10/2/19

Good grief this fall is whizzing by. Before we know it, it will be the end of the year, and this means my fall semester will be over and all my papers are due. I want that to happen, yet I need a bit more time. Time, please slow down!

The girls just spent five nights with us while their parents took a much-needed vacation. Now I need one!  They were wonderful, and I miss them. They are just so busy- busy little demanding bees- buzzing around telling me what they need right NOW! HA!  THEY ARE CUTE.  It seems so quiet here. Hmm, maybe I can do my homework now?

Yesterday was crazy. I got Ollie off to school (someone thankfully picked her up for me) and then got the littles dressed.  We went to Granny's to give her her medicine and fill out a check for the lady cutting her nails for her. Then we went to my chiropractor appt only to find out that yes, my shoulder is very messed up......Of course, I already knew that.  I need to go back to the specialist and get an MRI. I don't want another one, but I think we need to see if it's torn.  Then we went to Fred Meyer to get some things, and then I picked lunch up at McDonald's. Yes, I know it's not healthy....Granny loves McDonald's.  I took it back to her house, and we ate together then I cooked up some burger for her. Then I got my medicine and picked up a couple of pizzas for dinner.

Yes, another unhealthy meal. Then we drove out to Sutton to get Ollie, went to Meghan and kirk's, and I made pizza and cleaned up a bit for them. My blood sugar dropped to 52, and Ailynn and Boe were fighting over who was going to check my blood sugar. I ended up checking my own (and discovered it was 52) because I knew I was in dire straights. Ailynn sobbed and sobbed because she wanted to do it. How crazy they fight over that!  The parents got home about six, and I went home thoroughly exhausted but pleased that I got to spend so much quality time with my grandbabies.

Now I have to leave for a meeting then come home to do my homework, then a medical massage, more homework, cook dinner, and four hours of classes tonight. God, please help me!

10/3/19

My heart rate continues to be extremely elevated.  It's 108 right now. I'm afraid it's going to stop beating because how fast can it go? It's been this way the past couple of weeks.  I have too much stress in my life.

Tonight we are going to the Garden of Reflection to install Logan's memorial plaque.  

Logan Joseph Marre

6-24-87 to 10-24-98

Loved Beyond Measure

10/5/19

It was a great gathering with my parents on Thursday at the Garden of Reflection.  It was a bittersweet moment for us to see our precious boy's plaque on the memorial wall.  We are thankful that he will be forever memorialized here on earth but are especially grateful that we will see him again in Heaven.

I invited my parents to go out to dinner with us afterward. I had been carrying around a gift certificate for a free steak dinner for months.  I had gotten it at a silent auction that was a fundraiser for someone with cancer.  Little Beemer, I think.  So finally it was time to use it.  However, it was at Palmer Bar.  Now I was a bit uncomfortable taking my parents into a bar.  It was loud, super loud, and most seemed more interested in drinking than eating.  My parents were good sports.  We three were drinking water, and we ordered our food. It was probably 45 minutes before we got our salads and another 30 minutes maybe before we got our steaks. Mom ordered a cheeseburger, and hers came about five minutes after our steaks. Patrick ordered his rare, and it came well-done.  I traded him as mine at least had a bit of pink in it.  The later we were there, the more uncomfortable I was because I knew my parents were uncomfortable.  I think that maybe it wasn't a good idea!  The waitress was really nice and apologized. She gave my parents a coupon for two free cheeseburgers and did the same for Patrick and I.  Mom handed theirs  over to me and said, "we won't be coming back." So, I have four free cheeseburgers to eat.🙂  Moral of the story:  Do not take your parents to a bar.

I went to OT at 0700 yesterday before I headed into Anchorage for a day full of meetings. I spent five minutes on an exercise machine.  When I got off, I was having a bit of trouble breathing, and my heart was racing. I had Shelly check my heart rate, and it was 106.  If this keeps up, I'll have to go to the doctor earlier than planned.  I have also been having excruciating leg cramps at night. Last night I was screaming loudly.  Thankfully no one was in the house but me, Ringo, and Oreo.  We should probably have my potassium levels drawn too.  It never ends.

I have a full day of writing to do for school, so I might as well get started before I am so tired I need to take my daily nap. 

10/10/19

Five years ago (tomorrow), I was in the hospital on my grandfather's birthday (October 11, 1919) and told I had leukemia.  Five years ago, my life was once again turned upside down as I struggled to process the news.  Five years later, I celebrate the gift of life.  I rejoice I beat the odds of 25% survival rate in five years.  I am not only alive, but I am also in graduate school, a grandmother of three, a mother, a wife, a daughter, granddaughter, sister, friend, and more.  I may have some complications, but overall, I am doing okay, and I'm thankful, so thankful for that.

Tomorrow is a day to celebrate, but Patrick is out of town again, and I have a busy day with my practicum.  Plus, I have an oncology check-up.  I am still waiting for my blood test results, but I'm sure things are okay.  My grandpa would be 100 this year! I wish he were still alive. I miss him.

My parents leave in a week, and I'm not happy about that. I miss them already, and they haven't even left. We have an early Thanksgiving dinner at my grandma's next Saturday.

10/11/19

Five years since diagnosis.  I still remember the shock on Patrick's face as the doctor said, "I'm sorry to tell you this, but we think you have leukemia too, but not the same type as your son had."  Today I head my oncologist say, "Around this time you can get secondary cancer.  But the good news is that the secondary cancer is usually easier to treat.  And, we need to do an echocardiogram on your heart to rule out heart failure, which can also happen after someone has done full-body radiation."

Even though I didn't get to celebrate with anyone, I did get to hang out with my parents a bit when I picked up Ringo from them. They provided nanny duties for him yesterday since I was gone all day.

I got to say goodbye to my friends, who are packed up and ready to leave Alaska.  I am thankful for cell phones and social media so we can stay in touch.

The other day I spoke with a lady from Wasilla who was told they think her 3-year-old has leukemia.  That was a hard conversation to have, and I worry about their family.  Please pray for this little boy as they run all the tests to figure out for sure and then to arrange for treatment.

10/13/19

Recently I had read an article about the decreased interest in helping those who have problems that might be perceived as "self-induced."  The author gave the example of how, when she got divorced, the members of the church failed to support her emotionally or even by merely delivering a meal.  When a friend lost her husband to death, the author watched the same church members bring her casseroles for months.  While she was happy her friend was eating meals, having people help her around the house and repairing her car, she wondered where the church members were when she was going through her grief over losing her husband through a divorce. 

