thrivingwithtori

[thrivingwithtori]

August 26th, 2019

I went to the primary today to do my month follow up. I advised my doctors assistant I didn’t know if she still wanted me to go to UCSF and also that I needed help with the appeal process for my disability. She said ok, took me in the back and assured me to tell my doctor but she would start everything for me. Man I love my doctors office and staff.

I go in to speak with my doctor advised her of the PET Scan showed nothing, explained my blood work to her and asked if she still wanted me to go to UCSF. She advised me due to the autoimmune disease and my blood work regardless of the findings on the PET Scan many things are still alarming. So I will have to go.

You see the way my autoimmune disease works is it camouflages my cancer cells to look and act like normal cells. So although my PET Scan showed nothing my blood work is saying otherwise. So off to the specialist to hope they can fix me. Also she wrote my letter which basically says I’m out indefinitely as of right now and until she states otherwise.

Living with the unknown sucks. I’ve said it before I’ve always had control of my life so now dealing with this it’s as if I have no control. I have to answers to how to fix me and or how to cope with it. It’s as if I am just me floating in water that never ends.

#livingwiththeunknow #livingwiththeunknown #mystory #paraneoplasticsyndrome #raw #real #thyroidcancer

[thrivingwithtori]

August 23rd, 2019

Today was yet another visit to the doctor to see what another test may or may not show. Inside I am reeling as I am expecting bad news. I mean my antibodies were normal but the thyroglobulin was high. 

Breath, maybe its not as bad. Doctors comes in and advises my PET scan shows nothing. I kind of just keep saying ok. I am unsure on what to say I am ex tactic it shows no cancer but I am deep down annoyed because we are kind of back to square one. 

I want answers, I am lost, I am hurting and most of all I feel broken. Living a life with the unknown and doctors unable to figure out whats wrong makes one think maybe I am really fucking crazy. Maybe this illness is all in my head. Instead I stop and think rationally. alright its just another dead end. you cant keep hitting dead ends eventually you will find the exit. 

So its time I raise my umbrella, own this storm and remember it cant rain forever the sun will come out eventually.  

#myhealthjourney #livingwiththeunknown #patience #positivity #faith

[thrivingwithtori]

PET Scan

August 21,2019

Today I went and got my PET Scan. this is going to be the determining factor on if I still have cancer, where its at, and how we should approach it. I wake up I get ready and I go. I think to myself the entire time “ why are you not scared?, Why are you not freaking out?”. All to sit back and realize its time to leave it in the hands of the higher power. 

This isn’t my first rodeo with cancer. At the age of 22 I had my first IUD removed and upon doing so my doctor found cancer cells. I had a procedure done did my follow ups and was cleared. I beat it why cant I beat it again? I can and I will. 

I am sure as whom ever reads this will think wow she doesn’t care she has cancer. No that’s not true. I do! I am someone who has always had control over myself and everything around me at least 95% of the time. Having no control over my health right now has sent me into the biggest depression I have faced in a long time. 

Unfortunately, facing trials and tribulations isn't something new to me so I am going into this with the idea of getting the worst news so that way when or if it isn't it’s a huge relief. Oncologist called soonest they can get me in is September unless they have a cancellation and or they need to go over results. 

Welp next day I get a call again and “ hey your results came in pretty fast and we have a last minute cancellation at the end of the day tomorrow can you get here”. well of course I am going so here it goes tomorrow its time to find out what is possibly going on. 

#livingwiththeunknown #cancer #mylife #livingwithillnesses

[thrivingwithtori]

August 15th, 2019

I went in to see my neurologist as I haven’t seen him in 4 months. Plus my endo never documented his findings of paraneoplastic syndrome. Soo here we go asking to have the test ran so it helps figure out the next steps with my cancer.

I go in and speak to my doctor and he explains the issue with paraneoplastic syndrome is that it hides itself and blends itself to be recognized as normal cells. He explained he’ll do his best but he’s not guaranteeing us being able to get blood work or anything else to basically show itself but we will try.

Living with something like this doesn’t surprise me my body has always been fickle. I have PCOS, however, doctors would of never known due to it not presenting itself on blood tests, same with my thyroid cancer not once did it show on my blood work but further scans showed it.

In the meantime even though I was against it my neurologist has prescribed me clonzapam as it helps a tad bit with the dizzy/black out spells. So let’s hope I can get the diagnosis from all Drs so I can start the next steps needed in this process.

#cancer #cancerfighter #thyroidcancer #autoimmunedisease #paraneoplasticsyndrome #raw #real #life #mylife #mystory #livingwithanautoimmunedisease #livingwithcancer #livingwiththeunknow

[thrivingwithtori]

Today’s the day I get to see the oncologist. August 13th, 2019! Since my thyroid has been removed I’ve continued to have issues. I’ve mention many of them in my previous posts. To name a couple different ones I have issues with swallowing my pills, talk as I lose my voice and extreme fatigue.

Anyways time to see the oncologist I’m so excited. I wake up my voice is shot, the right side of my throat is swollen and man I’m soo exhausted. I get to the Drs, get checked in, go to the back. Now I’m at a cancer clinic so it’s extremely cold and my body knows it’s cold but I’m pouring sweat. Why am I pouring sweat?

