Pancreatic Cancer: Know It, Fight It, End It

Wednesday, 13 November 2013

November is Pancreatic Cancer Awareness Month. One of the main awareness events that happens in November throughout the country are PurpleStride walks/5Ks to raise funds for the Pancreatic Action Network. 

Last year we went to Savannah for the PurpleStride walk.

That was 4 months after my dad passed away. He had been attending the walks in Orlando and we didn't get a chance to go with him, so I wanted to honor his memory at the Savannah walk.

It was hard. Harder than I thought it would be. While I'm glad we went in his memory there is a small part of me that thinks it was too soon.

At the last one my dad attended in Orlando he told me spoke in front of the crowd as one of the survivors.

It was hard last year knowing he was no longer a survivor. Knowing he wouldn't be going to any more PurpleStride walks and speaking to the crowd.

I've been flip-flopping over whether I wanted to make the trip to Savannah this year to do the walk again (Savannah is the closest one to us). A part of me wanted to go to continue honoring his memory.

But a part of me didn't. I admit to being somewhat bitter. I didn't want to go to an event that would be a constant reminder that my dad is no longer here. I didn't want to go to an event and raise funds for treatment and a cure that is too late for my dad. Yes, just a little bit bitter.

I am absolutely not saying that it isn't important to keep raising funds for pancreatic cancer research, treatment, and cures for the people who are currently fighting this disease, and for the people who are yet to be diagnosed. It is important. The 5 year survival rate for this type of cancer is just 6%. (My dad fought it for 3 years). It's the only major cancer with a 5 year survival rate in the single digits and has remained that way for 40 years.

There are no early detection methods and the symptoms that do appear could be attributed to other medical conditions (my dad was first diagnosed with pancreatitis). More than half of the diagnoses are made in the latter stages. Surgery offers the best chance, but only about 15% of cases are caught early enough for this surgery...and even with surgery this cancer recurs in approximately 80% of patients.

So yes, more research is desperately needed. Only about 2% of the National Cancer Institute's budget is allocated to pancreatic cancer, the 4th leading cause of cancer deaths.

I'm not denying that there isn't a need in the pancreatic cancer community for events like PurpleStride to raise funds and awareness ... there is ... I'm just saying that I'm also bitter and still mourning for my dad and that I know my participating won't help my father. Sometimes that is still hard for me to come to grips with.

I didn't know if I could put my emotions aside and do the walk this year. But the decision ended up being made for me. The Partners in Policymaking class that I'm involved in meets the 3rd weekend of every month and the walk in Savannah is on the same weekend I need to be in Columbia for class.

I won't be at the walk this year, but I can still donate, raise awareness, and always, always honor and remember my dad.

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Remembering My Dad

Friday, 12 July 2013

I dreaded this day coming; the one year mark to end my dad's 3.5 yr battle with pancreatic cancer.

"Eulogy for dad" has quickly become one of the top search phrases that have landed people on my blog. I hate that. But every time I see that phrase has led someone to my eulogy for my dad, I say a little prayer for the person who did that search.

Thank you all for your suggestions on what I should do to mark this day. I realized that last week when we were on our vacation we were doing things my dad would've loved to do. He loved being outdoors ... going for walks, hiking trails etc. He would have loved the pictures I shared. He would have laughed, and been surprised, at us continuing our walk in the rain to the waterfall. I could hear his voice in my head, teasing me about that, exclaiming that I took the kids out in the rain.

So today, to remember my dad, this is my to-do list:
- Have one of those good, long, ugly, hard cries
- If the rain holds off, take kids for a bike ride
- Pull up YouTube and listen to the hits by the Four Seasons: Working My Way Back To You, Big Girls Don't Cry, Sherry, Candy Girl, Walk Like A Man because when I was growing up I remember my dad listening to and singing those songs
A lot.
- Sit down w/Kayla and Lucas and look through pictures of my dad
- Pull out the old video tape from when Kayla was born and cross my fingers that I have my dad on that tape
- Write messages with the kids, to my dad, on Flying Wish Paper and send the wishes up in the sky
- Wear our Purple Stride Pancreatic Cancer walk shirts
- Wear our Boston Red Sox caps
- Take the kids bowling
- Smile
- Make a donation to the Pancreatic Cancer Action Network
- Order flowers to be delivered to FL so someone can place them on my dad's grave site
- Try not to relieve what I was doing every hour of the day this time last year
- Probably have one more good cry

 

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The Last Pictures

Thursday, 4 July 2013

I spent last July 4th with my dad.

