Stop the presses. This just in from the City of Hope.
In partial penance for two weeks of over-indulgence, the City of Hope's GI department has ordered Susan to fast for 24 hours before admittance on Wednesday, March 28. Her treatment has been delayed until doctors can perform a colonoscopy.
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Oh for goodness sakes!! I know you heart CoH and all that, but honestly it seems like they're not preparing you very thoroughly. And isn't this what they DO all the time?! They couldn't have told you about the fasting a couple weeks ago? Or even Friday?
Sigh. Sorry, I'm just exasperated for you. I hope you're holding up okay emotionally. It would be torture for me mentally to keep gearing up for the "big day" and then having it delayed. Yikes. :-(
Hang in there.
This is the other Karen (Karl). I second the first Karen's comment. But at least you know YOU won't be full of ...!! Maybe you should remind them that you have a very well read blog and that, through it, everyone is learning more and more about City of Hope every day.
I second that Mrs Duck!
You tell 'em Susan. Tell them about your audience of advocates (many of whom wave the mighty Pen. Yikes!
Oooooooh....The colonscopy prep is definitely a "home alone" thing requiring much ventilation. George and Cynthia, take cover. Sorry.
This was bound to happen: Two of the three Karens in my life are posting side by side.
Karen Klein, meet Karen Karl. (I wish I would have had time to introduce you at the party.)
You would like one another. You're both much smarter than the average bear and very compassionate and passionate women.
How frustrating. I hope you are holding up ok and that this isn't increasing your level of anxiety,worry, pressure,etc. Here you are, the stalwart warrier, ready to walk through the belly of the beast and the road to the beast just keeps getting longer and longer. I hope that makes sense. I'm still feeling a bit mortified after confusing the hours of your fete -- and arriving after the party ended. Thanks for being so gracious in the face of my mix up. Thinking of you. Margaret
I am VERY frustrated but I walk a fine line about dissing CofH on the main blog because they are, after all, the ones who are going to save my life.
BUT, on my first visit to CofH in late January, one of the first questions I asked Dr. D was, "Should I get a colonoscopy?" And then I cited chapter and verse from a medical journal article written by a mantle cell lymphoma specialist at Memorial Sloan Kettering. He recommended that MLC patients have this procedure because the cancer has infiltrated the colon in 80 to 90% of the cases.
I told my doctor that I wanted to go to the clinic that did my procedure three years ago, but I needed her to write the orders. She never wrote them and kept vacillating about the necessity of the procedure.
Even at my last appointment with her two weeks ago, she said, "I'm sorry to be vague about this (the colonoscopy)."
Enter MD Anderson and Dr. Forman. The second opinion insisted that I have the colonoscopy before starting Hyper CVAD treatment and Dr. Forman agreed that this is standard procedure.
The treatment will be the same regardless of the outcome of the colonoscopy, but we need a baseline. (And I've been trying to tell my assigned doctor this for how many months?)
Did you just hear the scream heard round the county?
Susan, make sure the treatment nurses know you're coming out of a 24-hour fast and that you'll need nutrition before starting chemo. I would ask them what foods they recommend specifically for your regimen. Something non-greasy for sure. Seems obvious but sometimes you have to connect the dots for people.
... That said, and I know you're frustrated now about the colonoscopy (they really did screw up), I know that COH is a great institution. Still, we've all got an eye out for you.
I'm symthathy screaming with you, Susan. This just confirms my big theory of life that "You can't stop SH_T from happening." Whatever form it takes.
My condolences about the procedural screw-up. Just let the Hotel Hope staff know that we will be watching very carefully from here on in.
Hang in there.
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