5/16/15- woke up at 0300 this morning. I'm not surprised since I slept so much yesterday. I feel like I'm getting a cold which is not good. Whenever I stand up I see white stars. I could be dehydrated again.
days and my parents will be here. But in nine days Patrick goes home for a couple weeks. I'm going to miss him. I get three bonus visitors while he is gone. Darlene, Dorothy, and Amy! Unfortunately that's probably the time I will feel the worst. But they can
read to me and rub my feet, lol. We will make the most of it. Soon it will be June and Meg and Ollie will be here along with my mother-in-law. I have so much to look forward to.
Today's Jesus Calling:
I am your Lord!Seek me as a friend and lover
of your soul, but remember that I am also King of Kings-sovereign over all. You can make some plans as you gaze into the day that stretches out before you. But you need to hold those plans tentatively, anticipating that I may have other ideas. The most important
thing to determine is what to do right now. Instead of scanning the horizon of your life, looking for things that need to be done, concentrate on the path before you and the one who never leaves your side. Let everything else fade into the background. This
will unclutter your mind, allowing me to occupy more of your Conciousness. Trust me to show you what to do when you have finished what you are doing now. I will guide you step by step as you build your way to mine. Thus you stay close to me on the path of
Oh Lord, I pray that these 100 days of healing proves to be a special intimate time getting to know you more. Let me not be afraid to share your love with others. Teach me to be patient and encourage me when things get bad. This is just a short
season in my life. You have directed and guided me during this journey. I know you will never leave me.
I am sitting in a room at Starion 94- that's the place I come to everyday for at least a month. I am hooked up to IV fluids and will be getting IV
potassium too. I got my anti-nausea meds but no relief yet. I still have to get my two shots too. How fun! I sent Patrick back to the house. Poor guy is cooped up way too long. He's going to do my laundry and disinfect the house. Everyday that needs done.
He's my superman. I'm listening to my praise music and thanking God again for the gift I have recovered.
5/17/15- Yesterday was a very long day. I was at the clinic for about five hours again. It's a full-time job being sick! Or should
I say recovery is a full time job? The anti-nausea meds never did get rid of my nausea. It became tolerable; particularly when I slept. I'm thinking about sleeping the 100 days away. When we got back, I slept for about four hours. I felt good while I slept.
I moved from the bed to the couch and managed to eat amother fantastic dinner Superman cooked for me. Afterwards I was lying on the couch and felt such restlessness I thought I would end up exploding. I had the trapped feeling I experienced when I was
in the hospital in Idaho for three weeks. I felt like running, but no energy and I was sick. I suggested we go for a drive to see the pond where Patrick has been fishing. As soon as I got in the car I knew I made a mistake, I was terribly nauseous, but determined
to stop whining and just go. When we got back I went to bed. I woke up so sick. I had a terrible headache and body aches. I was scared I was going to end up back in the hospital. Thankfully it got better. I tried praying but I couldn't get much out. God knows
my spirit. He knew who besides me I was praying for. I don't just ask for relief for me; I have lots of friends recovering from illness.
These 100 days are going to be hard. When I get discouraged, I read a text or a message someone has sent me. It
helps strengthen my courage and resolve.
Another five hour day in clinic. I needed saline and two bags of magnesium. I have reached "nater" with WBC. I am zeroed out: no immune system. I still have platelets and red blood cells so no transfusions needed
yet. They are experimenting with a different anti-nausea regimine and so far so good!
I am so thankful and proud of Patrick. He knows my meds inside and out and is a fantastic caregiver. What a blessed woman I am.
5/18/15- Day plus four.
96 days left..thank you, Lord that I was able to receive this transplant. Please protect me from infections while I recover. Help me to be grateful and appreciative and not sad because I don't feel well. Help me to rest in your healing and not be discouraged
because of how I feel. I trust you to protect me and help me feel better.
The day was hard. So hard that I asked for a wheelchair to take me up to Station 94. And I didn't even feel guilty about not walking. My BP is still really low and I lost
more weight despite the amounts I am eating. I was filled up with fluids and IV anti-nausea meds. I slept there, came home and ate a quarter Pounder with cheese! I haven't had one in probably ten years. I then took a nap. We went back tonight for more fluids
and more IV anti-nausea. Hopefully I will be okay in the morning.
It's rather ironic that we are watching Austin Powers.16 years ago Gary snuck that movie into Logan's room after transplant. I was out for the afternoon and they pulled it off. I never
would have approved of my 11 year old watching it! But here I am all these years later giggling because Logan got away with something and he and Gary shared that moment.
5/19/15- 0945 and been at clinic for an hour. I'm getting IV fluids, magnesium,
platelets, and IV anti-nausea meds. Today is plus 5- --95 to go. I woke up nauseated in middle of night and it's just kind of hovering.
