It has been a long time since I’ve updated everyone so this post is going to be a long one. Brace yourselves!
The last 3 months have been difficult to say the least. Between surgery, the holidays, travelling, and recovery I am happy to say that I am alive and am improving every day. We are thankful to have had so much support and love along the way from friends, family, and even strangers. Please know that our hearts are full and we are thankful for each of you.
Our stay in Houston was made special by many people. We had Christmas decorations in our apartment, we had family and friends visit, and we celebrated a quiet Christmas with Bouden, Adrian, the puppy and me.
I had an AMAZING care team at MD Anderson all the way from the surgeon down to the sweet man who brought me bullion to sip. I was incredibly impressed by the facility overall and the professionalism. The nurses were patient with educating us on what to expect and bringing warm blankets when I needed a little extra comfort. I could not be happier with the treatment I received.
We returned to Charleston on 12/29 with family, puppy, 7 carry-ons and 6 pieces of checked luggage. It was a very long day. Prior to leaving, I was removed from my pain medication due an antibiotic I was taking. I will just leave the rest up to imagination, but note to my fellow travelers: if ever you need one, a wheelchair will get you priority seating on Southwest.
The word from the doctors is that recovery will be around 6 months, give or take. I am one of 15 patients who have had chemo, multiple surgeries, and their stomach cavities burned with chemo twice (shake and bake), so recovery is going to be longer than others who have had only a gastrectomy and it’s difficult to know what to expect.
One unexpected side effect so far has been severe back pain. Whether from the hospital bed, surgery, tubes, digestion, or a combination, the doctor is unsure. Also, after being sedentary for so long, walking and standing is difficult. As of recently, I am able to walk about 4 blocks before wearing out (Yay!). Standing in place will require some more time but I’ve been seeing a chiropractor and have made huge improvements with walking, standing, and posture.
Part of my recovery is learning how to eat again and training my body to process foods in a new way. I have to stick to an eating schedule so my brain knows when to expect food and begin the digestion process. I am able to eat very small portions six times a day. This is mostly basic items like chicken, rice, pasta, protein drinks, bread, etc. but I’m starting to branch out into other foods like chicken fried steak (YUM!) and pizza (yum, but my stomach said, “no”.). I’m finding that it’s a trial-and-error process and that I can tolerate something like a PB&J one day, but the following day, the same thing can take me down for an hour while I recover. I have been assured by my dietitian at MD Anderson that this is part of the recovery and retraining process.
I am still using the feeding tube some nights to supplement my calories and hydration. Once I am able to consistently get enough food and liquid by mouth and maintain my weight, I can have the tube removed. I am told by my dietitian that I am on track to accomplishing this, but I’m mentally ready for this to happen sooner rather than later.
I have started back to work full-time from home. It has been great to get back into the swing of things and have a distraction from all of “this”. My work family has been incredibly supportive and if I haven’t mentioned it before, I couldn’t be in a better work environment. They’re tolerant of my time off, my forgetfulness, my many doctors appointments, and my sense of humor.
I will follow up with my local oncologist and have CT scans every three months, each of which will be nerve-wracking. I will be sure to post updates on these as they occur.
Please continue to send your thoughts, prayers, vibes, and love.
Love to all,