Post-Infusion #3

After my last infusion, I had a whirlwind date day with my hubby. It was wonderful, but I was going all day. Today I wanted to get lots of rest…best laid plans. I began the day with a hearty breakfast because I knew my appetite would shift soon (I can already feel my taste buds changing and the stomach pain makes eating a challenge). I present a delicious platano omelette - 

Next I took my daughter to get her first layers, they look amazing. 

After a quick run to Target for some essentials, it was back home for a smoothie and a nap. I crashed hard again, like those puppies and kittens who go comatose in a random position and can’t be moved.

I walked with my parents to the doctor’s office for my Neulasta shot and after a quick trip around the block, I was back home ready to rest. 

All in all, I got in over 9,000 steps! I’m wiped, truly so exhausted I can barely keep my eyes open. But not too tired to add a little sparkle to brighten my miserable disposition! Good night all! 

The Halfway Mark

When I was a kid, I distinctly remember not wanting to go bed at night. My mom would stay up to watch tv and I would sneak next to her on the sofa hoping she wouldn’t notice me and watch tv too (she would of course notice me… during commercial breaks!).  The term for this is FOMO; I didn’t want to sleep because I didn’t want to miss out on anything. Lucky for me the steroid I take before my infusion gives me energy and keeps me up at night. So what do you do when you’re awake at 3am? You read about Mike Tyson. For some reason he came to mind and I will never forget one of his most famous bouts. It was the summer of 1988, I was 10 years old and staying with my aunts, uncles and grandfather in Manhattan. There was soda and food on the table and the excitement was palpable. Mike Tyson was only 21 years old and he managed to knock out his much taller opponent in only 91 seconds! It was the most expensive fight in history at the time and the fastest knockout! Everyone was screaming and raving about this fight for a long time. I’m not sure why this was on my mind, maybe because I feel like I’m fighting. I wish I could knock all of this out of me in 91 seconds, but no such luck. I will keep fighting nonetheless, no matter how many rounds it takes.

So here we go, round 3. I’ve reached the halfway mark! Three down and three to go!

My mom got me set up with my icy apparel. Then she went home so I could take a sweet IV Benny nap (Benadryl).  I came home to some delicious chicken noodle soup. 

After resting at home and making dinner for the family, I decided to go to taekwondo, to get my stripe tape and learn new curriculum. I took it easy, not overdoing it, and I feel good. Hopefully the exercise will help metabolize the chemo and put me in a better place in the coming days. 

Then I closed out the night with a bowl of yogurt and fruit!  Fiber, exercise, and water do a body good! You should try it! 

Race Against Time

I’ve been feverishly trying to put my classroom together before my treatment tomorrow. Days and days spent cleaning, arranging, assembling, sorting, filing, labeling, all while fighting that ticking clock telling me to hurry up and go home to my family, telling me to not be a perfectionist and leave well enough alone. I did all that I could do. And yet I still struggle with the “letting go” part, the part that pushes me to do my very best all the time…at the expense of myself. But I’ve been urged, exhorted, pleaded with to put myself first, to heal and get better. I’ve been reminded not to come in, to stay home and rest my body. I hear you my friends, I hear you loud and clear, that time is around the corner. Soon I will park myself on the sofa, relinquishing myself to the rest and acknowledging all the things I can’t or shouldn’t be doing with an semi-accepting heart. 

In the meantime, I present to you, the best I could do with the time I had. Ta da. 

Two Camps

When I tell someone I have cancer, I find the reactions are divided into two camps. The first camp is overly sympathetic and grieving for me that this disastrous thing has befallen me. The reaction usually stems from people who’ve been touched by cancer, usually family or friends, and the results were grim (i.e. death). The other camp is warm and kind but relatively calm about the whole thing, having gone through the experience with a loved one that resulted in a cure. The response is usually, “you’ll be fine, you’ll get through this just fine.”

I don’t know what the appropriate response should be, but it was just a curious observation for me. I sit somewhere in the middle. I don’t have complete reassurance that everything will be “just fine” but I also don’t feel like it’s the end of the world. I’m not some sort of superhero overcoming insurmountable odds, but I’m also not breezing through this like it’s just a regular Thursday. I’m sort of hanging in the balance, weighing both sides each day and praying for the best at each turn. That’s all I can do at this point. 

By the way, I bet you didn’t know that I’ve been rocking head scarves since infancy! 

Warrior Spirit

I have been living these healthy days to the max, just like the last time - working on my classroom, lunch dates with Matt and my mom, and of course, taekwondo training. On Tuesday I was able to prove that I was ready for testing, and tonight I tested for my next stripe. I’m one step closer to earning my second degree black belt, which will be the test of the century when I get there, but this warrior spirit inside of me pushes me to do better, to be better. I succeeded tonight, and as I approach my third treatment next week, with some fear and trepidation of the side effects again, deep down I know I can make it, I can fight through. I’m a lot stronger than I look. 

