Radio Interview

http://coastradio.org/coast-community-radio-coverage-area/programs-podcasts/light-on-health/

Well, it's been almost six months since I wrote here. I am musing about a post in my head but not ready to write yet. For now, a link if you feel like listening. It's about 20 minutes. ❤️❤️

Crap After Crap and a Good Life in Between

This seems to be the nature of living with metastatic disease. We get a little break between scans (sometimes), then we deal with the crap the scans reveal. In between times are good. For me I mostly feel really good. So that’s lucky.  

I had gamma knife surgery yesterday to zap four small lesions in my brain. I won’t know until scans in three months reveal how well it worked, though it is thought to be a very effective treatment. Regardless, for the next three months I can sort of ignore it all, unless actual symptoms reveal a problem. I haven’t even had symptoms yet, of any of the cancer, aside from the original early stage lump and the little lump in my neck that foretold a metastatic recurrence. I like the ignoring part. Nothing about my life will improve if I think about it all the time, so I choose not to. 

So, to the gamma knife. Doctors do NOT like administering whole brain radiation more than once, so I have basically used up that option. Not that I want more, as the cognitive impairments have been becoming more apparent as time goes on. I like my brain! I hate to see it being fucked with, but choices aside from the WBR were basically nil at the time.  Fortunately the lesions found in my MRI were gamma knife-able.  

Basically gamma knife is targeted radiation to only the lesions so as not to damage healthy brain tissue. It involves having a frame

essentially bolted to the head: two screws(?), nails (?) – I don’t know what they were really. The worst part by far was the ginormous syringes full of Novacaine they shot in at each site before they made holes in my head. There were two sites on my forehead and two more on the lower back of my head. Through most of the last three years I have sucked it up and taken what has been thrown at me. Those motherfucking shots hurt so damn much I blubbered and cried behind the frame.  Even with the pre-meds of Ativan and Oxycodone, even with the numbing cream, even with my pretty high pain tolerance.

This all occurred after yet another MRI, this one having images (slices) every millimeter rather than the norm of every five millimeters.  Here’s where they found the pesky fourth lesion to zap, a nice bonus of one that won’t have grown for three months while I wait for more scans.

Then… Believe it or not, I sat in a room with my head bolted to a frame while the radiation oncologist, the neurosurgeon, and the medical physicist planned the treatment based on the fresh MRI. Turned out there was a complicated case before me so the wait was who-knows-how-long.  I was wearing scrub pants that must have been a size XXXXL and a gown tied in the back which of course kept untying, as they always do.

At left is the space helmet-y thing they put on me so the medical physicist could somehow measure whatever it was he needed to measure. Each lesion took about 20 minutes to zap so about an hour and twenty for the procedure in a fairly uncomfortable position. I didn’t really feel anything, which goes for radiation procedures while they’re happening. I was then wheeled back to whatever room my head got poked to take the frame off. And that was that. Jon and I left and drove the two hours home. After sleeping until noon today, I felt pretty normal, practiced yoga, tested my balance during said practice and it was pretty ok. 

So… None of this seems very pink to me. My friends with MBC and I tolerate gazillions of procedures that seem like science fiction to

prolong our lives.  I and many of these women blog, post pictures, tweet, yell at politicians (Rand Paul sucks by the way) and former Komen CEO Nancy Brinker, because we all know we have been mostly forsaken in the breast cancer conversation of the last few decades.  With the founding of METUP and the Metastatic Breast Cancer Project things just may be looking up for us. Hopefully Joe Biden adds to the positives by allocating and reallocating big dollars for mets research.  After all, it is the metastatic cancer that actually kills. No one ever died from a tumor in her/his breast.  

I am SO looking forward to attending my second Living Beyond Breast Cancer Conference for Metastatic Breast Cancer Patients in April. I long to spend in-person time with the friends I made there last year, who have continued to be my online sisters in the interim. I don’t know what I would do without them. To be able to say whatever you want about this shit to people who understand completely and deeply is precious. To have and to give empathy as opposed to sympathy is also precious. And to be able to make jokes about all this is also precious. 

So we will continue to live our precious lives and make the most of the time doing what we love, cultivating our favorite relationships, and of course watching the Pats win the Superbowl.  Though if I’m realistic it’s going to go the Panthers way.

And just for kicks, Louie thinking he's waiting for dinner. More kicks: fresh tattoo! It is the second half a Lucille Clifton poem, Blessing the Boats.

may you open your eyes to water

water waving forever

and may you in your innocence

sail through this to that

Another chapter of Lucky/Unlucky

I haven’t written on this blog in such a long time.  I’m not sure why that is. The only thing I can think of is that I am in a neutral, sort of no-man’s-land with regard to the cancer.  I am in between scans and just riding the wave of feeling relatively ok.

