Round Two: Random Thoughts On Breast Cancer, Reconstructive Surgery, Lymphedema, Pain, Work, Suffering, and Joy

So we had to return to the plastic surgeon this week because one of the expanders DEFLATED!!!!!!!!!!!!!!!!

Daughter noticed first and commented that my wife’s chest looked…wrong somehow. This was after my wife had called to make an appointment for another fill even though the lymphedema around the left boob was still there. Not as bad as at first, but not completely under control. This time around also included FB exchange with my sister – who works at a clinic where lymphedema is CURED.

Apparently there’s no such thing up here in the city we live in. Lymphedema is just something you “live with”. So why can they cure it in a city that is world-renowned for its medical establishment but not here, the home of a premier research university? Is it sheer hubris of the doctors here that they can’t cure it and tell their patients they have to suffer? Is it mindless greed, an attempt by the medical establishment to milk a cash cow until it’s dry (a particularly apropos image in this case)? What? My wife has discussed moving her clinic to that city some 150 miles away if that’s what it takes to get treatment!

At any rate, our discovery of the whole process of the placing and filling the expanders has been piecemeal at best, so I thought I’d present what we NOW know, several months later…

The expanders are tough plastic devices – I can’t say “bags” any more – because they are nowhere NEAR that simple! Checking around, I wasn’t able to find any cross-sections showing HOW the thing is built, but I did find this description on the GOOGLE patent page:

Self-sealing tissue expander and method/US 5066303 A/Abstract

“The self-sealing tissue expander includes inner and outer layers of relatively nonflowable material and a median layer of flowable material, The median layer of flowable material which can include one or more sublayers of flowable material is under a predetermined compression imposed by the inner and outer layers due to a prestressing of the tissue expander shell during formation of the tissue expander. The self-sealing shell seals an opening in the shell wall following removal of an infusion needle. In all embodiments of the invention a needle stop member is provided to prevent the needle that accesses the fluid chamber from passing outwardly of the tissue expander. The need for a septum, a fluid conduit or a special fluid entry opening in the tissue expander shell is thus optional. The shell can also be made relatively more stretchable in some areas than in other areas.”

It was accompanied by this diagram:

http://patentimages.storage.googleapis.com/pages/US5066303-1.png

This made a bit more sense – if you count the dashed lines as layer of the expander. It would also explain how the doctor said she would just fill another chamber of the expander.

At any rate, that’s what we learned today. Hope it’s helpful!

Image: http://cdn.medgadget.com/wp-content/uploads/2012/10/AirXpanders-implant.jpg

BREAST CANCER WISDOM 5: From Others and From Life Here…

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…

OK – I’m not going to rant today on the dearth of breast cancer husband/partner sites.

Today I’m going to rant about celebrity breast cancer and the dearth of breast cancer inspiration from women in poverty.

I’m sure I don’t have to reiterate the recent spate of celebrity women who have been diagnosed with breast cancer mutations or have had breast cancer surgery. Their health care is guaranteed and none of them need concern themselves with who will be paying for their prescribed regimen.

But others live beneath a darker shadow and celebration is harder to find. Women like, “...Juanita, a victim of missed opportunities for cancer control. Despite having an obvious breast tumor—and cancer treatment coverage through the Mexican health care system—Juanita did not seek treatment until the cancer had grown so much that she could not use her arm properly...” are much easier to find. (You can read more on this here: http://nihrecord.od.nih.gov/newsletters/2011/09_30_2011/story2.htm)

Even so, as these essays are intended to inspire, I thought I’d include some of the best stories here.

The Hospital Corporation of America (known now as HCA) has taken an active role in helping its employees. While anyone experiencing medical challenges and crises can apply for a grant, I wanted to focus specifically on what we are doing to help those who live in poverty – and even more tellingly – and those who have jobs and STILL can’t make ends meet.

