Four a Reason: Life with Hodgkins Lymphoma

Last week I had a one year post treatment PET scan and follow up. I am happy to report I am still in remission and today marks my one year cancer free anniversary!

I felt a bit calmer this time before my scan. I don’t know if it was because it had only been 4 months vs 6, or if it is because I knew I would see my results in my chart sooner than a CT scan. I did have a lymph node show activity (which I panicked and Googled about), but they felt it was because I was fighting off a cold…my lymph nodes doing what they are supposed to do!

In a years time I have went from not walking to walking a 10k, not driving to basically running a taxi service for my kids, no appetite to eating everything 😬, no energy to feeling pretty decent most days. So much has changed for the better. And even though there has been a lot to process mentally for all of us this past year, we continue to stick together and become stronger.

Thank you for all of your continued support and prayers. It means the world to me and my family. I hope this is the first of many cancer free anniversaries - 1 year and counting! 💜

In February of 2022 my brother, Willis, and I ran our first RunDisney event together for Princess Weekend. I did the 5k and 10k, not knowing at the time, I had a mass in my chest that would be diagnosed a few months later as Hodgkins Lymphoma.

When I was sick, RunDisney announced that they would be bringing back events to Disneyland in 2024. Willis told me we were going. I laughed it off because I was using a walker at the time and slowly losing my ability to walk at all. I would eventually become bedridden at the end. But he kept promising better days were coming and we were going to do Disneyland.

When I was in the hospital last January, I was struggling to see how I would ever get better. He was at DisneyWorld running and sent me a pic and said “you are passing the Pirate Ship…you are almost there.” The reference touched my heart because during our run together just a year before that was a sign I had almost completed my 10k. And now it was a sign that I was almost done with treatment - I was about to beat cancer.

A week ago, the vision of Disneyland came true. I completed the 5k and 10k - not quickly, but I completed it. 9.3 miles. In total I walked 48 miles during my trip to Disneyland for the RunDisney weekend. It feels unreal - a year before I couldn’t walk at all. It took months of physical and occupational therapy to walk at all, let alone any amount of distance.

I am still in shock and awe of the whole trip. It was truly magical and one of the most full circle moments of my life. So incredibly grateful to have my brother by my side for this adventure and my family supporting me from home so I could go do this. It was pure Disney magic! 💜

What a difference a year makes. Last year I went into the hospital on December 26 and would be there for almost two weeks, including New Year’s. I barely remember this timeframe last year. Whole weeks were a blur. I vaguely remember wishing my nurse a Happy New Year when they came to check my vitals in the middle of the night. As a family we were separated. The kids and dog were with Grandma and Grandpa Dekker. Aaron was between the hospital and house all alone. I was barely awake as I was fighting an infection, on oxygen, and bed ridden. It was easily the most challenging and scary time of my treatment.

Today I slept in after returning from Memphis for the bowl trip. A trip with no accommodations for my health. We put away most of our Christmas decor. I walked on the treadmill, even running a bit. A far cry from not being able to walk at all a year ago. Then Aaron, Ella and I headed to dinner, while Ethan is at a friend’s house. We are actually celebrating and ringing in the New Year!

My hope for 2024 is a full year with no cancer! I will hopefully hit my year in remission mark in February. This year has been a long recovery both physically and mentally. I am starting to feel at my new normal now and ready to keep showing up for life. Grateful for 2023 - cheers to 2024! Happy New Year!

2/2: General update: Now that my scan is clear, I can post a general update. I have been meaning to, but the closer it got to the scan, the more I would think not to post because it could all change overnight. Scanxiety really does start to stop you in your tracks and I find it hard to plan too far in the future for fear that I won’t be able to do it. This is a far cry from the previous me who would set things in stone years in advance.

