No 'Roid Rage, Just 'Roid Ranting.
"My how I love Decadron & the things it does to my body" said NO ONE EVER.
This has been an interesting weekend of discovering yet another reason to highly dislike taking a steroid every day. As a 28 year old, I have luckily never experienced arthritic-like joint pain. Oh, my friends, how that has changed. I don't know if I should feel honored to be another statistic to support the potential side effects, or if I should just shut my mouth, take some pain meds, and suck it up while I remain on the medication. The rewards have got to outweigh the costs, right? Would I rather have a migraine so bad again that it takes me to the ER and requires morphine to disappear? Hell to the No. And that is what happened when I first tried to wean off the steroids (following doctor orders, don't fret). Now round 2, let's see how painful Tiffany's knees, ankles, wrists an elbows will become. Oh and let's see how much of a puffy moon face she will become before she is merely unrecognizable. I think the joke's on you for that one you silly medicine. I just got (unknown) number of inches chopped off my hair and I think the short hair fits my moon face better than my long hair. Let's face it, a moon face is never sexy but I think it might look a teeny bit better with this new cut. So there, suck it & take a look for yourself: Before - obviously full moon, no I did not just get my wisdom teeth removed nor do I have leftover breakfast stored in my cheeks:
After - nice little optical illusion. Still full moon but not as noticeable, right? Oh also, I can hide my scar VERY well with this new 'do:
As for the pain, I'm really trying to stay positive and do think I'm doing a fairly decent job especially compared to the person I was a month ago, but sometimes I just need to complain about something that hurts and that in my mind is not necessarily consider 'trivial.' I thought my knees and ankles were sore Saturday morning because we had gone to a concert Friday night where I stood for longer than normal so I stretched with a tension band, took some pain medicine, and faced the Saturday. Pain went away, life was good. Let's fast forward to Sunday morning, same story different day, except Saturday my amount of standing was exponentially less than Friday so now I start to wonder if my BFF Dron (Dron for Decadron) is feeling a little neglected and wants the spotlight to be on her yet again. I mean come on, Dron was the star in the ER just a week before, she must not be able to go 7 days without attention - typical high maintenance brat. I start googling if joint pain (different than joint swelling which I was already aware of first hand) was a side effect of the med. Low and behold, what I found supported my thoughts and feelings. So then I did one of my new favorite things, I turned to the tumor specific Facebook forums/communities that I am in to seek advice.
[Sidenote: these FB pages are amazing. The people in these groups are beautiful souls. No one is there for pity parties, we are all there for real, honest information and to share raw experiences in an effort to spread awareness to both patients, caregivers, friends, family, etc. I have met amazing people already and have learned SO much that I wouldn't have been able to find by googling.]
I posted in the 3 different groups I am in asking if anyone has experienced this pain and turns out Dron has many friends! I heard things like "it's normal, it gets better with time" & "my husband had swelling in his ankle. It wasn't red or warm so a few of his healthcare providers were not too concerned. One doctor however ordered an ultrasound. Several blood clots were found in the effected leg" & "They are the very places I get inflammation pains. Next comes wrist, then knuckles. It's worth asking doc if it's detox of Meds or inflammation caused by what. Ask if exercise (swimming best for inflammation/ joints) or walking, drinking LOTS of water and curcumin will help. I find diet effects my inflammation points SO much. So do meds." Although 'comforting' might not sound like the appropriate adjective to use in this context, for me, this information is extremely comforting. The best feeling is recognizing that yet again, I am not alone. These people, some who I have met & some who live in a different continent, are part of this massive online family and are only a few keyboard strokes & clicks away at any time of day. I received a lot of information from a local woman about herbal supplements known as Tumeric, Boswellia, and Omega-3 fish oil capsules. I am no physician, nor am I 'hip' on all the herbal goodness, but from talking to the woman on FB and conducting a little bit of research on my own, all three of these appear to have positive effects on many areas in the body with the common trend of anti-inflammatory and joint pain treatment. BAZINGA! Maybe this will be what Dron needs, maybe she's feeling neglected because these supplements are actually her friends and not just the 'frenemy' kind that will make her happy for a short time, then piss her off by stabbing her in the back at which point she comes back with a vengeance and makes my life hell. We're going to assume real, true friends here. I started the Tumeric & Boswellia today, still coupled with my oxycodone/tylenol cocktail if needed, but hopefully the pain will start to wear off and I won't need the pain medicine as often or at all. Don't get me wrong, it's not the worst thing to have to take, but if I want to have an adult conversation and not feel like I'm moving .008755 miles an hour, then I'd rather avoid that and only take it if I know there is no adulting going on and a good chance of a nearby bedtime.
So this is where I am now. First step, let's see how I feel in a few days. Good news is that I am able to taper the steroids from 4 mg/day to 2 mg/day on Tuesday which I expect should alleviate some of the side effects, but if not, I do have confidence in heading down a natural/holistic path coupled with prescribed medications. I know what some of you are thinking, shouldn't I discuss the drug interactions between the supplements & my meds with a licensed physician? The answer is YES. I may be doing this backwards, but I do have it on my chore list this week to call a doctor and talk about just this. Referred by the woman who told me about the supplements, there is a local doctor right over in West Bloomfield. Dr. Green, a Naturopathic Doctor (ND) is board certified in Naturopathic Oncology (FABNO). According to the practice website, she provides consultations for integrative cancer care, survivorship care, cancer prevention and mental wellness. Integrative cancer care is patient-centered , evidence-informed, and highly personalized. It focuses on empowering and educating patients about how to safely combine treatments so that they get the best of all possible worlds. Natural therapy options include nutritional supplements, diet and lifestyle changes, herbal medicine, homeopathy and mind body medicine. I am excited to continue to learn more about this approach and others that come my way. I am also excited to share more about my weekend with you, specifically the first support group that I attended on Saturday morning. Lots of notes were taken, but not yet reviewed & organized. Look forward to a post focused on that information within the next day or so, it is a lot but I feel so much more knowledgeable after listening to Dr. Walbert and want you to feel the same, whomever 'you' are. XOXO
P.S. Got a case of the Mondays? Just remember, today is officially the first day of Summer!