9/2/18. Ah, September... It was 40 degrees this morning but quickly rose to 60 by afternoon. It's going to be in the mid 60's all week with no rain!

come was beautiful today, and Pastor Paul preached a great message about "One Nation, One World." In June 2019, 10,000 missionaries are expected to be in Peru at the same time spreading the news of Christ throughout their entire nation. It gave me chills just thinking about it. I would love to take part in that, but I'm not medically ready. I believe in the next few years that a missions trip will be in my future. I enjoyed the two I went on in high school and long to travel to help others again.

God truly blessed Patrick and Roy with a moose yesterday morning. They arrived back home this afternoon and will spend the day cutting it up. They are excellent hunting partners and enjoy the hunt together. We are so thankful God provided fresh and healthy meat for us this winter. It is after midnight, and I cannot sleep. I am a bundle of nerves. I long for sleep, my mind is exhausted, and my body is weary, yet they are not cooperating with me, unfortunately.

9/3/18

Today has been a very emotional day for me. First, Ollie went to kindergarten, and I wasn't there to witness the event. I got a little video about her description of her first day, and she seems to have had a good time. I can't believe the precious little girl is at the age of kindergarten. I worry that Ailynn will be lonely. I sent her a video telling her and Boe to enjoy having their mommy to themselves, and before she knows it, Ollie will be back home.

Then I found out that Meghan's step-mother-in-law, my friend Joyce, was transported by helicopter to Anchorage yesterday after her heart stopped TWICE at the state fair! She was on a ride with her daughter, and her heart just stopped. Twice she had to be resuscitated!  Twice she died! I was a mess when Meghan told me that. Joyce is one of the kindest women you could ever meet. She is in ICU in Anchorage. Please pray for her.

When I get stressed, I get grouchy. I am working on calming myself down, so I don't feel stressed. Granny has fallen twice in the past couple of weeks, and she needs a heart test done. Her BP is elevated, and she's super tired. I don't have time to go over very often, and I suffer from guilt about that.

9/5/18

God blessed us with another beautiful day. When I got home today, I took out my poor puppy who was stuck on the deck for several hours. He was so excited to walk. I saw a neighbor outside and began chatting with her. Ringo was NOT happy about that at all. All the sudden, I felt weak. I looked at my pump, and it showed 63 and continued to drop. I barely made it home, and poor Ringo was so disappointed about the short walk. Thankfully Patrick was here, and I just said, "help me." He got me juice and some chocolate chips. I checked my blood sugar, and it was 52. Earlier today it was 404. The swings are hard on me. They wear me out. I didn't get to nap today either. I think it will be an early night for me. I am so thankful I was able to make it home. I'm also grateful I felt the low blood sugar since I don't always feel them.

My friend Joyce is having a defibrillator put in tomorrow. They were supposed to do it today, but more critical patients bumped her off the schedule. I have been tearful since I heard about her heart stopping.  I want to hug her and be assured she's okay.

9/6/18

Joyce's procedure went well, and she's expected to return home tomorrow, thankfully. I hope to see her this weekend.

Ollie had a meltdown at school and isn't liking it. I wish so badly that they were close by so I could talk to her about it. I did send her a little video telling her I remember being scared in kindergarten and missing my mommy too. I don't like that we have limited visits.

My blood sugar dropped low on my walk today again. I ended up calling for Patrick to come to get me. Now I'm nauseated and so very tired. I took a nap and didn't wake up until 9 p.m.!  I think it's about time to go to bed for the night. I'm not getting much done because I just don't feel well. I did get the results of my A1C today. (average 3-month blood glucose levels) It dropped from 8.4 to 7.4 and now 6.9 which is super. The 6.9 is since I got my sensor, so even though it doesn't seem like I'm in good control, the pump/sensor combo is keeping me in better control.

"But the pot he was shaping from the clay was marred in his hands; so the potter formed it into another pot, shaping it as seemed best to him." Jeremiah 18:4

I feel like the marred pot. I'm a mess. I don't feel beautiful. I don't feel worthy of much. But thank goodness my potter (God) sees me as fit to be fixed, to be reformed and restored, and made into a beautiful new creature. Oh, and my husband loves me too!!!

 

9/8/18

This morning I read a wonderful story about a local middle school having an inspiring assembly to encourage kindness, compassion, and inspiration to be the best person, student, and friend they can be.  I love that. Why couldn't they have had those kinds of assemblies when I was in school?  Finally, experts realize that children learn to be successful through encouragement and real-life examples of overcoming trauma. This school brought a particular speaker in- one who went from thug life to motivational speaker. It appears the children eye him with respect and admiration. I am so impressed with this school for "changing it up" and honoring students by encouraging them to grow in their relationships, their academic works, and their social skills. They honored a teacher there who has stage IV cancer and shared words of affirmation and love upon him. How important it is to share how much we care about someone before they are not here to share it.  Speak up today and tell others how much you value them.

After reading that, I watched a news clip about two soldiers who got into an altercation. Within three seconds, the victim's life was changed forever as he now has a TBI and hearing loss. Three seconds of rage inflicted upon him by another ended his life as he knew it. He had just gotten back from Iraq. How can we emphasize the danger to others when we lose our temper and lose control?  I think the perpetrator of this assault feels deep regret. I hope his anger issues will be addressed.

Then I saw a headline I refused to read about a 19-year-old beating a homeless man to death. I can't read any more bad news. I'm going back to my happy place at the middle school where children are learning how important it is to be kind. I like that place much better than the other places I mentioned. Happy, happy, happy place......

