June 3, 2019
Some of us grieving mothers are going to do some weeding and planting preparation today at the Garden of Reflection. This garden is a beautiful spot to reflect on the memories of our children and loved ones who have passed
away. There will be a new memorial wall going up, and people can purchase plaques for this loved one. We all find comfort in finding their names on memorials. At least I do anyway.
told her- "build your sister up in encouragement,
don't make her feel bad because she doesn't know something." As adults, we should be doing the same thing we are teaching our children. "Play nice!"
I took the girls to church today. Ailynn said, "I want to go to Church on the Rock but I only
want to see Grandma Carole and Pockie, I don't want to go to the kids class or be with other kids." And that's exactly what she did. Ollie had a great time and made lots of friends she said. She'll be going to kindergarten this year and I am both
excited and nervous about it. when we got back from the cabin last night. I haven't been feeling well all weekend. I am incredibly fatigued and now have body aches. Last night I was running a slight fever. I get out of breath when I
walk much, and food isn't tasting right. This is how I felt before I was diagnosed with leukemia, so all kinds of things are blasting through my head right now, and I am telling those voices to SHUT UP! Yesterday was National Cancer Survivors Day.
I'm going to keep saying, "I AM a survivor!"
I do not have leukemia anymore. It is not back. I got my blood tests results in today. A week ago, my hemoglobin and hematocrit were below average, which was what happened when I
was first diagnosed. I had further blood tests on Monday, and those two tests are now in the normal range. What wasn't normal was my iron level- it's substantially low. My Ferritin level is pretty high. My ANP said the low iron could explain my extreme
fatigue. The Ferritin level could be because of my recent sinus infection- which I believe I still have. I am waiting to hear what I can do about boosting my immune system to keep me from getting sick all the time. I am thrilled that we can go
on with our lives. I don't think it's going to come back. I am delighted and grateful right now. I hate that "what if it's back" feeling I get from time to time. From what I understand from other survivors, it is a common fear.
I had it all planned
out- how I would break the news to my family, how I was going to manage this, etc. I was calm yet a bit afraid to be honest. Fear is not from God! God is good all the time, all the time, he is good!
A typical phrase cancer
patients/bone marrow patients often hear, "you need to accept your new normal." I DESPISE that term "new normal" because I want the "old normal" back, not this "new normal" crap. That statement is harsh but also accurate. Before I got sick, I was
able to run, jump, and move freely without pain or discomfort. I felt younger because I wasn't limping in pain I was just fine the way I was. Well, the reality is here, and I am not the same person. That old normal has morphed into the "new
normal." The new normal is learning to accept that things have changed. I am still not satisfied with the term new normal, and I am going to create something I can live with without feeling angry when I discuss it. I feel there is nothing "normal" about my
pain and difficulties and that is why I do not like the phrase "new normal." Maybe " treatment recovery stage" is more appropriate.
This morning I was listening to a mindfulness lecture as my doctor prescribed. Yes, I am attempting to be a compliant
patient and learn to relax. A miracle has occurred! The lesson this morning was "acceptance." While I may not be "okay" with what is happening in my body, I can let go of the negative thoughts and accept that my body isn't perfect. There
are problems with different body parts that cause me pain and discomfort, but I can allow that they are there and still be happy. The key is to acknowledge the problem is there but not allow it to consume your thoughts and allow the disappointment of
what has happened to your body overwhelm you but to accept it is what it is basically. We can allow ourselves permission to have difficulties, struggles, and pain, but we can also focus on all the good things we have going on. Even in the very
bad moments, we can typically find something to be grateful for.
So many people are having difficulties and I am not alone. I never want to be self-absorbed and feel sorry for myself. I want to be appreciative of the breath I take,
the stairs I am able to climb, the walks I take. I can walk, talk, breathe, write, hope, and dream. God has big plans for me and I want to listen to his voice and follow the direction HE has set out for me. Let me be your servant, Oh Lord!
Let me focus on others more than myself. Let me be that person people feel comfortable sharing with because they sense the care and compassion that you have instilled in me. Let me be a patient and loving person and please take away all resentment, dissatisfaction,
and bitterness. Let your light shine in me at all times. Thank you, Father God, for where you have brought me.
