Control

I have written several post since the last one but I have not published any of them. My emotions are running crazy. I have been putting off posting because its been a roller coaster ride of cancer in the past few weeks. Truthfully, I really don't know what to post because I don't understand much anymore. Just when I think I have this cancer life under control I am hit with another wall to climb over.

I had a new set of scans about a week ago and the results were so so. The miracle drug that I have been taking has not shrunk any of the tumors. Some are stable but new ones are popping up faster then I would like them to. After speaking with my liver oncologist after the scans I left his office feeling quite defeated and angry. He, on the other hand, keeps telling me that I am a miracle and I need to remember that I have had a whole year longer then what was expected. I am frustrated because I am doing everything I can do, and looking for more, to fight this fight but keep getting punched down over and over again. I am tired of losing this battle. I am also tired of pretending that everything is going to be alright when deep down I know that the only answer right now for this carcinoid cancer is to slow the process done. I want so badly to just once go into my doctors office and hear that I am in remission.

I also feel this enormous desire to keep everyone here at home positive and optimistic. I need to keep everything together and tell everyone....including myself...that I will get through this again. I must of said 100 times or more to Mark in the past 2 weeks to stop worrying about something we cannot control only to find myself up all hours of the night worrying for him. I feel this huge pressure to be strong for everyone while I continue my life like I don't have this monster invading every one of my organs. 99% of the time I believe and have faith that I will be here for my children and to see them graduate from high school, college, get married and have children of their own. However, at times there is that 1% that is so hard to overcome at times.

Today I got a call from my oncologist office and they told me that I need further tests and risky surgery as soon as possible. After I hung up the phone that 1% kicked in and I fell apart. But I had no one to fall apart too because I am the strong one and I have to keep my family thinking that this news is just a little bump in the road. As I started to tell Mark the water down filtered version of my conversation with the nurse I could tell that it meant him freaking out. As much as I appreciate his need to get upset and angry I really wanted it to be my turn just this once. My turn to scream and cry. My turn to feel sorry for myself and become bitter. Instead as I tried to communicate my frustrated I end up listening to his.

I knew that I had to clear my head so I snuck away for a walk. As I was walking I tried to figure things out and plan my next course of action. I kept asking myself why am I freaking out? Why do I feel like I am losing control of this battle? Why am I so frustrated when I knew this day and many worse days would come? The answer came quick. I don't know if it was God slapping me in the face or me just thinking straight but I realized that I am not suppose to be in control. He is in control. I need to let go of the wheel and let Him drive. I have to put my trust in God and give this up to Him. The answers will come if I open my heart and loose my need to control.

I lost my way for awhile. I needed to take control of something I have no control over.

On Tuesday I will see my main oncologist to discuss our new findings. We will lay out a game plan and I will proceed with all my heart again. In the meantime, I am going to enjoy my Easter Holiday with my family and hug my boys every chance I get. I know that I can not control the outcome of this disease but I control how I handle the outcome.

Sunny

Daffodal

Sunday was such a glorious day here in Pittsburgh. Of course that means the boys and a large group of their friends will spend most of the day outside. After spending a few hours at a photo shoot I came home to an empty house with the remains of several messy boys left behind. Drink glasses half full, about a dozen of Popsicles wrappers and sticks scatter about the kitchen counter and an empty fridge that was full before I left that morning was proof that they still lived there but only entered the house to refuel theirs and their buddies bellies. I rushed home because I was expected to be greeted by my four favorite boys waiting for me to do something fun with them. I quickly realized that they are now teenagers and really they did not even realizes I was gone for hours.

As I was cleaning up the mess in the kitchen and feeling very used, I heard my cell phone buzzing that a text just came through. Needing an excuse to not continue I grab my phone to check out what it said. I looked down to see Fav yung son on the name of who the text was sent. That stands for "my favorite youngest son" which is what I jokingly call him at times. I open the text only to see it was a picture of a daffodil from my Nolan and text written above the picture that said, "with the gang and saw this in someone's yard and thought of you. I cannot pick it because I don't want anyone to think I'm weird. I hope you like to just look at it". I must say my heart insistently melted.

I have to wonder if cancer has made Nolan as thoughtful as he was on Sunday? Has our journey soften my boys? Or would they have become this sensitive and loving even if we had a normal life? I truly believe they have become who they are because of our situation. Believe me when I tell you this surprise does not happen often, but they seem to come at such perfect times. I hate cancer and I hate what it does to others and families. I believe that cancer is somehow a form of the devil. But I also know that we have become different people for the better because of being struck with this daemon.

