Friday, November 16, 2012

Fighting Cancer Fatigue


Thu Nov 15, 2012 6:59pm EST
(Reuters) – People who have been treated for cancer often have lingering fatigue, but regular walking or cycling might help boost their energy, according to a UK study that looked at more than two thousand people.
The long-lasting tiredness of cancer patients has been blamed both on the cancer itself, including cancer-related pain, and on the effects of treatments such as chemotherapy. Prior studies point to talk therapy, nutrition counseling and acupuncture as possible remedies.
But light-to-moderate exercise has the advantage of being something people can do on their own time, for little or no cost, said the researchers, whose findings appeared in The Cochrane Library.
“We’re not expecting people to go out and be running a mile the next day,” said Fiona Cramp, who worked on the analysis at the University of the West of England in Bristol.
“Some people will be well enough that they’re able to go for a jog or go for a bike ride, and if they can, that’s great. But we would encourage people to start with a low level.”
Cramp and her colleague James Byron-Daniel pooled findings from 38 studies that directly compared more than 2,600 people with cancer-related fatigue who did or didn’t go through an exercise program.
The majority of that research looked at women with breast cancer and the type of exercise program varied, from walking or biking to weight training or yoga. More than half of the studies included multiple exercises or allowed participants to choose their own type of physical activity.
The amount of prescribed exercise ranged from two times per week to daily workouts, lasting anywhere from ten minutes to two hours, depending on the study.
When they combined the results, the researchers found physical activity both during and after cancer treatment was tied to improved energy. In particular, aerobic exercise such as walking and cycling tended to reduce fatigue more than resistance training.
“What we do know is there will be an appreciable difference; the average patient will get a benefit from physical activity,” Cramp said, though the actual benefit will vary.
For example, there were exercise-related benefits for people with breast cancer and prostate cancer, although not for those with leukemia and lymphoma.
“Some of the hematologic patients may not have the reserves to always tolerate the aerobic exercise,” said Carol Enderlin, who has studied fatigue and cancer at the University of Arkansas for Medical Sciences in Little Rock.
“They do not always have the oxygen carrying capacity, for instance,” because the disease and treatment affect blood cell counts. For those people, non-aerobic exercise or exercise at a lower does may be a better option, added Enderlin, who was not part of the research team.

Wednesday, November 7, 2012

Wise words by Mother Teresa


Wise words by Mother Teresa

We need to find God, and he cannot be found in noise and restlessness. God is the friend of silence. See how nature – trees, flowers, grass- grows in silence; see the stars, the moon and the sun, how they move in silence… We need silence to be able to touch souls.
~Mother Teresa

Sunday, November 4, 2012

Over & Over Again

It's not what we do once in a while that shapes our lives, but what we do consistently- To direct our lives we must take control of our consistent actions.

It's interesting that we can open up our lives and reach our objectives by having the discipline to do things consistently!

Saturday, October 13, 2012

Indian Summer

An amazingly stunning day in NYC, I love the Indian Summer type weather. What a difference this week is from the same a year earlier! I'm not too certain what the weather was then, but I know this day I am alone, but don't feel alone.... it's good to be alone sometimes.

This week last year I was just a few days away from being diagnosed with Pancreatic Cancer, life was confusing, I new I was sick but couldn't get my Doctor to understand that........ This forced me to break off a 20+ year relationship with a man I knew somehow had my best interests at heart yet wasn't opening up his senses enough to see, to listen, to feel his patients deteriorating situation. After all I was always "The Strong One" right? ...right??

This year I am The Strong One in such a different way, this year I am strong for myself first. Being strong for myself first has made me substantially stronger for others. I am 1 month from my first "Cancer Free" tests.

Today I am alone, I am happy and I am enjoying Indian Summer.

Friday, May 18, 2012

Holy Moly - getting out of the Hospital

Sorry for the poor updating on my part! In fairness to my self..."Holy Shit" I've been knocked on my ass- Wow, I like to think of myself as a tough guy but this totally through me of my horse.

I was in the Hospital (Sloan Memorial Hospital York/67th) for about 10 days which was longer than expected. So I am "Out" of the Hospital for 2 1/2 week.