I have been more than blessed this past week. Thursday I attended the Mat-Su Health Foundation as a scholarship
recipient. This incredible foundation awarded me $11,000 for my upcoming tuition and books. Graduate school is extremely expensive and I am so grateful that they found me worthy of receiving one of their scholarships. There were many of us
who were rewarded for the steps we are taking to further our education. They put on a spectacular event with amazing food such as lobster-stuffed tomatoes and shrimp! My belly was full and my heart was happy.
Friday I was working on a paper
when I saw an email come through. I clicked on it and could not believe what I was reading. I had been selected for a U.A.A. scholarship too! I received $5,000 from them which means my entire upcoming year is paid for! No more loans for me.
Hallelujah, God has blessed me and I am so thankful. I must do my best in school so I can get that diploma and use my knowledge and experience to bless others.
I kept the big girls last night and had so much fun with them. I am feeling good
for the moment which is nice. Ollie and Ailynn were on their best behavior. I picked them up over at Granny's and was able to visit with her, Meghan, and Boe too. Granny looks fantastic and so healthy although I noticed she has lost quite
a bit of weight which does worry me. She is having lots of problems with her memory. Ollie whispered to me, "she has asked you that three times!" It's a sad thing. We talked about it later and discussed how we would be patient with Granny
and simply continue to answer the questions as if we had not heard them before.
The kids said sweet little prayers before bed. Ailynn focused on how we should say nice things and not mean things. Isn't that the truth!? Our tongue is
often used as a sword to cut people down. It will take conscious thoughts to refrain from cutting others done. Building people up is the goal. I listened to Ollie criticize Ailynn in the car this morning and that is exactly what In I dropped
Ollie and Ailynn off to their parents in Sutton, Boe said, "Mimi, home!" I wish I could have brought her back with me, but the school work is piling up and I must get to it.
Last night Ailynn was taken by ambulance to the hospital.
Meghan went to put some food on the grill and Ailynn decided it was a good idea to put her mouth on the generator hose and inhaled a substantial amount of carbon monoxide. Meg did the right thing by driving her to the fire station just down the road
as she called for an ambulance to meet her at the volunteer station in Sutton. Patrick and I rushed to the hospital and she hadn't even gotten in a room by the time we got there. We kept Boe and Ollie in the waiting room with us while Kirk and Meghan
were with Ailynn. When we all got to go back there and I was in tears- as I had been since I heard. She was so tiny lying in that hospital bed and solemn as she could be as she recounted her story in her cute little three-year-old way. This is the same
child who poured chemicals over her body once, and the same child who inhaled chemicals in the hot tub. She is going to be the death of me!!!! We took the other two home with us and they picked them up about 11 PM after finally being released.
Her CO level was 50 when they first checked, and down to 10 when they released her. Thanking God right now is my top priority. Our precious little Ailynn scared us so badly.
Today we also celebrate Patrick. He is 53 today and the love of
my life. I am thankful for his generosity, hardworking attitude, determination, and so much more. I was going to get up and fix him breakfast but I didn't sleep well last night again- and I could not get out of bed this morning. I feel bad that I am
so limited with energy. He prefers to grill moose steaks tonight so I am not even cooking for him!
I invited Mom and Dad along with Meg, Kirk, and the girls over last night for Patrick's birthday dinner (that he cooked). Around
noon I got to feeling bad and had body aches. I had an appointment with the ENT in the afternoon. I continued to feel worse. He went over my sinus CT scan with me and told me my left sinus cavity is pretty impacted. He put me on a three-week regimen
of an antibiotic and a week of Prednisone. Now diabetes and prednisone don't mix well and I knew that from experience. As the birthday party went on I felt worse and worse. I had class at 7 and had to excuse myself to go attend via the computer. This
particular class we are required to be on video. By that time my eyes felt like there were porcupine needles gouging them and my nose wouldn't stop running. I could barely open my eyes. I am so embarrassed about how I must have looked to everyone. After the
class ended I had to go pick up my medication. I took my 60 mg dose of Prednisone and went to bed. Twice in the night, my sensor told my pump my blood sugar was over 300 and my pump sent off an alarm. Twice I took insulin the pump calculated I needed.
