A Cancer Conversation Between Two Caregivers

Through this website I have met some incredible people who really lift me up. Some of our conversations help me in so many ways.

Below is a letter received from a stranger who has become a dear friend. This letter and my answer are included on my site to illustrate the different effects that prolonged stress can have on a person. Maybe another reader will find comfort in this as well.

Hi Debra, October 2009 

As cancer parents, we are always talking about our kids, how they feel, their counts, our concerns, blah blah….I am wondering about how the parents (or care-givers) themselves are feeling. No one seems to ask about us. We just end up on this emotional roll coaster and I am beginning to wonder what the effects are, especially during the Long Term Maintenance…..perhaps a post traumatic stress syndrome thing, I don’t know. I do know that I don’t feel the same way I used to, age be damned, and that I find my concentration very poor and I skip all day from one thing to the next; I fret, I am nervous, I am stressed to the max and recently I have begun to feel these weird vibrations in my feet, which are driving me crazy, especially noticeable when I am still. When Adam first got diagnosed, though I seemed to others to take it heroically, I am sure that deeper inside my body was shocked and wracked with tension. Sometimes, when we used to do the high dose methotrexate (chemo) and be hospitalized for five days for this, I would feel burning sensations on my face and feel dizzy in the hospital, that several times during the day I would go for a walk outside just to get out.. All this seemed to disappear once we started Maintenance. But now I am wondering whether or not all this tension is coming out slowly as I do not need to rev to high as before – the last four years of my life have been pretty hectic, between dealing with a high strung toddler and just being a regular housewife of a large family; 2006 – massive 10 month home renovation which ended Mar 24th where I more or less became the general contractor; 2007 – my father , who lived with us passed away July 11, and Adam was diagnosed July 24th and reached Maintenance Dec 6….and then the crazy woman embarked on some schooling from March 08 til August 09, with a bout of PCP pneumonia for Adam thrown in and a potential relapse issue in September (which of course made me ballistic for ten days)

So what do you think? Am I too hyped, too stressed, very sick or just plain crazy???!!! I am curious to know how you have felt over the past year…. Janine

Oh Janine,

I know exactly what you are talking about. When Kayla was first diagnosed and we were in the hospital I had a weird phenomenon happen – the walls would move when I walked. It felt weird, floors and walls moving. It has happened every time we were in the hospital except this recent last visit.

So yes, the stress is very intense, there is nothing like it because you know deep down that your child could have a reaction, fungus, flu etc., that could be lethal.

I work out for the stress. This started when Kayla had her first broken leg (the day or two before diagnosis) and she was weak from chemo and we had to move her. My strength was not up to par with carrying a four foot 60 pound girl. (I weight 120 and am considered tiny by some.) The situation was such that I lifted weights to be able to carry Kayla around and move her. Thank god I did because the next leg was broken five weeks later. The orthopedist said that she could not put ANY pressure on the first broken leg for several weeks after the cast was off. But between the breaks and neuropathy she could not put any pressure on her feet anyway whether they were broken or not. It was one hell of a ride. The weight lifting ended up being a stress reliever for me. It helped a lot. I also took lots of vitamins everyday. The accomplishment of being able to pick her up easily made me feel like Rocky from the Sylvester Stallone movie.

Death and the possibility of death used to haunt me. Especially when I would find out that another child was dying. One family was ahead of us in treatment. The daughter was going through a bone marrow transplant and I went to see her. That was the biggest mistake I ever made. She looked so bad that I had nightmares for a couple of weeks. She eventually died. The day that her mother talked to me in the hospital parking lot was one that I will never forget. The doctors said that there were no more options the leukemia had become very aggressive. We cried together and then she told me that her daughter was picking out the coffin and other items planning her funeral. It was pretty traumatic. How does one just turn their back on something like that? The children that have died haunt me.

What I have learned is to accept any possibility while fighting like hell when things come up. My fighting is in finding answers for the myriad of side effects, symptoms, distress, etc.

On top of this I had to take actions to compensate for the incredible stress that comes with cancer. I make sure I eat every day. Protein shakes are consumed twice a day with brewers yeast and I do take vitamins.

Twice I have drunk rum. One time I had to have a drink to get through reading the study paper of Kayla’s that was about 100 pages of medical jargon. That small drink really helped me! But I do not do the drinking because it would tire me out for days afterwards. Once in a rare moon I go out with girlfriends but honestly I do not really get any joy out of it. This sounds terrible but their lives seem so trivial and the conversations about clothing or the latest movies drive me nuts. I could give a rat’s ass about all that stuff.

My website saved my sanity because the idea of helping others gave me a purpose.

So you are not alone. The stress is terrible. Sounds like you need B12 for the tingling in the feet. Magnesium helps with stress. Actually you know what to do. You have to apply to yourself what you do for your family all the time and especially what you do for Adam.

All that we can do is the best that we can. When the dark thoughts come into me I just tell myself that Kayla is cured. There will be no more cancer, yadda, yadda. It’s almost like an internal chant and I say it until the dark thoughts go away.

Cancer is the worst mental trip I have ever been through. It is a real challenge to stay upbeat. The other thing that helps is comedy.

Well I hope my long letter helps in some way. I am totally with you… P1020314


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