My Other Goal

Working on Goal #2

As 2024 drew to a close after a year of mysterious illness, I found I had only two major goals for 2025, which I listed in order of expected completion:

1. Get the second edition of my book out. This was scheduled to involve responding to copyedits, reading proofs, and assembling the index.
2. Get well.

Almost immediately, I had to revise. In light of my diagnosis in early January, I had to downgrade my second goal to

2. Survive the year.

At this point, now that I am responding well to the chemunotherapy, I am fairly confident that I can achieve this revised goal, though I'll have to wait till the end of the year to check it off.

Which leaves the other goal, the second edition of my book, The Writing Revolution: Cuneiform to the Internet. Just now I am deep into the reading of proofs, with the index yet to go. So far the proofs have contained a few errors in almost every chapter, distributed among ones that 

1. should have been caught at the copyedit stage (Why did I capitalize conquest only three out of four times in the phrase "Spanish Conquest"??),
2. were introduced at the copyedit stage (No, it's not OK to label a table column "Later etruscan," and don't get me started on how bad the copyediting was.), or
3. involve inaccurate typesetting of the scripts or fonts I'm discussing (A mention of the dot placement that distinguishes Hebrew shin from sin somehow ended up with both of them having the dot on the right.).

On Friday, after proofing several chapters, I went out to run an errand. Between illness and low immunity I haven't been going out to shops much. Mostly I just go to medical appointments. Doing academic work and errands felt comfortably normal—so much so that for a moment I forgot my cancer. It still comes as a surprise sometimes.

Now I have one more chapter and some front and back matter still to go. Then the index. Or rather, part of the index, followed by chemo, followed by more of the index.

I'll manage this goal yet!

Chemo Plant #3

I've made it through the post-chemotherapy Unpleasant Side Effects Week from my third round of chemo and am now embarking on Low Immunity Week, which has its dangers but feels much, much better.

As I mentioned briefly in my last post, my oncologist is very happy with the progress I've been making and says that I probably only need one more round of chemo. When he told me at the start of my treatment that I would get four to six rounds, I thought that the reason to stop at four, if that happened, would be that I was getting too many side effects. But no! Or not necessarily. He thinks I can stop at four because it seems to be working! It turns out that if I get good enough results from four rounds, it's best not to give additional rounds. Apparently there are only so many total times a person can take carboplatin in their lives. Eventually anyone who takes it will get an anaphylactic reaction, but the number of doses it takes to get to that point varies from person to person. Thus it's best to save some of my allocation of carboplatin for a later time in case I need to get chemo again.

Which implies that the oncologist thinks there will be a "later" for me. Which is very good news, given average survival times with mesothelioma.

It also means I only have to endure one more Unpleasant Side Effects Week.

After my next round of chemo I'll get another PET scan, which will show more definitely how much progress I've made. Then I will probably switch to getting my immunotherapy at twice the dose but half the frequency, possible for as long as two years.

With the aforementioned good news, it is clearly time for my third chemo plant. I have decided on a 'Day' avocado tree. It will be yet another container plant that I will need to find space for on my deck for the summer and then in my house for the winter. But that's a good problem to have!

Meanwhile, Chemo Plant #2, the tree rose, is waking up from dormancy.

Chemo Plant #2 awakes

Three Done!

Today I survived my third round of "chemunotherapy," and I'm doing as well as can be expected. The metallic taste in my mouth has started, as has the occasional odd feeling of something crawling around under my skin. The anti-side-effect medications are doing their job, though, so I'm not complaining.

Meanwhile, I have good news! I met with my oncologist just prior to the infusion, and he is very pleased with me. He says I'm am turning out to be "good responder" to the therapy. That means in part that I'll only need one more round of chemo in this series, though I'll probably stay on the immunotherapy. 

I'll write with more details about what this all means another time, but for now I just wanted to share the good news.

In another quick tidbit of news, Gita is getting very good at making mocktails. With the margarita-inspired drinks below, we fortified ourselves for this chemo week.

Raise a (Non-alcoholic) Glass to Chemo

Third Time's a Charm?

This morning, it being Sunday, I put all my medications for the week into my pill organizer or "dosette box." As happens every time I do this, I found it rather mind-boggling just how many of them there are (pictured). It's yet another aspect of my current life that triggers the odd sense of having slipped into a parallel universe.

