New Years Eve Update & Chemo #1

Well its 5am on New Years Eve and I'm reporting in on my latest turn of events, yesterday I went for a Visit with Dr. O'Reilly, It seems that all the latest reports & results were pretty much status quo, thats good news! That being said I started my Chemo therapy regimen.

Mary met me in the city, it was a beautiful and unseasonably warm day, it seems that there are no restrictions on your diet before you go through the treatments, so we enjoyed a delicious lunch at a cafe near Sloan. Its amazing how you can always find a great selection of delicious food, close by in the city.

When we got into our appointment all went smooth, the checkin lady was sweet and comforting as they all are, she informed me I would be going for bloods first, then the Doc, then the therapy, AND.......... would I like to use my new "Port" for all the blood work...... I almost fainted because i was so anxious about the whole port thing, which has freaked me out since the beginning! I explained to her my anxiety and she tried to calm me down. She said they will be out for me shortly! I turned and found a nice place to relax with Mary in the lounge, I quickly popped a Sedative and prayed it would work quickly.

We were called quite promptly :(. A very Large Indian Man in a white lab coat called my name with a heavy accent. All I could think was that "This guy doesn't  look especially gentle" but upon arriving in the test area i was assigned to a petite young lady who took my vitals etc. Good news was that my weight stayed pretty steady at 226, this was after the horrible week of tests and pancreatitis where I lived on Ice Chips & morphine. (And threw up like crazy). But as I dealt with her I did not have confidence in her being the one to Christen my port - too "young" and "happy" I informed her of my "Virgin Port" status and she said "Oh I don't do that" 

We were then introduced to "James" who was like an Angel to me, he was a youngish traveling Oncological Nurse, he was from North Carolina, He told us how much he enjoyed working at Sloan and it was his dream to work at such a place. His contract was up in April and he was hoping to get a renewal because he didn't want to leave New York.

As he prepared my port he joked about me getting it on my birthday, he then explained that he had had a port! And that he was 7 Years Cancel-Free survivor. He did his treatment at Wake Forest, NC. He made me comfortable and handled all the tapping and drawing without me even flinching! He was truly a gift at that moment! :)

Meeting with Doctor was good, no bad news, she said she was very optimistic! we reviewed my med's, and all the side effect issues that could arise.  

She pushed my Chemo Schedule up and changed them to Tuesdays- Thursdays as originally scheduled, before hospitalization. She was concerned I was over the Pancreatitis. She said she felt I could be looking at Chemo for the next 6 weeks winding up in mid February and then having the Whipple Surgery with Dr Jarnovic in Mid March. Assuming everything goes along as hoped. So this could be a schedule subject to change.

After a 1.5 - 2 hour wait while my Chemo Cocktail was prepared we entered the "Chemo Lounge" it was a great environment where we had a nice private room and a private nurse, he (Eric) explained everything beautifully and was amazingly attentive. The room had web service, Television, Recliners, Warm blankets, Food, you name it! We were on the third floor with windows all around, so we saw the action on the street, they had Geraniums growing in the windows- It was a very theraputic place. They then packed me with a Carry- Pack that will continue to give me Chemo for the next two days, then on New Years Day I travel back to Sloan's on 67th Street/York to have the Chemo Pack Removed -HAPPY NEW YEAR!  

At the end of my session we literally closed the place, we were the last to leave, we had a nice chat with the nurses and went back to the garage where Mary parked, it was a nice discounted rate in association with the Hospital.

To sum it up- I went to Sloans yesterday quite anxious and frankly a bit scared, while showing a brave face, I left there feeling Strong, Positive and Optimistic :)

Love to all!!!         And here is a pic of me on my way to the city yesterday at 8am!! 

   

 

 

2 Days of "sleep" and A Birthday Port

Oh man, what happened? lol  woke up this morning with that familiar feeling that someone beat the heck outta me! I'm home after a few days in the city for 2 different procedures.

I went in Sunday night, Peter took me in and we stayed at a Hotel on 50th & Lex that offers "special" rates for Sloan Patients, (Special only by Manhattan standards) But it was nice because it was my Birthday :). The Hotel room was beautiful, a suite, with living room and kitchen. It all seemed like it was just recently renovated.

So I had 2 "Procedures" scheduled one on Monday morning and one on Tuesday morning.

Monday morning started early, I got up @ 5:45a and headed in for a 7am visit. This was for installation of my medi-port, a device that is implanted under my skin- I had mine put on my right Pec Muscle under my collar bone- I think it looks great! My Birthday-port. So they put me to sleep and I woke up with a very stiff neck and sore pec. I cant shower with it for two days, .........I haven't even looked at it yet lol. I was anxious about this operation up until the day before when i finally Manned-Up, It was a big help when many many people told me how great the port is. The positive people are awesome!

