The livestream address for Celebrating the Life of Kaori Tong on Saturday, December 17th at 10am is:
With deepest sadness, Kaori passed away this afternoon.
I want to thank you for all your prayers and support this year. I can’t express fully my depth of gratitude to you.
Her family was by her side when she passed into the Lord’s presence.
Funeral arrangements will be forthcoming.
Thank you again,
Mike
Due to my high bilirubin and white blood cell count, chemo is no longer an option and chemo is no longer working. Therefore, we have decided to switch over to hospice care.
I can't believe it's been a year since my diagnosis. Every day has been a gift from above. It was dream come true and I really enjoy my time there. My grandma was in tears when I came and tears again when I left. I'm so glad I was able to go. I don't know how much time I have left (ER doctor estimated to "weeks" but I know those estimates are always somewhat of a guess.) I will enjoy every day that God gives me.
Thank you so much for all that you guys have done for me and my family. Right now I'm feeling pretty good because I stopped chemo and family is in town. The love you all have shown me was unbelievable. Thank You! I hope one day my kids can show the same kindness and love you guys have shown me.
Thank you so much!
Love,
Kaori
Kaori was scheduled to have chemotherapy today. However, her blood work showed high white blood cell count and high bilirubin. The oncologist has instructed her to go to the emergency room in case she has an infection and if the liver doctors can find a way to decrease the bilirubin.
Please pray that the liver doctors can do a procedure to bring down her bilirubin and that if she has an infection it would be resovled quickly.
Mike
It has already been almost 2 weeks since I've arrived in Japan. I have one more whole day left tomorrow and then I take off on Friday. It has been dream come true - being able to enjoy the time with my grandmother, relatives, and friends, enjoy good food and with relatively good health during my stay here.
Thank you! This trip would have not been possible without all of your prayers, support and kindness.
Some highlights from second week in Japan.
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| Meeting with my Uncle, Cousin and her youngest daughter at an onsen. |
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| Kids breakfast |
I have to admit, one of the other things that I was looking forward to was the Japanese food. Here are some highlights of what we've had so far.
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| Sushi |
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| Cream Puff (Eaten by my nephew Tristan) |
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| Japanese Cake |
Souffle Cheese Cake
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| Sukiyaki |
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| Soft serve & Iced Coffee with Soft serve and Coffee Jell-O |
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| Yakisoba & Okonomiyaki |
I can't believe it! Thank you so much for all your prayers and support! We have made it safely to Japan.
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Thank you for all your prayers!
The endoscopy went very well. No bleeds and they only had to band two varices.!
Japan here we come! We plan to leave Nov. 3rd and planning on returning the 18 th. I can't believe we are actually going. Kind of crazy!
I did take a blood test and my CEA level went up slightly.
Tickets are bought to Japan! I'll be gone from Nov. 3rd - Nov. 18th. My parents, 2 sisters and my youngest will be travelling with me. I'm both excited and apprehensive at the same time. Please pray that
Thank you so much for all your prayers and support! My CEA number and my bilirubin numbers both went down!!
This week has been a up and down week. Most days, I didn't have too much energy but no nausea! I had my blood test today and my CEA count came a little down!
However, my bilirubin has been slowly creeping up and it was at 3.2 today (normal range is 1.2). Hence, I can't take the stronger chemo I've been taking until my bilirubin comes down and the other chemo drug, they want to hold off this week since I had the bleed during my endoscopy. My oncologist was out this week, so I'll touch base with him next week to see what the plan would be. I may be taking a different chemo until it comes back down. So, no chemo this week! 😀
I also had paracentesis this week and they took out 3.5L. I feel much lighter!
Please pray that my bilirubin would start trending down again and, also, wisdom for the plan going forward. I'm also still toying with the idea of visiting my 90 year old grandmother in Japan now that Japan has opened up to tourists. Please pray for wisdom for that as well.
I really appreciate all the prayers from all of you!
Well, the endoscopy didn't go quite as planned ...
On Tuesday, I woke up with really nausea and dry heaving (I was on fast since 6pm the day before due to the endoscopy). Took some medication but it didn't seem to work. Went ahead and went to the endoscopy appointment and they went ahead and did the procedure. They banded 3 more veins. During the procedure one of the arteries popped and caused some bleeding. My nausea didn't cease either afterwards and I was still dry heaving. Due to the bleeding and the nausea, they kept me overnight for observation.
