Stepping Outside Our Bubble and an Arm Update

These last years, I have been BUSY...either traveling or looking forward to traveling. With this abrupt slow down, I realize how important it has been for my peace of mind to have fun trips planned. It's a tool that has always gotten me through the gray days. Since the big trip I'm dying to take is on hold, I've decided that I still need to make mini-trips a priority. Even in this age of Covid. Even when I'm undergoing treatment. Mental health is important, too! I'm also realizing how important it is to take advantage of these days when I'm feeling GOOD and my appetite returns to give myself permission to eat whatever strikes my fancy. There has to be perks to this chemo deal.

To that end, yesterday, Zack & I drove 45 minutes north and took the ferry to Whidbey Island  to have lunch at our favorite pizza place in the world: Village Pizzeria . It checked all of the boxes that needed checking: a safe trip, beauty at every turn, incredible weather, special time together, and delicious pizza!

It's so fascinating to see how much has changed during this crazy time....no traffic, most people in masks, orders to stay in the car on the ferry. It feels in some ways that we've stepped into a dystopian world. How can the world have changed so much, so quickly? I know it's a feeling we're all sharing.

At the same time, it was heartening to see the positive adaptations that have been made. We were able to get our pizza at the walk up window and take it down to a picnic table on the beach. Our only lunch companions were some baby bunnies snacking nearby. We wore our masks around town. Even the statues had masks. 

The mountains were still out, the eagles were still flying by, and the flowers were still blooming. And the pesto pizza was as good as we knew it would be. How reassuring.

It was such a restorative day.

 I recommend this day trip to all locals!

(And if you go, I want to hear all about it!)

As beautiful as it was, I am counting on this, in a myriad of ways.

~~~~~

Today I had a follow up appointment and X-rays with the orthopedic doctor who said my arm is healing faster than expected! It has been four weeks since that fateful day and he said the healing looks like they would expect it to at six weeks. I was so hoping he'd say this since I've felt like it was doing much better. I will wear the compression brace for another four weeks and will start physical therapy for it soon. It makes me feel in awe of how our bodies can heal after trauma...how my body has healed in these last four weeks with all it is going through.

Tomorrow is my 3rd infusion. I will meet with the oncologist and we will schedule the mid-way MRI to see how the chemotherapy is working. I am excited and terrified for this test result all at the same time. Most of all, I am hopeful. If there is such a thing as willing good news into reality, I am on top of it.

What is this flower?! I want to plant it EVERYWHERE!

So thankful to each of you...

for your love, support, and encouragement. 

❤️

The Reality of Chemo and a Poem

I'm so happy that I wrote all of those first posts when I had the energy....because right afterwards I was swept up in the aftermath of the 2nd chemo swimming around in my body. The week has been a blur of feeling really crummy. Not myself at all. Too much time in bed. Not sure where my discomfort with the chemo ends and the pain of my arm begins. Ugh. 

But, today (day 10 post chemo), I woke up feeling so much more myself. Like the sun coming out after the rain. I guess a gift in this process is truly appreciating "simple" things, like feeling WELL, with such awareness.

Now I have 11 days to enjoy feeling better till the next round. I keep thinking of an image of a boxer. You get knocked down...make it to your feet and hold steady till the next knock down. What a process.

Thanks to all of you who have reached out after reading here. I can feel your loving energy and it truly means so much to me (and all of us!).

~~~

I was recently gifted this beautiful book of "blessings" by John O'Donohue. So many of them are treasures and this one on courage feels applicable to all of our lives during this upside down time, so I wanted to share it here.

When the light around you lessens

And your thoughts darken until

Your body feels fear turn

Cold as a stone inside,

When you find yourself bereft

Of any belief in yourself

And all you unknowingly 

Leaned on has fallen,

When one voice commands

Your whole heart,

And it is raven dark,

Search and you will find

A diamond-thought of light,

Know that you are not alone

And that this darkness has purpose;

Gradually it will school your eyes

To find the one gift your life requires

Hidden within this night-corner.

Invoke the learning

Of every suffering

You have suffered.

Close your eyes.

Gather all the kindling

About your heart

To create one spark.

That is all you need

To nourish the flame

That will cleanse the dark

Of its weight of festered fear.

A new confidence will come alive
To urge you toward higher ground
Where your imagination 
Will learn to engage difficulty
As its most rewarding threshold!

❤️

Happy Mother's Day

Where do I begin on this Mother's Day?

