The next steps,successes,and yes, disappointments
If things go according to MY plan, I will be sitting in my church next Sunday praising God that I'm home. Praising him that I made it over 100 days, that I am free of Leuk,and the virus is gone. That's MY plan. Let's see what God has in store for me. The past few mornings I have woken up with the song "How Great Thou Are" stuck in my head. He IS great and his ways are just and right. Patience Kelly. He knows best. Today that was reinforced by what I read in "Jesus Today"
I guide you in the way of wisdom and lead you along straight paths. I know how confused you sometimes feel and long to find the way forward. You have tried so many things; you have been hopeful at times. Yet your hope-filled paths have led to disappointment. I want you to know that I understand how hard your journey has been. I can also assure you that I can bring good out of every bit of it.
This is the way of wisdom: trusting me no matter what happens in your life. Its is through trust that you follow me along the right path. There are many things that seem random or wrong as you go along in your journey. Yet I am able to fit them all in a comprehensive plan for good- my master plan. So don't be fooled by the way things appear at a given point in time. You are looking at a very small piece of a massively big picture. From your limited perspective, your journey may be confusing with puzzling twists and turns. However, from my limitless,big-picture perspective,I am indeed leading you along straight paths.
Wow! This is what I needed to be reminded of. God does have this situation in his control- Romans 8:28- We know that in all things God works for the good of those who love him who have been called according to his purpose.
Today Patrick and I went to White River State Park. We went on a small hike through the meadow and it was beautiful. Even though we didn't want to be in MN, especially for these circumstances, I can honestly say I have enjoyed just hanging out with Patrick. He has been awesome and I have enjoyed having him all to myself. I also enjoyed the month alone with my mom. There have been blessings as well as heartache during this journey. I know what's important and that's spending time with the ones I love and treasuring every moment.
Two days away from being home and I was admitted to the hospital for uncontrolled nausea. They are putting me on the steroids that I have fought getting the past few months. These steroids will make me appear very heavy. Hopefully I won't be on them long - but looks like a few months. I still don't know if I'm going home or not.
My aunt is in the hospital - just had heart surgery. My little cousin is in the hospital after a 4-wheeler accident. Friends have lost parents in the past few weeks, many have told me of relatives being diagnosed with cancer, and much more tragedy has hit families in the Valley with deaths of young adults. It just breaks my heart.
Help me to remain positive, Lord. It is all in your hands.
I confess that I had a really bad attitude earlier. I was feeling very sick and very frustrated that my medical team is being evasive about my returning home. I can't get a solid answer out of them. They have no faith in the medical facilities in Alaska. I feel really great now and think I just needed some fluids.
Now I am more at peace knowing God will take care of this. My ways are not always his ways, but they need to really prove their case. I called the doctor's office in AK and they are more than confident that they can handle my situation.
8/25/15 day 104
I have the blessing from my medical team to be discharged from hospital today and be on that flight home tomorrow! I'm going to start giving myself IV fluids at home when I feel I need them. God is so faithful! It's been a hard road and at times I have been discouraged. But a lot of positive things have come out of this. I don't deserve it, but God has rewarded me and has blessed me fully. Tomorrow I get to hold Ollie! And my dogs? I can't imagine how excited they will be! I've never been away from them this long. Hello family and friends. I am coming home.
I am at the airport in Minneapolis. Patrick dropped me off and he headed toward Seattle to drop the car off to be shipped. He will get to see several friends along the way which is nice. I would have loved to have joined him, but that's just too much for me at this point. Soon we will make a cross country trip together. We have lots of plans for the rest of our lives. We feel hopeful I will be around to share his life with him.
I went to get some IV fluids this morning before we left. I figured it was best to fill the tank. Good thing I did because I was orthostatic- meaning dehydrated. Since I have to wear a mask in the airplane and airport, it is hard to drink much. I just take "Bane" off for short periods of times.
In about 9 hours I will be landing in Anchorage. I am so excited and so thankful. The day has come.
As we came in for a landing into Seattle, my heart hurt as it always does here. I grieve that Logan died in this city. I grieve he didn't make it 100 days post transplant. I grieve because I love him. He deserved to live so much more than me. Yet I still fight to live because so many need me here. I know he understands.
