Whatchu talkin bout Willis?!

so, in my search for people like me out there...30 somethings that have been diagnosed with kidney cancer, the pickin's are slim. many personal blogs are about random drama in people's lives that few other people in this world give a rat's a$$ about...this one will probably be no different. although the main subject will be my cancer, i'm sure i will go off on random tangents about anything from mixed emotions to who cut me off on the highway today. im not an english major...i wont capitalize or punctuate correctly, i will change tenses and i will speak like a g33k from time to time. basically i will be me...because i can hide behind my computer screen and its great!

ps...i will also jump around...my mind is all over the place all the time...

Tuesday, December 11, 2007

Dr. Doom DOES Laugh!

3 weeks into the sutent cycle, i have to have my white cell count, platelets and hemoglobin checked to see if i can safely finish the 4 week cycle. so, today i had my 3 week checkup. i wore my "My oncologist is better than your oncologist" t-shirt...hoping for a smile to appear on dr. dooms face like at the end of the grinch that stole christmas. not only did i get a smile, he was laughing and blushing...it was great. i told him that it is my goal to make him laugh every appointment...he told me that it is his goal to get the bad kidney and ovary out of me.

after my exam, he started talking about his hopes for being able to talk surgery in the first of the year...after they get a look at my scan on Dec 27th. I was in shock...he never talks about maybes...he is usually straight to the point, no fluff, nothing that isnt based on fact. But today, today he was hopeful and very optimistic about how the sutent is working. today was the best day! I was re-energized with hope...im not overly optimistic tho since the sutent hasa lot of work to do to get to the point where my kidney is operable. so, i am hopeful, but realistically hopeful so that if i receive bad news come Dec. 28th, i will not be completely crushed, it will simply be a minor setback.

on a side note...i have what my family has always called a "Nerve Bump" on my arm. it is an extremely sensitive nerve ending that has grown up from the muscle and forms a bump just under the skin. it looks like a bug bite. i have had it since i was 18. with some light research online, my family believed it to be Reed's Syndrome. my grandmother has some on her arms, my aunt has them all over her arms and back, my mom has a handful on her leg and i have 1 on my arm. my aunt found out that she had a large fibroid tumor. it was benign and she had it removed. my mom also had fibroids years ago...i however, have never had any fibroids. my aunt is in so much pain all the time due to her nerve bumps that she has done a great deal of research online and found some research that linked these bumps to fibroids AND cancer! It is now called HLRCC(Hereditary Leiomyomatosis Renal Cell Carcinoma). we brought this to dr. dooms attention a while back and he looked into it, but determined that based on what the pathologist saw from my original biopsy, they were not related.

Today i tell him that my nerve bump is not only much less sensitive, but it also seems to have reduced in size. he was so excited and interested in this fact, he said "we're going to make you rich and famous!" he left the room and went to get who will hopefully be my surgeon, dr. white to show him this amazing bit of biological material....first thing dr. white said was that he wanted to get a t-shirt like mine, then he said he wanted to biopsy the nerve bump because it was fascinating! they were like giddy school kids...they were so excited by the potential discovery that could be awaiting them if they could just get a piece of me! then a little bit of reality set in and they said they wouldnt do it until my blood work came back. at that point, we decided to schedule the biopsy for a later date...once we got my blood work back and it looked good to proceed.

so, THAT was exciting too! if they find a link between my nerve bump and cancer...i might be famous! i might actually be going through all of this for a reason....to help others in the future...and i might actually get to see and be a part of this medical advancement. today was all positive. absolutely wonderful. I am still keeping my fingers crossed for my scan on the 27th....please be good news!

4 comments:

Anonymous said...

Yes!!!! Yes!!!!! Yes!!!!! On all accounts! Will write more later girlie! Big bear hugs for you!!!! Wondertart

Bean Saver said...

thx 4 the support. keep those fingers crossed...or pray...or send good vibes to my aura...whatever floats your boat. :)

DaveEats! said...

Great stuff! Glad to hear of the positive news, so when they credit the new finding to you are you going to use your real name or stick with "the bean saving bear"? Either way you'd think they'd be hooking you up with a few "samples" if you know what I mean!?!?!

Keep us posted and we'll keep you in our hearts and minds!

shashank said...

Here is a link to more information about the genetics of Hereditary Leiomyomatosis and Renal Cell Cancer that was prepared by our genetic counselor and which has links to some useful resources for those dealing with this condition: http://www.accessdna.com/condition/Hereditary_Leiomyomatosis_and_Renal_Cell_Cancer/181. There is also a phone number listed if you need to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA