May 22nd, 2021 (Saturday) 

 Frustration is the biggest issue I am dealing with right now. The sense of not having things in my own control has finally arrived on my front door steps. And this is not sitting well with me, not at all. I am now seeing a domino effect happening that I need to nip in the bud or else, my sanity will be seriously questioned.

"This is all temporary" is what I hear all the time now.

Too many things are changing all at once and my head is spinning. This is why I have not written in awhile. All week was half filled of appointments with various doctors to help me stay in the same lane and to try not to let this all get to me. I still cannot say enough about the medical team I have been working with from the beginning. 

  The most noticeable changes have been the increase in my lack of patience and saying things that is out of character for me to say (almost offensive in a negative way which is not like me at all). Patience is something I took pride in and lately, I have been ashamed. 

(Picking up from last week)

May 30th, 2021.

  Time sure flies. Every time I want to write in my blog, I am set to do it, but then start to fall asleep. And then I tell myself, I'll write in it 'tomorrow'. No such luck. Sigh. The same thing happens the very next day.

  Oh! Last Tuesday, I had the most amazing and beautiful moment I experienced with another cancer patient at the cancer treatment center! I noticed a woman had tears streaming down her cheeks. A caregiver - not sure if she was a daughter or niece or what relationship she had with the patient - sat next to her and trying to talk things over with her. As my friend pushed me in my wheelchair (Used a wheelchair due to all the pain medication I am taking) from the radiation side of the lobby to head towards the chemo side of the lobby, our eyes locked as she and I shared a special moment of "We are WARRIORS and WE WILL get through this!" And then she winked at me. That is one special moment I will never forget.

  I could feel my mama right there telling me that we are in this together, too and that she would always be here with me in spirit. What I would give to get a hug from her right now. I loved her hugs.

  Earlier last week I had to go the ER due to my stepping on the feeding tube cord. No idea how long the cord was but the little bulb that helps to prevent infection popped out - not all the way, luckily. We made it just in time to the ER! Otherwise, we would have had to have the entire feeding tube redone completely. Thank goodness! And another new surgery would have put us quite a bit behind schedule on the treatment plan which we cannot afford. 

  Swallowing pills is still very difficult. Cutting then on the pill cutter hasn't seemed to work or we are not cutting small enough. So frustrating. I tried to swallow the pills with applesauce (and other soft foods) which worked at the beginning but not anymore. Sigh. Will keep figuring out what to do here. Just requested a smoothie. It went down at first but then the throat started to hurt again. This is no easy task to come up with a solution. However, I WILL find a way.

  I am still not able to eat solid foods - going on 4 months. Well, I did try a piece of toast a week or so ago but it was a VERY SMALL piece. It went down okay which was very surprising. But, no other solid food since then. Crossing my fingers that will change...someday down the road.

  I have not ventured out much, except to do doctor's appointments or meeting up with the medical team for my chemo and radiation. I get so tired by the end of the week that I don't have energy to do much to do anything else but sleep. I am hardly even on any social media which is unlike me. I just don't want to make any typos while on social media. So, I might as well stay off of it as much as possible to avoid the mistakes. This saddens me big time as I feel I am missing out on outings with my family and friends or connecting with them on social media. 

  We are having a very quiet Memorial Day BBQ with my family but told them to please excuse me if I have to leave the backyard to go to bed with the heating pad which I have to nearly use everyday as my back aches like h*ll. 

  During the periodic small pity party I throw myself, I know that life could be worse and that it is still beautiful. For instance, there is this plant that I could not for the life of me figure which one it is and finally got a photo of it when it started to blossom. I have an app on my phone that helps identify plants and flowers. And, when I saw the blossoms and the fragrance, I was in luck in finding out what plant it is! Jasminum Polyanthum (Pink Jasmine)! https://www.monrovia.com/pink-jasmine.html

  I clearly remember now buying it after I saw this plant out on one of my photography sessions. I just HAD to have it to help build up my wildlife habitat garden in my backyard. Glad I remembered the app to help me identify it. 

