Wednesday, April 6, 2011

Day 6: Our First Valentine’s Day Living with Leukemia

Valentine’s Day is a very special day for Joe and me. We met on New Year’s Day, he lives in California and I lived in Idaho. After a few dances and conversations we both returned to our respective lives. A few days after returning home, the phone calls began. We spent 6 weeks talking on the phone 8-10 hours a day and met again in person on Valentine’s Day. I never would have dreamed that we would be spending this anniversary in the hospital.

Fortunately I had already purchased a Valentine’s Day card and had it with me. I was able to personalize it and sign my name right before he walked into my hospital room. We exchanged cards and as soon as I started to open mine I began to laugh. We had bought each other the exact same card. We had a good laugh and I hoped that I would be out of there sometime that day. I think that Joe was secretly hoping that they would keep me there to keep me safe.

My blood work came in at 98,000. That is below 100,000 so I was praying for my release. I was also looking forward to getting that catheter out of my neck! We spent the day hiking around the nurses’ station and watching NetFlix. Finally around 6:00 pm my doctor arrived. He was under the impression that his physician’s assistant had released me. He re-checked my blood work and gave me my walking papers.

Now if you remember what I previously said about shift change, then you already know how hectic it can be. I was discharged during shift change. A nurse literally runs into my room and practically rips the IV out of my arm. I ask about the catheter in my neck and she groans. She leaves the room in a hurry and in comes my least favorite charge nurse. She is one buff, all business and get right down to it kinda’ gal. I of course am a little freaked out about getting a 20 cm catheter yanked out of my heart through my neck. The way she was yanking the adhesive squares that were holding it in place was far from gentle. She pushes my head left and instructs me to hold still. I ask her if it is going to hurt. She laughs. Eventually she gets all of the tape and other goo off of my neck and then realizes that there are stiches holding it in place. She leaves, comes back and roughly removes the stitches and clips my neck just a bit. I say “Ouch” in quite an irritated tone and she takes a deep breath. She tells me that she is going to removes the catheter now and for me to take a deep breath. I feel the tube being pulled through the hole in my neck. It is not really painful, just sort of gross. It feels like a swooshing movement from your chest.

Once the catheter is out, there is some bleeding. She asks me to put pressure on the gauze on my neck and tapes a gauze pad over the wound. She literally runs out of my room and the discharge nurse shows up with my discharge papers. You can tell that everyone is on a frenzy to get me out of there before the next shift begins. She briefly goes over the discharge notes and asks me to sign. I figure that I can read them when I get settled at the timeshare. It is amazing to me how quickly the staff can change modes. One minute they are overly concerned about my extremely low blood pressure and the next they are throwing me into a wheelchair. It was actually quite comical, but annoying at the same time.

Being wheeled outside for the first time in a week was exhilarating! The fresh air, mountain views and slight breeze were rejuvenating. I felt free, free from the tubes, the chemo, the leukaphresis treatments, the nurses’ and the confinement. What I wasn’t free from was the leukemia. It was coming right along with me and will likely be with me for the rest of my life.

I choose not to think about that at the moment and to think about spending the rest of Valentine’s Day doing what I want to do. We arrive at the timeshare and I am a bit shaky but so happy that I cannot stop smiling. The smell in the parking structure is so overwhelming that I have to hold my breath. The chemo has made my sniffer extra sensitive so all smells are exaggerated. Once inside the apartment, I head to the bathroom for a bath. Much to my delight it is a Jacuzzi tub. I think that I must’ve stayed in it for 30 minutes. I needed help washing my hair as I still could not get my neck wet, but I am telling you that I now felt like a million bucks!

It felt so good to be up and around without any tubes that I had Joe sit on HIS throne for the remainder of the evening so that I could wait on him! Sleeping in a real bed with no interruptions was welcoming, waking up to the reality was not.

4 comments:

  1. I love your writing~what a gift to us that you are so eloquently sharing your experience with us. I am so happy that you have love, a most healing element!!
    Love & prayers your way!

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  2. Oh Mary Ann, thank you so much. It is odd, I do not even re-read what I write. I think I am too afraid! Maybe someday...hopefully I can help others who find themselves in this boat, either with leukemia or loving someone who has it.

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  3. Michele I am unsure how to post without being anonymous, but I just want to say thank you deep in my heart. Its is so good to read ur posts just so I know its ok to have pain and it is ok to be tired. This is the new me. I was dx in July 2010 and now actually "accepting and dealing" So yes to you, you have already allowed me to be me. You are making a difference in lives. Thank you
    Bev

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  4. Wow, Bev...thank you so much.I know when I was first diagnosed, the most frustrating thing for me was lack of information. Both on a personal level and a medical one. I don't know how it is that this blog has come to be; but I certainly hope to help others. Thanks so much for reading! I think that to post "un" anonymous you just have to be a "follower" you can do that in the right hand column. Again, thank you for your kind words, by leaving them, you help me!
    My Best to You,
    Michele

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Bricks for the Brave!!