The article got me thinking about how we ignore families who have a family member with a substance use disorder (SUD).  We often don't ask about them, we don't visit the addicted one in jail (as Jesus commanded us to do), we don't reach out to them or their family to see if there's anything they need, and we often forget about them.  How is it that our churches focus so much on mission work in other countries, but fail to provide fundamental support to someone with a SUD?  Where are the prison ministry teams?  Why do we not care about our addicted members in America as much as we do for the sick in Africa?  Don't get me wrong- I believe in mission work. But also i think the mission should start right here at home.  We have a societal (and religious) obligation to take care of our community members who are suffering.  We must bring them the Word of God in prisons.  We have a responsibility to reach out to hurting families. 

 It's something to think about.  How are you doing your part? How am I doing my part?  Are we showing the love of Jesus to all who hurt? Or are we choosing who we feel deserves our help?

10/17/19

Yesterday my youngest child, my only daughter, turned 28. She wasn't thrilled when I called her at 0550 to sing her happy birthday. Neither was her husband.... However, in my defense, I had seen she had acknowledged my happy birthday message on Facebook, so I knew she was awake.  She is truly a miracle as I prayed fervently for another child after Patrick had a vasectomy.  I instantly regretted that decision and wanted another baby so badly.  God made it happen, and we have been delighted with her ever since.  She's a wonderful woman, wife, and mother, and indeed a wonderful daughter to us.  I had a little over an hour free yesterday, so Mom, Dad, Casey, Meg, Ailynn, and Boe came over for pizza and cake.

Yesterday I had a breakfast meeting in Wasilla.  Just before I got there, a man who is homeless went into the restroom. The waitress said that he took an entire bowl of creamer in there with him. It broke my heart to hear that.  She asked me to tell him she bought him a breakfast sandwich so he should grab it before he left.  When he came out of the bathroom, he had to walk past our large group, and he was scurrying. I quickly stood up and said, Sir! He stopped for a second, and I tried to tell him about the sandwich quietly. I didn't want to embarrass him. My heart still hurts that someone is so hungry they have to drink creamer in the restroom at a restaurant.

10/18/19

I have had a rough couple of nights in class this week.  Maybe I am just weary of all the work and the lack of sleep I have, which is causing me to be more irritated with a few of my classmates.  I quickly learned last year that I don't have much in common with most of them. First, I am the oldest in the program, second, I have lived a full life and have been a professional before this program, third, I have a lot of knowledge about grief, going through cancer, having a child with a substance use disorder, and many more things.  Most of my peers in this program are idealistic and think that the way to solve the world's problems is to be angry and demand change.  I am fully aware that demanding change in a disrespectful way gets us nowhere.  I feel that I am a minority in this class, and very few of them value my opinions or thoughts. There is one particular student who shuts me down every time I say anything by telling me she disagrees with me. It's gotten to the point where I don't want even to talk. Last night the professor asked us if we felt guilty for being white and having "white privilege."  I believe everyone in the class (we are on camera in this online program) raised their hand but me.  I was just (internally) shaking my head. Why should I feel guilty?  I do a lot to help others. Why should I feel guilty that just because I am white and I live in a house and have food?  The Bible teaches us that we need to let go of guilt and shame.  Do I feel compassionate? You bet I do!  That's why I carry food (and sometimes buy meals) for those who are homeless.  That's why I spend time talking with the lonely or with those our community shuns.  That is why I reach out to people in my community who have been diagnosed with cancer and try to help them navigate the system. That's why I visit sick people in the hospital.  I do it because I care. Not once do I think, "Damn, I'm better than you because I am white and have a little bit of money in the bank." "I'm better than you because I'm in college." Why am I the only one who thinks it's okay to be appreciative of what I have and not feel guilty about it? I wonder if those who feel "guilty" donate their money and time to the causes or if they stand on their platforms and preach about how insensitive and horrible white people are.  Why should I be blamed that the men who signed the constitution were wealthy white men?  Can I do anything about that? Can I change anything regarding history?  The one particular thorn in my side classmate intimated that we should feel bad about the constitution signing by white men, and everything else in the world that doesn't represent someone of color, transgender, homosexual, or female being at the top of the chain.  Do they think my life has been easy because I’m white? Leukemia doesn’t discriminate. My son and I both got it despite the fact we are white. My younger son developed a substance use disorder even though he is white. How did our race protect us?

Ironically, most of the people in this class are white.  They judge me because I don't agree that no one in the world should be wealthy.  The majority believe in socialism and feel our Nation is built on capitalism.  The one student said there should be no billionaires, and no one fairly earned their wealth, and if they inherited it, they don't deserve it.  I disagree. I think if people work hard, they have a right to have wealth. If they invest well, they have a right to have wealth. If they inherit money- then good for them!  Why should I care?  I do believe people with money have a moral obligation to use their money to help those in need. I do think they should pay taxes and help fund programs.  I love the multitudes of wealthy people who do have foundations that help those in need.  But who am I to tell someone else how they should think, feel, or believe?  Honestly, I cannot wait to be done with this program.  I have been in the real world, and I am okay with who I am.

10/23/19

Patrick and I delivered my parents and Casey to the airport on Sunday night.  They had a crazy amount of luggage and ended up forgetting one piece at the Austin Airport- the one with my mom's medication. They were able to make the long trip back the next day, but some of her medicines were not in her bag, unfortunately. Hopefully, she can get new prescriptions.  What a way to start the winter transition.

Last week was a very rough week for me, and I had several anxiety attacks that are not common for me.  I'm feeling much better this week and hope that I'm back to "me."  I didn't sleep well last night as I woke up with a gazillion things going through my mind. I have two classes tonight- one is a graded simulation activity.  My other class ends at 8:45, and I will have 1.5 hours to shower, do my hair, get fresh clothes on, and drive to the airport. I leave about 0100 tomorrow for Minneapolis- the Ambassador Leadership program with Be the Match.  Tomorrow is the 21st anniversary of Logan's death. It's a hard day to travel, but I am honoring Logan by attending this conference so I may learn how to better advocate for those who have blood cancers.  I'll also get to visit with some MN friends- even one IA friend who happens to be there at the same time.

