Journal Entries

April 9, 2022 – Today makes one year since my last chemo treatment. Kaiser won’t call it remission. They call it a chemo holiday. Well, here’s to a long extended holiday. I will call it remission. Idc if Kaiser won’t. Happy Saturday

Ringing the bell my way.

March 22, 2022 – I usually update when I have scans. I am trying to update more often. I read that Nightbirde from American Idol passed away and I broke down. It’s weird to cry for someone I don’t know. I had started to follow her on Instagram and liked listening to her post. I could relate to some of the things she said. I don’t know if any other cancer warriors were following her and rooting for her. I sure was. She said 2% is a lot. My number is 5%. It is so damn hard not to be scared. It is so hard to be positive all of the time. It is so hard to try to avoid any negative emotions when you worry your number can be called any day. There is a 5% chance I will survive beyond 5 years. That means there is a 95% chance that I won’t. This June is year 4. That gives me one more year. I do allow myself to feel the negative emotions. I have to. I can’t keep them bottled up or I will lose it. I have my 1-5 minute cry. I just make sure I pray every time I allow myself to get angry or sad. I pray for God to ease my pain, to take it away, or to give me the strength not to be so mad. I breathe in and out while praying. It seems to help. When that doesn’t help, I work out because that makes me feel better. Must be the endorphins. 🙂 I also took some time last Friday to go sit at my favorite spot by this lake in my city. I love to watch the ducks swim. It is so peaceful. I even saw a beaver this time and got a fish flipping out of the water on video. That is therapy for me. Yes, we can feel those negative emotions, we just can’t allow ourselves to be consumed by them. Easier said then done as I count down the days to my next scan on April 3rd. I am praying for this scan to be clear. One year without chemo. Let’s do this!!! I will be spending a lot of time at my lake until April 3rd to stay sane.

March 11, 2022 – I scheduled my next CT scan for April 3rd. The countdown begins. For the past three days I have been waking up around 3:30-4:00 am again. I go through this every time scan time comes around. For the past week the bottom of my right eye has also been twitching. I don’t feel stress but I know I must be. I decided to meditate this morning since I was up so early. I even had time to brush some of my German Shepard’s winter coat out. Now I am trying to make it through the day. Waking up that early makes it hard to get through the day. I just hope I don’t do this until April 3rd. Hopefully meditating will help. Scanxiety sucks! This one is a big deal. I will have been off of chemo for one year and no one with my cancer (at my hospital) has done that. The only other person like me was off for three months and it had spread during that time. I wish I could talk to this person and see what protocols they are on. I wish I knew how they were doing now. I never considered giving Kaiser permission to give my information to the patient to see if they would be willing to exchange information. I will definitely have to see if I can do that. Some times I feel like my days are numbered. I try not to cry while even typing that. Scan time is the only time it is really hard for me not to be scared and to try and stay positive. However, I know the stress is not good for me so I will be meditating and trying to utilize every tool I learned in therapy to keep my mind and body at ease. Stress = Cortisol = Inflammation = more disease (cancer). I have received that message loud and clear for the past three years. Time to relax.