My nausea finally came under control on Wednesday evening. On Thursday, the Internal Medicine Doctor came and said I could be discharged! However, 10 minutes later, the GI doctors came and due to my declining hemoglobin levels, they wanted me to stay another night. That night, they gave me a blood transfusion to increase my hemoglobin.
On Friday, the GI doctors came and said I could go home due to my higher hemoglobin levels! This time, my mom and I decided not to get ready until I actually see the discharge papers. Low and behold, an hour later, the Nurse comes in and let's us know that I would not be discharged because she wanted to make sure my hemoglobin levels were at a steady state. If it drops again, it could mean that I have another bleed some where.
On Saturday, my hemoglobin levels stayed up and even actually increased! I finally got to come home! It's soooo nice to be home!!
My CEA went up again this week. 😞 Hoping the next round, it'll go back down!
We wrapped up our 4 week birthday bonanza with 2 more birthdays in September.
Mike's ice cream birthday cake with Texas Pralines and Coffee! Yummm ...
And last but not the least, Hannah turned 14! She had her favorite Berry Chantilly Cake.
It was great being able celebrate everyone's birthday!
Chemo was on Sunday and it took about till Thursday until I had my energy back. The weekend was good and then on Monday, I had some diaharea in the morning. Thankfully, Imodium worked and I'm feeling much better today. Next week is a little busy week for me with my next round of Chemo on Sunday, Endoscopy on Tuesday and Paracentesis on Weds. Please pray for a smooth procedure for the Endo. They are going to check to see if they see if the bands worked from the last time and also, if more bands are needed.
Thank you!
I met with my oncologist today and we decided to post pone the chemo for a week and start again on 9/18. That means no chemo for another 10 days! Wohoo! He also moved the blood test from tomorrow to today, so that I wouldn't have to come back again.
I really thought my CEA score would go up, since I skipped one round of chemo during my hospital stay. However, it went DOWN!!! Small miracle! The last CEA score was 1850 back in beginning of August. Today, it came back at 1347!!
I was also told by a good friend that more energy = less blog posts and more energy = faster text responses too. 😂
Grateful for the small miracles everyday!!
What a difference a week makes! Last week on Weds morning, I wasn't sure if I was going to be able to go home before Labor Day, let alone if I would make it to my birthday dinner on Saturday. I was on liquid diet waiting on my endoscopy and wasn't even allowed out of bed unless I called a nurse.
Today, in the morning, I gardened - i.e. pulled weeds but I really loved doing it, then went shopping at a Chinese grocery store, Walmart and Daiso. Then had lunch, then drained 2 liters during my paracentesis and just had dinner with my family.
I have so much more energy now that I an actually do some gardening - something I really enjoy doing. I'm eating better and eating more of different kinds of foods too!
I have a doctor's appointment with my oncologist tomorrow to discuss future treatment plan and schedule. Please pray for wisdom for the doctor's, for us and that my high energy level with continue. I really haven't felt this good in a long time!
Thank you for your continued prayers. I know there's many of you who are praying for me because there's no way that I could be where I am at without your love and prayers. God has really given me small miracles - more energy, more appetite, no mouth sores, being able to go out to eat and much more! My son complained to me the other day that I am "meaner" now. Which translates to "I have more energy to parent again" - i.e. "Pickup your toys.", "Pickup your socks!", "Don't play with your food", "No you can't have candy before dinner", etc. - I don't let things slide like I used to when I had no energy 😁.
Thank you for being on this journey with me and supporting us! We really appreciate it!
We celebrated my belated birthday this weekend with my parents, my baby sister's family and my brother. My baby sister made this gorgeous cake for me. It was a delicious Chiffon cake with fruit on the bottom with a tower of cream cuffs covered in caramel with a vanilla pastry cream with a hint of Bailey's Irish Cream. It was so delicious!
It was quite a week to say the least. On Daniel's birthday, Nathan and I started to make Focaccia bread together. After we had put all the dry ingredients together, all of sudden felt nauseated. Then I threw up and it was red. I had gone to the dentist that morning, so I thought maybe it's just blood from dental cleaning and had swallowed some blood from my bleeding gums. An hour later, I threw up again and with more blood. By this time, we decided it was time to go to the ER where I threw up again. Once, they saw the blood, I was fast tracked into the triage room. From there, they did a endoscopy and put a breathing tube down my throat for the procedure. Having a breathing tube in your throat while you are conscious and waiting for 3 hours for them to take it out, was the worst part. If all possible, I don't ever want to do that again!