This week ALONE, I have had two friends tell me their husbands want a divorce.  One is just a young girl in her early 20s and has only been married two years. The other is a woman I met at Mayo after she had her bone marrow transplant.  My heart breaks for the two of them, and I wish their husbands would be willing to go to counseling.  Too many divorces.  Life is not easy.

10/24/19

Today I think about the worst day of my life. My son, Logan, seemed to be doing poorly, then he perked up. I remember being scared, hopeful, defeated, frustrated, and confused. Was this the day he would take his last breath? I read him the final chapter of his Goosebump book, "The Boy who Loved to Fly." I allowed the nurses to continue administering his harsh medication because I was convinced he was going to live.  At one point, he ripped off his oxygen mask and started walking across the room towards my friend Dorothy. He said, "I want to walk where the light is" (I can't remember his exact words) I remember feeling scared, and then it dawned on me that he saw the light from heaven shining down on him.  I didn't want him to go. I turned my back on him to go to the restroom when he took his last breath. I cried, screamed, ranted.... I was beyond defeated. My baby was gone, and I didn't witness his last breath. My back was turned. I had told him I was going to the restroom. I know he waited until I turned my back before he gave up his spirit. I didn't let anyone call my dad earlier because I knew it would be too hard on him to see Logan take his last breath. I feel guilty about that. I cheated my dad out of being able to say goodbye.  There are so many things I would do differently. I wouldn't have let them give him the medicine, and maybe I would have told him the doctors said he was dying. I refused to do so because I didn't want him to be scared. Perhaps it was me who was afraid. Did I cheat him from saying goodbye to all who loved him?  I would give my life for him if only I could have.

I have never met a child so brave and beautiful. He was a beautiful soul- a wise man in a child's body.  His smile lit up the room, and his eyes shined brightly when he smiled. He had these adorable freckles on his face that made my heart leap with joy whenever I saw him. He was so compassionate and kind to children, and he blew adults away with his knowledge and intelligence. He was easy to get along with and my best little buddy.

Today I am in Minneapolis to prepare for the Be the Match Ambassador Leadership training.  I am here to honor Logan and to bring awareness to others on the enormous need for bone marrow donors. I honor you, Logan, my son, in my advocacy work related to blood cancers.  Run, play, enjoy life in Heaven Logan. I will see you as soon as God is ready for me. I can't wait to see your smiling freckled face, my baby boy.

10/26/19

The conference has been incredible. The most amazing men and women have surrounded me.  Some have given the gift of life to others by being a bone marrow donor. Others have been the recipient of a donor, through transplant.  Others are there because they were caregivers for a family member.  All had a unique and beautiful story. I am the only one there this weekend that has lost a child to death and had a transplant myself. I am the only one there that lost a child from a transplant-related complication.  I appreciated it when a few people came up to me and hugged me and told me they were sorry for the loss of my son.  I shared my story on video on Friday. Boy, that was hard. I was asked the most difficult questions such as, "what was Logan's last day on earth like? Did he know he was dying?  How did you cope after his death? How did you tell his siblings?"  I"m surprised I was relatively composed. It was tough.

Tonight I had dinner with two other bone marrow recipients, and amazingly, they are both social workers!  I was in awe sitting with them knowing in less than a year. I will have my social work degree, and the three of us will be social workers who had a transplant. I wonder if I should start another support group," social workers who had a bone marrow transplant- join our group!" hahaha

Patrick got to keep the grandbabies all night. Lucky duck! I miss the little darlings. I will get home at about 0100 Monday. Thankfully, I don't have anything going on until Monday afternoon.

10/30/19

Ailynn turned four years old today!  We celebrated last night since I had classes tonight. It's a bit embarrassing to ask everyone to change their plans to work around my schedule.  I am thankful that every person (especially Meghan) was willing to accommodate me.  I look forward to the day when I have a job and no class to attend.  Ailynn was happy as can be. Meghan and Kirk bought her this adorable ride-on unicorn.  The thing glides across the floor by simply raising and down as one would naturally on a horse. She had so much fun with it, and it was her favorite gift. It felt like I hadn't seen the girls for a couple of weeks. It's probably been at least a week between visits- probably more than that since I had seen Ollie. Her being in school interferes with my visits.

I had lunch with Granny yesterday, and it felt so good to see her. I was only gone three nights in Minnesota, but it felt like I had been away from my family for so long.  Since I have been home, I have scrambled to try and catch up with schoolwork. I have six weeks left in the semester and six papers left to write!

I talked to Casey today, and he told me about his new job in Texas. He has some plans to go kayaking and bought a kayak today. I sure hope he meets some good people to hang around with and enjoys himself and his exciting opportunities

The next several weeks are going to be pretty intense for me.  I'm just trying to stay afloat. My heart rate remains high, as does my stress level. This cannot be good for me.  I can do this! With God's help, I will do this.

10/31/19

You know when you are going to a very liberal college when the classes get canceled because it's Halloween.  Really? That's ridiculous. But at least I'll have some free time to work on my papers.

I've come to finally realize that people are going to disappoint us and hurt us.  I have heard this message in church all my life, and I wish I had listened more carefully about how to rely on God when people disappoint and hurt me.  I have got to stop reacting, and I also need to learn how to let things go and stop second-guessing myself about what I could have done differently.  I am my own worst enemy, and I frequently struggle as I wonder what I said to make people ignore me, shun me, or just cut me out of their lives.  I've got to learn to love myself and be okay with me.  I know that I do almost everything with good intentions.  If people don't accept me, than it is their problem and not mine.  I must work on my perfectionism curse. I can never be perfect, and it's okay when I make a mistake. I'm going to repeat this a gazillion times until it sinks in.

I think I am having a mental health breakdown. I cry at the drop of a hat, and I just found myself on the floor wailing over a paper jam. To clarify, it wasn't only one paper jam- it was several in a row. It started when I realized I had to include a literature review for one o my upcoming papers. I am kicking myself for not having this done in advance. I don't have a clue as to what I am doing half the time. I am writing a single subject research design project that incorporates data from a friend who wanted to decrease her stress level over six weeks. I have mountains of paperwork to go through. I don't know how to write this paper, and when I saw the literature review, I lost my marbles. Then I tried printing off articles, and the printer jammed over and over. Each time I fixed it, it would start over with the same printed papers and jam in the same place. It took me about 35 sheets of paper to print out the whole 11 from the article. That sent me over the edge.

