Sunday, August 8, 2010

caringbridge site

All of my stuff is now on my caringbridge site....


Thursday, April 8, 2010

anyone else ever been called an ENIGMA?

Well progress.....I wish I could be more excited about it but I caught myself another cold and feel like shit. My cytoreductive surgery and HIPEC (heated chemo) is booked for June 15th performed by Dr. Sardi and his team out East in Baltimore. I have been called an enigma by Dr. Sardi and Dr. Saad. I had to look that up in the dictionary.....something that baffles understanding and cannot be explained...a difficult problem.... For those of you who know me this fits me to a tee as I have been this my whole life!!
Take Pseudomyxoma peritonei as rare as this condition is and then add another rare disease called membranous Glomerulonephropathy my kidney disease,what do you get?...Mark Reinemann!!!! Two leading specialists in PMP Dr. Sardi and Dr. Sugarbaker have seen over 3000 patients and NO ONE has had kidney involvement like I have along with PMP, Thus being called an enigma! If there is anything positive to draw from this I will attract more attention from doctors,besides the normal PMP surgical team a Urologist and Nephrologist will be present to look after my kidneys.Another positive is that my tumor is of the less aggressive kind and should not be spreading as aggressively as other forms of tumors. Lastly I am in pretty good shape and have a strong heart but question the amount of blood pressure medicine I am taking. After I exercise about 30 minutes later my blood pressure drops very low and I am concerned and brought this up to my doctors.
Back to my cold....I have been sick since 1-20-10 with a upper respiratory thing and it was not as severe but always has been hanging around.Popping and cracking of my ears,cough and stuff.I have been volunteering and helping out with the South High baseball team which has been very good mentally for myself.Spring baseball stinks weather wise!!!! We had a double header last Saturday and standing 8 hours in mid forties,sleet and 15 mile an hour winds is not good for anyone! How do you think it is for someone with a compromised immune system? Yesterday Carlee and some friends went to the Brewer game which was nice and we got to see Trevor Hoffman earn his 593 save! After the game we had to run to the car about 4-5 blocks away in freezing ,pouring rain! The ride home drenched in wet clothes did not help anything! We had snow this morning so I am sure the game scheduled tonight and tomorrow will be canceled,so this is a good thing! I will have to weigh my participation helping the team with my well being physically.
Several PMPers and some of my friends have used a web site called caring bridge to share developments on their medical condition,and to receive support from friends and loved ones. I am considering doing this for my surgery. I have been looking for some pictures of myself to post on that site and have noticed a problem. The only pictures I can find of myself is where I am holding something I harvested while fishing or hunting! I am not ready to join PETA or Greenpeace but what am I doing? Here I killed one of God's beautiful animals in the prime of it's life ,smiling for the camera....look what I did!!! I am not so proud of this any longer.
You start to realize what is important in your life,family,friends,good and bad times spent together...stuff like that. So please don't find it strange if I ask to have my picture taken with you in the near future!

Saturday, March 27, 2010

Is God in the fortune cookie business?

