Now that Sammy is in Long Term Maintenance (LTM) the goal is to have his nadir (lowest point of ANC level) reach the therapeutic range...in other words...the lowest it can be to kick cancer's butt without going below 1000. At this point, almost half way through LTM, we still have not got those counts into the therapeutic range...thus, Sammy's chemo continues to increase.
This is frustrating beyond belief. Apparently, it is better than some children's experience of having their ANC drop so low, they are constantly taken off treatment. Such is the individual nature of this particular beast...every case is so different.
I am compiling a spreadsheet of Sammy's blood counts and ANC's so I can visually see the trends as the chemo is increased. Call me crazy, but I need to know what is going on and find I can often get more out of the doctors when I go into the clinic armed with my own attempts at figuring it all out. It gives them something to go on as we talk....surprisingly, I am often fairly on the right track, despite a distinct lack of medical knowledge.
Cancer moms tend to have an amazing ability to decipher so much jargon in their desire to have some control over something they have absolutely no control over. Okay, you can lock me up now...I know I sound completely insane. Cancer Moms...you know. Take a look back at Shoes for a reminder of our new normal if you wish.
I am compiling a spreadsheet of Sammy's blood counts and ANC's so I can visually see the trends as the chemo is increased. Call me crazy, but I need to know what is going on and find I can often get more out of the doctors when I go into the clinic armed with my own attempts at figuring it all out. It gives them something to go on as we talk....surprisingly, I am often fairly on the right track, despite a distinct lack of medical knowledge.
Cancer moms tend to have an amazing ability to decipher so much jargon in their desire to have some control over something they have absolutely no control over. Okay, you can lock me up now...I know I sound completely insane. Cancer Moms...you know. Take a look back at Shoes for a reminder of our new normal if you wish.
The desire to have control over something you have no control over. Oh, I so understand that. Each challenge has its jargon. We connect with others who speak our language.
ReplyDeleteYou don't sound crazy at all. You sound remarkably sane and grounded.
Sending good thoughts and prayers for a good week.
When my dad was alive, he was challened on a daily basis by diabetes. It never failed that, when there was a problem and he needed hospitalization, he invariably checked himself out to get things under control himself. He researched his disease, took new treatment ideas to his doctor, and "pushed the envelope" in order to get the newest and the best. He knew his body like no one else. Thankfully his doctor worked with him, and appreciated his knowledge and involvement. YOU are that person for Sammy until he can be that for himself. Certainly you are crazy.... "crazy like a fox!" Keep at it girl!
ReplyDeleteGalen and Lisa....you guys are wonderful! I have been crazy all my life...it is true :) I WILL be there for Sammy and always second guess EVERYTHING...that is my strength. At this rate, I'm going to be an amazing Scrabble player...dexrazoxane anyone????
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