So I got out mid day and it was a beautiful day in the city, had some lunch and then looked at a number of apartments, didn't find the perfect place, but found a great place on E39th/2nd (Next door to John Ehrlich) it was just a little too pricy. And I found the perfect place way up on York & 92nd - Everything was right with this place except I think it is too far north and too far from Trains.

Tuesday morning rolled around and I went back to sloan on 76th street, to have a Endoscopy and a Biopsy etc.. I made it in and out fine, but it wasn't totally smooth- took 3x to find an IV spot etc.... But I left in one piece the operating room staff was great. It seems they always are in there.

Driving back from NYC was a task, with loads of traffic and I was really tired, I slept well but woke up feeling like I was mugged! Uggh! Trying to relax this morning and just using Tylenol - But Alls well, I am happy and I am strong :)

MUAH!

Escape to Provincetown A place to believe

Treatment Time!

Treatment Time

Here's the story - I needed to make the decision to either have the Surgery or Have the Treatment ......with surgery down the road

Friday 12/2 1pm   -Dr S! (The gastroenterologist)

He said he would opt for the Chemo if Biopsy is conclusive.  If Biopsy is still inconclusive after 3x he would take the surgery – If the surgery found Vein still connected I would be closed up and treated with Chemo. He noted that it is a very substantial Operation, and could be challenging for me to tolerate the Chemo while recuperating from surgery.

He suggested that there would be No Chemo without conclusive proof, but then suggested he wouldn’t think so, and it would be up to Dr. O

He feels the risk of reoccurance is very similar, however there is a great deal of enthusiasm recently for doing EVERYTHING, all therapies, this would make patient more likely to tolerate. So doing Chemo first then (surgery after chemo)

1- You can better tolerate the Chemo when I’m stronger (pre-op)

2- You are left with a shrunken tumor, making surgery easier

3- Creates Tolerance for the chemo after the surgery

Regarding all my good news he noted, that the tumor looked better than it had, as if it had probably had its environment settle down, but looks can be deceiving

Regarding the vein and the connectivity to it he noted, it was a very small place to see, and we still may find that the tumor is connected. (Oh my)

He felt it would be easier on the body and mind to do the Chemo first.

4:20pm

Spoke to Dr J (The Surgeon) Dr J feels he will be able to have success with surgery, he says its not an unreasonable risk, and he wouldn’t do the surgery if he felt he was putting me at unnecessary risk. He was confident that he could deal with the tumor and remove it, and if he had to address the vein(s) he would.

He then pushed me to ask what I was feeling… I explained to him that I wanted to wait until Monday, so I could discuss it with the Dr’s and with the loved ones and mull it about in my head and sleep on it………..and he said “what’s in your gut Mr. Rampone?” So out came “I feel concern: the surgery that has been a concern for almost a month and now all of a sudden its an option again” I have now built up a strength to deal with the the other treatment plan, I am feeling strong and ready to tackle the chemo and all the side effects etc. The surgery idea makes me feel weak and I need to ‘suck it up” for that.  I also feel the strategy has more hope with treating it, removing it, than treating it again.

He said that he feels that this was the strategy they embraced from the beginning and he was going to call Dr O’Reilly and discuss it.

As the day went on it became clear (I feel) that the surgery angle was being embraced more because of time. We still do not have the proper diagnosis, remember we only have “likely” C Cells. So I am understanding that the Chemotherapy etc. cannot begin until we have certified results.  In order to get those results we need to go back at the tumor (I call the Tumor Peter Griffin sometimes) …….so we need to go back at Peter Griffin and do another Biopsy! Yay another Endoscopy!

Over the weekend I noticed I had been scheduled to have my port installed and my first round of chemo…including the selection of a handbag! J On Tuesday the 13^th.  So I’m thinking “we are-on”…

Monday 12/5

Morning- I am blessed to be in Provincetown! My friend Patrick drove us up here on Sunday morning and it has been beautiful. I love it here, I wish I could do my treatment here; it’s the place that always soothed my spirit. I slept well last night and this morning I made pancakes for us  I love my skillet!! Patrick then started working around the house taking care of stuff that needed to get done- He is replacing the outside lights- I saw my Neighbors Cary & John and Kathy- They are great and caring--I am happy this morning

Late Morning- They told me to stay off the Internet!!