So, just for fun I thought I would give you an idea about side effects and late effects. Everything right now is from treatment, not from the cancer itself. Some are late effects of surgery and radiation, more poison-slash-burn effects.

Here are the things that are going on:

Blurred vision: due to Xeloda/capecitabene.

Cracked fingers: again, Xeloda/capecitabine.

Extremely dry mouth and lip sores: not sure whether Xeloda, Tykerb, or something else.

Dizziness: Xeloda/capecitabene

Fatigue: sometimes even cancer patients finished with treatment experience a lifelong increase in fatigue.

Intermittent nausea/vomiting: Xeloda and Tykerb? One or the other? Who knows?

Intermittent diarrhea: Tykerb? I think.

Really spacey and forgetful: Whole brain radiation and on my third round of chemo, which has no end point. Chemo and brain radiation are known to cause cognitive issues.

Still working on range of motion in my right arm: mastectomy and axillary lymph dissection.

Intermittent pain in right chest and armpit: radiation induced rib fractures. Scans still show “five poorly healed rib fractures.” Or maybe Post-mastectomy Pain Syndrome (around 60% of mastectomy patients get this).

Here are the things that make me feel very lucky and happy:

I feel relatively GOOD! I practice yoga every day. I swim or walk as well. I am a yogavangelist and back to being a swimvangelist! There is nothing better in the way of tolerating all of the above and keeping a clear and calm mind. There are WAY worse scenarios than described above. Mine are all dealable (is that a word?).  I had whole brain radiation and experienced no brain swelling, no need for steroids, no complications of any kind except the obvious (see Really spacey and forgetful).  

I have generally been a very good at tolerating treatment. I’m well aware that this is due to random chance. Everyone I know has a different experience with these things. Some have awful side effects to the point of having to go off a treatment, some have minimal side effects, and some have something in between. No one knows why, really. During my first mets treatment, I ate mostly vegan, no sugar, gallons of green tea, blah blah blah. Lo and behold, brain tumors. Now I eat whatever seems appetizing and am doing pretty well. There is really no way to avoid whatever is coming your way with treatment. This is my opinion but I can back it up with an infinite amount of anecdotal evidence. There is also in the research field no data on why some people tolerate or respond to a treatment and some don’t.

I am so fortunate to have my family. I love seeing my kids grow into adults and I know how fortunate that is. I will ride this wave for hopefully some years to come. The thing is, things can go south in an instant and that’s always in the back of my mind (yoga really helps with calming the what-ifs and whens).  My husband is a rock and my main caregiver. He takes this role seriously! And, he is a very high-energy person, which helps when I am low energy. I am also so fortunate to have a solid, wonderful core group of friends. I don’t have to pretend anything. They are there when we need support, whether that’s rides to Portland, food, company, being soccer fans together, or laughs.

I have good health insurance. In my situation this is very, very, very good. Treatment costs a LOT.  I know many women who struggle in this realm. Insurance companies can be extremely uncooperative and extremely unsympathetic, only concerned about the bottom line. Some of the bigger insurance companies (like Blue Cross) have taken away patients’ PPO options and many of the large cancer centers (MD Anderson, Memorial Sloan Kettering, to name a couple) do not accept HMOs, which are Blue Cross’s patients only option at this point. Evil. I do not take for granted that my small, regional insurer is not going this way. Yet, I suppose.

All this is to say that though I consider myself pretty fucking unlucky to have this shitty, craptastic disease, I know that how it has gone thus far makes me a pretty lucky person as well.

Video Slog Through Talk

https://youtu.be/qRUspRmkoY8

https://youtu.be/OSzlZdz9KR4

Scans Good and More Stuff

Hey all,

Haven't posted in ages I know. In case you didn't know yet those scans were all good. My regimen seems to be working. So that's way cool.

Here is the text of the talk I gave the other night.  It's long (a 45 minute talk) so I don't blame you if you don't feel like slogging through.  I will also figure out video of talk to link here.  

Our die-in is Tuesday and Monday I will speak at a CMH awareness event at the Astoria Column, where they will, yes, light the column pink for the rest of the month.  Yup.  

So here is the talk. It's called MYTHBUSTERS: Real Breast Cancer Awareness

Myth Busters

My name is Laura and I am a cancer patient.  This is actually my full time job now.  As such, I’ve thrown myself and all my free time to education (of myself and others) and advocacy. I can’t really work as I never know what is going to surprise me next about this disease. This won’t be the happiest talk, but I hope it’s an empowering one. Knowledge is power, and the more we know the more we can make choices about what causes we choose to support, how we talk about the behemoth that has become Pinktober, and what we can do about it. My hope is to change the breast cancer awareness paradigm throughout our community to one of accurate information and support of causes that actually help. As my friend Beth so simply put it: “If all you want to do is to say ‘Hey you, there is a thing and it is called breast cancer’ then yes, awareness is the right tool.”

