Monday, February 6, 2012

Figuring things out....

Well, I'm just now figuring out this blogger thing.  For one thing, you can follow without joining.  Joining allows you to reply to any of my posts.  Joining can also give you alerts when I post something new.  I have learned how to edit, finally....since the auto correct uses the same made up words as my Android does :-) to change the meaning to something nonsensical.....

Here is the lowdown on Friday, February 3, 2012 - my first infusion.

John and I left Austin about 7:30am on Friday morning for Houston.  We made it to Houston, but got turned around looking for MD Anderson - again.  I think we got it now.  Parking and getting into the building was easy going the second time around.  Once we remembered how to work the elevators and escalators, we were navigating that place like pros.  This is because patients are sent from one area to the next and then back again throughout the day. 

Getting on the elevator, an older gentlemen smiled and nodded good morning to John, then turned to me and asked "how are you today?" I smiled back and said,"Today, I'm doing o.k. How are you today?" He replied, "Today, I'm good." Sometimes, its just that - day to day and that's o.k. Live in the moment.

Once we made it to the 9th floor, Melanoma Clinic, we first met with the research nurse, Shy, about the clinical study and to sign the consent forms.  Shy gave us some more information about the study.  Including me, there are 14 patients in this trial right now.  The first patient showed a 35% decrease in tumor size after 5 rounds of treatment and 55% shrinkage after 7 rounds.  When she told us this, we both smiled, and then I quickly did the math.....1 round = 8 weeks, 8 x 7 is 56 weeks; an infusion every other week.  I started to panic about the notion of coming to Houston every other week for an indefinite period of time. I looked over at John and he had a huge smile on his face.  "Why are you smiling? We are going to be driving here for a longtime." He replied calmly, "I would be happy to drive to Houston every other week for the rest of our lives, to have you not be too sick and be alive." Tears welled up in my eyes with such happiness. If you don't know John very well, or even if you do, this is a true testament to his character.  He loves deeply and wholly, without caution or looking back.  I have my soul mate at my side.   The other 12 patients are stable for now - they are much newer to the trial, so shrinkage is not yet certain for all participants. This is also good news, as long as the tumors don't change, that means its working! I have 7 tumors that we are watching (2 are big and 5 smaller ones).

Each time I go in for an infusion, my blood work is checked, particularly my glucose since this drug tends to raise glucose levels in patients.  I will also get an EKG each time to check my heart rate and rhythm.  I thought that I was ready to start my infusion, when after a couple of hours of waiting, a nurse asked me if I was child bearing.  What? Well, no I am not having any babies.  John said, "yes, she could get pregnant.", back down to the lab for a pregnancy test as well.  Add that to the routine (I'm guessing that the other 13 participants in the trial are not pre-menopausal OR are men).  It took 2 hours for the lab to tell me that I'm not pregnant.  Really? 

Finally, I'm called into an infusion room at 4:15.  After another blood draw and some saline, the nurse orders the drug from the pharmacy, which arrives by 4:40.  One hour of infusion and then one hour of observation after.  John went to get us some food.  Most of the time, we watched Diners, Dives, and Drive-ins on the Food Network. It must have been a marathon or something.  I don't think anything on those shows was organic!  The IV was really the worst part of the actual experience. 

We were back in the car by 7:07pm and arrived in our driveway by 10:07 - not kidding.  I was in bed by 10:30pm and came up for some air and eating throughout the weekend.  Now, back at my desk for the first time since Thursday.  My next visit to Houston will be Friday, February 17.  Many thanks to everyone for your strength, love, faith, hope, and positive support. 


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