I knew since he decided to stop his chemo treatments (he didn't feel like they were working anymore) for pancreatic cancer that we would inevitably have to say goodbye to him sooner rather than later.

But last July 4th I wasn't expecting it to be so soon after that day.

July 4th was his last good day. The last day he was really alert, more mobile (although he still couldn't walk because of the blood clots in his leg), in great spirits, and 'with it' in his conversations with us. I guess it was something like a last 'surge' before his body shut down.

We left the next day, Thursday - July 5th, and exactly one week later he passed away. I still can't believe he's gone. I can't believe it's almost been a year since I said goodbye to my dad.

The days to that one-year anniversary are hurtling faster and faster towards me and I just want to stop time. I don't want July 12th to get here. I just want to skip over that day. I don't want to have to remember and associate July 12th with his death. I don't want to have to associate the July 4th holiday as the last time he had a good day, and that there are no more July 4th celebrations for him.

I don't like remembering that he's not here anymore.

As painful as these pictures are to look at I also cherish them ... the last pictures I have of my father.

Since I can't avoid July 12th I'm wondering what I can do to honor my dad on that date. We aren't going to be in Florida to visit his grave site ... so what can I do at home for him? For myself? For Kayla and Lucas to acknowledge the significance of this date? Any suggestions for something else besides maybe releasing balloons?


 

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Photo Booth Fun

Monday, 19 November 2012

We ended the PurpleStride walk with some photo booth fun. It was a nice way to decompress after the walk ... and the kids really enjoyed picking out silly hats and glasses!

 

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PurpleStride Savannah

Sunday, 18 November 2012

This weekend we drove to Tybee Island, GA for the Pancreatic Cancer Network's PurpleStride 5K.

It was a chilly and windy walk/run on the beach, but I'm glad that we went in memory of my dad.

They had a short kids' run and then there was the 5K Run/Walk. The wind really started to get to Kayla so Joe took her back up on the pier and Lucas toughed out the rest of the walk with me. Ok except on the way back when a police officer patrolling the beach offered us a ride back ... and Lucas wanted to ride on the jeep; so we almost made the 5K.

It was an emotional day thinking about, and remembering my dad, and wishing he was still here with us.

Glow sticks to light it up purple for hope and remembrance of loved ones.

 

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Purple Stride

Monday, 12 November 2012

Today is exactly 4 months since my dad lost his battle with pancreatic cancer.

For the past 3 years he participated in the Pancreatic Cancer Network's Purple Stride walks to raise awareness and funding for pancreatic cancer research.

One of my regrets is I didn't have a chance to make it to FL to walk with him in one of these walks.

Last year he spoke as a survivor. I have tears just thinking about that. Last year: a survivor. This year: he won't be there.

His memory and advocacy efforts will continue though. My brother and his family, and my dad's wife and her family, all walked together in a Purple Stride event in TN last month.

I found a Purple Stride walk in Savannah, GA and my family will be walking in honor, and memory, of my father.

The five-year survival rate for pancreatic cancer is a mere six percent. Nearly 44,000 people will be diagnosed with pancreatic cancer this year.

November is Pancreatic Cancer Awareness Month. I'm pledging to be a visionary in the fight against pancreatic cancer.

If you can donate to our team please know it is much appreciated!



Click Here to Donate

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Military Funeral

Wednesday, 25 July 2012

Writing can be cathartic and I need cathartic right now.

While I don't mean to over-post on my father's death I do want to write about his funeral. I feel like this is the final chapter in my journey of saying goodbye to him. I need to finish this chapter before I get back to life blogging about our vacation to Denmark (no I still haven't finished those posts!), and the NDSC convention and whatever else comes our way.

I have been a part of the military since the day I was born. My dad served 20 years in the Air Force and I knew a military funeral, steeped in tradition and ceremony, would be so very emotional. As if a funeral for your parent isn't emotional enough on it's own accord. I knew there would be an honor guard, a flag-draped coffin, the folding and presenting of the flag to the next of kin, the volley salute, and the playing of Taps.

I saw my father take his last breaths. I saw him in the casket at the viewing the day before the funeral. I was numb. It was, and really still is, surreal.

Seeing his flag-draped coffin being taken out of the hearse by the military honor guard somehow made it that more real.

Even though it was the same casket in front of me during the funeral service, when I saw it at the cemetery it hit me harder and I kept thinking, "That's my father. That's my father in that casket. This is really happening."

