Finding the Right Words

Disappointed is not the word I'm looking for.  It's something else.  I can't quite put my finger on it. 

I've been super busy this week trying to get my classroom in order - it's a scary prospect!  But I've been taking advantage of these healthy days to get as much done as I can. 

Then I went to taekwondo tonight and it felt amazing.  The workout made me feel strong and the forms challenged my mind and pushed my limits.  This man right here, Grandmaster Yoo, is one of the most encouraging people I know. He's an 8th Dan (degree) black belt, which means he is in the elite top .05% of masters in the USA and the top 1% globally! He has so much he could boast about - his successful schools, his beautiful family, and yet he is incredibly humble and has a heart of gold, waking up at 3 am to feed the homeless, taking mission trips to Haiti to build homes and schools, and collecting toys each year for children in the cancer ward.  Each class he reminds us that nothing is impossible and to do better than what I'm doing right now.  I was inspired and on fire.

Then I spoke with a classmate and it turns out he works in the oncology field. He asked me about my diagnosis and spoke about the immunotherapy drugs I'm taking.  He was very encouraged because he said this is a great track and I will be totally fine. The research shows survival 10-15 years out. 

I nodded my head, I agreed, I was encouraged. And then I got in the car and gave that some thought. Wait, 10-15 years? I know he said those numbers because these treatments are relatively new and the data doesn't go that far back, so I get that part...but those numbers made me feel...uneasy.  I want more.  I want to live.  Just like Grandmaster Yoo, I have so much love to give to the people around me, to give back to my community, and to my family and friends. 

So I sit with these feelings.  It's not disappointment, that's not the word. It's an uneasiness, about how hard this will be, about what it'll take to get to the other side of this, about how long I have to live.  It's more than just losing hair (which sucks by the way)…it's losing a little bit of joy mixed with a little bit of grief.  But never losing hope.  Never. 

Self Care

These healthy days have taught me a lot about self care. First of all, I’ve had the energy for self care! And I’ve also had time to reflect on what’s coming next week. I have been preparing myself mentally and physically for the next infusion and the potential side effects, like buying ice pops for my sore mouth or epsom salt for my sore bum! Today was the first day I didn’t have diarrhea in over a week - I know that’s TMI, but it’s also progress! 

I’ve also been working diligently on my skin, trying to combat this breakout. I visited the dermatologist, put a plan in place to fix it, and it’s slowly clearing up. And the glue has finally worn off and I can see my port scars. More progress! 

And it’s been exactly two weeks since I cut part of my finger clean off…more healing and progress!

So I’ve been using these days to get ready, like I’m heading into battle. Exercising, eating, and prepping my home with all the knickknacks and ingredients for self care. As I prepare my heart and mind, your thoughts and prayers fill up that space and they are always appreciated! 

Getting Stronger

I have really come back into myself these past few days. My strength has been returning and I’ve been finding ways to get stronger. Research has shown that increased muscle mass and exercise are helpful in metabolizing and managing chemo, so I’ve been using these healthy days to workout. 

Today I lifted weights and went for a 7 mile bike ride! It felt so good to be out biking again, I missed it! Even though the summer heat is unbearable, I will continue to workout as much as possible before my next treatment. And my shirt is a good reminder for us - faith over fear!

Taekwondo Thursday

One of the things I’ve been dying to get back to from my regular life is taekwondo, and today I finally made it! It wasn’t a long class but that worked in my favor because it eased me in slowly. I didn’t need to get through a grueling workout and I practiced my curriculum, all while keeping an eye on my heart rate. I wasn’t tired or overwhelmed, it was just right and I couldn’t be happier. 

It felt so great to rejoin my community of dedicated martial artists, and to see my Grandmaster again. He and his family are praying for me, and now my fellow classmates have joined in sending me well wishes too. 

As Grandmaster Yoo says - Nothing is impossible! 

Believe! Persist! Achieve! 

Here I am back in 2020 earning my 1st Dan (degree) black belt!

My hope is that I can be strong enough to continue training and hopefully test for my 2nd Dan this fall. It’s a long shot, but I believe that anything is possible! 

Busy as a Butterfly

For those of you who know me well, I wouldn’t be as busy as a bee. I’m scared of bees!

But I’ve been busy nonetheless. I’ve been slowly coming out from under the cloud of chemo side effects. 

My visits to the bathroom have been getting under control and I’m trying to manage my skin issues. My eating is still a work in progress with a sore mouth and everything still tasting pretty terrible. 

My energy is coming back and I’m able to do more things like driving around and shopping. It feels good to get back to “normal,” whatever that is. 