The surgery was major league if your not familiar - Ill describe it as "They split my torso from chest down took out a lot of stuff, re positioned what remained re stitched together the organs in a different pattern and BAM I was done.

There were some complications resulting in large loss of blood and also several Heart Arrhythmia episodes, so that's why I got held up for all the extra days.

Anyway everyone really everyone at the Hospital was great, friendly, caring, efficient. I was pretty uncomfortable the whole time and even I knew I was on heavy doses of drugs for pain etc.

So without a drawn out bunch of stories at 10am on a Sunday they poured me into a cab on York Avenue and off I went to my sanctuary of an apartment on York/92nd.

Getting home..........Getting Home....... don't ever underestimate what it means to get home! I felt so much better just getting into my own living room! I Cried like a baby (but I am known to do that) ...........probably the damn drugs?

I'm Home! Thank God- And thanks to all those who keep me in their thoughts!

Tuesday, May 1, 2012

Today I Beat Cancer

Today I am Cancer Free ! Thanks to everyone for love and support! I will send details shorttly.

I love you!

Tuesday, April 24, 2012

Pearce Love Strength

Tonight

Il lfill in an update a soon as possible

I made it thru surgery, it's been hard as heck - I've been wiped out it all here's a pick from tonight '

Love & Prayers

Monday, April 16, 2012

We're on!

Waiting in pre-op, about to head to O.R. - Some good sedation starting to kick in.

I have decided to envision this as going for Liposuction - I am visualizing myself at 6' and 205lbs! SEXY!!!

And in my new post cancer life I will maintain that weight! Ummmmm SEXY!!


I'm leaving now- I love u all!!

Wednesday, April 11, 2012

From Patrick Swayze to Steve Jobs to Peter Griffin

Now I understand what happened during the discovery of the cancer in my liver last week. It took a long time to identify the pathology. And the Dr's had trouble matching the newly found cells with the original tumor in my Pancreas.

Going back to my initial diagnosis, you may know it took an exceptionally long amount of time to identify the cells taken from the tumor out on Long Island. Indeed I ended up having 3 Endoscopies (sp?) (Needle Biopsy's)  where they sampled the Tumor before they could identify the type of cells. (The Patrick Swayze Type- aka Nasty)

So when they found the cells in my liver and sampled them (Bigger Sample) they identified them as Neuro Endocrine a different type of cancer cell (The Steve Jobs Type-somewhat Less Nasty)

Although it is possible to have the two types existing at the same time it is highly unlikely.

Now, going back, they believe that the cells in the Pancreas are also the Neuro Endocrine type.

This is really good news, and provides a little more hope! :)

So theres the Steve Jobs Type, The Patrick Swayze type.....and my type The Peter Griffin Type.

purplestride.org/newyorkcity April 21, 2012 10a Walk fundraiser for Pancreatic Cancer Riverside Park NYC

Sunday, April 8, 2012

Ready for Surgery 'One mo time

I developed a weird ailment where I would feel light headed and as if I was about to faint, it ended up pretty bad and I was admitted to Memorial Hospital- While in there they did all the tests for the Whipple operation, along with brain scans etc. I have to say it was a very good experience, the nurses and the staff there were remarkable, the whole place was drama free, and the food wasn't too bad either!

So i got out after 4 days, with some changes to my medicines, and I feel much better.

Now on Easter Sunday I am entering the week before my surgery, I am tentatively scheduled for April the 16th.

This week I have many Dr Appointments in order to getting clearance from the Cardiologist, Neurologist, Oncologist and Surgeon.

I also will have Acupuncture, Meditation, and Massage treatments. And most importantly I will try to relax and be strong and do somethings thst make me happy, like today being in Provincetown, and then maybe getting to the park etc.

I will be ready come next Monday! :)

Love to everyone!!

Thursday, April 5, 2012

Hold The Chemo

I was not excited to be restarting the Chemo, so when i received a call 2 days before my start date telling me to hold off on starting with the oral Chemo, because it was taking an unusual amount of time to get the pathology reports from the Liver Cancer back..... I wasn't too disappointed.

Then on the day I was supposed to start I got another call from the Oncologists office telling me not to take the drugs and please come see Her on the next day.