9/10/18

Last night was a painful night for me. These darn hips. Sometimes I think they are better, other times I think they are worse. I went to Zumba today despite it all. I hadn't been in months. The first few minutes I felt like it was a mistake, then it "popped." I think it's my IT Band popping. I can feel it, and I can hear it. Whatever it is, I want it to be better!

Joyce did get her defibrillator put in and is now home. I got to see her yesterday. She looked well but was tired.  I'm so happy I got to lay eyes on her. I just needed to see her.

Ollie cried when dropped off at school, but she made a friend, so today was a better day. This poor Grammie just can't take it!  

Tomorrow we remember the terrible attacks on our nation. We recognize the lives that were lost, and we remember those who survived but are forever traumatized by their experiences. We must reflect on our military members who so proudly defend America.   We must not forget to be grateful for our freedoms, our ability to choose our paths, and we must respect our fellow Americans. We must allow each person to decide their destiny. While we may not agree with someone else's choice, it is their choice to make. Let us honor our peers, our children, our friends & family by allowing them to walk their journey. But let us never forget that we are one body. We are one nation.

9/12/18

As expected, many wrote their remembrances on social media yesterday about what they were doing when the terrorist attack hit America.  I think we all remember what we were doing that day because everything simply stopped when we heard the news. It was unfathomable to witness what the report was showing us. I can't imagine what it was like to see it in person. Talk about trauma!  I feel people desire to express how they felt that day because they are still processing it. What happened was so traumatic that most people hadn't healed emotionally from it. They need to share the same stories over and over because they are still in the process of healing.

It is important to express our feelings and our thoughts because when we bottle them up, problems intensify.  My granny is experiencing some intense emotions, and it's affecting her physical and emotional health. Her blood pressure is very high, she can hardly see, she worries about everyone, she can scarcely walk, and she is simply tired. She is 90, and I think she is experiencing the stage, Generativity versus stagnation." She is wondering, " Did my life count?  What is my legacy? Will I be remembered?" (Erikson's Theory) I suggested the family write her letters about memories of her, how special she is to each of us, and how we will always remember her. Then I suggested we each read the letters to her, so she understands she will ALWAYS be part of us.

My mom is very sad as her best friend, Donna, is in her last stage of life. Alzheimer's has taken over, she has heart issues, and has pneumonia.  My heart hurts so much for my mom. I sincerely hope she goes to see Donna soon. I don't know if it will help or hurt my mom though. Life can be so tricky at times.

"You will not have to fight this battle.  Take up your positions: stand firm and see the deliverance the Lord will give you. Do not be afraid; do not be discouraged." 2 Chronicles 20:17.

9/13/18

Exhaustion has hit me, but I'm determined not to give in to the desire of sleeping.  I took Ringo on two short walks today. They may have been short, but he is convinced I am the best person in the world. He expresses his delight every time I get out his leash. He cries with joy and it both irritates me and amuses me.

The weather this fall has been spectacular. It's been 70 degrees the last couple days. I believe this is one of the most beautiful falls I can recollect. I do understand the weather is known to change quickly in Alaska, and it may snow in two weeks. For now, I'm enjoying the sunshine and relish in the delight of walking my dog outside each day.

9/16/18

The weather continues to be beautiful. Because I had so much to do today, I listened to church- FB Live while walking Ringo. I am proud of my ability to multi-task haha. I really should take two walks a day, but my hip is hurting pretty bad today. I just got out of soaking in the bath. That tends to help somewhat.

The message was so good today as we were reminded that God's love and acceptance are more real than his desires for us to get caught up in the legalism of the church. We spend so much time pointing fingers, demanding our rights, and arguing that we miss the whole point that God loves us just as WE are and we should love others for who THEY are.

There is going to be another fundraiser for a local man in November. I plan on helping that day as well as selling tickets beforehand.  He recently had a transplant for leukemia.  I'm also trying to connect with a lady who is going to be having a transplant as part of the peer connect program with Be the Match. I left her a message today after she requested to speak with someone. She lives in another state. There are so many people with cancer, and it's hard to grasp the impact on us all.

I was reminded today of how generous Americans are.  A young girl in an Alaskan village was recently murdered. One of her supporters made a Go-Fund-Me page to raise money for the family to travel for the funeral.  When I checked to see if they reached their goal, I was delighted to see they exceeded it by several thousand dollars. Americans can be so giving towards one another. I saw some news report about a guy's car getting stolen after some football game. The local dealership stepped in to help him.  Isn't it great to hear good stories!

Patrick is fishing on the Kenai this weekend and staying in our cabin. I haven't been down there for a while. I miss it!!! I leave Friday night (early Saturday morning) for Washington D.C. I will be there till Wednesday night, fly back, and then turn around and fly to WA state with Patrick and our friends the Bagleys. We are going to a concert at the Gorge.  We have never done anything like this before, and I'm excited. I do realize the week I am gone takes away precious time with my parents. They leave October 10th. I got to see them for a bit yesterday at Granny's. It's going to be hard not having them here. I will miss them, but I'm so happy for them. I know they rest more when they are in Texas.

9/17/18

It's late. Very late. It's midnight, and my body and mind are weary, yet here I sit. I am full of anxiety and cannot shut my thoughts off.  Casey cut his finger and ended up in the ER last night, and they performed surgery on it. I didn't find out until this morning. He drove himself in the middle of the night and told no one. He is still in the hospital and declined a visit from me.

My mom's best friend is doing worse each day. My mom is distraught, and I don't know how to help her. Granny ended up in the ER today suspecting a stroke. Thankfully, she did not have one. 

