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. 

Radiation Consideration

The difficult decision to do radiation came after many hours of consideration, research (by me and my amigos), second/third/forth/fifth opinions, and a losing coin toss. 

Just kidding……….it was only 3 opinions.   

I visited a new radiation oncologist a few weeks ago on the recommendation of my traditional oncologist. While I was not impressed with his personality or demeanor, it was this visit that finally convinced me to have radiation treatment. This new doctor is a bit car-salesman-y and gives off an ‘oh, don’t you worry yourself about details; trust me, I’m the doctor’ vibe that I detest. But it’s not his personality I need, it’s his expertise and after all, I do trust him.

Dr. Pushy made me realize that the risks of cancer from the radiation (yeah—aint that a bitch?!) and damage to my heart are minor in comparison to the high risk of the live cancer cells left in my breast tissue forming a tumor again à recurrence. So, radiation it is. 

Here’s a glimpse at my pros & cons list of doing radiation.

Acceptable benefits:

·         Kill remaining cancer cells in my breast tissue and lymph nodes (kill or be killed, right?)

·         Will get everyone off my back about doing more (here’s the real reason, just being honest)

·         Nothing is injected into me (that’s what she said)

·         Treatments are painless (much more than I can say for the animals who were tested on to develop these treatments)

·         Each visit is relatively quick (except when they’re not)

·         I have time to reconnect with the old CD collection in my car (and perfect my in-car solo singing skillz)

·         Yeah, I still have CD’s in my car, whatever (which CD’s however, is likely quite embarrassing and top secret……but those who know me well, know it includes everything put out by Concrete Blonde, Neil Diamond, and Cyndi Lauper)

·         I can work—from home—because I won’t be sick and I have the best manager a girl could ask for in a time like this (seriously, I have an amazing support system at work) 

·         This treatment center—as opposed to a hospital—only does radiation for cancer patients (no fighting for parking in a garage or sharing the waiting area with virus-filled kids)

·         Only mild side effects: fatigue and sun burn-like burns to my skin (yes, there’s parenthetical commentary for each one, so what)

Barely acceptable negatives:

·         The rays will hit 5% of my left lung (not might or could, but will)

·         Damaging ½ my thyroid because Dr. Aggressive is radiating my supraclavicular area that extends to my neck (what the fuck!?)

·         Treatments are daily, Monday through Friday for 6.5 weeks (that’s a lot of time for belting out Forever in Blue Jeans  at the top of my lungs)

·         The radiation center is way south of my house so it’s an hour of just driving each day (and not during a time that my east coast friends can chat)

·         Meeting new people—the center’s staff and other patients (notice which list this is under)

I have had the pre-treatment CT scans, alignment with marks (including 5 tattooed dots—not quite sure how the techs distinguish them from my field of freckles), and a few consultations. I have completed the first of 6 ½ weeks of radiation treatment and so far so good. Only one issue that I need to address tomorrow with the doctor during our standing weekly meet—adjusting his target field to avoid my thyroid—which I’m nervous about. No symptoms from radiation yet. 

This is the machine that delivers the radiation doses. Obviously this isn't me because this person isn't topless. 

There’s so much to share with you all regarding treatment, but that will have to wait for my next post. Thanks for reading!

Post Apocalyptic Update

It’s been 10 weeks since my last chemo treatment and 7 since my surgery, and I feel great! This is really nice since for some time there, I wasn’t confident that I’d ever get back to even somewhat-normal.

I still have residual chemo side effects that are noticeable to me (who knows what kind of hellish underlying and unseen side effects I have). At the top of the list—and ranked worst—eye issues. During chemo (or what my eyes would call “The drought of 2012”), my eyes were severely dry, leaving them now with some sort of residual cloudiness that often affects my vision. I’m moderately concerned about it but trying to give it some time to return to normal before taking drastic actions, like seeing another [gulp] doctor. Second on the list—the hot flashes. Sure they’re painless and rather brief, but they are completely unpredictable and super inconvenient. In the privacy of the home, they transform an ordinary TV watcher into what appears to be an insane maniac with delusions of being set on fire, stripping off layers of clothing as if in a timed contest. At work, they make concentrating during meetings difficult as upper-lip-sweat forms without notice for no obvious reason, and fantasies of nude skiing take over all thoughts. Not sure how it goes down for other women—is that about right?  

