It's the First Day of the Rest of my Life
Sleeping is going better. I slept pretty well until 0400. I am coughing quite a bit today. I have been actually since I got home from the hospital. It's concerning of course because I don't know when I should go to the ER. We certainly don't want to wait like several medical providers encouraged me to wait prior- which ultimately ended up with me very sick and spending six nights in the critical care unit and 13 total nights in the hospital. Being in Alaska with a chronic illness is frightening. I was told by the on-call Doctor of my Anchorage oncology office that I couldn't possibly have RSV even though I was exposed and since I wasn't running a consistent fever, no need to get checked out. Two days later I called Mayo and they told me to immediately get tested. Our local hospital performed the test and the next day I was told it was negative. I continued to get worse. I saw a PA at my local doctor's office and they never tested my SAT and I was told I didn't need a chest x-ray at that time, just take some Robitussin and use an inhaler. The next day, my birthday, I told Patrick I was very sick and needed to see my oncologist. They couldn't get me in for several hours. After a couple hours I told him I thought I was dying and we had to leave now and they would admit me to the hospital. They checked my SAT and it was 88%. I was told I was being admitted and they had a room,but I had to go through admitting first. Admitting office had no idea who I was. No one put me on oxygen. I literally thought I was going to die soon. They finally get me upstairs only to tell me there is no room ready for me so I had to share a room.I told them I was immuno- compromised and couldn't share a room. Their response? No choice. They never checked my SAT and I was still not on oxygen. They told me I had to get a chest x-ray and would have to stand up for it. I complied. When finished they got me a private room, re-did the RSV test, and finally checked my SAT which was at 82%. Finally oxygen was placed on me. RSV test came back positive. Mayo was called and we made the decision to stay in Alaska rather than being transferred out. AK Regional doctors agreed to follow Mayo protocol. I think the doctors and nurses did their best,but there were so many things that didn't go right. They had me on an 1800 calorie a day diet even though I was visibly losing weight. I had to ask them to weigh me because they didn't do it unless I asked. They would send cookies and ice cream up even though I was diabetic. The carbs listed on the dietary sheet were different than what was listed on the back of items (example milk). If I hadn't been paying attention, I would have put the wrong information in my insulin pump. One day the pharmacy screwed up my medication- badly. Everyone was nice and I respectfully brought these concerns to their attention. I have debated talking to the providers who missed the boat and I think I will. They need to know so this doesn't happen to someone else.
While lying there in critical care on the Bi-Pap machine, I knew I now had an inkling of how Logan felt. I was at peace and ready to go see my savior. I had some regrets- leaving my family, but thought,"at least they won't have to worry about me anymore." I got better so evidently God isn't ready for me yet.
Jesus Today- "Sing to me, because I have dealt bountifully with you. When singing praises is the last thing you feel like doing, it is probably just what you need. I have indeed been gracious in my dealings with you- whether or not it seems that way. You have been on an uphill journey for a long time and you are growing weary. You yearn for some easy days, for a path that is not so steep. But it is the strenuous climbs that take you ever upward- closer and closer to the summit. The difficulty of your life circumstances is not a mistake. It's a matter of my sovereign will and to some extent your own goals. You desire to grow close to me and to grow more fully into the one I created you to be. Pursuing these goals has put you on an adventurous trail where difficulties and dangers abound. Some times you compare your journey with friends who seem to be on easier paths. But you cannot fully comprehend the problems they face. Nor do you know what the future holds for them."
Jesus Calling- " Waiting on me means directing your attention to me in hopeful anticipation of what I will do. It means entrusting me with every fiber of your being instead of trying to figure things out yourself. Waiting on me is the way I designed you to live: all day, every day. I created you to stay conscious of me as you go about your daily duties. I have promised many blessings to those who wait upon me: renewed strength, living above one's circumstances, resurgence of hope, awareness of my continual presence. Waiting on me enables you to glorify me by living in deep dependence of me, ready to do my will. It also helps you to enjoy me; in my presence is fullness of joy."
Oh Lord, forgive my doubts and fears. Help me to appreciate all the blessings. As my faithful husband continually tells me, "this is a journey and we will love every moment because we are together." Let me see the good in all things. Direct my path how you want my life to be. Use me to be a blessing to others. I trust you have my future mapped out. It may not be what I had planned for myself, but your ways are best.
He is risen indeed. Oh Lord my God, you died and rose again for ME! I am so unworthy, but yet you loved me so much you died so I may have eternal life. Logan is living with you and I know he is safe and happy. I miss him. Would you please send him to me in my dreams?
Last year I got to be home for Easter. My counts were not high enough to go to church, but I was able to go watch Olivienne hunt for Easter eggs at Granny's. This year I still can't go to church, but I will watch it online. I can't go to Granny's due to the exposure of everyone, but Patrick will go and videotape Ollie hunting eggs. It's the best we can do at this time. Maybe next year will finally be a normal year.
i have worn Bane for over a year now. Can you imagine what it is like to have to wear a mask in public every moment? I will honesfly tell you that it sucks. I was supposed to be free from Bane on April 1st, but that's no longer possible. Whatever it takes..... On April 20th, it will be a year since I have been in remission. Thank you, Jesus.
Last night Casey and Kelsey came over and I was so happy to visit with them. Family and friends cheer me up and take the loneliness away. I asked a few different friends to visit me this week while Patrick is away on his business trip. I am so happy he gets to leave and be normal for a few days. Hopefully he can put all this out of his mind and just be himself. He needs a serious break. He spent Friday night painting window trim and all day yesterday working on the concrete bar he is building downstairs. He is tired and weary. He is a good husband.
I am overwhelmed with happiness. I feel so good! After being depressed the past few weeks because of how quickly my life changed again, I am suddenly filled with hope and gratitude. I am not in the hospital! I have a huge support team. The sun is shining and I am in love with my husband of almost 30 years. I have children, grandchildren, parents, in-laws, family... Lots of family. I have God and hope. I am going to be okay.
Awake since 0100 again. I am so tired. I need to sleep. I balanced the checkbook, made Patrick's lunch, made my breakfast and started to put away laundry before collapsing on the couch. Energy, energy, where art thou?
I got maybe an hour nap in today. Merikaye came to visit which was great. I get so lonely without people around. I was not created to be alone. Sometimes I like being by myself, but when it is forced upon me it is not enjoyable. In a couple hours Patrick will be home. He will be busy though packing and preparing for his business trip so another lonely evening for me. I wish the babies could come over.
I don't like me much right now. Last night I lost my mind again. The hunted has become the prey, the helpful has become the helpless, the independent person has become the dependent one, the happy confident person has become miserable and lacks any confidence. Why am I allowing myself to be this way? What happened to ME? Why do I feel I must have people around me to get me through this uncertain and lonely time? Why can't I just be happy because I am alive?
I had a very good friend named Mari. Mari was a strong and vibrant woman who instilled fear in all those around her. She was powerful, smart, intelligent, and independent. Mari was diagnosed with MS and within a couple of years she was unable to walk or care for herself. This beautiful and vibrant woman was reduced to a bedridden person who was dependent on everyone to meet her basic needs. Mari quickly became bitter and angry. My children and I visited her often and we would take her to church with us. We tried to give her what she craved most- companionship. My heart hurt for her. The last couple months of her life I didn't see her as much. She had moved back to Anchorage and I was busy. I didn't know she was dying. I will never forgive myself for not being there for her at the end. I should have been there. I don't want to be reduced to an angry and bitter person. Like Mari, I detest being dependent upon anyone. I want my husband to have a real wife who is independent and self sufficient. I feel so bad for him because he knows I am at an all time low and he is flying out of state for a business trip. How hard it must be for him to leave his crazy wife, yet it must be a relief to get away from all this craziness.
I realize I may never get back to where I was, but darn it, I am not giving up. I am going to fight to survive. Please give me confidence and trust in you, Father God. Help me with my doubts and unbelief. Help me to be there for others who hurt and are scared. I have not been a good friend to the many who need me. Please forgive me for my selfishness. Help me understand this is not about ME and my desires. This is about YOU. May you be glorified in all of this. Forgive me for my short temper and anger.
I was so incredibly blessed to have visits from several yesterday. Mom, Meghan, Casey, Angie, Annette,and Debbie. Angie brought me a delicious meal. I fell asleep last night after Annette and Debbie left and slept till about 9 pm. I then baked the casserole Angie brought. I was so exhausted and bone weary, yet I could not fall asleep until about 0200. I woke up again at 0545. As Annette and Debbie pointed out, I will just have to sleep when I can. I sure would like to be on a regular schedule again. Soon, I am sure. Tomorrow is my post-hospital check with Dr. Spencer. I pray I can get off oxygen.
I gained three pounds this week! All that food ladies from the church brought is going straight to my bony hips. Not many women are happy to say that, but I sure am. I may want to cut back just a bit so it is not all at once! I am back up to 113. What an amazing ministry our church provides. Plus Meghan brought us dinner for tomorrow night- it's in the freezer. Who am I to deserve this? I am so appreciative. Not only did they bring meals, but they stayed and visited. Three ladies from my church who are all active volunteers, shared ideas with me on how I can get more involved in the community. I used to be a full time volunteer. Now all I will have more time to help others. I still have to avoid crowds and rest often, but God has things in store for me that are going to blow my socks off.
Today was my first check-up with Dr. Spencer since getting out of the hospital last week. She was very pleased with my progress and said, " I believe God has healed you and you will live a long and healthy life." She then asked me how my spirit is doing. With tears in my eyes I confessed it has been hard. She stated she understood, but believes God has great things in mind for my future. Bigger and better things. She's right. When one door closes, another will open.
I have to remain on home oxygen, but can be off it about three hours per day. I can start walking on the treadmill for five minutes at a time. Hopefully by next Thursday she will say I can completely go off all oxygen.
Today is Kirk's birthday and he came to visit ME all by himself. I love my sweet son-in-law.
My chest x-ray shows noticeable improvement. How wonderful is that! I was told if I want to hold my grandbabies, I am doing so at my own risk. Wow, that's comforting and encouraging. So basically if I hold them and get sick even when they don't appear to be sick, it will be my fault and I did something not recommended by my medical team. What do I do with that?
Heaven gained another angel today as Julie took her last breath in Indiana and her next one in Heaven. She is the third schoolmate in four months who cancer has taken. It must stop.
This morning I re-read the texts between Barry and me. Barry was diagnosed with leukemia last fall. He was an APD officer and we had mutual friends. We encouraged one another. He died a few months ago and I miss his texts. I have lost so many people recently. Most were diagnosed after me and I wonder why I am still here and they are not. What is my purpose? I miss Logan. Why couldn't he have lived? I would gladly have changed places with him if I could. I am here for a reason and I don't plan to go down without a great fight. God has plans for me. Suck it up,Marre.
I am getting my Afro trimmed today and hopefully some highlights. Maybe if I look better in the mirror I will have some confidence restored. I am excited to get out and do this normal activity. Patrick will drive me because I am still pretty weak. Tonight I have decided to have the kids and grandkids over for dinner. I am going to do it and pray for protection against any and all illnesses.
Relationships- life is all about relationships. Whether it is a romantic relationship, one with a family member, co-worker, friend, or neighbor, we have relationships with a diverse group of people. We are often disappointed in relationships because we might feel our efforts are one-sided or we aren't getting our needs met in a way that we desire. Sometimes the people we feel the closest to disappoint us the most. The ones we thought would support us and be there for us, abandon us when things get rough because maybe they can't take the sadness or the reality that change can happen to them too. I think of a family we had been friends with for years. A wonderful family who supported us so much when Logan was sick and we felt almost like family. An incident happened that upset them and no matter how much we tried to make it right, they refuse to have anything to do with us. How can one family who seemed to love and care for us so much just turn off their feelings like one turns off a water faucet? And why does it bother me all these years later? The only thing I can think of is because I am not wired like that. I love my relationships with people and I never want to turn my back on someone. Relationships are important to me. Maybe because of my relationship with God who has shown me unconditional love. God does not disappoint me. People can, but God remains true and just. When you feel the sting of a friendship failure, remember that God is your best friend and advocate. His love will never fail you.
I think about the number of people I know personally who are divorcing after years of marriage. My heart hurts for them. How does one start over? How difficult it must be in all aspects; physically, emotionally, financially, and spiritually.
Last night I had my parents, children, grandchildren, and a couple friends over. My heart just soared with happiness as I watched my adult son and daughter interact with mutual respect and admiration for one another. They looked so happy together! I watched my son and daughter-in-law share intimate looks as they chatted freely with each other about the possibility of soon becoming homeowners. I watched them play with their nieces and heard them make a comment about their future children. I watched our daughter lovingly care for her children. Life was perfect last night. I held my grandbabies for the first time in over a month. Ollie said, " Why can you hold me now, Grammie?" I am amazed at how much she understands about our relationship. Grammie is not well, yet she accepts me with all my limitations and embraces me when she is allowed. Ailynn smiles at me even if I have a mask on or oxygen in my nose. She doesn't care. That's true relational love. Visiting with my parents was priceless. I am so fortunate to have them. That is true, relational love. Patrick took me to my hair appointment and picked me back up. I wasn't finished yet, so he came in hesitantly asking if it was okay if he watched the rest of the process. Two years ago I never would have allowed him to see me in the middle of a hair cut and highlights. Now? We have pretty much shared everthing there is to share. He just beamed with happiness because he knew i was excited. I"m so thankful he loves me no mater how I look. That is true relational love. Last night he cooked all the food for the family dinner I planned knowing he was swamped with work on the house. He never complains, never begrudges me anything. That is true relational love. I am blessed.........
My hair! Wow! I have a cut and highlights and feel like a new person. She straightened it and styled it. I didn't wash it today because I wanted one more day of not having to manage it. I'm both excited and nervous for tomorrow. I hope she didn't cut all the curls away. She seemed to do a lot of cuttng. From what understand the curls don't last long so I want to enjoy them while I have them. But no more Afro!
Today we went for a walk around the block. I held on to Patrick's arm and gosh darn it I did it. I'm no where ready for climbing the Butte yet, but dang it I am getting stronger. I even picked up a bit of trash in the yard. Progress- it's a good thing.
