A Fantastic Cancer Voyage Chapter 1 III

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. 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 – sat in the uncomfortable hospital chair at the foot of Kim Lin Anzan’s bed.

The leader of one of the fastest growing philosophical societies on Earth was a frail woman, though barely forty years old. In pain and with a death watch standing over her, she still managed to meet Ohloo’s gaze with strength. She said softly, “So my only chance of surviving is to allow you to enter my bloodstream and deal with the cancers directly?”

Ohloo nodded slowly. For some reason, Kim Lin Anzan made her uneasy. She doubted it had anything to do with her firm agnosticism that had its roots in conservative Lutheranism. Ohloo had given up on religion shortly after she turned thirteen. Perhaps it was the woman’s refusal to argue. Ohloo said, “I can’t tell you that the picosubmarine is your ‘only’ hope. Medicine rarely deals in absolutes. I hope you can understand that.”

Kim Lin Anzan smiled faintly. “I don’t deal in absolutes, either, Doctor."

“But...”

“That I believe that peace, persuasion and surrender are in fact the only way to deal with relationships on this planet of ours. Especially since there are nine billion of us now.” She snorted a breath. “I don’t believe I’m the incarnation of the Buddha as my agent and some of my followers believe.” She raised herself up a bit on her elbows, “In fact, Doctor, I tend to be a rationalist. So I understand what you’re offering me is hope, not definite cure.” She lay back.

Ohloo opened her mouth to respond then closed it. Her right pointer finger drifted to her mouth, covering it.

Kim Lin Anzan smiled and said, “Your body language says you have many things to say but are holding them back. You might as well speak them if you’re going to be living inside my bloodstream for a time. What do you plan to do first?”

Her finger stiffened for a moment then she pulled it away. “All right. Rationality then.” She pulled out her computer tablet, pressed its ‘projection mode’ and tapped it to life. A virtual screen popped up between them, letters and images facing the correct direction for both. “Since you had the biopsies, we’ve found more cancer masses in both breasts, in the liver and several suspicious lesions on your bones. The cancer type is known as a ‘triple negative type’ – I’m sure your initial doctor told you about it, but yours is unusual. It also has hallmarks of inflammatory breast cancer as well.”

Kim Lin Anzan’s gaze sharpened as she said, “I understand that the triple negative breast cancer does not express the genes for estrogen receptor, progesterone receptor or Her2/neu and can’t be treated with the usual suite of chemotherapy and radiation. What does it mean that it has aspects of this inflammatory cancer?”

Ohloo pursed her lips. How to explain it to a lay person?

Kim Lin Anzan said, “I was a second year medical student when I switched to philosophy, Doctor. The terminology of my early years hasn’t been lost. I actually spend quite a bit of time talking with people about how they perceive their medical states. Please, without using really, really big words, explain it to me and why you need to inject a picosub into me."

“All right. It’s true that the cancer cells you have are non-responsive to the regimen developed to treat standard breast cancer. T-neg is still far behind in research dollars and so we simply don’t know as much about it as we do about other types. Yours is among the first cases of T-neg with inflammatory characteristics. Diagnosis is difficult because it can manifest itself as mastitis. It can also be completely hidden until symptoms abruptly surface – as they did in your case. The cancer in you is advanced and spreading. It’s systemic, affecting all of the organs breast cancer typically affects. Except your brain. It doesn’t seem to have crossed that barrier yet, but we have no way of telling at this point.”

“And you want to go into my body…why? For fame and glory? Because you believe my message? Because India and China stand on the brink of war – but both hear me because of my lineage and family connections?”

Ohloo leaned back in her chair, this time studying the woman on the bed intently. Finally she said, “Yes to all of those questions.”

“If I die under your care, you will never work again,” Kim Lin Anzan said. Ohloo couldn’t trust herself to answer. The incarnation of Buddha smiled at her with a smile taken from a carving then said, “You risk all because you actually believe I might be able to act the part of usher in our quest for world peace!”

Ohloo felt herself blushing. It wasn’t as obvious on black skin, but she knew it was there.

Kim Lin Anzan nodded slowly then and said, “When do we start and what will you do?”

References: http://en.wikipedia.org/wiki/Inflammatory_breast_cancer, http://en.wikipedia.org/wiki/Triple-negative_breast_cancer
Image: http://medgadget.com/wp-content/uploads/2006/11/Fantastic-Voyage-200x290.jpg

Chemo Killed Colds?…and Other Weird Thoughts

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…

My wife’s down with a coughing, miserable, fever-full something-or-other, probably the most recent form of the noravirus...

Working in an elementary school, she’s usually immune to whatever plague is making its way through the general population. But when something smacks into the school and it’s new, and the kids are staying home in droves…well, the staff usually gets it and it wipes them out, too.

So she’s down for the last day before Christmas Vacation.

It wasn’t like that during chemo. We’ve talked about it before. All of the normal illnesses seemed to give way in front of the onslaught of Taxotere (http://breastcancerreaper.blogspot.com/2011/10/whats-it-do.html), Adriamycin (http://breastcancerreaper.blogspot.com/2011/10/adriamycin-whats-it-do.html), and Cytoxan (http://breastcancerreaper.blogspot.com/2011/11/cytoxan-whats-it-do.html), grouped with Neulasta (http://breastcancerreaper.blogspot.com/2011/11/neulasta-whats-it-do.html).

But was that truth or only appearance?

Appearance, I guess (http://www.cdc.gov/cancer/preventinfections/patients.htm); though the FACT was that my wife got sick with garden-variety colds and infections less often while she was taking chemo and a reasonable conclusion would be that her blood would be highly toxic to anything else that got into her.

BUT…what about neulasta (the brand name of a compound called PEG-filgrastim)? If white blood cells fight off disease and neulasta BOOSTS the white blood cell count…

I did a lengthy search, but can find virtually NOTHING regarding people who have taken neulasta without having some sort of disease. While one of the side effects of using neulasta is a decrease in mineral bone density, there don’t seem to be any other consistent and wide-spread reactions (of course, there are isolated incidences of nausea, etc. One person even reacted by getting horrible pocks of dead and dying flesh (called Sweets Syndrome)).