This morning I was thinking about how we view ourselves.  I have a large mirror in my bedroom. When I look at myself in that mirror, I look pretty good. The mirror, despite its large size, compliments my body.  When I go past the next mirror in my room, I notice some wrinkles and some cellulite on my legs. I don't like looking in that mirror. When I go to the mirror in my bathroom, I see many wrinkles and a whole lot of cellulite. It's not flattering, but that is how I look whether I like it or not. I feel that the way I perceive my body is similar to how I look at what is on the inside.  If I just look in the one mirror that appears to be flattering, I can fool myself into thinking I don't need to do anything at all to change me.  But the next mirror hints at some flaws. I can choose to ignore those flaws and go back to the first mirror, but I start thinking that maybe I need to do something about them.  The third mirror exposes all of my flaws.  Again, I have the choice to run back to the first mirror and ignore them, or I can face the fact that I am flawed and do something about it.  I must understand that changing my body overnight is not going to happen. I must have faith, patience, and endurance to change. I must be willing to be steadfast in my efforts to improve my body.

Similarly, I must be willing to change my inner spirit.  I can choose to ignore my flaws- my snide comments, my sarcastic tone, or my lack of patience.  I can go to the next "mirror" to examine a bit more and see even more internal ugliness. Again, I have a choice to get rid of that ugliness.  I can go back to the "safe place" where I ignore the flaws. The third mirror represents some intense conversations with God while examining my inner spirit.  I may not like what I see when I do this, but I know that with faith, patience, and endurance, I can change and be beautiful.  The difference between inner and outer beauty is outer beauty will fade.  Inner beauty will only get more beautiful. I want to have the inner beauty that sparkles like diamonds and shines like polished silver.

9/21/18

Joyce Meyer made a great statement the other day that stuck with me.  She described meeting a woman who was sharing all her woes and problems.  The lady said, "Life has just thrown me under the bus." Joyce said she replied with, "Life threw me under the bus too. But I decided to get in the driver's seat." What an amazing response. No matter what happens in our life, we get to decide how we are going to react and what steps we are going to take next. Will we let the bad ruin our lives, or will we pick ourselves up and drive the bus?  So many people say to me, "I don't know how you survive after all you went through." To be honest, I don't see my life as that bad.  Sure I've had some crap happen. Some bad crap, but so many people have had harder lives. Sometimes I feel I am looked on with pity and my hackles get up just like a dog.  I go into defensive mode because I don't want to be pitied. I also have a hard time accepting compliments. I tend to brush them off when people tell me they admire me. I suppose it's because I don't feel I deserve it. I see my flaws in the mirror (and my self-examination), and I want to point them out because I don't feel worthy of praise.  Isn't that something. Someone should hire me as their analyst as I do a pretty good job on myself....

I leave tonight for D.C. I'm very excited that I get to meet with Senators Murkowski & Sullivan and Congressman Young to plead for more funding and services for cancer patients. What a fantastic opportunity I have and I am so grateful. I pray for my hips to feel better. I am having a lot of pain and discomfort right now. I want to be able to walk without pain, so I don't hold anyone up by having to wait for me.

9/23/18

My niece Melissa turned 20 today I always flash back to te day of her birth.  We were anxiously awaiting news while in Seattle with Logan.  Logan was excited too,  yet he expressed concern that when she was born, we would forget about him and focus on her. I wonder if he had a premonition that he was going to die and wondered if we would remember him. We will never forget my strong boy  I'm in Washington D.C. now for the ACS CAN convention. It's hard not to cry when I think about my sweet boy. I wonder why I'm here and he is not. I wish he had survived. I would gladly have sacrificed my life for him to remain here on earth. He would do such great things for many. I don't understand God's reasoning, but I will accept it. I will go on and do as much as I can for others in Logan's memory.

My "eye problem" happened on the plane last night and I'm in quite a bit of pain. It makes it hard to focus on anything when my eyes hurt. At least it takes away the focus on my hip pain. Always a bright side, right?

There are so many people here, and everyone has a story worth sharing. I look forward to hearing some of those.

9/24/18

It was an exciting day today as we learned how to initiate conversations with our Congressmen and Senators. Tomorrow is the big day where we go to the Capital and ask for an increase in funding for cancer research and for colorectal screenings to be provided to Medicare patients at no cost, even when polyps are found during the routine procedure.  Right now Medicare patients are being charged up to $350 if polyps are found because of the coding changes. That's not right! We are also asking for support for palliative care. We will finish up at the Lincoln Memorial with 30,000 Lights of Hope1 It's going to be fantastic.  Tonight we had a Superhero themed party, and I put on my WW gear, and we celebrated the work that we have done and our hope for tomorrow.  We are survivors.

9/25/18

This morning some well-known basketball coaches shared their personal stories of how cancer has personally affected them. I was moved to tears as I remembered my son, Logan Joseph Marre, running sluggishly down the basketball court when he was nine. We all gave him a hard time for not moving faster and doing as well as he usually did. Little did we know that just a few days later he would be diagnosed with leukemia. Although I am so grateful for my own survival after also being diagnosed with leukemia, my real purpose for being involved in advocacy, policy making, and support is because of Logan. I never want another parent to know what it is like to lose a child to cancer. I will fight for an increase in funding for cancer research until I take my last breath. I have no desire to be remembered for anything except for being a mom who loves and advocates for her children, grandchildren, and for ALL the children in the world. Our Alaska team is meeting with Senator Murkowski, Senator Sullivan, and Congressman Young this afternoon to ask for a $2 billion increase in funding for cancer research. We NEED this! We have all been touched by cancer. I do this in honor of ALL my family and friends who have or had cancer, my mom- a breast cancer survivor, my son, and yes, for me too. I’m grateful to be alive to be part of this.
We also will be asking our senators and Congressman to support Palliative Care and Hospice Education Training Act (PCHETA) and removing barriers to colorectal screenings. We are a group of three mighty warriors representing Alaska today at our nation’s capital. Together we CAN make a difference.

