Good news finally!

Got awesome news yesterday from my endo. He emailed me through my health track (It's something UPMC has that you can not only communicate with your doctors, but also see all of your lab and tests results, request medication refills, do all of your appointments. It pretty neat actually) he told me that my TSH is where they want it and my thyroglobulin is pretty low it's 2.0 actually so he said there shouldn't be any surprises when I go to do my thyroid studies in April. Which is awesome news, hopefully no spread to my lungs, or bones, or anywhere else! Expect the worst but hope for the best, that's what I told him. I finally feel like I can breathe, and to have this news given to me on Easter weekend just has so much more significance.


An update on my FMLA, this is how much of assholes the hospital I work for is being to me.
I went down to my HR the day before my doctors appointment to pick up FMLA papers so my doctor could fill my paper work out. Now I knew on Wednesday I was still 10 hours short of having all of my hours in, but it being Sunday night I have worked all those hours and then some. And also mind you I still have my FMLA papers in my possession, I have not turned them in. Well before leaving for work yesterday I checked my mail and in there was something from my place of work. I open it and what is it, nothing else but a denial letter denying me my FMLA that I never even filed dated for the day I went down to pick up the paperwork! How can you deny someone something they haven't even filed for? And it was for nothing more than not having enough hours in. Really? Ok I'll come to work radioactive. Just sit me in the decon room all day. But that's right you don't even know what I need an FMLA for let alone when I need it for since you never laid eyes on my paperwork HR! I would be very ashamed to work in that department, and at times am ashamed to work for that facility. It's a very sad loss for humanity, but I'm going to keep on fighting the good fight because that's what I've got to do! Because I know this world is not a total loss. Caner has given me a new lease on life and I do see beautiful things in this world where I once did not see them, and I also see ugly things in this world too, you just have to realize that even though you can't fix all of the ugly you can fix some of it. So I'm starting with my HR department. Wish me luck, because no one who is sick should have to worry about this.

I am emotionally exhausted. I spent another day up at UPMC, although this time we had a much easier time finding the correct building, we even got valet parking. I might even attempt this trek going by myself one of these days!
This was my first encounter with my endocrinologist Dr Hodak. I like him, actually I don't think I haven't met anyone from UPMC that I don't like yet. I can't say enough wonderful things about them, even if they are expensive as hell. I guess it's true though its what your money can buy, but it's not my money it's my insurance thank God. I'm finding out this cancer thing is getting to be very expensive.
Back to Dr Hodak, he was very straight forward and told me that despite the very large size of my tumor that my cancer is currently only a stage I. Now that being said he also stated that my cancer even though its not a variant form of papillary cancer it does seem to be very aggressive and it was breaking out of the lymph nodes into the surrounding tissues and that he would not be surprised if it was found it my bones or lungs. I really don't want to be one of those rare cases of distant spread, but that is my luck. He also said that I had a higher chance of my cancer coming back, about a 15-20% ya know what fuck you cancer. I'm so angry at you. I did not cry when he told me all of this, I only started crying when he asked me if I had any children and how old they are. The thought of my children being robbed of their mom just hurts into the depths of my being. Every time I receive bad news and I just want to lay down and give up then I quickly remember what I am fighting for.
The game plan is for me to receive my RIA treatment on April 24th. I have to travel to Pittsburgh and back (an hour each way) for my thyrogen injections which I will receive on the 22nd, and the 23rd. Go up again on the 24th (with the price of gas im going to be so broke :( )for my tracer dose and my whole body scan, wait for the results up there then get my therapeutic dose. Then I go into isolation for one week. I was told to stock up on lemons, water, Gatorade, and anything I was craving that I cannot have while I'm on the low iodine diet, which I'm finding out is a lot. I can have lean meat ( no seafood), veggies( no beans, or potato skins, and fruits, and that's about it. All dairy is out. Oh I can have some grains as long as they don't contain anything iodized. Bleh then I go back up on they day I get out of isolation on April the 30th to have another whole body scan. My theme song will defiantly be radioactive that week.
The only silver lining I can find is that I will most defiantly have enough hours in for this friggin FMLA. Until then I get to work my Easter away at the hospital, which I still have not got my kids anything yet. I just got my first paycheck yesterday and I've seriously worked every damn day. My only day off was yesterday which the whole day was spent in Pittsburgh, so guess what I will be doing at midnight tonight.
I'd like to share with you this awesome booklet they gave me when I went up there yesterday. It still doesn't make me feel any less alone but my nurse was so awesome, I think she will be my best support system yet and seeing as I don't really have anyone I need that. I mean jimmy is here, but he doesn't understand he only gets it from the point of a family member and not a patient standpoint. I have good days and bad days, and I'm allowed to have bad days, this just makes my head spin sometimes and he just doesn't get that. He also doesn't get how some days I feel so tired or I don't want to do anything, and I hate that I have to constantly defend myself so Susan my nurse was a godsend at this time!