I do my Intake Dr walks in and we discuss my issues. He asks to to sit on the table and again I’m still sweating, I can barely talk and my throat is swollen. In the deep back of my mind I’m thankful for all of this to be present while I’m seeing the doctor but in the front of my mind I’m thinking “for fucks sake get it together body”. Lol.

Let’s rewind to before surgery I’m seeing my endocrinologist I explain to him “hey look I have swelling in my lymph nodes on the right side of my neck” in which he replies “oh it’s probably allergies they don’t look cancerous”. Now most of you don’t know but I come from a long family of people in the medical field a long with I went to school to be a medical assistant so me being me I’m like ok cool let this dude fuck in and see what happens.

FYI don’t ever challenge the world like that because me having the knowledge I do I should of said “Hey umm you can’t see if they are cancerous or not as it’s an ultrasound”. However, I failed doing so and now here we are.

Fast forward back to present day. The oncologist goes over everything I explained above, asked why I didn’t do RAI and so forth for me to have no answers. I explain my blood work which my thyroglobulin antibodies were fine but my actually thyroglobulin was elevated( this only happens when there is still cancer present within the body and it’s typically due to an autoimmune disease).

This has my oncologist even more worried so I now go for a PET scan next Wednesday. This will help determine where else I may have cancer. From here it’s lots of sleep, mindful eating and taking it easy.

#fuckcancer #thyroidcancer #cancerfughter #paraneoplasticsyndrome #fighter #real #raw #mystory #livingwiththeunknow #livingwithcancer #livingwithanautoimmunedisease #life

[thrivingwithtori]

Growing up I loved being outdoors, hiking, going to the park, riding my bike, rollerblading, and so much more. As I became a young adult I started having more and more issues being able to do this. I’d get tired, fatigued and so sore. At the age I pushed through but as an adult I couldn’t do it as much. I tried for so long to keep pushing before I lost motivation.

I decided in November of 2017 it was time for me to take my life back. So I called and I made an appointment with Southern Nevada Bariatrics. I felt like this was my last hope I was having issues losing weight and all the doctors I had seen blamed everything else going on, on my weight.

As I stated in my previous post I had my weight loss surgery May 2018. Upon doing so I started losing weight but as I started losing weight my symptoms started getting worse. I went from having dizzy/blackout spells maybe once or twice a month some times every other month to daily, I started having speech problems even worse, memory loss and so much. Now I saw many specialist some meds that helped... yay hiked again ... except I fell and when I fell I fractured my L2. Most people this wouldn’t have happened but I too of all my various health issues I also have degenerative disc disease.

So no hiking for awhile. Random issues still presenting itself. Finally had my surgery for my thyroid cancer(fuck this cancer). This should be the fix all. Boy was I wrong. I’ve progressively got worse. I tried so hard recently to go for a hike and upon doing so I over exerted myself to the point my brother forced me back down the mountain. I had about 12-15 close calls with my black out while going up.

We got back down and I eat my taco get in to start the car and my leg wtf my leg it was shaking so badly. I’ve lost control of my muscle function. I had to wait a good 10 min to help it calm enough for me to start the trip down the mountain. Luckily my foot didn’t need to be on the gas I coasted and we finished our day.

By the end of this I was exhausted but no rest for the wicked I had things to do the following day. I woke the next day and my body was screaming at me “stay in bed you need rest”! Did I listen? No of course not. Instead I pushed it. The following day I was sick and when I say sick I mean I felt like I had a flue I was cold but I was sweating and feeling like I was burning up but I was cold?!?!? What the fuck is going on with me and why?

This is just portions of my journey fighting the unknown and there will be more to come!

#thyroidcancer #paraneoplasticsyndrome #livingwiththeunknow #mystory #real #raw #truth #fightthegoodfight

[thrivingwithtori]

Warning I know I started my last post out strong but after awhile of explaining I get tired so I shortcut shit! Sorry!!!

[thrivingwithtori]

Life hasn’t always been easy for me but I’ve always found ways to make it a bit easier. I’ve struggled so long facing the unknown and having so much other things consum me it’s unreal. That’s one of the reasons I’ve started this blog.

Since I can remember I’ve struggled with muscle spasms, memory loss, speech issues, dizzy spells, black outs, insomnia and migraines.

As a child I literally never slept I was always just wanting to go, go, go. I’d keep my parents up, my aunt and my siblings just because I couldn’t get settled. I was always restless. However, it never messed with my energy levels. Once I got into my preteens I would start to get the worst migraines, muscle spasms and occasionally would have issues with my short term memory.

Most parents may be alarmed by it but my parents just didn’t think anything was wrong and it was me growing. Until I had my first ever flare up. At 15 I remember having to call my dad and tell him something was wrong and I needed to go to the doctors. He asked what was wrong and I told him I had lost control of my mobility every muscle in my body hurt and was stiff, my skin felt tight, I had the worst fever ever and I felt lost. My dad rushed over to get me and take me to UMC ER where the Drs poked me, yelled at me to calm down and treated me like I was faking. They told my dad I possibly had mono.

