The Lord came to me a little early this year – in way more than a manger. Not that he'd ever been away, I just hadn't been paying enough attention. Unfortunately, in my case, my star was about the size of a ping-pong ball in my pancreas.
Thankfully, even though the ping pong ball is gone, the light still shines. I hope that God's light finds you this Christmas and throughout the New Year.
I made my first post-op visit to my surgical oncologist (my revered Dr. August) today (Christmas Eve). He gave me full clearance to enjoy my Christmas. If nothing else, my timing has been good. I went in for my Whipple procedure on the Monday after Thanksgiving – so got to enjoy that. I've been able to be home with the kids for the holiday season. And now I can wait up for Santa tonight.
It's been all about recovering from this major surgery since Dec 1st. The cancer, and fighting it further, is secondary right now. We'll get to that after New Years.
I've had two ports in my abdomen since the surgery. Til today!
The one was a feeding tube that hasn't been used since the day before my discharge from Robert Wood Johnson Hospital (on 12/7). It's been there in the event that my new and reduced digestive system didn't tolerate food well. Fortunately, that has not been the case at all. I've been eating like a champ and have recovered more than half of the pounds I'd lost. The other port has been collecting leakage from my newly assembled piping. The volume has been decreasing in the 2+ weeks since I've come home. The volume is so small now that the amazing human body can manage it (the healing) without this artificial collection system. Each came out relatively painlessly.
I also learned from Dr. August that I should not be lifting >10 pounds until February – which really surprised me. I've already crossed that line actually. But with the danger of having a hernia, I'll try and stay on the safe side of it for the next several weeks. Also, surprisingly, he gave me the go-ahead to drive. – which I actually don't feel quite up to. I'll just work on getting in my walking in for now.
Next up is my first appointment with my medical oncologist, Dr. Bruno Fang, on January 2nd, to start a new year of healing.
So…please go out and celebrate Christmas with your loved ones. This is the beginning of so many good things to come. We all have much to be thankful for. Remember those with less. Hug the kids extra. Peace and love…
Wednesday, December 24, 2008
Wednesday, December 17, 2008
THE TUNNEL
In the spirit of sharing both the good and the bad on this blog, having it be a therapeutic space and so somewhere to practice the art of letting go, and forgetting that that there are so many of you out there reading this (but remembering that you are all dear to me) – here's a shot at a "poetic" recap.
THE TUNNEL
Goin down the road with Emmanuel.
Still waiting to grow up, powerful and young at 42.
Poised for another glorious birthday marathon
through my beloved streets in just a few weeks.
Grooving on the soundtrack to the most blessed life known.
Goin down the road with Emmanuel.
A little stomach setback taken in stride.
On the new-to-me medical highway a week later,
focus shifts, the ante is upped, as things turn orange.
No liver virus is a mixed bag; each answer begs more questions.
The stakes rise and the ride progresses to gloomier places.
Exits slide by to the left and right, tempting in the rear-view.
Goin down the road with Emmanuel.
“Covering all bases”- one time precautions - become mile markers of doom.
Fear challenges hope by Halloween as worst-case scenarios loom.
My Sweetest Three pay the tunnel toll with me.
The wheel more anchor than steering.
At each off ramp, I pray for the best result at that moment.
The driver tangibly next to me always delivers.
Goin down the road with Emmanuel.
Destination unknown – now as ever.
Trust in him and dread battle inside my heart and head.
Needing a misdiagnosis or minor miracle,
rough roads remain at best…or worse.
Challenged by "thy will be done"; down with his plan unless it undermines mine.
My directions never included a premature dead end.
Goin down the road with Emmanuel.
Buoyed through surgery by the whisper of a thousand prayers.
Emerging from that tunnel saved by sure hands and miracle-giving family and friends,
all packed into a station wagon cruising towards brighter sunshine.
A life once lost now gained, where only precious days remain.
Though the sword of Damocles dangles above my road to an unknown end – that's okay.
Still goin where the water tastes like wine.
I wouldn’t have it any other way.
THE TUNNEL
Goin down the road with Emmanuel.
Still waiting to grow up, powerful and young at 42.
Poised for another glorious birthday marathon
through my beloved streets in just a few weeks.
Grooving on the soundtrack to the most blessed life known.
Goin down the road with Emmanuel.
A little stomach setback taken in stride.
On the new-to-me medical highway a week later,
focus shifts, the ante is upped, as things turn orange.
No liver virus is a mixed bag; each answer begs more questions.
The stakes rise and the ride progresses to gloomier places.
Exits slide by to the left and right, tempting in the rear-view.
Goin down the road with Emmanuel.
“Covering all bases”- one time precautions - become mile markers of doom.
Fear challenges hope by Halloween as worst-case scenarios loom.
