Treatment

On May  15 I got my pathology report back.

My cancer is in remission because they believe they got it all out. However, one of the three lymph nodes they took out to biopsy had a bit of cancer in it. This means I will need chemotherapy in addition to radiation to make sure the cancer does not come back.

As I said in my last post, we have been processing this news and it’s been causing some anxiety for me. This past week  Cortney and I met with my surgeon and oncologist to discuss what my treatment will look like.  The recommended plan is 16 rounds of chemo followed by radiation. Because my oncologist is extremely thorough, she told me about all the testing I could do to predict if the cancer would come back, but ultimately it is her recommendation (and that of the tumor board they took my case to), that no matter what the testing said, because I was so young, they all thought chemo and radiation were my best bets for it not relapsing.

I trust my doctors.

This means I am looking at getting a port surgically put into my chest on June 8. The first four rounds of chemotherapy will be a dense dose and be the “worst” as far as making me feel like garbage. They will start on June 13 and be every other week through the end of July.

Starting August 8 I will have weekly chemo sessions of a non-dense dose that are supposed to ravage me much less than the first four.

I’ve had lots of questions about losing my hair. working, continuing my PhD program, and what people can do to help. I’m going to try to answer some of those here.

Hairy Stuff

I’m going to lose my hair.

I’ve had a TON of people suggest something called cold capping that basically freezes your scalp during treatments and can save up to 80% of your hair. After consulting with various docs and nurses who have witnessed it, people who have tried it, and trusted cancer websites, we have decided that it won’t be worth the cost or extra trouble for absolutely no guarantee.

Serendipitously, after Cortney and I decided this, two separate people affirmed my decision in powerful ways. One was a very close friend whose mother had gone through the process when he was a teenager, and the other was the wife of one of Cortney’s business partners who just went through it all.

Both mentioned it being a ton of work that I wouldn’t want to deal with plus extra time at the treatment center, but they also–without knowing each other–said to me that my bald head is absolutely nothing to be ashamed of. That this is part of my journey and it is my badge of survival. It is powerful.

That struck a deep chord with me, and basically affirmed our decision.

My hair is something I love. My salon visits have become my steady form of self-care since I began therapy 8 years ago for depression and anxiety. My daughter loves my hair. My sons are afraid of me looking different.

But in the end, it really is just hair. It will grow back.

Teaching and Treatment

I am absolutely going to be back to school for the 2018-19 school year. However because I will need weekly chemo treatments, I will be taking every Wednesday off for the first marking period (at least). This means I will miss the first day of school which happens to fall on Wednesday, August 22. My principal could not have been more supportive. He told me we would try to get the same sub every Wednesday so the students had some consistency. He even came up with the brilliant idea for me to create a video to show my students the first day of school explaining everything and then having them write to me.

I work with the best staff in the world as well. Because my co-teacher and I are the best team in the world, she has been invaluable this year as I was out for surgery. My fellow 8th grade teachers have all been supportive and kind and helpful. The staff sent me an awesome basket after my surgery for Mother’s Day that included snacks for the whole family. I am eternally grateful for the love I am surrounded by at work, and I am so thankful I can stay a part of the team.

PhD Program

After consulting with Cortney, my doctors, a friend who went through cancer treatment while getting her PhD, my grad school director, a trusted professor who is like a mentor to me, and a friend in the program, I have decided to go ahead and still take a class this fall. There is an elective available that is a hybrid class (online and meeting only 4 times) which seems like it was dropped in my lap for just this reason. All of the required courses are on campus (which is an hour commute one-way), so the fact that this one is not only a hybrid, but meets closer to where I live is almost too perfect to pass up.

I was also reminded of how lucky I am to have such a compassionate and understanding grad program. They want me to be successful in my program. And honestly, I can’t not at least try. I don’t want to put it off and look back and think, “I could have done it.”

I have to at least try.

Part of doing my PhD is that I want to have the option to change my career to university-level teaching. But another part is to show my own children that we can do hard things, and it doesn’t matter when we do them in life. We can look at a challenge–even an ENORMOUS one–and tackle it.

Ways to Help

This one is hard for me to answer. For one, I have a hard time accepting help for myself. Secondly, I really don’t know yet. I can go on what people (docs and other survivors) have told me, but my journey will be individual and I honestly don’t know yet what we will need.

Cortney is going to try to be at as many of my chemo treatments as possible. June and July will be rough from what is predicted. We are going to try to get a little more organized with food that people want to bring. For one, my kids are picky and weird. Secondly, I like to prepare meals for my family and will be able to do so sometimes, but not always. When we have a better idea of when the meals would be most needed, we will put something together.

I have more books than I can possibly read, I have Netflix and Amazon Prime, I have someone who cleans for us every other week. Cortney enjoys getting groceries. We have grandparents and daycare and (hopefully) playdates for the kids for when I am feeling unwell and can’t parent so well.

There is just so much “wait and see” about how I feel and what we need. It’s stressful for me because I really want to plan everything out and have things set, but that is not possible with this.

So the most you can do right now is continue praying for us–all of us. It’s affecting all of us in different ways depending on the day. Sometimes Cortney and I feel like we are in a good place with all of it, but the boys are falling apart. Other times the boys almost forget about it, but I am having a meltdown about how this can’t be my life.

