Less than one month til my 1 year anniversary of being told “You have cancer”

I was on one of my support group sites today. And a fellow THYCA warrior posted this:

“Sitting here reflecting on the past year of adventures. I remember how my breath left my body when I heard “you have cancer” for the first time. Everyday was a fight to continue to push forward. Your perspective changes on how you look at everything. You feel so alone, then one day you realize your not going through this alone. Millions of other people of all ages are fighting for their life just as you. I know my fight is far from over and I hope this cancer battle will make me a better person, and I can inspire someone else to muster the strength fight for one more day.”

How can I say anymore after reading that?

I just had to share, because Ron said it perfectly. And because his words help keep me going.

Thanks Ron.

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Been awhile…. I’m still here….

Life certainly moves on and time flies by when you’re not really paying attention.   HI!    It’s been quite a while since I”ve posted, I see.  Since I just finished with my radioactive iodine treatment.  Crazy.  I’m still here! lol.  I don’t even know where to start… so I”m going to RAMBLE. What’s new right?

At this exact time, I’m a little tired. I’ve switched shifts at work, and now work 12 hour days. 7 p to 7 a. And I can’t always fall asleep during the day, so exhaustion is my middle name.  I think I”m always tired. Sometimes I think I could just sleep my life away.  I fall asleep standing up. I fall asleep sitting down. I fall asleep during movies. LOL  Funny there…. I took Luca to a movie. It ended, and she looked at me.  She said “Nana, are you awake?” I said “Yes, Luca, I am”  She said very exhuberantly, with a bit of proudness in her voice, “GOOD JOB. You stayed awake for the WHOLE MOVIE”  Yeah. Story of my life.

My medicine is still being adjusted as my numbers are still off. I’m still hypo, which is not good.  (I”m supposed to be hyper to keep my metabolism up and my cancer away) Hopefully my body starts absorbing the medicine and I get to where I”m supposed to be. Hypo is not fun. I”m always tired. My braindeadedness is just awful.  I hurt. I ache.  I could go on. But, I think I”ve already complained too much as it is.  I feel a little better than 3 months ago. My calcium and Vitamin D levels are up, so that’s helping with the cramping and aching a little bit.  My voice is still there.  I get hoarse. I get squeaky. I can sing a LITTLE BIT if it’s very quiet and in a lower octave. But, not much in the way of range. LOL I’ll start singing along to a song, and I’ll get a line out.. and then I can’t sing the rest…   But, I can speak, and I can even yell a little bit now. So… improvement bit by bit.  There’s still hope that someday I’ll sing again. I realize it’s only for myself and it’s selfish, but… those of you who do things for yourself will understand!

I learn every day that doctors are asshats. They just don’t get it.  Thyroid cancer is one of the most frustrating things ever.  To have to deal with US insurance, the FDA, and all of the crap that goes along with it is just irritating. Doctors go by numbers not people.  The pharmaceutical companies own the government, limiting our medication options.  It’s a fight.  I’m glad to say that I’ve learned so much and that I have a great resource of other thyca friends out there that help me out with information.  Advocate for yourself. Research.  It’s the best thing you can do for yourself.

I am a bit of a loner. And loser… lol I don’t do much except for work and spend time with family. I admit I”ve been a really bad friend because I don’t take the time to talk to my friends like I should. They stick by me and love me so much, and I’m just too tired all the time.  I’ve got to work on that. That’s my goal… lol I hope I can accomplish it.

There’s really nothing new. Bloodwork every six weeks. Tube down the nose and throat every six months (Boy that’s fun) Ultrasounds and biopsies.  Full body scans. I should buy stock in Dean Insurance. ROFL.