Nothing to be ashamed about

I have toyed with the idea about posting this for several days, but have decided to, thinking I can't be the only one this has happened to.
Seven months ago I put in my application in at some doctors offices trying to get out of the hospital. The hours are always conflicting with the ever changing/ never available daycare(for some reason they think people don't work weekends holidays, days before and after holidays, but that's a whole another story) and I never have any family to watch them. So I was looking more towards the doctors office hours. Well needless to say, it's been over seven months I never expected to hear anything. One week after my surgery I get a phone call for a job interview, what the heck? I'm feeling great and this is right up my alley.
I go in and I tell them up front I have thyroid cancer and I am nine days post op and I will need an RIA treatment, but i don't have an exact date set in stone for it yet. Well the office manager said her niece had thyroid cancer an had RIA treatment, great so she is familiar with this type of treatment and any side effects. By the way I did great on this interview, I have a degree in this, I am certified in CPR, I deal with doctors every day. No problem. They call me back a week later for a second interview, this time with the doctors and the director. It's down to me and one other woman who is seriously in her sixties(Not discriminating the whole office staff, including the doctors are young I mean twenties and thirties) I got this. I see these doctors at the hospital from time to time, and again I am up front about the cancer. I realize I do not need to disclose my medical information, but I'm taking a leap of faith by telling them, rather than they hire me and I am all of a sudden asking for a week off for RIA treatment and days off for doctors visits. I told them insurance is not an issue, I already have insurance an I know your insurance would deny me for my pre-existing condition.
Now I can hear the other woman's interview and she is giving her past work history and she said she stocked for an auto parts store. No medical background. More points for me! Nothing like being overly confident. I'm just excited to potentially get weekends and holidays off!
A few days later I get a letter in the mail from the doctors office saying while they were impressed with my qualifications and work experience they had decided to go with someone else, but would keep my resume on file in hopes of finding a position for me. Carefully tip toeing around the good luck in the cancer situation! Because that probably would be setting them up for a lawsuit.
Now I would be totally fine if I didn't get the job because it went to a more qualified person, but I am not fine thinking I didn't get the job because I have cancer. I feel discriminated against and like they are stamping me dead. It also makes me feel shamed to have this. I didn't choose to get cancer and I wanted to at least give the interview a shot and I sure as hell didn't look sick. I'm not ashamed of my scar and please don't make me feel ashamed of being diagnosed with cancer, especially by a doctor. As for now I will still be at the hospital fighting to get my FMLA.

Ok I have to vent somewhere, and since I can't do it on my Facebook, my blog seemed like the next best place to go. My cancer and my daycare are just not meshing well. I have been off of work from February 18th to March 15th, which means my children have not been to daycare. My oldest daughter has even missed some school when I went in for my surgery. I pick up my children today and find a statement in their cubby, that's fine, I'll pay it. I have yet to get a paycheck, not until the 28th. Now my problem is the fact I got charged a late fee for not paying my February bill on time. Are you kidding me!? My daycare provider knows I have cancer, and if she says otherwise she's a flat out liar. She Facebook friended me seriously the day after I signed my kids up I'm sure to make sure no one talks bad about her establishment. Secondly she had the nerve to message me over Facebook while I was off to ask me if I would like to buy stuff from her thirty-one party, but she has never once asked me how I'm doing. Why yes I've been off of work because I have cancer and have no money, but I would love to purchase something from your thirty-one party just so you can get your free hostess gift! Maybe greed really does make the world go round. But then again I tolerate this because I still have not switched daycares so.... Rant over!

