I figured I might try today's blog before the crack of two or three AM over here on the other side of the pond. To everyone who has continued to follow Sunny's journey you will be happy to hear that today went well. I am not claiming she was pain free, in fact from it, but the pain she experienced for the most part was closer to the ilk she experiences at home as opposed to the hell she went through Monday night and Tuesday morning. In fact when I left after dinner tonight(more on that inna bit) she had been off of the pain pump for several hours. I have seen prayers answered this week.
Our day began with a series of scans this morning at 0800 down in Zimmer-01...one floor above the treatment dungeon one floor below ground. Martin deftly rolled her wheelchair and IV cart through one sliding glass door and the last and presto we were in the scan area waiting room. Er I mean waiting hall. Clean efficient and friendly, stocked with community bottled waters to pour into cups, abundant with magazines though English nein. When they say 0800 they mean 0800 and Sunny was back in the five minute body scan quick transition to the 20 minutes CT scan. She did great and we look forward to results. She originally was supposed to check out of Der hospitaal this morning but we already discussed it would be better to leave Thursday morning so we took red Lift back to Nuklear Medizin Zimmer 4-2.
The afternoon was spent catching up on some much needed rest. She has physically been through a lot this week and mentally it has been challenging to stay the least. I think of the scripture where we will be tested in order to get stronger...that tribulation brings perseverance which develops character leading to hope thorough faith. Sunny has certainly had a chance to build perserverance which is why her faith is so strong. I know that thorns on roses become buds and then flower...much like the "thorns" of our daily hurt if they don't hurt will eventually blossom into something spectacular. Here's one to living life with a vase full of a beautiful bouquet and not life with a thorny overgrown weed.
Dinner. I want to get back to that subject because it was worthy of it's own blog on how not to sustain a hospitaal patient on the road to recovery. As you recall, yesterday we ventured into the exciting culinary world of Swiss/Mex cuisine. Tonight Sunny was treated to the finest version of tatertot/crab cake/mystery dry baked ball surprise that resembled burnt browned bouncy balls than anything I would feed even to our dog...and some of you may know Oscar is not real choosy when it comes to his palate. They were served with a baked squash, or at least we think it was. It looked more like a baked potato with a sunburn. Now keep in mind one of the side effects of this treatment is acid indigestion and nausea. I mention that because they complimented the entrees with Mediterranean soup which looked like spicy minestrone and a side salad with zesty Italian two hard bran rolls(?) and an even harder pear. As Shaggy would say...zoinks. Time for a scooby snack.
So she got to eat pretzel sticks and und bread stick and almond biscotti from starbucks and banana and apple all from COOP...you remember from 2009 thats the local Giant Eagle. Got to learn the meaning of another German or French sign checking out at COOP...apparently Binette and something else means Please go to other lane....you know the equivalent of "lane closed" or "I am going on my break stupid amerikan". Ah well travel and learn. I couldn't say anything if I could speak the language because Der Polizia were buying their coffee and donuts in line next to me before getting back on their bike patrols.
We just spoke and she is resting comfortably again so I want to take the time to share a few other little things Sunny and I have picked up on since returning here to Basel...
-All the taxis, police cars, firetrucks, ambulenzas, and sanititaation trucks are all Mercedes or Beamers...
-A Big Mac can cost 10 us dollars...
-Doctors can wear jeans when making rounds as long as they head up the department...
-Ice is frowned upon because even they are mere miles away from some of the freshest water and coldest Alp ranges I n the world refrigeeration is an issue....
-Smoking is not frowned upon...in fact even they put aborted fetus pictures on packs apparently...I even saw a poodle light up...
-Swiss cheese is not a room freshened...in fact it is quite the opposite....
-Although all traffic stops to let pedestrians cross, everyone including 90 year old babushka sporting grandmas will knock an American over to get by on tram...
-Trains and buses have stops with signs where they use sensors en route to accurately predict the exact moment of arrival...at PAT in Pittsburgh they use they same concept only it's on paper and it's to tell you what exact days your bus runs...
-These are a serious not often smiling bunch over here...probably like a sports bar in Baltimore last Sunday afternoon...
-They don't know what Tebowed is...but they have heard of Mitt....
-The occupy Basel crowd wears cheap Swiss watches costing under 2000francs($2500)...damn 1%...
Ah well I should save some for later in the week. Sunny fully intends to pick back up tomorrow so in case this is bye bye I want to say again thanks for following her story, for praying, and for helping in anyway you can. We are truly blessed.
Mark
PS WQED 360. THURSDAY 1/26 @ 7:30 PM. SUNNYVISION BEGINS. please watch and/ or record and enjoy.
SUNNY CARNEY After a courageous 10 year fight battling Carcinoid Cancer, Sunny Carney, of Plum, passed peacefully on Saturday, November 3. She was married to her devoted husband, Mark; and was a loving mother to Austen, Logan and Nolan; daughter of Patricia Jennings and the late James J. Jennings; daughter-in-law of Dale and Dottie Carney; sister of Judy Phillips (Ray Jr.), Lynn Pesta (Teddy), Michael Jennings (Vicki Lynn), James Jennings (Sue), Joseph Jennings (Elizabeth), Sheila Fortes (Jim); sister-in-law of Craig Carney (Julia). She is also survived by numerous aunts, uncles, cousins, nieces, and nephews, and was a true friend and inspiration to many.
In addition to being an inspiration to family and friends Sunny inspired carcinoid cancer patients across the globe through her blog, and then her book "The Sunny Side of Cancer. She spoke at numerous cancer events locally sharing stories of her journey which led her from Basel, Switzerland to all of the top Carcinoid Cancer specialists here in the states. She was an advocate for better diagnosis of the disease and for insurance coverage of treatments. She fought with grace and dignity, never letting the pain inside challenge her faith or diminish her love for life.
Memorials may be made to "Carney Family Fund", c/o S&T Bank, 2190 Hulton Road, Verona, PA 15147.
Friends received Monday 7-9 p.m. and Tuesday 3-8 p.m. at Unity Community Church, 215 Unity Center Road, Plum, PA 15239.
Funeral Services will be held on Wednesday at 11 a.m. in Unity Community Church with Rev. Frank Deluce officiating. Arrangements entrusted to CHARLES W. TRENZ FUNERAL HOME, INC.
