And Then the Morning Comes...

 

Happy Easter Everyone! He has Risen!!!

Whew! guys it has been quite the ride. Sorry for my silence during this part of the journey. I knew the surgery and the recovery were going to be intense, but I truthfully didn't have any tangible way to gauge just HOW much and what that would look or feel like as I have never been through anything even remotely like this to compare it against. 

It was an experience. 

And...thanks to pain medication lol, mostly a blur. I cannot believe that I am over a month out on the OTHER side of the surgery at this point. 

I am so humbled and grateful for all of the support and encouragement by so many of you. It has been easier to just allow myself the space and time to heal knowing that my family is being taken care of. 

I just had my first outpatient follow up this week and got some information on the pathology of my tumor and know a bit more about how my recovery is going and what my coming next steps in this journey will be. 

1. Surgery Overall While, I thought I had handled everything fairly well (and I did), it seems the docs have decided my experience was "complex" and "challenging" This has been liberating for me because I was starting to feel a bit like a wuss for STILL feeling weak and not yet back up to my usual self. The doctor assured me that given what all I had been through and all the complex issues that were encountered, I am right where he would want me to be and heading in the right direction. 

2. Oxygen- I came home on 2 liters of continuous oxygen because I had some effusion (fluid) around my lungs and my lungs were partially collapsed. The right lung issues have completely resolved but my left side is still moderately affected. The doctor thinks my body will continue to reabsorb the fluid and he wants me to work with my home health nurse to start weaning off of daytime oxygen.

3. Eating/Nutrition- During my surgery, they were not able to place a feeding tube. This is usually how one gets nutrition while the esophagectomy incisions heal to allow the upper digestive system to rest. The backup plan they decided to go with in the hospital was to attempt TPN feedings. For those that don't know, that is IV nutrition that is formulated specifically for each individual using it. It was kind of interesting watching the process of how they decide what is mixed into the bag and at what ratio based on daily labs which measure all my electrolytes and minerals etc.. The downside of TPN is that there is a lot of dextrose (sugar) in it and well my blood sugar went crazy. For over a week I had to have finger sticks to check my blood sungar every hour and was given correction insulin at various units' multiple times a day. I have never required insulin in my entire life, so it was disconcerting to say the least. After a week and a half my medical team decided that TPN wasn't going to be a viable nutrition option for me outpatient. So, the decision was made to start me using my new digestive system several weeks early. I needed some form of nutrition after all. I did 24 hours on a clear liquid diet, then was moved to a soft mechanical diet and discharged the next day.

 What has followed has been a lot of trial and error here at home. I can eat/drink about a 1/4 of a cup in a sitting and the whole digestive process works a bit differently because the food doesn't spend as long in the digestive tract. The result of eating too much or eating the wrong foods is pain, nausea, dizziness, and other symptoms similar to someone who is lactose intolerant or has IBS. In addition, the surgery also removed the part of the stomach that closes to keep the food in the stomach. What that means is that I have to be careful not to aspirate. I have to be intentional about sitting up for several hours after eating before laying down AND laying down has to be at a 45-degree angle always. 

Physically, being sick after eating so very little has been frustrating and at times scary. However, this has also been one of the most mentally challenging aspects of recovery. Food has been so woven into my life. Celebrations include a meal, comfort is found in a meal, boredom or nervousness are diverted with food, emotions are equalized with a meal. Food can't ever serve that role in my life again, not that that was truly all healthy anyway. It has been a lot to think about and process. I'm looking forward to being able to be more mobile so I can find other outlets for some of the regulation and social interaction needs in my life. 

3. Mobility- I am still using a walker to walk. Not only am I just still a bit generally weak from the surgery and 16-day hospital stay but I also have been having numbness in my left thigh area. I have a physical therapist that is coming out to my house to work with me who seems to think it is an inflamed sciatic nerve. This could have been caused by sitting so long but also could be damage from the long surgery itself. They have given me some exercises to do and we will be monitoring it. They said we will know if it is permanent in about 6 months. Good news is that the leg is still strong structurally and the numbness is only the surface skin. I can still feel the muscle and can bear weight. 

4. Tutor pathology/Next steps- I got some more detailed information about the tutor at my follow up. Some of this I have already shared but pathology confirmed that we got all clear margins and all of the 50-60 lymph nodes along the esophagus that were removed tested negative for cancer. YAYY! Praise God!! They also did some tests and investigation on the tumor itself. They found that while it was mostly dead tissue from radiation and chemo there were a few microscopic areas with live cells. This they told me is pretty typical. Because they found live cells though the protocol is to do immunotherapy. Immunotherapy basically suits up your own immune system and targets it to seek out fast multiplying cells. Cancer cells are fast multiplying cells. Which type of immunotherapy drug I do and the regimen depends on some of the genetic markers of my specific tumor. The surgeon does not want to begin the immunotherapy though until after I am no longer requiring oxygen. 

So... specific prayer requests:

• That I am able to wean off of oxygen successfully and that my lung effusion(fluid) and partially collapsed areas heal completely. 
• That I am able to get more mobile and the feeling returns to my left leg and the pain in my lower back/sciatic nerve subsides. 
• That the transition back to work goes smooth
• That the doctors have wisdom as they lay out the next phase of this treatment to hopefully ensure I can remain cancer free!
• That I am able to get more used to my new nutrition needs and that my swallowing and meals continue to improve. 
• Above all though, please lift up prayers of praise because I am so very grateful for the progress that has been made and the comfort God has provided. He is Good ALL THE TIME!

Love you all!

Angel