My Sweetest Three pay the tunnel toll with me.
The wheel more anchor than steering.
At each off ramp, I pray for the best result at that moment.
The driver tangibly next to me always delivers.
Goin down the road with Emmanuel.
Destination unknown – now as ever.
Trust in him and dread battle inside my heart and head.
Needing a misdiagnosis or minor miracle,
rough roads remain at best…or worse.
Challenged by "thy will be done"; down with his plan unless it undermines mine.
My directions never included a premature dead end.
Goin down the road with Emmanuel.
Buoyed through surgery by the whisper of a thousand prayers.
Emerging from that tunnel saved by sure hands and miracle-giving family and friends,
all packed into a station wagon cruising towards brighter sunshine.
A life once lost now gained, where only precious days remain.
Though the sword of Damocles dangles above my road to an unknown end – that's okay.
Still goin where the water tastes like wine.
I wouldn’t have it any other way.
Friday, December 12, 2008
Recovering Remarkably
It has been nearly a whole work week since I got home and my body has certainly been on the job and accomplishing much it seems.
I am pleasantly surprised (again) with my system's response to the introduction of food, tolerating everything I've tossed down. I have a good appetite and all of the plumbing seems to be functioning well. I try to eat often with smaller portions. Having said all that, I am still about 13 pounds below my "fighting weight"- which is where I have been, more or less, since my return home.
I am in discomfort moving around but it is getting easier daily. I can go up and down our stairs and am able to interact with the kids more and more. On Sunday, picking up more than 2 books was a challenge; a gallon of milk was beyond me. Both are doable now.
My pain is being managed beautifully by a Fentanyl patch.
Jacquelyn, Ana and Noah appreciate that I've been able to shower a couple of times.
I've had a nurse visit three times this week to check on my wounds and change my dressing. I still have a capped feeding tube port – just in case I should need it because my GI system stops cooperating. I also have a drain port on my pancreas. The amount collecting in my reservoir has decreased significantly meaning that my system is tightening up (i.e., less leakage).
Sleep is my weak link. I can only get about 5-6 hours in each night somehow. I try to make up the rest in an afternoon nap. I don't know if that's enough – seems like I'd need more – but it doesn't seem to be inhibiting my recovery too much so far.
The kids are respecting papa's boo-boo by not playing too rough around me and expressing their love more gingerly. Okay…so they are not "listening" any better, but I can't expect a little surgery to solve the independent streaks of two two-year olds.
My Jacquelyn is doing well – managing her third baby with incredible patience. She is an amazing nurse, wife and mother. I know that those of you that know her are not surprised.
There's still a long way to go for us – but so far, so great! I know that the Lord is still with us every gentle step of the way, clearing obstacles.
Your continued thoughts and prayers are making it easier for us and appreciated immensely.
May God bless each of you as he has blessed us.
I am pleasantly surprised (again) with my system's response to the introduction of food, tolerating everything I've tossed down. I have a good appetite and all of the plumbing seems to be functioning well. I try to eat often with smaller portions. Having said all that, I am still about 13 pounds below my "fighting weight"- which is where I have been, more or less, since my return home.
I am in discomfort moving around but it is getting easier daily. I can go up and down our stairs and am able to interact with the kids more and more. On Sunday, picking up more than 2 books was a challenge; a gallon of milk was beyond me. Both are doable now.
My pain is being managed beautifully by a Fentanyl patch.
Jacquelyn, Ana and Noah appreciate that I've been able to shower a couple of times.
I've had a nurse visit three times this week to check on my wounds and change my dressing. I still have a capped feeding tube port – just in case I should need it because my GI system stops cooperating. I also have a drain port on my pancreas. The amount collecting in my reservoir has decreased significantly meaning that my system is tightening up (i.e., less leakage).
Sleep is my weak link. I can only get about 5-6 hours in each night somehow. I try to make up the rest in an afternoon nap. I don't know if that's enough – seems like I'd need more – but it doesn't seem to be inhibiting my recovery too much so far.
The kids are respecting papa's boo-boo by not playing too rough around me and expressing their love more gingerly. Okay…so they are not "listening" any better, but I can't expect a little surgery to solve the independent streaks of two two-year olds.
My Jacquelyn is doing well – managing her third baby with incredible patience. She is an amazing nurse, wife and mother. I know that those of you that know her are not surprised.
There's still a long way to go for us – but so far, so great! I know that the Lord is still with us every gentle step of the way, clearing obstacles.
Your continued thoughts and prayers are making it easier for us and appreciated immensely.
May God bless each of you as he has blessed us.
Sunday, December 7, 2008
Back Home! The Tools of a Lovely Recovery
And on the 7th day – just one week after lighting the first Advent candle, that of hope, in church - the kid comes back home to rest!
