Friday, December 16, 2011

Going "hypo"

For the past few months I've noticed I have an increase in pain, tingly hands and feet, severe exhaustion caused by my long bouts of insomnia among other strange little issues. For the past 6.5 weeks (since November 1st) I've been going hypothyroid to prepare for a whole body scan. I was unable to get Thyrogen as it is in shortage STILL, so my Dr's decided I could no longer wait for it and ordered me to go hypothyroid the old fashioned way.

For those of you wondering what it means to "go hypo" here's an explanation:


Everyone`s body requires thyroid hormone, a hormone taken in synthetic form once the thyroid has been surgically removed. Without this thyroid hormone, the body produces an increasing amount of thyroid stimulating hormone (TSH). An elevated TSH of at least 30 mIU/L is needed for the RAI treatment to be effective. To achieve this rise in TSH, we must stop taking our thyroid hormone replacement pills, or have our TSH stimulated by taking Thyrogen, a medication given by injection. Going hypothyroid by hormone withdrawal, involves stopping our synthetic T4  for many weeks prior to RAI-radiation treatment. During the time that T4 is stopped.  ‘Going hypo’ is a gradual process with the thyroid hormone changes occurring slowly over the weeks with out T4. The longer we are off of thyroid hormone T4, the more symptoms we experience and the worsen with each passing day.

When you go "hypo" these are the side effects you can anticipate.


  • Fatigue
  • Sluggishness
  • Increased sensitivity to cold
  • Constipation
  • Pale, dry skin
  • A puffy face
  • Hoarse voice
  • An elevated blood cholesterol level
  • Unexplained weight gain
  • Muscle aches, tenderness and stiffness
  • Pain, stiffness or swelling in your joints
  • Muscle weakness
  • Heavier than normal menstrual periods
  • Brittle fingernails and hair
  • Depression

The first week or two weren't bad actually but after that I began going down hill. The only benefit I found was that since I hadn't been sleeping in months, the exhaustion from being "hypo" changed that and I was sleeping better. I also already had some of these side effects prior for one reason or another but they worsened and I developed many others. So it has been a long couple of months and next week I go for the Radiation and a few days later the scan. I should know more by early January.

Hoping and praying it's not spread, but preparing myself for the worst just in case. I've always had bad news so I'm not about to let my hopes get up only to have them dashed by a Dr. dishing out bad news.



Monday, October 31, 2011

Fun way to spend Halloween


I have a busy day today I somehow wound up with my Appointment on Halloween. How unfair is that? At any rate I must go. I've been feeling rather unwell lately (more than normal). So I called them to discuss it. I can explain how I've been feeling and see if they think it's worrisome. I believe it is and I believe they need to find a way to let me go hypothyroid so I can be scanned. My Dr's prefer to hold off on going hypothyroid in hopes that Thyrogen will become available but it's been in shortage for so very long. My health concerns are serious enough that I am going to demand that they figure it out and stop waiting.

I constantly worry that the cancer has spread while we've sat here doing nothing but wait for Thyrogen. Frankly I'm tired of doing nothing!

Today all that ends and I'm going in there guns blazing.


Wednesday, September 14, 2011

Depression


For years I kept all my issues to myself. Always remaining tight lipped and bottled up. I talked with no one but my husband. One thing I have learned from having cancer is that it's ok to need help. Now more than ever I believe that knowing other people have walked your shoes and survived is very helpful. So many women have helped me though my struggles by sharing their stories with me. Whether it was Postpartum Depression/anxiety or cancer related. Every single person who has poured their heart out to me has helped me.

I suffer from depression and severe anxiety. 

Every. Single. Day. 

It all started after my Daughter "Roo" was born. In February 2008 the nurse called to come for a visit. "Sure thing! Come on over!" My husband was still home with me, having taken a month off to help me after a very difficult c-section. I remember greeting the nurse and welcoming her into my immaculate home. I had stayed up ALL night cleaning and making sure things were acceptable for her scrutiny. I was exhausted, and felt miserable but I knew it would pass so I plastered a big dreamy "I-love-my-life smile onto my heavily made up face. She sat with us, asking questions about the baby and her routines, and how my delivery was along with how I was healing. I spoke honestly about that stuff but everything else was a lie. When she asked if I felt down, I said no. When she asked if I was sleeping I said yes. When she asked if I had any unusual thoughts or feelings I said no. Then she moved to my husband and explained to him, not to me, what PPD was and what to look for. In other words she gave me the cliff notes version of what to keep hidden from everyone so they wouldn't know something was very wrong with me. Then she smiled, said everything looks wonderful, wished us well with our newly expanded family and went on her way leaving little more than a card behind. 

