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

Hair UPdate

Because it’s been, what, a whole month since I posted about my hair?

Just thought you should know that I have some serious hair at this point. That shit has grown back with a curly vengeance.

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And those curls have a name, dear reader: chemo curls.

It’s common knowledge that many people grow curly hair after chemo. A Google search of the term brings up 178,000 results. But I could never have imagined just how curly my hair would become. After all these years, I have real empathy for my curly-haired friends’ endless search for the right product.

It’s heartening, I suppose, to see that many other people struggle to figure out what to do with their chemo curls, too. There are gobs of online forums about chemo curls, and even a good number of YouTube videos offering coaching on how to manage your Shirley Temple look. Even though I’m not a big fan of her technique, this video is one of my favorites, because the woman is delightfully, straightfacedly self-deprecating throughout. Solid cancer humor. This one offers a Millennial’s perspective on the whole ordeal. Also funny, but in a different way. And holy cow, does she ever have A LOT of ideas for how to manage her chemo curls. That’s the benefit of being in your early 20s, I guess: a greater willingness to spend time making yourself look beautiful. I’d prefer to complain.

My hair has always been wavy, but not curly, in spite of the best –and repeated–attempts of every hairdresser I’ve ever had to “bring out my curls.”

Now, those of you who’ve known me most of my life might chuckle at my insistence on this point, since you may recall my spiral perms in the ’80s. Those hairs were pretty darn curly. But only by way of plenty of stinky chemicals and hours with my hair in a plastic bag.

No, I inherited my mom’s thick, wavy dark brown hair, rather than my dad’s (also thick) curly, black hair.

Chemotherapy seems to have kicked in the paternal genes. In addition to some intensely curly hair, it’s now decidedly salt and pepper, just like Dad’s was for many years. Still, in spite of any genetic predispositions, it’s safe to say that this change is driven mostly by the chemo. This time it was the bags of chemicals injected into my veins that did it, instead of the bottles of chemicals squeezed on top of my head.

The thing that amazes me about chemo curls is that scientists don’t understand the underlying physiology that makes this happen.

I can see why the biochemistry of chemo curls would be low on the totem pole of cancer research. But I’m so curious! Here’s an interesting read by another person who tried to get to the bottom of this curious pattern. Alas, even this Nancy Drew couldn’t solve The Mystery of the Curly Coiffure.

or The Clue of the Terrible Tresses.

or The Message in the Ridiculous Ringlets.

or The Quest for the Frizzy Grail.

You know I could go on for a long time with this, right?

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Hair UPdate

Life, the Universe, and Everything

Sometimes in life you get to look back on a choice and recognize that it was a good one. For example, the fact that I decided to buy an Aflac cancer policy in 2009, at the age of 35, two years before I was diagnosed with uterine leiomyosarcoma. Or that I agreed to serve as an interim executive director in 2006 when my friend S. asked me to, launching a career path that I never would have imagined for myself. These are choices that, in hindsight, were both wise and fortunate.

But when you choose to commit yourself to a partner you must make a series of choices about that person. Every year, every month, and every day, you choose to be with them. (At least, that’s how one hopes it would work.)

When I look at the choices I’ve made about Husband, I can see they were good ones, and that I’m wildly fortunate to have had this man by my side, through thick and thin.

It is decidedly difficult to carry on a healthy relationship through cancer. Your interactions change (or don’t), your priorities change (or don’t), your needs change (or don’t)…you get the picture. As much as any relationship takes work, I think the addition of a disease or illness that makes a couple face mortality adds a different layer of challenge. This might be like getting to the 20th level of a video game, only important.

The challenges involved in sustaining healthy relationships during and after cancer is another reason for the growing interest in survivorship research. Being a “survivor” (a term for which I have no affection) entails a lot more than monitoring tumor markers and getting regular scans and sorting out the new normal of your body. Partners and other close family members bear psychological scars and triggers, just as the patients do. Figuring out how to navigate these emotional minefields is a long and ongoing process.

Husband and I have been together for fifteen years, and we’ve been going through this survivorship process for 5+ years now. It’s not been easy, but we’re still doing it. Together. Every day. I don’t know the words to describe the depth of my gratitude for his continuous investment in our relationship. Thank you, R. I love you.

***

And you, gentle reader. I’m also grateful for you, my friends and my family. Husband posted a beautiful Facebook post today on this topic, thanking the many people who have helped us in countless ways. Like Husband, you keep coming back to provide love, care, and assistance whenever we need it, over and over again. Thank you. I love you, too.

