Its always something Act 2

Cynthia,

You are a real trooper! Glad to hear that it is not renal carcinoma and that you have a plan of action. Prayers are going your way. Tedious is a good choice of words. Hang in there...and EddieK also.

Anita and Doug

Well this trip to Boston should have seen us back home today but the ice storm got in our way so tomorrow we can make our escape west. The tests are over for now and I glow in the dark and have so many holes in me I am afraid I might start leaking but other than that am doing fine.
If someone told me I had to sum up what it is like to be a blc survivor in one word I would instantly say “tedious”. Any of you that have dealt with it for any time invasive or non invasive would understand that word choice I am sure.

So what do we know now? The good news first it does not appear to be Renal Cell Carcinoma! What we know for sure is the following. My left ureter is severely blocked partially at least if not fully (the probable cause of the abscess). So the neph tube stays in place for now. The main worry is the question of the blockage being caused by CIS or is it scar tissue? My creatinine has improved to 1.49. I have severe acidosis my plasma carbon dioxide is 19.7 and my Lymph’s are 12 and that is the short list there are so many highs and lows on my blood work that it would take to much time to talk about it.

So what do we do? The decision was made to send me to Chicago to Gary Stienberg who did my RC. He is reviewing everything and is going to hook me up with someone who specializes in metabolic problems. I will know Friday when I need to be in Chicago for my work up and when my surgery date will be. The only thing I will not know for a while is what type of surgery is required.

I have been doing what we all have to do when we are faced with a bump on the blc road we start researching. I am taking a long look at all of my medications to see if they could be playing a part in all of this. Even if the mineral absorption problems is from kidney damage from chemo anything that could make it worse needs to be identified. It is amazing how much we have to learn about subjects we didn’t even know existed before blc isn’t it?

Thank you for all of your well wishes it means a lot to Ed and I. This is just another bump in the road and we will get through it. I will keep working but will start asking some of you for more help we have so much to do to get the word out about blc and making sure that no one has to face this alone.

Chin up and straight forward