Far Too Long – 1 year 11 month update

It has been far too long since I have provided an update for you all. So here it goes.

There have been a few things that I have noticed since my initial surgery, my voice is not what it used to be; I am unable to sing those lullabies to my my daughter, the national anthem, that catchy tune on the radio or yell or cheer or call my dog with any strength in my voice. I am still uncomfortable some nights on the wedge pillow for that necessary 30 degree angle, but it’s getting better and I have been getting a more restful sleep with the many pillows that now take up half the bed and annoy the daylights out of my spouse.

In December, I was finally able to stabilize my weight,  I was also able to start gaining weight. My weight finally increased by 8 lbs to a total of 112 lbs.

About 8 months after surgery and continuing into 2016, I started getting slight pains in my right side under my ribs. It would start hurting a bit after eating and go away shortly thereafter. Month over month the pains got worse. I thought it was nothing and didn’t mention it when I saw my surgeon in early April a couple days before my official 1 year post op date, at that appointment he gave me a conditional release. An “only when you need to come back” kind of release. Two weeks later I wound up in emergency in excruciating pain, with follow up for an ultra sound to find out what’s going on.

Results came back that I had gall stones. “YAY” I saw my surgeon again shortly after that and was scheduled for surgery #2 in early July. I had experienced a few more attacks between May and July and had been hospitalized again shortly before surgery on July 4.

I had a really difficult time pain wise with this surgery and more so than my TG. I got in many hours later than expected, it was completed laparoscopic and again just like the first one took longer to complete than normal but this was due to adhesions from my total gastrectomy. Even though it was supposed to be a “day surgery;” I spent the night in the hospital with severe nausea and pain. I continued to require pain medication for a few weeks after, which I wasn’t expecting as I thought having your stomach out was a way bigger deal on your body for pain wise. I went back to work after being off for 2 weeks and was only back to work for 4 days when I had an attack that required an ambulance trip to the hospital. I was in so much pain there was no relief, sitting, standing or laying down was awful. I couldn’t breathe and was in agony. Good thing they carry good pain medication in the ambulance!

I was in the hospital again for 5 days. Due to the lack of a stomach they were unable to go in and look at my bile ducts with an endoscopy so I was scheduled an MRI. This occurred on the 4th day of my hospital stay. Unfortunately, by this time there was nothing to see, but the assumption was that there was a left over stone that wound up in my common bile duct. It had blocked the duct and messed up my liver enzymes and made things a total mess for me.

I didn’t realize how terrible I actually felt until after my gall bladder was taken out. I was lethargic, cranky and sick/sore feeling nearly all the time because I was trying to gain weight and put some meat on my bones and eating a lot of fatty foods. All in part due to the lack of absorption of fat. Now things are much better, I am able to get a better nights sleep, and no more annoying pain. Plus I can eat fatty foods again (even though the absorption factor isn’t any better – if not worse.) It’s clearly not helping much, in four months after surgery #2, I had only gained back 3 lbs.

I know that my food intake calorie wise has not been great, I am going to have to start counting again. And with Halloween just passing I am eating a few too many of those little chocolate bars (along with enough protein to counteract the sugar.) Keeping on a strict diet for me is difficult as I am not a Sunday food prep person, or good at meal planning for the whole week. I want to eat healthier however, the expense of it all is hard to swallow (bad pun I know…)  I need child friendly meals, and things to shake it up a bit. Any recipes or cook books for low calorie and high protein meals that are simple and delicious I would appreciate.

I do know that in the last year I have gotten an intolerance to MSG (not that it’s very good for one anyways,) but I really miss Vietnamese food, eating McDonald’s (once in a blue), and Chinese food as well. Sometimes I indulge myself, but try not to eat too much to really upset my system; or not expect too much from myself either.

With this mutation that also causes Lobular Breast Cancer as well I have been going for mammograms and MRIs every 6 months to keep an eye on things. A month after my regular mammogram in December 2016, I had blood coming from my left nipple…great and there goes my nerves. It came on Sunday and I had it looked at Monday. My family doctor gave me that worried look so naturally I am freaking out on the inside. I had a ductography 2 times because the first wasn’t successful and there is a growth deep in the duct. Not great!! I met with the same surgeon that my Mom had at the beginning of March and am now scheduled for a ductography with blue dye so they know where to look when the open me up for the ductal excision later in the day on March 30. Good thing they move quick to make sure that they investigate what is causing the blockage. My pre-op call was this afternoon, but it hasn’t helped keep me sane. I am now 1 week away from my third surgery in 2 years…yay more scars, possibly more pain and more healing.

When can this SH*T be over with, I am getting really tired of being tired. I am tired of my body throwing me curve balls and not letting me go on with things. Here’s to hoping (crossed fingers, toes and everything else) that it’s benign and nothing to be concerned about! (Update to follow) hopefully sooner rather than later… I will also try and touch on my food intake and hopefully I can find some ideas to make things a bit easier for me.

Thanks for listening/reading! Have yourselves a fabulous evening.