A Fantastic Cancer Voyage Chapter 1 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 the movie, 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. Likely it WON’T be once a month…


Dr. Olubunmi Nwagbara – Ohloo to her close friends, Dr. O to those who wouldn’t try her last name for fear of offending her – said, “Kim Lin Anzan has aggressive triple-negative breast cancer. We’ve tried the usual treatments, but it’s a rare form and it’s going to kill her unless we do something drastic.”

The New Zealander, Hirini Kenana replied, “So you’re proposing a radically new treatment.” He leaned forward, dark eyes flashing. Though there were no tattoos visible, Ohloo had seen photos of him wearing an A-shirt. As Kim Lin Anzan’s agent, he was often in the news. Wearing the conservative suit with a teal shirt and a matching floral print tie, the true markings of tā moko were mostly hidden except for a pair of arcs near his hairline.

Ohloo nodded. “I don’t see that there’s any other way to help her.”

He pursed his lips and leaned back, saying, “Or furthering your own career and fame, either.”

She considered taking offense, which seemed to be what he was trying to make her do. Instead, she shook her head, “While it would undeniably give my career a boost if it worked, it would kill me if it didn’t.”

“What?”

She studied him. If she couldn’t convince him that this was the only way to keep Kim Lin Anzan’s mission – and her body – alive, then she’d never even have the chance to talk to the woman herself. She said, “The submarine we would send into her bloodstream is a picomachine.”

“What’s that?”

“It’s bigger than a molecule – you know what nanotechnology is, correct?” He nodded slowly. “This is larger than nanotech, but still extremely small. And contrary to what the tabloids tell you, there’s no ‘brain upload’ of my mind into the submarine. I’ll have electrodes on my skull and a few more deeply implanted and the submarine has a pico-circuit board and radio with which I’ll be in constant contact. I will be, in effect, the pilot of the submarine as well as the chief medical officer.”

Hirini leaned forward, “Is there any way I could come along as crew?”

Ohloo leaned back. While it was theoretically possible, she hadn’t really given it much thought. There wasn’t any real limit to the number of frequencies the sub could receive, so there shouldn’t be any real limit to the number of “crew” who could accompany her. She leaned toward him, “I would caution you, Mr. Kenana, we would be intimately connected to the submarine. If it were damaged in any way, we would experience that damage as pain. If the submarine were destroyed, there’s a good chance that receiving that level of stimulus would damage or possibly destroy the parts of the brain where we were connected to it.”

“When Master Anzan dies, my job on Earth will be over.”

“You won’t carry her message on?”

He shook his head slowly, “I can’t. Her life IS the message.” He leaned forward again, “The message of peace, persuasion and surrender is the only thing that will save this world, Doctor Nwagbara. But it’s her message. I just help her with whatever she needs; I’m not an incarnation of the Buddha. She is.”

Ohloo said, “I’ll check into it.”

“Good. Because she’s convinced she only has a week left to live.”

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

BREAST CANCER RESEARCH RIGHT NOW! 4: Friends, family and support

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: http://www.sciencedaily.com/releases/2012/11/121109091158.htm

While it doesn’t seem shocking on the surface and our response might be, “Well, DUH!” this research does bear looking at.

Mostly because it’s the first time anyone has tried to find evidence that supports something that we often take for granted.

My wife has had a very, very strong network of friends and family since her diagnosis in March of 2011. (Not just saying that because I worked really hard at being there for her! ;-)) But it seemed like from that day on, people seemed to pop out of the woodwork. Her Caring Bridge posts drew comments from friends and family, but surprisingly from strangers. Others sat with us during surgeries and treatments – even friends of our daughter lent their support during the initial crisis.

Support has continued. Going to a new clinic, and even to the old, people that worked with her were caring and thoughtful and feeling like a cypher was an unusual occurrence.

