Mesothelioma Awareness Day

Tomorrow, September 26, is Mesothelioma Awareness Day, the second since my diagnosis. This year's Mesothelioma Awareness Day is particularly relevant because we have just passed the twenty-fifth anniversary of 9/11. The fall of the Twin Towers released large amounts of asbestos dust into the air, as recently released documents have confirmed.  Asbestos causes mesothelioma, but it generally has a twenty to fifty year latency period. This means that we will probably soon see an upsurge in meso cases among first responders, clean-up crew, and the general population of lower Manhattan.

Things you can do:

1) Wear blue! 

2) Learn about mesothelioma symptoms, particularly if you were exposed to the dust from 9/11. Symptoms include a dry cough and chest pain for pleural mesothelioma and abdominal pain and bloating for peritoneal mesothelioma.

3) Get rid of any talc-based beauty products. Talcum powder is contaminated with asbestos.

4) If you are planning home renovations, learn about where in your home asbestos may be hiding.

5) Support the work of the Mesothelioma Applied Research Foundation (MARF). On the 25th and 26th of September MARF is running a matching challenge grant, whereby donations will be matched up to a total of $25,000. You can give at the main donation site, or you can help me reach my fundraising goal. My fundraising page is here. These funds will go toward research to help find better treatments or even a cure.

"Hope for a cure," says the stem of the flower.

Quiet

It's been very quiet around here the last few weeks. Perhaps too quiet. About all I have to report on the health front is that I have developed a radiation burn on my back where the protons went in. It's like a bad sunburn. Hopefully it will ease soon.

In other news, Proton the kitten is growing fast and is a source of great joy and, occasionally, anxiety (see picture). He is very good at snuggling but not so good at using the various scratching pads and posts scattered around the house—even when these are dosed with catnip. He seems to be immune to catnip, and the furniture is suffering as a result.

Proton on top of my grandfather clock, seven feet up

To Canada

Back in July, Anand and I looked at the calendar and noted the dates of my proton beam treatments, my next immunotherapy infusion, and the start of his semester. Between the second and third of those items we found a free week, so we booked ourselves a flight to Nova Scotia to see my parents.

To be honest, the trip was a challenge, and if I could have waited a bit longer past my proton radiation treatment before traveling I would have done so. I still feel tired and weak a lot, and it is difficult for me to be out and about, where places to sit down, to lie down, to retreat from the public eye, or to find a bathroom are not as readily available as at home.

It was good to see everyone, though. There were lots of family members besides my parents to catch up with as well. Pictured is one of the horses from my family's horse tour business (an old photo, but still relevant).

Horse tours with Trot in Time

Every time I go to Nova Scotia I know that it could be the last time I will see my parents. This time my mother, who has Alzheimer's, forgot at one point that I was her daughter. That was a strange experience. Most of the time, though, she recognized both me and Anand and even asked after Gita.

Now we are home, and I have a paper to write up based on the talk I gave in June. I have a bit of a break from treatment, with no treatments scheduled in September. My next immunotherapy infusion is scheduled for October 1.

Finished

As of last night, I am finished with my proton therapy!

It was a bit complicated getting to that point, though. In fact, it was nearly 11:00 PM by the time we got home last night.

First we had a flat tire on the way to the treatment center. We tried to fix it with the tire-fixing spray can, but the damage was too great for that. Finally we just proceeded cautiously the rest of the way to the treatment center. I went in for my appointment, and Anand contacted a mobile tire fixer. The person came very promptly, and the whole episode ended up as less of a disaster than I feared. I was very glad, though, that I was not alone trying to deal with that and treatment at the same time. I wasn't even late for my appointment.

They were late for me, though. I had to wait for over an hour before they called me in. Then, when it got to the point when they were actually going to shoot the protons into me, something went wrong with the machine. They kept telling me to hold my breath but then telling me I could stop holding it just a few seconds later. This went on for some time. I lay there wondering whether this was some special treatment for the final round or whether the machine was broken and they were about to tell me I had to come back the next day and try again. Finally, much to my relief, the machine worked, and I was done.