Yesterday I took on the project of cleaning out a couple closets. Let me re-phrase, I cleaned out some of the clothes- the closets still need help. I am packing up some work clothes I unfortunately won't be using for awhile. It took me hours to go through everything and organize a bit more. It's a successful feeling to know I accomplished something more than washing dishes. I also made dinner last night which made me feel a little more useful. Today I have some family members coming over for lunch and I am so excited. I crave socializing so much. I am used to being around lots of people. Again, I am a relational person.
I am in a confused rut. My coveted prayer times in the morning are not happenIng. I feel at a loss for words. My prayer life is normally pretty powerful and I talk to God all the time. Right now I feel like I don't know how to start the conversation. I believe it is time for me to turn the praise music back on and just praise him. The prayers will flow again. In the meantime God is talking to my soul and hearing all I can't audibly speak at this time.
Jesus Today- " Be constant in prayer- at all times, but especially when you are struggling. During trials, you need close communication with me more than ever. However, your ability to concentrate may be hampered by stress and fatigue. So make full use of the amazing strength within you- my spirit. Ask the Holy Spirit to control your mind: to think through you and pray through you. Your prayers need not be pretty or proper. Just let them flow out of your current situation. As you stay in communication with me, I help you be steadfast and patient in suffering."
" The mind of a sinful man is death,but the mind controlled by the Spirit is life and peace." Romans 8:6.
Jesus Calling- " I meet you in the stillness of your soul. It is there that I seek to commune with you. A person who is open to my presence is exceedingly precious to me. My eyes search to and fro throughout the earth, looking for one whose heart is seeking me. I see you trying to find me; our mutual search results in joyful fulfillment.
Stillness of soul is increasingly rare in this world addicted to noise and speed. I am pleased with your desire to create a quiet space where you ans I can meet. Don't be disappointed by the difficulty of achieving this goal. I monitor all your efforts and am blessed by each of your attempts to seek my face."
Lord, hear the prayers of my spirit. There are so many who need your comfort and salvation right now. Please help me not be so wrapped up in my own difficulties that I forget to pray for many friends who hurt right now. This is not about me, Father. This is about you and how you rescue us all. You are an amazing God and I am thankful for the people in my life who remind me to trust you and put you first. In God we trust! Let this nation be healed in the name of Jesus. Where there is doubt, bring confidence. Where there is disbelief, bring belief, replace selfishness with selflessness. Bring hope to the hopeless. Use ME Father God. Use my situation to bless others and give them hope.
Last week my doctor asked me how my spirit was. She knew. She ordered me (in the way only doctors can) to get Joel Osteen's book, "I Am." I've heard of him of course, but what I knew about him is he is a fancy preacher in a fancy building and lives in a fancy house with all his incredible wealth. So to say I was hesitant to get his book would be an accurate statement. Amazon has a deal where I could get two audiobooks for free. If I'm not pleased with the service then I can cancel and not be charged the $14.95 monthly fee. I'm all about a good deal and I sure don't want to walk into her office Thursday and admit I didn't do the one thing she asked of me. I have listened to the first four chapters and it solidified what I already stated this morning. God knows what's wrong. He needs me to praise him and prophesy healing upon my body and mind. I must affirm this with my words. I must stop focusing on what I can't do and focus on what I CAN do. This is a season in my life. It will end. Death will not defeat me and my life isn't destined to be one of constant medical issues. God IS restoring me and I believe that completely. So right now I am claiming victory in Jesus. I am healed. I am stronger. My family will serve God all the rest of our days. I am beautiful because I am a child of God and he wonderfully and fearfully made me.
Yesterday my mom, Granny, Aunt Connie, Meghan, and the girls came over for lunch. How wonderful it was to sit at the kitchen table with them. I thoroughly enjoyed our visit and look forward to many more times sitting around the table philosophizing about life. Casey stopped by and entertained Ollie as she is not used to not being the center of attention. She and Uncle Casey had fun.
This morning I did 15 minutes on the treadmill in the morning and 15 minutes at night. Granted I am only going 2 mph at this time, but hey, it's progress! I am also back to doing my weight bearing exercises, albeit considerable less reps than before. I will get there. I am trying to go without oxygen 3 hours per day as the doctor ordered. My SAT isn't where it should be and I have a feeling she won't release me from the oxygen at my appointment tomorrow. As long as they heal soon, it's okay. My lungs just don't feel right. I can't explain the feeling really, but something seems off.
Mayo added a day to my schedule so I now have 12 apointments spread over two days. I had to change my ticket, hotel, and car rental which turned into a mess. Finally got it figured out. Being sick is not cheap.
I had forgotten I still had a DVD online course in substance abuse treatment to finish. I hope to finish that up next week and get my certificate of completion. I would love to facilitate a substance abuse recovery group. What a need there is in our Valley.
I am sitting out on my deck soaking up the sun. It's 48 degrees and sunny. The best part is I no longer have to wear Bane outside! Unless someone is mowing, raking, it's dusty, there are fires, or a volcanic eruption. Other than that I am breathing fresh air for the first time in a year and let me tell you, it's amazing.
I had a great doctor visit today. My lungs sound really good and Zach (PA) said as long as my SAT is above 90 he's okay with it. I can now go six hours a day without oxygen. This really will free me up. I drove into Anchorage which is the first time I have driven in a month. I did okay! I see a bit more freedom in my future which is fabulous. Mom had to drive home though because I was worn out after grocery shopping. I am doing things for myself again! It feels so good.
Yesterday I went by work and visited with some of my co-workers. It was so nice to see everyone. I was asked by many, " When are you coming back?" I wish I had the answer for that question. It's all up to God and the plan he has for my life. Doors will be open if HE wants them to be and doors will be shut of HE has other plans for me. All I know is that right now my job is to take care of myself and heal. As I told more than one person yesterday, this latest illness knocked me on my butt. But I am strong and determined and I am picking myself up and wiping off the dust. I don't wallow in self-pity but for a few minutes. I visited with Granny after going to the office. It feels so good to have six hours free from oxygen and the confidence to drive again.
I accomplished some things this weekend. It may sound silly, but I'm pretty darn excited I finally got a few projects done. I packed away a bunch of clothes I won't be needing for awhile, went through the gazillion pairs of shoes and bagged up a bunch to give away, and did some organizing. Right now I'm about to fall asleep. I think it's nap time after writing this.
Saturday night Meghan, Kirk, the girls, and Casey came over to visit. We had so much fun and they stayed until 11:15 p.m. I enjoyed visiting with them and watching the girls play in the bath. They are so cute! After they left I walked a mile on the treadmill and didn't go to bed until 12:30. Yesterday I walked one mile on the treadmill, then hiked around on some land Meghan and Kirk are looking at. I was so tired I fell asleep as soon as I got back to the truck. When we got home I went to bed and slept for 2.5 hours. I don't have the stamina I did before, but by golly I'm trying hard to recuperate.
I have yet another friend who was diagnosed with cancer. Ingrid was diagnosed with Multiple Myeloma, which is a cancer of the bone marrow, specifically the plasma cells. There is no known cure for this terrible cancer, but there are things that can be done to prolong life. Last year I met a man at Mayo Clinic who had his transplant the same day as me. He had MM and had a very positive outlook on life. He flashed back in my mind when Ingrid told me her diagnosis and I prayed for him again. ingrid and I used to work together at Alaska Family Services. I was working with victims of domestic violence and sexual assault and she was in charge of the anti-tobacco program. Our offices were close by and we worked in a building that didn't have a lot of traffic in it so we spent a lot of time getting to know one another. I told Ingrid Logan's story one day and she was overwhelmed with grief. The next day she brought me a beautiful framed picture of an eagle with the verse, "But they that wait upon the Lord shall renew their strength. They shall mount up with wings as eagles; They shall run and not be weary and they shall walk and not faint." You will walk and not grow faint, Ingrid. God has this. This picture hangs just below one of a young boy hugging Jesus. It says, "Then you will call and the Lord will answer; You will cry, and He will say, Here I am." Isaiah 58:9. The picture she gave to me is in my living room and I always think of her when I look at it. She showed me such compassion and care. Now here she is fighting this horrible fight. She is a strong woman and a devout Christian. I have no doubt her faith and spirit will remain high, but of course there will be bad days. I know this all too well. Some ask, "Why is it always the good people who have such tragedy?" The Bible says, "It rains on the just and the unjust." Meaning, both good and bad people are subjected to all sorts of things. It's what we do with our circumstances that define us. Let's say we are given bad news or a bad medical report. What do we do with that? Well we look to our God and we pray for strength. It is true, God will not give us more than we can handle. We are strong and mighty warriors in Christ. We should not sit around and feel sorry for ourselves. We pick ourselves up off the floor, dust ourselves off, and go back in the ring. This chick isn't giving up. And I know Ingrid isn't giving up. We are believers and we are fighters. We are in the ring and we will be the winners. When that bell rings we will raise our hands up and give thanks to God for guiding us through the fight, the battle, the worst thing we could ever imagine happen to us.
I finally realized that no matter what, God knew this was going to happen to me. He knew I was going to get leukemia 16 years after Logan died. I can't even say I was shocked, because he prepared me 2 months prior to diagnosis, just like he prepared me a few days before Logan was diagnosed. I don't want to sound like I'm some special person- more in tune with God than most, but I'm telling you, he talks to me and I know ahead of time when something bad is going to happen. My spririt is connected to HIM. I'm not sure if that's bad or good...Just kidding, I know it's good, but sometimes having a little bit of time when I feel at peace woudln't be so bad! But I feel pretty good knowing he prepares me.
It doesn't matter what we are going through whether it's grief, addiction, an undiagonsed illness, and immune disorder, migraines, financial stress, worrying about children, etc. Our job is to proclaim victory over the illness/problem and BELIEVE God will take care of it. Our job is to keep our faith and never give up the fight. Get back in the ring. The battle is not over.
Timing...We live in a society that demands instant gratification. We live in times when we rob Peter to pay Paul. We want to keep up with the Jones's. We want the best of everything. We expect to be rewarded even if we know we don't deserve it. But what about those who ask God for blessings and they have not yet seen the fruit grow? What about those who truly believe and ask God for something very important, yet there appears to be no answer? First of all, we must trust God's timing. Are you praying for a promotion? Healing? Doors to be open? Freedom from addiction for you or for a family member? If God gave us everything we asked for immediately when we asked for it, there wouldn't be a whole lot to credit him for, would there? When you pray for fresh annointing and bring your troubles to God, he WILL answer you in his timing, not yours. Perhaps it isn't the answer you are looking for. We certainly didn't get the answer we were looking for when Logan died after we fervently prayed and believed for complete healing. Why? I have no idea. God does though. I may not like his answer, but he is my God and he has his reasons. I like to say that when I walk through those pearly gates the first thing I'm going to ask God is why he took my baby. But then I immediately think, "it won't matter anymore when I am with him again."
I've been wrestling with the agony and frustration of this set back. Things were going so well and I was doing more and more normal things. God was glorified in my healing. Then I got sick. It wasn't a suprise to God. He knew this was going to happen. Let me tell you, our God WILL be glorified through this. It's all in HIS timing. I will be healed. I believe it. But I am not going to take the glory or the credit. That all goes to God. He will show the world what he has done. Do not be discouraged, for our God knows all things and he will use all things for his glory. I must be patient and remain encouraged. I must pray for fresh annointment and proclaim thanks in advance for his healing. I believe. I am encouraged. I am ready to see what God has in store for me and my future.
Jesus Calling, "This is the day that i have made. Rejoice and be glad in it. Begin the day with open hands of faith, ready to receive all that I am pouring into this brief portion of your life. Be careful not to complain about anything, even the weather, since I am the Author of your circumstances. The best way to handle unwanted situations is to thank me for them. This act of faith frees you from resentment and frees Me to work My ways into the situation, so that good emerges from it. To find joy in this day, you must live within its boundaries. I knew what I was doing when I divided time into twenty-four hour segments. I understand human fraility and I know that you can bear the weight of only one day at a time. Do not worry about tomorrow or get stuck in the past. There is abudant life in my presence today."
'I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus." Phillipians 4:13, "I can do everything through him who gives me strength."
Today is the 11th month since I had my transplant. I had my weekly check-up and all looks really good. I am down to 12 hours per day on the oxygen. Hopefully I will be totally off next week. I gained another two pounds and Dr. Spencer is very pleased at how well I am doing. God is just so amazing! I believe I am healed. While in Anchorage, I got to have a rare lunch with Patrick which was super nice.
It is a beautiful day and I am enjoying the sunshine on our deck. Annette is going to come over after work and take a walk with me. Summer is near. The leaves are already coming out which is super cool.
Last night Ollie spent the night. We played a lot of "kitchen", horse, and read many books. By 9:00 pm this Grammie was worn out. Papa took the reigns. She was up by 0800 this morning and I made a big breakfast expecting her parents and Casey. But it was just the three of us so I will be warming the leftovers tomorrow morning! After more horse riding, kitchen play, and books, and a walk, Grammie was ready for a nap. Papa took over again. I wish I weren't so tired, but I am. Last night Ollie amazed me because when she walked in, she said, "Grammie why aren't you wearing your oxygen?" How does a two and a half year old remember what oxygen is? She is so loving and forgiving for my limitations.
This afternoon I visited with Granny, my great uncle Walt, and cousin Margaret. It was so nice. I have such a large extended family and rarely see them. I realize how blessed I am and how important it is to take the time to be with them. Afterwards I went to the store to pick up a few things. I ran into two of my favorite DOC employees. I was greeted with a big hug by each as they shared their genuine care and compassion for me. I have worked with a lot of amazing people. I loved my job.
I got some chores done and got a walk in with my friend Mike. Patrick went fishing most of the day. A very well deserved fishing trip. Now he's doing more repairs on the house. I admire him and all caregivers. Not only does he take care of me, but he takes care of everything around here. I wish I could help him. I can't wait until I can at least vacuum and dust again. It's so unfair he has to do it all, but he never complains. Caregivers deserve special recognition, especially my caregiver!