I was surprised when i met with the Dr and she informed me that she was optimistic because the type of cells they found in the liver were a non aggressive type and they feel I can be a candidate for the operation again.! !

Wow- I was then scheduled to meet up again with the surgeon on Tuesday.

I was excited to again feel I had a chance to get rid of the tumor, and a bit scared again at the thought of that big operation.

Post Surgery Plan

So I had to get used to the idea that Surgery was not an option.

Peter Griffin- I call my Tumor Peter Griffin based upon the Family Guy character. I named him almost immediately upon his discovery. My association was that he (the Tumor) was a dopey middle aged guy of very limited intelligence taking up space in my life.

Now my chance to get him outta my belly was gone? Shit!

But the battle goes on! The next meetings were with the encologist, who laid out a Chemotherapy plan that would start right away. She explained in her compassionate way about the cells that were found in the liver and that they were analyzing them.

5 days till chemo-starts up again......oh Joy! How the hell can Peter Griffin be playing such a strong hand??

Well 5 days of trying to feel strong again!!

3/16 Whipple Surgery Day Detail

March 16th was my surgery day! Now that things have calmed down, I can tell the story with some more detail. I was kind of excited and kind of scared shitless :) They would be removing the Tumor, and some surrounding tissue and organs.

My sister Janet had come in to town to give me support from PA, her plan was to stay while I was in the Hospital 7-10 Days and then stay in the city till the end of the month to nurse me through rehab.

The side effects of the Chemotherapy were finally starting to wear away, but I was still quite exhausted and drained, I hated the 9 weeks of Chemo Yikes! But I made it through.

The operation I was having is called the Whipple, the surgeons office prepared me for the good the bad and the ugly of it all, including the wake up in the dark ICU with many tubes in many places etc.

I went in to Memorial Hospital bright and early that morning armed with my sedatives and the support of Peter, Wayne & Janet.......What more could a guy ask for?

I had a sort of horrible experience in the get-ready room with a young nurse who had some "trouble" accessing the port in my chest. Thankfully another Nurse came by and ended the carnage.

But thanks to lots of sedatives while I was being made ready I was asleep BEFORE i saw the inside of the operating room, which makes me happy, I don't really enjoy being awake in those super bright, super chilled rooms while the OR staff does their set up.

So off I went to the 4-5 hour operation!

And then ........I Woke up.........

Surprised I woke up in a very cheery environment, not at all the high-tech dungeon i expected! I had trouble shaking off all the drugs but the room gradually came into focus, I was sitting quite upright in a rolling bed, a nurse was at a desk to my left and a few empty beds were on either side of me. The room was bright and i felt surprisingly well! No breathing tube! And it sure didn't seem like there were other "tubes" in my nether regions...... I could hear the nurse on the phone telling someone that I was awake. I asked her what was up and she said "Your surgeon is on his way to speak with you"

It wasn't long, or didn't seem long before I saw the Surgeon was on his way down the hall followed by Wayne, Peter & Janet. I was happy to see friendly faces although I'm not quite sure the look on their face was happy.

Bottom line was that prior to the big surgery they do laposcopic surgery, while exploring the Dr discovered previously unseen Cancer cells were in my liver. With the cancer spreading to the Liver a decision was made that the Whipple operation was no longer viable.

So now I was feeling better than I thought physically but not so great emotionally. My Abdomen started to hurt from the incisions.........

I was still remarkably hanging in there, I guess I had become used to the ups & downs and twists & turns of this cancer battle, I knew there were more battles to come and I would get my wins :)

Thursday, March 22, 2012

First Day of Spring

What an amazing day, the weather was great and it stayed light out for so long. This was taken on the roof of my building, about 35 stories up!

Friday, March 16, 2012

Road block

Hi Guys its me!

The good news is I did not have to proceed with that mega-operation today :)

The bad news is that upon the initial incisions we found Cancer has spread (or had been existing already) in the liver. We cannot remove the tumor now, i'm no longer a candidate, removing the tumor would apparently make it not possible to treat the liver issue with Chemotherapy for an extended period of time.

So I am off to the Oncologist on Tuesday- And we will attack this mother head on!!

