Recovery is one hell of a road.
One I’d be fine having left untraveled, but that’s not really an option…
I’ve said before, in an earlier post, how long it’d been since I’d last written. Well, that has nothing on this post. It’s been around five months or so since I’ve updated, but believe me, we’ve all kept busy since the last I’ve shared. Now, since I had a quick trip to the ER this past weekend, I thought it might be a good time to get all caught up.
I’d really love to sit here and type out pretty descriptions of rainbows and unicorns filled with hope and laughter, telling everyone how strong I’ve been through it all. But the truth is, this cancer experience has come close to breaking me. A few times. I don’t know how all of those cancer survivors do this. There are so many who are so much younger, so innocent, so tiny… and then others who are so much older, so weak, so small… and they battle through this chemo crap like caped heroes in the latest Avengers movie.
I am not that caped hero.
The past five months have been a struggle to find my way out of bed, address the abdominal pains head on, kneel to the incessant nausea, quite literally, and try to take on the world like it was a normal day. Because it was a normal day. Every day is a normal day. The rest of the world is still normal, still turning, still shuffling on like every other day. It’s me that has changed. And, as I kept realizing but never really accepting, this might be as good as it gets for me. This might be as good as I’ll ever feel.
Now, before I get you too depressed, there have been good days and good times. My dear friends took me on a cruise to the Caribbean; A memory I’ll treasure forever.
I was able to go with Emma to another Globals Destination Imagination Tournament, just before I participated in another successful Minnesota Remembers Memorial Day Event with Flags for Fort Snelling.
As summer came, so did camping! I took a week with my dear friends up near Bemidji, tent camping at the deepest lake in Minnesota.
Then, my lifelong friend Nichole and I had a long, glorious Girls Weekend tent camping at The Point, a peninsula at my family lake up in Richmond, MN.
Meanwhile, Emma took two weeks to visit Arizona and go on a road trip through Utah with my parents. After which, she had another long weekend at a friend’s cabin, filled with tubing, and all things teen-girl. We had a garage sale and been working on finishing our basement.
Still, with all of that, the days in between, are no joke. This treatment that I am on, Lynparza, is a daily chemo pill. I take 600mg a day; 2 pills in the morning, 2 pills at night. And boy, are they brutal. The obvious side effect, the nausea, is like no other nausea. Nothing touches it, it’s crazy. It can linger through any special diet, through any specific pattern that I take my nausea meds. Then, the bone pain. The crushing, radiating, can’t-focus-on-a-damn-thing bone pain. It’s a lot of fun. Any “ailment”, such as an old shoulder or knee injury, is now an active flaring point of hell. I wish I were dramatizing the description for you.
Eventually, it became too much. I couldn’t do it any longer. Without telling my doctors, I took a break from the medicine. I thought my symptoms would just fade over a few days and I’d slowly get a break from feeling so bad. Sadly, it didn’t work that way for me.
The withdrawal was ridiculously unfun. The cold sweats, the shivers, the nausea, the need to crawl out of my skin before I peeled it off with my fingernails. Why? Why do I have to go through this? I paced through my house hoping to find comfort in my bed, no the couch, no the spare bed, no my bed, or how about the floor…yeah the floor. Nope, how about the bed. Back and forth, back and forth, all day. Under the blanket, throw the blanket on the floor, pick it up and wrap up in it before violently kicking it across the room. Cry. Scream. Wail. The dogs outside join in. It’s nighttime now, and there’s no relief in sight.
It wasn’t until the third day when my mom came to check on me and helped me find relief. Cold wash cloths, fresh air and a few more medicines chilled the cold fever out and settled the nerves enough for me to get a few hours of sleep. It was nice to see a light at the end of the tunnel. This wasn’t much of a break yet, but I was excited to soon feel better! Except…Except now I found a lump.
So in the four damn days I tried to take a break from the debilitating “medicine”, a new freaking lump appears in the SAME area as the last lump sprouted. Groovy. So, back on the meds I went. Only this time, per doctors orders, I went on them at half speed. One every morning, one every night. Okay! I can do that!
New day one, looking great! Had a wonderful day shopping with my daughter that I will never forget. We bought her the most adorable dress for a quincenera she’s attending, complete with shoes, new earrings, and even new ear piercings.
