Play it again, Sam

Back on the plane again after a full day at MD Anderson. I had back-to-back appointments, each of which took longer than anticipated (with instructions not to eat before the scan), so by the time we finished up, around 3 PM, people’s legs were starting to look like more and more like chicken drumsticks to me and I was gnawing on my arm. We had 15 minutes to scarf down some sandwiches before hopping into a car to the airport.

I was eagerly anticipating this appointment because I knew that my surgeon and The Godfather had had a few exchanges on my case, and The Godfather had presented my case at MD Anderson’s equivalent of a tumor board, a cross-disciplinary team of sarcoma doctors.

 

The report

After two cycles of the new drugs, gemcitabine and taxotere (gem/tax), we have once again stable disease. The tumor is about the same volume overall as it was last time, with some promising indicators: the perimeter of the tumor looks darker, which may indicate necrosis (decayed tissue), and there are a few darker rivulets throughout the mass. No evidence of spread to other areas of the scanned (chest to pelvic) area.

This is similar to what we saw after two cycles of the previous drugs: overall volume of the mass was the same, when you balanced out the tumor growth with areas of necrosis. After four cycles of the previous drugs, we saw no change, so switched over to gem/tax.

The path forward: two more cycles of gem/tax, and then another trip to MD Anderson for scan and assessment. Unless something drastic happens, like we get extreme shrinkage of the tumor (20% chance that that happens, and if so, we’ll probably do a few more rounds of chemo), we will most likely go to surgery 4-6 weeks after cycle 4 (so maybe late September). No one on the tumor board, nor my surgeon, was advocating for radiation pre-surgery. I was kind of hoping for no more chemo, because I’m kind of tired of it, but that timing works great for me – I can get the kids back into the swing of school before we do the Big Dig.

 

A/B Testing

I’ve been conducting a little experiment: after reading about a study in which regional hyperthermia (heat), enhanced the efficacy of chemotherapy drugs (the study is relatively new and the availability of this type of treatment seems limited, and isn’t available at MD Anderson), I decided to administer my own type of local hyperthermia (some of you may know about my past DIY healthcare initiatives, including home surgery, and won’t find this surprising in the least).

During cycles 1 and 2 of the first set of drugs, I used a heating pad in the area of my tumor, for at least 20 minutes a day. Result: necrosis on the scans. In cycles 3 and 4 of the first set of drugs, I didn’t do this; result: no further necrosis. During cycles 1 and 2 of gem/tax, I resumed the heating pad application; result: necrosis. It’s not a perfect experiment but I only have one mouse to work with, so based on the above, I intend to continue the heat applications for the next two cycles.

 

He who must not be named

A couple of weeks ago I was in the shower, which faces a mirror. I caught a glance of my eyebrow-less, eyelash-free visage, and was reminded of a celebrity that I couldn’t quite place…I looked like someone really familiar. It struck me as I was toweling off: Voldemort. I look like Voldemort.

Still, he is a celebrity.

Having no eyebrows, I have to sketch them on, so they’re a little different every day – and I alternate between looking angrier and more surprised depending on how they come out.

I’ve often thought that one’s appearance was an expression of one’s inner self. But what I never realized was how much your physical appearance influences how you perceive yourself and your environment. Often times now, I walk around bald – it’s warm outside, and it’s just more comfortable. If I’m motivated I put on earrings, just to signal that I’m female. And sometimes I’ll wear bright lipstick, as if to say, “at least I still have lips!”.

When I see a bald person now, I almost always assume it’s a woman.

Because I look like this, I often feel that I should have an (unlit – because cancer) cigarette handing out of the corner of my mouth, and maybe a box of cigarettes rolled up into the cuff of a white Hanes t-shirt. I sometimes think I should ride a motorcycle, and maybe a sleeve of tattoos on each arm (white blood cell count permitting).

One day, my bald self and I were waiting on a field to pick up one of the kids, wearing bright lipstick and earrings, when a car drove by slowly and the woman inside peered over at me. I looked away, fearing, I don’t know, maybe a confrontation of some kind because I looked so creepy? “Hey!” she shouted as I hoped she would go away.

“I just wanted to say,” she said. “That you have the most strikingly perfect head. You look beautiful!”

I was so relieved. And thankful. Because even though I knew deep down in my heart that I look like Voldemort, it was nice that someone took the time to make me feel like I was okay.

 

Training for the big one

In the meantime, while I go through chemo and in the time before surgery, I’m focused on getting really strong. When I feel well, I train hard; one day I took one of the kids to the beach where we did stair sprints, 4 steep flights each way. They kicked my butt, but that didn’t stop me from yelling, “keep up with the cancer patient!” to her the whole time.

I’m diligent about doing something active every day (though I cut myself some slack on infusion days), and alternate between cardio, strength training and yoga. I know of a woman who recently had a similar surgery, and at five weeks she was still hospitalized, and last I heard they were going to have to remove her stomach because it stopped working after the surgery. I don’t know the details of her case, or her backstory, but I like my stomach, and I’m going to try to do all I can to make sure that I come out of the surgery strong – even if missing a few organs.

I’m also keeping up with my mental training. One of my friends is the CEO of Wellbrain, which is a company that works with clinicians to implement mindfulness into their pain management practices. There are some interesting studies showing that even just 10 minutes of daily mindfulness practice 4-6 weeks before surgery can improve pain tolerance by 50%, reducing the need for narcotics. I’ve meditated daily for about two years now, and am keeping it up because I know I’ll need it, not only to get through my current chemo treatments, but especially the post-surgical period.