Thanks for your love and support,  it's what keeps me strong-

Great Weekend!
All set for surgery this morning @ 11:00am! Thanks to everybody for your prayers and good wishes. I am a lucky man :)) I'll keep you posted on my healing journey.


i will give this blog address to someone, peter or janet etc. to update. i will be out of it for at least a day or two- so hopefully they can keep u updated.



Thursday, March 15, 2012

Surgery Date

Ok Surgery set for tomorrow 3/16 Friday @ 11am- They may update the time- but thats what we know so far! Yikes! :)

Friday, March 9, 2012

Help is on the way (beauty emergency)

So my big operation is scheduled for next Friday! The Dr's are attempting to repair the damage done to my looks !!

Hehehe. Here's today's version of me- big love to all of you, make it a great day!!

Friday, February 24, 2012

oops your port slipped baby :(


Just when you think it’s safe to stick your head out! Bam! Lol So here we are and I am beginning to feel the most like the rest of you as I have in about 8-10 weeks, It’s a very good feeling!! J Especially the appetitite! And I’ve regained some energy.  I am enjoying things and feeling stronger. I feel like I am recapturing some weight as well.

Yesterday was my test day, this had been set aside for running Cat scans, and blood work etc. Whatever the team would need to analyze the situation. Mostly as I understand it they will be viewing the Tumor and determining if the Chemo has had a positive effect …(shrinking the bastard) or what. And determine the way forward with Surgery or other means. (Radiation, Chemo etc.)

So I am frankly anxious a bit getting the tests. They had to do the IV’s from both arms- yuk…. Anyway the results are to be presented to me on Tuesday the 28th.

This afternoon however I get a call that says one of the scans is revealing that my beloved medi-port has moved, and it they have to operate and replace one of the tubes in position- uggh, that port always made me anxious to begin with, So they are in a rush, they want to operate on the port Tuesday morning, so I can have Chemo on Tuesday YaY!!! And in order to do it I needed to go have blood work done …..Now.

So thanks to God I am just down York Ave from Sloan Memorial and a $4 Cab ride and ½ hour and the task is done!

So now I am waiting for confirmation of the surgery appointment and we are back on schedule.

I’ll tell ya what though; I need a good caregiver with me on Tuesday when I speak with the doc’s! Because I will be STONED from that Twighlight put-to-sleep stuff they give me when they operate and move my port. The information on Tuesday will be heavy duty- hopefully good, hopefully planning the next stages of my treatment.

Sunday, February 19, 2012

2/15 Update


Checking in :)

Yesterday, I went for another round (4th) of Chemo, a few hours worth, today I am receiving more via the hook-up into my port in my chest. I am starting to rapidly get some of the side effects, so I figured I would write you all a note. Judging by the past I get too weak to do a-n-y-t-h-i-n-g including type or speak, shower etc. on the phone pretty rapidly. 

I will probably be in tough condition through the 22nd. If anyone would like to do some care giving in the next 8 days or so please feel free. So many thanks to Wayne, who went to Doctor and Chemo with me yesterday, and made me dinner J. And then Peter arrived, this afternoon my good friend Gene from Jersey is coming by, and staying the night, and taking me to get “un-hooked” tomorrow. Peter will be here Sat and Sun 18 /19.

The reaction to one of the drugs is a severe reaction to cold, it is coming on fast, so I won’t be able to go outside if its too cool, and I can’t drink or eat anything cold, its already that I can’t do laundry or get into fridge. I will use gloves to go in fridge. This one is one of the weirdest –lol!!!!
I’m also getting the symptoms where my eyes and eye sockets hurt, especially if I cry, so NO CRYING- lol. This would be from watching something sad on TV… Im blessed with a very emotional DNA
And then the usual other side effects are arriving…