  One of my brothers brought a beautiful planter for my garden! It fits in nicely with the rest of the lovely garden! Wouldn't you agree? 

Nature has had a profound impact on my attitude in life. I always remember to take to time to absorb nature because it sure is medicinal! 

With much love and gratitude,

Liennie

  

 

 May 16th, 2021 (Sunday)

  The end of the week and weekend with the warm temperatures upper 60's/mid 70's made it difficult to be comfortable. But, I will definitely take over being at home then at the hospital. Let's just say this lady here does not do well in hot weather, in addition to fighting cancer. I am soooo tired.

  My schedule has become like being an actual patient in the hospital again (and again!). Every 4 hours, I take pain medication of one sort and then' flush' out the feeding tube. These are well-orchestrated and precise for sanitation purposes. Hands MUST BE washed at all times when doing these 4 hour increments of scheduling. I like to pretend I am in 'Grey's Anatomy'  (Seattle is the featured location in the show!) or some medical show. I wish. Or do I?? Hmmm.

 There are so many support groups and a lot of sharing that either depresses me further or unknowingly uplifts me (even for a few mere minutes). It is amazing how many types of sharing, types of cancer and etc. Just AMAZING. How we all deal with each cancer that we are challenged with truly brings out the opportunity to find ways to deal with them in a positive way, in my humble opinion. 

 I blurted out today to Damon "LIFE isn't fair!". His response was "Why, yes m'dear that is so TRUE." It is not up to me to say that life has to be fair. Life doesn't work that way. We DEAL with it the best we can. This is not the time to wallow in my own pity or request it be fair. I keep fighting this daily, to be honest. WHO am I to ask that life be fair? As I read what I have just written, I should be ashamed of myself. I talk the talk but not walk the walk which is not how I want to be or be a reflection of the opposite of my positiveness. Back up and press START OVER.

 I am so glad I can be honest with you all and own up to my words that need to be corrected. You deserve HONESTY from me. I have messed up too many relationships because of my bullish*t and have had to clean up my messes & friendships over the years, decades and etc.

 The photos I am including in this entry are ones I want to share with you all so that you have an idea of what needs to be changed every 4 hours. As much I dread it, the process has to be done or I will not heal. I can't complain about it or it will not heal. Team work has been crucial. And I can actually do some of the flushing on my own! 

Damon has been getting the hang of the routine! Thank you, Damon!!

This is the last thing I see before I fall asleep. Every night.

PLEASE...I apologize for being repetitive on my subject matter in each blog entry but the pain medication is taking affect on my typing here. So, I better wrap up this entry soon. 

  When I am able to write in my blog, it's because I have access to my computer which is so much better for my typing. I love writing and typing. I hope to start sooner on the typing but we will see how I am feeling after the radiation tomorrow. I love the fact that I am inside cooling off with the fan running and looking outside at the hot weather. Stepped outside a few times this afternoon. OH MY! It's quite warm. Feeling great but feel bad for those who don't have access to fans or shaded areas around their house to keep the inside cooled down.

 Thank you so much for being a part of this crazy but important journey. You are all so special to me. I love you all more...each and everyday.

With love and much gratitude! 💗 

Liennie

This is how I honestly feel every night as it hurts to see my loved ones care for me and watch me in such excruciating pain. 😢 But, I will prevail.

 May 11th, 2021 (Tuesday)

     It has been a few days that a new entry has been written. A lot things have happened and I will do my best not to bore <yawn> you! Look forward to sharing them with you all.

On May 7th, 2021 (Friday) at 7:35pm, I had a surgery to put a J feeding tube into my stomach due to not gaining weight as we get ready to fight this Esophageal cancer through radiation and chemotherapy starting the following Tuesday. I went from 126 lbs (9 stones in UK) this past January (2021) down to 102lbs (this month in May 2021). In order to receive radiation and chemotherapy, I had to increase my weight to be able to handle the rigorous treatment schedule.