Tomorrow I am going to have some family members over for lunch and I am very excited. We are going to have ham and bean soup and corn bread- a favorite of mine, but Patrick detests it. The only time I make it is when my family comes over.
The countdown has begun for our trip to Indiana and to Mayo. We only have a few short days in Indiana to cram in seeing old friends and family. I sure hope we can see everyone! I am very excited about seeing my old friends from school too. It's been way longer than I care to admit! A lady doesn't discuss her age.....
I am telling you I need to get all better and SOON! This morning I was puttering around in the kitchen like a busy bee. I made Patrick a smoothie and coffee and packed his lunch. Then I started preparing soup, corn bread, fruit salad, and dessert for my family luncheon only to find out 90% of them couldnt come. I seem to depend on others to entertain me. I had some downtime and wanted so badly to vacuum or rake my yard, but I am still not allowed. I feel like I take more than I give around here. Doesn't it sound silly to whine about not being able to do chores? I just get sick and tired of being told by doctors that I can't do something because I "am sick and tired". Oh the irony!
Finally, my first guest arrived. Anita Cork is a beautiful lady whom I have had the privilege of knowing since we moved to Alaska in 1983. Anita and her husband Barney went to the church my dad pastored at. They were great friends with my parents. We spent a lot of time together and they loved on each of my three children. Anita made my wedding dress and it was gorgeous. I reminded her today that this summer it will be 30 years since our wedding day. She told me a story I didn't remember hearing before and it cracked me up. When we got married, the church was newly constructed and not complete. Anita was the only one who thought about the unfinished wall showing in our pictures we would take behind the cake. As she was there alone that morning, she climbed on a folding chair to paper that unfinished wall. The chair folded, and down she went! She got up, brushed herself off, checked for broken bones and climbed back up to finish the job. That's true friendship! Her husband, Barney, passed away almost 9 years ago. Everyone who knew Barney misses him. He was truly one of a kind. I am so glad I got to see Anita and my mom together again today. It brought back such fond memories.
Meghan, Kirk, and the girls stopped by for soup after leaving Ollie with us as they ran errands. I got to hug on my precious girls. It helps so much. Tonight I got to walk again with my friend Annette. I only had to rest three times during the walk. I feel stronger every day and I am so grateful. Now to have more patience.....
I am happy to announce that today marks one full year I have officially been in remission. How cool is that!? I made it a year! And then next month it will be a year since my transplant. Like I said from the beginning, I never looked at statistics or asked the doctors what they thought my chances were. Statistics lie as we found out with our precious Logan. Only God knows the truth. I'm just happy I have been alive for the past 18 months since diagnosis. Despite it all, it has been a wonderful 18 months. I amazed myself at how well I got through the most awful things. I do understand it was only by the grace and strength of God. For the most part I remained courageous and hopeful, never bitter. Angry sure, but mostly at myself for not being able to do what I want and desire to do. I have met the most amazing people on this journey and my life is forever enriched because of them- because of YOU!
Today my heart is heavy for so many. My dear friend Ingrid is in the hospital with uncontrollable pain. They still struggle to find out what is wrong. Now they suspect it may be something other than multiple myeloma. Unfortunately they can't diagnose her in Alaska. Her biopsy must be sent out of state and of course that takes time. Tomorrow I will go and visit her after my check-up. I pray I bring her joy and comfort and not sorrow.
I also think about the mother of a friend of mine with AML who recently relapsed. I have been there and I know how frightening it is. I think about the step-daughter of a lady I've known for years. She also has AML and after a horrific experience with chemo, has decided to be treated by a naturopath Doctor. I pray it works.
I hurt for a friend who hit her head at work and has a head injury and can't work now. I hurt for the family of a young man in our community who was just killed in a plane crash. The world is a hurtful place to be. Thankfully it is not our forever home. My goal and desire is to be there to assist those in need whether it's emotionally, physically, financially, or spiritually. God has blessed my family and we desire to bless others.
Yesterday I had a good doctor visit. I am now able to be off oxygen! I need to monitor my SAT for the next week and if it remains okay I can return the equipment. I'm grateful for that. My lungs did sound a little wheezy, but overall I am doing alright. My weight is back to where it was before I went into the hospital this last time.
After my appointment I went to see Ingrid in the hospital. It hurt me to see her in such pain. She is being brave, but she's in limbo and scared. She just needs to know the diagnosis and the treatment plan.
I want to be an encourager for her and the many who are hurting.
Yesterday I either did something stupid, or I am making progress. I put Bane and gloves on and started cleaning up things around the yard. I don't think my doctors would be happy. I worry I put myself at risk because of the dust, but it sure felt good to help. Sometimes I just wander around the house looking for something "safe" to do. It gets old. I got to visit with one of my dearest friends, Dorothy as well. It was great catching up with her and hearing about her adventures in China. Traveling the world is something I enjoy and hope I can return to traveling in the near future.
Last night Casey, Kelsey, Meghan, Kirk, and the girls came over to visit and for dinner. We had such a wonderful time. When I got too tired to do much, I laid in bed and Meghan and Ailynn hung out with me. There is nothing on earth that makes me as happy as having my adult children over and seeing them play with the babies. Ollie spent the night and I wonder how long it took Papa to get her to sleep. I'm making a big breakfast and plan on returning to the yard with Ollie after while. She can either play or help me. I can't wait to be with her. I always have more energy in the mornings.
I did get some one on one time with Ollie yesterday which was fabulous. We made cookies. She loves baking with Grammie. Later I went to the store with Meghan. After I got home I fell asleep on the deck. The energy just isn't here yet, but I am trying hard to recover.
One year ago I posted something on FB about statistics. It was interesting to come across it after Ingrid had just asked me if people had inquired about my chances of living. Really, people! Have some tact. At the time I understood, but now that I see it happening to Ingrid I can't help but shake my head at the insensitive comments. This is what I wrote: " The world is obsessed with statistics. So many want to know what my chance of surviving a bone marrow transplant is. I'm asked by everyone from strangers, friends, and an Alaska Airlines flight attendant. Truthfully I don't know and I don't care. When Logan was diagnosed I was obsessed with statistics. He had an 85% chance of survival. That didn't work out. Statistics lie. They can be manipulated to read what you want them to read. In college I took a statistics class from a professor who boasted he manipulated statistics to lean in favor of whoever hired him in court . Statistics mean nothing. I will survive or I won't. I was told I only had a 40% chance of re-achieving remission after I relapsed in January. I am in remission again. No matter what doctors say, I choose to believe God is healing me and I will survive. I am determined, I am full of faith, I am putting all I have into living. Who cares about percentages!"
Then Jesus said to his disciples, "Therfore I tell you, do not worry about your life, what you will eat or about yor body, what you will wear. Life is more about food, and the body more than clothes. Consider the Ravens- they do not show or reap, they have no storeroom or barn, yet God feeds them. And how much more valuable are you than birds! Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest?" Luke 12:22-26
Worrying doesn't stop the bad from happening, it only stops you from enjoying the good.
I need to take my own advice about worrying more seriously. I have been concerned about the soreness in my muscles and joints; particularly my knees. When I sit for an extended period of time I have difficulty walking. Once I have walked a bit I am okay, but initially I struggle and it hurts. All sorts of things run through my head, especially wondering if Leuk is back and if he is in my bones and affecting my muscles. I will bring up my concerns to Dr. Spencer on Thursday, but I also give my worrying to God and I will focus on the good things rather than the concerns.
Yesterday Mom, Meghan, and the girls and I met at Granny's for a yummy lunch. We were all worn out, I went to bed when I got home and slept for 2.5 hours. Mom and Granny took naps too they said. I realized I am in an older generation. Meghan cleaned the kitchen and Granny told her to sit down and she would do it later. I told Granny that Meghan does the same thing at my house and to let her be. Later I told Granny that she, mom, and I are gimpy and Meghan is not so we need to let her do these things. I never thought I would see the day when I can't just jump up and do it all. I am a giver, not a taker and this is hard for me to sit back and watch others do things I cannot. There are days I am so frustrated. Some days I feel things are going well, then I am smacked in the head with reality. Patrick keeps telling me to stop worrying and to remember if he was the one sick I would not hold it against him. He is right of course, but yet I still struggle with the guilt of my inadequacies. I took Ibuphrophen before bed as Patrick suggested. I slept great and woke up wIthout any pain or discomfort. I have felt great all day. On days like this I feel as if I could conquer the world. That is after a nice and long nap.
Yep, Leuk is dead. I walked over five miles today! Not all at once, but I did the treadmill this morning, played with the girls, and walked with Annette. It's not even 8:00 pm and I'm in bed. I am exhausted. I am strong! I am encouraged. Now if I can get Dr. Hogan to release me, I think my job will be waiting for me despite all the absences and the set back. How thankful am I to have a possibility of returning to the job I love so much. How grateful am I to the supervisors and administration that they even consider this! It makes me feel valued and appreciated. I put my all into my job and I am thankful my efforts are noticed. I am so appreciative of the department for the allowances they have made on my behalf. I do not take anything for granted.
Meghan helped me bottle wine today at Valley Winery. We had an appointment tonight, but Patrick wanted to go fishing so Meg helped me out. Ollie "assisted" and Ailynn played. It was a lot of fun and I enjoyed hanging out with them. They came over afterwards and Meghan worked on dusting the office while I entertained the girls in the yard. I was reading to Ollie and got out of breath. That happens quite a bit. I said, " just a minute, I need to catch my breath." Then I sighed. She mimicked me perfectly- even the sigh! She's such a copycat. Ailynn just grins that toothless smile of hers. Both girls are a delight.
Yesterday was a great check-up with Dr. Spencer. She thinks I am doing really well. I do feel so much better. I have more energy and stamina than just a week ago. I am completely off oxygen. My weight is up to 123.6 which is great. Things are certainly looking up as I am almost at my first post-transplant birthday. God has done amazing things over the past year and a half. Simply amazing. It really looks like I will get to return to work the end of May and I am so excited. To know what I have went through and how God keeps allowing me to bounce back is just incredible.
My cousin, Matt, is in the hospital with liver failure. I am going to go see him today. He needs to know God. I would love to pray for him if he allows me to do so. Yesterday I saw Ingrid. She is still waiting confirmation of her diagnosis, but she has a great attitude and a heart full of hope.
There are so many agonizing circumstances in this world and so many discouraging moments. I know, I have been there. But there is hope! These thing shall pass away and there won't be anymore sadness. Today I encourage you to listen to these words. " May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13
This is my third tonight updating my blog. I wrote two different lengthy updates and neither one saved. I am trying to be patient, but am I ever frustrated!
We spent three delightful days at our favorite place- our cabin. I was able to get lots of rest and Patrick got lots of work done. He's so good about not making me feel guilty for resting. He keeps telling me if roles were reversed, I would be understanding too. He is right of course, but I wish I could do more. My energy is definitely improving and I feel stronger everyday. I try to get at least three miles in a day between doing chores and taking walks. I got to walk with our friend Gretchen on Sunday and enjoyed our visit.
Before we left Friday I stopped to see my cousin Matt who is in the hospital for liver failure. Matt is a chronic alcoholic who continued to drink even though he knew his liver was shot. It's hard for most of us to understand why someone would use a drug that damages their body. So many of us are simply trying to live. I shared my love for Christ with Matt. He has never known God. I encouraged him to take a leap of faith before it's too late. I told him if anyone had reason to be mad at God it would be me. After all, I lost my first-born son to leukemia complications and then I got it! But I am not mad at God. I love him and I accept his plan for me. Someday I will be in his kingdom with my son in my arms while I gaze at my savior. What an amazing time that will be! No more sadness, strife, hectic life, or pain. While on the treadmill tonight I told Jesus that now would be a good time to come back. This world can sometimes just suck. There is so much pain and suffering. I don't know how people handle it without God. I just wouldn't be able to.
My friend Ingrid found out that instead of having Multiple Myeloma, she has Ewings Sarcoma. Neither cancer is good. I know Ingrid can beat this. She has strong faith and a huge support system. It will not be easy. I watched Logan's friend David go through the same battle. David was a beautiful soul like Logan. He had a sweet spirit and kind eyes. He fought valiantly. Lord, heal our pain.
Mom and I leave Friday night for Indiana. We are very excited to see friends and family that we haven't seen in many years. We are staying just a few short days and then will fly to Rochester for my one year post-transplant check-up. It's hard to believe it's been a year. Somedays it seems like yesterday and other days it seems so long ago. God has been good and faithful.
Today was nap day. I hadn't taken a nap since Saturday I think. Not sleeping well had caught up with me. Tomorrow night flying all night on the plane is going to be tough. I hope Mom and I can both sleep. We don't want to miss a moment of visiting with our loved ones.
Patrick said tonight," I bet you are excited about your check-up." I most certainly am! One year post-transplant with few complications. I am flying high with excitement! I am so thankful for every good day. The good days come far more often than the bad days. I feel so healthy now. I celebrate my recovery and hurt for the ones who aren't doing well.
Today I learned that the step-daughter of a friend relapsed and she doesn't want to do more chemo. She had a terrible time with it before. i also learned that the mother of a friend also relapsed. Both ladies have AML like me. Both Will likely need a transplant to survive. Yesterday I found out that my friend's family member has severe GVH issues and is not doing well. Her transplant was before mine. So much pain and suffering. Lord, hear our prayers. Comfort these ladies and we ask for complete healing upon each of them. I want to start an online support group, but I'm not sure how. I feel led to do it.
Today is an amazingly beautiful day! It is so warm and sunny out there. I already took a walk and did some yard work. I did some things I shouldn't have done. Patrick called while I was doing it and asked if I was wearing a mask. After listening to his lecture, I put it on. I know it's stupid not to do it but I am so tired of being tethered. I only slept about 3 hours last night and we are flying all night tonight. I think I will have to be taking a nap. I still have to go drop off things at the Recycle Center and pick up flowers for Meghan and Dakota to celebrate their college graduation.