Even though I faired well, I still lost another 4 pounds last week, I hope I do better this week, thankfully Danielle’s Mac & Cheese arrived on the weekend – I already ate 1 of 3 containers!!! Marybeth also delivered some Chicken Pot Pie Homemade. I’m determined to not drop much lower, I am eating Ice Cream and everything. It’s a Yummmmmm Diet! Except when the cold sensitive side effect comes in- it no more ice cream etc.
But on a bright note I was better the last round than the one the one before it! The last few days were very good for me! It was nice to have so many visitors.
Yesterday my white blood cell count was the best it has been since November 21st 2011. You may recall I was dangerously low when Janet took me to Provincetown about 3 weeks ago. I have some concern with my Cancer Antigen level that shot up on yesterdays test after continuously dropping.
After I finish Chemo tomorrow I will get the charming WBC Booster shot and then I have the test on Thursday the 23rd at Radiology. This will be a good look at how I am responding the treatments, and dictate the future course of action.
I will wait to discuss with Dr. O’Reilly.  We will have a lot to discuss when I see her on February 28th.

Apartment Life
I am very happy here, I am very well organized and feel much more comfortable being close to the Doctors, the Hospital etc. etc. I picked a great building, a few days ago the super hung up a handicapped rail in the shower for me. Everyone is very, very pleasant, I love NYC and I’m glad to be back here. I’ll write more later. But a Big thanks to Patrick Jones who pretty much did the entire move for me, and set up everything, I could not be here and comfortable without his Herculean efforts. He's back in Seattle now.

Here is the info, new phone number address etc. Please use this phone # it is MUCH better for me than speaking on the cell phone: (I can hear)
1-646-360-3910 
The new address is:     John Rampone
                                      408 East 92nd Street #1403
         New York, N.Y. 10128

So all for now, I love you all, I appreciate the help, the texts, the food etc. the phone calls etc. I am feeling strong, and I am going to be a survivor… and I will stay strong!
All my Love-  MUAH!
John

Friday, February 3, 2012

Upate 2/1



Just spoke to my dad who is enjoying some time in sunny Florida, It sounds wonderful to me. I would dream to get to Florida when I am done with Chemo treatments and before my operation to build up and get tanned and rested, but I’m sure Doctors won’t want me on airplane and exposed to mega-germs. But it’s warm enough here so far and already February! Spring can’t be far away!

Long Time friend Patrick Jones flew back here from Seattle to help out, he arrived a few days ago and has been a great help, Yesterday he took Bradley the Lab to the Vet and he got “fixed”. Everything went well and Bradley seems very fine. Its good Patrick is here to help take care of the dog. Frankly the puppy energy has been too much- and I’m supposed to stay clear of the dog because of germs etc.

So last week my angel was Janet, I had a very bad round of Chemotherapy that left me in dangerous condition, I got every side effect in the book. They put me in the Main Hospital Urgent Care Unit on York Avenue on Wednesday night for a few hours and rehydrated me and gave me a shot of White Blood cell Producer. I could hardly move and lost 6 pounds in a few days. They also said I could not due my next round of Chemo. They told us that I needed to get and stay in a germ free environment and do nothing but rest.

So Janet asked me where did I want to go? The house in Asharoken, or Maybe my sister Mary’s or Brother Wayne’s house, or she said would you like to go to your house in Provincetown?? I said Provincetown is like 5-6 hours away, she said “that’s ok” you wanna go??? We can go now- so I said Hells Yeah!! And we took right off from Sloan’s and rolled up to Massachusetts. I walked in the door and crashed, so happy to be in my own house and such a peaceful healing place as it is!.

I struggled with the shot I got, it has a very painful side effect of aches & pain in your bones, that can be rough, So you can imagine how excited I was when I woke up to a call the next morning from my Oncologist that she wanted me to “swing by” for an additional shot. She said my numbers were so low it was dangerous. I said I cant swing by I am now 6 hours away!

Meanwhile… I developed a very angry rash on my back, Janet had concern it was shingles, so we made an appointment at Outer Cape Health Services to have it looked at by a doctor. I must compliment OCHS they are so wonderful to deal with. The Rash was not shingles thank god, so they gave me a medication and with Janet’s help we managed to get the WBC Shot handled through Outer Cape. Turns out they have Cancer Patient in Town, and the Pharmacy had one of the shots in stock. They gave it to me. So great!!! (More bone pain! - lol)
It was wonderful spending time with Janet; she fed me cared for me and even cleaned the house while I recuperated!! I can’t thank her enough.

