My Team

I am feeling better today, thank heavens! I'm even writing this sitting up, which is saying a lot. 

Now that I can lift my attention from the individual moment, I want to devote a post to introducing my support team. A friend has taken to annotating texts that mention supporting me with #Team Amalia, and I feel a warm glow every time I see it. I do indeed have a great team.

The Medical Team

I have not one, or even two, but three oncologists.

Surgical Oncologist: This is the one I saw first and who put my port in. Mostly he'll be waiting in the wings until after my chemo/immunotherapy to see if surgery is recommended at that time. If it is, I'll be extra glad that everyone says he's the very best.

Medical Oncologist: This is the one I saw second and who is in charge of my treatment and day-to-day care. He is also highly recommended. I am deeply grateful for the level of accessibility that he and his practice provide for their patients. If I have a concern, I get an answer within minutes. He reassured me today that as we get to know how I react to chemo, better countermeasures to the side effects can be deployed. I am greatly relieved!

Research Oncologist: I have also been to see an oncologist who specifically researches mesothelioma at Johns Hopkins and who also comes with the highest recommendation. She helped to tailor my treatment protocol to my health history and genetic profile, which included getting carboplatin instead of cisplatin and getting my vitamin B12 shot a few days before my first treatment instead of during it. She will be able to connect me with the latest treatments and with clinical trials in the future.

In general, it's been gratifying how knowledgeable, attentive, and helpful all the doctors, nurses, and other medical staff have been. The nurses deserve special recognition for their unflagging care in the absence of the prestige with which physicians are compensated. 

It has been gratifying but very odd to get extremely prompt service, such as appointments within a day or two of requesting them, not the "Dr So-and-So has a free appointment slot in three months" that I'm way too used to in other healthcare contexts. It's yet another way in which having cancer puts you in a new and strange world. I can't help think of the supposed ancient Chinese curse: May you come to the attention of important people.

The Home Team

I couldn't ask for a better home team. The players are

Anand, husband: Anand is driving me to appointments, reading me stories, running errands, and learning about the household finances so as to be able to fill in for (or take over from) me. He's been juggling his teaching schedule at Johns Hopkins remarkably well under the circumstances.

Gita, daughter: Gita canceled her class at Spelman College, closed up her house in Atlanta, packed up her two cats, and moved in to help take care of me. Thanks to her channeling her inner Indian grandmother, she got my caloric intake back on track. She is working on her Emory postdoc remotely this semester.

I don't know where I'd be without the two of them. 

There are also the cats, of which there are now four. We are working very slowly toward integration. For now I'm just glad we bought a larger house than we thought we needed when we moved to Maryland as empty nesters.

The Away Team

These are all the wonderful people who are supporting me and my family in various ways. You know who you are! People have

• texted, emailed, and called with messages of support
• written an actual letter on real stationery
• sent cards or flowers
• come over to visit
• sent useful, meaningful and/or whimsical (pictured) gifts 
• suggested music for my playlists
• shared experiences with cancer and chemo
• coined #Team Amalia

From a member of the Away Team

Ambitions

This morning I had grand ambitions: I washed my hair. It almost did me in, and I staggered back to bed.

Things have been tough. Various people have assured me that the chemo after-effects last only a few days, but... No, I haven't been that lucky. I keep thinking that now, surely, I'm pulling out of it, only to be felled again. Ambitions keep having to be modified.

For anyone who has gotten a text from me assuring them that I'm doing "better" now, consider that if I am up to texting, I am by definition doing better than I am at my worst. Thus I always think I'm telling the truth at such moments, but those moments may be temporary.

I do have some hope for improvement, though. For one thing, more time has gone by, and the side effects do eventually resolve. For another, I've been prescribed a proton pump inhibitor, which can apparently be very helpful. And for a third thing, I have rediscovered the comfort of a traditional South Indian remedy, yogurt rice.

Meso messaging

Meanwhile, my daughter has indulged in some retail therapy on my behalf, including fitting us all out with anti-mesothelioma wear.

In other good news, my bodily fluids are no longer toxic from the chemo chemicals, and family members no longer have to use a different toilet or refrain from touching me if I break out in a sweat. A small win, but we take what we can get.

Flattened

For the past 48 hours I've felt pretty flattened. I have ondansetron and therapeutic sound frequencies to help with the nausea, but that still leaves me flat on my back, limp as a wet rag, and uninterested in ever doing anything again. 

The fact that I am writing this post (though from a horizontal position) is indicative of light at the end of the tunnel, I very much hope. They do say that chemo after-effects mostly clear up after about two days.

Meanwhile, I have worried my cat, Hekla. She's been spending a lot of time staring at me in concern. She is not at all sure that the food that other people put in her bowl is actually the same stuff as what I feed her. Her little world has been upended.

So has mine, Hekla, so has mine!

Hekla is worried.

Musical Ambush

I was going to do a post yesterday, but I felt pretty washed out after a night of insomnia. It turns out one of the very wonderful medicines they give to counteract chemo side effects, dexamethasone, itself has insomnia as a side effect. Today, after less insomnia (and a lower dose of dexamethasone), I'm a little more alert but I'm also starting to feel a bit nauseated. At this point, ondansetron (anti-nausea) is my friend.

Backing up to Monday, I went in to the chemo infusion center in the morning. The center is a field of low-walled cubicles, rather like some work places I've seen, but with reclining chairs and IV drips and nurses' stations around the edges.

