May Day has a couple of different meanings. One is the tradition people used to participate in that involves leaving flowers for someone anonymously- or at least that is my understanding. The other thing that comes to mind is May Day May Day-
meaning you need help. Yesterday was one of those days for me but it was the last day of April. I had a Telehealth appointment with my endocrinologist who broke the news that part of my pituitary gland no longer works and it will never recover. I knew I had
adrenal insufficiency and I have been on hydrocortisone since I’ve been off Prednisone. What I didn’t know was my pituitary gland is partially dead and the other half can also fail. The doctor told me this over a crackling connection of Telehealth.
He was ill-prepared to deliver the news in a well thought out manner and left me with many questions.
He told me I have to get a medical alert bracelet stating I have adrenal insufficiency because if I am ever in a wreck or get sick I must have steroids.
He also said I have to have injectable steroids on me at all times in case of an emergency. I’m not sure what constitutes as an emergency other than fevers.... He said this is a very serious condition and he succeeded in freaking me out if that was his
intent. I’m sure it wasn’t his intent to scare me, but he left me with so many questions.
I was angry after getting off the phone. I am almost five now (transplant age) and I am fed up with medical problems. I am less angry today-
just confused. I believe God will heal me of this despite being told there is no recovery. I am done with complications. I didn’t survive leukemia to die from complications after graduating with me MSW! The doctor thinks it’s the Graft Vs Host
Disease that caused my pituitary gland to fail.
I have decided I don’t believe the blood tests. I refuse to believe my pituitary gland has failed and I am asking for a repeat blood test next month. I see my endocrinologist
again on Wednesday to discuss my diabetes which is out of control. He said we didn’t have time to continue our Telehealth appointment last Thursday. Somehow I am going to get all of my organs working.
Patrick’s yells and moans
kept me up most of the night. He is even sleeping in the loft but he is extremely loud. Last night he went fishing and I went to sleep fairly early- maybe around 9. I woke up to hearing people outside my cabin caLing, “Come here, Kelly. Kelly, come on!”
At first I was thinking, “do I grab my gun?” But it took me just a moment to realize the stray dog that refused to leave our cabin the past few days is named Kelly. I was not pleased to be woken up. Seems when Patrick got back from fishing, he
drove right to their house to tell them their dog has been here. What he should have done was put the dog in his truck and drive him down there. Because when this couple was prowling around outside my bedroom window yelling for “Kelly”, the dog
was somewhere else- he had left when Ringo and I went to bed! I feel bad for the dog because they chain it and he keeps breaking his chain to come here. This happened last summer as well. The dog is pretty thin so I fed him last night. To thank me, he took
off with Ringo’s dog bowl and I can’t find it!
There will be an online commencement today for UAA and I plan to watch. After that, I have a Zoom meeting with two people who I work with to plan work sessions for the Garden of Reflection.
Unfortunately, due to being in Kasilof so much in the summer, I don’t spend as much time at the Garden as I should as a founding member.
I continue to be involved in addressing the needs of returning citizens, even though I have completed my grad
program. I’m in the middle of organizing a webinar for probation officers to understand the needs of women who renter society after incarceration. I enjoy this work so much and it keeps my mind fresh and active.
I will never be one to sit around
and do nothing. I was pleased that I got some physical work down yesterday too. I used shrub pruners to chop down dozens of seedling trees on the bank. Patrick tied a rope to the beam of the cabin so the girls could propel down the steep cliff. The seeings
and brush made it difficult for them to maneuver down the slope so I am determined to clean it up. What started out as one area, will end with the entire bank being trimmed. It will take days of working and a chainsaw to finish. Patrick doesn’t trust
me with a chainsaw so he may have to do that part or teach me how to use it safely. I feel so free- no more papers to write!
Sleep continues to elude me. I have been awake since 0200 and left the cabin at 0500. I am back in Wasilla and
exhausted. I know I can fall asleep easily, it's the staying asleep that concerns me.
Tomorrow I have nothing on my agenda besides paying bills and yard work. I will take it easy and nap when I can.
I figured out a way to get
some sleep. When I woke up at 0200 this time, I took a pill my oncologist gave me to help me sleep. I went back to sleep around 4 until 7. I feel as if I tricked the sleep-depriving demons! I haven’t gotten out of bed yet- I feel so tired. But, I will
and not the sun is shining so it should be a good day.