This little bamboo plant makes me think of my thyroid before my surgery. The left side is being taken over by disease slowly climbing its way up, engulfing it, while the right side still thrives. Now the dilemma is do we sacrifice the whole plant, or just the diseased left side? Oh little bamboo plant such a metaphor you hold.
I finally got my pathology reports last night and my cancer was not encapsulated like papillary cancers normally are. They found it in my isthmus and in the outer region of my right lobe so it was best to remove the whole thyroid.
Now you little bamboo plant, you I will at least give the benefit of a doubt and only remove the left side and hopefully we can save at least part of you. Thrive on little plant, thrive on!

I finished my first four days back to work. Another thing I have survived, and needless to say my coworkers are outraged over the lack of empathy from the HR department over the denial of FMLA for not having enough hours in this year. Sorry cancer, come back later, or actually never. The thought of delaying treatment to put in enough working hours is absolutely asinine.
I also ran into the doctor who suggested I get an ultrasound for a goiter way back when in the first place. She asked if I had my surgery yet, not noticing my scar, I told her yes I had it almost 3 weeks ago. She asked how it went and what they found. I told her about how big the original tumor was and how they found cancer in 7 out of the 12 lymph nodes they took out, and the cringing look on her face might as well have been a spear through my chest. Being in the medical field we both know what that means. I just wanted to break down and cry right there. Then it led to the conversation of my treatment, and she said well hang in there. I know those words mean no offense, but I'm getting to an angry bitter stage of my diagnosis. Yea it's easy to say "hang in there" but when death is literally staring you in the face its not that easy. I have been lashing out at everyone today. It just not a good day in general, and I still haven't even got to the radiation part yet :/ I'm just scared, I'm scared that my prognosis is not as good as what I was previously told, I'm scared that because it was found in so many lymph nodes that its lurking somewhere else in my body. Fear of the unknown. I guess it's best that I've been busy as to not give myself time to think about all of this. Which reminds me I have 22 cupcakes to frost for Audrey to take to school tomorrow. At least I can sleep in...

I'm back to work! Yay? Lol I've worked 3 days with one more day before I get a day off, oh and I had a birthday party right after work for my soon to be four year old. Now I know it doesn't seem like a lot, but I'm just so tired. I knew jumping into four days in a row plus planning a birthday party was going to kill me but in the words of Joe Dirt "you just have to keep on keepin' on' and that's exactly what I'm doing. That and I'm busting my hump to work these 74 hours I need for FMLA before I go to see my endo on the 28th of this month to start talking about my radiation treatments, which will be in liquid form, not the traditional pill like every other thyroid cancer patient has taken. I still do not know why.
I have spent my last two working days in the ER and today I found out that one of my fellow employees lost her battle with cancer this morning :( rip Ethel. Hearing about her passing also makes me reflect on how lucky I am with my diagnosis. Yesterday we had a woman come in who had laryngeal cancer and had just come out of the same hospital as the one where I had my surgery. Needless to say she was suffering some complications and her road looked very long and hard and my heart just broke for her. I truly wish her the best. It's a weird thing when you have cancer, it's like you become part of this club and when you run into someone else who is in the same club as you the subject no longer becomes taboo to talk about. We all want the same thing, to win the battle, to beat it, to live. They understand our struggle, and our very real fear that we have from the very day the doctor tells you, "it looks like you have cancer."
Back to this birthday party I survived.My little Audrey is turning four! Where does the time go? But I am here to see it and I am so lucky for that. Thank you! And I plan to be around for many more, for both of my girls. Today we are coming down from our sugar highs from the cake but it's still a good picture. They remind me why despite all I am still blessed.

Picture this...

