Breast Cancer Complacency: The Shock of Being a Tether Ball

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…

“And how’s your wife doing?”

“What? Fine. Why?” (My response after a momentary stupid look.)

“Well, with her breast cancer and everything. How’s she doing?”

Source: A recent conversation with someone I don’t talk

with much anymore because I moved my position.

As I shared above, my wife’s breast cancer odyssey has become something less than a moment-by-moment struggle. But then, I’m only speaking for myself. While she is my “beautiful woman. My life partner, my one coquette, the answer to my love's duet,” (Prince Edward, “Enchanted” (2007)), I can ONLY imagine what she feels on a daily basis. Because she doesn’t have regular chemo anymore; doesn’t have tubes in the thoracic cavity anymore; isn’t bald anymore; we don’t go to weekly doctor checkups...I sometimes forget that her body was abused by cells whose division mechanism was completely overridden by something we don’t understand completely yet.

I forget.

My bad, but I do because breast cancer didn’t invade ME.

I am an observer and it’s easy for me to forget that the war is not over. There are tens of thousands of others who found out yesterday…today…or will find out tomorrow that they have some stage of breast cancer.

I’m out acting like I was the center of the world and everything else revolves around me, when all of a sudden, I find out that I’m a TETHERBALL in a professional tournament (BTW – there’s no such thing as Olympic or professional tetherball, there IS a World Tetherball Association (http://worldtetherballassociation.com/).

I do, in fact spin around in my everyday life, oblivious to the fact that my wife suffered – and perhaps suffers still – from a monstrous disease fully as horrible as anything that has attacked Humanity since the dawn of time. I don’t think about it.

Then someone asks me how she’s doing and BAM!, it’s like the opposing team hits the tetherball. I’m traveling in the other direction, blithely ignoring the challenges and pain and fear that seemed to overwhelm me just a few months ago.

How can I BE that obtuse? How can I remain evermindful? How can I be so uncaring? How can I continue to support my wife in the lifestyle that, up until two years ago, only contained the words “breast cancer” in an abstract, tongue-clicking sort of way? I even write this blog once a week and I FORGET!

That translates into the tough question for me – how can OTHERS remain aware of breast cancer when I forget all the time?

What can I do to help others remain mindful that every three minutes, a woman is diagnosed with breast cancer?

First of all, I need to be continually aware that breast cancer is STILL an issue for my wife, as well as for every woman alive on Earth today. Breast cancer is not an AMERICAN issue. It’s not a black issue or an Hispanic issue or an Kenyan issue or a British issue – it is a Human issue and it is a disease that could potentially strike HALF OF THE HUMAN RACE!

Now what? I get to work:

1) I remain mindful

2) I remind others

3) I keep blogging

4) I offer a hand and shoulder to any man reading this who feels like he’s a tetherball in the deadly game of breast cancer.

All right. List written. Now for the rest of the plan!

Image: http://cdn.wl.uproxx.com/wp-content/uploads/2012/09/Olympic-Tetherball.jpg

Breast Cancer Is Like Weather...

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…

I’d started this out with the observation that my wife’s experience with breast cancer has been one of constant adjustment:

…adjusting to life without breasts – and STILL getting reminders from the doctor’s office to come in for her annual breast checkup...I’m NOT kidding, she finally had to call the clinic to ASK them to take her off the “reminder” list.

…changing medication, feeling better…and then feeling WORSE.

…asking for an “adult-sized” chair in the classroom of kindergartners she works with because it’s hard to sit in the kid-sized chairs when you have muscle aches and pains.

…constantly trying to find ways to make life less painful and more routine – for example, finding out from online research that taking capsules of capsaicin (the stuff they put in pepper spray to make it so effective) can relieve muscle and joint pain. No DOCTOR told her about it. Maybe they think it a “home remedy”? Harrumph!

…knowing when to rest and when to push on.

…adjusting LIFE around drug regimens, the ebb and flow of cancer-related pain, increased lymphedema due to getting bit by a kindergartner.

…deciding whether to wear boobs or not.

…deciding what it is that is powerful enough to make you go out in public when it’s a bloody production to get ready.

Yet, even though all of this “cancer stuff” happens, still we watch TV, experiment with bread-making, talk and make jokes, play with grandchildren, wonder what it would be like to take ballroom dancing lessons, cook new foods and cook old foods new ways, and eagerly spend time with friends playing cards or going to BINGO halls with free passes.

It was then that I had the stunning insight that living with breast cancer is like living with the weather (except I can’t go to BreastCancerUnderground to get the latest prediction of what to expect today…)

As insidious as it sounds, cancer has become a part of our daily life as much as changing weather.

I am undecided at this moment about whether that’s a GOOD thing (routine is good, flexibility is good – we are currently preparing for an arctic cold snap. We haven’t had one in four or so years…); or if it’s BAD. The bad is that something so horrifying has become as unnoticeable as the weather.

