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Sunday, November 14, 2004

She is Pale but eating on Day 41

The squirrel is half way through his morning corn cob. They get one, maybe two a day. If you put too much out they run themselves ragged. I think squirrels originated Obsessive Compulsive Disorder. "OCD" in more elevated circles

We all dressed up last night and went out to Palisades for dinner. M-E had a salad and one third of the famous PuPu platter. She was happy and I was ecstatic. I am still sure that there is some magic food we can feed M-E and she will get better faster. I am just sure that if we can convince her to eat or drink just the right thing she won't need a blood transfusion.

She is headed for one this week. She is getting more and more pale each day. She has had 48 doses of Chemo and 12 doses of radiation since we started Consolidation on September 25th. She only has 5 more before the 6th of December when we begin the first Interim Maintenance phase.

I look at the calendars and the schedules and try to contemplate what it all means and where it all leads. Each child is given a "Road Map" . It lays out the treatment and doses for the course of treatment. It is sort of like a Triptych from AAA. We have been able to turn over only one page of the map. Soon we move to the next page and continue this journey. I just hope there are somethings I recognize as we follow this path. The not knowing and not being able to plan makes me crazy.

I find that lots of things make me sad. It is the little things like not knowing if we can plan to go to someone's house on Thanksgiving. Wondering if we plan a big Christmas if we have to cancel. Wondering is I should plan for M-E to be in Crew in the Spring.

To complicate the sitution is this doubt and fear in the back of my mind all the time. Will I regret it if we don't do a full blow-out Christmas? What if we don't go to see the Nutcracker this year? Do we go so she can see it or do we stay home because there are germs? Will she ever be cancer free. I have yet to find any assurance that this will ever really go away. I keep running into articles on "secondary cancers", shorten life spans, learning disorders, liver damage, kidney damage, brain damage.......... emotional damage. The standard line is that I can not think about that but then how do I not think about it. How do I ever let it go? How do we plan for a future if we don't know what the possibilities are going to be.

I will try and focus on today, and this moment and watch the squirrels.




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