I believe that a miraculous combination of the astounding wonder and power of medicine, the human body and God that have allowed this to be so.
Maybe it's my inspirational aspirator (my preferred name for the incentive spirometer that I use hourly to keep my lungs clear and exercised) – or - my well-performing Jay-Z grenade (my pet name for my Jackson-Pratt reservoir that collects pancreatic fluid from my right side) – or the steady epidural (and now patch-provided) stream of Fentanyl that has effectively kept the edge off of my pain since the surgery, but…
I am doing remarkably well with my recovery.
The original – likely conservative and more typical – 7-10 day estimate became 7 days with my release today (Sunday, 12/7).
I have been lucid virtually throughout – including some cool dreams of being chased from soccer games by tiny crocodiles through tiki bar settings in the backyards of Queens.
I was walking around on Day 2, up to three laps around the hospital floor and feeding the intestines via a tube on Day 3, had an uncomfortable nose (ng) tube pulled and a precious kids visit on Day 4, off the epidural and urine catheter and onto clear liquids on Day 5 (Friday) and taking in solids with more kids time on Day 6.
I am very tired but otherwise very good. I can walk around gingerly. It is looking like the recliner is going to be my best friend for the next several weeks.
The kids are taking it all in stride and are expressing their love by laying their heads on my thighs and kissing my hands. Their pure and positive energy will dramatically help their Papa get better after his time at the "doctors".
I've truly been continuously blessed by God every day and step of the way.
Thank you all for helping it to be so with your thoughts, prayers, calls and visits.
With much love…
I believe that a miraculous combination of the astounding wonder and power of medicine, the human body and God that have allowed this to be so.
Maybe it's my inspirational aspirator (my preferred name for the incentive spirometer that I use hourly to keep my lungs clear and exercised) – or - my well-performing Jay-Z grenade (my pet name for my Jackson-Pratt reservoir that collects pancreatic fluid from my right side) – or the steady epidural (and now patch-provided) stream of Fentanyl that has effectively kept the edge off of my pain since the surgery, but…
I am doing remarkably well with my recovery.
The original – likely conservative and more typical – 7-10 day estimate became 7 days with my release today (Sunday, 12/7).
I have been lucid virtually throughout – including some cool dreams of being chased from soccer games by tiny crocodiles through tiki bar settings in the backyards of Queens.
I was walking around on Day 2, up to three laps around the hospital floor and feeding the intestines via a tube on Day 3, had an uncomfortable nose (ng) tube pulled and a precious kids visit on Day 4, off the epidural and urine catheter and onto clear liquids on Day 5 (Friday) and taking in solids with more kids time on Day 6.
I am very tired but otherwise very good. I can walk around gingerly. It is looking like the recliner is going to be my best friend for the next several weeks.
The kids are taking it all in stride and are expressing their love by laying their heads on my thighs and kissing my hands. Their pure and positive energy will dramatically help their Papa get better after his time at the "doctors".
I've truly been continuously blessed by God every day and step of the way.
Thank you all for helping it to be so with your thoughts, prayers, calls and visits.
With much love…
Wednesday, December 3, 2008
Coffee-flavored Kisses
We have very tangibly felt the presence of God throughout this entire experience. It is as if He has literally been standing with us – sometimes in front guiding, occasionally behind us pushing, always at least next to us supporting.
As each piece of information has come back during the time of figuring out what was wrong with me, we've prayed that the Lord would give us the best answer that He could at that moment. And He always has. We held that same prayer request up prior to my surgery on Monday and with my recovery since.
Going into my surgery I knew that I had two of three things going for me for sure – I am young (relatively) and in good health (relatively). The wild card was whether the cancer had been detected early enough so that its spread was minimal. As Jacquelyn indicated – per my good Dr. August – the preliminary prognosis is positive.
And, sure enough, the blessings keep flowing in that my recovery is going amazingly well. I can't help but attribute this to the combination of excellent medical and spiritual care that I am receiving.
I haven't been allowed even a sip of water yet, but Jacquelyn sneaks me coffee-flavored kisses. I've walked a couple of laps around the sixth floor with minimal pain. They will be putting some "food" through my feeding tube today. We may give the new & improved GI system a try with some clear liquids on Friday.
Each of you blessing me with your prayers and good thoughts has been for me the Body of Christ – my healing nourishment – throughout this illness.
Thanks and may God bless you back.
As each piece of information has come back during the time of figuring out what was wrong with me, we've prayed that the Lord would give us the best answer that He could at that moment. And He always has. We held that same prayer request up prior to my surgery on Monday and with my recovery since.
Going into my surgery I knew that I had two of three things going for me for sure – I am young (relatively) and in good health (relatively). The wild card was whether the cancer had been detected early enough so that its spread was minimal. As Jacquelyn indicated – per my good Dr. August – the preliminary prognosis is positive.
