The community center didn't twist my arm to hard. There was no gun to the head.
They simply said if I wanted my first grader to play with 2nd and 3rd graders I had to coach.
I said okay, with d pledging to be by my side.
Well, life happens. D can't coach. I would probably kill myself trying to talk and walk at the same time, traumatizing the kids with my agonal breaths in the mean time.
I'm sure the sight of me struggling to breathe, ready to pass out and still coaching attached to an oxygen tank would inspire someone else to volunteer, but not this season.
Jon has taken over: torn achilles, boot and all.
I assist. I manage. I supervise.
Maybe someday I'll get back on the field.
During basketball season I stepped in once to cover a passing drill, but even the small increase in movement while talking loudly was beyond my capabilities. I did it, just in a cold sweat with a lot of huffing and puffing worrying that any second the the world would go black, my bladder would let loose and I'd go into respiratory failure in front of 60 kids and their sidelined guardians.
I have high hopes I'll be back coaching this summer (with help of course). It's looking like I'm on track.
The bone density scan I had came back......... NORMAL!
Do you know how long it's been since I heard that? I don't. It's been that long. Even with all the steroids, radiation, chemo, early menopause I have normal bones.
My appt with the home team went well. I have fab labs.
We worked out a plan to keep my central line from clotting. I will now spend the majority of my day (3x)flushing two of my three lumens with heparin.
The third is all ready clotted and would require tnk to bust that clot and work.
I find I'm more compliant with these burdensome therapies if I attach them to an established routine.
I have a basket with flush supplies in the bathroom and will flush the lines when I brush my teeth.
To protect my skin, I put sunscreen on in the am when I brush my teeth. Then I strategically place bottles of sunscreen (or eye drops, mouth wash, whatever) where ever I commonly am for convenience: the end table, night stand, or center console in the car for example. This way I may use my eye drops at least two or three times a day since there is no way in hell I'll ever manage to coordinate six plus hot compresses.
Do you feel me or did I go on a tangent there?
In conjunction with my appointment, I was able to bring the small toy store I'd accumulated for Andy (thanks Dr. Houde and valley orthopedics. He'd been wanting the moon sand and wouldn't let me leave without setting up the hoop).
I'm finding it easy to support andy, but difficult to help the family.
I can't relate. I've been on the otherside so long. In some ways, I don't know if I want or can relate to the family.
I hate seeing how stressed and scared the family is.
As a patient, I can focus, keep my eyes on the prize to get well. I ignore the stress it places on my family.
I'm not sure how capable I am of supporting the family, but like anything, all I can do is my best.
With this being said, I'd love to hear suggestions as what may make this easier on the family and caregivers.
Andy did spike a temp and is currently taking antibiotics. He has some mouth ulcers but is generally tolerating the chemo well. He will be going to Boston Childrens in the next couple of weeks to undergo his transplant.
The family will need a garmen for travel (it's vital), gas cards and meal cards are also helpful. Andy can still receive cards at ChAd 1 Medical Dr. in Lebanon, NH.