Exactly 20 months ago today, my best friend, my husband, Don, died.
20 Months. 1 year, 8 months. 608 days.
Yep, I count the days.
A few months after my last blog post (from 2012), Don was diagnosed with cancer. Lymphoma. Specifically it was called "Diffuse Large B Cell Lymphoma." Also known as DLBCL. Stage IV.
Don was the epitome of health and to discover the nasty stomach pains he was experiencing was -- cancer -- was devastating. That's an understatement. There are no words to begin to express what we felt that day. That day was Thursday, April 25. We came home from the doctor's office that afternoon and together we just sat there in silence. The doctor told us we had to decide on an oncologist. We knew he had lymphoma but we didn't know what kind yet. We didn't know where to begin. We didn't know what to do. We didn't know who to call. It just didn't seem real.
Don wanted to tell our daughter first. She was in college. He didn't want to tell anybody else until he spoke with her, and later that evening he was able to talk to her. Listening to his conversation suddenly made everything REAL. Surreal actually. After he hung up the phone with her is when the reality of our situation hit me.
I spent all day Friday trying to find an oncologist with no success. On Sunday night at 10 pm, I drove Don to the ER in our town because he was in so much pain that prescription painkillers didn't help. The first of so many ER visits that I eventually lost track of how many. The next morning, he was taken by ambulance to a larger hospital in Sioux Falls, SD about two hours away. The first of numerous ambulance trips. He spent a week in the hospital on that trip. The first of many hospital stays. It was during this time they got an exact diagnosis of his cancer. He had so many tests, it was surreal. He began chemotherapy. The first of many chemotherapy treatments.
We were told that DLBCL was a very common lymphoma. A very curable lymphoma. We read all we could about it and we had high hopes that he could beat it. We prayed. A lot.
Three weeks later, we were told that he had an additional aspect to the lymphoma. It was called c-myc. This diagnosis turned everything upside down. About 5% of DLBCL have this translocation. There is not much written about it that we could find. At least in layman's terms. Every article we could find ended with "poor prognosis." Our oncologist told us it fell into "the grey zone" for lymphoma.
The next 8 months were hell. In the beginning, someone told us "welcome to the roller coaster" and that's exactly what it was. So many ups and downs, twists and turns.
Because of the c-myc translocation, the oncologist in Sioux Falls sent us to an oncologist specialist at the Mayo Clinic in Rochester, MN. It was decided that Don would continue his chemotherapy in Sioux Falls rather than transfer to Mayo.
At the end of the chemotherapy treatment, in September, we were told the cancer was pretty much gone. They didn't use the words "remission" -- they said "no evidence of disease" remained. We were so excited! Don was starting to feel good again now that the chemo wasn't being given every 21 days.
Don went for a checkup on a Friday in October. CT scan, bloods tests were great. Doctor said everything looked absolutely wonderful.
Just 3 days later, we were back. The exact same tests showed the cancer had returned -- and was stronger than ever. In just THREE DAYS.
The Sioux Falls oncologist called the Mayo Clinic oncologist. We were told to drive straight to the Mayo Clinic. About a 4-5 hour drive. Get there ASAP. They wanted to start a new chemo that very night.
The next 3 months were spent trying different chemos. Salvage chemo is what they called it. First one did not work. Second one did not work. Third one did not work. Many blood transfusions and especially platelet transfusions happened during this time. We spent 10 hours on Christmas Eve in the local hospital with transfusions. On January 2nd, they called off the stem cell transplant he was supposed to have later that month. (Called an autologous stem cell transplant. Using his own stem cells.) The procedure we had been told is necessary to save his life.
They began palliative chemo but we were not told he was terminal. We were told they were still hoping to knock back the cancer enough to get him into a clinical trial which would still lead to the stem cell transplant.
On January 28, I had to call an ambulance for Don. We had just returned home the day before from a 10-day stay at the Mayo Clinic.
