“To Do”: Maintain Cancer [Denial] Prevention

Time flies when you’re cancer-free! Or at least when you presume you are anyway. Pushing myself to think about my canc-history, schedule overdue testing, live preventatively, and sit down to write a blog entry has proven difficult to say the least. But here I am and there you are—reading this, thank you—so allow me to update you while plunging myself into a perhaps much needed reminder of my canc-history.

On the living-life front, I’ve been as busy as ever. With long locks of flowing hair (well, not really long but relative to the stubble I had last year at this time), I’m still fighting the good fight for animals everywhere. While the usual ups and downs of life continue, I now see things through the cancer lens. Meaning, I bounce back and forth between wanting to sink into “normal” living, and not thinking about cancer; and getting the most out of life like the women in new anti- arthritis/erectile dysfunction/depression/insomnia -drug commercials. Most days it’s just normal living but I often am reminded of how not so long ago I desperately longed for even the frustrations that come from daily good-citizenship.

On the medical front, my breast has taken a break from the relationship. I’m not embarrassed (but perhaps should be) to admit that I haven’t made the effort to have the suggested April/May MRI done.  Yeah, yeah, I know. But that’s kind of the smartest way to reaching my one-year-later-cancer-free milestone, don’t you think? Fine, if you don’t agree with my approach, you’ll be glad to know I’ve finally added it to my ‘to-do’ list.

I didn't say it was on the top of my list.

Just to be clear, I had wanted to schedule the damn test back in May. However, I badly want to avoid an office visit with the communication-deficient oncologist so I tried to have my primary care doctor order it. She wasn’t having it, adamantly proclaiming that an oncologist needs to order the test and review results with me, ignoring my point that I don’t currently have cancer, therefore I’m not in need of an oncologist. Much to my chagrin, I lost this debate and have been MRI-sulking ever since.

But more than just not getting what I want from a doctor (I think we’ve all experienced that), for me, it’s been hard to keep up with the post-cancer burden of medical tests and mindful living for two reasons. First, after living (barely) solely as a cancer patient—devoid of meaningful work, neglecting my role in friendships, and existing as a humorless blob—it’s so hard to even want to step back into those offices, you guys. It’s like I’m a college student, free from the stringent rules of my fascist parents who’s now out on the town with friends, topless and drunk. Kind of.

Secondly, I may have a tad of fear inside that if I give in to the tests, my clean(ish) streak will be over. No one wants to be given bad news, right? So if I just don’t go to the place that they give out the results of doom, I can pretend I’m cancer free. Let’s not forget the battle-of-the-wills from the professional pushers that comes with the ominous news. My blood pressure goes up just thinking about it.

What changed my mind from stubborn avoidance to prioritizing on my ‘to-do’ list, you ask? A recent, nice, long talk with my bestie during a weekend in DC for an HSUS conference. I so rarely talk about the cancer stuff these days but she prompted me and made some very compelling (and pushy) arguments. Okay, I’ll do it….promise.

So my feet-dragging is the result of a bit of denial mixed with stubbornness and topped with more denial. But—I’m going, I’m going. And before you get frustrated with me, sending me, “it’s only a test—get it done!” and “you’ll feel better if you just have the MRI!” comments, please know that what I’ve shared here are my real thoughts. I’m being open and honest with my feelings here, which you can’t change and you may not understand. But they’re true for me.

Besides—perhaps there’s nothing to fear and the tiny cancer cells within are respectfully maintaining their microscopic size and are adopting a friendly pledge to coexist without killing me. Kind of makes them sound adorable, doesn’t it? 

Stepping Out of the Woods

It's been weeks since my last post and for those following more closely, I’m sorry. It’s a classic case of life taking over. Mostly in a good way—including new and exciting training at work, a week away from home helping the ASPCA care for dog victims of our nation’s second largest dog-fighting bust, and searching for, buying, and moving into a new house (which in itself felt like a second job). Those are some time-eating things!  Sprinkle in Thanksgiving and a few not-so-good things and here we are three months since my last post.

I prefer the term 'companion animal scan'. 

Enough about me, let’s keep talking about other parts of me. Amid all that craziness, I had to deal with the MRI’s (from September) questionable results. After a small tug-o-war with the doctor’s office, I was able to get them to order one of the scans recommended by the radiologist who read that MRI. They ordered a PET (Positron Emissions Tomography) scan. This was an interesting procedure, to say the least. From start to finish it was over two hours which included an injection of radioactive iodine in my veins. Thankfully I had an amazing nurse who was an expert in nuclear medicine and a master at putting someone facing this scary scan at ease. At least he laughed at my jokes.