9/27/18

I didn't realize I let several days go by without updating you all on the fabulous conference. I heard from motivated professional basketball coaches who raise money for cancer research and patient support. We had the host of American Ninja Warriors- Matt Iseman speak to us about his experience with Renal Cell Carcinoma. He is a medical doctor and a comedian and hilarious. He described his surgery to remove his cancer as "one of convenience." It took place during some great football games. He was able to lie in his hospital bed with a morphine pump and a catheter. He never even had to miss a second of the game to use the restroom. He made it sound like the perfect day of watching football. We all know that it's not that fun to be a cancer patient, but he made his experience humorous. What can we do but laugh when we are faced with such difficulty?? The conference overall was just amazing. I love what ACS CAN represents. The organization focuses on changing and improving policies to assist cancer patients. I heard stories of people's terrible battles with multiple episodes of cancer and watched them courageously advocate for research for a cure.

I got to meet Congressman Young who just cracked me up- he's a funny guy with a heart to help people. Senator Sullivan was a concerned man and open to our requests, and Senator Murkowski's staff were also very receptive. I am pleased to tell you that $2 billion increase for cancer research was approved by both the House & the Senate.

Lights of Hope was terrific. 33,000 luminaries surrounded the reflection pond at the Lincoln Memorial.  It was beautiful, unique, and sad for me as I reflected on the loss of Logan and all my friends and family members.  I miss Logan so much. I know my Mom misses her parents and siblings. I miss my friends who have died from cancer. I am motivated to keep fighting for all.

We are now in Eastern Washington and will be going to the Journey/Def Leppard concert tonight. I am tired and worn out and stressed over school work that hasn't been done, but I also must remember I do have the right to enjoy time with my husband and friends.

10-2-18

Happy October everyone. Although the month is typically beautiful with the lovely leaves following to the ground and the smell of cinnamon and pumpkin often present in homes, I don't like October.  October is Meghan and Ailynn's birthday, so that is a good thing. But it's also the month my baby boy left me.  October 24, 2018, will be twenty years. Twenty years!!!! How can it possibly be 20 years when I remember it like yesterday. I remember his mischievous smile, his pranks, his sweet disposition, his compassion, and his excellent attitude. I miss him so much. I am genuinely hurting as if I have been kicked in the gut. In nine days it will be four years since my diagnoses with leukemia. I don't care about me. I just want my son back. He was so kind and precious, and our lives are not the same without him.

We got home Sunday night, and I immediately had to help a friend in crisis. I didn't get home until 0100 Monday, and I'm still trying to catch up. My body and mind are so tired. My parents leave in a week, and I haven't had time just to visit them. Granny is missing me. I feel like I don't have anything left to give anyone. School is holding me captive. I'm tired and very stressed.

10/03/18

I saw Granny today, and I am very concerned about her memory loss. She is struggling physically, emotionally, and cognitively.  I know she's almost 91, but she's my Granny, and I remember her as a strong woman who could swing an ax, clean a fish, fix a meal, and play games without stopping to rest. It hurts my heart to see her age. I see aging in my parents too, and I just don't like it. I told my aunt Connie today that I wish Jesus would just come back, so I didn't have to lose any more people that I love.

10/5/18

Alaska fall is merely amazing. I heard from my friend Amy today that it snowed heavily in MN and trees fell on the power line knocking out power. Meghan said it has snowed in MT and they are going back to CA next week. But here in Alaska, it's warm, sunny, and free from snow. I just took Ringo on a long walk which he appreciated very much.

Patrick went to the cabin, but I stayed home to study and visit with my parents and Granny. He leaves for Naknek fishing trip next weekend. The following week he will be in Fairbanks. We are like two ships passing in the night.

I get to visit with my friend Pam from Germany tomorrow. She, unfortunately, had to fly home to attend the funeral of her 29-year-old cousin. Unfortunate circumstances to return for a visit, but I'm glad I will be able to see her.  Life is busy, but I do realize life is also short. We must make time for those we love. We never know when it's going to be the last time. That's a phrase we often hear, but I don't think we realize how impactful that statement is. Things can be over in a split second. I have a "second mom" in Indiana who is now on Hospice. It won't be long before she sees Jesus. I saw her 1.5 years ago and didn't know it would be the last time I would see her. Enjoy your loved ones and be kind to strangers. Offer compassion and grace. My brother is offering both to a homeless man who is living under a bridge close to his house and business. He is feeding him meals and making sure he is staying warm at night by providing him with a sleeping back and other supplies. I'm working with my friend Laurie who runs Homeless Committee to get him some services. My brother is so much like my parents. I love his giving heart.

10/7/18

God's timing is impeccable.  This morning I pulled out on Bogard Road headed to church. I looked to the east of me to assess for traffic. There were no cars coming, but I did see the most spectacular sunrise peeking through the trees. At the same moment that I saw the sunrise, a song on K-Love came on, and I am not lying when I say the first words I heard were about God's Let me. Coincidence? I think not. At that moment I realized I've forgotten to notice the little things and appreciate the beauty God gives us each day.

