Monday, May 6, 2013

Update....Slow Recovery...Healing.... Trying to find My New Normal.......

Yes, I know it has been so long, but finally the update.  On February 22nd I had my entire stomach removed along with several lymph nodes and a "scant" section of my esophagus were it attached to my stomach. What can I say - it was a horrible experience that I wouldn't wish on my worst enemy but it was necessary and it is now done! I will never die from this hereditary form of stomach cancer the way 4 of my family members did. I am the lucky one!! I am still having to do tube feeds through the night to ensure I get proper nutrients. I hook up to the machine and the formula goes straight into my small intestine thru a small tube attached to my side. I HATE it for several side effect reasons but also am grateful because it  literally is/has saved my life.  It has been a very slow recovery with many "unexpected" problems. I was hospitalized for a week just before Easter in March for dehydration and an esophageal stricture. I was unable to eat any type of soft food orally and began spitting up any water or liquid I drank. My new connection site ( where they hooked my esophagus up to my lower intestine) developed really bad scar tissue that closed the opening up to about 4mm. Since that time I have had to return to Duke hospital (5hrs away)once a week to have dilation's and stretching to get my esophagus to open up so I can begin to eat real food. This is done as an out patient procedure with a GI and anesthesia team. I am now up to about 12mm and can eat mashed potatoes, soups, and other super squishable foods. The goal is 15-18mm but each time I go in, the scare tissue begins to take over again! Errrr, so frustrating.  I head back for another stretching the end of this week and I meet with my main doctor on the 13th to evaluate this on going problem - I pray no more surgery. I was in the ER just this last Thurs. night for a kidney stone- OMG the pain was intense. I passed it this AM - thank you God! I was told I have a few more in my kidneys but not as large as this one was. This is a result of the surgery, dehydration, etc.  Big sigh............ I am just trying to keep my spirits up these days and be grateful for all the little positive changes. My energy is getting better and I am getting stronger everyday. I am also beginning to adjust to all the weight loss. I miss making my art. I feel very disconnected from it and I can't believe how slow I am moving when I do putz around in the studio. Patience is so difficult for me - the docs tell me "all in due time" 6 months to a year from now, I will be comfortable in my "new normal" I just want control as to what that so called "new normal" is gonna look like!!!! Wow! there it all is. What a negative sounding post! Yuck... but it is my truth and my reality for today. I will get better, I am getting better every day. I am alive and not fighting cancer or undergoing chemo! Thank you God