Kae's Adventures: The First Week

On a few occasions I have wondered how I would react if given the news that I had cancer. Now I know.

A week ago Friday morning I received that news that no one ever wants to hear. I made the call to my doctor sitting outside in a public space at Tacoma Community College, where I was attending a conference. It was a beautiful, slightly cool day with a sunny blue sky—a day to savor. After she informed me that the previous day’s biopsy had shown that I had uterine cancer and that I was to get in immediately to see a gynecologist, I closed my cell phone, I said a couple of hearty “damns” to myself (after all, you’re not going to shout in a public space), followed by “how could you do this to me after all I’ve done to take care of you?” to my body. I then took a few minutes to look at the sky and decided to get on with it. Which at that moment meant going to the rest of the day’s conference sessions, and in between making calls to set up an appointment with a gynecologist at Group Health who would tell me more about my diagnosis and plan of treatment.

This past week has been an incredible flurry of learning, thinking, emotional ups and downs, troubled sleep, and discovery of all the resources and friends I have to help me. I met with a friend who has also gone through cancer to learn about her diet-related activities. I pulled all kinds of information off the internet, quickly discovering that it was going to be easy to be both overwhelmed by the amount available and pulled in many directions by conflicting opinions. I alternated between feeling organized, prepared and optimistic and frantic, ignorant and unsure. I did not think much about dying. I focused mostly on what my options would be, how quickly I’d be able to recover, what treatments I might be asked to undergo and how hard I might have to fight to use a combination of western medical and naturopathic approaches.

In the first couple days, I shared my news with just a few people, people I thought might be able to lead me to resources. And they did. I also quickly discovered that nearly everyone I talked to had a very useful piece of information for me—as well as unqualified support. I am extremely fortunate to be in Seattle, center of nationally recognized medical expertise and research as well as naturopathic and holistic approaches. What is not so good is that there is still not much integration of these resources—you are mostly on your own to pull it together. Which takes both energy and time along with determination.

It was a week of discovering many synchronicities too. One of my rowing buddies is a surgical nurse at UW. She cleared the way for me to get a second opinion from a nationally known surgeon there. A former Fielding classmate is a breast cancer surgeon, and highly recommended a group of specialists working with Swedish. On Monday morning I found out that because Group Health, my primary health care provider, is backed up, I was being referred to that very same group for my surgery. A Chinese Medicine and acupuncture specialist my surgeon friend recommended turned out to have her practice two blocks from my house.

The hardest parts of the week were telling Phil, Guy, and Shana. The best parts of the week were receiving the love and support from everyone I shared my news with, along with finding that I would be working with some excellent surgeons.

One of the tough parts of the process is to be aggressive about getting what you want: pushing the 2nd opinion referral through, opting out of the 1st physician I was scheduled to see at the specialists because he didn’t know how to do the robot-assisted surgery that I want to be evaluated for, navigating between the desires for fairly comprehensive records expressed by the Chinese medicine specialist and the insistence of the Group Health nurse that an acupuncturist didn’t need to know that much. I really don’t enjoy that, so have to push myself each time to do it. And it appears there will be lots of little battles to be fought. And lots to learn about how to make the system work for you.

It’s also hard to figure out how to tell people the news. What’s an introductory line that lets them know something negative is coming, but doesn’t blast them away? Do I have bad news, upsetting news, disturbing news, or unhappy news? Do I feel more comfortable saying “I have cancer” or “I have been diagnosed with cancer?” Does it even matter?

It is hard having say it over and over to different people, and challenging to keep yourself together when others fall apart. Maybe falling apart isn’t such a bad idea for me to either, but I haven’t cried yet. I also haven’t wanted to punch out anyone or anything. Perhaps that will come later. I do think I am going through the grief stages, the first of which is denial, and a bit of shock. There’s more than a good bit of that at play.

Then there are the logistics of figuring out who to tell and when. Do I tell Shana before or after her exams? (after, I decided). Do I tell my parents before or after my stepmother’s big 90th birthday part celebration next week? (after, I’m thinking—no need to spoil the party.) I have realized two things. I am going to need to have Phil share the burden—I am simply not going to have the emotional energy to say my news over and over again, and deal with the reactions.

About Thursday, after telling several people, and already having some of them check back in with me to see how things were going, I also realized that keeping people up to date is going to be a significant task and energy drain—hence, the idea to start a blog. The reactions have been funny. Both my kids were there before I mentioned it, and think it’s a terrific idea. Many of my friends from my generation with whom I’ve shared the idea look at me like I might be a bit daft, though some think it should work. We shall see.

So here I am at the end of week 1, with several things in place:

1. I have appointments next week to see the surgeon, the specialist at the UW for a 2nd opinion, and the Chinese medicine specialist.

2. I have shared the news with my WELA Board, to whom I report for the leadership program, and the THS board, where I volunteer, so they both know why my work will be impacted. I also shared it with my Spanish instructor, as he was ready to schedule my next lesson. So the major outside commitments are on board.

3. My immediate family and a few of my friends know, and are providing wonderful support.

4. I know the primary remaining “vacancy” in my treatment team is a naturopath, and hope to get settled this weekend on who to approach. I also got some help from one person on how best to coordinate the work of that team.

5. I am still rowing, going to Tango and Spanish lessons, walking, working out and doing yoga. I did have to curtail the amount I did a couple days when I had gotten very little sleep and was pretty tired. I am also getting a few things related to WELA and THS done.

6. As far as I know, I am still going to be able to put off the surgery for a week so I can go to California and celebrate Dene’s birthday on March 22nd. I’ll know more on Monday after I see the surgeon. The Group Health gynecologist didn’t think a week would make that much difference, and it means a lot to me to be with the family, especially now.

7. I think I am beginning to settle down and sleep better. I suspect that ability may still go up and down as I go through next week, but I really want to be well rested for the surgery.

In a short week I have begun to experience what an incredible journey it is to be diagnosed with cancer. I can also see that there is some significant learning for me that will come out of this--about love, friends and life.

More posts to come as I have significant news to share. So to close this extended first posting, here are a couple of pictures that show what I plan to get back to: catching crab on our sailboat and rowing.