Part three in a three-part series
In March, Gloria Casarez, director of LGBT affairs for the Mayor’s Office, was diagnosed with breast cancer. At 37, the out lesbian had no known family history of the disease. Throughout her treatment, she kept a blog, titled “The Word,” to keep friends and family updated on her progress. An excerpt follows. Casarez had her last chemo treatment on Sept. 3 and is undergoing monthly maintenance treatments. For previous entries, go to www.egpn.com and search for “Casarez.”
July 25, 2009
How do I look? …
Well, I’m looking really great actually!
Kicking ass, as is the plan!
We had a kind of hiatus on the blog … one that began after we didn’t get some results we were waiting for. As a result, I was kind of thrown into a sort of medical limbo for a spell — awaiting comparison results from the spine MRI and the full-body PET scan — comparing the baseline tests (done before we started treatment) to that of the end of round three (after nine of 18 sessions — the “midway” point).
These end-of-round three tests would be the first time we’d be able to compare against the baseline tests and are therefore an important and conclusive telling of how we’re doing. So, we waited anxiously for the findings, and … got the sound of … crickets … crickets … crickets … and waited. More on that cumbersome process after the big news (no need to bait you on some promised news, after all).
The big news — in the written words of the pathology report received just yesterday: “The disease is noted to have nearly resolved on the subsequent study.” Now, pathology reports generally do not add exclamation points but I think some are warranted here, don’t you?
!!!
So, what does all that fancy talk mean, you ask? Well, it means that when the tests taken after round three were compared to the baseline tests (done at the end of March), it shows this chemo shit is working. Really well. The disease is nearly resolved in the second round of tests, which means we’re successfully treating my cancer with chemotherapy to the point that we’re “nearly resolved” on chemo alone.
Three weeks or so ago my doctor was able to tell me the cancer has not progressed to any new places and we also found the new tests were barely picking up the known issues in my back and were not showing any more lymph-node involvement, as was the case initially. But, what we didn’t have three weeks ago was a comparison of the two rounds of tests — which began the waiting game and a real-deal lesson of learning how health institutions do not play well with each other.
My doctor and nurse practitioner told me the MRI and PET scan would surely affirm the other encouraging results we’ve been seeing, but I was again haunted by the fact that the tumor-marker test is more of an indicator test — it’s not conclusive. The MRI and PET scans, on the other hand, are conclusive … as conclusive as you can get with cancer, which has its own mind and plan and sneaky tactics it is capable of.
(So, until we received the conclusive and positive news of yesterday, I was cautiously optimistic … and waiting on pins and needles.) The MRI and PET scan are what diagnosed the cancer conclusively and I wanted the comparison against the baseline in my hot little hands. We had to wait a little longer for that and still don’t have all that we could have because the equipment at Penn and Jefferson is different, but it’s good. All of this took the past three weeks — too long. The waiting was not easy. In fact, we waited as long for the comparison finding as we did from the initial date of diagnosis to the start of chemo (a span of three weeks way back when). You can imagine how finally receiving the comparison pathology report was therefore conclusively received with great relief and happiness … “nearly resolved in the subsequent study” — sounds pretty, even.
The tumor markers (indicator tests) have been run again in the several weeks since and have continued to fall even lower than from the last blog entry. We’re now in the range of squarely, firmly, totally normal which is even better than nearly normal. So, I imagine our next round of MRI and PET-scan tests will reflect more of the same and now I think I have a little more confidence in the tumor marker tests than I knew to have before, so I’ll take a little more cheer at the (hopefully positive) result of the next tumor-marker tests … even if they are just indicator tests. What we know is this second batch of conclusive tests says I’m nearly resolved and I like the sound of this kind of resolution. Let’s keep it going!