Before that, my battery was dead again this morning. For the past two weeks, it's an almost daily occurrence. Usually, I can stick the charger on it, and it starts right up — not today. Today is the day I arranged a meeting with five people. Yes, "I" arranged the meeting, and I was late to it. I had a meltdown on the phone with Patrick, and he came home from Anchorage to trade me vehicles so he could take mine in to get the battery checked. I cannot say enough about my husband. I don't know how he puts up with my aches and pains, complaints, and crying.

I talked with someone at my conference about my ligament and tendon problems. I spoke with two people who have similar issues. They both were diagnosed with GVHD. I have asked my doctors repeatedly about this, and they all say, "I cannot help you." I sent my orthopedic physician at Mayo the paper with the side effects and the tests that can be done. She responded with kindness, telling me how sorry she is I continue to have problems, but also said, "I can't help you." I'm frustrated, angry, and completely overwhelmed.  

11/2/19

Friday, I had the continuation of training for my practicum. I didn't sleep well that night.  I was obsessing about the school, and I had a strange pain in my stomach.  I got out of bed about 0500 and wrote down some more things in a paper. I continued to feel funny and decided it was best if I skipped my double-punch Friday's decaf skinny latte and elected to eat toast. I made it one hour at the training before I had to leave. I went home and went to bed, and the pain started to get worse.  As the day went on, it crossed my mind that I should go to the doctor.  My primary provider doesn't work on Friday afternoons. I'm used to others not taking me seriously and undoubtedly unsure of how to treat me, so I was holding out thinking it would get better.  Unfortunately, it got worse. I knew I needed to go to the hospital, but that silly, stubborn streak was strong, and I avoided it. Dorothy insisted I call her if I needed to go. What did I do? I drove myself to the ER at 0230. I drove 40 mph hour because I could barely sit up. I was getting sicker and sicker.  I was hunched over at the waist when I got out of the car, and the 50 feet to the door seemed overwhelmingly daunting.  A security guard got me a wheelchair, and every bump he hit about sent me over the edge. I couldn't even talk I hurt so bad. All I could say was, "I need help." I finally choked out the symptoms I was experiencing and gave a brief description of my medical history. I was asked what my pain level was on a scale of 1-10. I said a 10.  She asked the standard question, "Are you suicidal?" I told her I wanted to die but assured her I wasn't going to kill myself.  Finally, they gave me some non-narcotic medicine for pain, and 20 minutes later, I was ready to live.  The CT scan showed a great deal of inflammation in my abdominal cavity.  All parts, stomach, intestines, and even my appendix were inflamed.  Graft vs. Host Disease (GVHD) reared its ugly head again.  I had tapered off the medication for it five days prior.  

The local hospital did not feel qualified to treat me based on my complicated medical history. They sent me by ambulance to Providence. Right now, my pain is at a 2.  They are dosing me with heavy steroids and antibiotics and are giving me pain relief around the clock.  I have asked them a few times to call Mayo to discuss GVHD treatment, but as of yet, they have not done so, which greatly disturbs me.  If I felt better, I'd get on a plane and go to Mayo for treatment.

Patrick was working at the cabin, and I was keeping this from him. Meghan assumed I had told him, so she talked to him about it. He was not happy with me for my secrets and bless his heart, and he came home right away. I have filled with guilt again for interrupting his life because I am such a complicated mess.  He's an amazing man to put up with me.

11/3/19

I remain a puzzle to the treatment team at Providence. They will be calling my transplant doctor at Mayo today, along with my Anchorage gastroenterologist, to get some tips on what to do with me. The medicines must be working because my pain has stayed down to between a 2-4.  I have only had clear liquids since Friday afternoon, and I'm not even hungry, but the thought of food sounds good. Even the broth hurts my stomach, so I probably will resume eating slowly when I have permission to eat normally.

My hematocrit and hemoglobin are low, and the doctors didn't even tell me. I am concerned. I asked the nurse for my results after they left as I didn't think about it while they were here yesterday.  If it's down, even more, today, that's not going to be good. I wish I felt well enough to fly to Mayo.  There's the talk of releasing me today or tomorrow. I am not sure I'm comfortable with that if they don't have all the answers to what's truly going on. I also hate being here. I can't sleep. I was awake at 0115 yesterday morning and only took a 1.5-hour nap. Today I woke up at 0200 and woke up on the hour before that.

Ollie came with Papa again yesterday to visit me and wrote, "Grammie, I love you, Olivienne Mae McNiven. and wrote "Ollie" with a heart next to it. I wouldn't let her erase it, and I smile every time I see it.  She loves her grammie.  

My stress level is through the roof. I have papers due, and here I am in the hospital bed unable to concentrate on anything because I'm just so frustrated and depressed.

My local oncologist talked to my transplant doc, Dr. Hogan today He told her I need to take 120 mg of Prednisone, and six milligrams of Budesonide (another steroid) plus a couple of antibiotics, and a Pantamadine treatment (I hated those after transplant) and I  think I quit listening. I was so bummed. First of all, I am vain. The steroids are going to make me gain weight. I've never been overweight, and I already hate what the treatment did to my body. It's a real thing for me. My face is going to get huge, and I'm afraid I'll repulse my husband. It sounds so petty, but I have always taken care of myself.  The steroids will increase my unstable, volatile mood too. I'll cry even more. I've been crying since they put me on steroids since I have been here. Oh heck, I was crying before that too because of stress.  Dr. Stewart told me that GVHD could cause my stomach and intestines to rupture, and it can kill me.  I knew that but never thought I would hear someone say that it could happen to me. Usually, umbilical cord transplants have little GVHD, and I had been fortunate only to have a bit. She said Mayo wants to see me in a few weeks too. I'm going to beg off until December. I have to finish this semester!

Right after I was reeling from that news, I received an email from the SW director at UAA. One of my classmates had breast cancer, and none of us knew. She died. I'm devastated. The last time we communicated was September 21st. We didn't have any classes together this semester. I knew she cut back to halftime, but she didn't tell me why.  I wish she would have shared with me so I could have comforted her. I feel so guilty because I didn't reach out to her since then to ask how she was. Well, I did in October, but she didn't respond. I almost sent her a text the other day, and I forgot.  I wonder what kind of friend I am. I'm only focused on myself.