I sent Patrick on some errands. He gets so restless, but never complains. He will be going home for a couple
weeks starting the 25th. My parents arrive on the 24th and I am going to request they bring me some homemade rolls from Granny. Hmmmm, she makes the best rolls ever.
We believe the radiation gave me the throat pain. I always forget that I feel the worst
a week or two after chemo. Add radiation to that and it's not pleasant. But I am alive! I have the gift of new life. I can't imagine that Leuk will ever dare to come near me again.
Yesterday my sister-in-law sent me pictures of my son, my niece, and
nephew planting at the greenhouse. I responded with "working with plants is such a healthy thing to do. Unless you are immune suppressed, then it can kill you." I thought I was pretty funny. I miss not being able to plant flowers, weed my garden, and
help in their greenhouse. Next year I will make up for it! I miss my family.
I am back at Station 94 for second magnesium IV for the day. Right now, as long as I don't swallow, I actually feel good! When I first got here I was pretty nauseous. Patrick
told me I had a big frown on my face. I'm glad he told me. I don't want to be a "Debbie Downer". Mind over matter! He made me homemade banana bread today. His first attempt at baking was a complete success!
5/20/15- the nausea left me last night and
so far this morning at 0400, I still feel good! It's amazing how my emotional health heals when I'm not physically hurting. I am so thankful to be free of the nausea. I pray the reprieve is long-term.
'Jesus Calling'- "Trust me here and
now. You are in rigorous training- on an adventurous trail designed for you alone. This path is not of your choosing, but it is my way for you. I am doing things you can't understand, that's why I say trust me."
Why are you in despair oh my soul? And
why have you become disturbed within me? Hope in God, for I shall again praise him for the help of his presence. Psalm 42:5
Therefore, I will look to the Lord: I will wait for the God of my salvation; my God will hear me. Micah 7:7.
Lord for the continued healing in me. I trust you. I have hope. I believe. Please be with all my friends who are sick. I pray for complete healing for them.
Today I was at the clinic for several hours. In the morning I received two liters of fluids
plus magnesium and IV anti-nausea meds. I came home, ate a little chicken noodle soup, and slept for three hours. Managed some mashed potatoes and cottage cheese for dinner. My throat is so sore that it's hard to swallow anything. Tonight we went back to the
clinic for another liter of fluids and more IV anti-nausea meds. This is my life. Swallow pills, get hooked up with IV's, eat what I can. I think I am doing really well overall. We walked to and from the clinic today and the exercise felt good. Tomorrow Patrick's
childhood friend Tony arrives! The best thing about being sick is friends come to visit.
5/21/15- My one week birthday! Day plus seven, 93 days left. I am trying to convince myself that a throat full of sores is better than constant nausea. If
I had to choose I probably would go with sore throat. Throat hurts bad but at 0530 I don't feel nauseous! These symtoms are from the radiation and chemo last week. I would say two more weeks and I should feel fairly well. That is, unless I get severe graft
vs. host disease. We won't think about that right now!
Back at Station 94 for magnesium and fluids. I was warned by a doctor that if I didn't increase my fluid intake I will be admitted. The last couple days I haven't been able to drink much because
of my throat. They keep wanting to give me narcotics for the pain. Narcotics make me nauseous. Why would I want nausea on top of nausea? No thank you! I will force the liquids down.
5/22/15- Day plus 8 -92 days left.
some people, a tenderloin is a cut of beef. In Indiana, it is a delicious piece of pork that has been breaded, deep fried, and served on bread. To some Hoosiers, tenderloin is just code word for “let’s go to Mug ‘N’ Bun.oh that caught
my eye!Mom and I were recently talking about a tenderloin sandwich. Anyone know where I could get one in MN? I guess they could put one on ice on their way back from Indiana. I'm so glad my parents are going to road trip to IN. It will be good for them to
see their friends.
Got another liter of fluids last night. When we got back to the house I started running a temperature. I had a headache and body aches. Patrick (aka superman) checked my temperature on the hour until 0330. When it went down,
he then slept. I am so fortunate to have such a great caregiver! He and my parents switch off on Monday. How can one woman be so loved? I am amazed at all the support and encouragement of so many.
Our friend Tony arrived yesterday. It's so good to see
him again. I told Patrick he should thank me for being sick because he gets to see old friends! In just 12 days Meg and Olivienne will be here! Ammie may have ordered her some toys to play with. Papa wants to take her fishing. I sure am looking forward
to having my MIL here too. We can celebrate Patrick's birthday together.
I am going to be completely healed. This is a rough process,but God will heal me.
When I got to the clinic today I let them know about all the white stars I was seeing.