February 21, 2022 – It has been awhile since I have updated. I apologize to those that read my blog. I started my new job last October and so far I am loving it. We are about to get really busy but it will be a fun busy. I hope!!! My new coworkers are great. I had a little scare with some pain around my spine last December so my Kaiser Oncologist brought me in for a Pet Scan. Thankfully the scan was all clear. I have Scoliosis so I am use to having back issues. It just sucks not knowing if I should rule it out as back pain. I worry that if I do that I will regret my decision later because I may find out it is cancer. Symptoms of Esophageal cancer can be the same symptoms for Covid, the flu, Asthma, allergies, etc. How do I know the difference? I’ve decided to just trust my gut and intuition. I am reading the book called “Radical Hope” by Kelly Turner. She also wrote the book “Radical Remission” which I read back in 2019. Both are really great books and I highly recommend them to anyone fighting cancer. I actually feel these books can be for anyone and not just people fighting cancer. “Radical Hope” has a section on intuition. I actually was annoyed by how long this section was and had to quickly check myself to be more positive and try to get through it. I am glad I did. I feel better about my decision to just follow my instincts and listen to my body. I am sure my body and my “inner wisdom” will tell me to go get checked when I need to. Living with uncertainty every day can make a person have anxiety. I try so hard to find ways to avoid anxiety or any kind of negative emotion. I will scan again in April. My Kaiser Oncologist told me in December “this is a great scan, but it is not like this cancer to behave this way. Eventually it will start spreading. When it does it won’t be because of anything you did or anything you didn’t do. I don’t want you to blame yourself. It will be because that is what this cancer does. When that happens we will put you on Immunotherapy to give you more time”. I was so put off by that. I haven’t had a chemo treatment since 4/9/2021. I am doing so well. She insist there is still a tumor in my esophagus. I asked her why the tumor wasn’t listed on the Pet Scan report. She just said that it is just hanging out there. My COC Oncologist told me last May that it is not unusual to see something at the original site. It is more than likely my dead tumor that Kaiser refuses to take out since I was stage 4. I get my Kaiser Oncologist position, I just don’t like it when she says things like that. It is discouraging and makes a person consider giving up. I told myself I will do everything I can between now and the next scan to try and make sure that scan is a good scan. I will be very disciplined and be sure to follow my protocol every day. The big issue has been food. I think I now have it under control. I am back to two smoothies a day, eating 2-3 solid meals, and tracking my calories to make sure I am getting enough nutrition every day. I meal plan so I don’t mess up. For the past 11 days I have taken in a minimum of 2400 calories per day. This is a big deal because for the past year I had been eating an average of 800-900 calories per day. I also had Covid last month and got through it without having to go to the hospital. I lost more weight because of Covid, but managed to get it back. I lost two fellow cancer warriors this month. It hurt and it scares me. I just keep telling myself my story will be different and yet I feel guilty even thinking that because I wanted them to survive too! Worrying about being next is not a good feeling. However, I tell myself I have to stay positive and so I shall. I have a grandchild on the way this September. I can’t go anywhere.

October 20, 2021 – I had a CT scan this past Sunday. I wasn’t due for another scan until November 1st. I asked to move the scan date up because I accepted a new job offer. I just wanted to make sure I’m still all clear. Each scan I hold my breath just waiting to see if this is going to be the one to revoke my NED status. I’m happy to say I’m still NED!!! My Oncologist said it is an excellent scan. I’m still amazed that I am doing so well. I feel extremely blessed and I still ask God every day to continue to show me my purpose so that I can continue to do it. I am still not sure what my purpose is. Are any of us? I hope my story helps others. I hope it gives those that struggle with cancer or any awful disease hope. Hope is so important to me. It goes along with my faith. I figure whatever my purpose is I must be doing it because God has been keeping me around longer than I expected. I only hope and pray I continue to be needed for a very long time. 😍 I’m just not ready to go. 😊 I will be starting my new job soon and this is definitely going to be an adventure. I’m going back into management. Praying I still have what it takes. Chemo did a number on this brain of mine. I feel more like my old self more and more each day. I don’t ever want to forget these last three years. If I am truly lucky and I get to live to be an old woman, I want to always remember the lessons I learned after I got diagnosed. One of the biggest was learning to let things go and learning to ask and accept help from others. To give you an idea of my obsessiveness, I have learned to not worry if the bed is always made every day and even have skipped laundry for a week a couple of times. I miss having energy to clean like I use to. My being able to skip these things actually gives me some relief. My husband and I have agreed to hire a maid to keep the house clean. Work takes most of my energy and this new job is about to take it all. The trade off will be a maid so I’m happy. ❤️