When I got up this morning and checked it again, it was 342 for a fasting BG! It continued to go up despite all the extra insulin doses. The highest it got today was 514 which is crazy. Now it's down to about 250. The crazy thing is I feel
fabulous today! The Prednisone worked quickly to help the sinus infection. I pray this is a long term relief for me and it actually cures this nasty infection I have had for about two months. I walked two miles today and mowed my yard and did school work.
I haven't felt this good in a very long time and I am thankful.
Father's Day, similar to Mother's Day, can be bittersweet for those who don't have fathers around, for those whose fathers have died, and for those who know their fathers
are likely dying soon and this may be the last holiday with them. I am incredibly thankful to have my father here with me on this special day. My father has always been my hero. He's been the one to encourage me to try things that helped
me expand my horizons and reach out of my comfort zone. I remember one summer in Indiana when he spent hours demonstrating how to do a back flip into the pool. I never mastered it because fear got into my way, but Dad sure perfected his skills!
My dad is brave and courageous. He's been all around the world doing mission work, he is an Air Force Veteran, and he loves my mom, his children, grandchildren, and great-grandchildren. I love my dad! I am very thankful for him, thank you,
God, for allowing me to be his daughter.
Yesterday Mom and Dad celebrated their 56th anniversary. I am overjoyed to have parents who have loved each other and lead by example on how to have a good, loving, and comfortable marriage for many years.
So many people simply give up when the going gets hard. My parents never gave up though despite many difficult things they faced in the past 56 years. I admire them both so much and many others also admire them and look to them for a Godly example
of how to be a happily married spouse.
I think of my husband today as well. He is working hard at the cabin and I am not there to make him breakfast in bed or to spoil him. Patrick went through the worst thing a father could ever go through when
Logan was diagnosed with leukemia, had a stem cell transplant, and subsequently died. When Patrick was sick, he lost his own father to a car accident He didn't know how to be a father because of a lot of remembered experience, but he has rocked
it all of these years. Dad gave Patrick a photo frame when Casey was born. It says, "A truly rich man is one whose children run into his arms even when they are empty." It took me years to truly appreciate the meaning but it is one I think of often.
My dad and husband have children who love them simply for whom they are, not what they can give them. I am thankful.
My mom and I met up with some wonderful people today at the Garden of Reflection and we planted many flowers donated
by Mark and Sharmin's greenhouse. The Garden looks amazing and I hope many people in our community begin to take ownership is this serene place and take a moment to reflect on the life of their loved one who passed away. The garden started
on a bare lot. We planted all the shrubs and trees many, many years ago. It is absolutely spectacular and I cannot wait to see it in a month when the flowers grow big and tall.
I stayed up until 0100 this morning working on homework.
(Due to exhaustion I had taken a three-hour nap during the day) I could not sleep and laid there til about 0245 when I finally dozed off. It wasn't but about 15 minutes when my pump notified me that my blood sugar was low. My first instinct was
to ignore it, then I reminded myself that the reason I got the 670 G closed-loop system was that I no longer feel my lows- or rarely do anyway. I got up and checked it and it was 57. I drank some milk because I was not hungry. About 15 minutes
later I received another notification. This time it was down to 54 so I ate a Rice Krispies treat. Imagine me so tired actually lying in bed as I forced the treat down. A couple of hours later yet another notification. This time my
blood sugar was 36! I felt that one. I was so out of it that I wasn't sure how to help myself. Patrick was at the cabin and I was home alone. I considered calling 911 because I wasn't sure I could take care of myself but thankfully God helped
me pull that off. I finally got out of bed about 0800 with just but a couple hours at the most of sleep. Last night it was 342 and my system had me overcorrect the high which caused me to go low. Diabetes can be pretty scary some times.
My hips have been doing really well and I am grateful for that. I think the OT is working finally! My sinus infection continues to worsen though and I have a deep cough and feel achy. I'm super tired and it's about bedtime
I haven't seen the girls for two days and I am going through withdrawals. I must see them soon and get some sweet little girl hugs.
