11.29

11.29.2011

We thought yesterday would be an eventful day, but we didn’t think it would be a long one… We were up @ 5am and didn’t get home until 8:45pm. While it was a long day for us it was just as long for Bradley (The Black Lab) who “held-it” all that time!!! Fantastic! The best part of the day was realizing he has a strong bladder J. He has earned the title of “Camel” God Bless Labs!

So after much anticipation I met with my Dr., Eileen O’Reilly along with the team, thankfully they were even more of what I wanted than I had hoped. I can truly say that everyone I come in contact with at Sloan is quite strong, pleasant, and smart, I have not hit a “bad attitude” yet.

The bottom line with Dr O’Reilly was that

1)   They still cannot identify the Tumor as Cancer (but it is). They did many tests yesterday to get a positive id; Blood tests, Cat Scans, (Regular and the ones with the contrast dye that makes u warm) Cat scans on Pancreas, Abdomen, Chest, etc. Then they did Echo grams on my heart, my throat, and the center of my chest. The Scans make me quite anxious- but I did a great job of “envisioning” I envisioned the people I love and somehow the Lab Bradley popped up too! The Echo thing sucked! The room was freezing, it took for ever etc….

2)   Her team will meet on Thursday and review the results, if they cannot get the proof to diagnose the Cancer, they will quickly do another “Scope” on me (yuk)

3)   They then proceeded to prepare me for a treatment plan – I will begin Chemotherapy shortly. They will install a Port under my skin and over my muscle in my chest. The Drugs will be administered through this port. I will get a cocktail of medications that are quite strong. They feel I can take the strong version, and it will be much more effective at fighting the cancer. This is why they scan my heart etc.  I would go to the Center on E53rd Street 2x every other week. Once for the dosage, then I leave with a portable bag of medicine that keeps feeding over the two days, then I go back to the Center and they take the feeder off me. I am trying to prepare my mind for all of this, I am not fully prepared as it is all new, and scary, BUT I WILL BE THERE AND READY WHEN THE TIME COMES! (although that’s hard to imagine right now L)

For the last 2 days I have felt much better, I think the replacement of the smaller stent with the larger stent last Monday has made a huge difference (huge) What a relief this is, the first time I have been not completely nauseous in 6 weeks. It is WONDERFUL. I do have some pain in my abdomen, back, and chest still- however I am getting new meds from Dr Reilly to help with those ailments.

I managed to visit Gary Debenedetto this week in Port Jeff – The Chiropractor. My friend Joe spent most of the day Monday chauffeuring me around Long Island to various appointments. I have admiration for Gary, he is a strong guy with great spirituality, and I have known him for at least 15 years, sold him many cars and been a patient etc. So I gave him my news and he pulled right up and sat and talked for just under 2 hours, he was amazing, so supportive so caring. His main message and advice was to follow my “innate knowledge” the things I know will make me strong, the people I need to rely on, the environment I need to be in etc. He gave me lots of nutrition tips, which were a bit obvious, simple as drinking large amounts of water. But I find I need to hear things more than once for them to truly impact me. Gary was so glad I choose Sloan Kettering. I left Gary’s Office feeling stronger and happier than I have since the start of this challenge. I even was singing to my IPOD that night J!

 ********** 11.30******  Update on treatment.

I just received an “UpDate” on my Sloan Kettering patient website- They made an appointment for me with a nutritionist on 12/6 but also a follow up on 12/13 with Dr O’Reilly AND a date at the Treatment suite 2 hours after the Dr appt. . I feel confident that will be the minor surgery appointment installing the Port and then the treatment center will be the first Chemo treatment- I will keep you posted, and should know for sure on Thursday night.

Love John - Pic from Diner on 53rd St on Tuesday Eve

Meeting w/ Dr O'Reilly

11.29.2011

We thought yesterday would be an eventful day, but we didn’t think it would be a long one… We were up @ 5am and didn’t get home until 8:45pm. While it was a long day for us it was just as long for Bradley (The Black Lab) who “held-it” all that time!!! Fantastic! The best part of the day was realizing he has a strong bladder J. He has earned the title of “Camel” God Bless Labs!