A caveat: I’m not here to say that mammograms or early detection are bad or not worth doing. Of course I think all women should have mammograms! Of course I agree that cancer should be detected so it can be treated as soon as possible! I am here to point out that for at least 30% of us it is much more complicated than mammogram-detect-treat-cure.

In the meantime, those of us with metastases have cancer treatments for the remainder of our lives.  Some aspects of treatment have improved. There are better anti-nausea medications and more targeted therapies.  Radiation treatment is more technologically advanced and can avoid doing such severe damage to surrounding areas. Data tells surgeons now that cutting more is not necessarily better.  That said, the basic treatment has remained the same for decades.  Some call it poison/slash/burn. Chemo/surgery/radiation. Chemotherapy can damage your heart, nerve endings, cognitive function, to name just the tip of the iceberg. Mastectomies and breast reconstruction are not, as some of the cult of positive thinking insist, an opportunity for a nice boob job. Even our less invasive surgeries leave lasting effects on mobility, chronic pain, damage to nerves, and lymphedema. Radiation is Forever.  It seems like the “easiest” piece, but its lasting effects are some of the hardest.  So we’ve advanced, but in decades the advances can seem relatively small when compared with advances in say, technology or communiations in the same half century or so. Treatment still comes with brutal ongoing side effects and late effects, and the risk of toxicity and irreparable damage. 

Here are some breast cancer awareness campaigns I’ve seen recently on social media.

In 1982 Susan G. Komen died of metastatic breast cancer.  Her sister Nancy Brinker founded Susan G. Komen for the Cure.  Komen succeeded in bringing awareness of the scourge of breast cancer to everyone, which had previously been taboo.  But the organization has failed to change with the times, and with the facts.  The cause has been commercialized and sexualized and made into silly “awareness” games.  We are all aware by now, and need a cure.  Actually, it is not about the “ta tas” or breasts, it is about our lives, and saving them. I don’t know anyone who would rather keep their breasts than keep their lives.  And finally this from an adult entertainment company in CA. No words.

An article in Psychology Today about Amy Robach’s misinformed information about breast cancer, author Gayle Sulik said “the plain truths about breast cancer—namely biology and large bodies of evidence—keep getting lost. Sadly, in their place, mythology and wishful thinking.”

There are too many breast cancer myths to debunk these days, partly because of the sexualization and commercialization of the breast cancer cause. And partly because of the steamroller of misconceptions of this disease as an “easy” or “curable” cancer that gets a lot of attention.  As medical sociologist Gayle Sulik noted, “by the 2000’s commoditization of breast cancer shot past advocacy in terms of time, attention, and resources.  Pink ribbon visibility started to replace deeper understanding of the complexities of the disease.”  I’ve chosen some of the more pervasive myths to address for you tonight.  I have slides with sources of information at the end, but please talk to me afterwards if you want more specifics, and I’d be happy to correspond with you via email with explanations and sources of the data I’ll share. They are mostly secondary sources from legitimate organizations, as sometimes getting into medical web sites is tough.

1. Early detection = cure

Just two weeks ago Terry Gross interviewed a prominent breast surgeon. She insisted that mammography is the best tool. However, according to medical sociologist Gayle Sulik, there was no significant discussion of data or evidence to support the surgeon’s views and many of them could be called into question, but she was struck most by the mammogram conversation. In fact, eight randomized, controlled trials of mammography screening have found that the benefits are far smaller than early evidence suggested, and the hazards have been largely ignored. Up to 30% of people diagnosed with breast cancer stages 0-3 will have a metastatic recurrence. It seems to be pretty random who metastasizes.  An informal poll of my very large online support group gave me these 385 responses. These are all mets patients. Initial diagnoses were 15 at stage 0, 47 at stage 1, 108 at stage 2, 62 at stage 3, and 153 at stage 4. Many of the stage 4s are younger women, who have dense breast tissue, who are not candidates for screening, who may not have been taken seriously about symptoms at such young ages. Active disease may stay at bay for years, months, weeks, or not at all.  Breast cancer is not one disease.  There are subtypes, and within those subtypes each individual’s response to the disease and its treatment.  If you have a certain subtype of breast cancer and are treated with the standard of care for that subtype you may have a complete response (this is good), a partial response, or your cancer may not respond to the available treatment.  No one knows why some people respond well to treatment and others don’t.  This is one of my biggest frustrations. My oncologist is fond of saying that my response to treatment will depend on the biology of my individual cancer.  There is no catch-all. Some subtypes have biological markers like hormone positivity or an overexpression of the HER2 protein, or both, for which there are targeted therapies.  Some breast cancer is called triple negative and has no targeted therapies at this time. Chemotherapy is the only option and that means if it metastasizes, a triple negative cancer patient will be on chemo for the rest of her or his life.  She may die of cancer, but she may also die of complications from treatment. 

