A sudden loss

Saturday morning I had written a long blog entry about stage 4 stomach cancer, and was planning on posting it later that day.  Then we received some tragic news.  My mom’s cousin’s husband passed away suddenly from a heart attack while working out in the gym.  He was 53 years old.  Man, it’s not like I needed a reminder this soon that life is fleeting.

Uncle Timmy had been a part of my life since I was young.  His kids, my second cousins, were just a few years younger than me, so I have lots of memories of time spent at their house – sleepovers, days in the pool, playing bumper pool and arcade games in the basement, going to the beach, and the annual “pig roast”, which really served as a family reunion.  Timmy spent many years working with kids, as he had a great way with teenagers and young adults, and I know he had a large impact on my brother and sister.  When Lisa was in high school, he became the unofficial athletic trainer of her basketball team, volunteering to get them into a gym and motivating them to stay in shape through the offseason.  And if Tim wasn’t a NJ State Trooper and so willing to provide advice and support to anyone that needed it, I’m pretty sure my brother Greg probably wouldn’t be allowed to drive a car in the state of New Jersey anymore.  Since I moved down to Virginia, I haven’t done a great job of keeping in touch with all of my extended family in New Jersey, so I can’t really say that I got to know Tim well while I was an adult.  But I have those memories growing up, and I know the impact that he had on our family.  He brought people together.  Once Meg and I hosted our annual “flip-cup” tournament for the second or third time, I started drawing inspiration from Timmy and Jeanne’s Pig Roast.  I was hoping that I could turn it into an event like that, a summer day where all of our local friends would plan to get together, along with some family members who would take a trip down.  That’s what made me think to break out a PA system to explain the rules and play the national anthem, and that’s what made me think to create a banner with the previous year’s winners on it.  These are things I grew up with, thanks in large part to Tim. 

So my family takes another hit this week.  The first thing I felt on Saturday was shock, as I had just seen Tim and Jeanne a few weeks earlier, when they drove 7 or 8 hours roundtrip to be at Megan’s visitation.  The second thing I felt was guilt, because less than an hour after hearing the news, I was outside, continuing to do the yardwork I had planned for that day.  When Megan passed, I wanted the entire world to stop and take notice.  I didn’t truly expect that, but I still couldn’t help feeling that way.  But I’m realizing that life goes on, with or without you.  That doesn’t mean that we shouldn’t take time to mourn and remember the loved ones that we have lost, and that doesn’t mean that it’s going to be easy or that the world is going to look the same to you ever again.   But the rest of the world isn’t taking a break for you, and that can be a tough thing to accept.

The third thing I felt is hard to describe.  I’ve recently noticed that something feels different when I think about death.  But first, I need to admit this - I have always been very afraid of dying.  I get nervous flying on turbulent planes, I don’t like participating in risky activities, and I’ve always struggled with the fact that we really don’t know what happens after you die.  I’ve also been very afraid of losing someone that I love.  If I didn’t hear from Megan for a few hours and she wasn’t answering her phone, my mind would start imagining the worst, that she got in a terrible accident or something.  And I worried that something would happen to someone close to me and I wouldn’t get to say goodbye. 

Last June, we went up to New Jersey for my sister’s bachelorette party.  While the girls were in Atlantic City, I sat out near the river in my parents’ backyard with my brother.  We sat out there for a while, had a few drinks, and talked about a bunch of things that I have since forgotten.  But I remember one portion of the conversation.  I’m not sure how we got on it, but I think we were talking about our grandparents on my mom’s side, and how we are lucky that they are still around and still such a part of our lives.  And I said how much it stunk that we lost both of my dad’s parents to sudden heart attacks.  Because I felt like I never got to say goodbye, I never got to open my heart and tell them I loved them.  So, I said, I hope it’s different with our surviving grandparents; I hope that we have some warning and can get a chance to say goodbye.  Because I wanted to make sure they knew how blessed I thought I was to have them in my life, how fantastic they are as people, and how lucky I was to be born into such a loving and stable family.  I didn’t want someone else to be taken from me suddenly without feeling like I had that goodbye.

