Shh-WOO-woo, or, It’s Weird to Look at Your Insides

Started today by getting an echocardiogram at the Hospital adjacent to Dana Farber. This is an ultrasound of the heart, intended to assess heart function. Specifically, they’re interested in how well my heart is pumping blood. This is called (ahem) “ejection fraction,” or EF.

The concern is driven by my Herceptin infusions. In another example of how cancer treatment can negatively affect patient’s lives over the long term, research (here, here, and here, among other studies) has shown that Herceptin, aka trastuzumab, can cause loss of heart function. This isn’t an immediate effect, but given the multi-year use of Herceptin, the cumulative effects can be problematic for some people. As is often the case, however, the research on this isn’t crystal clear. There are many caveats about the conditions under which Herceptin might cause cardiac dysfunction, as well as the reversibility of this problem. The upshot is that it’s standard to do regular echocardiograms to keep an eye on any possible problems.

Back to the ejection fraction. Normal EF is 50-75%. Left Ventricle EF (LVEF) less than 50% is technically considered heart failure. When I had this done on May 8, my LVEF was a strong 72%, and today’s test will be used as a comparison to see if my treatment has negatively affected my heart.

Silver Linings Alert: A very nice difference between today’s echocardiogram and the one done on May 8 is that I no longer have all that abdominal pain. The process requires lying on your left side on a bed while the technician pokes and rolls a small ultrasound transducer that looks like an ink roller over your heart. This is probably no big deal for men (see image above), but for women, I can tell you it’s rather uncomfortable. Those pesky breasts. The tech pokes/rolls the ink roller around the chest, applying a good deal of pressure to try to get a good image of the heart beyond all that useless, dare I say traitorous, breast tissue. Anyway, back in May, it was difficult for me to lie on my back or side for any length of time without pain, which made this relatively simple procedure a little more difficult. Today I was able to lay there for nearly an hour without any problem.

It was fascinating to hear all the different sounds made by different parts of my heart. At one point I noticed a distinct shh-WOO-woo, shh-WOO-woo, shh-WOO-woo sound, though I don’t know where she was with the transducer at that point. It was at this point that I turned my head to the right to get a view of the monitor. And what an amazing view it was! (The soundcloud link below is not my echocardiogram, but you get the point. I was bummed to discover that this person’s heart doesn’t say shh-WOO-woo.)

 

I kept asking the technician questions, and she was happy to try to answer them, but as a non-native English speaker with a very strong accent, it was hard to understand much of what she said.

Image result for heart anatomy
Image: Texas Heart Institute

Still, I gathered that they pay special attention to the left ventricle because this is the real powerhouse of the heart, responsible for most of the pumping. The other heart chambers, she said, are more passive. She poked and rolled and made a big mess of my chest with all the lube they use to allow the pokey ultrasound transducer to “glide” more easily. There was not much gliding involved in this exercise, I can tell you. Then she instructed me to take short breaths – not too much! – to capture the heart filling and pumping. Too big a breath meant that the heart would expand beyond the view of the monitor window, making this a rather precise process. She went on to say that breathing is a very important exercise for good health. I feel like I’ve been inundated with instructions to meditate (and practice breathing) lately. It almost felt like she was a paid protestor to further this pro-breathing agenda.

The 2-D echocardiogram shows an image of the heart (or whatever the target organ or other tissue is) doing its thing, as well as the heartbeat, which is measured by electrodes that are stuck in several places around the chest and abdomen. Periodically she would turn on a feature that would show a color-coded image of blood flow through the various heart chambers, veins, and arteries. The image looks like a heat map, where red colors  mean more blood flow and blue colors mean less. At one point she held the transducer in the upper middle of my abdomen to get a look at the hepatic vein, flowing from liver to heart. The hepatic vein is quite large, and was easily visible to my eye on the monitor, but I was distracted by two pulsating cones (a terrible word to describe this, I’m sure, but that’s what they looked like) to the right, above the liver. It turns out that this was the bottom of my heart. Every time I get one of these windows into my body, I’m amazed at how close together everything is! I’ve heard many times that the heart muscle is about the size of a fist. Well, that’s a bigger fist than mine, apparently, since its lower extremities are far closer to my liver than I would have imagined. We’ve got a lot of stuff crammed in these bodies. No wonder things go wrong so often.

The technician also explained that the heart can experience scarring from breast radiation, in spite of best efforts by radiation oncologists and techs to avoid this. That reminded me of the, again, very precise, practice of breathing and holding my breath that was required during my breast radiation in 2015. They did imaging to figure out exactly how much I would need to inhale and how long I’d need to hold my breath to protect my heart during the radiation zaps. The duration of each radiation treatment was mostly a function of whether I was able to do the inhalation and breath-holding well the first time, or whether it took a few times to get it right. It’s interesting to see this all come full circle now. Oh, and by the way, “radiation therapy frequently augments the cardiotoxic effects of systemic cancer therapy.” Yippee!

No results yet, but Nurse M said this was good news. If there had been bad news, we would have heard today while I was getting the infusion.

Finally, I’ll note that this was treatment number 15 today. Wow. Time has flown. Three more chemo treatments to go, or so we hope. Another CT scan in early September, blood work, and the echocardiogram results will tell the story that informs Dr. M’s decision about whether I need to continue chemotherapy beyond September 7.

Side effects remain about the same. The neuropathy has gotten a little worse, but hasn’t spread beyond my fingertips and toes. The quality of the neuropathy has changed, with my fingertips feeling to me as though they’re calloused, even though they’re not. My nail beds no longer feel sore, but that’s because each of my fingertips feels more deeply numb. As in, deeper within my fingers. It’s hard to explain.

The diarrhea continues, and today DF gave me a prescription for Lomotil, a more powerful anti-diarrheal drug than Imodium. I’ve been using Imodium steadily, with mixed results. Nurse M explained the various strategies that patients deploy with the two drugs: some people decide to skip Imodium entirely and just use the Lomotil; others stagger their use of both. He concluded, “there’s no hard and fast rule for how to do this.”

Without missing a beat, Husband said, “the only rule is that it will come hard or fast.” Baahaahahahahaha!! I think this might be the title for the chapter devoted to pooping in my eventual book. ‘Cause you know there’s going to be a chapter about poop.

Shh-WOO-woo, or, It’s Weird to Look at Your Insides

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

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…

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