Chemo Round 13

Today was my 13th chemo treatment! My aunt Sandy stopped by to catch up and visit while I sat in the chair. I love her so much, and I’m glad she could stop by. She is one of my mom’s three sisters, and when we kids were growing up, we were super close to our aunts, uncles, and cousins. Sandy and my Grandma Jo used to take my brothers and I camping at the beach during their week there in August each year. Sandy also used to babysit us when we were little kids because my mom worked part-time. She is sort of the social bug of that side of the family, so it was good to hear how everyone is doing. Plus she is an HILARIOUS story-teller.

I met with my oncologist today. I only have three more treatments! Soon I will meet with the radiologist who will be in charge of the next leg of this treatment tour: Radiation. All I know so far is that it’s every day (5 days a week) for six weeks. Appointments are only about 15-minutes, so I am hoping to set them all up for after school. I have a bunch of questions about this, but I am saving them for the radiologist who will probably be the best person to answer them.

Lots of people have noticed the fuzz growing on my head.

It’s not re-growth, but it is the hair that did not fall out growing. It’s pretty patchy and thin on top and in the front since so much fell out. That won’t grow back until chemo is done. And because my fuzz is getting so long, I’m planning to shave it down one more time as the end of chemo approaches so that it can all grow back at the same time and not be all patchy and weird.

The back is pretty thick though…and very soft. Like baby hair.

It’s very exciting to only have three treatments left. Cortney and I keep talking about what we should do for the last treatment. Party hats will definitely be a part of.

My anxiety about radiation is starting, though. I’m not really nervous about the actual treatment, but I get anxiety about how it will affect our schedule. We are ridiculously busy, and trying to figure out how to fit it in each day makes my stomach turn. Plus I have a conference in Houston in the middle of that 6 weeks and will be gone for a long weekend (A Friday to a Monday), and wondering how that will all work. I have lots of questions, which for me means a brain that is now cycling through worst-case scenarios.

I also worry about celebrating the end of chemo too much.

What if it comes back? What if this is not truly The End? What if I am back in that chair with a worse prognosis?

When people ask me how I am doing all this, it is truly showing up one day at a time and dealing with what is in front of me as best as I can. And I am not doing “it all” as it may seem. I miss staff meetings, department meetings, Leading Educator meetings. I am not getting my grading done as quickly as I would like, and I have a huge amount of reading to do for my grad class. “As best as I can” is truly my best, but it’s not what it would be if I wasn’t doing all this cancer treatment.

And I tell myself that is Ok, even though I know it lets people down. They understand, but I know it’s still a disappointment when I can’t produce or show up at the rate I did before The Big C. It’s a disappointment to myself.

I am really really trying to give myself grace. I’m really trying to believe others when the say “it’s Ok.” I’m really trying not to let my brain fixate on every thought that goes through it about radiation timing or getting cancer again.

Right now I am a survivor, and I’m doing what I have to do to stay surviving.

I show up to each day, and do what I can the best that I can.

Round 13/16 DONE!

Chemo Round 12

This was my face when my stupid port was clogged again this week. Luckily, my amazing nurse, Aimee, got it unclogged much quicker this time around and I was off and running with Round 12. Both Cortney and my mom were there with me again. We sent Cortney to work because he seemed to be a bit bored with our chit chat.

I have to say, though, I appreciate that he has been to every single one of my treatments and appointments. He refuses to let me ever be alone in this. And even though my mom shows up too, he is there–he is my person. He is my rock even when he doesn’t feel very solid himself. I honestly couldn’t be getting through this the way I am without him. Cortney has made rest and recovery after each treatment possible even though often it means increasing his own workload and managing the kids and schedule stuff on his own.

I am very, VERY lucky.

Speaking of lucky…

My school district had their breast cancer awareness football game last night, and they asked if I would come and be recognized as a survivor. I was honored that they wanted to include me.

I had my reservations. I said yes because I was told it could bring the community together and give them hope. I want to do that for people. I want them to see hope and not despair when they see me going through my journey.

But I was nervous too. I don’t want to be The Cancer Teacher. I struggle with having the spotlight on me for something I feel is not my own hard work, but luck. I was lucky to have it caught so early. I am lucky to have the support I do. I am lucky that my body is responding so well. And truth be told, we won’t know until I am done and off the chemo and done with radiation whether or not it “worked.” The cancer could come back. We all know there are no guarantees with cancer. It is a brutally and infamously unfair disease.