HOME!!! Last night my parents, my niece and her husband, Casey, Meghan, Ollie and Delanie were there to greet me at the airport. Meghan and Delanie brought welcome home signs. I couldn't believe how surreal it was to walk off that plane knowing I was home. We did it! We killed Leuk and I survived. It's funny, but I just want to be home right now and not go anywhere. I need some time alone to regroup. This is very emotional for me and I'm not ready to face a big crowd yet. Soon I will be Miss Socialite again. I'm just so happy to be here and my dogs are thrilled. I have been through so much that now I have to learn a new normal.
"Let today bring a new enthusiasm for the purpose you were created to fulfill- and a sense of knowing how important it is." (Bonnie Richter Jensen calendar)
Wow! What a crazy ride. I decided not to leave my house yesterday and just rest. Rest? Yeah, that didn't happen much. I've already overdone it. I unpacked five suitcases yesterday. I had several family members come by. It was funny that none of them overlapped. When I had visitors at least I took time to sit! This morning I have been awake since 0300. I suspect it's the prednisone I am on that's not letting me sleep much. I had both dogs in bed with me too, but they didn't really bother me. This morning I have already unpacked all the stuff we sent back from Idaho.
Mom is picking me up today to take me to the oncologist in Anchorage. We are going to go to Costco and then have lunch with my friend Pam who lives in Germany. She came to see me in Idaho, but I was very sick during her visit. Now that I feel better we can chat more!
So many people helped tremendously to get my house in good shape before I came home. I found out even my dad was here cleaning! How blessed I am!!
Despite my jokes about being Wonder Woman, I really don't give myself credit for my healing. So many keep saying "I" did it, but I know it was God directing it all via doctors, medicine, and my support system who kept me going. I can't take credit for anything except keeping a positive attitude and believing that God would heal me. I don't think Leuk will come back.
I am so happy to be home! Yesterday Ollie got really upset when I picked up an empty suitcase. I asked her what was wrong and she said, "Grammie can't lift that!" I said, "It's okay honey, it's empty and not heavy." She said, " it's not heavy? Okay" She loves me so much and she understands at 24 months that Grammie is sick and a little fragile. It just motivates me all that much more to keep fighting to survive. And yes, that means slowing down..... I will work on that.
Finally slept well! I figure it's the prednisone making it difficult. But my blood sugars aren't that bad on it. Maybe it won't affect me as much as I feared. I'm just glad I finally got some sleep. I was exhausted and worried I would make myself sick.
Yesterday Mom took me to Anchorage for blood tests and doctor visit. I saw a fill-in doctor because my new doctor was on vacation. I will see her Tuesday when I go back again. I of course was worried what the office would be like. I'm so used to Mayo Clinic's ways now that trying someone new can be fearful. I was pleasantly surprised. I think they will watch me closely. Hopefully I have NO more issues and can just sail on through singing, "Leuk is dead, Leuk is dead."
We got to have lunch with my friend Pam and her family. Pam is visiting from Germany. The last time I saw her was in March when she flew over to see me in the hospital.
I must go see my granny today. I haven't seen her yet and I miss her terribly! I also need to get a walk in as I haven't done that since I've been home.
"I may lack the words to describe what occurs to the faithful in times of personal crisis. Let it be said, simply, that there is often a quiet awareness in the midst of chaos that the Lord is here and he is still in control." "In the Arms of God- Dobson"
I confess I haven't been taking it as easy as I was instructed to do. I feel so good that it's hard to just sit around. I did a lot of laundry yesterday and some light cleaning. I had a great visit with Casey, Kelsey, Meghan, and Ollie. Granny is sick so I can't see her yet.
Things are good and I continue to feel amazed that after ten months I am home to stay. I am on top of the world and so filled with gratitude. I will never take anything for granted again. I have a deep appreciation for life, family, and friends.
Today I will be at church celebrating my recovery with some of my greatest supporters. Joy surrounds me. Thank you, Lord for giving me strength and for always being there with me. You never left me to deal with the chaos by myself.
Today did not work out as planned. Due to a vehicle issue, I did not get to church today. At first I was really upset, but God had other plans for me. Those plans include a little more rest. I will no longer sweat the small stuff.