And, sure enough, the blessings keep flowing in that my recovery is going amazingly well. I can't help but attribute this to the combination of excellent medical and spiritual care that I am receiving.
I haven't been allowed even a sip of water yet, but Jacquelyn sneaks me coffee-flavored kisses. I've walked a couple of laps around the sixth floor with minimal pain. They will be putting some "food" through my feeding tube today. We may give the new & improved GI system a try with some clear liquids on Friday.
Each of you blessing me with your prayers and good thoughts has been for me the Body of Christ – my healing nourishment – throughout this illness.
Thanks and may God bless you back.
Monday, December 1, 2008
On Your Mark, Get Set, Go!
The marathon for life has begun! And Franco's off to a GREAT start. I am overjoyed to share that his surgery went very well today. After 7 hours in the operating room, the surgeon, Dr. August, reported that Franco was the easiest Whipple Procedure patient that he's ever had. Dr. August was cautiously optimistic that they've removed all of the cancer--the most wonderful news we could receive. Thanks Lord! And for all of you "angels" out there---your positive thoughts and prayers were heard and we are so appreciative. I'd like to express a very heartfelt, loving thank you to our ministers and friends, Stephanie and Seth. You've been like the water and food stations along the marathon route--refreshment and nourishment for our minds, bodies and souls.
Franco was in and out of the recovery room in a sprint-like fashion. He was awake and talking to us just hours after the surgery. And he was spewing so many jokes that I thought they might have hit the "funny bone" while in there somehow :-). Not that he wasn't funny before but....
The nurse was talking about getting him out of bed tomorrow to start moving around--amazing. Franco himself is in disbelief that he was so awake and aware tonight. He's tired of course, but looks terrific after completing the first few "miles" of this new race. The light is shining upon him ever so brightly. Go, Franco Go!
I'll keep you posted on his recovery. Much love and gratitude to all of you.
Franco was in and out of the recovery room in a sprint-like fashion. He was awake and talking to us just hours after the surgery. And he was spewing so many jokes that I thought they might have hit the "funny bone" while in there somehow :-). Not that he wasn't funny before but....
The nurse was talking about getting him out of bed tomorrow to start moving around--amazing. Franco himself is in disbelief that he was so awake and aware tonight. He's tired of course, but looks terrific after completing the first few "miles" of this new race. The light is shining upon him ever so brightly. Go, Franco Go!
I'll keep you posted on his recovery. Much love and gratitude to all of you.
Sunday, November 30, 2008
Thanksgiving and a Turning Point
It is absolutely unbelievable to me that in this scariest and seemingly most unjust time in my life – I also feel the most blessed, with so much to be thankful for.
I have been experiencing an incredible amount of love and support. Proving how beautiful people and life can be. The first and foremost - the most beautiful of all - is my Jacquelyn.
And the tangible comfort in feeling that God has been with us each step of the way. I am overwhelmingly hopeful that in His grace, I will get through this – one step at a time. That is what is making the difference for me now.
Medically, I am on the best edge on the continuum of an otherwise bad situation. If anyone is to survive this, it is me.
And having come this far, I am ready for the next necessary step. Getting this cancer out of me is the best thing that I can do right now. I am blessed to have the opportunity to do something substantial about it. Monday's (Dec. 1st) surgery is the beginning of my road to recovery.
Up until now, it has been all about finding out what was wrong with me and alleviating some of the symptoms. I am glad and relieved to be moving into the true healing stage. This is where I start to get better – to get back to my fantastic and now better life.
Thank you God and all of the angels that you have sent us.
I am sure that Jacquelyn will update this blog towards the end of the day tomorrow.
I have been experiencing an incredible amount of love and support. Proving how beautiful people and life can be. The first and foremost - the most beautiful of all - is my Jacquelyn.
And the tangible comfort in feeling that God has been with us each step of the way. I am overwhelmingly hopeful that in His grace, I will get through this – one step at a time. That is what is making the difference for me now.
Medically, I am on the best edge on the continuum of an otherwise bad situation. If anyone is to survive this, it is me.
And having come this far, I am ready for the next necessary step. Getting this cancer out of me is the best thing that I can do right now. I am blessed to have the opportunity to do something substantial about it. Monday's (Dec. 1st) surgery is the beginning of my road to recovery.
Up until now, it has been all about finding out what was wrong with me and alleviating some of the symptoms. I am glad and relieved to be moving into the true healing stage. This is where I start to get better – to get back to my fantastic and now better life.
Thank you God and all of the angels that you have sent us.
I am sure that Jacquelyn will update this blog towards the end of the day tomorrow.