What a whirlwind these last couple of days have been. The graduation went well and it was nice to see the girls get what they worked so hard for. I enjoyed being with my family and Meghan's family. We rushed to the airport after graduation and flew all night to get to my home state . Indiana- how I loved growing up here. Since we have been here we have had the pleasure of seeing family and so many friends. Tonight I met up with many I went to elementary through sophomore year with.. It was just wonderful to see the people who supported me through this journey of killing Leuk. Earlier we went to the house where many of our friends from the days my dad pastored a church gathered to visit with Mom and me. We feel loved! This morning old family friends acknowledged me in the church service and the pastor said they have been praying for me. Obviously it worked.
One big damper to our day was the loss of my cousin Matt. He died this morning- on Mother's Day. My heart hurts for all of his family, but especially his mom. Mother's Day should be about joy, not pain. Mother's Day is always bittersweet for me. I love my children and my daughter-in-law and son-in-law, yet I grieve the loss of my first bor, Logan. This day is never the same for we mother's who have lost our children. I think of my friend Michelle who lost her son Christopher also on Mother's Day. Christopjer and Logan were friends from Ronald McDonald House. They had the same diagnosis. My heart hurts for all these mother's. I thankful my cousin Matt did accept the Lord before he died. He is in Heaven with Logan.
i am thankful I am with my mom.
How do I cram 16 years in three days? That's how long it's been since I have been "home". Mom and I have seen so many people who are dear to us, but there are so many more to see and little time left. I am exhausted and I bet Mom is too.
Today our morning started out with a visit with old friends from Freetown. We got to see Sherri and her mother Beverly. We went to church with them when I was a small child. Sherri and I have kept in touch sporadically over the years. When she learned of Logan's death after several years had past, she sent me a book she had written about the journey her family went through, and continues to go through, after her daughter was gravely injured in an automobile accident. Sydney was five years old when everyone close to her had their lives changed forever. Sydney's brain was injured and she was also paralyzed. She continues to have multiple seizures per day. Her family watches helplessly as she suffers and tries to communicate. Sydney attempts to talk, but she is non-verbal. It's obvious to her family when she is pleased or displeased, comfortable or uncomfortable. But for those of us on the outside, we have no idea. She is now 25 and her situation remains dismal, yet her parents are forevermore hopeful that a miracle will take place. The courage Sherri and her family show amazes me. What love they have for this sweet girl whose life was basically taken away from her. How unfair! They selflessly give their time, energy, finances, and freedom for their child. Sherri showed her bewilderness about the situation today. She talked about Gerald, who was carried into that church every Sunday, so many years ago. His parents, Mabel and Foy carried him in and laid him on a cot that sat beside the pews. They were loving and faithful parents. Gerald would "sing" with the rest of us. To my childish ears, the sound was strange as he was basically non-verbal as well, but even as young as I was, it was obvious Gerald loved Jesus.
Sherri told us how she learned so much from Mabel, Foy, and Gerald and how it helps her understand and cope with Sydney's needs. To me it's obvious she is blessing others in sharing her story and faith with others. Sherri and her family are inspiring and encouraging to others who are also going through a similar situation. They didn't just give up or give Sydney to the state to take care of. They have put their own needs aside and love her like God loves her. Sydney is similar to Gerald in showing her love for Jesus during the music worship at church. Sherri and Wayne are like Mabel and Foy who gave up so much to take care of their child. Sherri may be exhausted and confused as to why this happened to them, but I could honestly tell her today that she was given this burden so she may be an encourager and blessing to others. She amazes me- their whole family amazes me. Their belief and conviction that there is a God and he is in control blesses and inspires me to be a better person. I know the Fritz family will someday hear these words, " Well done ye good and faithful servants!"
We also visited with my old friend Marla and her friend Tammy. Tammy and I have been communicating for a few months after Marla mentioned to me that Tammy had been going through treatment for pancreatic cancer. It was nice to meet her in person. She is a lovely woman and is doing quite well. She is working 10 hour days in a factory. I am amazed at her stamina. She is inspiring.
Tonight I am at my friends Darlene and Kevin's house. Darlene and I have been friends for many, many years. She came to see me in Idaho and in Minnesota while I went through treatment. Tonight we went to see her mother-in-law who is in a convalescent center recovering from various health issues. Kitty is someone I met years ago when they all came to Alaska. I have seen her several times since then. We were chatting when her nurse came in and somehow shared the story that nine months ago her four year old daughter was killed in a car accident. I immediately thought about Sydney and her family, I also thought about my family. Like the nurse, I had three children. I lost my oldest and she lost her youngest. She lost her marriage as it was not salvageable after the loss of their daughter. Her older children turned against her and the man who hit them is suing her. She said she often sleeps at the cemetery where her daughter is buried. Despite all this tragedy, she shared her faith and the love of God.
While my heart hurts for the Fritz family, for Tammy, and this nurse, Laurie, I marvel at how each of them inspires me to be stronger, to be a better person, and to be better at sharing my faith with others. They are amazing people. It's so easy for us to whine and complain when there are people much worse off then us. Lord, please help us to appreciate what we have. Teach us not to complain about the little things, but to be grateful and appreciative for what we have. Help us to value each other and ourselves. Help us to value you. Help us to share our difficulties with others, not so we can vent or complain, but so we can honor you by encouraging others. Thank you for Sherri and Beverly's honesty about their concerns and fears, thank you that Tammy is doing so well, and thank you that Laurie opened her heart up to this stranger. We trust you to bless others through our experiences. Help us to share in a positive way. Amen
I am sitting at the Indianapolis airport waiting for my flight to Minneapolis. It's time for the check-up and I am almost one year post-transplant! Today is my mom's birthday and I am thankful I got to spend these last few days with her. We had a marvelous time visiting friends and family. I was happy I got to visit the grave of my Uncle Terry before leaving. He was so much of a support to me during and after Logan died. He and Aunt Lois were my confidanfs and encouragers. They are both with Logan now. Life IS really too short. We must make the most of what we have and always have a thankful and grateful heart.
Last night we got to see many family members we haven't seen in years. It was a fantastic gathering at my cousin Linda's house. She and Steve have a beautiful home and family and generously allowed us to get together there. I love my family!
Mayo Clinic.....it was bittersweet driving into Rochester today. I felt joy that I am alive one year later, but almost wept at the thought of how sick I was just a year ago. I will forever be grateful each day I wake up. I will be forever grateful for each day I am free to roam around and not be bound to a hospital bed or tethered to Tad. I will be forever grateful for what God has blessed me with.
Last night I had an interesting conversation with a lady named Marla on the flight between Indianapolis and Minneapolis. I don't normally talk with people on planes, but for some reason felt like making conversation. What was interesting about our conversation was her story about how she ended up in Indiana. She and her husband were living in California for many years. He was originally from a small town in Indiana called Carmel. They have two small children and were thinking in 5-10 years they would move to Indiana. He worked for a company for several years and then it got bought out by a bigger company. He was the last of the original group to be let go. There he was jobless with a family to support. Within just a few days, a rival firm contacted him and asked him if he wanted a job with them. The caveat was he would have to move to Indiana- in the same area where he was from. The company didn't know that he was from that area. That was GOD! So there 5-10 year plan became a few month plan. It was so neat to hear how God provided in their lives.
This morning I went to see Joy, my dietician here at the Mayo Clinic. It was awesome to see her and a couple of nurses who took care of me while I was being treated here. They all were excited about how well I am doing and got a kick out of my crazy hair. They are so used to seeing us patients bald, that it's a surprise for them to see us come back and visit with a full head of hair. I was thrilled to hear all the dietary restrictions have been lifted. I can eat like a normal person now!!! Now if only I hadn't developed that nut intolerance. Nuts were one of my most favorite things to eat. Now I open the jar of peanut butter and just smell it lamenting over the fact I cannot eat it for fear of becoming extremely nauseous. I already had my bone density test this morning and now am waiting for my chest CT scan. I will follow that with pulmonary function tests and then see the lung doctor. Four appointments today only. The busy day is tomorrow when I have eight appointments.
This morning was a little crazy trying to manage all my luggage at the airport where I was picking up my car rental. I was unable to secure the vehicle a day early when I was changing all my reservations due to the extra clinic day. My only option was to spend the night in Minneapolis last night and go back to the airport to get the car this morning. I was very blessed with this whole ordeal. First of all, I needed a cart to haul all my luggage. (Yes I know I overpacked) When I attempted to get inside the airport to get the cart, I started dropping bags. Some nice man helped me out. I went to grab the cart, but it was a return area only so I couldn't pay for one there. I had no alternative but to just push my bags. It was crazy, but I did it. I went up to Alamo and checked in for me car. She said she would have to charge me for an extra day because I wasn't supposed to pick it up till 3:00 pm. Then she said, "Nevermind, it isn't charging you." She asked me if I wanted to upgrade for an additional $37. I said, "no thank you." She then offered to walk me to my car and help with luggage. She even loaded it into the trunk for me. She let me pick my car and said she was upgrading me for free! I still picked a basic car, but that SUV looked super cool! It was wonderful to have people care and assist me.
Picture this, me curled up on a seat waiting for the last appointment they added on for me, trying not to vomit. At the end of my visit with my lung doctor I started to feel nauseous. It wasn't long before the uncomfortableness overwhelmed me. I at least made it to the restroom before I emptied my stomach. At least I thought I did. After the fifth appointment I headed to the hotel to check-in. I think I got to my second stop light before I opened the door and violently threw up all over the road. I can't imagine what the people around me thought. I had to stop at least one more time before I got to the hotel. I wanted to weep. This brings back memories of how sick I was last year. I don't want to remember. The appointment with the lung Doctor did not go as well as I had hoped. While my lungs have improved since I had pneumonia in March, they are still affected. He said it is possible I have narrowing airways. It could be GVH or it could be from the RSV. He thinks I need another chest CT in six months. Tonight I have to sleep with a machine that will monitor my oxygen and heart rate all night. Another concern is the swelling in my feet I have been experiencing the last two weeks. The first time I noticed it was when we went to the cabin. Since then it has increasingly gotten worse. My feet and ankles swell up like fat sausages. The doctor said the radiation and chemo could have affected my heart, but he doesn't think so.
Friday the 13th and it's supposed to be a full moon tonight. I'm not superstitious so I don't think so much about that, but it's kinda funny we are here on this day. So far I have had blood tests, chest x-ray, chest CT, my baby immunizations, my 10th or 11th bone marrow biopsy ( I have lost count) and now am waiting for a head CT. They are checking my jaw where I had osteomyelitis. Recently I was experiencing pain again so figured they may as well test me for that while I am here. I have had two pokes for the IV (only one worked) one poke for multiple blood tests, five shots in my arms, and had to provide a UA. (at least it wasn't observed!) Goodness. I have all kinds of bandaids on me.
Mom finally arrived about 10:15 p.m. last night. The poor woman had several hours of layover and then they lost her suitcase with all of her clean clothes and the gifts she bought. She had a great attitude for sure.
Ailynn is crawling now at six months and I haven't seen her do it except on video. I can't wait till she crawls to me. Patrick was telling me about visiting them the other night and Ailynn not liking it when he put her down, but Ollie not liking it when he held Ailynn. Guess we will have to pick a child and then trade off so no one feels jealous.
I am excited yet a bit nervous about seeing Dr. Hogan this afternoon. Will he release me for work?
We got to the clinic about 0615 today. I started with donating many tubes of blood to the technicians who would determine the values of various tests. Then we went up for my bone marrow biopsy, followed by my chest CT, immunizations, chest x-ray, pharmacist visit, head CT, nurse case manager, the doctor, x-rays of my feet, and more blood tests. I think that's everything? Ended up being 15 appointments in two days. I am tired.
I was greeted with a sign Dr. Hogan and staff made me- a congratulations to making it one year. I was so excited to receive it. Dr. Hogan is overall pleased since I am still alive, but now I have more uncertain symptoms that are concerning. My RA tests were normal, but it is possible I still have Rheumatoid Arthritis or another type of arthritis. I have joint pain- specifically in my knees and elbows along with muscle soreness. My feet are grossly swollen too. It could be caused from GVH- the standard blame for everything. Besides that, he is concerned about my lung capacity. Now I have to get pulmonary function tests every month for three months. I also have to see a rheumatologist. I have to go back on Prednisone. I continue all my medications, but some are reduced which is good.
The biggest and hardest part is that he will not release me for work. I have too many issues and he said I would be in danger. He said he would never forgive himself of I were injured on the job and he had released me. I told myself I would be fine with his decision, but it stung like a bee. I had to take some deep breaths to stop from crying. I could tell he felt bad, but he knew he made the right decision. Bee stings SUCK!
Happy first anniversary French baby! Thank you Jesus that I am alive. My friends and family say I am defined by more than my job. They are right. God has mighty plans for me. I trust him for what is to come. We have waited for this day and here it is. Thank you, Jesus. Leuk is dead.
Three hours from home and I am fidgeting and uncomfortable. I am not very big, but I feel huge as I try to exit the row from the window seat. Normally I don't even get out of my seat, but I just couldn't sit anymore. Even just five minutes of standing was better than being stuck in this tiny seat. Sleep alludes me and my concentration for reading is absent. Tonight I can sleep in my own bed. My dogs, especially Ringo ,will be happy to see me and relieved I wasn't gone so long this time. They get nervous when they see the suitcases.
In my fatigued state between sleep and semi-wakefulness, I found myself audibly talking to myself in encouragement. I try focusing on the positive news I got and make the harsh reality turn optimistic. I will have the summer to be flexible and spend with my family at the cabin or hiking. I can babysit the girls anytime Meghan needs me to. I can see my parents and Granny more often. I can learn to cook new foods with the time I have on my hands. I can work on getting a substance abuse support group going in our church if the staff is open to it. I will not lie down and wallow in the pity of self despair even though here are times when I feel like crying at the curve ball life has thrown. There are SO many who have it MUCH worse than me. So many!!! I am alive and fairly healthy. That is grace, God's grace.