A few weeks later, Meg went to the ER, and we started down this new path.  In a way, I felt like it was a cruel joke.  I said that I wanted the chance to say goodbye, and now I was going to have to watch the person I loved most battle a disease that most likely was going to slowly kill her.  It was like, “Here you go, take your time and say the goodbyes you asked for.”  I realized how selfish it was to say what I said then.  I don’t have control over when, where, and how the time is going to come for the people in my life.  If I want someone to know something, I need to let them know now.  That doesn’t mean I need to say goodbye to everyone like it’s the last time I’m going to see them.  But I need to show them through my actions the best that I can, and just make sure to take advantage of the time we have together.  If I feel like I’ve done that, then I won’t hold regrets over something that I never said, or the way that I left things the last time we spoke.  I’m happy that many in our family had a chance to say goodbye to Tim, even though they didn’t know it at the time.  He was in Florida last week for one of my other second cousins’ wedding, and I hope that they were able to create some memories that will now become so much more meaningful.  It’s amazing how so many of the most important moments in life seem like just any other day at the time.

I mentioned that the third thing I noticed is that something feels different when I think about death.  Somehow, I’m more comfortable with it now.  I don’t feel scared about dying, which is weird.  I always had this idea of how my life was going to go, and for 30 years, it went according to plan, pretty much perfectly.  I was terribly frightened of the idea that I would die before everything I planned had come to fruition.  But life can’t be planned.  And if I die tomorrow, I feel like I’d be able to look back on my 31 years and feel like I did pretty well for myself.  I think that’s what Megan thought when she told us that she wasn’t afraid to die.  At the time, I didn’t know how she could say that and seem so comfortable with it, but for some reason, now I feel like I understand.  I don’t know exactly why I have this feeling, or if it will fade over time, but I hope it’s here to stay.

Trying to find a new normal

It might seem a little early for a post about trying to get back to normal.  But the fact is, I’ve been trying to make things feel normal for a year now.  After Meg got an MRI done that first night in the hospital back in June, she relayed to me how the radiology assistant told her that life was going to be different now.  He said that as foreign as it seemed at that moment, she would eventually adjust to a “new normal”.  (At that point we still had doctors telling us not to worry, that Meg likely just had an infection, so these words made me really nervous.)  And it took several months, but eventually we settled into a somewhat “normal” routine.  Or, I guess, as normal as it could be under the circumstances.  Things never went back to feeling like they did before, and I wouldn’t say any part of those 9 months ever got easier.  But over time, it somehow started feeling normal to me.  Even if normal meant Meg had to get injected with medication that made her sick every two weeks.  Even if normal meant that no matter what we were doing, I had a constant underlying worry that we were slowly losing control of the cancer and there just weren’t any good treatment options out there.  And even if normal meant that after trying to be strong out in the world each day, we had to hold back tears just to say good night.

I’m not sure if it ever felt normal to Meg.  She never gave up hope that we would someday get back to our old life, one that centered on friends, jobs, and starting a family.  I think she had to maintain that hope to get through the days.   And while I obviously had the same hope as Meg, as I learned more about the lost battles of other stomach cancer warriors, I started hoping more and more to just maintain our “new” normal for as long as possible.  Because I felt like at least I was growing familiar with that normal.

The last day Meg was in the hospital, I spent some time talking with her oncologist alone in the hospital room.  He turned the discussion towards me, and said that he worries about people in my situation.  So much of my life had been focused on Megan’s care over the past year, and now that would leave a large void.  But for me, it goes so much further than that.  Meg has been the one constant throughout my entire adult life.  While I am blessed to have such a large group of friends from our days at UVA, I don’t have anyone I would call a best friend, because for me that person was always Megan.  And while I tried preparing myself as much as possible for what was likely going to happen, there were some things that I couldn’t prepare myself for.  Like the first night that I spent alone in our house last week, when I started crying in the middle of making myself dinner.  Or every time my phone buzzes in my pocket and for a split second I think, “probably Meg.”  Or when I don’t feel like doing anything because everything just seems a little different.

So I’m going to have to try to find a new normal again.  And I’m not quite sure the best way to do that.  I’ve spent two weeks sitting around, not feeling like doing too much.  But I have this feeling in my gut that says I need to take advantage of every day.  And I’m not sure that sitting around is going to help me get to the point of doing that.  So I’ve tried pushing myself into doing a few things. 