Cancer Card

Now don’t be jealous, but I have a Cancer Card. And yes, I plan on using it! It’s sort of like an Amex Black Card, it’s invitation only, and my credit is unlimited. Be glad you didn’t get the invite. 

Insurance

Let’s talk numbers. How could a person without insurance survive cancer? I honestly don’t know, but I’ve read horror stories of people losing their jobs and houses because the cost of cancer treatment is astronomic, yes, larger than space itself. One visit for treatment is almost $35,000! Now multiply by six. That’s over $200,000. That doesn’t include the heart scans ($2,000) or the port installation ($13,000). Not to mention the surgery ($?????)! We could have a much larger conversation about the American health care system, or about private insurance and jobs in America, or about the many inequities, but we would be here forever. 

My only takeaway right now is my immense level of gratitude for very good health insurance, for without it, I’m sure my pain would be doubled and tripled by the heartache of medical bills on top of cancer. 

Cry Me a River

I was sitting peacefully at my desk writing some letters. I put on some meditation music and settled in. I wondered something but I couldn’t quite jog my memory about it so I got on my phone and started perusing LinkedIn for some clues into what my mind was looking for…that’s when I stumbled upon a post by a mother who lost her four year old son to cancer. She recounted her last moments with him, holding him and singing to him, and before I could even finish the story, my eyes started gushing a river of tears. I was slumped over my desk heaving and attempting to dry my eyes. It was like the floodgates had been opened and I couldn’t hold back the water from rushing out of me. 

I haven’t cried in, well, I lost track of how many days. But I’ve always told Matt, never hold it in, let it out so the pain doesn’t torment your body. So I cried, and cried, and cried. I cried about cancer, I cried about food, I cried about being able to still hug my children, I cried about work, I cried about my hair, I cried about so many things, and I realized I needed it so badly. 

Don’t hold in that cry, for fear of embarrassment, and don’t tell yourself you don’t really need it, because you do, trust me. 

The New Do, Part 2

If you had asked me a month ago if would cut my hair very short, I would have said no. But necessity is not only the mother of invention but also the hand that forces a move. I am glad that I did it in stages. I couldn’t dive into the deep end right away. While I’m so grateful to still have most of my hair (the oncologist said clearly the cold cap is working), it was shedding a lot and I needed it to be shorter to better manage it. 

So off for another chop! Thank you Theresa for all of your hard work! This was a tough one!

This is the shortest I’ve ever had it, and frankly I don’t recognize myself. Leave it to cancer to force me to change and reevaluate myself all over again. Who am I? What do people see? How do I present myself? Is this really me? Yes, I’m the same person, at least I think I am, I just look different, and look at the world a little differently too. 

Hair today, gone tomorrow

I know, this isn’t just about hair. And anyone who is not going through cancer will be quick to say “don’t worry, it’ll grow back” (by the way, please don’t say that to someone). 

It’s about looking at myself in the mirror and not recognizing myself. Seeing my sunken eyes and receding hairline. Floating through the day hungry and tired, willing myself to be normal but wanting to scream and cry instead. 

I get mad. I get sad. Sometimes it’s about food (lately it’s been about food) and sometimes it’s about my hair. And I’m allowed. 

So thanks for letting me vent, because sometimes writing is like screaming and crying into the abyss and helps me feel (just a little) better. 

A Day of Rest

Saturday has always been my favorite day of the week, a day of rest like no other. Today was my chemo sabbath, my day of rest apart from everything. I see the pattern emerging, today is my low day, when I feel my worst. 

And so I’m called to rest.  

I hope you found rest too. 

And Many More…

I could groan on about the reflux, the constipation, the food aversions, and the mind-bending fatigue. But today was about celebrating Matt. This is why I do this, to be with these people for as long as possible. I love them with my whole heart and I want to spend as many birthdays together as possible! 

Happy Birthday my love! And to many, many more! (sorry it wasn’t without drama)! 

Food Fight

I started out the day with some stomach cramps (thankfully I managed to sleep most of the night, but only on my left side). I ate a hearty breakfast with toast and an egg, and later I drank a cold-pressed beet juice. But the stomach pains did not subside. I made a delicious lunch of arroz con habichuelas, at least it looked delicious, but it tasted like nothing. I’m sad that my taste buds have already betrayed me so soon after treatment. 

I was dead tired again, so I took a nap with my trusty sleeping cap, which my mom says reminds her of Little House on the Prairie. I can see the resemblance! 