During this crazy time for Mom and I...one thing is sure: this experience has brought us even closer than before (and I didn't think that was possible!) How ironic that when I moved in with her in February it was with the intention of helping to take care of HER and now the tables have completely turned. The universe seemed to have a plan for us...and it was that neither of us would be alone as we went through our cancer journeys. 

For that I know we are both so grateful.

Thanks Mom, for getting up and bringing me coffee and juice in bed each morning, for being so patient with Rosie and Leo, for letting us take over so much of your home. For helping me at every turn: both emotionally and physically.

Thanks most of all for modeling such strength and grace during difficult times...and for passing down your pragmatic way of coping when life throws us curve balls...for finding the humor and savoring the little things, for being YOU. I am so, so lucky to have you for a Mom!

My mother's gifts of courage to me were both large and small. 

The latter are woven so subtly into the fabric of my psyche 

that I can hardly distinguish where she stops and I begin.” 

― Maya Angelou

And to Aidan, Isabel, Eli, & Zack, 

know that I believe this with all my heart:

Happy Mother's Day 

to all the beautiful Mothers in my life!

❤️

Chemo #2 and the Big Buzz

Now, I'm getting caught up! Whew!

Which brings me to: my second chemo yesterday.

All went well. I had a front seat window view and it took 5 hours. I met with my primary oncologist for the first time (Dr. Modarressi) and he was encouraging. My arm was a pain but I expected that. I worked on my computer, listened to podcasts (thankful for the noise cancelling that helped tune out the hospital noise), napped for a bit...and before I knew it the time was up.

Zack was there to pick me up.

We celebrated with a Bubble Tea.

Earlier in the week, my hair had started falling out. My scalp had felt tender and that night, It just came out constantly. When I took my headphones off after chemo, they were covered in hair. As was my chair. I couldn't believe it was time already. But it was. So, we didn't waste any time.

Going for the glamorous, gypsy, stormtrooper look.😉

And that is that. It feels very odd. I liked my short pixie cut much better. Han says I'm really pushing the whole aspiring to be like Pema thing a little too far. Ha! 

But, I do feel like it's a continuation of the learning

--and letting go--

I've been doing these last years: 

I am not my role. 

I am not my house.

I am not my things.

And now:

I am not my body. 

I am not my hair.

It's like peeling an onion. 

Underneath it all, I am always me. 

More and more me.

❤️

Chemo #1 and an Unexpected Bad Break

These first few posts are a little jumbled time wise and going forward I hope to write as it happens but this is the nature of getting started. 😉

So, on April 17th, I had my first (out of six) chemo treatments. Having taken mom in for her treatments, I really had a jumpstart on what to expect. Usually, infusions are given in an infusion room with lots of chairs set up looking out the windows...but for my first time, they wanted to go extra slow to monitor for allergic reactions so I was able to get a private room with a bed, which felt like a luxury. The nurse I had was extra nice, having treated mom her for immunotherapy the day before. I don't think they come across a mother and daughter in treatment at the same time very often (thank goodness) and in some ways it is humanizing our case to them, which can only be a good thing.

The treatment I am getting is called: R-CHOP. It is very effective in treating my form of lymphoma. I felt for my body, not knowing what was about to hit it.

I brought in reinforcing supplies and felt the love from family and friends holding me in their heart as I started this treatment that nobody wants to experience.

The treatment itself was not hard, physically. It was just a lot of crazy stuff put into my body at once. In addition to the infusion, I had to swallow so many pills and go home with a chart of what to take when and carefully track it. Having barely taken medicine before, it felt like a real assault on my body. But, one I knew was my best chance of getting better. Emotionally, it was a very big deal. I still felt partly in denial to find myself in that position.

They told me that it usually takes 2-3 days for the effects to fully hit and that everyone responds differently so you can only wait and see. I ended up feeling like an anthropologist in my own body. I was in total observation mode, wondering about every new and unusual feeling. My treatment was on a Friday and by Monday, I started to feel the heavy grogginess and overall "yuckiness" that everyone I've talked to who has had chemo says is so "hard to describe". The anti-nausea medication did a good job of keeping the nausea at bay (which was my worst fear) but for 6 days I felt pretty crummy: no energy, no appetite, when I could eat food tasted flavorless, and the hardest part was how easily I got dehydrated. I had to go to the toilet constantly (which they stressed is a good thing...to help my kidney's flush out the cancer cells that were dying at a rapid rate). This was especially hard at night when it was really hard to fall asleep again after waking up over and over and over. I learned to drink a glass of water regularly whether I felt like it or not and this helped a lot. I had to gauge how long and frequently to take the anti-nausea medication, which had its own side effects. But I was very worried about "getting behind it". It's all such a learning curve! 

