Mom's Eulogy for John and John's Eugoogly

This is a copy of what Mom read for John (her own words and an email a dear friend wrote about John) on Friday followed by words John wrote for us to share.

    I am truly honored and overwhelmed by the turnout.  So many of you have shared stories and pictures over the past few days  A dear friend shared these thoughts.

   " One thing that came to me as I pondered the "why" of this is that I hope no one will ever say that he lost his battle to brain cancer.   Out of the blue brain cancer struck and he never stopped fighting.  In the process he accomplished so much - he showed people how to stand up to this disease.  He had a sense of the big picture - that brain cancer has to be cured and he took up that fight.  He raised money for research.  He shared through his blog and friendships so much information that will help others appreciate life and know how to confront disease when it comes - and it comes to everyone.

    John Paul showed what family means - you all shine as examples of caring and love.

    So brain cancer lost a lot of rounds in this fight with John Paul.  If he gets to rest now, it is not because he lost the fight, it is because he has accomplished enough for one cool guy to do.

    Tears accompany this - John Paul is so young.  But then I fear that he accomplished more in his years than I have in mine."

   

    John was John.  He left a lasting impression on all of us.  Even though he never asked to be anyone’s inspiration or hero, he became just that.  He did it by living each day …and in the past few years, living them with honesty and no regrets.

John left a few thoughts to share with all of you, so I will read them uncensored….

Eulogy

I am so arrogant and so controlling that yes I wrote my own eugoogly.  I really wanted to say things.  I’m not sure what the turnout looks like but I want to tell all of you some of the guiding principles in my life.  There are about 20 things I can say I did every day that made me the way I am.

·          •   Laugh,

·          •  get under someone’s skin for sport,

·          • make a provocative statement which may be true,

·          •  tell a very descriptive story,

·          • make a joke at someone else’s expense,

·          • laugh,

·          • cry,

·          • get angry,

      • over extend yourself,

      • give unsolicited advice,

      • get stressed for no reason,

      • find one current event to form a crazy opinion on and tell everyone you can think of,

      • laugh,

      • cry,

      • and love the people in your life

Today you came for some reason but I liked to think you’d be here to honor what I wanted.  I had every right to not write a word to anyone.  I had every right to not see anyone.  And I had every right to quit so long ago.  I don’t know who is here obviously, but I hope that whoever is here, and whoever wanted to be here is what I imagined I left behind.  And that is an army of people who knew that I loved them as much as I could.  Who will always remember me as I hoped they would and not whatever I became as my mind wilted away or as my strength disappeared.  And I’d also ask that when you shed tears, when you get angry or feel agony, when you want to look at the sky with anger and want to shout, that instead you use that energy to make a difference in a way that aligns with the goal I have had all along.  That goal was to have people I met think they were a little better for having known me.  Guess I was the first one to go to bed at this party but don’t worry I’ll see you all on the other side.  Count on it.

Good night sweet prince may flights of angels sing thee to thy rest.

Caroline's Tribute

This is a copy of the tribute I gave for my brother at the funeral.  

John Paul - My Superman

It feels like an impossible task to try to sum up my brother in a few minutes.  He loved hiking, cooking, traveling, and running.  But those were just things John did.  What made John so amazing was how he lived his life.  He was strong.  He was courageous.  He was funny.  He was loving.  He embodied so many virtues we’d all love to claim.  John may have seemed average to those who didn’t know him, but for me, he was my Superman.

When John was about 4, my Uncle Steve asked if he could be his friend.  John replied, “Sorry, I already have two friends - Papa and Superman.”  It’s a funny story, but it really is the opposite of who John grew to be.  His capacity for love was unparalleled.  I’ve never known anyone who was able to make friends and hold on to them the way John did.

John’s heart was enormous.  He made everyone feel that they were his closest friend and confidant.  I don’t say this to diminish anyone’s relationship with John.  I say this because John’s ability to love was that phenomenal.  There was room for all of us in John’s heart.  It was his super power.  He had enough love for us all.

Like John’s buddy Superman, he was also courageous. He was the most courageous person I’ve ever known.  I mean truly courageous.  He knew he was dying.  He knew these tumors would take his life.  He kept going.  He kept fighting, right until the very end. But before cancer, John was already courageous.  His fight with cancer may be our last memory of John, but it shouldn’t be our only memory of him.  He lived a fearless life.  He was intensely protective of his friends and family.  He was unafraid to show emotion. 

