This year has been a long journey of learning to acclimate myself to a new – everything – it feels like some days. Recently I was in a group where we were asked to describe ourselves using a series of adjectives. It was a confusing exercise, and at first no one did very well with…
Category: Lymphoma
Missing In Action
It’s been a very emotional week for me, not least because my doc has had me cut back on my Oxycontin to half of my previous dose, although I also have 5mg Oxycondone I can take for breakthrough pain. I’ve done this step-down twice already since ending chemo, and I agree that it’s necessary to…
Testing Myself
As my recovery progresses, I find that I am ‘testing myself’ many times each week to quantify how much independence I’ve recovered. A few months ago I was sleeping around 18 hours a day. I’d sleep 12 hours at night, and take two naps during the day. I needed all that sleep, but now I’m…
A Return To Baking
Today I’m going to make some cookies. I’ve entered myself into the Minnesota State Fair under the Decorated Cookie category (this year’s theme: Minnesota Flowers) and I’m raring to go!
I’m planning on making up a bunch of royal icing using meringue powder (so it will keep, in an airtight container, for up to a month) and I will practice a few different types of flowers and decorating techniques in the two months before I have to turn in my cookies.
Things Change SO Quickly
I had big plans to make a chocolate cake today.
It doesn’t sound like a huge deal, but it is. Getting downstairs isn’t the marathon it was just a month ago, but it’s an effort. STANDING is harder than anything, and baking is more about standing than anything else. Silly things like lifting up the mixer to move it over by the electrical outlet, carrying eggs, sifting flour, etc., are very difficult when the back is so painful.
Game Of Alones
It’s a good season of GOT, Gerry would have loved it. I’m loving it. It seems a lovely farewell to a beloved TV series; I wish I had had time to give Gerry the same kind of farewell. I still wake up in a cold sweat from dreams about Gerry dying with no one around him but medical staff, no family, no me. I was functionally immobile from my reaction to strong chemo, but that doesn’t lessen my guilt at not being WITH him at the end. Just because you know something’s out of your control doesn’t necessarily lessen the guilt.
Chronic Pain Revisited
After the past 9 months I’d be happy never to see the inside of a hospital again, but part of me is also wondering if a knee replacement is in my future. I see an orthopedic doc in a few weeks, the same doc I saw 2 years ago who gave me a shot in my knee that helped quite a bit, and I’m curious to find out if this knee pain can be surgically remedied.
SPRING!
Today I celebrated the arrival of Spring with a little walk, and I’m insanely proud of myself. I got up and dressed, went downstairs (then went up stairs to use the bathroom, then downstairs again, a marathon!) And then, with the help of a friend of Andy’s who was over this morning, I took my…
Waiting & Patience
Yesterday I discovered an online community, based in the UK, Macmillan Cancer Support, for cancer patients and their caregivers. I may have run into this site earlier, but it just didn’t register in my brain at the time.
Macmillan seems an amazing resource for folks who are seeking answers (and also seeking online companionship on what is often a very lonely path) and I’m glad i found it. I’ve already had a lovely response about recovery times from CODOX-M from a fellow who was also on this drug regime, and I feel comforted.
Thanks, FDR! Thanks, Obama!
If it hadn’t been for SS survivor benefits, I would never have been able to attend college after my father died when I was 16. Ironically, the same is true for Paul Ryan, who has been one of the loudest voices against this benefit.
In fact, the benefit for child survivors of a deceased parent has changed, it used to continue while the child was in college, now it just ends at 18, making college just a dream for so many kids who have lost a parent and aren’t genius enough to earn scholarships.