I have been home for six nights! Wow, it has gone a lot faster than the months in MN! I feel really well. I am still super tired. Like the kind of fatigue that knocks you down like a ton of bricks. I do what I can and then I stop and rest. I need to get out and walk before it gets chillier. I haven't been keeping up with daily walks which is not good. But I am still doing my squats, wall push ups, and exercise band. My legs are getting stronger and I'm thrilled I can actually squat down now and get up by myself. That's huge progress from just 1.5 weeks ago!
I enjoyed a visit with Kelsey and her mom, Dorothy, Meghan and Ollie, and Granny yesterday. Today I got to visit with my parents and Laurie. I'm slowly seeing more people. Laurie brought me dinner for tomorrow, Mom gave me dinner for tonight, and Granny gave me dinner last night. I think they want to see me eat. Kelsey brought me a mozzarella pretzel from the fair. Yum! I'm actually doing pretty well at eating and expect I may have gained a pound or two. I will find out tomorrow when I see Dr. spencer.
Yesterday was the first day back to work. It was great to see everyone. I worked till noon and then drove into the Anchorage office to visit with the rest of the team and my boss. It feels so good to be welcomed back and to hear my boss never thought twice about holding my job. Because I had a lot of time to kill I went back to the store to get some items I forgot. I then showed up 40 minutes early hoping Dr. spencer could squeeze me in. Yeah, bad idea. I waited another 40 minutes after my appointment time before I got to a room. By that time I was very sick. Overly tired, dehydrated, and nauseous. I was curled up best I could in a regular chair because they don't have bench seats in waiting room. Once I got back in the room I could lie on the bench. I was getting sicker and sicker. They gave me fluids and IV anti-nausea meds so I didn't get out of there till about 6pm. I felt better, but still exhausted. I collapsed into bed when I got home. Patrick did the site care on my Hickman and I did my IV anti-viral meds. He woke me up to take my meds and I went back to sleep. I realize now why most people don't go back to work this early. Dr. Spencer's mouth dropped open when I told her it was my first day back to work. Good news is I did gain two pounds! I'm up to 109.
Moral of the story- don't stack things up in one day and take it easy!
Three work days and a two year old birthday party down! Work is going well. I'm blessed with coworkers who understand my limitations and seem willing to make allowances for my lacking in energy. Today I wore a dress which I never do working in probation. I also put on a wig. I felt more normal when I looked in the mirror and less sick. Some days I just need to pretend I haven't been to Hell and back.
I believe I am doing a good job taking care of myself. I've overdone it a few times and have learned from my mistakes. I appreciate gentle reminders from people as it helps. I do struggle when I am "ordered" to stop doing things or treated like I am an invalid. I have always worked hard at being independent. I was raised by very independent parents who don't like to accept help. It's been a huge insult to my pride to have to be taken care of for so long. Now I want to start doing some things by myself. Treating me like I can't do anything is a great insult to my independent self. It makes me feel helpless and vulnerable. I need to feel strong and empowered so I can continue fighting to live. So if you see me, gentle reminders and suggestions, offers to help are so greatly appreciated. But please don't tell me I don't take good care of myself because I am trying hard to find the perfect balance. I may make mistakes, but I will learn from them. Most of all,please know I am thankful I am so cared for.
Four days of work down! Each day has gotten easier. I went on a walk in the neighborhood after with Sharmin. I almost didn't go for a walk because I was so tired. I forced myself to go and I'm glad I did. Exercising is a requirement for post transplant and sometimes I have to suck it up. I did rest when I got back. Now I feel restless and like going somewhere but I know that's not wise. I need to stay home and rest. Tomorrow I have some organizing to do. It's still pretty early and I feel like I could easily go to sleep for the night. But alas, 8:30 Meds are still an hour and a half away.
I did end up napping last night. I woke up in time to take meds and then went to bed. I've been awake since 0330. I spent a couple hours organizing Ollie's room. Now I am lying in bed resting. It's hard to respect my limits!
I am especially thankful today that all hurdles of safety in my house have passed. No mold and clean water. I can be safe at home. I am here to stay.
I had a lovely visit with two friends- Wendy and Debbie. It was really nice visiting with them here. Debbie vacuumed Ollie's room for me so I could set her play kitchen up. I was so happy all day relishing in the fact I'm home and I can provide a fun place for our granddaughter to play.
My parents and I went to dinner at Hula Hands. It was nice being with them. We had a great meal and I have leftovers for lunch.