VIEW GUEST BOOK Published in Pittsburgh Post-Gazette
Wednesday, January 25, 2012
Tuesday, January 24, 2012
Sunnyvision
FYI.
On this Thursday evening at7:30PM on WQED 360 The Carney family led by our very own Sunny will make their reality TV debut. actually it's a documentary but it was well put together and it once again gives insight into Sunny's ongoing fight with Carcinoid Cancer and more importantly how she chooses to not let it define who she is. So make some popcorn...set your DVR's and let's make this the highest rated show on Channel 13 since Mister Roger's last episode.
On this Thursday evening at7:30PM on WQED 360 The Carney family led by our very own Sunny will make their reality TV debut. actually it's a documentary but it was well put together and it once again gives insight into Sunny's ongoing fight with Carcinoid Cancer and more importantly how she chooses to not let it define who she is. So make some popcorn...set your DVR's and let's make this the highest rated show on Channel 13 since Mister Roger's last episode.
Not So Terrific Tuesday
Well today began early this morning in a world of pain for Sunny. The doctor had told her that because she had lost a lot of weight that there was a high likelihood of intense pain from the injection. They sort of hinted to us that there was the option of rescheduling...obviously they don't know Sunny too well. Overnight the pain was excruciating and we communicated via text and cell phones because hospitaal has strict rules about when guests have to go. When I got there a little after seven she was literally in childbearing delivery room pain for those of you that can relate and it's a helpless feeling to not be do anything. she asked me to reach out to our pastor at about 3:00 AM yunzer time to start a bigtime prayer chain. Can't begin to tell you how it felt to get Pastors text back immediately that the praying was already underway.
The good dr mars called for Der pain team...and when they came they listened asked questions and determined that the best course was to do exactly what has worked for back home after immobilzations. I am glad to report that although the scans had to be pushed back to Wednesday, that she was able to catch up on some much needed rest as the afternoon and evening passed by. The plan is to still return to the states on Saturday.
It was physically hard for her and mentally draining for both of us but I can tell you she never completely lost her sense of Sunny. She managed to mention to every nurse and doctor that the tv goes only to two stations after nine and one was a "porn" version of MTV and the other was a continuous loop of Weakest link reruns. (she joked she knew all of the answers). By lunch she was able to get up and shuffle over to her table and eat a couple of the shrimp, although she left the black noodles alone. Actually when I saw it I thought of Indiana Jones in Temple of Doom and wondered where the heck the monkey brains were. I went out to Starbucks and got her a Rasberry Cheesecake which she ate entirely with her hospital gelati.
I can only tell you that the chilled squid surprise for lunch was actually the highlight of the food portion of her day. For dinner she was served two enchilada looking things oozing in some type of hot sauce garnished with a whole red chili pepper. Honestly I can't make this stuff up. I guess the Swiss Miss was replaced in the kitchen by Ricardo Ricola, mad pursuit of that well known food genre Swiss/Mex. Holy crap. I went out and scored us two Big Mac meals "take away" for a mere 28 US dollars. Forgot they don't but ice in the Coke light cups and if you don't know what happens when holding a McD bag with two drinks no ice not filled all the way try it sometime....on a tram....and then exit real fast when one slips...no is crushed in your hand and coke light runs onto the floor almost drowning a full grown border collie that happens to be lying at your feet because for some reason you don't have to be s seeing eye dog to ride these trains. Once again stupid amerikan strikes.
So seriously getting back up to Zimmer 4 and getting back to her Sunny has flipped to BBC Entertainment station and some show called Doctors which I guess is a weekly drama but is so surgically graphic it makes CSI and ER look like Dr Seuss. I don't think noticed the pumping open heart surgery going on mere meters in from of her thank God because she was getting resituated in bed. She began to nod off and on and I am happy to say that when mandatory Departue Zeit comes at 8:00 I was able to leave her in a much better state than when I first saw her at 0700 that morning. Walking out of the now mostly darkened hospitaal A few doctors were by the lifts in Der lobby(Zimmer 0). with the pitted patter of feet smartly echoing off the antiseptic like floors and whispered German bouncing off the walls I felt like that kid in Pink Floyds the wall. All that was needed was just another brick.
it's hard to fathom the incredible journey that Sunny's fight to beat Carcinoid has taken us on but I wouldn't want to have it anyway other way. Se will beat this. this is another lap in the race. The blessings we have been given as a result of prayers answered helps both of us and I think family and close friends to have the peace that comes with having the faith that if Sunny is willing to do her part God will always do his.
I haven't quite the knack yet of keeping these things short or even concise at times but I will try again tomorrow. Please pray. And then do it again. Thanks and goodnight from Basel.
Mark
The good dr mars called for Der pain team...and when they came they listened asked questions and determined that the best course was to do exactly what has worked for back home after immobilzations. I am glad to report that although the scans had to be pushed back to Wednesday, that she was able to catch up on some much needed rest as the afternoon and evening passed by. The plan is to still return to the states on Saturday.
It was physically hard for her and mentally draining for both of us but I can tell you she never completely lost her sense of Sunny. She managed to mention to every nurse and doctor that the tv goes only to two stations after nine and one was a "porn" version of MTV and the other was a continuous loop of Weakest link reruns. (she joked she knew all of the answers). By lunch she was able to get up and shuffle over to her table and eat a couple of the shrimp, although she left the black noodles alone. Actually when I saw it I thought of Indiana Jones in Temple of Doom and wondered where the heck the monkey brains were. I went out to Starbucks and got her a Rasberry Cheesecake which she ate entirely with her hospital gelati.
I can only tell you that the chilled squid surprise for lunch was actually the highlight of the food portion of her day. For dinner she was served two enchilada looking things oozing in some type of hot sauce garnished with a whole red chili pepper. Honestly I can't make this stuff up. I guess the Swiss Miss was replaced in the kitchen by Ricardo Ricola, mad pursuit of that well known food genre Swiss/Mex. Holy crap. I went out and scored us two Big Mac meals "take away" for a mere 28 US dollars. Forgot they don't but ice in the Coke light cups and if you don't know what happens when holding a McD bag with two drinks no ice not filled all the way try it sometime....on a tram....and then exit real fast when one slips...no is crushed in your hand and coke light runs onto the floor almost drowning a full grown border collie that happens to be lying at your feet because for some reason you don't have to be s seeing eye dog to ride these trains. Once again stupid amerikan strikes.
