Happy Thanksgiving, ya’ll! Hope you spent time doing something that makes you happy to be a human living on this planet. Family, friends, food, fabric, 500, whatever f-word floats your gratitude boat. I am mostly thankful for all the amazing people, near and far, that have supported me over the last 11 months. I think that needs to be a whole post all on it’s own, yo, so I’ll start working on it. Other honorable mentions include yoga, Starbuck’s grande decaf two scoop chili mocha (my last sugar hold out), kitties, Shameless, Squatty Potty, the Bloggess, sleep, Madison, heated blankets, nature, soup, libraries, creativity, science, and laughter…so many more, my heart is full in many ways ❤
I’ve had more than a dozen medical appointments in the weeks following the return from my journey south. In addition to a host of appointments at Froedtert Hospital in Milwaukee, there was the occupational therapist (tennis elbow on the left side, likely holdover from cording that occurred following mastectomy and lymph node dissection), physical therapist (left lower back pain, plus my left hip is acting up again), acupuncturist (helping with any/all maladies currently occurring, physical and mental), head doctors (one therapist, one psychiatrist), dentist (felt weird but good to have an appointment unrelated to cancer or the fallout from associated treatments), sleep doctor (who referred me to an insomnia specialist that does cognitive behavior therapy…she’s booked out for almost three months…insomnia ain’t no joke these days, folks!), patient navigator at UW Hospital (juggling all the correspondence between docs, nurses, researchers, and my insurance provider, at multiple different clinics/hospitals, was just getting out of hand for me – spending good chunks of my day on the phone or emailing back and forth, back and forth…cancer a full time job? TRUTH). I finally demanded a case manager through GHC and got one! Nancy is the bomb diggity and reducing my stress level significantly.
As for the clinical trial @ Froedtert, I had an echocardiogram and EKG followed by the first official office visit with the oncologist, Dr. Chitambar. I got a call back a few days later from the research nurse saying that my left ventricular ejection fraction (LVEF – more new terms to learn!) was below normal (running 46-49%, normal is 50-70%, I was 60% back in June after chemo just prior to surgery). It’s basically a measurement of the volume of blood the left ventricle is pushing out with each beat, a sort of measure of efficiency and muscle strength. My values were displaying borderline heart failure (sounds scarier than it is). 50% was the absolute minimum LVEF I needed to meet in order to be involved in the study 😦 However, since it had been so good back in June (even after the cardio-toxic doxorubicin chemo I was on…thanks to Kevin for pushing the CoQ-10!), they figured the low volume ejection fraction was a result of cardiac damage incurred during radiation (cancer, it’s the gift that just keeps givin’!). They elected to schedule another echo a week and a half later to see if there was any improvement. A few days before that second echo, I happened to be talking with my psychiatrist (first time meeting…a two month wait to get in to see her…at this point I think Maggie really needs to reconsider going into the mental health field with the obvious shortage of practitioners) and I told her that my heart rate has increasingly been on the high side for several weeks. We took a look at my Fitbit HR tracking graphs and there was indeed a steady upward trend beginning on October 19th when I had started one of my anti-depressants (nortriptyline) and continuing on to the day in question. We elected to stop that drug and…drumroll please…my resting HR dropped 16 beats per minute over the course of ONE FRIGGIN’ WEEK. The increased HR could have had an effect on my ventricular ejection rate, as well (basically, my heart was all like, “Hey, I don’t need to pump so hard if I’m pumping more often…” Lazy bitch!). When I went in for the repeat echo last Tuesday I squeaked by with a very respectable 51%, so I’m back on the study 🙂 Fitbit, here to save the day!
Yippee, all that hard work, the run around with insurance and multiple oncologists and nurses, the trips to Milwaukee, worrying about my ticker, it was all working out and now I have another chance at chemo…hip, hip, hooray! Wait, crap. CRAP, more chemo…and right before Christmas!?! I feel like I had been so focused on getting on the study that the idea of more chemo never really and truly sunk in. I mean, I knew but I didn’t KNOW, you know? The day after I got the results, it hit me like a frickin’ brick, though. One of the handful of times I’ve had an honest to goodness panic attack…felt like I was breathing through a straw, heart was beating out of my chest and thoughts racing a mile a minute…luckily it happened while I was walking to yoga class, so the rhythm of putting one foot in front of the other, focusing on regulating my breath, and arriving at my mat helped to calm things down again.
The mental roller coaster has returned over the last few days. I’m thankful for the opportunity to get directed therapy if they find genetic markers that match my tumor. That seems worth going through the shit show all over again, and I know there are others out there that don’t have access to the kind of medical care I ‘enjoy’ that would jump at the chance to participate in this study. Yet my emotions are scattered and the blues are working their way back in slowly but surely. No doubt in part because I’m not currently taking an anti-depressant after quitting the nortriptyline (she’s off her meds, folks!), but there are other factors. The holidays are always a little stressful, winter is coming(!) and seeing all the brown where there once was green is disheartening, but I think the biggest factor is that my small window of normalcy is likely closing once again. I was enjoying a return to day-to-day routines, a schedule (relatively) free of medical appointments, SLEEPING, spending less time worrying about cancer, enjoying hobbies/friends/outings (and the occasional beer…yaaaassss!), wanting to cook healthy meals again, feeling stable and content for long stretches of time. And the dog. I was ready. Thought it was finally time. I was *this* close. Now things are up in the air again. Feeling like I cannot take on that responsibility right now, wouldn’t be fair to me or the pooch when there’s more uncertainty on the horizon. And for this, the tears have come again and again over the last couple of days. I feel like being ready for a canine companion is the final measure of being able to return to a ‘normal’ life. The dog days will come, I know, but not today, even though I want so very much to be ready… Until then, I guess I’ll be grateful for the other regular snugglers on my couch, human and feline 😉
If you’ve actually read through to the end of this post, I’m extra thankful for you ❤