I am thankful my mom was able to share this part of my journey with me. She is always there for me. When we left Indiana in 1983, we shed many tears. We cried together for miles because we were leaving the many people we loved. We had to adapt to a new state, new friends, and a new way of life. In the same way, we have to adapt to a new way of living when things don't go as planned, health wise. The old becomes a memory we hold dear in our hearts. We miss how it was, but because we trust our Lord, we can look forward to that new adventure. It may not be the same, but it can be just as good. In the same way I went back and visited my childhood home and childhood friends, I can re-visit my old self on my good days, when I feel healthy and normal. Life is not over, it's just different. Different doesn't have to mean bad. Courage comes from accepting the differences and letting go of what used to be to accept what is happening today. It doesn't mean we have to like our circumstances, but we must let go. We can hold on to the dear memories, but never should we be filled with bitterness of what we lost. No one wants to be around someone who always focuses on the bad things. People want to be inspired by our content with our changed circumstances.
Lord, today I come to you to repent. I have focused so much energy these past 19 months trying to get better so I could go back to work. You know how much I loved my job. My desire to return to it inspired me to exercise regularly and gain strength. I gave it my all. I trusted you for complete healing. Yet here I am with new symptoms that are concerning. I am told certain parts of my body have been damaged. No one can tell me if the damage is temporary or permanent. I cry out to you to fix me. But two weeks before my Mayo appointment my symptoms increased rather than improved. Sometimes I have to accept help to get out of a chair. My pride for independence is fading. Maybe that's your plan. I thought I still had dependence on you, but maybe my narrow focus made me think more about what "I" wanted than what you wanted for me. I will not grow bitter for what I have lost. To the end of my days I will cry out to you in gratitude. For you have given me the greatest gift of all, salvation. Salvation outweighs how many miles I can hike and how well I can shoot a gun. My physical abilities do not define me. My innate spiritual thoughts and eagerness to follow you do. Help ME become who YOU desire me to be. Please show me and direct me on this new path. Help me not to be selfish, but to share my soul with others who need you. Please let me honor you however you see fit. I love you, Jesus, and I thank you for YOUR love. Help me share this story to bless others. Thank you, Jesus. And please give Logan a hug from his momma and tell him he gives me courage everyday.
What a beautiful, sunny, and hot day in Wasilla. Amazing weather. We went for a hike with Meghan and the girls at Reflection Lake. I carried each girl for a time and was happy I could. At one point I let them all roam ahead of me and I just gazed at them in wonder. This is my family and I am here with them! I never cease to be happy and relieved that I am alive. I had to fight the tears because I didn't want to concern my family, but there really were tears of joy and gratitude.
Patrick deep fried some pike for us and it was wonderful. I made homemade potato salad and a green salad. We shared our meal with Meghan, the girls, and our neighbor Sarah and her girls. It's so nice to visit with people.
Tomorrow I have plans to do some organizing around here and work on my novel I decided to wrote. Yes, I am finally going to wrote a book about Logan and our family's experiences. People keep telling me too and since I won't be working, it seems like a good time to find a new project.
It's 7:30 pm and the girls and Kirk just left. I tried napping with Ailynn earlier, but I couldn't sleep. At least I rested with my legs elevated. I am so tired. The last couple of hours I found myself holding back participation and just sleepily observing. I feel as if this happens a lot and it makes me sad that I am not fully engaged with my family. I just am bone weary and can't seem to function like everyone else. I wonder if I will have more energy when my new thyroid medication comes. My TSH level was six times the normal limit which could explain the extreme fatigue. I just hope my family realizes I DO want to be a part of these family get togethers and I wish I had the energy to fully engage.
What on earth is wrong with me? I feel like I'm going to burst into tears at any moment. I have been awake since 0400. I made breakfast and lunch for Patrick and I am planning what I will make for dinner. I need to grocery shop, visit Granny, and go see the girls and get another walk in. I look at my ugly yard that was torn up two years ago when we replaced the septic and I am sad I can do nothing to make it look good. I am not allowed to mow, rake, plant flowers, nothing! I can't dust or vacuum my house. I am home and not earning an income yet I seem so lazy because I am so limited. I feel worthless today. I walk around all day looking for something that I can do that will not hurt me.
"God's plans will always be greater and more beautiful than all your disappointments."
What are your plans for me, God?
I tried to occupy myself by visiting with Meghan and the girls. We went for a walk and then I took Ollie to the grocery store and to Granny's before bringing her home with me. I got more unfortunate news today so it felt like a dark cloud was hanging over me despite the sunshine the girls bring me. There is no rhermatologist in Alaska that can get me in anytime soon. I was told it's an 8-10 month wait. Mayo said, " no way, you need to come back here within a month." Besides that, my CT results of my jaw is not good. The radiologist says it's a severe case and mentioned possible surgery. Again, more testing has to be done. Hopefully I can fly there in the next week while I am still covered under my health insurance plan. I have excellent insurance, but it will end with my job. Some days I feel discouraged.
Another sleepless night for me. Besides the concern and worry I have about my health and our finances due to my illness, I believe the Prednisone is messing with my sleep patterns. I fell asleep from probably 9-10 then was awake until about 0300 and slept just another hour. My body is fatigued.
Just when I think things are so grim, I get a calls and messages from people who are concerned and want to help out in some way. I am encouraged. I got super good news this afternoon. There is NO sign of Leuk. Now I didn't expect anything different, but it's always good to see that kind of confirmation in print.
I spent the afternoon in Anchorage. I went to Costco to get a bunch of things we needed and found myself wandering around for a couple of hours. It's been years since I haven't been on a set schedule and just had time to wander. It felt fantastic not to have the pressure of needing to be some place. I did get super tired though and was more than ready to get out of there. I took Patrick a piece of pizza for lunch and I ate one myself. I actually enjoyed it. Maybe my taste buds are completely back.
Last night my dear darling husband did some mowing and weed eating in my ugly yard. It looks so much better. I coudn't go outside while he was doing it for fear of floating fungus getting in my lungs. I cleaned up the kitchen and did as much inside as I could. About 9:00 pm I took a walk. It finally warmed up in the evening after a chilly day. I walked about 2 miles listening to praise music. Finally I felt like I was getting out of my funk and overcoming the disappointment of all the additional problems I have developed post-transplant. I heard the song "Overcomer" twice yesterday and it made me realize I AM still in this fight and I WILL overcome it all.
Today Meghan and I will be meeting at a park in Wasilla. We are getting Ailynn's six month pictures done by a friend of Ingrid's. It's another fundraiser to help her family out with expenses while she is being treated for cancer. It's a win-win situation; her family benefits financially and we finally get Ailynn's pictures done! Olivienne had a lot more pictures taken by this age. The poor second child gets a little left out. I love them both and can't wait to see them today.
Despite the rainy and chilly weather, we had a pretty good photo shoot. Ailynn did smile a lot. We tried to get pictures of Ollie too, but she really doesn't like her picture taken. She can be quite stubborn. I wonder where she gets that from.... After the pictures were taken we came back to my house. We enjoyed a nice lunch and played with the girls. I then told Meghan she could stay as long as she wanted, but I had to go take a nap. I get so tired.
The swelling in my feet is decreasing, but my ankles are still swollen. Unfortunately I have a new symptom. The skin on the top of my feet hurts to even touch it. Sometimes it also looks red. I'm pretty concerned that this is GVHD which would not be a good thing. I have multiple appointments scheduled for June 7th. I fly out on the 6th and will return the evening of the 9th. I figured I better add a few days because they are notorius for adding additional appointments on as things come up.
Today seems to be a good day to share these lyrics by Casting Crowns:
"You Are The Only One"
One more family is torn apart
One more orphan out in the cold
One more fear that takes control
One more tangled in the same old lies
One more shackled to the same old highs
One more scared of what tomorrow brings
And one more chasing yesterday
Lord, let Your kingdom come
Who can right every wrong
You are the only One
Who can calm every storm
You are the only One
You alone are Father, Savior, Spirit, Healer, Redeemer
Lord of all
You are the only One
One more skeptic to believe
One more prisoner has been set free
One more longs to be Your hands and feet
One more standing for the least of these
One more praying in the morning light
One more shining in the darkest night
One more life worth fighting for
No greater love worth dying for
Lord, let Your kingdom come
Lord, let Your will be done
I want to know You more
I want to make You known
I want this world to see
That You're alive in me
Jesus, You're the only One
(Father, Savior, Spirit)
You are the only One
(Redeemer, Lord of all)
You are the only One
So tecnically summer starts June 20th I believe, but here in Alaska we consider summer to start around the middle of May. It was a beautiful May filled with sunshine and warmth. Yesterday it was super beautiful and I put in over 9 miles! I walked Ringo in the neighborhood first, then started working in the yard on a few projects. I saw Kelsey all geared up in her hiking clothes and hinted around that I wanted to hike too. She invited me to join her at Hatcher Pass. We had a great time and hiked about five miles. After we were done I had to run an errand. I barely made it home before I plopped on the bed. I woke up after about 50 minutes and made dinner. I was tired!!! I actually slept last night and feel good today. I have so much bookkeeping and things to work on that I really wish it would just rain so I wouldn't have an excuse to play outside. I do need to water all my new grass which is defnitely a job in itself.
On days like yesterday I wonder why my doctors think I need to have limitations. I think I am doing exceptionally well just one year post-transplant. I am THRILLED that things are going so well. I sometimes have to pinch myself to believe I am still here and not in pain. God is so good.
I finally got my car rental for Mayo. I leave Monday and the prices for a car rental are just astronomical.I just had to do it. This is just too much. I hope and pray I don't have to go back for at least six months.
Today was a pretty good day, but I did find myself just wandering around wondering what project I should do. How many times have you wished you had more time on your hands for projects? Well I sure did and now I'm at a loss of what to do. Years ago when I stayed home with my kids, I found myself always busy organizing, cleaning, cooking, etc. Now I'm so limited on what I can do I find myself just walking around. I have a ton of dusting to do but can't do it. My yard needs mowed, but I can't do it. I want to work on a budget in Excel, but I can't figure out how to input the information right. Meghan suggests I look at a You Tube video on how to do it which is a good idea.
I went on a short walk with my friend Kelly which was really nice. I watered all the new grass and took a nap. Tonight I had a retirement party to go to for someone I used to work with at the prison, Kathy. I got to see many old friends from work and it was great to see everyone, but I was about in tears by the time I left because I don't work there anymore and I'm in limbo. I felt pretty sad driving home, but when I pulled up to the house I was amazed to see planter after planter of flowers waiting for me. My brother and sister-in-law just loaded Patrick up with flowers to brighten my day. Their timing was amazing. I am thankful for family and friends.
Today, June 2, 2016 marks the day I have officially separated from State of Alaska/DOC employment. I was a Probation/Parole Officer for almost eight years. I loved my job so much. I couldn't wait to get back to it after transplant. But when I got pneumonia in March, it damaged my lungs and I started having post-transplant complications. I was just at Mayo for my one year post-transplant check-up on ay 13th. I leave Monday for more testing at Mayo. My doctors will not release me for work at this time so I had to reluctantly resign. It has been a difficult time for me, but I had no options since I am not medically cleared.
It sunk in today when I ran into someone I know who hadn't heard I no longer have a job. To clinch the pain even more, I went through security at the Court House like a commoner, rather than a law enforcement officer. No more showing my badge and avoiding getting searched. The wicked truth is out; I am unemployed. I'm trying to encourage myself and remind myself how free I am right now. Granny and I were supposed to spend the day together, but she is sick so I can't be around her. Ollie still has a runny nose so I can't be around her. I was invited to go hiking with Holly and Sharmin, but they were climbing Lazy Mountain and I'm not ready for that. I am being a big cry baby like a two year old having a fit. It's all on the inside though- on the outside I smile and show how brave I am. (HA) Seriously, despite the suckiness of it all, God is good.....
Tonight I went to the grand opening of Teen Challenge in Wasilla. I met a recovering addict who is part of a group "Fiend to Clean". I'm so excited about the community coming together to help people with addictions. I was asked to be part of the Thrive Coalition and I'm happy to serve this community in this way. I have so many projects and dreams! I must start scheduling time to fit it all in. No more wandering around looking for things to do. I also got a call from Be the Match today and they asked me if I was interested in training to be a peer counselor. Of course I said yes and will begin that soon.
Last night I kept Ollie overnight by myself for the first time. I have always had Patrick here to stay up late with her. I was a bit nervous and I know Meghan and Patrick were worried that I couldn't handle her. Part of my heart hurts because they doubt my ability to hang in there when she gets tough, but the other part of me knows they are right. I do have limits and taking care of a two year old is exhausting. I am pleased to say the two of us managed just fine. Until bedtime that is..... Ollie went to bed well at first despite her protestation that she wasn't tired. She asked me to lie down with her when usually she prefers sleeping alone. She laid there and tossed and turned until finally she decided I could go to my own room. I had just dozed off to sleep when I heard loud crying. I went in there and she was pitifully saying, "I miss my mommy and daddy, Ailynn and Kahlua (her dog) and I want to go home- I don't want to stay with you." I felt pretty sad at that time and tried to calm her down. After a bit she asked to go in my bed with me. I thought everything was going better and then it started all over again. I finally said, "Okay, I will take you home." Then she said, "no I want to stay, but I'm not going to sleep." I told her just to rest her eyes then and think about kitties and doggies. She wanted to know what else she should think about. In about five minutes she let me know she was still thinking about kitties and doggies and did the same an hour later. I was so tired! I rolled away from her and pretended I was asleep. She started rubbing my back like her momma does to her. It was so cute and funny and I had to work hard not to laugh. We talked about what she wanted for breakfast. She decided on cheesy eggs, blueberry pancakes, and bacon. She said, "Do you even have bacon?" Then she wanted to talk about my upcoming trip to Minnesota. She was disappointed that she couldn't go. I told her she was there with me last year. She wanted to know what color the pool was that we got her, what Papa was doing when she was in the pool, what color the outside of the house was, the color of the kitchen, furniture, dining room table chairs, bedrooms, curtains, and furnace. Finally she wanted to go back to her bed and went to sleep. Whew, I did it!
Yesterday Holly and I went up to Hatcher Pass and hiked and today Meghan and I took the girls to the Experimental Farm and walked around. It's just been so gorgeous here and I love being out in the sunshine and feeling so good.
My plane leaves at 0700 tomorrow so I will be driving into Anchorage at 0430. It will definitely be a long day. I am very tired and still have lots to do. I keep getting interrupted which is just a tad bit annoying.
