Survival Guide

Reading my last post, you’re probably wondering why I’m not eating anything else. Go for that savory dish, Laurie! Well, the dry mouth and taste alterations make everything feel and taste terrible. This morning I quickly shoveled a bowl of cereal into my mouth. I gagged at first, but held my breath, ignored the texture, chewed as fast as possible, and swallowed it down, even with the 3 teaspoons of sugar. It was like chewing sand and rocks, and tasted like it, too. 

The past couple of days my stomach has been really hurting, with lots of reflux and bloating. The medicine I’ve been taking hasn’t been working anymore. But good news, my new medicine arrived from Canada today. Yes, Canada. It’s no longer FDA approved for sale in the US, so I had to order it from our neighbors to the north. Is it safe? I hope so. I will begin the meds tomorrow. Am I scared of more side effects? You bet. Do I need to contend with more side effects? Sure don’t. Heart issues, dry mouth, well, the list of potential side effects is long, and if I told you all of them, you might run away. 

But I press on, because what choice do I have. I need to get better, like asap. Tomorrow I begin radiation, a daily dose for the month of February. Am I secretly hoping the radiation will make me slightly radioactive like Peter Parker and actually cure me of all that’s ailing me like some incredible super power? Yes, a little. I’m also trying to keep the following quote in mind as I ponder my purpose - will my life be a story of hope and healing for someone else? Maybe. I’m still waiting to overcome in my own story. 

Stuck Eating This

Have you ever seen a 230 calorie pudding? This was my dinner. I’m so tired of a liquid diet and sweet things. I want to eat food, real food, savory food with flavor and texture. Instead I’m stuck eating stuff like this just to get calories. 

This morning I stayed in bed for a long time. It’s part of my strategy to not move around too much and burn calories. I have lost 13 pounds in three weeks but I’ve managed to lose only one pound since last week, which is encouraging because it means I’ve been consuming enough to stabilize my weight loss, even though today was only like a 500 calorie day. Hopefully one day soon I can eat more in order to actually start gaining weight (something I never thought I’d say).

The Stages

I was reflecting today on the stages of grief. If you’re interested in a more scientific perspective and a discussion on way the “stages” discussion should disappear, check out this article here.

But for ease of use, I’m latching on to the stages because it makes sense to me right now. For those who don’t know, the original five stages are denial, anger, bargaining, depression, and acceptance. These are not stages you move through from one to the next or all of them either. Nonetheless it’s nice to give a name to my feelings. 

I have definitely experienced denial, anger, bargaining, and depression. I’d say I’m in that stage right now. I’ve been asking myself, why is this taking so long? When can I move on from this? I vacillate between anger and depression, wanting to know when I will finally reach acceptance.

I thought for a couple of days that I might have started to feel better, and then I didn’t. Today was no different.

I got a fresh haircut - thank you Theresa for coming through with the custom cut! Soon my hair will have grown out and I can have a real cut down.

Then we went as a family to Barnes & Noble. For months I’ve been missing out on family time because I haven’t been able to leave the house. We went in order for Dean to get his birthday treat, but as soon as we arrived I had to sit down in a chair because my stomach was hurting and I felt so sick. 

I’m glad I went out, but hated the struggle. I keep asking why, when, for how long? 

And then this happens. When I got home, there was a package waiting for me, a gift from a stranger with a big heart! Thank you Elizabeth for thinking of me, for encouraging me, for trying to cheer me up! You touched my heart and reminded me that I’m not alone on this arduous journey! Bless you! I look forward to reading the book; hopefully it inches me one step closer to acceptance. 

Faith

Sometimes people come into your life to share a message with you when you need it most. I took my mom to the coffee shop to get some tea (none for me thanks), and to get out of the house. My stomach was hurting since last night much more than usual. 

One woman I’ve known for a while spoke to me about having faith, about believing in God, and trusting Him through all of this. She told me to say it, to vocalize it out loud each day, to tell God “I have faith, I believe.”

Then another woman I met recently came to minister to me next. She talked about how horses have blinders on to keep them from getting spooked and to keep them on the right path. She said I need to know that God has a purpose for me, this is why I’m alive, and to believe in that purpose, to stay on that path with focus and determination. 

