Cancer on Trial
by Cindy Eastman & Annie Musso
Note: Annie and I wrote a series of articles together called, “Can We Talk About Cancer?” for Hearst CTInsider. This was our last one together which we submitted, but was never published. I am sharing it because it emphasizes how strongly Annie felt about doing work that would help others. Links to all our articles are below.
Cindy: Every time I refer to “Annie’s trial” it sounds like I’m talking about how you’re having to go to court. Like you were caught embezzling or left the scene of a crime or something. The thing I have to remember about a trial is that it’s research--you’ve agreed to act as a guinea pig (and now I need to find a better word for that) so it might not work, but you still have to be at the researcher’s beck and call so they can gather the information they need. I also needed to educate myself a little bit--at first I was so worried you’d be in the “placebo” group, until you confirmed that there’s no such thing in Phase 1 cancer trials. Everyone gets all the medicine.
Annie: This summer I also went on temporary medical leave from work (partly to be able to do things like clinical trials) so when I shared with a friend that I had started my trial they very sweetly became quickly indignant on my behalf, “You finally take time off for YOU and you end up on a jury trial!?” I suppose “clinical” is an important part of my description. And even though I am on medical leave from my job, when you’re on a clinical trial it can still feel like you’re working, going into the office, taking notes and commuting.
Cindy: It’s like you’re a paralegal! But not getting paid to be one. Which is a consideration when cancer and cancer trials take over your life--the loss or impact to income. But I’m really glad that you were able to take the time you need to focus on what’s most important--your health. And there’s another consideration when you enter a trial--you’re subject to all the physical responses that this particular medication might trigger--which is what the researchers are looking for, I suppose. Your weird--but historically expected--atypical reactions to some of the earlier medications are, in a way, what got you to this place to begin with.
Annie: I did share with my APRN in the first week after a myriad of side effects that if we are going to discover any new types of reactions to this medicine, I’m the girl for it. My body has reacted a little differently after each treatment so far. Sometimes it’s the premeds (medications they give prior to chemotherapy to help with reactions/side effects) and some may be from the chemo itself. Sometimes it’s something altogether unrelated except for the fact that your body is already worn down and perhaps more susceptible to things ...like where did that UTI even come from? But it all goes in the notes: Are you constipated, nauseous, having diarrhea? Are you exhausted or do you have energy? And are you just exhausted because your body is processing this crazy cocktail or have your white blood cell levels dipped too low?
Cindy: Add “sharing every bodily function with strangers” to the impact of clinical trials. What if you’re just wrung out because it’s 4 PM and you’ve been up since 6 AM driving over an hour to the treatment facility, then back again in time to pick up Luca and let the dog out, but not before stopping to get yet another prescription, and then (thank you brain fog) back out to the store to get something for dinner before getting Luca to soccer practice. How can you feel anything but exhausted?
Annie: I don’t know if exciting is the right word for it, but it can feel good to be a part of this trial. What if this one is THE ONE? What if it ends up helping millions of people? What if I am one of the first people to try this drug and my feedback helps to inform what the possible reactions are and how bodies will respond? The always eager to please employee/student/daughter part of me is really up for that task.
Since becoming Stage 4 I have told myself that I will do all things possible to heal (and I’m talking ALL OF THE THINGS…looking at you, moon water), but I’m going to need science to do some heavy lifting as well. There is a lot of research being done for cancer in its many stages and types, but often the focus is on the early stages. For breast cancer alone “only an estimated 2-5% of the funds raised for breast cancer research is spent on studies of metastasis.”1 Yes, read that again. Add to that being in a small, aggressive subtype of breast cancer (triple negative) and it can be even less. That’s why clinical trial participation and reporting is so important and why I’m happy that this can be my part-time job right now.
Cindy: I’m not crazy about the fact that you’re the one that has to go through all of this in order to pave the way for the countless women (and sometimes men) who will eventually join you in this fight, but I totally understand that you feel positive about it. It’s the way you’ve been since you were diagnosed…taking all of it on with almost otherworldly calm and pragmatism. And I feel the same way about these conversations we’re having--let’s raise that 2-5% to 20-50%--at least. And if that’s your job right now, then I am going to do whatever I can to support you in it. Even without the income.
Can We Talk About Cancer (originally appeared at Hearst CTInsider)
Cindy Eastman & Annie Musso
Dec. 17, 2022 - Can We Talk About Cancer? https://www.ctinsider.com/opinion/article/Opinion-My-daughter-has-cancer-And-we-want-to-17659433.php
Jan. 7, 2023 - Are We Making Resolutions? https://www.ctinsider.com/opinion/article/Opinion-Can-we-talk-about-cancer-If-I-want-to-17697860.php
Feb. 11, 2023 – Making Moves—Even When You’re Stage 4 https://www.ctpost.com/opinion/article/talk-cancer-opinion-making-moves-even-17776160.php
March 19, 2023 - The title is misleading on this one...we called it, "Talking About Bruno" - https://www.ctpost.com/opinion/article/opinion-helping-kids-deal-death-pets-17845133.php
May 6, 2023 - The Kindness of Everyone
https://www.ctpost.com/opinion/article/opinion-the-kindness-everyone-18081278.php
August 11, 2023 - 525,600 Minutes
https://www.ctinsider.com/opinion/article/opinion-measure-years-love-rather-pain-18291383.php
Source: https://www.metavivor.org/research/
So powerful, Cindy! You bring so much wisdom to the table shared by your daughter. Thank you!
All the talking that you and Annie shared with each other (and with others) about anything and everything is worth its weight in gold. It’s priceless. I know you treasure it. Thinking of you always. 😍