o.k. well, maybe that is a little dramatic, but sometimes i do feel like i am in the twilight zone. any moment now i can just hear rod say: she used to be just an average wife,mom, health care professional, but now she is going to get a taste of health care on the other side!!!" imagine lots of screams here, fade to black. sometimes i do feel like this is really not happening to me- it must be a dream i have yet to wake up from. not that i have been treated badly of course, but there has been a lot of waiting. i feel like i am in a foot race against cancer, and i need to get to the finish line before my cancer does. i have had to wait on my biopsy report, then wait for an appointment with my surgeon,then wait for the surgery, then wait for a follow up appointment with my surgeon, then wait for an appointment with my endocrinologist. now i am waiting for my treatment. the insurance company has to do a prior authorization ( even little kids know what that is,these days) on my thyrogen injection. i need two injections ( total cost is about 2500.00) before i can have my radioactive iodine treatment. then after that, i will need to wait some more until i can get my whole body scan. oh, and then i will need to wait some more until i quit glowing in the dark. ( my co-workers are a little nervous about me returning to work until i cool down, so to speak)
i started this journey in april of this year. i have had lots of scary moments, shed lots of tears, and laughed a little. i have had enormous support from my family, friends, and some people i did not even know until now. i appreciate every kindness that has been shown to me and all of the prayers that have been said for me. i can only hope for the best, and in the end that's all any of us can do. i do appreciate a good Golden Earring song,though.
Bea, I'm so glad Jeff shared your blog site with me! Blogging is such a great way to share your feelings and help others dealing with similar situations. Jeff has done an excellent job keeping us all updated on how you're doing :) You continue to be in my prayers! Please let me know if there's anything you need!
ReplyDelete~Mandy
Came here via Mary Shomon's site. I'm about 6 years ahead of you on the thyroid cancer journey. You are doing great! I want to encourage you -- there will come a time when you won't think about having cancer every day. You'll get there, and using Thyrogen will make that day come a lot sooner than it did for me when I had to go off meds for 2 months!
ReplyDeleteI recommend you check out www.ThyCa.org and see if you have a local support group -- they are invaluable -- and of course there is tons of great info on the ThyCa website.
You haven't mentioned this when talking about your RAI treatment, so I will, and sorry if you'd rather not think about -- it is recommended to follow a Low Iodine Diet for two weeks before your treatment, it can really improve how well the RAI is absorbed. It takes some preparation but it's only a couple of weeks -- at the very least it gives us a sense of having some control over our outcomes.
I wish you all the best.
I too found your blog from Mary Shoman's site. You are about 1 year behind me. I had my thryoid removed in March of last year and then found out in April that it was cancer. I was on meds for about 2 weeks then had to go off them and follow the low iodine diet for two weeks before my radiation treatment. I don't know what Thyrogen is. That was not part of my treatment.
ReplyDeleteI am doing well today and my prayers will be with you as you face your treatment. I look forward to reading your blog in the future.
I'm another who saw your link in Mary Shoman's article.
ReplyDeleteMy thyroid was removed in December, 1997 due to a cold, multinodular goiter which was causing dysphagia. I quacked like a duck when I swallowed - but luckily there was no cancer.
I'm curious as to what the doctor's rationale is for getting radiation to kill your thyroid, rather than having surgery. I'd be concerned that the treatment could damage or kill the parathyroid glands, which we need to absorb calcium from what we consume.
As is, my surgery took two of mine with the thyroid, because they couldn't be avoided.
After my own surgery, the doctor waited to adjust the dose of the levothyroxine I was taking. After two months, however, my TSH was 32.5
Let's just say I was a little depressed.
I was able to convince my PCP to change me to Armour thyroid, and very soon I was able to crawl out of the hole I'd been living in.
And I hope that you achieve the best possible result.
As I'm going back through the posts, I'm finding out more of what your situation is - it's obvious now that my question is unnecessary.
ReplyDeleteAnd I still hope you achieve the best possible outcome. :)
I am 8 years ahead of you and I guarantee that it will get easier. I still think of my cancer daily as I lost the nerves in my right side because the cancer had spread to them and they had to be removed, so my neck is numb.
ReplyDeleteI have also struggled with B-12 and am finally feeling better now that I take an active form of B-12.
I will be following your progress and wish you the best!
I am another recruit from Mary's site, but I am glad to find your blog. I had thyroid cancer 13 years ago, when I was 15. I had 3 surgeries total, the second was a full thyroidectomy, and the 3 was to remove more cancer. I too had to do the "glowing" treatment, but it sounds a little different now.
ReplyDeleteI feel like I am learning from you. It makes me realize a lot has changed, and I need to get more current information and find a good endocrinologist. I moved to Utah for a job 2 years ago and still have not found a Dr! Bad me! I had my parathyroid "accidentally" taken out, and some of the hardest struggles I have are due to that, so I need to get levels tested again. I have been disenchanted by some docs, and need to just get over that and get myself back on track. Thanks for your cute, and candid blog!
Bea-like the previous posts, I found your blog through Mary Shoman's newsletter. I had both thyroid lobes removed in March and April of this year (2 surgeries 25 days apart) after an ENT found 1 nodule in my left lobe. I was also in that 5% of malignant nodules. Luckily my nodule was really small (.6cm) and it had not spread anywhere else. Like you I try to remain optimistic about all of this and move ahead through all of the blood tests and follow-ups.
ReplyDeleteI'm so glad I found your blog-good luck. I'll keep reading!
Bea - I found out yesterday that my biopsy showed thyroid cancer. I am so glad to have found your blog! Reading through it has given me an idea of what to expect as I start to navigate my way through all this. Thank you for sharing so much information! Good luck to you - I will be wishing good things for you and for your continuing recovery to smooth and quick!
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