I hope to get out of the hospital tomorrow and try and get back to normal. What is normal, anyway? I don't have a clue......

11/7/19

I got discharged from the hospital late afternoon on Tuesday. I got carsick on the way home and collapsed on the couch. When I woke up, Patrick let me know the little neighbor girls had hung a welcome home banner across the street from me, and I was able to see it in the morning.  I have been feeling odd.  The high doses of steroids are making me feel so strange. I'm very fatigued. I have tried to go about my days and pretend all is good. However, that backfired on me today as I overdid it and then became extremely nauseous.  I had to sleep a bit before my first class, and I have another one in just a minute. This isn't easy, but I am determined. I'll be going to Mayo the first week in December so now I have three weeks to write all of my papers. Talk about pressure. I can do all things through Christ who strengthens me.

11/8/19

I made it through both classes. Thankfully, my instructors allowed me to be off-camera. Trust me; no one wanted to look at me.  I never showered or dressed yesterday and had no make-up on, nor did I fix my hair. I didn't care how I looked.  I realized during class that I had a rough draft left to turn in before midnight. I thought it was due today. I had to work on that and submit it while feeling like I was going to vomit at any moment. But I did it.  This morning I woke up at 0200 and have been working on some school work and some things for Granny.  I also registered for my LAST semester of grad school. What a cool thing, that is!  While I will continue taking training, this is the furthest I am going for as far as a degree goes.  I have had a difficult time getting through schooling while recovering from leukemia and transplant, but it will be the most successful professional experience of my life.  IT will be a huge accomplishment, and I am so grateful for the opportunity to take part in this.

Meghan brought Ailynn and Boe over to see me briefly yesterday.  They were thrilled to see their Grammie.  Or Mimi, as Boe calls me.  I had bought them some balloons and Halloween hot chocolate for Halloween and never did get to see them, so they were happy to get their little gifts. I miss Ollie so much.  With her being in school, I don't get to see her often.

I am staying home today again- in fact; I will all weekend.  I really need to recover. I feel weird from the steroids, and I'm nauseous and exhausted.  This will be a weekend of healing and schoolwork.

11/9/19

At least I slept until 0300 today.  Sporadic sleep anyway.  Usually, I am hot at night, but I froze all night.  I woke up listening to myself having a conversation with someone. I am unsure who I was talking to, but they probably weren't interested since they weren't there!  Patrick is at the cabin all weekend, and it's just Ringo, Oreo, and I.  I'm trying to motivate myself to finish one of my papers today. I got a good start on it yesterday. I want to finish it and then start the other one that is due in less than a week!  Two papers today would be fabulous! Tomorrow I can start on another.  My goal is to finish them up the week of Thanksgiving.  I don't have a choice since I'll be leaving December 2nd for Mayo.  My practicum will be wrapped up by the 21st of November.   I hope to be able to continue to heal at the cabin.

I feel the puffiness of my face starting from the steroids.  I can't stop touching my face as I know I'm going to soon look so different.  I have some critical practicum related meetings coming up, and once again, I am supposed to be wearing "Bane" my dreaded mask.  I HATE that mask so much. I had to order a new one, and it's not here yet but should be in a couple of days. I plan to visit Granny this morning, and I do think I'm going to do something stupid in stopping by to see a friend who is doing a craft fair.  It's close to my house, and I can always put on one of the other types of masks to run in and say hello and offer some support to her. I'm starting to feel a bit more normal, although I am still very weak.  I continue to have a suppressed appetite, too, which is probably a good thing since I'm on so many steroids. The last thing I want is to gain 100 pounds.

My mom is going to meet me in Rochester on the 2nd, and I am so happy about that. I miss my mom, and although I am used to going along to my check-ups, it's going to be great to have her there for support.  I'm a bit scared truthfully. I hope to hear only good news- the GVHD is under control, I can get off the steroids, and I have a long healthy life ahead of me.  God is faithful, so matter what; it is okay.

Yesterday we had a small online memorial for Shelley, my classmate who just passed away.  Only one other student besides me, along with two professors. I think some of the classmates went to the actual service, but due to my sickness, I was unable to attend.  Shelley was an accomplished sailor, a multi-marathon runner, a mother of two girls, a badass for doing grad school while fighting breast cancer, a thoughtful and very private woman.  I wish I had known her better. I didn't realize until I read her obituary that our birthdays are precisely three days apart!  All along, I assumed I was the oldest person in the MSW program.  Now I'm sure there is one other lady who is older than me who just came into the program.  It's nice not to be the oldest. There was a day I was usually the youngest, and that was a much better feeling.  At least I have all this "old woman experience."

I got the good news yesterday that my friend's brain tumor was successfully removed in 1.5 hours completely intact!  This woman has had more miracles of anyone I have ever heard of.  She is a walking, talking, the superstar of wonders.  Thank you, Jesus!  My other friend is in Seattle this weekend, getting a second opinion about her brain tumor.

11/10/19

I have completed three more papers since 0200.  Kelly, on steroids, is pretty strange. I can't just sit. I have forced myself to lie down a couple of times today to rest even though I cannot sleep.  I feel as if I am crawling out of my skin.  I also finished the last journal post for one of my classes.  I have edited two classmates' papers.  I really should clean the house, but honestly, the physical stuff made me nauseous the other day when I tried it. I wore myself down to the bone, and I didn't do a whole lot.  Lame excuse isn't it!  I'll see how I feel in the morning.  There is still one more paper to start.

I made an omelet and took a plate for Granny over and sat and ate with her.  I also took my pills over to take when she took hers. I thought it would make her feel a bit better about all the medicines she has to take. I take quite a few more than her at the moment.  I'm also going to go over tomorrow to give Meghan a break since Kirk is off work.  I don't have much else going on since I am supposed to be staying close to the house due to my severely compromised immune system. 

I spoke with Casey today, and he's full of enthusiasm and hope for a new career.  He was accepted into the volunteer fire department, and they will even pay for some training.  He seems to be on the path God has planned for him.  He went to a young adults group at church tonight and met a few people. The new environment seems to be a God thing for sure.  I'm going to keep praying all fall into God's alignment for his life.  I am encouraged.