So I’ve been as busy as a beautiful butterfly, emerging out of my chemo cocoon!

Coming Back to Life

You must be thinking, oh she’s getting better. Well, yes and no.

I had a visit from my niece today who just graduated college. She came to help stretch me, which was like unraveling a 90 year old slinky from all the days I’ve been huddled on the sofa in pain. She brought me back to life!

And I visited the oncologist today and everything looks normal, so that’s good. 

But I also visited the bathroom today more times than a hotel housekeeping staff at a five-star hotel! That was not pleasant at all. I invested in a sitz bath to heal, if you know you know. 

And the post-chemo acne is something straight out of horror film. 

So, sure, I’m getting better in some ways. The doctor insinuated these will be my best two weeks, before I go back and start the process all over again. (face with spiral eyes emoji)

Changes

I was a vegan for over twenty years before Dean was born. Then I began adding meat and dairy to my diet, not because I loved it, but just because. Sometimes it made meal planning easier, or eating out easier. But last summer I decided to change back and cut out the meat. So I’ve been vegetarian for about a year now with no regrets. 

Except for today. 

I’ve been dealing with a burned out throat from the indigestion and reflux and nothing quite tastes right. 

I craved something different. Something salty. 

So I made a turkey BLT. Unfortunately it hit the spot. But I can’t get mad at these changes. I can only do my best to nourish myself and manage these post-chemo vibes. 

Like the post-chemo acne. Bummer. 

Every day is a new surprise, but I’m glad to be alive to experience it. That’s the best part. 

99 Degrees

99 degrees. When your body temperature matches the outside temperature. 

Is this my dip? Is the the nadir the nurses told me about? 

For days I was feeling fine. Then the indigestion yesterday, like something out of a torture film. 

And the headache today, more like a migraine where moving makes the room spin. 

And the body aches, like a flu where all my muscles and joints hurt, but without the fever. 

I stayed in bed all day. I hardly ate today. I spoke with the doctor who told me this is perfectly normal. This is my low point and it may stick around for me for a couple of days. 

So I need to just get comfy with an ice pack and keep resting. 

See you on the other side. 

Summer Break

Summer break for a teacher is nourishing for the soul. I could go on and on about the difficulties of teaching, especially during a pandemic, but unless you are in the trenches and experience the physical and mental work that it entails, the description of each battle does not do justice to the magnitude of effort involved. Each grade has its own set of challenges, and this year my challenge was kindergarten. What a blast, day in and day out, seeing those beautiful young faces light up to learn new things each day. Seeing them grow as readers and writers was remarkable. But to get them there required undivided attention to every detail all day long. It wears on you and tires you out like nothing ever will. People who spend a few hours with a five and six year old can only fathom the energy it takes to be with twenty!

This is not complaining, this is simply drawing attention to the importance of the work that we love so much. Just because a teacher needs a break does not mean they do not love what they do. It means they worked harder than anyone can imagine and they put their all into these little lives, teaching, nurturing and protecting. And now they need recuperation, to build up the strength and energy to do it all over again! 

Now back to our regularly scheduled programming…

Care receiving

I boasted about my parents yesterday, about their amazing caregiving. But I have to flip the coin to talk about care receiving. It’s not always easy. It’s not like asking hubby for an occasional glass of water. It’s much bigger, more vulnerable. 

I came across this scripture today and there is power in these words. 

“But [God] said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong” (2 Corinthians 12:9-10).

No one wants to feel weak or helpless or powerless. Not driving on my own has stripped me of a fundamental feeling of freedom, and I feel sad when I can’t do things on my own or worry I might get hurt without supervision. But I must accept this state of weakness, not only so that God’s strength can be revealed through me, but also so that caregivers have an outlet for their love and desire to help others. It ties us together in balanced and magical ways, in a community of givers and receivers. It should feel just as good to give a gift as it is to receive it. 

So again I sit here, grateful for all I’ve been given, even my weakness, so that I may boast. 

And in an effort to pay it forward and care for my littles, regain some of my strength, and bring me back to my place of meditation and joy in the kitchen, I present brown rice three ways. 

Post-infusion #1

Today was post-infusion day and there is always a lot of concern after chemotherapy treatments. How would I feel today? Would I be sick? Tired? Well, it was actually a really lovely day and a blessing to my soul to experience it in such a positive way. 

I woke up with the sun, which I was not excited about because I did not get to bed early last night. But I was able to take a walk with these two awesome people to the local coffee shop and have breakfast together. My parents have been by my side throughout this whole experience, with tears, hand-holding, and a gentle compassion. They have helped me with the children, cooked me meals, chauffeured me around town to my appointments, and cleaned my house. Often people don't see the invisible caregivers behind the scenes, so here they are front and center for your admiration and praise, taking such good care of me day in and day out.  They deserve an award, but for now, I can only give them my genuine love and unending gratitude.   

