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Joined: Mar 2003
Posts: 1,384
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Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Mar 2003
Posts: 1,384
Likes: 1
Hi Jack,

Gary and Danny have made great comments now I am going to be hard on you: YOU need a break! You should find someone to take care of things for a few days and let your mind get a breath of air.

It is important for you to recharge! It is important for your other relationships to recharge! It is absolutely not going to do Eric any good if you are beatup (lack of a better word) and it is easy to get beatup by this process. You have done an unbelievable job so far and you need to force yourself to reorganize the troops for the fight ahead.

Covey also talks about priorities toward your goals and one of the things we get stuck on is things that are "urgent" but not "important" My suggestion to you is that Eric is in the middle of the system now. He has competant and capable caregivers. Let someone else fill in as driver and waiter so you can focus on the two other areas "urgent and important" and "Important but not Urgent"

He will need you more later and you need to focus on other important things and come back for Eric revitalized!

I hope this didn't sound too bad, it's from the heart.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
Joined: May 2003
Posts: 39
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: May 2003
Posts: 39
Hey everyone. Just wanted to give you a quick update. Eric is doing better. He is taking (2) patches and Vicodin and that is managing his pain enough to allow him to eat. The irony is he is now at the stage where there is no taste, so liquid food is more appealing than solids. Earlier tonight I was at his house and sitting in front of him on the table were a bowl of tomato soup, a salad with ranch dressing, and a perfectly grilled cheese sandwich he had just cooked. All of it had no flavor. He even made me taste the tomato soup (which I don't like anyway) to make sure it had flavor!

He still has some nausea. He had amifostine again on Friday and it make him sick. However, he prefers to live through the sickness if possible in hopes that he will have long-term benefit to his salivary glands from the amifostine. Overall, it was a good week.

Since I haven't been too clear about this I am only driving Eric one day per week. The other four days are his parents and other friends. I do see him most evenings for at least a half hour or more. Fortunately he has another friend who is staying with him Monday to Friday. She is a great influence on him and is a godsend to have in the house. We all have known each other over twenty years and are comfortable together.

Mark thanks for the advice. I actually have been at a two day adoption seminar with my partner in Portland, OR. It was a great experience. There were five other couples in our group and it was a well organized and meaningful introduction into "open adoption." Since this is an oral cancer board I don't want to digress, but I do want to emphasize that I am trying to live my life and go about my routines even though I don't have the same motivation and interest I had before Eric had cancer. I was originally scheduled to attend this conference on May 21st. (it is offered monthly). I cancelled on May 16th so I could go with Eric for his tests (he had planned to go by himself and I told him I was going with him). My original adoption seminar date, May 21st, was the day I sat with Eric in the hospital and heard, "you have a squamous cell carcinoma." It was healing for me to able attend and it was an interesting juxtaposition to begin the week with a very difficult radiation experience and end it with learning about the challenges and joys in trying to adopt a child.

Anyway, things are better for Eric, things are better for me (there is probably a correlation) and Eric is now 1/2 way through radiation. I hope you all have a great weekend.

Jack


Caregiver to Eric
Squamous Cell Carcinoma, L. Tonsil
Stage 3 (T2-N1-M0)
5 Years Cancer Free Now
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