It has been a week since Clem's last treatment and he made the declaration today that he is feeling better. There are other subtle clues which indicate progress. His smart ass mouth and his incessant punning are just two. It is good to have him back.
We have a few weeks off before any more treatment. Our current plan is to visit the colon surgeon on April 20th in order to begin surgery planning. After the procedure he will be going back on the chemo for approximately 4 months. We were kind of bummed by that news because we were expecting less. Everything will hinge on the lymph nodes which are located around the tumor. If they are negative then the treatment will be less intensive.
We will also have a battery of tests post operatively which will determine the success rate of the chemo and radiation he has already received. There is a blood marker (CEA) which determines the presence of cancer in your body. Our oncologist has monitored this marker through treatment. In October it was 12,000, after chemo it was 5000, after surgery it was less than 200, after the radiation it was 58. This is a very good sign that he has responded very well to the treatments.
Today we are in Huntsville with his family celebrating Easter and the impending arrival of our new neice. The weather has been beautiful and we just consumed an amazing meal. Clem is lying here beside me taking his daily nap and I am enjoying the warmth of his body and the sound of his rhythmic breathing. Husbands like babies are exceptionally cute while they sleep.
Clem seems to have a renewed energy lately. I think the chemo pump was a constant reminder of his situation and being rid of it allows him greater movement in his sleep. I know I am glad that it is gone! I am also happy to have a break from the hospital. It has been hard to keep negative feelings at bay while watching so many people who are sick. Clem is oblivious to these people. His mission is clear and it does not involve them. He does not have to have compassion or be moved by others he is simply in survival mode just like them.
I on the otherhand experience a common caretaker emotion. Guilt. I know it isn't logical but I compare. it with the feelings that survivors of large disasters experience. I feel guilty that it is him and not me. I feel guilty that I can't give more of myself to him or to the others I am watching. Some days I have to wear my earphones to the hospital just so people won't tell me more of their sad stories. I feel guilty because I am trying to survive myself and I am not sick.
Being around people who are facing grave illness and death is a very introspective place to be. Everyone knows that death is inevitable but most of us live our lives as if this only happens to others. I guess it is easier that way. Lately I feel as though I am seeing my life through a different perspective and the journey doesn't seem as long as it use to. My children are now having children, my parents are moving toward 80, and now my strong, healthy, invincible, husband is struggling for his life. It all seems so surreal and disorienting.
For those of you who know me would never say that I have wasted my life. I have certainly taken chances, jumped off my share of cliffs, and have more than once taken big bites out of the juicy watermelon of life. Even now the memories of the juice running down my cheeks onto my clean white shirt inspire me to stand up and twirl. Lately though I can't seem to remember that girls face and occasionally I become afraid that she will never come back out to play with me again. Then just when I seem to be overwhelmed with feelings about the uncertainty of our future Clem puns or makes up an insulting story about me to share with his family and I feel the fiesty girl inside cut her eyes, clinch her fists, and grin. Like I said, it is good to have him back!
We have a few weeks off before any more treatment. Our current plan is to visit the colon surgeon on April 20th in order to begin surgery planning. After the procedure he will be going back on the chemo for approximately 4 months. We were kind of bummed by that news because we were expecting less. Everything will hinge on the lymph nodes which are located around the tumor. If they are negative then the treatment will be less intensive.
We will also have a battery of tests post operatively which will determine the success rate of the chemo and radiation he has already received. There is a blood marker (CEA) which determines the presence of cancer in your body. Our oncologist has monitored this marker through treatment. In October it was 12,000, after chemo it was 5000, after surgery it was less than 200, after the radiation it was 58. This is a very good sign that he has responded very well to the treatments.
Today we are in Huntsville with his family celebrating Easter and the impending arrival of our new neice. The weather has been beautiful and we just consumed an amazing meal. Clem is lying here beside me taking his daily nap and I am enjoying the warmth of his body and the sound of his rhythmic breathing. Husbands like babies are exceptionally cute while they sleep.