John couldn’t leap tall buildings in a single bound, but he could jump: off of bridges (in Maine and Annapolis and who knows where else), into bodies of water because of bets, and from gondolas (in Switzerland) and cliffs (in the Alps and Lake George).  It’s how he lived his life – jumping in with both feet.

When we were kids, our bedrooms were right next to each other and we shared a wall.  Each night before we went to sleep we would knock on the wall and say, “I love you.”  That’s another thing about John.  You never wondered where you stood with him.  He wore his heart and his emotions on his sleeve.  If he loved you, you knew it.  If he was angry with you, you knew it.  Even if you didn’t have the opportunity to see John one last time, I doubt there is anyone here who wonders if John cared for them.

People were drawn to John.  His personality was magnetic.  He drew you in with his attentiveness and sincerity and then won you over with his humor.  One conversation with John and you were hooked. 

His humor was witty and quick.  He used it to defuse arguments or awkward situations or just to make you laugh.  John’s humor is what I will remember most about him - his ability to turn mundane moments into side-splitting adventures. It’s impossible to try to come up with simply one example that demonstrates John’s humor because every conversation he participated in was littered with sarcastic references, movie quotes or smart observational humor. He had the ability to be funny without hurting others.  Jokes were most often at his expense.

John could win an argument even if he was wrong.  He told me that the thing he hated about the iPhone was that it was making it much harder for him to win arguments when he was wrong (people could check his declarations immediately) - not that he couldn’t still win them, it just made it harder.

John was a good cook.  One of the last nights that we went out with John, we got sucked into a marathon of a TV show called “Chopped” before heading out for the evening.  I’m not really sure that the show is even that good, but John’s running commentary kept us all entertained to the point that we second guessed our original plans. We did eventually make it out that evening, but when John was around, there really wasn’t a need for other formal entertainment.

He knew random trivia. 

He loved the Patriots.

He could quote TV shows and movies like no one else and at exactly the right moment.

He was competitive.  After his last surgery, he told me that he was determined to beat my daughter, Lucy (who was 9 months old at the time) to walking.  When he did walk, he was so happy.  He sent me a video of himself taking unassisted steps with a note that said, “I pulled ahead of Lucy!” 

John loved running.  It was how he cleared his head and kept his cool.

John was humble.  I’ve heard that you can tell a lot about a person by the way he treats a waitress. I think you can tell more about a person by the way he treats his nurses and doctors.  Even during John’s last trip to the hospital he was polite and humorous.  He thanked the nurses and doctors for everything and apologized for requesting anything. 

I could talk about John for hours. Summarizing anyone’s life is hard, but it’s even harder when it’s Superman – someone who has lived such a rich and deep, even if brief, life. John did a lot of living in his 28 years. He often said that he never wanted to be anyone’s hero – but he was.  Simply by being John, he inspired us all to live better, fuller lives, and to not take anything for granted.  

As Mae West once said, “You only live once, but if you do it right, once is enough.”

Dad's Tribute

For those of you who couldn't make it or weren't able to hear this is a copy of my dad's tribute to John.

It is hard for me to put into words the grief I am feeling today.  It is any parent’s worst nightmare to bury their child, and today, I am faced with that task.  It is very comforting that so many friends of John gathered here today. 

John Petrovick has many friends.  Even though I was his father, I am proud to call myself a friend of John.  People say “If you want a friend, be a friend”.  I believe the number of friends John has is a testament that John Petrovick knew how to be a friend.  

John had a great love of nature.  He found peace in mountains, streams, forests, and the desert.  We first shared that peace on the beach in Ocean City, MD, and then later found it in places such as Lake Maranacook, the Appalachian Trail and the Grand Canyon.  I will treasure John’s friendship and the peace we shared in nature for the rest of my life.  

All families have a dynamic.  Part of the Petrovick family dynamic is competition.  We can turn any activity in a competitive event.  This is not limited to only games.  Oh no!  You might think people fish for relaxation.  Not in our family.  John was exposed to competitive fishing long before the professional bass tournements were broadcast on ESPN.  First fish, biggest fish, most fish were all part of any Petrovick family fishing trip.  Parents purchase Legos for their children to help them develop imagination and understand spatial relationships.  We built Lego boats, planes, spaceships, whatever, and then held monumental battles to see which design was the best.

Sometimes this competitive dynamic went too far.  In hindsight most of the time, the competition between Caroline, John and I went too far.  John was frequently the youngest, or smallest and so he was at a distinctive competitive disadvantage.  Caroline and I gave no quarter, and John never asked for any.  We have a saying in the Petrovick family:  “We’re not having fun, until some one is crying”.  As I have looked around the rooms yesterday and today, I must say John, lots of us are having fun. 

