When the surf cascades over your head, and pushes out the breath from your lungs…

Its been a while since my last post, because blunty everytime I try and think or draft in my mind a conversation that I don’t mind posting, it just seems so negative….

I’m not a negative person. Anyone with any interactions with me, would be inclined to say that I call things like they are, then immediately look for the upside, the win or the ray of sunshine, even in seemingly abysmal things.

That’s just me, always has been always will. If I can’t write that way, I just aint gonna write, because blunty if it isn’t me, then its not worth doing.

There was an old game on the price is right with the little yodel man where he would climb up the mountain. I feel like that little yodel man lately. Singing and trying to find the best possible spirit, and so many things keep trying to put me down.

I had Scans in July, Brain MRI, Full body CT, and Bone scan. This was the third time I’d had this trifecta of tests this year, and there is another scheduled – per my request early next month. See doctors in their diligence wanted to do them this month, but that would mean they would also want to do them in December. And 5 of these sets of tests in one year seems more than a little excessive, so I opted to schedule these later than they requested.

The MRI from July, actually looked promising. It showed the radiation is helping. The CT wasn’t horrible, but the bone scan showed disease progression in my sternum, which had previously shown no disease progression. I opted to not start the treatment options immediately for this, as I was progressing with Radiation, and I don’t really want to double dip. My body is not as strong as it was 4 years ago, and toxic treatments are just that, toxic. Have to temper them with life.

So instead I put it on hold, and did the radiation. I had a reaction with the radiation. It sent me to the hospital. it wasn’t a seizure, which is both good and horrible bad. Good because, “yeah not a seizure”. Bad because “they” medical doctors don’t really know precisely what “it” was. The neurologist at the hospital, wonderful person, reviewed the EEG, during which I was visibly spasming, leg moving around on its on, and the eeg showed No seizure activity. So they called it a “negative neural response”.

Something about this experience in the hospital basically did one of those things in my mind, where I basicaly said “Fuck it” – I have done this a few times in my life, mostly situations that in hindsight I can see were a quake of unpleasantness for alot of people in my life. But my mind decided, and I took a 4 week vacation to visit a friend in Spokane Valley.

It was an amazing trip, I did alot of learning during this time, and health things were basically in limbo. This meaning, I had no incidents, and while over 4 weeks I did have 4 bad days – 2 very bad, 2 mildly bad days – overall I had alot of fun and was able to spend a good deal of time just feeling like myself.

I flew home on a Tuesday, to a myriad of engagements the very next day. I crashed early, and got up on Wed, I had another of these muscle spasm incidents, far more severe than the one the day of radiation, it amplified much faster, and by the time I got to the hospital I was in the most pain I have ever experienced in my 46 years of life, the spasm had radiated up to my port, and shot down my arm feeling as if someone had shoved my arm into a furnace. I was screaming in agony when we went to the hospital. I had taken Ativan prior to going to the hospital, they dosed me with a triple dose, I basically fell asleep and the spasm stopped.

I think what makes these spasms the most frightening is not really understanding why they are occuring, in other words, What am I doing or not doing that is causing these?

Being a data analyst I looked at the facts. What was I doing daily, that could have contributed to or to lack of these things. I came across a curious thing. I was taking an herbal detox supplement from my acupuncturist that ran out while I was in Spokane. That Wed back was actually day 10 with no supplement.

Now I’m not a poster child for OMG MUST DO HERBAL. However, that being said, I know from personal experience some herbal things are some of the most powerful tools we have for health. My fatty liver condition from the 20s was reversed 100% by Milk Thistle. Colds and sore throats have been avoided and resolved by Oil of Oregano. Muscle soreness from work outs or stupid human things, have been resolved with Arnica Montana. But I was skeptical about this supplement being the source of “lack of spasm things”

Until I started taking it again, and suddenly the spasms went from being 3-4 a day, to being 1-2 and less strength, to being none.

Going full circle on why this is a non sales pitch – well, I resolved, that since I was home now, it was time to resume my treatments towards backing my cancer off, specifically re-starting the chemo drug TDM1 – that basically helps my body kill off cancer, whilst crippling its ability to spread, and proliferate. So talked to Oncologist, and she was like “hell yes I’ll start you back again, good choice, good patient” – okay maybe not quite that way, but close lol. I love my oncologist, she is great. Before we restarted I went to pharmacist, and of course, there is a contraindication of one of the herbs in this supplement. …. Life couldn’t just be straightforward and easy for once could it?

The odd thing about the contraindication is that it appears to be in how the TDMI is metabolized in the body, and while these herbs support detox, this particular herb actually somehow suppresses the bodies natural ability to remove this drug efficiently. Its coupled with a head scratching thing, because the drug pharmacist also gave me this really informative sheet of contraindications that had licorince twice, which is not in this supplement. Which just makes me scratch my head. I never understood why people would do illegal drugs. But I do now, because when you know something works for you, its very hard to listen to the naysayers telling you its bad.

Had first treatment of TDM1 yesterday, and had a HORRIBLE reaction. Mostly because I didn’t let them give me the IV steroid at the time of drug infusion, as I had a steroid infusion scheduled for today, and I didn’t want to overlap that many in a week. WONT MAKE THAT MISTAKE AGAIN. I will say, TDM1 gives these lucide fantasy dreams that are like manifestations of the mind. And I spent the entire 18 hours I tried to sleep fighting imaginary space monkeys that were invading my mind with bubblegum guns of spoof that kept making inflammation. DOWN WITH MONKEYS.

Sufficed to say, this whole post doesn’t have much to say other than, yeah I’m still fighting. Some days harder than others, but I’m still finding and having fun even when the days are hard. I think some of the most “lack of inspiration” I have encountered, is during a few of the bad days, there is nothing more demoralizing than finding these super empowering videos or blogs of people that were — catch that word there – “were” fighting cancer at some point x amount of time in the past. They had vision, they had a voice, they had strength and power, and now they are dead. Yeah I mean I guess everyone dies, and I guess I’m more accurately aware of my morality. I guess the overriding message on this is Carpe Diem. Tomorrow isn’t promised, enjoy today.

Love you if you stuck it out. I’m doing okay, feisty and fighty as much as always. I’ll try and post again soon.

3 thoughts on “When the surf cascades over your head, and pushes out the breath from your lungs…”

  1. So proud of you,that you Are still fiesty and fighting ANd that you are being proactive and knowing your body and its responses. God bless you abundantly. Prayers are going up right now for your continued recovery and no complications any more.

  2. Thank you for sharing all the inspirations, good and bad times. We only learn from experience and with the education on procedures, drugs, scans, herbal meds, and what someone has experienced. We will never know!

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