Slept till 0400 this morning. I did some more organizing and finally put the suitcases away. Of course when my car gets here this week I will have a lot more to unpack and organize! I also walked 30 minutes on the treadmill. I got to church 15 minutes early and lasted 30 minutes after service started. Bane was overheating me. The wig didn't help either. I started to feel exhausted and nauseous and had to leave. I am hooked up to my IV hydration in hopes it gives me the pep I need. I had planned on running errands after church. Unless I feel better, I will be staying home.
I had a long conversation with an old friend last week. He had a liver transplant a year ago. We shared our frustration of not having the energy to do what we are used to doing. We both wonder if we should be pushing ourselves to get stronger or if we should slow down. Neither of us know what is right. We both know we have to listen carefully to our bodies.
I did manage to put some hours in at work this afternoon to make up for not going in on Tuesday- my Anchorage doctor day. I'm tired! Casey invited me to go to dinner with he and Kelsey, but they haven't seen each other much lately so I declined. I ate a cup of noodles and some veggies. Original, I know.
Smack down! Boy do I ever dislike limits. Yesterday I woke up at 0430 and got lots done and went to three stores for supplies by 0900. Then wham! Fatigue set in like a thief sneaking in during the middle of the night. It was nap time. Dorothy came over in the afternoon and we went for a two mile walk. I felt amazing! Meghan, Kirk, and Ollie came over and visited and I was still going full strength. Patrick got home from hunting and I kept exclaiming how well I felt. Two hours later, I couldn't hardly move because I was so tired. Sleep eluded me though. I finally fell asleep close to midnight, only to wake up at 0245 and unable to go back to sleep.
Today Mom and I went to my doctor appointment in Anchorage. I mentioned getting sick at church and Dr. Spencer said, "Your church has a balcony, right?". I told her no and she informed me church is off limits for a couple more months. Too many people and too many illnesses going around. She reminded me to stay away from children. All but Ollie and the new baby anyway! As long as they are not sick I won't be deprived of their company. I also can't have my thank you party at this time. Limits suck.
This morning I managed to sleep till 0345 and I probably got a good five hours of sleep. I made a huge lasagna for dinner since I was up. Gary flies in from Seattle for a week. I haven't seen him since the day of my transplant so I'm really looking forward to our visit. I should already be at work but Patrick accidentally took the keys to Granny's car to Anchorage. He has to come back here and give them to me. How can I be irritated with my Superman? He does so much for me.
Man I got some disappointing news. Dr.Spencer said no wood stoves. That's our primary heat source for the cabin. The cabin is my happy place. The only thing I can think of is to go down the beginning of October when it's not too cold. Looks like I can't go over the winter which disappoints me greatly. Also, it was suggested I don't do office visits by myself yet, I know my partner is right, but it still stings like a bee to have it pointed out I'm not ready to take it all on. I want to do my share and not have people feel too many allowances are being made for me.
I decided to get another personal phone instead of just having my work cell. I signed a two year contract with confidence I will be alive the next two years. I don't feel any doubt about that.
The virus is showing back up so I can't go off my IV anti-viral yet.
I got a nice walk in with my neighbor today. I sure am tired, but I can't nap.
It sure is good to be puttering around in my house and doing normal things like work. Even though I am super tired, I am thrilled to be somewhat normal again.
The last two nights we had family over for dinner. It was just so awesome to be with everyone. It is amazing to know I am home for good. I love my family and friends.
Mindy and I had Hungarian Mushroom soup today from Vagabond Blues. I do love their soup and missed it a lot. Eating is getting easier. Although lots still doesn't taste good, I am eating some pretty darn good portions!
Gary and I took a nice two mile walk this afternoon. Tomorrow is the big walk for melanoma. I probably shouldn' be going, but Dr. Hogan said I could as long as the mask is on. I just really shouldn't be hugging people. It's a four mile walk and I am still debating whether I should attempt to do the whole thing.
Tonight my friends John and Dawn came over to visit. I just love seeing my friends. More are welcome to come over!
What a busy day! I woke up before 0300 and was unable to go back to sleep. Darn Prednisone! Gary and I went over to visit my brother and family and then met Dorothy for lunch. After that we ran over to Granny's to take her car back. Then home so I could babysit Ollie. Meghan put her foot down and told me I shouldn't be out doing the walk in the cold and rain. She's right of course. Babysitting Ollie was a lot of fun. She just cracks me up. I was giving her a bath and rejoicing in the fact that not quite four months post-transplant, I am home and babysitting. The joy continues to fill me up even through the extreme exhaustion.