So after much anticipation I met with my Dr., Eileen O’Reilly along with the team, thankfully they were even more of what I wanted than I had hoped. I can truly say that everyone I come in contact with at Sloan is quite strong, pleasant, and smart, I have not hit a “bad attitude” yet.

The bottom line with Dr O’Reilly was that

1)   They still cannot identify the Tumor as Cancer (but it is). They did many tests yesterday to get a positive id; Blood tests, Cat Scans, (Regular and the ones with the contrast dye that makes u warm) Cat scans on Pancreas, Abdomen, Chest, etc. Then they did Echo grams on my heart, my throat, and the center of my chest. The Scans make me quite anxious- but I did a great job of “envisioning” I envisioned the people I love and somehow the Lab Bradley popped up too! The Echo thing sucked! The room was freezing, it took for ever etc….

2)   Her team will meet on Thursday and review the results, if they cannot get the proof to diagnose the Cancer, they will quickly do another “Scope” on me (yuk)

3)   They then proceeded to prepare me for a treatment plan – I will begin Chemotherapy shortly. They will install a Port under my skin and over my muscle in my chest. The Drugs will be administered through this port. I will get a cocktail of medications that are quite strong. They feel I can take the strong version, and it will be much more effective at fighting the cancer. This is why they scan my heart etc.  I would go to the Center on E53rd Street 2x every other week. Once for the dosage, then I leave with a portable bag of medicine that keeps feeding over the two days, then I go back to the Center and they take the feeder off me. I am trying to prepare my mind for all of this, I am not fully prepared as it is all new, and scary, BUT I WILL BE THERE AND READY WHEN THE TIME COMES! (although that’s hard to imagine right now L)

For the last 2 days I have felt much better, I think the replacement of the smaller stent with the larger stent last Monday has made a huge difference (huge) What a relief this is, the first time I have been not completely nauseous in 6 weeks. It is WONDERFUL. I do have some pain in my abdomen, back, and chest still- however I am getting new meds from Dr Reilly to help with those ailments.

I managed to visit Gary Debenedetto this week in Port Jeff – The Chiropractor. My friend Joe spent most of the day Monday chauffeuring me around Long Island to various appointments. I have admiration for Gary, he is a strong guy with great spirituality, and I have known him for at least 15 years, sold him many cars and been a patient etc. So I gave him my news and he pulled right up and sat and talked for just under 2 hours, he was amazing, so supportive so caring. His main message and advice was to follow my “innate knowledge” the things I know will make me strong, the people I need to rely on, the environment I need to be in etc. He gave me lots of nutrition tips, which were a bit obvious, simple as drinking large amounts of water. But I find I need to hear things more than once for them to truly impact me. Gary was so glad I choose Sloan Kettering. I left Gary’s Office feeling stronger and happier than I have since the start of this challenge. I even was singing to my IPOD that night J!

 ********** 11.30******  Update on treatment.

I just received an “UpDate” on my Sloan Kettering patient website- They made an appointment for me with a nutritionist on 12/6 but also a follow up on 12/13 with Dr O’Reilly AND a date at the Treatment suite 2 hours after the Dr appt. . I feel confident that will be the minor surgery appointment installing the Port and then the treatment center will be the first Chemo treatment- I will keep you posted, and should know for sure on Thursday night.

Love John

5am Monday 11.29 on the way

up & showered, heading to meet Dr OReilly- Pete's my wing man & Janet is meeing me @ Sloan on 53rd Street. I think 'i'm ready, if Bradley the Lab will let me go....he's ALL Over me!! :))

On a bright note: my health insurance was renewed for 2012!!! YaY!

Residence A

Residence A

Traveled on Monday to NYC with Wayne, we got in with a little time to kill so enjoyed walking around the neighborhood Sloan on York Ave is in. I like going there because everything is Medically and Education related in the neighborhood- It feels like you are in the right place

We checked in for the procedure and went to the blood "lounge" omg there had to be 100 people waiting there, but we were quickly in and out and sent up to the 4th floor to my little room. There I was beat up by a Jamaican Nurse...oh my she was tough- But she was serious and thorough. Then the Anesthesiologist checked in and then Dr Shattner came buy to check on me and chat, he was a very nice guy. After a short time we were taken by a very lovely and beautiful Nurse to the Operating room.

