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 💗

 July 11th, 2021

 The last two weeks have been not easy as I find myself getting frustrated that I can't eat nor have a bowel movement. Nice introduction to this entry. Right? I am doing everything that is asked of me to do. 

And at this moment, I am crying because I feel so lost and alone. Life is happening around me. Damon and the kids work during the day. And some nights, the kids go out to the lake or have friends over at their house. They have to live their lives.

 I did have a wonderful visit with my dear friend, Heidi, last week. And I got a hair trim from my wonderful friend, Julie! All is not that lonely.

 I am supposed to rest up for the big surgery on August 9th. For those who know me, I have a hard time staying still. I like to keep busy!  I find myself falling asleep on the couch a couple of times a day. I guess my body is telling me to sloooow down. 

Today was the first day I went out that didn't involve doctor's appointments. Damon wanted to go to the Pike Place Market to get a couple of bouquets of flowers to set up one of his new listings to get ready to sell. When we got to the Pike Place Market, the whiff of delicious food made me jealous of those enjoying the food. I have not had solid food in ages and am starting to get antsy of wanting to be able to eat and drink. I can't even drink water without gagging, except once or twice I was able to to take a sip and swallow. Even here at the house when the kids and Damon have dinner, I find myself going up to the backyard deck to get away from smelling the food and watching them eat. Soon, I have been told - 4 weeks post surgery. We shall see. Crossing my fingers. I have a list of food I want to eat as soon as I am able to swallow! 

I have been enjoying talking walks by myself or with Amanda/Kevin (Amanda's boyfriend)/Damon. My walks have gone from 2 to now 3 a day! It's been wonderful to get the exercise. Amanda commented today that I am walking a little faster than two weeks ago.

Saw these beautiful roses on one of my walks!

July 12th, 2021 (cont'd)...    

 My brother-in-law and his wife stopped over last night which is why I am picking up where I left off now.

 Tomorrow is the CT and PET scan appointment to determine how much of the cancer was shrunk from the chemotherapy and radiation treatment. This will help to decide what will be done for the big surgery scheduled on August 9th. I am nervous about the big surgery. But, I have faith that my guardian angel is watching over me and pray for the best.

 I have been keeping myself busy with a routine that I like to have so that I am not bored or lazy. It's only this past week that I feel energized but I make sure to pace myself.One thing I love is that I am down to ONE pain medication. I was on quite a few which has made me constipated and it's not going well for me in that department. I have heard that folks have had to go to the hospital to have that taken care of by surgery! NO! I don't need another hospital visit! Praying the laxatives I am on will do the trick! Sigh. Wish me luck on this, please! 

 My garden keeps me busy, too. And I am loving it! It's really grown into a lovely sanctuary where I go when I am feeling down. We need to refresh the supply of mulch for the backyard! Hope we can get that done before the surgery. If not, then it would be nice to have it done while I am in the hospital, in addition to painting my room as planned already. Crossing fingers everything gets done. 🤞

 Will write more after tomorrow's CT and PET scans.

 Sharing one of my favorite sunset photos since I have not been able to get out to take photos, especially the sunset ones.

With love and gratitude,

Lien 

 July 2, 2021. 

(It feels so good to have my hair shaved before the Pacific Northwest heatwave last week)

It has been awhile since I have written in the blog here. The combination of the prescribed pain medication and working through the side effects from chemo and radiation have taken a small toll on my energy level which explains my absence here on my blog.

I decided to shave all my hair off to honor all cancer survivors, those who are still fighting cancer (like me at this stage) and for those who lost their lives to cancer.  

Last Wednesday, I experienced 102.5F fever, nonstop coughing and asthma all at once. It turned out that I had pneumonia therefore the ER doctor on call suggested I stay at least three days to be monitored. It was SO hard to get any sleep in the hospital, especially with the heatwave we just experienced. Happily, I was discharged a week ago today, Saturday...two days before the actual heatwave to hit the Pacific NW. The air conditioning at the hospital was not cool enough. The hot air from outside was stronger than anticipated. I started to get hot...very hot and then got the chills. This gal here does not do well in hot weather!

There are hardly any veins in my arms for the next visit as they have all been tapped out from all the blood tests taken. Hopefully, when the scheduled August 9th surgery to get the rest of the cancer out that the veins can replenish the blood(?)...crossing fingers and prayers, too...please! Thank you, in advance.

Thank you to some great nurses and nurse assistants who took very good care of me and were able to get me through my stay at the hospital. There was a lot of bantering and laughter, albeit professionalism was still in tact. 