It got pretty bad. Turns out my blood pressure was crazy low- even lower than normal. I got a liter of fluids and guess what? My nausea is on break again! I feel really really well! I just sat out in the sun for about ten minutes. Boy, life is good now.
5/23/15- Day 9/91 days
Last night was the worst night for me. I cried out to God and told him I could really use a break. Everything hurt. My right shoulder muscle and right side of neck is excruciatingly painful. I tried ice, I tried heat, I had
Patrick rub it- all to no avail. My throat hurt even worse. I consumed maybe five hundred calories yesterday. It's hard to eat when you can't swallow. I had body aches and a fever. I hope I have reached my lowest point because I don't have the strength
to repeat last night. I understand how Job felt when he had so many calamities. God, I'm crying out to you and begging you to help me recover. I can't do this without you.
The nurse practitioner took one look at me this morNing and suggested admittance
to the hospital. I, of course, said no. Then she wanted to look at my throat and I started vomiting. I agreed to be admitted. I don't know how long I will be here, but hopefully they can get me better soon.
The day has been rough. I spiked a high fever
and had body aches and chills. They took a lot of blood for cultures. Right now I feel fantastic! I even ordered dinner. I have hardly eaten in days because of nausea and throat pain. These moments of feeling good just cheer me up and give me hope.
was told I may be in the hospital for two weeks. We shall see..... The doctor did say I'm going to get worse before I get better. Not what I wanted to hear, but I guess I haven't hit rock bottom yet.
5/25/15- somehow I missed a day. My days are blurring
together. If it weren't for them writing the day and date on the board, I would be completely lost. Today is day 11-/89 left. Today I am going to start negotiating an earlier release. I'm pretty good at negotiating. My parents got in last night and Dorothy
and Darlene arrive tomorrow. Mom and dad wI'll drive to Indiana to visit friends and family.
I have this red glow oxygen sensor on my finger all the time. Rudolph, the Red fingered reindeer. Or maybe more like ET. Phone home..... For those of
you to young to get my silly jokes, my apologies. I didn't sleep much last night due to loud nurses who were in and out of my room every hour at least. The ANP told me this morning that they have one guy here who started engrafting at day 15 and another who
is at day 25 and still not engrafted. I vote for day 15!
5/26/15- Day 12/88. Last night was another night of Hell. I spiked yet another fever, vomited a couple of times, developed a strange rash from head to toe, and I'm swollen in my stomach and feet.to
add yet another thing, I had on a scale of 0-10 pain- 10 for my shoulder and muscular Pain. The nurse practitioner ended up giving me a massage which helped some. They have " complimentary massages" and my name is on schedule for first available appointment.
My blood sugars keep bottoming out. They made me drink juice to get it up and that's why I threw up that time. The first time was because they gave me a narcotic for my back and shoulder pain. I keep trying to tell them narcotics make me sick.
was up to .200 today. Wouldn't it be cool if I were already starting to engraft? These French babies may have strong cells! My ANC has to be five hundred three days in a row or 1000 for one day to be considered engrafted.
Darlene amd Dorothy arrived
this evening. Sure is good to have them here with me. They went to a Vietmese restaurant and are going to bring me back something yummy! Thursday will be two weeks! despite the many complications as I am having. I will continue to protect myself.
I want to win! I have been having headaches and suffering from my nose either being completely stuffed up, to running like a faucet, I told this to several doctors and no one seemed concerned. Today I was told they needed to do a CT scan on my sinuses. Several
hours later a doctor walked in saying he was going to put a camera up my nose to make sure I don't have a deadly form of fungus. Wow! Flashback to 16.5 years ago when we young parents were told "your son has a fungal infection and he's going to die".
He assured me I don't and I asked him to be sure.
5/27/15- day 13/87- Today Kelsey takes her test to pass her nursing Boards. I am sure she will pass on the first try. She's a smart girl. We are so excited for her and so very proud.
my WBC went up to 300! Here's some progress! I'm on my way. I think my Frenchies like my body. A lot of new area to explore!
I ordered a nice lunch today- meatloaf with mushroom gravy. I ate a couple bites and noticed the burger was pink. All the food
safety books on BMT's say ever eat any undercooked meat because it could kill me. I let my nurse know, who informed the doctors, and they all said they think I will be fine. Today also they removed peripheral IV that they put in because of all the extra fluids
they have put in me. In less than a week I have gained 15 pounds because of fluids. I am huge and covered with red dots everywhere.
Darlene and I went on a nice walk this afternoon all around the clinic. We went to the Subway level and checked
out some stores and got some sugar-free frozen yogurt to take back to the room. Now Dorothy is back from her appointment and we are going to have a big party!
After our "party" I had two hours promised for a nap with no interruptions . Lo and behold
after 30 minutes I woke with a horrible backache. Things just hurt everywhere and at very inconvenient times. It might be things are hurting because I've started the engrafting process. I hope so!