I wasn't prepared for those emotions. And I most certainly wasn't prepared for the emotions I felt when I glanced over at my brother. My brother, who was enlisted in the Air Force and then the Reserves, and who, a couple of years ago, commissioned in to the Army...my brother in his Army Dress Blues. He was standing on the path the honor guards were walking with the casket and he was saluting. (As was Joe, in his Air Force Service Dress). It wasn't that they did anything unusual, because of course they would be saluting a flag-draped coffin of a veteran; standing at attention and rendering respect and honor for the deceased. But this was my brother, and he was saluting our father's casket and it hurt my heart to see that, because I know that he was struggling with composure just as much as I was. The unbelievable-ness that we were burying our father much sooner than we ever thought we would be.

After the somberness of the flag-folding and presenting to his wife I prepared myself for the volleys they were going to fire.

Each of the three shots made me cry harder than the last. Each of the shots made it more final. I wanted to scream out "no!" with each of the shots. I just wanted my father back.

When the playing of Taps started I thought my knees were going to buckle. I wanted nothing more than to crumble to the ground and sob until I had nothing left. I didn't want to be standing there, having my father honored with the playing of Taps. I wanted to be back at his house talking about the Red Sox. This description of Taps couldn't be more accurate, "There is something singularly beautiful and appropriate in the music of this wonderful call. Its strains are melancholy, yet full of rest and peace. Its echoes linger in the heart long after its tones have ceased to vibrate in the air.        
                      - from an article by Master Sergeant Jari A Villanueva, USAF

I described the witnessing of a military funeral for one's own father as "poignantly beautiful, knee-buckling, and heart-breaking all at once."

 

 

May you rest in peace now Dad, your body free from the pain of cancer, and knowing that you gave it one helluva fight for nearly 3 years. Goodbye, Dad, I love you.

 

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My Eulogy For My Dad

Thursday, 19 July 2012

I wasn't sure I would be able to write a eulogy for my dad, but I wanted to honor him, so I felt this was something I needed to try and do. I hope it would have made him smile, and would've made him proud.

Thank you all for being here today to honor my father.

As I started this eulogy I wondered how I would ever sum up 59 years of his life. I realize no matter what I come up with to say about him it won’t do the scope of his life justice, for he had a full life and was loved by many.

My dad was born in Norwich, CT on Dec 4, 1952. He grew up in the small town of Plainfield, CT. The stories I remember him telling centered around life going to a Catholic school where he had a ruler whacked across his knuckles by a nun on more than one occasion and playing Little League baseball. Playing ball was one of his favorite childhood memories and in fact, just a couple of months ago he wrote this: “May 27, 1965. This was the day I hit my first home run in little league. I usually can't remember yesterday, but certain times of your life you never forget and this was one of those times.” 

My brothers and I have favorite childhood memories involving our dad and baseball, well…technically softball. He played on a team at Hanscom AFB. We spent many a night on the bleachers and around the field watching those games. He played left field and he wasn’t one who would watch the ball fly over the fence. He wouldn’t just jump up to make an attempt at catching it either. Even if there was no chance of catching the ball he would run and climb that chain link fence and stretch out his arm to try and deny someone a home run. And then there were the Home Run Derbies where we enjoyed watching our dad smack quite a few over the fence and bringing home a trophy or two. His love of the sport made me eager to join the softball team when I was in 7th and 8th grade. I wanted to play left field, just like my dad, but that’s about as much as I did that was like him when it came to softball!

In 1971 my dad left his hometown and joined the Air Force. He was stationed at Sheppard AFB, TX (where I was born) and did a very remote 1-yr tour to Alaska. He was stationed at Plattsburg AFB, NY where Michael was born. We moved to Ramstein, Germany where my memories are of his friend, Ken Bachard, and him in the living room singing along to the songs “Walk Like A Man”, “Candy Girl”, “Sherry Baby” and “Big Girls Don’t Cry.” Now every time I hear one of those songs I’m transported back to our living room at Ramstein.

After Germany he was stationed at Hanscom AFB, MA where he gained another son – Ray, and where his son Steven was born. Living in MA meant we were close enough to attend the Beausoleil family reunions at his dad’s house. This consisted of big backyard BBQs, plenty of beer, lots of horseshoe-throwing, foot races between his brothers, and roasting marshmallows in the big fire pit.

After Hanscom we went back to Germany, this time to Zweibrucken AB. Finally, his last duty station was at McGuire AFB, NJ where he retired in 1991 after serving honorably for 20 years. It was in NJ that he gained two more daughters – Janet and Mitsy.