Tuesday, November 25, 2008
The Half Time Perspective
I can't even begin to deny that it feels to me like I am being handed a bum hand here. (Only as far as the cancer is concerned, right now – certainly not in my life in general.)
There isn't much for me to feel "in control" about in this situation. It feels like this is all happening to me.
Yet one clear element of control that I do have is my perspective on what is happening to me. It is the choice between a glass half-full or half-empty perspective. There is really not much I can do except roll w/it.
There are so many lessons in this experience. Reminders really – things that we all know deep down but all-too-often forget.
When it comes to perspective, my friend Matt summarized it well on our walk to Church on Sunday. He can easily dwell on the loss of his son Kai at the far too-young age of 10 – on the inherent injustice of that, of what was taken from him. Alternately, rather than allow himself to be paralyzed by that perspective, he chooses (now) to celebrate all that Kai's time on Earth brought him – the gifts and what to do with it all now that Kai is gone.
I face a similar choice - to be empowered, to take some semblance of control or to fester in the negativity and go away quietly.
I see this experience as a wake-up call – albeit rude. Apparently God has been trying to get my attention otherwise and I haven't been listening. So, he's had to resort to more extreme measures.
I prefer to look at it this way…it as if I have lived the first 42 years of my life and am now going into the locker room for halftime. "The Coach" is going to chew me out a bit and there is going to be a course adjustment, a change in game plan for the second half. I have been given special gifts that I have not applied to anywhere near maximum effect thus far. I believe that the Good Lord has shown His light on me throughout this ordeal. How can I respond by continuing to hide my own light under a basket? I see it as if I am coming back out onto the field for the next 42 (I hope) years w/a different strategy. It all came from Him to begin with - He's just asking me to give a little more back.
There isn't much for me to feel "in control" about in this situation. It feels like this is all happening to me.
Yet one clear element of control that I do have is my perspective on what is happening to me. It is the choice between a glass half-full or half-empty perspective. There is really not much I can do except roll w/it.
There are so many lessons in this experience. Reminders really – things that we all know deep down but all-too-often forget.
When it comes to perspective, my friend Matt summarized it well on our walk to Church on Sunday. He can easily dwell on the loss of his son Kai at the far too-young age of 10 – on the inherent injustice of that, of what was taken from him. Alternately, rather than allow himself to be paralyzed by that perspective, he chooses (now) to celebrate all that Kai's time on Earth brought him – the gifts and what to do with it all now that Kai is gone.
I face a similar choice - to be empowered, to take some semblance of control or to fester in the negativity and go away quietly.
I see this experience as a wake-up call – albeit rude. Apparently God has been trying to get my attention otherwise and I haven't been listening. So, he's had to resort to more extreme measures.
I prefer to look at it this way…it as if I have lived the first 42 years of my life and am now going into the locker room for halftime. "The Coach" is going to chew me out a bit and there is going to be a course adjustment, a change in game plan for the second half. I have been given special gifts that I have not applied to anywhere near maximum effect thus far. I believe that the Good Lord has shown His light on me throughout this ordeal. How can I respond by continuing to hide my own light under a basket? I see it as if I am coming back out onto the field for the next 42 (I hope) years w/a different strategy. It all came from Him to begin with - He's just asking me to give a little more back.
Saturday, November 22, 2008
Head Spinning, Body Waiting, Soul Embraced
Hi everyone. It's Franco.
Thank you all for the tremendous outpouring of prayers, love, good thoughts and offers of support. It is an amazing thing that in the midst of the most difficult time in our lives, we actually feel the most blessed. Those blessings flow mostly from all of you, truly serving as God's angels to us. We also feel very blessed by the excellent medical care that I have received, by the grace that allowed my cancer to be detected early, and by the terrific feedback that has led us to the best folks to care for me moving forward.
This past week was one of research that left our heads spinning. It seemed like we were bing-bing-binging from one doctor and course of action to the next. But, now - at the end of it - we feel like we've landed in a good place. We met with 3 of the 4 surgical oncologists that we had identified as candidates to do the pylorus-preserving Whipple procedure on me. All are very able and I am sure that any one of them would serve me very well.
We were thrown for a loop on Tuesday when we met w/a doc at Memorial Sloan Kettering. He offered me a clinical trial that involved an experimental chemo cocktail prior to surgery. While intriguing, it would have meant delaying my surgery for about 3 months. In the meantime, especially if the chemo were not very effective, my cancer could grow/spread and take me from a situation where I am operable (resectable) to where I am not any longer. Considering the risk vs benefits, participating didn't make sense for me. Because of the way the whole thing was presented by the MSK doc, I lost a bit of confidence in him precluding him from even doing the surgery on me aside from the clinical trial.
