Friday, October 19, 2012

Learning to live with cancer

As expected, I had to call Dr. Jerk in the afternoon. He actually picked up the phone! That is a first for a medical doctor! The short of it was that he said that Dr. F (my endocrinologist) and Dr. Tuttle from MSK conferred and said at this point we are going to just monitor with another Ultrasound in 3 months looking for changes. I still need to speak with Dr. F and go over this plan with her. I am left with some unanswered questions that Dr. Jerk couldn't answer.

My concerns:
Despite surgery and RAI, there is now cancer in my neck. Was it there and non-responsive to RAI, or did it just start to spread again.

I take synthroid and cytomel everyday, which essentially is supposed to act like a daily dose of chemotherapy, to keep my TSH as suppressed as it can be. And it is suppressed to 0.006 at last check. So if I am so suppressed, why is this cancer showing up now.

Would another round of RAI be effective?

When do we decide to do the surgery, with 3 lymph nodes affected, 5? Is there a magic number? Do we wait for it to go to the right side of the neck? or what if it goes to the lungs or elsewhere?

Am I going to regret 'just monitoring' in 10 years if it is spread elsewhere? I would rather be proactive, not reactive.

Dr. Jerk did not have numbers for me - I need statistics and facts. I need to read journals that say that 10,000 people aged 43 who had metastasis in an unlikely place went on to live to 100 years old. I asked him what Dr. Tuttle based his recommendation on and his answer was experience. I get 'experience'. I have been practicing veterinary medicine for 17 years and have 'experience'. I just want some numbers to back up his experience, especially since I don't know him at all. There have to be research papers, I just can't find them.

Dr. Jerk said that if I develop more lymph nodes that look abnormal, I will see him again to do the biopsy with the TG washout test. OK, fine, but if we are not going to do anything then WHY? And again, when will we do something? What has to change?

I also question why did Dr. Jerk need to confer with Dr. Tuttle and Dr. F. I get the impression that he deals with first time thyroid cancer patients for the most part, doing primarily total thyroidectomies and not necessarily dealing with advanced thyroid cancers.

I would like to go meet with Dr. Tuttle at MSK and speak to him in person, or at least someone in his group. There are two clinical trials at MSK that I may fit the criteria for and I want more information.
http://www.mskcc.org/cancer-care/adult/thyroid/clinical-trials/09-048
http://www.mskcc.org/cancer-care/adult/thyroid/clinical-trials/11-115

I am OK with seeing what happens in the next 3 months with the ultrasound. I am not OK with not having a better plan other than just learn to live with cancer inside your body. I think cancer is too unpredictable, even if it is a 'good' cancer. Carcinoma is still carcinoma and we know it has already metastasized. I want more opinions and am going to pursue other options.

The wheels will start turning on new appointments in the next few days. I will continue to research and try to answer some of the questions I have. I will be my biggest advocate! No one has as much of a stake in my life as I do!


Tuesday, October 16, 2012

The night before....

I would be lying if I told you that I haven't thought about what the doctor said last week. I am supposed to hear from Dr. Jerk tomorrow at some point in the morning and if I don't, I am supposed to call. I am already expecting that I will have to call. I also plan to leave my cell phone ring ON at work - I think this is a pretty important phone call.
I have done some research and whether or not to do surgery is controversial at best. There are things that need to be considered:
FACT:  When I had my original thyroidectomy/central dissection there were 9/13 positive lymph nodes. It had already metastasized. Damn cancer. But remember, this is the 'good' cancer to have - ugh, I hate that expression. As IF there is a GOOD cancer!! HAHA!
FACT: I am 43 years old. That is still young even for this cancer.( I was diagnosed at 40 years old with a 1 year old baby.)
FACT: I had a normal nuclear scan in January.
FACT: I had a normal Ultrasound in summer of last year. That means that these lymph nodes have changed enough to see a difference on ultrasound.
FACT: It may just be a matter of time before the surgery HAS to be done, so WHEN it is done will need to be determined.
FACT: If I do have the surgery, I WILL hire a plastic surgeon so I will hopefully not scar as much as my original surgery.

