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! 

On the mend

This is what it looks like to be on the mend. I haven’t been able to sleep my best in a seated position but I’m managing well enough between my bed and the sofa. (My bottom hurts from sitting so long)!

Today I didn’t need to take any pain medicine, just ice, which is a great improvement in my mind. 

The hardest part is adjusting. Adjusting physically and mentally to the tighter, bruised skin, two stitched wounds, implant under my skin and catheter in my vein. 

I just want to go back to normal. I want to be able to lift my arm and not feel this thing in my chest. I want to be able to sleep at night and not feel the lump in my left breast and the tug of the implant on my right side. I miss normal but I have to just accept that this is my new normal for now. Makes me sad sometimes. But I’m on the mend. 

The New Do

I met Theresa about 20 years ago. She cut my hair before I married Matt and she and I have been friends ever since. She knows my hair like no one else and has seen every iteration of long, short, and in between.  She knows that the left side and front grow faster than the back, and that my hair gets really frizzy in humid weather. Theresa, a professional colorist, also knew that I would not dye my hair and she loves my grays.  I was growing my hair out and she gave me the most amazing layers at my last visit. 

But today’s visit was about preparing for the future, getting a practical cut that’s easier to manage, especially if it starts to fall out (crying eyes emoji). 

So thank you Theresa, as usual, for making me beautiful! Love you!

Portable

I survived another super tough day. I arrived at the hospital at 6:30 for all of the preparation, checking vitals, etc. I hemmed and hawed for almost two hours about whether or not to accept the sedative. Never having drank alcohol, all of their comparisons fell short (you’ll feel like you drank two beers or a glass of wine). I’ve never liked mind/body altering substances so I struggled with taking something or dealing with the fear and anxiety of this unknown procedure. 

Here’s the before - prepped and ready for the surgery. 

I had an excellent care team. They really tried to put me at ease. I was wheeled into the operating room and put on the table. I was delighted when the music I requested was playing in the background (Justin Bieber!). I thought I could do it on my own, but they helped me out. Because I’m considered “naive” and haven’t ever taken opioids, they gave me baby doses to take the edge off. After the lidocaine came the cuts, the stuffing, and the stitching. My heart rate definitely shot up a couple of times, but I made it through with some jokes and laughs. 

Now I am portable and recovering at home. No heavy lifting, gentle movements and lots of rest. 

Thank you for your prayers, for helping me get through this super tough day!  It was a hard step for me but something I had to go through. I’m so glad it’s over. 

Burnout

Early morning start for my PET scan. I felt very brave, at first. In case you’ve never had a PET scan, let me give you a quick rundown because it was all new to me. 

First the lovely technician took a finger prick to test my blood sugar (103, woohoo!), then he started an IV of saline. I could already feel myself needing to go to the bathroom. Then he returned to add the radioactive glucose into the IV.  Next he settled me into a tiny dark room with two recliners. He put a blanket on me and left me to sleep. I’m not good at sleeping upright but I tried. It was like sleeping in first class on a redeye to London, just without the food service.  Finally I heard him bringing in a new patient.  He set her up on the flight to nowhere, and now it was my turn to get scanned. 

This whole time I was feeling fine, because I've done scans before, and I made it through each one just fine, so I figured, no big deal.  Once the scan began, I closed my eyes and tried to stay calm. The long bed slides you in and out, and frankly I no longer felt like cookies on a tray, but more like a sick dog in the bottom of a boat. With my eyes closed, I could feel myself getting motion sick, but with my eyes open, I could see the tunnel around me.  I started to panic and then panic about panicking, which puts you in a panic loop and that's a challenge to get out of.  I tensed up my thighs (an old fighter pilot trick to keep the blood flowing to the brain) and stayed that way for almost 20 minutes. I gave myself the pep talk of the century and prayed I didn't freak out or move unexpectedly. By the end, I was exhausted and ready to cry from keeping it together so long. 

You can tell, there's no smize (smiling in the eyes). 

I was wiped after and reminded of just how fragile I am and how everything won't be easy, but I still have to do it.  I'm scared because I suspect tomorrow will be even harder, but I have to do it. So I'm gonna go and cry and nap and get over it, and when you hear from me next, I'll have my port in. Please pray for me. 

By the way, I'm radioactive for the rest of the day, no relation to Peter Parker.

Prep Day

This is what getting poked and prodded in your nose and your mouth looks like - tears in your eyes and clean teeth! Covid test, dentist visit - check, check. 

