Spring Awakening

So it’s been quite a while since my last post. A lot of people have been asking me about it. I have been exhausted lately, but that’s nothing new. As this journey goes on, I feel like it gets harder and harder to write about. It seems like every time I get a bit of good news, it doesn’t last long. But, let’s see what’s happened since December.

We found out that my sister is a perfect match for my stem cell transplant! There was only a 25% chance that she would be a perfect match because… genetics. So we were all really surprised about that.

I started my new treatment of Rituxan and Revlimid. Rituxan is an infusion that I get every 4 weeks. It takes a while to infuse because the rates have to be slowly increased over every 30 minutes. My first treatment took a little over 4 hours. It’s a lot rougher than the brentuximab. The side effects are still the same. Nausea, fatigue, etc. It’s just a little more this time around.

The Revlimid is a daily chemo pill. I take it for 21 days and then I’m off for a week. It’s mostly been used in non-hodgkins patients so the side effects for hodgkins aren’t really known. But, I’m sure they’re similar.

I developed a really bad cough after I started this treatment. It is a side effect of the Revlimid. When I went to see my transplant doctor this past Monday, he sent me to radiology for some chest x-rays. It turns out that I have pneumonia. So now I’m just stuck at home resting.

Right before I started this new treatment, I got word that my grandmother had a very serious stroke. Justin and I flew to New York the next day. They took her off life support that Saturday around 3:30 PM. Justin and I weren’t going to land until Saturday night at 11:15 PM. The doctor told my mother that my grandma wouldn’t make it until then. We finally landed and I heard from my cousin that my grandma was still hanging on. They said she was waiting to see me. My uncle said the day before she had the stroke, she was talking about how she was excited for me to visit in April and how she wanted to meet Justin. I guess she hung on long enough to see us. She finally passed on Sunday afternoon, despite the doctor saying she would only last a few hours after they removed the ventilator. We held her funeral and burial on Tuesday.

 

She has been ready to go for a while. We all knew it was coming. I’m glad she could finally be at peace now. But, I’ll miss her so much. It was nice to be around family. There’s so many new babies and everyone finally got to meet Justin. I think he was a big hit. I’m sure grandma would have loved him too.

Justin and I moved into our new home in February. It’s been great. We’ve had a few people over here and there. We’ve still got some organizing and unpacking to do. But, it definitely feels like home already. Our pups love the backyard and they get to run around a lot more. Our neighborhood is nice and quiet. We’re having an official housewarming in a couple weeks. I only have pictures I took at our inspection back in December.

Other than that, things have pretty much been the same. I’m just trying to take it easy and rest as much as I can. Things are still moving. I’m just getting frustrated with all the treatment and everything. It gets tiring. So that’s all… we’ll see how long it takes for another update. Thanks for checking in!

~SL

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