These marks on the thumb nail beds are common for chemo patients. Just the thumbs. 

It's like a secret handshake for cancer victims.  

There are a few smaller side effects left behind in the wake of the battle, but for the most part my army of cells have repaired themselves and I’m feeling quite wonderful. My spirits are up and I’ve savored some fun moments with friends and family, am getting back to my active self, and I’m even enjoying normal affairs like working (although my job is fabulous, I must say!). Surgery has left me with lingering numbness (nothing feels stranger than shaving an area with no feeling), a tiny bit of pain, and palpable scar tissue, but I have 95% of my range of motion back and am back to normal arm function. Hooray!

My hair has finally started growing in. It sure took its sweet time but now that it’s growing, I have let go of the fear that it was gone forever. I’ve only been wearing my wig for 2 months but I’m already itching to ditch it. Now that my hair is growing, it won’t be long before I go wigless (I’ve already tried a couple wig-free-in-public test runs). Oh, and it seems the chemo caused all my hair to turn gray. Yeah, it was the chemo. Damn you chemo.

Is it long and luxurious yet?

Pathology without Apology

This blog post could have gone one of two ways, and I wish I were writing now about encouraging pathology results after surgery. Instead, the reality is that the tissue removed during my surgery—although lacking the tumors—still showed live cancer cells within the breast tissue and right up to the margins. That means, you guessed it, it’s highly likely I have live cancer cells still in that breast.

So now what? After bouts of crying, swearing, and feeling sorry for myself as a defeated cancer victim—the reality hit that I need to face this and make the big decision on what to do next.  Naturally, the surgeon recommended more surgery, the radiation oncologist recommended radiation, and the traditional oncologist recommended both (in a nutshell).

Heavy, bad news like this yields lots of thinking, analyzing and even bargaining. I am not even close to knowing everything I need to, to make a decision about what to do next. For now, I am doing two things. First; taking my time in gathering data on the benefits, side effects, and harmful aspects of radiation, hormone-blocking therapy, and mastectomy surgeries (thank you to all who have offered to lend a hand with this part—it’s so vital and a huge help to me!). And second; enjoying normalcy (with a dash of denial) with some meaningful times like a visit with my brother MD and taking my husband away for 2 nights to a vegan B&B.

Now, I am keeping an open mind to what the doctors have recommended. I haven’t made any concrete decisions so far. However, I very much want to do nothing more (please don’t say I want to do ‘nothing’ because I may assault the next person who says that—we must not forget the harsh treatments I did go through or the significant surgery I did have).

This may be tough to understand, and certainly is an unpopular view, but I don’t feel that everything must be done to preserve my life. Our culture supports the idea that all human life is sacred and therefore everything that can be done to save a human, should be done (no matter the cost to animals, the environment, or –gasp–  other humans). This human-centric idea doesn’t come naturally to me, as I know we are not superior to the animals with which we share this planet. It is not all here for our taking, to keep us all alive for as long as possible. Further, I have always believed that cancer, AIDS, and other diseases of mass destruction are a natural means to control overpopulation. At the rate of our growth, and obliteration of natural lands and resources, it’s clear that our beloved Earth cannot support the blight we’ve become to her for long. My views about this haven’t changed just because I’m one of the infected. Too many babies born, too many humans kept alive by modern medicine and the mounds of resources used for those to happen, take great tolls on the Earth. Something has to give. Perhaps I am part of that something.

Whoa, it just got real deep here on this simple, pink blog. It may not be a shared view, but surely is important to think about. All the energy, plastic, animal testing, pollution, water, land damage, and whatever else it will take (and has taken) to keep me alive—just ONE human—seems absolutely ridiculous, wasteful, and unfair to me. I better be among the world’s biggest contributors if it’s all to happen just for me, right? Well, I haven’t been so if I go further with treatment, I must step it up!

On a more simple side, and as the saying goes, death is part of life. It’s true. Even if I had hoped it would come much later, it’s inevitable. We’re all going to die, and although I can’t control the damage we’ve done to the planet, the animals, and each other, I can try to control how much I impact the world.  

Man, I feel like I should put a joke here, to lighten this up some. Um….how many hippies does it take to screw in a light bulb? Answer: Hippies don’t screw in light bulbs, they screw in sleeping bags. Nailed it. 

