Karma, Karma, Karma, Karma, Karma, Ch...Chemotherapy

It's amazing, I have been home only 13 full days and it feels like we never left. The piles of laundry, work details and responsibilities have eclipsed the lazy happiness of vacation. I always wonder how I can hold on to the sense of vacation and travel bliss while at home, but I have not figured out the secret. To top it off, I have started chemo treatments to battle the severely developing autoimmune disease rheumatoid arthritis I have. Yay!

For those of you behind in the story, a quick review... last spring I started to have aches and pains, I naturally thought it was 2020 and ignored it. By mid summer I was getting these strange "attacks" where I would have severe pain in my hands, fingers or wrists, but it would subside and I would say out loud "whoa, that was weird" and that was that. One of these attacks was witnessed by my teenage daughter who watched me in bewilderment as the pain caused my arm to seize and my body crumpled oddly in pain. By early fall I had pain in most of my joints, most of the time, then horror of horrors came the day I couldn't open a bottle of wine. Shit just got real! Now, now I will see my doctor. Very quickly I hit all the markers to be referred to a rheumatologist who confirmed the severity and quick progression and wanted to start aggressive treatment right then, however my daughter needed support in a giant way and a new scenery was the answer so Mexico trumped everything. Fast forward to now and Sunday was day one of treatment.

It's a low dose chemo taken by pill once a week. Each week it will increase slightly and then plateau at a dose that I will keep at for the following month. Tests will be done and we will see if we need to increase the dose, add in another drug or go to injectables. I feel my doctor is very thorough and really good at her specialty... and just a tiny bit scary. I completely see why some people have not clicked with her, but after sharing a moment together in her office where we both cried and she spoke as mother to mother about my urgency to go to Mexico... well, now I am bound to her forever. 

"What is chemo like?" is the big question on everyone's mind, am I right? Of course it is! And while this isn't the heavy dose that cancer patients receive, there are some basics that are the same... nausea, stomach upset, fatigue and possible, but not probable hair loss. I will be taking folic acid to keep the hair from falling out and they say on the low doses used for this autoimmune issue, it is relatively rare. I was fairly optimistic that I wouldn't have any symptoms because I tolerated the other drugs, a pain killer and the hydroxychloroquine (yes, Trump's drug), over the last few months well. But I was not that lucky. 

I don't eat breakfast generally, so eating anything in the morning feels like a lot. I had buttered toast (gluten free because that is supposed to help with RA and I already feel sensitive to it) and tea and took the dose. About an hour later I was at a 5/6 if 0 is 'I feel great!' and 10 is 'I'm gonna die on the bathroom floor'. Now, I have battled being at 10 with my previous brain tumor issue and it is truly terrifying so being at a 5+ is completely tolerable. Not pleasant, but I can take it. Then I stood up. Holy hell, the wave hit me and I reached for the first thing I could... mint chip ice cream, because mint can help with nausea and because ice cream solves all problems. OK and because I can't drink while on these meds, y'all know I really think wine solves all problems. The day progressed like that, fine, not fine, fine, not fine until I tried some of my good ol' friend THC. I had my card through the brain thing and it was seriously the only thing that helped, luckily I still had something left around. Also, the GF diet may be harder than I thought on treatment days as the only thing like a saltine cracker IS a saltine cracker. 

So day 2, low dose, I should be fine! What can I say, I'm stubborn. I awoke groggy, started to do my usual email checks and decided I felt pretty good! I jumped in the shower, started some laundry (we barely leave the house, where does all this dirty laundry come from?!?) and started picking up around the house. Then BAM! I am suddenly woozy and dog tired, I could hardly get to my bed. Well, except I am a mom so that means I also checked in on my daughter and got myself some yogurt and fruit, but then I laid down. Over the course of the day, my appetite was dulled and I could actually fall accidentally while someone was talking to me. I know everyone is smirking thinking 'woman it was too much TCH!' but I promise I hadn't had any since the afternoon prior. This was deep exhaustion on an inner cellular level. It felt like every tiny cell in my body was expunging something, even my earwax wanted to leave, frankly it is beyond description other than... WEIRD. By evening I ate a small dinner and passed out on the sofa. Good times for my husband who is not drinking either in order to be my support team; only now he has to be stone cold sober and alone watching a movie I picked out. Not sure he is built for round 500 of watching "Pretty Woman" without a drink and pinned under my legs.

Day 3 has been interesting. I am not nauseous at all (woohoo!) and I am tired, but not ridiculously so like yesterday, but a new fun side effect is this strange fuzzy mental fog. I find it hard to concentrate and I am a little dizzy. I almost feel like I took a micro dose of mushrooms (not that I know what that would be like mom and dad!). I have worked hard to focus on work projects all day and feel the strain is catching up with me. I get as far as I can on my To Do List and then have to leave it again for another day. 

All in all I know that this is going to be OK, I'm going to be able to handle it and I will kick this autoimmune disease in the ass. I also feel dangerously close to crying every moment of every day. I don't want to do this. I don't want to be broken all the time. I paid my dues and don't deserve this. I want out. I want out, that is a dangerous one that I have to tackle throughout the day. Like giving birth, the only way through it is through it. When I first have the thought, before my rational mind kicks in and combats the negative thinking, I start to feel claustrophobic. Its like being in a dark tunnel deep underground, wedged in by too many people and much too far left to go forward. My incredible frustration that I'm sick, that something is wrong with me again, teeters on the verge of pushing my mind past the brink, and then I take a deep breath and surrender. There is no way out other than relaxing into it... and maybe crying when no one is looking. 

Going without wine is also sad, so I need everyone to stop what they are doing and pour a glass, because...say it with me... before anything else "Wine First!"