2. Breast cancer is more survivable than ever.

Survival rates are increasing, it’s true. However, diagnoses are also increasing in young women as well as the older population.  The number of deaths has been over 40,000 per year in the U.S. and about half a million worldwide, unchanged, for at least twenty to thirty years.  The same number of people are dying each year, to the tune of 1430 per day worldwide and 110 per day in the U.S.

3. Early detection is always possible with regular mammograms

Early detection works well for slow growing cancers and those easily seen on mammograms. There are actually different kinds of breast cancers that manifest differently in the body. Ductal cancers and lobular cancers are named by the way they look under a microscope. Ductal cancers account for 80% of breast cancers and tend to grow together in a mass, making them somewhat easier to find, though if the breast tissue is dense it is more difficult. Lobular cancers, 10% of breast cancer diagnoses, tend to grow in more than one area of the breast in a pattern like a sheet, making them more difficult to find. Lobular breast cancer is sneaky and difficult to detect in its earlier stages.  In some rarer types of breast cancer, the cancer cells may not form a tumor at all. For instance, inflammatory breast cancer is extremely aggressive and first detectable on the skin, making it at least stage IIIb and often stage 4 at initial diagnosis.  All this to say, breast cancer advocacy for screening is WAY more complex than encouraging mammograms for early detection.  

4.  Late stage diagnoses = neglect by the patient to spot early indications of disease or be screened in a timely fashion.

A woman in my support group was diagnosed stage IV at age 34.  Her symptoms were feeling tired and unusually bloated after eating.  Turned out she has lobular breast cancer in her ovaries, uterus, abdomen, and the top of her vagina.  One can have little or no activity in the breast and cancer in the lymph nodes, just as one can have a larger tumor in the breast and no lymph node involvement. Additionally, aggressive breast cancers may grow in between regular screenings, with no symptoms, lumps, or other indications that something is wrong. There is no formula, so my goal for you tonight, this month, and all year as a matter of fact, is to change what we think of as “awareness.” There is no cure until metastasis is cured or prevented. The way to end breast cancer is by giving to metastatic breast cancer research, and research in search of more genetic mutations and the targeted therapies to treat them.  The way to end breast cancer is by demanding more federal funding be given to research into metastases.  In July the House passed a bill to increase funding for breast cancer research. Current estimates are that 7% of cancer research dollars actually fund all metastatic cancer research.  2.5% goes to metastatic breast cancer, which is more than any other metastatic cancer.  But really, what this tells us is all of us metastatic patients are thought to be beyond the point of help in prolonging life, developing less brutal treatments, and unlocking the mystery of why metastasis happens and thereby being able to ACTUALLY prevent or to stop it. 

5. Young women do not get breast cancer

Regular mammograms are now indicated for women starting at age 50.  While breast cancer is still statistically rare in women under 40, the number is growing and this population is more likely to be initially diagnosed with stage IV, partly due to the difficulty of having symptoms taken seriously at a young age, and partly due to young women being diagnosed with more aggressive cancers.  Addtionally, younger women’s breasts are more dense, meaning mammography is limited as to what can be seen.  My involuntary foray into this world has introduced me to countless young, vibrant women with stage 4 breast cancer in their 40s, many in their 30s, and even 20s.

6. Annual mammograms protect women from dying of breast cancer

Yes. Annual mammograms can detect cancer.  But a patient can do everything right and still die of breast cancer.  20% of breast cancers are difficult to detect via mammogram and are much more likely to be diagnosed at an advanced stage.  A patient can be diagnosed with early stage breast cancer and his or her cancer can metastasize.  NO ONE KNOWS WHY.  Yet.  A metastatic breast cancer researcher at Fred Hutchinson Cancer Research Center in Seattle, has received a $4.1 million Department of Defense Breast Cancer Research Program to study how microenvironments within distant tissues influence dormancy, drug resistance and the re-emergence of disseminated tumor cells. He will use the funds to research ways to prevent breast cancer metastasis by treating dormant disseminated tumor cells.  This research will directly address cause. Not the cause of breast cancer, but the cause of metastasis. This is what we need. Now. Not more awareness. 

