So today is my one year anniversary from having my Bone Marrow Transplant. I can't believe it!!! ONE YEAR!!! I'm so freaking thankful to be here I just can't explain it in words. I still take each day as it comes, enjoying as much as I can, and feeling better everyday. I really want to say thank you to everyone for all your support and amazing words of encouragement. I believe three things have gotten me through this dance with more ease. A positive attitude, family, and friends (community). I feel so loved that everyone in my community came together to help me at my most needed time. To have acquaintances turn into friends, and friends turn in to family has been one of the blessings from this dance. With every step back, someone help me takes two steps forward, and I am forever grateful to all of you for being a part of that. I have my one year appointment in Seattle at the end of this month. It's for three days. They do all different types of tests to see where I'm at, and then we go from there. I feel good about it. Thinking about the tests is not so fun, but knowing that I will be done with this year and going onto my next will feel fabulous. I'll still have bi-weekly blood checks. It has been nerve racking here and there, not being able to control my thoughts about having the Leukemia come back, but I feel that will slowly go away. I think the more by body heals the more my head is dealing with stuff. I realized that my dance is not over just because treatment is over. There is so much more to cancer/transplant than treatment. It's almost harder dealing with all the aftermath. When can I work, because I need to. When can I do this? When can I do that? Am I going to feel like this all the time? Am I going to look like this all the time? Is my skin gonna look like this all the time? Will my bones ache forever?Questioning weather I'm broken now or damaged goods? There's so many questions.....But ain't nobody got time for that. I will live in today, the present, and enjoy it. Hopefully I will be in contact with my donor here soon. I'll find out of she wants to be contacted at the end of the month. I'll keep you posted. STOKED! Today I'm gonna hang with some pretty special people. I wish I could be with all of you, but know I'm thinking of all of you and the major role you have played in my recovery.
Sep 21, 2014
Hey hey everyone!!! So it's been a few months since I've updated here. So far everything is going good. I'm here!!! Last time I wrote I was dealing with some issues from the transplant. Minor things, but they can add up. Rash all over, bones hurting, fatigue, etc. Things started to get a bit better then they took a minor turn....so I'm back on steroids and dealing with the aftermath of those. They took me off of them for just about a month, but things happen, and they really have helped those things. No more PUVA. Didn't seem to work.
I'm still staying out of the sun 100%. Thank goodness fall is just around the corner. And I have always liked summer. I still do, but I needed a break. :) I'll just say being on steroids is just a trip. They help, they hurt, they make you change, they make you better, they make me ache, make me cry, make me emotional, but most of all....they make me thankful for helping. Love hate relationship for sure.
This morning I woke up at 4:30 with the worst pain in my leg bones and arm bone. Crying pain. Same thing happened in Seattle for about a week or so. Probably GVHD or the steroids. I think it was when I started tapering the steroids but I'm not sure. I'll see my Oncologist Tuesday. I read this can happen. It sucks for sure. I took a pain pill and about an hour later it went away. Still gone. Just like before. It would happen in the early mornings. I cried like a baby. Ya, because it hurt. And because everything really adds up. I'm so very thankful to be here, for everyday, every moment, but I am definitely not the one to not be affected by chronic shenanigans. No sun, animals, no tattoos ever (really not that big of a deal), no kids, blah blah blah. ADD IT UP!!!
I just had a day check up at the SCCA. Everything seems good. Steroids are working and I go back in November for three days to get a good work-up. When I was in Seattle for the day appointment I went to the UW where I had my transplant to bring them a card for all they did for me. As I walked in it all came back to me. The hallway, my room, the view. I cried. They helped save my life. I glad I went...and I'm glad I went alone. It was a bit nerve racking being back at the SCCA. Any testing makes me nervous. IS IT BACK?!?!?! Blargh.
My hair is still blonde. For now. I dig it. I'm walking more and more. Trying to keep these bones strong while on theses steroids. I'm so happy for my free three month membership program at the YMCA. They have helped me physically and mentally so much. It feels so good to be active when I can. It's also nice to just get out and do something. Everything costs something and cancer isn't cheap. Just making it to appointments is challenging. Thank goodness for Kenny and our community. Kennys working non-stop. Wish I could work but I still don't have the stamina. I get fatigued easy, and I'm still on immune suppressant drugs. I try to relax and enjoy my "time off", but it's just not like that. I paint, which is fun. Plus hopefully I can make a little money. I also like knowing people I care about have my art in their home. Special people make me feel special. Being.....just being can be challenging at times. Everything is different and will always be. And that's ok. Just an adjustment. Most of the stuff that comes from this dance with cancer has made me more appreciative. Smile more. Look at people differently. Better. But it also makes me jealous. I don't like it but I roll with it for a bit. Just a bit. I do wish I could do some things. Afford to go places. But things happen for a reason. I cannot even be in the sun right now. Barely out side really. So where am I gonna go anyways? It's just not my time. I just miss my family so very much. I so feel like I got the short end of the stick at times when it comes to being with my family. Going through this has obviously spot lighted the fact that my family is not here. I have my mother and step father, and they have been great. But I want/miss my father. We are meant to be close, I know it. I want it. I want to be close to the rest of the family too. My sister and I should be together too. These are all things I feel at times, but I stay focused on the fact that I can speak to them when I want and I am lucky to have that. To still have them. But dang it if I won't allow myself to be mad about it every now and then. I just love them so....and I'm so ....here.
I'm glad to have friends that I can relate to regarding my journey. Knowing we have traveled some of the same path is so unspeakably comfortable, it makes my heart warm and full of juices. Although it has not calmed my personal daily struggles that much, it adds a calmness to my mind regarding the overall situation, which is priceless. The woman I have connected with, and all my friends and family that have been here for me have been the ones to help save my life. Knowing that so many cared about what I was going through made me feel so special at a time when I felt so separated. Put aside. Damaged goods. Still tears me up because I still feel the same way at times. But everyday gets better.
Last time I wrote my Hickman was taken out. They forgot a piece so I had to have it taken out. No infection, thank goodness. It happens they say. I'm just glad it's dealt with. So far I'm keep up what I'm doing. I'm going to volunteer at the hospital for a bit. Fill my bucket. Take it day to day. Give back what I can while building myself up. I'll keep posting here and updating. Especially when I hear anything.
Thanks again for everything everyone. YOU have made a difference in my life. Peace in your middle. Love Leah
Jun 14, 2014
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Mar 25, 2014
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Jan 30, 2014
So the other day I was in the communal kitchen juicing and this lovely couple I have seen a couple times comes in to cook breakfast. We start to talk and she explains that she too had AML and had a...
Jan 20, 2014
Well, where do I start? I really not that great with words....Thank you so very much for your donations and support thus far. When I opened the page tonight I was speechless. Still am. Things have...