Family History

I’ve been meaning to write about this for a while, but I knew it would be a hard post to write. Today is a cool, rainy day…perfect for some quiet time and reflection.

I was also inspired to write this today because I found a box with mementos from 2011, the year of my first cancer diagnosis, the year my life changed in so many unplanned and unimaginable ways. I probably received more than 100 cards from family, friends and colleagues that year as I recovered from the onslaught of treatment for uterine leiomyosarcoma. I will never forget the sense of astonishment that so many people were thinking of me and would take time out of their days to buy a card and write beautiful, heartfelt notes to me. Sometimes those notes were very short (“Thinking of you”), sometimes quite long (“I had cancer, I know what it’s like, life sucks but you’ll get through it, etc.”). Some of them were matter of fact, some of them shared the fear of uncertainty, all of them sent love, prayers, and/or hugs. I got so many cards that I made a collage of them before going in for my big surgery (hysterectomy + temporary ileostomy) in October 2011. I knew I’d be in the hospital for a while to recover, and I wanted to be able to see that collage. I looked at it every day and kept it for several years.

I’m a packrat of the sentimental sort. I tend to hold on to cards, photos, and other mementos that are especially meaningful to me, or were at the time I received them. This means I have a variety of boxes containing these capsules of love and friendship. In short, within the context of this blog, this habit means I’ve held on to some of the cards and notes I received in the course of my journey to Cancerland (btw, see this great recent commentary about one woman’s brief journey to Cancerland). I’ve done my best to whittle this collection down to the mementos that affected me most deeply. Interestingly, the cards that made the cut came from a wide range of people in my life: some very close to me, others who were really acquaintances, but wrote something powerful.

Anyway, in my typical fashion, this is all a lead up to today’s post, which is about my family history of cancer. Within the box of 2011 cancer mementos, I found a card from my Great Aunt B. Aunt B. just died last fall at the age of 95, the last of her six siblings to slip the surly bonds of earth. IMG-8169

Aunt B. wrote,

“It will be a rough time for you these next many weeks. Your Aunt A. in early 1964 would travel Monday morning by bus from Beaver, Utah to Salt Lake City for her daily C. treatments, staying at a motel, then returning home to Beaver by bus after Friday’s treatment. I know you will make it fine (after all you have that [family] spirit in you) and we wish you well.”

The thought of getting cancer treatment in 1964 is horrifying. Cancer treatment in those days was generally limited to surgery and  radiation. According to a 2008 history of cancer chemotherapy, “surgery and radiotherapy dominated the field of cancer therapy into the 1960s until it became clear that cure rates after ever more radical local treatments had plateaued at about 33% due to the presence of heretofore-unappreciated micrometastases.” Although chemotherapy research originated in the early 1900s (!), the field was very limited until the U.S. National Cancer Institute was established in 1955, ultimately leading to (among other things) the development of the clinical trial system we know today. More on that in a minute.

Those of you interested in reading more about the history of cancer treatment can see an interesting timeline at the National Cancer Institute.

There also was a distinct lack of nuance in treatment at that time. Cancer generally wasn’t caught early, but even if it was, the prevailing wisdom was to cut out a large swath of tissue to confine the cancer. So an early stage breast cancer diagnosis, like the one I had in 2015, would have led to a radical mastectomy (the “radical” part references the removal of lymph nodes as well as breast tissue), not a lumpectomy, or “breast conserving surgery,” as lumpectomies are now called. Based on the stories I’ve heard from older breast cancer survivors, the “take it all” approached persisted for breast cancer diagnoses at least through the 1980s.

Radiation, too, was still very much an evolving tool in the 1960s. Researchers were still figuring out how patients would respond to different doses of radiation, and trying to figure out how to minimize the significant side effects of their approaches.

I don’t know any details about my Aunt A’s breast cancer or her treatment. Regardless, I’m quite sure breast cancer treatment was a hard row to hoe in 1964.

But still probably not as hard as my Aunt Georgii. I mentioned her in a previous post, when I remembered one of my favorite stories about her making her first cherry pie…out of maraschino cherries! Blech.

G’s cancer story deserves its own book (and, in part, she has one). She really went to hell and back. As much as I resist the “warrior” narrative that is pushed on cancer survivors, my Aunt G. was a fighter of the highest order.