Yesterday was a good day. I did not leave my house via car at any point. Debbie came over and we practiced physical distancing while walking our dogs throughout my neighborhood.
We got in about 3 miles and I felt good. She commented on how much better I am walking which made me feel satisfied in my recovery. I also mowed my lawn last night! I wanted to get the leaves up and although I had spent a lot of time raking and emptying
the wheelbarrow, I felt a mower would do a much quicker and easier job of it. Today I will need to water the grass so it will turn green. It is extremely dry right now. The Valley has already seen some wildfires so I hope everyone will be careful.
Ollie called me yesterday to tell me she was working on the deck with her daddy but her sisters were inside watching TV in the loft. She's so cute. She loves to help her dad with projects. The other two don't have as much patience, but they are also
younger than she is. I think Ollie enjoys the attention she gets from her dad. I love it when fathers are patient with their children. Patrick was that kind of father to our children and they learned so much from him.
We are hoping our nephew
can come up from Colorado to help us with the RV Park. Patrick cannot do all of this alone if we plan on opening anytime soon. I hope Matt can make it as he is a great worker- smart and knowledgeable. I can do the business side of things, but my
physical abilities and knowledge of building are very limited.
I have 3/4 grades back now and so far all A's. I only got 2 points off on my final capstone paper and 3 points off on my practice evaluation paper. That one worried me because the
professor of that class is the hardest grader, and the paper was research-oriented which is not my strength.
I cannot get a new sensor to work for me today and so I will need to call Medtronic. It seems there might be something wrong with my charger.
My blood sugars are still out of control and I really need that sensor to work. Darn medical stuff anyway!
The leaves are popping out on the trees reminding us that summer is coming soon. The grass is starting to green and the birds
have become chirping. It's beautiful out and we have been fortunate to have some warm weather. With summer comes hope; a hope for warmth and sunshine, hope for good times with friends and family, and hope for a future without COVID-19.
Casey and I spent years watching the trees eagerly awaiting the emerging of the leaves. Each day, starting usually around the end of April, we would begin our observations in sheer eagerness. Every year we would all of the sudden see the leaves emerge
and ask each other if we had missed them or if they had just come out overnight. It was a fun tradition to share with him. Casey and I have a lot of shared common interests. He's in Texas so he is not here to share the beginning of the Alaska summer
with me. He's at a new treatment center and it's my heart's desire and fervent prayer that this experience will be even greater than the beginning of new leaves and flower blooming. It is my hope that he himself blooms with healing, love, and growth.
I love watching new life come up from the ground, but watching him have a new life free from addiction is the best gift I could have.
We kept Ollie and Boe last night. Boe (at the age of 2) actually drove the motorized go-cart around
by herself. I was a nervous wreck but no one else seemed concerned. I think I worry a lot. She said, "I can't turn it around by myself!" Ailynn had a meltdown before they left their house so she didn't get to spend the night, unfortunately. We missed
her. Meghan has already picked them up today and the house is quiet. I do need to go and put everything back in order. It's amazing how messy it gets when they visit. I had them make a Mother's Day card for their mom and added an extra piece of paper
in there for Ailynn to make one too.
I got a very sweet Mother's Day card from Casey and it meant so much to me. I treasure all things from my family.
My fatigue level has increasingly worsened these past few days. I've been
absolutely exhausted. I woke up at 0500 this morning, did a few chores, took Granny medicine, then came back home and went to bed. At 1 PM I met Dorothy and we went hiking. I was surprised and pleased that I did really well on the hike. Maybe
I just need more exercise and sunshine. It's so beautiful today and tomorrow is supposed to be even more beautiful.
I'm going to make Granny blueberry waffles for breakfast tomorrow to celebrate Mother's Day. Meghan and the girls will meet me over there
and the girls can run around outside while Granny and I sit on the porch and admire them. She sure misses them as she has not seen them for several weeks.
I miss my mom and wish I were with her for Mother's Day. I sent her gift a few weeks
ago and of course, I will call her. I love my mom very much and I'm incredibly thankful for her. I will also call my dear mother-in-law. I am blessed.
Patrick left me a card to open tomorrow along with some much-needed yard tools I told him I
wanted. He's at the cabin working hard on the RV Park.