So seriously getting back up to Zimmer 4 and getting back to her Sunny has flipped to BBC Entertainment station and some show called Doctors which I guess is a weekly drama but is so surgically graphic it makes CSI and ER look like Dr Seuss. I don't think noticed the pumping open heart surgery going on mere meters in from of her thank God because she was getting resituated in bed. She began to nod off and on and I am happy to say that when mandatory Departue Zeit comes at 8:00 I was able to leave her in a much better state than when I first saw her at 0700 that morning. Walking out of the now mostly darkened hospitaal A few doctors were by the lifts in Der lobby(Zimmer 0). with the pitted patter of feet smartly echoing off the antiseptic like floors and whispered German bouncing off the walls I felt like that kid in Pink Floyds the wall. All that was needed was just another brick.
it's hard to fathom the incredible journey that Sunny's fight to beat Carcinoid has taken us on but I wouldn't want to have it anyway other way. Se will beat this. this is another lap in the race. The blessings we have been given as a result of prayers answered helps both of us and I think family and close friends to have the peace that comes with having the faith that if Sunny is willing to do her part God will always do his.
I haven't quite the knack yet of keeping these things short or even concise at times but I will try again tomorrow. Please pray. And then do it again. Thanks and goodnight from Basel.
Mark
Monday, January 23, 2012
Basel-Round Three-Mark Pinchhits
Well the treatment is over. After what seems like months of planning, fundraising, praying and nervously anticipating....the injection was done and over with early this afternoon. The trip over to the hospital this morning brought back a flood of memories...everything was like it was back in 2009...like some kind of Swiss time warp. I think the same doctors were outside the hospitaal smoking like chimneys next to the same 100 or so bicycles and mopeds as before. Sunny was eager yet understandably apprehensive as we zoomed through the lobby adorned with the latest in Ikea's hospitaal collection. We both instinctly knew what set of "lifts" would take us to the fourth floor...Nuklearmedicine. Unit 4-2. Same ease of admission...no checking of ids...no wait...right into her private room decorated in vintage "this furniture guaranteed to survive even the strongest of radioactive exposure...comfort optional" line. Our two favorite Swiss nurses Pierre and Martin were still in charge and honestly seeing their faces was in some goofy way reassuring. They knew Sunny. They had notes from 2009 trips about follow up care and how they had best managed her pain and nausea. Pretty impressive.
The young doctor...a Dr Mars... I kid you not...was very thorough and answered every question regarding the injection and process afterwards. I think at one point he was paged because he was late for recess...and I only say that because Doogie Howser is John McCain compared to how young the good dr appeared. But as I mentioned he was thorough...the injections...the first scan which would be done at nine on Tuesday morning ...the second series of scans on Wed morn and if all went well back to our little enclave at Swissotel. After putting the IV Amino drip in to protract the kidneys while Sunny got "nuclear" the good dr mars left and Pierre returned to review meal options. Let's just say I didn't know what "jacket potatoes" are and this afternoon's lunch gave sunny no answer either. Apparently beets...ground chuck and mayo consist of the ingredients with fried potatoes chunks....I don't believe that campbell's will be calling for this secret recipe anytime soon. Anyways...Pierre did the rest of the meal selection with her and it was time to go for me and time to go to the bowels of the hospital for her....floor -2. Two levels below the main floor.
Thank goodness I had our buddy Peter who once again was kind enough to drive down from Holland to hang with because it really is possible to feel alone in a city of fifty thousand or more. At least knowing the basics of the routine Sunny would be going through takes away some of the angst. She called a little after three wanting some real food and Coke Lights dropped off because of the aforementioned potato surprise lunch. When I got into her room she Pierre was in there taking out the IV drip and talking to Sunny about a near death heart attack experience he had. How it had given him a glimpse into his faith and that though he was growing in his walk with God he sensed in Sunny the presence of the holy spirit. It was a pretty amazing moment to hear our short slightly balding neon croc wearing Germsn lisp speaking English nurse have this conversation with Sunny. I guess neither one of us had ever really thought about God fearing Europeans on our previous trips because though there are spectacular centuries old churches abundant in Basel...some are museums some are restaurants and none seem to jump out at you and say come worship here. It was surely not a coincidence that Pierre who says is constantly looking to grow "in the spirit" was on today and was Sunny's nurse. A certain favorite pastor of ours back home always says "you go no place by accident that wherever you go God has not only brought you there but more importantly he is with you there". Trust me when I share that this was never more visible to us than right at that moment.
Sunny looked good considering every thing she has gone through but they were concerned with her blood count and weight loss. They will be monitoring tonight and throughout closely. After resting a little this afternoon Pete and I dropped off some dinner and more Coke Light and I was able to see her pain was increasing a touch but her spunk was still there. As the evening wore on and turned into night and then late night the pain has definitely ratcheted up. we have been on the phone quite a bit trying to help her keep her mind off of it. I can tell it sucks. that is the primary reason why this blog is so late in coming and may seem a bit scatterbrained. All I can say is that I will try blogging for our Sunshine again tomorrow but in the meantime please pray for her. And then say one more. And don't forget to add in the boys back home with Grandma as they go about their day.
Thanks to all of you in advance and thanks to everyone back home who is driving Carney boys around...dropping off meals...and just offering to help in anyway. It is truly a blessing for Sunny to not have to dwell on those things.
Finally...and I promise this really is it...a certain other pastor who I watch and read regularly believes that we should rejoice in our tribulations because it is through our "mess" whatever it may be that we form our "message". Sums it up pretty well. Talk to yunz tomorrow.
Mark
The young doctor...a Dr Mars... I kid you not...was very thorough and answered every question regarding the injection and process afterwards. I think at one point he was paged because he was late for recess...and I only say that because Doogie Howser is John McCain compared to how young the good dr appeared. But as I mentioned he was thorough...the injections...the first scan which would be done at nine on Tuesday morning ...the second series of scans on Wed morn and if all went well back to our little enclave at Swissotel. After putting the IV Amino drip in to protract the kidneys while Sunny got "nuclear" the good dr mars left and Pierre returned to review meal options. Let's just say I didn't know what "jacket potatoes" are and this afternoon's lunch gave sunny no answer either. Apparently beets...ground chuck and mayo consist of the ingredients with fried potatoes chunks....I don't believe that campbell's will be calling for this secret recipe anytime soon. Anyways...Pierre did the rest of the meal selection with her and it was time to go for me and time to go to the bowels of the hospital for her....floor -2. Two levels below the main floor.