I guess we will see what the 3 doctors come up with. More tomorrow!
Fingers crossed...

Tuesday, October 9, 2012

Isn't it Ironic?

How ironic is it that the day I sign up for my first 1/2 ironman distance triathlon, I find out that my cancer is back. I went to Dr. Jerk today for a 3:00 appointment. Mind you, I called yesterday afternoon and this morning to confirm that all my test results were in and was told they were. I had Adventurist #3 with me because he also had a doctor's appointment.

I did not speak to the doctor until after 4:00. He tells me that the cytology and flow cytometry are both negative! Yeah! So far, so good. But the rest of the results are not there. Mad doctor leaves the room and has the receptionist on the phone trying to track them down. He goes in with another new thryoid cancer patient to set up her first surgery.

Now it is 5:00. Still no answers, just a lot of phone calls with a new lab worker who doesn't know how to work a computer. We find out the test is not run in the hospital, it is run in Iowa. They call Iowa. They have results but still haven't sent them out. They finally send them over but only one page transmits. 5:15 - after telling them my cell phone number for the doctor to call  me tomorrow.

Game changer. It is positive. He thinks. He can't reach the lab to discuss normal vs abnormal levels because they are in a meeting. But he thinks its positive. He says that there is not supposed to be ANY thyrogen in the lymph node. Ok, are you sure? Then he tells me that Dr. Genius of Thyroid Cancer is coming to speak at a conference next Tuesday night and he wants to discuss my case with him. REALLY? Why? Why am I so special that we need to consult him? He doesn't think I will need surgery....yet. But when? If? Do I? 

So I am left with two things. 1.He is talking to Dr. Genius next Tuesday night and I should hear from Dr. Jerk (who turned out not too bad today after I waited nearly 3 hours) on Wednesday. 2. He is having the cytologists re-read the initial cytology now that we know there is cancer in it. A little backwards, isn't it? I love human medicine.
Choices beyond next week - surgery with 2 major unsightly incisions or monitor every 3 to 6 months.

Let's see what the phone call next week brings.....Oy.

Ironman Eagleman 70.3

IT IS OFFICIAL!!! I am signed up for my first half iron distance....
The emotions I feel right now.....
EXCITED!!!
Crazy
Nervous
Crazy
Scared
Crazy
Can I do this??
Glowing
Quivering
Heart Throbbing
Overwhelmed
Crazy
Bonkers
Delirious
Unsure
Unglued
Afraid
Irresponsible
Nutty
Apprehensive
CRAZY!!!!!





Monday, October 8, 2012

The glass is half full!

This video is one of the best triathlon videos I have seen and one of the few about cancer survivors! I love the Danskin series because they always have a cancer survivor wave at their races - and I always participate. I really think I am going to do this triathlon next year - the Rev3 Half Full Triathlon, because you always have to see the glass as half full!
What a great video! Watch it and let me know what you think! Just copy and paste this link - I can not, for the life of me, get this linked in!
http://vimeo.com/50963563


Friday, October 5, 2012

2013 Plan - I have a plan??

I can't seem to stop thinking about next year. Really? It is just October and I need a plan for next summer already? Apparently I do. The triathlon that I have been stalking is going to open registration on October 9th. Seems ironic as that is the same day I will find out if the cancer in my neck has returned. Registration opens at 9am. Appointment with Dr. Jerk is at 3 pm. Take a gamble or not.....that is the question.

Dr. Jerk earned his title after I met him the first time. I waited my obligatory 90 minutes and finally got the Dr. in the room. First question out of his mouth - who did your surgery and why didn't you go back to him?? Awesome, thanks for having me here and welcoming me with open arms. Believe me, if Dr. Stanley did this procedure that I was told I 'need' to have done and you weren't the only doctor in NJ that did it, I would NOT be sitting here with you. Then Dr. Jerk answers his phone - ugh, how rude. Looks at my US report and agrees the next step is to do the thyroglobulin washout  and sends me out the door. I ask him, did you want to feel me neck? Oh ok...I can feel them. We need to do the test. Well, thank you for the 3 minutes of your time....hence, Dr. Jerk.

