I have been wanting to update for a few days, but I just haven't had the time, nor the energy. Technically speaking, I don't have either of those today, either, but I didn't want this to go much longer.
Medical bills are flowing in by the handfuls. Remember those days when you got 1 bill for all the stuff that happened at the hospital? Yah, those days are over. The surgeon wanted money, the anesthesiologist wants money, and the hospital wants money... 3 separate bills, all 3 for the same thing - my surgery. Then there is the follow up visit with the surgeon, the follow up with the endocrinologist, and the copay for getting my blood work done 1 month after surgery. Yes, there are lots, but seeing what the bill was supposed to be and what I actually pay is still making me overwhelmingly grateful for insurance... and my husband's job that gives us the money to pay for all of it the stuff that's our responsibility.
I have been 1.5 weeks into my low-iodine diet (LID, as it is referred to by those on it, online). Getting ready for it for stressful - learning what I can and can't eat, making preparations for myself ahead of time, trying to plan out a menu for everyone else. While I was planning for the diet, I followed my doctor's order for it, which they literally said, "follow it as it is written on thyca.org 's website." But after I had made some preparations and meals ahead of time, I started to find a lot of confusing things that added different/additional foods to avoid, some of which I had put in my "make ahead" meals. I decided to not stress over it because I had followed my doctor's orders and they seem to know what they are doing. After I started the diet, while I was researching a few things online, I kept hearing about a Facebook group that helps people navigate the diet. I decided to look into and found them to be a wonderful resource, with lots of support... not only for LID, but for my upcoming Radioactive Iodine treatment (RAI). LID Life Community offers the Facebook group for social support and immediate answers, but they also have a website dedicated to LID that allows you to search for a product and find out if it is safe or not. They have contacted manufacturers to find out of they use non-iodized salt and have a whole long list of safe manufacturers. It opened up my world, a bit and made it so I can relax on this diet and not feel so starved. Their slogan/motto is "No one fights alone!" This process has been very isolating for me (and I'm not even in ACTUAL isolation yet, that is coming) and to find a support community that wants to help me navigate all of this has been huge! There are still some things that I find confusing - for example, their philosophy follows one bit of research that shows that you shouldn't eat sour candies during the first 24 hours after RAI, but most doctors advise you to do so... mine included. RAI can affect the salivary gland, so the doctors advise you to make your mouth water as to increase saliva production. When I asked my endo about following the new research or my other doctor, she advised me to follow the nuclear medicine doctor's advice, as he has loads of research to back it up and has a protocol that he has developed to give me the best possible outcome, based on personal research and years of experience. Yet, I have read the actual report from the 24 hour thing and see that overwhelmingly, patients that did that had trouble later, but all agree that it is super important to cause salivation AFTER the 24 hours... so, I have a plan to find the middle ground and try to follow both. How can one both eat sour candies and not eat them, at the same time? I have a milder candy for the first 24 hours and a more extreme candy for after the 24 hours. The milder candy should cause me to salivate at more regular rate/amount and the more sour ones will cause me to salivate in an extreme manner afterwards. This should both protect me from not salivating and protect me from salivating too much (in the first 24 hours.) :) Regardless, I am thankful for good doctors and good support groups!
Monday starts my RAI process. I will go in and get my blood drawn prior to anything, then I will get shot #1. Tuesday, I go back for shot #2. Wednesday, I do more blood work and then I get a pill with a lower dose of RAI that is used for scans and will not make me radioactive or dangerous to others. Thursday, I go back, give them blood again, and then stay for 3-4 hours of scanning. They will scan my whole body, and get very clear images of my neck. These scans show them how much thyroid tissue is left in my neck, and if they thyroid cancer has spread any where else. I should have ONLY a tiny bit of tissue in my neck that lights up, anything more than that or anywhere else in my body, and we have a problem... A doctor than reviews these scans and uses what is found, plus my height/weight to calculate the specific dosage I need of the RAI. They want to know what the highest dose the they can give me with the least amount of side affects, which is the lowest dose possible to still get the job done. Does that make sense? Probably not to anyone but me, but it does in my brain and that's all that matters.
I then get the weekend off, still have to do the LID but don't have to worry about anything else. On Tuesday, I go back and get shot #3. On Wednesday, I go back and get shot #4. On Thursday, I go in and get my RAI pill and get admitted into an isolation room in the hospital. I can't take anything with me except for a few magazines that I can throw out when I'm done, some bottles of gatorade, my candies, and my cell phone in a plastic bag. It needs to stay in there so it doesn't get contaminated. Its all very funny... or scary... depending on how you look at it. I will stay about 24 hours in the hospital or until my radiation levels are equal to the environment, whichever is longer, I think. Then, I will go home, sitting as far away from my husband as possible. I will then be in isolation for the remainder of the 7 days (the next Thursday), at which point, I will be safe to resume normal activities. I do have to go back to the hospital for one more scan on the Tuesday before my isolation is up, but that should be fine. Some internet resources state 10-14 days is better/safer range for being more normal, so I will come out of isolation at the 7 days, but still be away from my hugging my kids for the full 10 days, and not letting them sit on my lap for the 14 days. I will then consider myself fully safe.
Another fun fact, I have gained 15 lbs since surgery, 20 lbs since finding out I had cancer. The first 5 lbs was stress eating. As I said, this has been an isolating process. I have found myself very overwhelmed and feeling completely alone, even with the amazing support I have. It is crazy to go through this and is overwhelming at times. I find myself getting teary-eyed if I dwell too much on it. Luckily, my medication wasn't at the right dose (we are hoping it is better now), so I have been too tired to be able to put too much energy into feeling sorry for myself.
Also, I started taking Taekwondo with all of the kids, so that I can have a regular exercise program for myself. Making myself go when I feel so tired and my body is so achy has been really rough, but I am just getting ready to kick cancer's butt. (I can't believe I just used that word, I never say anything that strong! But saying "bum" just didn't have the right affect.)
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