Chemo Round 10

People thank me for being so open about the journeys in my life: miscarriage, depression, anxiety, faith struggles, and now cancer treatment. I know sharing is not for everyone, but for me it’s a coping mechanism.

Last week I came here and dumped out some of my depression. I put it out there in this space because it was like a garbage pile in my head. I wasn’t looking for sympathy or anything of the sort. I just needed to honestly throw some of that garbage out into the universe to get it out of my head.

And what happens when I do that is magic.

People pick up the garbage and turn it into something beautiful.

Some are tangible like cards and notes and messages. Others are no less real, but cannot be held in my hands like prayers. Some of you take that trash, that burden, and put it in your own backpack for awhile to lighten my load.

And it comes back to me as light.

The light of positive messages, of prayers and thoughts felt, of a student telling me I am gorgeous, of my daughter telling me I am the prettiest mommy. Of a student sliding this on my desk after he heard me admit that being bald is not the best for my self-esteem.

Chemo round 10 was like all the others except that my friend, G, came to visit and she was someone I needed to come visit me. I didn’t even know it until her beautiful smile was there, but I needed her. She is my sister friend and her presence next to my chemo chair made me so very happy.

And you can see my mom came. I love being able to spend so much time with my mom. Retirement for her, chemo for me means we get to have a couple hours of chat time in the middle of the week.

Love and light come each week.

Even when I feel gross and sad and overwhelmed. Somehow, sharing it–putting it out there–means it will come back to me as hope.

And I am thankful for that this week.

Round 10/16 DONE!

Chemo Round 9

Passed the halfway mark and took Round 9 of chemotherapy this past week.

It went fine. Not much to report. Doc said my blood counts look good. I have a weird rash she was concerned might be shingles, so she gave me a prescription for that. Then I was plugged in and got my poison and went on home. My mom visited with Cortney and I while I sat there again this week which was nice.

I’m also three weeks into the school year at this point. My PhD class started this week. The boys started school this week, and today Charlie had his first soccer game.

I am not doing well.

I was. I was fine. Well, I am fine. Physically fine.

But I am emotional and tired and not sure how to ask for help because I am not sure what to ask for.

The hair on my head that didn’t fall out (there is some up there) is growing, but it looks fuzzy and weird. My eyebrows have almost completely fallen out. I’m never fully comfortable about how I look, despite the kind words that continue to show up (although finding out from a parent at my school that two of my 8th grade girls think I look beautiful was definitely a pick-me-up!)

Did I mention I am tired?

Tired is hard for me. It makes me crabby and inpatient and, well…I guess most people get that way too.

I don’t know how to rest more. If I go to bed early or nap during the weekend, I’m not getting something done. But guess what? I’m usually too tired to get stuff done anyway, so I just lie there in the evenings watching TV. And if I do get a nap, my mind will work overtime at night and I won’t sleep then. It’s a pretty un-fun spiral.

Even reading isn’t fun to me right now.

I think that means I have a bit of the depression going on. I went from a TON of anxiety and being overwhelmed, to feeling like I could handle everything (maybe even well), to feeling tired and like it’s all too much.

And that makes me sad.

People keep asking me how I’m feeling, and I’ve started answering, “fine!” because I don’t know how to put into words what I’m feeling without it being a big therapy session that nobody asked for.

So. I am fine.

But also not.

But I don’t know what you can do about that because I have a great support system, words of encouragement constantly coming in, and random pies showing up (thanks, Gram!). It feels like something is wrong with me that despite all that, I still feel….off. I still want to cry and sleep.

So that is where I am right now.

Round 9/16 Done.

Chemo Round 8

Yesterday was Round 8…HALFWAY!

Because I am surrounded by the BEST people in the world, my friend Nurse Ashley brought me (and Cort and my mom) donuts. Cortney bought me my weekly frappicino and I told everyone who was within earshot that I was HALF done!

It went well again. As I said, my mom was there again this week. Cortney had to leave because Eddie had his yearly well-child appointment, so my mom made sure I had company and a ride home.

I felt very good leaving my students with their weekly substitute. They know her from last year and she was there with them on their first day. I was right, everything went very well. Many students asked, “how did it go yesterday, Mrs. Sluiter?” which warmed my heart that they thought to ask.