What was taking so long is stupid. And, it’s a familiar tale of problems with healthcare in America. Jefferson and Penn do not work well together is the best I can surmise. My primary-care physician is through Jefferson so that’s where my initial mammogram, ultrasound, biopsy, and all the baseline tests (MRIs of the breast, spine and pelvis as well as the PET scan, bone biopsy and initial heart test) were all done. They were lovely. They got tests done quickly. I was able to start treatment a few short weeks after diagnosis as opposed to waiting a couple of weeks to get even one of those necessary baseline tests complete. I’m happy with the work Jefferson did. I did not like the personality or slowness of the oncologist I met with, though, which is how I ended up first at a private-practice oncologist and then at Penn — which is all for the good, really. How that all ties in is that after the second round of MRI and PET-scan tests, Penn requested the original films/tests from Jefferson, and waited … more crickets. Penn said Jefferson said they were sending them, so we waited … guess what? … some more damn crickets. That next week, I came in with my copy of the films (’cause my well-informed cousin Bernadette told me at the very beginning of all this to get a copy of all of the films for every test … at every test … and I followed directions). That should have done it, right? I handed Penn the initial tests needed to do the comparison, right? Wrong. Well, seems that my primary physician (at Jefferson) had to approve Penn’s radiologist to do the comparison report. Guess who was on vacation? My primary physician. So we waited. Then, my doctor went out of town, thereby eliminating, for a few days, the most senior person on my team to yell and scream and make things happen. But then she was back and heads rolled (so I’m told) and we got our comparison and we got our comparison findings. It only took three long, hellish weeks where I tried to busy myself with work and other things … hanging on to the indicator findings of the tumor markers.
Even getting the results delivered was not without challenges and incompleteness, though. The initial tests done at Jefferson were administered on equipment that is different than Penn’s, so what I wanted the most I still don’t have. I wanted a quantitative comparison (because I’m a numbers-and-percentages person in general and that extends to this fucking cancer, too). I wanted to know that we reduced by xx percent but that’s not possible until we do another round of tests after round six (18 sessions), which, hurray-hurray, is just around the corner.
The way the pathology comparison report is able to say that my disease is nearly resolved is because that doesn’t need to be compared to the baseline … that just needs to be compared to what’s normal and the threshold for “resolution.” Good stuff.
Oct. 9, 2009
On maintenance (and me) …
We are firmly and officially in maintenance mode!
Actually, we have been in maintenance mode for some time now. The absence from the blog was, in part, me celebrating (yes!) and trying to get back to “life” — or, better yet, refocusing what life is (now) and what life means (to me).
We ended chemo on Sept. 3 and made a beeline to the beach for the Labor Day weekend. Celebrating the labor of this and the lingering days of summer did me and T-love good. Big plans to do this or that while on vacation were quickly replaced with sitting on the beach — all day. For real. It was lovely … and I don’t even like the beach all that much. But the beach with T-love is great and the beach with T-love after completing chemo was the best!
This chemo experience was 18 sessions exactly — just as originally prescribed by Dr. Demichele. No real setbacks except for the anemia at the end of round one and everything else seemed to go as “planned” — no, “planned” doesn’t quite work … everything has gone as projected, though we frequently heard the words “remarkable” and “exceptional” in association with my progress. I will say emphatically that every patient probably hopes their progress can be described as such.
So, none of this life-changing cancer stuff was planned but has moved as projected. A positive outcome was clearly in the cards for this time. A friend mentioned early on that 18 equals “chai” in Hebrew. And, well, chai equals life. It seems it was decidedly so from the beginning that these 18 sessions would give me (new) life — and certainly a new way of looking at life.
Chemo was six courses for a total of 18 sessions (chai) over the course of five months and one day. Five months of fucking chemo — three weeks on, one week off. Four total drip bags each time (the Benedryl, the steroid, the “wonder drug” — Herceptin and Taxol). Combined, they were my life-saving poison. My “life-saving toxic chemicals” as I affectionately refer to them. I’m able to say “five months of fucking chemo” because, in retrospect — it’s a lot. I guess in present — it’s also a lot, but that’s where maintenance comes in.
