earlier this week, we found out that the numbers were not where they needed to be. So we will embark on an adventure to change our lifestyle a bit. Nothing drastic, actually, as we aren’t junk-food-aholics and we don’t often use “pre-prepared” foods (like microwaveable pancakes or pre-cooked bacon). We DO have to lower our carb intake, increase the number of times we walk the dog and exit the sugar from our lives.

Those of you familiar with Atkins, know the induction phase can be brutal. It is CERTAINLY not for a person with Type-2 diabetes. BUT, my wife will be modifying it while I follow it rigidly.

School ends in a few weeks, we head off for a camping trip to our far northland with some old and dear friends and then I start work at summer school – and my wife goes for surgery.

We will keep you apprised of our progress, but solicit your positive thoughts and prayers!

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

BREAST CANCER RESEARCH RIGHT NOW! #70: A CURE for 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…

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: A Cure for Lymphedema?

As this is only a brief review of an article I can’t find, I’m going to quote it in its entirety:

“Making Headway Against a Common and Disruptive Problem: Lymphedema

We owe patients complete information, navigation for decision-making and, of course, more research into this common problem. Initiating public dialogue and education is the first step.

BY DEBU TRIPATHY, M.D.

PUBLISHED AUGUST 23, 2019

“Many patients are not aware that lymphedema can be a consequence of surgery and radiation, common treatments used for many cancer types. Lymphedema refers to swelling — often chronic — of the arms, legs or other regions of the body because of damage to the lymphatic system. It is usually a result of surgery, often done to cure or treat cancer, and can be worsened when radiation is given to lower the risk of recurrence or to relieve cancer-related symptoms. Over the past few decades, we have been able to better under- stand the procedures and other patient factors that increase lymphedema risk. This can help with the complicated decision-making process that balances the benefit of the proposed treatment (such as better curability) against long-term consequences that may affect quality of life and function.

“One of our feature articles in this issue of CURE® highlights newer therapies that can reduce lymphedema when standard physical therapy and compression protocols are not sufficiently effective. This may change the whole equation for the difficult balancing act, making it more feasible to choose therapies that, although effective, are likely to cause lymphedema. Newer approaches that can reestablish lymphatic flow are still being refined and studied and are showing favorable results. These require microsurgical techniques to splice tiny veins and bypass the lymphatic networks that are constricted because of local cancer treatments. One procedure actually transplants nodes and their microvasculature from an unaffected part of the body to the appropriate area, where it can help drain edema. These procedures are not yet widely available, but they are continually being innovated and, if longer-term results hold up, likely to be adopted by more centers.

“Although the highly technical developments are very important, it is para- mount that, prior to surgery, patients fully understand the risks of lymphedema. As the article describes, it is possible to be more selective in recommending lymph node removal and reducing its use for several types of cancer. We are still not quite sure how to effectively prevent lymphedema after surgery, but there is evidence that a patient can begin exercise and stretching once surgical healing is mostly complete. Ongoing studies are examining whether nonstrenuous exercise and even structured weightlifting — once forbidden for at-risk patients — can help. We still tell patients to avoid blood draws and blood pressure detection in the arm that underwent lymph node surgery and use compression sleeves during air travel, even though some experts now discount these restrictions.

“We owe patients complete information, navigation for decision-making and, of course, more research into this common problem. Initiating public dialogue and education is the first step.”

Resources: https://www.curetoday.com/publications/cure/2019/summer-2019/making-headway-against-a-common-and-disruptive-problem-lymphedema         

Image: https://i.ytimg.com/vi/T-N84trfNdc/maxresdefault.jpg

ENCORE #122! – The Wicked Witch of the West Is DEAD! – Thoughts On Continuing Life As A Breast Cancer Husband

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 first appeared in August 2013.

We started celebrating our 26^th wedding anniversary this past week.

“Started celebrating” because as a teacher, my paycheck “runs out” at the end of the summer, a few weeks before we start work again. This has been true for the past 26 years just as it is true this year.

Because of that, we’ve never had what you’d call a “spectacular” anniversary. Don’t get me wrong, we’ve had many GOOD times! Went to a local dinner theater last year to see the musical XANADU; did a “blockbuster movie” watch the year APOLLO 13 and EXCALIBUR came out topped with supper at the then brand new local Champps. For another we spent a night at a Bed & Breakfast in Stillwater. This year my wife had a quiet day at home while I hurried north to pick up my daughter-in-law and grandkids to ferry them to a doctor appointment – my granddaughter had pneumonia. We had takeout that night from our favorite Chinese restaurant and watched OZ THE GREAT AND POWERFUL. The addition though is that with some old and dear friends of ours, we’ll be spending the Thanksgiving holidays in Wild Eagle, Wisconsin at a resort for a week! That will allow us to celebrate in the style we should have been celebrating all along.

So what does all this have to do with breast cancer?

While it may not be obvious to you, it is to me: we get to celebrate our 26^th wedding anniversary two and (almost) a half years after a breast cancer diagnosis! In 1911 the diagnosis would have been a death sentence. In 1961, she would have been treated with “stone knives and bearskins” with drugs that would have made her violently ill and miserable – and probably wouldn’t have made much difference at all.