G. was diagnosed with advanced stage 4 breast cancer in the 1980s at the age of 41. I don’t know the specific type of breast cancer, but it was incredibly aggressive. She started with the (then) typical steps for treatment: mastectomy, chemotherapy, radiation. She had multiple rounds of radiation, both external beam radiation (like I had, but probably much less focused) and brachytherapy, in which small radioactive “seeds” are actually implanted in the body for a period of time.

She also did chemotherapy. Fifteen rounds of chemotherapy, each of which was several months in duration. My mom, Aunt G’s sister, told me that G. got to the point where she could plan the timing of her reactions to the chemotherapy perfectly: after leaving treatment, her vomiting would stop for just long enough for her to get to a certain Burger King. She would pull over in their parking lot and vomit for about 15 minutes, then get back on the road to get home.

But none of these treatments worked, which led her to trying experimental treatments such as hyperthermia (application of extreme heat to kill cancer cells) and cryotherapy (application of extreme cold). Finally, in a last-ditch effort, she agreed to serve in a clinical trial for a treatment called high-dose chemotherapy and bone marrow transplant (HDC/BMT). Georgii was among the early trial groups for this risky and controversial treatment.

The idea behind HDC/BMT was well described by Siddhartha Mukherjee in his book, The Emperor of All Maladies:

“…a procedure known as autologous bone marrow transplant, or ABMT,…roared into national and international prominence in the mid-1980s. ABMT was based on an audacious conjecture. Ever since high-dose, multi drug regiments had succeeded in curing acute leukemia and Hodgkin’s disease in the 1960s, chemotherapists had wondered whether solid tumors, such as breast or lung cancer, had remained recalcitrant to chemotherapeutic obliteration simply because the bludgeon of drugs used was not powerful enough. What if, some fantasized, one could tip the human body even closer to the brink of death with even higher doses of cytotoxic drugs? Might it be dragged back from that near-lethal brink, leaving cancer behind? What if one could double, or even quadruple, the dosage of drugs?

The dose limit of a drug is set by its toxicity to normal cells. For most chemotherapy drugs, that dose limit rested principally on a single organ — the bone marrow, whose whirring cellular mill…was so exquisitely sensitive to most drugs that patients administered drugs to kill cancer were left with no normal blood-forming cells. For a while, then, it was the bone marrow’s sensitivity to [chemotherapy] drugs that had defined the outer horizon of chemotherapeutic dosage. The bone marrow represented the frontier of toxicity…”

In autologous bone marrow transplants, “the patient’s own marrow was harvested, frozen, and transplanted back into…her body. The principal purpose was not to replace diseased marrow…but to maximize chemotherapy dosage. A patient’s own marrow, containing blood-forming cells, was harvested and frozen. Then blisteringly high levels of drugs were administered to kill cancer. The frozen marrow was thawed and implanted. Since the frozen marrow cells were spared the brunt of chemotherapy, transplantation allowed doctors, theoretically at least, to push doses of chemo to their ultimate end.”

As you might imagine, this process wreaked havoc on the patients. It wreaked havoc on my Aunt G. She was in strict isolation for 9 weeks then stepped down gradually.  At the HDC/BMT treatment mid-point she asked to go home but she couldn’t, because she would have died quickly out of the unit.  She literally had zero immune system.

Ultimately, after some ten years of trials, researchers confirmed that outcomes were no better with HDC/BMT than with conventional approaches to chemotherapy. And unlike the conventional approaches, the treatment itself was more likely to kill you. Treatment-related mortality from HDC/BMT was 3-15%.

I was in high school when Aunt G. was going through this process, and while I knew she had breast cancer and knew she was getting treatment at Duke, I had no appreciation or understanding of what was really happening. Last year, when we found out about my liver metastases, my mom told me this story in detail. Mom said that G’s suffering was indescribable during the last 8.5 months of her life.  In spite of that, G. said she would have done it again because…who knows? Maybe she could have been one of the (few) people this horrific treatment helped.

We stand on the shoulders of giants in so many ways in this world. When you find yourself consumed by a life-threatening disease, or even a chronic illness, it is easy to fall into the habit of identifying the medical professionals as the giants. It’s important to remember that there are countless patients who literally gave their lives to medical science to get us to where we are today. My Aunt Georgii was one of them, and I could not be more proud or more grateful.

Aunt Georgii

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Family History

Butterfingers!