 In closing, John taught me the importance of humor.  He frequently used humor to make a point, or defuse an awkward situation.  Through his humor, he had a way of making others feel good inside.  Even though he was going through many different treatments, and enduring lots of pain, John would find humor in his situation.  He and I often joked about the lack of hair on our heads.  Let me assure you, in these exchanges, John gave as good as his got.  No quarter given, none taken.  

I know John would want us all to remain humorous and positive here today, and forever.  John, your fellowship, humor, competitive spirit, and bravery made you great.  Now with your passing to a greater place, allow it to make us all great.  I love you, John.  

Celebration of John's Life - Program

Program from the funeral service.

Slideshow

Slide show of John's adventures - December 13, 1983 - April 28, 2012

We love you John.

WBAL TV News Story about John

What a great piece about John and how he inspired so many.

Obituary

John Paul Petrovick, 28, of Arnold and Baltimore, MD, died at home surrounded by family, on April 28, 2012 after fighting a courageous battle with brain cancer. He was born in Salisbury and raised in Millersville. John graduated from Archbishop Spalding High School, Stetson University, where he was a member of the Alpha Tau Omega fraternity, and the University of Baltimore Law School in 2011. John was chosen to serve an internship with the Office of the Public Defender in Baltimore. He also worked for the Maryland State Legislature. 

John loved life. He enjoyed hiking, snowboarding, cooking, and loved dogs. He was an avid runner, running in many races and marathons where he was a champion for brain cancer research. John's motto, Inside All of Us Is Hope, was worn proudly in each race. Most of all, John loved relationships with his family and friends.

John is survived by his parents; Mary Milone “Buffy” Jordan (Sandy Jordan) of Arnold and Bruce P. Petrovick (Julie West Petrovick) of Wilmington, DE, his sister Caroline Jean Petrovick (Bethany Ellis) of Auburn, MA, his grandparents; Jean and Robert Milone of Severna Park, Alverta and Emil Petrovick of Mont Vernon, NH and Gracie and Rev. Joe West of Greensboro, NC, and his aunts and uncles Megan and Stephen Davis, John Milone, Laurie Ferguson, Deborah and Donald Horne, and Michael Petrovick. He is also survived by his cousins Greg and Samantha Horne, Stephen, Melinda, Gretchen, Courtney, Jack, Catherine, and Christopher Davis,and his niece Lucy Ellis Petrovick.

Friends are invited to a Memorial Visitation at Barranco & Sons, P.A. Severna Park Funeral Home on Thursday, May 3rd , from 2 to 4 and 6 to 9pm. A Mass of Christian Burial will be held at Our Lady of the Fields Church in Millersville on Friday at 11am. Interment will follow in the Church Cemetery.

In lieu of flowers Memorial Contributions may be made to:
Dr Quinones Research in memory of John Petrovick c/o Emily Ehehalt Associate Director of Development Johns Hopkins Neurosurgery 100 N. Charles Street Suite 431 Baltimore, MD 21201 or online at the QQuest website: http://www.active.com/donate/qquest Online condolences may be made at www.barrancofuneralhome.com

http://www.barrancofuneralhome.com/fh/obituaries/obituary.cfm?o_id=1466747&fh_id=12483

During radiation, John surpassed all expectations.   By the time he completed radiation on April 6, he was using the walker comfortably and beginning to be comfortable with just a cane. Last week he started to have back pain and could not get comfortable.  On April 12, he had a spine x-ray which showed no tumors or cysts.  They treated the back pain with heat, ice and Advil and it seemed to help. The past few weeks John's motor skills have regressed.  He is back in a wheelchair and is once again dependent.   Some of that could be attributed to after effects of radiation.  He also has some severe headaches, so they did an MRI on Saturday. The news was not what we wanted.  The disease is very aggressive and there are nodules throughout his brain and spine.  There are no surgical options. Monday after meeting with his oncologist, John was admitted to Hopkins. He is expected to be sent home tomorrow afternoon. This time in the hospital was for a "tune up" to help manage his pain. Prognosis is poor. We met with hospice today. John will be coming home tomorrow for hospice care at my mom and Sandy's. John has fought valiantly since the first tumor in 2008. He is still our hero.