We packed up the family anyway, and headed out to the stadium. It was cold and drizzling out. Eddie, Charlie, and Alice were heavy on the whine and light on the “proud of our mom” attitudes. I was struggling with my self-confidence and whether or not I was really deserving of all this.

Hanging out before the game and during the first quarter; however, many students came and said hello. Former students (who are all high schoolers now! OMG, my 8th graders have grown up!) gave hugs and told me they were glad I was there.

And after the first quarter of the game, they invited me out with our superintendent to be recognized.

Did I mention it was quite chilly? I have on three layers! I don’t know how Mr. Hoekstra doesn’t have a stocking hat on because my bald head was COLD.

Anyway, it felt good to hear the announcer talk about my years of service in Wyoming Public Schools (this is my 16th year, but I did my student teaching and two years of long-term subbing, so I’ve been around since 2001) and how many students I’ve impacted.

And then I looked up into the stands (which were sparsely populated due to the weather) and heard, “MRS. SLUITER!!!” and saw some frantic waving from my current students. I waved back and they cheered.

Well.

That was pretty awesome.

I still feel weird about being recognized while I go through my journey, but I am a survivor right now. I am in remission even if I am still getting treatment.

And I only have four more chemo rounds to go before the next leg of this tour gets underway.

Round 12/16 DONE!

Chemo Round 11

This week didn’t go as well as other weeks, but we got through it.

My stupid port tried to “heal” itself again which means a little scab formed on the inside over my port thingy so my nurse couldn’t flush my port. This means they have to try to dissolve the scab, but they have to try a bunch of other stuff before they do the stuff they know will work because procedures and regulations and stuff. So by the time they did all that and then did the thing that always work, it added an extra 90 minutes to my time in the chair.

So that stunk, but luckily my mom was there again, so Cortney could take off for work (he is SUPER busy lately…which is good!), and she could take me home once it was all over.

I almost forgot to take my weekly photo, but I quick grabbed one on the way out the door.

I am dealing with some annoying side effects though. The worst being whatever the heck is happening to my legs.

At first I thought it was bug bites…but I quickly decided that no, it was more of a weird rash. So I showed my doctor and she thought maybe it was the start of shingles (which many people on chemo get because yay low immune system!), so she prescribed some meds.

But then one of the spots on my foot looked like it had impetigo, so I started rubbing this bactum something something cream on it, and figured it couldn’t hurt the other stuff. Then it started to look better and itch less, so we are going with that.

Honestly, I think whatever is going on is that my immune system is so low that this ish just keeps infecting itself over and over with new gross stuff.

What I’m saying is that it sucks and I hate it, but it’s not the worst thing that could happen.

I have started to notice a little tingling/pins and needles feelings in my toes. That is sort of scary. Because if it’s nephropathy, it can’t be reversed.  At least my legs will heal. You know, eventually. So I am supposed to “watch that” and report back if it gets worse.

I am scheduled to have 5 more treatments. I just want to get through them all. I want to do the most I possibly can to prevent cancer from coming back in my body.

People have started to ask about the next step after chemo. That would be radiation, but honestly, I haven’t asked too many questions about that because I am just trying to deal with what I have in front of me each day, and 5 weeks still feels like a long time to keep going through this, even though I’ve already come so far.

I’m honestly exhausted all the time. Even when I tell you I am Ok, I would probably rather be napping. Everything takes way more energy than I am used to. But I am also glad to be able to do all that I can do: work, take my kids to practices, games, and activities, homework and class, cook for my family, help with homework, read to my kids. I know not everyone going through chemotherapy is this lucky.

Round 11/16 Done!

*************

My 8th graders and I worked on 100-word memoirs last week. This is the one I wrote with my students:

“Going Bald: A Cancer Story”

“Are you ready?” he asked. “No,” I said in a small voice, “but do it anyway. It has to be done.” My long hair had started falling out in clumps due to the chemotherapy. It was time. I felt my husband’s gentle hands smooth my hair as I sat hunched over on the edge of the bathtub in my pajamas, a towel wrapped around my shoulders. A click and buzz of the clippers sounded. Tears silently dropped as he tenderly let the clippers glide across my scalp. I clung to him as he finished up. “You look beautiful,” he said.

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.

No More Crib

In March of 2009, Cortney assembled the crib that would hold all three of our babies over nine and a half years. This weekend, he partially disassembled it to convert it into a Big Girl Bed for Alice.