The message at church was about living like you are dying- learning to appreciate the little things and taking time to enjoy life, not just "exist". We sang a song with the words, "Fall at your feet" and I instantly visualized falling at the feet of Jesus saying, "I'm not worthy" over and over. That reminded me of a movie that Casey loves  "Wayne's World" where there is a scene where two ridiculous characters are talking and one bows to the other and says, "I'm not worthy, I'm not worthy!" Well, that's just a silly (and funny) movie, but someday I will fall at the feet of Jesus and exclaim my unworthiness because I am definitely not worthy.

In the days of despair, grief, and sadness, we are told to have hope. I am a firm believer that we cannot have hope without faith. What is the purpose and meaning of hope? What do we want to gain from hoping? What is our ultimate goal? All these questions come to mind, and I can't shut them off. It seems the older I get, the more curious I become. I no longer just accept an answer, I want to search to prove its validity. I may not be able to prove the existence of God, but I sure cannot disprove it either. My hope is in Jesus because I have faith.  As Christians, we want others to have hope, but without faith, they cannot truly have hope.

What grace and compassion am I offering to others? I ask myself this on a daily basis. I'm hung up on school; a couple of online classes consume my every thought and action. I sit all day long reading. My hips are getting worse and worse, and I wonder if I will be able to walk by the time I am done. I feel isolated and realize I am not helping others the way I should be. I am self-focused right now which sounds exceptionally selfish. I would love to figure out how to have a healthy balance. I seem to be cold or hot. I am either present, or I am not. As Christians, we are instructed not to be lukewarm, but maybe I should figure out how to give a little more without experiencing a mental health breakdown. :) God has a plan for me, and that's why I'm alive. I want to learn more so I may better assist others in their path. Please pray for me to be able to do this without collapsing.

The Angiak family briefly shared about their missions trip floating the Yukon and visiting villages this summer. Often when we think about missions, we envision overseas trips. They kept it local and shared the love of Christ with Alaska Natives. I hope to attend their talk on Friday night so that I can hear more about their experiences. I recently heard about a tradition in one of our villages.  When a person dies, the family dresses her in her traditional Native clothes; then someone performs a ceremony sprinkling sage while performing a symbolization of dancing around the body. They then transport the body back to the village and are met with a massive procession of cars and a potlatch is held after the service. When I heard about this, I was filled with gladness that the Native peoples are secure in their traditions and continue their rituals.  There was a time when the American Government sent missionaries to force the Alaska Natives to discontinue their traditions.  That caused great generational turmoil and trauma that is still felt today.  I believe we are now at the point in our thought processes where we see the importance of honoring Alaska Native and American Indian traditions. That doesn't mean God is not present. But God and traditions can and do, work hand-in-hand. The Angaiak Family honored those traditions while sharing God's love with the AN people. I think healing will take place if we honor the cultural differences of others while sharing our faith with them to bring them hope.

Here's what I wrote about the conference I attended:

Funding for cancer research is essential.  This year in Alaska there are an estimated 3,550 new cancer diagnosis and 1,120 estimated deaths due to cancer (CAN, 2018).  In the United States, it is estimated that 1.7 million people will be diagnosed with cancer and 609,640 people with die (CAN, 2018).

I was invited to attend the annual American Cancer Society Cancer Action Network (ACS CAN) conference in Washington D.C.  I spent four days learning about why funding for research and services for patients is essential.  The director of the National Cancer Institute (NCI) was one of the speakers.  Dr. Ned Sharpless did an excellent job of describing how researching cancer cures works.  Dr. Sharpless previously worked as a hematologist/oncologist at Dana-Farber/Partners Cancer Care, both which are part of the Harvard Medical School.  Dr. Sharpless expressed his love of research, and he is the 15th director of NCI.

There were approximately 600 volunteers at this conference, and we were all given a task; to lobby at a Federal level for the following:

  1. 2 billion dollar increase for cancer research
  2. Support for the Palliative Care and Hospice Education and Training Act (PCHETA) S.693
  3. Removing barriers to colorectal screening H.R. 1017 & S. 479

There were two volunteers and one employee of CAN present for this conference.  We met with Senator Sullivan, Congressman Young, and the staff of Senator Murkowski.  Each person was supportive of these issues and offered their support.  Congressman Young and Senator Murkowski were both co-sponsors for the increase in funding and for removing barriers to colorectal screenings.

Colorectal cancer is the second most common cause of cancer deaths in the US (CAN, 2018) and is preventable if regularly screened by colonoscopy. Usually, screening colonoscopies are covered at no charge. However, Medicare patients who undergo routine screening are being charged a fee if a polyp is found during the colonoscopy because of the change in coding for the procedure.  If this happens, the patient will be charged up to $350 which may be unaffordable for an elderly person.  Because of the fear of costs associated with the test, doctors are finding that patients are reluctant to undergo routine screenings which means their cancer may be advanced before it is discovered.  Our goal was to get this barrier removed in both the House and the Senate. Senator Dan Sullivan agreed to be a co-sponsor after our visit!

PCHETA offers improvement in treatment and quality of life for patients who have a life-threatening illness.   This Act addresses the need for training for all medical staff. Due to the Opioid Crisis, pain medication is sometimes withheld.  PCHETA would protect cancer patients from being denied pain management.

The 2 billion dollar increase for cancer research passed both the Senate and the House while we were there.  The President must sign off on this bill before the funding is granted.  In 2017, Alaska received a total of $16,807,959 NIH funding and $160,384 NCI funding (CAN, 2018).