Ringing the bell

Today will be the last radiation treatment I have forth time being. There is tradition at Hopkins of ringing a bell after your last treatment. Pretty excited. I will have about a month long break before I start the next stage of my treatment. It will include chemo. But today is about celebrating getting through stage one. One step at at a time

Coming to the end

I have just 8 treatments left. I'm not sure what will follow. But I'm trying to make as much progress as I can before I start the next stage. I am hoping to be walking without any assistive device in about 3 weeks. Progress is coming quickly now. So exciting to be making big steps now. Next Friday is my last day of radiation.

What am I doing

Tomorrow will mark the halfway point in my radiation treatments which is something to celebrate but on the other hand it is no where near the end of my fight. It occurred to me today that even if radiation does everything they hope it can it won't be enough to save my life. The best result radiation will bring is to prevent the tumor cells from growing back in the area that was just vacated. It is frustratiing to think how much discomfort I'm going through for what seems like a stalling tactic. But I have said numerous times throughout this that I'm not a doctor and so I shouldn't jump to conclusions. Just wanted to let everyone know that while I may not make it through all this it won't be for lack of effort on my part. But everyone needs to realize that I can do everything right and probably still won't win this fight.
At some point I am going to have to stop treatment and focus in getting to live my life. I'm not there yet. But this radiation process has me thinking about when that time will come.

I'm at home for about a week now. haven't been sleeping all that well still. Leg is in spasm pretty frequently. Plus I started radiation one of the side affects is that the brain swells and unfortunately Your skull does not expand therefore i get massive headaches. I am pretty tired all day. Because I do PT in the morning And radiation in the afternoon. I'm up for visitors but am just text before you come. I am at my aunts house in chartwell.

Escape

I am getting out today. Not headed back to my parents. There's construction going on there. Going to my aunts house in Severna Park. Visitors are welcome. Just call or text beforehand. Hoping to get some sleep. i havent had a solid nights sleep. In like 2 weeks. Looking forward to a regular bed. And beIng able youse the bathroom with out an escort.

Visitors

I am up for visitors. But I need to limit it. At the same time I'm not going to be very entertaining. In fact, I'm likely to fall asleep while you're here. Please call or text before coming I have full3 hours of therapy a day. My schedule tomorrow is 9 am10 am 2 pm &230 pm. I need thec down time in between sessions to rest. So eveningsvare the bestbtimes to visit again text me before coming. I don't know where to tell anyone to park I am in the John Burton pavilion terrace rehab unit room 39

Pathology

I got my pathology report back. Not good news I expected it to be just like last time a glioblastoma. Unfortunately, I was told this was a blend between glioblastoma and pnet. Pnet rumors are typically seen in pediatrics. This is something that puts me in a category all my own. That is never what you want to hear. Seemsbthe plan isvto do reradiation. Reradiation ion conjunction with. Another chemotherapy drug is the best opportunity to beat this. Not sure. What that will do for my release from rehab. B/c chemotherapy and radiation make me weaker so I'll likely regress. In therapy.

People keep asking about visiting. It's really hard to say when a good time is. I am having to learn how to walk again. As you can imagine this is exhausting and frustrating. 24 here I feel like I have to entertain. I don't want people to come just watch me sleep. That's what I end up doing for most of the day. because I don't really get to sleep at night. I cannot find resti in this hospital at all. I'm grumpy grouchy and I spend most of my time being upset. Not sure that makes for a good visit

Visits

Visitors are really tough right now. My days are full with therapy sessions and appointments so it is tough to nail down good times for visits. Therapy sessions are a trying experience because as anyone who has done them realizes it takes a tremendous physical and mental effort i need to make the most of them so visits during therapy sessions wont work to get then done. Maybe headed to rehab Facility tomorrow which would be a good thing because they have facilities to teach the skills I need to be able to go home. It won't be fun or easy Think of it like an intervention type experience they'll put me in the bad spots i could end up in by myself. And then teach me how to safely cope. My goal is to come out more confident and capable than I went in.