So I got to ring the bell. I'll admit I felt a bit different ringing this bell than I did ringing the one after chemo last year. Completing a second course of treatment like this drives home the persistence of mesothelioma. I'm finished with this treatment, but I'm not finished with the disease.

Ringing the bell

For now, though, no more breathing through a snorkel while lying motionless in a machine! No more malaise-inducing radiation! I may well have fatigue for the next few weeks, but I can handle that. After a while (I'm really not sure how long—the radiation has to finish its work first), I'll get a scan and we'll see how well the protons did their job.

Over Halfway!

I am now over halfway through my course of proton radiation. I am so much looking forward to having it over! Today's session was uneventful, but I have to confess that I really don't like getting the treatment. I have to breathe through a "respiratory gating system" that involves having my nose pinched off and breathing through a snorkel-style mouthpiece while lying motionless. I hate to have things in my face that interfere with my breathing. There's a reason I never go snorkeling! But it's all in a good cause, and I only have four more treatments to go,

Here is a picture of the apparatus. When I actually get the treatment the cot rotates ninety degrees to situate me under the machine. The blue thing under the sheet at the head of the cot is a personalized head and armrest made to my specific measurements.

The proton beam apparatus

Meanwhile, the feline Proton continues to bring solace and amusement as well as danger to the houseplants.

Proton with a houseplant in his sights

Yet Another Delay

Proton therapy depends crucially on accurate targeting. Planning the targeting is a lot of work, with the result that I've had yet another treatment delay. On Wednesday after my treatment I had an appointment with my radiation oncologist. He said that the scan I had on Tuesday showed further growth. Probably not cancerous growth, he was quick to reassure me, but more likely swelling from inflammation. That is not necessarily a bad thing, as it means my immune system is getting involved to fight the cancer. But it means that he had to recalculate my treatment plan so as to target the tumor in its new size. So I had yesterday off of treatment while the recalculation was happening. I was relieved not to have to undergo treatment that day, but unfortunately it means I just have to go in for a make-up treatment at the end. The doctor was also thinking of switching me to an every-other-day schedule, given how large a dose of radiation I'm getting (it turns out this is in fact quite large) and the fact that the first few doses made me sick. I've been OK since, though, so hopefully I can just get the treatments and be done with it. After this afternoon's treatment I should be half finished.

I am continually amazed at what a balance the proton center maintains between assembly-line treatment to get as many patients treated as efficiently as possible and highly individualized treatment that is tailored to each person's tumor, constitution, and body shape. It's impressive.

Win Some, Lose Some

I was originally scheduled to get proton treatment every day this week, but I had to cancel Monday because I was feeling sick. The fact that I got sick after two treatments had me worrying that the protons were going to make me sicker and sicker as the treatment schedule went on—and then how would I manage to continue treatment? Maybe, I thought, it would have been better to get surgery.

Luckily, I have since been recovering, and I was able to go in yesterday for my treatment just fine. I even think I feel a shrinkage in the tumor now, since it's not hurting so much when I take a deep breath. That pain first got worse, starting on Saturday, but it is now receding as of this morning. I think it may already be better than before I started the proton treatment.

Because of missing a treatment, I now have an extra treatment tacked on at the end. So on the present schedule I'll be done next Thursday. I can't wait to have it over!

In other news, kitten Proton was a star at the vet's office this morning, where he went for his vaccination. Despite getting stuck with a needle, he charmed everyone there.

Proton: a winsome little star

In yet other news, the Mesothelioma Applied Research Foundation has just announced that it was able to make $850,000 worth of grants this year for research and clinical trials on mesothelioma. That is almost three times as much as they were able to award last year. Some of that is thanks to readers of this blog who have given to the Foundation. Thank you all so very much! The link to give to my fundraising page is here. These are exciting days for cancer research.