Monday, August 15, 2016

Almost Doesn't Count


If there’s ever a time where I would use the phrase “almost doesn’t count”, now would be it. Over the last month I was readmitted to the hospital for two and a half weeks. I was able to enjoy a good three days at home with Emma, but unfortunately I had to go back in for some complications.

A few weeks ago, I was at home taking a shower and noticed I was starting to feel very weak. I thought nothing of it and went to my infusion center appointment to get labs drawn to see whether I would need a transfusion or not. That day, my levels had gone very low and I needed two bags of blood and a bag of platelets. Throughout the seven hour day of transfusions, I had noticed my temperature going up and down and was nervous it was going to reach 100.3, which are grounds to be readmitted. I wound up going home that night around 9pm and took my temperature before bed. Unfortunately, it read 100.5, then 100.8 and I had to go back in. I thought I would be back in the hospital for a few days of antibiotics, then back home, but that was not the case.

When I got admitted to the hospital another big problem was discovered. After having Emma, I had the normal side effects and felt pretty good by the time I was back in for chemo. Unfortunately, my body thought it was time to go back to normal after giving birth and I started bleeding again just when all of my blood counts were reaching their lowest. This happened to be a very bad situation. The chemo did not allow my body to replace the blood cells I needed, and I was loosing way too much blood. I was getting blood and platelet transfusions around the clock, but nothing was able to keep my levels up. By this point, we started trying various methods to stop the bleeding, starting from the least invasive to ultimately having a procedure done. In less than one week I had over 30 blood transfusions to try to replace the loss. At this point, the blood in my body wasn’t even mine anymore. Thank goodness for the generous people who donate blood for once again saving my life!

That hospital stay was so tough. I wasn’t able to see Emma for the first week I was there. I asked everyday to see her, but the answer was always no. I was having such a hard time understanding the reasoning, but it ultimately came down to my and Emma’s safety, to protect us from infection and the bleeding. This was so hard. After the NICU I had three days with Emma, then I was back in the hospital. I desperately wanted to be with her and was not taking no for an answer. I cried everyday, was moody and generally not the most pleasant to be around. Once again, Ryan, my family, the doctors and nurses were all understanding and never held it against me. It still doesn’t make me feel good to know that I was being a brat. After the first week and a few days when I started to become more stable, I was able to meet Emma downstairs in the lobby for about an hour each night. While its weird only seeing your child in a hospital lobby, I was very thankful for the time I got to spend with her.

After the dust settled with those complications, I was able to go back home- finally! Since having Emma in June, we have not been home for more than 24 hours. It was so nice to bring Emma home and show her where we live. Of course she doesn’t understand, but its nice to have all of her stuff nearby and not feel like we’re constantly living out of our suitcases. We have all the amenities we need and are enjoying spending time with her at home.

Last week, my brother flew in from Florida to come donate his stem cells. We’ve been talking about this for months, its crazy that he is finally here, and even leaving soon. It’s been great to spend time with him. For the past week, he has been getting special injections that help to bring the stem cells into the blood stream. He’s such a trooper- these shots are not the most fun. I had to get them while I was in the hospital and I know they cause a lot of bone pain- and he’s getting triple my dose. I feel bad that he has to go through this pain, but ultimately I know he wouldn’t have it any other way. He is so happy that he is able to help me out, and I am so grateful. He went today to get his stem cells collected. They put a port into his neck, drew the blood, filtered out the stem cells, then returned the remaining blood back into his body. The process sounds simple, but it took many hours and I’m sure it was not the most comfortable. I think its safe to say I owe him big time!

Since my brother is donating his cells, that means I am that much closer to transplant.  I have been talking with the transplant team and they have been amazing with getting everything organized, helping me make sense of everything, talking to me about the process, answering my 1000 silly questions and generally trying to put me at ease. I think I am mostly scared just because my body feels beat up. It feels like I have run three long sprints without any breaks, and am going straight into a marathon. I felt pretty good after the first round of chemo, but after the c-section, second round of chemo, and the complications after, I just feel drained.

I feel so bittersweet going into the transplant. I’m starting to see a light at the end of the tunnel, but at this point, I will be leaving my Leukemia team and be transferred to the transplant team. I walked into my first doctor’s appointment pregnant and scared, but I am leaving with having met some of the greatest doctors, PA’s and nurses who helped get me into remission and helped make my dream of having a family a reality. Through these past five months, they have helped me in so many more ways than just helping cure my cancer. They help me feel like a real person with hopes and dreams, rather than just a victim of cancer. They have helped me stay positive on my toughest days, lent an ear when I needed to talk, and listened to me complain when I just couldn’t take anymore; plus, they love the thousands of pictures of Emma I send! They welcomed the difficult task of caring for not only one patient through the first round of chemo, but two- and I am happy to say that I now have my own family because of them. The reality of it is, today was Emma’s due date, if I didn’t get treatment, there’s a good chance we both wouldn’t be here today. Crazy, huh. I say it all the time, cancer sucks- but the people I have met and the support I have received really shows how much good there is in this world.  I gush about the Leukemia team all the time, but I know transplant is going to be just as great!

As always thank you for the love and support, it means the world.


 Emma, 2 Months

2 comments:

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  2. Through thick & thin God will carry you through & so will we with love, hugs & prayers ! You're a trooper keep your chin up . All the very best to you & all your families ! Doreen

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