Follow Up, Sadness, Twinges of Guilt, and Surgery again?

So, its 4am and I am up at this crazy hour because at 2am I woke up with awful reflux and had inhaled a bit of the acid. What followed was over an hour of coughing and just being plain ol' uncomfortable. Once I saw 3:30am roll around I decided I would feel more miserable if I tried to sleep until my 5am alarm (heading back to Charleston for a surgeon appointment this am) than if I just bucked up and kept my tired eyes open for the rest of the night.  Thankfully Paul is driving so if I get sleepy on the way, I can take off my "backseat driver" hat and take a nap.

Today's appointment is my 2 month follow up from the big Esophagectomy surgery. For those wondering this is what they did. The blue part is what they took out and the third picture is what my new digestion system looks like. Crazy what modern medicine can do these days. 

We will be discussing my one still open, slow healing surgical incision wound (which is actually looking a million times better than it once was), medicines to alleviate/control my uncomfortable reflux, weaning all the way off of the home O2 (I am down to 1 liter and go extended periods without it when I am not over exerting), and figure out the timeline of the next plans for immunotherapy to start. 

Immunotherapy is basically a treatment that uses my own body's immune system to fight any left over cancer that might be floating around in my system trying to take hold. When I had my surgery they tested the removed tumor and figured out all about, how it replicates, what proteins it was using, and noted its unique genetic markers. Then they pair me up with a immunotherapy drug that will target my specific tumor and markers. I don't know much about it all specifically except that my cancer is HER2 Positive. That is a specific protein that is also found in breast cancer often. In Esophageal cancer only 1 in 5 of the tumors is HER2 positive. It does mean my tumor is more aggressive and can potentially spread fast. However, because it is found in breast cancers and there have been a lot of breast cancer research, it is a benefit treatment wise because there is a specific immunotherapy drug that is said to block the replication of most?/many HER2 positive tumors.  I will know more about when and how often/how long I will be receiving this next step of treatment hopefully after today.

The last reason/newest reason for the appointment today is to maybe have a second outpatient surgery this afternoon on my esophagus to further stretch it and prevent it from reclosing. I am not sure but think this might be a placement of a stent. I will know for sure if that is happening when I get there though it is likely because they told me to come there fasting except for water to take morning meds.. I did mess that up when I woke up this morning at 2 and was choking, I drank water, but I think that should be ok. We will see. 

Now for where my head has been...

As far as the surgery and appointment today, I am just stepping through it. I am nervous a bit but it is kind of dulled which I am grateful for. Only way through this is to actually take each step ahead of me one at a time so what choice do I really have but to keep moving forward? 

Emotionally I have been all over the place. I have been having some grief over the loss of who I was. I know and I am very grateful to be dare I say cancer free...or possibly on my way there.  I feel guilty even pausing for a minute to whine about what I've lost compared to what I have potentially gained. The loss I am grieving is profound though. I miss naively feeling like I have unlimited time and not feeling this heaviness when I am in conversations about what I want to do next year, in five years, down the road...I feel like a rug got pulled out from under me last year when I was diagnosed...just when I was taking a breath from finishing raising most of the kids, starting to plan with Paul about what we wanted to do and travel to see "once the kids all grew up" "Once we paid off the credit debt" "once we...this or that" The blinders are off now. I know the truth about how finite time is and I dont know how to day dream about the future anymore. 

I also grieve the loss of some of my identity, albeit not so healthy, but I used to emotionally regulate with food. Food was also the center point of celebration, community gatherings, loss/grief. Cooking comfort foods, making big dinners to feed an army of smiling faces and ensuring they had full bellies and content hearts. I know eventually I will be ok and will find new ways to love on myself away from a table and will be ultimately better for it, but *stomps feet* It is dang hard to break a generational cycle and I'm old and was feeling pretty set in my ways at this point. New habits, even good ones are scary. 

Another part of my identity that is different is my stamina. I am more tired easier. I rebound slower. I have struggled with being able to return to work at my full capacity. I miss the kiddos I work with and want to get back to not only working but also being more present in my own family life. I want to be a Nana more consistently, a wife, a mother, a sister, a friend. I am tired alot...except for tonight when I have decided to balk at the night sky in defiance of course lol

There has also been twinges of guilt. Early on in this journey I joined a esophageal cancer fb support group. It was nice to know I wasn't alone and to hear stories of what to expect, what to ask my doctor team, and just be with people in conversation who know firsthand about this. I befriended several people and one by one tragically they have (all but one) lost their battles with this cancer. They fought just as hard or harder than me and wanted a cure to this awful thing and they aren't here anymore...but I am. I don't understand it all. I never will. I miss their talks and the potential of their happy endings. It gave me hope and I know that they had a whole slew of friends and family who loved them just as much as you all love me. It makes me sad... and scared. 

Lastly, I have had a heaviness in how this all has impacted my closest family that I live with and near. So many things I have missed out on or asked them to miss out on doing or experiencing because my immune system has been so compromised. Some have been more vocal about it than others. It is a balance and I am trying my best to navigate it to the best of my ability. Part of the issue is being more isolated and missing things. Another part of the issue is the changes in our family life dynamics because of the loss of so much income. Ive had to say no to so many things. My mama ad grandmama heart hurts. 

Full disclosure, I just wrote and rewrote this next paragraph a half dozen times because I feel guilty stating where my worries, hurts, fears, and frustrations are. I feel like who am I to complain. I should be grateful and somehow me in any way being honest with the raw parts might diminish my gratitude and thankfulness. Know what though....

It doesn't work like that. God doesn't look down on us for admitting our vulnerabilities, fears, and short comings. I can lay this here in all its honesty just as it is and it doesn't detract from the grace and awesomeness of God and his walk alongside me in this journey. 

because...

and. then. God. 

I was blindsided by this diagnosis....and. then. God...

I have been scared...and. then. God...

I have been weary...and. then God...

Some people lost their battles..and. then. God...

I can sit even here, even in this, and walk step by step because I know that no matter the end of EACH AND EVERY sentence will always be 

and. then. God. 

And in that, I can hang my hat in hope.