The hard part in this situation, is that unlike the flu where you feel awful but know that you will get over it and feel better--with chemo...you know you are going to have to go though it over and over again. In the midst of feeling so bad that felt very overwhelming.

At the same time, Zack made sure I walked every day, even when I didn't feel like it (and sometimes the boys came over and joined us).

Mom made sure I ate something on a regular basis and did everything she could to cheer me up. 

Han & I continued to video chat several times a day and the photos he sends me each day continue to open up my world. My life over there feels alive and well and I feel close to it -and him- thanks to the magic of the internet (and 💕 ).

Since I'm writing this in hindsight, now I feel stronger about it. Knowing the worst part was really the first week and that I could look forward to two weeks of feeling better and better between treatments felt/feels doable.

~~~~

On the 15th day after my chemo (4/30), I was feeling really good. The kind of good you can only feel after feeling REALLY bad. Eli had stopped by for a visit and I had so much energy, I thought I would make a little lunch for everybody...which was a huge step after being served for the last couple weeks. I was feeling so happy to be feeling so well. I was moving too fast. I had just handed them their plates, headed back into the kitchen, and caught my foot on the step up. A step, I've made millions of times successfully. I fell and fell hard. I couldn't catch myself with my bad arm (the one with the tumor in it that has been hurting for the last 8 months). I just fell. And I heard the crack and felt it immediately. The middle of my right arm, the arm I'd already been babying since August, was not working the way it was supposed to. I'd never felt so much pain.

We called the aid car. They got me set up to make it to the ER. Eli drove me. I was in such pain. X-rays were excruciating. It turns out I fractured my arm in two places. One, up top, on my shoulder. And a giant break in the middle of my humorous.

That explained it. The doctor working said it was bad enough that she'd usually admit me to the hospital for several days for pain relief alone but because of the virus they would do anything to avoid that with my compromised immune system. She wanted to send me home with pain medication to see if I could make it on my own. That felt daunting. I ended up leaving with just a sling (which wasn't nearly enough to stop the bone from shifting and causing pain) and some heavy duty pain medication. They said I'd come back in a week to follow up with an orthopedic surgeon. 

Zack and Eli were both waiting to take me home. They were so calm under pressure and took such good care of me!

Luckily, when I got home I contacted, my guardian angel, Dr. Chun, who was my "squeaky wheel" once again. He got me into the orthopedic office the next day. They put on a much better compression brace that made all the difference. I can't fathom if I'd had to go a week to get that. I'm still processing my feeling of PTSD over how that whole situation was handled.

Even with the brace, I needed a ton of help. Zack had to set his alarm several times a night to give me the medication and to help me to the bathroom, which was a 20 minute ordeal. I felt (feel!) full of angst at how I managed to make an already hard situation SOOOO much harder. If only, if only, if only.

And yet...here I am...one week later....and again, the pattern of healing is showing itself. Already, I am feeling stronger. I had follow up X-rays done yesterday and they said it was holding steady in place, which is really good news. My arm is still so painful but the rest of my body is learning how to adapt and compensate. I can get out of bed on my own. Zack can sleep through the night. In one week! I never would've guessed it. They said if I wasn't having chemo they would want to treat it surgically by putting in pins but it is not an option for me at this point. They are hopeful that in about 12 weeks it will heal itself. I have 15 weeks of this chemo process left so it basically will be a side by side journey. What the heck?! 

I've been thinking about this podcast a lot from Rob Bell where he talks about how life comes in waves. It's so true, isn't it? And I do trust, for sure, that the giant, scary waves come...and then they go. And sometimes we can feel upside down with the pummeling...but we can trust that if we ride them out, we will come out the other side in one piece. And there will even come a day when the sea is as calm as can be and we can't even imagine that once there were giant waves crashing in this very spot. I trust this pattern...and that makes all the difference. Even when I'm in the thick of it. It's so interesting that when the giant waves sneak up at first, the self-talk is so strong and predictable, "I'm not strong enough for this. I can't do this. This is too hard. This can't be happening." And...then, before you know it: you adapt. It doesn't stay so raw as it is in the beginning. The pattern has shown itself to me so repeatedly and clearly these last weeks. I am so thankful for that!
❤️