On my birthday (Sun), they moved me to a regular room. They wanted to do another endoscopy before I went home, so I was waiting for them to try to squeeze me in for the second endoscopy. Nothing happened on Monday. Monday night, I was told I cannot have anything to eat or drink after midnight because they were planning to do the endoscopy in the morning. Weds morning, the nurse comes in, tells me I've been scheduled for 12pm. Then at 11:30 am, the nurse comes and tells me it's been cancelled and that they want to do a paracentesis before they do the endoscopy. I also had to stay on a clear liquid diet until the endoscopy. By this time, I was hungry and losing hope that I would get to go home anytime soon. I was discouraged. I already had missed both Daniel's and Nathan's birthdays.
I cried.
I pleaded to God that I wanted to go home. I pleaded that he would spare me from another breathing tube down my throat. Once I started down this path, I thought of everything I wanted. My taste buds to be normal again, I would be able to go to Japan, I would be able to take my kids to skiing this Christmas, my stomach would stop collecting water and I wanted to see my kids grow up.
I also grieved because I wouldn't be able to see my kids get married, be able to help when my kids had their kids and be there for Mike, as he becomes a single father. Over flowing emotions came over me. Then I felt better.
I felt better because I also knew how much blessing God had given to me. Great friends, co-workers, family members and even strangers that have been praying for me, making meals for my family, visiting me and checking up on me. You all have shown me what it really looks like to love people. Thank you so much from the bottom of my heart. God has also given me three great kids, gift of each day, wonderful supporting and loving husband that I've been married too for 17 years and the Holy Spirit to give me strength every day.
Then Wednesday morning.
The nurse comes in and let's me know that endoscopy had been scheduled for the morning and para for the after. I tell him that the doctor's told me that they want para first before endo. He goes back to make a few phone calls to check with the doctor. This was around 7:30am and I thought, here we go again, I'm not going to get this done today either. However, by 8am, the nurse comes back and tells me, they scheduled my para for 9am and they rolled me out of the room by 8:10am. They took 6 liters out. Then the endoscopy took place at 12pm. The nurse tells me that if I hadn't done the para first, then I would have needed a breathing tube again! I'm so thankful that they were able to do the para first. I woke up around 1:15pm and they were able to clamped 6 blood vessels to decrease the chance of it bleeding again. At 4pm, my lunch/dinner finally arrives and I just needed to show them that I can keep foods down for me to be discharged. I ate some chocolate pudding first and threw that up 15 min later. I waited for 30 min and tried again. This time, I was able to keep it down for 15 minutes. (I did eventually threw up again that night but I was already at home and no blood!). I was discharged around 6pm and wasted no time to get in the car and go home.
Today, I feel much better! I have no nausea after taking the meds and I have much more energy.
Thank you everyone for all your prayers and encouragement! I'm so glad to be at home again!
On Thursday, August 25th Kaori had an episode of vomiting blood. We drove to the ER at UTSW. From the house until they scoped her, she had a total of 5 episodes. During the procedure, Kaori received a blood transfusion. Thankfully the initial scope found no active bleeding. However, her stomach showed that she had a clot and food contents in it. So, the doctors could not rule out if there was still active bleeding. She was admitted to the ICU and they left her intubated as the doctors wanted to perform another scope the next day. During the evening, the doctors also performed a CT scan.
On Friday, the results from the CT scan and the second scope showed no signs of bleeding. The doctors put in a central line and an arterial line as she was on many medications and had very low blood pressure. It was so low that they decreased her sedative and pain medication to the point she was aware and watching some TV while intubated.
On Saturday, her blood pressure improved so the doctors were able to increase her sedative and pain medications. The GI team decided that since Kaori did not have another episode and were confident that there were no active bleeds, they wanted to wait until Kaori got stronger before doing the procedure to band off potential abnormal veins that might bleed. The ICU team then decided to remove her from the ventilator. While it took some time, thankfully, she was off the ventilator that evening. That evening, she had some nausea and a couple episodes of spitting up mucous.
Today, Kaori’s birthday, she is on a clear liquid diet and will hopefully be moved from the ICU to the normal rooms. She is looking so much better and hasn’t had an episode of vomiting.