So why should I worry? I can’t add a single hour to my life if I worry. And if God can give food to the birds, how much more will He care for me? 

My faith has no doubt wavered during this trying time. Sometimes we just need some gentle reminders of the purpose of our faith. I’m not going to selfishly pray to get better because I believe that God is like a magician who can deliver miracles simply because I ask Him, but if I believe that I have a purpose, then in faith I should be able to ask for the help I need to get through this, to fulfill my purpose. Unless my purpose right now is to suffer… 

I’ll keep wrestling with this one…

Parting The Clouds

I struggled to move today, the rain kept me in place, while I tried to consume consume consume as many calories as my stomach could tolerate. And by the end of the day I managed to take in over 1,000 calories! I’m crazy full but I had to do it! I also made an important step forward by getting small weights and doing a little arm and leg workout. I’m missing the days of my brute strength. 

Despite the pouring rain all day, sunny moments came to part the clouds - 

1. Cat cuddles

2. A bright, sunny journal sent to me from Denmark 

3. Best friends showing up late at night just to hug you and tell you they love you! I’m overwhelmed!

I know, I know I asked you God where you are and if you’re listening. I see these as small gifts from heaven reminding me that there is sun beyond all these clouds I’m living in right now! Thank you for that! 

How Long?

The results of my gastric emptying study came back quickly and they were sobering but not surprising. I should have digested the 8 oz drink more than 90% in four hours. Unfortunately I had 73% of my stomach full after four hours! They calculated that I would digest maybe 50% of my stomach contents in 10 hours! My stomach is not working the way that it should! This is disturbing. 

I spent a couple of hours trying to drink my breakfast, and I was still full six hours later. 

I was supposed to get my infusion but the oncologist was concerned because he couldn’t say for sure that the infusion meds weren’t the cause (although we both agree that it’s very unlikely, I have other suspicions). So he postponed my infusion until next week, after he presents my case, for the third time, to the breast cancer conference they have on Fridays. Instead I got an hour of hydration, which is always appreciated. 

I also spoke to the gastroenterologist and he suggested I try new medication to really try and move my stomach contents in order to get more food and calories in me. 

My friend asked me how my heart is doing…I told her I’ve been asking why a lot lately. Just like David, I wonder if God even hears my pleas right now. 

“How long, Lord? Will You forget me forever? How long will You hide Your face from me? How long am I to feel anxious in my soul, With grief in my heart all the day? How long will my enemy be exalted over me? Consider and answer me, O Lord my God; Enlighten my eyes, or I will sleep the sleep of death, And my enemy will say, “I have overcome him,” And my adversaries will rejoice when I am shaken. But I have trusted in Your faithfulness; My heart shall rejoice in Your salvation. I will sing to the Lord, Because He has looked after me.”

‭‭Psalms‬ ‭13‬:‭1‬-‭6‬ ‭

Gastric Emptying Study

I waited two extra days for my high calorie drinks to be delivered so I ended up with a 400 calorie mango Kung Fu Tea last night to fill the void. I was also wearing my Mrs. Incredible shirt for Lunar New Year, because it’s red and because I was hoping to feel incredible too!

Today I had my gastric emptying study at the hospital. I had to drink a radioactive Ensure beverage and get an x-ray of my stomach every hour for four hours. The point is to determine how slowly/quickly my stomach is digesting. I’ll have the results in a couple of days. 

I am so grateful for my wonderful parents who kept me company the whole time! 

I’m still clinging to the healing process, working on consuming more calories. Thank you my friend for the reminder that even my small steps are helping me make progress! 

The Boy’s Birthday

I was so happy today to celebrate my boy. Dean turned 11 today and it was such a pleasure to spend the day focused on him and not on my own issues. 

Was it an easy day? Not always. I was out of breath a lot trying to set up for the party. I tried to eat today - I made pancakes for breakfast and it took me 45 minutes to finish one. I also ate cold cuts from the “make your own sandwich” party. But by the end of the party I was already in the bathroom with diarrhea. So unpleasant at your son’s party! 

But it was so wonderful to reminisce, look at old pictures, laugh with family, and celebrate my awesome and handsome young boy! 

Radiation Prep

What an exhausting day! I had to prep for the boy’s birthday tomorrow which meant decorating, gathering food and supplies. 