As I was wheeled into the surgery room, there must have been nearly a dozen people dressed in surgical gear in the room. I laughed aloud and (a repeat gratitude joke with a different set of doctors & staff) said “Thank you all for being here per my memo and on time for my party!” Lots of laughter could be heard as the countdown from the anesthesiologist began “...and that’s one, two, three, four!” I am out like a light!

  Finally woke up from my deep sleep, my stomach was hurting like hell! It felt like someone took a part of the stomach and stomped on it and then gave it good slap before putting it back inside. The last nurse in charge of me was a sweetheart and took great care of me. We had good hearty chats and laughter. It made me wonder if there should be a clause on their job contract stating “Do not make client laugh after any surgery." because each time I laughed, my stomach hurt even worse...for a few minutes only. Thank goodness!

To Be Continued...

May 12th, 2021 (Wednesday)

  The food was terrible there at the hospital. OH WAIT! I had a feeding tube placed in the stomach. What was I thinking?! LOL I had not eaten (liquid diet) since 10pm the night before. Dang, was I hungry!! I could only have ice chips to last until they gave me some apple sauce. Woot hoot! They didn’t want to take a chance that if I ate something and it didn’t agree with my stomach, I would most likely vomit.

  They released me FINALLY around 5pm(ish). I cannot stand staying in hospitals. NO FUN. However, most of the nurses and staff were wonderful. So, there is that! OH! And they had CNN! I was a happy patient. I never got into politics until just before the former president was elected in 2016. But, we won't discuss politics here. 😏 I prefer listening to piano music to be honest. I like to have background noise when I turn the TV on wherever I am, especially at home. That helps me to shut out the negative stuff going on in this world. Too much is going on that is not good for me to watch but instead focus on healing through this challenge with more positivity.

  The minute I got home, I went straight to my wildlife habitat garden in the back of the house as I so desperately needed fresh air and to see what has grown (yep even one day can make a difference in plants!). It was soooooo wonderful to be home and spend time with Damon & Amanda. 

  That Amanda is a GEM and has been doing more than I ever dreamed she would be doing. SHE needs to be awarded the Medal of Freedom or some medal recognizing a person going over and beyond the call of duty, in my humble opinion. She is meticulous on organizing my medication information, on top of when I should be administered taking my medications and etc. My admiration for her went up a few notches. That degree in Molecular Cellular Developmental Biology has paid off and MORE! 😀 It is fun to watch her interact with the doctors (oncologist, thoracic and nurses) who are delighted that she knows quite a bit in the medical field and language. It all sounded Greek to me! 😂

  May 11th, 2021 (Monday) was my blood draw day which will be on my schedule for each Monday for the next 6 weeks. Then Tuesdays, I have both radiation and chemotherapy (lasts about 2-3 hours). Radiation yesterday was a little over an hour as there were things to go over and to get set up for the process. Radiation was a little claustrophobic but I am working on that small challenge. I told Amanda that to get through the radiation,  I think about the fun times with her and her brother, Jack when they were toddlers when we were living in Greenlake. There were some great memories there. I choose to think about positive past times to distract myself for the 15 minutes of radiation which hurt somewhat. As they say, "No pain, no gain". Right?! 

  Chemotherapy was not at all what I expected. I have never really paid attention to any of the scenes in movies or tv shows where they show a person going through the procedure of receiving chemo. There aren't going to be much of my veins left, if they don't put a portal in soon as they are always hooking me up to IVs. I used to be scared of needles but am getting over it as it happens so often that I just go with the flow of things now. I used to even brag about how healthy my veins were. Not so much bragging now. Sigh.

  The oncologist said they will give me some Benadryl to counter any allergies that might happen when receiving the chemo. I warned them that I will be asleep for most of the procedure. Well, after I awoke from the Benadryl, I apparently, missed out on some visitors that were scheduled to come and see me to ask how am I doing. Thank goodness Amanda was there as they could talk to her about my condition and ask how I was doing. I did awake to barely make sense of what was said or what I could answer for them. Next week will be the last of the Benadryl. They just want to take every precaution, especially any allergies that may appear. I am not a fan of Benadryl as it makes me sleepy. Very sleepy.

