This is a guest post done by my sister Ash. She is starting her own "blogging journey" and will be sharing here as well as on her own personal Facebook page. I lived this as a sister- and it was terrifying. I am eager to read this journey from her point of view.
To link directly to Ash's blog click HERE
Blog- Scarred for Life
Entry 5- Damn you thyroid of steel
Sadly at this point my thyroid of steel became a joke at the doctors office...But honestly if I didn't laugh.. I wanted to cry....We celebrated Morgan's first birthday.... then the anniversary of my surgery came and went......we got through the holidays.... then it was time to gear up for round 3....Off my meds I went....this time it really felt like no big deal...and it was an even smaller dose...
The girls loved staying with my parents...so that part was not a problem...the problem this time was, my parents lived in mass...we lived in maine...and John was going away snowmobiling for a few days..exactly the same time I'd be radio active....I didn't want to stay home alone and I couldn't stay at my parents because of the kids....soooo I went on an ALL guys snowmobile trip with John....what an experience that turned out to be....I was the running joke the entire time...Hey Ash are you glowing?? Hey Ash can you come stand next to my food and heat it up??? Hey John when you kiss her does she spark...hahaha... very funny guys!!
Like the other times the first day or so I was okay..but by the third day I was miserable...I sucked it up and did what I had to do so John still enjoyed his guys trip....the guys took good care of me and knew what I was going through...they didn't care if I wanted to pull over for a break...or go to bed early....
we still laugh about me tagging along it to this day....
I don't remember going back for another scan....I don't remember much about the meds after that last treatment..I remember being frustrated about how I still felt..now 25 yrs old...I felt fat...depressed...worn down...I felt like I was someone I wasn't supposed to be....I actually remember just saying fuck it and not going back to the endocrinologist for a while....I'm not sure if it was because I didn't want to get any more bad news..or if I just needed a break....
When I moved to New Hampshire.... I found an endocrinologist in Hampton who was pretty good and much closer for blood work...but this guy was more into the diabetes side of the endocrine system so he didn't really do much for me and was constantly changing my doses...and every time something about my dose changed...I changed.....weight gain/ weight loss..anxiety..depression..fatigue..hair loss..etc...
Lucky for me this endocrinologist moved his practice and he was replaced by a lady..I still see her and really like her a lot...she's awesome and takes me very seriously and most importantly listens to what I have to say...she is also very thorough ...she has kept up with my blood work and ultra sounds...I have my blood drawn every 7 weeks and she calls me and lets me know the results right away...
During an appointment last May....she was saying how surprised she was that I can tolerate the amount of medication I take....so she wanted me to give her the run down on when I take my meds....When do you take your medication??... In the morning....what do you take it with??.. My coffee...what do you put in your coffee??...Cream...did you know cream has calcium in it and that will block your medication???... Nope I didn't....how long have you been taking your meds this way??
10 yrs!!!
So I had been taking my meds with something that blocked the absorption and depending on how much coffee I drank each morning and how much cream I dumped in... it was always a crap shoot on the amount of medication my body was getting!!!!
All these years and they never asked and I never knew how in the world my levels where constantly off....So let's fix this...sounds easy right??? WRONG!!!
Basically they calculate your meds on your weight...so I should be taking roughly 108mcg (micrograms) per day...I have been taking almost 200mcg daily....so since May I have changed my schedule....I now take my meds at night....now every time I have my blood drawn my levels are through the roof..because I don't have anything blocking it anymore...she has been changing the dose very slowly...taking a half of tab away at a time... I wait 7 weeks on the new dose and then they check...it's been long and stressful and every blood draw I'm excited to hear the results...but so far every time has been another medication change and another 7 long weeks of feeling like total shit...