In the past few days I have:

  • Slopped a wet tea bag across my chest when my uselesss fingers mistakenly picked up the string from the edge of my mug and my brain couldn’t react fast enough to prevent the mess,
  • Dropped a bagel on the couch, slathering my pants, the couch, and my date book in chive cream cheese,
  • Nearly broke my blender while trying to wash it,
  • Pawed at a magazine five times before successfully turning the page,
  • Struggled to get my fingers around the pull cord on a small table lamp,
  • …something else that I can’t remember.

You get the point. It really does feel like I’m wearing oversized rubber dish gloves all the time. This is infuriating!


On the plus side, gabapentin is awesome. Apart from this stupid cold I picked up yesterday, which had me up coughing and honking my nose most of last night, at least my pharmacopeia is finally getting dialed in to help me sleep.

Butterfingers!

Cancer Is Inconvenient

That potent bit of wisdom came from my friend, C. She coined this when a very close friend of ours was going through cancer treatment a few years back. I love this line because it cuts to the heart of the matter. I told C that I’m adding this to the running list of titles for my (eventual) book about all this shit.

Today was one of those days when cancer’s inconvenience punched me in the face. Yes, I mixed my metaphors. Sue me.

Husband and I headed up to DF today for a full THP (Taxol, Herceptin, Perjeta) treatment day. This was my 13th (!) chemo treatment, and the start of my 5th cycle. Each “cycle” is 3 weeks for me, starting with a THP day and followed by 2 weeks where I just receive Taxol. This was also the first time we’ve seen Dr. M (instead of his PA) in quite a while, about 9 weeks. The PA is great, but she’s not authorized to make any grand pronouncements about my care, so we were eager to see Dr. M again today. Specifically, we were eager to hear him say that today and the next two weeks would constitute the end of my chemotherapy.

You may recall that when I was rushed into chemo treatment in May, Dr. M told us that he expected me to receive 4-5 cycles of Taxol. We learned sometime thereafter that I would continue to receive the antibody treatments (Perjeta and Herceptin) every three weeks thereafter, forever. I’ve since learned that the antibody-only infusions will be pretty streamlined compared to the chemo treatments: I won’t need bloodwork every time and I won’t meet with my doc/PA every time. This means my time at DF for the antibody infusions should be 1.5-3 hours, with the longer end of the spectrum accounting for the occasional delays that happen when the pharmacy gets backed up. That big time reduction will make this much easier to fit into a reasonable schedule. Right now, even on days when I only receive Taxol, my treatments are usually a minimum of 4 hours at DF, counting bloodwork, wait times, etc.

But the important part of that previous paragraph is that we were expecting a maximum of 5 cycles, or 15 weeks, of chemotherapy.

Yesterday I had a repeat CT scan of my chest, abdomen, and pelvis to see how my liver looks, and how the liver tumors responded to treatment. My numbers from bloodwork have been excellent, steadily declining, and I’ve been pain free since I started chemo.

Bloodwork_8.2.17

All signs pointed to a great response. My APT, AST, and ALT values are all normal and have been since early June. My CEA and CA 27-29 (the tumor markers) are still beyond the normal range, but they’ve decreased by 99% and 96%, respectively, between May 8 and August 2. Pretty darn good. But the scan would give us a critical piece of evidence. Pictures don’t lie. (Unless, perhaps, you ask Donald Trump.)

CT Scan Comparison_8.2.17

The above images show a few things. First, let me orient you. The “top” of the image is the front of my body, while the “bottom” of each image is my back. My liver takes up most of the space in the images. You can see my spine as the sort of Casper-the-ghost-shaped white thing on the left image and the nuclear explosion-looking thing on the right. The white outline below my body is the scanning table.

The left image is from April 26, the right is from August 2. The red circles show liver tumors. The blue circle shows my stomach, which is fine, I just wanted to indicate what that white thing is. You can also see my (uncircled) stomach in the April image.

On April 26, you can see at least 4 liver tumors in this particular “slice” from the CT scan: two very large ones and two medium-sized ones in a single circle on the lower left. They’re actually a little smaller than they appear on this image, because Dr. M circled them with a pen today while showing us this print out.

