It’s now been a little over two months since the zebra (otherwise known as my gastro-intestinal stromal tumor/GIST) was removed.  I have been back to work for over three weeks and the lifting only 15 pounds weight restriction was removed last Monday.  When I first returned to work, the six weeks I’d been out on medical leave felt more like months than weeks; I had trouble bending over, I got tired easily and my abdomen was very tender.  Now it feels like I was never gone from work, I can tie my shoes without discomfort and at times I even actually forget that I had abdominal surgery.  The abscess still lingers but is much smaller – only about 2 inches of 1/4″ gauze packs into it now.  My surgeon is annoyed that it hasn’t closed completely yet (and in all honesty, so am I!).  She is giving it one more month to close up and if it’s still not completely healed, she wants to bring me in for “day surgery” to intervene and surgically close it.  I’m praying it closes up on its own.  I’m not too excited about any more cutting and stitching in the abdominal area right now!

So, its now time to move on to the next phase of adjuvant therapy.  Since the pathology of the tumor indicated high risk of recurrence, I will be taking a drug for the next three years to hopefully prevent any additional future growth.  No more zebras in my zoo!!  I picked up my prescription of Gleevec and will be starting it next week.  Gleevec is a Tyrosine-Kinase Inhibitor (TKI) and is a specific, targeted therapy.  There still could be side-effects but I’ve been told it is generally well tolerated. (The following is from one of the many sites I’ve found since I started researching GIST and Gleevec: Tyrosine kinase inhibitors (TKIs) are a class of chemotherapy medications that inhibit, or block, the enzyme tyrosine kinase. TKIs were created out of modern genetics – the understanding of DNA, the cell cycle, and molecular signaling pathways- and thus represent a change from general to molecular methods of cancer treatment. This allows for targeted treatment of specific cancers, which lessens the risk of damage to healthy cells and increases treatment success.) 

Since nausea is one of the primary side-effects, I’ve been trying to decide what time of day I will take the pill.  They say to take it with a meal and a full glass of water.  I was thinking about taking it in the evening and then sleep through any discomfort.  Except, I don’t sleep as well as I used to and I think that the evening hours might make me more aware of side effects if they happen.  If I take it with my morning protein smoothie and then go to work, the activity of the day and being busy could keep the side effects at bay.  I’m sure its different for everyone and I’ll just need to play around with it to see what works.  So, I’ll either be starting it this Monday evening or Tuesday morning.  I will then have monthly labs to check blood levels and liver enzymes and CT scans every 3-6 months to check for signs of re-growth.  In all honesty, I’ve simply had too much time to think about it and I just need to get to the “taking” part if that’s how it needs to be.  Many GIST patients are on 800mg of Gleevec and have to take it twice a day.  I’m only on 400mg and am blessed to even ponder the dilemma of when to take the damn thing!  I know its important to be aware of the side effects and take precautions when necessary (like my new flap hat and mega sunscreen because the sun can wreak havoc on the skin and rashes/swelling/blistering are another side effect), but a part of me wishes I was blissfully ignorant and not the “need to know” type that I am.  Although, I am my own greatest patient advocate. I arm myself with knowledge so I can live this incredible life I have been blessed with to my fullest potential.  That being said, I often wonder if I’m a walking nightmare to the medical community who has to deal with my pestering questions!

“I know the plans I have for you” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”  Jeremiah 29:11

“We can be tired, weary and emotionally distraught, but after spending time alone with God, we find that He injects into our bodies energy, power and strength.”  – Charles Stanley