  I have to say yesterday was a very productive day as I went straight to my garden the second we got home after a full day at Northwest Hospital where I get the radiation, chemotherapy and other medical care. My love for my garden has given me peace and joy when I need them most. It is so exhilarating to garden or simply sit in a chair and listen to the birds chirp and the water fountains. 

  I would like to say I slept like a log but that didn't happen as having a tube stuck in your stomach is very uncomfortable and annoying. I cannot sleep on my back any longer and can only sleep on one side right now due to the fact that sleeping on top of the left side where the tube is would hurt the tube or make it move which would then hurt me. But, this is only temporary as I say and others remind me of the same.

  Today, May 12th, I had radiation this morning. I thought we were going to be late! It's because I had a bowel movement FINALLY within 10 minutes before leaving our house to get to the radiation appointment which is a 20-30 minute drive depending on traffic. I know. I know that sounds gross. But, it is HUGE to my doctors and me! I have been constipated since last Thursday due to the amount of pain medication I take. That's what pain medication does to the bowel. I have never liked Prune juice but know I have to take it to keep my bowels going naturally and continue to stay on the healthy side of life. So, I have had to drink that crap (sorry if I offended those who like that drink) and take some laxatives to get the job done! It worked. This is going to be an ongoing thing. FUN times! 😉

  Today was, actually, fun at radiation and when I left I did a little dance on my way out. The staff was just cracking up. AND there wasn't any music playing! LOL

  Just wanted to add that my food consumption has decreased since having this feeding tube put in me. I figured that would suffice for the nutrients and calories. However, I need to get back to eating some additional food outside of the feeding tube to boost up my energy even more. And I was able to take a short walk with Amanda late in the afternoon. A very short one. Sadly. I think I was just doing a little too much thinking I have all this energy to get gardening done, dishes (just a few) and etc. I better listen to my body and rest which is also a part of healing. Right?

  Two more days of radiation and I have the weekend off until Monday!! Yay!!!

  Thank you all for being a part of my journey. You have no idea how much each of you mean to me. Truly. 

When you have your best friend with you (that would be my husband, Damon) to go through this journey with you, life is truly still beautiful. 💕

  Guess what I did when I got home from radiation today?? 😉

With love and gratitude,

Liennie 💗

  

  

  

May 6th, 2021

(A beautiful bouquet of flowers from a lovely family friend! Thank you!)

   Tonight’s blog entry is going to be very short. The true beginning of this esophageal cancer journey starts at 3:30am tomorrow morning as I prepare for the J feeding tube to be placed on the left side of my stomach to help maintain nutrition to gain weight.

  Everything will fall into place (fingers crossed and prayers dare answered daily🙏). 

  I thank you all from the bottom of my heart for your beautiful personal cards you have sent, voice messages in my voice mail box, gifts sent via mail/UPS/Amazon/etc, prayers and positive thoughts have touched me immensely.

  Please be kind and compassionate with one another. You are all beautiful...inside and out. 😀❤️

With much love and gratitude,

Liennie! ❤️

May 5th, 2021

(When I need a little brightening up in my life, I just look to the Seattle Great Wheel down at the Seattle waterfront!)

  Just experienced some great discomfort while trying to swallow the newest pain medication- a small pill that cannot be cut in half or any smaller to make it easier to go down my throat. Per instructions: Swallow whole. Do not chew, break, crush or dissolve before swallowing. Doing these things can cause very bad side effects and death. So whole pill it is with small spoonfuls of yummy (it really is!) applesauce!

  Thank goodness Amanda was in the next room. I was able to ask her to come into my bedroom. Had to text her as calling out for her loudly would have awaken Damon from his deep slumber.