I made it to Rochester about 10:30 pm MN time. I stopped in Minneapolis and met up with my friend Faith. It was great seeing her as I didn't get to see her on my last trip down. My flights were uneventful.
For those who know me well, you know that I am a bit of a control freak. Being directed by my doctors and having to follow their direction the past 19 months has been hard on this Type A personality woman. I am not like my dear husband who can be impulsive and go with the flow no matter what. While he is enjoying the journey and beauty around him, I am often found paddling upstream and fighting the current. Opposites certainly do attract. I don't take time to look around and enjoy the beauty around me. Instead, I am goal-oriented and mission focused. Now this can be a good thing at times and I feel it has served me well in many situations. I don't feel I have many talents, but I am organized and can coordinate logistics well. I have many family members who are artistic, yet I can't draw a stick figure well. My mom has a great singing voice and I struggle to remain in tune. But I can organize!
So I have been thinking that no one should have to plan my funeral for me. I could die tomorrow or in fifty years. I know what I want and I already have the songs, the singers, and the preacher picked out. (No, not my dad) I want to organize this myself, so when I got a letter in the mail a few weeks ago from a local funeral home, I was excited! I filled it out and checked the boxes that showed my intent to pre-plan my service. I mailed it right away. It's been over three weeks and no one contacted me. Good grief, don't they want to help me organize my own funeral?! A few days ago I was enjoying some time on the deck and was reading the paper. lo' and behold, there was another funeral home advertising the same service of a pre-planned funeral. I could barely contain my glee as I reached for the phone. Imagine my disappointment when the person who answered the phone told me no one was available to discuss my funeral with me and someone would call me back. No one called! What if I die tomorrow? Who is going to follow my wishes exactly the way I want? I must be in control! I want to still direct everyone even after I take my last breath on earth. I know I will be able to hear Patrick groaning as he says, "You have to be kidding me! She even planned her funeral? Does she not trust me with anything?" Dang right I am planning my funeral! I told my cousin Holly that when its time to pass the microphone around so people can share stories about me, I want her to let everyone know that I planned the event. I also shared with Meghan who protested the whole idea of a service. She just wants to plant me in a tree after we saw something on Facebook. I am all about being a tree, but I still want a service. Why the heck is she not wanting me to have one last party!? Yes, this is why I need to find someone who wants to help me. Now I will let you in on a secret- one requirement to get into my final party is you have to wear either green or a Wonder Woman outfit. No admittance unless you do. If you know a funeral director, have them call me.
Overall my appointments went well today. My lungs have improved which is wonderful. The swelling is gone in my feet so seems the Prednisone worked. I hoped Dr. Hogan would take me off it, but he said no, but we can slowly taper. He wants to add another medication that could potentially cause some eye issues which worries me. I already get corneal abrasions and I am diabetic. The last thing I need is eye damage. I have to have a thorough exam before starting the medicine. Of course I cant get an appointment at Mayo till August, so we will have to schedule it in Alaska. I was thrilled to hear I don't have to come back for six months. I saw the rheumatologist this afternoon. He sat in front of the computer analyzing all the data on me for about ten minutes. I didn't know what to do with myself and I tried to just sit there and not fidget. I kept looking longingly at the magazine rack. Finally he took a deep breath and said, "Mrs. Marre, I don't know what is wrong with you." Really? My second trip in a month and this is what I hear? He went on to say he's convinced I don't have rheumatoid arthritis which is a relief. He said many get a stem cell transplant to cure it and it shouldn't ever cause it. He ordered another vial of blood which brought me up to eight tubes today. He thinks it's GVHD which is what Dr. Hogan suspected. The plan is to continue on steroids but taper off by decreasing one milligram every two weeks and add another medication that I would take twice a day. Dr. Hogan said if the swelling happened again it might be harder to control it next time. He added one appointment onto my schedule tomorrow. I will see the endocrinologist about my osteopenia and see if yet another medication should be ordered. I sure hope not.
I changed my flight and will leave tomorrow afternoon instead of Thursday evening. I am homesick and I have a lot to do at home. Speaking of which, as long as I wear an industrial mask, I can mow, vacuum, and dust my house! No more begging someone to do it for me. I am very excited. I was going to visit either Amy or Lisa, but it's a seven hour drive to see Amy and a four hour drive to see Lisa. I just don't have the energy. My results from last month's bone marrow biopsy show I am still 100% donor. Carrie said the longer I go without a reoccurrence the better chance I have to survive. She told me to appreciate each day which I do. I also believe I have been completely healed.
I am home! It's so good to be home. Patrick and I barely saw each other last week so seeing him tonight felt really good. He was overjoyed to see me which made me feel loved and appreciated. Ringo cried like a baby, I was only gone two nights, but to him it must have been forever.
I had an endocrinology appointment this morning. We discussed my bone loss of 8% in one year. It's very concerning. Because I am on Prednisone again, I will lose even more bone. I have to be careful not to get injured or fall. The doctor decided it's best to go on a preventative medication. However, that also has side effects. I am so done with pills and being sick.
I'm heading to my favorite place. Patrick is already down there fishing. He had a friend fly up to celebrate his 50th birthday with him. Yes, my husband of almost 30 years turns 50 tomorrow. I have known him since he was 18. Time sure does fly when you are having fun or even when you aren't having fun. I can't wait to celebrate with him tomorrow. Of course he will be on the river, but I made him promise to be back for his birthday dinner at 7:00.
We had a wonderful long weekend at the cabin celebrating Patrick's 50th birthday. I threw him a big surprise party. He figured I had something up my sleeve, but he did not know the extent of it. We had so much fun and he got to celebrate with two old friends from Colorado and many Alaskan friends. Casey, Kelsey, Meghan, Kirk, and the girls all came down and he enjoyed family time too. He got to do lots of fishing which made him very happy. I hope that he will never forget the feeling of happiness he had on his birthday and I hope I made him feel special and appreciated. He is such an amazing guy and I am so blessed to have him. In less than two weeks we will be having our 30th anniversary party and renewal of vows. More fun to be had and memories to be made. I am so thankful I am here to celebrate with my husband, family, and friends.
Yesterday I got to visit with two of my dearest long-time friends, Amy and Dorothy. Amy is up here for her son's wedding which is this weekend. Four years ago she moved to Minnesota. She, Dorothy, and I named ourselves the Three Muskateers. It hasn't been the same since Amy left and we are thankful for the opportunity to be together again. Last year we all met up after my transplant in Minnesota. I was pretty sick then so it's nice to be with them when I feel better.
My friend Ingrid posted on FB that her doctors told her she only has three to five years to live. I really struggle with a lot of emotions after reading this. My first is denial because I don't believe in statistics. I know that God is much more knowledgeable about when our life on earth is to come to an end. I believe in miracles and healing. Secondly, I struggle with guilt beause I am alive and doing well and she's not expected to surivive. Then there's Logan who didn't survive as well as many other friends who fought just as hard as me who passed away. Why am I the chosen one? I am so thankful that I am here and doing well, but sometimes I wonder why me and not them. What does God have planned for me? I am here and ready to serve and do his wll.
I struggle with what to say to my friend Ingrid. Thankfully she is a strong Christian woman, yet she is struggling with what this means for her family. She still has teenagers at home who need their momma. How do I encourage her to remain strong, but not act like what she has is no big deal? You bet it's a big deal! She has a terrible cancer and has been given a death sentence. How do I comfort her? Even though I have gone through treatment and a transplant and faced death, I am at a loss of how to help her.
Yesterday was my parents' 53rd wedding anniversary. I am so thankful and grateful to have parents who truly love each other and who have modeled what a Christian marriage looks like to my brother and me. Both Mark and I have been married to our spouses for a very long time. Mom and Dad taught us well. We have all gone through difficult times, but because of their willingness to work through problems, we have learned to do the same. They went out on a Kenail Fjords tour in Seward and I hope they had a good time and didn't answer phone calls from people who needed something from them. They deserve a good rest and time to focus just on each other.
Wendy Hale and I went to the Garden of Reflection yesterday and planted a gazillion flowers that Mark and Sharmin donated from MidValley Garden and Greenhouse. Casey came to help as did Wendy's daughter, Kelly, and several Mormon missionaries. The garden looks so much better and Wendy and I are thankful for the help. I haven't worked on it in several years which I feel bad about. It's time to get back in there and help. I also did four loads of laundry and cleaned the house, went to the dentist with a two year old tagging along and made dinner. I slept pretty good last night due to my overdoing it a bit. I didn't feel bad, just probably stretched myself a little thin. I am worried about getting sick because Patrick has symptoms of a cold again. I do not want to go back into the hospital. There is some mix up with my anti-fungal medication and I am out. I am not protected against mold right now so if I go into the woods or am around any wet mushroom/plants, I must wear my mask. I hate Bane!!!!!!
Today I am helping my friend Amy get things for her son's wedding on Saturday. This afternoon I am helping Pamela (from church) box up things for her new residence. It will be another busy day for me. I have no idea how I did so much and worked full time. I can barely keep up with myself. I have not been able to devote any time at all on my book which disappoints me. I really want to get that written. I guess this fall and winter will mean more time to sit in front of a computer and work.
Oh my gosh it's a hot one out there today. I saw a post of FB that I wrote last year while in MN and I was talking about how everyone was so hot and I was outside with a blanket. I was so skinny and sickly after transplant so I was pretty cold-blooded. Not the case this year! I am sweating like a pig in the sweltering heat.
Speaking of FB, there was a post by a family member that mocked God's healing and gave all credit to science. I couldn't let that go without stating my thoughts on the matter. I don't believe I deserve healing more than anyone else, but I sure receive that healing. Yes, modern medicine played a huge part in it, but there were hundreds if not thousands of people praying. I know there are sometimes thousands of people praying for others too and they don't get healed. I can't explain why some do and some don't. But God has a plan. We may not always understand, but we must trust him. The thought of ever living apart from him terrifies me. He is a good, good father. All I can do is share my story and beliefs. I can lead the horse to the water, but I can't force the horse to drink.
I have been lying in bed for a couple of hours. I'm not sure why I didn't just get up and do my walk, water my grass, and start breakfast. I am being totally lazy. Today we have Kyle's wedding to go to and I have a lot to fit in. Yesterday was very busy as I went from one activity to another. I was so tired last night, but happy I could do it all.
Another busy day and I am so exhausted. I helped set up for the wedding and enjoyed the festivities. I felt bad that I left earlier than I expected to, but I was so tired. I needed a nap. I am just not 100%, but am sure trying to be. Next week will likely be just as busy. I still have logistics to figure out for our 30th anniversary party. I want to make our event special. I sure hope it doesn't rain since we will be outside. We are not just celebrating 30 years of marriage, we are celebrating that we still have each other here on earth. I sure love my husband and family.
Happy Father's Day to my dad, father-in-law, husband, son-in-law, friends and family. What a day to celebrate you fathers who take good care of your children. I am thankful my dad raised me knowing who my Heavenly Father is and taught me where my heart and loyalties should lie. I am thankful he modeled such a good example of being a husband and father that I found a man so similar as him. My husband respects me and he loves me. His heart is not as on fire for God as my dad's is, but he's getting there. He struggled a lot after we lost Logan, but I sense the change in him and notice the softening of his heart,I know he is a believer and I am thankful for that. He has modeled the principles of a godly marriage; respect and love. We couldn't wait to be parents and were overjoyed when we found out I was pregnant three months after our marriage. Logan would kick me so hard and wiggle around when he heard his daddy's voice while I was pregnant with him. He was sure a daddy's boy as were all three of our children. I love the way he parents; he is so patient and kind. That's how my dad was too. I remember my dad spending hours with me in our backyard swimming pool. He patiently demonstrated an aerial backwards summersault over and over. I never could do one because fear held me back.
Today Patrick and Casey are king fishing with our friend Roy. I am happy they are out there having fun. I went to visit my parents and give dad his present. I am thankful I still have my parents. So many of our friends have lost theirs and its so sad. Today especially I remember my friend Diane and Tim Burget as they lost their son, David, 18 years ago on this day. David was a friend of Logan's and he had Ewing Sarcoma. We met at Ronald McDonald House. My heart hurts for them and their daughter Jennifer.
Yesterday was an exhausting day for me. I just didn't have much energy. I made myself walk with my friend Debbie around Palmer and came home and took a nap. I was invited to go on a summer solstice hike at Hatcher Pass leaving at 9:30 pm! I decided I didn't want to say no and be a wimp, so I went. Before I left I weeded one of my flower gardens- the one Casey has been redesigning it with big rocks. Ringo and I drove to Hatcher Pass to meet the ladies up there. There were many ladies, all from Church on the Rock, and they were ready to hike. I met one lady named Michelle and we discovered our pace matched well. We were the leaders of the pack which was really cool. Ringo was the hit of the party because he was so well mannered and stayed right beside me the whole way. I felt accomplished since I am just 13 months post-transplant. I didn't get home until 0100.
Today I felt fatigued again, but watered my grass in between errands, ran out to Big Lake for an errand, went to the chiropractor and got a massage, attended my first "Thrive" meeting which was great, prepared dinner for Patrick, went to a United Way meeting and distributed all that grant money to various organizations. I would say it's been a successful day. However, I am beat. I am trying to get all the stuff together for the cabin since we are leaving tomorrow. We are three days away from our vow renewal. I am sure we are leaving something out, but since it is a casual affair I guess it is okay. I think I need to rest, but there doesn't seem to be any time for that. I have committed myself to so many upcoming meetings. I really need a couple days just to do paperwork.
This Friday is Logan's birthday. June 24, 1987 was a perfect day to give birth to our beautiful first-born son. I was in hard labor for 24 hours and was exhausted. But the moment he made his appearance all pain and exhaustion went away. How proud we were to be parents. I was barely 20 and Patrick had turned 21 just 13 days before Logan's birth. I remember Patrick going out and buying Logan a set of rattles as a welcome to the world gift. I remember thinking how sweet that was and knew right then that Patrick would be a caring father. He never let the kids or me down in that area. He has always been an amazing father to our children and I am so grateful.