I was able to participate in several classes.  The Medicaid Class was very informative.  I found out that all states have different levels of reimbursement from the federal government for the Medicaid Expansion.  I also learned that not every state participates in the expansion which leaves thousands without affordable healthcare.  Some states require Medicaid recipients to pay a premium, and if they miss a premium, they can deny them further benefits. 

Tuesday evening, we viewed 33,000 luminaries surrounding the Lincoln Memorial.  Each luminary represented a loss of life due to cancer or a cancer survivor.  It was a fantastic sight to behold.

I have a new appreciation for the services the state of Alaska provides to our residents.  The Medicaid Expansion has saved many lives as people can get the medical treatment they deserve to have.  Our Senators and Congressman seem to genuinely care about Alaska residents.  I am proud to be an Alaskan, and I am thankful for the opportunity to participate in this conference.

10/8/18

I finally found a doctor who is listening to my specific complaints about my hips. I have a new MRI scheduled next week and will follow up with the doctor at the end of the month. He agrees my symptoms sound like complications of the Cipro and Levaquin I took after treatment. My mom has been telling me that's the issue for years and she is right. I may end up having surgery to repair some of the issues. We shall see what he says after reviewing the updated MRI. I'm so thankful that a medical professional is finally willing to help me.

10/9/18

Heaven gained another angel tonight. I think of my "2nd Mom, Donna" falling at the feet of Jesus in excitement. Donna was an amazing Christian who truly walked and talked about the life of Christianity. She had a personal relationship with Jesus, and I know she heard, "Well done thy good and faithful servant." When I first heard the news she passed, I was filled with relief. Relief because she was in such great discomfort.  A few minutes later it hit me that I won't see her again until I go to Heaven. She was an amazing second mom to so many people. She had a compassionate heart and helped raise many children. She always would say, "There's our little Kelly!" No matter how old I was, even last year, she said that to me. She met all of my children and my husband. I'm happy Logan gets to see her again.

I worry about my mom. She is going to truly miss her best friend. I wish there were something I could do or say to make her feel better.

10/11/18

Mom is on her way to Indiana to attend Donna's funeral. I'm so glad she is going as I know it will do her good to be surrounded by Donna's loving family.

This day is significant to me for a couple of reasons. October 11, 1919, my grandfather Earl Marvin Oathout was born. He loved to say when his birthday was as his great-grandchildren fondly remember. Even when he was at the beginning stages of Alzheimer’s he could remember that date and say it in his catchy way. I miss him very much. 
The second reason this day is so memorable is that four years to the day I was diagnosed with leukemia. I remember thinking, “It’s my grandpa’s birthday, and he wouldn’t like this.” Four years later I am still asking, “ why me?” And I don’t mean why I was DIAGNOSED with leukemia, I mean, “ why did I SURVIVE and my son didn’t?” I would gratefully give up my life in exchange for his if I could. I’ve lost so many friends to leukemia and so many family members and friends to other types of cancer, yet here I am still here. I promise Logan every day that I will make a difference in the lives of others in his memory. I try and focus on that rather than asking why it’s me here and not him. Thankfully I have a big God who can handle my incessant questions and constant attempts to figure it all out. I’m also fortunate to have good friends and a loving family supporting me and helping me process through it all.

*Tonight I decided to run a few errands. I went to Target which is not my favorite store. My blood sugar dropped, and I felt it as soon as I pulled into the parking lot. No big deal- that happens to me sometimes. I figured I would just get a small bottle of orange juice. But guess what? Target doesn't carry small bottles of orange juice.  I walked painfully clear across the store to look for OJ. My hips were hurting so bad, and I was getting weaker and weaker. I made it to the pharmacy, and I couldn't talk but point to my 47 blood glucose which was displayed on my pump and uttered the words: glucose. Help. The gal got the pharmacist who quickly went and got a package for me. I managed to get my credit card out to pay and sat down in a chair for a bit until it came up a little bit. I was so embarrassed. I kept thinking, "I hope no one I know sees me!" Being out of it is very unsettling, especially in public. I took myself out for dinner and overate. Low blood sugars make me ravenous! Patrick is in Naknek fishing for a long weekend, so I'm not cooking for a few days. I saved barely enough for tomorrow's dinner. I hope no one I know saw me eating tonight. Hahaha.

10/12/18

Today was a day of encouragement for me. I had no less than four people encourage me! God put them all in my path today. The first was my brother who sent me a text to thank me for caring about people. I was astonished because he just donated more zucchini to a nonprofit and I was simply the delivery driver for that. He thanked me for putting him in touch with the director of the homeless committee outreach, but he is the one helping the man who is nearby him and homeless. The second one was a sweet lady named Sarah who told me how much she admires me for what I am doing- going to school and helping people. My first instinct was to downplay what she said, but I heard God telling me to learn to accept compliments, so I simply thanked her. The third was a sweet girl named Laurel. I ran into her in the grocery store. Laurel had lymphoma many years ago, and I played a small part in helping raise money for her. Laurel thanks me for that each time I see her. She is doing so well and is now a nurse and a mother. I'm so thankful she is a survivor. The last, but not least, was Care Tuk. Care has had multiple bouts with cancer and is experiencing a great number of complications. She took the time to send ME a card of encouragement and complimenting me on my role as a wife, mother, and student. I'm amazed at how God sent each of these wonderful ladies in my life today to bring me encouragement and hope for the future. Care calls these needed interventions, "Godcidences" and I must agree.

I visited with Granny today, and she was thrilled that a Becky, a lady from her church, came to see her and show off her new baby girl. Becky is a fantastic friend to Granny and visits her often. She brings Granny such great joy. Pastor Rocky is scheduled to be there this afternoon to visit and give her communion. I'm thankful for these wonderful Christians who care about my Granny.