Please continue to pray for her recovery and that the doctors can formulate a plan to help decrease the risk of future bleeds and that she can continue on her chemotherapy treatments. We appreciate all your prayers and support for us.
Mike and Kaori
I think I've gotten into a rhythm with the 2 week chemo cycle. I get chemo on Sunday, Sunday to Tuesday, I'm usually a little nauseated (nausea medication takes care of that), Tuesday to Friday, I'm pretty tired and then I get a second wave of nausea on Sunday. By Monday, I feel much better with much more energy and the second week I'm able to much more - with naps in between =). Weds are usually my paracentesis days every week and they usually take between 2-4 liters every week. Then Sunday comes and we start again. Outside of just being tired the first week, I've been blessed with no real pain or constant nausea that medication cannot remedy. Sometimes, I do sleep too much and I can't sleep at night. One night, I was up till 3 am, because I slept the day away. Oops 😋
My kids have been in school now 2 weeks already and have gotten into the swing of things. They are enjoying seeing their friends again. Our family has also started our birthday bash. It starts with my youngest son, Daniel's birthday on 8/25 and ends with the my oldest, Hannah's Birthday on 9/23. All 5 birthdays are between those dates! I think one day, we are just going to do one cake for all of our birthdays but, currently, my kids would be very sad with only 1 cake. They look forward to the 5 cakes in 4 weeks. 😁
WOHOO!!!! My CEA count went down! It went down too 1816 from 2467!! I have to admit I was pretty pessimistic this week that my CEA count would go down this week, since it stayed the same last week. I was just hoping it wouldn't go up. It actually went down 😁😁😁
I am so grateful! Thank you so much for all the prayers, encouragement and love! Time is a gift from God and I just feel like I gained another 2 weeks!
I will be getting a blood transfusion early next week, so hopefully, that should help with my fatigue.
I am so relieved that my CEA numbers went down. Such a blessing!
Chemo went well but for some reason, it wiped me out for the whole week. I basically slept the whole week and, then, Sunday afternoon I started getting energy back. Even though I didn't have any energy, very thankful that I had no nausea or other side effects!
On Wednesday, my kids started back at school. It was bit chaotic in the morning, where my 8th grade daughter was yelling, "What's my bus number?", "Can you print out my new schedule?" Which I did think, shouldn't you have done this the day before 😴. We also had 2 out of 3 kids make it back home on the bus but one kid was mistakenly put int car pool group. We had to pick him up at school. Thankfully, Mike was already at home, so that all worked out. After that, the rest of the week went very smooth!
Looking forward to the new school year!
We had a family reunion this weekend of my side of the family. My parents and all my sibling's (2 sisters and a brother) family was able to come. 9 adults and 9 kids! It was lots of fun!
We rented a water slide one day. I had no idea how big this thing was! It was taller than our second story. I'm very glad no one got hurt! They were flying down this slide!
My dad even went down the slide! And then went back up for a second run!
The following day, we went to Nerfies and the parents enjoyed shooting all the kids and the kids enjoyed shooting back!
We also had a worship time as a family. We selected some of our favorite hymns/worship songs and gave thanks for all God has done. I would not be here today without His love for me and strength from the Holy Spirit. God has shown His love for me through my health and getting me this far, through the Holy Spirit giving me strength during the rough days, through my family's support and through all my friends support and encouragement. The love that you have shown me has been incredible. I wish I had known how to show love to other people like you all have shown to me. I am so grateful for all of you. Thank You!
This clip is the kids singing a song that they learned at VBS this year.
With You, my God, beside me
I'll rest, I'll trust Your timing
Right now, I'm picking up praise
Although the night grows darker
I'm safe with You, my Father
Right now, I'm picking up praise
So, let my praises roar
Roar like a freight train
Louder than all my fears
So, this is war
Shout to the darkness
You're not welcome here
Through it all
Hallelujah, hallelujah
CEA numbers stayed the same this week. I was a little disappointed but at least it didn't go up!
My family is in town this weekend for a family reunion. Nine kids and nine adults! It's pretty crazy but lots of fun. Will post some pics later!
I also got a green light from my doctor go to Japan! Thinking of going in October but waiting for Japan to open back up from Corvid. Hopefully, it'll open soon!