 

I’m still not considered in “remission” as I still have cancer markers in my blood. We will see how the med change and time works on that.  One day at a time. Some days are ok. Some days really suck. But each day is a day that I’m so grateful I’m here. So even when I feel like shit and just want to crawl into a hole…..   Well, maybe not at the exact moment….   I’m grateful I’m here. It could be worse. It could be so much worse. So, I deal with myself. I deal with what I have and who I am. I try to get through each day. I try to keep exercising. Keep working. Keep eating healthy.  And live… because I have a lot to live for!

 

I’ve lost friends and family to cancer. Some losses more recent.  And I still am of the firm opinion that CANCER SUCKS.

 

It does.  It sucks. But you know what? It doesn’t always win… I’m going to keep kicking it’s ass to the curb!

 

 

RAI complete…. whew.

It’s been awhile since I’ve posted… so I thought I’d better get on here and send out some WORDS.  Right at this exact moment, the one that comes to mind is COLD.  That’s simply because I”m freezing my butt off.

Let me be the first to say that a low iodine diet has got to be THE hardest diet in the world to follow. Seriously.  No dairy… that’s easy. No gluten… that’s pretty easy too. No salt… no problem. NO IODINE????  Oh my word…  Let me just say that the FDA does NOT require that companies list whether they use iodized salt or not.  SO, if it says SALT in the ingredients… simply don’t eat it. However, it’s not that simple. Because there are about 7 seaweed products.. derivatives.. additives.. whatever you want to call them… that are in things. That are iodized.  Oh. And might I add that NON DAIRY coffee creamer… yeah, it’s NOT non-dairy. It says right on most of them CONTAINS DAIRY.  How is that non dairy I ask you?  MMMMMMMM   Good question. Well, anyway… after a very irritating time shopping, I settled on a very simple diet. Applesauce, oatmeal, grits, and fresh fruits and vegetables. There were the occasional Lays potato chips or natural granola bar (yuck) that I found to supplement my palate.  My Thanksgiving ended up being quite good, thanks to my sister Christine. She made me some yummy foods to eat that were totally within my diet. I am very grateful for that.

My vitamin D levels feel like they are finally starting to even out a little bit. The agony in my joints is not quite so horrible anymore. It’s still painful, and I still have a hard time with my hands and knees, but not as awful as it was before.  It’s manageable with pain meds and OTC things like Tylenol and ibuprofen.  I don’t go to my car and sob at work anymore because I”m in so much pain.  I don’t wake up crying in the middle of my sleep because I hurt so bad.  I still can’t open a water bottle, or do other things, but it’s better, and it continues to improve a little bit every day.  I would love it if the pain were just completely gone, but I think that might be wishing too much.

I wish I could say that my brain fog has improved.  Nope. But thankfully I have a smartphone, and that sucker literally saves my life sometimes.  With the amount of medicine I take on a daily, the alarm clock alone is my savior. I take pictures of where I park my car, so I don’t get lost in a parking lot.  I send myself text messages and important reminders, and I write myself memos.  It’s a great thing.

My Thyrogen shots kicked my ass. But, even with how awful they made me feel, it was better than being a zombie for 4 weeks.  I set up my little isolation chamber.  My bathroom was pretty cool, quite cozy, like my own effeciency apartment! lol.  The day of my RAI I was terrified. I mean, HELLO they are giving me a radioactive pill. Like, Gamma Radiation like the INCREDIBLE HULK dudes…  I got a tracer dose of RAI, and then a full body scan to see how much thyroid tissue and cancer cells there were. That determined my dosage.  After seeing what was there, doing a couple blood tests as well ( I was complimented on my AWESOMELY low iodine level), they determined that  a mid-level dose was good. So, that was nice.  The pharmacy had to make my poison, so I snuggled with Mike in the waiting room, and got some hugs in before I was unable to touch him.  Then I went back in the room with all the radioactive signs and lead barriers and stuff. It’s a little intimidating.  There’s this big bottle that was about the size of a 20 ounce soda… and inside of the lead linings and such was a tiny little pill…. lol   I sign all of these papers, they tell me no sex for 2 weeks, no this no that… all of the isolation rules and such… and then I am given this thing and some water and told to swallow…. and that was it. They waiting 20 minutes, and then came in with a geiger counter to make sure I was below a certain level. I tried to take a pic but they wouldn’t let me….  lol  I was good, and told I could leave.  Like, I’m setting this geiger counter off to the top… and they just let me walk through the hospital to leave. CRAZINESS.