11/12/19

Midnight and I know I have to try and get some sleep.  I made myself stay in bed till 0400 and rest even though I awakened at 0315.  I got maybe an hour nap today which was a good thing.  I don't seem to be as cloudy-headed today and I'm wondering if my creative juices are depleting because I have no interest in starting my last paper.  If my professor would open the link to submit paper 3 for my leadership class that could be one more down!  I also must submit my research study paper but I am waiting for my mom to edit it. I have already had three classmates review it. We like to go over each other's papers to ensure good quality work.  That leaves me with one more huge paper to continue editing, one to begin, and one other smaller to edit and submit.  I'm almost done!  The relief I feel is surreal.  I have gone to visit Granny for the past three mornings and will go again tomorrow. I'll also get to see Ailynn Boe, and Megahan which is a very large bonus!

Patrick will be back from working on the cabin stuff tomorrow. He had a large piece of equipment break down and spent the last two days fixing it.  The guy never seems to tire and certainly never complains.  I have a good husband and I am thankful for him.

Sleep is awaiting me.  Please, God, let me get five hours of uninterrupted sleep tonight to rejuvenate my brain cells. I got 2.5 hours......

11/13/19

I think I fell asleep around 10 and woke at midnight.  It is now almost 0300.  I may have been able to sleep longer but wouldn't you know that my insulin pump started going off loudly.  My sensor told it my blood sugar was low.  A check showed that wasn't the case.  I cannot believe I am still functioning on 2-3 hours of sleep per day.  At some point, my body/mind is going to crash and I fear it's not going to be good.

The one good thing about taking steroids is my self-confidence has increased dramatically.  It is odd but the other night I was sitting there and thought, "Heck yes, I am a badass!"  Look what I have been through and I keep going.  The day after releasing from the hospital I drove myself to a practicum meeting. I am doing my school work, I think I'm doing a good job writing, I am continuing my telephonic meetings from practicum, and I am making plans for services I am helping supply related to my practicum.  Additionally, I visited Granny four days in a row and even fixed her food and picked some up.  I am not just some lazy person sitting around feeling sorry for myself. I am living my potential thanks be to God!  I attended a meeting last night and bravely spoke up several times with no fear. That's HUGE for me.  I normally hate being the center of attention and usually feel stupid talking in front of people. I was filled with confidence and belief in my abilities. I shared that with Patrick and his response was, "It's about time! I love hearing that!"

11/15/19

We decided to leave for the cabin Thursday night with the three girls. I had mentioned we were going, and Ailynn and Boe immediately chimed in, “we want to go to the cabin!” How could I say no? It’s been fantastic to spend this quality time with them. They are happy to be here and we are happy to have them. Today we are making chocolate chip cookes at their request.

Yesterday,  Ollie helped Patrick do some work on some trim pieces. He excitedly told me that Ollie is so similar as to how Meghan was when she’s helped with all projects. Ollie observes what he wasn’t doing and always had the correct tools in place. He truly enjoyed working now with her. He wants to hang up the trim pieces today so she’s feeling a sense of completion of the project she helped design and build. 

Ailynn played and hung out while that was happening and Boe and I went to the grocery store. Boe was so sweet, calm and fun. I got some good snuggles from her finally. Ailynn and I had a great chat early yesterday morning as I was the only one awake. She’s got quite the imagination. I’d love to see her get into theatre and art.

Being at the cabin is healing for me.

I needed this.

11/16/19

The girls and I made cookies yesterday. I found as the day went on, I was getting more and more irritable. The things that usually make me laugh caused me frustration. It finally dawned on me I was experiencing "Roid Rage," which happens on steroids. I remember Logan getting grumpy on steroids without understanding why. I feel horrible I snapped at the girls a couple of times. Especially feeling bad for snapping at Ollie who is the most agreeable and helpful child around. I am going to control my moods better today. I was honest with Patrick and asked him not to take offense about my attitude. 
I went to bed by 8 PM. I woke up so excited thinking I slept the whole night or most of it. Turns out it was 10 PM. I was awake for a while and then slept another hour. I've been reawakened since before 0300. I can't keep doing this! No sleep isn't helping my body recover.

We had a wonderful drive home.  The roads were clear, the girls slept part of the time, and the time that they were awake was fun and joyful.  They were such good girls this weekend. I had the most fun that I've had in so long. It was just what I needed. They were happy, joyful, well-behaved, polite, and entertaining. Patrick and I just sat back and admired the little darlings.  I asked him on the way home if he could think back to when we started dating in 1985 and predict our life. I told him we have had the wildest journey but I sure am glad to be on the journey with him.

11/19/19

Yesterday I had a couple of meetings in Anchorage for my practicum and then had an oncology appointment.  My PA doesn't know what to do with me and left a message for Mayo.  Mayo says they cannot get me into the gastroenterologist until the end of January, but my appointments for all the other tests are in December. I'm not flying back in January too. My local gastroenterologist office finally agreed to see me the day before Thanksgiving but they are double-booked and told me I could be there all afternoon. Here I am with supposed GVHD in my gut and no one wants to check it out and see if it's better. I have had to fight for every appointment.  Something is wrong inside my abdominal cavity and no one is listening.

I finally went to sleep about 0200 and slept till about 0530. So 3.5 hours is better than two. I have an extremely busy week with practicum but will be done by Friday and can concentrate on the rest of the assignments before I leave for Mayo.

I'm going to go visit Granny this morning before all of my telephonic meetings begin. I miss her.  I made some homemade coffee cake to bring to her.  An added bonus is seeing Meg, Ailynn, and Boe there too!

** It was a lot of fun visiting with Granny, Meghan, and the girls.  I noticed Granny was having some pain with her legs so I grabbed a bottle of lotion and Boe and I massaged her legs and arms. Granny kept asking why she was getting such special treatment but I could tell she was pleased. Her arms are so thin and fragile.  I thought about all the times she rubbed my legs and arms with lotion when I was a child. It felt right to do this for her and I wish I had thought of it before.  I think I might try to do a biweekly "spa treatment" for her to pamper her.

I don't feel like doing any more school work tonight.  I turned in three assignments tonight- one class is 100% complete. I just have to sign on for class discussion and that's it.  I have two more assignments to turn in.  One needs a lot of editing unfortunately and the other I still have a lot to finish. Both are my hardest assignments. My goal is to be done with them by Wednesday.  Friday is my last practicum for the semester. This is a terribly busy week with practicum and it's been challenging with minimal sleep but God is helping me through it.