My wish to see the girls came true as Meghan brought them over twice this week so
she could use my laundry facilities. The girls come in with the force of hurricane winds and they destroy everything in their path. My head spins the entire time they are here and then POOF, they are gone! I sometimes wonder if I imagined
them being there because it all ended so suddenly. Then I look at the food on the floor and the toys everywhere and realize I did not dream it. They were there. They are adorable, beautiful, and precious and I will clean up after them any day!
was supposed to have them tonight but I developed a hellacious headache while napping today. It took a few hours to go away and I decided it might be best not to have the little darlings over. I did not want to be grumpy due to pain. Tomorrow
Boe is being dedicated at their home church so I will pick Granny up and be there.
I had the most amazing dream about my Grandpa Marvin the other night. I felt his arms around me as he hugged me and told me he loved me. I’d
also like to have Logan come visit me in my dreams.
Baby Boe was dedicated at church today and we had five generations present. It was very nice to have Kirk’s family and our family here to witness a commitment to teaching Boe about Jesus. I brought
her and Ailynn home with me for the afternoon. I took a three-hour nap after they left. My insulin pump went crazy last night and alarmed me eight times between 0130-0630 so I was pretty tired.
It’s a special, special day
today because it is the day I gave birth to the most wonderful baby, Logan Joseph Marre. 32 years ago. He will forever be 11 in my mind and it’s hard to imagine him as an adult. He was more mature than many adults, but his cute freckled face made
him look like the child he was. Logan fought a fierce battle with leukemia. All was going well, and then he relapsed. We were told his best option was a bone marrow transplant. There were no adult matches for him but a cord blood match was
found. At the time, only 500 cord blood transplants had been done. A couple of months after his transplant, Logan developed a fungal infection and died. We didn’t give up hope he would survive until he took his last breath. It hasn’t
been easy living without him. Our hearts ache so badly as we feel the pain of his absence. Unless you have lost a child to death, you are unable to imagine the raw pain of grief that consumes you. His siblings miss him tremendously and there will
always be a void in their hearts and mind. His grandparents and family members miss him terribly and continue to honor his memory in many ways. His father and I miss our boy so much and after all these years we still find it painful to share stories about
his beautiful life. Logan lived life to the fullest. He was adventurous, funny, amazing, intelligent, kind, compassionate, and so much more. He loved Jesus and babies. I know he’s rocking all the babies in Heaven. Children adored him and
he was patient and kind with them all. He loved his brother and sister, his grandparents, family, and friends. He was a talented baseball and basketball player and loved practicing martial arts with his favorite uncle. He was an avid fisherman like his dad.
Happy birthday, Logan. You are always on my mind. The flowers and trees we planted for you continue to thrive. I smile when I see the beautiful blooms that remind me of you.
I pray there are many memories flooding our minds and hearts of Logan today.
Tonight I learned a valuable lesson after falling short on acknowledging kindness and honesty. Meghan left her wallet in a shopping cart. I did not know that. I was sitting in front of my laptop on the deck engaged in class. I am on video
during this class and it was three hours of sitting there with nothing to drink or eat. I had headphones on so I could hear. I had my phone in front of me and my security system popped up with a message that someone rang my doorbell. I leaned over the rail
and saw two teenagers. I figured they wanted to sell something. I yelled down that I was on a very important conference call- I didn't want to get into "it's a class and my grade depends on if I am sitting here actively listening." The girl called back,
"Did you lose your wallet?" I told her no. She was persistent and named off my address. I asked her whose wallet it said it was and she replied, Meghan. I thanked her and got her first name- Destiny but did not ask her for her phone #. Part of
me was afraid she would think I was some old lady creep, the other part of me was worried about getting back into that class. She and her male friend left after all I said, was "thank you so much for being so kind." That wasn't enough. I should have
made HER my priority because she made US her priority by driving to our house to deliver something. She did a valuable service tonight and I want that teenage girl to know we appreciate it. She deserves recognition for it and I wish I could find
out who she is.
Yesterday I drove down to the cabin by myself. Well, of course, Ringo was with me. There are many acres on fire- the Swan Lake Fire and traffic was at a standstill shortly after the Russian River. I thought
about the hard-working men and women fighting the fire and about the people whose homes are in danger. I tried not to think about how tired I was of sitting in the car but instead thinking about the bigger picture and what was most important. I hope
others were doing the same. Sure it inconvenienced me an hour, but some people were actually losing their homes! Priorities.... we need to have them and remember them. When I finally arrived, I took a nap on the deck while the sunshine warmed
my body and spirit. It's a beautiful day yet again. The birds are chirping, the sun is shining, and it's incredibly warm. Alaska is off to a fantastic start to summer. I find it difficult to be inside working on schoolwork when it's
this nice outside. It's also difficult to write papers here at the cabin anyway. I can think of a hundred other things I'd rather be doing. Priorities. Must make these classes a priority!