Thank goodness I had our buddy Peter who once again was kind enough to drive down from Holland to hang with because it really is possible to feel alone in a city of fifty thousand or more. At least knowing the basics of the routine Sunny would be going through takes away some of the angst. She called a little after three wanting some real food and Coke Lights dropped off because of the aforementioned potato surprise lunch. When I got into her room she Pierre was in there taking out the IV drip and talking to Sunny about a near death heart attack experience he had. How it had given him a glimpse into his faith and that though he was growing in his walk with God he sensed in Sunny the presence of the holy spirit. It was a pretty amazing moment to hear our short slightly balding neon croc wearing Germsn lisp speaking English nurse have this conversation with Sunny. I guess neither one of us had ever really thought about God fearing Europeans on our previous trips because though there are spectacular centuries old churches abundant in Basel...some are museums some are restaurants and none seem to jump out at you and say come worship here. It was surely not a coincidence that Pierre who says is constantly looking to grow "in the spirit" was on today and was Sunny's nurse. A certain favorite pastor of ours back home always says "you go no place by accident that wherever you go God has not only brought you there but more importantly he is with you there". Trust me when I share that this was never more visible to us than right at that moment.
Sunny looked good considering every thing she has gone through but they were concerned with her blood count and weight loss. They will be monitoring tonight and throughout closely. After resting a little this afternoon Pete and I dropped off some dinner and more Coke Light and I was able to see her pain was increasing a touch but her spunk was still there. As the evening wore on and turned into night and then late night the pain has definitely ratcheted up. we have been on the phone quite a bit trying to help her keep her mind off of it. I can tell it sucks. that is the primary reason why this blog is so late in coming and may seem a bit scatterbrained. All I can say is that I will try blogging for our Sunshine again tomorrow but in the meantime please pray for her. And then say one more. And don't forget to add in the boys back home with Grandma as they go about their day.
Thanks to all of you in advance and thanks to everyone back home who is driving Carney boys around...dropping off meals...and just offering to help in anyway. It is truly a blessing for Sunny to not have to dwell on those things.
Finally...and I promise this really is it...a certain other pastor who I watch and read regularly believes that we should rejoice in our tribulations because it is through our "mess" whatever it may be that we form our "message". Sums it up pretty well. Talk to yunz tomorrow.
Mark
Sunday, January 22, 2012
Night before
In a few hours I will be entering the Universal hospital of Basel to receive my magic potion of Y90. Mark take the tram with me to the hospital walk me there and then leave. Tuthfully I had not thought about all day until is was just about time to put my head down on the pillow. We had a great day. We met our friend, Peter, for a wonderful breakfast that lasted over 2 hours of us just chatting and catching up. After that we went to a small museum, the lift ride was the most interesting part of the trip and we walked the town, I headed back to the hotel because was exhausted and needed to rest. Mark and Pete went out on there on adventure and that it was Mark is going to have to give those details. After resting I spent the rest of the evening out a wonderful dinner place and hung out for a few hours. It was such a pleasant day. Never once did I think about the treatment.
Well I came back to the room and Mark and Pete stayed out. I have to I am now replaying the past experience of tomorrow and the rest of the week. It'll be fine and I will get through it. I check in at 10 am and should have the treatment running through my veins. I am packed and ready to go. I am really at peace and have this great feeling its going to wipe this nasty cancer right out of me. Please keep praying for me that I minimal about of side effects and I am out by Wed. ready to get on the plane by Saturday home to the boys.
Mark post tomorrow will be so much more entertaining. I am have trouble keeping my eyes open. Please keep posted. Boys please continue to be doing well for everyone and know that I love. That is why I am here.
Sorry so short I'm still getting use to the time change and need to get some sleep.
Love, '
Sunny
Well I came back to the room and Mark and Pete stayed out. I have to I am now replaying the past experience of tomorrow and the rest of the week. It'll be fine and I will get through it. I check in at 10 am and should have the treatment running through my veins. I am packed and ready to go. I am really at peace and have this great feeling its going to wipe this nasty cancer right out of me. Please keep praying for me that I minimal about of side effects and I am out by Wed. ready to get on the plane by Saturday home to the boys.
Mark post tomorrow will be so much more entertaining. I am have trouble keeping my eyes open. Please keep posted. Boys please continue to be doing well for everyone and know that I love. That is why I am here.
Sorry so short I'm still getting use to the time change and need to get some sleep.
Love, '
Sunny
Saturday, January 21, 2012
Phase one of the Journey
We have arrived and I must say the trip was not so bad. We had three flights and none where full which made for a very roomy way. Our first flight was Pittsburgh to Newark, we were on a small commuter plane which are always difficult for me to fly in. Having one lung causes breathing pain when flying and for some reason smaller planes seem worse. But it was quick and I did use the pain meds which took the edge off. At Newark we flew to Dusseldrof, Germany. I kept joking with Mark that maybe we should stay there and see if some Harry Potter wizards or even muggles had any potions that would help me. Of course I had to have my run in or two with a few pushy Euros. I have to ask why do they think pushing through customs is going to make them get on their plane any faster? Each one of them had there bags searched and of course I walked by and gave them an American, "ha ha" with unsearched bags in hand. I want to stay nice but I have my own ideas on why their bags get searched. I don't understand why they are so rude and feel the need to "space invade"? Honestly they are right on top of me and Mark as we tried to take off our shoes and open our bags. "Back off and give me room to breathe please" I had to yell at one. Only to find he was one row ahead of me on the plane in Germany. I whispered for the whole long flight hoping he did not recognize me and my temper.
Of course that flight from Newark to Germany was much tougher this year then the trips before. My bone mets have spread and the old ones have grown. There where a few hours that I just closed my eyes and prayed, Eventually, I would pull myself together and get through it. We got to our hotel at about 9:00 am Basel time and both Mark and I where completely whooped. Just dead dog tired and I was crying in some pain. However, I completely forgot to ask what time was check-in when I booked the room. The lady behind the desk was so sweet, she said we would not be able to check in until two in the afternoon. At that time I felt the anxiety for the first time since we left home. How would I make it that long? I was vomiting, the pain is was so bad I am unable to even open my mouth. Not to mention I needed toothpicks to hole my eyes open. Then Mark begged her to get a room clean fast. For the tenth time that day he began to tell my whole story. I hate when he starts doing that in public but Mark talks about it with such pride. And people listen in such wonder. I get uncomfortable because I know its not me that gets me through this.....its the "Man Upstairs". Of course I get that pathetic look of feeling sorry for me which really make me squirm. After Mark pulling on some heart strings the front desk clerk promised us the first room clean. We were up in a room with in an hour and half.
