We had a life and a plan. We bought an RV and planned on being the nomads we always dreamed of. We even did a trial cross country jaunt from Connecticut to Nevada and loved it. And then Steven was chasing a paper plate the blew of the table this July and when he went to go pick up off the ground he bashed his head on a piece of metal when he stood back up. No big deal (well, a little bit of a big deal) he had some bleeding on the brain (he bashed his head good). And then big deal when they found a plum sized tumor in his head.
Even bigger deal was brain surgery. Which went very well. They removed all the visible tumor and while he had some weakness on his left side he was almost ok and i thought well ok, he'll heal and then we'll be happily ever after.
And then the biopsy came back on the tumor and they said Glioblastoma.... searched my memory banks for a definition of the word and came back with nothing. Then they said the cancer that John McCain died from. And still then I didn't freak. I thought John McCain was like 70, Steven is only 47, he will be fine, Neurosurgeon said he was the best case scenario. He hasn't had a seizure and he is strong and he came out of surgery well. I was like we got this.
And then he started reading things online and got scared. And then he pushed the dr's for how long he's got left. And they said average is 18 months. And still I said no, that is for old people, or for people that they couldn't get the brain tumor all the way out or couldn't operate at all, 18 months is for people who are sick with other diseases or came out of surgery paralyzed or otherwise damaged. 18 months is not for Steven.
I was the optomistic one. Chemo? Radiation? we got this. 5 am we take pill 1, 5:30 pill 2, 6 am leave for work (me) drop him off at radiation on the way. He gets a coffee and if he is up for a little hospital breakfast and takes his 7am pills. Then he does his radiation and sees from 1-4 drs depending on the day. We have a medical oncolgist, radiation oncologist, a palliative care dr, a therapist, a social worker, a psychiatrist, and physical therapists. Then he gets to come home and rest. til i get home sometime between 7 and 9pm. I make dinner (sneaking in vegetables as much as I can) then we talk a bit, and then bed. Wash, rinse, and repeat Mon - Fri.
Sounds manageable right? wrong. I am losing it. Steven went through bouts of depression like i have never seen and frankly I might be just as depressed or worse if I were him. My heart breaks when he suffers. And then I say "chin up!" and we are ok, and no one gets any promises about living on this earth longer than each morning when we wake up.
His steroids gave him myopathy so now he is suffering through serious joint and leg pain that now opens the door for serious medications that have a tendency to turn him into a zombie.
Then there are the falls - 2 times in last 3 days. Headaches that scare the bejeezus out of both of us, but I am not allowed to be afraid. My job is to be "its nothing, you are fine and if for some reason you aren't fine we will fix it." My job is to be strong and clean up after him and go to the pharmacy 8 times a week because the constipation from the pain pills and the chemo is truly a brutal side effect and now I know what an enema is. Oh, and try to figure out how we are going to survive financially. My job is to make the holidays bright and special cause this might be the last, but when i walked into a store this weekend and Christmas music was playing i burst into tears and since then, the thought of christmas makes my eyes fill with tears.
He is working on a bucket list and don't have the heart to tell him that we can't afford any of these things. Did i mention the brake light came on today while i was running errands at lunch? I am praying that it is nothing, cause i have no idea how i am going to fix that when i can't even pay the electric bill that showed up today. I can't even imagine telling him the light is on because i also need to not stress him out! He has enough on his plate and when his blood pressure rises his headaches get worse, so best just keep it to myself and pray i figure it out.
I am out of vacation time at work, so last Thursday when I had to go to palliative care and meet with the social worker to hopefully get some help, they docked my pay. Cause that is EXACTLY how someone who has worked for the same company for 18 years deserves to be treated when her significant other has brain cancer. And we are talking 1 day over. Not like i have been shirking work since July. (ok, i cry sometimes at my desk, but i still get my work done and take pride in that)
So, no dreams of the future, terrified that I am going to lose him, out of my mind that i am going to let something fall, that we will be sitting in the dark, eating dented cans of cat food cause we are on a path of financial ruin. Hell, not on the path, I spend my days sprinting down the path towards total destitution.
His mama is older and helping as much as she can, but she doesn't drive and isn't rich and is taking Steven's illness worse than either of us. The rest of his family is fringe, my family is difficult, my stepmother doesn't want me around because I talk about "unpleasant" matters. Like cancer and enemas and getting docked a day of pay. And i don't know how to reach out for help. So I decided to post a rant. Let it all off my chest.
So thanks for listening to me rant. It helped. I have to run now, gotta go Thanksgiving is 2 days away and i need to pick up a turkey. :) Cause this is going to be the best dang Thanksgiving ever! Have a good day wherever you can. <3