So….. home and isolation.  It was really hard with my husband 20 feet away and not being able to hug him, kiss him, or sleep with him. Just to be in his arms and have his comfort would have made me feel so much better. Listening to Claire root around the house, knocking on my bedroom door, crying Nana for me… It was awful.  Kayla made me coffee every day, and brought food the appropriate feet away and left it there for me.  Mike moved the tv so I could open the door and watch satellite.  He visited with me from the other side of the room, and he texted me a lot.  LOL  I was pretty miserable at first. SO tired, and nauseated. I had anti-nausea meds, so I wasn’t throwing up, just felt like I wanted to. My head was pounding. My glands were swollen. My throat hurt. I was exhausted. I was hot. I was cold.  it sucked. And I had a mid-level dose. I can’t imagine what people who get higher doses felt like. 😦

Karla and Bri came up Friday night .SURPRISE and brought me a goodie basket for Saturday, when I was finally allowed off of my LID.  Seriously… it kicked ass. Brownies, cookies, gummies, wine, alfredo lasagna roll ups…. I taught my daughter how to cook… I’m so glad!!!   🙂  Then Saturday came.. Mike went and got me breakfast from my favorite restaurant.  🙂

Can I just put in here that I love my family to pieces? They are so amazing and wonderful. I am so blessed to have them.  I have AWESOME friends who kept me so positive with their texts and facebook posts… the cards I got in the mail, the prayers I received, the care packages I got…   Truly truly blessed to have them all in my life. I can’t even begin to thank them enough for being so awesome.

The shit …. my hair. 😦   I don’t know if it’s because I was wearing a headband and the sweat.. the radioactive sweat.. made my hair fall out… or if I just have crappy luck, or both.. but , shortly after I finish this, I will be shaving off what’s left of the hair on my head.  I’m trying to look at it this way…. it’s just hair.  I’m REALLY REALLY trying.  We shall see how long I can pull off that positive attitude before I bawl again.  It’s just hair.

I do have one gripe, and I know I’ve said it before… but please PLEASE don’t tell someone with Thyroid Cancer that HEY, it’s the GOOD cancer.   Or have the balls to say that’s it’s not REALLY cancer because it’s so easily cured.  That seriously pisses me off. You .. (not you… the idiots who say that)  have NO idea what I go through  on a daily basis.  The hair that’s gone.. that was falling out and thinning and brittle before radiation. The agonizing joint pain. The exhaustion. The stomach issues. The vitamin deficiencies .The exhaustion .The brain fog. The exhaustion. The invasive tests every 3 months. The expense. The brain fog. The exhaustion.  Yes, I said that again… because it’s horrible.  The throat pain. The neck pain. The fact that I can’t yell or scream for help if I am in a bad spot. The fact that I can’t sing anymore. The fact that my voice is not my voice.  The fear that this GOOD cancer will go to my bladder or liver or pancreas, because it has the highest recurrence rate out of any cancer.  The fear that someone in my family will get it. 😦  I take 20 pills every day just to make it through the day.  Then there is that one day a week where I take 24.    This is not good cancer.  And it’s definitely very real and very debilitating.  So please , don’t be so ignorant that just because you don’t see the physicality of it, that it’s not real or awful. It’s cancer… there is no such thing as good cancer.

On that note, I am going to go. I have an appointment to go lose what’s left of my hair. Embrace the bald…  lol.  I think I can rock it.  I also have a couch that is calling my name. I’m so tired.

There are so many others who are in this same boat.  So many others who are worse off than me. Pray for them.

