So it begins. I am waiting for my first appointment. I am an emotional wreck. I feel like such a cry baby. I can't hold back the tears and I don't even know why I'm crying.
Turns out my blood sugar had dropped to 44. That can explain part of
my emotional collapse. I can't eat for quite sometime because of the testing. It's pretty hard on an insulin-dependent diabetic. I got to eat in between having 17 tubes of blood drawn and my bone marrow biopsy. When I had talked with the lady scheduling the
appointment, I told her about the pre-meds Megan gave me. Since the procedure is done awake they had given me a pain pill and anti-nausea meds to counteract my reaction to the pain pill. The lady did not relay that information to anyone, so my bone marrow
biopsy was done with just a local. The nurse doing it was really nice, fast, and efficient. It hurt, but was over quickly. I then was able to sleep for two hours while getting IV fluids. Now we are waiting to see the allergy doctor. Evidently the medicine
they like to use post-transplant is the only one I am allergic to. They are going to try and desensitize me.
My labs are better than they were on Saturday. My WBC is up to 1200 and ANC is 310. Progress is good. No blasts were found on peripheral
smear. That news is encouraging, but until Friday, I won't have the final report of the biopsy.
3/18/15- Last night was excruciatingly painful for me. With the exception of the first bone marrow biopsy I had, none have been as painful for me as
this one. I am having a hard time walking and sleep alluded me. I could not get comfortable. It was a huge production getting in bed, let alone turning over. I can't figure out what the difference in soreness is from. Biopsies 2-5 were done by Megan and while
I had some soreness, it was mostly unnoticeable. I look like a little old lady as I hobble around.
I think today we will be more comfortable going from one place to another in the palatial kingdom of the Mayo Clinic. Right now we are going to start
Oh what a day. We have been at the clinic for ten hours. I have had an electrocardiogram, chest x-Ray, sinus x-Ray, renal testing, a meeting with the bone marrow coordinator, a doctor visit, and IV fluids and blood tests. The good news
we got today was yesterday's bone marrow biopsy showed no signs of leukemia cells! Although that is super good news, we still don't know if I am in remission. My counts have to be up to tell for sure. The other good news I got is I get to go home for a visit
next week! It's unsure how long I can stay but probably a couple of weeks. I am so excited I can hardly stand it! We were warned that the chemo and radiation before transplant will be like nothing we have seen yet. I need this break to prepare mentally.
We are getting used to the big facility and are finding the people we encounter seem to have a compassionate heart. We are thankful for that. What I am not getting used to is how tired, exhausted, and sore I feel. My bones and muscles just ache and I find
it difficult to walk. It really wreaks havoc on my moods as I am so used to walking quickly and efficiently. Dr. Hogan suspects it might be from the weight loss changing my body structure. I have lost about 20 pounds. My legs are so skinny that I can put both
hands around them easily. I don't like looking in the mirror because the mirror mocks me, showing how sick I have become.
3/19/15- 0430 and I can't sleep. I was so exhausted last night that I had to leave Patrick sitting at the table while I rested
in the car. You would think my body would just keep resting when the opportunity arose. Our day starts at 0900 with an echocardiogram. After that will be more blood tests and fluids. The appointment I am dreading the most today is the spinal tap. As of yet
I have not had to have one. I watched them done to Logan on a regular basis. I hope they allow Patrick to be with me. Having someone there during my bone marrow biopsies helps tremendously. I know it will help during the spinal tap too.
been an amazing support. He sits and waits without complaining. He finds something encouraging in every bit of news. He is hopeful and that's what I need right now. Yesterday he gave one last attempt to protect me from further pain by asking what would happen
if I didn't have the transplant. The doctor emphasized I would have a minimal chance of survival. Leuk is very aggressive and he wants to kill me. We will arm ourselves with medical technology, strong meds, and radiation to fight back. Leuk is not a worthy
opponent. He may be strong, but we will defeat him.
My resolve has been shaken in just a few hours. I feel defeated. Maybe Leuk will win after all. My increase in counts diminished greatly today. All the progress I made is gone. I can't go home on Tuesday.