I tried to get out of an actual face-to-face doctor visit to get the PET scan results but after he threatened to bill me for a phone consultation (whatever happened to caring more about the patient than the fee?), I conceded and went in to discuss my results.

All-in-all it was a positive visit. Most importantly, my scan showed NO SIGN OF CANCER masses. That message was muffled among the medical mumbo jumbo in the report but once we got to the heart of it, my husband and I made the doctor actually say it. With a small grin, he finally muttered, “As of now, you’re cancer free”. It was like music to my ears. A tiny party erupted inside my head with Dr. Do-Everything-I-Say at the center of a Mardi Gras style parade rolling through a cheering crowd from atop a white convertible.   

Yes, exciting news indeed. But after the party in my head died down and the little bald man was sweeping up confetti, Dr. Buzz-kill went on to insert warnings, concerns, and repeat scan requests into this otherwise joyous visit. According to statistics and considering the aggressive nature of my cancer, I have a somewhat significant chance of recurrence in the next year. Gulp. The risk goes down as time goes on—there is a 50% chance it will recur in the next two years, 40% in the next three years, and at five years, only a 10-20% chance of recurrence. Not so hopeful for the first couple years so getting too comfy now is foolish. But, his words play over and over in my mind….you’re cancer free….you’re cancer free.

When I refused (again—for the hundredth time) his offer/request/push to take anti-estrogen pills we settled on an agreed plan of action for the near future: take daily Vitamin D and turmeric, continue taking nightly melatonin, and submit to a mammogram in February and repeat MRI in April.

I’m aware of the recurrence risks and the doctor’s warnings stay with me, but for now I’m living as if it never even happened. I am happy.

Patchy, Persistent, What?

Feeling great this summer and keeping busy with four separate visitors, a demanding work season, sunny Seattle days, and a new sweet-as-hell kitten—makes for a good formula for not allowing cancer to fill my mind. Also, I feel like I was robbed of the winter which has made me want to take advantage of every fun moment of the spring, summer, fall....

Just as I’m pulling out of the cancerhood parking lot, I hit a bump. Nothing too serious (I think/hope), but still concerning. It’s been 4 months since I ended radiation and 8 months since driving to the depths of hell chemo.

I recently noticed some sporadic pain to my breast so I called the doctor’s office to ask when I needed my first recheck/follow-up appointment post-treatment, and of course they tried to get me to come in for an appointment. But, knowing that they’d likely just look me over, order a scan of some sort, then ask me to come back with the results, I decided they should just order the scan now then I’ll come in with the results—all in one visit. (Seriously—I can’t tell if they just do things because they are simply following protocol without concern for individual patient’s ability/need/common sense, or they just want to bill my insurance for an additional visit even though they would see very little into the situation without a scan and therefore fail in offering a prognosis and plan, or both). Luckily, they conceded. The doctor ordered a breast MRI and I had it last week.

Following the request of the office staff, my appointment to get those results was made for the following week—meaning I would wait about a week for the results of the MRI. Yeah, I can wait, right? After all, it’s nothing and I’ll just put it out of my head until then. There are lots of other things to think about and deal with. Well, apparently I’m just human after all because after a few days of guessing, worrying about, and dreading the results, I realized I didn’t want to and shouldn’t have to wait. They know my results, why shouldn’t I? Even though I couldn’t come in until the following week, doesn’t mean I should have to wait to know the findings. The long and the short of it is, I called the ordering doctor’s office again three or four days after the MRI to get the results, they hadn’t been read yet (no rush, right?—it’s only my body), so I pushed to get it read but didn’t hear from the doctor who ordered it so I called the imaging center directly and requested they fax the results to my work’s office—and they did.

The problem with having an MRI report without the advantage of the doctor to interpret it is a bit dangerous. I can understand just enough to know that the breast tissue (seen without “enhancement”) is consistent with what’s expected given all it has undergone, but not enough to know how serious the “patchy persistent enhancement” seen in my pectoral muscle and chest wall are. The report reads that further scans are recommended. Okay, now I’m scared.

I’ve had these results all weekend without a call back from the doctor or nurse practitioner (yes, it’s a self-created problem, I see that) so it’s been very hard to not worry. Take it easy, Amy, it’s probably normal, I tell myself. No, don’t look it up online, that’s the worst thing to do. Okay, maybe just look at online medical journals and not at any blogs. Oh, damn—nope, that made it worse. Stupid internet. This is how people end up boarding up their house and wearing aluminum foil hats.

