Friday, August 23, 2013


oh you lucky, lucky Hope for Tanya supporters you...
two BLOGS in a week...WWWWHHAAATTT...
This morning I woke up feeling SO tired, weak and just overall exhausted.  I haven't had a day yet that I wasn't able to walk from the car to my appointment.  That day came today.  It took EVERYTHING I had to get out of bed, even more to get from the house to the car, and THAT MUCH more to get from the car to the appointment.  I had to use a wheelchair.  My legs are just so
weak, they feel like they will give out at any second. 
We found out today this is due to me being severely dehydrated.  Today I was to get labs and an exam by the clinical trial nurses.  When I pulled up in my beautiful maroon Cadillac Scottsdale Healthcare wheelchair they said "get her back and get her on fluids and draw blood now" I looked like a terrible slumped over Tata.  I crawled into bed FREEZING my buns off and they got hot blankets (oh I love those) blood and hooked me to fluid.  I soon was passed out. 
A short time later I heard some talking but just didn't bother to move or wake up...I knew mom was there and could handle anything.  I have been blessed with the most amazing mother in the world.  I can't imagine being my care taker.  I sleep all day every day, I hardly eat, I have been vomiting  too much, complaining of gas cramps, that I am hungry but I can't keep it down, sleepy but I can't sleep, hot but I am cold, so thirsty but it comes back up, energy but no energy.  She just helps in any and every way she can, she is nothing short of AMAZING.  She has been outside in the heat (100+ degrees) doing the yard work, cleaning house you name it.  I thank her every day for doing everything for me, but honestly "Thank you" is just so small in the grand scheme of it all.  I can't "thank" her enough and will find a way for the rest of my life to repay her.  THANK YOU MOM, you are the MOST AMAZING WOMAN I have ever met I hope to be half the mom you are one day.
When I woke up mom said "I know your awake over there, I hope I got all that right" Haha she knows me so well.  She did great, got it all right.  Filled me in on what they talked about and what IV's I was hooked up to.  Today they hooked me up to a 4 hour infusion of potassium and saline, dexamethasone which is a steroid.  My potassium was extremely low, all my electrolytes were totally out of whack, stomach acid was really high, and extremely dehydrated.  So I was in BAD shape.  After the 4 hour potassium infusion, the dexamethasone that was to help with nausea and to calm my stomach and will help make me hungry so I can eat, boy did it! I was naming off everything I could think of to eat! Haha she also gave me IV Zantac to help ease my stomach acid, which is what might be causing me to not keep anything down.  I have nothing in my stomach, yet I am puking non stop, my stomach acid it on the fritz.   After I woke up a few hours later, I had to pee, I was able to walk to the bathroom alone and not feel like my legs were going to give out under me.  I still needed to use the Cadillac to the car but I felt better.  I even had high hopes of going grocery shopping with mom.  Using the Cadillac of course!! We got home and had to get a few things taken care of when I just didn't have it in me.  Maybe tomorrow! :)
I am feeling so much better than when I woke up this morning thank you to the medical staff at Virginia G. Piper Cancer Center for nursing me back to health.  Your all awesome!!! :)
For those of you that have been a little confused about where I am going for this clinical trial and all that we got clarification today... Haha I see Virginia G. Piper Cancer Center in Scottsdale, they are partners with TGen.  TGen is the one that has MY ACTUAL tumor and are testing it and doing research on it.  In about 3 months OR when the testing is done.  Once the testing is done, we will have a meeting with the folks at TGen, they will tell us everything they found with the research on my tumor.  I can't wait for this appointment.  The testing and research they are doing is RARE, because it's so expensive.  We are talking $40,000 or more.  The testing is very close to the human genome, they will take my tumor and test it, find out why it has mutated, how it's mutating, and what drugs to use to kill the cancer. 
Currently my treatment is Friday and off for two weeks and then treatment again Friday.  I know a lot of you have been wanting to know when will we know the drug is working?  Well I will have a Scan on October 10th and that will tell us what the drug is doing.  My last dose will be on October 25th.  Sometime around then I will meet with the folks at TGen and they will give us more information. 
I know some of my SCCC/LCCC sisters have asked me about the trial and where to get more information.  If you or anyone you know is interested in a clinical trial, not just for SCCC/LCCC, but for any and all type of advanced staged aggressive cancer call::
Joyce Schaffer, MSN RN AOCNS
Patient Care Coordinator
Virginia G. Piper Cancer Center                 Clinical Trials
 Scottsdale Healthcare                       10510 N. 92nd St., STE 200
PROUDLY partners with TGen            Scottsdale, Arizona 85258
480.323.1339 phone
480.882.5820 fax

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