It would be interesting to find out if there have been instances of people who took neulasta without having any sort of illness. Would they have a super-immune system? Would they sail through life without illness? Don’t know. The intent of neulasta injections coupled with chemotherapy is to boost the immune system’s response in order to ward of infections during the treatment. That’s what it did for my wife.

The question I have is that if it did that during chemotherapy when the immune system was weak; what would it do for a HEALTHY immune system?

Any anecdotes and web connections would be appreciated!

Image: http://i.livescience.com/images/i/000/003/047/iFF/0904-immune-system-sick-02.jpg?1296073869

Change, Change, Change...

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…

The oxymoron aphorism, “Change is the only constant in the universe” can be laid on the breast cancer experience.

In addition to changing clinics and doctors, my wife also changed medications asking her doctor to take her off anastrazole to letrozole.

At first, the change was for the better – the aches and pains diminished, her feet and legs (the place where the pain manifested itself most obviously) were USABLE! Then, two weeks later, the pain came back with a vengeance.

So NOW what?

What is it about aromatase inhibitors (OK – so what does THAT mean? Aromatase is a thing called a “catalyst” – sort of like the silver in a catalytic converter in your car’s muffler that changes BAD exhaust into HARMLESS exhaust that’s mostly water, carbon dioxide plus carbon monoxide (bad stuff to people). It makes male hormones into female hormones.) that causes pain?

The AIs (not Artificial Intelligence, Aromatase Inhibitors!) can cause joint pain akin to arthritis (of which there are over a hundred forms).

HOW does it cause the arthritis effect? It does it by causing less calcium than usual to be deposited on the bones, increasing their friability (“breakableness”) and make it so that the joints aren’t as strong as usual. Aging reduces the amount of water in the cartilage that rests between the bones and keeps the bones from rubbing together. The AIs make that a bit worse.

But what about muscle pain? How do AIs affect muscular pain? “...aromatase inhibitors...are less toxic than chemotherapy...[but]...may cause severe musculoskeletal discomfort, including pain and stiffness in the hands, wrists, knees, hips, lower back, shoulders and feet.”

“Antonella L. Rastelli, MD, assistant professor of medicine and first author of the study published online in the journal Breast Cancer Research and Treatment. ‘We don’t know exactly why the pain occurs, but it can be very debilitating — to the point that patients decide to stop taking aromatase inhibitors...There is some evidence that patients who experience the drugs’ side effects are less likely to see their cancer return, providing even more incentive to help these patients continue taking them.’"

Check. That’s what my wife is feeling right now!

So what did they do? “So Rastelli’s group recruited 60 patients who reported pain and discomfort associated with anastrazole...Half the group was randomly assigned to receive the recommended daily dose of vitamin D (400 international units) plus a 50,000-unit vitamin D capsule once a week. The other half received the daily dose of 400 units of vitamin D plus a weekly placebo. All subjects received 1,000 milligrams of calcium daily throughout the study...results show that patients receiving high-dose vitamin D every week reported significantly less musculoskeletal pain and also were less likely to experience pain that interfered with daily living.”

Remember – I just read articles and interpret them. I AIN’T NO DOCTOR! Just a man who thinks he’s sorta smart. Talk to your doctor before you do ANYTHING with drugs, vitamins or any stuff like that!

Always remember: “Change is the only constant in the universe.”

Resources: http://news.wustl.edu/news/pages/22523.aspx
Image: http://www.fitandfreeemily.com/wp-content/uploads/2012/03/IMG_0267.jpg

BREAST CANCER RESEARCH RIGHT NOW! 5: 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…

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.aacr.org/home/public--media/aacr-press-releases.aspx?d=2990

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! Asking ANY woman to put up with TEN YEARS of the above symptoms seems...well, I can image exactly what Sigourney Weaver's character would have to say about that.

References: http://www.rxlist.com/arimidex-drug/consumer-side-effects-precautions.htm, http://www.rxlist.com/femara-drug/consumer-side-effects-precautions.htm
Image: http://api.ning.com/files/*2LfGNoQgJdhwDRUXaLxKDrxyAtJMSSqzfRVecGw4kMgES0WYUTBAsfuEL2RP9oWN3ErUw*vYuhh8GnteT9NiOeu21Mxjg2V/quest.jpg

Craziness Ensues, Postings Interrupted

Conferences at school. Craziness at school. New cabinetry in the kitchen and internet down for hours at a time.

Missed my post Thursday at POSSIBLY IRRITATING ESSAYS. Can't do my post at GUY'S GOTTA TALK ABOUT BREAST CANCER...either.

Sorry all.

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

A Fantastic Cancer Voyage Chapter 1 I

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 with my dad while eating peanut butter toast and drinking hot chocolate.

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. Of course, they succeed in the nick of time JUST before the shrink ray effect wears off and the ship (and the people) grow back to normal size – having a slightly detrimental effect on the world leader into whose head they were injected.

What would a FANTASTIC VOYAGE: Breast Cancer look like?

Well, seeing that I’m a writer and this is my blog, I’m going to try something new (like the BREAST CANCER RESEARCH NOW! feature). 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 – that will all depend on how my wife’s continuing cancer progress moves. She has changed hospitals (more on that next week after the first visit) due to continuing issues with travel time and…services that seem to be lacking there, as well as doctors who say, “You don’t have any symptoms, so you must be fine.” At any rate, more on The Move next Saturday.

For now:

Chapter 1

“Why would we risk all-out war with the SinoIndian Arc just for one person?” Alex Benton asked.

Dr. Olubunmi Nwagbara shook her head and said, “She’s more than a single person. And she 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.”