I got my ticket for my Mayo Clinic trip. I am leaving June 29th and will return on July 1st. I decided to fly Delta since it's a non-stop flight. I think that will be safer for me. The last
thing I need is to be further exposed to germs by changing planes in Seattle or Oregon. The fewer people the better for sure.
Today is my mother's birthday. My mom is a wonderful mom and I love her so much. I wish I could be with
her today to celebrate her 78th year. She was the middle child and outlived her siblings. She is a strong woman of great faith and an inspiration to me for sure.
My awesome non-stop Delta ticket got changed to a layover in Seattle. I am an unhappy
customer. The only reason I went with Delta was because of the non-stop flight. The email I got said they would do a "credit for two years" if people decide to cancel their flight. I don't want credit- I want my non-stop flight or my money back so I
can fly on Alaska Air. I'll have to make a phone call to them today and see what we can work out.
I made Granny, Meghan, and the girls blueberry waffles and eggs and took over to Granny's house. The girls played outside while Granny watched them from
the porch. She enjoyed seeing the little ones and they enjoyed being there. It was a beautiful and sunny day. I could tell Granny seemed exceptionally tired yesterday. She said she didn't sleep well. It must run in the family! By the time
I got home, I was also feeling extreme fatigue and took a nap. I never did feel energized and fell asleep watching TV after that. I finally went to bed and although I woke up a few times, I slept quite a bit until 0430. I don't know if it's the adrenal
insufficiency wearing me out or what. All I know is extreme exhaustion is no fun.
May 14, 2020
My 5th rebirthday- transplant anniversary, the day I will always remember and be thankful to that mother in France who donated her
baby's umbilical cord stem cells. That little French baby saved my life and I am here today because of the unselfish decision his mother made to donate the cord after his birth.
Last night I was overcome with emotion and cried quite a bit. I have a
variety of emotions. First, the gratefulness of being alive, second, the MSW graduation ceremony I am having via Zoom tonight, and third, perhaps the most significant of all is remembering Logan and his journey. Yesterday I received a video through
email from Be the Match. It was a video I was part of in October when I went to the Leadership Ambassador Training in Minnesota. The video was about Logan's last day on earth. It was a hard topic for me to discuss and certainly hard for me to watch.
The fact that it came the day before my own anniversary of transplant is ironic, but seems to be from God. God's timing is amazing. Combining all of those three things together made for one emotional Kelly last night. Today I still feel a bit unsettled,
but also happy. I'm happy to be alive and well and I must say I AM proud of myself for overcoming so many obstacles and graduating with my MSW through it all. God sustained me and I never gave up. I have such a wonderful support system and I am thankful for
everyone who is part of my life. I am grateful for all of the prayers, calls, emails, texts, and other forms of encouragement.
God gets all of the glory tonight as we celebrate these two milestone events.
I posted a video of
my celebration above and I hope you can view it. We had so much fun and it truly was a special day of celebration! Ollie and Ailynn Were so proud of me and excited and it just made the whole night that much more fun!
Thanks for all of your support!
We kept the girls on Thursday night. I had them for 24 hours from the time Meghan dropped them off to when she picked them up. They left around 2:30 PM and I didn't leave the couch until I went to bed around 9 PM. In between those times,
I sporadically napped. I was hit with EXTREME exhaustion! They wear me out but they sure were enjoyable to have. We spent some time outside yesterday. They played and I did some yard work. It was a gorgeous and hot sunny day. I wanted to take Ringo
for a walk but I could not summon the energy.
This morning I will be going to Granny's to give her pills to her and breakfast. Then, I have to run into Wasilla to work at the Garden of Reflection. We have organized a work party to prepare the flower
beds for planting. I hope enough people show up so it won't take too long. It's not that I mind, but we do want a lot of grieving parents to participate. It's a way to bond with one another and share that camaraderie of losing a child to death. I do
this in honor of my baby boy, Logan Joseph Marre.
The Garden of Reflection cleaned up really nice. We had a fantastic turnout of people and we are ready to plant in a couple of weeks. I'm grateful to Mark and Sharmin for
donating the flowers each year from MidValley Garden and Greenhouse. Their flowers are amazing!
