Yesterday (Monday) I had my third and final "short" chemo. I affectionately call this chemo my "wired but tired" chemo, because the meds give me a "caffeine high" that make it hard to sleep even though my physical body is tired. I did sleep some tonight, but woke up, and now it is almost 4:00 a.m. I went to sleep reading a new book that I purchased, but I'll write more about that in a moment. First, the stats:
My chemo was fine. Like clockwork. I will have the Neulasta shot tomorrow (Tuesday). My hemoglobin (iron) is steady at 9.7. My oncologist is happy with this, so I am happy with this. I will continue with supplements and try to be good with my diet. The new chemo (carboplatin) starts September 22. I'll have that every three weeks for 4 times. Sounds like it will be easy to tolerate. Carbo causes hair to "thin," not to fall out. The nurse said I might start to get some hair growth back, but I think she was only trying to be nice. I'm not counting on it for a while.
I also met with my plastic surgeon -- I have a quarter size wound that will not heal (a complication of damaged, radiated skin and poor healing from current chemo). My doctor is satisfied that I have no (and probably will not develop) any infection, but we probably will not do anything more related to reconstruction surgery until after my chemotherapy is finished. Bummer -- this is no fun to doctor every day. But, you gotta do what you gotta do...
So, for the book I found... before I tell you the title, you have to promise not to freak out. Not to email or telephone me. Not to read anything into the title, or to worry that I'm becoming morbid. I'm not. Even at 4:00 a.m., I'm perfectly in my right mind and not upset about life....
The book is titled On Death and Dying, by Elisabeth Kubler-Ross, M.D. Dr. Ross is a medical doctor, psychiatrist and (here's your new word for the day) a thanatoligst. This is a profession that I didn't even know existed... Pretty interesting, really.
Dr. Kubler-Ross's book seems to be written for doctors/nurses/clergy -- to help them help their patients/families address the issue of death, whether imminent or not. I already like her book for Chapter 1 where she talks about death from a child's point of view (p 20). I profoundly appreciate any thought process that makes me more aware and sensitive to what my children (or spouse, parents, siblings, others) might be feeling but not saying.
It has me thinking about things unsaid, and that time with my family and friends is very precious. That message is loud and clear when you are first diagnosed, but it does tend to fade. I needed the reminder and am already thinking of ways to spend better time with my kids. Liam, (who is 8 and never stops moving) would love for me to suggest a 20-minute game of Wii with him each day... Tyler, who often walks our dog after school, has so much each to say about school -- a daily walk with him (and the dog) would be good for all of us. And Shane... thankfully is willing to drive anywhere with me; I already know that is good talk time.
Reading this book also got me thinking about my childhood experiences with death. I was 6 when my paternal grandmother died. Looking back, I can see my experience was similar (not exact) to what Dr. Ross describes in her book. Describing death to a 6 year old is tough business.
My paternal grandfather lived less than 5 miles from us, and he lived for many years after my grandma died. I have almost as many memories of being at his home as of being at my own, and I mainly recall that he always had time for me and my younger brother and cousin. He was the kind of grandpa who would take you to lunch and let you order ice cream as the main meal. He loved to tell stories outside in his yard (I credit him with my BSF story telling skills), and he almost always played checkers with me before dinner at our house in the evening. I also remember every Saturday night (when I often stayed with him) that he would get his Bible out and read silently to himself. I have no clue what he read -- he never tried to push or preach to me -- but I can see him on his couch, silently reading with just his lips moving to the words. I know he was getting ready for church the next morning, but that is all I know.
As I became a teenager, I became involved in my own life, and moved to college 2 hours away. He died while I was there, and the drive home for his funeral was one of the longest of my life -- I hadn't had anyone die since I was 6 years old, and I worried about what to say or do. What would be the right or wrong thing to do?
My mom handled it wonderfully. My two most vivid memories are in the funeral itself (which was hard; we loved him very much) and later in our kitchen just talking about him. What we missed about him, what we remembered about him, the details of his last days. I'll never know how hard (or comforting?) it was for my mom to talk to us kids like that, but it was such a comfort to me. Nothing was taboo, and the atmosphere immediately cleared the air for me. I knew that we could talk about him again, whenever I wanted. We did not have to avoid uncomfortable details about his death or pretend. His life and his death were real, and both had had an impact on our family. That was the message.
When my maternal grandmother died (my grandfather passed before I was born), I was an adult and living in Brussels. I had just been home a few months prior, and had had a good visit with her, so my mom said that coming home for the funeral was not necessary. I was comfortable with this, and I still appreciate her understanding of the situation (we had 2 toddlers at the time and of course lived so far away). The one regret I have is that I was not home to help my mom get through that time in her life.
Looking back, I see that death has gone full circle for me -- I experienced it as a small child, but did not understand it. I accepted and made "peace" with it as a teenager. And I learned that hard decisions sometimes have to be made as an adult. No doubt, those experiences, at three critical points in my life, have helped shape my attitude today.
Now trust me, I am NOT glamorizing death or looking for it to happen. Human nature is to hope and survive and LIVE whatever the odds, and that is what I am fighting to do. Honest! I am hoping and planning to live for another 40 years!
But I had heard about this book a long time ago, and I was interested.
When you hear the word cancer, you think the word death. It is just inevitable. Just like "up" goes with "down, or"in" goes with "out."
The relationship is automatically there. Only, no wants to talk about it.
So, for me, this book has been a comfort -- it addresses feelings and emotions that others can't or won't. If it gets to morbid, I promise to put it down. For now, it is nice to have emotions unsaid be validated.
If you work closely with people... this is a book that I would suggest. It has interviews and conversations with terminal patients, and discusses the five stages of grief/death in detail (I think; I'm not that far yet). It seems to be written with sensitivity and honesty.
Jesus said to her, "I am the resurrection and the life. He who believes in me will live, even though he dies. John 11:25
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