Huge day today! Walked to the end of the hall using a walker and with a pt/it standing behind me. But considering my leg was literally in responsive/paralyzed yesterday this was huge! Lots of work still to do. But at least I was given a reminder that it was possible today. Every day will not have this much rapid progress and I know I'll have frustrating days where're I make no progress. But today felt good. Once again it is not my job to decide what is possible before I try it. Still not sure when I'll be up for visitors. Partly because I expect to spend a ton of time in therapy.it is hard and exhausting. Tough. To say when I'll beawske and in my room

Please understand I love to have visitors. But I am still trying to read my t weap my head aroundthidwhole thing. My left leg does not work I need help do things that get to the bathroom. This is a tough pill to swallow. I know you just want to see me but it's hard for me to have people see me like this thy his may be hard to understand. Really had a lot of questions about why tegu we did surgery. Just had those answered tonight
I'm also going to ask that visitors talk with my sister before coming. I'll be in and out quite a bit this week for therapy

Moving on up

John was moved out of the neuro ICU this morning. He had a busy day in the NIC all day. He was moved again this evening to the neuro critical care unit. John's looking much better tonight, although he told me that he looks better than he feels. He's not quite ready for visitors yet. If you'd like to check in or visit in the next few days please text me 401-359-7727 to ask.

Madeit through surgery mostly intact. My left leg does
not work at all right now. I'm told it will come back. Very scary right now though. Because. No one knows any thing with 1000% certainty. Just gotta hope for the brst. Really exhausted and in pain right now. More posts to come soom

Out of Surgery

Dr. Q reports that John made it through surgery very well. The tumor caused a lot of swelling. They cleaned out as much as possible. Pathology will not come back for several weeks. We don't know much else because he is still in ICU and we haven't been able to see him yet. We'll do our best to keep the updates coming.

Please keep the prayers and good vibes coming John's way.

"don't count the days, make the days count"

Today was a reminder that it is not my job to jump to conclusions about what I'll be able to do from now on. Yesterday,my left hand and leg did not work. I had to have my father pull me in and out of bed and hold me up while I used the bathroom. Today I can get myself out of bed, granted it takes tremendous effort. I'm not sure why these changes occurred or if they're permanent. Point is I'll take them. This is just one day. Who knows what tomorrow will bring? I don't but I'm looking forward to it because it is a new day.
To those who're going to visit please just check in prior to coming. I don't want to have too many people all at once. You don't have to bring anything. But please no sweets, my blood sugar has been a bit high and there is a connection between high blood sugar and the occurrence of siezuress. Nuts, trail mix, fruits, veggies, all ok, no coffee drinks no sodas, no candy no cakes
I'm working on getting a conference room to watch the pats take the title so some people can come watch. It won't be ideal hd television and it will be in a hospital with a few unapologetic pats fans. Let me know if you might be interested. Space will be limited no pressure either way. I'll also have to head to bed right after because surgery is scheduledvfor 730 am Monday.

Surgery delayed

Just talked To dr. Q weaned we postponed surgery until 7 am Monday morning. I will be in the hospital until then. I'm not thrilled about that part. As I posted yesterday I had 3 seizures 2 which were terrifying my leg and arm were barely working yesterday. There has been significant improvement since yesterday. Dr. Q felt lthat my brain was likely in turmoil after those two events. He felt the meds I am now on in the hospital and the improvement signified that my brain was in a bit of turmoil and we would likely get a better result if we let things settle down. He is also just back from Peru and was trying to shuffle my operation today into a full OR schedule. I'd rather have the first op on Monday morning with a fresh dr Q then him scarmbling to get me a chance in a crowded OR after a week of travel.
Watching the pats take the title in the hospital is not ideal. But nothing is these days is ideal so I'll deal. I'm much more open to visitors now since my condition has improved. Just let me know before u decide to stop by so I can make sure I don't have too many at once. Treats except caffiene are welcome as well.I'm also not very entertaining

Never made surgery literally scariest day ever

I'm sitting in the hospital and I don't mind saying that today was the scariest day of all of this. I woke up this morning very confused about how to feel. For a long time I had centered a lot of hate and grief on the device I was forced to carry around. Then I started to get used to it. Then I realized I had made it my crutch. Any anxiety or problem was a product of the device. Not the tumor. Almost a bit of institutionalization. My goal had not become beating cancer but getting done with the device.
Before surgery I had a partial seizure and for the first time was not able to take my meds bc I was shaking too badly. My sister found me and helped me and the seizure subsided. 20 minutes later I got into the car to head to the hospital and had a severe seizure. I could barely breathe my hand and arm and leg were paralyzed. My jaw felt wired shut. Literally had a moment where I thought I might die. The best way to describe the fear combined with the helplessness to stop what is happening literally a nightmare that you can't get out of. we called an ambulance but were determined to make it to Hopkins for surgery. We knew an ambulance would take me to the closest medical center so I told them I would not go with them unless they took me to Hopkins. Well while trying to act tough I had another severe seizure and agreed to go wherever with them. Once again I my face arm and legs were frozen and I'm gasping for air. You keep thinking stay calm stop shaking catch your breath. Nothing works. They took me to Anne arundel medical center. Surgery is rescheduled for tomorrow at 2 hopefully we get it in without any surprises.
I'm now at Hopkins bayview. Tough for me to receive visitors because I find my situation a little embarrassing. Please understand In October I'm running 13 miles. Now I need someone to hold me up while I urinate and I have to physically move my left leg with my hand because it is lame

