Jazzy Girl

2

Back to the world of blogging.  I missed putting my thoughts out there into the universe in the hopes of helping me continue to make sense of my life, my diagnosis, and the new way in which I am forever forced to look at things.  

But I have been remiss in writing because I was just in the hospital for the last 8 days.  I had an amazing time down in Austin visiting my bestie and her family, but while there I began to feel increasingly more sick, and by the time I flew home, I knew that something just wasn’t quite right.  I woke up the next day achy and nauseous (thankfully nausea has never been a big side-effect of my treatments thus far), and could not keep any food or water down.  I spoke to the nurse in my doctor’s office that morning who immediately scheduled me for an outpatient colonoscopy (they had been afraid that my treatments could possibly be causing colitis). My Mom came over when SHL went to work and going through a list of foods, she tried to find things that I could possibly eat, popsicles, broth, crackers, but after throwing up nothing and barely being able to get off of the couch, I became increasingly worried that I was going to get even more dehydrated prepping for this colonoscopy at home.  The next day I called the nurse back, and this is the best example of being your own advocate, told her that I knew that something wasn’t right, and that perhaps we needed a different plan.  Thankfully she listened, and my team immediately agreed that I needed to go inpatient to the hospital.  I was less than thrilled with this idea, but I was also a little bit relieved, wondering how I could ever manage these symptoms at home myself.  

I arrived at Brigham and Women’s Hospital to find that not only would I have my own room, but that I was on a special floor reserved only for Dana Farber Cancer patients, and most of those patients have melanoma. Therefore, and this is more huge than you can even imagine, both the nurses and the physician assistants were completely aware of my treatment, whereas if I had gone to any other local hospital they may not have had a clue as to what my treatment even really has been. In this case, they have seen countless patients getting the exact same kind of care that I am, so they are familiar with the drug, the side effects, and the treatment plans.

They quickly got me going with fluids and lots of potassium; my levels were so low that they needed to monitor my heart and found that when I got up from the bed my heart rate doubled every time. The bag of potassium burned through my veins so badly that one night I practically pulled the IV from my arm, probably waking up every single patient on the floor, screaming in pain. After that they did the more humane thing and let me drink most of my potassium with juice, which was pretty gross, but so much better than the burning. PA’s and nurses came in and out almost constantly, it seemed, monitoring my vitals and taking blood. The first night in the hospital, as my Mom and SHL and I watched Game 6 of the World Series, I prepped for my colonoscopy (which was not as bad as I had heard it could be). It was a long night with about 2 hours of sleep, but I lucked out, and in the morning they took me immediately for the colonoscopy (they had said that I could potentially have to wait all day for the test). I had been on only clear liquids up until that point for the past 4 days. I spent the rest of the day weak and exhausted, lying in my hospital bed, until they came to tell me that they didn’t even need to get the biopsies back to see that I have treatment-induced colitis. Now colitis is awful as it is, as many of you know, but this quickly became even more loaded to me: Would I be able to finish my 4th and final treatment dose, if I was now diagnosed with colitis? I would soon find out from my oncologist that the answer would be no.

I felt the tears and fear bubble up from a place of dread, but quickly knew that I needed to change my mind-set, and not get stuck in one less dose of treatment than was expected. 3 doses could still be very powerful stuff (I’m told that some people get so sick that they can’t even receive that many), and my body was obviously going into overdrive from the treatment due to the colitis, so why not look at this from the point of view that the cancer cells are being attacked hard as well? I was grateful for the 3 doses and tried to stay in that positive place.

Over the next couple of days they tried to get the colitis under control with steroids, but I rebounded too quickly, so I had to go from an IV form to a pill form to another IV form again, and each time they needed to monitor me for at least 24 hours to see how I did, so the days began to stretch, one into another. My friend Kate came from CT to visit and somehow, 6 hours later, just sitting in a hospital room, my spirits began to lift spending the day with such a good friend, who just let me “be” whevever it was that I needed to be that day. Then I was told that I would need a chest x-ray and a TB shot, just to make sure that I was clear of any kind of infection, in case I needed to start another kind of steroid (there were only 2 choices in the matter, and I was already trying the first one). Another complex point of all of this is that sometimes, when a melanoma patient has to be put onto steroids after this kind of flare-up/side-effect, they can then sometimes be excluded from being eligible to participate in a clinical trial down the road, should they ever need one. So you see, it’s not just about the colitis: It’s also so much about keeping as many options as possible open in the future in case I ever need more treatment. But my team assured me that while some clinical trials may not accept people who have been on steroids, hopefully that would not be the case for all. And truth be told, as silly as it sounds in this day and age and in our country, if you don’t treat colitis, your organs can shut down, and things can become much, much worse. It felt like things were slipping out of my control, though: No 4th dose allowed, and only 2 steroid options to control the colitis, some of which could impact my future treatments. When you have cancer you crave control and time. Instead I turned to what I felt I could control: Meditatation, and keeping a sense of humor.

By this point I had already been in the hospital for 4 days, and it seemed like I may never get out of there. My Mom and SHL took turns taking care of me, each trying to get some rest in between. I never got 1 night of interrupted sleep in the hospital during the 8 nights that I was there. Thankfully towards the end of my stay, as the steroids began to help, I was encouraged and able to get out of bed and go downstairs to the lobby to Au Bon Pain. My eating still hugely restricted, I was still able to enjoy a sandwich and my first sips of iced coffee in months. My Mom and I would go sit out on the brick wall in front of the hospital, soaking up the sun and the cool air, watching people hooked up to their IV’s wandering around, and despite that, it felt like a glimpse of being normal again. Sean and I played Boggle and cards, and watched movies, and I challenged just about everybody that I know to Words With Friends (including my Mom, which was cute). We spent countless hours on our Ipads helping me to decorate my new house, looking at websites and perusing bookshelves and pillows and finding ways to distract myself from the fact that everybody else was busy putting their kids into cute Halloween costumes and getting ready for another autumn weekend while I was, well, not. The nurses joked that my Mom and I were having slumber parties, and at one point we even went down to the gift shop and found me a cute pair of earrings which I immediately donned. The nurses got such a kick out of my earrings paired with my hospital gown that they started calling me “jazzy girl.”

With my fluids and potassium stable, and the colitis seemingly (knock on wood) under control with steroids and other meds at home (5 in total), it’s now time to think about my next scan. This is what I have been dreading since the day that I was told that I have cancer: The scan. I thought that I had more time, thought that I would have my last treatment dose on Wednesday, November 13th, and then wait a few weeks for the scan to see just how much butt I’m kicking in the cancer department. But getting the last dose of my treatment could be deadly with the colitis, so it’s just unfortunately off of the table for now. However they do say that a lot of people have had good success with only 2-3 treatments, and I hold onto this tightly as I imagine the cancer shrinking, and then ultimately disappearing. I think about the last 5 months: Countless doctor’s appointments, 2 MRI’s, 2 liver biopsies, 3 cancer treatments, probably about 15-20 blood draws, 5 IV’s, 8 nights in the hospital, a chest x-ray, a TB test, fluids, vitals, meds. I think about how different my life is from everybody else’s that I know.

Now, we wait for the scan. Now, we pray. We meditate. We look forward. We cherish things that we would normally dismiss, like an iced coffee, taking a nice long warm shower at home, or having the energy to make the bed. Home has never felt sweeter, with SHL and our cats. And we find joy. Not just in those “big” life things– weddings, anniversaries, birthdays, but in EVERYTHING. We don’t wait for the joy to find us. We find it. xoxo

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