7. Buying pink products and race registrations help the cause of ending breast cancer

There is little data on where the money goes from all of the pink items and events purchased. Like a lot of our economy it’s kind of about stuff that people will buy and making a buck. And there are a lot of “breast cancer charities” on charity watchlists as BAD. They are NOT equal in intent, mission, or integrity. As you can infer from some of the statistics cited, much of this money is not going to “the cure.”  I recommend that if you cannot resist registering for a race for the cure, or buying a pink key chain at a hospital gift shop, that you ask what charity this supports and how much money from your purchase might be going to research for a cure. Susan G. Komen’s new CEO has dedicated 50% of research funds to mets.  However, the organizations administrative costs are huge, followed by awareness and education, and then research. Nancy Brinker’s salary in 2012 was 684,000 dollars. Don’t get me wrong.  I support organizations that provide services and supports to breast cancer patients.  Living Beyond Breast Cancer is an amazing organization that provides information and education (legitimate), support (help lines and conferences where people can connect), and advocacy for various specific populations like young women and metastatic patients.  What they don’t do is market themselves as “for the cure.” It is not in their mission to raise funds for scientific research.  I have had much support from this group.  Komen on the other hand, is not an organization dedicated to finding a cure.  They do provide some great services as well. Travel grants to conferences.  Gas cards for traveling long distance for treatment. I’ve been the beneficiary of these. But we all need to pick our charities based on what we support doing and what the organization is actually doing.  Metavivor is entirely volunteer-run and every dollar raised goes to metastatic breast cancer research grants.  Clean and simple.

8. That there is such thing as breast cancer “prevention”

We can and should do everything we can to stay healthy.  We should eat well, with minimal processed foods and lots of fresh vegetables.  We should exercise.  I considered myself a pretty darn healthy person both before and after my initial diagnosis in 2012.  My diet, while not perfect, was and remains pretty darn good.  I eat from our garden. We make our food from scratch.  Prior to my diagnosis I was a triathlete. I’ve run a marathon, half marathons, swam obsessively.  In other words, I partook in what we can do to prevent disease in our bodies.  And here I stand, before you.

9. That breast cancer is one disease.

I can’t say it better than Gayle Sulik so I’m going to tell you what she said.

The greatest myth serving the early detection belief system is that breast cancer is a single, homogeneous disease that always behaves in the same way, progressing from early to late to lethal (stage 0, 1, 2, 3, 4). From this linear perspective, catching breast cancer "early" suggests that the cancer can be nipped in the bud, stopped in its tracks, prevented from progressing to a lethal stage. A cancer stage, however, is not a point in a definite progression. Staging provides a snapshot of some of a cancer's characteristics (such as size, extent, and how much the cells differ from normal cells) at a single point in time.

It is an important piece, but not the only piece, of a complicated puzzle.

The linear progression model does not take into account the complex biology of breast cancer. Researchers have identified at least ten different breast cancer types with unique characteristics, and they don't always behave the same way.

Rather than telling the public about the complexity of breast cancer biology, differences in treatment outcomes based on that biology, and the risks, benefits, and limitations of screening technologies, the public keeps hearing the drum beat of early detection, saved lives, and how a breast cancer diagnosis brings out the best in people. Amy Robach's (of Good Morning America) story is no different. She wants to believe that a mammogram saved her life. Let's say for the sake of argument that Amy Robach turns out to be right. She is treated for breast cancer and lives out a normal life expectancy for a white woman of her age, an average of about 80 years

If this is the case, then we could indeed call Ms. Robach lucky. Not lucky that her producer persuaded her to have that on-air mammogram in 2013. But that she happened to have one of those types of breast cancer with the particular biology that responded to treatment. Many women and men are not so lucky.

As esteemed metastasis researcher Dan Welch, PhD, emphasized:  "To prevent something, you have to know its cause. We have no idea why cancer cells spread, let alone what prompts them to disseminate throughout the body."

There can be no prevention of or cure for breast cancer until we know its cause. We cannot know its cause until we know why the up to 30% of patients whose cancer metastatizes does so, be it initially, months, years, or decades after it is diagnosed.  We cannot learn this without direct and substantial funds, both public and private, dedicated to research on metastasis.  And we cannot expect this funding to happen until we force the conversation about breast cancer to change, one October, one person, one community, one government at a time.

The moral of the story is that we need research funding. Here are four organizations that fund metastatic breast cancer research and I would love you to give your October donations to them instead of buying a pink ribbon key chain, but in the great scheme of things it is not the bulk of what is needed. What is needed is federal scientific research funds and so I plead with you to contact our legislators at the federal level – Wyden, Merkely, and Bonamici – and tell them this is what is needed to treat and even to cure breast cancer, not more awareness campaigns.  You can help by doing this now, as a new organization called METUP is dying in in Washington, DC on the 13^th, as we will be dying in here at Astoria High School on the same day. AIDS activists changed the conversation in the 1980s, when 40,000 people a year in the U.S. were dying. Sound familiar? Well, now due to ACTUP’s radical actions, AIDS, with the right treatment regimen, can be a chronic, liveable disease. If not a cure in my sure to be shortened lifetime, that is what I want, and what all of us want.  Speaking of the Astoria Die In it will take place at Astoria High School on October 13^th at 5:00. It is the senior project of Libby DiBartolomeo. Come and support her effort to change the conversation around metastatic breast cancer.