Back to triathlon....so the big plan for next year is to do a Half Ironman Distance triathlon. I have researched a couple and I think I have decided on Eagleman in Maryland. It is supposed to be flat, which is what I want since there is no hill in NJ  to be found, at least where I live. June 2nd, 2013. That is going to be the date stuck in my head for the next 8 1/2 months.

I like the idea of an earlier season triathlon. For some reason, in my crazy head, I feel like triathlon should end when school starts in September. That means after Danskin Sandy Hook in early September. I can keep my motivation until then, but after that I turn to more of a run focused training schedule. I look at the triathlons that are going on now and truly have no desire to do them.

And speaking of desire, I haven't been in a pool for almost 1 month. I can not get motivated to do it....anyone have any advice? I am trying not to stress about it, but if I am not going to swim, I should freeze my gym membership and take the pressure off.

If I do an early season triathlon and fill in with some smaller ones for the rest of the summer, what is next falls big adventure....will discuss next blog.

Today was supposed to be a rest day - did 25 minutes of core with a smattering of legs and arms. Still worked up a sweat in short about of time.

Tuesday, October 2, 2012

Let's start at the very beginning, a very good place to start!

Let's see....where to start. How about an explanation of the title of the blog.

1. Mom - to 4 wonderful adventurists. What's an adventurist you ask - by definition, it is the involvement in risky enterprises without regard to proper procedures and possible consequences. That adequately describes the way the four of them interact with one another!
Adventurist #1 - a new to being 13 yo daughter (yikes) who loves piano
Adventurist #2 - an 11 year old daughter who loves Tae Kwon Do - 2nd degree black belt - watch out!
Adventurist #3 - 8 year old son who keeps us challenged! Loves technology!
Adventurist #4 - 4 year old daughter who loves to do everything her older siblings do and is to young to know she can't

2. Vet - I am a Diplomat of the American College of Veterinary Medicine (Small Animal) - all that means is that I went to school for 4 years after vet school to become 'board certified'. I LOVE being a vet and working at my hospital with my 'folks' (Adventurist #4's way of referring to the employees). I see lots of cool things, nice people and a smattering of not so nice too.....those tales will unravel here from time to time...

3. Survivor - April 9, 2010 with a 1 year old on my lap I heard the words, you have thyroid cancer. And the next sentence the nurse told me over the phone was that it was a good cancer to have. Ummmmmm.....I didn't want any cancer. Turned out to be metastatic to the local lymph nodes too....oh goodie - its all good, right! Well, with the right attitude, it IS all good! What are the alternatives....to wait to die - not my plan at all!

4. Swim - I am NOT a natural swimmer nor a good swimmer...let's leave it at that for the moment. Oh, and I have a really hard time getting into water, especially if it is cold. Maybe that's why I am not a good swimmer??

5. Bike - I LOVE to bike - I love the freedom when I am outside riding with the breeze in my face, sunglasses on and the road pushing me ahead. I have a great black bike with purple accents - that's my color, purple. You can see how technical I am. Biggest biking problem -  after two years of consistent riding, I have terrible seat issues....ouch.

6. Run - I LOVE LOVE LOVE to run! Triple the freedom of biking! And you only need a pair of sneakers to make it happen! My favorite time to run is at sunrise, or at sunset, or in the black of night. I  have been called a ninjarunner before - could have something to do with the fact that I have a black belt in TKD!

So this blog is going to be about being a mom, being a vet, and being a survivor, and being a triathlete! It will be about how I effectively use 24 hours a day to make it all happen - although 3-4 more hours in a day would be fabuloso!!

Plans for 2013??? To be revealed very soon! Stay tuned!