5/29/24- Day 14 it is about 0145 and it took me
about ten minutes to write the Date. I was in an excruciating amount of pain yesterday. They did an MRI and confirmed all the pain was due to engraftment of one of my little French babies! Yesterday I had an ANC of 280! Yahoo!
i have to sleep.
6-1-1;- day -18.My apologies for being incognito. Truth is, I have been very sick.
6/3/15- day 20/80 to go.
i have been one sick puppy. Vomiting, swelling, rashes, immense nausea, you name it. Today I felt good enough to ask for a day pass.
My medical team says if I do well they will release me tomorrow. I knew this was going to be hard but I underestimated it. Logan handled this so much better than me.
6/4/15- day 21/79- after 11 days in the hospital I was released today. I am thankful
to be out. I couldn't sleep the last two nights. I think tonight will be much better. I was talking to the nurse practitioner today and she was saying how pleased she is that my WBC went up so quickly. She told me how well I am doing. I promptly burst into
tears. All I could think about was how well Logan appeared to be doing too. He fought like a champ and I don't deserve to live anymore than he did. Yet here I am fighting so hard to remain here with my family and friends. Why should I be spared? But
I want to be.
Last night I asked God if he was keeping me awake. Was I supposed to be praying for my sick friends and those in need? Was I supposed to be singing songs about him? I decided to do both. I sang old time hyms we rarely hear anyMore. I prayed
for the sick and the addicted. I prayed for my family and I prayed for me. Sometimes I think I get too caught up in thinking this is my destiny and I have to grin and bear it.No more! I will not forget to fight.
6/5/15- day 22/78. Made it past three
weeks! Yahoo! "one thing I do, I press toward the goal for the purpose of the upward call of God in Christ Jesus."
To my dismay I had insomnia again last night. I finally went to sleep from 0330-0630. Maybe tonight will be better. My WBC count went
up even more and my doctors are thrilled. Platelets are back down to 8k so will be getting a transfusion tonight. Less nausea today, thank you Jesus!
Unfortunately my parents leave tomorrow. They were here when I was at my worst and very boring . But
Meghan and Ollie will be here tomorrow. I have such a good care team!
6/6/15- day 23/77. My chains are gone, I have been set free. I'm listening to my praise music with tears streaming down my face. Today didn't start off well. I was severely nauseated-
sitting on floor of bathroom dry heaving. When I tried to get up I hit my head on the sink. I am now in the clinic getting fluids and anti-nausea meds. Dorothy was right- listening to my praise songs does make me feel better. She tried to get me to listen
to music while she was here and I refused. She is such a good advocate. I was thinking about her, Darlene, amd Amy who recently visited. What wonderful encouragers and advocates. How blessed I am.
Meg and Ollie missed their flight. I can't be alone,
so Mom and Dad changed their flight to stay an extra day. I'm happy they aren't leaving yet! Today I get to see an old friend from Indiana for the first time in 32 years! I'm glad Eric cares enough to come see me. People are so good.
6/7/15- day 24/76-
meg and Ollie got to house about 0300. Ollie came running in repeating, "grammie's here, grammie's here!" What a joy!
I have had constant nausea today. It just won't let up. I try to eat, but I can't really choke anything down. I'm afraid they
are going to have to give me IV nutrition. Please pray the nausea goes away.
6/8/15- day 25/75- tomorrow they are going to stick a camera down my throat and biopsy my stomach. Plan is to find out if the reason I'm so nauseated and my WBC's are dropping
is because of graft vs host. I was less nauseated today thanks to prayers and a new anti-nausea meds. But it also put me to sleep all day. It hurts me that I don't have the energy to play with Ollie.
6/11/15- day 28/71- initial tests results came back
fine. Final should be in any day. I continue to be very weak and nauseous. praying for permanent relief soon. each day in the clinic seems longer and longer. Spent about 8 hours there the day before procedure. I had to get two double bags of platelets.
Yesterday we went to a thrift store and got Ollie a play kitchen , art easle, big wheel, and a swimming pool. She's having a fine time!
6-12-15-day 29/70- almost to day 30! Today I am feeling a bit more alive. Still lightheaded when I get up so I
have to shuffle around lIke an old Grammie. Nausea seems better today and I managed an egg for breakfast. Ollie seems to understand Grammie has to go to hospital a lot and take medicines. Yesterday was Patrick's birthday. I tried to give him a break last night
by having meg go with me to hospital. It's nice he has the support of his mom, meg, and Ollie here. I know it wears on him having to take care of me.