Just a couple of pics to get you through the day. The last one is a paracord bracelet for thyroid cancer awareness someone made for me. How kick ass is that!?

And we're 2 weeks in

So I am two weeks post op as of yesterday, which also means its time for me to return to work as my surgeon only covers up to 13 days off after surgery. I must admit I am ready to go back to work, even though I am not on the schedule until Friday. I still tire very easy so working four days in a row is probably going to drain me.
Ironically my supervisor called me yesterday to see how I was doing and when they would "expect" me back and also if I needed anymore time off. I don't really know if she is being genuine in her concern or just going through the motions. Probably the later of the two. I have no choice, I have to come back. I was 74 hours short of getting an FMLA. Another irony even though I work in hospital where there are sick people all the time, it is not acceptable if one of their own get sick. I mean c'mon, you can't make an exception. Like my cancer was supposed to wait another 74 working hours so I could qualify for FMLA? So what are they supposed to do when I need time off for radiation treatments? I told my supervisor I would need radiation, and she was like well you could just take an intermittent leave and I was oh ok, we'll that was only if I had FMLA so big fail there. So what do I do. Work 74 hours before radiation? Oh well I guess we will cross that bridge when we get to it, but bigger things await me, bigger than that hospital! Although I can't be mad. If it wasn't for the hospital I would have never known I had cancer in the first place. I just wish for a life that has the chance to flourish they wouldn't be so hard to work with. After all this is life and death we are talking about. Only God has the right to play God, not human resources.

God n' stuff

So my husband and I were talking the other night and he asked what I was going to do the next day. And I said "oh I don't know probably take the kids to church, then maybe attempt the park." And he replied "I thought you were like atheist when I first met you."
Now that statement is not exactly true. I mean I did not like to go to church, but my thought was you did not have to go to the house of God to worship God, but things like cancer come up and then there's the supportive church family who are there for you more than your own family (at least in my experience) when you go to God's house. Now I am by no means a bible thumper but I have put my faith in my doctors and God at this point and am starting to believe everything happens for a reason. So when I was at church yesterday we read a prayer that spoke to me so loudly I could barely finish it without crying... If you don't mind I would like to share it now. Just so I can go back to this post from time to time and remind myself this is in God's hands.
God of light, you do not see as others see; you look beyond our limitations and find us strong and beautiful for your purpose. Help us now to see Jesus your son who, though he was despised and rejected, became our beautiful Savior. Show us Jesus' face in the face of those who suffer, and lead us to give your healing touch to all. Amen

I think someone needs a nap

This is exactly how I felt all day yesterday.... Just gotta keep chuggin' along brothers and sisters!

Bloggin' fool

Another morning I woke up, another day down. I have a couple of things I would like to talk about tonight, a couple of things to get off of my chest.
I'm feeling pretty good now and I'm getting bored at home. I think I'm ready to go back to work. I was sitting on the couch "massaging" my incision like my surgeon instructed me to do and flicking through the channels looking for something that was half way worth my time to watch. I settled on a show that I started watching the other night, but for one reason or another the channel got changed. Anyways the show is called "The World of Jenks" on MTV. The guy Jenks is following the lives of 3 people's but the one person this woman who is I would say 25 maybe? Is what struck me. She is an aspiring fashion designer in San Francisco she was diagnosed with swings sarcoma which is an aggressive none cancer and had to endure 8 months of intense chemotherapy, she blogged and documented everything. Six months later she was diagnosed with thyroid cancer. Seeing her pictures of her post op with the incision and the scar and hearing thyroid cancer I just broke down. Visually seeing someone else going through what you are going through just grabs the moats rawest emotions you have. I'm sure her thyroid cancer came from the intense radiation from the previous cancer. They did not say what type of thyroid cancer she had though, at the end of the episode she went for a 6 month check up which she does every 6 months, a pet scan every 6 months to make sure she is cancer free and.... They think they found a little spot of thyroid cancer on her lung. But it's so small they can't biopsy it they are just going to sit and wait on it. So of course I cried some more. Shit! What if that is my journey? What if this cough is cancer? I have thought about that woman all day, considering that show was taped already I wonder how she is doing today, this day, this very moment. I hope she beats thyroid cancer. That is a show I will be following.
Secondly my sweet innocent little daughters. I love them so dearly. My little 2 year old today playing with her older sister said she had to go to the hospital because she had a boo-boo right "here" and pointed to her neck. Right where mommy's boo-boo is. Their sweet little faces are what keep me going and what put the fight in me every day. They will never know that they are my Heroes. Now excuse me while I massage my incision for the evening.