About an hour after receiving the text the door flew open and in come a group of about twelve boys ranging from the ages of 11 to 15 to hit our basement to watch the NCAA march madness with Mark. I cringed because I knew this meant mess number two and bad odors entering my freshly cleaned house. I handed each one a bottle of water and warned Mark they were entering the "man cave". At the end of the stampede was Nolan holding that beautiful daffodil he texted me a picture of. Once again I felt my heart melting like candle wax. He handed me the flower and told me to hurry and put it water because he picked it right after he texted me. He claimed that Austen and Logan told him to. I gave him a huge hug and just held him. He then pulled away when he heard someone yelling for him to hurry up because Pitt was on. As he ran downstairs to join the rest of "THE GANG" he turned to me and demanded, "chips mom". Once again I knew that despite my cancer I have a truly perfect life.

Sunny

What to say????

After reading Mark's blog from the other day I am speechless. I did not know how wonderful his memories are of Basel, Switzerland. I never like to talk about it with him because I really thought that it was a time he would not want to rehash. He seemed so scared and helpless when I was undergoing these experimental treatments. I remember his anxiety as we boarding the plain from Phili to Germany. I was exhausted, in pain and sick to my stomach yet I was so worried he was going to have a complet break down. At least that is what I thought at the time, only to learn just the other day he in awe of me. When the subject of our adventure comes up I always see his eyes start to water up so I immediately change the subject. I thought it was because of sadness and fear but now realize those eyes were full of love. Unfortunately, I never let myself see our trips through his eyes so I am so glad he wrote the last post.



He is correct when he says I don't like to remember our trips or the treatments that I underwent while in Basel. I do talk about our experiences but only to other carcinoid patients that call me for information and want to know what it is all about. But I don't like to relive it with anyone else. I don't see myself back then like Mark sees me. I see myself as a sick, insecure, fragile person. I was doing what I needed to do to get through a very hard time. I was really just trying to make the best of a very hard situation. Actually, when I think about it I was truly searching for some happiness and peace. That is why I was dragging Mark all over the Alps while vomiting in several plastic bags. I needed to find any good in the situation we were in. Never did I realizes that Mark was just satisfied being with me.

Mark wrote about my photographs. I have not looked at them since we got back and I loaded them in the computer. I am thinking that maybe when I am ready I will sit down with Mark and we will enjoy our memories together. After all, I am alive one year longer then any doctor here in the United States predicted.

Sunny

Time-Our Most Precious Commodity

Yesterday marked the one year anniversary of Sunny's second treatment in Basel. Not the exact date mind you, but the Monday preceding March Madness 2009 we were in Switzerland , Sunny confined to her room, quarantined like a Chernobyl victim , and I, holed up in the room or the bar at the HiltonBasel. To this day,she is not one who looks back on the two trips at all other to acknowledge that they certainly were worth the efforts, as the Iridium 90 by all accounts has slowed the pace of the cancer. She is not one who looks back on those two trips as anything other than a necessary step to stay alive, not a positive experience, nor one that she cares to talk about, be reminded of, or care to recall. It is not surprising that when I pointed out what Monday was and offered to do a blog , she was more than happy to let me reflect on what the last year has meant, and in order to do so , obviously revisit our time in Basel.

As I write this I wonder if she is going to be comfortable even having this blog published. Basel was a step along the cancer journey and I can understand her uneasiness in recollecting or reflecting back on the two treatments there, and more specifically the anniversary of her most recent one. The same emotions stir inside when she goes back to Presby/Montifiore here in Pittsburgh and is faced with the memories of the chemo-immobilizations preformed there (and by coincidence what could ultimately be our final visit with the liver specialist Dr. Gamblin was yesterday , but more on that to come....)or the same emotions stir when she walks by the kiosk at Hillman. For Dr. Christie who performed the lung surgery years ago and by coincidence is directly across the hall from Dr. Friedland's team and offices....the emotions are strong....we have talked about them....we share them....of course understandably hers are infinitely more intense than mine...these doctors all did their jobs...the lung surgery was deemed a success, the liver treatments as of the scan done just yesterday continue to be what we are all looking at and the Octreotide Scans show that Basel did what it was supposed to do. That is all irrelevant....when you have to look around the waiting room and see the faces of cancer, of advanced cancer staring back....you get angry....then you get angry for being insensitive....you are angry for letting yourself get angry...you wonder why your wife...or in Sunny's case why me? The memories come flooding back and if you let them they can overwhelm.

