August 1, 2019

Oh man, summer is almost over! August 1st is here already. I wanted August to be here to get a break from school, but not because I wanted summer to be over.  Thankfully, the weather is supposed to be good at least for the next week. With the Alaska State Fair around the corner, we Alaskans know it's going to start raining soon and won't stop until after the fair is over.  That's just the way it is up here.

Last night I fell asleep at about 8 PM and slept until 11 PM. Then I was awake until about 0500, which wasn't cool at all!  I slept only till about 0900 and have been busy doing laundry all day. I had five beds to change the sheets on so have been busy playing Susie Homemaker.  Tonight I finished my last summer class. I had a presentation to do. Thank GOD I have three weeks off. I do realize that I do not rest well, so I likely will find something meaningful to do. I have read a few books for pleasure and have been taking Ringo for a walk as my health allows.

Dr. Spencer called me yesterday to tell me they did decide to put me on some medication for the GVHD in my colon.  Mom will stop and pick it up on their way to the cabin.  They are joining us for a weekend, which makes me happy.


It was nice having my parents and Casey here this weekend. Dad and Casey helped Patrick with the clearing for the RV Park. We are so far behind on getting stuff going. The borrowing of the excavator has been delayed; unfortunately, the well installers keep postponing, and we can’t do anything with the septic till the excavator is available which means we can’t position the cabins either.  Today I helped fill a truckload of wood from some knocked down trees which was exhausting. It was sweltering, which contributed to my fatigue, I am sure. Now it is 0130, and I can’t sleep. Our alarm went off at home, and the troopers are there. A picture fell which set it off. I’m not sure which picture it is or if the glass broke. I know they are busy, so I didn’t want to ask too many questions.


It's another super hot day in Kasilof. Really hot!  It's been a beautiful summer, and we shall have to remember that as we go into rainy fall and snowy & cold winter.  I need to be outside more, but this wimpy Alaskan girl gets overheated easily.  Debbie is on her way here, and we are going to hang out for the next couple of days.  I am hoping Meghan, and the babies come on Thursday. I got a 100% in my Advanced Families & Group class but anxiously awaiting a grade for my medical social work class.  I have one paper left to be graded, and it's a huge one- worth 200 points. My other document that was worth 100 was graded at 85%, which felt like a gut punch.  She said I put way too much information in the paper and should have narrowed it down better. I struggled with that paper so much, and I hear what she's saying, but I don't expect anything by A's, so it's a hard one for me for sure. Humbleness is being taught to me. 

 I have been helping our elderly neighbors out down here. Christine has dementia- possibly beginning stage of Alzheimer’s. She’s experiencing a great deal of swelling in her legs from the fluid. She’s on medication and has trouble understanding which pills to take- or even remembering that she already took her pills. I’m going over twice a day to make sure she takes the right ones. Tuesday I will be taking them to her doctor appointment. Harold is almost blind from glaucoma, and he’s extremely hard of hearing. I worry about them both a lot. Being with them also makes me miss Granny, and I feel guilty for not spending more time with her. I also miss my grandbabies.


The last few days have flown by.  My friend Debbie came down here (at the cabin) to spend a couple of nights with me.  We took lots of walks with the dogs and yesterday went into Soldotna to go to the Soldotna Wednesday Market. It is scorching here, and it's hard to cool off. I am NOT complaining, really!   I have continued helping our elderly neighbors.  Another neighbor and I took Christine to the doctor on Tuesday, and we are waiting to see if they adjust her medicine.  She has this neat thing (yet another neighbor ordered) that is called the Pill Butler  It spits out the needed pills at the required time. Unfortunately, though, the pills are not in there correctly due to previously changed medications, so I go over to make sure she takes the right pills.  I am worried about leaving them on Sunday.  Thankfully they do have other good neighbors who help out as well. Patrick is putting in a septic system for Harold tomorrow.

I am all finished with classes and have two more weeks before school starts again.  I was pleased to get an A in both classes- Advanced Families and Groups and Medical Social Work. I did get 100% on that last paper I was waiting for a grade.  Two semesters left, and then I will graduate. It will be a challenging year, but God will give me the strength. He opened the doors so he will provide me with the knowledge and the skills to do this.  I am excited about being close to the end of the program. I am eager to use my skills to help those in my community.


Tomorrow is my oldest granddaughter's birthday.  I cannot believe six years have flown by.  Olivienne is so incredibly mature, sensitive, and kind.  She has empathy down pat. She reminds me a lot of Logan.  I can talk to her like she's an adult just as I could with Logan.  I love that child so much.  She was a huge help with her sisters at the cabin.  She put Boe to bed every night.  Boe thinks of Ollie as a second mom, and whenever she is upset, she wants her.  