Things didn't go to plan to start the day. I had 2 serious seizures this morning and had to be transported by ambulance to aamc transferreto bay view surgery seems to be planned for tomorrow

updates

Unless I talked to you about it beforehand please do not text or call my phone looking for updates. I love my family but the waiting room is going to be a zoo with all of them there and My sister will be right in the middle of it. She also has a baby to take care of( and i don't mean me)
She will be updating the blog. She has more people to update than she can possibly deal with
with. She will update the blog as things happen. If there is no update then there is nothing has happened yet. No news can be the best news sometimes as well.
I'm not sure when I'll be up for visitors. I'm fairly certain I'll likely be in the hospital over the weekend. I know the surgery is supposed to relieve some of the symptoms. last time I was able to do so much before they anticipated. I am not in
shape that I was last time and I was not having as bad of a problem as i am this time. So it will probably take longer to get the
okay to go home. I'm not sure when I'll be up fir visitors either but probably not before saturday afternoon/evening. but check b4 coming

not doing well

My blog entries are getting shorter. This is because I'm actually dictating them now. My left arm left hand left leg are so bad that I really can't stand it to type anymore.
It should be understood this surgery should relieve some of the symptoms. But I am also risking a lot of things with this surgery. I may be in a wheelchair or have to use something else before I know it. I have decided that I should no longer be driving given my symptoms. This is not easy for me to accept that at 28 i am like a life alert commercial. I am not comfortable with how I appear in public right now.
i am slightly embarrassed about the fact that my legs do not work like I want them to. I have fallen over three
times in the last two days. And then I had trouble picking myself up. The activities that I can do right now are very limited.
This week will be spent in appointments and with family. Surgery has been scheduled for Thursday now. I believe there is a get together tomorrow at bill Bateman's. This will be the last opportunity really to see me before surgery. I am no longer capable of doing things on last minute notice. Please help me out and give me plenty of notice if you want to stop by or do anything.

The Situation/plan

The tumor has grown. No news there. I need to make it clear this is our plan. There are still a lot of risks and there is no guarantee this will work. We're pursuing our best options at this point. I am convinced this is the best course of action given the situation. The plan now is that Dr. Q will perform surgery next Friday. Surgery will not remove all the cancer cells, but will be used to reduce the symptoms and buy me the time i need to see what treatment may be effective.
After I heal from surgery. I will resume using the device from Boston in conjunction with a new chemotherapy drug called CCNU. CCNU has some side effects which will be difficult to tolerate. Eventually, we will add another drug called Avastin into the therapy regimen. Avastin is a drug which has had success in preventing swelling and growth with tumors like mine. We did not opt for it initially because the side effects, include an inability to have blood clot properly. Avastin could have prevented me from pursuing surgery and other options in a timely manner. This also why it will not be implemented immediately after surgery.
I should be out of the hospital tomorrow.

Breaking point

I had a seizure at my parent's house at around 5:30. Frankly I wish I had not told anyone because now I am in the hospital. I don't know why I have to be here and I don't know how long I'll be here. I am truly miserable. I hate it. I won't sleep well. Apparently I may have surgery next week, Dr. Q is out of town until thursday. I'm not sure what that means as far as my hospital stay and or date of surgery still have not gotten a definite answer on that.
I am really struggling with this: bad beds, worse food, general uncertainty about what is happening. I expect to know more in a couple days. I'll keep everyone posted.

MRI Results; It's just news

Got my MRI I results. They showed that there was significant tumor growth. I don't know exactly what that means. I don't know if that means it has happened faster than expected or if this has been pretty much as expected. The news that there is growth is not unexpected to me. As I said my left arm and leg are very uncoordinated and when symptoms pick up it's just naïve to think that nothing is wrong. So this is pretty much what I expected to hear. So I don't look at this as good news but just news. When we attached this device My Dr. said it may take some time before we knew if it was going to work. My doctors consulted when I started this with the understanding that things may get worse. They discussed what may be needed if that was the case. I don't know that we can say this therapy is not going to work based on this news. I'm not going to make guesses right now because I feel like that would really drive me crazy. I have to wait and hear what the smart people actually think. I should hear from my neurologist in Boston tomorrow, My oncologist early next week and from there we'll make a plan that I'll follow.