The whole family travelled down to Philly and on Thursday morning, we met w/Dr Yeo at Thomas Jefferson University. He is very well-known in the field, has performed the procedure some 900 times and has a center dedicated to pancreatic cancer research. He was
impressive. We signed on to do the procedure w/him on Friday, Dec 5th.
Then we rushed back up to New Brunswick for an afternoon appointment w/Dr. August of the Cancer Institute of NJ. I had met him on Nov. 14th while I was in Robert Wood Johnson University Hospital (RWJUH) recovering from my stent replacement. He met w/us for nearly an hour and once again impressed us w/his careful consideration and attention to my personal situation. I had already been tentatively scheduled to have him do the Whipple on me on Dec 1st.
The fourth surgical oncologist is Dr. John Chabot at New York Presbyterian. I cancelled my appointment w/him for the Wednesday before Thanksgiving. While he comes highly recommended, NY Presby is not on the list of 40 or so Nat'l Cancer Institute Cancer Care Centers - so even though he may be exceptional, the facility is not rated as highly as the other 3 under consideration. Besides, he's not covered by my insurance plan. So, he's out.
Basically, we are deciding between Dr. Yeo in Philly (on the 5th) and Dr. August in NJ (on the 1st). We are tending strongly towards Dr. August right now. His approach is much more about me, whereas Yeo has a set process that I would funnel through. Both are extremely talented and able. Outcomes for me are likely very similar w/each. My comfort level w/Dr August is higher. It feels a little weird to end up w/"the local guy" after searching so far and wide. But, as is so often true in life, just what you need can be found right under your nose. God provides us all that we need. The trick is in noticing.
So, we are "marinating" in the decision this weekend. But it looks like I'll be getting operated on at RWJUH on Monday, December 1st.
Like everything else related to this ordeal since it began about 1 month ago, it all seems very fast. Yet, I feel relieved to have made a decision (almost) and be going ahead w/the steps that will make me better. There's no reason for me to wait and plenty of reasons to act as soon as possible. I want this evil out of me!
I feel like my experience has been paralleling a larger narrative. In a nutshell - on Halloween I learned that I likely had cancer. As you can imagine, there were a few very sad & dark days that followed for us. By election day, I too had turned from a theme of fear to one of incredible hope. I am hoping to be well on the road to better things by Inauguration Day.
Here's to faith and hope!
Thank you all for the tremendous outpouring of prayers, love, good thoughts and offers of support. It is an amazing thing that in the midst of the most difficult time in our lives, we actually feel the most blessed. Those blessings flow mostly from all of you, truly serving as God's angels to us. We also feel very blessed by the excellent medical care that I have received, by the grace that allowed my cancer to be detected early, and by the terrific feedback that has led us to the best folks to care for me moving forward.
This past week was one of research that left our heads spinning. It seemed like we were bing-bing-binging from one doctor and course of action to the next. But, now - at the end of it - we feel like we've landed in a good place. We met with 3 of the 4 surgical oncologists that we had identified as candidates to do the pylorus-preserving Whipple procedure on me. All are very able and I am sure that any one of them would serve me very well.
We were thrown for a loop on Tuesday when we met w/a doc at Memorial Sloan Kettering. He offered me a clinical trial that involved an experimental chemo cocktail prior to surgery. While intriguing, it would have meant delaying my surgery for about 3 months. In the meantime, especially if the chemo were not very effective, my cancer could grow/spread and take me from a situation where I am operable (resectable) to where I am not any longer. Considering the risk vs benefits, participating didn't make sense for me. Because of the way the whole thing was presented by the MSK doc, I lost a bit of confidence in him precluding him from even doing the surgery on me aside from the clinical trial.
The whole family travelled down to Philly and on Thursday morning, we met w/Dr Yeo at Thomas Jefferson University. He is very well-known in the field, has performed the procedure some 900 times and has a center dedicated to pancreatic cancer research. He was
impressive. We signed on to do the procedure w/him on Friday, Dec 5th.
Then we rushed back up to New Brunswick for an afternoon appointment w/Dr. August of the Cancer Institute of NJ. I had met him on Nov. 14th while I was in Robert Wood Johnson University Hospital (RWJUH) recovering from my stent replacement. He met w/us for nearly an hour and once again impressed us w/his careful consideration and attention to my personal situation. I had already been tentatively scheduled to have him do the Whipple on me on Dec 1st.
The fourth surgical oncologist is Dr. John Chabot at New York Presbyterian. I cancelled my appointment w/him for the Wednesday before Thanksgiving. While he comes highly recommended, NY Presby is not on the list of 40 or so Nat'l Cancer Institute Cancer Care Centers - so even though he may be exceptional, the facility is not rated as highly as the other 3 under consideration. Besides, he's not covered by my insurance plan. So, he's out.
