Our Leukemia Journey
Something you never prepare for, instead just assume it won’t happen to you.
So, I’ve made numerous posts on social media regarding Greg’s diagnosis, but never really focused on discussing how it has been for me. Naturally it is and should always be about Greg, the amazing inspiration he has become to so many people, and his continual fight, but I will say that it’s hard. It’s hard to see, it’s hard not to worry, it’s hard to know what to do when there is nothing to do, and if you know Greg it’s hard to do things for him.
Let’s go back and recap, July-December, 2020. Greg had routine blood work in July as part of an annual physical/check up. Which I will point out he procrastinated scheduling. Everything seemed ok. His white blood cell count was only slightly elevated. Nothing that would indicate that he probably had a little viral infection that he didn’t even know about. Because of blood pressure, the doctor wanted him to come back in the fall. In typical man fashion, he put it off and I eventually made the appointment for him and scheduled the blood work.
Now I can’t really remember if the first blood work was around Thanksgiving, but it came back with a high white blood cell count so the doctor ordered another test. This was scheduled for December 14 (the Monday of my last week of the semester before the holidays). That Friday evening, Greg showed me a referral he got in the mail that day. It was a referral to a hematologist/oncologist with STAT in large letters. On the referral it had his most recent WBC - 77 (normal is between 4-11). My anxiety and panic kicked in. This wasn’t his first high WBC report, and he wasn’t sick. I know enough about this to know that we need to consider something serious, and I immediately went worse case and thought Leukemia. That’s just what I think when i think high WBC or a massive infection, but he wasn’t sick!
I was in a state all weekend because I couldn’t call to make an appointment for him until Monday. If you know me, you know that was agonizing for me. I tried to focus on the fact that we moved that weekend and Christmas was less than a week away and I still had shopping to do. LOL. We tend to be last minute shoppers. Anyway, Monday morning I called right at 8 o’clock when the office opened. It was weird, to schedule an appointment, you had to leave a message and they would call you back, so that's what I did. That day, Greg was working from home as he did every day, and I went to the mall *gasp* I know… the mall! It was crazy. While I was checking out my phone rang, I didn’t recognize the number so I didn't answer it. Basically, when the phone stopped ringing and I was walking out of the store, I freaked out! It hit me then what that call was. I listened to the voicemail and called back. Naturally, I had to leave a message because the office was closed for the day.
Now comes Tuesday, December 22. Greg has his follow-up doctor's appointment. They asked if we were able to make an appointment, and of course, the answer was no. Greg called me and told me to try again and that they would call as well from the doctor’s office. Long story shortened, I finally got in touch with someone. The specialist that was listed on the referral didn’t have an appointment open until the end of January. Over a month away. Yeah, again, if you know me, you know that wasn’t going to work for me. I asked if there was another doctor in the office that did EXACTLY what the referred doctor did. Naturally, all the doctors in the office did, so I made Greg an appointment for the following Monday, December 28. That was much better than the end of January; however, that still meant I was full of anxiety through the holidays. During the week, he had another round of blood work that was going to go straight to the new doctor.
There was absolutely nothing I could do. I don’t make anything better, there was no one for me to call and demand answers from. I was scared and helpless. At this point, we still hadn’t told anyone anything, because what was there to tell? We couldn’t say anything to the kids because we didn’t want them to be scared when we didn’t have any answers and had questions ourselves. So, we waited.
We enjoyed Christmas in our beautiful new home and on Monday we went to Ironwood Cancer Research Center for his appointment. I completed all his patient paperwork prior so we literally just had to show up. Because of COVID, I had to sit in the car and wait. I couldn’t even be with him when he met with the doctor to be told what was happening. I remember in September how terrified I had been when after a routine mammogram, I had to return for another mammogram and ultrasound to check an area of concern. Greg is much stronger than me emotionally, but all I wanted in that moment was for Greg to be with me and not in the parking lot waiting for me. When I was told that it was just a little calcium deposit that 80% of women get, I cried and had to settle for calling him before I was able to leave the office to hug him. Anyways, that is a whole other story.
