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My Cancer Trip

Topic: My diagnosis
Updated August 17th, 2009, filed in Recurrent Thyroid Cancer

“Your case is… interesting.” This is the last thing you really want to hear a doctor say to you… ever. But especially not when “you’re case” involves 4 years of battling a type of cancer that is supposedly the “best” cancer to have, and the “easiest” to treat. It is a statement that ranks right up there with the radiologist who said, “Man, this is the biggest one I’ve ever seen,” in reference to the lump on my neck; or the doctor who couldn’t find the lymph node until I put his finger on it and he was like, “wow, yeah, there is a lymph node there.” I could really just create a blog dedicated solely to the idiotic things doctors tend to say. It’s also not an especially good phrase to say when the patient has been sitting around waiting for over two hours staring at all the diabetes literature, the diabetes tv channel, and diabetes magazines, and noting there being only one outdated thyroid cancer pamphlet. When the intern came in, he also started off by saying, “I’ve been reading through your file…” looks down at the 3 inch folder in front of him then turns to scroll through the computer version, “… it’s really complicated,”… stops, winces, he knows that’s the wrong thing to say… “its interesting.” I hold my tongue from retorting something along the lines of, “well I think its pretty interesting that you are like a 6’7” Asian kid. Lets get sticks and poke each other out of fascination."
This was my life in September, 2008, with things only getting more complicated since then. It has been about five since my ob/gyn felt my neck and said, “you know you have an enlarged thyroid, right?” At this point I was 21; I was all minding my own business, living my life, and working on plans to change the world via friendly takeover, when quite suddenly everything got flipped around.
I received two life-changing phone calls on February 16, 2005. The first was that I got into my first law school; I was going to be a lawyer someday. The second was a call from my first endocrinologist telling me that my biopsy came back suspicious; no explanation of what that meant, no use of the “c” word, it was just suspicious and I ought to go talk to a surgeon. My surgeon sat me down and started planning out the surgery, when she looked up, saw the look on my face and asked, “You did know it was cancer, right?” This was spring break, March, 2005; less than a week later I had a total thyroidectomy, along with lymph nodes removed. I believe it was 9 out of 13 lymph nodes were also cancerous. I did the full withdraw and low iodine diet starting the week of my graduation in May 2005. I watched my plans to join Americorps disappear without a trace, and suddenly had to jump right into law school, instead of deferring for a year, not because I wanted to, but rather because if I didn’t, I would lose my health insurance. I figured this was just a minor set back; I would get this easy cancer treated, and move on with my life. Naïve optimism.
During my surgery, a vocal nerve was nicked, paralyzing it; imagine if you can a lawyer who can’t raise their voice, or talk for more than about 5 minutes at a time. In January 2006, I had a lypo injection surgery on my vocal nerve so that I could have a real voice again. There’s still some problems, breathing is awkward, as I technically have half an airway; my one working vocal cord still gets worn out from time to time, but overall I manage.
In February or March, I was told that I had had recurrence. I started prepping for another large dose of I-131 during my last week of exams and had a neck dissection on the left side of my neck in May 2006. There’s no hiding a neck dissection scar; but the only people that seem to notice are children, I think it’s too big for anyone else to see. I did the full round of radiation in June. The next year, I appeared to be in the clear, and only had to do a scanning dose of radiation.
Things changed in the spring of 2008 w/ blood work, and a pet/ct that showed something was in my neck. Too small to do surgery on, so they decided to radioactive dosimetry. Then changed their minds at the last minute about giving me the maximum radiation I could have, out of fear that I may need it again, and instead pumped me w/ 222 mCi of I-131.
And that brings me back up to Fall 2008. “We don’t every want to do radiation on you again.” Music to a bitter angry cancer patient’s ears. “We don’t think its worth the risk to keep doing something that hasn’t worked.” Then comes logic and reason rushing down like a thousand raging waves. They haven’t even taken my blood and he’s already telling me that he doesn’t believe the last round of 222 mCi of radiation has had any effect. He’s telling me about how he has a plan, but he’s also telling me that I still have cancer. No he keeps reciting stupid key phrases like, you have recurrence but it seems more like this is persistent. I don’t even know if he realized right there that he just told me that I’ve never once in the past 4 years actually beat having cancer. Its one thing for it to keep coming back… but to have never won, not even one battle, when you thought you had… well now, that’s devastating. No matter how you gift wrap it— never do radiation again— HA… if only such a phrase could really carry with it the sort of optimism it implies.
All the radiation had had a handful of side-effects: swollen and dried up salivary glands, brain fog, hair loss, etc. Besides the normal ones, my tear-ducts had essentially dried up and collapsed, leaving me looking like I was in a constant state of tears. I had surgery in December 2008 to fix the problem.
Then, once again on February 16, I was told that my cancer markers were in fact, positive. An ultrasound indicated there was once again, something small in my neck… smaller than last year but still there. An MRI confirmed this. My doctors believe that I am now resistant to the I-131, and so now, I’m on the watch and wait plan.
My doctor told me it may be likely that I will always have positive cancer markers; I will always have cancer. And so, I’ve sort of just embraced this fact, and really jumped into the cancer culture, and advocacy, and society that has been building throughout the world. I believe in young adult cancer advocacy and networking and socializing. I believe in raising the quality of life for young adults with cancer. A lot has changed for me in the past five years, and so, over the past few months I have been blogging and sharing my views, along with giving and getting support from other cancer fighters.
I’ve barley skimmed the surface of what my cancer experience has been. It would in fact take an epic novel to cover how it has affected my life, its impact on dating, job searching, and school, how I have learned to face and fight it, to speak all my views on advocacy and treatment, not to mention I could have whole chapters on dealing with insurance companies, or the challenge of finding good doctors. Even now, it is hard to find a fitting ending, since my story is ongoing. I hope that my story can provide some sort of comfort to other cancer fighters reading it in knowing they aren’t alone, and I hope it provides some education and enlightenment to family, friends, and physicians about our fight.