“In 2007, I found out I had breast cancer. I had surgery and had to go through chemo and radiation treatments. As a result, I exhausted all of my PTO and EIB. The chemo treatments affected me, so I was out a whole week after each treatment. I didn’t know how I was going to pay my rent and pay my bills. My supervisor suggested the HCA Hope Fund. I didn’t know anything about it, but I filled out the application and a check came in the mail. It really helped ease some of the worry over how I was going to pay my bills. The second time I applied to the HCA Hope Fund was just last year. My youngest son passed away and the HCA Hope Fund came through for me again so I was able have him cremated. The HCA Hope Fund has been there for me in two critical points of my life. I don’t know what I would’ve done without the extra help.”

Of course, one of the strongest supporters of financially strapped women who suffer from breast cancer is the Susan G. Komen Foundation. Recently, they gave to a local organization called Angel Foundation. A beneficiary of their funds: “Maggie, 47, has been diagnosed with Stage 2 breast cancer. A single mom of two teenage boys, Maggie holds down two jobs to make ends meet. However, in one job, she is self-employed and pay fluctuates, making her income uncertain. She has tried her best to continue working through cancer treatment, but this is not always possible given the side effects. Angel Foundation was able to provide her with $600 to help her support her family while continuing her cancer treatment.”

For more inspiration from this organization, go here: http://www.mnangel.org/donate/celebratingamilestone

Resources: http://nihrecord.od.nih.gov/newsletters/2011/09_30_2011/story2.htm

Image: http://www.mnangel.org/cmsimage/955/wide

A Fantastic Cancer Voyage Chapter 2 II

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…

One of my fondest memories as a kid is watching the movie FANTASTIC VOYAGE. In it, a group of scientists and their ultra-futuristic laser-packing “submarine” are reduced to cell size and injected into the blood vessels of a world diplomat in order to destroy a blood clot in his brain.

What would a FANTASTIC VOYAGE: Breast Cancer look like? I’m going to write a novel here, short chapter by short chapter and I’m going to include the latest research and I’m going to imagine the entire story here for your delectation. If you want to start at the beginning, look left. Scroll down to LABELS. The first one is “A Fantastic Cancer Voyage”. Click on it. Scroll to the bottom and you will find episode on. Let me know what you think after you’ve read the whole thing!

Chapter 2, ii

Doctor Reverend Isamar Noor, also known as The Crackpot because of he actually had religious views regarding faith and science, said, “It may surprise you Dr. Olubunmi that I’m here because I want to be a part of your team.”

“All of the positions have been filled. Thank you for your time,” she said automatically.

“You don’t know what position I’m applying for.”

“Court jester?” she asked. She instantly regretted the words. She made her screen transparent and said, “I’m sorry. That was uncalled for. Please accept my apology.”

“Considering my usual stance on technology, Humanity, and spirituality, I suppose I had that coming.” He made a face that could only be described as “sour”.

“You’ve been known to negatively address certain life-advancing technologies in the past.” She sniffed, “Though I suppose I should also admit that you’re neither alone, nor do you represent the farthest edges of the political spectrum I’ve had to deal with.”

“Others express some hesitation about using the pico submarine technology to save the life of a world leader?”

Ohloo looked up at him, shutting down her virtual screen. “You admit that Kim Lin Ghandi is a world leader?”

Isamar looked uncomfortable for a moment, then shrugged and said, “I cannot deny that she leads the world, however absurd I find her personal philosophy, she is a powerful and persuasive woman. India and China would almost certainly have been at war by now if it hadn’t been for her continual efforts to bring them to the table to talk and on occasion to interpose herself between their nuclear arsenals.”

Ohloo studied the older man and said, “I don’t find your personal philosophy absurd, Reverend Noor. I just find your methods of presenting unpalatable.”

He nodded then bowed in prayer then said, “I am like you in that way, Dr. Olubunmi.”

“Me? In what possible way are alike?”