Well after hours of tests and scans they found nothing so they sent us on our way. How is it I’m suffering with all these symptoms yet nothing is showing it made no sense. I would randomly suffer from these flare ups yet nothing would be done because well the doctors could never find anything.

Flash forward to me being 20 and pregnant I started rapidly gaining weight. Over 100lbs. Wtf this isn’t normal I don’t understand. Doctor after doctor I must be, being lazy. No I worked out 5 days a week, I ate healthy, and I took my vitamins. Still nothing was found, however my symptoms would get a bit worse.

A couple years pass I’m still having issues with my muscles and some mobility issues but I continue to push through. I’d have random flare up where I would spike a fever, become lethargic and lose mobility. my ex would rush me to the hospital just to be told nothing is wrong with me. If you are wondering yes it drove him crazy.

I remember I was at the laundry mat doing laundry one day and my joints locked up and my muscles started to spasm. I freaked out grabbed my phone the best I could and called my dad again. He was always my hero. He rushed to where I was helped me load everything and helped me get me, my vehicle and everything else to my house.

Here we go again more doctors and guess what? Nothing! I have a scare with finding lumps in my breast thinking I have breast cancer(it runs in my family). I’m told no but I need to have regular mammograms because of the history. I have a pap done and cancer is found. I was devastated but how could this contribute to my health?!? I have surgery to remove it all have to do checks ever 6 months until I have 3 cancer free paps. I made it the next 3 were all clear. Whoop whoop. To bad this wasn’t the end.

I continue to have all my issues. At this point doctors started blaming my weight so I would just push through things or stay in bed to avoid it. Fast forward i have weight loss surgery May of 2018 to see if the doctors are right. Nope not the case.

Within the first 9 days I have issues and have to go back into surgery. I come out feel somewhat better but here comes my migraines and the dizzy/black out spells again. Omg I haven’t suffered in ages with these but I have everything else. Once again every doctor I go to thinks I’m insane. I finally find my current primary and she starts sending me for further testing. I mean the works cardiologist, neurologist and so forth.

I get told I have low blood pressure from cardio . Neuro at one point said one of my tests show silent seizures and well an ultra sounds revealed cancer again except this time in the thyroid. This makes no sense. I get my biopsy it confirms, have my surgery for a full thyroid removal, still positive for cancer, get told I may have an auto immune disease and here I am still suffering.

This is me living with the unknown!

#livingwithanautoimmunedisease #livingwithcancer #livingwiththeunknow #thyroidcancer #fuckcancer #autoimmunedisease #paraneoplasticsyndrome #real #raw #mystory #life #mylife

[thrivingwithtori]

Truth 💜

what they don't tell you about being a thyroid cancer survivor:

the amount of unimaginable mental breakdowns you will have because your levels will never be right

[thrivingwithtori]

What a normal thyroid does

What’s your Thyroid up to right now?

[thrivingwithtori]

me: I have [insert condition]. It’s actually chronic, so I’ve had it for a very long time. 

heathy person: You can fight through it and defeat it! Have you tried dieting and yoga?! 

my chronic condition: *cackles* *proceeds to flare up*

[thrivingwithtori]

Paraneoplastic Syndromes

SQUAMOUS CELL CA:

HPO and digital clubbing - most common.

Hypercalcemia - produce peptide similar to parathyroid hormone.

SMALL CELL CANCER:

ADH secretion - small cell.

Eaton Lambert - prox muscle weakness and muscle strength increases(not decreases like Myasthenia Gravis) with use.  Associated with small cell. 

Peripheral neuropathy - small cell and less often squamous/adeno

CARCINOID:

Carcinoid syndrome - associated with liver mets;  flushing,fever,nausea,diarrhea. L heart valvular lesions (unlike gastric carcinoid which involves R heart)

Zollinger-Ellison

Hyperinsulinemia

Acromegaly

Cushing’s syndrome - ectopic ACTH secretion; assoc with carcinoid and less often small cell

ADENOCARCINOMA:

Thrombophlebitis - adenocarcinoma

Source = Thoracic Imaging - Pulmonary and Cardiovascular Radiology, Webb.

[thrivingwithtori]

Living the life with the unknown.

So I started this blog off as my story of me and my life, however, after lots of consideration with my therapist We’ve decided to change it.

I’m not saying my life story isn’t important as the beginning to now is all very much important. The issue is I’m not in the headspace for that just yet as I have much I don’t remember. So this new blog is going to be the journey of me and my journey of living life with the unknown illness that has consumed me.

For the last several years if not most of my life I have been dealing with so many illnesses or side effects of those illnesses. Since I could remember I’ve always had a balance issue which has led to various other issues like falling and so forth. As I got older it started leading into muscle pains and cramps, that then led into pain within my joints/bones.

Dr after Dr and nothing could be found. I’ve gone from diangnosis to diagnosis and am still semi living with the unknown of what’s truly wrong with me. Until I found my amazing Dr I have now. I’m not saying she’s figured it out or that we are close but we have successfully figured out quite a few things. So stay tuned as I tell my journey of living with the unknown.

XOXOXO