A Change Of Plans That Changes Me

Every once in a while, as a cancer patient, you have a really not so good experience at the cancer center you are being treated at. Unfortunately, today was mine.

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.

My poor arm was wrapped in pink and black tape from all of the pricks. It hurt and I wasn't so happy. Ebony then proceeds to tell me that my new doctor wants to reschedule my appointment. Excuse me? I have now been there well over two hours, I am bleeding through the stupid tape and now I am being told I need to go home and we will do the whole thing over next week. Don't think so. Why? A scheduling error. I was mistakenly booked for a 15-minute appointment rather than a one-hour consultation. A mistake was made. Deep breath. Ebony wants me to have a seat in an office because she feels so bad and wants the nurse manager to speak to me. I am seated in a small room that looks out a wall. I feel isolated (I am isolated!), frustrated and vulnerable. I am thinking that I don't like the way this has transpired, a really bad start to hopefully a long relationship. I actually am on the brink of tears as I think of how much this appointment has been on my mind and how long I had already invested in the day, and I was just being brushed off...or out. I took a couple of deep breaths and regrouped.

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

Races and Recollections

On this rainy Sunday, with yesterday's Race For The Cure fresh in my mind, I spent a good chunk of the afternoon going through a thick file in the bottom of my filing cabinet that I never bothered to label. There was never a need to make a name for it; how do you come up with one word to describe the paper trail of the highlights and lowlights of almost one-third of one's life? It's memories of my earliest days of having cancer and then the reoccurrences. It's always just been a nameless file... until now.

As I covered my kitchen table with bib numbers from races run, rough drafts of speeches given, torn out journal entries and pictures, my file transformed into something else for me. It has become my visual outline for my book. I have been stuck with my writing. Trying to decide which route to go, how deep to delve, which angle to pursue. But finally (emphasis on finally), going through the file and seeing, touching and remembering, I started to see the path I need to take.

I haven't been back through this file in a long time. It's made it's way from first in line in the top shelf of my file cabinet, all the way to the back of the second drawer, occupying a good half of it. It has slowly been pushed back by additions of my most current life; high school and college info, certifications, pet stuff, you name it. When anyone needs something I always point to the top drawer. If we ever had to get out due to fire or something, the whole drawer comes out first.

But today, as I quietly celebrate 18 years of life since my original diagnosis on June 5, 1998, I am somewhat compelled to get the file out and go through it. In the past, I have had to be in just the right mood to go through it. There is so much there. The raw emotions in my original handwriting of speeches that I have given to different groups. Some right after the first diagnosis, ripe with hope and courage. Some after the first metastasis tinged with disbelief and vulnerability. And then very few after the second metastasis; I didn't need notes anymore, it had become my life. And then there is a part of me that no longer exists because of my disease...the athlete.

I describe myself as being athletic when I was young. I always loved to play kickball and softball with the neighborhood kids. I loved field day and was quite competitive, always taking it very seriously. To this day, I love watching sports of all kind, especially my kid's. When we moved to West Hartford, I was hijacked by my friend Audrey to play women's soccer. I adored the camaraderie but was definitely not an "A" player. I had to stop playing when my port was put in. My teammates were so wonderful, that they had pink ribbons embroidered onto their jerseys; a gesture that still can make me misty eyed. But, due to cancer, I developed a new passion and that was running.

When I was newly diagnosed and was in the waiting room at St. Francis Cancer Center, I picked up a book by Nancy Brinker about her sister Susie Komen and her life-ending battle with breast cancer. It described the promise that Nancy made to Susie to try to find a cure, thus beginning the Susan G. Komen Race For the Cure. I asked my nurse about the race and she said that there was one in Connecticut each year and that I should so that I could meet other young survivors. A few months later, I went to the Race with carrying Torrie in a frontpack. I was amazed at all of the festivities, the runners, the walkers and, especially, all of the survivors. I made myself a promise that I would come back the following year and participate in the walk. At that time, I never even entertained the idea of running a 5k race. I was NOT a runner.

Going back through my file today, I found journal notes from April 5, 2000 "I decided early this morning to walk. Must quit waiting for cancer to come back (my 1st premonition?) and get back to real life - and FIT. Had Ken drop Torrie and I off at school For Young Children with jog stroller. Walked home. 4 miles; beautiful morning. Felt great. Took an hour". April 25, 2000 "2.5-mile run/walk. Am now running more than walking! Need to buy running shoes." And finally, Wednesday, April 26, 2000 "Have planned all along to walk the Race For the Cure. While doing my 2-mile run/walk (Albany to Main to Asylum) - decided to RUN the Race For the Cure! I'm so excited! I have 17 days until the Race. Just want to complete it. Got new shoes." The running bug had bitten me.

More daily entries with further distances. I love reading back and feeling the excitement build to Race Day. It was finally here - May 13, 2000 "RACE DAY!! Woke up at 5:15 a.m to thunder and pouring rain, ugh. On my way to Survivor's Breakfast radio actually mentioned race may be canceled. Got to park and rivers were flowing down the sidewalk. I was prepared enough to bring my flip flops so I could preserve my shoes and socks. My feet were freezing, though! Had to pee and missed survivors photo. Also missed hearing my name be called to represent CT in Washington at the National Race! Was so excited when I found out that I started to cry! Ken finally showed up with kids - he was so excited for me. Went to starting line area (rain finally stopped, skies cleared up) made my way to front 1/3. Got very emotional - I can't believe I'm running this race! Ken and kids gave me a thumbs up, the horn blew and we were off! It was tight going at first through the park, had to find a space and my pace. Was proud of myself for not getting too caught up with the people around me and their pace. The park was packed with people clapping and cheering. There weren't many pink shirts around me so I got a lot of cheering. Saw Ken and the kids at around 1 mile and felt great. I ran out of the park and continued to feel super. Started passing people at 2 miles! Came upon the BIG HILL. A group around me started talking it up 'heads down, arms pumping, don't walk.'! I made it! Yahoo! Breezed into the park to people clapping and yelling. Had energy left and started to sprint. The announcer yelled 'here comes a pink shirt' and I started clapping and waving. I sprinted the small last hill and saw Ken and the clock all at one. I saw I was going to break 30:00 and I was ecstatic! Time: 29:25! It was an incredible moment. I am a RUNNER!" What a great memory for me.

That race inspired me to keep running. I ran many more 5k's, a 10-mile race, a 20k race, a 1/2 marathon and, unbelievably, seven months after completing my first race, I completed the Walt Disney World Marathon. I had become an ATHLETE. But just a few months later, my cancer returned and running came to a halt.

As my disease progressed, accompanied by all of it's surgeries, complications, and treatments; running turned into walking. And now, as I gratefully sit here 18 years later, I have come to another realization: I am still an athlete. You must be one to endure and live with this disease.

I am still running the Race and the name of my blog is changing; it is now "Eighteen Years Of Pink".

Namaste.
Kim