At this point I've had all the chemotherapy, radiation and surgery my body will handle. We've tried every chemotherapy and procedure, leaving no rock unturned. The procedure aimed at reducing the bleeding in my belly was successful but short lived; however, the filter to prevent clots from traveling to my lungs works perfectly but does very little to my overall condition.
I've been sustained by blood and platelet infusions; however, each infusion buys me less and less time. We've switched to a purely palliative treatment plan and eliminated all non-essential medicines, transfusions, blood tests and scans. My oncology team sat my family down and described my prognosis in terms of days.
It's the worst thing one could expect to hear about themselves, not to mention a wife about their husband, a father and mother about their son, etc.
I have elected to spend my final days at MGH, close to my doctors who have treated me so well throughout this terrible disease. I always knew this day would one day come, just never knew when or how fast. But I've been prepared.
For some time I've come to terms with my illness and what it would one day bring. There's a certain amount of pride and dignity I carry with no regrets: I grew up in supportive family that never struggled with wants or needs; I was given and took advantage of every educational obstacle I could handle; I successfully launched myself into a great career; and I found my beautiful soulmate and angel to be my wife and start a family and life.
Autumn and I are at the top of our game: beautiful family (especially Benson who has become somewhat of a local celebrity); supportive parents, siblings, aunts and uncles; promising career paths; and financially stable without wants or needs. It all makes me so happy. I couldn't ask for more. I couldn't be more proud.
And so there you have it! Ever since I started straight catheterizing myself I switched to big boy pull up underwear (really just for cleanup and sanitation reasons); however today I was down-classed to traditional diapers so I didn't want to sit on this blog posting too long. People have been pouring in with visits and calls, which are all encouraged, no need to ask, even just for a handshake or a snug hug.
I'm not sure if this is my last posting but if it is I want to thank everyone who has helped me along the way, everyone who has become inspired to make a difference, and everyone who has changed their own lives to better take advantage of life's little opportunities and tiny miracles. It's not a goodbye but more of a see you later. It's truly been an honor and a privilege.
I just ask in return that everyone keeps on fighting to find a cure. Continue fundraising and continue to "breathe in hope, breathe out love."
Saturday, June 4, 2011
Thursday, June 2, 2011
Downhill Slide
Yesterday was a tough day. We began packing for our much anticipated trip to San Diego. Jeff woke up exhausted and spent most of the morning taking it easy downstairs. In the afternoon he mustered up enough energy to attempt to climb our steep spiral staircase.
The rest of the afternoon and most of the night was nothing less than a nightmare. Jeff passed out on the stairs, we called 911, he was brought to the MGH ER after he was found to have a very low blood pressure. Results of his blood tests confirmed he had a very low platelet count and a very low red blood cell count concerning for an active bleed.
He underwent a CT scan which confirmed Jeff was bleeding into his belly. They gave him blood, platelets, more blood and called in the General surgery team and the Interventional radiology team.
They explained to us that one of the arteries in the liver was bleeding because of an enlarging tumor and he also had two small clots in his lungs which made his oxygen level low.
They immediately took Jeff to the radiology suite where they evaluated the bleeding in his liver and were able to cut off the arterial blood supply to the portion of his liver that was bleeding. They also placed a filter or what looks like a small metal umbrella in the inferior vena cava (the large vein in his body) to prevent a large clot from traveling to his lungs.
Jeff was given 5 units of red blood cells so far and platelets and will likely need more. They are keeping a very close watch on him.
We have placed our California trip on hold for now and I will keep you all updated.
Autumn
The rest of the afternoon and most of the night was nothing less than a nightmare. Jeff passed out on the stairs, we called 911, he was brought to the MGH ER after he was found to have a very low blood pressure. Results of his blood tests confirmed he had a very low platelet count and a very low red blood cell count concerning for an active bleed.
He underwent a CT scan which confirmed Jeff was bleeding into his belly. They gave him blood, platelets, more blood and called in the General surgery team and the Interventional radiology team.
They explained to us that one of the arteries in the liver was bleeding because of an enlarging tumor and he also had two small clots in his lungs which made his oxygen level low.
They immediately took Jeff to the radiology suite where they evaluated the bleeding in his liver and were able to cut off the arterial blood supply to the portion of his liver that was bleeding. They also placed a filter or what looks like a small metal umbrella in the inferior vena cava (the large vein in his body) to prevent a large clot from traveling to his lungs.
Jeff was given 5 units of red blood cells so far and platelets and will likely need more. They are keeping a very close watch on him.
We have placed our California trip on hold for now and I will keep you all updated.
Autumn
Wednesday, May 25, 2011
Recovery, Moving Forward, Tentative Plans
Recovery seems to come naturally for me. Today is about six days after surgery and I feel okay as far as surgical pains are concerned. I still have the same abdominal bloating, numbness below my sternum and sciatica-like pains. Additionally bowel and bladder control has now almost all been lost and I've been spending a lot time between bed and bath; however, my surgery seemed to go well.