Thankfully, I have a kind friend at work who gave her shoulder and a supporting brother who offered humor and distractions, and said, “I’d probably do the same thing” which helped a ton.  Thank you guys for not telling me “Don’t worry about it.” or “Stop looking online!” because when you’re in this, you just can’t help it and I’d say that’s the last thing someone in this situation wants to hear. My fabulous husband kept me busy this weekend and my dear friend “Emma” joined me for dinner, wine, and coconut milk ice cream—which should be the cure for any ailment.

I made it through the weekend and will get the doctor’s decoding of the results this week. More to come. 

The End (as I see it)

So many times I thought I’d never make it to the point of writing a “post cancer” blog entry. But here I am and it feels wonderful.

Thank you all for the tremendous support in the form of a shoulder to cry on, a listening ear to my fears and concerns, blog post comments of encouragement, cards, gifts, texts, bath soaps on my doorstep, emergency dog care on surgery day, vegan baked goods, the softest homemade pink post-surgical pillow, a new Vitamix (omg?!), a ladybug hat, a personalized giant gift basket, homemade vegan soups, a book on amazing crows, a Webster family cancer package including treats for all species in the house, a bouquet of fruit with totally normal Bar Mitzvah balloon, a BFF friendship candle, a tiny wooden flat hand-colored sexy doll, and brotherly love in the form of a blog entry and a party to celebrate my victim-to-victory-hood. You all are the reason I made it through this alive (and let’s face it, sane).

Throughout this medical mess, the word brave was thrown around quite a bit. Maybe I didn’t hide from the doctors in a psychotic state of denial, run through the streets crying (except for that one Tuesday afternoon), or go to Army to get away, but I’m not brave for facing the cancer. To seek treatment for myself for a disease that I have, it takes more selfishness than bravery in my opinion. Thank you for your kind words, but I don’t consider this bravery. My friends are brave—working each day with authorities across the nation to track down animal abusers on case after horrendous case while facilitating safety for those tortured animals; tirelessly fighting the arrogant masses to allow basic equal human rights for LGBT citizens; and standing in front of busy KFC’s and McD’s each week amid angry lunch goers on behalf of the billions of chickens and cows brutally killed for a combo meal. Bravery is risking your own safety and setting aside any resemblance of personal comfort for weeks to document industrial animal cruelty behind closed doors. You, my friends, are brave and you are my heroes.

So, I feel great and have been back to my happy/active/jokster/over-scheduling/animal-defending self. I ran two 5K races this year so far and dancing with our Kinect is my new favorite work out (thankfully it’s done inside where no one sees my fumbling too bad it’s done inside where no one can see my fly moves). Sure I still have some mild side effects left behind, but when I think about how I felt in the weeks coming into this year and compare that time to now—I am filled with a deep appreciation for this normalcy.

“What if it comes back?”

Yeah, I’m not super woman and this might come back. But I’m not the type to worry or succumb to paranoia because of “what if”-s. If the cancer comes back, I’ll deal with it. Until then, I’m moving forward with a new attitude toward lessening obligations, playing more, loving more, appreciating more, eating fresh/organic/local, NOT caring what dress size I’m wearing or what the scale says, and striving to give back as the best vegan I can be. Oh, and I’ll eat cupcakes when I damn well want to.

Pink - Love the Color, Hate the Campaign

Can you tell pink is my favorite color? Anyone who knows me knows my favorite color is pink.  There is something warm, welcoming, and very happy about pink to me. I’ve always felt that way. I chose the background color for this blog based on my love for pink and NOT because of some ridiculous, greedy campaign connected to my diagnosis (can you see where I’m going with this post?). 

I’ve always loved pink. In my middle school home, where the carpet was ugly green in my room, and for the first time I was given the freedom to choose the color of my walls, I painted them pink (then plastered Bruce Springsteen and Madonna posters over them, naturally). I thought of it as a flower—pink blossom, green stem and leaves. I have enough pink clothes that I have a "pink pile" for laundry (the first step is admitting it).

I despise the pink ribbon campaign. Even before I looked into it and learned there are many women like me who realize how inflated and (most importantly, since people who buy the pink ribbon crap think they’re helping) unhelpful it actually is in curing cancer. Once you research the amount of money the pink ribbon campaign and the Susan G. Komen foundation rakes in and compare it to the amount that actually goes to research conducted to cure cancer, you’ll agree that it’s a huge scam. The thinkbeforeyoupink.org watchdogs have exposed it all on their site.