I'm bringing sexy back

Well Frankenneck decided to venture out today.
Today was my husband's first day back to work so it was my first day on my own. First thing on the agenda is get the kids off to school. Joey is almost 13 so the biggest part with him is making sure he is up on time. Now Audrey being on the verge of 4, in just a couple of weeks, which reminds me... I have a birthday party I really need to start planning. Geeze . Anyways Audrey takes after her dad and does not want to get up for anything( why I put her in the am preschool class, I won't make that mistake next year.) get her and her younger sister up and dressed and out the door to be at school at 9. We did it minus a book bag, which is still missing somewhere in this house.
Audrey goes to school from 9 to 11. So I think I'll head to Walmart, we have no food in the house and I seriously haven't cooked a damn thing in the past week. I can do a grocery shop in under 2 hours no problem and I got an awesome parking spot, so here I go with a 2 year old to stock my shelves. I hate Walmart. I get the I wants, I needs and then I'm still adjusting to going out into the public with all the stares. I'm not ashamed of my scar, and it doesn't make me feel bad if someone looks at me over it, and I would even tell my story if someone asked me how I got it. I totally get it looks like my head about fell off. Lol it is what it is and I'm not going to hide my scar. I by no means consider myself "disfigured".
I spoke to someone today who is going down the same journey I am. Although she does not definitively know if she has cancer yet but she had a complete thyroidectomy 2 days ago, a week after mine due to the high likelihood of it being cancer, and she told me that I was an inspiration to her and that made me realize this is my calling. Cancer is my calling. I didn't ask for this, but God gave me this path and I'm going to do something positive with it! I'm not exactly sure what yet, but it will be great I promise. I've been given another chance at life. I have a disease that kills so many but in my case, I can be cured. I DO NOT take that for granted.
Even though it was cold out today the sun did shine, and it was beautiful and it felt wonderful. Every time I get to feel the sunshine on my skin I feel blessed. Goodnight

Bummer... That's all I can say

Another day at UPMC down, this one was a half fail though. My grandmother volunteered to watch my children bless her heart. She is in her early 70s but is in better shape than a lot of people in their 50s.
We had a snow storm come through last night so there was a two hour delay for the oldest of the 3, after we dropped my youngest 2 off at my grams it was time to once again make the trek to Pittsburgh, a trek I am starting to get familiar with, in case I ever I have to drive my self. We were running late so we're hailing ass in my mini van trying to make up some time. I've got two appointments today and I don't want to be late!
We pull into Pittsburgh at 10:15, my appointment is for 10:30 in the Faulk building, the Faulk building I keep telling my husband. The first place I ever saw this surgeon. Well what does he do? Takes me to the Montefiore building where I had my surgery. Faulk I said fall damnit! Now UPMC has like I don't even know how many buildings that are all intertwined or linked by bridges so we had to go through Montefiore, then Presbyterian to finally get to Faulk. I was only about 15 minutes late no big deal.
I get to Faulk floor 6, suite b to meet my surgeons. Everything is going great, no numbness or tingling in my lips or fingertips so my parathyroids must be okay! Yahoo! Which means I can stop taking the tums, they didn't seem too concerned about the tingling I get in my face from time to time so I guess neither am I.
Now is the time for these steri-strips to finally come off. Hopefully my neck won't feel as tight. Now those bitches hurt!!! Geeze, and he was not that gentle lol but my incision looks really good, big but good. Now time for pathology... My left lobe had a 7.2cm cancerous mass and 7 out of the 12 lymph nodes they removed contained cancer. Talk about a punch in the gut. This means I have stage II thyroid cancer, this also means that there is a chance there is still cancer in my body and I have to do radiation. My regular endo dr Hodak will be overseeing my radiation and I was also supposed to see him today and get another ultrasound on my neck, probably to look for more suspicious lymph nodes, but they cancelled because their computers were down so I'm still waiting for a phone call back for a new appointment.
I'm trying not to be bummed about the results of today's visit, but it's hard. The doctor said even though my cancer was large my prognosis is still very good because of my age. I just have to keep reminding myself that. It just might be a longer road to get there, including another surgery.
I realized today that this is my path to travel and no it's not going to be easy but this is my path and it will be the path of a survivor, who will bring awareness and show cancer does not discriminate. My name is Ali and I have thyroid cancer but I will not let it beat me, I'm upset today and it was not the news I wanted to hear but somehow I will turn it into a positive. Tonight I'm going to cuddle my babies and so should everyone else. Goodnight