So, Greg was pretty funny, he texted me that he was the youngest person in the waiting room by like 20 years. I tried to play games on my phone, but I couldn’t concentrate. I just had a feeling that I knew what the news was going to be. Sure enough, it wasn’t too long before he joined me in the car. Again, true to Greg’s form he was like, “Whelp, I have what they call Chronic Myeloid Leukemia.” What happened after that was a little bit of a blur, but I know that he told me a little about it, that it was a form of leukemia that has no symptoms and is only detected through blood work but thankfully is treated with oral medication. However, he needed another round of bloodwork to confirm the diagnosis and had another appointment on January 11. He was also going to need a bone marrow biopsy.
We drove home, and we talked a lot about it. Because I wasn’t in the doctor’s office with him, I wasn’t able to ask the 50 million questions I had. Again, I felt a little lost and a whole lot of helpless. I didn’t know what to do. As a result, I did the worst thing anyone could do. I Googled it. Please learn from my mistake and NEVER Google a medical condition! I was a mess afterwards. I was convinced that he was going to die in 3-5 years. We are in our early 40s, there was no way I was ready to have to deal with that. In reality, he is not going to die from CML in the next 3-5 years. I will make damn sure that he takes his medication twice a day forever if needed. Honestly, I was pissed that the doctor wouldn’t give him the prescription right then. I didn’t want to wait for him to start the medicine.
Tuesday, I returned to work. As, the admin time was planning on meeting in order to plan for the start of second semester. I got in early and had individual talks with my team. I sobbed each time. Telling people made it real. The second day was way worse than the first. By day two, the shock was beginning to wear off, just a little, but the reality of it was beginning to battle for control from the shock. I worried about Greg, every little thing made me panic. Every bruise on his arm from CrossFit, every sneeze or cough. I know I wasn’t making this any better, but I honestly couldn’t help it. The thought about how would I make it through if something did happen, and this disease did take him. I feared watching him suffer and be sick. I tried with all my might to always push those thoughts away, but they kept creeping in. I just keep going back to wanting to start treatment. Doing nothing seemed like an invitation for the leukemia to get worse.
Telling the kids was hard, but we knew we needed to do it and soon. Not telling them wasn’t fair to them. So we sat them down and explained everything. Their reactions were exactly what I would expect. Our son was quiet, concerned, and worried. He didn’t say anything, but I could see the emotions pass over his face. That was hard, because I wasn’t sure how to comfort him even when we explained that Greg was going to be fine and that he just needed to take medicine everyday. I think it was harder to grasp because Greg WASN’T sick. There were no symptoms, so I’m sure it was a little confusing. Our daughter was on the other end of the spectrum with her response. She looked at Greg and flat out said, “Are you going to die?” I thought I was going to fall apart. Not only because that was my initial thought, but because she is 12 and how hard must that be to hear this and have to process it. I was proud of her though that she was brave enough to ask, even though it felt like I had a dagger shoved into my chest. I honestly think they forget half the time that he has leukemia.
We got his bloodwork done, the huge long panel of tests. Apparently, one was looking for the Philadelphia chromosome. That is what they look for to confirm the diagnosis. I don’t know what is so bad with Philadelphia that it became associated with this disease, but whatever. Then we waited, again. While we waited, Greg was laid off from his job after the company he worked for was bought and all the managers were let go. So, we had that going for us! Greg is absolutely freakingly amazing so within a couple weeks, he had two job offers that were both really good. The downside was that I had to put the family on my insurance in February through the school district, but it is really expensive. However, one thing we have learned over the last few months is that it is REALLY great coverage.
His appointment on January 11 confirmed the diagnosis. Greg has cancer. Let me tell you, even though we knew, saying these words is the most surreal thing. It’s one of those things that you just never think will happen to you or someone you love. Now, it was time for our plan of action because Greg and I made a promise that we would be together Forever and Longer, and we were going to do everything to ensure that happens. We have goals of being that little old couple walking through a park having the young couple pass us and say they want to be like that when they are old.
