Becoming a Non-Patient, Patient
I have been a stage 4 Mantel Cell Lymphoma patient for 2-1/2 years; in cancer speak that really isn’t that long. For the non-patient however, hearing that someone has treated for over two years may sound inconceivable, but for us, it is just our new way of life.
For the first 8-months following my diagnosis, I commuted some 3,600 miles round trip to Houston, Texas, to MD Anderson, a world-renowned cancer research hospital. I was enrolled in a clinical trial that would hopefully double my life expectancy from the five-year prognosis to ten years. On Sunday afternoons I would jump on an airplane and return home usually Monday evening or Tuesday morning following treatment. I took four lethal looking, unmarked, gray chemotherapy pills every day and then had immunosuppressant infusions every week for five weeks then once per month for the next 7 months.
I then spent an additional four months in and out of my local hospital receiving standard of care chemotherapy. My chemo, the “nuclear bomb” as my doctor referred to it, required me to remain hospitalized from Monday morning through Friday evening or Saturday morning. I would receive multiple different drugs and other life saving products of blood, platelets, iron or magnesium, infused through my port during my stay.
I would ultimately spend over 5 weeks in the hospital between receiving my chemo and treating its side effects, sepsis being the most severe. I had by this time, become a professional patient.
I knew every nurse on the oncology floor of 4 South; their name, their significant other’s name, their dog’s name. I walked miles and miles along the hallways of the floor, being unable to leave to go outside while hooked up to my chemo tree. I had become friends with many of the other regulars on the floor and knew the counselors, chaplains and house keeping staff. I even knew some of the workers from the cafeteria and would sometimes receive get well notes written by them on the receipt of my food tray.
During this time, I had been treated by providers from radiology, pathology, pharmacy, local oncology and specialists. I had a gastroenterologist on my team, a gynecologist a hematology oncologist, an ENT doctor, a counselor, social worker and numerous members of ancillary support, including massage therapists and rehab personnel. There were weeks where I would have three to five appointments. I knew the administrative personnel and the schedulers by voice over the phone and in person. It would not be a stretch to say I was a frequent flyer at my cancer centers, the local one and the one in Houston.
On my last day of treatment on September 9th, exactly one year and eleven days from my initial diagnosis, the last drip of chemo fell into the tube that would course through my veins. I had completed my normal course of treatment and would only require bi-monthly immunosuppressant therapy for the following two years. I was finally done with what I called “the big treatment”. But now what?
There was no celebratory ringing of the “I’m-done-with-chemo” bell (I would never really be done treating, and quite honestly there wasn’t a bell until several months after my last round of traditional chemo), no conversation as to what to expect now or how to navigate the waters of being a patient without relying on the enormous group of people on my team, no handout or pamphlet, no exit interview. The last drop fell and I was literally told, “Ok. You’re done. Go have fun!”
Go have fun? Really? Was that allowed? Did I remember how? Where did I start? What did I need to be concerned about? If I coughed or sneezed more than twice does that mean it’s back and I need to come in for a check up? When would I have another scan to check for continued dormancy? Do I just flick a switch and go back to my normal life? What was normal? HOW DO I DO THIS?
I was an emotional wreck and a physical disaster. I had done nothing for over a year except treat every day in the hopes of saving my life. I had put absolutely every other thing on hold which included anything that did not pertain to my health, my cancer or my treatment. And I had no idea how to get back into my life beyond this.
I would spend the next few months struggling with anxiety and depression, waiting for the shoe to fall and the cancer to show again. I wasn’t sleeping and when I did I would wake up with night sweats – that’s a sign of lymphoma, was it back? I had previously been a health food freak who turned into a junk food junkie when I was told, “Eat anything you can just to gain weight.” My team did not like that I had gotten down to 92 pounds. Now, I’m suddenly instructed to, “eat good and healthy foods,” but what does that look like now? Do I have any food restrictions? Buffets okay? Is sushi safe?
I felt like I had finally been paroled after doing a year of hard labor and was simply turned out into society without tools or support – a parolee with no money, no skills, nowhere to live, not even a half-way house where I would be held accountable. Nope, just turned loose – “go have fun.”
I continued seeing my counselor and this was immensely helpful but it would take me quite some time to figure out that my continued fatigue and chronic pain was quite usual for cancer patients following treatment. I had to come to terms with the fog in my brain, the forgetfulness, the social awkwardness and inability to carry a conversation due to the word searching problems. I researched and read, reached out to support groups on line who had my same rare form of this disease, and I talked, a lot. I talked to anyone and everyone that would listen. I would garner little snippets of helpfulness from friends and strangers on how to overcome being a patient and live life again.
I accomplished my goal, I did figure out how to live my life but it was a daunting task fraught with highs and lows and lots of tears.
A support team through my hospital would have been appreciated. Something more than just a second and fourth Wednesday in the basement where an occasional other patient might show up to discuss their issues of going through cancer. I needed help, real, supportive help. And I am sure I am not alone in this.
I could have greatly benefited from handouts and pamphlets, preparatory conversations with counselors on what to anticipate and a real list of things that I should come back and be seen for. Some foresight from my team on the bouts of anxiety and uneasiness that comes from having to shift focus and reintegrate back into work with its strain and tiring days would have been appreciated. Discussions and literature on how to mange finances to pay for treatment would have been helpful. Knowledge on what to expect in trying to return to a sexual relationship would have been extremely good; it would have been nice to know it was okay to have sex and that I probably wouldn’t get an infection that could kill me.
When a patient becomes a non-patient and is turned out after treatment there needs to be some backup to their release. Asking someone to stop thinking and acting like a patient after treatment like I did is simply unrealistic.
I truly love my team and couldn’t ask for better humans to be in my corner. They would never intentionally lead me into a harmful situation and I really don’t think they even know this kind of thing happens. My guess is they just think it is the normal bumpy course that all cancer patients have to learn to navigate. But it doesn’t have to be this difficult.
I would ask that providers work on an after-treatment care plan that encompasses mental, emotional, physical, financial, spiritual, sexual and relational components. Like a parolee who cannot function in society outside of the prison walls and robs a bank just to get back in, we non-patient patients will also flail outside the hospital walls and live a discontent existence as we try to reintegrate into our lives outside of treatment.