  This is my first day with the new medication (hopefully, this will be the last change in pain medication 🤞). It was suggested that I mix the pill in with applesauce. I must have put too much applesauce on the spoon as the pill just sat there in my throat causing aggravating pain. Dang! That hurt like heck!!!

  It seems to be a daily thing of crying either due to pain or the embarrassment of putting my family through this horrible experience of still not being able to swallow solid foods which has caused unbearable pain. Poor Amanda has had to hear me repeatedly say I just want to die so that you all don’t have to watch me suffer in pain not knowing how to ease my different levels of pain.

  Thank you to Amanda and my family for being so supportive, empathetic, kind and patient with me. 🙏❤️

  Let’s move onto the latest update on the treatment plan with the chemotherapy and radiation.

  Tomorrow I go in for another Covid-19 test as the last test is too far out for the upcoming chemo and radiation starting next Monday. Later in the evening, we will get a call from the anesthesiologist to confirm the J feeding tube procedure which is tentatively scheduled for 6am Friday morning. Did they not get the memo that I am NOT a morning person?!! Sigh. Then I will stay overnight to be monitored and to make sure nothing leaks from the tube or any other complications that might arise.

  Radiation is first on the schedule and then the 3 hour chemotherapy session follows directly afterwards.

  That’s it for the chemotherapy and radiation update. If there are any changes, I promise to let you all know!

   Today’s diet consisted of Ensure, applesauce, one of Amanda’s delicious smoothies and a small cup of some yummy creamy broccoli and cheese soup! Not much but hopefully that will change soon once I have some chemo and radiation under my belt according to my oncologist doctor. 😀 

Time to wipe my eyes and get ready fo some decent night of rest.

  Thank you all again for reading my journal and being a part of  this journey with me!

With lots of love and gratitude... ❤️🙏

Liennie 

(This is one of my favorite downtown Seattle photos!)

 

May 3rd, 2021

  An in-depth discussion with the surgeon this past Friday has put the treatment plan at a temporary postponement due to now scheduling a J feeding tube that needs to be inside me before chemo and radiation both begin.

  People with esophageal cancer often have already lost weight before the cancer was found. Treatments such as chemo, radiation, and chemoradiation can cause painful sores in the mouth and throat. These can make it hard to eat well enough to get good nutrition, making weight loss worse. 

Some people with esophageal cancer may need to have a feeding tube, usually called a jejunostomy tube (or J-tube), put in place before treatment. This is done through a small hole in the skin over the abdomen during a minor operation. A J-tube lets liquid nutrition be put directly into the small intestine to prevent further weight loss and improve nutrition. This can make treatment easier to tolerate. Less often, the tube is placed into the stomach instead. This is known as a gastrostomy tubeor G-tube.

A feeding tube can easily be removed when it's no longer needed.

(Reference:  https://www.cancer.org/cancer/esophagus-cancer/treating/palliative-therapy.html)

    There are still appointments with the pain management team and the nutritionist team scheduled for tomorrow. Once all departments meet and agree on the date to start with both chemo and radiation, we will either start this Wednesday or next Tuesday. I am so grateful to have both Damon and Amanda at important meetings like one we had today. We all need to be on the same page and each of us have a complete understanding what is on the plate before we make the important decision to begin.

  As much as the anxiety, frustration and other physical pain I am still experiencing, overall I feel confident with our esophageal cancer team. Every individual facing various cancer challenges has to know we are not alone and we experience each situation differently. From the outside, it can be especially hard and agonizing to watch a loved one suffer so much and feel that time is of the essence while asking why aren’t things getting done RIGHT NOW. It is important to let your faith be the one to guide you in life where you need to be. 

  I choose to be calm and reflective throughout this journey. And I continue to eat as much as I can when I can. 🙏

  I will continue to keep you all posted. Thank you for all your unconditional love & support. I am just so blessed everyday to have you all in my life right now. 🙏❤️

With much love,

Lien 🙏❤️