 

The bright side

  • I’ve noticed, based on movies, that there are more bald people in space and in the future than anywhere else. This bodes well for me.
  • My mom was able to get consults at Stanford and at MD Anderson (with the generous help of The Godfather), so we’re feeling a lot better about her care. She’s going to be treated at MD Anderson as well.
  • We had a scare with one of the kids – an apparent sports injury unveiled a tumor on her femur. After a nail-biting couple of weeks we were relieved to find out that it was benign – and she’s back in full force with her sport.
  • I had to go in person to renew my drivers license. Though I had high hopes of having a blue wig for my photo, technically they don’t allow wigs, so I went in with my most believable one – the Chloe Kim. Nobody questioned it, I passed the eye exam (which I was worried about given the way the chemo’s been affecting my vision), and I successfully renewed my license.
  • I love seeing everyone’s vacation pictures. Thanks for sharing all your amazing, happy experiences. I love seeing people happy and living life.
  • I continue to be reminded that I have won the friend lottery, with the most generous, tireless and entertaining friends. Thank you.

I saw a meme this week that reflects my thoughts exactly: Thank you cancer, for showing me what’s really important in life. You can go now.

 

 

And the runner up is…

I started this post earlier today when I had less information, when I was Googling things like “DIY radiology” and wishing I could binge-watch this cancer to skip ahead, but we have a leader now in the question of cat versus lizard.

Yesterday, my tissue samples had still not been sent from Scripps over to UCSD. After calling repeatedly, eliciting the help of some Scripps doctor friends (thank you!) and faxing (yes, still a thing) requests in 48 point font with “STAT” written all over and stars all around it to multiple numbers, I finally got an exasperated phone confirmation that they were being sent over. They arrived this morning so that a second pathology can be done at UCSD to validate diagnosis. This will take another 5 business days or so — so I’m not sure whether we’ll have this second opinion done in time for my next appointment on the 28th.

What we know

The latest CT scan shows no evidence of spread to the lungs — that is good. While CTs don’t catch anything under 1 cm, this bodes well that the sarcoma is localized.

The tumor has grown 6-8mm wider and 3mm larger front-to-back since the last scan, two weeks ago.

The MDM2 results from the original pathology from Scripps came back negative: this argues against dedifferentiated liposarcoma and is more likely leiomyosarcoma. Leiomyosarcoma is the one where I likely start with chemo to get the tumor growth under control, and then lose a bunch of organs in surgery (adrenal gland, kidney, part of the liver and get my inferior vena cava reconstructed).

That surgery sounds kind of painful. Every time I saw someone get stabbed in the abdomen in Black Panther, I wanted to shout, “How much does it hurt?? How muuuuuch??”

On treatment centers

I impulse-buy homes, but with everything else I’m pretty careful. Once I was referred to UCSD, I wanted to triple-check that this was the right place to be. A bunch of sites and sarcoma boards I visited stressed the importance of going to a center that was recognized by a major organization, like Sarcoma Alliance or National Cancer Institute, and UCSD, though they say they’re a high volume facility, wasn’t one of them.

What was important for me to know was the key driver of this push for certain facilities — and from what I could gather it’s:

  • Expertise of surgeon, particularly in sarcoma which behaves differently from other cancers, and for which getting the surgery right is critical.
  • Multidiscliplinary team including surgery, medical oncology, pathology, radiology.

UCSD ticks the boxes on both. There are great sarcoma centers at MD Anderson in Houston and Memorial Sloan Kettering in New York, but for various reasons, I would prefer to be treated closer to home. I reconnected over the weekend with a friend who I recently discovered is a surgical oncologist specializing in sarcoma, and who trained at MD Anderson. She said she saw patients who got treated away from their families, and it tore them apart. That would definitely be me.

After a process I’ll call The Great Vetting, involving a network of old friends and friends of friends in the sarcoma world, I feel good about UCSD and in particular about my surgeon.

The bright side

A friend sent me an article recently about uncertainty. My favorite quote is this one:

“When things are overwhelmingly hard and scary, and the prognosis is generally not good, sometimes hope lies in the unknown. Uncertainty is hope.”

I was texting with another friend who had cancer. We both now have a lifelong slow dance with uncertainty…but maybe it’s always been that way. We only notice because of the cancer.

In one of my 2 AM Google excursions, I found some data on outcomes of retroperitoneal sarcomas. The data sets were so small that the results were listed by physician name. Because of that, I conclude that those outcomes don’t apply to me.

The bar for “fun” now is pretty low. “Not cancer” = “fun”. Explore tax implications of various financial transactions? Yes, please! Scrubbing toilets? What could be more satisfying! Emptying the dishwasher? I have full mastery of that!

Other things worth appreciating:

  • Reunions with old friends from all over the country, and how lucky I am to have friendships that have spanned multiple decades.
  • New pans: got rid of the old non-stick pans and switched to the non-toxic ceramic-and-titanium Scanpans — which are awesome.
  • My mom fighting my cancer by cooking up magical Chinese broths, and my dad driving her over to me.
  • My amazing husband who tirelessly supports me and figured out how to make rolled oats not taste like paste; my kids who have stepped up their household game to help out.
  • The irony that I’m now on a vegan diet. I realize this is due to a lifetime of mocking vegans.
  • I believe that I can now play a doctor on TV.
  • Enjoying hair while I have it.
  • Each of you, who have somehow found your unique roles in helping to cheer me on and support my family, through prayer, food, laughter, books, advice, exercise, balloons, entertaining my kids, driving, commiserating, sharing your own experiences, crying, coordinating, face masks, pictures, leveraging your networks, using your professional skills and hugs.

I never knew that my village was so big.