She drove me down to Mary’s house in Westchester and Peter picked me up there, I even got a nap in @ Mary’s.  By the time I got home my strength was coming back and I felt better with each passing day! I was bouncing back!! I started a new round of Chemo on Tuesday and it seems to be going well. I regained 5 lbs while in Massachusetts! So I had a net loss of only 2.

Apartment Found-

Well finally moving day has arrived, I’m happily moving into a nice little apartment I found on the Upper East Side. From when I was first diagnosed I wanted to be closer to Sloan Kettering, It’s hard to commute from Northport when your appointments are morning, So I need my ride buddy to hit the road @ 5am! Ouch! Lol and I often don’t feel up to driving myself on a long trip. So this is nice and easy.

I can also get anything I need without driving, you know u can “order up” anything, be it the pharmacy, groceries, cooked food or “whatever”.

So I’m at 92nd & 1st – found a great place, that is spotless clean and has bright southern exposure, it makes me happy. Currently I’m scheduled for an operation in mid March that has a bit of a long recovery, then 2 months or so of additional Chemo, I feel this will be a good place to rest heal.
           
So that’s your update, I am told that when you get a diagnosis such as I have its hard to handle but its hard for friends, family, parents etc. So I just want you to know that I’m doing fine, I’m fighting hard, and I’m going to beat this and be cancer free! BANK ON IT! I come from good stock

And thank you for everything everyone has done to make life be easier 4 me, Your help and most of all your positive love & positive support
Big Hugs
-John

Wednesday, January 11, 2012

Chemp #2

What a remarkable change in the weather. Here I sit after a long day of Chemo-therapy again, and I am feeling..........Not To Shabby at all. Amazing, last time I was totally exhausted from the moment we left the Cancer Center, I slept on the way home and crashed in my chair as soon as I walked in the door, tonight i am awake and feel good.

I do have some of the shooting knife-like pains, but i can deal with it. And of course I have 3 days to go, so we will play it by ear.

I met with Dr O'Reilly at 7:30 this morning, and explained the tough side effects of last weeks treatment, especially tough Fatigue and Nausea. She modified the mix of Medications i take, adding a steroid, a nausea and an anti anxiety drug. This is probably the reason I feel so strong now. Its amazing. 

It was an early day and i thank Wayne for his moral support today, I only lost one pound, probably from dehydrating. But overall health is good.

I got my schedule laid out for 3 more chemo sessions, a bunch of Tests, CT Scans etc, then we will discuss the results, progress etc, (Assuming there are no hickups, which we should be prepared for) We will meet with the surgeon and think about the operation in March.

Love John

Saturday, January 7, 2012

1/7 1-week down :)

1/7 Saturday is off to a bit of a better feeling, I woke up at about 5am and don't really have the nausea level that i have had since last Sunday, I do have an amazingly "Rumbling" stomach......wow, you can hardly hear yourself think over all the noise! I'm also still feeling like I am operating on very run down batteries. From other people I know who have experienced similar treatments I just need to accept that I am going to be wiped out, and I need to look at it as a good time to accept the rest for my body. I'm trying to do this but my mind hasn't figured out how to accept the "down-time" yet, much less welcome it. I need to work harder at this or I will go crazy.

But also I am in better spirits than recent days when some depression kept setting in. Friday was the first day I got some exercise and fresh air, and that made a difference. The medication I'm on prevents me from going out in the cold or touching any cold surfaces for a few days after I take it, so I have been locked up living at room temperature. I really missed cold drinks!! But the last two days I have been allowed cold drinks again YaY!

So overall I feel I am handling things well :). Here I am right in the thick of it!! I have had some strange Eye and Eyesight issues and the occassional odd chest pain- but other than thats its, nausea, exhaustion and "rumbles" ...rumbles is the code word :) 

Upcoming week: Hopefully I can hook up with the Nutritionist this week, It's been hard to meet him, he is at some location on like 70th street, also I want to chat with the physical therapy people from CancerCare in regard to exercise, and I am trying to finalize paperwork for CancerCare and Disability forms and Of Course Chemo on Tues-Wed-Thurs Yay!! 

It's all good It's going to be a great week!! and a good new year!  

 
-J