They boys had Open House last night at school, so Cortney took them so I could lay low with Alice. Both boys are excited about their teachers and getting back to school next week.

And, just because he couldn’t let summer slide away without meeting a major milestone, Charlie decided yesterday was the day the training wheels would come off and he would join his big brother as a two-wheel rider.

I now have two weeks of school done even before my own kids have started school! But summer is slipping between our fingers! This weekend is it! Then we will be fully on our fall schedule.

Prayer requests this week are for continued energy and “pep” as my PhD class starts. Peace and courage for the kids as they start a new school year with new teachers and new challenges and adventures. And of course strength for Cortney as he navigates caring for me with the balance of his own fall schedule and running the kids around.

Round 8 DONE!

Chemo Round 7, Pearl Jam, and Back to School

One of the first things I asked when I found out I had to go through chemotherapy was, “Will I still be able to go to the Pearl Jam show in August?” The answer was a definite YES, and I had been looking forward to it as a sort of a goal all summer.

They played Wrigley (for those who have been reading this blog for awhile, you know this is the third time we have traveled to Wrigley. The first time we had a rather harrowing experience. The second time was more low key. By now we feel like we have the routine down pretty well).

I suppose I could devote an entire blog post to this concert, but really the main story is that the guy sitting next to me–Will who wore a green shirt and green glasses frames to match–was at his first PJ concert ever and he smoked and drank a ton and had no sense of personal space. Other than that it was GREAT!

We got back on Sunday afternoon and I had to immediately get my brain into back to school mode because Monday and Tuesday my district’s staff was back! Tuesday I had the opportunity to present a Professional Development session with one of my first mentors. It was pretty great.

Wednesday was the first day of students, but also chemo day for me. Since I couldn’t be there, I made my students a welcome video and had them write a letter of introduction to me.

I sad in my chemo chair while they did all that and got Round 7. My mom came to visit during this one and I found that if I have someone to chat with, I won’t fall asleep. Everything went very well, and when I got home I took a fat, two-hour nap. I went to bed on time that night too, trying to prepare for Thursday and Friday–my first days with students.

I’ll be honest: this week kicked my butt.

Yesterday (Friday): I came home around 4:15 and fell asleep on the couch with everything hurting from my piggy toes up to my fuzzy little head hairs.  Part of it is totally normal first week of school exhaustion that all teachers get (blown out voice, anyone?), but some of it I know is because my body is not operating at 100%. It’s not used to be so physically active for such long periods of time. It’s not used to not being able to take a break and rest.

This week was wonderful, but hard.

I’m glad to be back at doing what I love, but I have found I have a lot of anxiety surrounding my limitations–and even knowing what my limitations are until I am faced with them.

I’m struggling with not over-doing it. I’m struggling to know before I over-do it that it will happen, if that makes sense.

This coming week will be the halfway point of my chemo treatments. It will also be the week my class at WMU starts and the week before my kids start school. Charlie has started soccer. Eddie will start up with scouts again soon. Cortney has a lot going on with work and consistory for church, plus bowling starts this week.

I know routine and patterns will help, but prayers while we adjust to all this are greatly appreciated!

7/16 Done

Looking Forward

As my mom and Charlie would say, “Mom’s pep is back.”

Round 3 was hell. Monday I totally hit rock bottom. It was the perfect storm of fatigue, not leaving the house for 4 days, not eating properly, and a big dose of depression. I sobbed in the shower.

Then Cortney sat by me, affirmed my feelings were valid and just, and then told me to get ready because we were going to a minor league ball game with friends.

The laughter and adult conversation and fresh air did it. My smile came back.

Along with my smile, my ability to look forward to things came back with a rush. I realized that I only have a month before students will be walking through my classroom door ready (or not) for their 8th grade year of school.

Between now and then I will have my last dense dose chemo treatment, and two of the Taxol chemo treatments. In fact, because school starts on a Wednesday, I will be having a chemo treatment rather than meeting my students. I will be leaving a video of myself for the sub to play. I hate it, but I’m hoping to teach my students flexibility from Day 1.

This is the first summer I have not done an full inventory on my classroom library. I just haven’t been able to get into my classroom due to my health. I did go through my Book Check Outs and mark what was not returned and added those back to my classroom library wish list on Amazon. I also added some new titles that are either soon-to-be published or popped up on my radar as excellent.