Clem seems to have a renewed energy lately. I think the chemo pump was a constant reminder of his situation and being rid of it allows him greater movement in his sleep. I know I am glad that it is gone! I am also happy to have a break from the hospital. It has been hard to keep negative feelings at bay while watching so many people who are sick. Clem is oblivious to these people. His mission is clear and it does not involve them. He does not have to have compassion or be moved by others he is simply in survival mode just like them.
I on the otherhand experience a common caretaker emotion. Guilt. I know it isn't logical but I compare. it with the feelings that survivors of large disasters experience. I feel guilty that it is him and not me. I feel guilty that I can't give more of myself to him or to the others I am watching. Some days I have to wear my earphones to the hospital just so people won't tell me more of their sad stories. I feel guilty because I am trying to survive myself and I am not sick.
Being around people who are facing grave illness and death is a very introspective place to be. Everyone knows that death is inevitable but most of us live our lives as if this only happens to others. I guess it is easier that way. Lately I feel as though I am seeing my life through a different perspective and the journey doesn't seem as long as it use to. My children are now having children, my parents are moving toward 80, and now my strong, healthy, invincible, husband is struggling for his life. It all seems so surreal and disorienting.
For those of you who know me would never say that I have wasted my life. I have certainly taken chances, jumped off my share of cliffs, and have more than once taken big bites out of the juicy watermelon of life. Even now the memories of the juice running down my cheeks onto my clean white shirt inspire me to stand up and twirl. Lately though I can't seem to remember that girls face and occasionally I become afraid that she will never come back out to play with me again. Then just when I seem to be overwhelmed with feelings about the uncertainty of our future Clem puns or makes up an insulting story about me to share with his family and I feel the fiesty girl inside cut her eyes, clinch her fists, and grin. Like I said, it is good to have him back!
8 comments:
As a former caregiver of a terminally ill husband, it is very interesting to me to read your comments. You are very intelligently introspective. I could have used you back then! Are you tired yet of being told how strong you are? That got old for me really quick. I didn't want to be strong. What I didn't realize then but know now is that I wanted to be someone's princess. Life is such a journey.
Nancy
If it was insensitive of me to use the "terminally ill" phraseology, I apologize. I was not trying to compare the husbands' plights, merely the caregivers'.
My then husband, as you know, survived his 'terminally ill' prognosis, anyway....
am I just digging myself deeper and deeper?
love you both -- N
I will either live forever or die trying!
-clem
I once heard a recovering alcoholic refer to his disease as being terminal, but not fatal. That has wirled around in my brain since I was diagnosed with diabetes. It could kill me, but I'm determined to die from something else.
Am I digging a hole?
The same recovering alcoholic refered to alocholism as a family diseas. Having had a recovering alcoholic for a husband, and a mother chronically ill for several months, I've come to belive that unless you live on a deserted island by yourself all illness are family illnesses.
On another tangent...Pam, remember those flowers you saw that looked alot like indian pipestem? They weren't pipestem. They were One Flowered Cancer Root, and they are very RARE. Not on the endangered list, but an experienced botanist Alan C. works with has only seen them four times in 30 years.
I feel so priviledged that you spotted them and now I get to nurture and protect them.
Myrna
On another note, Doug told me that yall came by yesterday while I was gone to the doctor with my father. He recieved a call to come in just two weeks after his last visit and a month before his next scheduled visit. It's been my experience that they only do that when they want to give you bad news. What a relief to find they only wanted to give him all the positive results from the tests that they did two weeks ago and repeat one minor blood test.
Hello Clem and Pam,
I have been thinking of you and keeping you in my prayers. (at least that is the common term for what I am doing..)
May you be well friends,
Teresa
Clem and Pam,
This a.m. I realized that you would probably not know who Teresa is so she is aka "Snap" or Bliss's mom.. Ahhh , sorry about that.
Teresa
Teresa! Funny, I don't think I ever knew your "default world" name. Ian said you were doing great and living back in Arcata. That's one of my favorite places.
Glad to hear from you again. Stay in touch! Let us know how you are in between Burns.
O's,
Clem
I dreamt that I was sitting on a couch with you (or Pam, or both, I cannot remember!) and all was well, so I knew you'd overlooked my insensitivity...
nice to have friends without drama (and yes, somehow you miraculously still qualify..LOL) ...here I go again!!
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