Overall, I am doing well health wise. My neuropathy is almost undetectable. My headaches are a bit more manageable. My hormones are still a bit out of whack, but that could just be being 41 years old too. I find my eyes are dryer so now use special drops, but again, nothing too out of the ordinary. I have gained most of my weight back. Dang it. I blame it on my body just returning to where it was like cruise control. Never mind the ridiculous amounts of Reese’s pumpkins I ate during the Halloween season…and now trees 🌲 are out. 😬

Mentally, it is still a journey. Watching the way it still affects the kids is hard. Sometimes it is little things like when Ethan only calls Aaron when he needs help with something. He admits he just at times forgets I can now help too. Ella struggles the most and it breaks my heart. When I left for TX for a couple days she just broke down. Me leaving triggered all the times I left for the hospital and she didn’t know if/when I would be back. She said she tried to be strong last year when she didn’t want to add more on to me or dad, but every time I left she was so scared. I am glad she opened up and we could talk through it, but oh my heart.

Then fast forward to Wednesday. I texted her to tell her my scan was okay. I received a text back - Thank God. I cried all through recess because I was worried. - I hate that my children have to go through this. They are so strong, but hate that they have had to be. That night I met her at dance and gave her the biggest hug. I could just feel her little body relax each time I told her I was okay. 🥹 My hug with Ethan was special too - we all can relax for a few months.

Personally I still feel like I am on a mini roller coaster. Some days I feel great and others I feel like I can’t get my bearing. I honestly struggle the most with my hair. Shaving it off felt like nothing. Growing it back has been emotional. As much as other people love it, I have a hard time embracing it. I miss my natural waves. I miss my natural strawberry blonde. It came back brown and stick straight. Thankfully I have the best stylist who is on this journey with me and for hair dye. 😉 Fun earrings also have become a staple. I have yet to figure out how to feel feminine and cute in my sweats/yoga pants. I need a short hair equivalent of a messy bun. It all feels so trivial but I am realizing how much my femininity and look had to do with my hair.

I also continue to fight major imposter syndrome. I definitely had it before cancer but now it is really bad. I feel like damaged goods in a way. I feel like I no longer should be at influential networking meetings or included in professional circles. I made a choice to step back in my career path a bit and along with recovery, have just felt unworthy. I find myself just wanting to stay small and hidden, when that was the furthest thing from my mind before cancer.

While I find many ways in which I still struggle, I also have great clarity of what is important. I love getting to drive my kids to/from activities and hear how their lives are going. I love my family time at football games or Survivor nights. I love date nights with my husband finally feeling like an equal partner again. I am beyond blessed on this journey even though there are still hard times. But overall, life is good. 💜

Post 1/2: Earlier this week on Tuesday, I had my next CT scan of my chest and neck. On Wednesday, I visited my oncologist for a follow up. I am relieved to say I am still in remission! In 3 months I will have another PET scan, my one year to remission mark.

I wish I could say that this week felt as easy as I typed it above. But that couldn’t be further from the truth. The countdown to my scan has been coming for weeks. As the date approaches I could just feel the underlying tension no matter how hard I tried to suppress it. I was quick to snap, easily agitated, and scared. By Monday, I was physically uneasy - I couldn’t keep it bottled up.

Tuesday morning I started with bloodwork. I miss my port as now I have to be poked like a normal person. After a quick draw I went upstairs for my scan. The CT doesn’t take long and really is pretty simple, although you still get the joy of contrast dye that makes you feel like you are peeing your pants.

I know for some survivors returning to the cancer center is triggering. For me it is comforting. It’s a place I don’t have to wonder if people can tell I had cancer or question why my hair is short. For a large chunk of the last year, the cancer center felt predictable and a place of relief and guidance. In a time of my life where nothing still feels normal, the normalcy of the office is comforting. People in there just get it.

I returned back to work Tuesday and impatiently waited for my results. But my results didn’t come and by Tuesday afternoon I was a ball of nerves. Why isn’t he calling me? It’s because the news is bad and he needs to tell me in person. God I don’t think I can handle this again. Waiting for results it is all I can do not to spiral. As a family we went to dinner. I think we all had to stay busy. And even with help to sleep, I slept like crap.