He died that night.
20 months ago today.
I was 52 years old. I'm not supposed to be a widow at 52. We were supposed to grow old together and die together in our sleep. Holding hands. When we are old.
From that day on, everything became a blur. I was actually disappointed every morning when I woke up. I didn't want to wake up. I didn't want to go through a day. Yet it happened every single day. I existed through the days. 608 of them so far.
We never discussed Don dying. We knew it could happen. But we didn't talk about it. If the doctors had said something like get your affairs in order, you have x amount of time left, we probably would have talked about it then. The doctors never told us that. Other people we knew who had cancer were told this. Our doctors gave us hope, even when we were told how bad the cancer was getting.
I have prayed more than I ever prayed these 608 days. I have asked God for signs. I have asked God to send Don back. I have asked God to let me join him. I have asked God for a lot. I have prayed someone will call or stop by. I have sat in my house and watched my friends and neighbors go on with their lives, hoping one of them will suddenly come over and drag me out of the house. Or bring me food. Or show up with a bottle of wine and just sit and talk. Or show up without the wine. Or just call. I find it hard to leave my house. I want to do so many things and I think I'm going to do them. But I don't. After 20 months, I rarely hear from anybody. After 20 months, sometimes I think I'm ready to begin participating in things again but it's been so long... it's awkward to me now.
When people ask how I am, I always say I'm doing well. I'm good. I'm fine. Things are great. Nobody wants to hear me say no, I'm not okay; I'm scared to pieces and all alone and I don't want to do anything. I put on a happy face and smile and be cheerful and get through the day.
The world feels like it's spinning a million miles an hour around me. And I am standing still watching it.
I pray that nothing major goes wrong in the house. A few minor things have happened and they've send me into a spiraling panic. I've learned how to do a lot of things -- small things, but they're big to me. Don always took care of everything. If a toilet wasn't working, I told him and then he fixed it. That was the way things worked. Don could do anything. He knew everything. He was a plumber, an electrician, a carpenter, an engineer, a car mechanic, a gardener and every other thing you could think of. He rarely called a professional to do something because he could do it all himself. He only called a professional if he didn't want to do it.
I could ask for help. And I have a few times. But calling someone for help, even though I know whomever I call would be happy to help, is hard. Only in sheer desperation have I been able to ask for help. And I can't do it for every little thing, so I try to learn how to do things myself. A few months after Don died, a friend came over and changed the a/c or furnace filter. I'm really not sure exactly what to call that. The filter. To change it involves moving a utility sink. That is dealing with plumbing. Scares me as much as something electrical. I watched my friend do it, he showed me how to do it -- and I couldn't do it after that. I have had sleepless nights worrying about that stupid filter. This past weekend, over a year later, I said a few prayers and decided to do it. And I did. Changing that filter was a HUGE accomplishment for me! Huge.
Has God answered my prayers? Some, yes, definitely. Not all of them, thankfully. :)
Has God sent me signs? I can say a definite YES! Beginning just a few days after Don died, I started seeing signs. Signs that God was reassuring me. Signs that God is with me. When Don was sick, we brought up signs... A sign that if one of us were to die, the other would see this and know immediately that it was the other saying hello. We wanted an animal of some sort. An animal that is in our area but rarely seen. If we decided on something like a bird or a squirrel -- well, we see those all the time. It had to be something more rare than that.
We decided upon a fox. We know there are foxes where we live but we have rarely seen one.
After Don died, I thought about the fox. I didn't know if foxes hibernate. It was winter. I figured the odds of seeing a fox were nil at that time and wondered if and when I would ever see a fox...
Suddenly, I started seeing foxes everywhere. Not a living fox but fox things. A fox figurine. A fox shape in the clouds. The strongest one came two weeks later. The pastor at my church mailed me some pamphlets on grief and he included a hand written note. On stationary with a picture of a FOX. The moment I saw that note and the picture of a fox, I KNEW that was my sign!
