A few weeks ago, my colleague Michael Madden published his blog entry “Ten Years Later and Three Beautiful Daughters,” a detailing account of his ALL leukemia journey, fought right here at Dana-Farber a few years before he became an employee. Since we are team members in the Project Management Office I already knew some of his story, shared two years ago this month while his adorable daughters splashed away in the pool at an annual summer BBQ we both attended. A few weeks before Michael’s blog was posted he shared with me more details of his story, and this time I was in the position of being able to relate in the first person. I had joined the illustrious and unpopular “I have cancer” club.
I can’t recall without consulting my Outlook calendar the exact day in November when I received THE CALL from YC-9 and was given the definitive diagnosis that I was sick. But, just as I can tell you where I was on 9/11 and when the space shuttle Challenger exploded, I can tell you exactly where I was when I answered the oncologist’s call – 10BP parking garage heading up for, and now late to, a new project meeting for inpatient billing.
Much of this journey is a blur to me. Nine months seems so long ago, much less ten years! A lot has happened during this time, for a while at a rapid “we are tackling this hard” pace. My cancer chose to be aggressive so, touché cancer, so would we! More tests were performed and consults heard. Oncologists, Surgical Oncologists, Reconstructive Surgeons, Genetic Counselors, Nutritionists, Social Workers. Looking back, I’m not sure how much I really “heard” and am quite thankful for the notebook faithfully written into by my super-strong wife. The vows we spoke at sunset nearly seven years ago, in the witness of family and friends, at Beacon Hill’s Liberty Hotel have held fast and true:” for better or for worse, in sickness and in health…” Yes, we sure did invoke these vows with this unexpected life event.
Within a month of diagnosis and of affirming an eighteen-month treatment plan, I had an IV access power port inserted just below my right clavicle. No more needle sticks for me – bonus! I somehow managed to inject some humor into the process, entirely unintended. Since I was scheduled to receive chemo on the same day as surgery for the access port, I was post-procedure transported in a wheelchair from Brigham outpatient recovery to DFCI infusion via the connector bridge. I was still feeling woozy from the anesthesia and in a pretty good mood overall. So much so that, somewhere between the connector bridge and the Yawkey elevators I spotted one of DFCI’s desktop technicians with whom I had tangentially worked in the past and decided it was the perfect time to give him a high five. I only remembered this some hours later and I’m sure to this day he has no idea who that patient was or why she did that! Sorry Joellyn, that was me, I hope I didn’t rattle your tech and hope he got a laugh with the Desktop Services team over at the Galleria office space!
After many weeks of chemotherapy, surgery, radiation, and infusion for another eight months to come I can say I’ve managed to insert a little humor here and there, usually when more awake than during that unfortunate wheelchair incident. The humor is more likely in response to treatment-related fears and dislikes, an attempt to minimize the impact of some of the temporary changes I’ve experienced.
1. Unfortunately, for now I am pretty much bald. My hair follicles are randomly pugnacious and many have refused Taxol’s and Adriamycin’s one-two punch. Not to the extent that the change is unnoticed. It’s significant. I figured out quickly that the wig for which I searched high and low, that I HAD to have, was not for me. Nor are 99% of the head-coverings available. They are just not me. Why I think it’s better to just call out my baldness and refer to it as having a Charlie Brown head is beyond me. It’s not even that round. In short, NO ONE thinks this is funny.
2. Adriamycin chemotherapy is…HORRIBLE. There is no way else to say it. I had no preconceived notions going into that phase of treatment. Taxol was not great, nor was Perjeta, but we got through it mostly unscathed and emotionally intact. The nurses assured me everyone was different with how they tolerate each drug and to this day I believe them and would believe them again. I went into Adriamycin day one confident and ready to roll. I’ll repeat: Adriamycin chemotherapy is…VERY HORRIBLE. Not only did it make me feel horrible, worse after each dose, but even how it looks is…what is the word I’m looking for? Yes…HORRIBLE. In five months, nothing impacted my mostly great attitude except this wonderfully effective yet gnarly drug. It’s a viscous red. It looks like Kool Aid. You want me to put that where? In my body?! It doesn’t hang from a bag and drip into your IV line like everything else I’d seen so far. The nurse sits and manually delivers it via syringes – in my case, three big syringes – into your line, it’s that serious. Seeing my attitude waiver after dose #1, the nurse hid the syringes under an opaque towel but I had already seen them. I wasn’t going to forget! I joked to the nurse, “it looks like hummingbird food.” She laughed and the cute hummingbird description made me feel better for about five seconds. Who was I kidding? I was emotionally traumatized, this drug should have PTSD listed as a side effect! Only after my Adriamycin treatments were complete, forever complete, did I learn that it’s referred to as Red Devil Chemo. You can even Google it. Glad I didn’t know. I think going forward someone somewhere will use my hummingbird food description again. I hope it makes someone somewhere laugh.
3. My last regularly used attempt at humor gets a laugh but isn’t funny at all, I’m being dead serious. I came to DFCI as an employee in early 2014, ending a nearly 15-year consulting career that tallied close to a million miles flown and tens of thousands of business miles driven. I could have professionally ended up anywhere. Now I like to (half) joke, “thank God I didn’t go work at Starbucks!” I’ve been grateful to DFCI for the work I get to do each day these last few years; I’m now grateful to DFCI for taking care of me during this very strange journey!
Only half of my treatment plan is complete so I’m not yet done with the radiation, infusions, doctor’s appointments, making bad jokes, and pondering what lies ahead. Some things have changed for me because of this diagnosis and I don’t quite like all the changes. Some are permanent and some will continue to recede over time. Well, except for my hair. Recede would be a bad word. My hair is starting to grown back in! But, the changes, they’re ok. I know what the alternative is. Thankfully, not a lot has been taken from me, nothing I can’t live without, anyway.
Michael Madden sent a warm and compassionate note upon my return from medical leave back in June. It’s not necessary to share its contents. Michael had closed his blog entry with “…stay positive, enjoy every day as a gift…” For me, these words suffice.
Back in the saddle, two months’ post-surgery