If you were lucky enough to eat a meal prepared by my dad than you knew he was a great cook – and he should’ve been after 20 years in the food service industry! I used to call him up to ask for help in making this recipe or that dish – particularly how to make the candied yams he used to make for Thanksgiving.

To know my father was to know he was passionate about sports in general, and the Red Sox in particular. His rants on Facebook during a game made me smile and shake my head. As we were watching the games on TV my husband would sometimes say, “I bet your dad is going crazy on Facebook right now.” I didn’t even need to watch the games, I could read his status updates to know what was going on. He would complain about the manager leaving the pitcher in too long because of his ERA and I’d comment, “but Dad, it’s only the 4th inning!” and he’d go on and on about the pitcher’s stats against this batter in this stadium and in this situation. I think he missed his calling, he should have been a commentator, announcer, or manager. I’m going to miss his posts throughout the rest of this baseball season, especially since he would have plenty to say with the Red Sox’s current record!

My dad was a proud grandfather. I remember calling him from the hospital to tell him I had just given birth to my daughter, and that she had Down syndrome. I don’t know what reaction I was expecting as I was still absorbing the news myself. What he said was, “So?” He asked if she was healthy and going home and I said yes and he said that’s what matters. That was the reaction I needed, for someone to tell me “so…” and for me to see that it wasn’t a big deal. He supported us in the annual Down Syndrome Buddy Walks and tried to make it every year that he could. He deeply loved all his grandchildren and doted on them whenever he could and bragged on them whenever he had the chance.

After growing tired of the winters in NJ, my dad and his wife settled in FL where they fully enjoyed life and being near family for the past several years. My dad enjoyed being outdoors and spent many a day sprucing up the yard, building a pond, going to flea markets, camping, walking the trails at state parks, fishing, and riding a tandem-bike with his wife.

When he was diagnosed with pancreatic cancer in 2009 he didn’t let that stop his active lifestyle because he wasn’t going to let cancer define him. He didn’t sit home with a ‘why me’ attitude because he was determined to not let this disease take over his life. He was thankful for each day that he woke up. His faith never wavered, he vowed to fight it with everything he had – and he did, bravely and with a strong, positive spirit, for nearly 3 years.

I don’t think there was a person who met him who didn’t like him. I’ve heard from many people that he was such a genuinely nice guy with a good heart who easily accepted you in his life. He was generous with his time and helped those who needed it.

His words of wisdom were, “Be thankful for what you have and enjoy each day you’re given. And don’t get upset over the little things because it’s simply not worth it.”

His presence will be missed by all who knew and loved him.

 

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My Dad - 1952-2012

Tuesday, 17 July 2012

This past week has been the hardest week of my life.

My father passed away on Thur, July 12 and nothing could have ever prepared me for that.

I arrived on Mon afternoon and when I walked in to his hospice room everyone was sitting silently around his bed. His wife roused him enough to let him know I was there and I'll never forget the look in his eyes as he said my name.

For the most part he stayed in a sleeping state and when he was awake it was more like a semi-consciousness. When he was semi-conscious he was experiencing the terminal agitation, which even though I read about it, it's not the same as seeing it first hand.

My brother and I stayed in the hospice room Monday-Wed along with his wife. It was so hard seeing my dad in that condition, knowing he wasn't really there with us. I couldn't believe the change in him since we were there on the 4th of July.

On Wed the chaplain arranged to have communion in my dad's room with all his family. After that he brought us all to the family area and told us about a book called Final Gifts. A lot of time the person who is dying waits until everyone has left the room and chooses that time to pass away - as their gift to you. He was saying that my dad might be hanging on waiting for a moment like that and we were always in his room surrounding him and maybe we wanted to talk as a family and go out to eat etc. So we did just that and gave him some time alone in his room if that was what he had wanted and was waiting for.

He was really agitated on Wed afternoon and they added Haldol to his meds. We finally got him in what seemed to be a pretty comfortable position and he basically didn't wake up after that. I went to bed and wanted to pray for another day, but I knew if I had another day I'd ask for another one after that, and another. I knew that having another day wouldn't be enough. Instead I prayed for my dad to have peace and to not suffer anymore. I knew he wouldn't have wanted to be in the state he was in for very long.

He slept all through Wed night, unlike the previous nights where he was up a lot with the agitation. We didn't even hear him coughing throughout the night like he had been. We woke up Thur and it seemed like he was so peaceful. His heart rate was regular and his breathing steady, although we knew he had pretty bad lung congestion. It seemed like he could've gone on like he was for another week or so and we were in limbo. That morning I asked the nurse what she thought and she agreed - that in his present state he probably could go another week like that; because he was young, active and breathing ok. She even said, "Do I think it'll be today or even tomorrow? No, not with how he is now."