I try to be brave. I try to remember God is in control, but right now I feel defeated. I need a break and for some reason I am not getting one. I haven't been home in four months. I just want to go home.
I am waiting for my red blood cell transfusion.
I've already had a platelet transfusion. In between transfusions I had my first lumbar puncture. Logan had dozens and I always hurt for him. Part of me believes I deserve to have leukemia because my son had to endure all the same things I am going through.
The other part of me fights it because I have two other children and a grand baby to live for. Not to mention my husband, parents, granny, brother, and all my family whom I love so much. When Logan said its not fair anyone has Cancer, I agree with him. When
I get angry or frustrated I think about all the moms out there who are suffering because of their childrens diagnoses. I ache for all of us.
3/20/25- Yesterday was an eleven hour day. I hope today won't be as long. I was told to be here at 0730 this
morning for a special blood test. I reported to the desk and was told to report to room three. I am sitting here in this cold room and no one has even acknowledged me. Today I feel nauseous. I have a slight headache due to the lumbar puncture yesterday.
I again felt disgusted looking in the mirror at the shell of a woman I used to be. I feel so vulnerable and fragile. As I was walking up to Station 74- my new home away from home, I decided that no matter what I look like or how I am feeling, I will believe
I am healed. I will no longer walk in fear. I will believe and trust God no matter what my body tries to tell me.
We had another full day of appointments. Our day ended with an appointment with Dr. Hogan. He was encouraging about my counts going up
soon. He told me to stay hopeful. All my tests came out well. For a woman with leukemia and Type 1 Diabetes, I am very healthy! He said if my counts continue to show an increase I can go home for a week. If they don't, I won't be able to. He's hoping we will
start this process of transplant in the next few weeks. It's going to be a long and difficult process, but as Meghan told me, I will just focus on each day so I don't get overwhelmed by the whole process.
We checked out of the hotel and moved
into a house we plan to rent during our stay in Rochester. The house is lovely and is within walking distance of the clinic. We met the owner tonight and he is a really nice man. We look forward to meeting his family too. I was told today that they expect
me to be walking on a regular basis and adding in other exercise as well after transplant.
I keep thinking about my beloved job and how much I miss it. I have to fight back the panic at the thought of losing it because I will be gone so long.
Not only will I miss the work and my co-workers, but losing insurance will devastate us financially. I keep telling myself to trust God as I know he will provide for all of our needs.
3/21/15- Today is Casey's birthday and I wish I were there with him.
His favorite meal is ribs and how I long to cook for him. The world I know keeps on going even when I am not there to participate. Thats the way it should be, but I hate missing out on the every day lives of my loved ones.
Today is Saturday and
we have an appointment at 0930 for blood tests and maybe fluids. They can't figure out why I need fluids everyday. I had to buy compression socks yesterday. Dr.Hogan is hoping that will help increase my blood pressure and alleviate they symptoms I am having.
Finally some good news! My white blood count went up to 1000 and my hemoglobin went up as well. Platelets went down to 50,000 and ANC dropped to 310. Despite the drops, I feel encouraged. They elected not to give me fluids today and I have tomorrow off!
We are going to take a walk in a few minutes so we can become acquainted with the neighborhood. I feel really well today and I am so happy about that.
We got a walk in, but I was so cold we didn't walk too long. It's only a 9 minute walk to the clinic
from this house which is terrific! After our walk I took a nice, long nap.
Meghan bought her ticket to come here in May. I am so excited about that. Hopefully I will be home next week and that will hold me over till we visit again in May. I hope
to have many visitors while we are here.
