I will try to summarize almost 2 years in my first blog ever!
Part 1: Diagnosis and 1st round of chemotherapy
Kevin was diagnosed with Chronic Myeloid Leukemia - blast crisis on May 28th, 2013.
A few days prior to his diagnosis he had complaints of severe headaches and abdominal pain. We ended up in the Emergency Department. The first night, a CT of his head was done which was normal; so they gave him a bunch of fluids and pain medications and we went home.
The next day we attempted to go see his primary care doctor. She took one look at Kevin and sent him to the ED because of the amount of abdominal pain he was having. In the ED, blood work was drawn. Shortly after that, an ED doctor came in to tell us the news that has changed our lives.
Kevin has leukemia.
My strong, beautiful, loving, big hearted husband has leukemia. Even though I work in oncology, and specifically focus in leukemia - I missed this, I missed every symptom he was having. When he was diagnosed it was an oncological emergency. He had multiple IVs placed everywhere (arm, neck, hands), was transferred to the ICU and began treatment immediately. Soul-crushing fear, devastation, guilt, and panic began that day in ED and has continued to be with me on a daily basis.
After about 3 days in the ICU we were moved to the oncology floor. The waiting game began. Kevin was good about being patient and waiting. I was not. So with the amount of caffeine I took in and "waiting" --- it was interesting.
The reason we had to stay inpatient is INFECTION! If people were sick - they could not come and visit. Our children were very young when he was diagnosed (Adele = 2 years old and Crosby = 7 months old) so the brief amount of time they could visit was precious to us.
An journal entry from May 30, 2013:
Reality has begun to set in.
1. Got to his room today before he was wheeled down from ICU. It hit me hard. This is where we are stuck for the foreseeable future. I want him home. I don't want this.
2. Adele said the words "Daddy has cancer." This killed me. She should not know that word.
Again, I want him home. I don't want this.
Please pray a special prayer for Adele and Crosby tonight.
On the positive side - he is my rock. I told him I was scared - he said he wasn't and that things are already heading in the right direction. He is right, they are.
A few days later:
Today was a good day. A friend stopped by and brought us lunch (thks Tonya!). It was nice not to eat hospital food for a meal. Later in the afternoon Adele came up to visit and we popped some popcorn and watched the "Bee Movie." She seemed to enjoy herself and playing with Daddy's bed. My awesome coworkers sent a great gift basket that included some stuff for her - which she loved (thanks everyone!). My parents brought Crosby up for a little bit as well. It's tough with him because all he wants to do is get on the floor and crawl around. And since hospital floors are disgusting - he will not be doing that! But it was fabulous holding and cuddling him.
When it was time for them to leave Adele had a hard time leaving - which was heartbreaking. I hate seeing her cry. Afterwards, Kevin and I walked down to the cafeteria and I got some dinner. We had a "date night" eating outside on the patio. It was nice to be outside together and breathe the fresh air. He has to wear a mask now whenever he leaves the oncology unit. I hate that but he doesn't seem to mind.
About two weeks into chemo he began his oral chemotherapy (Dasatinib).
A entry from June 1, 2013:
Today he also began he oral chemo called Dasatinib. He will be on this for the next 20 days. The goal for his treatment is to complete this 4-6 week period inpatient. His day 14 bone marrow evaluation WILL NOT show leukemia and he WILL be in remission after this 4-6 week period.
Following this he will need a bone marrow transplant. His brother Brian will be worked-up to see if he is a match. He has a 1 in 4 chance of matching Kevin. If he is not, they will look on the national donor website and find him one.
Today we cuddled in his bed and he took a nap - I loved that. He was so peaceful. When I watched him sleep I just couldn't help but cry. He looked so well and healthy. I just can't wrap my mind around that this is actually happening. I am trying to make sense of this all. And I can't. I just can't. I am so pissed off and sad and desperate and scared shitless. I find myself fighting back tears multiple times a day.