Yesterday I got to see my cousin David Lee again. He and my uncle came to visit Granny. Holly and I hope to run into Anchorage tomorrow night
and have dinner with him before he heads back to Louisiana. David Lee, Holly, Mark, and I used to have a marvelous time at Granny's when we were kids. We would explore the woods for hours and hours. When I watched my three granddaughters playing
in the woods at the cabin, I was instantly taken back to those wonderful childhood memories. I was taken back to the days when kids actually used their imagination and got lots of exercise, rather than sitting in front of a computer screen. (Like I am
doing now hahaha) Those were the good ole' days!
I made it to the cabin last night. It was a long drive and I was so tired. About 7:30 PM I heard the pitter-patter of little feet. My girls are here! Ailynn threw herself in my
arms, followed by Ollie. Boe was still With their parents parking the 5th wheel. They are doing a trial run and now we know we need to modify our parking spaces. I look forward to a fun weekend with them.
Its been a whirlwind that is
for sure! Meghan, Kirk, and the girls will head back to the Valley today. I had offered to keep them down here for the weekend, but we have so much going on I decided it would be best to keep them Tuesday and Wednesday when we get home. We will have more quality
time to spend with them. Meghan also decided she and Kirk will be driving to MT and CA without the girls so I will get them for a week or so while they drive. I’m thrilled about that. Patrick will be at the cabin with our nephew Matt. Patrick hasn’t
reserved an excavator and I am so worried not one won’t be available when we need it. We have so much work to do. It was awesome that Kirk drove their 5th wheel here because being we know what’s needs to be changed as far as RV spacing goes.
Since theirs is 43 feet long, it gives us valuable information.
It is supposed to rain all weekend which is such a bummer- especially for Patrick who will be working in the dirt.
I had a Telehealth appointment with an ENT the other day.
He recommends allergy testing. I keep having problems with hoarseness and reoccurring sinus problems including a very gunky left eye. Based on past CT scans, surgery may be a possibility in the future. I have had one sinus surgery and swore I’d never
do it again.
Rookie mistake for me yesterday. I forgot to take my meds until the afternoon. I recently discovered that taking my hydrocortisone earlier helps me sleep better at night. I kicked Patrick out of bed around 11 because he
was snoring. That sounds so mean, but it’s easier for him to leave than me. I have to take two medications with me, my glucose monitor, and my eye drops. I woke up again at 0200 and have been steadily awake since 0330. It’s now 0530, and I just
took a pill to help me sleep. I hope to get a few hours in so I am not falling asleep in the middle of the day. Yesterday, I felt so exhausted. I am not sure if it’s strictly my cortisol level or a combination of that and having the girls here. They
do wear me out! I also did some cleaning on our bank- pulling weeks and cutting down small sticker bushes. While it is good to accomplish things, I wear out pretty easily.
The Bear Den Cabin is coming along nicely. Next time I am here I will be able
to set the bed up. We just need the septic in and the electric lines to the cabin and it’s ready to roll! I ordered a few things from Amazon to finish off the decorating. Things that used to take a week to get are now taking a month.
I plan to
go home tomorrow afternoon so I can rest up before having the girls Tuesday and Wednesday. They are leaving soon so we want Patrick to be able to spend a summer much time with them as he can since he will be back at the cabin Thursday for two weeks. I’ll
be home enjoying them and keeping them at my house until Meghan flies back to get them.
I amazed myself this weekend as I stacked wood without pain! The last time I stacked a bunch of wood was six years ago and I was so
out of breath. Turns out I had leukemia but hadn't been diagnosed. To do this six years after was an amazing feeling! Not only that, but the day I stacked the wood, a FB memory popped up of me five years ago in the hospital receiving platelets,
red blood cells, antibiotics, and fluids. What an incredible feeling to know I am ALIVE and doing normal things! I am greatly encouraged. Sure, I was incredibly tired later, but gosh darn it, by the grace of God I DID IT!
Matt arrives Thursday and then he and Patrick will be at the cabin for two solid weeks working. I am praying diligently that they are able to get all that needs to be done completed in those two weeks. We have another neighbor down there who offered
to loan Patrick his backhoe and we are so very grateful.
I received some letters from Casey and I'm so glad he is doing well in his treatment center. Today it has been three weeks since he has been there. God is so good.
