First Chemo

I haven't visited this page in more than a week even though this is really the time for updates. The problem is my brain doesn't seem to work on chemo. So, it's begun. Now that I am feeling better, manageable is the word I would use to describe my first round - wholly unpleasant, but manageable. There were moments when I became despondent thinking that I did not want to continue like that until November. Obviously, there is a lot to learn about how I will respond to continued treatment but I need not live in November nor any point between now and then. I'm learning that most of all. In the end I felt less than great for a matter of days, not months. Manageable.

I went in on May 12th as Zebib's (nurse) first patient of the day and left as her last. So, it took a while. There was trouble accessing a vein, a mild reaction to the drugs (forcing them to put the brakes on for a period of time and begin again more slowly), and the delays I imposed by asking too many questions.

Luckily, my time wasn't spent in a facility that met any of my expectations. Because of the dread that is so often associated with chemotherapy I envisioned a sad little room painted institution green, with a series of worn out recliners occupied by some very sick looking people. That place may exist but it is not at Seattle Cancer Care Alliance. I did feel like I was in a medical facility, almost like a hospital, but it was far more private and comfortable than I anticipated. We, like most of the patients there, had a small room to ourselves, tricked out like a standard hospital room with a third the space. Comfortable as it was I couldn't wait to get out of there and head out to yoga for a little normalcy. A nap and some steroids made that possible.

What relaxation looks like now...

Here's Brian, enjoying a respite from all the insane news and intense decisions of the last couple of weeks. Except that there is almost no break from it. We arrived in New York on the red eye, got some more shut eye that morning, and headed into Memorial Sloan Kettering Cancer Care (MSKCC) around midday. It is a beautiful facility, but an absolute zoo compared to the office I came from in Seattle the day before. I'd take it if they could do the job.

The job I wanted done hinged on the question of whether or not I could have one surgery or two. It seemed to me one major abdominal surgery is preferable to two. But, again, what do I know? In talking with different - not to mention very generous and helpful - people, it seemed worth a shot to sit down with whom many consider to be the best in this specialty and get their take. Basically, if these lymph nodes are operable this is the place to go after them. That's what I was counting on and that did not happen. The first words after, "Hello, Kathleen" were "you are not a candidate for surgery". The message was to get back to Seattle immediately and start chemotherapy. If the chemo was effective everything should shrink enough to make a single surgery possible sometime in the next few months. The doc at MSKCC referred me to a colleague at Seattle Cancer Care Alliance. The next opening at SCCA was not until the following week and we made the decision to spend a few days in New York, where there was a considerable bluster in the air, to take our minds off what was to come. The process was about to begin bringing home the realization that I really have cancer. I no longer have to sort through information, or race around finding more opinions, or get to all my tests and appointments. Now I have one appointment with treatment and it's for cancer. Can you believe it?

So, back to what relaxation looks like now. This photo of Brian was taken the day after our trip to MSKCC. We planted ourselves on the beach because we thought we had passed over the time of panic and total confusion into some semblance of calm and order. But that day we learned again that our insurance - which we are scheduled to switch in the coming month - might have grounds to fight us on the basis of a preexisting condition. Nothing like a little stress on top of major stress. While the email that triggered this new possible cataclysm and the phone calls to follow were wholly unpleasant there was something also comical about Brian sitting with the insurance card and some sand between his toes taking names and assurances.

"I just want you to tell me it's going to be alright. Say that." I heard Brian say to the customer service person.

We encourage any readers out there to follow that same refrain. We don't consider it trite.

The Details

Time to clarify some vagaries. Clarity has not been easy to come by over the last few weeks. What is now a new phase of my life began when I discovered a lump in my lower abdomen. I'm young (36), I'm healthy, there is almost no cancer in my family, so I was not overly concerned that this was something terribly serious. Neither were my doctors, initially. I was seen within a week and was told with near certainty that I had uterine fibroids - not great news, but manageable - and rescheduled for an ultrasound in two weeks.

Originally, I thought I was dealing with a food allergy and subsequent constipation. Learning that this was possibly a reproductive issue rather than an impaction or something digestive was concerning but, essentially, no big deal. I had very few symptoms and my naturopath was confident we could shrink the fibroids. My next visit to the gynecologist sent me home in tears. Here are the first four sentences she said to me that day. As she walks in she says, "Any changes since you were here?" She takes a seat near me and continues with, "I was wrong, they are not fibroids. Your ovaries are quite enlarged. It could be malignant." The fifth sentence was, "You need surgery right away".

That fifth sentence was critical. It immediately set up the expectation that surgery was the next step. In most cases that is undoubtedly true. However, my situation would prove to be more complicated than she could have known at the time. She referred me to who she considered to be the best pelvic surgeon in Seattle. They made room for me on their schedule and were charged with the difficult task of confirming that I have stage 3 ovarian cancer. It gets worse. A large area of affected lymph nodes is currently inaccessible.

"This is really bad, isn't it?"

"It's not good."

The surgeon's recommendation was a two stage surgery. The first surgery would remove the large mass in my pelvis, which would include my ovaries and uterus and anything else that looked unsavory. A second surgery would follow chemotherapy and radiation aimed at shrinking this coalescent mass of lymph frightfulness. When you don't know anything about anything, all of this sounds perfectly reasonable. I mean, it sounds horrifying, but reasonable when compared to - let's face it - dying.

Arriving at this decision was not simple, but it was impressively efficient. I had two separate CT scans, a lymph node biopsy, and a PET - CT. Everyone I met along the way was extremely kind and helpful. I had none of the medical hassles and insensitivity I expected. The surgeon and her staff operate an amazing office where you really feel like you are the only one in their care and they are all doing everything possible to return you to perfect health.

After about two weeks of adjusting to the devastating news, multiple tests, assurances that I was in the right hands, and detailed advice I asked my cousin a simple question. I was leaning heavily on his expertise - he is a doctor and the president of a hospital - to guide me through the avalanche of information. I wanted to know if there was a surgical team out there that handled cases like mine and could remove all the cancer at one time. I figured he had the resources to find them if they existed. Except for an eerie experience with a crow, that I will explain later, I felt confident that his research would confirm that I was in the right place. Turns out the damned crow was right. Crows. So off to New York we went for more pelvic exams and a new opinion.

The News

Brian sent me this picture from his bike ride on Mercer Island yesterday. It was taken on day nine of living with the news that I have cancer. Obviously, that information is devastating and difficult to accept. We were told that it had metastasized in inaccessible lymph nodes and appeared to be growing quickly, limiting my treatment options somewhat. The word "inoperable" was used. Shocking. Incredibly, the thought that caused me the most grief was the amount of pain that this disease was about to bring to all the people who care about me. It has become a source of extreme anxiety and sorrow to my parents, my family, friends, and naturally to the person with whom I am walking through this life. In that way, this cancer has spread beyond all reasonable measure.

Luckily, we have purple toilets on the side of the road to ease some of the intensity of the past week. Irreverence has always been a favorite source of entertainment around here. Truth be told, much as I hate to admit it, the day will never come when Brian is beyond appreciating a little potty humor. In a time when we are looking for any sign of hope this must have really spoken to him.

Nervous Days

There are bad days and there are nervous days. As a recent initiate to the latter category, I'm learning that nervous days have a tendency to flood the body with so much adrenaline sleep becomes impossible. Yet, stillness becomes a close companion because what lies ahead is so terrifying any movement seems to beckon an unwelcome future. So now I lie still at night waiting for the sound of the first bird.