Benton sat down in his swivel chair and leaned back, looking out the window. The last stages of a Minnesota winter gusted sleety snow against it, streaking the smoky glass. A steady stream of ground traffic far below moved in the afternoon crush of rush hour. His office on the recently completed Thirty-First Floor was not only a mark of his meteoric rise – it was currently a pain in his backside. “What’s so special about this woman that we have to risk world war to treat her?”

Olubunmi – Ohloo to her close friends – opened her mouth to reply.

Benton waved her reply away as if he were swatting at carrion flies as he said, “I know she’s supposed to be ‘The Last Best Hope For Peace In The World’ but why her?” This time he looked at Ohloo.

She pursed her lips then looked out into the grayness of the late winter storm. Finally she said, “Have you ever heard her speak?”

His lips thinned then he shook his head. “I don’t have time to waste on fluffy New-Age nonsense.”

Ohloo checked her irritation. She’d worked Benton for nearly a decade – not worked “with” as he’d never been a team player – but she’d learned how to direct his considerable energy and determination. She took a deep breath and said, “What she says is more than fluffy, Lex.”

He shot her a look. They rarely engaged in simple nicknames. He said, “She says she’s a Catholic-Buddhist-Hindu-Daoist! As a long-time Catholic, I find that offensive!”

Ohloo smiled and said, “As a life-long evangelical Christian, there are parts of me that cringe at that designation, too. But...”

“There’s no ‘but’ in Catholicism!” His glare narrowed, “I didn’t think there was much wiggle room in evangelicalism, either.”

“As far as belief goes, there isn’t. But what Master An has done...”

He waved her away again. “I know what she’s done. I can skim the websites as easily as you can.”

“Then you know why we have to try this.”

“I also know what Beijing and New Delhi are saying and right now it’s their opinion – and their covert operations people – who have my attention. What are we supposed to do about that? I can’t risk turning Rochester into a war zone! We have sick people here!”

Ohloo said quietly, “Master An is also sick. Her cancer is inoperable right now and she has, at last report, possibly four weeks or a bit more left before she dies.”

“So? One more wacko mystic dying shouldn’t be our concern!”

“As far as I can tell, she’s not a ‘wacko mystic’. She’s a good woman – and our treatment may very well work.”

He snorted, glaring out the window. Finally he said, “I don’t see how uploading your brain into a microscopic submarine in her bloodstream is going to help destroy the cancer.” Ohloo opened her mouth to respond, but he cut her off with a gesture again. “I know. I’ve watched FANTASTIC VOYAGE, also. It was one of my favorite movies as a kid. But this isn’t a movie and it’s not a science fiction story. It’s real, and we’re talking about real medicine here.”

“I am too, Lex. I think I can do this.”

He grunted and without looking at her, he said, “I think you can, too.” He spun in his chair and stood abruptly and walked past her, “But if you die, Ohloo, I’ll never speak to you again.”

The doors opened with a STAR TREK whoosh! and he was gone. Dr. Ohloo watched the slush slap the windows of the Gonda building. Smiling faintly, she said, “Why Lex, I didn’t know you cared.”

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

BREAST CANCER RESEARCH RIGHT NOW! 3: Smallpox?!?!?!?!?!?!?

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.cancercompass.com/cancer-news/article/42235.htm

Use SMALLPOX TO STOP BREAST CANCER????

OMG! OMG! OMG! When will it stop????? Won’t we all get smallpox now????

*sigh*

I can just hear the reactionary right and the ludicrous left going ballistic if this were to ever get beyond the mouse-testing phase.

Of course, it’s perfectly all right to use a deadly neurotoxin producing bacterium, Clostridium botulinum to make sure my face don’t get all wrinkly as I age. (Oops – I can’t have an opinion on this because I’m a big, old, fat, white guy and I don’t know and cannot possibly understand how the culture and society that has been fostered by, used by and perpetuated by ME (personally) – could possibly understand why I would feel compelled to inject my face with a protein so deadly, “…that one-millionth of a gram of them can kill a man and one pint would be enough to kill everyone on earth.”) -- but SMALLPOX?

Smallpox is a disease that was certified in 1980 by the World Health Organization as eradicated from Human populations. A true scourge of Humanity, it has existed in one form or another since 10,000 years before the Common Era and caused the death of an estimated 300,000,000 people, most of them children. Its relatives abound in the world and while not all of them are lethal to Humans, all but the most common still exist.

Smallpox – Variola major and Variola minor are certifiably deadly, far more deadly than Clostridium botulinum – but with a potential to bring far more help and hope than botulism ever did!

One of the relatives of the smallpox viruses has the creative name, GLV-1h164 has been used to attack a particularly nasty form of breast cancer. “Triple-negative” breast cancer “...is an aggressive form of breast cancer that accounts for between 10 percent and 20 percent of all cases. Younger women (under 35) are the most vulnerable, as are black and Hispanic women.”

These kind of breast cancers, while they maintain a relatively low profile because of their relative rarity, have proven a difficult cluster of diseases to conquer. We can’t even control them.

Most breast cancers respond to hormonal therapy by allowing cancer toxins to attach directly to the cells and kill them. Triple-negative breast cancer cells are NOT sensitive to hormonal therapy, nor are they destroyed by immune therapy.

In the initial tests, “...roughly 60 percent of the triple-negative breast cancer tumors shrank...while the other 40 percent showed evidence of tumor cell death...”

The use of cousins of smallpox seems to be effective, at least in current trials. Is it wise to hold such a small hope that good could come from group of terrifying scourges?

Absolutely YES! Let’s hope the continued research leads to a powerful weapon against triple-negative breast cancers!

Image: http://www.thecanadianencyclopedia.com/featuremedia/feature103/Smallpox.jpg

Breast Cancer. Lung Cancer. Liver Cancer. Skin Cancer. Are All Cancers Created Equal?

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…

My wife and her sister are breast cancer survivors.

My wife’s mother died of lung cancer.

My wife’s brother has liver cancer.

My sister, sister-in-law, brother and dad have had skin cancer.

