All aboard! Why does it seem like I’m the only one in this line?
I came home to the most amazing homecoming. I travel a lot, I’ve experienced some pretty fabulous homecomings over the years. But THIS one was so bad-ass, if it weren’t posted all over that book of face I’d assume it was some enchanted dream.
I decided to have a cancer free day my first day back home. I’d call the Dr.s: My Texas team and my Alaskan team, tomorrow. I was just sick and tired of every conversion being about cancer these days! So, I streamed some music on KEXP, unpacked, did laundry — basically shlumped around the house all day. Right away I notice that there’s something different about this radio show. They are talking about cancer. Actually, it’s ALL they are talking about. Music Heals Cancer. People sharing their own cancer survival stories or remembering someone who passed away from cancer. It was so positive and uplifting. Speaking directly to my soul, through fabulous music! I listened for most of the day. It was playing all day long — of course! So rudely broadcasted on my cancer free day.
I think this a link below to hear some of the show.
DAMN! Didn’t even know I could do that. I’ll have to go back and give it another listen.
I think I stopped listening just about the time my phone rang. An out of state number. Great. Probably some doctors or other medical related issue, it’s all part of the new normal. Instead, it’s:
Alexis with the blah, blah, blah.
I’m sorry which organization are you with?
Do It For the Love Foundation. It seems your friends have nominated you to meet with Michael Franti at tonight’s show.
I immediately start crying. Bawling like a damn baby. I’m not a fan of crying, but when I need to release some pent up emotions, they are pretty intense. Poor Alexia didn’t know WHAT to do with herself!
I’m so glad you are excited about tonight’s show she stammers on her end…while I’m sobbing incoherently on my end of the phone. We had a great talk! Here’s a link to the Foundation.
Did that work? Damn if I get much more techy I’m going to find me a new job!
I was told to meet Michael’s tour manager, Hossein at the mercantile booth @ 8:30. What?!?! I was REALLY going to be meeting Michael Franti before the show?! I needed to get sexy for my new boo! AKA. Michael Franti.
From there on it’s a whirlwind. The Crazy Cancer Roller Coaster was picking up major momentum. We (me and 3 of my peeps behind all this) meet Hossein at the Mercantile table where we were whisked onto Michael’s tour bus. I was greeted by my new boo and immediately wrapped myslef into his embrace…sorry, I just slipped into enchanted dream mode. Always been a big fan of good hugs;) He was so compassionate, present and honestly wanted to know about what had been happening to in my life. I told him my cancer story. More talking about cancer on my cancer free day? WTF! But It was amazeballs! It felt like I was talking to a close friend. We talked, laughed took some pics and he signed my vinyl record a friend of mine gifted me.
But I don’t have a record player.
Oh, I’ll give one…and she did! And it fucking rocks!
We go back to the show all in a daze. We just hung out with MICHAEL FUCKING FRANTI on his tour bus, now we get to dance our asses off at his show! It doesn’t get better than this. Until it Does.
About halfway through the show, Franti had already gyrated all his sexiness from the stage to the main floor and I still have no idea how he got up on the balcony mid-song. Seriously. He’s a damn rockstar! Hossein grabs my hand and tells me to follow him. wtf?! Wtf?!?!?! WTF is happening right now!!!!!!
I’m standing just off stage and my new boo is telling the entire audience my cancer story. I’m called on stage where I’m once again enveloped in his manly embrace…seriously it happened! (Guess I’m not techy enough to upload the video.) It was the most perfectly aligned dream sequence. He calls me on stage. Serenades me in front of a sold out crowd. About half-way through the song I rise up and start shaking my moneymaker! HELL’S YEAH I DID!
I’m pretty sure the only thing that kept me from weeping on stage was the fact that Alexis had helped me dam the flood a couple hours earlier. Good looking out girl!
Fucking Epic. Glided off the stage into numerous hugs and well wishes. It was just SO MUCH! Definitely riding the high curve of the Crazy Cancer Roller Coaster that day. The whole day was completely zen & uplifting.
That was Thursday night. I was still basking in all of Michael Franti’s Show glory on Friday. Even though I felt ok. Tired. Normal. A bit distracted. A headache. Also the new normal. If I had been drinking the night before I could brush it off as a wicked hangover. Alas, not even a sip of the nectar from the gods. Not that I’ve been missing drinking, doesn’t even sound appealing these days.
I couldn’t seem to actually do things that needed to be done. Call the Dr.s and a long list of things that needed to happen so I could get my shit together. Yet I just didn’t seem able to make any progress on anything at all.
I told my friend that I felt like I was going crazy. I’ve been grasping for words that I wouldn’t normally have any issues recalling. I no longer knew what day it was or on what day things occurred. It felt like my brain was scrambled. Sounds like Chemo Brain she says. Chemo Brain? I googled it and found that it sounded very much how I had been feeling for the last week or two — about when I started chemo. Well, at least I knew the reason for my insanity. Good ole cancer & chemo. Here’s a link to some info on Chemo Brain:
I spent the rest of the weekend visiting with family and friends. It was good to be home! I kept joking that Monday was the day “I get my shit together!”