I am not taking it as good or bad news right now. Obviously I would have preferred to hear that there was no growth. I don't have a lot of answers right now. Still have to talk with my doctors about what we think the best treatment is. We will be in discussions next week about what we think the best course of action is. I'm not going to waste to guessing or speculating. I will keep pursuing treatments until they tell me I can't. There will be a next step I just don't know what that is right now.

Just so everyone understands, I will keep following and searching for treatments until they tell me I can't or my heart is no longer beating.

Problems

Tomorrow I have an MRI. I am not a doctor but this is not going to be good news. I am likely to find out that my tumor has grown despite this treatment. This is not me quitting. Tomorrow I'll find out what I need to do next to keep on going. I think It would just be naïve to think that nothing is going on considering my symptoms. If you feel the need to pray or tell me that you're going to pray for me that I am given the guidance to make a good decision about what to do next. This is not good news. Tomorrow a tech will likely see that my tumor has grown significantly. I won't get all the answers tomorrow because it will take time for my doctors to review and make decisions. It would be foolish to think that everything is just going to be fine. I will have a lot of work to do. These may be the best days I have left right now. But I'll have days left.

Tense Times

Big problem in dealing with all of this is my level of anxiety and level of patience is thin. I am doing my best to try to deal with it. Obviously, I have a lot going on. My biggest concerns are in going through all of this is that in dealing with all of this I will lose track of if who I am. That is what weighs on my mind the most. I feel that I am changing from the person that all of you have decided to support and it scares me.
There are multiple levels to this fight. There are things about this fight when I am on my own. On another level I most definitely am not alone. I have unbelievable friends and family supporting me.
My anxiety and patience issues lead me to lash out at times. The biggest problem with that is the people who are most often on the receiving end are the ones I interact with the most. This means these are the people who likely trying to help me the most. Which makes me even more upset that I am having problems controlling myself. Please accept my apology in advance of any slights.
Just so you understand why I get so tense I want to try to give everyone an idea of what I am thinking about.
My left hand and left leg are getting less and less coordinated on almost a daily basis. I find I am able to do less and less each week. My real concern is about how long I’ll be able to do anything with my left side.
With the electrodes on my head I am not supposed to sweat because it causes them to lose their grip and become painful and ineffective. This means I can only exercise when I change them out, which is about 3 times a week. I can't change them myself so I have to be close to someone who has watched them changed. For someone who was running/working out 5-6 times a week it is a big adjustment.
The meds that I am on to control the side effects of the tumor increase my level of anxiety, and also cause me to be hungry beyond belief. Between not working out and always being hungry I have put on quite a bit of weight. The weight, combined with the device make me very uncomfortable with myself in public. I am also frustrated with my inability to do things with this new big belly I am carrying around.
I don’t sleep well at all. I have only slept deep enough to have a dream once since I got this device attached.
I went to the Patriots and Ravens game this weekend which was a really fun but taxing experience.
When I go into public or do activities it takes a lot of planning. It takes me about 30- 40 minutes of planning and prep to be able to leave the house comfortably. I still have not come up with a quick explanation for what it is I am carrying around for when strangers ask. May seem unnecessary, but people ask and it sucks to not have something to say because I have always had an answer for everything. I have actually never really given as much thought about what strangers think and that bothers me as well.
As I you can see I have a lot on my mind and I am trying to deal but it is no easy task. Please give me what I can't right now, patience.