I still have this cancer eating through my body but hopefully the surgery has prevented impending paralysis that was slowly creeping up my back. The incontinence issue has been annoying to say the least, requiring me to self catheterize myself every 8 hours to relieve my bladder and playing this weird guessing game regarding my bowels. I'm not really sure what to think or feel anymore, and it's not like I have much feeling anyway.
Over the past couple of days we have had nice meetings with the entire, multifaceted oncology team and everyone has come to the consensus of prolonging the quality of my life instead of introducing more harm to finding a cure. The prognosis of my disease has been described in weeks to months, which doesn't really mean anything other than I don't have the luxury of years and decades.
The idea of not fighting and completely suspending treatments doesn't really jive with my goals and we have decided to switch to one last oral chemotherapy regimen. This particular drug is called Pazopanib. Unlike traditional chemotherapies, this drug does not kill cells unbiased but targets tumor pathways to control the disease. It's a Hail-Mary approach with little stats to rationalize; however the side effects are minimal and the treatment allows me to be "unteathered" to the hospital. It was described to us as an "aspirin" that'll either work and make me feel great or not work and we'll discontinue.
As a result my family is planning a fun trip to be together and enjoy these remaining days. The tentative plan is an RV trip up the coast of California from San Diego to San Francisco and then flying to Dallas and spending some time there.
I still have this cancer eating through my body but hopefully the surgery has prevented impending paralysis that was slowly creeping up my back. The incontinence issue has been annoying to say the least, requiring me to self catheterize myself every 8 hours to relieve my bladder and playing this weird guessing game regarding my bowels. I'm not really sure what to think or feel anymore, and it's not like I have much feeling anyway.
Over the past couple of days we have had nice meetings with the entire, multifaceted oncology team and everyone has come to the consensus of prolonging the quality of my life instead of introducing more harm to finding a cure. The prognosis of my disease has been described in weeks to months, which doesn't really mean anything other than I don't have the luxury of years and decades.
The idea of not fighting and completely suspending treatments doesn't really jive with my goals and we have decided to switch to one last oral chemotherapy regimen. This particular drug is called Pazopanib. Unlike traditional chemotherapies, this drug does not kill cells unbiased but targets tumor pathways to control the disease. It's a Hail-Mary approach with little stats to rationalize; however the side effects are minimal and the treatment allows me to be "unteathered" to the hospital. It was described to us as an "aspirin" that'll either work and make me feel great or not work and we'll discontinue.
As a result my family is planning a fun trip to be together and enjoy these remaining days. The tentative plan is an RV trip up the coast of California from San Diego to San Francisco and then flying to Dallas and spending some time there.
Saturday, May 21, 2011
Leading Up to the Spine Surgery #2
Thank you for all the well wishes and recent support. Like any other episode I've experienced with this disease, I have entered the hospital with one set of complaints and then been admitted to the hospital for a completely different set of symptoms I hardly knew about.
Last Thursday we entered the hospital complaining about bloating in the abdomen, an increasing numbness from my sternum down to my toes and a sciatica-like pain radiating down the backside of both my legs. Additionally Thursday was a planned day to recheck blood work to continue the oral Temodar chemotherapy... So things sort of worked out time wise.
At Thursday's appointment we decided a CT Scan of the abdomen / pelvis would be prudent to evaluate these new bloating symptoms, numbness and sciatica pains. Immediately following the CT Scan I was consented for spinal surgery T4-T7.
To bring this back to a laymen's perspective brought lots of shock and confusion. I was complaining of stomach / buttocks pains and was persuaded to have surgery in my upper back (between my shoulder blades). The final CT Scan reading not only confirm my being FOS (full of s#*t) which we already knew :), but it also showed tumor progression throughout my abdomen, peritoneum, etc. Surgery was not an option but a necessity to preserve motor function of my legs and bowel control.
I was given 20 minutes to consult with my family while they prepped the OR and rolled me upstairs.
Last Thursday we entered the hospital complaining about bloating in the abdomen, an increasing numbness from my sternum down to my toes and a sciatica-like pain radiating down the backside of both my legs. Additionally Thursday was a planned day to recheck blood work to continue the oral Temodar chemotherapy... So things sort of worked out time wise.
At Thursday's appointment we decided a CT Scan of the abdomen / pelvis would be prudent to evaluate these new bloating symptoms, numbness and sciatica pains. Immediately following the CT Scan I was consented for spinal surgery T4-T7.
To bring this back to a laymen's perspective brought lots of shock and confusion. I was complaining of stomach / buttocks pains and was persuaded to have surgery in my upper back (between my shoulder blades). The final CT Scan reading not only confirm my being FOS (full of s#*t) which we already knew :), but it also showed tumor progression throughout my abdomen, peritoneum, etc. Surgery was not an option but a necessity to preserve motor function of my legs and bowel control.
I was given 20 minutes to consult with my family while they prepped the OR and rolled me upstairs.
