More than halfway through my 100 days after bone marrow transplant! Happy Father’s Day daddy. I love you.
Last Saturday, June 9th, I was readmitted to the bone marrow unit at the University of Maryland Medical Center. Once you’ve been out of the hospital, you don’t want to go back. I thought the pain in my knee would subside, but it had only gotten worse. I could barely walk on my right leg. I dreaded making “that” call to my doctor. He told me to come in and prepare myself for the possibility of being readmitted. If there was a way to do this outpatient, then we would. My right knee was swollen and there was a buildup of fluid. They needed to do an aspiration, labs, and take cultures. My white blood count and neutrophils were high, which pointed to an infection. My team of doctors decided that I needed to have knee surgery that night. Whelp that escalated quickly. Everything happened so fast, IVs were being put in, I was signing consent, and getting prepped for surgery.
Since I was diagnosed in September of 2016, I’ve been poked countless times. I’ve had 6 bone marrow biopsies so far. I’ve had to do intrathecal chemotherapy (chemo delivered through a lumbar puncture) a few times. I’ve gone through multiple rounds of chemo as well as total body irradiation. I’ve shaved my hair twice. And now knee surgery has been added to what leukemia has done to my body.
I officially started physical therapy yesterday. He gave me 6 exercises to do while I’m at the Hope Lodge in Baltimore. I’m in so much pain, it’s easy to give up right now. How do I stay motivated, when the finish line seems so far? I’ve got to keep pushing through. Recovery after transplant is about a year. I’d love to have dinner and watch a movie, but I’ll have to avoid crowds. Every time I step out of the house, I’ll need to wear a face mask. Will I be able to take Mason to his 1st grade orientation?
Is it selfish of me to just want life to be normal again? Can I press resume and continue where I left off from before I was diagnosed? ACUTE LYMPHOBLASTIC LEUKEMIA’s chapter in my book is done. I’m ready for the next chapter, LIVE, BREATHE, AND BE HAPPY.
Feeling a little sad that I’m unable to be around Mason today. Trying to take it one day at a time. These 100 days are so critical in recovery that I just need to do it right. Mind over body. Trying to stay positive for the most part, can’t help but break down sometimes. This is just a little bump in the road. I’m ready for many more years ahead. Mason asked me what I wanted to be when I grow up….my response “I want to be your mommy forever.” I just want to be healthy. I want to see him grow.
I’m feeling better today than I was yesterday. Still a little fatigued though. The little bit of hair on my head is still falling out. My skin is peeling from the radiation. I take a handful of medications twice a day. Getting stronger everyday!
914. It’s almost been 2 weeks since I’ve been admitted. My numbers seem to be dropping slow. I got platelets and blood today. #vampirestatus I was hoping to be home for mother’s day, but that might not happen. It’s been a week and a day since my last chemo treatment. Let the hair growth begin!!! It’ll probably take me 3 years to grow back to my original length. But that’s ok, hair is hair. I am happy to be alive.
Woke up feeling in a better mood. 🙂 My numbers look good and hopefully I’ll be able to go home soon. My back is still throbbing a bit, but I guess that’s expected. Hope everyone has a great day today. I can’t wait til I can breathe some fresh outdoor air.
A little Snapchat fun to keep my mind occupied. Everyone seems so busy with their lives while I sit here and wait. I’m here to live another day, but I miss my normal life. Today my family’s taking my son to the circus. I feel like I’m missing out on these very important memories with them. Wish I could see the face of my son as he watches the circus for the very first time. I miss him so much and really can’t wait to be reunited in his tiny little arms around me. I fell in the shower yesterday and the old lady pains are starting to show up in my body. My lower back and butt are achy. So now I’m considered a high falls risk patient. They’ll be setting a bed alarm on me.
#stellastrong #kickincancersbutt #leukemiasucks
919. It’s been about a week and a half since I’ve been in this hospital room. I had such vivid dreams last night. Trying to stay positive in spite of being away from my lil man. ❤️ I miss him so much and am so happy that I’m almost done with chemo. I noticed that my hair is starting to grow back a little. My eyebrows and eyelashes too. Woo hoo!! I’m hoping it’s here to stay even though I have ONE more treatment left!! I can see the light at the end of the tunnel!! Trying to figure out what life will be like when this is all over. Will I still be me? Have I changed? What will my perspective on life be like? I know I must live everyday to its fullest because tomorrow it never guaranteed. I’ve been through quite a lot in my life, but I’ve been a trooper. I just want to live a happy life.
Be fearless in the pursuit of what sets your soul on fire.
Thoughts for the day.
Custody and visitation has been established! Woo hoo. I feel like I can finally move forward and start over. Mason has spent 4 full weekends with his dad. I’m trying to be more productive. I’ve been trying to redecorate the place, but I have zero creativity.