10/16/18

Twenty-eight years ago we decided our family was complete and Patrick had a vasectomy. I regretted it shortly afterward. Several months later, I remember crying out to God saying, "I know we made this a permanent decision, but I also know you are a God of miracles. I am begging you to make it possible for me to conceive another baby. I need another baby." God answered my prayers,, and I had a baby girl who was born on this day twenty-seven years ago. Meghan is a blessing and an answer to prayer. She has a dynamic personality, she's empathetic, sympathetic, intuitive, intelligent, beautiful, kind, compassionate, and is a fantastic daughter, wife, and mother. Logan once told her, while he was on a significant number of steroids, that she was a mistake. She came crying to me asking if she was a mistake. I quickly assured her she was a blessing and an answer to prayer. Of course, Logan felt terrible about what he had said and profusely apologized to Meghan. We laugh about it on her birthday every year. 

I am beyond blessed to have such a fantastic daughter. I love her so much. She keeps me grounded and she challenges me to be the best person I can be. Thank you, God, for the gift of Meghan.

10/20/18

Mom and I participated in a conference where best-selling authors Jeff & Debra Jay shared their knowledge of how to work with a family member who has an addiction. It was a fascinating insight into a different strategy than most of us are used to. You know the saying, "they have to hit rock bottom?" Well, rock bottom is death. Do we really want them to hit rock bottom? Let me answer my question and say no. Their system is a collaborative process with the addict and the family sober support system. There is no judgment or condemnation and no ultimatums, just firm and healthy boundaries. Yes, a line must be drawn, but it doesn't have to be drawn to alienate or separate your loved one from the family because of addiction. Because this is a collaborative process, the family unit (or preferred support people who aren't family) come together and commits to a full year of sobriety support by having weekly family meetings. I absolutely love this. I have noticed some treatment centers don't encourage family participation. I think utilizing a healthy familial/friend support system is vital for complete recovery. Yes, complete recovery is possible, but as the speaker said today, "My addiction is doing push-ups in the parking lot. After 30 years, I still go to meetings."

On another note, it was an excellent selling day today for the upcoming fundraiser for Joe Trost, a local man who has leukemia. Joe had a bone marrow transplant a few months ago, and he and his family are currently living in Seattle. Money is tight in situations such as this, so my friends Annette and Carol have teamed up again to bring hope and peace to a family in need in our community by organizing another prime rib dinner. Selling tickets is a minor part of my participation. Of course, I will attend and help out the best I can. These ladies are SIMPLY amazing and so full of love for the hurting. I am honored to call them friends.

The pain in my hips continues to increase. There are days where I don't know how I'm going to make it through. The nights are filled with pain and sleeplessness, and the days are filled with pain and sleepiness. I've developed weakness in my legs at times, and it seems as if I am recovering from paralysis. It's hard to explain, but there is often no strength in my legs at all. Yesterday my mom had to help me walk to her door because I couldn't move without assistance. She encouraged me to carry a cane with me, but prefaced it with, "I know you don't want to hear this, but......" I see the doctor on the 29th to go over the results of my latest MRI. I need answers, and I need solutions.

10/22/18

T-minus two days and it's the 20th anniversary of Logan's death. It hit me hard tonight during my online class. I had to answer the question, "What was the defining moment that led you to social work?" I cringed when I thought about how I despised the social worker that we had when Logan was dying. She was not to blame; I was just angry and scared about losing my baby boy.  She wanted us to tell Logan he was dying and I refused. I avoided her at all cost and wouldn't even talk to her. I know she was trying to help. I was left with a sinking feeling for years about that. When I got sick things changed for me. I had minimal contact with social workers surprisingly as they weren't so helpful in helping me. I always felt they kind of left me hanging.  But what changed was a desire to help others in similar situations. I had lived it. My child died, and I was given the diagnosis of a life-threatening illness. I began to pour out love and compassion into the lives of others. I often read the verses 3-7 in II Corinthians chapter 1 , "Praise be the God and Father of our Lord Jesus Christ, the Father of all compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the same 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.  If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer.  And your hope for you is firm because we know that just as you share in our sufferings, so also you share in our comfort."

These verses remind me that Logan lived, mattered, and continues to live in my heart while living in the Kingdom of God. He asked me to read verses to him to help him understand why he was going through his illness and so he could be filled with contentment for God. These verses inspire me to live my life for Christ and to help people in his name. It's funny how I used to despise social workers, and now I am working towards becoming one. God brings things around full circle.

10/23/18

The tears are flowing, but the sobs are under control now. I just heard from my Mayo doctor that despite the bilateral labrum tears, bilateral gluteal tendon tears, increased edema, tendinopathy, and IT Band Syndrome all documented on all my MRI's, that my pain and lack of mobility cannot be explained. In essence, they are saying I should not be having these symptoms. Therefore, surgery is not an option. I feel they are telling me it's all in my mind. I hurt so bad. I have to pick my legs up one at a time after sitting on the driver' sideways.  I need a cane or a walker to walk through my house after sitting for long periods of time. When I walk my dog my speed is about half of what it used to be. If he pulls me, the pain is excruciating in my hips. I do not imagine my lack of mobility or the pain that wakes me up all night long. I can't even get into bed like a normal person. I have to lean over on all fours and gradually maneuver my way into bed. It's a very long process. When I need to turn over at night because the pain is so bad on one side, it's another long process. How can no one figure out what is causing my pain and immobility? How can Mayo Clinic, of fall places, not come up with a solution? I am desperate for relief.