The week's pills

This morning's pill allocation also drove home the fact that tomorrow I'll be going for my third round of chemunotherapy, as I had to add dexamethasone (a corticosteroid given to counteract chemotherapy side effects) to my pile of pills for today and Tuesday, and an anti-nausea medication for tomorrow through the rest of the week.

I'm feeling rather different about this upcoming round of treatment than I did about the previous two. The first time I was very anxious because I didn't know what to expect. The second time I was anxious because I thought I did know what to expect. However, that expectation turned out to be somewhat untrue, thanks to better side-effect management the second time.

This time, I am almost welcoming the treatment because I can tell it's been working. I am in significantly less pain, my cough has cleared up, my appetite has improved, and I can lie on my right side again without feeling like I'm lying on a wooden plank. And all this improvement is from only two treatments! So I now have positive associations with chemo as well as the less-positive ones.

There are risks associated with each treatment, though. Each time, they have to check my blood counts, as I may not in fact be in good enough shape to have the treatment. And there is at any point (even months after the treatment ends) the risk of the immunotherapy triggering a new autoimmune disease or a serious flare-up of the one I already have. Then there is the ongoing risk of other reactions: I just heard last week of a mesothelioma patient who reacted to the chemo on her sixth round of treatment.

So you never know. But hopefully I'll get through this next treatment in decent shape, and then the drugs can get on with the job of poisoning the cancer.

Tea and Roses

This is Week 3 of the treatment cycle, so I'm doing pretty well. I can already feel improvement after only two rounds of chemunotherapy, so that is very encouraging. I'm always tired from the immunotherapy and the insomnia, though, and I have to watch out that I don't overdo things and exhaust myself.

Today my tree rose (Chemo Plant #2) arrived as a bare root plant. I soaked its roots and stuck it in a container on my deck.

Tree Rose (Chemo Plant #2)

So far it looks pretty uninspiring, but this is entirely normal for plants that are shipped bare root. Hopefully it will come back to life soon. It and me both, I hope.

Today I also made an expedition to the Wellness House of Annapolis, a local nonprofit devoted to cancer patients and their caregivers. It was a tea, so I figured it was as good a time as any to go scope out the place. There were a lot of breast cancer cases in attendance, as I expected, and even in that cancer-focused context I had to explain what mesothelioma is. 

I'm glad I at least got out of the house today, even though I didn't know anyone there and came home exhausted. I'm not yet sure how many of their programs might be right for me. I'm eyeing their horse therapy, though, because Gita would really love it. I'm hoping she and I can go to that together sometime after my next chemunotherapy session and recovery period. It will be a matter of signing up quickly when April's events are posted.

Meanwhile, I am savoring every sign of spring.

Mesothelioma Heroes

Today Gita has gone to Washington, DC to participate in a Stand Up For Science protest. She has many reasons, including her own job, to be concerned about science funding, but she is choosing to emphasize my concerns (first photo) as well as the universality of science (second photo).

The mesothelioma ribbon is at the top, in the middle.

Gita, ready to set off for DC to fight for science

As I've stated before, my home team is strong. On the larger stage, there are other mesothelioma heroes who are fighting for people like me every day and whom I would like to acknowledge here. Chief among them is the Mesothelioma Applied Research Fund (MARF), also known by the slogan in their website's url, curemeso.org.

MARF provides information, funding, support, and advocacy for mesothelioma patients, caregivers, and researchers.

Information. MARF's website provides information on mesothelioma in general, the different types of mesothelioma, current treatments, clinical trials, and the location of specialists. Given the rarity of mesothelioma, this information is not always easily available elsewhere.

Funding. MARF provides funding for mesothelioma research, with an emphasis on early-stage research that has a harder time attracting funding in the larger world of competitive grants. They also provide financial assistance for mesothelioma patients who cannot afford to travel to receive the treatment they need.

Support. MARF provides a range of support services, including online support groups for patients, caregivers, and bereaved family members, and an on-staff specialist nurse who is available to answer questions. They also hold an annual International Symposium on Malignant Mesothelioma to build community, share strategies for treatment, survival, and legal redress, and showcase the latest research updates.

Advocacy. MARF supports September 25 as Mesothelioma Awareness Day and advocates for mesothelioma research before congress.

My hat's off to these folks.