The operating room was amazing like from the future with flat screens surrounding the table, and great music playing, Dr Shattner then said, he was sorry but just thought that he should take out the original stent from a few weeks backs because they often commonly clog and can cause an infection to develop. He said that Dr O'Reilly would want him to replace it soon any way. So I agreed that replacing it was the right thing to do and he felt that way too. He considered the Large Stent "Permanent" as it last like 9 months....... :) The thinking is I have operation before the 9 months and therefore don't require the stent after "whipple" The large stent is steel and 3x larger than the original plastic one. (I had the bargain brand!)

The entire procedure from Operating room to recovery was 2 hours or so. It took me a bit of a time to get coherent and dressed afterwards and we started on the journey home, I think Wayne got more than he bargained for as we made several unplanned stops along the Grand Central Parkway to address my Nausea!, There was quite a bit of traffic on the way home but the car was comfortable......

I got home and had a lousy night of nausea and exhaustion, Tuesday was also a rough day, Sloan called to check up on me, i was "sick" for most the day, and felt like i was "beat Up" Mugged on the street and punched in the ribs, chest, back and abdomen. This morning I had a bit of relief, eating very lightly. I went for a walk with Jeanne and Bradley downtown Northport and got some good fresh air and picked up the mail. I am trying to get the anesthesia cleared out of my system

Upon returning home I got a call from Dr Shattner with the results of the Biopsy- He is a pleasure to deal with. He reported to me that the official results of the Biopsy are "Suspect Agno Carcinoma" which means "Suspicious for Cancer" however before we all imagine i'm cancer free realize that Dr Jarnigan/O'Reilly & Shattner- the Team all believe 100% this is clearly a  cancer, he said they deal with this often, and it is sort of a "road block" for me. They may want another Cat Scan to see if tumor moved or changed. He said he wanted to prepare me for this challenge. The Next step will be taken by Eileen O Reilly who will decide the plan , I am meeting with her on Tuesday at the Cancer Center on 53rd st.

So thats where we are, on a bright note he said I should feel MUCH better by Friday.......if not call him lol

Overall I think I am in good hands at every turn of this challenge and it will keep me strong, especially in good hands with all of you!

MUAH

-J

Good Evening-

Just wanted to give u an update - I am scheduled for the procedure finally, it is now confirmed for Monday @ 10:30a at Sloan Kettering on York Avenue & 67th Street. This is the Hospital Location, I was there b4. It's an in & out thing, I get there and have some tests/blood work then the procedure. They do put me to sleep, so i recuperate on site then come home at the end of the day. It should be fine. This is the scope that will allow the Dr's to properly analyze the tumor and create the treatment plan for me. Apparently they also are able to get a good "close up" look at the situation!

The tough part is that I can't eat before the operation LOL

Things are going ok, the horrible sick feeling I had keeps receding each day, I would have to say that it's almost gone. It leaves me with my other symptoms which is nausea and pains in chest area. I have a good medication for the Nausea. I have a lot of fatigue but I am staying awake all day pretty much everyday. I am experiencing some pretty quick weight loss, which does make me upset. I look forward to working with a nutritionist on that issue. I am also looking forward to going back to a gym and getting more exercise, I do make sure i walk each day, but I want some resistance training in addition to the cardio. Keep my muscle tone.

I don't have a gym membership now but Mary directed me to the Lance Armstrong "livestrong.com" site. It seems they have a program with the YMCA where Cancer folks can have a membership and also some Trainer/Physical therapist free or for a very small fee- there is a beautiful Y in Huntington, i am hoping they participate!

Although i am doing a pretty fair job of coping with my diagnosis, It was clear that I will need a therapist, I was concerned about the expenses of what could probably be weekly visits at least initially since My Health Insurance does not cover Mental Health Doctors :(.   We were referred to cancercare.org and through a program funded by the United way they provide therapy to cancer patients totally cost-free. The Therapists are all Oncology specialists and they have an office on Long Island in Woodbury! So this is the best News of the day!! They are contacting me on Monday.