10/25/18

Yesterday was a really crappy day. I was at my practicum placement and managed to block my feelings pretty well. I even took Ringo out on a walk afterward since it was so warm and sunny. Things were going well until I got a phone call with some very disturbing news that was making my heart ache. News that I don't' want to discuss right now with anyone. Patrick and I sat down to watch a movie together. Logan loved movies so we decided watching one would somehow honor him. Soon, I got a message from someone that literally pierced what little bit of "togetherness" I had left. My friend was dying, and I was asked to come to see him. He hasn't been awake since Tuesday morning, so I was unable to really say goodbye. I told him how much I cared about him and how much I was going to miss him, but I didn't say what was really on my mind. I didn't thank him for being there for me as I have gone through my journey. I didn't tell him that sharing our feelings about our cancer journey made me stronger because I had his support. I didn't tell him I think he's one of the funniest and amazing men I've ever met. I didn't say enough to this man who is soon going to see Jesus. He is a man of great faith, and I have no doubt Jesus himself will be there to greet him. I wanted to tell him, "When you see my son, please give him a huge hug from me and tell him I love him."

10/26/18

Yesterday I learned my friend John passed through the gates of Heaven. My heart felt good at first as I know how exciting that must have been for him. Hallelujah, another soul gets to see Heaven. But then my mood changed, and I was again filled with sorrow. I chose to take a day of self-care. I watched a movie and visited with a friend. My energy is spent. I cannot focus on anything right now. Two days full of bad news is overwhelming. I had planned to leave for a long weekend at the cabin, but John's service is Sunday so I will stay here of course.

10/27/18

Wal-Mart is usually the place one runs into people they know and today was no exception for me.  As I was walking out, I ran into a former inmate at PCC. He was one who was always respectful to me so I felt comfortable greeting him. Often former inmates don't want to be reminded of a staff member who had authority over them, so I never presume they will want to talk to me. However, this gentleman wanted to chat. His eyes got really big when he saw me, and he said, "I am so happy to see you are doing okay! We were very worried about you." I was touched that he cared and told him I have been in remission for 3.5 years and he said he was very happy to hear that. He went on to say that he, and other inmates, made me get well cards and asked the staff to send them to me but the staff refused. He said, "I told them we weren't asking for your address, we just wanted you to know we cared!" He also said he told them they could simply take a picture of the cards and text it to me but they refused. He seemed to be still bothered by the fact those cards did not get to me. My heart was so touched, and I told him, "That means so much to me that you cared enough to make me a card. Even though I never received it, I am honored by your effort." I walked away with the feeling that I DID make a difference in the lives of the prisoners I supervised. I am thankful for God's timing in me seeing this newly released man.

Most of us are prisoners in some way. We are held captive because of our thoughts, actions, and failure to create change.  When we remain stagnant in our growth, we are held captive, and our resources seem limited which prohibits change.  This often happens because of low self-esteem due to past experiences with people or situations. When we feel vulnerable, we can either use that feeling to decrease efforts to succeed, or we can use that feeling of vulnerability as an opportunity to increase positive changes for growth.

How does God see us? God sees us as wonderfully and fearfully made in his very own image. If we are created in the image of God, then we must be special! We are unique creatures, and we have our own personalities, talents, and abilities that have been selected by God himself.  We use what we got because God designed us just as he desired us to be. When you feel as if you are just "existing" remember that God has a plan for YOUR LIFE!  Allow him to use you in mighty ways. We all touch the life of another person. Let it be God through us.

10/29/18

John's memorial service was beautiful. The minister who spoke did an eloquent job of summing up the characteristics John exhibited.  The room was packed with people who were impacted by John's Godly character.  John was fair, honest, compassionate, caring, personable, and so much more. He had this wonderful twinkle in his eye, and he was full of mischief.  He had a wonderful sense of humor.  He used to come to sit in my office when I was working at Palmer Correctional Center, and we would discuss the joys and tribulations of raising teenagers, talk about diet and exercise, and just visit.  John spoke proudly of his wife and kids, and I got to know his parents and siblings through his stories.  One day he was proud of himself as he greeted me with "Hey, Calamari" as he plopped down in the chair.  I looked at him and scowled saying, "I've heard it before, John, you aren't that funny!" But I did think he was funny because he said it with a mischievous grin and I knew he was just kidding around.  If you say Kelly Marre quickly, it does sound like calamari.  I didn't mind him teasing me.

John and I talked a couple of times a month and shared our war stories.  We shared our hopes and dreams and our fears and desires. We joked about the weight we both lost and how neither of us had a butt left. (I'm gaining weight now and wish I could tell him I'm worried my butt will get TOO big now!) We talked about our sadness of having to leave our jobs and our lack of purpose we felt. We encouraged each other that this was only temporary. We boosted each other's spirits when one of us felt discouraged. We talked about God a lot, and both shared how we trusted him even if we don't understand why we were in our situations.  I'm going to miss my friend John. Whenever I asked, "How are you doing, John?" He would reply, "Well, I''m still breathing and haven't kicked the bucket yet." The Heavens opened, and the angels rejoiced when John arrived on Thursday.  I will always remember my friend John and look forward to seeing him in Heaven.

This morning the news was full of distressing events.  A Jewish Synagogue was attacked and eleven were killed.  A plane crashed into an ocean while carrying over one hundred passengers.  There were multiple shootings in Alaska- one at a police officer who thankfully wasn't injured.  Bad things happen all the time and we never know when it's going to happen to us.  I can't urge people enough to have your hearts prepared for the day that will be your last. We are all going to die at some point. Be ready.