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.

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 I 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 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 for me.

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.