3/22/15- Today we are going on a road trip. After keeping a mundane schedule for the last week, I have decided to be spontaneous and carefree. For a moment we can imagine we are just a couple people going on
a day trip. To me it's like finding the pot at the end of a rainbow, because we will be reunited with friends I hold dear to my heart. Back in 1998, while at the Ronald McDonald House, we met Tim, Diane, Jennifer, and David. I was instantly drawn to this neat
family. They were warm, kind, friendly, and just plain nice. When I looked into David's eyes, I saw nothing but goodness just flowing out of him. The feeling was almost tangible. His soul was filled with goodness. He reminded me so much of Logan. I watched
how he and Logan treated the younger kids. They were both so kind and were loved by everyone there. David had Ewings Sarcoma which is a bone cancer. After a time they went back to Altoona, Iowa as there was nothing else the doctors could do for David. I will
never forget the day he died. I grieved for him, my heart hurt for his family. This young, beautiful boy with his kind soul was gone. I hesitated to tell Logan. I wanted to protect him from the pain of losing his friend. But I decided he deserved to know.
I called other members of Ronald McDonald House out to the garden and we held our own memorial service for sweet David. Four months later, Logan joined his friend, David. Both boys loved to fish so I think about them fishing and hanging out just being
boys and having fun.
Since 1998 I have seen the Burget's twice; once when my mom and I took Meghan and Michelle to Iowa, and once in Alaska. It will be good to be reunited with this family whom we share a bond with. No one can understand the pain of
losing a child except another parent who has lost one.
3/23/15- We had a wonderful visit with our friends. It was good to get out and do something non-hospital related. When you think of someone being just three hours away, it seems like nothing.
But when you multiply that by two for the round-trip, the hIney starts hurting from all that sitting! We stopped in the historic district of Ames on our way back to Rochester. I really liked that town. I love a town with a good downtown area, especially a
small town where everyone knows and cares about each other. I may not live in a small town anymore, but I can't forget that the people in my town love and care for me too. Even though the Mat-Su Valley is so spread out, there is compassion and concern for
neighbors. Last night I had this incredible dream that hundreds of people in the Valley laid down and everyone was touching arms and were connected to me. I was filled with the love and strength from everyone. I could literally feel the heat pulsing through
my body. It's so awesome to have the love and support of so many.
Today I am anxious, nervous, and excited to see if my counts are going up. If they are, then the Mat-Su Valley will be getting us back for a week or so!
Our first meeting of the
day is with the radiologist who will be determining the rate of the total body radiation I will have before transplant. This is what I have been dreading the most. I remember Logan's experience with pre-transplant radiation. He got very ill with a migraine
and vomiting. It's important they use the highest dose of radiation my body can tolerate without being permanently damaged. All cells in my bone marrow will die before transplant. The hope is the new cells will take over and fail to produce malignant cells.
Although they never found a match for me on the national registry, they did find two cord bloods that will work. History is repeating itself as that was what Logan got too. The good thing about using cord blood is there is less graft versus host disease.
GVHD is when the new stem cells attack my body telling it that its a foreign entity- they are in control now! GVHD can cause mouth sores that go all the way into the organs of the body, skin rashes, eye issues, etc. it can be temporary or permanent. Some people
are disabled for life after having GVHD. The bad thing about getting cord blood is it takes longer for engraftment so my immune system is suppressed even longer.
Since there was no match for me I had hoped we could use Casey's stem cells and mix
with cord blood. He is a half-match for me. However, they don't have a study going now to do that. Since there is no study, they can't use the highest level of chemo and radiation pre-transplant. Because Leuk is so aggressive, they want to fry him. I will
have a better chance of defeating him if we zap him and poison him with the strongest doses my body can tolerate. Casey and I are both disappointed.
I just met with the radiologist to hear about the plan they have for me. I will have radiation two times
a day for three days just before transplant. I heard about all the horrible damage full body radiation can do to me. I heard about the side effects-nausea, mouth sores, fatigue.... All I can say is this process sucks.
But here is the great news! My
WBC went up to 1100 and my ANC went up to 420 and I get to go home Wednesday night! Thank you, thank you, Jesus! I don't know how long I can stay yet, but I am beyond excited.
3/24/15- Today I had my bones measured so they could "custom fit" radiation
doses for me. Ugh, I don't even want to think about that. I will likely be in-patient when it's done because it will be given at the same time I am getting high-dose chemo. At least being in-patient means I will be able to get IV anti-nausea meds around the
I had labs done today and my WBC and ANC remained the same. My hemoglobin and platelets both went down. I am getting a platelet transfusion at 0800 tomorrow. I am still set to fly to Alaska! Our plane leaves around 5:30 pm. Casey will be
picking us up. Tomorrow I will be home in my house, with my animals, sleeping in my bed. I am so grateful to God for making my counts rise so I may have this opportunity.