The last medication change was the worst..I called and begged to be seen...I explained how awful I felt...They were sorry but I'd have to wait out the 7 weeks until it leveled out and they could check the bloodwork...I swear it was the longest 7 weeks I've had in a long time....It's harder now to hide it....I get moody and tired...I have a hard time focusing on simple things like helping my kids with homework... I swear sometimes I feel like I'm on another planet...
Finally it was time for my bloodwork...she also called and said she would like to schedule an ultrasound.....ok sure...
Two weeks ago I had my bloodwork and ultrasound... going to the ultrasound I felt uneasy...I can't explain why...I just did...They took me right in and I laid down...having them press on your neck with that stupid thing sucks...It's hard not to swallow...we went over my history and I noticed she was spending more time and taking more pictures of a certain spot...she called in another person and the mood changed...I fought back the tears and tried to breath...I'm reading into this I know it...it was over and I remember her saying that they would have the radiologist read this right away and my doctor would have the results by the morning....results of what?? wasn't this just a routine ultra sound??... My husband told me to relax...my friends said don't worry....I never got a call so I figured no news was good news....
It's so easy for people to simply say "don't worry...things will be fine"...after they tell you these words and even though they really do mean it...their life goes on...they are not waiting...wondering....worrying I will not be relieved until I hear there is nothing in there....I'm not saying that waiting for results aren't hard on everyone....but I think the anticipation of results is a bit more intense for someone who's had cancer.....every time I'm sick for a long time...every pain that doesn't go away...every weird unexplained symptom... I'm not gonna lie....I think oh shit it's come back to finish it's job...it's come back to get me...I don't know if I'll ever be worry free of this...ever...
In 28 days the little person that was growing in my belly when that lump was found will be 11...it's been almost 11 yrs!! Some days I look back and cannot believe it....some days it seems like yesterday....it was a crazy experience....that is for sure...and I wouldn't wish it on anyone...
The past 11 yrs haven't always revolved around this...it's something I've learned to deal with and live with everyday....I've been healthy and fortunate enough to travel with my husband and kids...we snowmobile in the winter and camp in the summer...After being a stay at home mom and doing daycare out of my home I recently went back to school and now work as an LNA...life is good!!
Last week I showed up for my appointment....First thing is step on the scale....I'd lost a few lbs...always a good thing in my book...the nurse rooms me and takes my blood pressure and asks how I am feeling....I tell her crappy and she writes down everything I say....finally my adorable little doctor comes in....she sits and says ...well what do you think I'm going to tell you??... I say..my meds have got to be off I feel like crap ....she tells me I'm correct.....go figure....so we decrease once again and wait...
Moving on...she brings up the ultra sound....I can feel my eyes start to water and burn..deep breaths...and then she says it...They found malignant looking lymph nodes on the same side they found my tumor.....she went on to say that the cancer markers in my blood are non detectable and that is very positive...lymph nodes can looks weird for a number of reasons so there's no need to panic...we will have more blood work in 7 weeks and a follow up ultra sound in a few months...have a nice day...
I cried all the way home...I took some time off from work and changed my schedule a little bit...I'm trying not to let this worry take over...waiting sucks..medication sucks..blood work sucks...cancer sucks
I know a lot of people that have read this didn't know any of it....it's not something you just meet someone and share...Hi my name is Ash and I had cancer...no it's not like that...although I'm not bothered by my scar and don't mind talking about this...it's not a trophy..for me it's a painful reminder..
I've also had people that are very close to me ask themselves..where was I??..what the hell was I doing when you were going through this??...well I have asked myself the same things...why didn't I share more?? ..why didn't I ask for more help???...I think during tough times you go into survival mode..and I was probably doing just that...surviving..
I believe everything happens for a reason...I never did before until I got diagnosed with cancer...I don't think I got cancer for a reason.. I think I got pregnant for a reason...If I had never gotten pregnant..they may not have found the lump....maybe not until it was to late ...do I think I had the best cancer ever??...NO...but I do think it could have been a lot worse...
I believe I got my guardian angel early...her name is
Morgan