Are all cancers created equal? Are some “worse” than others? Are some more survivable? Are some “the worst kind of cancer to have”?

First order of business is to define cancer in a general way. Most people “know” that cancer happens when cells grow out of control.

But is this general wisdom correct? From the American Cancer Society: “Cancer is the general name for a group of more than 100 diseases. Although there are many kinds of cancer, all cancers start because abnormal cells grow out of control. Untreated cancers can cause serious illness and death.”

By way of comparison, from the Cancer Council of Australia: “Cancer is a disease of the body's cells. Normally cells grow and multiply in a controlled way, however, if something causes a mistake to occur in the cells' genetic blueprints, this control can be lost. Cancer is the term used to describe collections of these cells, growing and potentially spreading within the body. As cancerous cells can arise from almost any type of tissue cell, cancer actually refers to about 100 different diseases.”

And from the Chinese Anti-Cancer Association: “Jia Kun, a Chinese traditional medicine oncologist writing in 1980, says that whatever upsets normal body function can lead to tumor formation, causing cancer. Tumors are the end result of a prolonged process of accumulation and densification of tissue due to the persistent stagnation of qi and blood, which, if unrelieved, becomes toxic, critically damaging the healthy function of the organ systems.” [My half hour search of the website did not turn up a clear definition of what Chinese medicine considers a ‘tumor’.]

At any rate, it seems pretty clear that the world knows that there is SOMETHING going on no matter how you explain it.

As to the “worst” cancers, this article published two years ago on MSNBC (http://www.msnbc.msn.com/id/39102353/ns/health-cancer/t/top-deadliest-cancers-why-theres-no-cure/) rates the cancers based on the number of deaths. Other factors that work into this are how common a cancer is determines if there are treatments and detectability of the cancer can also affect how deadly it is.

As I wrote two weeks ago, “…cancers of ALL TYPES need to be destroyed…”

Today’s oncologists can identify some 100 cancers. But how? And HOW does cancer start?

“Cancer…does not develop all at once as a massive shift in cellular functions that results from a mutation in one or two wayward genes. Instead, it develops step-by-step, across time, as an accumulation of many molecular changes, each contributing some of the characteristics that eventually produce the malignant state…the time frame involved also is very long— it normally takes decades to accumulate enough mutations to reach a malignant state...Cancer is, for the most part, a disease of people who have lived long enough to have experienced a complex and extended succession of events…each [cell] change is a rare accident requiring years to occur, the whole process takes a very long time, and most of us die from other causes before it is complete…[P]eople who experience unusual exposure to carcinogens... inherit predisposing mutations…increases the likelihood that certain harmful changes will occur…[and] developing cancer during a normal life span…[I]nheriting a cancer-susceptibility mutation means [it has happened in] all the body's cells. In other words, the process of tumor formation…may take place in one or two [decades]…[C]ancer as a multistep process also explains the lag time that often separates exposure to a cancer-causing agent and the development of cancer.”

The how and why and where are fairly well understood today. Doctors, molecular biologists, geneticists, biotechnology experts and oncologists are working constantly to meet the 100 different cancers head on, to understand the mechanisms that cause them – and finally to create a strategy that will not only slow the progress of cancer cell growth down, but stop every form of cancer in its tracks by discovering the key to shutting cancer down.

Resources: http://www.chinese-medicineworks.com/pdfs/cancercmbeinfieldkorngold.pdf, https://science.education.nih.gov/supplements/nih1/cancer/guide/understanding2.htm

Image: http://www.omnimedicalsearch.com/conditions-diseases/images/cancercells.jpg

When Are You Back Up To Full Speed? Pick e) All of the above

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…

Working full-time as a classroom aide for a kindergarten class is a draining experience even for the young and able-bodied! The classroom teacher is a young woman with loads of energy, enthusiasm and ideas – and SHE is often worn out at the end of the day! How could my wife possibly expect to keep up with her – as well as chasing after 25 five-going-on-six little kids, and closely monitoring and recording data on one child in the class who needs LOTS of supervision?

She works at the elementary school in the district with THE highest level of poverty. The neighborhood her school is in is primarily made up of apartments, has an airport, several vacant lots, one partially burned out gas station, suburban row houses all built within weeks of each other in 1956 and beginning to look their age. The environment is dilapidated, the school is dilapidated, the charter school next door to her school siphons off the best and the brightest leaving her school with more than its fair share of challenges.

She comes home exhausted every day and wonders when she’s going to feel better. Lymphedema is a concern still – nah, it’s downright worrisome. Yesterday she broke out in hives because she didn’t rinse out her compression sleeve well enough – because she was tired. Her feet are sore. Her knees and joints are sore (though that has gotten better since she’s gone gluten free) and she doesn’t remember feeling this crappy BEFORE the surgery, chemo and recovery.

So when WILL she feel like she used to? When will she feel normal?

In a transcript of a panel discussion on “Life After Breast Cancer” posted at http://secondopinion-tv.org/episode/life-after-breast-cancer, one of the panelists notes, “It's not possible to ‘flip a switch’ and immediately go back to a former life at full throttle. The body is in repair mode and women have to pace themselves. In fact, it may take a year or more to regain a sufficient level of energy and sense of well-being.”

Debbie Woodbury, commenting on a question at Talk About Health (http://talkabouthealth.com/how-long-did-it-take-for-you-to-feel-normal-again-after-breast-cancer-or-do-you-ever-feel-normal-again) points out: “Emotionally, it took even longer [than a year] to heal, but I will never be the same as I was before the cancer...no cancer survivor I've ever talked to...has ever told me that they were able to return to the normal life they had before they were diagnosed. It just doesn't happen. Cancer redefines normal.”

