Starting to get my life back – well maybe

Since my stage IV diagnosis and then stroke back in September 2016 this has been a very rough road for me mentally and emotionally.  I've been moving from treatment to hospitalization to steroids to control side effects to brain tumor.  From there it was brain surgery which resulted in loss of feeling/mobility in right leg and foot.  Then the 10 day post op MRI showed tumor regrowth so radiation and Nivo maintenance immediately.  Then I had a seizure which resulted in a 6 month driving ban.

While all this was going on my short term disability ran out.  I was able to work out with my company that I can work from home 4 days a week and come into the office one day.  I live 32 miles north of Boston so it takes 1.5 hours to get to work each way during rush hour.  My job is flexible and I can do most of it remotely but it is sometimes better to be in the office.  The meds make me tired and quite honestly this cancer journey had made me a bit cranky.

It has been very hard to rely on others for care and for the basics.  I've always been very independant and I like to be in control of myself.  The brain surgery and seizure took that away.  Some days I feel like a caged animal and other days I'm OK.  I don't like begging for rides.  

Gaining 20 lbs from the steroids has been tough for me as I've always been fit.  Exercise is how I destress.  It's hard to run when your leg and foot are numb.  So the pounds stay on.  I also eat when I'm stressed so naturally I have no desire to diet right now.

Losing my hair from the radiation was also hard for me.  I got a wig but I haven't felt very good wearing it.  The entire time it is on I am waiting until I can take it off.  It's finally starting to grow back but the bald spot is very obvious as is the scar from the surgery.

The positive here is that I am finally starting to feel like I'm getting my life back.  I still have tumors and I'm still on the driving ban but I'm on Nivo and so far am tolerating it OK.  I'm working and that is going OK.  I'm only on three forever meds (thyroid hormone, keppra so I don't have seizures, and enoxaparin sodium so I don't stroke again).

I never expected that cancer was going to strip me of so much.  I guess I'm just happy I'm not dead.  The stroke left me with no long term deficits because luckily my husband checked on me and got me help in time. The oncology team here is excellent and luckily I responded well on the ipi/nivo and nivo alone treatment.  The neurologists at Dana Farber have been excellent.  There are three of them.  One is a surgeon, one a radiation specialist and one a medical neurologist.

As I near my 40th birthday I hope that I'll continue down a positive path.  I went on my first run/walk since Sept 2016.  (With my slightly numb foot)  The 20lbs will come off.  My career will continue to move forward. I hope I will survive.

All of you with terrible side effects or scars you can't stand or just having a rough day… I know how you feel.  You aren't alone.  We will hopefully get our lives back and enjoy life.  I've taken a long pause and now I'm moving forward whether cancer wants me to or not.  I will take back my title as laundry queen although I'm going to continue to let my husband keep track of the kids schedules and cart them to all their activities.

Thanks for all your support.  I definitely couldn't have gotten this far without you.

Best,

Jennifer