Another 0300 wake-up. Ugh. I had really bad heart burn this time. Stupid medicine! I finally went back to sleep around 0530 and slept till 7 so that helped. I worked today and was just pleased as punch to be back in the game. Gosh it feels so good! Now I need to get motivated to go on a walk.
Today I had my first espresso since transplant. I went to Colony Cup in Palmer. The sweet barista refused to let me pay for it. She said she was buying it. I'm so glad she didn't think I was a masked robber. People are so good!
Happy four month post-transplant to me! Four months ago I got umbilical cord stem cells from an unrelated donor from France. In four months I have made great progress and really feel well. I walk between 1.5-3.5 miles per day, do 80 squats, 45 wall push-ups, and some other miscellaneous exercises each day. I am working four hours per day and trying to organize my house a little bit each day. I make dinner most nights and pack Patrick a lunch. All the things I used to do. Does it ever feel good! I say this not to brag, but to share how good God is and how he has helped me overcome all the bad.
I feel very positive, optimistic, and hopeful that I will survive. I believe Leuk is dead forever thanks to our faith and trust and God's mercy. There's not a moment that goes by that I'm not thanking God for every single living thing.
Had my doctor check-up today. Most things look pretty good. My cyclosporine level is still low so I have to increase that medicine. I will stay on the anti-viral IV meds until I have two more negative virus results. I won't be back to the doctor until the 25th when I go to Mayo. It will be good to see Dr. Hogan and see what he has to say. I would like to get rid of my Hickman, but that won't be happening as long as the virus is showing up. The only nice thing about a Central Line is not having to get poked in the arm for a blood draw.
Mom and I got to babysit Olivinene for a bit this afternoon. She was hilarious as always. I sure enjoy her. Before that, I stopped by and had lunch with Granny.
Welli am not sure what exactly happened, but I got really sick last night with nausea and vomiting. Patrick is out of town and I was home alone. I called my Anchorage doctor about midnight and she said if it kept up I would need to go to ER for fluids. No surprise there. About 0430 I made the decision to go. I got two liters of fluid and some IV anti-nausea meds which helped. I was impressed with MSRC for their great care and willingness to listen to me and give me what I know would make me better. I came home and took a long nap. I feel weak and tired, but overall okay. I wish I knew if it came from the moose bratwurst or not. I cooked them for a long time, but it's possible I reacted to something in it. I over ate last night and then did two miles on the treadmill. Maybe that was it. All I know is bratwurst doesn't sound good now..
Woke up feeling really well today and had a great day at work. Today was Gary's last day here so I made some blueberry pancakes, eggs, hash browns, and bacon for he and Patrick before I left for work. When I got home I decided to take Ringo on a three mile walk. He got spooked and darted in front of me and I crashed pretty hard on the pavement. I tore a hole in my pants and my knee was cut pretty good. It swelled up really big. I also cut my elbow in two places. It wouldn't be such a big deal, but GVHD can attack my skin if I have open wounds. I talked with Station 94 and they directed me on how to care for it and what to look for. Last time I take him by myself.
I am tired and bored. Patrick is hunting again and I am alone with no one to talk to. I could be reorganizing the pantry or finishing putting MN stuff away. Yet here I sit.
I can't say I have been bored today. I woke up around 11 last night and could tell I wasn't going to be able to go back to sleep. I got up, did a few loads of laundry, changed the sheets on downstairs bed, re-arranged Patrick's shirts, and read. I think I went back to sleep around 0230. I got up at 0530 and got ready for the day. I worked four hours, went to grocery store, took my cousin Holly out to Vagabond Blues for her birthday, walked 2.5 miles, and slept for an hour and a half. Now I'm struggling to wake up! I had a "healthy" dinner of Campbell's soup and nachos.
Bad things happen to people who have already had too much grief. Today I hurt for a co-worker whose grandson just died. He was just a few years old. Sarah lost her teenage son a few years ago. Two boys. It hurts and there is no explanation of why this family has suffered such great loss. All I can say is God does care and he hurts with the family. Why do some families suffer more than others? I don't know, yet my faith refuses to be shaken. I trust in my almighty God.