I did not want to stay a minute more as I felt so claustrophobic in the hospital room with hot and cold moments that were occurring which frustrated me to no end! When I was discharged on Sunday, the nurses were sad to see me go. I look forward to sending a surprise thank you card with some humor as we really got each other on that level. It was wonderful to interact with these nurses as we uplifted each other's spirits as the days wore on there. And the heat wasn't helping. 

Speaking of heat. One of Damon's friends gifted us a window air conditioner, recently. And the timing couldn't have been more perfect. So grateful to Damon's friend for the air conditioner. It has made my life more comfortable. It really doesn't take much to make me happy. Honest. Life is still beautiful. 

I am on antibiotics for the pneumonia. And we are down to oxycodone for pain relief. I have Damon or Amanda administer the medicine for me to hold me accountable. There have been concerns on the number of pain pills given to me. It feels good that oxycodone is THE only pain relief given to me as I did not want to end up being addicted to it. There is absolutely no need to take any other pain medication at this conjuncture. Addiction runs through me and I, also, cannot afford to get addicted to it. Life has given me a second chance. There is NO WAY that I am going to screw that up. I have worked too hard on my relationships with family and friends. I will fight to keep it that way.

A CT scan and PET scan are scheduled in the second week of this month. They will determine how much of the cancer they were able to kill. Then the surgery in August is set to go into the stomach area to remove the rest of the cancer (Esophageal) out of my body. They will go in there to patch up the stomach and Esophogus to keep the cancer out. That is what I got out of the conversation with my Oncologist. I will talk to the surgeon with more questions my daughter and I will have going into the appointment before the scheduled surgery.

I won't deny that I am scared. However, the support team I have through friends and family will help me to get through this next couple of months.

With much love and gratitude, 

Lien 🙏 

The sound of water flowing through this river gives me great peace.

 

 

June 13th, 2021

  I am so happy to share that this is the last week of chemo and radiation!!!

  When I first heard that the treatment of both chemo and radiation was going to be 6 weeks, I was feeling overwhelmed. I have helped a friend who is now in remission from breast cancer and I had a good idea what was to come. Except she didn't have a feeding tube placed in her like I have had to do to gain weight. I am one of those folks - 'eat to live'. I will not take food for granted, especially for my health. This is why I have a feeding tube. At first I was bothered with it but have finally adjust as I will have to continue to wear it at least a couple of months or more to make sure I don't have any complications. 

 My weigh fluctuates right now. For instance, before I found out the diagnosis for esophageal   I had gone from 126 lbs. down to 106 lbs in 2.5 months. Most recently, one day I would weigh in at 107lbs but went back down to 100 lbs. I weigh 103 lbs.And now it is worrisome if I continue to lose weight because it will affect the outcome of the rest of the treatment and major surgery which will keep me in the hospital for 6 nights to monitor me. UGH. I am not a fan of hospitals. Sigh.

 I was experiencing 7 days of vomiting this past week. It was weird that it was almost late evening when the nausea would come and make me me so miserable. This is why I wasn't on social media much. I kept trying to write in my blog here but I just felt like crap. I didn't have it in me to write.

 Thankfully, another anti-nausea pill was prescribed. It has made a world of a difference. I am able to sleep through the night. The nausea has reduced to almost nothing. And, I feel so much better for that adjustment. Speaking of drugs and the pain killers, Damon and Amanda (our daughter) monitor me when I take my medicine due to my addiction to alcohol. They trust me and that is a wonderful feeling. Thank you, Damon and Amanda,  for your hard work in keeping me on track with the medicine. Your support and unconditional love has given me strength to forge on and keep fighting! This sentiment, also, goes to all my family and friends.

 Chemo and radiation have wiped me out, physically and emotionally. The day after chemo finds me sleeping a lot. I need to rest up as much as possible to get ready for the major surgery later this summer.

 The most recent experience that has me finally to accept the the cancer and to adjust to whatever the doctors is that hair is falling out in clumps. At first I was mad but don't want to be that patient who dwells on 'woes is me'. This started last week. I can't afford to have negative thoughts. I want to get better! DANG IT! It's embarrassing that my hair falls out anytime and anywhere. Today was the first time I experienced hair falling on the kitchen sink. It freaked me out that the time of losing hair has arrived.

 I am going to make an appointment to shave my head completely. It's been fun doing research on hair scarves/hats for cancer patients/survivors. I am already embracing the bald head. If you have any suggestions for stores or organizations that make beautiful hair scarves/hats. I REFUSE to wear a wig. Too much sweating for me from past experience in wearing a few in school plays. No thank you. I will pass on the wigs. Thank you for any suggestions!

