The blog stays, I however...

Sharing my thoughts on having cancer and dealing with end of life issues does not mean that I will be as free with information about other people as I am candid about my process. Since I just got some news that would be crucial in the process to anyone one else who may be aided by this blog, I have decided to keep it open.

After my surgery that found tumors on the chest wall and in lymph nodes, a PET scan was taken. It showed some activity on the liver that was verified by an MRI. I know what this means. Once the cancer attacks an organ, it reduces the amount of time you traditionally have to live. I have opted to go into a clinical trial if I qualify as opposed to getting chemo that may kill the cancer in the liver for a while but will never cure it. The clinical trial may produce worse results but on the chance that it may produce better results, I'm giving it a shot. In every single thing I read or watch, cancer that has spread is synonymous with a death sentence. I've done everything I can to get my finances, property, and insurance policies in shape and communicated. I've even cleaned all the closets. However, knowing something and accepting it are two different things.

I find myself getting caught up in a TV movie or memories I relive when I hear a favorite song. After the movie is done or the song is over, I get hit in the face with reality again. The world looks the same as it always has but it no longer includes a place for me. I don't feel sick like I do when I'm in the middle of chemo so what is playing in my head doesn't fit with my sense of reality. I look normal (except for the god-awful scar running across my chest where a breast ought to be). I actually feel good. I have more energy than I have had in a long time. I've been able to get things on my "to do" list done. The house is finished. I still have some things to go through in the garage but overall, I've taken care of most of the things I needed to get done. Now what do I do?

All I have ever known how to do was to get up, pack as much into a day as possible and go to sleep. I habitually have packed too much into every day and was sleep deprived for most of my life. Sleep has always seemed such a waste of time to me. It never helped me to cross anything off of my "to do" list. Now that I can sleep all I want, I don't want to for fear I am wasting some of the precious little time I have left. However, I don't really have anything productive to do with the time I'm awake.

I realized that we all seem to live by trying to deal with whatever is happening today in conjunction with long-term goals. This whole system falls apart when you no longer have any future goals. Organizing stuff, worrying about money and insurance policies, and trying to budget everyday expenses all depend upon how long I will live.  It would be better monetarily to die before next June when my $200,000 policy comes due. If I'm going to die sometime, why not do it as soon as possible to maximize insurance money? I really don't think I would value a few extra months more than I would knowing that John and the kids would be taken care of.  You really don't get any practice in trying to live with no future until it's too late to get good at it. Even lifers in prison develop a plan for the future, even if it has to be a future in prison. What does it mean to make the best of your last few months or years?

This is truly an exercise in living in the moment. The only value today has lies in how today was lived. There is no reward for delayed gratification. If I can meditate, pray, exercise, get outside, go through the mail, keep up on bills, clean something and make love to my husband, I've hit all cylinders. That's a good day. There are certainly other scenarios that also qualify as a good day such as making it to the beach, taking the boat out, visiting family and friends, doing something new or seeing someplace we've never seen before. Sitting around being depressed is not an option.

Nevertheless living in a state where there is no future is truly a strange thing to experience. Part of everyday experience is long-term planning, looking forward to something, expecting to see grandchildren grow and enjoy retirement with someone you love. John and I can do whatever we want now but only for limited periods of time as our schedules are tied to doctor appointments and therapy. We are also restricted by how I feel. 

John has Parkinson's. Before the cancer, I thought about how I could help him get the most out of his immediate future before the Parkinson's limited his physical abilities. Now I see a man, who doesn't even acknowledge he has a serious disease, do all he can to take care of me.  I won't be here to take care of him. I worry a lot about what his future will be.

I simply don't know how to live like this. By the time I learn, I'll have run out of time. I wish I could figure out a way to do research on this time of life. With all of us baby boomers facing death in the next 20 or so years, it would be important research. I could write a book, "How to live without a future," "The Last Blog (parody on The Last Lecture)," "This is it - face it," "Top 10 steps for life while you wait for death," "This is how to live now."  I'd buy any and all of those books from someone who had enough time to figure it out so that I didn't have to waste any of my time figuring it out.

I had to go to the emergency room a couple of weeks ago because of an excruciating pain in my groin. I assumed it was a kidney stone because people describe the pain as worse than labor. It truly was the worst pain I had ever felt. I thought it was an appendicitis, or kidney stone, or part of an IVC filter that had broken off. The PET scan I had taken of my liver showed some metabolic activity in the groin area but stopped short of taking a big enough picture of the area for diagnosis. Most likely it is another site of metastasis. If that is what cancer feels like when it starts to devour the body, I want to be put out now. Most people I've known who have died of cancer are pretty doped up just before they die. Now I know why. When my friend Toni died, her kids where running all over town trying to catch the visiting nurse to get more pain meds from her as they didn't have enough at the home to ease her pain. That is my biggest fear. I would love to die at home but if I go to the hospital, I will always have access to painkillers. Tough choice.

So this is how I live now. I ponder access to painkillers, insurance premiums, bills that will outlive me, parents and a husband who will need care and who will outlive me, the efficacy of clinical trials versus traditional treatment, and the realization that even enjoying the moment requires a promise of a future to avoid being drowned in the sadness of experiencing that moment for the last time.