When I don’t have chemo brain, I’ve also been reading a lot to try to make my own teaching better. Some of my main goals this school year are: better student engagement, more student-teacher conferencing, and more student-to-student talk. A classroom library goal is to make book check out smoother/student led, make my library even more inviting, and offer more options (audio books, magazines, etc.). I created a separate teacher wish list on Amazon for those things along with some other school supplies that we tend to go through super quickly.

I’ve saved up and ordered my favorite lesson plan book (it should be here on Monday!), and have already started planning the first few days in a notebook. I getting super excited about a new crew of 8th graders, trying new routines and strategies, and just being back to work.

So many people have asked how they can help me through my journey and I honestly don’t know other than prayers and positive thoughts. So rather than me, you could bless my students if you want to check out my wish lists. I will be out every Wednesday for treatment through October, so they will be affected by all this too. I’m looking at it as a lesson in empathy and flexibility for them this year. It can be a super positive experience for them if I can manage to put that spin on it.

Thank you all for having hope and strength and faith when I hit the pit. Thank you for always supporting my family, and the extension of that, my students. Because to me, they become little families each school year.

Chemo Round 3

I have been sort of waiting to feel better before I write about it this time, but the truth is that it’s getting harder.

After the first round, when I realized that I wouldn’t be barfing my face off or have horrid bone pain, there was a moment of relief. But as it came time to do it again, dread set in anyway.

This third time has been the worst so far.

I have some major chemotherapy depression.  (Don’t worry, I have an appointment this week with my therapist and an appointment with a specialized oncology therapist coming soon too)

As my chemotherapy approaches, I get a horrible sense of dread. I cry. I get tired. I don’t want to put myself in that chair of poison.

This time as I sat there, I wanted to barf or sleep. It made me nauseated to think about this shit being pumped into my veins.

I hate my bald head.

Thursday I barely made it until the boys were picked up before falling asleep. I used to love naps. Now I lose DAYS to naps and don’t feel better after.

Friday didn’t exist because I slept through it.

Saturday was more of the same, but more depression set in because it starts to feel like I will never feel better. Ever.

And I hate my bald head. I hate it.

I know that is shallow and it will grow back and it’s a sign of being a warrior or whatever, but I hate it. I want a ponytail. I want to be able to at least LOOK like nothing is wrong even though it is.

I’ve completely lost interest in fun because I just assume I won’t have any. I’ll be thinking about my stupid head. I’ll be worrying that I am tired or nauseated. I’ll be thinking about getting enough rest to deal with the children the next day.

Just typing that makes me cry.

I’m just so tired all the time. Part of it is chemo, part of it is depression.

I only have one of the dose dense chemo rounds left. The next drug they give me (up to 12 rounds) is not supposed to be this difficult, but it’s hard for me to believe that. It’s hard for me to believe I will want to go back to work because right now it feels like there would be no way. I feel unable to do my life at all.

And I hate it.

My positive attitude is waning.

3/16 done.

Chemo Round 2

Wednesday was my second round of chemotherapy. It took a couple hours extra because my port was blocked. Apparently my body was trying to heal it by putting a scab over it. It took a couple hours and some different meds to dissolve the scab. Gross, but necessary.

The bonus to having to sit in the chemo chair an extra two hours was that I was there when my friend the RN (with a bunch of other important letters after her name plus she’s getting her doctorate next for even more letters because she is a crazy school nerd like me. Boom.) came in to the clinic. I like the RN because she is sassy, knows my family well, and loves Pearl Jam. I love the RN because she is like best friends with my brother and still likes me.

Anyway, when you’re going through something like chemo, it’s one of the biggest blessings in the world to have someone like the RN on your friend list and in your contacts. She “gets” to answer all of my fun questions like, “is this (fill in the blank with something weird) normal?” and “can I take a bath?” and “should I keep my lip wax appointments during chemo?” The answer, by the way, to all of them is “yes”.

The last picture taken of me with hair.

The rest of chemo went pretty much the same as last time: Fluids and anti-nausea meds followed by the Red Devil chemo drug and then the bag of other chemo drugs. My hair had started thinning out the day before, so we talked about shaving it and head wraps and wigs.

Thursday the boys were home with me for the morning and early afternoon, then they were picked up for a sleepover and pool fun with some of their best friends since birth. They lived their very best life Thursday to Friday.