The short walk to the coffee shop was a shift for me...that heart rate thing I experienced the night before lingered. I found my heart rate down low to 60 when I was sitting still and shooting up to 130 at a decent-paced walk. I found myself exhausted after expending just a little bit of energy, so I listened to my body and spent most of the day here, cuddled up on the sofa with a blanket and bear. I took the hardest nap I have had since probably my teenage years, it was amazing! The only other symptom I experienced was a little bit of dry mouth this morning, but no other symptoms I am happy to report, and my heart (despite its fickle behavior) is full of peace and joy! Your prayers and mine have been answered!

I nurtured and nourished my body with good food, homemade soups and smoothies and lots and lots and lots of water!  I left the house again for my shot of Neulasta, a bone marrow stimulant to boost white blood counts to prevent infection, and in my final efforts to care for myself for the day, I hopped over to Urgent Care to get my finger wound cleaned and rewrapped.  I could not have asked for a more peaceful and productive day.  Thank you as always, for listening, for checking in on me, and for your prayers. I am overwhelmed. 

One Down! Five to Go!

Truly the finger cutting was a big distraction for me.  I was not nervous at all to start today, despite all of the nervous build up to this day.  I got to wear my new chemo shirt from my friend, thank you!  And my cute cat socks from my friend, thank you!

I arrived at the office for bloodwork to check my counts before starting.  I didn't go to the correct phlebotomy room so they thought I wasn't there and gave the large window room away.  Lesson learned. 

I met with the oncologist who shared with me the results of the PET scan. He was pleased to see that there was no significant activity in the lymph nodes. He did note that the thymoma was a hot spot, but of course there is nothing we can do about that now; we'll address that many months from now, and I agree with his suggestion to compartmentalize that in a separate part of my mind for now. 

Finally I made it back to my room (#1) and the nurse attached the IV to my port which I was scared would hurt but instead was a tiny prick and the needle was in the button. Amazing!  I was given a cocktail of Benadryl, anti-nausea and anti-diarrheal meds to stave off any reactions.

Next, I began the process of cold capping.  For those of you not familiar with this process, the idea is to freeze the blood vessels to prevent the chemo from getting to the hair follicles in order to prevent hair loss, similarly with hands and feet to avoid neuropathy or nerve damage to the extremities. There are no guarantees, of course, but it's certainly worth the effort to potentially spare myself complete hair loss. 

I had to wet my hair and put on a cap filled with a liquid that is hooked up to an air-conditioner-like machine and the liquid is kept ice cold on my head. I then put on a neoprene cap to keep it in place. 

I'm ready for my water polo match!

I put on my ice mittens and ice booties, warmed up my seat and covered myself with a nice blanket, thanks my friend.

Finally the long process began - one hour for the first med, one hour for the next med, one and a half hours for the third med, and one hour for the fourth med, followed by a one hour observation!

I had some wonderful family and friends keep me company in rotation, and the great news is that by the end of it all, I felt totally fine!!  I didn't have any aches or pains or sickness, what a blessing!!

I came home to spend time with my family and friends, peacefully sitting on the sofa and was even able to eat a proper dinner. I made the trek to CVS to get some OTC meds to help me if things go awry, and I definitely felt the challenge.  I could feel like I was not putting in much effort, but my heart rate going up.  I shouldn't be surprised, but it was a good warning not to push myself too much!  So tomorrow I will take it easy, try to move my body as much as I can to keep up my strength, watch what I eat, drink plenty of fluids, and continue to thank God for this first day and the challenge overcome. Thank you for your prayers of faith, thank you for the prayers of peace and courage that helped me to get through this! Thank you!

A slice of life

Sometimes you worry so much about stuff and it takes a while to snap out of it. Today I had to take a steroid to prepare me for the chemo tomorrow. It didn’t make me feel like Hulk Hogan. Instead I was queasy and tired, but I still took the time to cook, bake, clean, and pack my bags for the weirdest trip ever. 

Then as I was preparing more apple slices for dehydrating tonight, I sliced a piece of my pinky clean off! What?! Like a small slice of prosciutto! Talk about kick me when I’m down! I couldn’t believe it, it was so surreal! I spent more than 15 mins holding that blood back but I was cool as a (sliced up) cucumber! 

As if I needed one more thing to happen…at least it took my mind off tomorrow, it gave me a ridiculous story to tell, and it gave Matt a mini-heart attack! All in a day’s work!