Typically, a person in treatment for cancer is seen by an oncologist that they have chosen for their care and after discussion of options a plan is set forth for their care. For me, that involves seeing my oncologist once for every three treatments I receive, which comes out to about every three months. On regular treatment days (not being seen by my oncologist), I arrive, have vitals taken by my nurse (she is lovely, her name is Ebony) and then have my infusion. When it is time for me to see my oncologist, I usually have my calendar, my notes and a list of questions that I may have with me. Today was no exception because I was meeting my new oncologist for the first time, as my doctor took a new position in Pennsylvania. Changing oncologists for any reason can be extremely unsettling to cancer patients as they form a unique relationship with their patients because we are together so often. I am one of those who become unsettled.
In eighteen years, I have only had three oncologists. One retired, one I chose to leave and my present is being relocated. Today was my meeting with number four, who my present oncologist hand picked for me. I trusted her judgment with my life, so I trust her judgment in handing over my care. So with only a name of my new doctor in my hand, I ventured off to Smilow this morning to meet her.
I have mentally been preparing for this meeting for the past three weeks since my surgery. I had an agenda. As I have mentioned in my recent blogs since surgery, a wonderful feeling of peace has enveloped me since the operation and keeping that in mind, I wanted to discuss a possible radical option for my care. I have had such tremendous positive results from the changes I have made in my diet, the techniques of meditation I have been practicing, and the combinations of essential oils I have been using, that I really didn't want to alter in any way, the routine I have been following - even for treatment. I want a break. I want peace. I want to stay away from Smilow for a while.
Or a summer.
Metastatic cancer is tricky and deadly. There is no cure. Period. There are only ways to lessen the progression of the disease, hence, my three-week treatments. I have been really lucky that each time my cancer presented itself, it was in a tumor form, a lump. But there is no promise that the next time it wants to present itself that it wouldn't be like a large firework, spreading pieces of cancer everywhere through the bloodstream. Again, that's why I go every third week, the fear of just that.
But since my third occurrence in 2005, my cancer has been very quiet, thank God and Mary, because that was also the year that I went to Lourdes, France looking for my miracle. Could it be I received one, in the form of actually living a LONG life with the disease? I have been thinking so much about this lately. But I wanted to talk to my new doctor about all of this...
So me and my cute pink bag of tools headed out for New Haven this morning for a 10:00 a.m appointment. I was already a bit out of sorts because Ken is always with me when I go down. He carries my cute pink bag and my water bottle in one hand and holds my hand with the other. He lets me focus on the task in front of me and I am extremely grateful for that. But today he was on a mission with Torrie, our new high school graduate (!), to head to Cleveland to stand outside the arena with 15,000 other people to cheer on the Cleveland Cavaliers. My lovable duo of sports fanatics!
I arrived with 10 minutes to spare, checked in and made myself comfortable in the lobby. The minutes passed and then many more minutes passed. Finally, at nearly the hour mark my sweet nurse Ebony signaled me to come back. She apologized profusely for the delay, citing that the departure of my oncologist and rearrangement of a few nurses had really disrupted things at the center for the past few weeks. I said no problem and that I was looking forward to meeting my new doctor. Ebony said that the two doctors had very different styles of practice and one of the differences included me having to have bloodwork before seeing my new doctor. (In the past, it was always drawn at the time of my infusion). I instantly felt a pit in my stomach, because drawing blood on me is no easy task. I can only have blood drawn from my right arm as I had lymph node removal done from my left armpit with my initial cancer, so that arm is off limits to any needle sticks among many things, to help prevent lymphedema. The veins in my right arm are completely ruined from all of the chemo and meds I have had since having emergency open heart surgery due to an infection in my port. Of course, today was no exception. Two phlebotomists, five sticks and thirty minutes later, I arrived back from the lab for my appointment. That was not to be.
I mentally made the effort to change my perspective.
I am the Patient...I am the Customer. My outrageous insurance premium keeps the lights on in this place. Every time I sit down for an infusion, my insurance company is billed over $12,000. I am the boss, you work for me. I started to feel better.
The nurse manager and the nurse that works directly for my new doctor came in offering their apologies for the error. I said that I understood. A mistake was made; mistakes happen. However, I was not going to come back next week. In fact, I had a plan and a message to relay to doc. I wanted them to book my PET scan for mid - July, my six-month mark from my last PET. After results were available, I wanted a one-hour appointment booked with doctor to review and discuss the results and my treatments going forward. I would not be having my treatment today. They looked at each other and understood that I was not going to have it any differently. One of them scurried off to get my appointments set up. I opened the door to leave and walked directly into my doctor.
She looked nothing like I expected. She was not the coiffed, perfectly dressed young doctor I previously had. She dressed very 'free spirited' almost like an ad for organic, all natural, home brewed medicine. Large round glasses and dark black hair (I imagined blonde for some reason). She was stern and serious as she explained how regretful over the whole situation she was. She stated that she knew I was still in recovery from major surgery and that I should have had a totally different experience. Giving me anything less than an hour of her attention would be out right rude of her, she stated. The nurse told her my plan and she completely agreed. Go home, heal, we will talk soon she said as she clasped both of my hands and looked me directly in the eyes. she was very sincere. Something felt right...
So in a few weeks, I will have a PET scan. God willing, there will be no new growth or change. And then I will tell my new doc, Dr. S., that I want my break. Until the end of December. Six whole months.
What happened today was really quite simple: a mistake was made and I was the recipient of it. But it was so much more. Today, I took charge of my disease and of the care that I was going to receive.
I took back my control of an enemy that has been controlling me for over one-third of my life. Even if it's just for a few weeks.
Hopefully, for six months.
Dare I dream longer?
Namaste.
Kim
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