August 27th, 2021    

It's been over a month since my last entry. Life has been busy with doctors appointments, ER visits, medicine schedule, finding peace in nature, enjoying some visitors and etc. And I have been going through a lot with physical pain along with emotional pain. 

Not sure where to begin.

For awhile I was going to the doctor's offices for follow ups on this Esophageal cancer and dealing with one feeding tube problem after another. It's been frustrating that the most recent difficulty has my oncologist and surgeon stumped of not knowing what is going on with my feeding tube. There is pain around the hole where the feeding tube goes into my stomach. And it has been affecting my hip joint and my thigh on the left leg. It hurts so much that I have had to increase my dosage with Oxycodone. I was starting to wean off of the Oxycodone. Fortunately, my pain management doctor has been so supportive and stressed that she won't let me get addicted to any severe level. Thank goodness!!

I am going for (I hope it's the last time) a procedure this coming Monday that sounds promising. I will keep you all posted. I promise.

ER has not been my best friend. There have been 3 ER visits all related to the feeding tube which is still causing me pain. The last two had me in a bare room with just the bed and a sink. It was weird to be in that exact room twice. I didn't realize the second ER visit time that the beds were full of patients with COVID 19. I was not happy at the beginning of the visit (who is ever happy going to the ER?) but then understood why I was put into the back room. They were concerned with me being a cancer patient. I cannot afford, medically, to get COVID 19. The last visit ended up having a temporary feeding tube put into me until the Radiology Department would put a permanent feeding tube.

I was able to get the permanent feeding tube soon after the ER visit. Unfortunately, I have had problems with this one soon after it was placed in me as described in the first paragraph above. Fortunately, I have a procedure appointment with Radiology to see what they can do before replacing the feeding tube again. Let's pray that they find the answer and put the replacement feeding tube will be last (having a feeling that won't be the case, but still crossing my fingers and praying. In the meanwhile, I am on another medication (makes me sleepy) for nerve tissue inflammation that was seen in the last CT scan. Fun times!

The photo below is what we are dealing with by the hole of the feeding tube. Photo was taken last night (08/26/2021).

When I visited my oncologist towards the end of last month before my scheduled surgery that was supposed to be on August 9th, 2021, I received some bad news.

I am not good with words when it comes to writing about the Esophageal cancer. Therefore I am copying and pasting what my daughter shared with me from that visit:

"Ever since I had pneumonia I have had a consistent cough that has not gone away (along with phlegm). During an appointment with my surgeon to prep me for my surgery, he was very concerned by this cough and ordered a swallow test. The swallowing test involved drinking contrast while the doctor reviewed it his computer. This is what happens to liquids as I swallow. They that I aspirated the liquid and after further review they found a small hole between my esophagus and my trachea (this is called a tracheoesophageal fistula). The hole causes anything I swallow to enter my lungs. This fistula was likely created when my tumor began to shrink from the cancer treatment and left behind a hole.

This hole unfortunately means that I can't move forward with the surgery to remove the section of my esophagus where the tumor is located. The area is now too fragile and it is also risky to put me under anesthesia. 

"Ever since I had pneumonia I have had a consistent cough that has not gone away (along with phlegm). During an appointment with my surgeon to prep me for my surgery, he was very concerned by this cough and ordered a swallow test. The swallowing test involved drinking contrast while the doctor reviewed it his computer. 

This type of hole is not curable, but we have two options moving forward that the surgeon outlined. Option 1 is we can have a stent put in, which is a small piece of metal placed in the hole, and the metal expands to fill the space allowing me to swallow like normal again. However, the surgeon cautioned us that since the metal expands to fit, it will cause the hole to become larger which could cause additional fistula(s) in the future. He could not tell us for how long this stent would last as the patients he treats with stents are usually cases of advanced cancer - where they only have a limited amount of time left to live, these patients die from their cancer before they can see how long the stent lasts. Since my tumor shrank from the treatment and has not spread - I'm not an advanced cancer patient so likely the stent will only be a temporary fix for me that could lead to long term, unfixable problems.

Option 2 is to do nothing. Which would mean that I would have to continue having nothing by mouth and staying on the feeding tube. I would also always be at risk for aspiration pneumonia (which is what put me in the hospital) and this cough that keeps me up at night will continue. 

It's a very difficult decision to make. My family and I are weighing all the options.

In terms of the cancer, the good news is my oncologist was happy with how much the cancer reacted to the treatment and it did not spread! Since I can't have surgery, we have another scan planned for a few months from now to see if there are any changes (the radiation still continues to work months after you finish treatment) and if there is still cancer left I can start immunotherapy. So there at least is some good news on this front!"

This is why I am not having my surgery, sadly and realistically. We are hoping that the fistula will heal so that we can go forward with the surgery. Or, I may not need it after all. Who knows? I just do what I am told and show up.

Surprisingly, I stay very busy throughout the day and evening to distract myself from the pain I am experiencing. I say "surprisingly" because I could easily do nothing but watch TV and pretend my food in the backpack is a bag of Bon Bons. 😉 Friends have asked me what have I been doing with my days. 

Well, I have naps quite often which I am not a fan of doing. It's the medications that make me that sleepy. There are things I have and want to do! I love taking my walks which has been 2-3 miles a day. But, due to my recent predicament with the feeding tube, I walk under 1 mile a day, sadly. 

However, I enjoy sitting in my recliner seat outside while watching/listening to my birds. It is so peaceful in my back garden, especially with the bird fountain. The back garden has become my sanctuary when I need peace and quiet. The birds chirping away and chasing each other around are fun to watch. Watching the Hummingbirds, one at a time, drink from their feeders, bringing me such joy. But, it's not so fun to see one of the Hummingbirds being so territorial! I just love how nature brings me happiness and peace. I don't know what I would do without it!

There have been days lately where I get angry and frustrated that my life has completely changed and all I can do is go with the flow. Those feelings are subsiding as I am again re-adjusting my attitude towards life now. If I continue with those feelings, I know I will lash out on family. That is not what I want to do. SO, I retreat to my back garden or stay in my bedroom. I have been spending time alone quite a bit, although I have had a few friends come to visit.  I am just too embarrassed to have visitors over as I have to spit up my phlegm into my red plastic cup (no, not the Solo red cups! lol) a lot. I don't want my family and friends to feel uncomfortable watching me as we talk nor annoy anyone. Talking on the cell phone is limited, too, as I start to cough a lot 10 minutes into the call. I wonder if that is God's way of saying 'wrap it up on the phone call before you REALLY drive your family and friends crazy with your coughing, dear!" LOL 😂

I feel bad that I have not sent thank you notes to all who have sent gifts. There is NO excuse. Please accept my apologies. I was raised to do thank you notes. Please know they will be coming in the mail to you! 

I will continue to say that I cannot thank my family, dear friends and my wonderful group of supporters on my photography page for their kindness, caring and support throughout this journey. You all make it possible for me to be all the more grateful for what I do have and not think about what I don't have. 

Life is too short and it truly is still beautiful. 💗

I am enclosing some photos that I have taken around my neighborhood, flowers in my house and in my back garden. There will be ones you may recognize from my Facebook page. But, for those who have not seen them, please enjoy (and again for those who have already seen them!)!

Wishing you all a beautiful weekend. 

Love, 

Lien 💗