11/20/19

I finally fell asleep about 0230 and slept until 0330. I woke up with a nightmare about Mayo telling me I had to stay longer and have a catheter!  I was crying when I woke up and continued to cry. I couldn't stop the tears.  The battery was dead in our carbon dioxide detector and it was beeping. I couldn't get the battery out and continued crying.  It was not a good night in many ways.  However, I did get our Christmas letter written and pictures uploaded to Christmas cards in the middle of the night and sent to Walgreens. After my 0730 meetings,  I picked up the completed Christmas cards from Walgreens and then went to my all day Reentry event. I slept about 30 minutes this afternoon and now I have four hours of online classes. God is helping me out big time. My emotions are all over the place.

I think what set me off was I really did get a message from Mayo Clinic yesterday informing me to expect to stay there until Dr. Hogan tells me I can leave. They want to get to the bottom of what is going on. I feel a bit discouraged.

On the other hand, I saw someone who used to be incarcerated at PCC when I worked there. He helped out at the reentry simulation today. He spent 20 years in prison and he is very successful on the outside. My heart is happy. He also told me he had prayed for me when I was sick. How special it is to know that people I used to supervise as a probation officer care enough about me to pray for me. I am humbled.

11/22/19

I crashed today and hard. I left a workshop two hours early desperate for sleep.  I slept from 10-2 this morning but even those four hours were broken up. My insulin pump kept going off constantly and it would vibrate and wake me up. I finally decided to quit trying. I wasn't going to go back to sleep no matter how I tried. When I got home I was able to sleep about 90 minutes so I ''m feeling well enough to do some more school work.

The workshop I attended the last two days was for my practicum. This was the big event we've been working towards!  We got the PO's in one room and asked them what they needed to be trained in related to the new Prisoner Reentry program during the two-day event in January. there were lots of wonderful talks/speakers and I was so enthused to hear how our correctional system is going to be changing to help those who are releasing.  I am passionate about this cause and I'm so thankful to be part of this program as a practicum student. I truly want to return to DOC as an employee in the role of a social worker!

11/24/19

It's 0100 and here I am..... I have the three precious grandbabies tonight and they are thankfully, soundly sleeping.  I got them (and myself) to sleep by 9:30 last night. I woke up at 11 wide-awakes but was able to doze till midnight. Finally, I decided I may as well get up and work on my paper.  What is the point of just staring at the ceiling?  Patrick, of course, is at the cabin and I had such a strong desire to have the girls over I could hardly contain myself.  It had been a week since I had had them and I was missing them fiercely.  We ended up putting the Christmas tree up and Ailynn and Ollie did an incredible job decorating. I am not going to change a thing. Boe just played and chattered about it all.  We put out some Christmas decorations along beside the Thanksgiving decorations. Typically I don't mix holidays together but since I am gone so much in December I wanted to have this experience with the girls.  Even though I was thoroughly exhausted during the process, it felt amazing to provide them with Christmas music, decorating, and attention.  Afterward, I had the neighbor girls over and they watched a couple of Christmas shows and then did some art activities. I felt proud of myself as I flashbacked to my role as a preschool teacher and daycare provider and felt that I still have it in me.  

Boe can be challenging to get to sleep but only for a few minutes. The problem is those few minutes irritate the girls.  She was pulling Ailynn's hair and wouldn't stop flopping around in the bed they were sharing. I went in there and scooped her up and plopped her into my bed with a pillow between us as I don't like sleeping next to anyone.  She was happy as a clam and within three minutes, sound asleep.  She is such an easy child.  Three months ago if her mother left the room she was crying. Last night Meghan hesitated about leaving her- I know she thought I was too tired to handle the girls.  She asked Boe, "Are you going to go home with mommy?"  Boe replied, "No, I stay with Mimi. Bye Mom, love you."  

Ollie is at a stage where she is offended and her feelings are hurt if she perceives we are upset with her. I kinda snapped at her last night before Meghan left because she accidentally kicked me in the ear twice while getting off the bed when I was sitting on the floor. I truly just said, "Ollie, please be more careful.  You have kicked me twice and it hurts."  But that sent her over the edge and she sobbed and threw herself on the couch as if I had beaten her.  I gave her a few minutes and then went and apologized for snapping at her and assured her I wasn't mad, just taken by surprise and I felt terrible for making her feel I was disappointed in her.  We worked it out but she was able to express how raised voices and looks on faces affect her.  That's important to know and I am thankful she shared that with me.

Ailynn is a handful but sweet as can be.  She is also working on identifying her feelings and learning to express things appropriately.  Sometimes she shocks me with her ability to process and share her feelings. She absorbs a lot and I feel that it is important to give her some extra attention as middle-children do have it rough!

I received a message yesterday from a young girl who read my book.  She shared how much the book blessed her as she was fighting her own illness and struggling with her identity of who she was in comparison to what she had.   She said that reading Logan and my story helped her through processing her own story and she was so appreciative of me being vulnerable and honest in sharing.  I was crying as I read it. I made a difference in this girl's life because I shared my pain and journey with the public.  How precious and amazing that was and I will be forever grateful that she took the time to share that with me. It couldn't have come on a better day as I was really missing Logan yesterday and a bit discouraged about my health.

God sends angels to strengthen us.  We serve such an amazing God.  I am thankful and blessed.

11/25/19

This morning I am filled with anxiety. I barely slept at all last night and started on my one paper around 0330. I have one section left and it's a doozy. My goal was to have that paper completely finished by 0800 but I have to read some research articles before I can finish the last section. My mind is unable to concentrate and the anxiety is overwhelming.  Yesterday I didn't do anything associated with schoolwork for the same reason- no concentration.  Today I have meetings the entire day, most of tomorrow, and all of Wednesday. Then we travel to the cabin. I must get this paper done tonight! It needs to be edited and one qualified person agreed to edit it. Then I can start editing the HUGE program evaluation paper. Both need to be submitted by Saturday as I am leaving for Mayo Sunday night.  The month I have off will hopefully give me emotional restoration.  I have been through a lot this semester and the workload has been intense.

At least I got packed for my Mayo trip, the cabin, and wrapped presents to take to Texas.  I also did three loads of laundry and cleaned a bit.  Does that make it better? I have no idea. My mind is going crazy. I feel like crying and I don't know why.

