A Happy and Thankful Life

Two years post transplant

Two years ago, I spent the day in J’s room waiting with him. Waiting for him to receive another chance at life.

When he relapsed the first time, we knew that the only option left would be a bone marrow transplant, which really is a stem cell transplant. Two years prior, two of his three siblings were tested to see if they were a match. Each sibling has a one out of four chance to be a match. His brother was a 9/10 match. With the relapse, they rechecked the registry to see if there were any available matches. There weren’t any.  His brother was his best chance. Two years ago, I watched his brother’s stem cells transfuse into J. For something so monumental, it was as simple as a transfusion. His brother gave J another chance. Without his stem-cells, J wouldn’t have made it as long as he did. The transplant gave him another chance.

There are major risks for BMT/SCT. But for J’s case, and many other AML patients, not having a transplant means a guaranteed outcome. With the transplant, there is a chance. That is what we wanted. We wanted another chance at life. He wanted to live.

Because his brother donated his stem cells, J was given 14 more months to enjoy life. Those months were rough at times because of the side affects, but he was alive. His relapse after the transplant wasn’t supposed to happen. unfortunately when dealing with cancer, nothing is guaranteed.

Tonight, we should have been celebrating his new 2-year birthday. Even though I still miss J desperately, I’m reminding myself of the reasons to be thankful. We were able to encourage others to join the Be the Match Registry. His siblings willingly got tested to see if they could donate. His brother put his life on hold for two weeks to come and donate his stem cells. We did everything we could with the options available. J was given another chance. He was given 14 more months at life. For that, I’m thankful.


One year of Sass

Last February 15th, J and I brought home his kitten. We had searched numerous Petsmart stores during their pet adoption weekend and he finally found the one. She was the one that was really active and jumping in and out of her cage. We asked the lady in charge of the rescue group and when she talked about how feisty and rotten she is, J couldn’t resist. He wanted a kitten with attitude and we got one. While we were trying to meet her, she managed to take the cover off a padlock and climb along the wall of cage doors.

We put our name in for her and were approved. The lady told us that she wouldn’t cash our check for two weeks in case we changed our minds. That was the impression she had on others. There was no turning back once J saw her. It was great timing. We were giving the okay by his doctor and she had more than enough attitude to go around.

I wish that J had been able to enjoy his kitten more than two and a half months. But even when he was at the hospital, she brought a smile to his face. I had a big printed picture of her posted across from his bed. I would film her playing with toys and then play the video back the next day. She made him happy.

Now, she makes me happy. As I’ve said before, she gives me a good reason to come home on time. She keeps me company and makes me laugh. She is sweet, yet equally rotten. Having a pet in the house is a good thing for me. It’s been a year of having her in my life and I’m looking forward to more.

Just another day

It’s just another day. I kept telling myself that. Tried to not remind myself that I’m missing my favorite valentine. Last year, he surprised me at work with flowers. He knew how much I loved flowers but we couldn’t have them in the apartment because of his immune system. After his school observation, he rushed around downtown and picked up flowers and chocolate covered strawberries. This was the same gift from our first Valentines Day together. He had to drop off the flowers to me and it was such a sweet surprise. His smile was so big. In our world where he couldn’t always remember everything, he remembered when it counted.

This year, I focused on my work so I could block out the joy around me. That allowed me to block out my thoughts. I’m glad others can spend their evening with their loved one. I just miss mine.

I made it through work but as I headed home, it became even more apparent that I didn’t want to spend the night at home alone. I’m thankful that the group session was tonight. It may sound depressing but I wanted to spend the evening with people who understood my pain. People that understand that life isn’t the same without our partner. People that understand how we can be happy for others but still feel that distinct ache of loss.

For me, today was not a day for love. Today was just another day. Just one more day that I have to get through without J. That is my reality.

What not to say

A few days ago a video was posted about the things people say to widows. Watching it hurts but it is true and helpful. As well intentioned as some of the comments are, they do hurt. Unfortunately, I’ve received my own share of comments. Both said directly to me but also behind my back. In the first days and weeks, for those that are grieving all they want to hear is that you are there for them. And for you to listen. If you don’t know what to say, that’s okay. Chances are that they don’t know either. It’s okay to say, “I’m sorry. I don’t know what to say but I’m here for you.”