Extreme fatigue has been hitting me hard lately. The girls spent the night and Patrick had so much to do. Unfortunately, I was about as helpful as a wet noodle as I could hardly put one foot in front of the other. I went to bed by 9 leaving
him to get the little ones asleep. I suspect low cortisol and overdoing it at the cabin this weekend has intensified my fatigue. I have the girls all day today and I pray I have the energy to make the day fun. I do not want to be the "lame" grandmother
who can't do anything. Their other grandmothers have lots of energy and they are full of fun. And they are both slightly older than me! I don't want to be the "dreaded grammie" they have to tolerate. I guess I am feeling a bit insecure right
I went through the girl's closet last night as I had stored a whole bunch of clothes in there. Clothes I hadn't looked at in four years. They were my probation officer shirts, vests, and pants. I decided to take the cargo pants to the
cabin because they will probably be useful. I am keeping some of the vests, but also going to give a bunch away along with some very nice DOC shirts that we PO's wore. No need for those anymore. :(
I hope the sun shines today. Perhaps if it's warm and
we hang out outside I will get more energy and stamina. If it's nice, I told Granny I would bring the girls over to visit her, and we can be outside so she isn't exposed to germs. My first planned stop of the day is to Hyer Ground Espresso and then Midvalley
Garden and Greenhouse. It is double-punch day at the coffee shop and I promised the girls a hot chocolate and me a latte. I also want to look at trees again. I wish I had the money to do all I need to do at the RV Park, but at least I can plan
for next year.
The best plans don't always work out. Meghan forgot she made plans with her sister-in-law, so she asked me to bring the girls home by noon. I was still going to go get us drinks at the coffee shop, but Ailynn and I had
a disagreement, and there were tears from both of us and hrut feelings. We didn't get those drinks. On the way to her house, we talked about what happened. She shared with me that she doesn't know why she gets angry every day. When I asked her how I
can help her through it, her little voice cried in anguish, "I don't know how you can help me." My heart simply broke. I find it amazing that at four, she can identify and articulate the problem, as well as admit she doesn't know the solution. I told her I
am willing to ask a class to learn how to help her.
They came back tonight to see Patrick one last time but Boe isn't spending the night as she doesn't feel well. I had another day of overwhelming exhaustion and I fell asleep outside. I feel so discouraged.
I read a post on my bone marrow support page and a lady shared her family doesn't understand what she's going through and basically told her she should be feeling and acting normal. I feel an overwhelming amount of sadness for the families who don't support
one another. I also feel grateful that I have a husband and wonderful family and friends who do allow me to share my frustrations, sickness, pain, and sadness without judgment.
I feel sad that Meg and Kirk are driving out on Sunday.
I'm happy to have the girls an extra week, but they will be leaving. I'm sad that I won't have any children or grandchildren in Alaska.
Yesterday I visited with Granny. It was such a beautiful day and we sat outside while
she enjoyed the homemade chicken noodle soup I brought over. I convinced her to go with me to MidValley Greenhouse so she could see Mark and family. Her caregiver, Liz, and I took her and pushed her around in the wheelchair. I know she was
tired, but I think it was important to get her out and about. She stays home so much which of course is important due to coronavirus, but it's also important to be stimulated. After we left the greenhouse I took her to my friend Misty's place to
buy some tulips. I put them in a vase and left them for Granny to enjoy. I'll see her again today as I will take her breakfast to her and give her her medicine. She is a joy and I love her.
It's a sad, sad world we live in. The
latest senseless killing of a black man by police officers has stormed our nation. While I agree that what happened is inexcusable and horrendous, I do not agree with the looting and the violence that is taking place. I don't understand how anyone
thinks it is okay to match violence for violence. There is limited peace in this world and people are quick to react negatively and violently as a solution for injustice. There are far better ways to get a point across than resorting to more violence.
I fear for our nation. We are so divided and the huge chasm is creating disharmony across our nation. We need the peace of God to pour down like rain and flood our nation.
Meghan and Kirk decided due to all the COVID fiascos, they will be
taking the girls with them on the drive through Canada after all. I am devastated and so sad. They leave tomorrow.
Severe stomach pain woke me up about 0330 today and I haven’t gone back to sleep. I did overeat last night and
hope that’s all it is and not the GVHD. I’m absolutely miserable that my daughter, son-in-law, and granddaughters are leaving Alaska today. I will have no children or grandchildren in this state and I don’t know how I will bear it. It is
not like I can just jump on a plane and go visit. I am trying to get out of my June visit to Mayo. I’m too scared to fly with the continued increase in COVID diagnoses. Life feels really hard right now.