The final tests results from biopsy show mild GvH. So now I have a new medicine. Hopefully that
will help take care of the nausea. Unfortunately that med can make my blood sugars out of control so I have to be careful.
i apologize for not keeping up with blog. It's hard to find the energy. This is the hardest physical thing I have ever done.
i sat in shade for awhile today and then took a nice nap. Have to be back to clinic in bit for 2nd visit. Patrick made spaghetti and I am going to try and eat.
6/13/15- day 30/70- Today I don't feel as nauseated, but I am lightheaded. I'm also
very grumpy. Frankly I'm sick of this and just want to be done. I heard that one of the ladies I have been praying for is still sick at day 186. Lord, I don't have the courage to keep this up that long. Another girl I've prayed for is very sick after her second
transplant. Why is there so much pain and suffering?
This morning I was the first one up and heard Ollie call for mama. I took her downstairs and fed her cereal. She is so forgiving of my lack of energy. I will make it up to her by being the best Grammie
I can be when this is over.
i feel like such a burden on my family. It's not right that everyone's life has to be put on hold for me.
6/14/15- Day 31/69- Moving right along! I woke up very dizzy and lightheaded today so I'm sure I need
fluids desperately. I did manage to eat a bowl of raisin bran so there's some progress!
Im in the clinic and waiting to be seen. I just want to go back to bed. Meg wants to meet up with friends today at the zoo in St Paul. I hope we can make it
Meg amd Michele did get a nice break at the zoo and I'm so glad.
My BP was very seriously low so I got fluids and magnesium twice this day.it was kind of a blah day. I felt better so felt bored and anxious. Not good enough to do much, but
enough to wish I could. I craved a fish sandwich from McDonald's. Now McDonald's isn't a restaurant I frequent, but when something actually sounds good, I have to eat it. I keep getting told that I either start eating and drinking or I'm going to be put in
hospital for IV nutrition.
Going back to the clinic I heard one of my favorite songs."blessed be the name of the Lord, blessed be the name. When the darkness closes in, Lord, still I will say, blessed be the name of the Lord,
I feel good! Thank you Jesus! Today maybe we can go sightsee a bit!
we ventured out. I didn't last very long, but it was good to get out. Now it's time for a nap. My heart is heavy thinking about my beloved Alaskans having a forest fire so close to
i see all the sick people at the clinic and I realize how blessed I am. Things seem to be going well. But I just read that there has never been over a 25% cure rate. Until now I have avoided reading anything about statistics.
Back in clinic
for more fluids. I did so much better eating today. My dietician is going to be very happy with me! I finally see the light at the end of the tunnel. I look forward to being all better and helping others. I wish I were home helping those who have
been evacuated due to the fIre. I just haven't done enough to help others.
6/16/15- day 33/67-I am a third way through! Today started off rough. I was very dizzy and lightheaded. I am waiting for fluids. Every morning the vampires come in for
blood, then the CNA checks my BP lying down and standing, plus my weight. Then the dietician comes in. Today Joy was very pleased with my efforts yesterday. Then the fluids start, then the doctor comes in. Same old same old.....
Today I hope to
do a little more than yesterday. It's time to start pushing myself.
God's Word says there's no hopeless situation, illness, marriage....Our hope is the anchor of our soul ..the confident hope of Jesus Christ's return. (Jesus Today)
depending on God; he's everything we need. What's more, our hearts brim with joy since we've taken for our own his holy name. Love us, God, with all you've got- that's what we are depending on. Psalm 33:20-22.
Your life can
be good even when many things are not going as you like. You yearn to feel more in control of your life,but this is not my way for you. I want you to learn to relax more in my sovereignty,receiving each day as a good gift from me-no matter what it contains.
Remember you are not responsible for things beyond your control. Accept the limitations of being a finite person and keep turning toward me. Cease striving and know that I am God. Awareness of my face shining up you can Instill joy upon the most difficult
Lord, you know my limitations. You know how I feel. You know I'm not afraid to die, yet you know how badly I want to live and serve you here.
6/17/15- day 34/66-back in clinic very dehydrated. Overall I feel pretty well. I'm
listening to my praise music thanking God I feel as well as I do. I've felt worse. I know how bad it can get. I also know people in my situation have it worse than I do. Some don't have loved ones to care for them like I do. Some are rejected and alone. I
don't take your love and concern for granted.
How I wish I were back in AK helping those who have been evacuated by the fires. I want to help. It's a helpless feeling being stuck here when my neighbors are hurting. God, please send the rains.
I have been dreaming about getting a fungal infection like Logan did. I can't control my dreams, but I wish I could. I wish I would just dream about Logan being healthy. Wouldn't it be great to have him come and walk me through this in my dreams?
I am fighting to live. Why are so many trying to die? I got stuck by a dirty needle, the medicine (I'm convinced) caused me to get a rare form of leukemia. Then there are those who deliberately use needles to make themselves high and get diseases and die!