***

My motto this year has been “life is strange.” (Indeed, life has been stranger this year than ever, at least in my lifetime, not least because of cancer.) When I tell people my cancer stories and they look at me with that stricken, grievous face we generally offer to people we feel sorry for, I respond by saying, “life is strange.” This is an empirically true statement, of course, but as much as I’m down with empiricism, I’ve taken to using it because it offers me some peace. It occurs to me that this might be my own, non-religious version of the serenity prayer.

There are some things in life we can’t see coming. Some of them are good, or perhaps we make good choices to avert the things that are bad. Some of the things that come at us are bad, or perhaps we make bad choices to avert the things that are good. Sometimes we get lucky. Sometimes we don’t. Any way you cut it, life is strange.

In spite of this strangeness, I have so much to be thankful for. So today I revel in my gratitude. I hope you get a chance to do the same.

xo

Life, the Universe, and Everything

Belated Good News

Clearly, I’m better at sharing bad news more promptly than good news. I apologize to all of you for this, because you deserve to know the good news, too.

So, here it is: It’s been 73 days since I finished chemo treatments. I’ve continued to receive the two antibody infusions every 3 weeks.

As of my last visit on October 30, my blood work was excellent. Specifically, the CA27-29 tumor marker–the one with a value of more than 4,000 on May 8–was down to a value of 1. ONE!!! This is the level of CA27-29 that a normal, non-cancerous person would have. (Not that I’m a “cancerous person,” I hope…but you know what I mean.)

Check out those orange and purple balls! They’re almost off the chart again, but on the low side this time.

In short, this is the optimal outcome from treatment. The regimen worked, allowing me to transition to recovery mode.

And recover, I have!

  • My appetite is back. I’m not eating as much as I was, say, a year ago, but that’s not a bad thing. 😏
  • My sense of taste has returned. I’m now enjoying food again, experiencing the range of flavors that drive my love of food. No more eating cardboard
  • My hair is growing. I was curious about what my post-chemo hair would look like. Well, it looks gray. And black, which is weird, because my hair was never black. It kind of looks like someone used a shaker of powdered sugar over my dark hair. I know this is typically referred to as “salt and pepper,” but this looks different. To me, the gray seems to be a fine covering on top of the dark hair. Someone told me I looked “distinguished.” I think I just look old. (Though I do still love the short hair.)
  • Of course, growing hair and my lack of natural estrogen means that my facial hair is also growing back with a vengeance. It struck me as so odd that I lost most of my facial hair in the month after finishing chemo. But it’s grown back as quickly as I lost it. Now I have to do some serious grooming to keep everything under control: eyebrows, witch hairs, mustache. Sigh. It almost makes me miss my penciled-in eyebrows. Almost.
  • The neuropathy has improved a lot. My hands are recovering faster than my feet, although I still lack dexterity. Anything that involves picking up something heavy from underneath (like rotating our mattress, which I tried to do with Ray the other day) is very difficult, because I can’t muster the control of my fingertips to get under a corner. I’m still taking the gabapentin before I go to bed, and it helps.
  • My fingernails are still wacky. They look like a layer cake, with healthy nail near the cuticle, a no-man’s land of questionable commitment to the nail bed in the middle, and a top layer that is totally unattached to the nail bed. This is part of the complication with picking things up–I’m still afraid I might rip off a nail if I’m not careful. But it’s getting better. My toenails are also wacky, but it’s November…sock season!
  • And, finally, there is my overall well being. The fatigue I had during treatment, and for the first month or so after, is pretty much gone. I’ve been traveling a lot for work since September, and would have every excuse to feel exhausted. But I don’t!

All in all, I’ve been fairly shocked by how quickly I’ve begun to feel better. I’ll leave you with a few pictures, including my Halloween costume from this year. Husband had the great idea for me to dress up as Imperator Furiosa from Mad Max: Fury Road. Why, you ask? Because my hair was *perfect* for the part. Plus, it felt good to be an ass-kicker.