Patrick and I celebrated our 33rd
anniversary yesterday by driving to Homer on a fine, sunny day. The weather we have been having is absolutely incredible. It's hot, so very hot like we haven't seen in years. I believe today, in the Valley, it's supposed to get up to the high 80s.
I expect we will see the mid-80s here in Kasilof.
We went out to lunch on the Spit and then drove about 45 minutes to the end of the road that goes around the Bay, but not close to the Bay-we could see it at times and other times would just see
a bunch of trees. I was amazed at how many people live out there though. We were in my car and I was a bit concerned about going on the road where the "state road maintenance ends." I was even more nervous about going down the steep, steep, dirt
road that sharply winded around from one curve to another to get down to a beach that wasn't so beautiful because the tide was out. But it was an adventure for sure, especially when we had to drive back up the steep dusty inclines to get back.
We were in my Toyota Highlander, not his truck. We could smell the brakes on the way down the hill. My poor little "Gertie." I let her rest all night long to recover.
Yes, I had moments of fear and anxiety, but never once did I think
that my husband could not handle anything that came our way. I trust him completely and have the utmost faith in his ability to get us out of any dire situation. Thirty-three years of marriage has taught me that he is a man who keeps his word, a man
who will protect me to the end, and the man who has a keen sense of solving problems. I trust him with my life and for that I am thankful. So many cannot trust their partner nor do they have faith in them. God knew what he was doing when
he put this man in my life. We celebrated our anniversary yesterday, but every day is a celebration when one is partners with someone who has the ability to make their spouse feel special, loved, and important every day of their life. I am blessed beyond measure.
Mom and I went to a memorial service tonight for a woman who died way before her time. Jamie is the daughter of our friend, Care, who is a woman who has overcome so many trials and tribulations. Care has battled cancer multiple times
and has had countless surgeries and procedures. She has been sick all of her adult life, yet still manages to make others feel important and loved. When I was sick she showered me with gifts, cards, and messages. She is a gifted author and
a gifted speaker and the mother of two children: Tim and Jamie, and grandmother to Scott and Samantha. Last Monday, on Logan's birthday, Jamie- age 40 and pregnant with her third child had a heart attack and could not be revived. Not only did Care
and her husband lose their daughter, but they also lost their third grandchild. And Jamie's husband has been left widowed with two small children while he grieves the loss of his beautiful wife and unborn baby girl. Tonight was sad as we thought
about the pain that will continue to affect each family member and friend. Yet tonight brought lots of smiles and laughter as people described how amazing of a person, wife, and mother Jamie was. I did not have the opportunity to have ever met
her, but she sounds like she was fun and full of life.
Care asked me, "Does it ever get easier?" I honestly answered, "No, it doesn't." She asked again, rather desperately, "Never?" I again replied, "No, you will just learn how to deal with it better."
I wish I could have lied to her and reassured her that over time the wound from losing a child would be healed, but it's simply not true and I cannot lie. I miss Logan just as much today and when I stop and reflect on memories of him, my heart simply
aches with grief. That will never go away. How could it? He lived. He was loved. He mattered. Jamie mattered too, to many people, especially her little children.
A man I supervised in the correctional center, and
on electronic monitoring, died yesterday from an overdose. I liked Matt and we had a mutually respectful relationship. I remember several years ago when he blew up at me when I worked at PCC. He was frustrated. I understood that and
didn't take it personally. He apologized and from then on we had an amicable professional relationship. I saw him at church a couple of times over the years and assumed he was doing well. I haven't seen him for a few years and had no idea
he had continued following the path of destruction. When I read about his death today my heart sank as I wondered, "Will it ever end?" His is the second death in our community in the past couple of weeks due to overdose. The other gentleman
was also in recovery. My heart hurts so badly because I can't save anyone. I am beginning to wonder if I ever made a difference in someone's life or if I ever will as a social worker. I want to help guide people into recovery and I feel like
I can never do enough to make that happen. I want the best for everyone. I hate drugs and what they do to the brains of people.