11/26/19

At least I napped from 7-9 tonight. It's now midnight and I continue working on my last paper. I think the other one is done unless someone edits it and suggests something. The one left is the hardest- a 20 page proposed program evaluation for the parenting program incarcerated fathers participate in prison.  I don't know what the heck I am doing and it's nerve-wracking as this paper is the bulk of my grade.  

Tomorrow I have a meeting scheduled with ACS/CAN to talk about upcoming volunteer work in the Valley for Cancer Action Network. Then I have an appointment with my local gastroenterologist.  After that, we are headed to the cabin for a quiet Thanksgiving where Patrick will probably do lots of work on the cabin and I will continue editing my paper.  I did pick some books up to read for pleasure instead of for educational purposes.  We will need to leave there Sunday morning for the long trek back as we have Granny's 92nd birthday party at 5 and then I fly out for Mayo just after midnight.  I'm so excited that I will be seeing my mom in less than a week. I have missed her so much.  I probably drive her crazy because I call her so often and never stop talking. The poor woman can't get a word in.  I called her today to help me calm down after another night of only sleeping for 2 hours.

I wonder what Dr. Hogan and the other doctors are going to say about my situation.  Will there be any other concerns? Will they start tapering my steroids? Will I experience adrenal insufficiency again? So many questions...... I just want to be normal.

11/29/19

I was sure I had been updating this blog.  Perhaps in my addled mind, the updates were done?    I think I am having a psychotic breakdown from the lack of sleep-related to the steroids.  We got to the cabin on Wednesday night.  First, let's talk about the weather.  It was pouring rain and mid-30's which is bizarre weather for November.  There were high winds in Wasilla and power was going out which probably greatly disturbed people particularly being the night before the traditional huge Thanksgiving meal!  In Sutton where our daughter lives, they got 8 inches of snow.  At her nearby sister-in-law's house, they got over a foot in one night. Both have a few feet on the ground and there is no snow at my house or cabin.  Honestly, I would take rain over snow any day. Yes, when the snow is here, I am the first to say it's beautiful.  

Now to the rest of the stuff. I saw my local gastroenterologist before we left Anchorage on Wednesday.  I explained the tremors in my hands, the lack of sleep, the out-of-bodyexperiencins I am having, the hypervigilance, attention to detail, etc. He lowered my Prednisone dose from 120 mg each day to 80 mg. That seemed abrupt to me but he said, "I've been a practicing docotro for over 30 years and I know what I am doing probably just as well as Mayo Clinic does."  Touche doctor, touche..... I am a bit nervous about drastically reducing it that quickly but I am eager to get off the stuff so I started the reduction yesterday.  Which brings me to yesterday.

Wednesday I'd be lucky if I said I got 1.5 hours of sleep.  It was a rough, rough night.  I read I worked on my paper, I spent a LOT of time on FB, I checked emails, and I longed for sleep.  I made Patrick breakfast- a new recipe baking eggs and bacon in a croissant, I cleaned the kitchen I prepared the green bean casserole, peeled the potatoes, noodles, and made pumpkin pie. I stayed in a great mood all day and continued working on my paper.  And then, I got frustrated with the paper, Patrick made what I perceived to be a dumb comment, my mood changed from 0-4 in no time flat and I lost control.  I truly broke. Tears, sobs, yells, rants, I am ashamed and embarrassed at how I reacted.  I was out of my mind.  Sleep deprivation is a real problem.  Others warned me this might happen to me but I was trying so hard to be Wonder Woman and do everything without complaint.  When I perceived myself to be less than perfect, I snapped.  How I ended up being married to someone as forgiving as Patrick I will never really understand.  He wasn't happy with me at first and who could blame him!!  But then he offered me compassion, understanding, and forgiveness as he held me and told me I was not crazy and I would be okay.  It took a while before I could even look at him because I felt such a feeling of shame for losing control.  After dinner, he did the dishes and I took a nap and slept for probably 2 hours. I woke up feeling wonderful and NORMAL. I then continued to work on my paper.  I got it to the point where I am happy with it.  I still have to figure out some citations because my MAC will not connect to this program I use. I have a couple more things to do for my Appendices and then it will be done.  Without the title, reference, or appendices, it is 20.25 pages long.  With everything, it is about 30 pages.  It's a huge part of my grade and it was totally a foreign paper to me.  Getting through this semester with my health problems has been challenging to say the least.

On top of it all, my blood sugars have been in the mid three -hundreds to the high 400s.  Throw in lows in the middle of the night last night and Wednesday night and I've got more explanations for my crazy mood yesterday. My body and mind simply cannot take much more. I woke up at 0300 with a 53 this morning. The last thing I wanted to do was eat, but I did eat pumpkin pie.  At least it was good.  I'm still waiting for it to come back up.

Through it all, I am thankful, grateful, and blessed for a God who will sustain me and heal me.  For a husband who is loyal, faithful, and forgiving, for Casey who is maintaining sobriety and making positive changes, for Meghan who is a caring and loving mother, for my parents, grandmother, friends, and family who love and care for me.  And for my sweet dog who loves me so much and is lying beside me per usual.  God is good and I am blessed.  Please pray for me to sleep, to be mentally and emotionally restored, and to continue feeling blessed and not persecuted.

11/30/19

The last day of November is upon us. Life just whizzes by quickly. It’s almost 0100 and I’ve been awake since 11:30 PM after going to bed around 10.  I was excited when I woke up because I was sure I had slept at least four hours (not 1.5) and it was around 0300. Unfortunately, I woke up sobbing to a horrific nightmare where I was stranded in the ocean, about to be eaten by sharks, and I had put others at risk trying to rescue me. My rescuers were trying to save me by using some equipment and possibly a helicopter? But my thoughts were focused on my upcoming slow death or paralysis from being slammed violently in the water. Ugh.  

I managed to finish my appendices last night when I couldn’t sleep. We aren’t going home today instead of tomorrow so I can finalize my two papers and turn them in before I leave Sunday. I hated to ask Patrick to leave today but I was stressing myself out too much trying to do it all in one day.  We have Granny’s birthday Sunday and I want to enjoy it and not be overly stressed.

I cannot wait to see my mom on Tuesday! I worry about keeping her awake. I will have to figure out how to lie quietly for hours instead of roaming around per usual..