Here’s the GREAT news: All the tumors have shrunk, and of course they’ve done so in multiple dimensions, so Dr. M wasn’t able to find an image that simultaneously showed the two large tumors and the two medium tumors in the same frame from yesterday’s CT scan. The image on the right shows one of the large tumors and the two medium tumors. It’s clear that both the large tumor and the two smaller ones are significantly smaller. To put this in context, one of the largest tumors I had as of the April 26 was 57 x 52 millimeters, or 5.7 x 5.2 centimeters. That’s 2.25 x 2 inches!!! It’s hard to believe that I had something that big, plus “innumerable” other tumors in my liver at once when all this started. No wonder I was in such pain. Now, that tumor is down to 16 x 18 millimeters, or 1.6 x 1.8 cm. That’s still more than half an inch in both dimensions, but it’s a massive reduction in size.

Here’s the lousy news: the continued presence of these tumors means that I need more chemo (I don’t yet know how many are still present because we didn’t get the final radiology report and my chemobrain forgot to ask this question of Dr. M). More than two more weeks worth of chemo, for sure. Dr. M said it “might be just 2 more cycles” or 5 more weeks of chemo to get rid of these damn things. I couldn’t help but notice the multiple caveats in his statement.

I’ll continue at the current dose of Taxol, unless my neuropathy gets worse, in which case they might decrease the concentration in the 6th cycle. (The neuropathy has continued to spread and get a little worse, though it’s not that bad. I am having more trouble typing, I’m noticing, and occasionally I get weird electric zaps in my left hand, but I’m still managing just fine.)

After completing these two cycles I’ll get another CT scan to check on the state of the tumors. It’s conceivable that they would want to give me more chemo after that if the tumors aren’t gone. At a minimum, though, I’ll get a 1-2 week break from chemo after September 7 to give my body time to recover a little.

In the meantime, Dr. M order another echocardiogram to be sure that my heart is withstanding all of the chemo alright. Taxol, especially, is hard on the ticker, so it’s important to check. For the sake of my readers, I’ll note that I’ve not had any symptoms that would indicate heart trouble.

Also, Dr. M put me back on the steroid pill I was told to stop taking about 6 weeks ago by his PA. He exasperatedly told us that there are two schools of thought within the DF Breast Clinic about continued use of steroids during chemo. One group thinks it’s always best to eliminate steroids ASAP once it’s clear that the patient doesn’t need them to quell any reactions. Another group – and this is clearly the one Dr. M belongs to – prefers to keep using the steroid once/week to ward off fluid retention, or edema. This is a problem that is not uncommon among patients getting Taxol, and it can lead to serious inconveniences that drugs don’t help. Dr. M said he’s had patients who needed 3 months to fit in their shoes again when edema got out of control. Ok, then. Back to the dexamethasone. No problem!

He also observed that I had a little bit of a rash on my face. Again, this is very common, and I’m lucky that this only started for me within the last few days. He prescribed a cream and told me to stop using moisturizer until the rash subsides. Figures. All the docs and nurses have been commenting for weeks on how “great” my skin looks.

Here’s a recent paper summarizing many of the side effects of Taxol, if you’re interested.

Finally, we talked about my chemobrain problems. This is definitely the side effect that is making me most crazy. There are apparently two hypotheses now about which patients will suffer chemobrain most acutely: one hypothesis argues that very “high functioning” people experience chemobrain more intensely and the other argues that people with a high level of anxiety suffer chemobrain more intensely. There’s really not much to be done about this, although Nurse M suggested I try acupuncture and a guided meditation app. (I will!) But Dr. M offered the most important piece of advice on this, I think, which is that I need to take more time to rest my brain when I feel the need.

I’ve been getting a little better about taking this time, but it’s not my nature to rest, so this is a hard change for me. It’s clear, though, that I need to make the time to chill the F out more often. Reclaiming Fridays for myself is a good start, since I let work creep back in over the summer on this “day of rest” I had assigned myself at the start of chemo. But I’ll also try Nurse M’s meditation app for a quick 5-15 minute rest during the day. And sure, I’ll even give acupuncture a try. Nurse M insisted that I do it a few times before giving up. Looks like I have something to schedule for Friday. 🙂

So, there you have it. This is definitely not the news we wanted or were expecting today. I had been counting down the days until I’d be done with chemo, and it looks like I’ll need to count an extra 21 of them now.