But Kevin - he isn't fazed at all. He is my rock. It's so backwards. I should be his rock. Tonight is my first night away from him. This is hard. Very hard. His side of the bed is as it always is. I can't wait until he is home. I love being with Adele and Crosby but I HATE being away from him. Taught Adele a new prayer tonight "Dear Jesus, please heal my daddy and make him better. I love him. Amen."
How can God not listen to a request like that from a girl like Adele?!? This will be a long night. I can't wait for the morning so I can get the kids ready and go to him. Praying that I dream about my guy tonight.
Our family time was limited to short visits during his first hospital stay. Our dinners in the cafeteria were odd. He had to wear a mask when he left his unit; he took his mask off to eat and for a second it just seemed as we where a normal, healthy family eating lunch together in a weird-ass restaurant where IV poles and scrubs are the normal.
It took me awhile to actually write how his diagnosis really, really affected me. Here is what I wrote the same day as our dinner with the kids:
So this week has been hell on earth for me. I feel like I am losing my frickin mind. I don't know when this will all become my "normal" but it hasn't happened yet. I have been short with the people I love the most in the world; I apologize for that and apologize for the future times when I continue to do that. I stare at the calendar and think; alright 1 week ago we where doing this... (last week we where in the ED because of his headaches) and now we are here.
Never ever ever would I have imagined this was the cause of his headache and abd pain. It's so hard for me to talk about the fact that I didn't notice my own husband had leukemia let alone forgive myself. This is my job. Leukemia. Cancer. I hear stories like his all the time at work. And somehow this happened. Somehow it didn't even cross my mind. Devastation doesn't even begin to describe how I feel about this.
The days visiting daddy were hard on Adele. She didn't really understand what was happening. All she knew was the she missed him at home. She memorized what elevator we took to his floor and what room number his bed was in. Leaving him was always hard for her. She cried a lot and so did I. She was just to young to understand it. It was always awful saying goodbye to daddy. She sobbed, I sobbed, and people in the lobby and hallways just stared... UGH!
When I went back to work I was a bit of a zombie (looked like one and acted like one). I actually drew huge hearts on his hospital window so when I was walking back and forth between meetings I could see his room!
Our days at home without him were hard. Things were missing from our home that I took to the hospital. The walls didn't have photos on them, pillows and blankets were missing. Our home was not complete - just as I was without Kevin by me.
I had a few meltdowns during this time. One was when I was trying to install car seats. I freaked out because I couldn't get them in - this was Kevin's job; he always did this stuff and now I had to. It just reminded me how awful this was without him and how I couldn't do "life" without him by my side.
The night prior to a big procedure looking to see how he responded to chemo I wrote:
I really don't know what to say tonight. Nervousness doesn't describe what I feel about tomorrow. When I think about it and the weeks to come I can barely breathe. He continues to be my rock. And we continue to laugh and smile and love. And the fact remains that I am hopeful that his marrow will be what we want. My friend told me tonight not to worry about the statistics as he is his own statistic. It's good advice. Thanks, Matt.
Thankfully he had no evidence of his leukemia at that point!
He quickly developed a horrible side effect from chemo called mucositis: horrible painful mouth sores. After this he developed fevers and an infection. He required IV pain medications and antibiotics. He required multiple CT scans looking for a source of infection.
During one of his CTs that found a big spleen. I wrote:
The abnormal finding on the CT scan that has made me numb is that his spleen is big. This is called splenomegaly. When he was diagnosed his spleen was really big because it was full of leukemia cells. Fevers can be caused by leukemia. The aches and pains he is currently having can be caused by his leukemia. My heart that is breaking is caused by his leukemia.
He will be having another bone marrow aspirate and biopsy tomorrow morning. Hopefully we will have results tomorrow or the day after.
Thankfully - his bone marrow came back as "the best case scenario."
A few days after this - he was finally discharged home.
We spent about a month and a half in the hospital.
More to come...the journey certainly wasn't over.