What exactly is a repair mode? Technically “recovery” has to do with the initial surgical recovery, but, “After your cancer treatment, as a cancer survivor you're eager to return to good health. But beyond your initial recovery, there are ways to improve your long-term health so that you can enjoy the years ahead as a cancer survivor. The recommendations for cancer survivors are no different from the recommendations for anyone who wants to improve his or her health: Exercise, eat a balanced diet, maintain a healthy weight, avoid tobacco and limit the amount of alcohol you drink. But for cancer survivors, these strategies have added benefits. These simple steps can improve your quality of life, smoothing your transition into survivorship.”

This is recovery.

“But doctor, will I ever be able to play the violin after I recover?”

“Of course!”

“That’s amazing! I never played it before the surgery!”

Ba dum bum. Everything people have blogged leads me to believe that the repair mode of post-cancer recovery is long and difficult. Of COURSE you feel better than you did immediately after surgery. It seems like things are getting better fast. But that’s different. Cancer is invasive and if you’ve undergone a prolonged chemo or radiation therapy, then your entire body has been weakened – from head to toe.

“You may have permanent scars on your body, or you may not be able to do some things you once did easily. Or you may even have emotional scars from going through so much. You may find that others think of you differently now - or you may view yourself in a different way…”, “...those who have gone through cancer treatment describe the first few months as a time of change...finding out what's normal for you now. People often say that life has new meaning or that they look at things differently now. You can also expect things to keep changing as you begin your recovery. Your new ‘normal may include making changes in the way you eat, the things you do, and your sources of support...follow-up care. Should I tell the doctor about symptoms that worry me? Which doctors should I see after treatment? How often should I see my doctor? What tests do I need? What can be done to relieve pain, fatigue, or other problems after treatment? How long will it take for me to recover and feel more like myself? Is there anything I can or should be doing to keep cancer from coming back?”

All of this – and MORE – are things to factor into recovery.

The answer to the ultimate question, “So when WILL she feel like she used to?” may not have a clear or solid answer. I suppose the best response might be, “e) All of the above”...

Resources: http://www.cancer.gov/cancertopics/coping/life-after-treatment/page1/AllPages
Image: http://rlv.zcache.com/define_normal_button_magnet-p147413810323095621envtl_400.jpg

“Why are so many people dying of cancer?”

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…

Not the first person who ever asked this; not the first time we’ve ever asked it – http://breastcancerreaper.blogspot.com/2011/06/why-do-so-many-women-have-breast-cancer.html is there an ANSWER?

Anecdotally, I’ve heard that the reason so many people are dying of cancer is because we simply live longer. The average life expectancy of all Humans on Earth is 67.2 years.

So? That seems like a really short time! How can that be? What did it USED to be? Hmmm…according to Wikipedia (always my initial go-to source), the average lifespan in Greece, Rome, and Inca/Mayan times was 28; in the Caliphates of northern Africa and the Middle East it was 35. That was what, like 2500 years ago? Right.

So it’s pretty much doubled.

I’ve heard that the reason we get cancer now is that even though cancer was PRESENT then, it didn’t have enough time to kill the person it was growing in. People died of old age before symptoms of various cancers like unintentional weight loss, fever, being excessively tired, and changes to the skin appeared. As well, coughing, difficult or painful swallowing, changes in bowel habits, easily felt masses, coughing up blood, or blood in the bowels, the bladder, or the uterus, localized pain or even painless swelling, and possibly a buildup of fluid in the chest or abdomen could be attributed to lots of things in the ancient world, up to and including the Black Death!

While Hippocrates observed tumors of various types (including breast cancer) in ancient times when life expectancy was only 28 years; and the Egyptians were actually removing tumors 2000 years before the birth of Christ, no one had a real handle on cancer until scientists and doctors started to pool their knowledge in the 1700s and 1800s. By then, life expectancy had increased to about 36 years.

“….cancer…[has] always been with us. People have been getting cancer from the earliest days of their existence (whenever that might be). Heck, most animals get cancer. Even some plants get cancer-like growths...the potential for cancer is in each and every living creature…we also know quite convincingly, and all nonsensical prehistoric arguments aside, that the incidence of cancer has increased dramatically over the last century.” (Written by a man who has no credentials except that he likes to write disparagingly…).

“Incidence: In 2000-2004, across Australia, there were 3,083 cancers diagnosed among Aboriginal and Torres Strait Islander people. The most common cancers diagnosed among Indigenous males in this period were of the lung, bronchus and trachea (19% of all male cancer reported), prostate cancer (10%), colorectal cancer (10%), cancer of unknown primary site (6%), and lymphomas (5%). The most common cancers diagnosed among Indigenous females were breast cancer (25% of all female cancer cases reported), cancer of the lung, bronchus and trachea (12%), colorectal cancer (9%), cancer of the cervix (7%) and cancer of unknown primary site (6%). In the same period, more new cases of cancer were reported among Indigenous females (1,598) than Indigenous males (1,485) compared with the non-Indigenous population.” (http://www.healthinfonet.ecu.edu.au/chronic-conditions/cancer/reviews/our-review).

So, what about cancer among non-aboriginal Australians? Go to the site above and scroll down to the chart. If Aboriginal Australians, who eat pretty much the way they always have (this isn’t just “city aboriginals” – this is ALL of them), have cancer – some types being more common among THEM than non-indigenous Australians. Statistics speak more loudly than someone who uses the phrase “nonsensical prehistoric arguments”.

Conclusions? None really except to say that cancer has been with us for a long, long time. There are some cancers that were more common then, some are more common now. “Why are so many people dying of cancer?” So many is a relative term. And the fact is that it’s not important, really. Even mister “nonsensical” and the Australian government will agree that cancers of ALL TYPES needs to be destroyed.

Resources: http://en.wikipedia.org/wiki/History_of_cancer, http://en.wikipedia.org/wiki/Cancer, http://en.wikipedia.org/wiki/Life_expectancy, http://www.jonbarron.org/alternative-cancer/historic-growth-rates-of-cancer

Image: http://www.cancerresearchuk.org/prod_consump/groups/cr_common/@abt/@gen/documents/image/cruk_logo_c.jpg

And Onward Against 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…

One thing leads to another.

