I know too much about AML

My husband, Billy, has genetic mutations that are ‘driving his disease’. These mutations are FLT3 and KMT2A. He’s been taking Gilteritinib for the FLT3 – it is a FLT3 suppressor. There’s a clinical study for a KMT2A suppressor at IU Simon Cancer Center. Billy goes there to be assessed for the trial in 2 days. Funny thing, though. He just had a bone marrow biopsy and it came back with no detectible blasts and NO genetic mutations. None. I know that mutations can come and go, but it still feels like a miracle. I pray every day for God to heal Billy. I know He can. Maybe He did? And Billy is supposed to start chemo round 4 in 3 days. All this treatment for a man who is in remission. I know too little about AML, I guess.

We just went to New Buffalo, Michigan last week. We rented a big house and all our children, spouses and grandchildren plus Billy’s sister came and we all stayed together for four wonderful days. We swam in the lake which was cold but bearable. Our oldest son booked a fishing trip and they caught a big salmon and a lake trout. Four of the grandkids went. They all had a blast. We rented a jet ski and my daughter and her husband rode it to the beach and the kids switched off driving it with spouses and grandkids as passengers. Billy and I walked all the way out to the markers and I jumped the waves. He was very fatigued and his muscles all hurt all the time, but he did really well. We ate dinner out every night and had fun. I’m ready to go back. I wish we could all be together all the time like that. I wish summer wouldn’t have to end.

The side effects of Gilteritinib are what is making Billy feel so bad. I don’t know if they can reduce the dosage but I’m going to ask.

I’m grateful for our vacation and my family. God, please heal Billy. ❤️

Chemo Round 2

The first day of Spring. The temperature will reach 74 degrees today. It’s a day made for hiking. motorcycling. bicycling, or just sitting outside with the sun warming your face. But for Billy, it’s the first day of IV chemo, round two. He’s lying on the bed, calm and even sleepy, while Decitabine drips slowly through the clear plastic tubing to his port. Poison. Or Cure. I’ve been praying the treatments won’t be bad, that he will be strong and well, that the doctors will be given divine guidance in deciding his treatment, and, most of all, that all this will result in a cure for the AML. Billy will have 2 oral chemo pills to take, too. One he starts today, the other after the IV chemo round is done. Please God. Please.

Sunshine like golden hope pours through the window, warming Billy’s legs. I can’t wait to get out of this office. We have been here for hours. I want to take him out to walk in the sunshine. To thank God for this day. This first day of Spring.

The drive to Indy

When we leave the sky is black. There are stars in the sky and they seem cold. Probably because the air is frigid. Heading east, the sky lightens to gray with streaks of purple smoke. As we travel on, orange creeps up from the horizon and we know that the sun will rise again today. The world is still turning.

I used to have dreams where I could fly. But when I flew, if you could call it flying, I felt the heaviness of my body and it was my will and faith that lifted me from the ground. I would rise slowly and I always had to move my arms, almost in a swimming motion, and I could rie to the treetops, maybe a little above, but never into the sky. I could never fly very high or very far. I’ve always wondered why I have the dream. And I often have dreams where I’m in an old house, sometimes the same house dream after dream. Sometimes the house is haunted; in fact it usually is. The haunted portion of the house is always on the third floor, or in the attic. Possibly because when I was a child in kindergarten we lived in a house that was purportedly haunted, and it was reported that a previous owner had hanged himself in the attic. I guess I’m off on a strange tangent. But most of my dreams are about traveling, always with my family and we are always happy and having fun. People say that you should do what you loved to do as a child to be happy in life. What I loved to do as a child was go off exploring. I have done some exploring. I traveled a bit before I met Billy with Jimmy, we went to Kentucky, Tennessee, Nebraska and more. I went to California and lived there for 9 years before Billy & I and the kids moved back here. I like to go on adventures, I guess. If my body cooperates! There’s always the stress of the journey, but I like exploring.

We return to Indy for doctor’s appointments, to get red blood or platelets, or both, 2 to 3 times a week. Next week Billy is to start round 2 of the IV chemo since his acute myeloid leukemia returned. It has taken a very long time for him to build up enough strength to be able to do this 2nd round. I haven’t been able to write about his hospital stays for pneumonia in January and February, and the day we were told his AML is back. It’s too difficult. We are praying for healing, and success in treatment. For wisdom for the doctors. For strength for us to get through all that is coming, and all that we’re going through now. Most of all, I pray that God heals my sweet Billy. Because I don’t want to lose him.