Then I had my radiation prep simulation appointment. This meant I had to get measured in the position I will get radiation. First I had to try on my stomach, they had to measure and mark my skin, then I got a CT scan and waited patiently while the radiation oncologist reviewed the images. Turns out he wanted me to try the other position on my back, so more measuring, marking, another CT scan, and waiting. 

Finally he agreed on my back was the best position for radiation, so they gave me UV tattoos, and sent me home. I will begin the radiation process in about a week and a half. 

I’m still trying so hard to eat. I stopped taking the erythromycin because I have a gastric emptying study on Monday and we don’t want to impact the results, so even though I’m still struggling with diarrhea and stomach pain, I’m trying so hard to get better. 

Last night I went back to my bed after sleeping in the recliner for weeks and it was a crap night of sleep. At 4am I ordered a wedge pillow to prop myself up and hopefully help with my stomach and breathing. Fingers crossed…so much going on, I’m tired of getting beat down. But tomorrow I will put all of that aside to celebrate my boy! 

530

That’s the amount of calories I consumed for dinner. I promised I was doing everything I could to get better, even if it means drinking a high calorie nutritional drink. I’ve lost almost 40 pounds since July. This is the least I’ve weighed since my early 20s. I’m scared. 

I was exhausted today from waking up in the middle of the morning to use the bathroom. The increased dosage is moving things. And I tried to do chores around the house, and that took a lot out of me. I had to rest on the bed, my heart was racing. 

I’m so tired of feeling tired. I’m exhausted from stomach pain. But I’m fighting this uphill battle, and I have to press on. 

Big Goals, Small Wins

I had to do something for my family. It was time to reciprocate for all of their help, so my mother took me food shopping. This was always my favorite activity of the week. Most people dreaded going to the supermarket, for me it was Shangri-La. Fun fact, I really like war movies, and Oliver Stone’s Vietnam movies are incredible. If you’ve ever seen his film Heaven & Earth, when the main character moves to the US, the first time she’s in a supermarket blows her away; she marvels at the excess and the access to so much food. I feel like that character every time I go food shopping, I marvel at the potential for amazing meals and the creativity afoot. 

But less so these days. I found myself crying a little in the freezer section, wishing I could eat. And it was hard, to walk around the store with such little fuel in my body. I was exhausted by the time I got back to the car. 

I crashed on the sofa, unable to do much more. However, I had big goals today. My biggest goal was to consume more calories. I spoke with the nutritionist and the gastroenterologist, and I discussed how badly I want to get better. She gave me suggestions for adding more calories. He upped my medication in the hopes it would give me the ability to eat more, and he suggested anti-nausea meds in case it could give me the courage to approach eating. 

So today I had two cups of broth, a baby food pouch, and a whole yogurt drink! While I couldn’t be out walking for very long today, I got more steps today than previous days, and while my stomach is in some pain right now, I’m proud of my efforts to eat more and hope to keep improving. Big goals - Small wins. 

Crying In My Cookie

This weekend was radio silence, I know. I wish I could say it was for a trip or something, but it was just me, hibernating. Saturday I sat home and did nothing, trying so hard to eat something. Sunday I had a fun day hanging with my friend. Normally we meet out for a meal but she graciously came over and we just watched tv together, it was a wonderful no-pressure hang out. I even got to make her my ramen, which has become my staple meal of the day. We also danced to a couple of songs which felt nice to move like that. 

I’ve been trying to move with some dancing, making it exciting to get up and get around. Nothing much motivates me these days because I’m usually weak and in pain. Today was no exception. I practiced piano for a long time, playing songs I enjoy and making it more fun and less work. But I also made cookies, a package of gluten-free cookie mix. I was excited to dive into one hoping for that delicious cookie flavor I so miss…and instead it tasted terrible and I cried. I just cried into my cookie because I was so sad that I couldn’t enjoy it. So sad that I can’t enjoy any food these days, that eating is a chore and a frustrating chore that brings pain and nausea. 

My dear friend sent me a message and this stood out - 

What I do know as I read your posts, is that in spite of all the tears, uncertainties and trepidation, you maintain an unbending will to get better. 