September 5, 2021 – I had my third Covid vaccine last Tuesday. I had a severe headache for two days, broke out with hives, and I had horrible neck and shoulder pain. They also offered me the flu vaccine but after my experience with that last year, and now my response to my third dose of the Covid vaccine, I am really skeptical about getting vaccines (for myself). Sucks because I never had issues before. I will have to think long and hard before risking the flu vaccine. I hate being in this position. I finally went skydiving on 8/21/21. It was awesome. I had trouble breathing while up in the air and missed pulling my own parachute. My trainer pulled it for me and I was able to take over from there. My landing was perfect. I got a little close to the power lines but thankfully I missed them. I absolutely loved it and hope to do it again next year. Hopefully I can post the video here. If not I’ll add it to my photo section. My clarity in thinking is also returning and my COC Oncologist said it will only get better. I cried when I first realized my clarity was back. It’s like my old self has been buried inside of me under a fog or cloud and now she is emerging. The sky is a clear blue and the clouds are moving out of the way. That’s how I can best describe how I my brain feels. I cried because I was so happy to finally feel normal. At least normal in that department. I went to Sac Anime with my son and his friends yesterday. I was on my feet without my scooter for too many hours. My feet swelled up. I clearly need to take my scooter if I plan to be on me feet for more than a couple of hours. As much as I don’t like using the scooter I’m thankful I have it so I can continue to participate in events such as the one we went to yesterday. I just hate how people stare. I told my husband that I will try to be positive about it and be thankful that I can last a couple of hours on my feet because two years ago I couldn’t last more than 20 minutes. I remember I couldn’t even walk outside and around the neighborhood on my breaks at work because I couldn’t trust my feet to last. I started to walk inside of the halls at work just so I could continue to walk. That was 2018-2019. Such dark times in my book. I struggled and pushed myself and would count how many times I could round those halls. I made myself go around 20 times for each break. My feet would scream at me but I was so pissed off about my limitations I pushed. I knew as long as I was in the hall, if I fell I could at least call for help. Before chemo I walked all around the neighborhood around my job. I love the trees around there. I would put my earphones in and I would walk all over on my lunch. Then chemo shut that down. I am thankful to be able to walk with my coworkers again and to be able to walk outside. Despite knowing I will still be needing a scooter, I will focus on all the positive accomplishments I have made these passed few years and look forward to making more. Accomplishment – I can last more than 20 minutes and up to a couple of hours on my feet. Therefore I don’t need the scooter as much. That’s my takeaway ❤️❤️❤️

August 7, 2021 – I had my first routine scan today after being off of chemo since April 9, 2021. The report was emailed to me within a couple of hours and I am happy to say that I am still NED!!! I was nervous all week and even had a breakdown Thursday night. I have three more months until my next scan. I have scheduled my skydiving class for 8/21/21. I’m taking a class that will allow me to jump by myself on my first jump. I can’t wait. I’m still struggling with my weight but have decided to not focus on the scale too much. Instead I am going back to the gym and drinking two smoothies a day rather than one. I am getting one meal of solid food in a day. I need to get three in. That will be this weeks goal. Trying some new routines to see if that will help me eat better. Other than that I have just been doing home projects around my house. I did my own landscaping on my front yard for the first time and I was so proud of myself. It hurt to bend over for a couple of days but it was worth it. I don’t usually like dirt so this was a big accomplishment for me. For the past five years I have tried to tackle fears that have prevented me from doing things I wanted to do. Dirt and bugs kept me out of my yard. 🤣 Sharks keep me out of water I can’t see the bottom of. I swam across a lake in 2017. My kids were shocked when they saw I swam over to the island they swam out to. I was proud of myself. I started back to work this week after being off for two months. It was good to be back and it kept me busy so I didn’t sit around thinking about today’s scan. I am happy and I feel blessed. I won’t lie. I do worry that this will come to an end. I pray and hope not. For now I will take my victory and go celebrate tonight. 😍❤️