Logan was a happy and sweet child. He was well mannered, easy going, and very compassionate. He loved to fish, bike, play soccer, basketball, baseball, fish, do martial arts, hike, and spend time with his family. He just enjoyed pretty much everything. He was a caring big brother and made an effort to look out for his younger siblings. He fought such a hard battle and would have won it if he hadn't gotten a fungal infection. I spent years blaming myself for not protecting him enough. I would still take his place if I could. I would let him live and have me die if only I had the power to do so. The world lost a beautiful soul, but Heaven gained a beautiful soul. I know that ultimately we will all die and if we know Jesus, we will have the opportunity to live eternally in Heaven. I know that Logan must be having so much fun with his friends from RMH, Chris and David, plus the many others he knew and loved. Then of course there are his family members including his cousin Matt who recently joined him. I know Logan is having a good time, but it doesn't take away our pain and feeling of loss when his birthday is upon us. I convinced Patrick to take my dad, Meghan, and Kirk out halibut fishing to celebrate Logan. Logan loved to halibut fish and Homer was his favorite place. Patrick expressed guilt about going on Logan's special day, but I told him there was no better way to honor our son then to catch a big halibut in his memory. We love you, Logan. Happy 29th birthday dear son.
Logan's special day was not forgotten. We all inwardly struggled with our pain, but we didn't share how we felt with one another. We have shared of sadness for years and find it just intensifies the pain, so we choose to silently grieve. Is that healthy? I don't know, but we do it anyway. We used to let off balloons and have a party complete with cake. It ripped us up inside and we find this way is easier. Regardless of what we do or don't do, our boy is missed by us and we love him so much. He was present in our thoughts, hearts, and actions all weekend long. We celebrated our 30th anniversary with our children, parents, grandchildren, and friends. Logan was there with us. I know how happy he must have been to see us all together.
We had a wonderful turn-out for our celebration. We decided to renew our vows to commemorate this momentous occasion. Meghan insisted on buying me a special dress and I bought the girls matching ones. Thirty years ago my father officiated our marriage ceremony and my mother made our wedding cake. Yesterday Dad officiated our ceremony and Mom made our anniversary cake. It was a three-tiered cake, no less. My mother goes in for the kill. She does NOTHING simple at all. Dad was amazing as usual as he proudly stood before us and conducted the ceremony. Patrick wrote the most amazing vows to me. He went first unfortunately and there was NO way I could top what he had to say. It was funny because 30 years ago I was 19 years old and nervous as heck. I can't even remember all that happened at my wedding because I was so filled with anxiety about everything going perfectly. Yesterday I treasured every single moment and wasn't nervous at all. Okay, maybe a little. I was wearing high heels after all! I was escorted by my handsome son, Casey, and Meghan and Ollie were in front of me. So if I fell, I would have been caught. Seriously, the look on my husband's face as I walked towards him was priceless. Now a little bit of his enamored look MAY have been seeing Miss Ollie walk around that deck, but I suspect most of it was for me. When we stood facing each other and holding hands, the love he has for me just shined brightly in his eyes. He loved me so fiercely I could feel it in the depths of my soul. His eyes and his words spoke genuinely from his heart. I am one fortunately blessed woman to call this man mine.
Meghan and Kelsey and Meghan's sister-in-law, Kate, were the primary decorators. They created and designed a beautiful back-drop for our vow renewal. Kirk and Kate's husband, Kyle, hung a ton of paper lanterns. I had to apologize to them for assuming the girls would be better at it. These guys created an amazing deck! I had lots of assistance from many people. We had a lot of food afterwards and some people stayed up till about 0500. I do believe Kirk and Cody stayed up till 0700! I got up at 0800 and started cooking breakfast. I had a revolving platter of scrambled eggs and pancakes. Our guests staggered up at various hours from 0830 to 11:00. I think I made four pots of coffee. We had a great clean-up crew and things were back to normal in no time at all. We worked together as a family and got it done. Our dear, dear friends, Mike and Carol and their son, Cody joined us for the event and they were instrumental in assisting us for the clean-up. I used to have Cody in my daycare when he was very small! He has grown into a very nice young man. His parents were two of the key players in fundraising for us when Logan got sick and when I got sick. If it weren't for them, we may have been bankrupt both times. We are so thankful for their friendship.
I am grateful to be alive and surrounded by my family and friends. Thank you, Jesus, for giving me a second chance at life. Let me do a better job than I did my first 30 years of marriage. Let me love my husband better. Help me be a better mom, daughter, sister, grammie, wife, granddaughter, cousin, niece, and friend. Help me improve my attitude, devotion, drive, motivation, and inspiration. Help me be more like you, Jesus, then I will be able to become better at everything I do. Thank you for the gift of life and thank you for Logan's life. My heart WILL choose to say, "Blessed be your name. You give and take away, but still my heart will say, Blessed be the Name of the Lord."
Today is our actual 30th anniversary. We plan on having a quiet dinner at home tonight. We already did the big celebration so being at home is perfect.
Yesterday Ringo and I went hiking and then we went to play with the grandbabies. Ollie wanted me to pull her and Ailynn in the wagon so I managed to walk over seven miles yesterday all together. I was so tired when I got home that I crawled into bed and slept for a couple of hours. I was then up till 0100 this morning. I woke up when I heard Patrick making coffee about 0615 and felt bad I hadn't made his lunch. I was so lazy. I went back to bed and slept till 0830. It's almost noon and I haven't even showered! I have been paying bills and working on a budget so at least I can say I have accomplished something today. I need to get ready to go because I did tell Meghan I would come watch the girls while she packs up the house. They are getting ready to close on their house and everything must be out of there. It's a little overwhelming for them at the moment and babysitting is something I can do.
Oh what a wonderful day! I visited with Granny before going over to see Meghan and the girls. I showed Granny the pictures from our party so she could feel a part of it. She was going to come, but hasn't been feeling well. I had a great time with Meghan and the girls. I pulled them in the wagon again. I spotted many large rocks on the road and knew I had to have them. Granny instilled the love of rocks into me. I talked Meghan into riding in the car with me to gather some up. She would not allow me to lift a single one. I got strict orders from her not to unload them, but I will tomorrow because I am too anxious to wait for help. I couldn't hardly ask Patrick to help me tonight since we were celebrating our anniversary.
We had such a nice dinner. I put a lace tablecloth on our patio table. The sun was shining, the wine was fabulous, and he grilled the steaks to perfection. I sauteed the onions and mushrooms, sautéed scallops, and made a fabulous salad from the crops of my brother's greenhouse and our parent's garden. It was so much better than a meal in a restaurant. We sat there for hours just chatting. It certainly beat last year's anniversary when I was just a month post-transplant and so sick. This year Patrick walked in with 30 roses. I had forgotten I am allowed to be around fresh flowers now so I was very surprised and pleased. I think every year we have been married he's gotten me a rose for each year. Last year was an exception of course. It was a perfect night and I look forward to thirty more years with this spectacular man whom I am thrilled to call my husband.
Yesterday I watched the girls while Meghan donated blood. She has now reached three gallons of donation and I am so proud of her. She saw the need when Logan was sick and continues to follow through to help others who need transfusions. Goodness knows I had my share of transfusions. I enjoyed my time with the girls but they did wear me out. It doesn't take much to make this lady tired. After they left I went to another meeting for Thrive, the substance abuse coalition. I came home and mopped and dusted the upstairs and made dinner. After that I could hardly move so Patrick mowed despite my protesting I could do it. I was so exhausted.
Today Dorothy and I went on a hike at the Experimental Farm. We walked over five miles. We passed by a couple with a dog and started a conversation, I realized I knew the lady, Kathy, from years ago. Of course she didn't recognize me since I look so different. I reintroduced myself and she gave me a big hug and told me how happy she was to see me and exclaimed how great I looked. But I was more interested in her husband than talking about me. You see, I prayed for her husband Chris a lot. Four years ago he had a heart transplant! And here he was, walking around like nothing ever happened to him. I was amazed and we spent time rejoicing on the successful recovery for both of us. Kathy and Chris are strong believers too and we know who gets the credit for our survival.
Meghan and Kirk are packing up their home since they will be closing on it soon. I started crying tonight when I thought about them leaving state. Meghan is not only my daughter, but also my friend! We share everything and I am going to miss her. I am going to miss Kirk so much too. He always gives me a big hug when he sees me and says, " Hi mother-in-law". It sounds silly, but I love his playful attitude and obvious love for me. I am going to miss our granddaughters so so so much! I can't stand thinking about it. And I will also miss Kahlua, their dog. I am sad, but I am trying to be happy for them because I know they are excited about their upcoming adventure.
July already! Time sure does fly when one keeps as busy as I have kept myself. I just can't keep up with everything, but I sure am having a good time enjoying life. This morning I treated myself to a "double-punch" latte at Little Millers. It's been quite awhile since I have had an espresso. I have us on a budget and there aren't many coffees budgeted in, but today I really wanted one. It's a rainy day and what better way to spend the morning than drinking a delicious coffee while working on paperwork.
Machaela, the girl who made my coffee, was a recent bone marrow donor after registering at the Church on the Rock Bone Marrow Drive held in my honor. She shared a bit of her experience with me and told me it was pretty much a painless procedure and she has learned that the patient is doing well after transplant. How gracious of this young girl to save a life. She did so without question and I am grateful on behalf of that patient. My next plan of attack is writing an article about bone marrow donations from the perspective of a donor. I know a few people who have successfully donated marrow and I plan on interviewing them for this story. So if you readers know of anyone who has been a bone marrow donor, please have them contact me so I can include them in the story as well.
We must work together as not only community members and US Citizens, but as human beings who care about others no matter where we live. My cord blood came from a French baby which is amazing to me. We may be separated by physical distance, but really, we are all one. Let's be unified and help everyone we can. You CAN make a difference in someone's life. Take the time to reach out to someone lonely, make a meal for someone, offer a ride to a doctor's appointment, spend time with a senior, adopt an animal, donate blood, attend a fundraiser, or find a place to volunteer some time. There are many ways to serve others. By serving others, you are serving Christ.
We made it to the cabin. Another three day weekend for us and I am so excited. I love being down here because I can truly rest and relax. There is no pressure to get anything done. I get lots of walks in with the dogs which is nice. Usually I pack everything I need and get a little cocky about how well I remember everything. Tonight I'm not feeling so proud of myself as I realized I forgot two of my medications and will be going without them for three days.... Not cool, Marre, not cool. That's what happens when I am overconfident.
I have this thing with numbers. It may seem odd, but frequently I will glance at my phone and see the same numbers such as 3:33 or 4:44 or 2:22. I get such a kick out of it. When I logged onto this site it was 10:10. Now that is a number I don't like, because that's what time Logan died. It was 10:10 on a Saturday night. When I see that number on a Saturday, I really get sad. But other than that, the same numbers make me happy and I think of it as a fortunate thing. I don't believe in "luck" per say, but it makes me feel positive about things.
Tonight I learned that Renee is back in the hospital with complications from her AML. She is bleeding badly from her gums and is having lots of blood transfusions. She didn't want to ever return to the hospital and I don't blame her. I do hope she gets the treatment she needs and is cured. AML is a horrible leukemia. I saw a FB post my friend Carol wrote and it encouraged me. She will be approaching her two year anniversary in August I believe and is doing super well. She did not have a transplant, chemo took care of the leukemia which is great. Carol had many rough times during chemo and she was in the hospital for months. I don't know how she did it. She was so kind to me and visited me after she was released. I pray she remains leukemia free and I pray ReNe'e will be okay. I also learned today that a lady I know has a father who was just diagnosed with cancer and has several tumors. He's another one I have to pray for. The list only gets longer.
Happy Birthday America and God Bless this nation. This weekend brought me in a million different directions. I have a lot on my mind and not all of it is peaceful. I am delighted to live in a country where I am free to live as I choose, but I worry that the freedom we know and delight in is coming to an end. More and more of our rights are being taken away. Not only is the government trying to take away our civil liberties, but too many unbiblical things are becoming accepted. We have groups of people who are adament that their God given rights be allowed- some saying these things don't even believe in God, yet they stand firm that they be allowed to skip saying the Pledge of Allegiance, have equal benefits for same-sex marriages, go into whatever restroom they feel best suits their gender for the day, abort babies that are full-term and could totally survive and thrive outside the mother's womb, cuss in public, take what doesn't belong to them, and grow, sell, and use marijuana without question. Where have our morals gone? How has this allowed to happen? I will tell you why. Because we have allowed it to happen bit by bit. Sneaky maneuvers by people whose foundation is built on something besides the foundation of Christ sneak these things in. We accept a little and a little and a little....before you know it, everything we stood for and believed in is questioned. America is in danger. Moral turpitude is here. We have allowed it in and it's going to get worse. Drugs are killing people in our community. Fathers are killing children, brothers are killing brothers, and strangers are attacking unknown innocent people. When we have our current choices for President of the United State and have to choose the lesser of evil, we are in bad shape. All of this was disclosed in the Bible that it would be happening. Why are we surprised? I fear for our nation. I fear for the unsaved.
I am frustrated because I see peple wasting their lives away. You know the ones; the ones on focus only on themsleves and their immediate needs? The ones who don't plan for the future. The ones who waste everything God as given them on foolish things they think make life fun. The ones who throw their lives away for drugs. The ones who make the same mistakes over and over again and never learn. The ones who break the hearts of those who love them. Why can't they see how valuable they are to God? And why do children these days think they know all the answers and are disrectful to adults? Do they not consider their elders have seen, have lived, and have conquered many things? Yet they come in and declare themselves superior to someone their senior. How does one share the love of Christ with someone who thinks they know everything about science and are convinced there is no God?
How do I share with someone what I have seen and how I know there is a God. How do I describe the miracles I have witnessed? How do I declare my healing has taken place because God is not finished with me yet? I have tried to be an example to everyone I encounter, but obviously I have failed. I have lived a long time and I have had many experiences which are not all good. Yet I still believe in God. God is the head and the center of everything. To my dying breath, I will proclaim his goodness and never deny him.