I’m really trying, my friend, I am. I’m not giving up. I have to get better. It’s the only way I can move forward in this life. I’ve lost so much weight, I’m frail and weak, and this sadness is overwhelming, but I can’t give up! I just can’t! I am missing time with my family because I can’t do things, I’m missing work, and other fun activities. Please pray for my body, that it will heal, that I can eat again and get stronger. Please pray for my spirit, that my will to fight and live does not waver. Amen. 

Hydration

I got a three hour hydration today. I wish I could swim in these saline bags, they make me feel so much better. 

Then I came home and ate some noodle soup. Not as much as I hoped for but I was glad to put something in my stomach. Then I went to see my acupuncturist and I was so happy to see her. Right away she got down to the business of helping me feel better. My mom said, but how will you know if it’s the medicine or acupuncture helping you? I said I don’t care, it doesn’t matter, I just want to feel better, whatever combination works is fine by me! So here’s to hoping that something sticks - no pun intended!

On The Menu

What I ate today

1. chicken broth

2. applesauce

3. three rigatoni

4. chicken broth

along with two electrolyte drinks and my meds.

Here’s my therapy homework

1. stretch for 5-10 minutes

2. take slow deep breaths for 1 minute

3. continue to journal and blog

4. continue to do those things that are bringing me joy and closer to healing. 

It may not seem like a lot, but every day is a push for me. A push to eat a little bit more, to take a few more steps, a push to heal… 

Adjustment Disorder

When I was younger, my mom liked to move. From the time I was born until I graduated high school, I probably moved about 14 times! That means that most years I had to pack my belongings, start at a new school, and make new friends. Even after high school and into marriage, I’ve moved around another 8 times! I have never had issues with adjusting to life. But things have changed. 

Today I finally met with a therapist, and for our first meeting she asked about 120 questions. All of that was to get a baseline/diagnosis for me. Turns out that I have an adjustment disorder with some depression. Yep, that sounds about right, I’m having trouble adjusting for the first time in my life. I’ve gone to dozens of schools, I’ve had dozens of jobs, I’ve visited dozens of countries, but this, this is what I have trouble adjusting to right now. And it makes sense. In every scenario, I got to be me, I got to hold on to what was at my core, but now, I have had to scrap the “me” I’ve known my whole life for a far more cynical version, one who doesn’t just optimistically think that everything will be alright. I’ve been blindsided by life and I’m still suffering the consequences, so frankly, that’s going to take a lot of adjustment. Thankfully I get to meet with the therapist again tomorrow and talk through how I can come out of this. I’m looking forward to finding myself again and coming to terms with the new me. 

Thank you work family for your love!

Steps

I got a lot of steps in today, around my house. This is a huge accomplishment considering how weak and tired I’ve been. I managed to get dressed again, start my day with broth, and even cook dinner for the family (although side note - when I finished cooking dinner my heart rate was 123! That was equivalent to doing like 100 jumping jacks before, now it’s just standing in the kitchen!). But I’m taking steps to get stronger, in small doses. I am not pushing myself too hard, believe me. I want to get better, not crash and burn. Small steps. 

Crawling Along

My mom said “I feel so helpless, that I can’t do anything for you.” I said she is helping me in so many ways. But I understand. I feel just as helpless. I want so desperately to get better. 

I had high hopes for today. My first goal was to get dressed, which meant going upstairs. That took a lot of energy, so I crawled down the hallway like a cat, taking my time. Mission accomplished. 

My next goal was to set a timer and consume something every hour or so. Well, that was ambitious. My stomach wasn’t ready for that. I tried for almost two hours to eat a fruit cup but my stomach was so unhappy that I finally gave up. I continued to drink fluids and I ended the night with a cup of warm broth. 

Unfortunately because of Covid, my CT scan was postponed until next Friday, but I did get to speak with a hospital nutritionist today, so that worked in my favor. 

I joked with a friend that I feel like I’m in a bubble of despair, and she said it’s not a bubblegum bubble that people can just pop, it’s a plexiglass bubble. You can see me. But if you think I’m doing a victory shout, I am likely screaming out in anguish. 