The Thursday after the memorial service, I went to a friend’s house.  I was able to laugh a few times, but it was too soon.  It just didn’t feel right to me, and was actually a little depressing realizing that life was going to go on as usual without Meg.  I missed her.  I went to another friend’s house this past Friday, and it was a little better.  I still missed her, but this time I knew what to expect, so it was more familiar. 

I quickly made a decision that I wanted to go forward with our band’s first scheduled gig on April 11.  We had booked it months ago, and Meg would have wanted us to do it.  It gets back to the goal of trying to make the most of the time that you are given.  Plus, playing guitar has always been one of the things that makes me feel most comfortable.  After Meg was diagnosed in July and I didn’t do much for several weeks, I was ready to have band practice before I was ready to hang out with a group of friends.  So in a way, it’s almost a form of therapy for me.

And I’m going to head back to work tomorrow.  Last week would have been too soon, and to be honest I could probably use another week.  But whether I do it tomorrow or a month from tomorrow, I’m going to have to deal with the same things.  So I’d rather try to deal with them now.

That being said, I’m not ready to “move on” yet, not by any means.  We went to visit Megan’s office today, and while I was ok with taking a few pictures and trinkets, I was not ready to tear everything down and clean it out.  That’s still Meg’s office, at least for now. I’m not ready for it to not be her office yet.  Same goes for the things in our house. 

Those last few weeks, Meg told me several times that she wanted me to live my life fully.  She told me that she knew I would be ok.  So I want to live life fully, and I want to be ok.  But I’m going to have to learn how to be ok with living life fully without Meg, which is something I never pictured I’d have to do.  So that’s my challenge: trying to make the most out of every day, but not rushing myself to do things before I am ready.  Once that settles in, maybe I’ll be able to feel somewhat normal again.  

Thanks

I wanted to start off by simply saying thanks to some of the many people who deserve a thank you from me. 

Thanks to everyone who came to the services for Megan last week.  This may sound like a form response, but I’m not really sure how else to say it – I truly appreciated everyone who took the time and effort to come.  I’ve been on the other side of that receiving line at a visitation/wake service before, and most times I wasn’t quite sure what to say or even know if the bereaved family wanted me there.  I’m sure other people might be different, but I will say this: as tough as it was to get through those days, seeing everyone that came helped me.  Even if you had nothing to say, it was ok.  It meant so much to me that you came.  You might have thought that it was such a small thing to do (which is what I’ve felt in the past), but it wasn’t.  You may have thought that you were just one person in a room of 200, but you weren’t.  I needed the support of each and every one of you, and it’s definitely changed the way that I view memorial services.  Please remember this in the future when other people in your life experience tragedy and you’re not sure whether or not they need the support of your presence. 

Thanks to everyone who took the time to send me a note of condolence.  Whether it was simply a signed card, a text, a facebook post/message, or a thoughtful handwritten note, again, I truly appreciate it.  I especially liked reading some of the notes about the ways that you will remember Megan and how she impacted you.  I’ve been meaning to respond to each of you individually, but I’m not sure when I’ll get around to that.  So thank you.

Thanks to everyone who has offered support that goes above and beyond.  This includes family, our local friends, Megan’s coworkers at Covance, and several others.  I know that I’m not the easiest person to provide assistance to, as I’m a pretty private and independent person.  But knowing that there are people there to help when I need it provides a level of comfort and support that allows me to feel stronger.

And thanks to everyone who made a donation to Can’t Stomach Cancer in Megan’s memory.  You donated over $25,000.  That’s unbelievable.  It’s a testament to the strength inherent in the network of family and friends that surrounded Megan.  I talked for 90 minutes with the founder of Can’t Stomach Cancer this week, and in the future I will be providing more information about what they are doing to help raise awareness, provide patient support, and generate funding for research.  But know that you have already begun making a difference for others fighting a disease that provides little opportunity for hope.

 

The fight continues, with a new chapter

(Please note: This is Adam writing.)

Megan had been talking about starting a blog for at least a year.  She always enjoyed reading the blogs of her friends and coworkers, and thought that she had enough interesting things to say that she should share them with others.  But she got stuck on one thing – a name.  She couldn’t decide what to call the blog.  Since it was just going to include general thoughts and wasn’t going to be about one thing in particular, she had a hard time trying to pick a word or phrase that could sum it all up.  (I recently had a hard time summing up her life into 4 pages, so I can sympathize with her attempt to find the perfect title.)  For months, she threw out ideas, some of which I liked, and some of which I didn’t.  I tried to help, but we could never come up with the home run, the one that said, “THIS is it!”  After a few months of trying, life got in the way, and the blog fell to the backburner.