We are on the cusp of great change in cancer treatment.  Vaccines, immunotherapy, individualized treatment based on one’s genetic mutations. Researchers are beginning to realize that genetic mutations cross cancer types. For instance, patients with colon cancer, breast cancer, and melanoma might share genetic mutations for which targeted treatments could cross cancer types. These studies, termed basket studies, are at the beginning stages. Fred Hutchinson researchers are looking at what makes dormant cancer cells on organs activate, and how to deactivate or kill them. If they succeed we might just have a cure. What is needed? Increased scientific research funding at the federal level.  (chorus)  We also need treatments that are less toxic and allow us, while we live, to live as normally and healthfully as we can.  I know a lot of metastatic breast cancer patients. They are moms, some dads, a 37 year old civil rights attorney and mom, a 40-something medical physicist, a cancer care social worker, a 34 year old AIDS social worker, nurses, doctors, former booksellers, daughters, spouses, friends, active community members.  Let’s change the conversation. Now would be the perfect time.

Living Beyond Breast Cancer #beyondthebreast Campaign

It's been so long since I've posted.  I really am still alive!  Life changed when the boys went back to school.  My days, if it weren't for cancer and scanxiety for next week, are peaceful and content.  Basically, I go to yoga in the morning or practice on my own, I walk (or run!) the dogs. I clean up a little, cook some, and I work on my October projects.

Sometimes I take a break (a break from the break that's my life!) to sit on the deck and look past the rosemary to the sunflowers and beyond to the river. It is a pretty fine place to sit and do nothing.

Part of not writing here is that I've written for Living Beyond Breast Cancer - Living Beyond Breast Cancer Guest Blog by yours truly! - for the Daily Astorian (an editorial that will be published just before the start of October, and for a talk I am giving on the 8th of October about guess what?  I will load all these onto the blog after the fact for those not here.

Also, Libby and I (mostly Libby) are in full force getting ready for the October 13th Astoria Die-in for Metastatic Breast Cancer - Astoria Die-in on October 13th.  Libby is a high school senior at Astoria and has taken on the die-in as her senior project. If you're local and reading this COME, either to lie down and "die" or to support this project. Support Libby's efforts in any way you can. Make a donation that is useful (unlink) to Metavivor or the Metastatic Breast Cancer Network, who actually fund research on metastases.

So that's where I'm at. Scans of body and brain next week and doctor appointments with results on Thursday.  It's an Ativan-for-sleeping week.

My Medical Moments

I’m not here to talk about the stuff well-meaning lay people say to us cancer patients. No one knows what to say.  We’re all doing the best we can.  However, I’ve been keeping a chronology of my “medical moments,” as I like to call them, and no time like today to publish them.  Medical staff people from receptionists to the oncologists in charge of my care speak with me frequently.  They have to! But, we’re all imperfect and there are some things that just don’t need to be said to cancer patients.

A caveat:  I am getting amazing care. Shout out to my medical oncologist Dr. Robert Raish, OHSU Knight Cancer Institute.  Gotta stay on that guy’s good side… 

Another caveat: These moments, when gathered in a tidy package, seem to imply that I have extreme bad luck with stuff like this happening. Or that I have not gotten excellent care.  Neither of these is true.  My stories are NOT uncommon.  And I chose and continue to choose very well for my care.  People are rushed, and it is hard to have these types of conversations.  We are all humans, and we just don’t say the right thing sometimes.

August 2012:  at my annual exam with my CFNP I showed her a large mass in my breast.  It moved around, I’d had plenty of benign fibroids in my breast before.  The brochures tell you not to worry if you can move it around.  Cancer attaches itself!  I was getting a mammogram anyway, and she told me it did so not feel like cancer.  Takeaway: Please, please do not act certain about things you can’t be certain of until imaging and biopsy.

September 2012:  I love my surgical oncologist.  She is an amazing woman, and I know that keeping me positive was important standard of care, if you will, for the crap I was about to go through.  She told me, this is a bump in the road, a crappy year and you are going to get through it and move on.  Except that a year and a half later I felt a lump in my neck and was diagnosed with metastatic recurrence to my lungs, liver, and many lymph nodes.