So the beat goes on, all's good! Thanks everyone for all your help love & support!


Love - J

ps: Heres a photo of my copilot in the car today, he got the last of his "puppy-shots" at the vet.



John Rampone
johnramp@comcast.net

My Thanksgiving Procedure

Traveled on Monday to NYC with Wayne, we got in with a little time to kill so enjoyed walking around the neighborhood Sloan on York Ave is in. I like going there because everything is Medically and Education related in the neighborhood- It feels like you are in the right place

We checked in for the procedure and went to the blood "lounge" omg there had to be 100 people waiting there, but we were quickly in and out and sent up to the 4th floor to my little room. There I was beat up by a Jamaican Nurse...oh my she was tough- But she was serious and thorough. Then the Anesthesiologist checked in and then Dr Shattner came buy to check on me and chat, he was a very nice guy. After a short time we were taken by a very lovely and beautiful Nurse to the Operating room.

The operating room was amazing like from the future with flat screens surrounding the table, and great music playing, Dr Shattner then said, he was sorry but just thought that he should take out the original stent from a few weeks backs because they often commonly clog and can cause an infection to develop. He said that Dr O'Reilly would want him to replace it soon any way. So I agreed that replacing it was the right thing to do and he felt that way too. He considered the Large Stent "Permanent" as it last like 9 months....... :) The thinking is I have operation before the 9 months and therefore don't require the stent after "whipple" The large stent is steel and 3x larger than the original plastic one. (I had the bargain brand!)

The entire procedure from Operating room to recovery was 2 hours or so. It took me a bit of a time to get coherent and dressed afterwards and we started on the journey home, I think Wayne got more than he bargained for as we made several unplanned stops along the Grand Central Parkway to address my Nausea!, There was quite a bit of traffic on the way home but the car was comfortable......

I got home and had a lousy night of nausea and exhaustion, Tuesday was also a rough day, Sloan called to check up on me, i was "sick" for most the day, and felt like i was "beat Up" Mugged on the street and punched in the ribs, chest, back and abdomen. This morning I had a bit of relief, eating very lightly. I went for a walk with Jeanne and Bradley downtown Northport and got some good fresh air and picked up the mail. I am trying to get the anesthesia cleared out of my system

Upon returning home I got a call from Dr Shattner with the results of the Biopsy- He is a pleasure to deal with. He reported to me that the official results of the Biopsy are "Suspect Agno Carcinoma" which means "Suspicious for Cancer" however before we all imagine i'm cancer free realize that Dr Jarnigan/O'Reilly & Shattner- the Team all believe 100% this is clearly a  cancer, he said they deal with this often, and it is sort of a "road block" for me. They may want another Cat Scan to see if tumor moved or changed. He said he wanted to prepare me for this challenge. The Next step will be taken by Eileen O Reilly who will decide the plan , I am meeting with her on Tuesday at the Cancer Center on 53rd st.

So thats where we are, on a bright note he said I should feel MUCH better by Friday.......if not call him lol

Overall I think I am in good hands at every turn of this challenge and it will keep me strong, especially in good hands with all of you!

MUAH

-J

My Helpers

I owe so much to sister Janet and my friend Joe Bijari. They chauffeured me around this past week and allowed me to go to visits from the Cardiologist, Psychiatrists, Massage Therapist, Drug Store etc etc. Each day they also managed to take time to go for a walk with me, I'm trying to be certain I get some exercise in each day. On Wednesday Joe took me to the Ward Melville Park in Setauket, it was a beautiful day and he took this pic of me. I'm going to try and document things so I will include some pics. I'm concerned about dropping weight, but I guess I have nice cushion to protect me from getting too slim! LOL

Finally Action Starts.......uh oh!

Finally! Just got word that the little operation. I think its an ERCP? will occur next Monday! This is good news as the ball get rolling, it also sets up my appointment with Dr O'Reilly on the 29th. This makes me happy, because she is my Dr of choice! Yay!