In this case once my wife rammed her hand against the wall last Thanksgiving; once the swelling began – subtle and mostly unnoticed; once she had trigger finger in which the tendon running through a particular finger swelled a bit and no longer slipped and slid through its usually smooth opening; once the doctor gave two shots to the finger with cortisone that certainly cured the trigger finger but made the swelling worse; once the cancer doctor pooh-poohed the possibility lymphedema occurring in one of HIS patients!; once the practitioner who was supposed to order the compression sleeve and glove; once she finally went to a practitioner who did arm massage AND remembered to order the garments…

Now it’s a daily, sometimes painful, always tedious, usually uncomfortable battle to wrap the arm before work, wear the compression glove (AND figure out how to clean it after holding the hands of two dozen grubby kindergartners), and a monstrously over-sized oven mitt looking nighttime compression sleeve (and hoping she doesn’t take it off in the middle of the night without knowing it…)

So, you think it’s tedious reading this?

Try living it.

Just like with the 18 repeats of the every-three-week chemo treatments, healing is not coming fast. In fact, it seems to be not coming at all.

What is it that the massage therapy and oven mitt treatment and daily wrapping is trying to accomplish? The answer to that is simple: push the lymph back into the system when some of the pumps are missing.

As I explained before, lymph carries the white blood cells that fight disease. That’s a good thing, right? Yes. If you get a cut on your finger, the lymph with its white blood cells it pushed through your body not by a heart, but by the bending of your arms, legs and neck. The movement of the muscle squish thumb-sized bags called nodes and lymph squirts out, rushing to the site of the infection.

The squished nodes start to expand again, sucking up spare lymph and sending it on its way.

Of course, these are the very nodes that become infected with breast cancer cells and are cut out.So – if you have fewer nodes, they can’t pump the lymph away and it stays.

And stays.

And stays.

The arm or leg or foot or neck swells with lymph. That is lymphedema.

Sending the lymph back to where it belongs is like trying to replace the ruined water turbines inside of a monstrous hydroelectric dam with hand pumps duct-taped to the outside of the dam. While it can work, the process of pumping them is a daily, sometimes tedious, usually uncomfortable battle before work…

My wife battles lymphedema constantly as well as working at a challenging job with very needy children. I do what I can to support her, but that usually amounts to being a cheer section and sometimes massaging the arm to drain the lymph back down to its home nodes where it belongs.

It’s a long, hard battle and I continue to stand on the sidelines, struggling with what I can and cannot do.

Image: http://www.nationalgeographicstock.com/comp/04/528/1347295.jpg
http://static.flickr.com/79/256223509_4d729312d2.jpg

BREAST CANCER RESEARCH RIGHT NOW! 2: Targeting How Cells Use Fat To Grow

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.medicalnewstoday.com/releases/249728.php

One of the ways the medical world is exploring cures and treatments for breast cancer is looking at the chromosomes of individuals with different types of breast cancer. Many people undergo tests to determine if the type of cancer they have has a component that they inherited from their family.

Another part of the genetic picture they look at is how the body responds to cancer.

Two cancer researchers (see link above for the technical article) published papers recently that show some disturbing news. In essence, they show that while certain genes will make your cells either really GOOD at burning fat or really BAD at burning fat, if your genes code for good fat burning ability, they might allow the cancer to grow FASTER because they are good at producing energy.

In the September 2012 issues of The Journal of Clinical Investigation and Nature Medicine, researchers write that they have been studying a gene that slows down cancer cell growth for more than 20 years. The PML (promyelocytic leukemia protein) is a tumor suppressor gene that regulates metabolism via the fatty acid oxidation (FAO) pathway – or controls how fast or slow a cell burns up its fat. The faster it burns up fat, the better it grows. The slower it burns up fat, the more fat gets deposited in places you don’t want it – like the belly, thighs and arms.

So you WANT it to be efficient! Yeah!

But if your regular cells burn fat fast, then that means BREAST CANCER cells in particular will do the same thing…therein lies the problem. We know that obesity and Type 2 diabetes are contributing factors to breast cancer, so how can this be treated?

Researchers conclude that “Our next logical step will be to identify a potential path for therapeutic intervention through the opposing Scylla and Charybdis-like threats and benefits of this pathway (referring to the two sea monsters that sailors of mythology had to navigate). Through pharmacological dosage and scheduling, we will come up with a way to reap the benefits of [the fat burning gene] while reducing or even eliminating its risks. The opportunity is there since we have drugs that can [slow down the breast cancer cell’s metabolism without affecting regular cells or speed up regular cell fat metabolism without speeding up cancer cell metabolism], and we have begun testing these concepts right away [using our research animal subjects].”

Image: http://download.cell.com/images/journalimages/1550-4131/S1550413112X00093_covhighres.jpg

I Have To Keep Telling Myself That The “New Normal” Isn’t The “Old Normal”

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…

Following Labor Day, school started in Minnesota this week and that means that my wife and I are back into the swing of things again full time. Not that I haven’t been there since the second week of August; not that she hasn’t been training up on new and updated classroom management and methodology…

But this past week was the first week with KIDS!

Two miles of walking a day is pretty much a regular form of exercise for her. But the beginning of the year is ALWAYS harder after a long summer of NOT walking two miles a day!

This fall was no exception – except that it was harder than ever.

Maybe it’s natural aging – even for me, my knees aren’t what they used to be and I have a knuckle or two that feel like they may have a touch of arthritis every once in a while. I can’t stand up without grunting a bit and I have to tell my two-year-old grandson to “slow down! Grandpa can’t keep up with you!” That seems pretty normal for me.

But the first two days of school were murder on my wife! Not joint pains like with me, but muscle aches and pains to a point where she had to take an unnatural number of over-the-counter pain killers. Not that she hasn’t had aches after a day’s hard work. She chases kindergartners from here to eternity and has been doing it for several years. Before that, she did daycare for 17 years. Certainly lots of aches and pains.