Do they not appreciate life? Life is precious.
Take me to the secret place where I can only see your face. I stand here in this place and see the glory in your face. I am taken by the wonder of your name. I'm desperate for your touch.
Ive never needed it so much. All I want is you. All I want is you.
Lord, please heal your land. Heal my friends who are sick. Quiet the minds of those mentally ill and contemplating suicide. Heal the addicted. Give them the strength to deny the
drugs and say yes to your healing power. Come LordJesus, come. Come and free us.
It's crazy,but I feel so good right now! It's amazing! How wonderful to have a break and to feel encouraged that there will be brighter days ahead when I feel good and
resume normal activities. I am so happy.
6/18/15- day 35/65
This morning was a little crazy when we realized my MIL left at 0930 today and she thought it was Sunday. I have to say she can get ready quickly! We are going to miss her so much. She
was so helpful and encouraging. She bonded so well with Olivienne. We loved having her and are sorry to see her go. We have enjoyed her so much. What a blessing to have had her with us.
I am back in clinic for fluids. Hopefully the new medicine will
raise my blood pressure so I can stop coming twice a day. it is getting old.
I had to return early to get red blood cells. First time in a few weeks I think . I found out they did this test called Chimerism and I am 100% donor cellular DNA! Praise
God! I'm also getting magnesium amd fluids. I had a biopsy on my hand today to see if it's graft vs host. I'm peeling like a potato Or a rattlesnake..
Patrick, Meghan, amd Olivienne are at the festival they have every Thursday in Rochester. I wish I
were with them, but I'm glad they are having fun. After getting blood and fluids I felt very ill. I was so nauseated and had a low grade fever. Thankfully it went away. Ollie ran into my room amd said, "I've been waiting for you Grammie!"
it looks like it's going to be a beautiful day. I feel so much better today. I'm at the hospital getting the usual fluids.
Today I went on a short walk at a nature park, went to Costco, and took a three hour nap. I feel successful!
Today I realized
some of the hardest things I had been dreading I completed. Radiation, catherization, not brushing my teeth for a month, Etc. I completed it all! I'm doing okay. The things I cared about, the hair, eyelashes, eyebrows, are gone. I don't care how I look. I
proudly display my bald head. I earned it! I'm going to be okay. God is great!
6/20/15- day 37/63-today has been an off day.I have an overwhelming feeling of exhaustion.. Perhaps the walk yesterday was a bit much. I'm starting to feel a little
bit better. Just in time to go back to hospital for fluids. Tomorrow is Father's Day and my dad is a long way away. I miss him. Normally I make Patrick a big breakfast and I can't do that. At least Meg is here to take care of her dad. Sometimes this seems
like it will last forever.
6/21/15- day 38/62- another off day. I'm nauseated and so fatigued. I vomited today. BP is extremely low again. I go back to hospital in a bit and also have to get potassium over two hours. I wish I felt good. Patrick, Meg,
and Ollie went fishing so at least they got a break from this.
6/22/15- day 39/61 I'm almost halfway to day 100. Unfortunately I feel like I took three steps forward and five steps back. I'm so unbelievably exhausted and the nausea is back. I'm
so tired of being at the hospital twice a day seven days a week answering the same questions. I'm so done with this. Tomorrow Meg and Ollie leave. I'm going to miss them so much. Meg has been a huge help and Ollie loves and accepts me despite my limitations.
I got to feeling a little better this afternoon, so what does an all-American family do on a hot day? We go to Wal-Mart of course. Ten steps in the store and I was sick again. Went to the car and the car wouldn't start. There is some issue with the
auto start that shuts down the battery. Jumping it didn't help. So I prayed as hard as I could and it started.
i came home and took a nap. Ollie came in to roll around the bed. I told her I would miss her when she goes on the airplane. She said, "I
miss Grammie too."
While I was napping I had a call that VM picked up. It was from a dear lady who has been fighting cancer for years. I simply ask you to pray for her. She hurts so bad and is so weary from the fight.
6/23/15- day 40/60- today
our girls left. It was so hard to say goodbye.
Today started off really rough with nausea and fatigue. Doctors are quite concerned. I believe it's the prayers helping me feel better. I tested positive for a virus. Now I have to have IV antiviral twice
a day. I'm also on a new medicine to help my GVHD which will hopefully ease nausea too. I had a breathing treatment today to prevent pneumonia.
When I think I can't take anyore, God sends me relief. Thank you, father for an afternoon without nausea.
I will praise you in the storms as well as the sunshiny days! You are my God and I shall forever love you! It doesn't matter what happens. You are my number one.
6/24/15- day 41/59
Today is Logan's birthday. He would have been 28 today. Today
won't be an easy day as I am going through the same thing that took his life. I love you, Logan and I know you are happy in Heaven. No other posts today. Today we honor our first born.