I didn’t sleep well on Sunday night, woke up around 3 AM in a lot of pain, tried to go back to sleep, but just tossed and turned. I’ve been trying to lay off the painkillers. I took a lot of them after the surgery and they make me constipated and it’s looking like the chemo pills are also making me constipated…not much shit happening for me these days! Time to add dried prunes to the grocery list.
Got up Monday to take my chemo pill and went back to bed. Then I literally couldn’t get my ass out of bed after that. Felt completely worthless. Especially cuz I had some important shit to do. Bring my car to the shop for a new clutch — I left it at a friends house while I was gone and now the clutch is burnt out. No time for bullshit these days. I just want to get it fixed so I can get where I need to go.
I need to call my Alaskan Dr. mainly to get my chemo pills ordered. I had been warned that it can take 2-3 weeks to get them mailed to you. They are so expensive and hard to come by I can only get it from a few manufacturers down in the states. I also need to follow up on my surgery site. Is it infected? I have a list of questions for the Dr.’s in Houston that I need answered concerning that issue. Things that I would normally have no problem doing. But for some reason on Monday I couldn’t even get out of bed! My parents called. It was practically impossible for me to text people back. I broke down crying and told them that I wasn’t able to function at the most basic level. I felt like I was going crazy. Completely worthless.
This Crazy Cancer Roller Coaster is rapidly spiraling downward at an alarming rate!
Of course my amazing parents took the hour drive from the Valley to Anchorage and came to my rescue. They drove into town and literally helped me get my shit together. I ate a little bit of food and basically collapsed back into bed. I woke up the next day (oh yeah I also can’t keep days straight) feeling normal. My new normal is pretty much a constant level of extreme fatigue, pain, mainly on my left side, headaches, weird warped vision from time to time and a general feeling of mild confusion most of the time. I seem sensitive to loud noises –even my boo’s show. Bright lights or transitions from dark to well lit areas or vice-versa are also tricky with my vision.
I was able to make some phone calls to doctors. I took my temperature with a thermometer here at the house — one typically used for the kids when they get sick, but I didn’t feel like it was giving me an accurate read. I’d been feeling chilled off and on since Sunday night. Had a slight fever on that day, but after reading over some paperwork from the Dr. nothing under 100.8 is a huge concern. Seeing as it was reading 100.4 I decided not to be concerned. I had my parents get me a new thermometer the next day and it jumped up to 101.7 or something…time to get concerned. Called my Dr. and she was very concerned, wanted me to come in later that afternoon. Ummmm. Sorry, that doesn’t work for me — I had plans to go vinyl shopping! I had just been gifted a sweet ass Victrola Record player.
She wanted to see me first thing in the morning. My fever dropped back to normal a few hours after I talked to the nurse she told me to take Tylenol to reduce fever. I didn’t know Tylenol reduced fevers!!!! I’m used to taking an Advil/Aleve or two after a night of partying like a rockstar left me with a killer hangover. This was news to me!
Bright and early 9AM — as a self-proclaimed night owl, being somewhere at that hour is not ideal. That’s prime waking up in my robe time — for a solid hour or so. At. Least. Remember, I’ve never been mistaken for a morning person!
I arrive at my Dr.s appointment. My fever has stayed normal since taking the Tylenol yesterday, but my white blood cells are elevated. Could be a sign of infection. She takes a look at my surgery site and says it doesn’t look infected. That’s good! She calls in some antibiotics and tells me to get a chest X-ray so we could see what’s was going on.
I was pretty lucky to see the Dr. right away, because when I called in a couple days earlier, I was told the soonest I could see her was March 21. That’s 2 full weeks! If you ever need to see the Dr. right away, either tell them you have a fever, do the ‘ole Ferris Bueller trick and hold the thermometer up to the light to make it hot — I guess that one probably won’t work on a Dr…or actually give yourself a higher than normal temp. I just googled it. It’s a thing apparently. Of course, they’ll most likely take a crap load of blood and screen you for various diseases.
I hadn’t seen or talked to my Alaskan Dr. since I got home last Thursday…silly me thought I could be cancer free for a day or two, no such luck. I needed to bring her up to date on everything Dr. B said in Texas — of course my medical records hadn’t been sent to Alaska, even though we talked about this on numerous occasions when I was in Texas! Most importantly, I needed my next batch of chemo pills ordered and in my hands before they run out in a couple weeks. I couldn’t chance running out of the magical chemo pills. I’m like a heroin junkie, feigning for the very thing that is making them feel good — in my case hopefully a little healthier anyway, while simultaneously completely fucking up their life. But still. I gotta have it!
So for now, I’m on antibiotics and chemo pills, with a follow-up appointment in a week @ 8:15 AM!!! If the cancer doesn’t kill me, these early-ass appointments might! One day (maybe I’ll wait for summer) I’ll wander into an early Dr’s appointment wearing my Sexy Silk Robe from Thailand. Putting that one on my to-do list!
I’ve also decided that I need an actual cancer card. Yep! Going to see if a graphic designer friend of mine can help me out with that. It’s gonna be fucking AWESOME!
Thank you to everyone who has commented on this blog, my facebook page, the gofundme page or given me a hug when we bump into each other. It helps pick me up and raises my spirits on the days the Crazy Cancer Roller Coaster starts dipping lower and lower.
If you see me out and about around town and want to know “How are you feeling?” The short answer is, I’m just riding this Crazy Cancer Roller Coaster the best I can.