Strength. Hope. They are not just words… they are life.

 

 

No good food for Turkey Day…. at least I can eat the Turkey!

Well.  I went to my appointment for me boobs. LOL   I don’t have breast cancer.. at least according to the ultrasound and mammogram… but I do have cysts that are getting bigger by the moment, so they are going to get drained.  Yeehah.

I also went to my endocrinologist.  Good news, I think.  Thyrogen shots are almost always approved of by my insurance, and in my circumstance (with all of my hypo symptoms) going off of my levothryroxine is not a good idea and thyrogen shots my best bet. Pending insurance approval, and approval from the radiology department at the hospital who administers the radioactive idoine treatment, I will be getting my shots the first week in December, followed by my RAI.  So, instead of taking 6-8 weeks off of work and being a zombie, I’ll only be off for a couple of weeks. So that’s good news. Bad news… I still have to do 2 weeks of no/low iodine before that.. which is over Thanksgiving. The list of CANT EAT foods is insane!!!  At least I can have turkey.. and I can still have coffee thank GOD For that…. but no dairy at all (just one of many no’s).  That is going to be hard!!!

My doctor did a few other tests, because she said that I “really shouldn’t be feeling this bad” and that my hair falling out was not typical.  I like my doctor… but from what I hear from other thyca survivors, my symptoms are pretty common. Maybe she just doesn’t want to tell me that my life is going to be sh** from now on.. LOL

 I did figure out the uncommon sudden hair loss.  Hair is dead skin cells. And like a lot of things, is a timeline of your body (kind of like rings in a tree.. you can see when the tree had a bad time in the rings?)  Well… the rate of my hair growth combined with where the huge clumps broke off coincides with the timing of going into hypothyroidism after my surgery.  My hair was just tortured.  And it said screw it, dump the bad. The hair I have growing in now, albeit thinner in many places (yeah, all over), is healthy and good.  So, hopefully no more falls out like that and it just thins.. and hopefully as my meds get better, that doesn’t happen anymore either. 

I’ve gained too much weight back. Apparently my diet isn’t working… so time to go crazy and really get into it.  I didn’t lose as much weight as I did just to gain it back because of my stupid errant thyroid.  I will not be tortured with one year of thinness and then back to my fat pants. I can’t let that happen.

Work has been slightly better after I changed the time I take my meds.. so that’s a positive as well. Along with a great supplement I’m taking, and some diet changes, I’m starting to feel at least a modicum of relief from some of my symptoms. Good news, right? 

So I’ve joined all of these great sites and support groups. I find they really help me.  Talking to hundreds of people who are in the same boat as me is such a comfort.  I love all of you, my friends and family… and I appreciate your love and support, but aside from a couple of you who’ve been through it, it’s really hard to explain the feelings and pain of everyday life. And to talk to people who have the same complaints… makes me feel better, actually!  Who knew that I’d be thirsty all the time? The other thyca survivors having the same issue…   Plus, I’m finding being able to support other people and try to help them through their downs actually makes me feel a little bit better about life.

One thing about this stupid cancer I’m liking.. though I’m not sure how my husband is digging it, or some other family members will….   I’m getting another tattoo.. LOL   I’m going to blend it in with the one on my left arm, so it won’t be crazy.  I’ll post pics once I do it. I said my Johnny tattoo was my last…. lol who knew I’d get cancer and would have to get a survivor tattoo? I mean, really.. that’s just craaaaazzzzzyyyyyyy.