Possibly the best piece of advice I’ve been given throughout all this is from EM (and also by Dr. God). She said that no matter what I decide, I need to be 100% comfortable with the decision. It might sound simple, but she went on to say that even if down the road I face negative outcomes as a result of my decision, I must be as comfortable then as I am now with the decision. So, if I decide to do nothing more and in 3 years, I’ve developed more tumors or the cancer has metastasized to my lungs, I need to still feel good about what I did. No regrets. It’s the best advice I have received. 

Zero Dark Surgery

There is so much to write about around my cancer and current progress but today’s post is strictly about the surgery. As you may have guessed, I survived. Only my second surgery ever, it was scary and intimidating yet I pulled through and am coming to you now from the other side of the experience.

R2 and I learned that on important days like this, other urgent matters don’t politely sit back so that we can calmly deal with one crisis at a time. No. Our sweet 4-year old PETA-rescued pup had become progressively ill and needed as much attention on my surgery day as I did. Thankfully we have an amazing friend Blue, who tended to our beloved canine while R2 tended to me.

The first obstacle for surgery was the “mapping” procedure. When I checked in at the hospital, bright and early with nothing but boring black coffee in my system, I was directed to a mammography room. First, let me note here that I was unaware that this procedure involved a mammogram. This was my third mammogram in 4 months and I was not happy. But, there was little I could do. The snarky radiation technician didn’t help when she said, “You get more radiation from flying to San Francisco than from a mammogram!” at my concern. To that, I replied, “But I’m not flying to San Francisco today, right?”

I wasn’t able to get out of this dose of radiation exposure, but as a patient (or just as a person, for that matter), I will always question what goes into and through my body. After quietly freaking out, I was calm and the “mapping” procedure was a success (even Nurse Do-As-I-Say eventually warmed up to me).

Grover, you nailed it.  

With 4 wires strategically placed, anchored in my tissue, and protruding from my breast (yet neatly bandaged for protection), I waited for surgery. After 2 hours—filled with concern for our ailing dog at home, surgical anxiety, uneasy jokes, Draw Something matches with J-Pink, and stomach-grumbling hunger—I was finally taken back for surgical prep. My IV was placed and every medical history question ever dreamed up was asked by everyone who entered my space. When my surgeon came in to confirm the plan, he tried once again to talk me out of the removal of my chest port, asserting that I may need chemotherapy again one day. Once more, I assured him of my confidence that I’d never use it, as I have unfriended chemo from my life forever. The consent forms were signed, I kissed R2 good-bye, and I was wheeled away into surgery.

[There’s a gap in time here—about 3 hours—in which I can’t quite recall details…..]

After surgery, I woke up among other patients of various surgical adventures. Because I had been under anesthesia longer this time, I was very tired and wanted badly to go back to sleep. However, the nursing staff kept me awake and seemed bent on engaging me in deep, annoying conversations. I was disinterested in entertaining their mission to discuss my surgery or detailed aftercare. When R2 was finally allowed back, I was so grateful that he could be at the receiving end of their incessant instructional dialog.  

Finally home, R2 dropped me off, left 2 Tylenol and some water for me, and then rushed to meet Blue who was at the vet with our sweet girl. What a stressful day for them! Luckily, our sick pup was able to come home with meds and she was back to her healthy self in a couple days. We couldn’t have handled the stress of the day if not for Blue—our surgical-day shining star!  

Now for the gross part. Stop here if you’re the kind of person who can’t watch The Walking Dead. Anyone who’s had surgery that removed any significant amount of tissue understands the disgusting dance with a drain tube. Mine exited my body on the side of my rib cage with a long tube leading to the clear collection bulb. It was cumbersome, uncomfortable, and needless to say, quite unpleasant to deal with. I was instructed to empty its contents into the marked cup, measure the volume, and record the drainage amount on the form given at my discharge. Gross. It gets better. After 10 days of cohabitating with this thing (and not wanting to make another doctor appointment just to take it out), I removed the tube myself. The bloody tube was—just kidding, I won’t force the gory details on you. You get the idea. The next week when I saw the surgeon, he was surprised that I had taken the tube out but didn’t lecture me (lesson learned—always remove my own drain tubes).