I kicked today's ass!

Here we are almost one whole week post op and I'm finally starting to feel, dare I say, normal! Aside from the tingling I have in my face sometimes that I'm still not sure if its due to low calcium or maybe some nerve damage and just getting down right tired very easy, I feel pretty good. I'm excited to get back to a normal life. I'm starting to get bored at home.

Wednesday I go for my follow up with my surgeon and they will finally take these steri-strips off, which I'm glad. I will finally get a good look at this scar and without all those steri-strips on my neck maybe it won't make it so obvious where everyone stares at me all the time. I will also be meeting with my endocrinologist and he will be doing a repeat ultrasound on my neck. Now I'm not exactly sure why, my pre op ultrasound was so compromised by the size of my left lobe it made the study almost impossible, they actually had to do a cat scan instead to clear me for surgery. I didn't realize my tumor was this large, I never had any symptoms.

On a side note my celiac symptoms have not gone away. A few people mentioned oh maybe you won't have celiac disease anymore once your thyroid is removed, suggesting the cancer had something to do with it since there is studies out there that say celiacs and thyroid disorders go hand in hand. Well so far gluten still bugs me so in the words of Maury that was a lie.

I have a busy day planned for tomorrow, preschool for Audrey, house cleaning, grocery shopping, ya know normal things. Getting my groove back :) goodnight!

Is this menopause?

Post op day, what is this? 4 yes... Day 4. I'm slowly starting to feel better. Nowhere near normal and sure as hell nowhere near how I felt before surgery ( now that's both good and bad.) I actually had a really good day yesterday I just wore myself out too much to blog last night.

Jimmy didn't want to stay in the house yesterday so we went out gallivanting. That alone wore me out  so I ended up coming home to take a nap, when I woke up my arms and hands were all cramped upped so I had to take an extra dose of tums ultra. I'm getting so sick of eating those damn things. I wish they didn't have to be so damn hard to chew.

Today I woke up feeling pretty fantastic, I cleaned a little but I'm still so weak in my arms. I can't even open a damn jar of pickles what the heck!  Then I started feeling like shit, light headed and dizzy, burning up hot, then freezing cold, plus this tingling in my whole face that I have off and on, and it's not the tingling in your lips when your calcium is low, it's more around my eyes and cheeks, and to top it off. I'm on the pill ok. I take it every day at the same time and I have for some reason started my period so I am a major bitch!  I think the thyroidectomy itself puts you through emotional changes, I'm going to freaking kill someone soon. Lol this is not a smooth transition. We had a lot of visitors today so maybe it was just the stress of the day, I don't know. One day at a time I guess. Tomorrow, our plan is to go to church. So I'm going to try to do my hair, we will see how that goes with limited movement in my neck with this giant incision (5 inch) and some muscle removed. I don't want to do anything fancy just straighten it. Maybe I could talk my husband into doing it? It's crazy how you take everyday things like that for granted. I learning to not take things for granted anymore. Well I'm going to do some neck stretches and then go to sleep, up bright and early to take my synthroid in the morning! Night all