Finally, I have to note that it seems my super power is having an extraordinary tolerance for cancer treatment. I made it through 25 (or 32?) blasts of pelvic radiation and an ileostomy in 2011, another 25 blasts of breast radiation in 2015, and now 13 weeks and counting of chemo. The pelvic radiation and ileostomy knocked me on my ass, admittedly, but I made it for the full prescribed treatment in both cases. In spite of the diarrhea and rash and fatigue and hair loss and weird nails and neuropathy and most of all that fucking inconvenient chemobrain I’m experiencing now, I’m doing really well at this point…which is why they feel comfortable giving me 5 more weeks of this shit.

Years ago, my friend P and her brother famously started an ongoing conversation among our group of grad school friends about our respective mediocre super powers. One of P’s mediocre super powers is knowing every lyric to practically every song from the 1980s and 1990s. She has many other serious super powers, by the way, as does nearly everyone I know. But it’s fun to talk about your mediocre super powers. I guess I’d say that one of mine is the ability to smell decomposing organic matter a week before anyone else with normal olfactory abilities.

But now I think it’s fair to say this ability to withstand chemo #likeaboss is more than a mediocre super power. Even though it’s all really inconvenient.

When I told my friend K about this apparent super power today, she cracked up and suggested a sort of chemo super hero doll along these lines, “IV drip and all.” So, I’ll leave you on a humorous note by sharing my ABSOLUTELY HORRIBLE drawing of Chemotherapy Boss. (I originally called her Chemotherapy Girl, but screw that. Let’s empower this lady.) Of course, like any doll, you have to work out the accessory line to make the real money.

xo

 

Cancer Is Inconvenient

Seriously Snarky

Consider that headline a warning.

My friend J took me to chemo last week and discovered that the DF gift shop’s front display was a bunch of useless stuff celebrating beach life. First off, yes, even cancer centers have gift shops. Second, why on Earth are they selling beach life tsotchkes?

Sure, it’s late July. I suppose this is the time when normal gift shops are pushing these items hard, and even starting to mark them down before the seasonal market floats away like a summer breeze.

But it struck both of us as a little off for a cancer center gift shop. So we decided to edit the cute sayings on these signs and beer cozies to make them more subject appropriate.

I offer you the original products and our reworked versions.

img_7198-2.jpg
Best weekend ever…Wasn’t admitted

Best weekend ever…No diarrhea!

Or, instead of “good times and tan lines,” how about “Fluorescent lights and IV bags”?


Heaven is a little closer…when you have cancer

If I can’t wear a surgical mask, I’m not going

Life needs less chemotherapy and radiation

Herceptin Sweet Herceptin

And my favorite:


A good day at the cancer center ends with…leaving

Thanks for the giggles, J.

***

In other news, that was treatment #12. Only 3 to go!

My numbers continue to decline, meaning that I’m in the normal range for most categories. The liver tumor markers are still a little bit elevated, but they’ve come down so much that we can only be thrilled by these numbers.

The chemotherapy induced peripheral neuropathy has started to become more consistent on my left thumb and index finger. It’s not bad at this point, and is generally isolated to my fingertips and toes. I have numbness is most of my finger tips at this point, on both hands, and occasional tingly sensations in my fingertips or a sort of electrical zap through my (left) hand. Sometimes the numbness in these fingers makes it a little difficult to do normal things like wash dishes. It’s especially hard to maintain a grip on wet dishes, but I’ve not yet broken anything. This particular side effect can get very painful and debilitating for some people, and it’s often the reason people stop their chemotherapy treatments early. With three weeks to go, I’m hoping I’ll be done with chemo before this gets too bad.

Nurse M told me recently that neuropathy symptoms typically subside fairly soon after chemo treatments stop. Fingers crossed.

Seriously Snarky

Poopy Hell Days and Random Acts of Kindness

Today is one of those days when cancer sucks.

I just had my eleventh chemo treatment this week, which went fine, as I reported yesterday. I am tired at the end of treatment days, but not in a world-weary sort of way, just because I’ve been wrapped up with cancer treatment for a roughly 10-12 hour period, between travel and actual Dana Farber activities. In short, I wasn’t especially tired yesterday, maybe just a little bit more than average after-treatment tired.

I decided last night that I would go to the beach today. It’s been hot and humid the past couple of weeks, and today seemed like the perfect day for me to finally get in some private beach time. I slept in, had breakfast, then packed up my beach bag to include all the things I might want: my journal and a pen, my tunes, a book, a banana smoothie, etc. It takes a while to adequately prep a beach bag, in my experience. I was also stalling a bit to be sure I wouldn’t have any unexpected and unstoppable toilet needs before heading to the beach.