He paused some time before he finally said, “While I don’t think anyone, anywhere doubts your sincerity in desiring to save the life of this influential woman, it’s been rumored that you’ve brought pressure to bear on any number of people. I’ve even heard that once one of your supervisors – Alex Benton, I believe was his name – tried to block you from using your picosubmarine to perform a controversial procedure. When he refused to grant permission, you turned around and left the hospital. I believe the story was that you were still wearing your scrubs and a surgical mask.”

Ohloo opened her mouth to deny the accusation then closed it. She glared at the Reverend Noor and finally said, “I was not wearing a surgical mask when I walked out the door. That was hanging from a doorknob in the lobby.” She studied the man again then asked, “You’re saying that despite our unorthodox methods, we get results?” He inclined his head. She remained silent, listening to the sleet trying to gouge the glass of her Mayo Clinic office. “What position do you want?”

“Official clergy and observer.”

She pursed her lips again then said, “Done. Now get out of here so I can get some work done. Our first team meeting will be tomorrow morning, oh seven hundred. Be here and have an itinerary for the day finished for my approval. Fifteen minute intervals will do. The surgery – from prep to debriefing – should take forty-one hours.”

“Will I be linked in to the sub?”

Ohloo threw her arms in the air, “What’s so enticing about laying on a table and watching an elaborate video game?”

Dr. Noor stared at her until she finally met his gaze. He said in a low voice, “Because history is going to be altered dramatically.”

Image: http://medgadget.com/wp-content/uploads/2006/11/Fantastic-Voyage-200x290.jpg

The Reconstruction Era – Part 6

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…

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

What has amazed me is how INTERESTED people are.

As my wife has had “fills” [Define: “Tissue expansion is a relatively straightforward procedure that enables the body to ‘grow’ extra skin for use in reconstructing almost any part of the body. A silicone balloon expander is inserted under the skin near the area to be repaired and then gradually filled with salt water over time, causing the skin to stretch and grow. It is most commonly used for breast reconstruction following breast removal...”] the size of the expander has increased, creating a place for the actual implant to go once the fills are done.

Couple other things here, one of which is the new name, the other what they “look” like. First the name. My wife has wisely insisted that the surgery is creating “boobs”. These are NOT breasts. Breasts are natural organs that God or evolution designed to feed newborn infants. The “boobs” are cosmetic reconstructions designed to look like breasts and to create the appearance of breasts – and to deflect sympathy and strange looks. They allow a post-mastectomy woman to feel like the other half of the Human race. One plus of the reconstruction – my wife will NEVER HAVE TO WEAR A BRA AGAIN! The boobs are designed to stay exactly where the doctor put them.

Which segues into my second observation regarding what they LOOK like. A few intimate friends of my wife have asked to see them and have marveled at how strange they look. They are, in fact rather like the alien called Odo on the old Star Trek television Deep Space Nine. This alien’s natural form is nothing like Human, so to make everyone around “him” feel more comfortable, “he” has taken on the form of a Human male. “His” face, while recognizable Human has none of the FINE features of a Human face. Odo has eyes, nose, mouth and ears, but only in smooth, featureless outline.

The boobs my wife has are smooth, featureless outlines of real breasts. There is no nipple – though when the surgery is done, the nipples will be added. However, we were informed early on that the areola itself – the dark skin surrounding the nipple – will NOT be recreated. She has to go in…FOR TATTOOS!!!!!!!!!!!!!!!!!! Which are not, of course, covered by insurance as in fact, no tattoos are, being as they are an art form.

“You have GOT to be kidding!” you quip.

I kid you not. I look forward to the day when my wife and daughter have to go to the nearest certified tattoo artist, walk up to the desk of the multiply-pierced and tattooed associate and say, “Excuse me, we’d like to get an estimate for how much it would cost to get areolas tattooed on my new boobs.”

Resources: http://www.plasticsurgery.org/reconstructive-procedures/tissue-expansion.html

Image: http://www.treknews.net/wp-content/uploads/2011/10/odo-changeling1.jpg