Happy tumor finding day 🤞

[SweetWithSour]

I'm keeping positive thoughts that today's scan will be able to locate my tumor(s) today!!!! In the last few weeks, I've been diagnosed with tumor-induced osteomalacia (TIO) aka the bone breaking tumor.

This/these tumor(s) release a hormone fgf23. In a simplified explanation, this causes my phosphorus to be low in my blood and leaves the bones very soft and weak. Bones fracture, muscles wasting, and the fatigue can be debilitating. My podcast goes into more detail if interested.

The hope for today is, this tumor can be located and easily removed . Once the tumor is removed, I will be cured of the excess fgf23. In a few years, my bones will hopefully build back up.

So I go into today hopeful. I don't go in with panic, anxiety, or fear. What will be, will be. I have trust and faith my doctors will be able to work with me for the best outcome!

 

[youngatheart]

@SweetWithSour prayers and hope for the best for you

 

[SweetWithSour]

No tumor found More scans scheduled Monday

 

[SweetWithSour]

Need a miracle tomorrow! I need one of the 3 scans tomorrow to show my tumor. Find, remove with clean wide margins. If this happens, my TIO cured. If not, that's OK because we all know I like the hard road. Can't wait to see if I find relief and energy.

Pause come into the present. The outcomes will be the outcome as they are predetermined. I will move and dance with this illness. I need to start to make the best that I can. Excepting and making friends with tumor-inducedis osteomalacia (TIO). Push myself for improvement and most importantly, advocate on my behalf. Don't mask, show the full painful picture.

 

[Auriel]

How the heck did I miss this? I'm sending lots and lots of hugs and hoping you get the bestest outcome , we'll all hope for the best outcome for you

 

[SweetWithSour]

You are so sweet!!! Nope, they haven't found my tumor yet. I even had a Dermatogy appointment today. Can you believe I'm getting a biopsy on my right upper outside butt cheek because the Dr thought it had a unusual contor ripple. He doc, It's called fat I can't even make this stuff up!

 

[JayCS]

He doc, It's called fat I can't even make this stuff up!

Hehe, yeah, sounds hilarious the way you put it, but I'm sure a doc will know that (maybe not want to say it ) and just want to be sure....

 

[SweetWithSour]

sounds hilarious the way you put it,

You have to have a sense of humor I think with all the random unexpected that come up. In none of anyone's guesses (yes I took bets from family and friends) was it even remotely guesses to be fat on my backside. Truly the comedy and entertainment that is my life lol.

 

[SweetWithSour]

Well.... they did not find the tumor yet. I had a head to toe PET Scan, CT of the Chest, CT Abdomen and CT pelvis. Today finished my last of the set of 3 for leg & foot MRIs. Thursday night was the fibula tibia (ankle to knee) bilateral. Friday night was the feet, both. And this morning the femor (hip to knee). No tumor found yet. Next up, 6 MRI scans for both arms, 1 at a time.

 

[SweetWithSour]

Oh and I've slept a lot! Saturday I may have been awake a total of 30 minutes. I'm exausted. I had scans Thurs, Fri and Sunday. My pride was put aside on Friday and today. I let my husband drop me off out front and go park the car. I sat and waited inside for him and my lovely chariot. I'm not able to walk much of any distance. I'm so slow, it has to he painful to watch. I also get winded and light headed. So now yes, I'll let my husband push me in a wheelchair. Not as humiliating of the time having to ask my husband to shower and shave me.

 

[JayCS]

Oh boy, and I'm shot from just one contrast CT on Thursday (also in case of cancer).

But it's the contrast (oral and injected) I'm reacting to mid-term, cos I was pretty OK on the day.

Puking today I think is still that, cos my body (the MCAS) often reacts late, like to the jabs, but my wife says she can't believe that and is masking for a bug. Covid negative though - and where would I get any bug from anyway? - except her. But no temperature, no diarrhea, blood pressure normal...
Aside from burning throat it's gonna be a problem not taking my supps. So I might give in to my wife's urge to take one suppository antihistamine, dimenhydrinate/Dramamine ('Vomex A'). Interesting if I react to it. But only excipient is hydrogenated fat, should be OK. Halved it (ain't easy) to be sure.

You had a scan on a Sunday? That's impossible here, even I think in an emergency.

Hope you'll get a result that's in part "satisfactory"...!

 

[SweetWithSour]

You had a scan on a Sunday? That's impossible here, even I think in an emergency.

The added nights and weekends to radiology operating hours. It is nice and very convenient as I need my husband to take me everywhere, ugh. The loss of independence is frustrating at times.

contrast CT on Thursday (also in case of cancer).

But it's the contrast (oral and injected) I'm reacting to mid-term, cos I was pretty OK on the day.

Try to drink fluids to flush it out of your system. The CT oral and injected contrast can be really hard on the kidneys. Drinking water will help dilute and make it a bit easier on them to flush it through.

in case of cancer

Sending you lots of love, positive vibes and healing energy! I hope you come through this without a cancer discovery.

Hope you'll get a result that's in part "satisfactory"...!

Thank you! I was hoping they would have found the tumor and we could be done with the scans. Mine is a very tiny one (likely) that can be anywhere on the body, skin, muscle bone etc. It release a hormone fgf23. This fgf23 tells my kidneys to flush out phosphorus. My phosphorus in my blood is low, so the alarm is sounded and my body goes into action to absorb phosphorus from my body (muscles, bone, teeth). For me finding the tumor would be a good thing. Unfortunately, it is playing hide and seek. It most of the times is a benign tumor. Some people they never find it. If the can find and remove mine, I should no longer have Hypophosphatemia (low phosphorus).