Frustrating, he still couldn’t start treatment. He needed to have the bone marrow biopsy first. This would allow the doctor, who has been absolutely amazing these last 7 months, to have a baseline of his numbers. In a couple years, he will have another one. This will be how the decision will be made if he has achieved remission and can come off the treatment medication.
On January 27, I took the day off and drove him to the outpatient surgery center. Once again, I had to drop him off and sit in the car. This time it was going to be a little longer, but I got all sorts of automated text messages letting me know that he was checked in, was brought back, was prepped and waiting, entered the OR, that the procedure was almost finished, that he was in recovery, and that I’d be receiving a phone call soon. During that time, I went to Starbucks and mindlessly played games on my phone. Total time was about two hours. Again I couldn’t concentrate. I was worried about him. I was worried that something would go wrong and I wouldn’t be there. I was worried about him being put under and not being there when he woke up. I’m not sure if the text messages made it worse or not.
When I got the phone call to drive up to the door, which by the way was boarded up because someone had thrown something through it, I was nervous to see him and relieved that everything was over. Then when he got in the car, I was pissed. Why you ask? Because when I asked him how he felt - expecting him to say sleepy or groggy from the anesthesia - he said that he felt great like he had a full night's sleep and was full of energy. WHAT?!? Who does that! When I’ve woken up from anesthesia all I’ve wanted to do is punch someone and sleep. Literally, I’m not joking. The nurse had to jump out of the reach of my arm when I swung. (I was only 14 years old, but still.)
Anyways, I got him home with instructions on how to take care of changing the bandages over the next few days and the understanding that he was probably going to be sore. Naturally, this is Greg, and he was never really sore. I’m in awe of this guy. We then waited for the biopsy results. Again, I was stressed that it would come back different or worse, but all it did was come back with a third confirmation of the diagnosis.
I will say that we have an amazing support system. Greg is never short on friends, but I’m much more introverted and my circle outside of the family is much, much smaller and very closely protected. But, I couldn’t have asked for what came. My admin team at school have rallied around me, and continue to provide support. Our soccer family was amazing. Both gave us gifts to help offset the high deductibles and medical costs that were adding up quickly, but they also sent texts and called and gave hugs openly and freely even in the midst of COVID. I had shoulders to cry on that wasn’t adding stress to Greg. He was, true to his nature, more worried about me than anything else. That first month of dealing, coping, and accepting reality was tough and scary. Even now, over six months later, I get texts checking in to see how Greg is doing and if I need anything.
So… the days moved forward, he started his treatment medicine, Tasigna, on February 2. All was good. I asked him like five times a day how he was feeling wondering what the side effects were going to be. Everything was fine for the first three or four days, and then his body was like, “Wait a second? What are you putting in me and why do you keep giving it to me?” He had a semi-rough four days. He didn’t feel well, stomach discomfort and muscle fatigue. Of course, I was so worried and stressed. But after those four days, he’s been pretty good with the medicine. Here we are 7 months later, and he still has muscle fatigue every now and then and his eating habits have had to change to balance some stomach sensitivities, but for the most part not much has changed. He still goes to CrossFit everyday and is now super organized when it comes to his weekly meal prep.
Greg does a lot in the independent professional wrestling world… surprise! This is a world that I have never really fully been a part of, but it is one more example of the support system that has rallied around us. Greg co-runs and wrestling show here in the Phoenix area. They held their February show as planned, and I attended. I almost didn’t just because I just don’t always feel like I fit in. But, Greg asked me to go, and I love watching him shine in his element. I was so forever grateful that I did. The wrestlers, well 1 in particular printed a huge banner with the word “Unstoppable” on it. Throughout the night, the wrestlers snuck up front and signed it. Not only was I able to be there for this, but I was the one who presented the poster to Greg. Here’s a surprise…I cried again!
Once he started his Tasigna, he had routine blood work and doctor's visits in Mid-March, early May, and June. Each time, I was an absolute stress ball. What would the numbers look like? Is it getting worse? Is it getting better? It’s enough to make me nauseous when I thought about it in those days waiting for the results. So, naturally I tried not to think about it. But, how could I not. I love this guy, and I didn’t want anything getting in the way of our future!