Jan 2013:  The plastic surgeon…  Sold me on the straight to implant reconstruction as it was the only way I was having reconstruction.  For me, I was not about to do multiple procedures with tissue expanders, bla bla bla, and often be unable to swim or run.  I was sold on the convenience of it, truth be told.  I would not need a bra (I HATE bras), and as a person who wore a swim suit almost every day I thought it would just be mentally easier to have a little something in that section of my suit.  What he failed to tell me, was that implants can be extremely uncomfortable. That they actually feel like the worst, most too tight bra you’ve ever worn, only 24-7.  To this day, three years out from surgery, I can’t stand the things.  It would have been good to have more information.  What’s that you say?  There’s so much information out there for the finding?  In that year on that bumpy road, I was not alone in having a crap ton of really difficult decisions to make, while being dazed, confused, scared I was going to drop dead on my husband and kids, and feeling putrid 99% of the time to boot.  And those cancer decisions?  They are ALWAYS between things that are both Extremely unappealing.  Give us the real information, please.

April 2013:  The radiation oncologist informs me on what I was told and thought would be my second to last day (the 27^th day in a row) of radiation treatments an hour from my home, that actually he had planned five more targeted sessions.  He forgot to tell me!

            This is the thing about being a cancer patient, people.  EVERY interaction we have is frought with anxiety and second guessing about its true meaning.  So this little gem of a moment, at what was to be the end of my craptastic year and then done of being a cancer patient, sent me into a tailspin of doubt, of suspicion that my situation was worse than anyone was telling me, etc.  By the way, I am a well-read, fancy liberal arts education human.  I know how to process information, to ask questions, to assert myself when necessary.  Many, many of my compadres in cancer don’t have my arrogance, or confidence, or whatever.  Even so, cancer levels us all into puddles of fear a lot of the time.  Add to that cognitive difficulties as a result of chemotherapy (multiple regimens in my case) or say, whole brain radiation (had that too), and it is a gloppy stew needing constant adjustments to the burner temp, the seasoning, the balance of ingredients.  Poor communication like the above only feed the fear beast.  I know that’s not your intention in your commitment to caring for people.

Also, I had my overdue annual exam around this time.  I have been seeing my PCP for probably fifteen years or so.  And her assistant, an LPN, has been with her for her entire career in the area.  So, they know me.  We did the usual exam, nothing special about it.  As I prepared to get dressed, the LPN told me to hang on a sec, she would go and schedule my mammogram and be right back.  Huh?  I tried to be calm as I said, “that really won’t be necessary, as I have no breasts.”  Gosh, maybe just looking over my chart, even the last couple of entries, would have told you that.  I’m not a super sensitive person who’s easily made to cry.  If I were, and many people are with plenty of good reason, I would have right then.  Let’s be real, losing your breasts is not an opportunity for a boob job.  It is not a small thing, though breasts are not major life sustaining organs.  It actually really sucks, for a lot of reasons, but I digress. 

May 2014:  As I said earlier, I felt a lump in my neck out of the blue one night, called Dr. Raish’s office blubbering, and was asked when I could get there.  I said two hours and got in the car (yes, I live two hours from my beloved oncologist).  We set up an ultrasound guided biopsy and I set about asking Dr. Google what else it could be.  I was giddy with my own intelligence at that point – it was either an infected implant (praise be, I would have to have them out!), or an obscure autoimmune condition I found that seemed to fit the bill.  Smugly, I went to my follow up for the biopsy results only to be…. Er…. Wrong.  After scanning the other remaining pieces of my body, it was found all over the place. 

Fall of 2014:  This season was chock full of medical moments with insurance authorizers, schedulers, and the like.  The upshot is that if you are one of the above, please know that “scanxiety” is real.  It is not just a cute tag line that we live scan to scan.  We do. So please, please, take the long road, do the harder, more complicated finagling of authorization gymnastics and scan scheduling.  The easy, efficient way probably does not serve the patient best.  Communicate with the different facilities involved, and if your giant medical facility has the front desk people and the techs in the back on different EHRs, fix that right now.

Spring 2015:  I was just settling in to my life as it was.  The targeted HER2 treatment Perjeta had had amazing results when paired with Herceptin, only it wasn’t available yet for neoadjuvant use when I had my initial diagnosis.  Now, I had been NED (no evidence of disease), or as I like to say, NRED (no radiologic evidence of disease), since October, and the two infusions every three weeks, while tough on my insurance who was paying for them, were not too tough to live with.  I started feeling a tiny bit off when doing flip turns at the pool.  That’s all.  And my eyes felt bleary from what I assumed was my two day per week job in front of a computer where, with my reading glasses on I had to be very close to the screen and with them off wheel practically out of the cubicle.  In my former life I would have chalked it up to tired or hungry.  In my occupation as cancer patient, I knew to request a brain MRI. 

Yup, you guessed it.  Brain tumors! 18 of them! Too poorly differentiated for gamma knife!  Whole brain radiation it is!

