Caution! A big bottle of Whine!
Caution- you may need a big plate of cheese to go with all this whine!! But its not all bad, there is definitely some reason for the season stuff too!
My motivation to blog remains a bit low. Perhaps my mind is mirroring the decline in my body. Its been a very tough few weeks since I started this “new”, old chemo regimen. Ironically, the downturn in my quality of life is not due to the chemo, but rather in unexpected side effects from the disease itself. Cancer has a really dark sense of humour. I’ve swollen up, from lymph edema, like an overstuffed sausage. Its painful and debilitating and putting relentless pressure on body parts that should get a pass from breast cancer. Days are spent mainly on the couch trying in vain to position my body to minimize the edema. Unfortunately, due to where the edema is located, a position good for one area wrecks another. I get up sparingly, and when I do, I can’t wait to get back off my feet and relieve the pressure. I try to “budget” my time up, weighing what I most desire doing (throwing football after school with the boys- Luca’s fave thing in the world right now to do with mommy), with what must be done and what needs to be done. Obviously TONS of stuff is not getting tended to, oh well.
And in the process of all this (and hopefully not due to any spread), my low back has been destroyed. Back pain is my constant companion. Despite the narcotic patch, despite extra medicine I get up to take in the wee hours every night (after writhing around in pain for a good hour- between the swelling, the burns from radiation which just are super slow to heal, and my back-there are no good sleeping positions left-grrrrr) I cant get relief. Getting out of bed (usually 9:30 to 10:30, except 2 days a week when I get the kids off to school and then usually fall asleep again shortly after the bus comes) is comical. Walking is slow and awkward. A specialist I saw last week for my edema recommended checking into zero gravity chairs. My dear friend Britt took me yesterday to a back store to check them out. She sighed like she was in heaven within seconds of sitting in the first one and tilting back (they are like weird recliners that essentially put you in an optimal, but odd, position, to provide the best position for your spine). I, on the other hand, experienced chest pressure, difficulty breathing (also a new development, its gotten bad, so I go get an echo Wed), a tremendous increase in lymphatic pressure in my abdomen, and some back relief. We sat in a bunch. Britt was in heaven and I managed to find two that provided some relief and didn’t exacerbate my other issues.
It was really kinda depressing. I was unrealistically hoping for a panacea of a remedy. A quick, easy and reasonably priced fix. A miracle thing that would make my pain go away, minimize my swelling, maybe even make me feel (gasp!) good. Oh, and look somewhat stylish, not clash with our other decor and NOT cost an unbelievable amount of money. Too much to ask? Apparently! So we left the store, me rather down and fighting a weepy feeling, and Britt explaining to me that the goal is to bring my discomfort down to an acceptable level, not zero. We agreed that more test sitting is definitely needed (hard to do with chemo weekly and also gobs of other appointments to address all my S/E- it is an insanely frustrating spiral) that we need to check the internet for lower prices, and because I need relief ASAP, perhaps some therapy is needed in the immediate future cause I really cant go on like this for too much longer. I am worn thin. I am losing the ability to help myself when any obstacle stands in my way. I think we are beyond the point of reasonable (in terms of time, impact on my quality of life, and financial cost) fixes to any of my problems. I see a future of “choices” that are really just the lesser of evils.
I’m not this grumpy all the time. I still find inspiration and joy in the work GoJenGo is doing. I still gather strength from the impact we are having on our local, in-need survivors. As many challenges as I have, I have all of you, a TREMENDOUS support network to help me along. And I am so grateful that all of you pitch in to help those women and families that don’t have my incredible network of support! We are currently helping spread the joy again this holiday season. We’d love your help!
Please sign up for Go Jen Go Operation Spread the Joy! – here’s how it works in 3 easy steps:
1. Click this link to go to our invitation page on VolunteerSpot: http://vols.pt/CaBBg5
2. Enter your email address: (You will NOT need to register an account on VolunteerSpot)
3. Sign up! Choose your spots – VolunteerSpot will send you an automated confirmation and reminders. Easy!
Note: VolunteerSpot does not share your email address with anyone. If you prefer not to use your email address, please contact Meredith McGough at firstname.lastname@example.org and she can sign you up manually.
Thank you for listening, thanks to those of you who have helped our fam with meals and errands and thanks for helping GJG! J