Basically, we are deciding between Dr. Yeo in Philly (on the 5th) and Dr. August in NJ (on the 1st). We are tending strongly towards Dr. August right now. His approach is much more about me, whereas Yeo has a set process that I would funnel through. Both are extremely talented and able. Outcomes for me are likely very similar w/each. My comfort level w/Dr August is higher. It feels a little weird to end up w/"the local guy" after searching so far and wide. But, as is so often true in life, just what you need can be found right under your nose. God provides us all that we need. The trick is in noticing.
So, we are "marinating" in the decision this weekend. But it looks like I'll be getting operated on at RWJUH on Monday, December 1st.
Like everything else related to this ordeal since it began about 1 month ago, it all seems very fast. Yet, I feel relieved to have made a decision (almost) and be going ahead w/the steps that will make me better. There's no reason for me to wait and plenty of reasons to act as soon as possible. I want this evil out of me!
I feel like my experience has been paralleling a larger narrative. In a nutshell - on Halloween I learned that I likely had cancer. As you can imagine, there were a few very sad & dark days that followed for us. By election day, I too had turned from a theme of fear to one of incredible hope. I am hoping to be well on the road to better things by Inauguration Day.
Here's to faith and hope!
Saturday, November 15, 2008
Life Changing Experience
Life is such a precious gift--and as much as you know this, you don't understand the real meaning of this gift until something happens that drastically affects its preciousness. As I begin this story about my love Franco, I can honestly say that things are still somewhat surreal. For as long as I've known Franco, he has always been somebody who cares for himself, others and this earth, as much as possible. He knows how blessed that he is and does all that he can to show appreciation for what he has been given in life. Therefore, you can't help but ask, why would something like this happen to Franco? I do believe that there is a reason--one that we will only figure out as we take this journey. What we've already learned in this short time is that we are not alone. God is with us. And so are an amazing group of family and friends. We deeply appreciate all the love, support, help and prayers that have already been shared. And we want to share back with all of you the details of our journey through this blog as a way of keeping you close.
As many of you know, Franco was training to run the NYC marathon on November 2, 2008--his 42nd birthday! About 2 weeks prior to the race, he started not feeling quite right. He was nauseous and tired, and noticed dark urine. He went to the doctor and they thought he had a combination of some kind of virus and rhabdomyolosis--a condition that sometimes affects marathon runners. Later that week, he realized that his eyes and skin were turning yellow. He was jaundiced. The results of an ultrasound and CT scan indicated a mass in the head of his pancreas, obstructing his common distal bile duct. This is what was causing the jaundice. On 10/31 he had a procedure called an ERCP where they sent a camera down, took biopsy samples and placed a stent in his bile duct to open the constriction caused by the mass. The stent was placed successfully, but the biopsies turned out to be inconclusive. What we learned is that biopsies can confirm the presence of cancer--but a negative (inconclusive) result can not confirm the absence of cancer. Since the mass was relatively small (approx 2 cm) and appeared to be localized (meaning it didn't seem like there was possible cancer elsewhere)--we were referred to a surgical oncologist. We learned that approx 90% of masses in the pancreas are malignant--so this was "cancer until proven otherwise". But since the doctor was directing us to a surgical oncologist for removal--this was excellent news. Because as we learned, most cases of pancreatic cancer do not present themselves until the cancer is at a late stage--and surgery is usually not an option then. And surgery is the only cure.
So as you might imagine--our search for information and doctors to fight this potential disease began. And we never could have imagined how expedited our search would become, with the help of so many people at Merck. Through friends, colleagues and Merck doctors that we don't even know--we received recommendations for hospitals and names of specific surgical oncologists. And in several cases, with the help of Merck doctors, we've gotten expedited appts. And several Merck doctors have also taken the time to talk to us about the disease and given us advice and direction. It's all so wonderfully unbelievable. We can not nearly express all the gratitude we feel for all of the Merck people that have helped us thus far.
In the mean time, Franco was scheduled for another ERCP on Monday, 11/17. They were again going to biopsy the mass to see if we could get a diagnosis. But things didn't go quite as planned. This past week Wednesday (11/12), Franco began suffering from severe abdominal pain. He went to the ER and through a series of tests, it was determined that the pain was likely due to the stent. So they moved up his ERCP to Thursday (11/13)--and confirmed that the stent was blocked and an infection was starting. That was the cause of his pain. They replaced the stent with a wider one, to avoid more blockage. And they also performed additional biopsies--and we have now learned that Franco does have pancreatic cancer. While we were expecting that this was the case, the reality of the situation is heavy. Fortunately, both by the hands of God and those of our family and friends--we are being held up high to fight this battle. Franco has been amazingly positive and I am in awe of his strength and will. I know, in particular, it's due to that which he loves most--his beautiful Ana and Noah. Together, the four of us make an excellent team and we will fight to win.
