Today was completely nuts. I've been trying to get in to see the oncologist (Wexler) that the surgeon (Consorti) referred me to, but Wexler was going on vacation and they weren't sure they could fit me in. I've been playing phone tag with their office. So this morning at 11:30 I call again and get the receptionist in Wexler's office, and said I know she's going on vacation, but since I got this bad MRI that indicates it's spreading fast I'd really like to see somebody in the practice so we can get going on chemo ASAP, even if we have to start without a port, or get the port in sooner. Girl on the phone says sure and asks for my name, and then says "What, wait, aren't you here right now?" Apparently the girl on Friday got me on the schedule for 11:45 this morning, but in all the phone tag nobody actually left a message saying I had an appointment. So all of the sudden I was late.
So I go tearing out of the house in the mismatched clothing I was wearing to walk the dog at 6 this morning, no shower, just gross. The fact that I was "working" this afternoon entirely left my brain. I got really lucky and didn't accidentally stand anybody up for a meeting. I made it in by noon and they walked me straight into the exam room to see Wexler and told me we could do the paperwork later. They were highly apologetic and this is really the only snafu I've had so far.
She agreed sooner is better, but the first drug they are going to give me is apparently notorious for eating through skin and collapsing veins and basically not worth the risk if you don't have the port in.
So they are going to try to get me in earlier to get the port, but we're not sure if it's going to happen. While I was there they gave me a tour of the chemo rooms, which are not fancy but seem quite comfortable. They have two private rooms which are first come first serve, and then one bigger room where there are four big comfortable chairs and a the nurse who manages care there. They have wifi and a DVD collection and room for friends to sit with me.
For now, my schedule looks like
Monday 10:15 - meet with a nurse practioner/nutrition specialist who will go over the drugs I'll be on, possible side effects, and recommended nutrition during chemo.
Monday 3:00 - echocardiogram to assess risk levels for one of the drugs that can destroy my heart
Tuesday 1:30 - port placement (unless they can schedule it sooner)
Wednesday 8:30 - biopsies for the spots that popped up on the MRI if they can find them on ultrasound - one lymph node and one likely new tumor
Still to be scheduled - full body PET scan to see if there are other tumors hiding elsewhere, and a brain MRI. Neither of these are required before I start treatment, they are just to set baselines to watch over the next few months.
If they can get me in to start chemo on Wednesday afternoon or Thursday I'm going to do it, even if it means being sick at the wedding. If they can get me in to do the port tomorrow or Friday I'll start chemo Tuesday, but that seems unlikely given how packed the schedule already is.
I don't feel sick yet, but I do feel exhausted.
So I go tearing out of the house in the mismatched clothing I was wearing to walk the dog at 6 this morning, no shower, just gross. The fact that I was "working" this afternoon entirely left my brain. I got really lucky and didn't accidentally stand anybody up for a meeting. I made it in by noon and they walked me straight into the exam room to see Wexler and told me we could do the paperwork later. They were highly apologetic and this is really the only snafu I've had so far.
She agreed sooner is better, but the first drug they are going to give me is apparently notorious for eating through skin and collapsing veins and basically not worth the risk if you don't have the port in.
So they are going to try to get me in earlier to get the port, but we're not sure if it's going to happen. While I was there they gave me a tour of the chemo rooms, which are not fancy but seem quite comfortable. They have two private rooms which are first come first serve, and then one bigger room where there are four big comfortable chairs and a the nurse who manages care there. They have wifi and a DVD collection and room for friends to sit with me.
For now, my schedule looks like
Monday 10:15 - meet with a nurse practioner/nutrition specialist who will go over the drugs I'll be on, possible side effects, and recommended nutrition during chemo.
Monday 3:00 - echocardiogram to assess risk levels for one of the drugs that can destroy my heart
Tuesday 1:30 - port placement (unless they can schedule it sooner)
Wednesday 8:30 - biopsies for the spots that popped up on the MRI if they can find them on ultrasound - one lymph node and one likely new tumor
Still to be scheduled - full body PET scan to see if there are other tumors hiding elsewhere, and a brain MRI. Neither of these are required before I start treatment, they are just to set baselines to watch over the next few months.
If they can get me in to start chemo on Wednesday afternoon or Thursday I'm going to do it, even if it means being sick at the wedding. If they can get me in to do the port tomorrow or Friday I'll start chemo Tuesday, but that seems unlikely given how packed the schedule already is.
I don't feel sick yet, but I do feel exhausted.
Thanks for sharing all of this with us. I am really glad you are on top of things, and I'm glad you were able to get to your appointment. All things considered I don't think it would have mattered if you had stood someone up for an appointment. Your health is more important. xxoo
ReplyDeleteYes - they definitely would have forgiven me. I am extremely lucky to work with a fantastic bunch of people who have been supportive across the board. :)
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