But what the article talked about was finally QUANTIFYING what has remained a vague, anecdotal feeling. By quantifying, I mean putting numbers to the feelings. The results are startling. If a woman has a small, unsupportive community of people around her when she discovers she has breast cancer, she is 30-60 percent more likely to DIE result of the diagnosis!

What should that say to us? It would be easy to brush it off and suggest that women with small communities of supporters either want it that way or a disagreeable people who (somehow) “deserve” what they get. It would be easiest to simply ignore something that many people know in their hearts and now has the numbers to support it.

It could ALSO be a loud call to those of us who are either survivors (like my wife) or part of support communities (like me) to reach out to others who don’t have communities.

The next time you meet someone with a new diagnosis – or someone who is anywhere along the way in her breast cancer struggle – offer to become a member of her community of support.

The numbers are in – if you support someone, her chances of survival GO UP!

Image: http://www.makebeautysimple.com/files/blog/pic-sp-raceInformation-1.png

Lymphedema Treatment: Past, Present…is there a FUTURE?

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…

While I talked about the lymphatic system earlier (http://breastcancerreaper.blogspot.com/2012/02/lymphedema-another-for-rest-of-your.html), as well as lymphedema (http://breastcancerreaper.blogspot.com/2012/09/and-onward-against-lymphedema.html), I recently started to feel that my education was LESS than complete for me as a layperson. So, here’s MORE on lymph and lymphedema.

As to the FIRST article, I wasn’t clear on that until today. According to my current research, the lymph vessels PRIMARILY move lymph around the body due to something called “peristaltic action”. What that means is that the fluid is moved around in a way similar to the way food gets moved through your intestines – muscles slowly tighten up and push the food along while acids and enzymes act on it to break it down.

Lymph is pushed along through the body by tiny muscles in the lymph ducts that slowly contract and move the fluid from the smallest vessels to the nodes and from there into the bloodstream.

OK – we’re clear on that.

What I was REALLY unclear on and what caused a major problem for us recently, is that 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.

What IS lymphedema you ask?

“Lymph is formed from the fluid that filters out of the blood circulation to nourish cells…and maintain tissue fluid balance. [T]his fluid [is] pumped by a rhythmic peristaltic-like action by smooth muscle cells within the lymphatic vessel walls…The fluids collected are pumped into continually larger vessels and through lymph nodes, which clean out debris and police the fluid for potential threats from dangerous microbes. The lymph ends its journey in the thoracic duct, where it re-enters the blood circulation.”

When the nodes are removed, “...a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system..” occurs when lymph leaks out through the vessel walls and accumulates in the areas between cells (interstitial areas).

Extremely common in patients treated for breast cancer, it wasn’t until the mid-1980s that the medical establishment began to both study the problem and establish treatment criteria. “My first encounter with the relatively unknown syndrome, “lymphedema,” was in 1985.I ran Aurora Manor, a post-operative care facility opened in 1980 in San Francisco, where I saw a patient with an extremely enlarged swollen arm. She had undergone breast reconstruction after a mastectomy and it appeared that she had an allergic reaction from the intravenous. As a Registered Nurse/Caregiver, I immediately called her surgeon and expressed my concern. He laughed and told me she had the swelling in her arm for nine years, and there was nothing that could be done to improve it. I was puzzled—and inquisitive—as to the underlying cause/s and possible treatment. I reached out to local colleagues; they each told me that it was lymphedema as a result of her breast cancer surgery, and no effective treatment was available.” (emphasis mine)

Lest you think that doctors in the early 21st Century are more educated and better equipped than that, I’ll disabuse you of the notion. Within twenty miles of each other are two hospitals. They belong to THE SAME HEALTH CARE SYSTEM. Yet the physicians in one, renowned for its treatment of breast cancer loudly professed that “nothing is wrong”. The physicians at the other nodded and got to work treating it.

After a week of treatment that MY WIFE HAD TO REQUEST and for which she had to SEEK OUT HER OWN PROGRAM, the swelling has been reduced! A week!