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Belated Good News

Keeping up the good work

Headline: I’m done with chemo

Subhead: Outlook promising,  Antibodies to continue

–———————————————-

I had another CT scan last Friday and we met with Dr. M this past Monday to get the results. M once again showed us two screen shots he’d printed out: one from my last scan in August and one from last Friday. I’m not posting the photo here because he drew on the print out and it’s hard to make out the differences. (And because I’m traveling today and forgot to take a pic of the pics.) Suffice it to say, the liver tumors shrunk even more over the past two months. My blood work is great and M was “very pleased” with the scan. This is pretty strong language from the good doctor, so we’re very pleased, too. When he left the office after our consult (in a somewhat disheveled rush, with papers akimbo, as is his way), he urged me to “keep up the good work.”

Of course, this begs the question, what comes next?

In the short term, as I’ve explained before, I’ll continue to receive Herceptin and Perjeta infusions every 3 weeks. Perhaps for the rest of my life. They also will collect blood samples during those visits, and I’ll be back to getting CT scans every 3 months.

Three is the magic number.

A quick accounting of my CT scanning experiences leads me to estimate that I’ve had around 20-25 scans since 2011. Damn. That’s a lot of radiation.

She-Hulk_new spiritsuperhero
The end result of too much radiation? Stay tuned!

Anyway, back to my update. Dr. M explained that we’ll proceed as noted above until there’s evidence of tumor growth or any other indications that the cancer is rearing its ugly, receptor-riddled head. I asked if they would return to Taxol in that situation, since I had such a good response to it. He didn’t directly answer me, but explained how pleasantly surprised the medical community has been by the THP regimen, because it’s been effective beyond their expectations.  It could be months or many years before I have any need for chemo again. And by then, who knows what the treatment options might be.

This is encouraging. But it also drove home the reality that I’m one of thousands who are still guinea pigs for this treatment.

Remember, the combination of these three drugs is still very new. It’s only been two years since the landmark Cleopatra study came out. We often hear, and sometimes have to think carefully for our own purposes, about clinical trials. But once a study has gone through phases I-IV and achieved FDA approval, we tend to think that the experiment is complete. That’s not at all the case. Although the THP treatment for HER2+ breast cancer has received all its formal approvals, every individual who uses this combo is another “n” in a longer study of the treatment’s effectiveness.*

So far, THP’s outcomes look great. Let’s hope my contribution to this experiment is on the extra long side of the “recurrence-free survival” spectrum.

Meanwhile, I have a hair update. The hair on my head is starting to fill in, though it’s still very short. My acupuncturist made a comment this week about me having thick hair.

“How do you know that??!” I asked, too quickly and with great interest.

“I can tell from how your hair is filling in,” she replied.

Hallelujah!! As you’ve likely gathered (ad nauseum), my greatest vanity in this process has been related to my hair. I’m cool with the Ripley-esque look, and have enjoyed hearing friends tell me it makes me look like a bad-ass and Husband saying it makes me look smart. (Which I don’t get, but I know he means it with love. Or maybe he’s seen too many X-Men movies.) And I’ve loved showing off my big dangly earrings. But I’ve definitely been nervous that my once thick and abundant hair would grow back thin and, well, post-menopausal. (Sigh) In short, I’m relieved to get an unbiased opinion that my hair seems to be filling in with its characteristic thickness. For that good fortune, I’m even willing to accept the uncharacteristic proportion of grays.

Another aspect of my hair has been unsettling lately, and that is the loss of facial hair. For the first four months this was great. No more post-menopausal upper lip hair to bleach, no “witch hairs” to pull, no random discoceries in the middle of an important meeting that I have a half-inch hair growing on my neck.

But over the past 3-4 weeks, I’ve been steadily losing eyebrow hairs and eyelashes. I now could count the number of individual hairs I have left around my eyes. I’ve lost all the eyelashes on the inner half of my right upper eyelid. My eyebrows consist of a few steadfast holdouts on either side, but precious few. Every time I wash my face or rub my eyes, another lash or three comes off, usually falling in my eyes and forcing me to rub my eyes furiously, causing a couple more hairs to jump ship. All I can say from this experience is that we have far more eyelashes than I would have guessed, since they fall out like maple leaves in a fall windstorm, yet I still have some left.

This facial hair loss makes me look weird. There’s no getting around it. I’ve never had big eyebrows or thick, luxurious eyelashes, but the absence of my meager allotment makes me feel naked in a way that’s hard to understand until you experience it. I’ve seen plenty of people who, for various reasons, have little or no facial hair. No problem! That’s just what they look like. It’s different to watch your own face transform in this way.