Wednesday I had an appointment at lunch time with my oncologist. Thankfully Wednesday morning was our annual conference at work so I was busy in the midst of an event. And our event had therapy dogs. 🐾 For my appointment, I went through the details with my nurse. When she left, it felt like an hour before Dr. Buroker came in. It was probably less than 5 minutes. He came in and gave me a hug and asked if I am doing okay? I said - I don’t know - am I okay? I think as soon as he said yes, I felt like I could breath. I did have a lymph node in my neck that was a little charged but he felt like it was from a cold. He couldn’t feel it and isn’t concerned. My chest scan looks great and I am in the clear. Next scan in 3 months. He told me to tell the big guy (Aaron) not to worry.

We chatted a bit about football - it wouldn’t be an appointment if we didn’t bull s**t about sports for a while. He then asked about the family. I told him we were excited to see him on the news recently because the kids could finally see him and hear his voice. Of course he hates doing that stuff and let me know it. 😉 He told me to go enjoy the holidays and celebrate, it’s been a hell of a year plus.

And it hit me - I get to be home for the holidays. Last year I went into the hospital on Thanksgiving. I barely made it through Christmas and went into the hospital on the 26th. I spent New Years in the hospital. This year “home for the holidays” means something completely different.

When I got to the car I called Aaron. I had already texted him, but just hearing his voice, I lost it. I was so scared. He was so scared. I had been holding it together but in that moment I couldn’t hold it together anymore. I couldn’t stop crying for a good 20 minutes. The fear, the real fear, of having it come back and do it all over again, is horrifying. And I have heard that won’t change no matter how many scans you have. The fear is palpable and at this point in my recovery I know the toll it has taken on me, my kids, family and friends, life, etc. I am so grateful this scan was good. At least for a couple of months I feel like I can live and be present. 💜

It has been a while since I have posted. Life has been busy as we have adjusted back to me working, kids are back to school and activities, and ISU football is back in action. It is a wonderful feeling to be back in the mix of all these things that I missed last fall.

Last week, I had an amazing opportunity to sneak away to Texas for a few days. I took a super early flight out of Des Moines and managed to be at my brother’s house before my nieces even woke up. They had no idea I was coming and it was so fun to surprise them!

My trip to Texas was for fun, but it was ultimately to be there and support their Pink Out volleyball game. Each player gets to play for someone who is fighting, a survivor, or passed from cancer. Last year they both played for me as I was fighting Hodgkins Lymphoma. This year they played for me again, but as a survivor.

It was such an honor and touching moment to be there for the game and ceremony. Before the game each girl came out with a pink rose as they were announcing who they were playing for. It’s a bit of a weird feeling to hear “playing for their aunt, Michelle Dekker, survivor, Hodgkins Lymphoma”. Each of the girls then gave their rose to me and gave me a hug. When they got to the court, they hugged each other. 🥹 The moment meant so much and is something I will always remember. I feel beyond blessed fo have this moment, not to mention it was awesome to watch them play and rock at something they love! 🏐

This quick trip continued to remind me of not only the amazing support I have had, but also how my cancer journey continues to impact my family and friends. It will forever be part of our story.

In a month or so I have my next scan. As the date approaches I can already feel the “scanxiety” and fear of “what if”. Trying to stay in the moment - the here and now. I am so grateful to my friends and family who are keeping me sane through all of this. Special thank you to the Texas Weirich’s - Willis, Kelly, Madelyn and Stella for my visit. I love ya’ll so much! 💜

This moment meant everything to me. Ella got her ears pierced yesterday and I was there to capture this moment. It seems ordinary but for me there was lots of meaning behind it. You see, last fall, a close of friend of Ella’s got her ears pierced with her mom. Out of the blue, Ella was super emotional about it and it seemed really weird that she was upset about it. After some digging, I will never forget the phrase that she blurted out - “Do you think it is easy having a mom with cancer?” Tearful hugs followed. It wasn’t her friend getting her ears pierced that upset her. It was a reminder that that was supposed to be her and I. And like many other things, we couldn’t do it because I was sick.

So yesterday to be able to hold her hand as her tiny ears got pierced, meant so much me to me. To capture the moment she saw her ears for the first time was a proud mom moment. I recently told a fellow survivor that at times I almost feel “normal”. While that may be true, I can promise you that normal moments like this feel more special than you could ever imagine. 💜

Last week I started my new job and so far it is going really well. It is nice to be back in the swing of things and providing for my family. I was hoping that I would remember how to do things and so far it feels like I am falling right back into it! It is a great feeling. I still struggle with names of things thanks to my chemo brain, but am managing okay. My coworkers are great and although I am tired I am making it work!