My kids have taught me one lesson in the last few weeks… no matter how bad I feel, I really need to take the time with my appearance to look like a normal human being.  LOL  My wardrobe choices, along with a few other NO NO’s, have not been quite so becoming.  I used to get “you look 25”  and last week I got a guess at 45. yeah… Time to take a few minutes for myself… LOL

My family is doing all right through this mess. They are very helpful, even though I’m sure at times they resent the fact that I can’t do crap half the time.  Brianna and Kayla are amazing, and Mike is the best thing that ever happened to me. My friends… oh my goodness, my friends… The surprise visits from these people… it’s nuts. I love you all.  Jimmy… I think he’s having the hardest time with the whole thing.  He hates my hair, but likes my hair… The style is cute, but he hates it because it reminds him that his mom has cancer, and he has a hard time with that.  I keep trying to tell him I’m going to be fine, I am fine… but he’s still bothered.  So, anyone who knows him, give him a hug or something…   The girls probably need them too.. they are so strong and supportive, but I’m sure it’s not easy on them either. I’d say hug Mike, but one.. he’d kill me for saying that, and two… I’m not too sure how he’d react to that! LOL  He’s a great guy, but I’m definitely the outgoing one in the relationship.

Well, off to go get something accomplished. I’m out of clean clothes, in desperate need of coffee, and have a lot of stuff to do if I’m going to be dressing up like a harem girl and going out for Halloweeen. LOL

Have a great day ya’ll… and remember, ATTITUDE IS EVERYTHING. If yours is shit, expect shit in return. Peace out.

 

 

Starting to get nervous

I have three Dr visits this week. One with a speech therapist to check on my vocal abilities ever returning. That’s Tuesday. Thursday I have a diagnostic ultrasound and mammogram for my boob and its issues that aren’t going away. Wednesday is the endocrinologist.

Wednesday I find out if I go off my meds into walking dead hell for 4 weeks prior to my radioactive iodine or if I can qualify for Thyrogen shots. Hopefully Thyrogen is an approved option or I’ll be taking a LOT of time off of work.

I have a lot of friends and family who are so very supportive and I’m so grateful for that love. I don’t know if I ever thank you or not… so thank you. From the depths if my soul.. thank you.

I’ve joined a few support groups on Facebook and I’m now part of an even bigger group of family.   Its great to be able to talk to people who know exactly what I’m talking about and what I deal with.   And though i don’t wish this on anyone ..  its nice that I’m not alone in how I feel. Who better to give advice on how to deal with this or that than someone going through it?

I had a great day with the kids, the granddaughters, and Brianna’s friend Ceci  at the pumpkin farm today. Starting to feel it though. I’m learning little tricks here and there, but I think I’m going to end up really paying for those fun days.

Getting more comfortable with the hair. Enough that I actually took a new Facebook profile pic. That’s a gigantic step yo.  Everyone seems to like it, which helps I think. Confidence has never been my strong point.

Happy Sunday. I pray every day that God grants all of you happiness and health. 🙂
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October 12

I’m horrible at sending birthday cards, I’m even worse at returning phone calls…. so blogging on a regular basis is probably something that isn’t going to happen. LOL So when the mood hits… you’ll hear from me. 🙂  If you know me, you know that’s how it rolls in my hood.

It’s the waiting game again… lol. I have an appointment on October 23 to set up my radiation, and to get a game plan rolling. I”m hoping to take a shot or two of Thyrogen and not have to go off my medication. If I have to go off of my levothryroxine, I’m going to be the walking dead! Not looking forward to that, so hoping the alternative will work for me.

In the meantime, I saw Mary again the other day. To clarify, she’s not an MD she’s a nurse practitioner.  She’ll be the first to tell you she is not a dr. But, to me, she’s my doc.  I love the woman to death. Who else gives me hugs and tells me she loves me at the end of my appointment? And honestly sincerely means it? She spends her summers doing “Doctors without Borders’ And similar things.. She’s amazing, and I’m so lucky to have found her.

Anyway…. her and I had some deep down discussion after she got done doing another breast exam.  I have an appointment set up (or it’s working on getting set up) for a follow-up mammo and ultrasound for the cysts in my right breast.  They are getting bigger, so I’m probably looking at some kind of procedure there.  I’ve got a tumor under my left ring fingernail… but that’s on hold right now, since it’s just a fatty tumor (yeah, I have FAT fingers.. go ahead, make the joke).  I have a cyst in the valley of my spine, but that’s going to wait a bit too.  I’m just falling apart.