Last week has been a see saw of energy for me. Not sure what causes the 180 but Monday and Tuesday, I had a ton of energy after the chemo. Then Tuesday evening, I got really tired. Then Wednesday through Thursday afternoon, I was really tired and then got a burst of energy Thursday evening. Then had low energy again Friday till Saturday. Today, I'm feeling much better with energy again. I can't figure out what causes my up and down of energy. Hoping this week, my energy will go up again and stay up!
Thankfully, no major nausea and no vomiting so far! Also, my dry mouth is getting better, so food is tasting better and I'm able to eat more things! Never knew how much a blessing it is when food tastes good!
Yippee!!! My CEA count went down again to 2445! I would love to see back to digits, even 2!
After Chemo #14, everything went well and it's been up and down with my energy level. I took some stronger nausea medication last week that knocked me out for a day but no nausea! My energy level is getting better too!
This week, I've been a bit apprehensive if my vomiting will come back that landed me in the hospital last time. Thankfully, I only threw up twice and it was over! Nothing like last time! Wohoo! Next round of chemo will be on Sunday with blood work on Friday. Hoping those CEA numbers comes down again!
This is the day that the Lord has made, I will rejoice and be glad in it ... (worship song)
Few days ago my middle son (Nathan) and I made some Focaccia bread together. He is a textural guy, so enjoyed putting his hands in the dough and stretching it out. Grateful that I am able to make things with him! Now my youngest wants to make Mexican Wedding cookies! No idea why he chose this one from his kid's cookbook but it sounds good, so we'll give it a try!
This week has been an interesting week. I've been feeling pretty good and I started to eat more. Then on Monday night around 11pm, I started having nausea, throwing up and having diarrhea. By 4am, I had 3 episodes, and with no signs of stopping so we decided to go to the ER. ER was busy that day. I didn't get a room in ER till 5:30 am and didn't get a hospital bed till 6pm on Tuesday. They tried a few different medication. Tuesday is a blur. Apparently, they gave me something that knocked me out for 5 hours. I don't remember a thing. When I woke up Wednesday afternoon, I finally felt no nausea! That was not fun and I'm glad it's over!
When they checked my blood, my red blood cells were down, so I received a blood transfusion on Thursday and Friday. I also did another Paracentesis and drained 3.5 Liters. Now I have more energy and feel much lighter! They want to do another blood test tomorrow morning to make sure my red blood cell count stays up. Hopefully, then I'll get to go home!
In the hospital, a "troop" of doctors came to see me. The attending doctor, the resident and two student (?) resident. It's quite interesting to be seen by a troop of doctors. I'm also on the 10th floor and have a great view of downtown! I watched my fill of Food Network and HGTV.
My kids are coming back from California Saturday night too from a 2.5 weeks stay with my sister - beach, nice weather, pool and tons of fun with cousins! Even though it was very helpful that my kids weren't with me during my stay in the hospital, it'll be nice to have them back!
Praise God, my CEA count went down to! It went down from 3400 to 2900. The plan is to still do the stronger chemo on Sunday. Please pray the side effects will not be too bad. I would really appreciate that!
Photo: 3.5 Liters of fluid taken out of me!
Disapprovingly, my CEA count went up again too 3400. It didn't quite double, which I am grateful for. I'm hoping the next round we will see the CEA count go down again.
Chemo #14 was with the strong chemo again and it did give me nausea on Sunday and Monday. However, this morning, I'm feeling much better!!
I have another paracentesis tomorrow, but my stomach is getting smaller, so I do I don't know how much they will be able to get out. I'm very glad my stomach is smaller!
It's been an up and down week this week but made it through! Thank you all for all your support!
I had another appointment for paracentesis and they only could get1.35 Liters! Which means, my body isn't retaining as much water anymore! My stomach is smaller, I am much lighter and I feel the best as I felt in a long time today!
I have blood test on Friday and Chemo on Sunday with the stronger chemo but last time, my side effects were not so bad. Yay!! Please pray my body would be able to with stand the side effects like last time and that my CEA count will start going down again!
Thank you again for all your prayers and support. I truly appreciate all of you!
I had the paracentesis done on Wednesday. On Friday, I started having some water discharge from the incision where they took the water out. This is apparently common and when I told my doctor, he told me if it doesn't stop by Monday, to come by and he'll glue my incision.
On Friday and Saturday, I was like a leaky faucet with drops of water dripping every 8 seconds. I put a hand towel around it and it would be soaked by a couple of hours. If I could only find a spigot for my stomach on amazon ... 😋I was doing my own paracentesis's! By Saturday night, I was tired of dripping everywhere, so we decided to try super glue and it worked! I'm finally not dripping water where ever I go!