Our friend Peter is coming to visit us from Amsterdam tonight and we are heading out to meet him for a bite to eat. Which I am sure is going to mean me eating then getting exhausted and leaving Peter and Mark to have a good time on their own. Somehow I think they don't mind that. I had already checked in at home and everyone is doing great. Shoveling out from a storm back in the burgh but nobody misses us yet. Wish that was the case for me. As soon as the taxi left the airport and started driving the streets of Basel to our hotel the memory of our last stays became so vivid. The gloom of sky, the garfette on the buildings and the bikers steering in and out of the way of our cab. Similar to the city of Pittsburgh just older but this is not home. This is where I spent weeks sick without my family. Mark reached over in the cab and grab my hand and said, "you made it Sun." . That is when I started seeing the surroundings differently. The doom and gloom memories became feelings of hope and accomplishment. The swiss grafitti that I could not read became art.
I know that the only way we got here is through prayer. I can not imagine getting as far as I have with my battle without God. He has put people in my life that have rallied behind me to make this possible. He has given us opportunities that only he could create. He was given me strength at times when I did not think I could give anymore. Just in our 16 hour journey today, or yesterday wherever you are reading this, He was pulled me through. The past two weeks of preparing for this journey I have strengthen my faith as well. I am really giving this whole journey to Him and letting Him drive the car. He has gotten us through so many obstacles to get here. There is no way it is not going to be successful.
Please keep praying for us. Mostly please pray for my family at home. Thank you all whole are taking care of them. From bringing dinners, to rides, to being on call when needed. Mark and I know we could not get through this without that help. We will be posted daily so please keep checking back.
Until later,
Sunny
Of course that flight from Newark to Germany was much tougher this year then the trips before. My bone mets have spread and the old ones have grown. There where a few hours that I just closed my eyes and prayed, Eventually, I would pull myself together and get through it. We got to our hotel at about 9:00 am Basel time and both Mark and I where completely whooped. Just dead dog tired and I was crying in some pain. However, I completely forgot to ask what time was check-in when I booked the room. The lady behind the desk was so sweet, she said we would not be able to check in until two in the afternoon. At that time I felt the anxiety for the first time since we left home. How would I make it that long? I was vomiting, the pain is was so bad I am unable to even open my mouth. Not to mention I needed toothpicks to hole my eyes open. Then Mark begged her to get a room clean fast. For the tenth time that day he began to tell my whole story. I hate when he starts doing that in public but Mark talks about it with such pride. And people listen in such wonder. I get uncomfortable because I know its not me that gets me through this.....its the "Man Upstairs". Of course I get that pathetic look of feeling sorry for me which really make me squirm. After Mark pulling on some heart strings the front desk clerk promised us the first room clean. We were up in a room with in an hour and half.
Our friend Peter is coming to visit us from Amsterdam tonight and we are heading out to meet him for a bite to eat. Which I am sure is going to mean me eating then getting exhausted and leaving Peter and Mark to have a good time on their own. Somehow I think they don't mind that. I had already checked in at home and everyone is doing great. Shoveling out from a storm back in the burgh but nobody misses us yet. Wish that was the case for me. As soon as the taxi left the airport and started driving the streets of Basel to our hotel the memory of our last stays became so vivid. The gloom of sky, the garfette on the buildings and the bikers steering in and out of the way of our cab. Similar to the city of Pittsburgh just older but this is not home. This is where I spent weeks sick without my family. Mark reached over in the cab and grab my hand and said, "you made it Sun." . That is when I started seeing the surroundings differently. The doom and gloom memories became feelings of hope and accomplishment. The swiss grafitti that I could not read became art.
I know that the only way we got here is through prayer. I can not imagine getting as far as I have with my battle without God. He has put people in my life that have rallied behind me to make this possible. He has given us opportunities that only he could create. He was given me strength at times when I did not think I could give anymore. Just in our 16 hour journey today, or yesterday wherever you are reading this, He was pulled me through. The past two weeks of preparing for this journey I have strengthen my faith as well. I am really giving this whole journey to Him and letting Him drive the car. He has gotten us through so many obstacles to get here. There is no way it is not going to be successful.
Please keep praying for us. Mostly please pray for my family at home. Thank you all whole are taking care of them. From bringing dinners, to rides, to being on call when needed. Mark and I know we could not get through this without that help. We will be posted daily so please keep checking back.
Until later,
Sunny
Thursday, January 19, 2012
Getting set, Ready and GO
Tomorrow is the beginning of our journey to Switzerland. As overwhelmed as I have been feeling this week I am totally ready to get on that plane and save my life. When I say overwhelmed I am not talking about the actually treatment. I am talking about organizing five peoples lives before I go. Honestly, the boys schedule and all the prep I had to do to make it easy on those watching them while I am gone is crazy. I guess going through the motions everyday and driving them here, going to a game there and getting them this and that for who knows what, seems easy, until you have to write it down and explain it to everyone else. Then of course their social life is a whole other story. So about an hour ago I finally got it all written down and explained.
On the treatment part I am ready. It's been a long road preparing for this. We have had obstacles that have got in the way but have not stopped us. I am really at peace with my decision and my faith is what I am completely leaning on at this moment. We have been on this adventure before and know that at times it is difficult but we are praying the benefits out weigh the stress and financial burden. The last two treatments in Switzerland may not of shrunk any of the tumors but did keep me stable for awhile. I have this strong feeling....call it my gut or my faith that this one is going to be the one that does wonders.
I want to thank everyone who helped us make this possible. I feel so amazingly blessed that I am going and have this opportunity. Also, I want to thank my entire family for staying with my boys and taking care of them. I can only hope that when we come home they ask us why we are here so soon. Please continue to pray for me. I know that your prays are the only thing that has gotten me through this whole battle. I have seen miracles happen when I ask for pray. I feel that this trip is that big miracle we have all been praying for. Please pray that long plane ride is as pain free as possible. Please pray that I am home as soon as possible.