Good thing I waited, because this turned out to be one of those endless diarrhea days. I took my initial two Immodium pills and then a third when poopy hell struck again. The third pill is generally the charm, and puts the kibosh on further explosions. I finally seemed to have gotten through this GI attack, so I bid Husband and Dog adieu and headed to a beach near work, thinking I could have access to a private bathroom there should I need it. (The benefits of living near the ocean!) Halfway there, I realized I needed to get to a bathroom ASAP. I also realized that I was not going to the beach today. So I turned around, came home, and ran to the bathroom just in time to avoid further ruining my day.

This wasn’t the end of the world, of course. I sat out on our lawn in a beach chair for a while, but it’s just not the same. I wanted sand between my toes and a swim in the ocean, dammit.

This is what cancer does. It sneaks up on you and ruins your day. Even if you’re trying to head that bitch off at the pass, it still manages to sneak up on you, stick it’s nasty little hyper-dividing tongue out at you, and laugh at your well laid plans.

On the other hand…

Last week I had one of those run-ins with unimaginable kindness that seem uniquely, or at least disproportionately, associated with life as a cancer patient.

I’ve been feeling very anti-social lately because of chemobrain. I find it hard to hang out with many people at once because my brain gets easily overwhelmed by the activity, or sound, or attention, or some combination thereof. Although I truly enjoy myself when I have one or two visitors, planning for the visits is also a bit overwhelming (even though it requires practically no effort on my part). As a result, I’ve not seen many people outside of work lately.

Going to the grocery store or other similarly anonymous places allows me to be around people without having to interact with them. I find this comforting, which is odd for a typically social person like me. I both miss hanging out with people and lack the desire to do so. It’s a frustrating mix.

Last weekend I went to a store where I can walk around and peruse clothes, shoes, and home goods. I found some clothes to try on and took them to the fitting rooms. I had to laugh at a couple of the shirts I chose. These were both black, long-sleeved shirts that looked very elegant on the hanger. I thought they might make good work clothes or night-out clothes (for when I actually have nights out again). Image result for science fiction women baldBut when I tried them on, the juxtaposition of these edgy, black shirts with my bald head was a little too jarring. I felt like a character straight out of a science fiction epic.

Hello, Captain Zarniff. It’s Ular Jaro, back from the seventh moon of Syra 11.

One of the shirts had a back zipper that I couldn’t manage on my own, so I did what women always do in this situation: I went into the shared fitting room space to seek out another shopper who could zip me up. Without thinking about it, I walked my bald head right out into the breach.

Luckily, there was a woman trying on a dress by the full length mirror, and she was happy to oblige. I complimented her dress and she unzipped me again after I’d had a chance to view myself in the big mirror (horrifying!). She was kind enough not to comment. We then went back to our respective fitting rooms.

A few minutes later, when I’d finished trying things on, I opened my stall door just as she did, and it happened that she was in the stall across from mine. She had on a different dress and asked my opinion. We chatted for a moment about the various pros and cons of each dress. Then, hesitating, she asked if I was in treatment. I said yes. She explained that she had had breast cancer some 20 years ago, and is completely healthy. She looked great: in her 60s, she was fit and beautiful with a long mane of healthy hair. (I notice hair a lot more these days.)

She then asked, again, very tentatively, if I would like her to pray for me. “I’m on the prayer team at my church,” she explained. I accepted her kind offer. Although I’m not the least bit religious, I will happily receive the love and good thoughts of any person who wishes to share them, via whatever process they choose.

Here came the weird part. She said, “Ok, then come on in to my fitting room.”

https://giphy.com/embed/glwlvYIRPivXW

via GIPHY

She didn’t seem like someone who would try to stab me with a pen knife, so I obliged. Don’t get me wrong, this felt exceedingly odd. But…she seemed completely sincere and strange things can happen when you tell people you have cancer.

She mostly closed the stall door, leaving it open just a crack, and then explained, about a foot away from me in this tiny fluorescent lit space, that many people had prayed for her when she had cancer, and she believes it made all the difference for her. She was never sick during treatment, she didn’t lose her hair, and she’s been healthy for more than twenty years. She was convinced that prayer saved her, and she wanted to extend the favor. She said, “I don’t know if you’re religious,” as part of her explanation, to which I responded, “No, I’m not. Not in the least.” Still, she kept going, but in a very respectful way.