Post Stem Cell Transplant

Life has its ups and downs post stem cell transplant. Ups and downs seems like a terrible way to describe it. More like good days and scary days. Billy is pretty far out from his transplant, and is doing well for the most part. It doesn’t appear his leukemia has returned. That’s a big praise – the BIGGEST. He has had some set backs, though. He’s been hospitalized twice with “pneumonia”, once in May and once in October, just last month. The doctors ran some tests, chest x-rays and CT scans and suspected he could, could to be emphasized, could have Graft vs. Host of the lungs. Well, that was a scary time. The doctors treated him as if he did have it, with high doses of prednisone and an anti-viral to be safe. They have scaled back his prednisone to 40 mg a day, which is more bearable. His doctor said he doesn’t really believe that he has GVHD. But now, starting yesterday or so, he’s having lung issues again. Coughing, runny nose, hard to breathe. God, please heal this man.

You know, life goes on and you start to take it all for granted once again. When Billy was in the hospital last month, he was really sick. He has some kind of something in his left lung, in both his lungs really, but in the left the most. We both humbled up and started looking hard at all we had very quickly. We appreciated every word, every moment together. Its how life should always be, but its not how it goes in reality.

The grandkids all just had birthdays, and little Jesse made his appearance in September. Sophia is now 11, Ransom is 9, Nora is 8, Judah is 7 and Evangeline is 5. I’m lucky their birthdays are so easy to keep track of. Jason and Janice’s kids are all 2 yrs. apart – except now for Jesse, who is 5 years younger than Evangeline. I love them all so much words cannot describe it. I hate that they’re growing up so fast. Every day is like a treasure, and I’m trying to hold onto every precious moment in my mind. I take a furious amount of pictures of everyone! Its how I keep my memories, I guess. Everyone is doing well. No one has any serious health problems. On Thursday, Nov. 4, one of Jason & Janice’s foster kids came to live with them again – Rebekah. Rebekah is 17 yrs. old now. Hard to believe. Jason & Billy started building a bedroom in his 2 car garage. They painted it day before yesterday. Wow, they got it done so fast. Its a cute little room, with a big closet. They have welcomed her in with open arms. I hope and pray she will appreciate her home, and try to do well these last couple of years in school and get ready for college. Joseph and Trisha are doing well, Joseph is working weekdays again at the TV station. Trisha is teaching at Nora’s school, and Nora is in gymnastics and loves it. Joanna and Nick went away last weekend to celebrate their 2nd anniversary early. They went to a magic show and stayed at a fancy hotel. It looks like they had fun.

I’m hoping and praying that Billy can kick this thing on his own, without ending up in the hospital again. I’ve told him that his lungs are his kryptonite, and I believe I’m right. Praying that it won’t stay that way. Praying for healing, always, for my Billy.

The Memories I Want to Keep

Sometimes I wonder, how much of my beautiful life will I remember when I come to the end?

Will I remember how my husband looked when he was young? How powerful he was, how handsome, with his carpet-layers muscles and long blond hair. Will I remember my children as young ones? Will I see Jason’s tow head as he played? Will I see Joanna’s sweet gray-blue eyes under blond bangs? Will I see Joseph’s sweet face and hear his little voice? Will I remember the lake, it’s cool waters reflecting the sky? Watching my kids and grandkids learning to ski, learning to swim, and playing baseball, softball, basketball, running cross country and wrestling are great joys in my life. Will I remember their weddings, the births of my grandchildren? Will I think of how I held all their hands, their soft, sweet, sometimes sticky hands, and felt like I’d protect them all to my death?

Will I remember my funky cinder block house with the gorgeous yard and beautiful lake? Will I feel the breeze on my face, the coolness of the shade, see the sparkle of the water? Will I feel the rumble of the boat motor and the chop of the waves as I drive our boat, pulling my husband on slalom skis? Will I see the clouds float above me as I soar across the water, the sun peeking out from behind the trees?

I hope I remember the sunsets on the lake, the layers of purple, orange and pink in the clouds refected on the waters. The quiet and the sound of water lapping against the side of the boat. The dogs we have had standing at the front of the pontoon boat, sniffing the air, coming back for licks and scratches behind the ears. And Billy and I, with a cocktail, floating and relaxing and just being together after a long day, talking and laughing. And clouds like piles of whipped cream overhead and peace like a palpable thing, like a welcome friend sitting with us.

These are the memories I hope I can keep. Please God. Let it be so.

August 2021

Tomorrow is August 31st, and I’m always sad to see that day come around. It means summer is almost over and Fall is so close, and with Fall, Winter.

