Welcome

This blog is for me but you are welcome to listen in if you would like.

It is my place to talk to myself and record my journey. Right now I am on the roller coaster of advanced thyroid cancer and would love to get off. I am also dealing with children with a host of medical issues that I can't just ignore, though I wish it were an option. Nothing can go on hold and no one else is able to do my juggling act for me. Want to be or not, I must be superwoman.

Yesterday I had my first Thyrogen shot, today my second. $1k each. Ouch. They have effected me emotionally more than I expected. I am weepy and feeling down which is really hard considering the fact that I have a very busy week and too much to do. Yesterday I had the injection, a blood draw and three appointments. Today was the second injection and Zlata Tova has an endocrinologist appointment in Jerusalem this afternoon (and PDZ is working, so I have to figure out child care for the others) and dealing with lots of paper work for referrals and prior approvals.

The nephrologist thinks that Renagel would help the calcium situation. It is phosphorus binder. Right now my calcium levels are swinging wildly. My parathyroid isn't doing its job at all (my PTH level is < 3 ) so I am on alpha D3 to help absorb the calcium and 4.8 grams of calcium split into four doses a day. The alpha D3 we keep on adjusting according to my calcium levels, but so far we haven't found one that is holding things steady. The nephrologist thinks that that is because my parathyroid should also be controlling my phosphorus level, which it isn't. My phosphorus is very high and that is effecting my calcium levels. If I understood him correctly, phosphorus binds with calcium, which would explain why even if when I do have normal calcium levels I am neurologically appearing to be hypocalcemic.

The problem is, Renagel is expensive. Insurance usually only covers it for end stage kidney disease patients on dialysis. Thank God, I am not. What they don't understand is how yucky it feels to by hypo or hypercalcemic and how much it is effecting my life. My PCP and nephrologist are fighting for it. It costs about the same as two trips to the ER for IV calcium a month and could potentially eliminate the need for the trips. Maybe we will get it covered. Maybe not. I want the numbness, tingling, muscle spasms and fatigue gone and think it is worth a try.

One piece of good news is, we have given up on the low phosphorus part of my diet, so I have more things I can eat. My phosphorus wasn't staying in control with diet. Now I am just on low iodine and enjoying the fact that I have some food choices again. I can eat whole grains, seeds, nuts, chocolate, and drink soda. I am not normally a soda drinker, but I need some caffeine to get me through this week. I am still not allowed to have dairy, egg yolks, sea products (including sea salt, which is most of the salt here, and fish), some beans, red dye, molasses, soy, or potato skins because of the iodine, but that is much more manageable than both diets at once!

After my scans Wednesday, before my oncologist appointment, I plan on having a nice big cup of iced coffee at the mall attached to the hospital. I am not sure if a want a tuna sandwich or a home made pizza for lunch, but what ever it will be will be high in iodine. :)

Tomorrow is the first part of my Uptake Scan. I am a little worried. The scan is just of my neck (though we know there may be more distant metastasis) and will determine the dose for my radioactive iodine (RAI) in August and whether I need more surgery before the RAI. Any nodes that show up in my neck on the scan will have to be surgically removed. The RAI is only effective on the traces left behind, not actual tumors.

My surgeon is a wonderful man, was very thorough and took out almost a hundred lymph nodes three tumors and my whole thyroid, but what he did was only a unilateral neck dissection because the ultrasound on the left half of my neck looked okay. I hope it was the right choice. I can't imagine going through the surgery all over again. Knowing how hard the surgery is and how hard the recovery is will make the anticipation that much worse. It would be much better not to have to do it.

Calcium yesterday 8.9 (normal 8.6-10.2) up from 7.8 last Wednesday. We are still sticking with 0.5 of the alpha D3 twice a day. I feel hypocalcemic, though nothing like I did last week when I was ready to crawl out of my skin. The numbness and tingling are there, but can be changed by shifting weight and pressure points, not holding the phone for too long, etc. The cramping in happening but not waking me up at night. I am definitely feeling better in that regards.

TSH was down to 11.14 on my labs from last Wednesday!! It is still a far cry from our goal of .01-.02 (normal is 0.03-3, but due to the cancer they like to keep the thyroid stimulating hormone (TSH) suppressed so it doesn't stimulate cancerous thyroid cells to grow) but it is much much better than the numbers in the 30s and 50s we have been getting until now. I have heard that as long as the TSH is high the fatigue is the same, no matter how high, but I am not sure that is true for me. I certainly was feeling much much less hypothyroid until the Thyrogen shot yesterday.

My Thyroglobulin is up from 9.0 to 11.2. Goal on that is zero. The RAI will hopefully take care of that. Under 2 unsuppressed is usually just a watch and wait scenario. Considering those are suppressed numbers, which should be lower, right now it is clear that either more surgery or hopefully just the RAI is needed. Hopefully my unsuppressed labs tomorrow won't have higher numbers.

Sorry, if you are listening in and I am not making sense. I don't have the energy to explain everything properly and get it all down as well. Starting this blog months into my journey, when I don't have the time or energy to catch anyone up (I barely have the energy to get through each day), isn't exactly ideal but neither is the situation.