I don’t feel like blogging at all right now, which means that it’s probably the best time than any to blog.
The last few days have been rough. Starting Wednesday night, I started getting nausea before bedtime similar to when I was doing my first round of chemo in the hospital. Thursday morning I was so weak, I had to sit down to brush my teeth and pretty much had to drag myself out of bed which lead to me getting to chemo an hour late.
Even though I buzzed my hair 2 weeks ago, I’m still losing a lot of it. This is what my pillow usually looks like in the morning. It’s a lot more manageable than having normal length hair but still frustrating to see.
I’ve also been getting slight bouts of nausea about the time I start chemo as well. I’m thankful that we start the pre-meds with anti nausea IV drips which get rid of the feeling within half an hour.
It’s been hard to go to bed feeling crappy, then wake up feeling crappy, but have that feeling increase as the days go on.
Nothing much happened on Thursday besides the fact that I got a window to watch the rain during chemo, which was the highlight of my day. It’s the little things 🙂
Lately I’ve been feeling kind of isolated. I haven’t been living at my place for 5 weeks, haven’t seen my dog since then either. I started treatment 4 weeks ago and because of that, I haven’t been able to give hugs, kiss my girlfriend, or really have any sort of physical touch with anyone besides the nurses through their gloves while they work on me.
My dad’s been with me every step of the way, I’ve had people visit me, text, and video chat with me on a regular basis but that sensation of physical touch is really missing. Although I have company to occupy my mind and my time, it really feels like I’m in a display case where I can’t be touched and it just feels lonely.
What’s interesting is that I’ve been wrestling with these feelings for the last few days and on Friday morning, a volunteer named Jlor came by my chemo cube offering free hand massages.
I immediately said yes because I’d get the chance to talk to probably the only other Asian guy within 3 floors of the building and the change of pace of just sitting in my chair poking on my phone was welcomed.
Jlor is originally from the Philippines but moved to California with his mom when he was young. He wanted something different weather wise so he decided to move to Minnesota of all places for college and has been working at the Mayo clinic for the last 6 years doing breast cancer research and phlebotomy.
He said that he wanted to give back since he spends so much time here and so he gives hand massages for two hours on Fridays.
I really enjoyed his company and the physical touch interaction was what I needed that day. He even gave a hand massaged to my dad too.
My friend John is currently going through chemo therapy right now and gave me some tips about the Neulasta patch. He suggested that I buy some lidocaine cream to numb the area before they attach the patch to my skin. I need some practice because as you can see in the before and after picture, I was totally off where I applied the cream and where they put on the patch.
How the patch works is that they apply it right after you’re done with chemo and it’ll insert then retract a needle into your skin. 24 hours later, the patch will administer the medication. 2 hours after that, I can remove the patch completely.
The nurse was getting the patch out of the box and I was bracing myself for when she applied it because I thought there was going to be a long needle sticking out and she’d just slap it on my stomach. There wasn’t.
She stuck the patch on and it started beeping.
Me: Oh I thought the needle would shoot out of the thing right away.
Nurse: Oh no, you have to wait a few minutes for that to happen.
Me: What do you mean a few minutes? The anticipation is killing me!
Beep….beep…beepbeepbeep *SNAP*
Me: OWWW
It felt like a rubber band snap
I looked online and I’ve seen estimates between $5,000 – $9,000 for one dose of Neulasta which is crazy. I think I’m getting 2 total, which is the cost of a new car.
I’ve had my PICC line for 5 days and it’s been working like a charm. No pain whatsoever from pushing chemo meds through it which I’m very thankful for. I do need to get the dressings changed out every 7 days and so we headed to another part of the building to get that done.
The appointment was about half an hour long. The nurse, my dad, and I needed to wear masks during the procedure to reduce the risk of contamination since there is a tube sticking out of my arm.
It was pretty easy, the nurse removed the old stickers and wrappings around my arm, applied alcohol wipes for a few minutes to clean the area, then put new wrappings around it.
The sensation of seeing the PICC line just dangling from my arm like that was very odd. I have had some people ask me what it feels like. It doesn’t really hurt unless I bend my bicep all the way, just feels sore. Right now it’s kind of itchy actually.
It’s been a long week of basically the same thing every day. We got into the car to drive back to Minneapolis and I was determined not to allow the chemo meds to get the best of me since I’ve been passing out for 2-4 hours every time we’d get back to the hotel. Nope, the moment I sat down in the car, my legs and arms turned to Jello and I was out for the count. You can thank my dad for the picture.
When I had vocal cord surgery back in 2000, I felt like I was living in a “bubble” or aquarium b/c NO one knew how to handle it! Being a talker, everybody was “dumb”founded when I couldn’t respond to their questions or comments. Only 1 friend really got it, so she would call me up and just talk…she would tell me the latest news, jokes, things going on in town, and updates on friends. I could never repay her kindness. She truly understood and would say, “I know you can’t talk, so you’re my captive audience!” Even though I couldn’t even laugh, my heart would leap for joy! It’s so painful to feel alone! My eyes filled with tears today when I read your blog! I get it, Andrew! And God bless Jaylor and his massage! Hang in there, buddy!!!
It was so nice to meet you and your dad on Friday! I’m glad to know that the massages help in other ways, too, besides for relaxation. It’s sometimes easy to forget that the patients we see for a brief moment of our day continue to fight with their diagnoses after we leave the room, so thank you for being brave enough to share that with us.
Also, after I left Gonda 10, I immediately started reading your blog, and as soon as I saw that picture you put on Reddit, I slapped my forehead. I started putting two and two together and noticed the background of that photo as the Methodist Hospital. I couldn’t believe I didn’t see it before! I just met a famous person and I didn’t even know it!
You and the other volunteers at Mayo are a serious blessing. Thank you so much for what you do! I’m glad you were able to check out my blog. The fact you saw my Reddit post is really funny. If you didn’t see the blog post where I became Reddit famous this is the one: http://loosyourselfabroad.com/2018/06/27/adjusting-to-my-new-chemmy-existence-and-the-unexpected-reddit-post/
We’ll be back for another full week of chemo on Aug 6 if you’re volunteering that Friday.