Was another restless night for me,but more organizing got done. At least I am being productive. I got about a two hour nap in before my afternoon walk. I am thankful the weather is so beautiful.
I worked from 0445-0845 today. Why not? I'm up anyway! Mindy is sick so I wanted to minimize exposure from her. All I am is a paper pusher at the moment so it works out okay. I came home and slept for a couple of hours. I just went on a walk. I feel so unmotivated, tired, and lazy. I feel like I should be doing more organizing, but just don't have the strength. Or motivation? Maybe I should push myself harder. I am doing 100 squats and 50 wall push-ups every morning. Guess I shouldn't beat myself up. I'm averaging 3 plus miles a day. It's just that it's in my old DNA and evidently in my new French baby boy DNA to go the extra distance.
With that said, I am going to make dinner for Patrick and bake a cake for my co-workers to thank them for all their support.
Another great day! Worked early again, visited with Granny, took a nap, visited with Care, and walked with Susan, I also made a great dinner for Patrick. Life is so good. I am so happy and thankful.
I am at the airport waiting to board for MN. It's been a month since I have been to Mayo. I can't wait to be there because I know they are going to be impressed with how well I am doing. Unfortunately my TSA pre-Check didn't go through so that was a hassle, but I got through it. I have been up since 0200 and am pretty tired.
Yesterday was our niece Melissa's 17th birthday and we went out to dinner to celebrate. I was so happy that be there. Jua short time ago we weren't sure I would even be around. Thank you, Jesus.
I also had a nice walk with Karen yesterday. It's so beautiful in Alaska.
Traveling to MN was pretty hard on me. I will really need to consider a direct flight next time. I got up at 0200, drove myself to airport, and never slept on plane. I was so exhausted I started feeling nauseous. Thankfully it didn't get worse. When I landed in Minneapolis I had to take a shuttle to Rochester which was another 1.5 hours. Then it was time for my medicines and IV. I hooked IV up and went to dinner. I first went into a restaurant in hotel. I was embarrassed, but I left before ordering. Nothing sounded good. And everything was terribly expensive. I decided to eat at Victorias which is a good Italian restaurant and much cheaper. I will get 2-3 meals out of that dish! But tonight I will be eating at my favorite restaurant here- Vietnamese. Pork Pad Tai.
Yesterday within 30 minutes, I had two men call me sir. I was crushed and about burst into tears. I feel so ugly. I was lonely and sad when I went to bed. I know I am here just two nights but I am all alone this time.
My appointments went well today. I was very disappointed to find out Dr. Hogan was unable to be there today to see me. I love Kim, my favorite NP, but I didn't get to see my primary Doctor last three weeks I was there. Because he has final say in everything, I still have to wait to find out if I can stop my IV anti-viral meds and go to pills. Blood tests all look great and seems I am doing as well as I think I am. They do not feel I am ready for full time work yet. They say if I get my overly tired it can activate GVHD and other issues. Hopefully the Union will work with me and allow me to continue part-time.
I met up with Aaron(owner of place we rented here) for coffee and tonight I am having dinner with Faith and family. Nice to know people here.!
What a day! First I missed the shuttle and was told my only option was a $211 cab fare.... But then the shuttle driver came back to check one more time for me. God sent him! The shuttle was full and he just felt he needed the try one more time. Thank you, Jesus, you are so faithful. My TSA Pre-Check did not go through again. Because of my insulin pump and liquid medication I forgot to take out, I was searched. I had to wait a long time for female assist. I kept dropping things and my blood sugar went low. Thankfully TSA agents were super nice and compassionate. My connection in Seattle was tight- but I made it! I even slept a little on first flight . I can't wait to get home.
It was one thing after another yesterday, but God was so faitfhful. My car had to get jump started, but AK Park took care of that quickly. I lost my new Fit Bit, but found it where it fell off. I got really sick on way home, but made it and was able to hook myself up to IV fluids which helped tremendously. Casey sat with me for quite some time to make sure I was okay. Then both he and Meghan called to check on me. Life is good and God is great.
