#paraneoplasticsyndrome

[myelomacancermomblog]

As I approach the 7th anniversary of my cancer diagnosis, it's a moment for introspection. The absence of that “final" bell, signifying the end of treatment, will never be my reality, at least not for now. The perpetual need for cancer treatment and its accompanying debilitating side effects are what I’ve had to learn how to cope with daily.

Life, much like its historical cycles, unfolds in seasons. For instance, spring, a time for blooming and so many possibilities, but as we probably all know by now, that the greatest of times are inevitably followed by the challenging or the worst of times— so this would be summer, where discomfort demands some perseverance. Yet, if we manage to push through it leads us to a much needed respite which is fall, and also a season I truly cherish. Finally, there's winter, a season I relocated to avoid 😉, a season that is sometimes short and other times long but one that undoubtedly offers unparalleled room for growth.

Recognizing my perpetual winter and coping with these seemingly unbearable days there became a crucial question. How can I possibly continue to endure this season any longer? The answer has recently emerged which involved developing some sort of future vision for my life. I already can predict how that looks weekly, so I continue to brace myself for the challenges, perhaps a lifelong affair. Yet, intertwined with the struggle are precious moments with Jackson, Jason, family, and friends—basically all relationships, an irreplaceable gift given from this season and cancer.

This journey has transformed my perspective on God, my relationship with Him, and my connection with my Savior Jesus Christ. There's a far deeper meaning to this life, a realization that everyone's unique gifts, weaknesses, and experiences can enrich our lives. Seven years of battling cancer have taught me that regardless of the season, we can inspire and support one another. In the midst of difficulty, there's a shared strength that blesses us all.

And finally, because I’m super sarcastic and I do love a joke or two. I finally have a punch line that not everyone can use but one where no one should get too offended because I mean, I am the one who has cancer lol.

#multiplemyeloma #paraneoplasticsyndrome

#multiplemyeloma #paraneoplasticsyndrome

[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.

[flendoc-blog]

Lambert - Eaton myasthenic syndrome (LEMS) is an uncommon autoimmune disease in which the body’s own muscle tissues are attacked by the immune system

Read the full article: https://bit.ly/2vNBBUG

Join Flendoc.com in order to connect and collaborate with medical professionals, students, scientists and debate healthcare policy and medical practice issues

[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.

[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!

[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!

[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.

[myelomacancermomblog]

𝙄𝙩’𝙨 𝙢𝙮 𝙗𝙞𝙧𝙩𝙝𝙙𝙖𝙮! And guess what I get to do? That’s right... Cancer treatment 🙌

Listen, I don’t mind so much, I mean besides some side effects it really has given me a lot of my life back

❤️❤️❤️

And along with increasing age, also comes increasing wisdom... So here’s a few things I’ve learned along the way...

*Life can often feel unfair

*We can’t avoid hard things

*Don’t sweat the small stuff... Or the big stuff

*We can ALWAYS do better

*People are just trying their best

*Don’t EVER give up

*Tomorrow could be better

*Be nice to everyone

*Get a cat 🐈 They’re the best 😉

𝘼𝙣𝙙 𝙈𝙊𝙎𝙏 𝙞𝙢𝙥𝙤𝙧𝙩𝙖𝙣𝙩𝙡𝙮...

*𝙎𝙀𝙀𝙆 𝙤𝙪𝙩 𝙂𝙤𝙙 and your life will be better!

I truly do love y’all and feel so blessed right now! You have made my life SO much better!

#multiplemyeloma #neuromusculardisease #paraneoplasticsyndrome

#happybirthdaytome

[myelomacancermomblog]

This is such a HUGE accomplishment for me! I cooked 🙌. One of the more challenging symptoms for me to manage these past couple of years, has been my constant nerve pain along with a tremor and weakness in both my hands... Which turns a seemingly simple into climbing a mountain! Well... Cooking has been my Mount Everest.

My goal with sharing this post is to hopefully give y’all a little more hope... Hope that you to can achieve any goal you may set out to accomplish in this life even, if it’s as simple as cooking a healthy meal 🥘

#smallgains #sograteful #nevergiveup #interxhasbeenagamechanger #multiplemyeloma #paraneoplasticsyndrome #nueromusculardisease #healthy #lowcarb #chickenenchiladas #macrofriendly

[myelomacancermomblog]

"𝒀𝒐𝒖 𝒂𝒓𝒆 𝒔𝒕𝒓𝒐𝒏𝒈𝒆𝒓 𝒕𝒉𝒆𝒏 𝒚𝒐𝒖 𝒕𝒉𝒊𝒏𝒌 𝒚𝒐𝒖 𝒂𝒓𝒆"

I’ve been working really hard these past few months for this baby muscle of mine... Even with shingles and all (which I don’t recommend btw) 😣

It’s now another treatment day which also brings that dreaded steroid day... dexmethasone, or in the myeloma world “dex days” 😳

✅ 𝐦𝐨𝐨𝐝 𝐬𝐰𝐢𝐧𝐠𝐬

✅ 𝐰𝐚𝐭𝐞𝐫 𝐫𝐞𝐭𝐞𝐧𝐭𝐢𝐨𝐧

✅ 𝐢𝐧𝐜𝐫𝐞𝐚𝐬𝐞𝐝 𝐚𝐩𝐩𝐞𝐭𝐢𝐭𝐞

✅ 𝐰𝐞𝐢𝐠𝐡𝐭 𝐠𝐚𝐢𝐧

✅ 𝐬𝐩𝐢𝐤𝐞𝐝 𝐠𝐥𝐮𝐜𝐨𝐬𝐞

✅ 𝐬𝐥𝐞𝐞𝐩𝐥𝐞𝐬𝐬 𝐧𝐢𝐠𝐡𝐭𝐬

✅ 𝐬𝐰𝐞��𝐭... 𝐬𝐰𝐞𝐚𝐭 ... 𝐚𝐧𝐝 𝐦𝐨𝐫𝐞 𝐬𝐰𝐞𝐚𝐭 😓

But also....

✅ 𝐡𝐮𝐠𝐞 𝐚𝐦𝐨𝐮𝐧𝐭𝐬 𝐨𝐟 𝐞𝐧𝐞𝐫𝐠𝐲

✅ 𝐨𝐩𝐭𝐢𝐦𝐚𝐥 𝐭𝐢𝐦𝐞 𝐭𝐨 𝐦𝐚𝐱𝐢𝐦𝐢𝐳𝐞 𝐲𝐨𝐮𝐫 𝐰𝐨𝐫𝐤𝐨𝐮𝐭! 💪

It’s official, 9 months of treatment ... done ✅

And I probably only have like a lot more to go 🤨

#myelomamotived #multiplemyeloma #neuromusculardisease #paraneoplasticsyndrome #fitness #myelomafitness #macrocounting #cancerfitness #nevergiveup

Thank you to the best OT/PT outpatient therapy team in Dallas! www.thereXtherapycenter.com