Now that it’s been a couple weeks, the tube is out, and the bandages are off, I’m on my way to Healingville. Wrestling with some scar tissue, numbness, and pain, but overall I’m getting better each day. Stay tuned for more. Next up: pathology test results.

Wednesectomy

It’s been a confusing, frightening, and frustrating couple of weeks with regards to doctors, test results and more specifically, what to do from here.

First, the good news…..my post-chemo MRI showed no sign of the tumors and my enflamed lymph nodes have returned to normal size…..[pause for applause]. This was just the exciting news I needed. All those awful things I said about chemotherapy—and it worked! Then again, I suffered significantly so it damn well should work! I’m not taking back what I said. Chemo knows how I feel about it.

After a light visit with the oncologist, it was refreshing to leave the cancer center on cloud nine from the positive news. He advised that a lumpectomy is still necessary to remove the tissue where the cancer started, and then if the pathology report comes back negative from that tissue, I’d be considered “in remission”. I can handle that. Good news indeed! Not so fast—there’s still the surgeon’s appointment to go, and he had a much different take.

The surgeon seemed to almost ignore all the hard work chemo did in killing my tumors, and the hard work I did in staying alive during the battle. He recommended a total mastectomy to be sure all the tissue and residual cancer cells (which do not show up on the MRI) are removed. I told him I wanted to start small and see what the pathology report shows. He then said I will need to do radiation (WHAT? But I ruled that out several posts ago! Apparently, Dr. Scalpel hasn’t been reading my blog). Each time I tried to tell him that I’m not doing radiation, he pushed back with smarty-doctor reasons that I should. Finally, we agreed that he would show my case to his radiologist for his opinion and he’d talk with the radiation oncologist as well (but I think you can predict what she’ll say).

Like most doctors, Mr. Mastectomy didn’t call me on the day he promised. Instead, 3 days later. Again, we played a verbal game of tug-o-war where he quoted the radiation oncologist's recurrence percentage without radiation and I quoted the same expert’s side effect list. I argued that if there was a 100% chance of NO recurrence with radiation (and surgery, and chemo), I’d do it and live with all the lasting damage. But there is not and since nothing is a guarantee (except the awful side effects), I’d like to take this one step at a time. It has become apparent that Captain Incision was trying to get me to either consent to the partial mastectomy with radiation or total mastectomy—one of the two only. But eventually he settled for the partial without radiation since that’s what I chose. This is still my decision, right?

Tomorrow I’ll undergo the partial mastectomy (also called quadectomy, since it is the removal of ¼ the breast). The tissue will be taken to the pathology lab and I’ll forever miss it. I’m optimistic and anticipate good news from the pathologists.

I’m quite nervous about the surgery, yet confident in my decision. I accept the risks and know this is right for my body right now. If something goes wrong, please honor me with vegan choices. And if everything goes right, please still honor me with vegan choices. <3

Wigonometry

Knowing I would lose all my hair, I decided to embrace the hairless look with a positive attitude and lots of cute hats when I first was diagnosed and faced chemo. I did pretty well throughout my treatment, although, I really missed my hair.

Now that I feel better and chemo is over, I’d like my outside to look like my inside feels. So when a friend recommended a fancy hair replacement place, I decided to check it out. They were nice, informative and gave me a wonderful private consultation. Once I learned that my insurance would cover most of the shockingly high cost of the hair piece, I was even more on-board and decided to go for it.

The best part was the description on my doctor’s prescription and on the insurance claim; I was applying for coverage of a cranial prosthesis. While fighting working with the insurance company to cover my “durable medical device” at the higher percentage, I called almost every day for 2 weeks. Each time, when they asked what the device was, I’d say, “Well, I call it a wig, but you guys call it a cranial prosthesis.”

Once I succeeded in getting the insurance company to approve my faux-follicles, I ordered the in-stock piece from the fancy salon. When it came, I had an appointment to get it cut and styled to my taste. After not having a real hair on my head for weeks, it felt strange—almost comical—to sit in a salon chair while the stylist cut the long locks that laid on my head.

Looks pretty real, doesn't it?

My new head piece has been quite the boost in my spirit. As my body starts to feel better, my confidence has been lifted as well. No more out-of-place winter hats worn in heated meeting rooms or cancer-y sympathy-provoking head scarves. Now I’m just an average woman with plain hair stopping at the store for tofu and dog treats on my way home, like everyone else. What a luxury it is to feel like “everyone else” for a while.   