This morning I am having the stent from my bile duct removed.  Mom will be taking me.  Mom just had an endoscopy on Friday.  She is having similar issues but certainly for a lot longer than I have had mine.  I'm so thankful for my mother, who is always eager and willing to help me no matter what she has going on in her own life.  I had another painful spasm on Friday night, but thankfully it only lasted a couple of minutes.  This morning the backache I have had most mornings is back with a vengeance, and I cannot take anything for it because of the upcoming procedure this morning.


Our warm and delightful weather has continued into August.  This is the best summer we have had it years.  We indeed have broken heat records.  As mentioned before, the fair is right around the corner, so it will begin to rain.  It is inevitable as it's an Alaskan tradition to go to the fair in the pouring down rain. 

May 2, 2020, is my hooding ceremony for my MSW degree. IF I pass the next two semesters, of course. I am so looking forward to this ceremony.  Years ago, when I got my Bachelor degree, I saw someone get "hooded," and I was in awe thinking how smart they must be and never imagined I would ever get my graduate degree. I pray that my health stays stable, and this dream of mine can become a reality.  God has been so good and faithful, and I pray that all goes as I hope it can go.

I was accepted as a volunteer ambassador for Be the Match.  I will be going to Minnesota in October for a two-day training. I am incredibly honored and excited about this opportunity and plan to take this volunteer work to a whole new level in educating others of the importance of becoming a bone marrow donor, and the services that Be the Match offers.  I will gain new skills on advocating for services from my senators and representatives too and hope I have the opportunity to do so in Washington D.C. as well as in Juneau.  I wish I were thirty years younger so I could have more years to do community service activities.

 I had my bile duct stent removed today.  It was a smooth procedure, and I had a quick 30-minute nap during it. I feel fine afterward. I had another painful episode on Friday night and hoped that I don't have another.  The doctor up here finally got a hold of Dr. Hogan, and they decided to start me on the GVHD medication. I was extremely reluctant to take it as there are supposed to be quite a few side effects. I fought it hard, but I lost the war.  Six weeks I must take it, and then another procedure will be done.  The doctor took more stomach biopsies today.  I'll follow up with the local doctor in six weeks and see what the plan is. Hopefully, I won't have to go back to Mayo before May.


My oldest granddaughter is six years old!  The day Olivienne was born, I was a nervous wreck.  I remember feeling as if my brain and body were disconnected. I cannot describe my excitement and nervousness. I was blessed to be present at her birth and was blown away by how calm Meghan and Kirk were.  They did everything right in bringing her into this world. I loved Ollie Mae so much, and when I was diagnosed with leukemia before she was even a year, I remember the anguish of being away from her.  I am so thankful that Meghan brought her to Idaho to see me at least one week a month.  That was a considerable sacrifice for Meghan, and I will never forget how compassionate she was to do that.  She knew I needed Ollie to continue to be motivated to fight for my life.

This morning I went with Meghan and the three girls to get a pedicure.  It was so fun to sit there and see the looks of excitement on their little faces.  I held Boe while she got her toenails painted.  She was so patient waiting for her turn.  There were no temper tantrums or anything. It was an enjoyable morning.  After that, I went and visited my friend Wendi in the hospital.  She had a serious operation, and I wanted to cheer her up.  She was incredible when I was sick, so it was time to return the favor.  Wendi is one of those people who have had many health issues and still manages to be cheerful and support herself.  She's amazing.  I had OT today and then had to come home and take a long nap as I was exhausted.  I've been having pain and other issues that disrupt my sleep night after night, and it gets tiring.

I've been able to squeeze in a few visits with my friend Pam who is back visiting from Germany.  She brought her husband, three of her four adult children, two of their boyfriends, her two step-sons, and one of their girlfriends.  They've been in Alaska for a few weeks and are exploring the sights.  It's lovely to continue seeing longtime friends who mean so much to me.


I went over to Meghan's to see Ollie before her first day of kindergarten. I also got to see her class.  Ollie came home tired last night and told Meghan that she needed a hot tub soak and a shower. Meghan said after she did that and had dinner, she was in a better mood.


Ollie didn't want to go back to school today.  She told her mom that she already went and asked why she had to go again.