Thursday afternoon I started getting super tired, and I bottomed out on Friday. Just like last time I had trouble being awake for more than 20 minutes. It was good the boys were gone and Alice was at daycare because I barely woke up to even eat or pee.

Saturday was still pretty drowsy, but I started to come around a bit by evening. I had more nausea this time, but I think that is because I didn’t do as well drinking lots of water as I did last time. It’s hard to drink when you’re sleeping. And I only woke up enough to take another pill and fall back to sleep, so I am sure my body had a harder time bouncing back. I haven’t had a ton to eat either, so I’m sure that is not helping. Nothing sounds good.

I also had Cortney shave my head on Saturday.

My hair started falling out in clumps and it was getting unmanageable and sort of traumatic for me. I’ll write more about the process I’m sure, but there was crying and hugging and Cortney will say he did a terrible job, but it was quick and painless. I don’t love my buzzed head, but it is what it is for now. Charlie loves to touch it because it’s soft.

Today I’m still dragging a bit, but I haven’t taken a nap yet (although my yawns are getting long). Tomorrow Charlie will be home with me and we have one appointment in the afternoon we have to make, but other than that we can lay low. Which is good because the heat index is well over 100 and my body is NOT a fan of that (as if anyone’s is).

While this all sucks and I hate feeling so run down and depleted, I will say tears of gratitude sprang up numerous times during this round. From having a friend on the inside, to having friends love our boys so unconditionally, to having a place where Alice feels love and routine, to having so much food we actually skipped getting groceries this weekend–we are very blessed even in this time of trial.

2/16 done.

Peace in the Storm

I know this may come as a shock, but I would rather be the helper, then be helped. I’m not good at asking for assistance with anything.

In my marriage, I have had to learn to ask for things because, surprise! Cortney can’t read my mind. I’m still not always good at asking because many times I don’t like to admit I can’t just do things myself. Since having kids and going through depression and anxiety, I have learned strategies for knowing when I am getting overwhelmed and need to reach out. I still battle with feeling shame and apologizing when I ask for help.

Even in my career I have a tendency to take everything on. I love planning and scheming up awesome things to do, but when it comes to doling out responsibilities for making it happen, I will usually do it all (or most of it) myself. I know this is not just bad for me, but bad for my relationships with my colleagues too because we need to have a trust that we can rely on each other to make the awesome happen. I’m working to be better in this area, and honestly I have some of the best teammates in the world, which has made it easier.

When life turns crazy, and we journey through a storm, I get even worse. When other people are going through hard times, you can count on me to send cards, gift cards, and meals. I want to help. I want to make the storm less stormy in some way.

I am learning to accept–and even ask for–help during our storm.

Because as positive of a spin we are trying to put on it, chemotherapy is definitely a storm. I’ve only had one treatment, but having it wipe me out of commission for at least 48 hours is no joke. I lose energy quicker than usual, but can suddenly find myself dealing with insomnia. I can get sunburned while it’s cloudy and raining (ok, maybe that’s hyperbole), and my immune system is not as hearty as it used to be.

This affects my whole family, not just me, as you can probably guess. I would say other than me, Cortney is probably affected the most. He has to navigate how to pilot our family through the storm on his own for those days when I am pretty much just sleeping. Those waters can be rough, friends.

It means feeding the children, getting them to childcare so he can work, making sure my needs are met, and managing all his other normal obligations to our team. It’s a lot emotionally.

The kids are also affected. Mom looks normal (for now), but can’t stop sleeping. She seems normal, but needs to be careful of public places and germs and being outside too long.

I can’t speak for Cortney or the kids, but I have found peace in this storm in a way I didn’t think I would: the help of others.

Cancer takes a ton of control away. It feels like it should be life stopping, but the thing is, life does not actually stop. It keeps moving even when you want to push pause to be able to work through what cancer and treatment all mean. Life laughs at stopping.

So a storm brews.

And the only way to weather it is to reach out and know there are people there who will love you right through it.

My close friend, The Pastor (not to be confused with the Pastor’s Wife who is not the wife of this particular pastor. Follow?), said to me, “Create a meal sign up. Ask for help. If you take charge it will be empowering for you.” She was right. Naming the things that would help, helped me to feel at peace.