We kept the three girls on the 3rd and I took them to the fourth of July parade on Thursday.
I made sure I explained to them that we were celebrating the birthday of America. It was so unbelievably hot. Ailynn was angry about the heat. None of the girls wanted to stand in front for candy unless I stood with them. I was only
about four feet from them and they didn't feel secure so of course, I walked up there with them and then snuck back to the bank. Ollie was the only one who stayed there but she wasn't being very assertive and it broke my heart to see her repeatedly bypassed
when the people handed out candy. Finally, she became a bit more assertive and got enough candy for the three of them to share. I enjoyed my time with them and also got to visit with Dorothy and her grandchildren. We reminisced about the
years when we had young children ourselves and would hang out at the parade together. Those were the days.
I have been working for hours the past couple of days on my family therapy paper. I do believe I am finished with it. I just need
a couple of people to edit it for me. I still have two papers in my medical social work class to write and haven't even started them. However, I have talked to a few people who haven't done any papers! They are all due in three weeks so hopefully,
we will all get them done soon. I usually have to fit a nap in there too which makes it hard. I want to be finished early so I can enjoy a relaxed summer.
Monday I have three medical appointments in Anchorage. I am going to be exhausted. I see
Dr. Spencer, then am getting some immunizations- my childhood MMR and Shingles, then I see a breast surgeon because Mayo noticed something odd when I had my mammogram. I also agreed to be the speaker at Fresh Start Monday night. I sure hope I can speak
well after being gone most of the day. I am not sure there will be time for a nap that day.
Ailynn had the best quote ever for me. She said, "Grammie, you don't have a lot of strong stuff, but you have a lot of brains." I love that quote!
Speaking at Fresh Start went well last night. I will never be able to claim to be a phenomenal speaker like my parents are, but using a PowerPoint presentation did help me stay on track. I wore my reading glasses and couldn't see the footnotes
at the bottom so part of the time I had to put my face right up to the computer to see which was a bit embarrassing! A couple of weeks ago I went to the eye doctor and was told I have cataracts and possibly glaucoma. On my FB support page for bone
marrow transplants, many people talk about the treatments causing cataracts. I do realize I am getting to the age that cataracts begin- but I think my treatment accelerated it a bit. They are supposed to call me after reviewing the reports from my Mayo
eye doctor over the past couple of years. Anyway, back to the sharing of my testimony. I spoke about how Logan's diagnosis and death affected me, how my diagnosis affected me, how Casey's drug use affected me, and how GOD WAS PRESENT and comforting
me through it all. I shared that sometimes things seem overwhelming and people can be discouraged, but we can change how we view our circumstances. I shared that I love God and while I do not like that he took Logan from me, I will be together
with him someday and I trust that God had his reasons and I will do everything in my power to make sure Logan is not forgotten by helping others. The same goes for Casey. What he has gone through is horrendous, but he loves Jesus and he is putting
a lot of effort into recovery. God will use his story for the good of others. Life isn't easy but it is doable when you have a personal relationship with Jesus.
I got my MMR vaccination yesterday. I didn't get a fever which is good. They
were unable to give me a shingles vaccination because I have to have a titer to determine which type of vaccination they need to give me. My appointment with Dr. Spencer went well and I had to say goodbye to her as she is moving out of state. Her
husband is very ill and they are moving so he may be closer to his specialized medical team. Dr. Spencer has been amazing and I am sorry to see her go. She is a woman of faith and one that shared her personal belief of God's power to heal me and
brought great encouragement to me.
My last appointment of the day was with the breast surgeon. Evidently, Mayo did not send the mammogram I had down there and compared 2019 mammogram with one from 2016 instead of 2018. So guess what?
I have to get another one! Yay for another medical appointment. NOT! This stuff takes up way too much of my time. But I am thankful I have insurance to cover it otherwise I would not be getting necessary medical care.
Meghan and Kirk
are celebrating their 7th wedding anniversary today. They are such a cute couple. They work together well, appreciate each other, talk nicely to each other, and are great parents. Meghan found a good man in Kirk and I am thankful he's a loving
husband and father.
