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…

Weird Things About Being Bald

In no particular order, and with the knowledge that I will likely edit this over time…

  • My hats are too big. (I had A LOT of hair)
  • I’ve not completely shaven my head, so my scalp feels like velcro
  • I can’t stop running my hands over my head
  • My shadow is a little scary
  • The simultaneous sensations of feeling my velcro head with my hand and feeling my cool hand on my scalp are totally bizarre
  • If I wrap a scarf around my head just so, I look like Professor Quirrell from Harry Potter and the Sorcerer’s Stone

  • Someone told me I looked like Natalie Portman when she shaved her head, which made up for the Professor Quirrell thing
  • I’m now susceptible to mosquito bites on my scalp
  • I started sleeping on a satin pillowcase to alleviate the velcro effect while I sleep. (BTW, I’ve learned that fashionable ladies do this to keep wrinkles at bay. You know how smushed up your face gets while you sleep. Warning: this can take you down a crazy Internet rabbit hole. Some people will go to very great lengths to avoid sleep wrinkles.)
  • There is an odd cooling sensation immediately after removing a scarf that’s been wrapped around my head for a while
  • I need to buy a wig!
  • I pay much more attention to random people’s hair–its color, texture, quantity, behavior. I think this might be worth a separate post…

Expert bald people: what am I missing?


Weird Things About Being Bald

Ripley, Reporting for Duty

We did it! I finally bit the bullet and decided to get rid of my hair yesterday. Husband captured the whole event for posterity and C did most of the shaving. And here I am.

Needless to say, this is pretty weird. But I’m not sad. I’ve actually found this entire process of cutting and shaving my hair pretty empowering, to be honest. I’ve always had long hair. Always. And I probably never would have had the nerve to cut my hair short without this physiological kick in the pants…much less SHAVE my head.

Turns out, I have a pretty decent head. No weird lumps, and my ears don’t stick out or make me look like an alien. Along the path to baldness yesterday, we stopped at Mohawk Boulevard, Kewpie Doll Terrace, and Ed Grimley Avenue. I have to admit that I really loved Mohawk Blvd. If I were in a different line of work I would seriously consider hanging out there for a while.

White walls.
Lovin’ the mohawk.
The Ed Grimley. Completely mental, don’t ya know?!
The Kewpie Doll. This one took some serious product.
The Kid?
Husband lent me his dreads for a few minutes.
The doting husband…who can’t stop touching my head.
Ripley, Reporting for Duty

Monumental Marker Matters


Posting from my phone at DF right now, so I can’t do an updated graph, but had to share the good news!




My liver tumor markers continue to plummet.

The trajectory and approximate rate of my liver tumor markers’ decline.

CA 27/29 was the one that started at 4272 on May 8. This went down to 1245 on May 31. Today it was 212. (!!!!)

CEA was at 1218 on May 8, then 702 on the 31st. Today it’s at 332.9.

Let’s hear it for modern medicine!

THP day going very well so far. No benadryl today, though I’ve been advised to try that as a sleep aid. I also got a script for Ativan today. This is an anti-anxiety med that I’ve used before to help with sleeping. Between these two, I’m looking forward to catching lots of z’s.

Another milestone: today is my third THP treatment, but the first time they sped up delivery of all 3 drugs and completely eliminated Benadryl from this multi-drug treatment. It’s gone like clockwork, which means we can count on a more compressed “long” day going by forward. (That is, 5 hours at DF instead of 6 or 7.)

Today marks the start of my third cycle, which will end July 13. I’ll likely get a CT scan during my 4th 3-week cycle to see how my liver looks. This, with my blood work, will determine whether I get a 5th cycle or not.

And, with some luck, we might get out of here by 3pm today, which means we’d miss the worst traffic. Fingers crossed!

Monumental Marker Matters

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

Oh, My Head

It hurts. Not from a headache or because I knocked it against a short overhang as I stood up.

Not like a hangover, thank god.

It’s more like my hair hurts. Or, rather, my hair follicles hurt. If you’ve ever worn a hat too long or, if you have long hair, left a ponytail in for a long time, you might know what I mean.

Over the past few days I’ve started wearing head scarves, mostly to limit the piles of hair that accumulate around me like I’m Pigpen from Peanuts, just with hair instead of dirt.

I have two lovely head scarves sent by my friend C. One is a purple batik, the other a soft, rayon-y confection that I suspect will feel really good on my bald head when I get there.

By happenstance, C’s package arrived on the same day as a package of head wear I had ordered from the same company. I highly recommend this company, by the way: The packages arrived with these nice little magnets and pink ribbons. 

So now I have the two scarves from C, a bright red one I bought, and two “snoods,” a decidedly funny name for a soft little slouchy cotton hat. Instead of screaming “I have cancer!” these snoods let off more of an “I’m trying to look hip!” vibe. Small improvement, but I’ll take it.

Another dear C friend brought me to treatment last week and we decided to go a little early so we could check out the wigs at DF’s little store. They’re still between wig fitters, but we looked at their small selection of costume wigs. C bought one of them for me. Which one do you think we went with?

If you guessed pink, you’re right! The long one is too reminiscent of my real hair and the orange one made me look like Wendy of the burger chain. But the pink one! What fun!! I’m excited to wear that little cutie. But probably not until I finish losing this hair, b/c I don’t want to have anything on my head right now if I’m can help it. Those damn follicles.

Oh, My Head