I went over to Granny's today to make her breakfast and give her her pills.  She is having difficulty remembering to take the medicine- very similar to what Christine is going through in Kasilof.  Before I left I had gotten my own pills out of the bottles and put on the dresser. I take out morning and evening pills to remind myself to take my meds.  I do not remember taking them at all but they weren't on my dresser. I'm supposed to be responsible for helping others take their pills and I cannot even remember taking my own.  This is like the blind leading the blind.  Granny's memory is definitely getting worse as is her mobility.  I set up an appointment with a care coordinator next Wednesday to discuss options and programs for her. It is so difficult to watch my strong Granny go through the aging process.  She was always so fierce and capable. I know it's a lot harder on her than on me so I don't mean to be selfish. I am just sad that she is losing her independence.

I have spent the past couple of hours paying bills and getting our finances in order.  As next week is the beginning of the fall semester, I must get as organized as possible.  I must get in a walk with Ringo too. I finally took him for one last night. I wore a sleeveless top and shorts at 8:30 PM and was perfectly warm. I love this fall!


The weather has turned windy and a bit chilly. Most of the leaves will soon be off the trees. It is a sure sign that summer is over. There will be no more complaining of it being too hot. Instead, we will complain about the wind and chilly temperatures.  It seems we are often dissatisfied with nature, with life, with our jobs, etc. The other night I was mowing my yard and grumbling to myself until I thought, "I HAVE a yard to mow I HAVE a house to clean! I AM here to enjoy things in life and I'm blessed to have chores to do and be well enough to do them." That realization changed my bad attitude to one of appreciation. 

Thursday I went all the way to Anchorage to get a couple of live immunizations I had permission to get.  I forgot that if I had GVHD I was unable to get them. I had only recently found out the GVHD was present in my colon.  Thankfully, when I got to Providence and pulled out my paper I saw the statement on the bottom NOT to get immunizations if GVHD is active and if I am on any immunosuppressive medication.  I did give in to the doctors who insisted I start a medication for GVHD. I fought it tooth and nail but was warned my GVHD can go from mild to severe quickly and it was vital to take the medication. I've been having some stomach pain (different than before) that I believe is a side effect of the meds.

Yesterday was Ollie's birthday party and Meghan and Kirk had a hot tub full of children and a house and yard full of adults.  It was a nice evening (despite the wind) and Ollie was blessed with multiple gifts.  She was very appreciative and made sure to thank everyone which I appreciate.  

We have had guests here for the past couple of nights. Our friend and former neighbor, Jan, and her sister, Carol are staying with us for three nights.  Jan moved to Coeur d'Alene several years ago.  We had scheduled dinner together when Patrick and I road tripped to Idaho in 2014.  Jan and I reminisced about me calling her the night before we were to have dinner to ask her if the hospital there was any good.  That was just before I was diagnosed with leukemia.  We were so fortunate to have Jan there as she helped us coordinate a lot of things and offered her house when Mom needed a place to stay.  Jan visited me often in the hospital and we felt comforted knowing we knew someone there.

We also had Rick stay with us last night.  Rick is the former owner of Patrick's company and also a good friend.  Rick was amazing when I was sick.  He gave Patrick endless leave to be with me and helped us financially and encouraging others in the company to help us out as well.  Last night I looked at those two people who blessed us so much and thanked them for their support and we cheered me being alive and well.  God is so good.


2:45 AM and I’ve been wide awake for almost an hour. I have to be up in 2.5 hours to get ready for the all day seminar for my MSW program. The usual pain in my hips and shoulder initially woke me up but then I think anxiety kicked in to finalize the inability to sleep. I also woke up at 11:30 PM thinking it was almost morning. This will be a long day.

Yesterday I went to the opening day at the fair with Keeli, a young gal in the MSW program who is staying with me for a few days. I met up with Meghan and the girls and had a great time watching them fawn over the animals. One bull tried to lick Ailynn and she gave out a loud shriek. I take every moment I can get with those precious girls. I love spending time with my daughter too. My day started out great as Casey sent me an unexpected text saying he hoped I had a great day and he loved me. Being a mom is an incredible gift.

As I lie here awake in the wee hours of the morning, my mind keeps going to the plaque we are purchasing for Logan at the Garden of Reflection. What should the third line be? The first two lines are his name and dates for birth and death. I want the third line to say something to represent the incredible love we have for him. I’ve had several ideas but none that seem quite right.

There is a big work party at the Garden on Saturday and I have the final day of the seminar to attend so I can’t  make it. Of course I feel guilty because I certainly don’t put the work into it that Wendy and Dawn have been. Life has altered so much for me. First my diagnosis, then treatment, then school and complications from treatment. There’s so much I want to do and I wish I could clone me a couple of times- healthy clones!

Sunday Debbie and I are going to be “No-Smoking Ambassadors” for the Lung Association at the state fair Kansas concert.  We will be a gentle reminder for people that the fair is a smoke free environment. Plus we will get into the concert for free which is a nice bonus!