HOWEVER…I was talking to another friend of mine, a long-term survivor of breast cancer and she pointed out that while she was pretty sure she was all set to get right back into life and start swinging again, she discovered that while she felt better than she’d remembered feeling in a long time, the FACT was that she was recovering from a recent bout with cancer, surgery and chemotherapy.

The FACT, she discovered, is that a Human body doesn’t bounce back from an ordeal like that quickly. We’re not talking about a bad cold. We’re not talking about walking pneumonia. We’re not even talking about flat-out-on-your-back pneumonia.

We’re talking about a disease so invasive, it can grow to lethal proportions in less than twelve months. We’re talking about surgery as radical as the amputation of a limb. We’re talking about being injected with chemicals so dangerous the handlers must wear goggles, gloves, masks, booties, and dressing gowns lest any get on their skin and cause profound BLISTERING!

No one in their right mind would expect such a victim to recover from such treatment in less than a year. Yet your average breast cancer survivor EXPECTS THAT OF THEMSELVES! They fully expect to go back to a full training regimen training for the Olympics or the Tour de France; they expect to return to caring for children and home without missing a beat; they expect to take up the reigns at whatever career they had to slow down for, snap them and get back up to full speed yesterday!

So – to those of you supporting a wife, girlfriend, mother, grandmother or partner through breast cancer – stand tight beside them, ready to offer an elbow lift if they stumble or slow down and to continue to work beside them toward as complete a recovery as EACH PERSON is capable of. It’s hardly easy, but has proven to be another, newer role I’m growing into.

Image: http://www.wheatlandsalem.org/mediafiles/announcement-the-new-normal-project.jpg

A Friend Scare, The Minnesota State Fair, The One Year Visit and People Not As On-Top-Of-Things As They Might Be…

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…

A good friend of mine, a colleague at work, had a scare four days ago. In for a regular checkup and knowing she’s been cancer free for a bit over two years, she posted on FB that she was going back in for some more tests and a biopsy. The post read, “hoping for the word ‘benign’ tomorrow (had my mammogram today)...and biopsies are not pleasant (my 4th). I knew what was about to happen, when they brought me to the ‘fun room’ after taking 2 additional pics”

Praise God, she DID hear the words benign the next day. I hugged her so hard, she had to say, “Watch out for the boob!”

Apologizing profusely, I replied, “I just couldn’t help it! Sorry! I’m so...so...thrilled for you!”

What I meant, paradoxically, was, “I am so relieved for ME.”

Once again, this brought back to mind the fact that there is such a thing as aggressive cancer. That successful treatments do NOT always beat the monster to death, and we STILL need a cure. That’s what I’ll be riding for next year. That’s what I pray for every time I lift my eyes and heart up to the Lord.

The next event that day was OUR visit to the oncologist. I went with, but didn’t go in with my wife. Not for any more profound reason than that I didn’t want to get in the way. She came out after an hour or so smiling peacefully. “The doctor said there’s virtually no scar tissue. He asked me if I remembered the chemo.” My wife’s smile turned from peaceful to ironic with a few muscle movements as she said, “Oh, yes. I do. Every moment of it.” How can the Human face be so expressive, going from peace to irony with tiny twitches of electrical impulse? I don’t know, but it happens. She added a moment later, “He said he’d have been surprised if anything came back. The treatment was one of the most aggressive he’s ever done.”

*sigh*

We can be a peace for a bit more, now. Yet I’ll never forget the terror of last year; nor the spectre of possibilities in the future. I’ll deal. I can’t get used to it, but I’ll deal. “Faith. Hope. Love. These three; but the greatest of these is love.” (I Corinthians 13:13) That one I can do best after 25 years of marriage – that one has not dimmed, rather it’s grown stronger. That I can do...

I was at the Minnesota State Fair right after the appointment. In the Health Building, I wandered past the Caringbridge stand and stopped to tell them how grateful I am for their ministry/work/whatever. They asked if I wanted to have my picture taken and (of course!) I said, “Sure.” They said that if I tag it and get other people to tag me, a company that makes cards will donate a dollar for each tag, up to $2000! So, if you follow this link, you can tag me (I think…I don’t entirely get this FB tagging thing…) https://www.facebook.com/#!/photo.php?fbid=10152099135520241&set=a.10152094718910241.903860.86180025240&type=1&theater

As to people not doing exactly what they’re supposed to do? My wife was supposed to have a compression sleeve, had gotten the measurements taken and was assured the sleeve and hand would arrive soon by the Nurse Practitioner. Three weeks later, she had tried calling person; tried emailing the person – and was told the NP had no recollection of have done the measurements and couldn’t remember my wife. Grrrr….and what was she supposed to do about THAT? Lymphedema is serious business! How could someone “oops, I forgot” and then lie about it? I’m reasonably certain my wife wouldn’t LIE about someone measuring her arm!

A second NP did the work as well as noting that she had some lymphedema around the upper abdomen as well and gave my wife a compression bra as well! OK – now things are moving.

The lesson here?

YOU ARE YOUR OWN BEST ADVOCATE! Stay on top of everything and question everything – you don’t have to be mean about it, but this is serious stuff here! You can ask questions politely, just like your parents (and kindergarten teacher and middle school teacher and high school teacher…) taught you to do. But ASK!

Image: http://images.agoramedia.com/joybauer/cms/high-cholesterol-improve-heart-health-gallery-woman-talking-to-doctor-320.jpg

Chemotherapy: One Year Later and GODZILLA vs Breast Cancer

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…

Next Thursday, I’ll be going with my wife to the One Year Appointment. At the end of August, 2011, her chemo was done. Since then, it’s been a regimen of daily pills, bouts of lymphedema and struggles with balancing medications (cholesterol, synthroid, pseudephedrine, and so on).

HOWEVER, it’s also been a year filled with all kinds of joy: haircuts, camping and travelling (which stopped last summer), party times with friends without exhaustion setting in, birth of a granddaughter, play time with the grandkids and walks in the park, 25th Wedding Anniversary date to a dinner theater, parting with our daughter, three times to fireworks, and plans for our foster daughter to go to New Zealand. A rich life, to be sure.