The diet changes and med changes from 2 weeks ago are helping a little bit. Having pain meds for this horrific joint pain is definitely a plus. No red meat has already made a big difference, and so has the no tomatoes in any way, shape, or form.  Still rough… I drop stuff because I can’t hold onto them.  It’s sad when I have to ask someone to open my water bottle because I can’t unscrew the lid. I got one that has a slide…. LOL.

Mary’s big into holistic healing. So along with a lot of diet changes, which honestly are healthier for me anyway, she’s also giving me a lot of mumbo-jumbo stuff as some people would call it. Meditation, breathing exercises, etc. So, we’ll try it and see how it goes.  I’ve got an open mind, and there are many things that I think are worth trying and worth the time and effort I put into them.  Plus, in simple terms, I trust the woman, and if she says it’ll help, I honestly think it will.

Since I stopped eating red meat and need to supplement my protein intake, and also because I am STARVING all of the time,  I’m going to be taking a whey protein product? It’s powder.. you mix it with water or into your food.  It will give me the protein I need, while at the same time, it will also help so I’m not hungry all the time.  Good thing, as I constantly want to eat BAD STUFF.

It’s really hard not to drink soda, energy drinks, and bad stuff to keep me awake while I’m at work.  But, I’ve found since I started supplementing with the b12 and such, it’s not as necessary. Plus, I love coffee, and it’s starting to be cool, so hot coffee is not so bad at 2 am.  It’s different when it’s 110 degrees.. I mean, a cold soda is just SO much more refreshing! LOL

I’m getting used to this short hair.  Took me a few days… it still bothers me. But, I’m noticing I am cooler at work! I don’t have to put it up, which is good. It’s less wear on the hairline without having to wear a ponytail holder.  It’s a cute style, and a lot of people think it’s just adorable. So I guess I’ll take it.  It was funny though.. the first day I went to work with it cut, I got “WHY THE HELL DID YOU CUT YOUR HAIR” and “WHAT THE F*** DID YOU DO” out of a few people.  Yes, I’ll admit, I did cry like a baby when they said that. I mean, it was a traumatic experience. LOL I’m getting over it….   slowly……    I miss my hair!!!    It was really pretty……      ugh……   it’ll grow back!!!   Having my husband tell me that if it means spending one more day with him, he’s fine with me being bald, because I”m his best friend and he’d be lost without me.. aside from making me bawl, it certainly made me feel a LOT better. 🙂

I’m still having a major issue with the whole breast cancer awareness crap. I know.. breast cancer is a major cancer and many women suffer and die from it. But, it’s NOT the only cancer out there… and OMG so many companies are throwing fundraisers and stuff for it… and it makes me wonder… do they that for lung cancer? And colon cancer? And pancreatic cancer? And …. you get the point.  Why only breasts? Because they have a good marketing campaign? I know.. I”m just bitching…. I’m sure I’ll get over it.

So… here’s one more thought before I leave you. Because it’s been on my mind, and I want to share.  Even though it’s been almost 24 years, my god, since I’ve seen my brother, I miss him so terribly.  I know..  that long, I should get over it… (yeah, I’ve had that said to me).  But, he’s my brother, and I love him, and I miss him.  But that’s not the point. My brother Johnny loved Van Halen.   Listened to it all the time. So anytime I hear “Running with the Devil” or any old Van Halen songs like that, it makes me think of him.  So…..    here’s my observation.

In the last three days, I have encountered 3 young men named Johnny. One was humming Van Halen (had no idea what it was, just that it was stuck in his head), one was wearing a Van Halen T-shirt, and one was listening to “Runnin’ with the Devil”      I get the point bro… you’re up there looking out for me and want me to know….. 🙂