Mascara helps for the eyelashes, but I had to laugh at myself today when I realized I only had half a lid’s worth of lashes to mascarify. I’ve also taken to using eyebrow pencils. This also makes me laugh at myself, because it’s something I once thought I would never do. And it’s hard to find the right eyebrow pencil. I have two different pencils, neither of which is really quite the right shade of brown, and another powdery thing applied with a spongey brush that is a little too dark. It’s really hard to find the right approach…which leads me feeling a little self-conscious at all times. If I scratch my eyebrow, will the eyebrow come off on my finger? Or smear across my forehead? It ain’t easy.

We’ve all seen the ladies whose penciled-in eyebrows are entirely the wrong shade for their complexion, or all cockeyed, or otherwise unnerving in their precision. Hopefully none of those descriptions apply to my eyebrow drawing, but it still looks fake and, therefore, odd to see on my face. But I’m learning some grace and humility, I hope, because drawn on eyebrows are way better than five-random-hair eyebrows. Plus, I need to be able to raise my left eyebrow during conversations. It’s part of my communication tool set.

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*In scientific research, the number of individual samples you have in your study is referred to as “n,” for “number.” This applies across all fields, not just medicine. As a study’s n becomes higher, its results become more likely to be representative of real life, or what’s actually happening. Large studies of breast cancer tend to have huge n’s, in the 10s of thousands to the millions. By contrast, the largest study I could find when I was first researching uterine leiomyosarcoma had a sample size of a couple hundred people.

Keeping up the good work

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!

Still Vital

Overheard today while waiting to be called in for my vital signs to be measured: a woman wearing a head scarf (presumably over her beautiful bald head) came out from the area where they gather vitals before we meet with our docs. As she sat down across from me in the waiting room, her husband asked, with a smile, “Still vital?”

She smiled at him and nodded vigorously to acknowledge her sustained vitality.

I couldn’t help but smile and giggle at the exchange. I said to them both, “we have to take everything we can get. Being vital means we’re still here.”

They both laughed appreciatively and agreed. She gave me a long distance high-five.

Cancer camaraderie is the best. Well, not really. It’s fair to argue that non-cancer camaraderie is objectively better, because it doesn’t involve cancer. Still, it’s always satisfying to be able to have a meaningful exchange with relatively few words because the other person/people intuitively understand where you’re coming from.

Today was a THP day and chemo number 16. Whew! Stackin’ ’em up and knocking ’em down!

My friend D brought me to DF today. You may recall that Husband typically takes me on these long THP days, but he had a gig today that was scheduled months ago when we thought I’d be done with treatment by now. Sigh. No worries, D was excellent company and a careful listener during my visit with the PA today (Dr. M is on vacation).  And Husband is not so easily deterred. He called in for the meeting.

We discussed the status of my neuropathy, my increasingly random (and frustrating!) bouts of diarrhea, and the factors determining the end of this round of chemo.

I also got the results of my echocardiogram. The LVEF (Left Ventricle Ejection Fraction), which measures the degree of function in the heart’s most powerful chamber, is the critical number from this test. Before I started chemotherapy in May, my LVEF was 72%. Anything between 50%-75% is normal. As of last week, my LVEF had decreased to 60%. My PA didn’t give this a second thought, but it’s clear that the Taxol has taken a toll on my heart, as expected. It’s important to note that I’m not experiencing any symptoms that would indicate heart trouble, so I’m trying not to dwell on this big decline. If any cardiologists want to weigh in here to make me feel even better about it, I would welcome your comments.

Re: neuropathy, it has become more annoying over the past week. Thankfully, it hasn’t progressed much in my hands, where the numbness is confined to my fingertips above the “distal interphalangeal” or “dip” joints,  but it’s definitely become worse in my feet. I now feel a numbness or occasional tingling throughout both of my feet, not just my toes. I also have had some weird, uncomfortable feelings along the length of my legs this week. I can only imagine this is what Restless Leg Syndrome feels like, as my legs were, well, restless. The feeling kept me up (that and the excessive number of bathroom trips) most of Monday night. The PA couldn’t say for sure that this is neuropathy related, but it’s a reasonable guess, and likely.

At this point, there are 3 options to manage this neuropathy:

  1. Start taking Gabapentin, a prescription that alleviates nerve pain and, bonus!, aids sleep
  2. Start regular acupuncture treatments
  3. Decrease the dose of Taxol in my remaining treatments.