Another bump in road for me today. I just haven't recovered from the trip. My car wouldn't start again when I was trying to get to work. I exhausted myself digging out the battery charger and extension cord. I was so weak I couldn't even plug it in. I finally had to ask Casey to help. I was frustrated because it wasn't like it was some major thing to charge a battery, but I couldn't follow through to the end. Walking was hard today. I'm not talking about exercise walking, but just going back and forth to the copier. My legs feel numb and weak. I was sharing my frustrations to Meghan via phone. She is such a good counselor. She said everything right. She let me know I was expecting too much of myself and doing three loads of laundry and working was too much just after traveling 14 hours. I know she's right, but boy is it ever hard to face my limitations. Patrick is home now and hooked me up to IV hydration. I feel better. He is making me nachos and chocolate milk. Yum.
Today was another frustrating day. I woke up nauseous, but thankfully it didn't last too long. My battery was dead again and I had to charge it to get to work. My legs continue to feel numb and tingly and exhaustion is overwhelming. Carrie from Mayo called to tell me they will be switching me to oral anti-viral meds since virus is undetected. I told her what is going on and she insisted I take a couple days off work. I just can't. I'm only there four hours a day and don't feel right about not being there to help out with paperwork. It's the least I can do after being gone ten months. I made it the four hours. My battery was dead again... A co-worker gave it a jumpstart. He was very kind all day and could sense I wasn't doing well. He encouraged me to stop overdoing it. I came home and prepared dinner in the crockpot and slept for two hours. I tried doing laundry, but the dryer isn't drying clothes. Sometimes I don't know whether to laugh or cry. These are small things after what I have been through, but nevertheless an inconvenience.
The order for my prescription didn't go through so I'm still doing IV medicine at this point. Hopefully tomorrow I can pick up the pills. I'm so sick of pills. It's hard to swallow them all. I go to the Anchorage oncologist office tomorrow and will be getting some fluids. I ran out of hydration bags and know I'm really dehydrated.
I am sure my mood will improve soon. Poor Patrick. Circumstances will NOT affect my joy.
I had my appt at Alaska Oncology his morning. I saw the PA for the first time. He seemed nice and knowledgeable, but like my nurse case manager at Mayo, no clue as to what is going on with my legs. I got a liter of fluids, but it didn't perk me up as usual. I'm still tired and was unable to fall asleep during "nap time" today. I have lost 1.7 pounds since Friday. It could be because of dehydration. I can't keep my pants up even with a belt!
There was something really cool that happened yesterday I want to share. I went out to the lobby in the state office building to get a latte. It actually sounded good! While waiting for my coffee I noticed the DOC head chaplain sitting there. I had met him several times so I went over to say hi. He was happy to see me and asked me how I was and told me he had been praying for me. He then asked me if he could pray for me. Of course I said yes. So there we were, in the middle of a state building, praying. Amazing. I love the support DOC gives to religious freedom. AK is probably one of the few states left in the nation that would support prayer in the workplace.
Patrick got me a new battery for my car so hopefully I won't have anymore issues with it. I still think it's a wiring problem caused by my remote starter. Even though we don't use the remote starter at this time I think the installation caused it. He also fixed my dryer! Yay!
Peanut butter may not be good for me. This is probably the fourth time since transplant that I feel sick after eating it. I had some last night and an hour later felt nauseous. It wasn't a good night for sleeping and I woke up very early feeling very nauseous along with having body aches. I haven't gone to work yet. I'm hoping to feel better soon and then go. I wouldn't worry about it except the first day of the month I have to have four hours in order to maintain health insurance. So....if I have to work 8pm to midnight I will!
"Worship me only. I am the king of Kings and Lord of Lords, dwelling in unapproachable light. I am taking care of you! I am not only committed to caring for you, but I also am absolutely capable of doing so. Rest in me, my weary one, for this is a form of worship." (Jesus Calling)
What a difference from yesterday to today. I feel so much better. I went to work at 0545-1045 since I woke up at 0415. I love working early- it makes the time go by so fast. I feel productive when I am not interrupted as much. I took a nice two hour nap when I came home and then went for a walk. Meghan and Ollie came over to np visit for a few hours which was most enjoyable. Ollie has decided to call everyone "Bobby". It's quite adorable to hear her say, "Thank you, Bobby!" Her mother named everything Chris And Sarah when she was little, so I guess she's following her footsteps.
Casey vacuumed my floors for me while I went for a walk. How nice to come home to no dog hair! While walking I noticed my legs felt like they had electric currents shooting through them. I wish they would figure out what is going on with them.