Anyone have a thought?

Image: http://www.washingtonpost.com/rf/image_606w/WashingtonPost/Content/Blogs/capital-weather-gang/201301/images/arctic-front.jpg?uuid=plGgHl5_EeKQoHPINDxtYQ

BREAST CANCER RESEARCH RIGHT NOW! 6: Something To Block Breast Cancer Cells From Growing! Cyclin Dependent Kinase Inhibitors (Now Ain't THAT A Mouthful!)

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.bloomberg.com/news/2013-01-10/pfizer-may-push-5-billion-breast-cancer-hope-for-ruling.html

Yeah, I know, the lead article is from the financial page and talks about how the biggest drug company on the planet is trying to push a breast cancer-treatment drug so it can reap the financial benefits ($5 BILLION a year)...

Some interesting facts however, stopped my eye-rolling. The discovery that certain kinases – which are proteins in the body that move molecules around so that cells get energy to keep splitting and making new cells – was made over a decade ago. Leland H. Hartwell, R. Timothy Hunt, and Paul M. Nurse received the 2001 Nobel Prize in Physiology or Medicine for their complete description of cyclin and cyclin-dependent kinase mechanisms, which are central to the regulation of the cell cycle.

Since then, research into drugs that might inhibit – read “slam on the brakes for” – the progression of cancer cells from doing their normal job to growing without stopping and causing breast cancer, has been fast and furious.

The reason Pfizer wants to skip the usual protocols for drug development is that, besides making them more money than they would know what to do with and making their investors giddy with glee (how much would you like to wager that we’d find this little company in the stock portfolios of our nation’s and state’s legislators (Democrats AND Republicans AND Independents???)); the initial, Phase 2 testing produced almost no adverse reactions and a definite change in the speed at which breast cancer cells were dividing.

These cyclin dependent kinases are inhibited by particular enzymes (enzymes are proteins – which you all know are what meat, nuts and legumes) – hence the name Cyclin Dependent Kinase Inhibitors or CDKIs. So, the CDKIs slow down or stop the transfer of energy to cells. They can be selected to target very, very specific places on cells. This is how they can be used to target breast cancer cells.

So – Pfizer is waiting to hear from the FDA; but likely they will use the fact that the FDA has approved other new treatments for different types of cancer to hurry the approval along.

All that us normal people can do is wait and see.

Resources: http://www.vailworkshop.org/files/2010/LibraryResources/Schwartz%20References/Schwartz%20GK,%20Targeting%20the%20Cell%20Cycle.pdf, http://www.asianscientist.com/health-medicine/prmt6-suppression-linked-to-breast-cancer-2012/, http://en.wikipedia.org/wiki/Cyclin-dependent_kinase, http://en.wikipedia.org/wiki/Cyclin-dependent_kinase_inhibitor_protein
Image: http://upload.wikimedia.org/wikipedia/commons/7/71/PDB_1jsu_EBI.jpg

SEX (after and during breast cancer treatment…)

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…

After my “Brain Cancer” essay, I predict that this will become my most popular post…

It’s one I knew I would get to, but is way too personal so I also knew I’d NEVER get to it.

A movie we watched last night has spurred me on to finally write this.

HOPE SPRINGS (with the word “eternal” just hanging there, unwritten, unspoken but entirely appropriate and implied at every twist and turn in the plot.

Take a three of my favorite actors – Meryl Streep (for multiple movies that we love!); Tommy Lee Jones (for MEN IN BLACK); and Steve Carell (for making us laugh repeatedly…and for NOT doing one single funny thing in this movie!) – and create a story that can easily lead to CONVERSATION.

Which is I have discovered, more important than anything in a marriage.

I once read that the most important sex organ in the a Human body is not…ahem. It’s not…ahem. It's not...ahem. It’s not the skin.

It’s the BRAIN. And the brain, while doing all sorts of things (which HOPE SPRINGS talks about brilliantly) directs intelligent conversation.

It led last night, to all kinds of things, some of which I’ve talked about before: http://breastcancerreaper.blogspot.com/2011/06/i.html, http://breastcancerreaper.blogspot.com/2011/11/big-hairy-deal.html, http://breastcancerreaper.blogspot.com/2011/08/what-would-men-like-better-bigger-boobs.html, and some of which are new, like this Indian-sounding thing I’ve been reading about called “kareeza” (http://www.reuniting.info/) which we will be exploring in the future.

So for all you sickos (8-D) who were hoping for a quick thrill, go rent the movie and then rub that most important sex organ of all…your head!

Image: http://cache.boston.com/bonzai-fba/Third_Party_Photo/2012/08/07/hopesprings__1344369006_8158.jpg

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