Additionally, the SGK foundation funds animal testing, which is the first reason I’d never give them a dime. Animal testing is neither ethical nor useful in curing cancer. Many groups conduct serious cancer-curing work without animal tests—the American Breast Cancer Foundation, Keep A Breast Foundation, Breast Cancer Fund, Dr. Susan Love Research Foundation, and my favorite, BreastCancer.org. Animal testing has been found over and over again to be unreliable. For example; Taxol—a powerful chemo drug which I was given, was pulled off the market for many years because it was ineffective in treating the cancer we infected animals with. Yet, today doctors and scientists regard it as one of the most effective drugs in curing cancer (I’m an example of its effectiveness) in humans. There are countless other examples.

Just as deadly as the gun;
a bucket of fried cruelty and hypocrisy.

Oh, and please allow me to point out the hypocrisy in some of the pinked out products. The pink KFC bucket of fried chicken flesh was the worst—talk about marketing something that is strongly linked to cancer and has attracted media attention for being grossly unhealthy, now eaten out of a pink container so your money can go back to fight the cancer you’re getting from eating it. Just as bad, are all the products with harsh carcinogenic chemicals, pollutants, and toxic materials made into pretty pink merchandise—falsely promoted as helping to find a “cure”. It’s rather insulting when you think about it all.

Look closely, there's a ribbon on the barrel.

Lower on the list of reasons I hate the pink ribbon campaign is a personal insult to having my favorite color smeared all over athletes, plastic toys, yogurt cups, “ta-ta’s” t-shirts, buildings, and even diapers (doubly insulting). This was (is!) my favorite color—used, abused, and exploited like a bear forced to perform in a circus. What a beautiful color, beat down and turned into something terrible. I refuse to let Susan or the Colonel take my color. I still love pink (even though my reaction to discovering a pink ribbon on the tag of a beautiful pink scarf in the store is akin to that of a dog who’s been given a green bean as a “treat” for the first time—disappointment and disgust), I just look harder for things that are truly pink for pink’s sake, which is really difficult in October.

If you are interesting in learning more, read Ingrid Newkirk’s Huffington Post blog post on the SGK foundation, and visit the Physician’s Committee for Responsible Medicine (PCRM) site for information on unnecessary and cruel animal testing. And if you’d like to donate to a cause that helps fight/prevent cancer without cruel animal tests or overblown campaigns that steal people’s favorite colors, visit one of the organizations I listed above. And please don’t be fooled by the pink ribbon campaign. Friends don’t let friends give money to greedy animal-torturing, corporate-funded, favorite-color-stealing foundations.

In case you're counting, I was able to get the word pink in this post 25 times. I love pink. 26. Nailed it. 

No Means No

As I approach the end of the line with breast cancer treatments, I realized that a large part of the hardship—at least for me—is arguing coming to an agreement with the doctors. Along with harsh medications, scarring treatments, loss of time at work, sickening side effects, and rising doctor bills, came the abundant stress of debating with doctors on what should/will be done to me. It’s not easy to challenge medical professionals. I’ve had to not only research each test, treatment, and medication they so matter-of-factly want me to submit to, but also find the courage to look objectively at each and speak up. They are not all necessary. Contrary to common belief, much of what doctors want us to do is not needed. Most modern medical care regimens fit the standard of what a hundred doctors before them have done and fill the wallets of the medical upper-ups, insurance companies and most of all—pharmaceutical companies. We all should be more skeptical when visiting with doctors and far less willing to just take their word for it.

Now, let me jump down from my soapbox here. Just had to get that off my chest [insert breast joke here].

As I approached the end of radiation, my traditional oncologist asked to see me so I can start hormone-blocking therapy once radiation is finished. When does it end? Instantly, I am inclined to say ‘no’! But I decided (with a little push from my husband) to hear him out and learn what exactly I’m saying no to. Here’s the recommended cocktail: Zolodex, Femara, and Tamoxifen (not all at once, but given in a planned out order/length based on my situation). Each of them is highly regarded and is trusted in preventing recurrence of breast cancer. Studies (that I’ve read independently of what my doctor has told me) show a decrease in recurrence by taking these hormone blockers.