Shit People Say to Widows

That being said, know your friend. I am okay to have a real conversation with a friend. Or even to talk with someone who wants to better understand what is going on. I may be a very honest person and often okay to talk through my experiences but not everyone is. And that is okay; everyone is different. The hurtful statements I heard were not in a conversation but were made in passing.  There is a big difference talking about the challenges after a spouse’s death and just randomly asking if he had life insurance. Also, most people grieving a loved one don’t think they are strong; they are just doing what they can to get through the day. They may be strong…but they don’t believe or feel it. So, as well intentioned as the statement is, it makes them feel bad because they don’t think they’ll ever be strong enough. Or at least that is how I feel.

I guess what I’m trying to say, in a very awkward way, is be thoughtful and aware of the things we say to those that are grieving loved ones. That is all. Just don’t ever ask if they miss the person.

quirky accepted here

I’ve been absent this past week as there are a lot of words swimming in my head. I’m working on finding my voice. It is one thing to write my thoughts and it is another to actually say them. While everything I write is always something I would say to another, I often choose to let it go unsaid to those that aren’t my closest friends. I’m working on that.

There is a lot to say today but I will focus on just one thing. I had an email exchange with a fellow outreach colleague at another museum. I discovered at the conference in October that there is a special brand of museum employees that work in Outreach. For some reason, I thought we were just the quirky ones. Nope, we are not alone. Just like where I work, they are outgoing, loud, enthusiastic, passionate, and contain massive amounts of random knowledge. It’s great. A bit overwhelming at times, but always great.

This email exchange had us discussing the upcoming conference with his ending line commenting on his feelings towards our distinct mascot. My response was to send him a picture of my tallest team member wearing the costume. We discovered that there is a very good reason why there are height restrictions. When a six-foot plus man wears a mascot costume, the result is more than a little overwhelming. The mascot is then towering a few feet over you. And that is what I sent to him. I personally think our mascot is fetching. It’s cute!

But this exchange reminded me to embrace the pure humor that exists in our job. That quirky is accepted and sometimes expected. It works. While there are times that we need to be serious and get to business, there are times to laugh. There can be a balance. And sometimes you need to use your mascot to humor your fellow colleagues.

at the end

Today was a sad day. A day that we knew was coming but that doesn’t make it any easier. Anyone that tells you differently is lying. Knowing that a loved one is going to die doesn’t make it any easier than when you don’t know it’s coming. I feel as though I can say that as I’ve been through both.

A kind woman at work passed away today and my heart aches for her boyfriend, family and friends that love her dearly. She was a strong woman who impressed me with her grace and kind words when I saw her. One of her closest friends and I have been talking and she came in this morning to update me.  She was on her way to be with her.

I’m not one for advice…especially when it comes to death and grief, but I was reminded today of what a counselor said to me in the last days of J’s life. I was so stressed out and trying to do and be everything for everyone. But the thing I worried most about was him being alone when he passed away. We had gone through everything together and I didn’t want him to be alone. It terrified me. The counselor pulled me aside and when I told her my fear, she said something that calmed me.

She said that while they don’t have scientific proof, many of them feel as though their patients choose when to die. Some patients choose to wait until everyone leaves the room. This could be a way to protect friends and loved ones from those final moments. Others wait until a particular person has arrived. She told me that if he wanted to be alone, he would be. But if it was that important to me that I was there, that I needed to tell him that now. Knowing him, he would have passed while alone to spare us that. J wasn’t very coherent towards the end but I did tell him how important it was to me that he wasn’t alone. And at the end, he wasn’t.

As much as I appreciate and love science, it doesn’t have all the answers. Some things can’t be proven. This is one situation where I will trust the counselors who experience this every day. Also, I can’t see how it can be bad if it brings comfort to the families instead of them battling with the “what its?”. This conversation with the counselor brought me comfort and allowed me to breathe and not stress as much over the inevitable. I repeated these words to my friend today with the hope that it would also bring her some comfort.

I’m thankful for these words that brought me comfort and that I hope will bring comfort to others. I’m thankful for a system, such as hospice,  that is there to let people spend their final days, months or years in comfort and on their own terms. That this system provides support not just for the one that passed but also those that are left behind. I’m thankful to have known this kind woman and that she was able to live her life on her own terms.