Billy has got to realize two big dreams this summer. He got to swim with the grandkids for the first time in 3 years. Before he had cancer, he cut his foot and it got infected. He spent most of that summer in the hospital and trying to heal. His 2nd dream was to be strong enough to water ski. He is and he has. He can make 2 laps around the lake. I can see muscle definition again in his arms. His wrists are no longer thin, bony things, they have some meat on them!

At the end of June, I believe, we got a sweet little blue heeler named Emmy. She weighed 24 pounds. Her birthday was around Christmas. Since we got her, she’s grown in size and confidence. She’s up to 33 pounds. She goes outside by herself, plays with Brad’s dogs from next door, Ellie & Colby. The best is that she swims. She loves the water. Saturday Jason & family were here and the kids were water skiing. Sophia, Ransom & Judah can all ski behind the boat. Evangeline & I were swimming in our cove and Billy had brought the boat close by so Sophia could ski. As they were getting her ready, Emmy ( in her floatation vest) took off swimming out to the boat and I couldn’t catch her in time. She’s pretty awesome.

I gotta go for now. 😘

Things are going well

Billy’s blood counts aren’t all normal, but his white counts are great and his hemoglobin was almost normal at his last appointment. Platelets are still low. His doctor said, “I’m not going to tell you I’ll be happy if you see your 65th birthday anymore. I think I’m going to expect more longevity than that from you. I think we’re in this thing for the long haul now.” We don’t understand any of this. I don’t think his blood type has changed over to his donor’s type. He still has GVHD on his head, face, chest and back. And one of his eyes seems to have GVHD. But he’s getting better. And stronger. He said to me one day about a month ago, “I can’t just sit here on this couch,” like he used to say when he was well. I knew then he was feeling better. But just last night he said something scary to me. He said he felt he was unwell inside, like in his organs. I didn’t ask him what he meant. I didn’t want to hear more and I don’t think he could have articulated what he’s feeling any better.

I promised God I wouldn’t cut my hair until Billy was healed. So my hair hasn’t been cut since fall of 2019. It’s very long, and starting to annoy me. It hasn’t been this long since I was young. It still isn’t gray. Women are letting their hair go gray now, because everything was closed so long because of Covid. I’ve been letting my hair go gray for 63 years.

Speaking of years, Billy had his 60th birthday and the whole family came for the celebration, except Nick, and Billy’s sister, Lisa, was here from CA. I made it a pirate theme. It was the happiest day of our year so far. Thank you, Lord, for my Billy. Hard to believe that a year ago I nearly lost him. What a time it’s been. I’m so grateful!!

Our beautiful grandkids are getting bigger and Janice is pregnant again, due in August. I’m so excited! Jason and Janice bought her grandparents farm in Clay City, put their Eel River house up for sale and had a cash offer the next day! Yesterday, Billy helped Jason and fam plant over 300 baby Christmas trees. I’m super excited about their farm – excited to see what all they do with the 17 acres and barn. They have the Chalet that Huck built and a big pond. The house is big, the kitchen enormous! I’m excited to see what God has in store for them, for all of us. Jason’s preaching is inspired. The kids are so good. Their family is amazing.

Signing off.

A Real Man

I’ve been thinking a lot the last couple of days about men. Specifically, what I think of when I think of “a real man.” My youngest son, Joe, is now 29; my oldest, Jason, is 35; and Joe’s Birthday seemed to trigger these thoughts.

My husband, Billy, is a real man. My sons are real men. My son-in-law is a real man. I’m proud of who they are. Astonished, really, that they are so amazing. My dad was a real man. Maybe that’s where I should start.

My dad taught physics at I.S.U., a local university. He got up early every day to work around our property, 5 acres of treed lawn and 186 acres of farmland he shared with my grandpa and my uncle, dad’s brother, Ed. Dad was very strong. He didn’t work out, he just worked, and he had big arms and strong muscles from building things, fixing things, moving things. A real man is strong and he’s not afraid of hard work or getting his hands dirty. He’s not squeamish. A cut doesn’t rate a notice or a remark. He’s hardy, doesn’t complain about the heat or cold, except in passing. My dad loved temperatures in the 50’s. He called it “working weather.” My mom was delicate, small, sensitive; my dad was her opposite. Unfortunately, dad was gone a lot. He had a hard time being around 4 daughters and a wife all the time, all the hormones, loudness, fighting, laughing and drama. His absence created in me a facination with men, a feeling that they were different, better, deeply mysterious.