Returned from my adventure out East to find a specialist and it turned out to be marvelous trip! All I left with was the clothes that I was wearing...of course my $250 dollar pair of allen edmond dress shoes, ( a reminder to me that I once had some money!) dress slacks,dress shirt,and a light sweater. On my back was my scent free camouflage hunting packpack,I never thought I would be using it for anything other than carrying my hunting supplies. If you remember way back to my earlier e-mails this is the packpack I spoke about eating food out of all the time while bow hunting while I was on steroids!Inside the pack this time was a pair of jeans,two polo shirts,two pair of socks and underwear,gym shoes,bathroom stuff (electric razor,tooth brush ,paste,floss,contacts, glasses, and medicines)and my notebook. No problems getting my boarding pass and going through the check point....I was at the gate an hour before my flight....a good start!
At the gate a black man sat next to me and he started to talk to me,after a while he knew what my trip was about and as we started to board the plane he said...are you a man of faith? Sure am I said. Would you mind if I prayed for you?Not at all I said...well i thought he meant like later when he was alone! No he meant NOW!!!! So he put his arms around me and said about a 2 minute prayer! I think he was a southern baptist ,as we boarded the plane I handed him my book...Have a Little Mitch Albom and he was very excited to receive my gift.I put my e-mail inside the cover and will let you know if I hear from him.
Later that day in Washington D.C. at Washington Hospital Center I had my consult with the legendary Dr. Sugarbaker,it was an honor to meet him and his wife, they really liked me,she even gave me a umbrella to keep to go sightseeing because the skies looked threatening.He has saved lots of lives over his career and is the one person who invented the cytoreduction system. However he seemed to me like a old Michael Jordan if you will ,I was not convinced that this was my doctor. Two things about the hospital,this is where Barb Schwanke of Sheboygan had her pmp operation performed over 5 years ago and she is doing great. This is also the hospital that Reverend Jim was born at. The hospital seemed old and dated from what I am use to and I think it is located in a not too wealthy part of town. There was security guards stationed at certain points and I still was approached by pan handlers for money...not use to that! After meeting some wonderful people I was looking forward to my next consult in Baltimore.
My consult with Dr. Sardi could not have gone any better!I met several members of his team and I could feel the warm healing atmosphere.I felt comfortable with leaving my life into the hands of Dr. Sardi and his team! What a huge relief!I am soooo pumped!I FOUND MY DOCTOR! He is also one of the top specialists in the field....he knew everything about my medical history and problems that I have and is going to be contacting Dr. Saad to come up with the most effective and safest plan...a urologist will be in on the operation ,at that time they will take a biopsy of the two cysts on my left kidney to see what is best...options are...leave and watch...remove kidney....or cut out the cysts, leaving about 65% of the kidney. No date has been set but it kind of looks like it may be early June. I have a big birthday on the 5th!!! not that I count them,but maybe shortly after that.Darlene Dr. Sardi's PA gave me some wonderful news...they have I think it is called the 'HOPE'' foundation for people with cancer who travel far away...they provide free hotel rooms for caregivers....she knew that this caregiver thing is a touchy subject because she watches the pmpbellybutton club site and saw that I was asking questions about caregivers...I am thinking about doing the operation without a caregiver...most of you know I am pretty many of you could wait 6-7 or more days with a ruptured appendix before you sought treatment?(or stupid enough!!)I have had several people some of them strangers who have endured MOAS...mother of all surgeries who offered to be my caregiver! Two of my friends when they heard free hotel in downtown Baltimore(I could not find a room for less than $180 a night!) offered to do it.Rudy and John P but I am sure they would be at Camden Yards watching the Orioles,eating oysters at the fine restaurants located there,checking out all the hot spots,etc. I could just see it...maybe we should check on Markie today! How is Mark? Oh he left a week ago!Looks like Debbi and maybe my daughter will be there for like the first 5 days and if there is no complications I am sure I can handle it by myself.Besides I have set some goals to beat other PMPers who recently had the MOAS.First day out of the hospital...first day getting out of bed without assistance...first day to pass gas!Hard to believe that's a highlight but your whole digestive system has been shocked! But if I am the only one there I can really focus on these things!
At my appointment I met a pmp survivor Bob and his beautiful daughter Pam,he was there for a checkup and Darlene asked if I would like to talk to him.They are from Baaaaaston and talked kind of funny but cool accent .I am sure they thought the same way about me with my Wiscoooonsin twang. We spent about 3.5 hours together and they really made the day much more enjoyable.We took a cab from the hospital,Pam hailed a cab before I knew it! I wanted to see if I could hail a cab because I never did that!(actually I don't think I ever road in a cab before!) Of course hailing a cab women especially a looker has a huge advantage over the men...even if I was wearing my allen edmonds! Bob paid for the cab to the airport and I offered to take them out to eat once we passed security.We found a Chinese restaurant(Bob had Subway...but I thought you can find a Subway anywhere!) We ate our meal and had nice conversation but sadly it was time for them to get to there gate. Pam said ...what does your fortune cookie say? I cracked it open, pulled out the little slip and said......You will meet two wonderful people today!....they laughed and we gave each other a big hug and off they went.I then looked at what the fortune cookie slip really said .......An important discussion will take place today!.....Neat huh!
I want to thank Paul Pachniack who works in Milwaukee for picking me up at the airport and taking me home, saving a family member the trouble of driving to Milwaukee and back to Sheboygan.The only problem was that we stopped at Copps to eat,I ate two huge cheeseburgers and Paul brought me a dish of custard to boot! I was exhausted by the time we got home but was not able to fall asleep because of my stomach being so full! It was a wonderful trip!
I will try to keep things updated and let you know what is going on.Many of you know I am not a computer guy and I am getting my boat out of storage real soon.The Rainbow and Brown Trout fishing on Lake Michigan is upon us so you may not hear from me but do not be afraid to call or e-mail....I will check every couple of days.I am well and hope that all of you are also!
If anyone wants to send me good vibes(to catch fish too!) and thoughts and prayers,I would not mind at all.