When life throws you a curve ball, you don't just dodge what's thrown at you. You catch it and embrace it and you share the knowledge on how to catch that ball and run with it. I wasn't given this life for nothing. I was given it so that I may share and comfort others while they are going through a similar situation. "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows." 2 Corinthians 3-5. When Logan asked me for a verse to comfort him in his time of need because he didn't understand why he was going through his battle, God showed me these verses. They greatly comforted Logan and I read them to him often. That is what we are to do; share our experiences with others so that they may be comforted and know that there is a God who does care about them. It is our utmost duty to share with others. Some think I may be a little crazy for all the sharing I have done. But not only has the support I have received from you uplifted me, but I like to think that sharing my raw pain, discomfort, and turmoil along with my praises uplifts you too.
Helping others gives us a sense of accomplishment and helps us feel good. Have you ever been going through something and had someone share a similar experience with you? Did it make you feel good to know the other person made it through? That all was not lost and that you can survive and thrive? I know when Logan was sick I yearned to hear about survivors of leukemia. It gave me hope. Although Logan didn't survive, I still needed that hope while we were battling the most terrible disease that was upon our child. Through our experience with Logan we have been able to help others emotionally, financially, and by education the public. We have shared Logan's story and many have registered to be bone marrow donors and some have even be donors which has saved the lives of others. We have raised thousands of dollars for cancer research and patient support. I say this not to boast, but to urge you to make a difference in the life of another.
As I tossed and turned last night, I tried to give my frustration and pain to God, but my heart wouldnt let go of it. this morning I read this devotional written by Beth Jones. it is helpful to me.
I feel broken inside. Last night I received a text from a friend who is struggling with her chemo. She said, "I don't know why I am even doing this chemo that makes me so sick because I'm going to die anyway." I see on FB all the posts of parents pleading for prayers for their dying children. Yet I STILL BELIEVE! My faith isn't compromised, but my heart hurts so much. But I also saw a post of my friend Carol who is doing well after being diagnosed with AML almost two years ago. She was relaxing in a hammock and it warmed my heart. I think about Natalie who is a survivor of AML and recently had a scare with her lungs. They thought maybe she had a mass, but turns out she didn't. There is hope.
My heart is heavy
From the work it takes to keep on breathing
I've made mistakes
I've let my hope fail
My soul feels crushed by the weight of this world
And I know that you can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That you can mend a heart that's frail and torn
I want to know a song can rise from ashes of a broken life
And all that's dead inside can be reborn
Cause i'm worn
I know I need to lift my eyes up
But I'm to weak
Life just won't let up
And I know that you can give me rest
So I cry out with all that I have left
Oh Let me see redemption win
Let me know the struggle ends
That you can mend a heart that's frail and torn
I want to know a song can rise from the ashes of a broken life
And all that's dead inside can be reborn
Cause I'm worn
My prayers are wearing thin
Yeah I'm worn
Even before the day begins
Yeah I'm worn
I've lost my will to fight
So heaven come and flood my eyes
Let me see redemption wins
Let me know the struggle ends
That you can mend a heart that's frail and torn
I want to know a song can rise from the ashes of a broken life
And all that's dead inside can be reborn
Yes, all that's dead inside will be reborn
Though I'm worn
Yeah I'm worn
As children, we all had superheroes. Those characters we admired and wished we could be. What exactly did these characters have that we wanted? Strength? Courage? The ability to make a difference in the world? The power to fight evil? As adults we tend to forget about superheroes. We’re too mature to think someone could be all that our beloved superheroes could be. As a parent I found my true superhero; my son, Logan. He had all that my superhero could have. He had the ultimate strength and courage. He made a difference in the lives of thousands. He showed me that God, through him, was fighting the evil called cancer.
Logan showed me how to be brave and how to face fears with dignity, grace, and strength. HE showed me what it means to have unselfish love. He taught me to put others first. He showed me how to overlook my own needs and focus on others. He never put himself first. His needs weren’t important to him. He needed to be there for those who needed him.
Logan went through twenty months of chemotherapy, radiation and an umbilical cord transplant. He laughed through the vomiting and made jokes to cope with the pain. He went out of his way to make others feel good. He always had a twinkle in his eye and a smile on his face.
Logan truly cared about others. He cared about their pain. He waved ot the children who would go by his hospital room. He always had a smile to give away. He didn’t sit in bed crying, “why me”? He made the best of his situation and enjoyed his time on earth.
My son is now an angel in Heaven. You see, Jesus called him home on October 24, 1998. Eleven years and four months since our Heavenly Father loaned him to his father and I. WE miss him so much, but we know we will see our “Superhero” again. (written on 11/27/98)
It's so hard to go back and read these things, but I am glad to honor our son. I got a nice surprise awhile ago which helped cheer me up. Meghan face timed me and I got to see my three girls. I read Ollie a chapter in the Raggedy Ann and Raggedy Andy book I have had since I was a small child. I have a series of them! Granny actually gave them to Mark back in 1967, but they have always been "my books". I read everyone of them several times. I am thrilled to now read them to the girls, even if it is long distance. I got to "virtually hug and kiss both girls" and they hugged and kissed me back. I miss them so. Meghan gave me a "tour" of their new trailer and now I can envision where they sleep. I'm looking forward to seeing them in October.
I am feeling useful again! Thursday Debbie and I met in Palmer and helped stuff some backpacks for underpriveledged kids. I feel like we didn't do much. I was running behind because I was having my hair done that morning. We stuffed several backpacks and before we knew it, all the backpacks had been filled! It's great to be part of this caring and helpful community. Everyone pitches in to buy supplies and to help fill the packs. So many in our community simply can't afford the expensive school supplies. I am glad we could help out even if it was just a little bit. While there I visited with Paula, a friend of a friend. I had met her a couple times before and was happy to run into her. She shared with me her incredible experience with medical issues. Her story made me feel ashamed to ever complain! She was in a medically induced coma for 2.5 months! She had a medical procedure that went bad quickly and had to be sedated for her body to heal. Can you imagine waking up and it's 2 1/2 months later? Try throwing in 9-11 happening while you are asleep and trying to understand what happened to your country while you were sedated. None of us could fathom the destruction upon our nation while we watched TV that morning, but being "told" about it later is just unfathomable. Paula told me of her struggles with her lungs afterwards. She was on oxygen for six months! I complained about five weeks. I feel a little silly right now. She even rode her bicycle with her oxygen tank. I was too embarrassed to even go to the store with mine. I need to adopt an attitude like Paula's. I am so impressed with her tenacity and courage. The moral of this story is someone always has it worse than you do, so appreciate what you have and stop complaining!
Thursday night we drove down to the cabin. Patrick and Roy went fishing (big surprise) and I took the dogs for a walk and to pick berries. After two hours only had two cups of berries. The dogs weren't impressed either. I got a nice nap in and pretty much just rested most of the day. I have been so tired lately. I certainly don't mean to complain after my above story, but I am having more and more issues with my knees. I suspect it's the tapering of the Prednisone. It's harder and harder each day to bend down and up without assistance. I wonder when or if that will ever change.
This afternoon we went to our friends Mike & Carol's house for a get together to welcome their daughter, Aurora, and Aurora's boyfriend Jan, who are visiting from Germany. I hadn't seen Aurora in a few years so it was wonderful to visit with her and hear her stories about living all over the world. She has seen a lot in her thirty years. I am so happy to see how delighted she is with her life. I had Aurora and her brother Cody in my daycare all those years ago. It was neat to listen to Aurora talk about Logan and how sweet and kind he was. I am so glad he has not been forgotten by his childhood friends. When a mom loses a child, she wants to know her baby is remembered and honored and never ever forgotten. Logan's life had meaning andwas puroseful and I want to honor him everyday. I can do that by continuing this fight. As Logan said, "It's not fair that ANYone has to go through this." I may have some complications and I may not be allowed to work right now, but I refuse to give up the fight. I will continue to rebuild my strength and be open to whatever it is that God wants me to do. Who knows what that may be? It's hard to say, but my ears and eyes are open the possibilities and so is my heart.
Today is Olivienne's 3rd birthday and we are not with her. I had forgotten that we were in Rochester last year and we missed her 2nd birthday too. That makes me sad. But we did face time them today and I sang her happy birthday several times. I had gotten up early to make a homemade zucchini blueberry cake with lemon cream frosting to take to another party today. Ollie asked me where her birthday cake was. I pulled it out of the refrigerator and showed her. She strongly requested I put birthday candles on it and sing her happy birthday again. Of course Papa and I readily complied. It was cute and a great way to share her special day with her. I guess we will have to do the same thing when Ailynn turns one the end of October.
This afternoon we got to visit with Laurie and her family celebrating Caitlin & Delanie being up here visiting. I guess this is the summer for visitors who used to live in Alaska. It was a pleasure to see them all and I'm so glad we have all kept up our friendships over the years. Friendships and relationships are to be valued. I have always been sentimental and love continuing to keep in touch with others.
I put Bane on and mowed my yard tonight. It is so hard on me to wear that darn mask for so long. I was breathing heavily after I was finished, but I recovered quickly. It sure is satisfying for me to be able to do simple homeowner chores. I was going to dust when I finished, but I decided that can wait for another day.
Before we visited with friends, we went to church! It was my first time at Church on the Rock in months. I was so happy to be back. I want to get back to a regular church schedule and also start attending life groups and Connect on Wednesdays with other women. It will be so wonderful to be part of the church community again. Going sure refreshes my soul.
Yesterday was a fun day for me. Debbie and I went to Arctic Valley and picked blueberries for three hours. I was absolutely exhausted on the way home. It's a good thing she was driving because I was so close to falling asleep numerous times. We got about six cups of blueberries. I realize that's not a lot for three hours, but we worked HARD for those six cups. I guess we just aren't going in the right areas because we have to really really work to get them. I see pictures people post of blueberries all in one area and they are big and juicy. The ones we pick are small and they are scattered around. But, doesn't really matter because we did get some and it was fun! I came home and took an evening nap just to recover. Tonight we are having company. Rick Smith, the former owner of E.J.Bartells will be spending the night with us. He and Patrick head out in the morning for Whittier. They do an annual Whittier to Valdez fishing trip every year. It will be great to see Rick again as it has been a few years since I have seen him. I have been cleaning since 0500 today.
I have two substance abuse prevention meetings today, so today will be another busy day. I would love to see my parents sometime, but their schedule is busier than mine and they don't have any free time to see me. I miss them. I also need to get over and visit Granny as I haven't seen her in several days.
We had a very enjoyable evening last night visiting with Rick. Rick was absolutely amazing to us when I was sick. The employees of the company he owned (where Patrick works) did all they could to help us emotionally and financially. We sure miss Rick being the owner, but we are thankful for his continued friendship. I made cookies last night and he must have eaten 6-8! I sent the rest with him to take on the fishing trip. It makes me feel so good to be able to give back a bit. This morning I got up at 0500 and made them a big breakfast. I confess, I went back to sleep after they left. I was exhausted. Today I had my follow up appointment for my shoulder. The only thing wrong is an impingement and it was swollen inside there. I wish I had refused the MRI because of the cost. After the appointment I visited with my mom. It was so good to spend time with her again. I walked Ringo for about three miles, ate dinner, visited with Granny for a bit, and then volunteered at Thrifter's Rock for an hour. I am so fatigued. It's not even 8:00 and I am so ready for bed.
When I walked by Fingerlake School, my heart hurt so much. I miss my three kids being little. If I could turn back the clock, I would be such a better mom. I would do so many things over. I would love them better. I would be super mom and participate in every activity I could with them. I would never let them grow up. I miss my children. I just had a young man at my door selling discount cards for Colony High football. Once again I am holding back the tears. He reminded me of Casey and I wish I could turn back time. He wanted to tell me what the money would be used for, after I had already bought the card. He was so polite. He held out his hand to shake mine and then hesitated. He had read the sign we have about my compromised immune system. He was concerned that maybe shaking hands would make me sick. His parents did a fabulous job raising him.
Yesterday I was exhausted after grocery shopping and walking with Debbie. We only went two miles, but it was a hot day and I was wearing jeans and a flannel type shirt. It felt like a hundred degrees and I felt like I went ten miles. I was so disappointed to see that by 9:30 p.m. I had only walked 2.86 miles. But first I must backtrack and mention that by 7 p.m., I was ready for bed. I fell asleep on the couch for a few minutes. When I woke up, my mind was racing and made the "mistake" of checking my fitbit. I decided that my low mileage just would not do, so Ringo and I walked two more miles at 9:30 p.m. When we got back I was so wound up I couldn't sleep till about 0200. Trust me, it made for a long day today. Today was filled with activities. I got up at 0800 and immediately started preparing a dinner for a couple in our church. I wanted to get it prepared early because I had such a busy day. Casey and I visited with Granny and he mowed her yard while I attended the CO Academy graduation for my friend Amy's daughter, Ashlee. Then I picked Casey up, went back to the house and got the dinner out of the oven, dropped Casey off in Wasilla, took the dinner to the family, got back to the house and got my hiking boots, and went to meet Annette and Joyce so we could go berry picking. Yes, again with the berry picking. I think I am addicted. I was so tired that I almost cancelled, but I forced myself to go and I am so glad I did. It was good to be with these ladies again. I missed them so much! I can't whine about not being around friends and then pull the "but I'm too tired" card. That's not right or fair. So I went and managed to stay awake.
It was nice to see so many friends at the CO graduation. I was warmly greeted with a hug and a smile by many. I was also asked several times when I was coming back to work. I wish I had an answer. I sure do want to, but it seems this exhaustion is sometimes getting the best of me. Instead of gaining more energy, I seem to be more tired each day. I hope sometime soon I can say, "I'm full of energy."
This morning I got an upsetting phone call. I have yet another friend who may have cancer. They suspect it may be a rare and aggressive type. She is frightened and I ask you to pray with me that she will not be diagnosed with cancer, but instead it will be something manageable. I think a lot of my exhaustion is I have so many burdens for so many. There are a lot of hurting people in this world. I just read about a fundraiser for a family in our community that will take place tomorrow. Both the son and the mother both have aggressive cancers. Another article in today's paper was about a woman in Wasilla who just passed away from pancreatic cancer. It's just too much and I am tired of seeing people hurt so much.
NEXT SESSION IS "FALL 2016" This page is getting too long. Go to menu and click on Fall 2016