So, why wouldn’t I take them, you ask? Mainly because this is only a preventative measure and not a treatment to kill current cancer. Maybe part of my reason for declining this recommended regimen is also a desire to have control, even if just over one last piece of all this. I’m not sure. But one thing I’m certain of is this decision to say no.

Another big reason for my refusal of taking these drugs is the long list of side effects. Included in the list are: mood swings, hot flashes (I couldn’t possibly take any more!), loss of libido, weight gain, bone pain, headaches, nausea/vomiting, drowsiness, fatigue, high cholesterol (what?), vision problems, vaginal bleeding, shortness of breath, hair thinning, dizziness, chest pain, pelvic pain, and “difficulty speaking or understanding.” No way I’m putting up with that list of shit along with the residual effects of chemo, surgery, and radiation.

As I said, I’m quite confident in my decision. Actually more so now than I have been with any of my cancer-related decisions this far. So, despite their best efforts, my answer is no. I will not go to the prom with you, Tamoxifen. 

Radiation Tribulation

I’m now in my forth week of radiation. For anyone reading this blog facing radiation or supporting a loved one who is undergoing radiation, I offer my take on it.

The center I frequent daily for radiation is far from my house but is really nice. It seems brand new with all the best equipment (which was a tad concerning….need to be sure this isn’t a “plan B” after losing medical privileges in another state, or that this practice is truly brand new and I’m one of a “trial group”). After researching the doctor and learning he has no pending or past malpractice suits (that are findable through Google anyway), it seems that everything is legit.

Meet the staff:

Bubbly Betty—the Medical Assistant, who is happy and far more chatty with me than I wish to be with her.

Ms. Casual—the radiation technician who is funny and lighthearted but a bit too unprofessional at times. Sure, if we met in a coffee shop or at a party, I’d think she was fun. Instead, we’re brought together so she and her colleagues can shoot damaging rays through my chest. So excuse me if I wish she was a tad more focused.

Mr. Serious—the lead radiation technician who is all business. Even when Ms. Casual is going on about tattoos or dancing, and he surely has something to add, he sticks to discussing the somber things at hand, like “fields” and “images” and “alignment”. He’s my favorite because his determined personality summons my trust.

Dr. Pushy—you met him in my last blog. He’s a highly educated, smooth talker with an upright posture that likely impresses many people. Meh.

One of my biggest challenges with all this has been in getting Dr. Pushy to agree to only radiating the areas I’m comfortable with. For the first 6 days, he not only sent rays into my breast and my axilla lymph nodes (both places where cancer cells have been found and likely still remain), but also into my “supraclavicular” space to hit lymph nodes there as a preventative measure. Since no cancer was found in those nodes, and the radiation would damage ½ of my thyroid, possibly my larynx, my vocal cords and my carotid artery in the process—I tried to opt out from the beginning. Being heavy on the preventative reasons to treat that area and light on the negative effects from it, Dr. Insistant McPressure didn’t seem to give me all the info. He definitely seems to hold the attitude that as a physician, he knows best and patients should comply. In the end we agreed to not treat that area and only radiate my breast and axilla nodes. He finally said, “It’s your body, your choice”—where have we heard that before?

The only thing that's missing here is the redness inside the dotted line (this was taken after my first week). 

I'm thinking a new tattooed animal liberation scene might be the best way to 

heal and cover the scars and discolored skin after this is done.

The contraption bed I’m placed in for daily treatments seems somewhat of a medieval punishment. I lay on my back with my hands above my head and head turned; topless. Although they tattooed 5 dots on my torso for alignment, Mr. Serious still must use a blue marker to draw dotted lines around my field. Surely this is enough proof to get me out of a ticket should I get pulled over for speeding to my treatments.

Here you see a picture which I assume someone sketched of me at my daily radiation treatment appointments. 

Uncomfortable "bed", bare-chested and tended to by 4 wizards. Yeah, this must be

how it looks. 

One thing I had difficulty getting used to was the apparent “open door policy” the radiation room has. As I lay in place with my left breast highlighted with an x-ray light and surrounding dotted line, any or all of 4 people (both technicians, the doctor, and the medical physicist—not sure why he needs to check on things right then) will come in and out while the door is open. They’re polite enough, but they could do a better job announcing (or even, dare I say asking) before they enter. I mean, it’s not like I’m undressed—wait, yes it is. This plus my exams each week by the doctor with one of the two medical assistants who work there—tips the scale in favor of staff in this clinic who HAVE seen my breasts. I could have never predicted spending so much time topless with people I don’t know. Surely, this should at least earn me a spot on their Christmas card list.