 One the chemo/radiation are done, I am SO looking forward to getting back out and about to take some photos. Serious photography withdrawals here - sigh. I received a new Nikon camera that I have not been able to get it set up. This has to be done because I am one of the worst procrastinators.

 My bedroom will be finally painted. There was a conflict of scheduling in getting it painted. I simply cannot wait to showcase and appreciate the beautiful photos that many KOMO#SoNorthwest Legion of Zoom on Facebook (here is the link - https://www.facebook.com/groups/1454064118012123). I look forward to making another sanctuary here. 

 The photos (some wonderfully framed and metal) are going to add a peaceful and tranquil ambience in my bedroom where I will be spending some time after they surgery. Thank you the members who gifted me their photos! I am just giddy! 

 Looking froward to ringing that bell to mark my milestone of finishing my treatment!

 Sending you all much love, smiles and appreciation. Thank you for continuing for being the positive in my life. I couldn't get through this without you all. I love you all!

Have a wonderful and safe week ahead.

With much love and gratitude,

Lien

 

 

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 🙏❤️

April 25th, 2021

(This headlight with the eyelashes cracked me up every time I would see this out on my walk in Shoreline - the simple things that makes me appreciate life all the more!)

  This Esophageal cancer is the third life changing event that has made a huge and permanent impact in my life.

  The first one (not by choice) was being adopted by parents in America at the age of 4. My adoptive father had 5 boys of his own from his first marriage. My adoptive mother wanted to even up the family by adopting 5 girls from Vietnam. I kid you not! We girls were adopted at different times. However, one of my sisters (not biological) was brought to the United States when I came here in 1970 and we were adopted at the same time. Our three other sisters were not biological, too.

  The second one (by choice) was getting sober on October 6th, 2009. As I go into my 12th year of (alcohol) sobriety, I think about how my life has drastically changed for the better. Had I not gotten sober in 2009, I promise you this...I would not be here writing this blog. I would have died from Cirrhosis of the liver.  I was pretty much writing my own death sentence at the rate I was drinking. The 24/7 drinking was getting out of hand. I am so thankful to finally get sober. Unfortunately, it took me to hit rock bottom (no one was hurt in any physical capacity - unbearable to think had that been the case) to realize that I HAD TO get sober.

  The third one (not by choice) is the situation I am in right now with the Esophageal cancer. Diagnosed on March 29th, 2021, this has been THE hardest life changing experience I have ever faced. I found this poem which is so appropriate for how we really need this daily reminder that each moment is indeed precious; a time to, especially, hug your loved ones when physically able AND to say "I love you" to those we love dearly - every chance we can get.

Each Moment Is Precious

by Pat A. Fleming

Live in the moment,

Just take it all in.
Pay attention to everything,
Right there and right then.

Don’t let your mind wander
To what’s coming next.
Cherish this moment
And give it your best.

Don’t let tomorrow
Make you rush through today,
Or too many great moments
Will just go to waste.

And the person you’re with,
In that moment you share,
Give them all of your focus;
Be totally there.

Laugh till it hurts,
Let the tears drop.
Fill up each moment
With all that you’ve got.

Don’t miss the details;
The lesson is there.
Don’t get complacent;
Stay sharp and aware.

It can take but a moment
To change your life’s path.
And once it ticks by,
There is no going back.

In just 60 seconds,
You may make a new friend.
Find your true love,
Or see a life start or end.

You become who you are
In those moments you live.
And the growth’s not in taking
But in how much you give.

Life is just moments,
So precious and few.
Whether valued or squandered,
It’s all up to you!

  Oh my goodness, I thought getting sober was tough. 

  Food has been one of the biggest changes and challenges in this journey. I haven't been able to eat solid food for over 2 months now. It has been reduced to just nearly an all liquid diet of Ensure (chocolate), drinkable yogurt and lots of Amanda's delicious smoothies! I ventured out to eating very thin slices of square cut Tillamook Medium Applewood cheddar cheese. It has been a successful venture!

  Savory food has been something I have been craving lately. Done with sweet liquid food, ie. Ensure. Damon suggested the small container of Pacific Foods' Roasted Red Bell Pepper & Tomato soup we had in one of the kitchen cupboards. Oh my goodness! It was delicious!  I need to remember to drink things slowly because if I don't, it will hurt like heck. But, that soup was so good! Pre-cancer drinking days seem like it was just yesterday. Not a worry in the world. Sadly, it just isn't the same now. Sigh. A sign of how things are starting to change for my new normal now.