This week I also went to the Iowa State Fair to watch Ella dance. Last year was the first time Ella danced at the fair and I missed it. I had just had chemo and wasn’t feeling well enough. I remember doing her hair and makeup and then going back to bed. Attending the fair this year brought some anxiety and emotions for sure. It is so weird to not remember whole parts of your life. I know this is the beginning of months of feeling like this. Months worth of moments that a year ago were a blur or I just missed completely.

Yesterday I met with a genetic counselor to do genetic testing for hereditary cancers. I will find out results in about a month. I am at a higher risk now for secondary cancers so any information I can get that will help me be proactive in care is a win in my book. It is a fascinating process and will share more when results are in!

I appreciate all the continued love and support as I have gone back to work. I can’t tell you how nice it is to share positive and “normal” news! 💜

A health update: Overall, I am doing well. This week I had a follow up with my cardiologist and things are looking great. He even said normal! My resting heart rate is back to a normal range and my elongated QTC is no longer an issue. I don’t have to follow up for a year, so that feels like a victory!

I still get fatigued in ways I can’t explain. It is like I hit a wall with no ability to push through. I try to manage it, but some days all I can do is rest. I also have some joint pain on and off. Both of these things will take a while, if always, to subside. My neuropathy in my toes is a little better. Chemo brain, especially with names, is still a struggle. So all in all, I feel very blessed my health is where it is given 8 months ago I was very, very sick in the hospital.

I will say the PTSD of cancer is real. Even something as simple as having a headache for a couple days can throw my anxiety in tailspin. The panic of what if it is more…I don’t want to do this all again…I can’t do this again…I don’t want to miss more…it just floods my emotions. It is a challenge and one that hits hard each time it comes, emotionally and physically. I see so many things about cancer survivors being strong, etc. The reality is when you are sick, you are just trying not to die. Taking it a day or hour or minute at a time. You do what you have to - you have no other choice. Stay alive and hope the medicine works. The PTSD is a reminder of all of what my body remembers, even when I don’t and a reality that will be with me for a while.

On a lighter and bittersweet note, my time at home is almost up. I start my new job on Monday. I am excited and nervous. I am not the same person I was when I left the work world in April 2022. I hope I will remember what I need and give myself lots of grace for what I don’t. I hope our family transitions as best it can. 🤞🏻 My time home with the kids has been nothing short of wonderful! I will alsways cherish this time more than they know. I plan to soak up every minute possible this weekend. Here’s to my next adventure! 💜

444 days ago was my last day of work after stepping down to focus on my mental health and the mental well being of my family. I had hoped to take off the summer and return to work in the fall. Then, exactly one year ago today, I received my official diagnosis of stage 2, classic Hodgkins Lymphoma. To say I have mentally and physically been on a wild rollercoaster over the last year would be an understatement. It is crazy how different life can change in one month, three months, a year.

Slowly but surely, though, life is returning to my new normal. And it is about to get a whole lot more “normal” as I am headed back to work! I am thrilled to say that I have accepted the Operations Director position at NAMI Iowa. I start August 7.

I am excited, nervous, overwhelmed, scared…all the things about going back to work. Can my body handle it? Will I be going to bed at 8pm now? Will I remember Outlook and Excel? (Hopefully it’s like riding a bike.) Will Chemo brain be a major issue? I have to wear normal pants! 😳

While I have mainly been really overwhelmed by only a few weeks left at home to be with the kids and get my never ending to do list done, I am very excited to be going back to do something I love at an awesome organization. The fact that NAMI Iowa focuses on mental health is not lost on me and I am excited to support the team and organization to continue its mission.

It has been a huge fear about finding a job after remission. I am incredibly grateful for this opportunity and their openness to my story. Most of all, I am trying hard to recognize the huge milestone this is in my journey. I am healthy enough to resume work and supporting my family! There are days I wasn’t sure this would even be possible. I am excited for the chance to make it happen. 💜