She was halting in her approach, presumably because this was an awkward encounter and she was trying to make it as comfortable as possible. She put her hands on my shoulders, bowed her head, and began to pray. It went something like this:

“Lord, please watch over this woman.” She paused. “Protect her…our sister…” and then she looked up at me and asked, “what’s your name?”

“Sunshine,” I answered. She smiled, quickly, and then bowed her head again.

“…our sister, Sunshine, and keep her well…and let her get through this treatment without pain or sickness…”

She went on in this way, but to be honest, I didn’t hear much of it. I was completely overwhelmed by the pure intensity of what this stranger was offering me.

She continued, “…in Jesus’ name. Amen.”

As she finished, I was sobbing. She didn’t seem to have a tear in her eye. She smiled and wished me the best. I thanked her, still in a haze, wiping my eyes, and left the fitting room.

I didn’t “feel the hand of God” in this interaction or anything like that. I didn’t experience any tingly feelings or a wave of warmth. What I felt was the love of a fellow human who chose to share a random act of kindness with me. THAT is my religion.

And that is the kind of crazy thing that (mostly) balances out the bad days.

Image result for wish you were here beach

Poopy Hell Days and Random Acts of Kindness

The Complex, Precarious Line…

…between fine and horrible.

 

Image result for precarious balance
Image: Amjad Rasmi

This great summation of living with cancer came from a recent visit with my survivorship clinic therapist, Dr. B.

 

Hard stop.

Let’s take a moment to think about what a survivorship clinic is. Obviously, this is a way to help cancer survivors and their families deal with the many physical and emotional outcomes of cancer treatment. But, increasingly, as more people (like me) become chronic cancer patients rather than dealing with a single acute case, the issue of survivorship has become a challenging problem. And it’s a problem that requires viewing from many perspectives.

In 2012, the American Cancer Society estimated there would be 18 million Americans with a history of cancer by 2022. I’m sure that number has increased significantly over the past 5 years.

Let’s start with the patient’s perspective. As someone who has been categorized as a survivor for the past 5 years or so, I can tell you (and I have) that the perspective shifts mightily when you must confront cancer as a chronic condition. Look, any person who’s ever had cancer or lived with someone with cancer will tell you that the fear of recurrence is omnipresent, even though it may recede to the cobwebby portions of your brain for periods of time. There’s even an abbreviation for this in the literature: FoR. But it’s not just the fear of recurrence. There is also the hard reality  of facing ongoing cancer care, in one form or another, for the rest of your natural born life. Together, these fears and reality checks make the world look a little different.

Image result for beautiful old woman with long silver hair
You know, like her. Maybe without the statement necklace.

Now a darker shadow looms over the question of whether it might be possible to ever have a family. You find yourself wondering if you’ll be able to see your nieces and nephews (biological and otherwise) graduate from college or get married or save the world. You worry about how this might affect your ability to travel or consume alcohol or just live your normal life. Whatever that was. You even wonder if you’ll be able to reach that end point you’ve long imagined: “when I’m an old woman I shall have long silver hair that cascades beautifully and in a not-unruly manner over my surprisingly attractive old lady shoulders.”

And then there is the patient’s spouse, caregiver, and/or family. These are the people who help the patient deal with the day to day realities of “surviving.” And who, in turn, have much surviving to do themselves. Surviving the constant trips to treatment or the hospital or to pick up medical supplies. Surviving their own versions of the omnipresent fears. Surviving their own worries or guilt about what prompted that cancer in the first place. Figuring out how to live a life that is rich and satisfying while managing physical and emotional baggage that can totally change relationships, for better and worse.

The doctors, meanwhile, are mostly trained to treat a specific physiological problem. But chronic cancer, like other chronic diseases, engages more than just a specific affected organ. It affects your mind, in the ways described above and countless others. State of the art cancer care is highly integrative in its approach for this very reason. But the medical system is still in the early stages of figuring out how best to care for chronic cancer patients. Treatment advances mean that some cancer patients (mostly those “lucky” enough to have common types of cancer like breast and prostate) can live for decades, occasionally having to “intensify” their treatment as Dr. M told me, but then enjoying long periods of “deintensified” treatment.