Enough is Enough

Last week I endured my final chemotherapy treatment. Like the others before, it was harsh and I mentally kicked and screamed before and during. Yes, it was my last one and by all accounts, I should be cheering “Hooray! Hooray! I did it!” but it’s difficult to celebrate when still facing the miserable toxin-sponsored days that follow, the weeks/months of lasting effects, and the looming threat of a physician’s advice to do ‘just a couple more treatments’.

For many people, it’s easy to summon logic in deciding whether to do additional treatments recommended by a doctor. And for some, they’d follow the advice of the white-coats no matter what, because they are the “experts”—but that certainly is not me. The doctors and medical staff only know the science, chemistry, medical operation, and statistics (yeah, I said “only”) of what a “couple more” treatments could do for my tumors prior to surgery. What they have no knowledge of is the me of it. They cannot possibly see all the long term effects the poison of chemo may have left or the harm it may have done to any of my systems, and they do not know how low it drops my quality of life.

The chemicals that were pumped through my veins were nothing to take lightly, remember. Every drop that invaded my tissues brought with it a rusty bucket full of life-sucking side effects and haunting long term symptoms. These are highly potent chemicals—so toxic that the specially trained nurses who administer it, are required to wear protective clothing just to handle it, and chemo recipients must take special precautions for 48 hours after each treatment to ensure others don’t come in contact with the chemical agents. So even though I’ve had 8 treatments, the decision to have even one more, is just as serious and horrifying as when I started.

One other point to remember is that chemotherapy is no guarantee. It may be the most widely used cancer management in America today, but it’s never a 100% guaranteed cure. I’ve read much more on the topics of cancer, breast cancer, chemotherapy and naturopathic remedies than I ever wanted, and I’ve learned that many times not only is chemo not a complete end to invading cancerous cells, but it has been blamed for causing some types of cancer. Isn’t that some shit?

After all those heavy considerations above, let’s also not forget that I did eight weeks of grueling chemotherapy. If you’re inclined to judge me because I won’t do more treatments (or worse, encourage me to do more), remember that despite my treacherous dance with chemo, I kept going, all the way to the end of the doctor’s prescribed 8 rounds of Lucifer’s semen. I completed the original plan of chemotherapy and will have surgery—two radical methods of killing the cancer.  

Not facing the torture chamber this week has measurably lifted my spirits. I’ve had such a happy week and can taste a sampling of the joy that life can be again (even ordinariness sounds blissful), and I’m not willing to go back to the dungeon. If, at some point down the road, cancer shows up again then I will work harder to find alternative treatment methods that don’t involve sending Jason Voorhees in through my chest port to obliterate my cells. Hopefully that alternative method will only be offered in a beautiful spa in France.

Chemo-cal Changes

As I approach what better be my last chemotherapy treatment [shaking fist], my fear that I’ve been forever physically changed has not diminished in the slightest. But it’s not just the physical changes. Lately, I can’t help think about the other ways this wretched ordeal has changed me.

As I’ve mentioned in past posts, I’m constantly concerned that I won’t go back to my healthy, happy, able-bodied, never-get-sick, doctor-dodging self. Oh sure, many people have undergone chemotherapy and later went on to live ‘normal’ lives, but enduring 8 weeks of poisonous toxins surging through my system, is sure to have lasting effects, right? Will I seriously be able to overcome the physical revolution—weakened strength, old woman endurance, absence of taste, injured immune system, neuropathy, hair loss, and so on and so on (if you’ve read my blog, you know I’ve been reduced to a dawdling Roger Smith)—that has swept over my body?

What are not so obvious are the social, mental, and emotional changes that come from having your insides corroded with acid and replaced with a weaker, whinier version of what once was.

Socially, I’m viewed differently than I was a few months ago. That’s just the reality of where I am. Before the crippling chemo, when my friends would call or text, we’d talk about our companion animals, relationships, animal rights concerns, social issues or food (lots of food talk)—and enjoy tons of laughs. And when either brother called, we talked about fun things like movies, family, football, my nephew, edibles, and last night’s excitement—depending on which brother. Now, when anyone calls, it’s mostly centered on how I am feeling, what the doctors have said, and how many treatments I still have to go. It’s important and of course relevant to my current position, but damn, it must be so boring for everyone! Who wants to always hear about how sick I am (because you know I’m not shy about expressing the truth of chemo’s side effects)? It’s no wonder some people have stopped asking.