Thursday, May 19, 2011
MORE NEWS
11:30 PM THURSDAY MAY 19TH, 2011
Jeff is out of the operating room after a 2 1/2 hour spine surgery. He will remain in the ICU overnight where they will monitor his blood counts. He was in a considerable amount of pain after the surgery but they are working on getting the right cocktail to keep him comfortable. After they woke him up he managed to tell his spine surgeon that he "looked dapper!" which got a smile and chuckle from his team of doctors. Throughout this terrible fight against the BIG "S" (Sarcoma) Jeff has still managed to keep his amazing sense of humor. We hope he will be stable for transfer to his usual room with a view on the 21st floor tomorrow. Thanks for all of the emails, texts, love and support.
3:30 PM THURSDAY MAY 19TH, 2011
Just a quick update for all of you...Jeff is headed to the operating room in the next few minutes (It's now 3:30PM) for emergency spine surgery as he has developed thoracic spinal cord compression due to the growing tumors. I will keep you all updated.
Autumn
Jeff is out of the operating room after a 2 1/2 hour spine surgery. He will remain in the ICU overnight where they will monitor his blood counts. He was in a considerable amount of pain after the surgery but they are working on getting the right cocktail to keep him comfortable. After they woke him up he managed to tell his spine surgeon that he "looked dapper!" which got a smile and chuckle from his team of doctors. Throughout this terrible fight against the BIG "S" (Sarcoma) Jeff has still managed to keep his amazing sense of humor. We hope he will be stable for transfer to his usual room with a view on the 21st floor tomorrow. Thanks for all of the emails, texts, love and support.
Autumn
3:30 PM THURSDAY MAY 19TH, 2011
Just a quick update for all of you...Jeff is headed to the operating room in the next few minutes (It's now 3:30PM) for emergency spine surgery as he has developed thoracic spinal cord compression due to the growing tumors. I will keep you all updated.
Autumn
Wednesday, May 18, 2011
A New Week, A New Treatment Plan
Starting about mid week last week I started complaining about a sciatica nerve pain shooting down the back of my right leg. This was actually one of the initial pains that originally allowed me to identify my cancer one year ago.
Mass General Hospital is a well oiled ship and I cannot speak highly enough for the care I receive there. Monday, after routine blood work for my Temodar treatment, my doctor scheduled me for a Lumbar / Sacral MRI. Tuesday morning my radiation oncologist called me into his office for radiation planning and later on the same afternoon I received my first treatment, radiating lesions in my Sacral spine responsible for this new sciatica pain. Today I received my second treatment and I should be finished by Saturday.
So it begins again! A new week, more radiation and hopefully some relief soon. We've been doing a better job managing my pain medicines and keeping me out of the hospital which is good, but it's been tough. I'm still very numb, moving around is getting increasingly difficult. My stomach is extremely bloated and, generally though I'm not in any pain, I am very uncomfortable.
Mass General Hospital is a well oiled ship and I cannot speak highly enough for the care I receive there. Monday, after routine blood work for my Temodar treatment, my doctor scheduled me for a Lumbar / Sacral MRI. Tuesday morning my radiation oncologist called me into his office for radiation planning and later on the same afternoon I received my first treatment, radiating lesions in my Sacral spine responsible for this new sciatica pain. Today I received my second treatment and I should be finished by Saturday.
So it begins again! A new week, more radiation and hopefully some relief soon. We've been doing a better job managing my pain medicines and keeping me out of the hospital which is good, but it's been tough. I'm still very numb, moving around is getting increasingly difficult. My stomach is extremely bloated and, generally though I'm not in any pain, I am very uncomfortable.
Sunday, May 15, 2011
Provincetown, Getting out of Dodge
Immediately following my final radiation treatment on Friday we packed up the car and headed to the Cape for a weekend of fun and relaxation, away from doctors, treatments, couches, etc. We landed at Provincetown, the furthest point along the Cape and stayed at a cute little bed and breakfast called the Prince Albert Inn. Autumn and I chuckled at the name and we were later consumed by the massive amounts of man art decorating the venue. My mom who had made the reservations had no clue what she was getting us into; however, in all seriousness, the B&B was very cute and I would definitely recommend / return there again.
It was great to get out of dodge and experience the Cape. We really liked walking around Provincetown, exploring the little town shops, galleries and restaurants. The beaches in and around Provincetown rated among the best Autumn and I have seen since we've been on the East Coast. Though half my time was spent being pushed in a wheelchair, you cannot complain of fresh air and intermittent walks aided by a cane along sandy beaches.
The weather held out for us and really made for a magical weekend. This past month has been full of daily aches and pains, trials and tribulations. I've been ignoring my email / voicemail / blog and I do apologize. Some symptoms have quickly subsided while others have lingered for weeks. I've been ready to throw in the towel on several occasions and been quickly pulled back in by my support team. We live one day at a time, "Breathing in Hope and Breathing out Love," which each breath.
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