But it didn’t stop there. People saw those requests and went beyond.

We have received meals, yes, but we have also been blessed with

  • a prayer shawl from the knitting ministry
  • books and devotionals
  • coloring books
  • treats for the kids
  • treats for the adults
  • head scarves
  • gift certificates to food the kids like
  • gift certificates to get frozen yogurt
  • bluetooth earbuds for chemo treatments
  • notebooks
  • and other care package items you are all so creative to think of

I have been daily learning the power of reaching out and the power of letting grace and love surround you. They bring peace.

While our life is anything but calm, leaning on others and letting their prayers and good thoughts wash over us has brought soothing waves of peace.

Thank you.

We feel you standing, sitting, and walking with us.

 

 

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Lucky 13

Nothing about our story has gone as expected.

Nothing.

Admittedly, many of those unexpected turns have been unwanted.

We have had our fill of sadness, loss, disappointment, rage, and grief.

We have gotten more than our share of bad news.

For some reason, “lucky 13” can’t be any different.

I know you want me to stop staying “I’m sorry.”

But I can’t help myself because I am so very sorry it is happening this way.

I know it’s not my fault,

but damn.

Our anniversary is always wrapped in a weird cancer ribbon anyway,

white for lung cancer,

celebrating the birth of our marriage in June,

the death of your dad in August.

We sat in the pew where he sat to witness our vows,

to witness his memorial.

And now a pink ribbon is being woven into the fabric of our life

and I hate that it’s my ribbon.

I hate that my trauma is yours.

But I am thankful that you stay.

That you stand.

That you take my hand and walk.

That your words are, “you will never be alone.”

Some of the unexpected turns have been beautiful:

Edward

Charles

Alice

Our friendship that has grown deeper.

Finding a church family

and friends who are happy to be family too.

Throughout all of it,

we have woven our own threads of

trust, friendship, love, humility, generosity.

And finding it every single day for 13 years

is nothing short of a beautiful miracle.

But I think that is what good marriages are: beautiful miracles.

Ours is still so young,

but I promise to keep holding your hand,

seeking your friendship,

laughing with (and at) you,

and appreciating all you give and do for us,

for our team.

Happy Lucky 13, my love.

Chemo Round 1

Yesterday was the first round of chemo out of 16 total, but 4 total of this booty-kicking dense dose. So 25% of the way done with the worst, and 6% done with all of it.

This first round was, dare I say it, pretty easy. So far.

Getting the chemo was anticlimactic. I had blood drawn and my temperature taken, then I chose a seat. They accessed my port, and as much as having it in me drives me nuts, it was amazingly painless to get hooked up using it.

They gave me a bag of anti-nausea medication and a bag of fluids. Cort sat next to me and was fairly bored.

Then I got two syringes of what my friend, Mindy who stopped by, and another patient just getting comfy called “the red devil.” It made my pee pink. And it’s the one that is supposedly the one that make my life awful for the next two months.

Then I got a bag of another chemo med.

All in all I was there for about 3.5 hours.

When I got done, I was hungry, so we had Zoup. Then I was tired. I’m not sure if it was the chemo or the fact that I didn’t sleep well the night before and had to be up by 7am. Either way, I let Cortney know he could go into work and I would be fine, and I promptly fell asleep.

I had some hot flashes. Again, I have no idea if those were side effects of the drugs or if it’s because our house gets weirdly hot during the day because of the south-facing ginormous window we have.

Then I took my first anti nausea pill and felt dizzy and weird, so I took another little snooze.

I also ate dinner even though I wasn’t super hungry. It was good. I have to brush my teeth often and swish a mix of salt and baking soda after to avoid mouth sores, so that is fun. Or not, but it will be worth it.

I have Ativan to take a night. Again, it helped.

Today I am home with Eddie. He let me sleep until after 9am, and he’s doing an excellent job of letting me rest. I’ve noticed that all my anti-nausea meds make me dizzy and foggy, but I don’t have any pain yet, and much to Charlie’s disappointment, my hair has not blown itself from my head in a mass exodus (that will take a least a week).

So I am taking it one day at a time. One step. Just waiting on side effects and trying to maintain them as well as possible.

I’m good, for now.

Thank you for all the love pouring over us. We feel it. I feel it.

1/16 done.

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