Eddie’s nursery

In the beginning it was so new. So full of possibility. So matching.

Charlie’s nursery

Second child meant that we had learned a few things, got rid of a lot of useless things, and added the chew protector because standing babies chew wood.

Look at that face! So proud!

And now, for the first time in almost a decade, it is no longer a crib.

Alice had been asking for a while now if she could have a Big Girl bed. Both boys were two-and-a-half when they moved to their Big Boy beds due to another baby being on the way needing the crib/nursery.

No more babies are on the way, and as long as she didn’t complain, we were unconcerned that our almost-three-and-a-half-year old was still in a crib. She didn’t climb out, and didn’t make a fuss. Until late this summer.

We bought this particular crib because it can convert to a toddler day bed and eventually a full-sized bed (of course we bought it from Babies R Us and now I can’t find the conversion kit for a Pinehurst crib anywhere. I may have to enlist my dad to help). So the “front” that Cortney took off is technically the foot-board of what may eventually be her bed.

I was about to explode into tears when we called her into the room to see it. The crib that held all of my babies that was now a Big Girl bed because there will be no more babies. But before the lump in my throat could actualize, she saw it, burst into squeals of delight, started hugging both Cortney and me, and proclaiming, “I LOVE IT! THANK YOU!” over and over.

The lump vanished and I burst into laughter.

She was just SO THRILLED.

And unlike her brothers, she has not wandered out of bed at night or at nap at all. That is how much she loves it.

Plus she is a rule follower. I don’t think it occurs to her to get up and protest bedtime.

But also because she loves it.

Notice her Babycita’s crib is right next to hers so she can check on her.

She even plays in her room more. She will just go in there and play babies and sit in her bed. And in the morning, she wanders out and will say, “I get up by myself,” to Cortney.

It’s the sweetest thing in the entire world.

The girl is like her mom and loves sleep, but if it’s possible she loves it even more now.

Tonight, when I put her to bed, she said, “Daddy comes down here by my pillow,” and indicated that I can sit next to her bed and put my head next to hers on her pillow. So I did.

“Now sing Row Row Boat,” she insisted.

So I did.

She is still my littlest, but the parts about her that are baby are fading quickly. This week she will be three-and-a-half years old, and she is adamant that she is a Big Girl.

She still sleeps like the Baby Alice I remember, though: with her pink blankie tucked under her arm and her boppy (pacifier) in her mouth. I know I should push to get rid of that too, but I can’t take all the baby away at once.

Diapers, on the other hand, I would LOVE to see go.

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

Chemo Round 6

This week was round 6 of chemo, round 2 of the new drug. As you can see, my attitude has improved. Also my regular nurse, Aimee, was back after a couple weeks away for various reasons and I was super happy to harass chat with her again.

The entire thing went a little quicker this time since I tolerated it so well last time. I only had half the Bendaryl (It still made me sleepy enough that I napped through most of my infusion), and the chemo could drip a little quicker–one hour. So I was in and out in under 3 hours this time.

And just like last time, I napped in the afternoon at home, and was ready to rock today!

The boys had their last day of swim lessons for this year this morning, and then I took Eddie to school with me to get some things done in my classroom (the little two went to daycare).

It was pretty fun to spend time with him. He’s at an age where he is so helpful and fun to hang out with. Although he talked NON-STOP while he worked, so I had to busy myself with things that weren’t thinking-intensive so I could listen and chat back with him. The teachers who were around all commented, “well, he’s basically you, isn’t he?” Yes, yes he is. And I love it.

I am back to work on Monday, so it was important I get some stuff done today, and he helped with that. I have teacher time to work some more Monday and then meetings all day Tuesday. Wednesday I will be out for chemo, but kids will be walking through that door!

It’s hard to believe summer is pretty much over for me. I feel like I really only got two weeks, but I am grateful to have gone through the really hard, comatose days during the summer and not during the school year.

I’m grateful to my co-workers who have helped me move desks and work around some scheduling things for my students while I’m out to give them some routine. I appreciate how supportive the administration has been to find someone who can be a regular presence for my students and for me.

I’m excited to start the school year, but get some anxiety looking at the calendar since I know I have to work in time to do my PhD class and help bring kids to sports practice and scouts. Plus we want family time and fun time too.

I know some of you like specific things to pray for, so here you go: my anxiety, my body continuing to do well with this drug, and the kids as they transition to back to school in the coming weeks (we find out teachers tomorrow! Woot!)–especially Charlie who has some anxiety with change.