Mark and I will be updated the blog daily. Please keep updated.
Much Love,
Sunny
On the treatment part I am ready. It's been a long road preparing for this. We have had obstacles that have got in the way but have not stopped us. I am really at peace with my decision and my faith is what I am completely leaning on at this moment. We have been on this adventure before and know that at times it is difficult but we are praying the benefits out weigh the stress and financial burden. The last two treatments in Switzerland may not of shrunk any of the tumors but did keep me stable for awhile. I have this strong feeling....call it my gut or my faith that this one is going to be the one that does wonders.
I want to thank everyone who helped us make this possible. I feel so amazingly blessed that I am going and have this opportunity. Also, I want to thank my entire family for staying with my boys and taking care of them. I can only hope that when we come home they ask us why we are here so soon. Please continue to pray for me. I know that your prays are the only thing that has gotten me through this whole battle. I have seen miracles happen when I ask for pray. I feel that this trip is that big miracle we have all been praying for. Please pray that long plane ride is as pain free as possible. Please pray that I am home as soon as possible.
Mark and I will be updated the blog daily. Please keep updated.
Much Love,
Sunny
Thursday, January 12, 2012
His Will
"The will of God will never take you where the Grace of God will not protect you"
I have to say recently the closer my trip to Basel, Switzerland comes the more anxiety I WAS feeling about the whole decision we made to attempt this treatment and trip again. I look back to the very first time I went to Basel to receive my first treatment there and compare myself to how I feel today. The fact that I am more advanced then I was and much weaker really took the best of my nerves. Making that long voyage across the ponds was a fright all in itself. Just driving in a car longer then an hour is extremely painful for me. Then receiving the PRRT radiation therapy that the Swiss doctors are hesitant in giving me because of my state added to the scare. Lastly, after making it through the treatment then traveling back home SICK and in even more PAIN then how I left just completely took over my anxieties. I have to add the expense of the whole trip and what taking that money away from my family's everyday living will do to them just put me over the edge for awhile.
Like I always do I fake my fear very well. I knew that if I let everyone who loves me see my fear I would have to listen to the very same things I say to everyone else. So I put my game face on for a few weeks and tried muscled my way through the fears and anxiety. However, they never went away. In fact they kept getting worse. Every little obstacle that got in the way seemed like huge mountains. First it was the hotel Mark and I like to stay at and has accommodated me so well, was completely booked. Then the exchanged rate changed making my treatment much more expensive. Austen was getting the okay to go back to sports after nine months of being off from surgery and his very first game was the exact day we were leaving. We would miss Nolan's birthday. We then got this huge medical bill for a treatment that I already had and insurance decided that they were not going to cover it. So of course after paying that bill (believe me I fought the fight before anyone emails me with suggestions) we were left short for the treatment cost. Also, let me add that the loan we had been pre-approved for a few months ago we were turned down for when we went to pick up the check. So we were even more short the finances. I knew and had been told by my oncologist that this treatment is my only option. There is nothing left. So the feeling of defeat set in.
After feeling so hopeless and having no ideas of how I was going to swing this trip I FINALLY turned to my faith. Why did it take that long??? I got down on my knees and with tear streaming down my face I GAVE IT TO HIM. I asked God what all these obstacles meant. Was He showing me that this treatment was the wrong choice? Was he telling me to quit trying all these experimental things and enjoy my time here? I begged Him to show me His Will for me. Guide me to where I am suppose to be. For the heck of it I wrote to Bidget, the contact person at the Universitätsspital Basel. Earlier when we schedule the date she told me that January 5th was my only option until March. I knew that I could not wait until March. Daily I see my condition worsening. Anyways I asked her if she had any cancellations for a week or two later. She said that just the day before a patient for Jan. 23rd cancelled. Time is what I needed to pull all the obstacles together. That is when my prays to God was answered. I knew then that I had to take the chance of this treatment because it is His Will and He will be with me. It was like a wave knocked me over.
I am ashamed that my strong faith flickered a little. Of course the circumstances have not changed. We are still scraping our money together. Austen had a set back his second day back to basketball, got knocked in the jaw and is out another week. The hotel price went from $295 a night to $695 a night but there was an opening. Of course we had to go elsewhere because the closet of a room we get for that price is by far not an option now. The boys schedules are nuts. Each one going different place at the same time and Plum is not the easy place to get around if you are not from the area. And of course that miracle of healing has not hit yet. I am still in pain and the flight is going to be tough. Although, since I gave it to God and let Him take control of the above I am at peace with it all. I have confidence we will make it, the treatment will be fine and we will be back before we know it. My hope is that when we walk through the red door of our home after this cancer adventure the boys look at us and say, "why are you home so soon?".
"The will of God will never take you where the Grace of God will not protect you"
Once you try it, drop me an email and let me know what happens.
Love to all,
Sunny
PS - look above on the right side at "in the Media" at the link for the Post today. A very lovely article was written.
I have to say recently the closer my trip to Basel, Switzerland comes the more anxiety I WAS feeling about the whole decision we made to attempt this treatment and trip again. I look back to the very first time I went to Basel to receive my first treatment there and compare myself to how I feel today. The fact that I am more advanced then I was and much weaker really took the best of my nerves. Making that long voyage across the ponds was a fright all in itself. Just driving in a car longer then an hour is extremely painful for me. Then receiving the PRRT radiation therapy that the Swiss doctors are hesitant in giving me because of my state added to the scare. Lastly, after making it through the treatment then traveling back home SICK and in even more PAIN then how I left just completely took over my anxieties. I have to add the expense of the whole trip and what taking that money away from my family's everyday living will do to them just put me over the edge for awhile.
Like I always do I fake my fear very well. I knew that if I let everyone who loves me see my fear I would have to listen to the very same things I say to everyone else. So I put my game face on for a few weeks and tried muscled my way through the fears and anxiety. However, they never went away. In fact they kept getting worse. Every little obstacle that got in the way seemed like huge mountains. First it was the hotel Mark and I like to stay at and has accommodated me so well, was completely booked. Then the exchanged rate changed making my treatment much more expensive. Austen was getting the okay to go back to sports after nine months of being off from surgery and his very first game was the exact day we were leaving. We would miss Nolan's birthday. We then got this huge medical bill for a treatment that I already had and insurance decided that they were not going to cover it. So of course after paying that bill (believe me I fought the fight before anyone emails me with suggestions) we were left short for the treatment cost. Also, let me add that the loan we had been pre-approved for a few months ago we were turned down for when we went to pick up the check. So we were even more short the finances. I knew and had been told by my oncologist that this treatment is my only option. There is nothing left. So the feeling of defeat set in.