I have no choice but to realize that even though these memories of Basel may be difficult to revisit, that Sunny is still by my side as I reflect. We have been blessed with a year to date since that scary Swiss treatment and we all know that was never a guarantee. Even AIG wouldn't touch that one. So when I title this "short" little entry "Time-Our Most Precious Commodity", I do so not to repeat a common cliche of the late 20th century, but as a testament to my wife....and to how Sunny chooses to treat each day. She inspires me everyday and as I write this and bring back some of the moments of our time together in Basel last March, I do so not to stir up unpleasant times, but to remember how even then whether she wants to admit it or not she is a unique fighter blessed with an Irish blend of PMA and unfailing tenacity that quite frankly, if the Pittsburgh Pirates could tap into a tenth of, Pittsburgh would be truly be the City of Champions. She doesn't make excuses or look for reasons to procrastinate (although as she will attest to I try to give her outs or force rest) she grabs each day as if it were some kind of steroided beefed up super bull, yanking that big boy's horns until it squeals in defeat. She will not get beat by the clock. She will not get cheated by time. So I can share the memories of our second trip to Basel with fondness because we were together, we were close, and she was to simply put it....Sunny.

Sunny of course brought her camera. I think she knew that even though the treatment was torture that taking pictures would be a distraction. Knowing how much I love to pose for the paparazzi, she had focused on the architecture of the historic city, the people , the river, and had taken a slew of great pictures at one of the better museums during our first trip. (I have to throw out a big props to our good friend Peter, who drove down from Holland on both occasions and without whom, we would have stood out even more than we did as touristy Americans...his insight during the first trip helped us to at least not feel intimidated by the cultural differences during our second visit) But what Sunny had really taken upon herself was to capture pictures of the fronts of buildings...in particular doorways...doors...windows....gates etc...most of them were centuries old and all of them were much more colorful as compared to a typical entrance way here in the states. She was determined to put all of these Switz facades into a book that I kidded would rival Kramer's Coffee Table Book about coffee tables. She was relentless. She actually scaled a five hundred year old wall to peep over bushes to take one and as we marched through cobblestone streets on Saturday before her second treatment she must have taken hundreds of pictures of doors....Jim Morrison wasn't in as many Doors pictures as Sunny shot that afternoon as the sun dropped behind the Alps.

Those of you who read this and see her, please ask her to share with you the "Door Pics" from Basel. She hasn't looked at them since she has been back...but let me tell you they were fantastic. As I chased her through narrow twisting cobblestone streets, my feet hurting (Damn Euro trash hip shoes) and the hunger pains kicked in as our quest for a smoke free, good eats, not to crowded on a Saturday night search continued....she never stopped shooting. She was amazing. I was ready to call it a night. We had just flown from Pittsburgh to DC to Germany to Switzerland, grabbed maybe six hours of sleep, her bones in serious pain, and she wouldn't stop. Time. She kept saying she would have time to rest when she was dead. I would have chuckled, but I was too busy wheezin and geezin chasing her through those Basel Blvds and to be honest I never felt more connected with her...more in tune with what was driving her to press on.

Time. The second trip to Basel was the closest I felt to Sunny since her diagnosis. The fear of the unknown was behind us, the only ones we had to count on were the two of us. It is strange to even write this but it truly was an unbelievable privilege to know that it was just Sunny and I taking this step...of course I don't want in any means to dismiss the pain or emotions of the treatment, I can only comment that the pain for the liver treatments here was worse. At least her appearance post treatment back in da burgh was worse. I just know that we all have one timekeeper in life and he chose to have Sunny and I be in Basel...just the two of us....no other family or friends...(although I felt the prayers)...not our kids, not our intermittent cell phones or pain in the ass wireless Hilton Internet service....it was us...Rickki Lake, Sally Jesse Raphael, Judge Judy, some wacko G5 protesters in London, Nick Nolte and Eddie Murphy, Clint Eastwood, and lots of bar nuts, free lobby apples, stinky ass French cheese and those wonderful Salsa Chips from Papa J's Bistro.

Last St Patricks day my wife was in a nuclear medicine ward at Hospitaal Basell..Peter and I , not able to see Sunny for 24 hours wandered through that Irish haven of Basel and actually passed the evening drinking green beer and eating "fresh Swiss sushi". Not quite Market Square and Ms. Irish Smiling Eyes. The 17th of March was just another day over there, as was March Madness...and as my week went along I pretended to care about the brackets I had filled in via the Internet Sunday night...I tried to implore my three boys to fill theirs out and email them back home....Sunny rested ten feet from me....did I realize how special TIME was with my three rug rats. I have since mentioned on numerous occasions that we should take the boys the next time...she wants no part of it...I might as well as have invited the boys to visit their mother back in the 80's ....big hair...leg warmers...neon bracelets and all.

On Friday, our last day alone together in Basel before the long trek home, I wasn't expecting much more than a quick trolley ride to one of the museums we hadn't yet visited. It was 50 degrees F....I'm sorry, it was like 10 degrees Celsuis officially and as I put my shorts on I asked Sunny what she wanted to do....she said lets tackle the zoo. Now mind you, I am all about skipping museums when possible, but it was blustery, she had just been nuked three days prior...her blood count was low enough that if a monkey farted in her general area I was going to have to punch the monkey first and then take her to the Swiss ER...