I also had to eat low/no carb and no sugar in preparation for my PET scan tomorrow. I don't know how you keto people do it, but I miss bread, rice, and pasta (sad eyes emoji)!  It's also more of a challenge as a vegetarian, but it's only a day, I can do it.  I've been finding I can do lots of things lately that I couldn't do before.  Now if only I could de-stress with a piece of chocolate (praying hands emoji)!

Thank you for being a friend

If you read the blog title and heard the theme song from the Golden Girls in your head, then I've done my job.  That's what these girls are to me - golden. We've been friends for so long (30 years and 26 years)! We would drive to the ends of the earth to be there for each other and help each other, and that's what they've done for me.  

Lisa See writes in The Island of Sea Women, "No one picks a friend for us; we come together by choice...we tie ourselves together through moments. The spark when we first meet. Laughter and tears shared. Secrets packed away to be treasured, hoarded, and protected. The wonder that someone can be so different from you and yet still understand your heart in a way no one else ever will."

Thank you for the group chat, for listening, for coming to see me and taking care of me, thank you for the love, the laughs, the encouragement... for being a true friend.  I don't have the words to tell you how much you mean to me. I can only say, I love you girls! 

Emotional Support

The weekends are always great to rest and recenter for the week ahead. This week will be a doozy, lots happening, and it will be helpful to have some emotional support. Nothing says comfort like a stuffed bear your daughter picks out for you. 

This week I have a Covid test, a dentist appointment, a PET scan, a port installation, and a haircut. Some of the things on this list scare me, but I’ll have to be brave, with my emotional support bear (and all of you) by my side. 

Dedication

Did my cancer come from living in New Jersey my whole life?

Did my cancer come from being a vegan for 20 years?

Did it come from never, ever smoking?

Did it come from never, ever drinking alcohol?

Did it come from drinking only water, tea and the occasional coffee my whole adult life?

Did it come from years of using natural deodorant?

Did it come from my thirteen years of ballet and six years of intense taekwondo workouts?

Did it come from going to bed on time and getting restful sleep?

Did the cancer come from working in offices and classrooms the past twenty years?

Did it come from the twenty years I’ve been happily married?

Did it come from having a natural childbirth of two beautiful, amazing children?

Did the breast cancer come from nursing both of those children for at least a year?

Did it come from using natural cleaning products around my home?

Did it come from the homemade soap I’ve been using for about 15 years? 

Did it come from never wearing makeup?

Did it come from never dying my hair?

You don’t know where my cancer came from so please don’t send me articles and lists of all the ways people can get cancer. And definitely don’t send me all the ways I can cure it with a healthy lifestyle. You are using this information as a protective shield, to make yourself feel better, so that you don’t get cancer. I get it, cancer is scary, and I pray it never happens to you. But when it comes to my cancer, please don’t. Just send love.

Thank you. 

All Clear

Some great news!  The right breast biopsy results came back perfectly normal, no cancer!  How great to not have to wait the weekend to find out.  I called my breast specialist (on her cell phone, and she answered) and she explained the results to me.  She also said my case was presented at the breast conference this morning at the hospital and all of the top doctors in attendance (about 20) concurred with the plan moving forward.  Next Thursday I get the port installed.  And then it begins.  

Time to start growing...

On the right

Today I had another biopsy, this time on the right. The ultrasound on Tuesday showed a small 8mm spot, which normally they could overlook if it wasn’t for the cancer on the left. It all came full circle when I realized the doctor who recommended the first biopsy was going to do this one. 

Last time, I was so scared, I could barely keep it together. I wasn’t even thinking of the outcome, I was just so scared of the procedure. This time I wasn’t scared. I knew what to expect, the needles, the vacuum, the clip, the mammogram. But this time I was thinking of the outcome, hoping that it’s nothing, really hoping that it’s nothing.

The PET scan is postponed until I can get approval, so next steps are my port installation next Thursday. I have a week to prep my mind for the tough stuff to come. The prayers have kept me calm and focused, I’m so grateful for that. Thank you!

Second Opinions

Ever since I was diagnosed, many people told me I needed to get a second opinion.  They said, "go to Memorial Sloan Kettering, they're the best in the world." Well, I tried.  For weeks.  I won't get into too much detail, but let's just say I left a scathing review on their survey.  They may have great doctors, but if you cannot get a hold of them, and the communication is so poor, what's the point?  I digress.  I finally spoke with a doctor today (over an hour after the scheduled appointment time), and it only confirmed for me that I'm on the right track and that my care team is AMAZING!  I'm so grateful for how the oncologist, breast surgeon, and thoracic surgeon have all teamed up with the radiologists, nurses and pre-cert departments to create a wonderfully smooth experience for me in the midst of such a terrible diagnosis.  I wish this level of care and treatment for everyone, truly.  

