Leukemia. It's not for wimps.

When I was 33, I was diagnosed with cancer for the second time in my life. This is my account of having leukemia and the following years of recovery.


8. Musculoskeletal GVHD

I really thought I was done with GVHD altogether after we got the intestinal GVHD under control. I finished up my immunosuppression meds in late September 2016. Six weeks after that, we expected my immune system would start improving. My plan was to start back to work after the first of 2017, that way my immune system would have plenty of time to recover.

I have heard that if you want to make God laugh, you should tell him your plans. 

Throughout October, I was feeling much better. I was more like myself. I was exercising more. My goal was to build my strength and stamina for my return to work. I didn't want to be a burden on my fellow nurses. A few weeks after exercising, I noticed that my thighs began to ache. I thought this was a good sign, I had been doing more stairs and doing squats. I was sure that I was finally building muscle. Then I noticed the soreness wasn't going away.

When I went in for my checkup in November, I mentioned casually to my nurse practioner that I was having some muscle aches. "No big deal, but I just thought I would let you know. My thighs ache when I stand, it's a little harder to stand up and to go up stairs." I told her, nonchalantly. She said she'd run some more labs and let me know the results. That seemed like overkill for mild body aches, but I agreed to do them anyway.  

The next week, my nurse practioner gives me the lab results. The test for musculoskeletal GVHD is elevated. Extremely elevated. It is GVHD. This news hits me hard. I was not expecting this. She tells me that they will have to put me on steroids to see if they can get it under control. "Oh no, I can't go back on steroids! My face swells up and I can't breathe. It's awful!! Is there another treatment?" I ask, hoping for any alternative to steroids. She starts to explain the other two options for me. "One, is Rituxan. It's a chemo they use to treat lupus, which is similar to musculoskeletal GVHD. It's given IV, once a week for four weeks and then once every three months. Two, is light therapy. We will have to place another IV catheter in your chest. Your blood will be pulled out of one side of the catheter, exposed to a certain type of UV ray, then returned to your body through the other side of the catheter. It's similar to dialysis," she said. I realize the seriousness of the treatment options. Reluctantly, I agree to the steroids. 

My NP leaves the room to get the pharmacist. When she leaves, I call Rob. I am not at all prepared for this news. I came to this appointment by myself because I thought everything was good. When I tell him the news, I completely break down into tears. Looming ahead of me are months of isolation, steroid treatment that's going to make my face swell, and then more chemo. Or light treatment. Either way, it isn't going to be going back to work and life as usual. He tells me it will be ok. "We'll get through this. It's just another bump in the road." He's always so positive. I need to hear this. 

While we're on the phone, the pharmacist comes in. I dry my tears and put Rob on speaker phone. The pharmacist explains steroid therapy. I'm not really paying attention because I've heard it before, I've done it before. And all I can think is that I hate it. I hate it so much. She finishes talking and Rob asks some questions. I'm glad he can ask questions because I cannot. Then I ask about being on isolation. Neither Rob nor the pharmacist has touched on that yet. She says, "You'll have to be more careful. The steroids will suppress your immune response. You'll have to watch your temperature and vital signs carefully. When you go out, don't go into crowded areas. When you go to the grocery store, go during off hours." As she tells me this, tears form in my eyes and I can't hold them back. "What is it?" She asks. I just shake my head. 

"It's ok... It's just that I just came off isolation. I was looking forward to getting back to normal." I say. 

She nods. I can tell she doesn't know what to say and she doesn't realize the impact this will have on my life. She awkwardly hands me a tissue and stands there silently while I pull myself together. When I stop crying, she gives me a schedule for the steroids and tells me that the prescription has already been called in to the pharmacy. When I leave the office, I'm numb. I thought this was over. I thought I was better. 

I get into my car and call my mom to break the news to her. She takes the news as well as I did. She thought I was past all of this as well. We both thought I was out of the woods. 

When I get home, I crash on the couch. I don't want to do anything or talk to anyone. Rob comes home with treats for me. He brings me food from The Varsity, a fast food restaurant that's a staple in Atlanta. He also brings me donuts and balloons. Along with these he brings me a small stuffed lamb and a stuffed lion. These make me smile because I had recently told him the story of Lambert the Sheepish Lion. It was one of my favorite cartoons as a kid. He gives me a hug while I cry again and tells me it's going to be ok. 