After feeling so hopeless and having no ideas of how I was going to swing this trip I FINALLY turned to my faith. Why did it take that long??? I got down on my knees and with tear streaming down my face I GAVE IT TO HIM. I asked God what all these obstacles meant. Was He showing me that this treatment was the wrong choice? Was he telling me to quit trying all these experimental things and enjoy my time here? I begged Him to show me His Will for me. Guide me to where I am suppose to be. For the heck of it I wrote to Bidget, the contact person at the Universitätsspital Basel. Earlier when we schedule the date she told me that January 5th was my only option until March. I knew that I could not wait until March. Daily I see my condition worsening. Anyways I asked her if she had any cancellations for a week or two later. She said that just the day before a patient for Jan. 23rd cancelled. Time is what I needed to pull all the obstacles together. That is when my prays to God was answered. I knew then that I had to take the chance of this treatment because it is His Will and He will be with me. It was like a wave knocked me over.
I am ashamed that my strong faith flickered a little. Of course the circumstances have not changed. We are still scraping our money together. Austen had a set back his second day back to basketball, got knocked in the jaw and is out another week. The hotel price went from $295 a night to $695 a night but there was an opening. Of course we had to go elsewhere because the closet of a room we get for that price is by far not an option now. The boys schedules are nuts. Each one going different place at the same time and Plum is not the easy place to get around if you are not from the area. And of course that miracle of healing has not hit yet. I am still in pain and the flight is going to be tough. Although, since I gave it to God and let Him take control of the above I am at peace with it all. I have confidence we will make it, the treatment will be fine and we will be back before we know it. My hope is that when we walk through the red door of our home after this cancer adventure the boys look at us and say, "why are you home so soon?".
"The will of God will never take you where the Grace of God will not protect you"
Once you try it, drop me an email and let me know what happens.
Love to all,
Sunny
PS - look above on the right side at "in the Media" at the link for the Post today. A very lovely article was written.
Sunday, January 1, 2012
2012 is here and I am here. As I reminisce about the end of one year and celebrate the coming of a new year I cannot help but go back to the post I wrote a year ago (which I republished below. A year ago today I had just had my femur and hip replaced because the cancer had eaten through those bones. It was a tough recovery now looking back and many of you know that oops of the surgery, however I did awaken from the surgery with my leg. Even though it is not perfect and I have some issues the doctors where able to save it. Only three years prior I would of had it amputated. So truly one blessing despite the pain.
Since last year I have more growth and some progression. I had two chemoembolizations which helped keep the liver tumors stable. I think back to when I was first diagnosed three years ago and those wicked treatments where experimental. My bone mets are larger and several more have appeared. However, no other organs are invaded yet. So yes things are different but yes I am here. I have strong faith that the treatment on January 23rd in Basel, Switzerland will take care of those or at least keep it stable like the last two times.
My point is there is STILL HOPE. I have not got to the point where there is NO OPTIONS. Now I will tell you I have been told a few times this year that THERE IS NO MORE OPTIONS for me, but with my faith in the Man Above I have been given perseverance. That perseverance has kept me going on to not take no for an answer where treatments are concerned. Last year at this time I had full intent to head to Houston. I had all my information and records there. I had an apartment set up and even a date for the first treatment. At that time I really thought that was my next step. However, I did not let you all know this but I really was trying my hardest to get accepted back to the Swiss. I knew that I had three more opportunities for treatment there but they were not accepting me because of my progression and my condition. So Houston was the way I was turning. They were accepting anyone that would pay their price which is beyond my ability to count that high on a bad day of pain. In fact Mark and I joked that it was the same price of our first house and two cars put together. But my stubbornness was getting me there. I knew though that Switzerland was where I needed to because it worked the last time. It did not shrink the tumors but it kept me stable for almost 18 months. In that 18 months several other treatments became available.
With so much pray, SOOOOO MUCH, and so many convincing letters to the Swiss doctor from me and three of my oncologist I was reluctantly accepted. I have to tell you I have never thanked the Lord so much then on the day I received the email that finally said I was accepted. Next was getting the money for that trip. Which I have to say is much less then our own country was charging me. We had a few bumps in the road and set it back a few weeks but we are finally leaving on January 20th. So as you can see the faith that God would lead me to the right place and the perseverance that faith gave me is getting me there. I know that I am not cured yet, but I really feel so thankful that I have this opportunity to try.
At the end of my last years post I said, "This year I am still keeping my last years goal of FIGHTING FOR MY LIFE but I am adding a new ending.....I am FIGHTING FOR MY LIFE WITH A PURPOSE." Without being boastful, I think I have done that. I finally got my butt in gear and published my book on my battles. I try really hard to reach out to every email I receive, especially the cancer newbies. And I really hope I have set an example to others on how to live through your adversities with meaning. All of the mentioned is nothing of my doing though, its God working through me. Trust me if I did not have faith I would not be here today. GUARANTEE!!! I will admit, which I don't want to do, but I have been sicker. I also know that I have several more down days this year then last but I hope that means that my fight was better because I am still here. I know that when I sat at this computer last year in the back of my mind I thought there was a chance that I would not be sitting here today. After all I lost eleven of my carcinoid cancer posse this year, all diagnosed after me with less invasion. But for God's grace I am sitting here posting to you all. So I feel obligated to keep on keep with a purpose.
This year I am still keeping my last years goal of FIGHTING FOR MY LIFE and I am FIGHTING FOR MY LIFE WITH A PURPOSE but again I am adding my new ending......I am FIGHTING WITH FAITH AND EXAMPLE FOR OTHERS GOING THROUGH ANY ADVERSITY. And when I say quietly, "I don't think I can go anymore" which I will say, I am looking for all those that have been loving me through this Battle to tell me, "yes you can".
Happy New Year,
Sunny
below is last years New Year's Post.