3-25/15- Today I get to go home. Tonight I will be in my house! Tomorrow I will
see my family. It has been four months since I have been home. I am so excited! Right now I am in a bed at the clinic waiting for the results of my counts and waiting for a platelet transfusion. My platelets were down to 30,000 yesterday and the decision was
made to boost me up today before we fly. Unfortunately I am quite the klutz and I am always running into something which causes me to bruise. That doesn't help. I was hoping to be able to have my teeth cleaned while I was home, but because of my low platelets
and white blood cells, I will have to wait even longer. There are so many things to consider while going through Cancer treatment. I keep reminding myself this will not last forever. By the time I am done, I will have been gone from Alaska about ten months.
Right now it seems like an eternity.
My platelets had dropped down to 27,000 so it's a good thing they ordered a transfusion. The good news is my WBC is up to 1300 and ANC is up to 490! Hallelujah, we are on the right track.
3:30 pm.- we are
checked in and waiting for our flight. My dad and brother both have colds and have warned me that many are sick in Alaska. I will be diligent in keeping myself protected. I was told any sickness will delay transplant. Leuk is too aggressive to delay anymore
than we already have due to low counts. As much as I dread this next step, it is a necessary evil.
3/26/15- I am home. I have dreamed and imagined what it would be like and I was not disappointed. Casey and Kelsey picked me up and it felt so good to
be back with them. Everything I saw on the way home was familiar and perfect. When we pulled up to our home, I felt satisfaction and happiness. I felt comfortable. I was back in the home where we raised our three children. The home where hopes and dreams were
both realized and denied. The place where laughter intertwined with sorrow on occasion. My house isn't just a building; its a home. A home where I can be safe. I am content.
Last night both dogs were so excited to see us. Of course they both had to
sleep with us. I had almost forgotten what it's like to have to mold my body in a twisted position so my babies can sleep comfortably. Despite the yoga positions they forced me in, I slept well as my mind was able to shut off and relax. This morning as I sit
here, I keep thanking God for his faithfulness. Without him, I wouldn't have this psychological break before transplant. Thank you, Lord, for increasing my counts so I could come home. Please keep me safe and protected before transplant. Please don't let me
get sick as transplant will be delayed. Please keep increasing my counts so I can fight off infections. Help me to be a light for you. Use my experiences to help others. And please give Logan a hug from his momma.
I had to laugh when my brother started
texting me about staying away from sick people. He even put on Face Book thst no one should be around me if exposed to a sickness and everyone must wash their hands before touching me. Mom wrote a note and taped it to my door stating the same things. She even
bought hand sanitizer for people to use and wipes for the door knobs. It's so nice to be loved and cared for. And they are 100% right. I simply can't be put in danger from an illness. I can't imagine being home and stuck in a hospital up here instead of sleeping
in my own bed. That would stink!
I have spent my day with my daughter, granddaughter, and granny. I have had so much fun but I am exhausted! Who knew a nineteen month old could wear me out so much? Granny has spent the day with me because she worried
I would over due It. I have some family members coming over to visit in a bit. The ones who aren't sick anyway!
3/27/15- Up at 0430 this morning. I am so happy to be home that I just can't stop smiling! Yesterday was exactly how I imagined it
to be; I was surrounded by my loved ones. We had a lot of family over last night and I feel so loved. I was talking with my cousin, Matt about his upcoming liver transplant. He also will be going to Mayo. However, he doesn't know when that will be. I told
him I wish it were at the same time as my transplant so at least we could be together. That would probably make the family feel better!
This morning I will be going to see Dr. Lawson at Midnight Sun Oncology. Dr. Lawson took care of Mom when she had
breast cancer. He is going to take care of me while I am home. I am praying my counts came up since Wednesday. I would love for them to fully recover before they knock them back down before transplant.