I kept the girls Friday night and they were a riot as usual. Boe would not come home with me so I didn't get to keep her. She had just woken up and only wanted her mommy. She came into the house yesterday morning yelling
at me though. "MIMI! MIMI! MIMI!!" She is so cute.
I woke up at 0400 yesterday with spasms in my upper stomach which quickly spread down to my right lower abdomen. Ailymn and Ollie got in bed with me about 0800 and Ailynn said,
"Grammie, is it okay to touch you or will I get sick?" I told her I didn't think what I had was contagious. She said, "mommy and daddy tell me when I am hurting to walk it off." She saw me walk all hunched over and said to her Papa when he called, "Grammie
can't walk right and she can't just walk it off like my mom and dad tell me to do."
I ended up asking Mom to take me to the ER last night. They did a CT scan of my stomach and said I have an enlarged bile duct and colitis. I'm in so much
pain but at least the spasms stopped. It's ridiculous how many medical problems I have. It took five attempts for them to get an IV in me and two tries before they could get blood. :( This is getting really old!
I drove to
Kasilof last Monday night. I wanted to watch Casey play softball first. I am unable to go to his games due to having class on Tuesday nights so it was worth it for me to drive late at night after watching him practice. He is enjoying being on Set Free
Recovery Team. I'm happy he's back into sports. I got to the cabin about 0130. Patrick was sound asleep and never heard me unload the car or put stuff away. I think I finally went to sleep about 0230. Last night I had class and I also got
to visit with our friends from Montana, Sybil and Jim. Sybil and Patrick work for the same company and I have known her for many years. She is a delightful woman who loves God and has a sunny disposition. Her husband Jim is a friendly guy
who also loves God. Jim is a cancer survivor and Sybil has had multiple health issues but neither complain- they just focus on being together and doing the best they can. They love to travel and are determined to not let work keep them from what
they enjoy the most- being together.
I have to leave early in the morning so I can get to my specialist appointment in Anchorage. I'll get my stomach issue checked out and see what we can do about my situation. Hopefully, they'll tell me it's
a fluke and nothing further is needed. One can only hope.
One can dream.... The specialist was quite concerned and said, "You should have been here at the beginning of the week." I ate a rhubarb muffin and a banana at noon and saw him
at 1:15. I was told no more food. I started to prep for another colonoscopy at 5 PM and another at 10 PM. Last time I had a routine colonoscopy they were not able to complete it because the prep didn't work on me. So I went back in two weeks after two full
sets of prep. That's what I have to do now as well. I'm drinking my 3rd drink now and have to have another one in an hour. This stuff is so nasty I cannot stand it. I had a special kind of MRI this morning and had a panic attack and had to be pulled
out to take some deep breaths. I am very claustrophobic but usually, I close my eyes before being pushed in the MRI machine. I didn't close my eyes this time and panicked. Not a good feeling. I had to have an IV but thankfully he was able to get it in the
FIRST time! At 6 PM I am going to Providence day surgery to have the colonoscopy and an ERCP which is a scope that will be looking inside my bile duct. Evidently, my bile duct is 14 cm long and should only be 5. By the time I get to eat tonight,
it will be about 33 hours since my last food intake. That's not good for anyone, let alone a Type 1 diabetic. This medical BS is getting a bit overwhelming. I still have a paper to write!
My procedures didn't go exactly as planned. I
appear to have developed pancreatitis after the stent was put into my pancreatic duct. I had so much pain they elected to admit me overnight. I am still having pain so am staying an additional night. Thankfully, the pain is not constant, but it
sure is annoying, especially when I eat or drink. I went for 46 hours without food. I finally got to have some sugar-free jello. A few hours later I ate some cream of wheat. Neither felt good but at least I got some food in me. Mom brought my computer
into me so I can write a bit on my paper. Unforunately she brought the wrong power cord so I cannot write for very long. Hopefully I will get out tomorrow morning and then will have a couple of days to finish this paper!
erosions in my left eye last night have sent me over the edge. I’ve got to get out of this hospital and go home. I want to run away from all medical problems and never go back to where I’ve been. I’m tired of being limited, of hurting, of
remembering all the things wrong with me. I want to be free to move, to dance, and to live without pain. I want to help, not be helped.