6/25/15- day 42/58
i love seeing these numbers change each
day. I'm so ready to be done. Two days ago I stopped getting fluids twice a day. Although my BP still drops when I stand up and my heart rate goes up, I want my body to learn to cope on its own. After these two weeks getting IV anti-viral, I hope to be transitioned
from outpatient hospital to the clinic. The clinic is twice a week! How wonderful that will be. I plan on healing up just fine and going home.
Today we may take a drive to Lacrosse, WI. We went there before but I was extremely nauseated from the
medicine given to put my Hickman line in. I did not enjoy that trip. I hope today will be better and we can get out and enjoy the outdoors.
Saturday my friend Faith will be visiting me and Sunday my niece, Michelle, arrives. On the 2nd, Patrick leaves
for a month and on the 4th, Mom arrives for a month. The changing of the guards. I am thankful for my good caregivers. I miss all of them When they aren't here.
We decided to go to Lake City and several surrounding small towns. What a great day to get
out! Even though I have to wear a mask and a huge hat for sun protection, I didn't care what people thought. I am so past how I look. Thankfully my husband doesn't care either. He took "in sickness and in health" seriously. I am blessed.
Today I am weepy. I'm not sure what's going on. I am overwhelmed with gratitude for the support I have. Who am I to deserve this? Who am I that HE is mindful of Me? I'm amazed at the love my God has for me. I am not alone.
Logan was sick he asked me to find a verse in the bible to comfort him. II Corinthians 1:3-7
Praise be to the father, our Lord Jesus Christ, the father of compassion and the God of all comfort who comforts us in all our troubles,so that we can comfort
those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over in our lives, so also through Christ our comfort overflows. If we are distressed it is for your comfort and salvation ; if we are comforted
it is for your comfort, which produces in you patient endurance as the same sufferings we suffer. And our hope for you is firm because we know just as you share in our sufferings,so also you share in our comfort.
Oh, Lord,my heart is heavy. I have such
a burden for the sick and the addicted. My heart hurts for my friends who are sick. I have three friends right now who are in terrible pain because of cancer. I have three other friends who just had skin cancer removed. I have a friend who has multiple issues
and is in constant pain. I know so many who need healing.
My heart is broken for those addicted to drugs. I pray daily for so many who choose drugs over God and their families. Lord,heal our land! Use me, Father, I want to be a comfort to others.
My chains are gone. Ive been set free. My God has ransomed me.
6/27/15- Day 44/56
We ended up going to a movie and taking a walk yesterday. It was good to get out, but I may have overdone it as I got very nauseous yesterday. At least I waited
till we got home to throw up! It was a bad night. I'm a little nauseous today and am lying in bed all day except for my two hospital visits. My friend Faith comes tonight and I look forward to seeing her.
Most likely I am nauseous from GVHD- Graft vs
Host Disease. It's in my gut. Let me explain it this way, my little French babies have 100% taken over my bone marrow. That's good. But the French babies want to fight my body. They are saying, " this is MY body, you don't belong here." My body is fighting
back and saying "I was here first!" And the turmoil in my stomach begins.......
Spent my day lying in bed. It helps. Just have to get up for second hospital visit today.
6/28/15- Day 45/55 and my 29th anniversary!
Still nauseous today
despite all anti-nausea meds. What a shame! I want to go for road trip but not sure I should.
Happy Anniversary to my awesome husband whom I love so much.
Counts are really good today. Platelets, ANC, WBC- all normal! Tomorrow I will get
the virus level checked. Today I fought the nausea, but managed a good day with Patrick and Faith. We went to Lacrosse WI to the bluffs and took some pictures.
My talented DIL painted our mailbox stand as anniversary present. It looks so good!
6/29/15- Day 46/54
My niece Michelle arrived and already started disinfecting house. Shes a good caregiver and will be a good nurse. Tonight she starts clinicals- Home Health is coming to teach us how to do IV meds at home so I dont
have to go to hospital twice day. She will have a jumpstart when she goes back to school next week and actually does clinicals.
Today I had a bone density test. Seems the steroids put me at high risk for bone disease. I don't think it will be an issue
though. I refuse to believe all this crap they give me will cause long term damage.
The steroids though have wreaked havoc on my blood sugars. I am no way in control right now. Trying to get that straightened out. That's temporary problem which, I admit,
could cause long-term problems if I don't get a handle on it.
6/30/15- Day 47/53
Yahoo! Almost half-way done. Tomorrow I see Dr. Hogan to discuss the last half of my treatment. I truly hope amd expect I will be one that they let go home
early. Even if I have to come back at day 100 for bone marrow biopsy and further testing I would be okay with that.