Patrick gets back from OR tonight. It will be good to have him home.
Things are going pretty well. I'm feeling better and legs are improving too. I'm back to walking the tread mill. It's still a little cold and rainy out and I'm a little bit wimpy.
I picked up my pills yesterday to replace the IV anti-viral. I was surprised to see my share was $60 which seemed a bit much. That is until I looked at the original cost of $4127! I am horrified that pharmaceutical companies can get away with charging people these outrageous prices. Again, I am so grateful to have a good job with insurance. I do not take it for granted. I am blessed for sure.
Meghan and Ollie came over again last night and Patrick and I were again in awe over everything she did. We are easily amused and so in love with her! It will be neat to see the dynamics once baby number two is here.
What a gorgeous day we have! It's so beautiful and peaceful outside. I went for a nice walk with a friend. Between that walk and going back and forth to the copier at work, I have walked over four miles today. Feels good! I woke up at 0300 again so I was at work by 0445. If I am up, I may as well work. What else am I going to do? I'm very productive while working alone with no interruptions. Tonight I am making halibut and scalloped potatoes. I tried napping, but couldn't sleep. It's funny that I'm so tired, but can't sleep, yet too tired to do paperwork that needs completing.....
Today was my appointment with Dr. Spencer. I guess overall it was a good appointment, She thinks I am doing well. I am feeling a little uneasy after discussing my leg situation with her. One thing she mentioned was when leukemia presents, it can be in the legs. I had already considered that, but hearing it said out loud hurt. She doesn't think that's the case though. I was thinking back to last summer before I got diagnosed and remembered something happened to my legs and I was barely able to walk for a couple of days. After being diagnosed I figured it was the leukemia. So far nothing bad has shown up in my blood tests, so I am just going to trust that it's just something odd and will resolve. I also lost another pound which isn't good.
Tonight Casey, Meghan, and Ollie came over for dinner and we had a really good time just hanging out. I am so grateful to be able to visit with those I love. I am excited to go to work tomorrow and just be normal.
Testing a theory that I have developed an intolerance to nuts was not a good plan. Every time I have had peanut butter or nuts I have felt sick. Yesterday I tried some trail mix which made me sick for hours! Evidently my French baby doesn't like nuts. No more for me!
Thankfully my mom picked me up and took me in for the MRI I was told I had to get immediately. All of the sudden my leg issue has become an emergency even though I have told Mayo for three weeks about my issues. It appears Dr. Hogan was only told yesterday. I am still waiting for the results. No one has called me. He also wants me to have a spinal tap and no one has called to schedule that. They are looking to see if I have relapsed. I don't think I have, but I won't lie when I say I'm nervous. Last summer before I was diagnosed I had a similar issue with my legs- I could barely walk for a couple days. It's too similar to not be concerned.
Tears of joy.... I am at my favorite place- our cabin. It's hard to contain my joy as I sit and look at the beautiful place my husband built for us to relax in. I thank God for all he has provided us with. I just changed the bedding in our loft so there are fresh sheets for the next batch of company. It wore me out, but I am glad I can be useful. I'm too tired to walk my poor doggies though. Tomorrow Patrick will go fishing and I will hang out here. Fishing with Bane just wouldn't be enjoyable for me.
One year ago we stepped foot in Idaho for the first time. That night I found myself as a patient at Kootenai Hospotal getting a blood transfusion and awaiting test results to see what was wrong with me and why I was very anemic. Tomorrow marks the day I was told I had leukemia. I am still alive, thank you, Jesus. It seems like yesterday, but also seems so long ago. What a roller coaster of a year. Thanks for ridng it with me.
Happy birthday to my Grandpa Marvin. He would have been 96 today. One year ago on this date I was diagnosed with AML. What a journey it has been. I am alive and doing well, praise God. A year that has both flown by and dragged on forever. A year of sickness, medical interventions, multiple hospitalizations, fluctuating emotions: fear, joy, happiness, frustrations-sometimes all at the same time! A year of celebration for each new day and a year of not knowing if my last day was near. A year of amazing support from friends, family, and strangers who have become friends. A year of appreciation for everything great and small. A year of a closer relationship with Jesus. A year with a grateful heart and a year of appreciation for life.
Whatever is in store for me the next year is okay because all is well with my soul.
CONTINUATION- The Second Year. Go to menu and click on link