There have been so many other signs, too. One of them is hearts. Don used to write me notes and usually drew a heart on them. Or he'd sign a card with a drawn heart next to his name. I have seen hearts over and over. A drop of water in the sink shaped like a heart, a thread that fell on the floor and made the shape of a heart. The dog was licking the cushion on the couch and I looked down and saw she had licked a heart shape. One night the moon was shining through the windows and hitting something in its path -- to make a large heart-shaped light on the wall. A few weeks ago, I dropped a box of cereal and a bunch of it spilled onto the floor. I swept it up into a circle and went to get the vacuum. The dog decided to take a few bites while I was gone and I returned to find that my circle was now in the perfect shape of a heart.
One of Don's favorite snacks was popcorn. He loved popcorn. We had a popcorn machine and he would make it often. A few weeks ago I woke up in the middle of the night (I usually wake up every half hour to an hour) and thought I smelled smoke. Jumped out of bed wondering where the fire extinguisher was. A few seconds later I realized I was smelling popcorn. It wasn't faint, it was a strong smell of popcorn! And it lingered for about 5 minutes. Of course that prompted me to google "I am smelling popcorn" and after reading about it on the internet, I apparently need to see a neurologist immediately. :)
Popcorn. If there were any scent to immediately associate with Don, it is popcorn.
I also know where all the fire extinguishers are now.
My latest sign came last night. I was getting ready for bed and noticed an ant on the nightstand. Now I don't like ants. Or bugs of any kind. I've had to kill spiders all by myself since Don died instead of freaking out and getting him to kill them. But an ant? On my nightstand? How on earth did an ant get in? And wherever it came in, it had made its way all the way to the bedroom and up the nightstand and was now just sitting there and looking at me. I grabbed a tissue and got ready to squash the ant, looking around to see if there were any more.
And then it hit me. An ant on the nightstand. When Don and I were dating in San Antonio, I lived across town from him in an apartment. One evening I called him in a panic because there were 100's if not 1000's of ANTS -- crawling around on my nightstand and the wall and the carpet. Like an infestation! It was horrible and I was literally panicking. He came over, all the way across town which was about a 20-30 minute drive depending on the traffic. He brought all the stuff he needed to eradicate the ants. Apparently they came in because of the soda I had knocked over a few days earlier and didn't clean up properly. The sugar in the drink attracted them.
It was also the 3rd "I'm panicking!" trip he'd made since we began dating. The first one was because of scorpions in my apartment and the second trip was because of a water problem I didn't want the maintenance people to know about because I broke my kitchen sink.
I suddenly remembered what Don told me that night. Nothing major or life-changing but he said something like "you have to learn to deal with these things. I won't always be around to do it for you." He didn't mean that in the forever sense. He worked a lot and traveled a lot for his job and wasn't always around.
Over the years, he would occasionally bring up the "ant incident" to tease me about it. And over the years he was always showing me how to do things.
Here I stood, 31 years later, with another ant on the nightstand. It was on the coaster I used for my drink. Just standing there. There were no other ants with him (I looked) he was a loner ant. I swear I could literally FEEL Don there with me! The first time I've had that feeling since he died.
I've been learning to deal with things the past 20 months. The past 608 days. I've done way more than I ever thought I could. Some things have taken me a long time to learn, such as the filter, but this morning I woke up and realized that I've been managing somewhat on my own. At least with things concerning the house. It hasn't burnt down or collapsed in deterioration yet.
Every morning I pray to God to get me through the day. And every night I thank Him -- for getting me through that day and for everything He does for me.
Note: I have been asked by a friend to collaborate, along with a few others, on a book she is writing. It is a book of real-life thoughts and experiences from women bloggers whose husbands have died. I've agreed to write at least 5 posts and today is my first. I have re-activated my old blog to do this. If you were formerly a subscriber, I have ended that service as of today.