Friday, December 31, 2010
2011
First before I get into my post I want to update all of you on how I am feeling. I have been overwhelmed with your emails and phone calls and assure you my lack of posting is only because my teenagers and the Holidays are keeping me busy and not because I have been too sick to post. As I stated in the last entry the surgery went very well. The recovery has been just as smooth. Its painful and very frustrating that I cannot be independent but I am way ahead of schedule for healing. I am walking with crutches and able to put weight on my hip and leg. Sleeping is complicated and I don't think since the surgery I have had more the 2 to 3 hours of sleep at a time. However, I have plenty of time to sleep later. I've been trying hard to tag along with Mark and the boys wherever they are going and even went to watch them Ice Skate at the outside Winter Classic Rink. After battle the crowds we ended up finishing the night at the PPG rink and then dinner with two other families. That was a little rough, only because I LOVE to skate and it killed me to watch. I got some great shots though. Mark brought the wheelchair but in all the confusion and crowds I just hobbled with the crutches. Its been great the last week here in Pittsburgh with all the excitement going on with the NHL Hockey Winter Classic being hosted in our great city. It's a good distraction for my sports crazed boys. I don't want the boys to miss out on that once in a lifetime opportunity so we are trying to make the best of my situation. I feel so blessed that I am well enough to hang with them most of the time and the rest of the time they don't want me with them. I know it's not perfect circumstances but I am determined to do whatever I can and not put limits on myself. Mark and the doc are not as happy with me pushing my limits. I don't think they can really understand until they are fighting this beast. So I listen to the lectures, especially from Mark, and just do what I can do.
Before I started to post I went back to the post that I wrote this time in 2009. Reading it reminded me how far I have come with this cancer in just one year. As I am going through this journey on a day to day basis it seems so consuming. With each appointment, treatment, surgery, new researching, scan and then the news it is hard to look at the big picture. That is why I am so glad that I started this blog. I am able to go back and reflect on the changes that have really happened. Last year at this time I did not know about the new experimental treatment that I am attempted at the end of January. The surgery seemed like a hopeless attempt to keep my leg. And truthfully I was not sure I would be here writing today.
That is why I must say that once again I feel so blessed. Over and over again I am told by those who love me, my friends and doctors that my unusual strength and fight is what is keeping me alive. I have had comments made to me that, "I keep getting back up every time I'm knocked down", or "I wont go down without a fight" and on and on. Just yesterday Logan and Nolan had a conversation with me about how tough I am. At my last appointment with my oncologist, Dr. Friedland, he came into the room as I was reading a Joyce Meyers book titled, "Never Give Up" and he took the book from my hands. He looked at it and said, "you don't need this, you'll never quit". I have to admit, I am quite humbled by all those comments and I want to start 2011 off by letting everyone know that I am NOT special. My choice to fight it not unusual and it is not something that I do on my own. I don't have some super strength or power. In fact there are so many other people fighting cancer that are tougher then I will ever be. But first and foremost what I do have that unfortunately others have not found is the Lord with me during every battle with this cancer. Every time I am at my lowest point and I think I cannot do one more treatment, one more surgery or one more appointment I truly pull my strength through God and pray. He gives me the ability to pull something out of somewhere and gets me or US (my family) through it. He gives me the peace I need and the knowledge continue on the journey.
So 2011 for me is going to be about making a difference like so many have made a difference in my life. Its going to be about reaching out to those who battle what I am battling but don't know where to get their strength from. When I say, "battle what I am battling", I don't mean just cancer, I mean adversity. I want to somehow express that if you give yourself and your problems to Him then He will give you the strength to fight it. I don't think God will always wipe your problems away because you have faith in Him. In fact if I look back since my diagnosis my struggles have tripled since then. However, I think he gives you the peace and the tools to climb the mountain. He puts you in situations and gives you people to help you through your troubles. This year I am still keeping my last years goal of FIGHTING FOR MY LIFE but I am adding a new ending.....I am FIGHTING FOR MY LIFE WITH A PURPOSE.
Happy New Year,
Sunny
Before I started to post I went back to the post that I wrote this time in 2009. Reading it reminded me how far I have come with this cancer in just one year. As I am going through this journey on a day to day basis it seems so consuming. With each appointment, treatment, surgery, new researching, scan and then the news it is hard to look at the big picture. That is why I am so glad that I started this blog. I am able to go back and reflect on the changes that have really happened. Last year at this time I did not know about the new experimental treatment that I am attempted at the end of January. The surgery seemed like a hopeless attempt to keep my leg. And truthfully I was not sure I would be here writing today.
That is why I must say that once again I feel so blessed. Over and over again I am told by those who love me, my friends and doctors that my unusual strength and fight is what is keeping me alive. I have had comments made to me that, "I keep getting back up every time I'm knocked down", or "I wont go down without a fight" and on and on. Just yesterday Logan and Nolan had a conversation with me about how tough I am. At my last appointment with my oncologist, Dr. Friedland, he came into the room as I was reading a Joyce Meyers book titled, "Never Give Up" and he took the book from my hands. He looked at it and said, "you don't need this, you'll never quit". I have to admit, I am quite humbled by all those comments and I want to start 2011 off by letting everyone know that I am NOT special. My choice to fight it not unusual and it is not something that I do on my own. I don't have some super strength or power. In fact there are so many other people fighting cancer that are tougher then I will ever be. But first and foremost what I do have that unfortunately others have not found is the Lord with me during every battle with this cancer. Every time I am at my lowest point and I think I cannot do one more treatment, one more surgery or one more appointment I truly pull my strength through God and pray. He gives me the ability to pull something out of somewhere and gets me or US (my family) through it. He gives me the peace I need and the knowledge continue on the journey.
So 2011 for me is going to be about making a difference like so many have made a difference in my life. Its going to be about reaching out to those who battle what I am battling but don't know where to get their strength from. When I say, "battle what I am battling", I don't mean just cancer, I mean adversity. I want to somehow express that if you give yourself and your problems to Him then He will give you the strength to fight it. I don't think God will always wipe your problems away because you have faith in Him. In fact if I look back since my diagnosis my struggles have tripled since then. However, I think he gives you the peace and the tools to climb the mountain. He puts you in situations and gives you people to help you through your troubles. This year I am still keeping my last years goal of FIGHTING FOR MY LIFE but I am adding a new ending.....I am FIGHTING FOR MY LIFE WITH A PURPOSE.
Happy New Year,
Sunny
Subscribe to:
Posts (Atom)