I like the radiation oncologist to whom Dr. Raish referred me.  He is smart, capable, has trained under bladebla who spoke on breast cancer brain mets at this summer’s ASCO meeting, and so on.  We made a plan, it didn’t seem a second opinion was going to net me any different options, and I was able to lie down for the mapping and planning stuff the same day.  I asked him when I would lose my hair.  I’ve lost it twice before on treatment.  I just wanted to know.  Planning and knowing is not the worst or most trivial thing to want. He replied that that was the “least of” my “worries.”  Hey mister, it’s not for you to say what I should worry about and how deeply.  I am not a complete idiot. I know it’s incidental.  Give me the dignity of just answering my questions.

Now, the apex, the pinnacle, the climax of medical moments, if you will.  The medical moment that caused me to start generating my short list of such moments. This one was posted as its own tirade after getting home from the appointment. But it belongs here, so feel free to skip!

June 2015:  Thursday is “doctor day” at the two radiation centers I have gone to – more baby-fying, infantilizing terminology if you ask me, but that’s another entire talk.  Children do get cancer, I am not happy to say, but all people with cancer do not suddenly become children, or childlike.

My doctor was gone so another doctor in the practice saw me.  My doctor and I talked last week about next plans and all the detritus to come so I wouldn’t be left hanging with him not there.  So.  The other rads onc came into the room.  I had one question and only one, concerning a drug side effect – nausea.  As is the case these days, doctors, nurses, medical assistants, and receptionists spend a lot of human interaction time looking stuff up on the computer and charting as they go.  I get it.  It is what it is.  I like EMRs, and have no desire to return to paper charts.

This doctor proceeds to tell me that my nausea could easily be caused by the metastases in my liver. 

Me:  Dr. Raish did not mention any metastases in my liver.  (Me, feeling like no way did Dr. Raish sugar coat my situation for me. And if he did – betrayer!  But, he wouldn’t!)

Her: It says here in your May scan report that there are multiple hepatic lesions, suspicious for metastases.

Me:  Could I see that? I have not received a copy of that report yet. (Cue – stand up and read the screen over her shoulder.)

Me:  Um.  The date of this scan is May of 2014.

Her: Yes, nausea can be caused by metastases in the liver. 

Me, in a thought balloon: WHAT THE BLANKING BLANK?  Did you not just hear me?  You are reading the report from my diagnosis of recurrence a blanking year ago!  My records should certainly reflect that I have been NED, at least from the blanking neck down, since last October.  BLANK! 

Me:  My understanding is that I do not have radiologic evidence of liver mets at this time.

Me, in a thought balloon: Jon, let’s get the blank out of here.

Her: So you will probably lose your hair very soon.  Have you noticed hair on your pillow?

Me: No. And I have gone bald two other times from cancer treatment so this is not an issue I really need to discuss.

Her: Do you have any other questions for me today?

Me: No.  We’ll just get on the road and head home.

Me, in my precious thought balloon: Like I said, let’s get the blanking blank out of here.

This is me, the gnarled cancer veteran.  A couple of years ago I would have burst into tears and believed her.  And stressing out my nice, nice husband, that is pretty unforgiveable.

The reason I’m telling you all of this is not to complain.  I do a lot of yoga, I feel centered and calm a lot of the time (given my circumstances), and I can see just how difficult it is to work in health care in the 21^st century.  Time and familiarity are now luxuries.

If you work in health care, I’m telling you this in the hope that you will stop, breathe, and consider how your interaction might be interpreted by a cancer patient.  I do not want to silence you, or make you afraid you may not ever say anything right.  We all need to slow down a little, review a chart before walking into an examination room containing a stranger or someone you think you know well.  We are all humans, and there is nothing easy about interacting with each other.  Say that.  Do you have any idea what a relief it would be to hear an “I’m so sorry, this has to suck really badly.  We’re going to make the best decisions we can make together from the best data and your personal preferences to give you the best life you can have.”

If you are a patient, of any kind, A. keep it together and get to the root of what you want to know.  Or, B. burst into tears if someone has scared you or been insensitive.  Both are appropriate responses to stress.  If you choose B., make sure to go back to A. Persist.  Pick your battles.  The tirade I emailed to my medical oncology office netted vastly improved service regarding authorizations, updating me on delays, and scheduling procedures and scans.  I can’t say as I’ll complain about the stand-in radiation oncologist, as I will have absolutely no ongoing relationship with her.  The reason to bring it up though, which tempts me always, is to change something that is being done badly, for all of us.  I am hoping that my medical oncology office is giving better service in this area to everyone, not just “the lady who won’t stop calling all the time.”  Seriously, someone there actually once said to me, “well, if you would stop calling so much….”  As Amy Poehler and Seth Meyer like to say, REALLY?