I think I’ve been avoiding posting bc I want to just push through the end. I have one more infusion. Wednesday will be the last infusion in the center, then I bring my pump home for 46hrs(this is the part I dread the most) and on Friday I go back to the infusion center to get disconnected. The dread for going back tomorrow and feeling awful for the next 7 days is pretty intense, but it definitely helps to know that this will be the last one. I don’t think it will be real to me until that pump is out. This also doesn’t mean the end of my cancer journey. I likely have several months for my body to recover from fatigue, taste change, and peripheral neuropathy. Also, there are the blood tests every three months, scans every six months, and annual colonoscopy for the next 5 years. So I suppose it will be hard for me, as someone who is cautious to celebrate things that are uncertain, to consider myself cancer-free. I do appreciate the alternative phrasing of No Evidence of Disease, or NED, though. That seems a lot more realistic to me. Things I will celebrate: my first meal that I can taste fully and having the feeling back in my hands and feet. I’ll let you know when those happen.
What have I been doing for the past weeks?
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Going to the ER and hospital on my birthday for a UTI that put me at risk for sepsis. All is well now after a night in the hospital and some antibiotics.
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Getting a diagnosis for Colette related to the gene found in hers and my genetic testing. She is officially diagnosed with Loeys-Dietz Syndrome Type 2 with a mild presentation. This means she is at a much lower risk for aortic dissection and all the complications that can come with this diagnosis. Her aortic root and aortic branches look normal, but we will continue to monitor with regular MRAs and echocardiograms. She also is diagnosed with POTS. She is currently in physical therapy for her joint and muscle pain that she has been experiencing. It is related to her LDS and POTS, but also her muscles can’t keep up with her growth rate, so that is contributing as well. She is 13yrs old and 5’7”.
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Making lots of doctor’s appointments for myself and Colette.
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Getting the kids ready for back to school including 504 meetings and lesson planning.
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Eating a bit more food. I haven’t had a shake since the end of July.
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Dealing with peripheral neuropathy. Slathering myself in lotion and getting amazing foot massages from our caregiver/nanny/housekeeper. Just call her Mary Poppins!
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Napping.
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Playing lots of solitaire and word games.
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Napping
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And most recently grieving the loss of My brother’s dog,v Petey. I had a special connection with him bc I fostered him until we found the right fit. And my brother ended up being the perfect dog dad. He saw him through many milestones. I will miss my Petey Pete snuggles when I go to Atlanta next. And I’m sure that Winston and Nelson were there to greet him at the rainbow bridge, and they are all enjoying a romp in the fields and a snooze in angels’ laps.
