Tag Archives: Leukemia

For the small things: a little gratitude

This week is my Thanksgiving break from work. My oldest is already home, and my son comes home late Wednesday night. We will have a traditional Thanksgiving dinner here at home, and then we are going up to Paso Robles with the other side of the family for the weekend. I’m especially thankful this year that we are spending time with all of our family.

Last May, my brother-in-law was diagnosed with AML – a type of Leukemia. He had two rounds of chemotherapy, went into remission, and was able to have a bone marrow transplant. The first 100 days post transplant are the most critical. Today, if I am counting correctly, is day 97 post transplant. We should be cheering, thankful that he beat the odds, and trust me, we are.

Walt and I are very close with my brother-in-law and his sister, and every time we see them we are both so glad he’s still with us. The one thing I learned this year was just how valuable those two are to me. He may be legally just my brother-in-law, but in my heart – he is my big brother and she is the older sister I always wanted. I need them. Life would change forever, otherwise.

Normally, transplant patients have a bone marrow biopsy (imagine having a hole drilled into your hip?!?) on or near day 100 to confirm that there is no leukemia present. Thanksgiving is day 100 for our family. Thankful? Most definitely.

Today, he is having his post-transplant bone marrow biopsy. We are all hoping for the best. Unfortunately, his platelet count is still very low, and they like to see it return to at least near-normal by day 60. His levels are nowhere near normal. This is worrisome, because even if AML is not present, the fact that his platelets are not recovering is problematic. We’re thankful, but I think it’s fair to say we’re all a little worried. On the flip side, we are also excited to be able to go to one of our favorite vacation spots later in the week to be together. I’m hoping it’s all just a crazy blip on the horizon, and we can go back to trying to convince him to agree to move up to Paso Robles and start the Rivera Family Compound with us.

I know most of you are sticking with this story to find out what this has to do with Duran Duran, or with being a fan. I had a revelation recently as I saw two groups of people I know going at one another. Pure drama. Is the band really worth all of that? In my opinion, it’s not even about the band, it’s just fandom, and while at one point I would have felt like I had something to prove to show my “place” in the community, I see it differently now. It just doesn’t matter.

Don’t get me wrong. I love Duran Duran. I love their music. I also adore each of those guys as PEOPLE. I don’t need to fight about who loves them more, or who they’re going to sleep with next, because honestly – I couldn’t care less. That’s not what it’s all about for me, and it never has been. The rest of you can grapple with what constitutes the best type of fan. Some fans are new to the community and want pictures. They’re making up for lost time.  Some other fans trace back their fandom for decades, and everyone handles their fandom differently.

As for me,  the results of the biopsy that is happening right now as I type is all that matters right now. Fandom has become more about friendship than fawning, although rest assured I have done my fair share. Gratitude is an interesting thing. Sometimes, taking a minute to be grateful makes a difference. This weekend, I convinced my husband to forgo plans to clean up our backyard in favor of meeting his sister and brother-in-law to go to a winter art festival. My argument was that we have to take the time when we can. We had a great time that day, and both of us were glad we went. Chores can wait!

Today I’m thankful that my oldest is home and that my son finally answered one of my texts. I am trying to spend time in gratitude for what I have, rather than worrying about assurances I do not. It isn’t easy.  Duran Duran is the same way. I have no idea what that band really has planned for next year or beyond, but I am incredibly grateful for the career they’ve already shared. It is these thoughts that will get me through until Wednesday, when my family hears the results.



Find yourself in the moment

On Sunday, my husband and I went and visited my brother-in-law. He’s on an extended stay at the City of Hope, a world-renowned research hospital in Southern California. It is by far the best place for him. He finished a first round of very strong chemotherapy, hoping to kill off the cancer cells in his blood, and he’s in the hospital hoping that his numbers all come up so that he can go home, and then wait for a bone marrow donor match.  My family’s operating word right now is hope.

I was really nervous about going to the hospital. I hadn’t gone to see my brother yet, and finally on Sunday Walt suggested we go.  I must have come up with 50,000 reasons why I shouldn’t go.  In the end, the kids stayed home while Walt and I climbed into the car and made the trip. I tried to stay calm, but I could feel my nerves on edge. I hate admitting that. The White Coat Syndrome I’ve developed over the years has not lessened. It’s just unnerving to walk in to a hospital, particularly when you’re going to the hematology floor and you’ve got to slip on gloves and mask in order to visit a beloved family member. There’s no way to make that comfortable, and I’m just the visiting family member. I can’t imagine the one being in the bed.

I don’t remember what I said exactly after I’d fumbled to put on gloves that were two sizes too big (that’s what happens when you’re nervous and grab a pair of XL rather than M) and a face mask – backwards of course.  I stepped through the door and noted the sterile floor, the “brain” that controlled all of the different medicines and platelets that my brother was getting at the time. I mumbled something about how that room was the last place I expected to hang out with my brother-in-law.  He smiled easily, just as he usually does, and told me to relax.  He wanted to just to stay in the moment, forget about where we were or why, and just enjoy talking. And we did. While no, there was no ignoring the nurse coming in every few hours, or the big chart on the white board telling us all how his numbers are doing – everything from white blood cells to potassium being tracked with the hope of sending him home, I did find a way to relax. We truly visited, and my brother-in-law is a rock star.

He is doing so well. I mean, he is very sick and there’s no getting past that, but he looked really good for someone who is fighting for his life. He hasn’t lost his hair or his sense of humor, or his faith, for that matter (my BIL studied to be a pastor, and while it is not a passion I share, I fully respect his devotion). And we did talk about his illness and what may come.  We talked about how there is a time for questions about how he’s really doing, and a time to just enjoy the moment just like we would if we were wine tasting. For some reason, those words finally clicked with me. He was right.