The big news, in addition to all the “exceptional” and “remarkable” stuff, is that surgery is not needed at this time (note the qualifying language). This was explained as a possibility at the outset but I had prepared myself for chemo, then surgery. I began hording my vacation and sick time accordingly, expecting to need to be out of work for surgery. I began saying goodbye to my breasts in my own private way and on the upswing, I began imagining I’d need a whole new wardrobe because most of my clothes are cut to fit breasts and I wouldn’t have them any longer. A whole new wardrobe would be justified … I’d have to do it, dammit! But, when the chemo did its thing and brought down the inflammation, it was found that surgery wasn’t needed … just “maintenance” and a new phase of hormone therapy.
I’m coming to realize that maintenance means forever. Maintenance means a new way of looking at things and maintenance means that life is forever changed … even with my breasts intact (for now).
But, let’s celebrate a little — the end of chemo showed no need for surgery. No operation!
Upon hearing the “no-surgery” news, I was happy to learn that we were doing so well but hearing “no surgery” didn’t exactly give me great comfort either. I thought, “But, but, but what about the cancer?” It’s still there, is the deadpan response … It’s just not in a cluster per se. So not needing surgery is a whole ’nother mental ballgame for sure, but it is good news. Exceptional news, really.
At its core, no surgery is a reminder that this isn’t as simple as removing a “thing” and moving on. People have said things like this, “Well, you just have to do it and take care of it and be done with it” and such. I don’t believe they mean to speak with such clear or cold finality, but I also can’t really believe that any person who has experienced cancer ever really feels “out of the woods.” They may feel like they escaped from Alcatraz in a sense, but they’re still on the lam. Still on the run. It just might catch up to them. In my case, I don’t let myself dwell or linger too much on the fact that I’m “on the run” (so to speak) — that’s a lot of weight to carry and I really do try to keep my bags packed with positivity. It is what has sustained me in large measure.
For now, I’m happy knowing that my hair gets to grow back.
The end of chemo is really the end of three of those four drip bags. Say goodbye to the weekly Benedryl, steroid and (don’t let the door hit you in the ass on the way out) Taxol. Taxol, with your cell-sweeping powers — you gave me anemia, made my hair fall out and made me feel like a lizard (no eyelashes, hair, etc.). A swift goodbye to you, Taxol … though, if we happen to need to meet again, I’ll approach you kindly. You were relatively kind to me … and, most importantly, you worked.
The present time is about maintenance — staying on it, keeping on it and watching it all very closely … and frequently. Practically speaking, maintenance is Herceptin (once every three weeks) and the start of hormone therapy — in pill form. Maintenance is about targeting my very-estrogen-dependent cancer and slowly starving my body of estrogen (through hormone therapy). Maintenance is induced menopause, which is nothing light for sure but is something I can handle — so far.
Maintenance is moving from weekly treatments to once every three weeks and a shorter visit at the treatment site. Maintenance is knowing that the pill I take each morning is doing a new kind of important work, as important as those four weekly drip bags did. But different. I refer to this maintenance as “chemo lite,” in part because it does require a diligence and mindset in the same way full-on chemo does … it’s just not as dramatic.
Most significantly, maintenance is not just about me. So much of this time has been about “me” (in trying to save my life and all) … but maintenance can’t just be about me. Going through chemo can make a person very selfish — because no one except “the patient” knows what it’s really like to be “the patient.” In my closest relationship (with T) and my interactions and friendships, so much of this time has been about me and maintenance is also about refocusing. Setting the lens back from the extreme closeup to the full landscape. The landscape is such that we’ve been showered with love and support throughout by our loved ones. Really, just bathed in support as we go through this … from strangers and loved ones alike. The support is directed toward the sick person through the crazy time and I’m learning that maintenance is about the whole.
Maintenance (and me) is more than me … it’s us.
And, maintenance is about reintroducing “me” to life … and living.