My virus level went way up. It's frustrating because they delivered all the medication last night and today changed the dosage.
What a waste of money.
Today we took Michelle on a road trip to Nelson, WI. We went to the Creamery and bought some cheese and had lunch. It was her first time in WI. She and Patrick went fishing. I'm supposed to be napping, but at least I am
"resting". I just ate a bowl of cereal for a snack. I've gained two pounds!
Meghan just sent me a cute video of Ollie telling me (pretending to call) that she was making "Ollie's soup". So cute! I miss them. If I weren't so far from home I could take
a few days I bet to visit.
I had quite a bit of nausea today but right now I feel okay. God is great!
7/1/15- Day 48/52
I waited till end of day to update because I had so many appointents today. Dr.Hogan was my last one. We talked
about my virus that isn't cooperating, and my GVHD. I may have to get another endoscopy to see if GVHD is worse or if virus is also in gut. They keep talking about putting me on steroids, yet I do not want prednisone. The steroids I'm on now already messed
up my blood sugars so bad. He's giving me till next week to feel better. If I'm not, a scope will be done again.
Overall he is quite pleased with my progress, as am I. My babies took over nicely and mostly things are on track. I ask for prayer to get
GVHD and virus under control quickly. I did get transferred to Charlton 9 so no more daily hospital visits, praise God!
7/2/15- Day 49/51
Tomorrow is half-way there! Wow! I am just finishing up my morning home infusion. My caregivers sleep
in so I just hook myself up. Michelle gets nights. Today Patrick leaves. I'm trying to be brave. How do I say goodbye to him? It's going to be so hard. He takes such good care of me. He cleans the house, cooks for me, and helps me with everything. He sure
can use a break though.
Yesterday I was told it will be about a year before I feel normal again. That was a disappointment. No gardening for a year either. And I have to get everyone of my childhood Immunizations again.
I admit there were tears
after Patrick left.
7/3/15- Day 50/50
Thank you, Jesus! I made it to half-way mark. I woke up this morning at 0500 feeling so happy and grateful. I am so very blessed. I have a savior who loves me and a whole bunch of family and friends
who are supporting me. I am so grateful that we have money to pay our expenses down here, that I have awesome caregivers, that I'm in the best place for treatment, and I am overall doing well. God is faithful.
Yesterday Michelle and I walked to Mayo.
I humbled myself and borrowed a wheelchair. She pushed me around the Thursday festival and back home. I was able to get a little exercise, enjoy the festival, and not tire myself out. God has humbled me for sure. I am no longer insistent on doing things the
hard way. I will still work on rebuilding my strength, but I will be smart about it.
7/4/15- Day 51/49
Less to go then there are days to continue. The way I felt yesterday and this morning concerns me. I spent most of my day in bed resting
because of the nausea. Today I woke up at 0345 with body aches and nausea.
Today is the 4th of July- God Please Bless America! We have choices on how we can be good stewards of our land. We have a choice on how we can treat our fellow Americans.
We have choices because we live in the land of the free. We are free to be different and we have a right to not be judged by anyone but God. We have a right to complain or we can decide to accept our circumstances. We can be angry or happy. I choose to be
happy and accept my fate, but I will fight as hard as any American can to destroy the war that goes on inside me. My friends with illnesses;fight as a soldier would!
And to our soldiers, I am grateful for your service. You are protecting ME and
you don't even know me. God bless you.
Today's Jesus Calling ends with this: " The greatest blessing is nearness to me- abundant joy and peace in my presence. Practicing praising and thanking me continually through this day."
How fitting! Our
country was founded on Christian principles. Let's not let go of that. God runs this nation. Let's be good helpers.
7/5/15- Day 52/48
I confess I have been secretly resentful looking at normal people just walking around and having fun. I am ashamed
of these thoughts. Jealousy for good health has no business being with me. I do not know if these "healthy" people are really healthy! They may have constant pain, illnesses, money issues, maybe they are abused, threatened, in danger. Maybe they are just healthy
and happy! I thank God if that's the case and I ask forgiveness for my jealousy. It's not like me to feel that way. Satan has planted the seed but I won't let it grow. My nature is to be happy for others not resentful. Please forgive me, Jesus.
was an amazing day. I felt so good and Michelle and I did so much. We walked to and from the hospital for my exam and blood tests. Almost all my blood tests are normal! We went to the mall and to walmart. I ate good meals. We stopped by Red Lobster so I could
buy biscuits. They gave them to me for free! There are good and caring people in the world. We could see the fireworks display from our window at the house. My Mom arrived! So many blessings.
Jesus Calling today, " Draw near to me with a thankful heart,
aware that your cup is overflowing with blessings. Gratitude enables you to perceive me more clearly and to rejoice in our love relationship."