With a title like that, I bet I know what you’re thinking. I am a citizen of the Cocktail Nation, and it’s no secret that like to get my drink on, so you’ve surmised that I get “polluted” on Saturday nights?
Nope.
This ain’t even about booze. It’s about pharmaceuticals.
It early October I switched to the drug Stelara to control the symptoms of Crohn’s disease. There are currently no other drugs on the market left for me to try. Unlike Entyvio, which required me to return to Seattle every two months for an infusion (my health insurance under the ACA covers care and treatment only in the state of Washington), I will self-inject Stelara. That is certainly more compatible with a nomad lifestyle, and much less expensive than parking the rig, arranging pet care, and flying back all the time.
But what if Stelara is not effective for me? If I want to return to Entyvio, which afforded me imperfect improvement, I must tamp down the ole immune system and keep antibodies from building up, creating a resistance to Entyvio.
This is where the poison comes in. Methotrexate, to be exact. Once a week, I take chemotherapy.
This isn’t the first time I’ve taken Methotrexate. In 2015 I gave myself shots of the stuff to the abdomen once a week. I lobbied hard to go off the drug after half a year due to nausea and hair loss, and my doctor capitulated.
This time, the chemo comes in the form of six little pills taken all at once.
Lucky me – I got to choose the day of the week to start chemo. In this RV lifestyle, I rarely change campgrounds on Sundays, because everybody and their brothers are doing it; I prefer to move on Mondays. It made perfect sense, therefore, to take the chemo on Saturday night, hopefully sleep through some of the symptoms, and rest up on Sunday.
The first week, I felt no symptoms at all. The second week, on Sunday I felt like I had been run over by a semi, but I also hiked over three miles the day before (yes, moi, hiking – more on that another time) and attributed my aches and pains to that.
Saturday night, I took my third round of chemo. I woke up yesterday feeling like I’d been run over by that same semi, but this time it backed up and rolled over me again. My limbs felt so heavy I could barely raise them. I thought I could sleep for a thousand years.
Of course, yesterday was unlike most Sundays. I was in Page, Arizona, and I wanted to fit in the North Rim of the Grand Canyon; its campground closes for the season on October 31, and mixed rain and snow is forecast for later this week.
I dragged myself out of bed, broke camp, drove the 2.5 hours on narrow, winding roads to the North Rim, and set up camp.
With only two days at the Canyon, and noting that yesterday’s weather was better for viewing than Monday, I immediately drove to the North Rim Lodge to walk the Bright Angel Point Trail – paved, and a little over half a mile round-trip, which should take about a half hour.
It took me over two hours.
Not only was I bone-achingly tired, but dizziness set in, a side effect of methotrexate – just perfect for walking a narrow trail along a 6,000 foot drop. I could walk only a few feet, then needed to sit and rest. A younger couple asked me if I was okay, and I explained a medication was making the walk challenging. I think they were sorry they asked.
I know I’m sick, but do I have to feel this fucking sick? Is it better to be disgustingly ill every seven days, or over-extend myself financially to get the necessary treatment in Seattle?
I’m not liking either of these choices. What’s behind door number three, Monty?
(By the way, the Canyon was beautiful yesterday. It’s my first time at the North Rim. Trying to remember to practice my thankfulness.)
This Post Has 18 Comments
You are without a doubt the strongest willed person I know of. Glad you saw the lodge and rim. Maybe your system will not have such a bad reaction to the treatments over time. Love you!
Thank you, Jane. And thank you for being such a constant reader and commenter. It means a lot to me.
Sounds like you are between a rock and a hard place. It must be very taxing to feel so debilitated after your Saturday night poisoning.
Is there any possibility to get choices of meds from Mexico or Canada? What is the story in the EU? Is there any way you can do legal consultations online to help fund the bank?
You are a witty, skilled writer (Dorothy Parker comes to mind). I know you must be an inspiring role model for those with your medical DX. Not only are you a nomad but a nomad with a Class A.
Will you be at the Women’s RTR in January? If so, I would love to connect with you.
Keep writing and sharing.
Catherine
Catherine, wow, you made my year with that Dorothy Parker comparison. I also like your avant-garde questions and way of thinking. I must admit I didn’t know anything about the Women’s RTR until you mentioned it. It sounds like a wonderful group of women. However, I’ll be in Palm Springs then. Perhaps you could swing by for a visit afterwards!
I see a very brave, strong, and determined woman who squeezes every ounce of fun out of any opportunity afforded her. Yay for you!
Hey, Shellie! Good to hear from you, and thanks for reading. I really appreciate your encouraging words.
I’m so sorry you are having to deal with this treatment that makes you so sick. I can’t imagine the strength it takes for you to live your lifestyle with this having such an effect. You never cease to amaze me with your candid accounts and your quest to carry on in spite of it all. If you need an insurance change, consider moving your residency to Florida, get on an ACA plan with Florida Blue. It is very similar to WA coverage except it travels with you across the country. We did it in 2017. Ping me if you have any questions.
Thank you, honey! For myriad reasons, most of which are too boring to post here, I’m going to keep my Washington residency … for now. But if I ever change my mind about that, you’ll be the first person I ping!
I am so impressed that you pushed yourself to hike that trail when you were feeling so bad! That’s some strong will and determination! I hope you feel better Tammy 😘
Thanks, Pam. I’m sure I’ll feel better just in time for the next dose. Hardy effin’ har.🤦♀️
I hate, hate, hate Methotrexate! I too had to poison myself once a week until just couldn’t do it anymore. I’m also a full-time RVer with an auto immune disease. I am really feeling for you, I am having sympathy nausea,lol. I can smell the damn stuff. I truly hope your system adjusts to it and you can turn to a more pleasant Saturday night poison.
Happier trails and safe travels!
Thanks for commenting and commiserating, Beth. I told my doc that Methotrexate is the real Yellow Menace!
We pull an Airstream and have for the last 11 years. Best purchase we have made but also one that was made so that I could travel with a clean bathroom. I’ve been dealing with Crohn’s for 25 years and as time has passed the disease has become more active and always Unpredictable. Hiking was out of the question until last week at the Red River Gorge in Kentucky. After 6 months of Entyvio and believing it wasn’t working and being on the specific carbohydrate diet for four weeks, I was able to do a challenging 1 1/2 mile trail down from the Natural Bridge! At 69 years old and for years not being able to venture out, this was INCREDIBLE! I give so much credit to the specific carbohydrate diet. Look into this diet. It seems to be working for me. (Surgery is in the near future due to strictures)
You are a courageous, and determined tramp! Keep fighting
Jackie
Go get ‘em, Jackie! I’m so happy for you! My doc and nutritionist have recommended FODMAP. I’ll report back!
I just want to fly out to where you are just to give you a big hug.
Awww, Scott, thank you. That is the sweetest thing. It made me tear up!
Damn Tammy, you are such a brave warrior! I saw your amazing pics from the North Rim with no clue what you were going through; you have massive cojones chica!
I am so glad you went ahead with your plans, because it is such a special and spiritual place.
You are inspiring to so many. Hugs, Lynne
Tammy, I did not know you were still dealing with this dis-ease… I love that you continue to live, though, explore , travel, and follow your dreams… amazing! hope to see you on the road this next year, my rally again perhaps in june? we’ll be in palm springs in February if you are still there! love to you… and healing blessings… love to continue to read about your journeys…
xoxo