My cubicle, with Warmie in the background

I got a place near the window, which meant a cold draft but a better view. At least they give out warmed blankets.

The nurses complimented me on the progress my port was making in settling in (it was indeed feeling better by then) and on the proper preparations I had made, applying lidocaine cream and covering it with plastic wrap. Then they accessed the port for the pre-infusion blood draw, and I nearly passed out. Both the nurse and my oncologist, who stopped by, told me this was just because it was the first access and the actual chemo wouldn't affect me like that. It turned out they were right about the chemo not affecting me like that, though I have my suspicion that my reaction was at least partly because of the difference between drawing out and putting in rather than between first and second times. I tend to get light-headed for blood draws anyway. They reclined my chair, gave me an ice pack for the back of my neck and a glass of ice water, and went off to test my blood and mix up my infusions.

So there I was, waiting for the infusions to start, feeling exceptionally vulnerable. I put on my new headphones, started the "Peace" playlist I had assembled, and turned it to shuffle. First up was James Taylor's cover of "You've Got a Friend." Perfect. Then the Duruflé "Ubi Caritas." Excellent. Then the Beatles' "Let it Be." Excellent again. I was beginning to relax, and congratulated myself on the construction of my playlist. The fourth selection was Israel Kamakawiwo'ole singing "What a Wonderful World." I looked out the window and thought, It is a wonderful world. And I want to stay in it.

And suddenly there I was, in tears. I find the quieter songs do this to me sometimes. They just leap out at unsuspecting moments and ambush me. And yet at other times their calming influence is invaluable. I may need to do some heavier-handed curation. Or it may be that the effects of any given song at any given moment may be entirely unpredictable. 

It may be just as well. If mesothelioma doesn't sometimes reduce a person to tears, they're in serious denial.

The first round of chemotherapy-cum-immunotherapy is now two days in the past. Side effects tend to peak Days 3 and 4. Fingers crossed!

One Done!

Very quick update: I made it through the first round of treatment! Granted, the side effects usually only kick in 4 to 48 hours later, so we'll see how that goes.

There are only three to five more of these particular treatments to go, at three-week intervals. One down is therefore a huge step.

Meanwhile, thanks and love to all who have sent supportive messages!

Oh, and I learned what the "fight cancer" plushie at the oncologist's is: a gnome. Tucked under my arm in the photo below is Warmie the Snow Leopard. Or Snow Leopard the Warmie. A very useful combination of heating pad, pillow, and emotional support critter—highly recommended.

Round One

The C-Word

Cancer is one of the scariest words in the English language. But not all cancers are alike, and medical science has made tremendous strides in diagnosing and treating some of them. There is cancer and there is Cancer. And then there is CANCER. In other words, in the absence of metastasis, some cancers, such as testicular cancer, are now very treatable. They even use the word cure in speaking of them, not feeling obliged to stop with the weaselly remission. The more serious Cancers, like leukemia, still claim too many lives, though not nearly as many, proportionally speaking, as they used to. 

And then there are the CANCERS, which still really, really need medical breakthroughs. Which is a polite way of saying they still kill most of their victims. These are cancers of the pancreas, liver, esophagus, brain, lungs, and ... mesothelium.

What's a mesothelium? (Who even knew they had one?) The mesothelium is the lining of various internal organs, including the lung, gut, and heart. The lining of the lung is called the pleura, making my kind of mesothelioma pleural mesothelioma, the most common kind.

I spotted this plushie at my oncologist's office.
I don' t know what animal it was, but I agree with the sentiments.

Another terrifying C-word of note just now is chemotherapy. The very word conjures up immense suffering, which is entirely understandable for a treatment that can trace its origins to the use of mustard gas during World War I. However, since its first uses—and even since I first became aware of it in the 1970s—chemotherapy has become more sophisticated and better targeted at the cancer rather than its victim, and treatments for side effects have likewise gotten much better. 

I start chemo tomorrow, along with immunotherapy, which aims to teach one's immune system that cancer cells are foe, not friend. I am frightened. But I am also eager to get started on fighting back. So far we have done fact finding, strategizing, and defense building, but not yet anything offensive. It's time to fight.

I will bring my headphones so I can listen to whichever of my three specially curated playlists (Peace, Joy, or Fight) I end up feeling I need. I'll bring a blanket and a book. And my loved ones (husband and grown daughter, only one of whom will be allowed in the room with me at a time, but who can spell one another). And, I sincerely hope, my courage.

Meanwhile, my port and I seem to be adjusting to each other's presence, so that's a win!

Port or Starboard?

I'm recovering from the port placement, but from my position here in the calm before the chemo storm it has yet to endear itself to me. It aches, and I find myself unenthusiastic about moving my right shoulder. They say that one's body and mind both adjust to it after a while--the sooner the better, I say!

I almost had the port put in on the left side of my chest, but luckily my husband asked the surgeon if that was really necessary, given that I am left handed. No, said my surgeon, it can equally well go in on either side. So we chose the right side for the reason my husband had identified.  It turns out there is another reason why that was a very good choice: I was already having trouble lying on my right side due to the disruptive presence of seven tumors in and around the lining of my right lung. Having more trouble on the right side turns out to be less disruptive than bringing the left side into the mix. 

So I have a starboard port.