When it comes to being active with friends or family, I’ve pretty much taken myself off the playing field. In the beginning I thought I could (and did) do more. But now that the toxins have been pillaging through my veins for weeks—each additional “treatment” adding to the convoy—I’ve resorted more of a hibernation lifestyle. Through this, I’ve felt the warmth of friends who I never knew had it in them, rise up to my side (making me vegan mac & chz, as one example) during these treacherous weeks in so many ways. Conversely, some folks I hoped would be there for me have proved to be more of the fair-weathered types. I’ve learned so much about myself, my husband’s commitment, the strength of my friends, and the power of medicinal marijuana (truthfully, I haven’t even had the courage to try it during all this…….I know, I know—if ever there was a time, this is it).      

The changes are palpable, both physically and socially. Will I be able to return to “normal”? I really hope to recover from these changes, or grow and blossom because of the strength I’ve gained and bonds I’ve reinforced. Thank you all for reading and supporting me, I couldn’t do it without you. Please don’t forget me, I’m almost done! 

Let's Be Real

This blog serves as a vehicle for friends in other states to know how things are going with my cancer treatment, but I also want it to help others who might be new to breast cancer, to learn from my experiences and know they’re not alone in their journey through hell.

In following that mission, I want to address something that’s more of a social side effect of cancer/chemo. Sorry to those of you who like my more optimistic-toned posts, but it’s time I get this off my chest.

When I first was diagnosed and people around me learned of my “condition”, the news spread beyond those I told in person—it traveled to friends I rarely talk to, acquaintances, and everyone at work (including people who I’d never share my Netflix queue with, let alone my personal medical information with). But I guess that’s how it goes. News travels, good or bad.

So what do I do with those people? People who are suddenly nice to me but who were oblivious to me 3 months ago. Oh sure, I could take the high road and just reciprocate the attention (and I do), but it’s just so fake. It feels like they’re saying, “You didn’t matter at all to me before, but now that you’ve been struck with a serious illness, I’d like to be friendly so I don’t feel guilty if you die”. And conversely, I’m basically saying, “I didn’t like you before either but now that you’re all friendly and in my face, I can’t be an asshole and ignore you so instead let’s be fake friendly.” So interesting how cancer brings people together.

The other group of people who’ve come out of the woodwork and know more about my medical history than I’m comfortable with, are relatives I don’t keep in contact with. We all have those relatives that we’ve grown apart from who we used to see regularly as a kid (and maybe idolized even) but have now become crazy, right-wing, religious pushing, baby-centric, homophobic, deer hunting, animal chewers. Or, maybe it’s just mine. Whatever types your long-lost relatives are, I’m sure you can relate—they’re long-lost for a reason. And how do you deal with someone with whom you haven’t spoken or seen in years (and even then, the last time you did see them, it was the typical forced ‘I-know-nothing-about-you-so-let’s-talk-about-your-kids-and-the-weather’ conversation)?   

Again, I could appreciate their extended hand and allow their well-wishes and prayer promises to fill my heart (and then blog about how I real feel). But the reality is that not only does this seem fake to me—because neither of us has been there for the other in past life-changing celebratory or tragic times. Let alone just staying in contact and knowing anything real about one another. What happens after I’m cured of cancer (there’s my rainbow of optimism)—are we friends now? Do we over look the glaring differences in our social, religious, and moral values? It’s just not realistic, especially for me. I have amazing friends that I love; who are shepherds of the earth; activists for the animals; who have jobs where they help sick people, fight for human rights, shed blood, sweat and tears for animals in need everywhere; that I don’t see, talk to or write to nearly enough. Am I really going to keep a relationship going with someone I don’t respect and have nothing in common more than our family history?  

Call me cynical, close-minded or judgmental if you will. But this is me and one thing I’ve learned is to give my love and attention to those who fill me with happiness, rather than bring conflict and moral corruption. I choose to surround myself with people who love and respect me for who I am everyday and not just on cancer-diagnosis day.