6/16 Done

Chemo Round 5

Holy moly what a difference a new chemo drug makes!

This round was the first of the “second leg” of my cancer treatment tour, if you remember. The first “leg” was an A/C drug (don’t ask me to spell them right now). There were four dense dose treatments (in other words: super potent, crippling doses). The reason for this new drug (and up to 12 rounds of it) is because while the A/C treatment is super powerful, we want to make sure all the cancer cells get blasted.

You can think of cancer treatment as a sort of war on cancer. Each treatment type is a different branch of my cancer-fighting military. Surgery was the first surge. It wiped out what we hope to be all of the enemy. We wanted to be sure, so we sent in the second branch: A/C treatment. While chances are, those drugs got anything remaining, research shows that coupled with my new drug, Taxol, the eradication of cancer cells is even more successful. So Taxol is the newest branch of the cancer-fighting military we are sending in. The last will be radiation.

I got my back to school hair cut the day before treatment (it’s not actually growing, but it was looking patchy. It’s even shorter now)

The difference in side effects is almost inexplicable. A/C treatment made me feel like I was dying about 24 hours after treatment. It felt like I would never feel better again.

Before infusing the Taxol, they loaded me up with antihistamine and Benadryl (because pretty much everyone is allergic to Taxol–it’s an irritant. I got quite loopy from that, naturally. Then they pumped in the drugs. I had zero reactions, so I may be able to go lighter on the Benadryl next time.

The side effects are still hair loss (see that picture above), and sometimes nausea (I didn’t have any), low blood counts (because it’s attacking fast-growing blood cells), and mouth sores (none of those yet either). It can also affect my nails and give me joint and muscle pain. The only irreversible side effect is peripheral neuropathy, which means loss of feeling in my fingers and toes. That one they monitor super closely because they can adjust the med or skip one altogether to reduce that happening if I start to notice tingling. That is really my biggest fear.

Anyway, I got home Wednesday and took a nap while the rest of my crew headed up north to spend a long weekend with my parents at a cottage they rent with us each year. When I woke up, I felt great! So different then A/C treatment! I was refreshed and actually worked on school stuff Wednesday evening!

Thursday I woke up and packed myself up and headed to the cottage!

Grandpa and Grandma play some cards with the boys.

Saturday I even went to the beach! This is the first (and probably only) time I have been able to sit on the beach all summer due to my treatment. Chemo makes my skin SUPER sensitive to the sun. Cortney bought two SPF 50 beach umbrellas, I had my SPF 50 hat, plus I slathered in SPF 50 (twice because I reapplied) for the two hours we were at the beach, and I still walked away with a little coloring.

But it was worth it!

The kids could have stayed here all day! (Also isn’t my mom the cutest?)

She would not go near the water without her daddy.

She has mastered the art of relaxing on the beach…just like her mom!

See? Proof I made it to the beach this year!

Even though we couldn’t hit the beach for the entire time we were there, the cottage happens to be on a small, inland lake and the boys had almost as much fun swimming at the end of the dock.

Charlie and his popsicle “floaty” tricks

Eddie and his clowning!

I would say I spent most of the time in the shade near the cottage with my book or watching everyone play, but it made me feel like a real person doing real summer things to be able to even go. With the A/C treatment this weekend would have been impossible right after a round of chemo. I would have been comatose all weekend.

Yes, I still got tired quickly and sat down a lot, but I was there to watch my goofy kids have all the fun and live their best lives.

I don’t even know. These two were nut jobs the entire weekend.

And of course, to round out the weekend, my dad took us all out for huge ice cream cones for lunch on Saturday. Because is it really vacation if you don’t have ice cream for at least one meal?

I am so so so SO thankful for this new drug. I hate that I have to go through any of it, but since I do, feeling more like myself is the way to go.

I will be getting Taxol infusions weekly on Wednesdays until October 24 (we are hoping to get in 12 rounds total).  Please pray that my body keeps handling the meds well (my doctor told me that after all the A/C treatments, my blood counts were so good, you couldn’t even tell I had been on chemo! Keep doing that, body!)

This is my final week of summer before I go back to school (Eddie and Charlie still have three more weeks until their district goes back), so please pray for my anxiety and for my students as they get ready to have an English teacher who is out ever Wednesday and dealing with, well, cancer treatments.

5/16 done

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