His wife and I left that morning around 10 to go have breakfast. I came back that afternoon around 2ish with one of my brothers. No one was in the room and when we walked in I was stunned to see how my dad's breathing had changed...he was breathing very rapidly and noisily, nothing like he was when I left him that morning. I kissed him on the head and told him, "Remember Dad, if you need to go it is ok. We all understand." Eventually everyone had come back from various errands and were either on the patio or in the family room.

The nurse tried a few things to make him more comfortable and to hopefully get his breathing to slow down. She said to make sure we pushed the button for the bolus on his morphine every 15 min. I was in his room alone, sitting in a far corner, I got up to give him the extra dose of morphine and sat down in the chair by his bed.

My brother and my father's wife came in the room at that time and a few seconds later so did the nurse. She said his breathing had slowed to a more normal rate and as we were all staring at him something changed with his breathing. All of a sudden he took his last breaths and the rest of the family was called in to his room. We were all around his bedside with him. I just couldn't believe that as of that morning he seemed like he would hang on for another week and by that evening we were saying our final goodbyes to him.

I can't believe he is gone. I can't believe I won't ever see my father again or hear his voice. He was too young and had so much life left in him. I miss him more that I ever imagined I would.

Some of my favorite pictures from when I was a girl...

 

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Preparing to Say Goodbye

Monday, 9 July 2012

If you've been reading my blog for a few years you might remember that in 2009 my dad was diagnosed with pancreatic cancer.

We celebrated when he was declared in remission in 2010.

We were frustrated when it was discovered that the cancer metastasized to his liver in Nov 2011.

Over the past several months he's been through a lot. The cancer spread to his lungs. He was on his 3rd different chemo; side affects were awful. His CA19-9 (cancer marker in blood work) kept rising. It should be around 37. When his numbers reached 5000 he felt like chemo wasn't working any more and he discontinued it. He was still doing relatively well, considering. He would sometimes have a lot of pain, but mostly he kept active. He and his wife still took long walks, rode their tandem-bike, and camped.

In June, while we were in Denmark, we received word that he was in pretty bad shape - in a lot of pain - and checked in to the hospice house. They eventually got a morphine pump in his port and he was able to go home after several days.

We got back from Denmark on Sun and by Wed we were in FL. It was great seeing my dad and knowing he was 'ok.' even though he was on morphine.

The next day, Thur, he had swelling and pain in his leg and it was suspected that he had a blood clot. We later found out blood clots are common with pancreatic cancer. He checked in to the hospice house and by Fri evening was admitted to the hospital for treatment.

A few days later he went back to the hospice house for continued treatment and pain management and blood thinners for the 4 clots in his leg. We went home on Sunday.

We thought he would be going home soon after getting the blood thinners, but when he called me the following Sun he was still at the hospice house. He was in a lot of pain in his leg and wasn't able to walk. He didn't sound too well.

On Mon the kids and I drove back to FL. My dad had a great day on Wed - the 4th of July. He was peppy, lively, talkative, moving around a bit more, playing bingo with Kayla and Lucas.

We brought him outside to watch fireworks from the parking lot. 

On Thur we stopped by to see him before heading home and he was a little out of it -definitely not how he was on Wed.

He's steadily declined since then. On Sat he started sleeping most of the time. He's hard to rouse awake and when he does wake he's experiencing 'terminal agitation.' His voice is hard to hear and he's extremely weak.

I went back to FL on Mon and the change in him is unreal considering how he was on Wed. The nurses at hospice think he might have a week. Of course no one knows when it'll happen, but he's going through the stages.

I can't believe I have to say goodbye to my dad. I'm just not ready. I'm not ready for him to not be here. I am so saddened that he won't be around to watch my kids grow up and they'll miss out on having "Pepere" in their lives.

As I was packing this morning I debated whether or not to pack an outfit that would be acceptable for a funeral. I wondered if I even have such an outfit. And I wondered if I didn't, how would I even go shopping for such an outfit? I hate this.

I hate seeing my dad like he is - so weak. I hate knowing his time is coming nearer. But I know he has fought a good hard battle with this pancreatic cancer - almost 3 years. Longer than they originally thought he would have.

I know his body needs some peace and to be pain-and cancer-free now. You can never prepare for saying goodbye to a loved one. No one ever said it was easy. Praying God will surround us all with some peace and strength during this time.

 

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