  It is important for me to stay in the present instead of being worried about tomorrow. That was one of my flaws. I would be constantly worried what was going to happen tomorrow. So, tonight I focus on what I need to eat tonight to keep those calories going in my system to get ready for the radiation and chemo next week. Damon has been reading on a Facebook group page for Esophageal cancer caregivers caring for their loved ones about ideas for dinner meals, especially for those who are wanting more savory meals which was mentioned here.

  I have a set schedule which I don't always adhere to which then messes with my sleep pattern. It would be a great night if I can even get two 3 hours of sleep in between the every four hours to take my pain medication which consists of wearing a 72 hour patch; 7.5 ml of another pain medication and now have just added liquid Tylenol. 

  The change in pain medication has been trying as we are hoping to get onto schedule that will work throughout this next 6 weeks of radiation (5 days a week - Monday through Friday) and chemo (once a week only). I would rather not share what pain medication as being judged for taking two pain medications that can be addictive, especially with my past alcohol addiction. My oncologist and I are on the same page on this pain medication decision making. This has been a thorough process to make sure that addiction is not a huge worry with the oncologist's advice and professionalism. I have every confidence in my oncologist and his awesome team.

  This is my first night in awhile to not be so doggone tired which would lead me to not being able to finish a blog entry. It sure feels GREAT! 

(04/26/2020) That didn't go as planned...got TIRED anyway! lol

Fast forward to today (04/28/2021 at 6:54pm). I got my 2nd vaccine shot today. It made so sleepy when I got home after the vaccine visit. All I wanted to do was go straight to bed and sleep. I have a hard time sleeping during the daytime. But, this time, I just REALLY wanted to sleep. However, I forgot to do something I was supposed to do when I got home. That was supposed to change my pain medication patch which is supposed to be changed every 72 hours to freshen the pain medication location. 

  Thank goodness that Damon reminded us that I was supposed to have a fresh patch put on my body but in a new location on my body. Not sure how long this is supposed to continue. But, I sure hope it's done SOON. I am tired of all this pain medicine yet I know this is helping me to get through the excruciating pain I experience all day and evening. The pain is similar to dealing with heartburn but three times that amount and sadly takes longer to subdue that it finally becomes tolerable. May I ask where that saying "No pain, no gain" originated?? Thankfully, Damon or Amanda wake me up twice in the middle of the night to take my pain medication. However, I try to remember to set up the alarm for both times so they can both get their sleep. They both work full-time jobs. It's the least I can do for them! 💗

  Back to the 2nd vaccine shot done earlier today. Damon and I got there early in hopes they would get in early. And luckily, the schedule seemed to be light over there! Damon and I were elated! As I am waiting to get the shot, the nurse giving the shot was so talkative and shared a lot in the short amount of time it took to put the needle in my arm and taking me to get seated in the recovery area (15 minutes before you are allowed to leave just to make sure you are safe to leave). I thought I talked a lot! But, I knew this nurse needed to talk. So, I listened intently. She asked me questions about my experience so far with the esophageal cancer and how was it determined that I had the cancer. I told her that I only just found out since March 29th, 2021. She was in awe how positive my attitude has been with the cancer and its effects it has had on me and my family. I told her that being a 11 year sober-free from alcohol it affects the entire family when I was drowning in my addiction. Well, the cancer is very similar to the addiction. The entire family and other loved ones are greatly affected by it. Therefore, once sobriety comes to be a reality, it brings families back together in a more positive way once the trust is established and you really want to re-establish that family unit (which I badly wanted but knew I had to work hard at it which has paid off!). 

While I was in the recovery room, ten minutes later the nurse came looking for me to chat a few minutes more. It was a slow period for the vaccination shots and she seemed to want to talk more freely. I thought that was so sweet! In the room where I got my shot from her earlier, she told me she wished we were neighbors so that we can chat A LOT more. What a wonderful compliment. Sure made my day!

  Before I forget, I spoke with one of the nurses for my oncologist regarding my weight loss before radiation begins next week. She said that I would need to get a Covid test and most likely need to be on a feeding tube (yep, sadly. 😢) before radiation begins next week. This will be my 3rd Covid test! Ugh.

  All right. My tired body is calling it a night. Wishing you all a lovely rest of your Wednesday evening. I feel like this is a Sunday night.

 Take care all! Love to you all! 💗

- Liennie