My family was able to eat a delicious meal from Tacoria (thank you my friend!) while I nibbled on bread again (sad hungry face emoji). Food is a source of deep emotion for me, so not being able to eat and enjoy my food feels like a divorce from myself, so foreign and unhappy. But until I get this reflux under control, food is my enemy right now. I can only work to nourish my body and continue to rest and heal. 

Post-Infusion #2

Based on how I felt last time, I thought today I would feel ok, and for the most part I did. I had a whirlwind of a date day with my amazing husband Matt. We hit every stop today - first to Whole Earth to buy new grocery bags, then to Barbour to buy him a new jacket for his birthday. Next we hit up one of my favorite places - the Somerset County 4H Fair! I love visiting with the animals!

And he loves the funnel cake!

Then we had Thai for lunch at our favorite restaurant in Somerville (I could only eat a small amount of it, unfortunately). Afterwards we hit up a couple of bike shops to find him a new bike. 

Finally I made it to my appointment for my Neulasta shot (and got a sweet treat from my dear friend - thank you for catching me and blessing me)!

It was a lot of activity today and it was a beautiful day, but I’m definitely wiped. I started to feel my first bout of symptoms. My stomach started to hurt, but not nausea, just stomach cramping. So I took a quick nap on the sofa and had a simple dinner of Vitamin Water and bread!

All in all, I had a wonderful day and so happy to spend it with Matt. Now it’s time to rest, rest, rest!

Two Down! Four to Go!

Today was infusion #2, or as Jenn says, I'm a third of the way done! Woo hoo!  I started with an early day; for some reason I woke up at 5am, yuck! But it gave me the opportunity to write some letters to people I care about so that was an added benefit. (yes, you heard that correctly, I think letter writing is a lost art and should be brought back!)

I got dressed in my port-friendly outfit and had a hearty breakfast. I took my steroid and applied my lidocaine over the port. Then it was the usual business of dragging all of my "luggage" to the office. Bloodwork done. Check. Visit with the oncologist. Check check.  And off to my room for capping. This time I got the sunny window room!

Me and Coco chilling...brrrrr!

Stick 'em up!

Remember to think happy! 

Once I was capped, I got the pre-meds (Benadryl, anti-nausea, Pepcid, anti-diarrhea cocktail).  The Benadryl hit me hard this time around.  I was very tired.  So tired in fact, I fell asleep on one of my guests (thanks for keeping me company Ed!).

It was a much shorter infusion, so I was home by 2pm, had a bowl of delicious pumpkin soup and went right to sleep!  So so tired this time around. I set an alarm so I didn't sleep through dinner time! (The sleeping cap is to protect my fragile hair since I’ve been shedding a lot - crying face emoji!).

Dinner was a delicious bowl of chicken, rice, and spinach soup.  Then we went for a walk.  I didn't notice the heart rate fluctuations that happened last time.  I wonder if it's because I've been working out and trying to get stronger.  Either way, it was a nice experience (except for the heat and humidity, ugh!).

And finally, I ended the night with another workout of weight lifting. Building up my guns to fight this cancer! 

Overall, I couldn't have asked for a better day, I even got a rainbow today! I hope the days to come will be just as good if not better.  Fingers crossed! Thank you for all of your thoughts and prayers, my heart is strong and open to receive your love and care! 

Packing my Blessings

Tomorrow is infusion #2 and I’ve had mixed emotions of course. The sitting there seems like no big deal now. It’s the after - how will I feel? Will it be like last time? Will I feel worse? How long will it take to get better again? Will all of my hair fall out this time? 

I packed my bags for the trip that no one would buy tickets for - my ice pack bag, my DigniCap bag, and my blanket/snacks bag. 

This is no ordinary blanket. I have a beautiful family member who lives over 1400 miles away, she made me this blanket, and also blessed it in church. My heart is overwhelmed with her generosity, love, and care! Tomorrow when I cover myself with this blanket to keep warm, I will feel her prayers of peace and comfort and know how very loved I am! Thank you so much! I love you too! And I look forward to one day being well enough to hug you in person and thank you again! 

Family Time

I’ve been radio silent because I’ve been on vacation with the family. It’s the only vacation the children have had this summer so I wanted to make sure we went somewhere while I felt healthy enough to go. 

We visited Legoland and had an amazing time! We went on every ride and ate ice cream for lunch! The kids said it was the best vacation ever and I couldn’t be happier that we were able to make these awesome memories. Things will get harder for me (and for them too), but for a moment we didn’t talk about cancer or have to deal with it, we just had fun and that made my heart so happy I could cry. 

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!