How many times can a coaster click someone up slowly to shoot them through chaos before they're required to get off?
-side note-
My daughter turned 10 on 3/13 and she is finally tall enough to ride EVERY coaster. Recently, she sent me a picture from Imagination Station where she was riding the weighted bike over the high wire. This broke me. I missed a huge moment because I'm not walking. It seems small, but the tears flowed - she came home and noticed- then asked if I was crying.---Of course I didn't want her to notice but SHE felt the need to comfort ME- in her attempt to fix it, she said "I can do it again Mom- it's no big deal."
This moment stung. Salt to the wound- if nothing else- I'm trying like hell to prevent my kids from needing to comfort me right now.
Returning to the question..... I can't stop. The coaster hasn't had a slow moment since October and every time I try to relax something bends, twists, or tosses me through another loop.
At least once a week, someone will ask me for an update. They immediately follow whatever I say with "Why is it taking so long?"
I have answers but I'm tired of saying them, moreover I'm tired of hearing them.
After Dr. 💎 recommended chemo, (2/7/24), it has been another test of patience with moments of frustration.
First, there was a delay in the note getting to my local Ocologist, Dr. Saste. Second, I had already had knee surgery scheduled and they wouldn't complete the procedure after I started chemo.
Luckily, the orthopedic surgeon moved the knee surgery to 3/6/24 and that gave me one full week to heal before my chemo appointment.
3/13/24
The delays kept piling...
At the chemo visit, nothing actually happened because there was a lot of prerequisites.
Dr. Saste, went over the recommended therapy called Cladribine, then gave me a list of "to-dos" before the treatment could begin:
Biopsy the lesions on my legs
Have labs drawn for an updated CBC
Get an updated brain MRI
Have a port implanted
Go in for a 3rd PET scan
Take a chemo education course
Wait for insurance approval
In that moment, I felt ready to get started ASAP and his list completed. I had confirmed appointments for my biopsy, medical tests, and classes for the week of 3/17- with a hope to begin chemo on 3/25. That would be the week of Spring Break, which would have been ideal.
That hope helped me with the wait that week...
Over the weekend, we celebrated Kinley's birthday with her friends. She had a sleepover with two friends who went to her birthday lunch at the Sugar Factory. The girls had fun distracting us all from the medical mess.
But I can't distract myself from answering others who question the timeline. Occasionally, I almost feel a need to defend the poor communication between all of the cancer treatment silos and crabby staff. But it sucks-Especially when you think you have done EVERYTHING RIGHT only to have more GO WRONG.
It's now Friday, March 22nd- and I had the list scheduled for this week. It was ready and set to ensure a prompt chemo start-
I had the biopsies last Friday, with the results promised in 10 days
Labs were taken the same day of my office visit (13th)
The MRI was on Wednesday
My port was implanted yesterday - with 2 more reactions to mild sedation using fentanyl ❌🤢
Finally, my PET scan happened today at 9am.
What could be wrong now? Everything seems to be on track ..... except:
insurance may not approve the chemo until Friday
Chemo can't be scheduled until it's approved
the infusion center is already booked next week...
Then, I went to attend my chemo education, and there wasn't a link in MyChart for the virtual visit.
That day, I called the Oncologist's office, only to be told by a crude employee that it will occur next Monday at 8:30.
Wait. What???
They had it scheduled for 2pm on Wednesday (again, that day). She replied "Yeah, --X-- forgot to hit send or have it confirmed so someone else has that time and it's an hour long. Your appointment is now Monday at 8:30."
I asked for a better time this week- but by that point the infusion staff already told me they wouldn't be able to start my treatment on Monday.
This means the ride is still going, it has kept me on for another spin, and from the time of diagnosis until systemic treatment, it will now be nearly 5 months.
Meanwhile- my MRI results are back- and I've grown a third spot on my ☠️ . Clearly the LCH doesn't care about chemo education- how rude.
Damn OSSEOUS structures!
🙏Tonight's prayer
- Please protect my brain because if I lose the ability to recall this stuff, I'm screwed.
-Protect the rest of me while the calander shreds time.
-Help make this treatment kill only the bad stuff.
Then above all else.......
- Help my kids forget these rough weeks- they don't deserve these moments and the good has to outweigh the bad. If I die, their last memories of us can't be THIS.
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