As it approaches, we just want to feel strong and ready. We want to feel like we are making the right choices for our kids and each other.

Chemo starts on June 13 and will be done in October.

Four months.

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About Katie

Just a small town girl...wait no. That is a Journey song. Katie Sluiter is a small town girl, but she is far from living in a lonely world. She is a middle school English teacher, writer, mother, and wife. Life has thrown her a fair share of challenges, but her belief is that writing through them makes her stronger.

Comments

  1. I have a friend here just starting her chemo journey. It sounds like your treatment plans are similar. Much love to you. I am so sorry.

  2. Elizabeth Ross says:

    Welp. I wish I’d read this before arranging some meal delivery. It was the only thing I could think to do from so far away. There are ice cream treats involved, so hopefully the kids will like those.

    You are all in our prayers, Katie, and will continue to be!

  3. You got this! <3

  4. Kathryn Olney says:

    Thank you letting others be a part of this. We can all learn and grow and become better people. We can learn to step up and reach out. Many us have had picky and weird eaters so helping with food isn’t impossible. Perhaps you could share about your kids picky and weird eating choices. Meals may end up being harder for you than you think now. Perhaps you could “prepare” us to prepare some meals. Maybe after exams. You have enough with that now.

  5. I happened upon this as a friend of mine commented on your post. I’m 6 weeks post lumpectomy and know the anxiety you have been through. While my lymph nodes were clear, my oncologist was confident other tests would show the need for chemo. By the grace of God, they did not. I will start radiation at the same time you start chemo. But now I have the nagging worry of what if it really did get lose? Adulting is so difficult! I wish you peace as you undergo your treatments.

  6. Your recent posts struct a chord with me. I have followed your blog for a few years and have commented from time to time. But these posts I have not been able to get off my mind. My mom recently passed (March 2018) from breast cancer after an on and off battle since 2011. Her first cancer was supposed to be simple. They did a lumpectomy with chemo and radiation. They gave her meds to take for 5 years to prevent the cancer from coming back. Year 4 it came back and she had 26 lymph nodes removed from her right arm causing chronic lymphedema. Then again “they cured” her. A year later she developed a staph infection in her chemo port and was nearly killed. By then the cancer had come back but they couldn’t tell what was the cancer and what was the infection. Months went by before it was an official diagnosis. By then it spread to her lungs. She did well on chemo for a few months and then it stopped working. She died quickly after the chemo stopped. They were living with me after I moved my parents from NM to Colorado to help them out. I don’t say this stuff to make you worry but there are a few things I learned the last 7 years of helping my mom that I would love to share with anyone. First- it’s ok to ask questions, do research and question your treatment plan. I don’t mean to question everything they do, but don’t be afraid to challenge what they say and if something really isn’t going well, switch to someone who will listen to you. You are your own advocate when it comes to the medical world. You have to follow up, know the rules with insurance coverage and tests, and what meets the NCCN cancer guidelines. My mom’s doctors weren’t fond of me, but boy did we get answers quickly and I advocated for her when she needed it most. Second, any sort of odd symptom of sickness take care of immediately especially when you have a port serviced. Thirds and most importantly- take full advantage of people around you. It’s ok for you to lean on anyone that will help. This will take a village. There will be days where you think you’ll be ok, then you’ll over do it and be destroyed the next day. Pace yourself. Let people set up meal trains for you but give them ground rules. Tell them what you want to eat, how much to cook and what your kids will eat. There are going to be days that you will feel like only eating sometimes specific, so don’t be afraid to tell people what you want. And the biggest thing with having meals is visiting. It’s perfectly acceptable to ask for help but not be able to visit. Put a cooler outside the house and have a drop off time so that if you’re not feeling up to visitors your friends and family can feel like they are contributing but then know that you are not up for visiting. You aren’t being rude. They just want to help and sometimes it can just be all a little awkward when you aren’t feeling you’re best. Let someone clean the house for you, or take the kids for a day. You will need your energy. I used to see my mom be “just fine” and then two days later just totally falling over. Also, have a “go” bag prepared for your doctor’s visits and chemo- water, protein bars, snacks, a notebook and pencil to ask questions. Write down a list of all your medications and print them out and attach them to every form you fill out. It saves time and mental energy. I do not have cancer, but I did spent the last 7 years of my life helping my mom with cancer and die of cancer. One thing I do know is that your mental state, happiness and family life are just as important as the cancer treatment. Cancer fucking sucks. And there will be days will you want to just lay there, but maybe laying there with the kiddos would help them understand how you’re feeling. Also, don’t be afraid to ask for medication to help you sleep, or reduce anxiety. Please feel free to email if you want to chat. I’m know the insurance world well, and I can help guide you on how to be an effective advocate for yourself, or I can be a listener. I’m a complete stranger, but I’m also a mom around you’re age and a wife. I watch 7 years of cancer. I am happy to listen or give advice if I can. I don’t want to say “you’ll be just fine! You’ll get through it!” Because that’s realistically crap. You have no idea how this is going to play out, but I do know all you can do right now is live life with your children and family. One day at a time.