I'm Nic Ulrich, and I survived Cancer. Twice!

Keep on fighting the good fight. And write that novel! There is a large group of people out there who want to hear about this kind of story!

  • Tue Jan 12, 2010
I'm Melinda Elliott, and I support someone with cancer

The one thing I wanted to comment on about this is…I HATE the phrase “easy cancer” or “best cancer.” Why do people say that? It irritates me so much! You’ve shown it isn’t easy, but you sure have kept your humor. Good luck to you.

  • Wed Jan 13, 2010
When it comes to your own medical care, you call the shots.

Your story is moving. I also hate the phrase: “the best cancer to have.” It’s one of those denial phrases.

  • Wed Jan 13, 2010
I'm Deanna Harding, Community Marketing Manager at Navigating Cancer.

Robin,
You have so much to share. I encourage you to write and share more of your journey. Share your blog here!
I agree with you regarding advocacy, networking and socializing, its vital-

  • Sun Jan 17, 2010
Hi, I'm Hope R P.

Can anyone help me understand the " number thing" placed after blood test on my cancer and by reading other post, some state they are at 13-…. and if I am not mistaking, after two surgerys and radiation treatments and medication daily in August he said and i think .4 is were I am at??? But now for the last two months I have went back down hill, unable to get up out of bed and they say rest when i need to but i can sleep non-stop, cannot remember things or concentrate and I was getting so much better after radiation and regular diet was allowed and it lasted for months, from July to November-mid and It is driving me crazy in itsef that I cannot participate with my kids and that hurts the most… i have lost 80 poinds since both surgeries Jan 2016 and was feeling so good… any advice and help understanding this and my number thing as I call it … I thank god for each and everyone of you because if you were not here I would not have anyone to ask anything or try to understand what this is making me feel like….
Thank you,

Hope and my 4 babies ( children)

  • Sun Jan 22, 2017