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.

So excited to share!

I have huge news! I am so excited I can hardly contain myself. Let me just get it over with:

"She's Connected" is an exclusive conference with Canada's 200 top digitally connected women, and brands who want to connect with them. Some of you may have heard of it and other are probably thinking "huh?". This conference is a really big deal to me. I have so much to learn from the amazing section of women I have been chosen with. I also have lots to share with them. This is not a conference you can easily buy your way into by purchasing a ticket. It is invite only, and I am humbled to have been grouped among women of this caliber. The speakers are amazing this year with my personal favorite being Celebrity Chef Christine Cushing she truly is "Fearless" in the kitchen. I could learn a thing or two from her. 

Ok, I could really go on and on about this, but suffice it to say; this conference is important, it's a huge event and I still can't believe I was selected!!

For more info on the conference click here: She's Connected

Now I have to figure out what I will wear! Anyone wanna help me come up with conference outfits for a plus size woman??

No more cancer

In the last post I expressed my health concerns and I am very fortunate to say that the tests came back conclusive. It's not a new cancer! It's still yucky and I'll have to decide which treatment to go with but I was diagnosed with a menstrual disorder called menorhagia/hypermenorrhea. Basically it's excessive and prolonged bleeding. Which is why it gets so bad that I went severely anemic and required hospitalization and a blood transfusion. 


So now what. I am given the choice of 3 things:
1.) Try an IUD to see if it regulates the bleeding- in many women it does.
2.) A uterine abalation
3.) A hysterectomy


After having gone through so much already; medically speaking I think I am leaning toward trying the IUD it's less invasive, but not guaranteed. The only sure thing is the hysterectomy and I'm not ready to deal with everything that comes along with that. Major surgery (again) followed by early menopause doesn't seem like my best bet right now, although it looks quite likely at some point if the IUD does work as well as we're hoping.


Now to find out if insurance will cover the cost of the IUD, theyre over $300 otherwise. 

Where I'm at

As you may have read in the last post I've been having some medical issues lately. To be specific I have bleeding for 2.5 months now. It began like every other period, only it didn't end when it should have, it just kept going and going, getting heavier and more brutal to the point I was hemorrhaging. The blood was thin, almost like water, and I was soaking through tampons in 20 minutes. I have had a terrible backache that just won't go away and had been hospitalized on Easter for a severely swollen left leg. Finally I went to my Dr. to describe all the issues, he sent me for tests. Luckily the bleeding had stopped by last Thursday, just in time for me to do the blood work. Monday I went for ultrasounds including a trans vaginal ultrasound. I was in the office, in pain, feeling uncomfortable and awkward but knowing it needed to be done. Monday after I got home I got the call that I needed to go in right away for the blood work results. I asked if it could wait until they received the ultrasound results. I didn't want to go for 2 separate appointments. She told me she would check with the Dr and call me back. When she did she was adamant that I must come in right away. So in I went, not knowing what to expect. AS I sat there the Dr told me that she hadn't yet received the ultrasound results but that the blood work revealed something very urgent. My Hemoglobin was dangerously low and likely even lower that they were on Thursday. I was told to take copies of the labs and head straight to the ER. ON the way out the office manger yelled for me to wait because my ultrasound had just come in and she would have the Dr review them and see me in a couple minutes. I was called back in 12 minutes later. She told me that several things were found. First they could see I had gall stones that were not yet bothersome but would likely require surgical removal at some point. Second, that I had some cysts and fibroids, ok, so far I am not worried. Then she dropped a massive bomb on me. My endometrial lining is grossly thickened. Which means one of two things. First possibility is Endometriosis. They find this a bit unlikely because it should have been noted when I was pregnant with Roo, but it was not, also I have none of the classic symptoms of Endometriosis, like the severe pain that goes along with it. The second , is uterine cancer. My symptoms coincide with this possibility so needless to say I am scared to death. I will have to have a biopsy to confirm, but all likelihood is that, at minimum I will require a full hysterectomy.

On the way out I was reminded to head straight to the ER.

 I did, and was pleased that things moved very quickly. They tested my hemoglobin and it had fortunately risen by 2 points. So they sent me home telling me that if the bleeding started again to come directly back. By the next morning it had started and was as bad as it was before. I set things in place to have someone watch my kids so I could head off to the ER. I slowly got worse and worse as the day went on. My hemoglobin had dropped by 4 point since 24 hours prior. They were very concerned and ordered a transfusion right away. I was given two units of blood and it took forever. It was cold and a bit painful. but my husband was with me holding my hand and my parents (long separated) were united in their concern for me. I saw the worry in my dad's eyes and the helplessness in my moms as she brushed the hair of my forehead and tried her best to comfort me.

We're all scared, but all I can do is wait until the biopsy is done. Then I'll begin making plans depending on the diagnosis.

That's where I'm at.

hiding out of fear

Well I know I've been kind of absent from everything, school, family, social media... The fact is I've been hiding. Trying to avoid crying or getting angry. For over 2 months now I've had some medical issues that when combined are looking like my cancer may have spread. It could be side effects from not having a thyroid and not having my meds regulated still after all this time. But my doctors are concerned, which makes me scared. So I was scheduled to have some very invasive tests done and they begin tomorrow.

I'm not sure why I do this. Just when I need people the most I pull away and hide. I wish I was better at asking for help, I wish I was better at letting people in when things are rough. I'm not good at these things.

Tomorrow I have a bunch of blood drawn so they can start looking at my Thyroglobulin (Tg) again. but the real facts will come after my tests on Monday. It's not pleasant and I wish I could avoid it but frankly uncomfortable tests last a short time, the discomfort you feel from having cancer is much worse so better to just get it over with. I've hated waiting to have the tests done but now at least I'll have answers.

Again it could be nothing but the feeling I have in my gut is just like the feeling I had in the beginning, right before I was officially diagnosed with cancer.


Sadly as I was looking at the calendar to mark Mondays appointments off I realized something. By the time I am getting the result it will be my 2 year anniversary since the day I was diagnosed. It was June 30th 2009. For some reason once I recognized that date was close last year, I fell into a rough patch of depression. I am scared that I am at the beginning of the same slide right now.

I spent a large part of the day crying today, my crying turned to rage. I know now that I am angry again.

Angry that I have cancer
Angry that not all that long ago I was told there was only a trace amount of cancer showing on my scan.
Angry that it has ruined a lot of parts of my life.
Angry that it nearly destroyed my marriage.
Angry that my treatment is on hold because the drug company fucked up and the drug I need has been on shortage for a very long time.
Angry that my cancer might have spread
Angry that I have to be scared for the rest of my life (even once I am cancer free)
Angry that I have had cancer for almost 2 years when many people with the same cancer are cleared in a much faster time.
Angry that I feel so angry, when I have been blessed with so much in my life.


I am so sick and tired of being scared. I just want my life back. It's my life!!!!!!!!!!
Is that really so much to ask and pray for?

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