One of the reason my doctor wanted to start trying to resolve the ascites (water retention), is that with ascites, wounds don't heal very well. Therefore, surgery is usually out of the question until the ascites is resolved. Now I understand why! Even with this small incision, it just wasn't healing enough to close the wound.
Good news is (not sure because of my leaky stomach) but I haven't regained my water weight back yet. I was 102 lbs. after the paracentesis and I'm still at 102 lbs.!
We also got to go painting as a family on Friday night. It was quite fun!
I had another paracentesis done yesterday and they took out 7.8 Liters! It dropped my weight from 126 lbs. to 103 lbs.! I felt pretty tired afterwards but today, I'm feeling much better. I think my organs in my stomach had to readjust yesterday, since my stomach has much more real estate now! Hopefully, the real estate will not get flooded again with my water retention! 😀
I've also been eating pretty well. My liver doctor's order was "nutrition" for me. He feels, if I eat more protein, it'll help with my water retention and, also, just eat more food/calories in general. That's my homework! EAT! 😁
My daughter and her friend from last week's judo tournament!
The doctor did add back the stronger Chemo on Sunday. I was more tired Sunday and on Monday morning started having diaharea which gave us a little scare. Gratefully, the anti-diaharea medicine worked so, by the Monday afternoon, the diaharea has stopped! I did have some nausea on Monday but today, I feel much better!
We also saw the liver transplant doctor today. There's only 6 people in the US that they had done a liver transplant for a colon cancer patients. His biggest concern right now for me, is the water retention in my stomach. As long as there is water in my stomach, surgery is not possible. So, first step is to get my stomach to stop retain water, which is probably caused by the scarring of the liver from the chemo and also from nutrition. He also recommends doing a paracentesis every week, instead of every other week. My next paracentesis is tomorrow and then weekly after that. Hopefully, I'll stop looking pregnant soon!
Thankful, that I'm feeling much better today than last 2 days from Chemo on Sunday. Also, thankful, that I'll be seeing a doctor that specializes on the liver from now on. I plan to see him or his nurse from now on a regular basis.
Please continue to pray for my CEA to continue to go down and that my water retention will go down as well!
We plan to go down to MD Anderson on June 24th to get a second opinion as well. Please pray for wisdom for both doctor and us.
Thank you for continue the journey with me!
I did another Paracentesis on Weds and they took another 8 Liters out! My body doesn't seem to want to stop accumulating water! I'll get another one done in 2 weeks. Please pray that my body can heal, so that it no longer accumulates water.
The CT scan did show that my liver was shrunk in size! There is a lot of scar tissue from the chemo. Please pray that the scar tissue does not affect my liver function.
For chemo, this Sunday, the doctor wants to see what my CEA count is. Blood Test is on Friday. He has seen it go up and then go back down again. If it stays steady or goes down, I will continue with the lighter chemo. If not, then we will switch over to the stronger chemo. Please pray that my CEA count will go down or stay steady. The lighter chemo is so much easier on my body! I would love to stay on it for as long as I can.
There is still unknowns with my CEA numbers but I'm glad my liver function hasn't declined. My tastebuds are slowly coming back and I'm able to eat more different kinds of food! I had a grilled chicken sandwich for the first time in 6 month and a breakfast taco! Grateful for the little joys of life!
My kids have started summer camp! They are enjoying going swimming and going on field trips.
Thank you again for all your prayer, encouragement and support! We are a little anxious to see what my CEA count will be on Friday. Your continued prayers are much appreciated!!
We did the lighter chemo again this round. I haven't heard yet what the doctor wants to do with the next round of chemo. Not sure if we would go back to the stronger one. We shall see!
Since, it was the lighter chemo, I am doing well. I have more energy and able to run some quick errands. However, my water came back and I'm back to 129 lbs. 😞 I have my paracentesis tomorrow, so hopefully, they can take 2 gallons of water out again! I feel so much better after this procedure! Like I am light as a feather!
Please pray for wisdom of the doctors of what comes next for me! I'll also be heading down to MD Anderson in the early summer to get a second opinion.