Ya know, I was doing well, I am proud of how I am addressing this situation. I know I am here for a reason and I am never given more than I can handle, I know somehow I can help others through what goes down in this situation. So I’m doing well, feeling strong, and mostly feeling amazing love from others, (The most important learning experience of my life)   

 So I log on to the Sloan site to get Dr O’s #, I want her to call me on the House phone because ………surprise…The AT&T service stinks here. While on the site I see a video of the Dr giving a lecture on changes in treatments etc of Pancreatic Cancer… I said “I should watch this and learn everything about my disease” I start to watch (I knew better at that time) and within a minute I see the statistics showing a very small chance of survival -Nicely presented on a chart – Ouch, it hurt and I went into a tailspin feeling very doomed. When first diagnosed this is what I thought of- then I realized that wasn’t the question to ask and that it was A-ok not to ask it because no one had an answer.

But at this moment I was going down hard and fast- I didn’t want to slam anyone with this so I dialed…….Johnny E (my x) I don’t know why……. he had said many times “you can call me” and he had his own bout with Cancer among other health challenges over the years, He is a TROOPER and always pushed through with a survivor attitude. And he loves me. And I GUESS all that’s is why I leaned on him today. He was great and I hung up the phone 20 minutes later feeling much better and being back on track! As I have found out on my journey people appear when they are needed and I am provided with what I need when I need it. The world is an amazing place!!.... Except for the Internet  I found out John is very strong and I have a great life ahead.

Phone Calls……. Right after recouperating from that NB the calls began, First I get a phone call from Dr S’s Office, Sasha wants to schedule my endoscopy for the 13^th. Then I get a call that Dr O, who wants to schedule the Port installation for the 12^th. (Just what I wanted for my birthday)

At 12 Dr O’Reilly called, we had a brief conversation in which she sort of was moving forward with the treatment plan 1^st then the Surgery later, making sure that’s my choice as per Dr J . I asked her new questions I had regarding rate of survival etc.  She said she thinks the “Treatment 1^st” route is perfectly appropriate due to my condition and strength. She said she feels there is a great deal of evidence emerging that this may be the better route. She mentioned recurring C  after the Operation, and she feels this is a fine choice. ….ok

So here we go, we have a plan…….. 1 week to blastoff wow!

Patrick just came in from Commercial Street, he bought me a present, a silver ring that says, “Believe” and ya know what …..I do! And with friends, family, and the Healthcare team that I have supporting me I know I can do this, I believe. 

Happy Birthday to me LET’S GO!!!!  I CAN DO THIS

Good News & Surgery Option returns.......... oh my!

Dr O’Reilly called last night, after finishing the meeting that the team of Dr’s has each Thursday afternoon. She said they spent some time looking at the results from my scans, and the Endoscopic Ultrasound done by Dr Shattner the prior week.

She felt she had Good News for me, I told her it was fine to hit me with good news! J

First off she said they felt the Pancreas head mass looked the same, this is great news because she feels I do not have the “rapidly changing, nasty type” of cancer that often comes with Pancreatic Cancer. This made her very happy.

She also said that there are no signs of Cancer in the Liver (spreading) Yay! And the new stent was working properly and should continue to make me feel better. (And I do feel better!) I am also on some new meds that help me digest meals and reduce heartburn, I think they are starting to work.

Additionally they feel that the tumor is less involved with the blood vessles than they thought, and it is sitting on the vein and not compromising it at the moment. This change of opinion is a big deal and Dr O’Reilly says it opens back up the surgical option.

#1 Surgical Option- So this would mean doing the operation now to remove the cancer (The Whipple Procedure) and then begin Chemotherapy after the surgery. It is quite an involved operation. This Hospital performs more of this operation than any other place, and we had a long conversation with a “fellow” before we met with Dr O’Reilly this Tuesday about how focused and good they are with this procedure.

 #2 Shrink & Treat Option- This is what I was planning on, it involves having an additional Endoscopic Ultrasound followed by installation of a port in my chest under my skin (yuk) and then Chemo therapy at very heavy dosages, about 4-5 hours in NYC, then they hook me up to a “traveling chemo bag” and I wear that for 2 days then I go back to SKCC and they remove it. This would happen every-other week for a few months, than we would see where we are, and probably go to another few months of chemo accompanied with Radiation therapies. Then at some point the operation would happen and then I would go on follow-up Chemo.

So I am gathering my information and opinions and will make a decision over the weekend so I can inform them on Monday.

I am developing my questions:

Which plan has the best survival rate? Which has a better chance of non reoccurance ? Why is another Endoscopic Ultrasound required? What Outcome might change? Which option is easier on the body and mind? What is the Length of overall treatment estimated to be with each choice? Just some thought starters…..

I’ll keep ya posted!!

Love John

World Aids Day

Consider today that getting tested and knowing your HIV Status is not something to fear, get tested and encourage others to get tested, If you need encouragement hit me up! :) 


-So here's my tribute to all those lost to AIDS and for me especially those in 
the early days in New York. Those were scary times and Those were brave men! And my two friends who are long term living w Aids