Wednesday, May 02, 2007

I Will...

Vampboy is mid-way through his current cycle, and although it's been a bit harder than the previous ones (with some slight nausea early on and more blood and platelet transfusions) he seems to be holding his own. I still can't believe how radically different it is from the constant barrage of misery that was in earlier cycles.

The lack of daily drama has given me more time to think, and lately I have been thinking of "survivorship". This is the term coined for the growing ranks of cancer patients who actually make it -- as cancer survival rates increase, the "establishment" has begun to focus attention beyond the treatment. Cancers that were once a death sentence are now considered "chronic diseases to be managed", much like HIV (for those lucky enough to have access to medical care and affordable drugs, anyway).

Of course, Vampboy's cancer does not fall in the "chronic" category. AT/RT is still one of those cancer's that kills people. Yet, as we are well on our way with maintenance chemotherapy, his tolerance of the treatment has given us a chance to consider that he may (and I stress, may) live to be 100. Or, he may only live to be 10 -- but either way, he could very well make it beyond the end of treatment; and that end is on the horizon.

Don't get me wrong -- I still contain uncontrollable rage at the life we lost, past and future. However, when you lose everything, the clean slate that is left provides a unique opportunity to start again. Many cancer patients make course corrections as part of the "new normal". Perhaps they change jobs, move, or re-prioritize other activities and relationships in their lives. Toddlers don't have complex realities that offer that kind of opportunity, but certainly Vampmommy and I have begun thinking about it. In our case, "survivorship" is a family issue. What kind of a family do we want to be? Should Vampmommy go back to work when this is over? Should we adopt like we planned before Vampboy got sick, or just expand our ranks with additional pets? And, whatever choices we make, how much do we consider Vampboy's cancer (and its potential return) in making them?

In the immediate moment, Vampboy's reactions to his current treatments also allow for Vampmommy and I to turn some attention to our own self-care. Parents everywhere tend to struggle with this part, but when you're the caregiver of a child who has additional needs the very thought of keeping yourself healthy tends to get thrown out the window. So we're eating better, trying to exercise, and working to stave off the effects of six months of comfort and hospital food.

Hell has become a bit more comfortable. The storm around us has slowed, and I hear for the first time a little quiet, and open space to let the possibility of a future in.

6 comments:

Anonymous said...

Tym, you continue to amaze me with your inspiring comments. I hope spring brings more than sunshine into Vampfamily.

Love, Aunt Mary in Wisconsin (Mike, Molly and Jeremy too)

Lainey-Paney said...

I completely agree with what Aunt Mary said.

You guys are just inspiring, and I'm amazed at how you guys handle all of this.

googiebaba said...

Hi Vampdaddy, I'm glad to hear that you son is tolerating his chemotherapy well.

I get a lot out of reading your blog and hearing your experience with this terrible disease.

Francesca Giessmann said...

Dear Vampdaddy:
Found your link on Leroy Sevrans' blog. My name is Francesca and I am 34 and 6 weeks ago i got diagnosed with stage 4 Non Hadkin's Lymphoma... but since the beginning of this journey i had a sense of strenght that I had to get better because i have a 3 year old and I want to be around for him or at least long enough for him to have memories of me. I also kept on thinking ... so happy that this is on me and not on my son...So , I admire your courage and will visit the blog to know how vampboy is doing... i have also began a blog and welcome a visit ...
backoffcancer.blogspot.com/
stay well..
many blessings

Denver Dad said...

I know I'm starting to sound like a broken record, but I still wish you and your family nothing but the best. I can't imagine what it's been like for your family, but from your words, I have some ideas. Continue to take care of yourself, your son, and your wife.

radioactive girl said...

I relate to so much of this. I had cancer, am still going for follow ups, and every future decision I make for myself or my family, I weigh with my odds for the cancer recurring. My son has stomach issues, so I relate to the parents as caregivers too. Thank you for writing all of this and sharing. I will keep your son in my thoughts!