TIME. I remember to this day what she said next. "I feel bad you have to be inside all of this time, lets do something fun...how about the zoo." It was at this point I realized how nuts my wife really is. In a goodhearted way. But nuts nonetheless. TIME. We grabbed her camera and the Camcorder and left the comforts of the Hilton Basel. We hopped a train that was new, we walked, we walked and then ...there we were....Zoolistengher Gardener....the f$#%#$in Zoo....For those of you who personally know Sunny I can only tell you that no matter she may claim now about her time there...she was in heaven....Pictures of swans, hog sex, hippos in their native setting....leopards mooning us....little Swiss kids running from the big American who didn't care for their little school ground song.....Loose mice in the reptile exhibit....we laughed and laughed, and never once did she complain. She had just got nuked, and we were walking through three and a half miles of odors and animal shit without complaint. I have never been to the Pittsburgh zoo with just my wife. I live 5 miles as the crow flies from it. Its world famous. We take the kids all of the time. My favorite zoo is now in Switzerland.

I hope that none of you have to go through the battle that Sunny has...but if you do , I pray you relish the TIME with each other....don't spend it frivolously, you can never get a refund....so pray....fight the right fight..and remember your life doesn't have a DVR...so be selfish with your time..cancer or not....TIME doesn't play favorites..so just don't take it for granted..

Please keep us in your prayers...huck Sunny for those "door" pictures and I look forward to reaching out to you all the next time Sunny gives me the OK.

Mark

Yesterday I received my treatment for my bone tumor. The hunt for a vein was easy.....first stick. They slowed down the processes into the vein so that the vein would not clot or collapse like has happened times in the past. It was such a relief that everything went so smoothly.

I felt exhausted but pretty good when I got home. Mark did the evening activities with boys while I stayed home and rested. I felt really good considering I had poison running through me. Then this morning I woke up to get the kids off to school and I could not move. It literally felt like my bones where frozen. My body is aching from head to toes. All I can think is the poison eating away at every tumor.

So today will a day of rest.

Sunny

I received an email from my niece-in-law (nephew's wife) if that is a word. I is so beautiful and if I wrote it myself I could not say it any better. Today I have to go to Hillman Cancer Center to receive a treatment. I get so anxious when it's the day for this particular treatment because I don't want to go through the painful experience of vain hunting. This email came at the most perfect time because it really helped me to realize why I am doing all this and who I am doing it all for.

I
Believe...
That
just because two people argue,
It
doesn't mean they don't love each other.
And just because they don't
argue,
It doesn't mean
they do love each other.

I
Believe...
That
we don't have to change friends if
We understand that friends
change.

I
Believe....
That no matter how good a friend
is,
they're going to hurt
you every once in a while
and you must forgive them for
that.

I
Believe...
That true friendship continues to
grow,
even over the
longest distance.
Same
goes for true love.

I
Believe...
That you can do something in an
instant
That will give
you heartache for life.

I
Believe....
That it's taking me a long
time
To become the person
I want to be.

I

Believe...
That you should always leave loved ones
with
Loving words. It may
be the last time you see them.

I
Believe....
That you can keep going long after you think you
can't.

I
Believe....
That we are responsible for
what
We do, no matter how
we feel.

I
Believe...
That either you control your attitude or it controls
you.

I
Believe...
That heroes are the people who do what has to be done
when it needs
to be done,
regardless of the consequences.

I
Believe....
That my best friend and I can do anything or nothing
and have the best time.

I
Believe....
That sometimes the people you expect to kick you when
you're down
will be the
ones to help you get back up.

I
Believe...
That sometimes when I'm
angry
I have the right to
be angry,
But that
doesn't give me the right to be cruel.

I
Believe....
That maturity has more to do with what types of
experiences you've had
And what you've learned from them and less to do
with how many
birthdays you've
celebrated.

I
Believe....
That it isn't always
enough,
to be forgiven by
others.
Sometimes,
you have to learn to forgive yourself..

I
Believe...
That no matter how bad your heart is
broken
the
world doesn't stop for your grief.

I

Believe....

That our background and

circumstances
may have
influenced who we are,
But, we are responsible for who we
become.

I
Believe...
That you shouldn't be so eager to
find
Out a secret. It
could change your life Forever.

I
Believe....
Two people can look at the exact
same
Thing and see
something totally different.

I
Believe....
That your life can be changed in a matter
of
Hours by people who
don't even know you.

I
Believe...
That even when you think you have no more to
give,
When a friend cries
out to you -
you will
find the strength to help.

I
Believe...
That credentials on the
wall
do not make you a
decent human
being.

I
Believe...
That the people you care about most in
life
are taken from you
too soon.

I decided to print out two copies of the above and hang one on my boys bathroom mirror for them to read and put one in my Bible. Thanks Dawn for the email.

Sunny