For most of 2012, Meg didn’t talk about starting a blog anymore.  Then in December, she hinted that she might be ready to finally do it, for real this time.  She said that she had a lot of thoughts in her head that she needed to get out, things that were too tough to talk about in person, even with me.   I thought this was a great idea.  I knew she was having a tough time mentally, but she didn’t want to go to support groups or talk to someone, because those groups would make it harder to remain positive and to not break down emotionally.  She spent a few days setting it up without really telling me, loaded all the pictures on, and wrote the first two entries.  One day she emailed me a link and asked me to review it.  She never had to ask if I thought the title was a good idea.  She took something that I said to her one night when I was struggling to keep her spirits up, and she modified it to include both of us.  She told me that she made me an author and that I could contribute if I wanted to.  I fully intended to, but then her posts started getting so emotional, and I didn’t want to break her stride. 

Megan’s last post was on March 10, 2013.  Her liver, covered with metastatic tumors from gastro-esophageal cancer, was already on a downward spiral, and we were running out of options.  It quickly got worse, and Megan passed during the first hour of March 21.  I am so glad that she was able to leave us with two months worth of blog entries.  We had so many tough conversations over her last year.  Some of the things she said are burned into my head, but many of those conversations I won’t remember as time passes.  So to have a short record of Meg, in her own words, is a gift she left for us. 

But the story can’t end there.  Last summer, I scoured the internet looking for information about stomach cancer.  I found a few blogs that had some good information, info that I wasn’t finding anywhere else.  But many of those blogs had one common feature – the entries ended suddenly, without any warning.  There was usually a post about how everything was going well, then one about some sort of minor complication, and then that would be it.  I don’t want Megan’s story to end that way.  She could have named her blog “This is My Fight”, but she didn’t.  It’s our fight, and my end of that deal isn’t over.   I’ve only just started to figure out exactly what I can personally do to make a difference in the fight against stomach cancer; you will hear more about that in the coming months.  But what I do know I can do is at least try to finish the story on this blog, so that others can learn from our experience.  I’m an engineer, not a writer, so I’m not sure how easy this will be or how often I will post.  But I also have thoughts in my head that I need to get out, and I will try to do it here, openly and honestly.  I am hoping to write about the following things:

• What we learned about cancer during Meg's battle
• Info about stomach / esophageal cancer
• Things to be aware of as a caregiver
• My life as I try to deal with the aftermath of Meg's cancer
• Megan

I can’t promise that this is going to always be a positive blog, full of uplifting stories and memories.  I’m not really sure how I’m going to be feeling weeks or months from now.  But one of the things I’m most scared of is forgetting.  I don’t want my memories to become cloudy as the years pass by.  So I’m writing this for myself, but also hoping that some of you will continue to read it.  And I hope that at least one person scrambling for answers after hearing a stomach cancer diagnosis will be able to find this blog and quickly get up to speed on the things it took me 9 months to figure out.   

Hiatus

Sorry for the two-week hiatus.   I have had a rough couple of weeks following my 12th round of chemo on February 21st. 

I started a new type of chemo for round 12: Taxotere (aka docetaxel).  It has been a lot tougher than I anticipated.  The main side effects of Taxotere include:

• Low white blood cell count (this can increase your risk for infection)
• Low red blood cell count (anemia)
• Fluid retention with weight gain, swelling of the ankles or abdominal area
• Peripheral neuropathy (numbness in your fingers and toes)
• Nausea
• Diarrhea
• Mouth sores
• Hair loss
• Fatigue and weakness
• Infection
• Nail changes
• Vomiting
• Muscle/bone/joint pain (myalgias and arthralgias)
• Low platelet count (This can increase your risk of bleeding)

I have experienced most of these in the past few weeks, which might help explain why I haven't been feeling so well and have been MIA as a result.

I am hoping round 13 will be a bit easier on me as my body adjusts to the new chemotherapy regimen.

I hope to be back with another post soon!  In the meantime, continued prayers are appreciated!