July 7, 2021 – I just added the picture of the infrared sauna that I have been using. My Oncologist at the COC has been encouraging me to get one for home. I finally did and I love it. Actually, I don’t like sitting in them and heating up, but I do enjoy how I feel after I use it. I am still using the wet sauna. I am using the infrared sauna twice a week for fifteen minutes and the wet sauce twice a week for ten minutes. I have added a picture of the infrared sauna I use. I got it from Therasage 360. I chose this one because not only did it come recommended by my COC Oncologist, but it also has low EMF emissions!!! I have also been having a great results working with a Hypnotherapist for my eating issues. I manage to put on six pounds. I still would like to gain five more. I don’t have danger signals going off when I look at food anymore and I don’t feel so stressed about eating. I am exploring different meal options. I bought Tofu for the fist time. I plan to try a recipe out in the Air Fryer. I have come up with some smoothie recipes that are high in calories and healthy!!! The best part is just actually feeling hungry and enjoying eating food again. It feels so good. I have been wanting to add a link to my testimonial I did for the COC. I put the link in my link section. I will also put it here. https://youtu.be/Gw890guSidE. A little over a year ago they asked me to write a three minute testimonial to represent Adenocarcinoma. I hope mine and others inspire others to hold onto hope. There are other options and I am thankful for each and every one of them.

June 11, 2021 – Today is my three year anniversary. Three years ago today is when I got the call that changed my life forever. It is an anniversary that I wish I didn’t need to brag about, but I will because I am blessed to still be here. Unfortunately I may have developed Cachexia. I lost ten pounds in two months. My therapist says I have an eating disorder. I see food and I immediately categorize it into categories of carbs, sugars, dairy = inflammation = more cancer!!! I have been starving myself for the past year and a half and have only been eating enough to get by. I decided to take some time off from work so that I can see if I can put my weight back on. My Oncologist told me that Cachexia is a clinical diagnosis and there isn’t a test to give me to make sure I have it. She said if I can gain weight, I won’t get the diagnosis. I don’t like what I have read about Cachexia so I am going to prove I don’t have it. I won’t lie, I am nervous and scared. I have upped my therapy sessions to once a week and I will also be trying Hypnotherapy to see if I can clear this mental block I’ve created with food. I did a search for Cachexia in Joe Tippen’s “mycancerstoryrocks” group and I saw some people comments on things they have tried to battle Cachexia. I will do like I did in 2019 and pour through everything I can find. I am going to focus on relaxing, meditating, trying new foods to see what I like now (chemo changed up my taste buds), and try to get rid of this mental block I have created with food. I was working out with a trainer at the gym to help me build muscle, but my husband and I agreed today that I will postpone my workouts for one month and focus on therapy and eating. My trainer and the dietitian at the hospital do not think I have Cachexia and instead think I am malnourished. My trainer said she can still see muscle on me. I pray that they both are right.

May 14, 2021 – I had a Mammogram, Pet Scan, and a brain/back MRI over the past week. I received my results yesterday. All clear!!! I did two chemo treatments in January and stopped them in February and March so I could get my COVID vaccines. I had chemo on April 9th and had a horrible week of side effects. I said no more. I can’t keep putting chemo into my body and going through this until I physically see cancer on a scan. I know they say you can’t go into remission or be cured of this kind of cancer at stage 4 and the best I can hope for is NED. Well, I truly am praying after being NED for two years that I can stay off of chemo. I know it’s a risk but I have to take it. I want so badly to change the statistical outcome of this disease for myself and anyone that gets effected by it. I met a man on the plane last night and his name was Steven. Something told me to tell him my results and I’m glad I did. I just tapped him and said “guess what, I’m in remission”. I know my Oncologist won’t use those words but I will. I will claim it and shout it to anyone willing to listen because I have been to hell and back over and over again and I know my journey ahead may still have more battles I will need to fight but I will take this victory and enjoy every second of it. Steven told me about his esophagus problems. Fortunately for him they have been treating it but he hasn’t been seen in awhile. I told him about Barrett’s and the risk of cancer. I know it sucks to scare people but cancer sucks more. Early detection is key and preventive measures can be put in place to try and keep from getting this. To try!!! At least we can try. Anyhow I pray he and no one gets cancer. I know I can’t stop it. Breaks my heart. I truly wish people didn’t have to suffer. Anyhow, I am officially off of chemo. I will be scanned every three months and do labs monthly. If or when (those that know me know I hate to only use “when”, because remember “when” writes me off and “if” gives me hope) we see cancer on a scan, we will start me back on chemo. Until then I will continue to live in these three months increments. Cancer patients understand what I mean by that. Glory to God. Hallelujah and praise Jesus because I truly believe my faith is what has kept me going.