The next day, I start the steroids. Along with the steroids, I start checking my blood sugar and put myself on a strict, high protein, low carb diet. The steroids elevate my blood sugar and the less insulin and sticks i can give myself, the better. The diet helps control my blood sugar. Knowing I have to be so careful with my diet makes me sad too. The holidays are coming up. I won't be able to eat whatever I want like I usually do. I've spent the past year having a strict diet because of my immune system, now I have a different diet for my blood sugar. All the restrictions are really getting me down. 

The first two weeks on the steroids are amazing! I had no idea how bad I had been feeling!! On the steroids, I feel even better than I did before I was diagnosed with AML. It's an incredible, euphoric feeling to suddenly have all your pain and exhaustion taken away. Before the steroids, the thought of going upstairs was unbearable. I would stay on one floor of our three story house unless it was absolutely necessary to go to another floor. Getting off the couch was a chore. With the steroids, I could go anywhere I wanted! Also I slept less. I had been sleeping up to nine or ten hours a night and still, every day, I was exhausted. With the steroids, I slept four or five hours max. I loved it! I was up before the sun every morning and up until midnight every night. Every morning, I would get up early and make a high protein breakfast. One morning, because it was trash pickup day and near Christmas, I made muffins and a care package for our trash men. They do an outstanding job and I wanted to show my appreciation while I felt up to doing something extra. 

By the end of week three, my face was starting to swell. Just a little puffiness in my cheeks. I knew what was coming though, so I told my doctors and my care team. They were unconcerned. The steroids were working and that was all that mattered. Being concerned about facial swelling sounds very superficial. It isn't. It isn't just my looks that worry me, it's my breathing. My face swells to the point that my nose starts to disappear. The weight of my cheeks on my nose make it hard to breathe, especially at night when I'm sleeping. I tried to put those thoughts aside though and focus on how good I felt. I knew it was important to enjoy feeling good while I still felt that way. I was also down about ten pounds, which was a big plus! I tried to put the puffiness out of my mind. 

By week five, I was miserable. I wasn't feeling good anymore. I wanted to sleep and I couldn't. My face was so puffy, if I slept on my side at night, I had to hold my cheeks off my nose so I could breathe. I looked awful. I was embarrassed to take pictures, I was embarrassed to go out (not that I could go out much because of the isolation). I told my doctors that something had to give, I couldn't handle this any longer. They agreed to do a fast wean of the steroids. Anyone that has ever been on steroids can tell you, this is a terrible idea. 

When I started to come off the steroids, I felt even worse and I didn't think that was possible. I couldn't get out of bed. Everything hurt. My head pounded so bad, just turning over in bed made me tear up. I felt so bad for myself, I cried. I fell deep into self pity and that is not at all like me. I couldn't imagine being happy any more. I couldn't remember what happy and normal felt like. I thought about dying. I thought I was dying. Rob had started a new job and couldn't be home with me during the day any more, so I called my parents. I didn't want to ask my parents to take time off work to take care of me, but I didn't see any other option. I didn't want to be alone. I couldn't get out of bed to feed myself. It was a struggle to get up to the bathroom. 

My parents came right over and took care of me. They also took care of the house, doing the laundry and dishes and things I couldn't do anymore. Four days into this misery, things got a little better. I could get up out of bed again. My head was still pounding, but I could move at least. The depression was strong, but I was pushing through it. I forced myself to move around, to eat, to take my medicine. Everything I did was a chore, but I made myself do it. By the weekend, my parents were able to go home because Rob was off work to take care of me.

I told a friend through text about my headache and that I had read about peppermint oil being helpful for headaches. She dropped what she was doing and brought all her oils and a diffuser to our house. Peppermint oil really did help! It was the only thing that did. I had tried Tylenol and Tramadol. Even a Lortab. No pills touched that headache. I put peppermint oil on a piece of fabric and wore it in a locket around my neck. When my head started to pound, I would lift the locket to my nose and take a deep breath. Instantly, I felt relief. I could finally move again! I felt human. I didn't feel buried in despair. I could see a light at the end of the tunnel. 

I saw my doctors again for a checkup and they told me the plan was to start me on Rituxan. My insurance company had approved it. I would start in January. Rituxan was quite a different beast than steroids. I had no idea what new challenges that would bring. 


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