Here in the second decade of the 21^st Century, the treatments she received and continues to receive cured her of the cancer and given us a chance to celebrate our...well, when I exclaimed that we could be together for another 26 years, my wife pointed out that I would 90 years old by then. Hmmm...I guess if that’s God’s plan, then so be it. But 90? Whew – that DOES seem old.

At any rate, in the here and now, the point is that we’re planning an extended celebration of our 26^th Wedding Anniversary and those plans rest firmly on the basis of the pain, treatments, research, advances, and drug regimens my wife has experienced since the original diagnosis.

So “...let the joyous news be spread, the Wicked Old Witch at last is dead!” (And no, I DON’T mean the Wicked Witch of the East with the Ruby Slippers – I mean the melted remains of her sister – the Wicked Witch of the Cancerous West!)

Let the celebration continue!

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

Encouragement (In Suffering, Pain, and Witnessing Both…) #9: Strength Through Lymphedema

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…

I was looking for encouragement for people who suffer lymphedema; in particular those who suffer from the condition because of lymph node removal due to cancer; specifically breast cancer.

I can’t find anything…

Is that surprising? I don’t know. Lymphedema doesn’t have a “wow!” factor, I think that might be the problem.

Everybody cringes when they have to talk about cancer. Its many different colors and the fact that it can strike anyone, anywhere, whether multi-millionaire movie star to the poorest of the poor on Earth inspires countless responses from terror to story. Virtually everyone has a “cancer” story, and when the diagnosis comes, people flock to support and attempt to alleviate the suffering of both victims and those close to them.

Lymphedema doesn’t inspire the same response at all. In fact, lymphedema inspires such an insipid response, that until very recently, medicine consigned the condition as “something you’re just gonna have to live with; here’s a compression garment.”

That has changed. During recent sessions with a lymphedema specialist (which are very few and very, very far between – because being a lymphedema specialist wasn’t really a “real career”…), we received new hope that lymphedema IS curable.

But even in recent history, a diagnosis of lymphedema was met with a shrug: “…the history of lymphedema treatment begins a mere three decades ago. Before the RECOGNITION that lymphedema was a treatable condition, doctors just laughed at it, shrugged their shoulders and said, ‘Oh, well.’

“That was mostly because the doctors were males and the victims of secondary lymphedema caused by node excision in the treatment of breast cancer was a ‘woman’s problem’. I imagine it would have received a bit more attention from the medical community if cancer node excision had caused the shrinkage of another extremity near and dear to the heart of every man...

“At any rate, with the founding of the National Lymphedema Network and their pioneering work in the treatment of lymphedema, more and more doctors are recognizing that not only is lymphedema treatable – it NEEDS to be treated rather than ignored.”

I’ve written on the topic of lymphedema eleven times since starting this blog. I have found virtually nothing regarding encouragement. The 2012 (in case you can’t do subtraction, that’s seven YEARS ago) article linked below in Resources expresses this response precisely: “Voices from the Shadows: Living with Lymphedema”.

Lymphedema is a shadow disease, disregarded mostly and certainly not the subject of super-star fundraisers! Kathy Bates, the actor now best known as being Amy Farah Fowler’s mother on the recently concluded BIG BANG THEORY, is a lymphedema advocate. I’ve linked to her recent appearance on WENDY, the Wendy Williams talk show where she discusses her life, including her experience with lymphedema – https://www.youtube.com/watch?v=iWcZqQXBOOM.

In Voices from the Shadows, participants were encouraged to “…write about your deepest thoughts and feelings about how lymphedema and its treatment has affected you and your life. Really let go and explore your deepest emotions and thoughts.” By the same token: “…some positive feelings were also present. These positive feelings centered around perceived support from other people and strength gained from belief a higher power assisted them in coping with this chronic disease. Other people and God appear to have a positive, fortifying, effect on breast cancer survivors with lymphedema and partially fill the void they experience from societal marginalization. The women in this study offered moving stories of the encouragement of friends and family members, coupled with their acceptance and willingness to help in any way.”

So, some encouragement from the study:

“I have wonderful friends and family. They take me as I am and are very concerned about what I call my leftovers from cancer. I don’t think I could ask for better people in my life.”

“My husband has been very supportive with this. He wants to know about it as well, and so do my friends and family. I share with others about lymphedema who are going through Breast Cancer, and I hope that I will help others.”

“I am truly blessed to be able to somewhat go on with my life and my family dealing with what God has dealt me. He doesn’t waste your pain. There is life after cancer with lymphedema”.

“I am living with this condition everyday but not as an invalid but as a survivor. God spared my life and lymphedema was part of the package. That’s OK when you consider the alternative.”

We, as friends, family, and even as a community of those that have been touched by lymphedema, can play an important role in encouraging those who suffer from lymphedema…

I have learned that I can do MORE to support my wife and here publicly promise to do more!

Resources: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3172392/

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