Months went by and I remembered every little detail she told my husband to watch for, and those were the things I stifled. If I needed to cry I went for a shower so I could cry without glaring eyes. If I was feeling anxious over unfinished housework I would lie in bed breathing slowly and quietly until I knew the rest of the house was asleep then I would get back up and take care of it keeping a watchful eye on the time so I could make sure to get back into bed no less that 30 minutes before the alarm was to go off. In my heart I knew a good mom can get all the housework laundry etc done AND be an involved and active parent who plays with their child, goes for walks, and attends mommy & baby classes and regular playgroup dates. So that's what I did. I played perfect mom during the day, and stayed up at night doing the chores. I rarely slept and that was ok, because I was honestly scared that "they" would take my kids away if I wasn't doing everything right. 

Eventually I began having a hard time holding it all together. I can remember standing at the door, baby upstairs screaming and I was begging my husband to please just stay home. He brushed me off saying he needed to make money and couldn't stay home. He walked out the door and I crumpled to the floor sobbing. I sat there for hours before I realized that if I left the baby crying any longer the neighbors would call "someone" and "they" would take her away from me. 

It got so bad that after living like this and hiding what was wrong for 8 months I had an emotional break. I totally lost it. After all was said and done I took to my local mommies forum and wrote this anonymously:

Hello- I have been feeling very out of sorts lately and I don't know what to do.
I am a wife and mom 2 two kids. THey are the bright spot in an otherwise bleak day. My infant cries non stop and I can't even step into the kitchen to get a drink without ear piercing sobs. I cuddle my baby and spend lots of time playing and singing etc but by the time DH gets home I really need a break from it and I ask nicely for a few minutes to myself to get dinner made in peace. My problem is that until recently I have been keeping up this front and faking that I am great when the truth is I am far from it. I am stressed out about so many things that I don't know what the biggest issue is anymore.
My home life is horrible because of outside contributing issues from other family members. (My husband and kids are wonderful and I love them so much!)
Money is tight and I am scared of not making my payments.
I never get a good nights sleep and I am constantly do everything while I get no offers of help. Example: last week I broke down and asked DH if he could bathe the baby and he asked why I hadn't done it earlier that day. I was super busy with groceries and the baby and dinner and housework so I thought it could wait until DH was home. I begged him to just give me a break. I didn't have the energy to di ti myself and I wouldn't have enough time in the morning to do it. He said no problem he'd take care of it. I went out for a walk with a friend for 1 hour (stopped at the store for lunch things at DH's request while walking). When I got back I watched tv for a bit then headed to bed. I asked Dh ihow her bath was, he said he didn't get to it. I was so angry I went to bed and quietly cried out of hurt and frustration.
A week of the same thing goes by, yesterday the baby refused to eat anything all day this led to a trip to the clinic to be sure all is fine. I am in there for over 2 hours. The baby screamed the whole time. I was litterally at my witts end. When DH got home from work I broke down in tears and begged him to help me. I explained that I feel like I am drowning and no one is there to help me. I even said that if he didn't start helping me more then he would ge tthe opportunity to see what its like to do it all himself, because I was ready to take a knife to my wrist. GASP!!! yes I said it, I really didn't mean it but I needed him to get it. I don't know whay I said it but out it flew.  Then all of the sudden I couldn't breathe and I was having extreme pain in my chest this went on for about 20 minutes, I was close to going to the hospital because I thought I was having a heart attack. 
I am normally very composed and "together". But the facade is begining to crack.
I booked an apointment with my dr. but she can't seem me for a couple of weeks. I know most of my problems are common but I was always able to deal with them, but now they seems so much worse and harder for me to cope with.
I just don't know what to do to get back to the old me.

I had had my first major panic attack. I truly thought I was dying and that the world was closing in on me. I am very blessed to have had an amazing woman reach out to me to suggest that it could be PPD, and either way she would love for me to come to a meeting that she was running for moms struggling after having a baby. I went twice, sat in my car scared to face and admit what I had known all along. I was sick, severely broken. I never even got out of my car those first 2 times. I drove straight back home. The 3rd time I got to the door and was about to turn back for my car when the door pulled open, and a woman was standing there. She knew right away who I was an hugged me long and hard. I just stayed in her arms crying for what seemed like forever. It was instantly comfortable. I didn't speak much at the first meeting but I heard storied from the other women, some were like me and others were very different. But we all had the same thing in common, something changed in us after our child was born. I attended those meeting for a very long time. So long that I felt funny going because my DD was over a year old. They helped me through Dr's appointments, medication change after medication change and all the does increases that went along with them. They were my strength when I had none of my own.