***update. I did get out of the hospital and I am so thankful. I still hurt but at least I am home. Perhaps
tomorrow will be a better day. I'm worried about the stents being removed in two weeks. What if that causes me lots of pain too? What if something happens and more problems arise? I know......Don't worry about tomorrow. I am trying to relax but
it is hard.
Casey, Meghan, Kirk, and the girls all stopped by tonight so it was not boring around here by any means!
I slept fairly well last night but did experience some pain which I have continued to have. It is not unbearable.
I realized that we did not address how to manage pain when I was discharged at the hospital. I called my gastroenterologist to schedule the two-week appointment to go over the biopsy results and schedule the removal of the stents. The office staff acted
like they didn't know who I was, why I was calling, denied having any knowledge I was in the hospital for two days and the doctor is out of state for two weeks. I called my Anchorage oncologist who said they had no knowledge of reports of my hospital
stay. Mayo responded with, "See you in May of 2020. Wow. I could just slip off the face of the earth and no one would notice. With one exception that is, the breast surgeon's office called to ask me when I was going to do the diagnostic mammogram.
They called the imaging place for the results to find out I canceled the appointment. They are on top of things at least! I rescheduled for Thursday along with that follow-up sinus CT I was supposed to have. Well, I take it back. The doctor just
called me from his vacation. He said he doesn't know what is wrong with me and we have to wait for the biopsies to come back. He doesn't think the pain is from the strictures in my ducts. Well dang. This doesn't sound good.
that had the corneal abrasions was hurting badly today. I had OT and they focused on my shoulder. My stomach hurt all day and I was exhausted. I have been overwhelmed by all my problems. I visited with Granny and Meg and the girls came over which was
nice. I fell asleep on the deck today and when I woke up I decided I would mow the lawn. I'm fed up with feeling sorry for myself. I hurt the whole time I mowed but by gosh I did it! As SOON as I finished it started raining so the timing
The doctor's office called and said nothing showed up in the biopsies so they sent it to Mayo to review. I have an appointment with the gastroenterologist next Tuesday. I guess we will see what happens.
Care called tonight. Care is the one who has had everything under the sun happen to her. She asked me how I was doing and I told her I am fine. She told me to stop lying and proceded to tell me how I am feeling. She hit the nail on the head
because she knows better than anyone how frustrating medical appointments can be. We share a great faith in a God who can do miracles and I am waiting for both of us to receive one.
I had no idea I had gone so many days without
updating this blog. I’ve worked my butt off to get my school papers turned in. I have two classes left this coming week and then a three-week break that I desperately need. I arrived at the cabin on Friday. Patrick’s younger sister and her friend
are here visiting. We also have our nephew here. It has been a zoo but I’ve gotten some quiet time while they go fishing. They were out about twelve hours yesterday. I have read two books for pleasure and I’ve started a third. Today I felt
well enough to take Ringo for a walk- my first in a couple of weeks. My stomach pain is decreasing substantially and I am grateful for that. I see the specialist again on Tuesday.
I left the cabin on Monday so I could make my doctor
appointment on Tuesday. I did not want to go all the way back for that doctor's appointment, but that was the only time he could see me. He had the biopsies sent to Mayo Clinic and the results show mild GVHD in my colon. That is a side effect
of the bone marrow transplant. He called my local oncologist who told him to call Dr. Hogan at Mayo. Dr. Hogan is on vacation for two weeks so he didn't get to talk with anyone about what to do about it. He suspects since it is mild they
won't prescribe Prednisone. I certainly don't want Prednisone as it causes enough problems of its own. I still think there is something else going on they are missing as my stomach pain is in my upper stomach where my bile duct was enlarged. I will have
the stent removed on the 12th so we will see how I do after that.
After visiting Granny today I plan to go back to the cabin and will likely stay a week. I have such a short break from school so I want to take advantage of some R & R. I realize
I will also need time here at home so this may be my last big trip down there for a long time.
Yesterday a good friend had her divorce hearing after 34 years of marriage and I feel so sad for her. Another friend has an upcoming surgery on Monday
for one of her many chronic conditions. A young man is struggling with his residential treatment and walked away from the center and Casey talked him into going back. There are so many concerns in the world and I wish I could fix them all.
Patrick's very good friend passed away on Sunday after a long battle with liver and respiratory problems. We need YOU, God!