New day two, a Monday at work, and it was so nice to be at the office feeling so much more like myself. Day three, day four, day five things are going well, I’m only feeling a little icky. Day six however, it’s starting to get worse. I’m going home early.
Then day seven.
Day seven after starting the pills again. It started around 4am and it didn’t stop the entire day. I was non-stop vomiting, and, well, other situations, all morning and afternoon. It took all I had to text a few people asking for a ride to the emergency room. It was my mom who finally answered my calls, and when she got to my house, she couldn’t get me off the floor. I was lying on my bedroom floor vomiting into a bath towel, crying that I couldn’t do it anymore.
She called the ambulance, but two firefighters arrived first. One tried to give me a vomit bag, but it stunk too much like him and his aftershave. They let me take my time trying to get outside, down the driveway, into the bus where the meds were. Something in there had to help me. I sat on the steps of the bus for a while, letting them check my vitals before I made the final jump into the stretcher. It was there that I found my first bit of relief in a max dose of fentanyl. That crap scares the begeebuz out of me, but it was what they recommended. Then they shot me full of some anti-nausea, and neither did too much. It wasn’t until the second dose of each that my body finally started to calm down.
Horrid waves of pain kept streaming through my abdomen in timed shifts. I screamed with every one. My good friend, Jen, met at the hospital to stay with me while my mom went home to get my things. I’ve never wanted to have anyone in my life see me like this, so broken, so busted. I could see in their eyes how helpless they felt. After what felt like an eternity, enough meds finally calmed my system and I found some relief. …all this commotion just from taking the same medicine I’d already been on for months before? It seemed a little excessive.
But maybe not.
That excessive episode was enough to prove to the doctors that I gave this treatment option my 200% effort. And even though this treatment pill is supposed to be the preferred option designed to tackle my specific gene mutation, it clearly is not the right treatment for me. They kept me at the hospital for another couple of days for testing and to be sure all was well and good, which was fine by me because I didn’t mind the break. The nursing team at Mercy is A+ grade by far, making situations like that about as good as they can be. I’ve hugged my fair share of the nursing team by now- I appreciate them like crazy. Plus, the hospital food wasn’t too bad of grub.
What’s the plan now? Now, I go back to chemo every three weeks. This time, the chemo will be at maintenance level, so it’s only one medicine instead of three. This means I can keep my hair, and shouldn’t get too sick. If I do, it’ll be for a few days or week after the chemo, then feeling good until the next one. I’ll take that over these pills any day. (At least I think. I really hope this isn’t a “grass is greener” situation, but the pills were pretty f*cking bad.)
So, if I have missed your call, your birthday, your event, or your message…I am so sorry. It has been a LOT of ups and downs over the past five months. I tried to take advantage of any second I was feeling okay, but there were many more seconds that I had just simply been sick as a dog and hating life at home. My team has been doing an amazing job utilizing me on my time, using me as a consultant and keeping me involved with everything as business goes on as usual, and I couldn’t be more thankful. I haven’t seen my nephew as much as I’d like lately, but hope to make up for lost time, soon. I still have more outdoor living to do before the end of the season somehow, too….think that can happen?
To those of you who have been following my story and contributed to my cause, I cannot thank you enough. This road to recovery is longer than I thought, and I’ve learned I’m nowhere near as strong as I thought I was. But I’m still here. I’m still fighting. I can’t say I’m in the clear yet, because my doctor won’t let me. To be totally honest with everyone, last year, my doctor’s prognosis was 1-2 years of life left. When I hit remission, I asked her if it changed her prognosis. She said “No.” She told me she won’t change it until I at LEAST make it six months without recurrence. …that date is November 29th.
As long as this new lump (currently being biopsied) comes back as nothing, then I’m still creeping my way to that 6-month milestone. After that, the next milestone is 5 years. There will be a lot of chemo and blood tests between that time. It’s not time to throw a celebration yet, but we’re getting there! And I’ll update the significant parts for everyone along the way.
Thank you again for your kindness, love, support and generosity. I couldn’t have made it this far without you, and will need your positive vibes to get me through the next two milestones. Together, we’ll kill off these cancer cooties! *MUAH!*