Caught off Guard

Clearly planning and organizing is a way to try and bring order to our worlds. It is a way to get a handle on all the crazy things that happen in our lives. I have wall calendars, treatment calendars, treatment road maps, Outlook Calendars, MSN calendars, and a Blackberry that takes takes all the information and pulls it together. I spend endless hours making sure that everything is reflected in the calendar and then, low and behold, I am caught off guard and it all goes sideways. I am always shocked at my surprise that the plan is not being executed. Evidently I am not a quick study.

Case in point: Today. We spent most of yesterday at the hospital. Blood draw, dressing change, visit with the doctors, additional blood draw, chemo, IV's and home. 6 hours. I had planned for that part of the day. I can get a lot of reading done as long as there is no real content. People magazine is a good distraction. We came home and M-E seemed pretty chipper. We managed the administration of drugs in such a way that she was a bit queasy but able to drink and eat yesterday. She wanted apples and ate two of them. That was major.

What I did not anticipate was this morning. I expected her to hop out of bed and be ready to go to school. When I looked at her after her 12 hours of sleep and she was not even moving , I was faced with the fact that I was wrong. She is wiped out.

What alternate universe do I inhabit that makes me think we were back on a normal schedule. I was figuring that we would pop up out of bed and barring no snow, there would be a trip to school, and I would head to work and clear my office and work on lots of stuff and make all my clients very very happy. WRONG, WRONG, WRONG............................... The reality is that no dose of chemo results in the same reaction. Because each dose is greater than the last each is harder on her body. I am beginning to understand the concept of going "To Toxicity".

Toxcity is not a new store or a music group. It is a major test for your body. It is a test of your liver and your kidneys. Can they take it? when will they say enough? How sick does she have to get before they scream uncle! We won't know if triple the starting dose will be too much until the 18th when we try again and push a litte more and try to find where the wall really is. I guess Hem/Onc doctors are a bit like 3 year olds seeing really how close they can get to the candles before they really really burn.

I was just given the reminder that my daughter has cancer and she is being treated with very powerful and scary drugs. She is sick this morning and my expectations of getting us up and out the door made her anxious and concerned.

Time to change that plan. I am so easily lulled into the "we are getting back to normal" mode. I I can not believe I am that silly. She has settled down and she is back to sleep on the couch. She is under a quilt made for her by the St. Matthews Quilt group. A beautiful purple healing quilt.
A quilt that has dark and light colors through out. She can rest now for awhile. I will make a couple of phone calls and will work on getting someone to be here tomorrow so I can work.

I have to keep myself calm and keep from getting upset. I hate to disapoint the people that depend me. I am a responsible and capable person that does what I say I am going to do. Right now I am a person that needs to make fewer promises and lower the expectations I have of what I should be doing. One step at a time. One hour at a time.

Evidently I still have a lot to learn. I would like to think I have learned a lot but evidenlty there is more for me to learn. I just hate that!

The houses across the street are up one story. Lots of nail guns and hammers and more glue than makes me comfortable. It makes me wonder. I suppose it is like making hot dogs. You don't ever really want to see what goes into the process.