Eventually I found the medication that made me feel closest to my old self and was doing much better for about 6 weeks. Then in June 2009 I was diagnosed with Thyroid Cancer, sending me back into a spiraling mess.

My life has never been the same. What has changed was the diagnosis, after 2 years with the PPD/PPA label, my diagnosis was changed to generalized depression and severe anxiety. Along with that came visits to a therapist and psychiatrist to help me to worth through old unresolved issues, and to learn my triggers and some coping mechanisms, and I'm on the edge of a new diagnosis. I still struggle, I still feel like much of my life is under a blanket of fog but thanks to one person reaching out to me way back then I was able to connect with other people suffering like I was and the world seems a little smaller, and I felt a little bit less alone in my struggles.

In light of the rash of suicides I want to urge you to be proactive with your friends and family and even people you may not know well. Many people suffer in silence, walking around with a big smile and lots of happy words when they are deeply hurting. If something seems wrong it probably is. Please take a moment and offer your help. YOU could be the one voice that saves a life in crisis.

Tuesday, September 6, 2011

Thyroid Cancer Awareness Month



September is 
Thyroid Cancer Awareness
month.

It is a cause that is very close to my heart because I have been battling it since I was diagnosed in June 2009. So rather than tell you about my cancer (you can read it here) I want to dedicate this post to awareness. I want YOU to know what you need to do to be proactive. 


I know what you're saying... "But I'm already busy buying daffodils, planning a 'stache for Movember, Hosting a Girls Night In, Running for the Cure, and feeling my boobies, and the list goes on." 


I completely agree! With so many people being diagnosed with so many kinds of Cancer it's really hard to keep on top of all the initiatives to keep us safe. Cancer awareness can be a full time job, but I promise you this; as someone who has had it for over two years, spending time on awareness and self checks is NOTHING compared to how much of your life you can lose if you yourself are diagnosed. Sadly if you ignore your health and choose not to play a  proactive role in your well being the only alternative is playing a reactive role, and dealing with it when it might be too late.


Beause my story is one of Thyroid Cancer I am urging you to please do this for me:


Check Your Neck!

There are many ways to do this. One is a self exam. Easily done in 5 minutes. FIVE minutes!!! There is no excuse please do it. Right now. For me. If something's not quite right you'll know.

The second is to schedule an appointment with your Dr and request that he or she take a few minutes at your appointment to check your neck for you.

If you are in the Greater Toronto Area, I urge you to come down with your family to Thyroid Cancer Canada's event "Neck Check". They will have Drs. Irving Rosen and Raymond Ng on hand to do a check of your neck and answer your questions. It's happening THIS Saturday at Sherway Gardens Mall between 9:30am-6:00pm. Click here to register.

If you are in Calgary AB there's an event for you too!


Wanted to let you know about our event in Calgary AB Canada:
Neck Check Run/Walk
for Thyroid Cancer Awareness

Where: Calgary, AB
Date: Saturday, September 24, 2011
Time: 9:00 am
To register go to: http://www.events.runningroom.com/site/?raceId=7099


I also have a favour to ask; please take a moment to share this, tweet this, like it, whatever you need to do to get the word out there. Everyone needs to know!


Friday, August 19, 2011

Cancer Drug-Thyrogen in continued shortage

It's been a while since I updated on the Thyrogen shortage happening in Canada. I am including all the letters so that new readers can see the situation from beginning to the current announcement.

I am now at a point that I will be making an appointment to speak to my Dr's about allowing me to go "hypo" under close medical observation. Hypo is not a safe option for me because I have a heart condition, however sitting here with cancer still in my body for months and months of doing nothing is (in my opinion) also not a safe option. I stress constantly that the cancer is growing and that I'll get terminal before Thyrogen is available. Now I know that seems dramatic, and scary, but it's where my mind goes and I can't help having these kinds of fears. I just want to move forward in my treatment and at least feel like we're doing something, anything to keep moving in the right direction.

I am really disgusted that this shortage is continuing this long. Does anyone even care that people like me are sitting here with CANCER doing NOTHING to get better? They need to get their shit together and get this shortage solved. AS it sits now We could be waiting until spring of 2012. If my hunch is correct, we'll get  ANOTHER shortage letter at that time.

Now for the letters the first is Dated Nov 2010 with the most recent being July 2011. For the current status please skip right to the last letter.








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