One good thing about being an ill shut-in is you don't see too many people, and therefore you don't HAVE to shower as much. 2 weeks after my one and only dose of chemo I too my second shower, and there was no longer any denying or hiding it.
Hair was just rinsing off my head in clumps, so I got out the old clippers. With major help from Vanessa, I went all the way. Gotta say... it's kinda fun, and feels pretty good. I need to keep reminding myself that no, that's not wet hair on my pillow.
At first I thought “Ok, this isn't so bad...” Then, as it fell out, “Ok, maybe an extreme part?” Then there was no turning back after the second shower.
The best way is to accept it, and know it'll grow back. Focus on the good things, a forward recovery. And take more silly pictures.
These are still tough times for me. Please get involved, I’d love your help.
YouCaring: Keep up with my progress, and know that any donation will help me out.
LotsaHelpingHands: In the Chicago Area? There’s some real life needs, too (cleaning, meals, etc.) That I just can’t do yet.
Join TeamEd on Facebook! Easy way to stay up to date with my progress, and a little more extras on the personal or silly, stress-relieving side from me.
Not great news, but here's how Ed feels, and is trying to handle it all. TeamEd on Facebook: https://www.youcaring.com/external-link.htm?target=https-#--_--_...
Transcribed:
Two weeks ago, over the course of a few days, I went from feeling well-rested and more energetic to being huddled in a ball in my bed, under my down comforter, with violent shakes, chills, and a fever. The next day I was tired and “ill,” but most importantly I had turned a ghastly yellow. The jaundice came on fast, and off to the Cancer Center we went on Friday the second.
We assumed we’d have to go to the ER that night, but we’d hoped to catch one of my doctors before they left. We spoke with my surgeon before he left the cancer center, and let him know that some research we did into the drugs I was taking (my pills for pain, and an anti-depressant my ocno recommended), and found a few suspiciously coincidental symptoms. He focused on the cancer-related medical knowledge he was used to, and we went along with it. Cover our bases. The timeline added up, we hoped desperately that we were right.
He helped us check in to the ER, and I ended up staying in the hospital for six days. First, they had to get my jaundice under control. Next, they had to figure out what caused it. After four scans and a biopsy, it was clear.
More. Cancer.
When I heard this, I was rocked. I literally saw my life flash before my eyes. First I laughed in my oncologist’s face. Then I had a total body cry. I’ve never asked “why me?” but I did ask “are you EFFING kidding me?” All this surgery, all this recovery, all this effort, my missing organs, the last two months of uphill struggle… What was the point?
I shared a big cry with Vanessa and my best friend, Laura, who were in the room at the time. We sat and looked at each other and all had the same thought - Ed’s going to die. They gave me some time alone, and I sat with this for a while. When they returned I’d cried it out, and then we got busy planning.
Last Thursday I was released, considerably less yellow than even the night before. It felt good to not only be out of the hospital, but to smell fresh air, see non-medical-worker humans, and to EAT REAL FOOD. Because of my restrictions, food in the room wasn’t great at all, and I, in fact lost MORE weight. Once I got home, I sent my brother (who stayed with me that day) to the store for fresh, organic fruits and veggies. I couldn’t wait to cook and eat real food again!
So I’m out, and despite a setback this week due to overextending myself with my family last Friday, my energy is back on the upswing. This is important, because I have a lot of work to do.
The next step is to put me back on chemo, which I start next week. I’m not crazy about it, especially since it will be a 2-chemical cocktail this time, as opposed to one like the first time. This means I’ll likely have more severe side effects, too. The survival numbers for stage four pancreatic cancer are not good. Remember that I’m also a double-rare case, having already been down this road. The work I have to do isn’t just sit and take what’s given to me. I will fight the whole way, and I’ll tell you all about what that means.
So, what can you do? Hell yes, my supporters out there are strong, and they care about me. But maybe they aren’t sure exactly how to help. This week I’ll be talking more about EXACTLY what you can do to help Vanessa and I get through this. Please remember that while she is my girlfriend, we do live together, and she is an impressive person, she has a life and a career to keep on track, too. She’s not my nurse nor especially not my mom. We’re a team, and we need you.
We’re reorganizing the volunteer side of this debacle, and are considering a new fundraiser. Please stay tuned to the Team Ed news source of your choice so you don’t miss a thing: YouCaring, LotsaHelpingHands, or TeamEd on Facebook. If you want to check in, or just send well-wishes, please use YouCaring or TeamEd on Facebook. I appreciate and accept all the positivity coming my way, but please try not to text me or Vanessa for a personalized update. There’s so much going on, and I only have so much energy to use in a day, that all the texting becomes stressful. Thanks for understanding.
I’m about to really join the fight of my life, and I need you to help me do it. Chances? Sure they’re slim. Hope? I got hope through the roof, and my posse is strong. Thanks for watching, feel free to leave a comment.
Trying to draw more, and I'm definitely walking more, but this recovery has it's own timeline, and has been really difficult. Last week was full of tough days, lethargy, and lots of negative thoughts: places I'm not used to and do not thrive in. This week? I'm optimistic, and taking it as it comes. Agonizing for a genki go-getter like me, heh!
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While my energy levels are unpredictable, and I'm not quite ready to go back to work full time, I've been building up to it with this piece. Little by little, everyday, I am healing. It's just hard because I want to do more, but my body has limits.
I have been indulging in a lot of "toy therapy," including pouring over pics of old toys and YouTube reviews of them, too. MASK was an amazing line of brilliantly-engineered toys that I always loved, but hadn't thought about for a long time. Mmm, toys...
I am home. I was released from the hospital Sunday afternoon, and while it's good to be here, it's been rough. I have a lot of healing to do, a new diet to deal with, but at least diabetes is getting figured out. I had an amazing team of doctors and nurses, and my surgeon said it was THE hardest procedure he's done in his life.
I don't know when I'll be able to work on anything again (I know, it's not a priority, as people keep telling me), but I'm looking forward to it. Until then, I'll be over here shuffling around, and immersing myself in toy therapy.
Yes, it's all true. If you'd like to help me out, please go to my YouCaring page for updates and to donate. There's also a Facebook Group if that's more convenient for you. Sincere thanks!
Yes, it's all true. If you'd like to help me out, please go to my YouCaring page for updates and to donate. There's also a Facebook Group if that's more convenient for you. Sincere thanks!
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