We had the fortune to meet with Dr. David August, the Head of Surgical Oncology from the Cancer Institute of NJ, while Franco was in the hospital (whom originally we couldn't even get an appt with until Dec 18)--which makes me believe that things really do happen for a reason. Additionally, we have an appt on Tuesday with Dr. Michael Jarnagin (Vice Chair, Surgical Services, Dept of Surgery; Chief of Hepatopancreatobiliary Services at Memorial Sloan-Kettering) and on Thursday with Dr. Charles Yeo (Samuel D. Gross Professor and Chair of Surgery at Thomas Jefferson University's Jefferson Medical College in PA). Please keep us in your thoughts and prayers as we go through the decision making process for selecting the surgical oncologist to do this very complex surgery.
We will continue to keep you all posted. Thanks for all the positive thoughts, prayers and kindness. It makes an unbelievable difference in our lives.
With much love and gratitude,
Jacquelyn
As many of you know, Franco was training to run the NYC marathon on November 2, 2008--his 42nd birthday! About 2 weeks prior to the race, he started not feeling quite right. He was nauseous and tired, and noticed dark urine. He went to the doctor and they thought he had a combination of some kind of virus and rhabdomyolosis--a condition that sometimes affects marathon runners. Later that week, he realized that his eyes and skin were turning yellow. He was jaundiced. The results of an ultrasound and CT scan indicated a mass in the head of his pancreas, obstructing his common distal bile duct. This is what was causing the jaundice. On 10/31 he had a procedure called an ERCP where they sent a camera down, took biopsy samples and placed a stent in his bile duct to open the constriction caused by the mass. The stent was placed successfully, but the biopsies turned out to be inconclusive. What we learned is that biopsies can confirm the presence of cancer--but a negative (inconclusive) result can not confirm the absence of cancer. Since the mass was relatively small (approx 2 cm) and appeared to be localized (meaning it didn't seem like there was possible cancer elsewhere)--we were referred to a surgical oncologist. We learned that approx 90% of masses in the pancreas are malignant--so this was "cancer until proven otherwise". But since the doctor was directing us to a surgical oncologist for removal--this was excellent news. Because as we learned, most cases of pancreatic cancer do not present themselves until the cancer is at a late stage--and surgery is usually not an option then. And surgery is the only cure.
So as you might imagine--our search for information and doctors to fight this potential disease began. And we never could have imagined how expedited our search would become, with the help of so many people at Merck. Through friends, colleagues and Merck doctors that we don't even know--we received recommendations for hospitals and names of specific surgical oncologists. And in several cases, with the help of Merck doctors, we've gotten expedited appts. And several Merck doctors have also taken the time to talk to us about the disease and given us advice and direction. It's all so wonderfully unbelievable. We can not nearly express all the gratitude we feel for all of the Merck people that have helped us thus far.
In the mean time, Franco was scheduled for another ERCP on Monday, 11/17. They were again going to biopsy the mass to see if we could get a diagnosis. But things didn't go quite as planned. This past week Wednesday (11/12), Franco began suffering from severe abdominal pain. He went to the ER and through a series of tests, it was determined that the pain was likely due to the stent. So they moved up his ERCP to Thursday (11/13)--and confirmed that the stent was blocked and an infection was starting. That was the cause of his pain. They replaced the stent with a wider one, to avoid more blockage. And they also performed additional biopsies--and we have now learned that Franco does have pancreatic cancer. While we were expecting that this was the case, the reality of the situation is heavy. Fortunately, both by the hands of God and those of our family and friends--we are being held up high to fight this battle. Franco has been amazingly positive and I am in awe of his strength and will. I know, in particular, it's due to that which he loves most--his beautiful Ana and Noah. Together, the four of us make an excellent team and we will fight to win.
We had the fortune to meet with Dr. David August, the Head of Surgical Oncology from the Cancer Institute of NJ, while Franco was in the hospital (whom originally we couldn't even get an appt with until Dec 18)--which makes me believe that things really do happen for a reason. Additionally, we have an appt on Tuesday with Dr. Michael Jarnagin (Vice Chair, Surgical Services, Dept of Surgery; Chief of Hepatopancreatobiliary Services at Memorial Sloan-Kettering) and on Thursday with Dr. Charles Yeo (Samuel D. Gross Professor and Chair of Surgery at Thomas Jefferson University's Jefferson Medical College in PA). Please keep us in your thoughts and prayers as we go through the decision making process for selecting the surgical oncologist to do this very complex surgery.
We will continue to keep you all posted. Thanks for all the positive thoughts, prayers and kindness. It makes an unbelievable difference in our lives.
With much love and gratitude,
Jacquelyn
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