Here I am, prepping for my PET scan.

2 for the price of 1

Who doesn't love a good BOGO sale - you buy one, you get one.  Well, how lucky am I that along with my breast cancer, I also get a thymoma.  Yes, you heard right.  Actually, if it wasn't for the breast cancer, I may not have even known about this nearly 5 cm mass growing behind my breast bone, but thanks to all of these scans, it was discovered.  That's how lots of people find it, by chance, scanning for other unrelated reasons. 

So what does this mean? Well, it means I’ll need surgery to remove it. It’s likely (hopefully) a benign tumor on my thymus. It means cutting my chest open and cutting it out of me. (Yikes!) But the priority right now is treating the far more life threatening breast cancer. I should begin treatments as soon as possible, and then later when I cross the threshold into breast surgery, I can potentially have both surgeries done at once. 

Two for the price of one! (That's probably not how the hospital will charge me though!)

This is the blue gown from my ultrasound today.  There may potentially be one small (8 mm) spot on the right breast, but without a biopsy, we won't know for sure if it's part of the cancer clan.  I believe a consult is in order to determine next steps.  

The Days of Yore

Today marks three weeks before I found out about my breast cancer.  Three weeks ago I was blissfully unaware of what was happening inside of me. Three weeks ago I was making summer plans (for the summer of Laurie) and thinking about all of the amazing things I would do in my classroom next year.  Three weeks ago I was having breakfast with my best friend and food shopping for the week ahead.  I had no idea what was headed my way, and I can't help but think about people who lose someone suddenly in an accident.  Suddenly their lives are completely altered for the worst with no way to change it. Three weeks ago, I had no idea how my life would be completely changed. But I press on, not thinking about the future and every potential thing that could happen. I want to be blissfully unaware again, and enjoy each moment, be happy (or sad) in each moment... and enjoying having breakfast without knowing what will happen tomorrow. 

Positive Vibes

A lot of people want to know how they can help, and to be honest, I'm not even sure.  Sometimes it might be some funny memes sent my way, or maybe a meal.  Could even be a shoulder to cry on (although I've been crying a lot less these days). More than anything, I think it might just be sticking to keeping things as normal as possible.  

Then I came across this article this morning and it really hit home.  Take a look at some of the ways you could help me (or anyone else struggling through cancer or other major illness) -

5 Things Cancer Survivors Want You to Know

In the meantime, remember, positive vibes only.

New, new, new

A new month, a new diagnosis, a new recipe. 

Every time I think I know what is happening, I am mistaken.  It's like trying to walk around a new house in the dark, you don't really know your way around, and you trip on that thing you couldn't see.  

I was thrilled to talk to Dr. Lee this morning.  He explained the results of my CT scan in detail.  The good news - only a small 3mm left lower lobe nodule on the lung - too small to be significant!  Great! That means no stage 4, no spread, just the breast(s) and potentially lymph nodes, which is still considered local, which is still a clinical stage 1/2 again.  Double great!!

But what about that mass seen on the MRI?  Oh yes, that.  Well, that corresponds to a large mediastinal mass (yes, you'll need to Google this unless you've been to medical school).  It could be the thymus (yes, that tiny organ you didn't even know you had that helps generate T-cells to fight infection), and it could be enlarged because of thymoma (note to self: any time you see the ending -oma you should pay attention). 

So what next?  This is where having a great care team that supports you and has your back is super crucial.  Dr. Lee connected me right away to the Chief Thoracic Surgeon at the hospital and within 10 minutes of finding out all of this information, I was scheduled for his first appointment Tuesday morning!  

I will also need a PET scan.  Yes, one more time pretending to be cookies on a tray.  But I'm getting braver with this stuff...I think.  I just scheduled it and if I'm a cookie, then I will be burnt.  This is a two-hour bake, so maybe more like a small roast turkey. 

Speaking of good foods, this is Dean trying out a new recipe.  He and I made zucchini lemon pancakes for breakfast. 

I have wonderful things happening around me, I cannot be sad.  I am seeing miracles happen every day and they are like a sweet hug embracing me and pulling me through each moment.  

"Mud is where the flowers grow."  Let's get dirty my friends. I want to grow.