Monday, April 15, 2013

Scanxiety and a little Vasovagal response to boot!

It has been over a week since my last visit to MDAnderson.  I have been coping with side effects on a daily basis.  I wake up grateful to be awake and then get through each day the best that I can.  The side effects have seemed to increase since dose #4, which makes sense because I have the most medication in my body at this point in time (thank you Lea for reminding me of that!).  The Yervoy takes 6 months to clear your system, which also means I'll be starting an even stronger dose before these four doses have cleared out.

I know that I often talk about my job.  Job is the wrong word for it really, its more like a calling and that I've found myself in the right place along the journey - one that feels good and right - one that has given me a feeling of self actualization that I have not experienced to date.  Its important to me that I maintain enough energy to keep on this right path and not lose my way.  When I have several days in a row of feeling like I have the flu (when I don't) or itching with hives head to toe or itching for no apparent reason on top of the other "regular" side effects of fatigue and back, upper abdominal pain and digestion issues, I sometimes worry.  Actually, I have had many people ask me why I haven't gone on disability.  For many other job types, this might, probably would have been the only route for me at this point.  However, I am fortunate to have a position where I can do much of my work from home and particularly this semester, my schedule is relatively flexible.  I also have a husband who never minds carpooling me when I need it.  This is tremendous help. 

As the scan date neared, I began to wonder and think about the process and outcome a bit.  I knew that Yervoy is slow acting, so my first question was not "did they get bigger?" but "are there any new tumors?"  There are no new tumors - or in medical terms, no disease progression.  Whew, this is great!  The answer to the next question is, yes all of the tumors appear to be bigger.  This could be from a process called apoptosis, when the tumors swell as they are going through cell death.  There is significant cell death or necrosis throughout the tumors.  I get scanned again 5 weeks from the first scan. 

This trip to Houston was good with John.  It had been awhile since he had gone with me.  I don't have to navigate anything for him, so it can be relaxing in a different way.  We are mostly silent through the day, getting through the appointments.  My port was accessed through the scar, which made the blood draw a nightmare.  I nearly passed out, vomited several times, sweat from head to toe, and caused quite the scene in the Lab that morning.  John was called back to rescue me.  He calmly reassured them that I do this and then looked at me and asked, "has the wave passed over you?" "Almost," I replied, knowing that I needed just a few more minutes to rest there before rushing off to the next appointment. I have done this many times throughout my life.  Its just something that some people do.

Since we were late to the next stop, I was skipped over for my last appointment and squeezed in about 2 hours later......

After the visit with the physician and getting the scan results, we went over to Uncle Keith and Aunt Darla's house for the night.  Cousin Kelly came over after work and had dinner with us.  It was so relaxing!  The next morning John and Uncle Keith got up at 5am to go fishing.  I slept until 9:30 when Aunt Darla came in to see if I was o.k. :-) Yes, I was more than o.k.  Then, we went over to Kelly's house to see her and the triplets (they turn four this summer).  They are getting so big!  Axel sat in my lap and played games on the iPad nearly the whole time. I was loving that cutie pie!  Brock and Cooper played like there was no tomorrow.  My cousin Kelly is an amazing mother....I just have no idea how she does it!

Lea, my sister, and I are going down to Houston for the next visit around May 10....not set yet.  This will be another scan visit.  Until then, Happy Spring! It is really gorgeous here in Austin.

Peace and Acceptance, Kara 

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