November 8, 2014
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.
September 22, 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
June 15, 2014
So today marks my two year cancerversary. I can't believe it's only been two years, it seems to me like I've been going thru treatments and such FOREVER! Though I can still remember the day I was told by my Oncologist that" I was sick....really sick!" I didn't do much today. Took a couple walks, sat by a fire for a bit, and ate lots of chocolate/peanut butter yogurt bars. They're the devel wrapped up in yummy chocolate, and I'll leave it at that. I don't really feel too many emotions today. I just keep thinking that it's only been two years. CRAZY.
So, I'm doing good. Last time I had my blood checked, which is every other week now, it was great. I get it done again this coming up Thursday. I'm still dealing with a few things from the GVHD, but I'm STILL HERE, so I can deal with the itch and extra weight at the moment. I'm doing PUVA (light) treatments for the rash. It seems to help. I can't be in the sun, but I can go in a tanning bed for treatment. Humm. I do take a drug an hour and a half before treatment, but still,seems weird to me. I look tan but have not been outside. But hey...whatever works. I just don't want to get too dark. I recently dyed my hair BLONDE, it's very different, and I don't want to be red with white hair. I can't.
Still on steriods, but hopefully tapering soon. I have a red face usually, what god knows from what, but I heard that will go away after I'm done with the drugs from transplant. Cross fingers...6 months.
GOOD NEWS!!!! I got my Hickman Catheter out. Yeah buddy. I feel like I got my body back. Don't get me wrong, it was a blessing having it, but I'm super stoked it's gone!!!
I've been able to see some friends, which has been AWESOME, and I will say this about all of my friends....I'm so grateful for each and every one of you. You have blessed my life and made it richer, and for that I am forever thankful!!!! My family. Gawd, LOVE THEM. Kenny is doing well. Adjusting to everything as well. He's a dime!! Love that man~
I get so bored. I have energy so I get out and walk or try to do some type of activity. But when I feel tired or worn out for a few days, I listen to my body and take naps. Not having the energy or stamina like before is hard at times. Not working, for me, is harder than I thought. Well, unless I was rich and didn't have to work. I'm sure I could find other things to pass my time. But I enjoy working. I'm excited to go back to doing something when possible. That is something I have been thinking about a bit lately. We will see....the skies the limit. Plus it sure would help with the medical bills and such, but things happen for a reason, and I'm ok with that. I'm here.
I find myself crying here and there, but not all the time. Plus, I don't mind, it makes me feel better. A few weeks ago I was real emotional. I saw one of my soul sistas, Kristina, and right away the tears came flowing. She's an amazing spirit that has also been through the cancer dance, and I was lucky enough to connect with her. I realized having someone to connect with and talk with is a major part of my recovery. I have great friends that I can and do confide in, but connecting on a cancer level is a whole different ballgame. She helps fill the pit in my heart that's filled with questions.
I get frustrated every now and then. Get mad or cry for a bit. I'm glad it never lasts too long. But sometimes I sit and think of everything that has happened. What I still can or cannot do, and it can be a lot to swallow at times. Even with all of these things, I still feel very thankful to be here and to wake up every morning. I'm not sure what tomorrow will bring, I will focus on today.
One Love,
Leah Persinger
March 26, 2014
I have been home now about a month. I have been trying to used to being here. It's been a challenge for sure. Don't get me wrong, I love being in my own bed and feeling the comfort of my things around me. It's just weird to be living a "different" life at the moment....or forever, who knows. I'm not working so that in itself is taking some time to getting used to. I have restrictions on what I can do, which some is stuff I love to do, so finding my way with new things has been challenging. I realized it's hard for me to find the gumption to find new things to do when I am dealing with the everyday things from the aftermath of a transplant... ever moving rash from GVHD that requires me to apply this steriod cream twice a day onto my whole body, bloating from steriods, nails falling off from chemo, bloated-aching feet, hot flashes, red face, medical bills, bald head, dry skin, people starring in public, wanting to eat everything in site, moodiness from drugs (Poor Kenny), chemo brain (Can't remember anything), shocks of numbness in my feet and fingers, and chemo brain (Did I already say that?) are just some . Don't get me wrong. I'm not sitting here feeling sorry for myself crying in my pillow everyday. Though I feel there is nothing wrong with that. I'm pretty lucky right now in the fact that I feel happy/gratitude most the time. I feel more lost than anything. I paint, cook, and take walks mostly. I cannot be around sick people, and considering it's really hard to tell when people are sick when your in public, unless they are obviously coughing and such, I tend to stay away from crowded places right now. My Oncologist told me to get out and start living my life, which is awesome, but I am hesitant/lost at times. I'm not supposed to hug people, be around animals, garden...and that was my life. No eating out, no eating raw foods or dried fruits. No using yeast when baking/cooking, blah blah blah....but whatever...I HERE, YAY. I love walking, and right now since I'm on steriods still my muscles continue to get weak, but my walking counteracts that to a point. So I'm getting a little stronger, and not getting any weaker. That's a good thing. At times it does make me feel like I'm in limbo. It's weird going from being so active to still having it be challenging going up stairs. BUT I'M GOING UP THEM!!
I go to the Oncologist once a week right now. I was going twice a week until this week. My blood counts are coming up and hopefully in a month or so I can get my hickman catheter out. They want to make sure this certain virus that has been coming and going does not come back before taking it out. I'll be so stoked when it comes out. First thing is bath time. It's been so long since I have taken a bath. Just taking a shower takes a while because I have to cover my hickman everytime with a taped cover and then reinforce it with more tape. I enjoy my showers, so I spend lots of time just on that. Then I have to flush both lines of my hickman once a day so that's more time that I will get back once this thing is gone. I appreciate it very much though....it has saved me from getting poked thousands of times, literally. I think it's something that's required when you have Leukemia and getting treatment. It has one hole plugged into my left chest area with two lines coming out of it so I can get several different meds at one time. It has been a blessing thru this for sure.
