Thursday, September 15, 2016

Self-Care for the Caregiver

When Wes was first diagnosed with brain cancer, I promptly gained 40 pounds.  I did.  It took me about five minutes to do that. 

Since then, I've been on a journey to learn self care skills and healthy coping mechanisms.  I'm not an expert by any long shot, but I have gotten to a better place.  I have an arsenal of self-care tools that I'm using to deal with the stress of life with a partner with terminal cancer...

(These are in somewhat random order and are just what I am personally doing...others will have other ideas/experiences).

1. Prayer.  More prayer.  Sometimes when I get very very depressed I have been known to lay in bed, take a nap and listen to a recording of the Psalms.  Morning and evening prayers, goes without saying... getting to Church as often as I have the energy, surrounding myself with others who are praying and who are praying for us has been so uplifting.

2. A crochet project.  When I first got diagnosed, I started to make an afghan, and I'm still working on it.  I don't crochet every day, but in my mind, this project is the thing that I started because he is sick, and it's for me to feel better.  I like the colors.

3. Listening to music that helps me to cry.  I have some songs that I call my "crying songs" and they really help when the tears get clogged up and won't come out.  Sometimes a caregiver NEEDS to cry. 

4. 12 step program.  I joined OA. I quit drinking any alcohol, too. Those 40 pounds I gained are gone, and some extra besides...with more coming off.  Trying to be as absolutely healthy as I can is a form of self care.  Because of the stress I am under, my body does not have the resiliency to deal with crap non-foods like sugar or junk or wine.  No more toxins.  Avoiding these stressors that I CAN CONTROL gives me resiliency to deal with the stressors I cannot control. 

5. Excercise.  I've just re-started an exercise program beyond just going for gentle walks.  I find the endorphins absolutely fantastic. I've had times when I got to a pool to swim, and times I have not.  Now I'm taking up jogging again.  Life is always better when I am working out enough to really sweat and breathe hard, because: Endorphins.

6. Going to the doctor or dentist or eye doctor.  Last February when my back went out AGAIN, I started seeing a chiropractor....and that's when things really started to turn around for me.  I was in so much pain before, and I just accepted it.  I could not walk more than five minutes without my hip hurting.  Turns out it wasn't fibro pain, it was because I needed chiropractic care.  I have noticed that when Wes is having something big going on with his health (big=scary) my back tends to flare up, because I carry my stress there.  Since I am the only driver in the family now, I CANNOT let my back go to pot again.  Same with staying on top of my other meds and health conditions:  I don't have the luxury of neglecting myself...I am needed and I need to be as well as I can be.

7. Stuff I just plain enjoy and don't need to apologize for, like reading fun books or watching a fun movie, or stupid comedy skits on youtube...it is OK to zone out sometimes.  A caregiver needs that. 

Caregivers don't have the luxury of ignoring their own physical, mental, emotional or spiritual needs.  We have to actively do things to make ourselves fitter, stronger, healthier and more able...even when we have our own health challenges to deal with.  It is no more selfish to care for oneself when one is a caregiver, than it is for a soldier to do PT exercises in order to be fit and strong.  Self-care must be an intrinsic part of the role of caregiver.  

Monday, September 05, 2016

Update on Wes's Brain Cancer

We have an update...months have gone by. Wes has been on Temodar (chemotherapy pill) five days out of every 28 since last February, after 12 weeks of recovering from brain surgery in October.  At that time, the neurosurgeon was able to remove all visible tumor.
 In July, his MRI results came back questionable. The doctor said that it was either swelling and inflammation (which steroids would fix) or it was new tumor regrowing at the same site where his surgery was last October. Wes opted to go on steroids for a month, and then to have another MRI for comparison. We were hoping for the best, but got bad news instead: even more growth was seen, despite the steroids.

Wes will have another brain surgery in the third week of September. That's as long as his oncologist would give him to finish a big goal at work. There's a small chance it will be sooner, as we see the Neurosurgeon on September 9th, who will tell us what he wants to do, and get Wes scheduled for the surgery.

What this means: It means the first type of chemo has most likely come to the end of its usefulness. No more Temodar. Pathology report after the surgery will reveal whether or not the immunotherapy vaccines are doing any good at all...and whether Wes continues to receive those depends on that....and it will be time for the next type of chemo available to fight this beast. Fighting only buys a bit more time...this IS terminal cancer, and it seems to be God's will for us to walk this journey to its natural end. God is with us, and God is always good. Wes and I are each in a good place spiritually, although we are also grieving (as are our grown kids).

We thank all our donors from the bottom of our hearts for how much you have been helping us. The medical expenses are ongoing and surgery will be a big bump.

We are trusting God for the outcome, knowing that Wes might not recover so well this time. So we are trying to squeeze in some nice dates and get out into the early autumn nature in these next few weeks. And we hold each other. And we cry.
"Not my will, but Thine be done."

Here is our fundraising site:  https://www.gofundme.com/5jfxe4