On a different note, my family went to a Fossil and Mineral show last weekend. My son, Nathan, was looking for a very particular type of Geo. He wanted one that was split in half with purple/pink (amethyst) crystals inside. It took him 2 hours to find one and the lady was so nice, she let him have his Geo for only $20! He was sooo happy!
My CEA numbers went up for the first time today. It went up to from 589 to 931. 😞 I'm not sure exactly what this means but it looks like the weaker chemo isn't having the same effect as before. I'm waiting on the doctor to see if my Chemo would change for this Sunday - see if they will add the stronger one back.
I have a lot of doctor's appointments this week for chemo, to assess where we are at, and for another paracentesis. My body still hasn't stopped storying water, so my weight comes back every 2 weeks. However, I will take this over nausea or mouth sores!! Also, please pray for good results on my CT scan! I believe that will determine my treatment plan for the summer.
- Sunday (5/22) - Chemo #12
- Weds (5/25) - Paracentesis
- Fri (5/27) - CT Scan
- Tues (5/31) - Meet with doctor
The CEA results isn't the news we were waiting for but we are still waiting on the doctor to see what this really means (the test results didn't come out till late last night). My husband is a little freaked out. Please pray for him! I am doing good. I am waiting on the doctor to tell us what this exactly means. We shall see! On the positive side, I'm eating more and my dry mouth isn't as severe anymore! I can actually enjoy tortilla and some bready things now!
I feel like we've hit another bump on the road on this journey. I am truly grateful that God has given us all of you for your prayers, support and encouragement! Thank you for being on this journey with us!
Even though, my last paracentesis was only 10 days ago, the fluid started to build back up. Before the procedure last time, I was at 131 lbs. Yesterday, I was already back to 126 lbs. and it was becoming very uncomfortable again.
Yesterday, went back to the doctor's office and got another paracentesis done. 8 more liters of water! They said, I had a pocket of fluid of my right and left side and it looked about the same. This time, they took it out of the right side, but that means, I still have 8 more liters of liquid on my left side!
I feel so much better just having that weight off and the pressure from the fluid. It was feeling like my stomach was about to burst!
Please pray that the fluid would stop accumulating!
I am doing well with the weaker chemo! Praise God that I am eating more and have much more energy!
Thank you again for all your prayers and support!
Wohoo!!!! My CEA is down to 589!!!! That's more than a 50% decrease since 2 weeks ago (1121)!!! AND this is with the lighter chemo!
Yesterday, I went in for Paracentesis procedure. This is where they take out the fluid that is building up in your stomach. Since, about 2 weeks ago, my stomach had been slowly getting bigger again - most likely due to the chemo, vomiting and diarrhea that I had over a month spread where I wasn't getting enough nutrition.
When I was in the hospital for diarrhea, they did the same procedure and took out about 2 Liters. This time they took out 8 Liters (~ 2 Gallons) of fluid! That's about 17 lbs. of weight! I feel so much better now! My stomach went down from looking like I'm 9 months pregnant and about to pop, to 6 months pregnant.
Very thankful for modern medicine! I'm so much more comfortable!
Chemo #10 with much reduced Chemo went well. I was still tired the first few days but no nausea or no sleeping all day like the stronger Chemo causes. My stomach has become blown up again with fluid, most likely due to the lack of nutrition during the 2 week diarrhea stint. I'm back to 9 month stomach. I'm going to get some of the fluid taken out on Monday to make me more comfortable. However, this hasn't affected my appetite too bad. Yay!! I'm eating much better now.
When people had told me before that they don't like Tofu because it doesn't taste like anything, I didn't understand. If it doesn't taste like anything than can't you just eat it, I thought.
Now I know. When food doesn't taste like anything, it doesn't taste good. It really doesn't.
My taste buds has been affected by Chemo. Pepper is super spicy to me and I'm having a harder time tasting salt. I can't do any spicy either (like Indian 😞 or Kimchi ). I'm grateful I'm still able to taste sweet and sour. AND I don't have any mouth sores!! Those things are horrible!!
This week I've been experimenting with difference foods and seeing what I like. It's been fun!
Fruits:
Even though, I had to skip the last round of chemo 2 weeks ago, my CEA still decreased! It's down too 1121 from my original 26,000 in January! My nurse practitioner told me that she wouldn't be surprised if the CEA went up, since I skipped the last chemo but it still went down!! Wohoo!
Thank you so much for all your prayers, thoughts and kindness! I appreciate everyone loving us through out this journey!