The results in March showed that his WBC count was already back down into the normal range! Woohoo!! Same for April. His May bloodwork was a 3 month molecular study. This is what is studied to determine is progress towards remission. This time, not only was his WBC still in normal range, the peripheral blood numbers were stabilizing and the doctor’s conclusion is that he is “on the road to remission.” Best news ever!
He texted me the above picture, well screenshot, of his results. I cried.
He now only has to get blood work every three months. So, we wait until September for his next round. It will be another molecular study. In the meantime, I am a constant nagger about checking that he has taken his medicine and still worry more than normal when something healthwise is off. Like when he had what we assume was an allergic reaction to shrimp. I’m hoping with time this will ease, but I have anxiety about everything, so I’m not holding out hope.
We haven’t let it hold us back. But, we are much more thoughtful in what we are doing. For our mini-summer vacation, we wanted to make sure that we are focusing on making memories. That mission has now really filtered into all our decisions for planning trips and activities. Memories will last forever, possessions won’t. I want our experiences and memories as a family to live with our kids long after we are gone. I’ve never been more motivated than I am now to not procrastinate planning to ensure these memories are made.
So, that brings us to today, August 2021. We’ve made it this far, and we will continue down this path together. I will never give up making sure that we get to forever and longer. We have been through too much together to let something like this take our future away. We were basically babies when we met at only 18. We didn’t know anything about the world, even though we thought we had it all figured out. But, we had no idea. No one does.
Lessons Learned:
Cancer sucks. I have known this. My grandfather who was a father to me passed away from cancer when I was a freshman in high school. I have friends who have battled and beaten breast cancer and colon cancer. I pray that cures can be found for all those that suffer from the way too many types of cancer that plague our world. But never give up, never lose faith.
GET YOUR ROUTINE CHECK-UPS! I want to throw up every time I think about where we would be right now if Greg didn’t go for his annual physical with his regular doctor. CML is ONLY detected through blood work. So by the time he started showing symptoms, it would no longer be CML and may have been way more evolved. I can’t stress enough how important early detection is. I will preach this forever.
I’m stronger than I know. Man, so much has happened in the last two years, that I look back and wonder how I have mentally and emotionally made it through. Part of it was because I had no choice. My family is everything to me. But, with that I have learned a lot about myself, what I need to support my own mental health. I have grown to force myself to take care of me because, otherwise, I can’t be strong enough to take care of those that need me most. Make sure that you make your own mental health a priority. And never apologize for putting yourself first. Not only was I trying to hold it together to support Greg, many of you know that in February, the week after Greg started his treatment medicine, our son broke his finger in 5 places during a soccer game. Then two weeks later had severely sprained his ankle playing in a different soccer game. Let’s just say that my next blog post is going to be about all the different types of doctor’s I have visited or taken members of my family to! Mentally and emotionally this was about to break me, but I didn’t break. I cried, but I made it through.
I will do anything for my family. Again, I have known this. But, in this type of situation the reality of some of those things become real. If I needed to, I’d let the doctors shove a big ass needle into my butt and take as much bone marrow as necessary if Greg needed it. I would research every doctor, hospital, treatment option, etc. if I needed to. There is nothing that would ever be too much when it comes to making sure my family is safe and healthy.
Time together is so important. We continually make time for have anything from tiny little date nights that consist of just running to Culvers for an ice cream quickie to weekend getaways. It’s more important than ever to balance time as a family and time as a couple. Our kids are getting older and thus closer to leaving home, which makes me want to spend more time with them, but it also makes it a little easier to get away. They LOVE ordering Uber eats when we are away! We value the idea of quality time.
I will continue to track our journey through CML. I will try not to wait as long so my posts aren’t quite so long! I can’t say enough about the support of our friends and family. We love you all.
If you think I write a lot… I also read a lot. Check out my other blog The Bookshelf and make sure you check out my Podcast, Speaking LITerally, wherever you listen to podcasts!