gracipher
gracipher's Cancer Blog
June 1, 2010
Sorry I didn’t update sooner for everyone who has been sending me thoughts and prayers but I unexpectedly heard from my doctor on Thursday, the nuclear medicine doc at WHC. He got the blood test results from while I was on the Thyrogen to see if my thyroglobulin (TG) or thyroglobulin antibodies (TGAb) were present. Apparently they are both undetectable at the moment which is good, well actually its really good. I know I should be happier about this result but I’m not quite there yet. Mostly because the scan was still not “clean” – the spot they saw could be something or it could be nothing but I really would like at least one time to get a clean scan. Of course they will do nothing now, no radiation – so my gut instinct was wrong (seemingly for the first time) – which a bit disconcerting as well. But now I’m here and the test outcome was good – surprising…
Just as a follow-up for those of you who suggested I contact the woman from work in my post “You never know who’s in the room” – I did end up getting her private email. She was glad to hear from me and I wound up sending her the blog post since at first she thought I meant I also had BC. She commented that she would like to talk to me when I see her next time just to chat in person. It was definitely an enlightening discussion and I’m very glad that I was able to contact her, but now I just pray I don’t happen to see her when I’m “on” with a client because it might be awkward – it should be good though, I’m not going to worry about that!
I’ve definitely been more anxious lately so I hope that will start to subside. Going off my anti-depressant/anti-anxiety medicine during the same week I started the shots/scans was just BAD timing. I’ve only been on them for about 4 months and never had taken any kind THIS kind of med before so I didn’t realize just stopping because I ran out was a BAD idea. Now I know that (after being scolded by a million people), am back on and trying to find normal again…
May 21, 2010
Well, looks like I might need another round of radiation.
I did not feel confident about this test, I knew they would find something b/c they did last year and had proposed surgery but nothing final came of it. Then in Nov I got sick and had to take a test w/contrast meaning I couldn’t get another ablation dose for 6 months. So now I’m back looking at likely radiation again, and with my full summer plans I told them August is the best bet. The doc still needs to wait for the suppressed blood draws from today to know for sure if I need another dose of radiation so I will get a call from him next week.
And since I’m at WHC in DC they can do dosimetry, meaning they can calculate not just an imperical increased dose since the last one but can calculate the maximum safe dose w/o risk to bone marrow. Meaning it will be a big dose- and I thought that’s what I would want but now faced with the possibility… it is scary. I can’t go back with radiation so if it doesn’t work at that high dose, it means the next dose would do damage to bone marrow for certain… I guess I need to think about this.
I don’t think I will postpone any summer plans, hopefully that will be a right choice. I should be used to receiving bad news by now but I feel very alone.
It does give us a feeling of being so very alone – I wish we were neighbors because I would be there to support you as you go through this journey – but even then it’s a lonely feeling because no one else has exactly the same path of medical treatment and development. The decisions are so difficult and making them is an extremely lonely process.
We are here with you to support you. Hopefully someone who has been through this decision before you will offer their perspective.
When my surgeon asked me to make a decision whether I wanted to go the radiation-chemo route or the surgical route, I had no clue what the wise decision would be – so I said “what would you decide if I were your wife?”
He thought for a moment, smiled and said, “i would do both” and this is what we did.
You have such a difficult decision in front of you. Ask your doctor what he or she would do if you were their family member. I’m sure they would have an opinion, and maybe that would help you. Stay strong.
Posted on Oh, Grace. This is not an easy decision, for sure. Would it make sense to get a second opinion? (I don’t want to throw a monkey wrench into the works). The problem with this disease (okay, there are many problems), is that there are no good options—we can only weigh one treatment’s risk/effectiveness against another treatment’s risk/effectiveness, or do nothing, which is also a risk. Indian6girl’s suggestion to ask the doctor what he would choose for his own family is a good idea. Perhaps someone on the expert panel at the thyca meeting will have some thoughts for you. I understand that you feel alone even with BFAC trying to hold you up…I am only about an hour from you—I could come visit, and just listen. Honest. Or we could meet half way and have coffee. Whatever works. I will wait for your post with the results of the suppressed blood draw. Hang in there.
Andrea
Posted on Hi Grace—
I’m sorry to hear you say you are feeling alone right now. I hope you will get enough info from your docs and the tests to make a decision about this treatment. I always go with my gut feeling when making major decisions and usually it’s the right one. I hope that will be the case for you. Please keep us posted.
Martha
Posted on Grace your not alone, believe you me there are a lot of us pulling for you and praying with you. You stand tough gal!
Posted on I think I spotted a chink in your armor, I’d like to step in and help seal it up. Count me in as another supporter.
Sorry I can’t chime in on the ablation, imperical dosimetry, fos oh la de do…?? :) I learned a lot thru my treatments, but obviously different stuff.
I do however agree with the others and get as much guidance as you can from the docs and nurses; then go with your instincts.
Sending hugs and prayers,
Greg
Posted on Hi Grace, I’m sorry to hear that you are feeling alone, but don’t ever give up. Please know that we are all supporting you here, in one way or another. Many hugs,
ELi
Posted on Hi Grace- I am sorry to hear about your latest news. What test – if not the bloodwork – did your doctor do to determine you will probably need another round of radiation???
05.22.10 
Thanks for your support - 
Hi Grace,
How wonderful to get good news and good numbers. But I understand your apprehension about celebrating. Maybe we get so used to the worst news we don’t trust good results when we get them. We’ve all already won some diabolical lottery by getting cancer in the first place. Perhaps once your anti-depressant kicks in again you’ll give yourself permission to be a little more upbeat. (I’m not being facetious). In the meantime,I am very pleased for you.
Andrea
Thanks for sharing your good news, Grace! (And I promise I won’t scold you for stopping your meds! :-) )
Del
Hi Grace, good to hear the good news and good numbers. It is always difficult to be upbeat about something like this because unlike other folks, we just never know if and when cancer will rear it’s ugly head again. Live for today and keep the faith, hugs,
Eli