I’ve been surprised by how many oncologists have said to me, “well, we hope there might be a breakthrough/cure in the future that will end this as a chronic condition.” Assuming this optimism is based on their medical knowledge and not just blind faith, it’s great to hear their hopeful words. This is still a fairly new optimism, though.

And then, finally, there is the perspective of the broader medical establishment. As treatments improve, this means more people will live with cancer, be in remission from cancer, or even be cured of cancer (but still suffer its aftermath) for decades. This poses a huge range of questions and potential challenges for an already overburdened healthcare system.

The Centers for Disease Control even developed a National Action Plan for cancer survivorship in an effort to frame it as a national public health priority. They identified “four core public health domains: surveillance and applied research; communication, education, and training; programs, policies, and infrastructure; and access to quality care and services.”

Aging cancer survivors not only have the emotional and physical baggage of their treatment(s) to deal with, they also will develop all the normal pains and problems that come with age: hypertension, cardiovascular disease, etc. And the icing on this not-so-delicious cake is that cancer survivors may even develop additional primary cancers from their exposure to radiation or chemotherapy. (See this paper for many references on these previous points.)

Note that I have not included the insurance perspective in this. Given the outrageous shenanigans going on in the US House and Senate right now related to health insurance, I don’t really have the patience to dive into this variable of the survivorship equation sufficiently.

I will say this: any approach to health insurance that doesn’t cover pre-existing conditions, chemotherapy drugs, mental health, lab services (we cancer patients get a lot of blood tests), or that slashes Medicaid or places lifetime limits on coverage, is a non-starter for your average cancer survivor. In fact, it might be more accurate to say that the absence of those types of coverage (all of which have been under consideration at one point in the House and/or Senate bills) is a death sentence for cancer patients and survivors.

So, survivorship is, indeed, a complex and precarious line between fine and horrible.

 

The Complex, Precarious Line…

Feeling Ssssslllllooooooooowwwwww

Today is gray and humid in southern Rhode Island.

The space immediately surrounding me is quiet and slow, notwithstanding the steady weekend stream of cars going past our house.

This is one of those days I’m (regretfully) becoming accustomed to, when I don’t stray far from the couch because I’m just flat out tired. The best description of my status today is slow like honey and heavy with mood.

This is not normal for me. I’m the person that uses every minute of the weekend to get shit done. Laundry, cleaning, catching up on some work stuff I couldn’t get done during the week. You know how it goes. In spite of all the recommendations for bingeworthy tv from friends, it’s hard to make myself watch tv during daylight hours….it just feels wrong. (Although I admit I don’t have this same repulsion about using my computer, as evidenced by this post.)

Other than having a few slow days here and there, though, I’m doing remarkably well. Plus, my liver markers are all going in the right direction, showing a clear response to treatment. (Check out those lovely liver tumor markers, CEA and CA 27-29.)

It’s almost funny sometimes, actually. Often, folks who know what’s happening expect me to look sick. But I don’t, for the most part. Yes, I’m losing my hair like crazy, but you can’t really tell. I still have TONS of hair. More on this in a moment.  Sure, my GI system is in a constant state of disturbance that makes me wish I owned stock in Immodium and Georgia-Pacific. Alright, foods are starting to taste like cardboard. And, of course, I get very easily tired. But I’m not experiencing the worst side effects I had feared, and I don’t “look sick.”**

Now, about all that hair.

In spite of my disproportionate number of genetic mutations, I am blessed with good hair, and lots of it. This is great when I go to the hairdresser and they compliment me, or when I need to use my hair to regulate my temperature on cold days. But as it turns out, having a lot of hair can be pretty annoying when you start losing it. And losing it. And losing it.

The latest indignity is the fact that little hairs keep wafting into my cereal bowl as I eat my breakfast. I think we can all agree that cereal should be a hair-free zone.

This is all to say that I think I’m ready to take the nuclear option and shave my head. Stay tuned.

I’m going to go full on Ripley, which means I might put a trash can on my head, throw some cardboard boxes around my arms and legs, and walk around saying this ( to cancer, in which I am “her”):

**As an aside, it’s worth noting that the whole “you don’t look sick” thing is a big can of worms for a lot of people who suffer chronic illnesses. For now, I’ll note only that sometimes this kindhearted comment can be very frustrating for truly sick people. It’s complicated, and different for everyone, but this perspective might be enlightening.

Feeling Ssssslllllooooooooowwwwww