Ten Silver Linings

If my cancer is, metaphorically speaking, a great big, roiling, tornado-spawning black rain cloud, then it may be time to think of some silver linings. I say that with some hesitation, however, as I don't want to be misinterpreted as embracing denial or toxic positivity. Silver linings do not make the black cloud disappear, but they do give me things to savor, be grateful for, or even revel in while the storm rages.

A tornado near Anadarko, Oklahoma (public domain image)

Some silver linings are best observed through the lens of dark humor; others are more suited to a general audience. I'll start with the latter. 

1. I get to spend more time with my family, particularly Gita, the best daughter in the world, whom I now get to see every day.
2. I've been able to reconnect with old friends. I've heard of cancer ghosting, but I haven't experienced any of it myself. Instead, my friends have rallied around to a truly heartwarming degree. 
3. I have lots of guilt-free reading time. I've read a lot of books in the last two months, and I have spent no time at all thinking I should really be doing something more productive.
4. I can eat as much as I want to. Having lost a lot of weight in the last year (cancer will do that to you), I am now being encouraged to eat as much as I want to. I am not, however, being allowed to eat as little as I want to. If I forget to eat, Gita will show up at my elbow with something caloric. How many other people can claim to have gained weight while on chemo?
5. I've finally learned to live in the now. My time horizon is very short these days, and I really have to just take each day as it comes—exactly as they say one should.
6. I'm accumulating chemo plants. As mentioned in a previous post, I've decided to reward myself with a plant for each round of chemunotherapy. In general, I'm loosening up about spending money for things that make life easier, healthier, or happier.
7. I have the mother of all excuses. I don't have to do anything, go anywhere, or see anyone if I don't feel up to it. This particular point has a dark side to it, though, as I have not been able to help my siblings take care of my parents lately.
8. I get all the attention, medication, and validation I need from the medical community. I mention the validation here especially because after a year of progressing illness and a frustrating round of medical appointments and tests, I was beginning to worry that I was going to be dismissed as a hypochondriac. My GI doctor told me she thought I had irritable bowel syndrome; my insistence that it was something more serious made little or no impression. The actual diagnosis has been a severe blow, but it has also been validating. 
9. I am no longer afraid of Alzheimer's Disease. My mother has Alzheimer's, and I had developed a healthy fear of it in recent years and begun assiduously tracking relevant medical advances and doing brain exercises. Now I know that I probably will not live long enough to get Alzheimer's. Similarly, I am now much less worried about old age in general. Instead, I have decided to embrace new signs of aging as they come. Every new gray hair and every new wrinkle will be one more gray hair or one more wrinkle that I have lived long enough to acquire. 
10. People have finally stopped telling me that it could be worse. When I experienced trauma as a younger person, I found it both strange and hurtful how many people would dismiss my pain because So-and-So had it far worse. It seemed as though, for some bizarre reason, only the most unfortunate person on earth was due any compassion. I am not in fact the most unfortunate person on earth, but mesothelioma is bad enough that no one so far has tried to pull the old "it could be worse" trick on me.

Chemo Plant #2

I have made it past the worst effects of my second round of "chemunotherapy," so it's time for my next chemo plant! This time I'm am getting a 24-inch tree rose. This particular variety claims to be  resistant to many diseases, including the dreaded black spot of roses, thus I am going with this Take It Easy variety rather than the more deeply red Black Cherry variety that I found elsewhere and salivated over briefly. At this size, it should fit on my back deck—though my back deck will, as usual, be very crowded once the tropical plants go outside for the season.

Meanwhile, my new little kumquat tree (chemo plant #1, pictured) arrived on Saturday and is settling in nicely.

Kumquat: Chemo Plant #1

As for me, this round of chemo aftereffects went a bit better than last round's, what with better medication and better knowledge of what to expect. It still has not been any fun, though. There's the insomnia and exhaustion, the nausea and general malaise (thankfully greatly muted by the medications this time), the sore gums, the runny nose and itchy eyes, the metallic taste, the flushed face, and (less overtly) the chance of plummeting blood counts resulting in infection and/or suspension of treatment. 

The good news, though, is that I think the treatment is starting to work! I am in much less pain than I have been in for several months. My cough (caused by "pleural effusion," or fluid in the pleural space around the lung) has nearly disappeared. My lung feels much less stiff when I breathe. I'll have another PET scan after another two treatment rounds, and we'll see just how much progress has actually been made. For now, though, I'm going to enjoy my next two chemo-free weeks as much as I can.