The Situation

I have probably not been as informative about what is going on up here with this therapy and in general as I should have been. This therapy involves me using a device made by a company called Novocure. Novocure is an oncology research company. They research and explore oncology options beyond chemo therapy, radiation, and surgery.
My tumor has grown faster than we first anticipated. This is why I had been having headaches and seizures before coming up here. The symptoms are being controlled right now by anti-seizure meds and steroids. Controlled, but not stopped. My left hand/arm is less coordinated and feels numb or asleep at certain parts of the day.
The therapy I am pursuing is what is called TTF. I don’t fully understand the science behind it myself, it requires me to wear sticky electrode patches on my scalp, which need to be undone and reattached every 2-3 days. These patches are attached to a machine which generates the TTF(tumor treatment field). The device weighs about 5 lbs. and runs on battery packs which weigh another 5 pounds. It is very conspicuous, and cumbersome, and bothersome. The battery packs last for about 3 hours at a time.
In essence I am carrying around a 10 pound device which has 3-4 hrs of battery life in a purse that holds nothing besides the device.
The electrodes cause skin irritation, and on occasion cause a burning sensation on my scalp.
I have a braid of cables, which hangs, off my head and attaches to the device, basically like the movie avatar. The goal for treatment is to have the device running for 80% of the time it is attached. I can plug the device into a wall charger but then I limited in how far from an outlet I can walk. More treatment is better but 80% is what the company would really like to see.
At this point I don’t know anything. I don’t know that this will work. The only certainty is that if I don’t do anything this tumor will kill me.; one time table said within 6 months. I have high hopes this will work. But if we knew this worked it would have been what we did first. I may have to tolerate this device or another form of treatment forever. It may take some time to make a determination of whether this therapy is effective. In the mean time the tumor will likely grow and if the symptoms get worse then another surgery may become necessary. Surgery was not the option initially because, it limits the other therapies I can pursue. In the time it takes to heal from surgery the tumor could grow back and I would be in the same spot as I am now but have risked another brain surgery. There may come a day when I’m “in the clear” but to think that way may just be wishful thinking
At this point I need to have everyone understand what I have come to understand these last few weeks: I will probably spend the rest of my life fighting against cancer. Not sure how long that will be but that’s the situation. This is literally a fight for my life and I won’t be able to look myself in the mirror if I can’t tell myself I tried everything that seemed reasonable. Not sure how long that will be but that is the situation. This will not be an easy or convenient life, but it is what I have to do. Concepts of easy or convenient left a long time ago. My activities and energy will be devoted to trying to beat this.
I’m telling all of you this because I need you to understand that I’m going to be going through a lot of changes as a person. I’m anxious, upset, and impatient. I’m not happy with the changes that I’ll have to make because I feel like, in some way, they’re going to change part of me. Although I may have been awkward or stood out a little before, the truth is I considered my ability to be comfortable in my own skin one of my best traits. That is no longer the case.
Doing activities of any kind will be a big deal for me, because I’m not sure what I can do and the planning and effort it takes just to leave the house are fairly significant at this point. Fighting like this will take it’s toll on my ability to be the friend that I would really like to be.
I know all of you have told me that I don’t owe you anything for your support. Unfortunately, that’s not the truth. I promised my friends and my family that I would never quit this fight and I won’t.

This may sound crazy but Told myself this when I woke up this morning

Dear Cancer,
I know what you want. I know you want me to curl up and cry and just give up. There will be days when I do that, but they will be limited. For each day I have where I curl up and cry I’ll have another 2 days where I am rejuvenated to beat you.

You snuck into my life and have tried to make yourself part of it. You’re not my friend, you’re not my family, you do not get to
decide how I live my life. You’re a pest, a nuisance, and an unwelcome tenant.

The problem for you is this is not your decision. This is still my body. No matter how much you might like to disagree. I thought I made this clear to you twice before. You can keep coming back and I’ll keep telling you to go fuck yourself. You can make it as hard as you want, but the harder you try, the harder I’ll fight.

I’m not gonna do the job for you. You’ll have to literally kill me before this is over, and you might. But the lines have been drawn and I’m gonna keep crossing the ones you draw until I can’t.
This is your 3rd eviction notice.

Your host,
John Petrovick

Worse than I imagined

This device has been awful today. I am sure iwill make adjustments but right now this is horrendous. I cannot imagine it being worse unless it actually caused some sort of physical pain. It is incredibly annoying. I have an array of electrodes on my head that is powered by a battery pack which is about a 1 ft square package. It weighs about 10 lbs. And has a life of about 3 hrs. I have 3 backup batteries which sit on a charger that weighs about 20 lbs. I can plug into a standard 3 prong outlet but I can't get far from the outlet. The array makes my head warm and I have to instantly lay attention for low battery alerts or disconnection alerts.
As is plainly obvious I am less than thrilled about this. I have no idea how I'll deal with this. Irate the thought of this and n it may not even work. If it does work. I'll have to have it going 80% of the time.
Mean time the coordination in my left hand is not getting better, I'm having trouble seeing as far as I once did and I'm not sleeping well.
2012 started off on an amazing note. My friends sending ne to the patriots game was awesome. As high as I was from that I'm feeling really low right now. I have the terrible feeling of having limited time left and not wanting to do anything all at once because I have this device now. It makes for high anxiety.
Seriously questioning whether this was worth it or not. If it doesn't help than it is an incredible burden that has wasted valuable time. Just feeling very confused.