We didn’t let the fact that he was sitting in a hospital bed stop us from laughing that day. Later in the day, my sister-in-law arrived and it was the four of us, laughing and joking around just as we normally would. It felt good, and normal, as strange as that sounds. I don’t think I looked at my phone much that day, because I was far too busy enjoying every single second I could sit in that chair and talk with my brother and sister.

Staying in the moment can be a really hard thing to do. I don’t know if it’s just a “me” thing or if everyone has a hard time with that – but I’m always thinking about where I need to be next. Admittedly, I have a really hard time putting down my phone and just focusing on what is in front of me. Oddly, the only time I don’t seem to struggle is when I’m at a Duran Duran concert, but it wasn’t always that way.  I can remember when bringing small cameras to the shows stopped being such a big deal – most venues allowed them. I took my camera to every show and spent a fair amount of time trying to take the perfect shots. And then one time – at the Sears Center show outside of Chicago in 2006 – I forgot my camera in the car. I didn’t take pictures and just enjoyed the concert. It was AMAZING. I enjoyed that show so much more, and yet I didn’t take a single picture to capture the memory. It is all in my head, down to the moment Dom came to center stage and played the opening melody to Ordinary World as our friend Sara leaned over and said “Welcome to the band, motherfucker.”  (Yes, we curse like sailors.) Oddly, it fit the moment.

From then on, my urge to reach down and grab the camera (or phone nowadays) shrank considerably. There are many shows when I don’t take a single picture. I would rather just dance, smile, laugh, and not have anything but the memories in my head when I leave.

I soak up every single second of those shows. I forget about the world outside, or what might happen the next day. I don’t think about work, or family, or stress. I just enjoy the music, the show, and the people – both those on the stage and off.  I’m starting to realize I sometimes need to experience real life that way too. There are times when I need to just put down the phone, or forget about what is going on at work, or what is going to happen tomorrow, and focus on the right here and now. Find yourself in the moment. I am still learning.



These words are like sand, just get blown away.

April and May are tough months for my family. On one hand, I’m delighted to celebrate the birthdays of my youngest, my best friend, and my sister. On the other, I tend to get a little melancholy when I think about my dad. It is the curse of losing a parent, and while I don’t dwell on it quite as much as I once did, admittedly – I still think about it. My dad would not be pleased, and I can almost hear his stern admonishment to focus on LIVING. So I try.

This year, in fact just last week, my family got some fairly devastating news. My brother-in-law has been diagnosed with Leukemia. He is 51, and we are very close. He is the big brother I never had. His wife is my husband’s sister, and our children (aside from my youngest) are very close in age. We have gone on numerous vacations and trips together, and have even talked about moving somewhere together to retire. Aside from Amanda, his wife is my closest friend, just to give you some context of what they mean to me, personally.

Many within my BIL’s family share an unfortunate genetic defect that makes them susceptible to Leukemia. His mother passed away from the disease about 8 years ago, and it would appear that it is now my BIL’s turn to fight. We all knew that it would come to this eventually, but I never thought it would happen so soon.

Why am I writing all of this? Well, we all get strength from different places, I guess…and right now, I feel pretty helpless. He’s in the hospital and will be for at least a month. Overall, the news is not great. He has some complications that make it all trickier than necessary, and there really isn’t much that can be done except to wait, think positive thoughts, and hope. I’m terrible at most of that. So, I’m writing. I need strength.

Ridiculously, I thought that after my dad passed away that I probably wouldn’t have to endure that kind of pain again for a long, long time. I don’t know what I was thinking. My mom is still alive, and she’s healthy. I figured as long as she didn’t get sick, everything would be fine. I never gave it much thought that anyone else would become ill. Ignorance and denial equal bliss, I suppose, and I was absolutely, blissfully, unaware.

When I first met my husband, it took him a long time to take me to meet his parents. Let’s just say his family is, well, tight-knit. The standard for significant others is very, very high. (No, I did not meet the standard. Surprise!) While the welcome mat wasn’t there for me at first, my brother-in-law has always been my ally. He took me under his wing, taught me the ropes, and pointed out some very hard truths to me when I needed them. Let’s just say my learning curve with the family was probably no less rocky than my learning curve with this blog and social media. <wide grin here>  It’s been a wild ride, and thankfully, my BIL knew what to say, how to reach out, and how to be a big brother.

My BIL is a Duran Duran fan, although he will admit that he prefers their earlier music (although he did love the first four or five songs on Astronaut).  He and I haven’t had a music chat session in a while, but he is about the only person in my family that genuinely knows the back catalog. He has versions of songs that I don’t have, and I love talking to him about music in general. He has the best vinyl collection from the 80s of anybody I know, and he has such a zest for life – it’s contagious.

A lot of people go through their pain privately. I envy those people in some ways because they tend to seem like they’ve got it together. Not me. I’m pretty much a “blurt it all out and take a deep breath afterward” type of person. My husband and his family are exactly the opposite. Stalwart, quiet, proper, and restrained. I hate it. No one talks, ever. I desperately need to talk. I wasn’t raised to be quiet. I’m Sicilian! So I come here. I blurt it out, and while it doesn’t fix the problem, it makes me feel just the tiniest bit better.

Given my choices of whom to talk to and when, I choose this blog and the people who read it. I can’t even say I know the majority of people who read each day. I don’t. I just know that when I have bad news, good news, or I need help – I come here. That says something about our community. We’re a family. A crazy, sometimes really dysfunctional and large family.  I wouldn’t have it any other way.