Nonsense

Listen to these kind words - 

Oh Laurie. You deserve so much better than all this crap. I wish I could make it better. I promise to sit in the nonsense with you

I’ve been feeling alone, isolated, and saddened by everything that’s been happening to me. I have a wonderful support network from my family and friends, but sometimes when people haven’t been through it, it’s hard for them to understand the feelings of frustration, guilt, and despair that come with cancer. And then to get Covid? Really? Kick me while I’m down!

But my friend said, I promise to sit in the nonsense with you, and it touched my heart. It wasn’t a promise to make things better or to cheer me through it, but to just sit with me, and that’s comforting. I could picture us, like two kids sitting in a mud puddle, splashing around, knowing that we’re gonna feel sticky and gross but probably still find something to laugh about…and that brings me joy.

Last night, I just wanted to cry…it was the hunger, fever, and fatigue talking. But this morning I woke up, my shirt soaked because my fever finally broke, and I felt better for the first time in so many days. I felt like I could kind of smile. 

I tried to eat and Matt graciously made me breakfast. I had a few bites and felt satisfied. But as the day wore on, my desire to eat waned again as I felt weak and achy. Everything was an effort. Walking up the stairs rose my heart rate above 100. Bending down to pick up something made me dizzy. It frightens me how hard simple tasks are and how undernourished I am. Now I feel like I could cry again. I desperately want things to change…I’m trying. But it just feels like nonsense, all day, every day. 

Chair-bound & Covid

I slept back in the recliner again last night, partially to isolate from Matt and not get him sick, but also to sit upright so I could breathe. I woke up this morning still with a low fever. At least I got some pet therapy from my resting place. 

I’ve been nursing my fever all day through step 1 of my gastroparesis diet - Gatorade and saltines. Unfortunately the antibiotic started to make my stomach hurt more so I’m going to stop taking that for now until I can put more food in my stomach. 

Matt was holding down the fort and thankfully the kids were busy today and not trapped in the house with me. Dean won first place in his division in the squash tournament and Eviana went skating with friends. Life is good, despite how I feel, which is sick, sad, and lonely, and still nursing this fever!

UPDATE - I took a Covid test just to rule it out and it turned out positive! I’ve managed to avoid it all these years and now when I’m feeling my worst, this happens. Thanks Universe. Message received. 

Endoscopy and Radiation

I started the day at the crack of dawn to get an endoscopy. I was nervous, of course, never having done this before, but the anesthesia kicked in quickly and before I knew it, the nurse was telling me to wake up. I didn’t want to, I was so tired, but eventually I came to. 

The doctor immediately explained that my stomach was completely full, which shouldn’t have been the case; my last meal was over 14 hours beforehand. He diagnosed me with gastroparesis, a slow emptying stomach, which contributed to the pain, belching, and fullness every day. He is unsure why but the chemo likely caused nerve damage in my stomach causing it not to contract and squeeze the food out the way it should. He prescribed some medicine and a special diet. There is another medicine that will help to contract the stomach, but until I get another test done, he cannot prescribe it. The test isn’t scheduled until the end of February! Until then, I have to follow a strict low fiber, low fat diet.

I came home and fell into a deep sleep and woke to a fever. I was so uncomfortable. But I needed to make my appointment with the radiation oncologist. I have a great team of doctors and I’ve been treated with such compassion and kindness. The doctor sat with me and explained the process. I will start with a CT scan next week and then about a week later begin my 16 days of radiation. He explained the typical side effects, one of which includes fatigue for weeks after treatment. 

I have to start thinking about my work life and whether or not I really have the energy to do it. My new diet will keep me undernourished and the radiation will keep me fatigued. For now, I have to nurse this fever, my student may have given me the flu. Lots to deal with right now. 

Answers

That's what I've been looking for, answers. When everyone says chemo is the worst thing you can go through and that I've been through the worst, but each day I still feel my worst, it's not a good feeling. But today I got one step closer to getting answers, I hope. I saw a gastroenterologist who kindly listened to how everything went downhill for me after my surgery. And he even more kindly opened up a time for me to get an endoscopy tomorrow morning. I'm praying that I have a safe procedure, and that soon I will find the help I need to get better, so I can feel like I can start moving on with my life. Please pray that with me.

My last meal until tomorrow... a homemade miso soup with mustard greens, mushrooms, zucchini, celery, snow peas, and rice noodles. Yes, that’s a dash of siracha.