February 11, 2021 – I had one of my routine CT scans this morning. I got the report emailed to me. I have a spreadsheet where I list all my scans and their results. I like to do a side-by-side comparison from day one up until now. I’m happy to say I am still NED!!! I cried in the parking lot before going in for the scan. I cried when I read the report. This up and down roller coaster is maddening. I get so anxious (scanaxiety) a week or two before every scan. I don’t think that feeling of dread will ever go away. I told my cousin today it’s literally waiting to see if I am dying. How does one stay sane going through that every three months!!! I meditate, pray, pray, pray, and keep asking God to just give me a purpose to stick around and I’ll do it. Last night when I said my prayer I told God “I don’t want to die but I am tired of this fight. I’m willing to keep fighting if you keep giving me a purpose. I know you give us what we need and not what we want and that we can’t question you. I know I want to live but if you feel I am not needed anymore then I accept your decision”. I put my meditation playlist on and I felt peace. I feel asleep fast and I usually have trouble sleeping the night before a scan. Not this time. I’ll always have fear. Yet I seem to find peace in my faith in just believing that if I’m here it’s because I have a purpose and when that purpose ends so will my time here. I am not in control of this. All I can do is be grateful for every day I open my eyes and have another chance to fulfill my purpose. Another chance to enjoy this life I’ve been given after I had taken so much of it for granted. I’m a work in progress. I’m basically getting back to me. I have started reading again. I love to read. I don’t get anything done because once I start a book my attention is completely overtaken by the book. I am walking my dogs by myself again and they are behaving beautifully around other dogs. They even ignore ducks. I have started trying to spend time with family members and friends (safely) and to try and stay in touch with people. Working and fighting cancer is like working two full time jobs. This pandemic hasn’t made it easy either. I was just working on getting my introverted self out of the house when the world shut down around me. I remember having neuropathy pain so bad in my feet that dancing was impossible. I don’t have much rhythm but I still love to dance. A friend came into town for her birthday and me and all my girls got together for her birthday. I danced all night. We had so much fun. I cried later because I remember thinking I would never get to dance again. I felt so free that night. I hold onto that. Every day there is going to be some bad news. I give it a few minutes, toss it up to God, and I focus on all the positive things around me.

January 11, 2021Happy New Years!!! I had chemo treatment #49 on 1/6/21. I hate chemo as I am sure anyone that gets it does. The week after is the worse. The nausea and pain is annoying. I know it could be a lot worse. I just hate knowingly making myself sick every three weeks. This is one week I wish I could just stay in bed for. I’ll get through it like I always do. I just feel so down and depressed during this week. I always have to find ways to smile. My back started hurting on Saturday. Turns out it is swollen along my spine. Checked it today, and it is still swollen. I am nervous because I know my cancer was in a lymph node located next to the spine. I am worried, but going to try hard not to think about it. That is the way it is when you have cancer. Any problem you have you worry it’s “the cancer“. I want to make two bucket list this year. One that has things I can do during a shelter-in-place and one with things I can do if the world ever opens back up. I will only look at list that is applicable to my counties current status. This way I don’t spend the year staring at a list that contains things I can’t do. The past couple of years have been tough. I’m tired. I’m just tired of it all. What emotion hurts the most? Anger or sadness. Either way I see they are both negative emotions and I don’t like to feel them. Yet I have to fight through every day to keep them from taking over. Even more so the week after chemo and the day before. I’m a whining baby today. I am just really feeling it.