My husband, Billy, laid floor coverings for 40 years until his cancer ended his career. He was strong, he was hardy, he didn’t complain. He did what needed to be done, like fixing cars after a back breaking day at work. He played with the kids and they loved him. He was the daredevil, the one who rode motorcycles and dirt bikes, who water skied and showed the kids how to do all those things. Billy was the one who had to stay steady when my hormones turned me into an angry or weeping mess.

So, my men are strong, hardy, tough, steady and understanding. They are Real Men and I’m so proud of them all!

Day Plus 44 – Going Home

Billy’s GVHD is responding to his medications very well, and his rash is almost gone. And, praise God, it hasn’t got worse or spread to his organs. So, the doctor said he could go home today! I guess they are confident that he’s doing well enough to be 1 1/2 hrs from the hospital.

I hope being home will improve his attitude, and help him be grateful again. I can’t imagine how I would feel if I were in his shoes. I might be a winey, complaining patient; I might be so weary of taking so many pills every day, and angry at how bad it all makes me feel.

I need God to help me be a good caregiver. And I hope the Lord can help Billy find some gratitude in the little things and the big things that He does for us. All He has given us

Graft vs Host Disease and the 4th of July

Billy’s favorite holiday is the 4th of July.

We always have a big 4th of July get together. It’s also the day we celebrate the birthdays of our 2 youngest grandchildren, Evangeline and Judah. Billy and I were looking forward to the party, especially with the added reason to celebrate-he had the bone marrow transplant, and was out of the hospital! Everyone chips in and we have $900-1200 worth of awesome fireworks that the guys launch into the sky. It was going to be epic.

But, things never go as planned, do they?

We saw the doctor on Tuesday, June 30th. Billy needed red blood, but was otherwise doing ok. We told the doctor we found a shady park, Westside Park in Greenwood, where we could walk every day, and Billy was walking about a mile. It had a creek, which was nice. The nurse warned us to be sure Billy had on sunscreen, because the sun can trigger Graft vs Host Disease. We weren’t too concerned, saying the walking paths were pretty shady. Well, wouldn’t you know that very afternoon, the apples of Billy’s cheeks seemed red. He wasn’t running a fever, and we thought maybe it was from the sun. Then his cheeks seemed a little puffy. I started reading about GVHD and worrying.

His red cheeks spread over the next couple of days. His neck was a little red. We saw the doctor on Friday, told him Billy’s face and head and neck were red and itchy. The doctor said it could be a little GVHD. Billy wasn’t supposed to take one of his anti-rejection medicines until after his appointment on Friday, July 3rd, but we forgot. The doctor said Billy’s one remaining kidney “wasn’t happy”.  He told Billy not to take that medicine that evening, or the next morning, and to come to the BMT ward at Franciscan Health on Saturday morning, July 4th. He wanted to test Billy’s levels and make sure his kidney was ok. We had CHECKED OUT of our hotel, we were so sure we could go home for the weekend and see family and celebrate the 4th. Billy’s doctor told him he must stay close to the hospital, and that he can’t be around a lot of people anyway. He said no party. Not only that, but Billy’s rash spread while we sat for 3 hours in the BMT, waiting for blood test results. He had a red rash on his arms, his chest and back now. The doctor said to take the medication he had skipped, get cortisone cream and try to hang in until Monday, when the pharmacy could make him some Army cream, a steroid cream of some kind.

Since we no longer had a hotel to return to, and desperately needed clean clothes to wear, we drove the 1 1/2 hrs home, did laundry and got to see Joseph and family and Jason and family, since the party was still going forward on the 4th and there was tons of work to do, they were all at our house. We booked at the same hotel, and drove back, ready to stay.

The 4th of July party went fine, and Joseph video called us so we could watch the grandkids open their presents. Nora called me during that day because she and Sophia had got into a fight and Nora said Sophie was mad at her and wouldn’t talk to her. I had her put both girls on the speaker phone, and told them how much I love them and how proud I am of the wonderful girls they are. I reminded them ” family first” and that cousins are friends for life. I had them hug each other and had each one say Sorry to the other. (because I didn’t care who did what, or to whom) Then I asked them to high five each other while saying, “I got your back!” They complied with everything, and I was so happy and proud I got to be mediator. 💕

So today Billy’s rash did get a little worse, but the cortisone cream did help the itching, so that was some relief. Billy’s sister, Lisa, flew in last night. She’ll be his caregiver this next week so I can go back to work. I know he wants me there, and there’s no place I’d rather be, but after 2 more weeks of Gretchen letting me work remotely, I had to go back to work. I’m super spacey, and prone to making mistakes because I’m so distracted. God help me at my job this week, please. And please, please heal my Billy.