We’re going to do all 3, probably. I got a script for Gabapentin today and will make some appointments for acupuncture tomorrow. They left my Taxol dose alone for this week, but will likely decrease it next week. As it is, 16 consecutive weeks on Taxol is a long time, so it’s a) not a surprise that I’m having these cumulative side effects and b) kind of gravy for me to still be getting the chemo at all at this point.

Yes, I realize how ridiculous it is that I just described an additional three weeks of chemo as “gravy.”

The most significant part of the conversation with my PA today was a fuller appreciation (on my part) of the reality of being a metastatic breast cancer patient. I’ve been coming to this fuller appreciation in steps. Today, it came from PA’s response to my question about what metrics they use to determine when I will stop getting the Taxol.

My scientific brain was thinking in terms of percentage change, as in, when X% of the liver tumors have gone away, or Y% of them have shrunk by a certain amount, they will stop the chemo. Turns out that there are no real metrics. Instead, this is where the “art of oncology” comes in to play.

Sure, they’d love to see all the tumors disappear. But that hasn’t happened yet and is unlikely to do so in the next 2 weeks. Rather, they look at my liver tumor markers (down AGAIN this week! My CA27-29 marker is now within the normal range!), my metabolic panel, my side effects (especially neuropathy, b/c they don’t want this to get too bad or, worst of all, become permanent), and then make the call.

It’s crazy to think that I would stop getting chemo while there are still cancerous tumors in my body. This is a mind-bender for me, but I guess this is what Dr. M meant when he said my treatment will “intensify and de-intensify.”

I also learned today that I won’t have another CT scan as part of this decision-making process in September. They will wait a few months before I get another scan. At this point, I’m scheduled for two more weeks of Taxol (ending September 7), then my antibody treatment (September 14 and every 3 weeks thereafter). They’ll keep tabs on the bloodwork I mentioned above, and then restart chemo in the future as needed, if the tumors start to grow again or if I develop new ones. That chemo could be Taxol again, because I’ve responded so well to it, or it could be a different type of chemotherapy. This depends entirely on the situation…thus, the “art” of oncology.

Overall, this was a very good day. My tumor markers continue to decrease, in spite of Nurse M’s regular reminders that tumor markers eventually plateau or even occasionally increase. This is exceptionally good news. My liver function (evaluated in the metabolic blood tests) is all normal, and my PA said today there’s no reason to think that my liver function would be impaired over the long term because of this illness. My heart function is good. I’m going to stop chemotherapy in the near future, at least for a while. With luck, the neuropathy symptoms will dissipate (slowly) after I stop receiving chemo.

I’ve been feeling well, overall, with relatively high energy in spite of the diarrhea, neuropathy, and fatigue that I feel at the end of the day. That fatigue is partly due to my poor sleeping related to the foot/leg neuropathy. That said, my oncology nurse left me with some important reminders today.

I had a different nurse this week for infusion, as Nurse M is on vacation. Her name is Nurse S, and she is one of the most stunningly beautiful women I’ve ever met. Seriously, I was distracted by how gorgeous she was. (Bad timing for Husband.) She was also an excellent nurse, very knowledgeable and competent, as is the norm for DF.

Nurse S remarked on the fact that I’m starting a sixth cycle of Taxol, which is a long time to receive this drug because of its cumulative toxicity. She urged me to try acupuncture and to pay even closer attention to my side effects over the next week, as well as how I respond to the new drugs they’ve prescribed. At this point, the neuropathy could advance very quickly, as could the frequency of diarrhea and other side effects. They want to have the best possible information over the next two weeks in order to make the call about how to proceed in late September. Time to start keeping my log book again!

Finally, apropos of nothing, I have to note that Husband and I had some friends over to watch the partial solar eclipse this past Monday. We had 66% obscuration of the sun in Rhode Island, but it seemed like much more than that. We had this impromptu party because I waited too long to order ISO-approved eclipse glasses and had no choice but to order 25 of them. So I did. And we invited 23 people over to watch with us. Here are a few pics of our Field of Celestial Gazing (the backyard). If not for this darn cancer, I would have gone somewhere within the path of totality to experience the real deal, but unexpected diarrhea is not a pleasant traveling companion. That’s ok: Husband and I have already made plans to see the 2024 total solar eclipse in Texas, with some friends who live 20 minutes from the path of totality.

Because I’m still vital.

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Nanu nanu.

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Still Vital