December 4, 2020 – Hello. It’s been awhile. I had my last scan 11/2/20 and I’m still “stable” or NED. This December makes one year since I started getting my chemo treatments every three weeks instead of every two. My quality of life has greatly improved. I still battle with muscle weakness, on and off bouts of nausea, neuropathy pain, and of course appetite issues. Appetite is my number one problem. I am still struggling to eat solid foods. It’s not that I don’t want to. I just don’t usually feel hungry. This entire year has been good and bad. Good in that I felt grounded and more at peace than I did in 2019. I have been feeling more hopeful, positive, and focused. My neuropathy has improved. I can walk and stand longer. My hair is even growing back. The bad part for me has been putting my bucket list on hold. I was supposed to go to Las Vegas this month to celebrate my birthday with my bestie. COVID has shut that down. I wasn’t going to gamble. My bestie lives out there and I just wanted to curl up in some warm pajamas, drink hot cocoa and maybe a few shots of tequila (already cleared the tequila through my Oncologist. He said no to margaritas because of the sugar 😜) and watch some Sci-fi movies while we talked and laughed. I miss them. My other best friend was trying to meet us out there too. So now I’m disappointed, but I’m not giving up. I will just hold onto my faith that this too shall pass and I will get to take that trip as well as many others.

April 14, 2020 – It has been a while since I have been on here. Covid!!! It has benched me. I am on quarantine as many of us are because of my “underlying condition”. If I did not have this “underlying condition” I still would be at home because everyone but the managers got sent home. I some times wish I could work from home. In the mean time I have just been driving my husband and 15 year-old crazy because they are pretty much it for me of the people I get to see. One thing I did do that I am very proud of is I made a decision not to have chemo on 4/10. They called me and cancelled my 3/20 chemo and I was devastated and worried. I thought it over and realized it probably was best for my immune system not to have it. I then had a phone appointment on 4/9 and I ran my idea of skipping my April chemo so that I can keep my white blood cell count up in case I do get Covid. Since I have been stable for so long they agreed with me that I may be okay. I am supposed to have chemo on 5/1, but they are aware that I am planning to skip that one as well. I will have a Pet Scan in mid May and get the results on 5/22. I am praying that I will remain NED during this time of not having chemo. Am I nervous? I sure am. Especially since I have not had chemo since 2/28. I feel like I am playing Russian Roulette with my life. However, I have a strong feeling that I am going to be okay. Even if something shows up on my Pet next month I still feel like I will be okay. I told Oncology, if something shows up, we will hit it hard and go from there. I do have to say that I feel fortunate to be in a position to choose treatment or not. In the mean time I am getting ready to help my son finish up his freshman year through Distance Learning. I have been upset not being able to work because I was so excited to have returned to work. In due time I will be back. In the mean time my doctor said my main job is to keep taking care of me. They also said this “there isn’t any proof that all of what you are doing is working, but at this point we have to acknowledge something you are doing is working”. It felt so good to hear them say that. She told me to keep doing what I have been doing. Even asked me about the COC protocol and told me to make sure I keep on it and to keep taking all of my supplements. I sure will!!! I hope the rest of you are coping well. I have been praying for all of us.

February 29, 2020 – I just want to say I am touched by all of the people that have reached out to me. I tried to go in and respond to some of your emails. I am currently doing chemo right now so my energy level is real low. Give me a few days to pick back up and I will go in and respond to all of those that have sent me emails. 😘

February 16, 2020 – My first journal entry on my blog. I am still trying to figure out how to maneuver around Word Press. 🙂 For the most part I got most of what I have been wanting to share on here. I am sure I will continue to tweak it, make grammar changes etc., as the days pass. Happy Sunday!!!