NOT that life before cancer wasn’t rich, but now there’s a new appreciation of life. I don’t take traveling for granted any more. I certainly don’t take CAMPING for granted anymore: the roughness of the terrain, distance to the bathrooms and the bugs and darkness are tough enough for an able-bodied old man like me. They would have been very, very difficult for someone in the throes of chemotherapy! The fact that we could celebrate 25 years together after a hellish year following the initial diagnosis is spectacular!

The worry is much less as well – last summer, every time I went to work, I worried. It made for a pretty bleak time in some ways. I tried to keep my Scandinavian stoicism well-oiled and practiced, but I’m sure the anger, fear and bitterness leaked through (ask my students to see if I managed).

Not this summer! We’re even planning on going to the Great Minnesota Get-Together (for those of you reading this who are not from Minnesota, it’s also known as the Minnesota State Fair) after the One Year appointment to walk about and eat ourselves silly – and probably watch the fireworks show just before we go home (making it four fireworks displays we’ll have seen!)

Life is sweet – but let me add a caveat: life is NOT “the same” as it was before the breast cancer diagnosis of March 2011. Every moment, every event, every laugh, every fireworks explosion is a cause for celebration. Every hug from our grandkids, every tear-inducing laugh during cards, every walk to the park to throw the dog’s rope, every plan we make for the new cabinets and every trip to Target is cause for sighing in wonder at the things that make for life.

I am a blessed man; even with that, I extend my deepest sympathies to those who have lost their mate, their love, their mother, sister, colleague or partner to this scourge. We WILL defeat it. Next August I WILL ride in the 2013 Breast Cancer Ride (http://www.breastcancerride.org/site/PageServer?pagename=Homepage)– and I will find a T-shirt that has Godzilla stomping out breast cancer!

Image: http://fc07.deviantart.net/fs70/i/2012/128/8/2/commission__burning_godzilla_vs_destoroyah_by_parakarry64-d4yz7f5.jpg

BREAST CANCER RESEARCH RIGHT NOW! 1: Some Breast Cancer Cells Are Fighting Back Against Treatments

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…

Starting today and running once a 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.

So here goes: http://www.sciencedaily.com/releases/2012/08/120809133851.htm

Disturbing news comes from the University of Colorado Cancer Center that some breast cancer cells have been discovered that are able to hide from chemotherapy drugs by changing their structure to look more like benign stem cells.

Breast cancer cells are gluttons for the hormones progesterone and estrogen. It’s what “feeds” them. Anastrazole uses that gluttony to target breast cancer cells. Following the cancer cell killing, DNA twisting and cell-division-interfering chemotherapy, the long-term, five-year treatment slows down the production of estrogen so that any breast cancer cells that survived the chemo will starve to death.

Some breast cancer cells are gaining this ability because of tiny proteins called microRNA and abbreviated miRNA (the image above is a model of a piece of miRNA). Discovered in the early 1990s and classified in the early years of the 21st Century, scientists had thought to use the miRNA to create drugs that would specifically attack breast cancer cells instead of taking out white blood cells and other normal cells.

What they found was that some cells had learned how to turn off a certain miRNA – and then don’t need progesterone any more. This means that the drugs targeting progesterone hungry breast cancer cells -- aren't being taken in by the cancer any more.

Now that they are aware of this cell behavior, the research HAS discovered a way to “turn off” one of the miRNA proteins that help hide the breast cancer cell. Right now it’s only been used in test tube trials. There’s a good chance that the procedure will make its way into human trials in the near future – and then be added to the arsenal of therapies used to fight breast cancer!

Image: http://us.123rf.com/400wm/400/400/molekuul/molekuul1201/molekuul120100019/12097694-3d-view-of-a-molecule-of-a-microrna-mirna-molecule.jpg

Camping For The Health Of It!

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…

We went Down South (instead of the traditional Up North) to do some HEALTHY camping among the Singing Hills, so I'll get back down to business -- and a NEW FEATURE next Saturday!

“My ______ had breast cancer and...” + Lymphedema Massage

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…

The world of breast cancer continues to be smaller and smaller.

At a wedding we attended a few weeks ago held on Spirit Mountain in Duluth, a former student of mine who has become a friend came up to us as we were leaving for the three hour drive home. He and I embraced as I got teary eyed again, then he embraced my wife and whispered in her ear. Then he got back to the groom business of greeting everyone else.

As we walked to the car, my wife said, “He whispered, ‘Keep on fighting’.”

A few days later, my wife asked me to ask him what he meant.

His reply: “My grandmother fought it for 15 years, in the end it was too much, but she never stopped fighting!!! Those 15 years, though hard fought, allowed her so many joys! [My new wife] also wises to express her regards. All things are possible!”

Different story, shrinking world: two nights ago, we went to a dinner theater in celebration of 25 years of marriage. My wife booked us a “pot luck” table – which means that there were six seats forming one table, so that we would be sitting with four others we’d never met before.

Ours were the center seats, across from each other. Shortly the others arrived and there were introductions all around and we began to chit chat pleasantly. Dinner ended, the show began then paused for a 20 minute Dessert Intermission. Chatting some more, the woman next to my wife asked about the layered athletic bandages on her arm. My wife explained they were for lymphedema treatment due to breast cancer.

The woman began an animated monologue explaining that she was a massage therapist and frequently worked with breast cancer survivors experiencing lymphedema.

The disease is everywhere. It seems that “everyone knows someone” who is being treated for or who has survived breast cancer. It makes for a small community; it makes for sympathy and strength all around.

It’s a GOOD thing that has happened despite the horror that brought it about, and so I rejoice that my wife continues to be a survivor with a powerful word!

Image: http://www.lgstudio.biz/pics/200710220726570.Breast-Cancer-Survivors-07.jpg