If you are reading this and lymphedema has entered your life – either as a patient or in your spouse, mother, girlfriend or sister – then YOU NEED TO FIND SOMEONE WHO BELIEVES IT IS A PROBLEM.

The longer you wait, the worse it will get...and I’m not even exaggerating.

Resource: http://www.lymphnet.org/
Image: http://www.lymphedemapeople.com/images/LymphedemaArm.jpg

BRAVEST Move In The Life After Diagnosis EVER

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…

In a move that towers in the annals of the history of our marriage, my wife made the boldest move yet in her Life After Diagnosis: she changed hospitals, doctors and therapists for continued cancer treatment.

This is bravery beyond my own comprehension.

Leaving the confines of Regions Hospital, where she has received treatment since the traumatic diagnosis in March of 2011, we met first in the Physical Therapy Department of North Memorial Medical Center.

This institution has been a part of my own life for nearly half a century as it is the place where I got my tonsils out when I was six. It’s the place where my sister was born. It’s the place where…no matter, this place holds a large chunk of the memories I have of hospitals and has even played a role in a novel I’m writing. This sprawling institution not only added wings and parking ramps, programs and a Level I Trauma Treatment Center with helicopter ambulances and training programs for paramedics (my son trained there on several occasions); it also spilled over into an abandoned shopping mall and now generates more business than the mall itself – possibly more than the entire STRIP of malls extending west for over a mile!

The PT was an eye-opening experience as the therapist, appalled at the lack of treatment my wife received at the “other hospital”, decided to start all over again and treat her RIGHT. This hour-and-a-half appointment is everything it SHOULD have been and while the therapist is not promising miracles, she IS promising commitment.

In fact, some of the things she told my wife are disheartening: the body pain will not likely go away: she was injected with toxic poisons that absolutely killed the CANCER cells, but created an immense amount of collateral damage (more on that next week). She will likely have to learn to live with some level of pain forever.

BUT, the therapist has a positive prognosis for reducing the lymphedema swelling and increasing the strength of my wife’s grip. She also had warnings that were never passed on at the Other Hospital: never, never, never expose the arm to cold. Never, never, never get a cortisone shot again. As well, she had positive news, too: “I can get rid of the trigger finger symptom in PT! We WILL work on that!”

All-in-all a great beginning to the first hospital-change-visit!

Then to the actual cancer clinic. After cataloguing pain and desires, the new doctor ordered blood work to check for any cancer markers. As well, she answered a burning question my wife had: “Why didn’t they order a CAT scan or an MRI or any other kind of scan? Shouldn’t they be checking to see if there’s any cancer?”

The new doctor FIRST informed us that a typical CAT scan exposes a patient to the amount of radiation equivalent to 100 X-rays!!!! (More on that later!) MRI wasn’t even considered. Secondly, she said that the only time they order them is when the patient is having pain – of if they were in Stage IV (“Stage IV describes invasive breast cancer that has spread beyond the breast and nearby lymph nodes to other organs of the body, such as the lungs, distant lymph nodes, skin, bones, liver, or brain.”) My wife was NOT at that stage.

To summarize: in an act of incredible bravery, my wife changed hospitals, doctors and clinics. The change appears at this point to have been for the better and she is getting the care that she should have been getting all along. The added bonus (and the simple explanation we give to people who ask and don’t really have time to hear the complete answer) is that North is CLOSER. A fifteen minute, local road drive from both of our jobs compared to a 45 minute interstate drive to Regions.

This is a good thing – and not only will I keep you posted, I’ll be talking more about collateral damage in chemotherapy and CAT scans in later posts!

Resources: http://www.breastcancer.org/symptoms/diagnosis/staging#stage4
Image: https://www.itriagehealth.com/https_image_proxy?url=http%3A%2F%2Fwww.healthagen.com%2Fassets%2FNorthmemorial%2Fupdated%2Fnorth-memorial-MC-EC.png