I'm so lucky to have the people in my life that have been here for me thru this. I have realized that years don't make the friendship, longevity is nothing, it's the quality of the friend that matters. And man do I feel blessed to have the old and new friends that are in my life. Going through this has made me look at things so different, and I know that would have never happended unless I went through this. For that I feel lucky. Family, friends, kindness, love, and caring are what is impportant to me. It's always been important to me...but now I'm way more concious of it, thankgoodness. I love everyone. Imma keep going day to day, and hopefully keep appreciating every moment. One Love!
January 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 transplant. She was back for her one year booster shots. Kind of like when your a baby...we have to come back and get them all after a year. She then explains to me that when she went in for her blood draw they told her that her AML was back. My heart dropped. My first response was sorry, but I quickly took that back, it's not a favorite of mine to hear for some reason and I could tell her neither. We continued to talk about what's going to happen. They were not sure. They were meeting with the team the next day. I have not seen them since. I was left feeling numb. Sad. Scared a bit...for myself and for her and her family. You could see it in their eyes. The same look in mine. I try not to think of what if. But sometimes your just faced with it. Luckly they are very positive and young still and she has the option of doing it all over I believe. DOING IT ALL OVER!!!
So the last week I have been doing tests and trying to recover from overextending my knees. It kind of set me back from physical therapy. I'm kind of using a walker here and there, not doing stairs, but it's getting better. Kenny still has to do a lot for me, bless his sweet face, but moving, icing, helps and not over doing it. They took me off the prednisone so there really is no way I can over do it. I have NO energy at the moment. They actually just did three blood draws this morning to check my cortisol levels to see if my adrenals are working. They did a pulmonary test in a phone booth type of thing, gyno visit, bone marrow biopsy, skin graft, dentist visit, skin doctor to do PUVA treatments which is a psoralen + UVA treatment for GVHD this week thus far. Tomorrow I get a chest xray and a dexa skeleton xray. I had a meeting yesterday about being discharged. What I can and cannot do. Since I'm an Allogenic Stem Cell Transplant (non-related donor) things will take longer for me to recover they say. No work for a year (well I really won't have the energy), no animals, No gardening, no mowing the lawn, no traveling, no big crowds, avoid kids if possible, wear a mask, no eating out (just whole real foods) which I do anyways. Wash everything and wear gloves. No pools, lakes, hot tubs unless my own. Avoid construction, dust, etc...maybe more than a year. No plants in house. Friends just can't show up and visit. BOO!
Change for sure...but I'm here!!! :)
I also had the chance to read my discharge papers from after my transplant and being in the hospital for a month. Not remembering anything it was weird to read what the doctors had to say. They first said I was had slight anorexia because of not eating and throwing up. Which was first weird to me considering I woke up 45lbs heavier. But I understand they had to start bag feeding me and started the prednisone. They said I did not want to respond to anything, I just sat there starring at them. Finally after a month and a few days I came out of it, still not wanting to respond...but I came around. And I'm still coming. I smile and laugh more than not. Thanks to the support of my family, friends, Kenny and even people I don't know. This world and the people in it are amazing... One Love!
January 21, 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 been so different and so life changing it just overwhelms me even more to see the support from everyone. For you to take your time and contribute funds really helps and lessens such unexpected expenses and stress. How amazing are you!!! From the start you all have been so supportive and for that I am forever grateful. As for an update, right now I am the housing I'm recovering at doing an at home infusion of magnesium. It makes me so hot. Good thing is It's winter, I'm always cold, and now I'm not. The infusion lasts for one hour but the heat is all night pretty much. Internal heater. I'm also taking it extra easy because I have been sleeping with my legs elevated (I'm so swollen) and stayed that way too long the other night and my knees locked up. Since then I have been waking up every morning with pins and needles, throbbing pain just in my knees.I hate crying and it was so painful. I ended up in the trauma unit at the clinic just to so my team could check it out. They agreed, so far, that I over extended my knees and I really needed to take it easy. Well, I 'm so wanting to get physically better that when they gave me some pain killers (which I'm not a total fan of) I went back to doing the same thing and it just got worse. So now I have a SWEET walker from the big 'ol Goodwill here that Kenny picked up. So know I'm kinda back to having him do everything. He even had to carry me from the 6th floor, with elevators, to the car until we got to the clinic where they have wheelchairs. Thank goodness he can carry my bloated butt. But I learned my lesson and I have been taking it easy, NO PT, for a few days thus far and icing my knees. I actually have an appointment with my PT tomorrow and we will go from there. I get nervous every night thinking I'm going wake up in deep pain so when I get up in the middle of the night to use the ladies room :), I take a pain pill and it seems to be working. Only one and it lasts the day. Thank goodness because I sure don't want to be taking anyone more drugs than I have to. Other than that and a few other "GVHD" symptoms, I feel good. Graft-versus-host disease (GVHD) is a common complication following an allogeneic tissue transplant. It is commonly associated with stem cell or bone marrow transplant but the term also applies to other forms of tissue graft. Immune cells (white blood cells) in the tissue (the graft) recognize the recipient (the host) as "foreign". The transplanted immune cells then attack the host's body cells. It's day to day process and things change all the time but everyday that I'm here feels great and with your kind words and support....what more can a gal ask for? THANK YOU. -One Love