Friday, March 19, 2010

turning into" use to be guy"

Ive read from bellybuttons reports about how you will get use to your "new self"over time. To be honest it has been so long(before 2-10-09) since I felt well that I can not even remember what it feels like to feel good! Don't get me wrong I am fighting and doing what ever I can to improve my health....resting,eating healthy,and exercise but I just do not feel or look well.Must be the powerful drugs I subjected my body to along with the disease or diseases that I have. No one is sure if my kidney disease is separate from my PMP.I am flying out early Monday morning to have consults with Dr. Sugarbaker in D.C. and Dr. Sardi in Baltimore and am interested in what they have to say and treatment plans. It should be interesting...I made all of the arrangements and for those who know me well ,I know you are laughing!Jeepers are things expensive out East!!! Especially when I had to make plans at the last minute.Just what I need is more stress! At least I am going alone and only have to take care of myself!
Boy I really took my athleticism for granted! Not long ago I had a 227 a game bowling average,I could drive a golf ball 300 yards,climb trees at will,had a strong throwing arm,pretty good ball player and was still playing fast pitch softball until a couple of years ago against 20 year olds and could still kick there ass.For the last ten years except for last year due to my ruptured appendix I was a volunteer baseball coach at South High...I am going to help out this year as long as I can before my operation....that will help keep things off my mind. I also may hit the driving range to poke some as far as I can.I also will be taking some batting practice and hopefully hit a couple out of the park one last time. I am cognizant these things are coming to a end very soon.
I remember the lyrics from the song"forever young",it goes....forever young,I want to be forever you really want to live forever?
Seems to me you don't have a choice...hey even with my illness each day is not real great...but each day is still good!

Thursday, March 11, 2010

destination unknown

Going on walk abouts through swamps ,fields and hardwoods has been one of my favorite things to do ever since I was a kid. As I kid I never really had a destination other than the woods...what you came across during these trips was always a surprise.Yes I was looking for snakes,frogs or turtles and I made plenty of return trips home with reptiles my mother could not stand to look at.After a few days of keeping them in buckets and garbage cans I would take them back to where I found them and release them.These days while looking for new hunting spots it just is not the same....I am "boxed" on where I can walk and search due to property lines...I would love to explore new lands but these days it is a sure way to get yourself a ticket from the local sheriff!
For this reason I have found fishing in my boat fills my desire to explore and search for the unknown.When you go out on the water with a vessel you can pretty much go anywhere you want... destination trespassing signs,no fear of getting a fine as long as you have all the required equipment and follow the fishing regulations.Just enjoying the view and keeping one eye upon the weather,trying new waters for fish...yes having two motors in case one acts up and a GPS to show you the way home sure puts you at ease when you venture out so far that you can't see shore .I have learned to respect the "big pond" conditions can change rapidly. It is always better to fish another day than to test it. That is what I like, not knowing what you are going to experience that day or if you are going to catch fish,neat sunrise or sunset stuff like that.
My illness has put me in uncharted waters...Who will be my doctor? When will I have my operation? Where will my operation be?What will he find? Will I be OK? Will my insurance cover it?Who is going to be my caregiver? Do I need a caregiver?Why put someone else through my battle?How soon will I be able to fish again?Go back to church?Go back to work?Oops...I first must find a job or start a business before I can work. When do I get off these damn medicines?This new drug called myfortic I am taking warns that it may cause anxiety! I have an idea on how to lessen the anxiety!!!!! Don't charge so much money for your drug!!! $400 a month!
While heading into destination unknown I plan on viewing it like a voyage on a new boat.
Enjoy the view
Explore the vessel
Make friends with the captain and others on the boat....God,doctor's,nurses,new friends,etc
Fish a little...only in my mind
Get off when I get home and do good

Monday, March 8, 2010

Seems like yesterday

For those of you who know me well,you know that I have never really liked computers. I am having a hard time finding the motivation to write on this blog.Personally I prefer to write in my notebook where I can keep my more personal thoughts to myself. I also realize that if I do not update this more frequently no one is going to follow it... not that anyone is anyways. It seems like yesterday when Debbi and myself were debating if we should get a know the kids were saying...come on Mom and Dad everyone else has one,and so on.I remember the arguments with the kids over who is using the computer...I need it for school work...I need it for this and that!
We now have NINE ways maybe more to access the internet in my family. Two normal pc's,two lab tops,one ipod thing,and four cell phones...Last night while watching the academy awards with Debbi and Carlee they were using there cell phones the whole night on the internet...You might think it was family time together but it was far from that...they were who knows where as they jumped around the internet and facebook crap. I do not remember too much from when I was confirmed 35 years ago,but I do remember Reverend Koch placing his hand upon my head as he read to me my bible verse he selected..I do not remember what book of the Bible and verse but I do remember what he said......Test everything, abstain from all forms of evil......I think this internet digital age is sneaking up on a whole lot of people and family's. I am concerned and feel that there is a real dark side to this besides all the obvious evil things the internet offers. I have learned to trust my instincts and the red flag is waving! I imagine the digital devices are just like anything else,if used in moderation it can enhance ones life,but if used all the time addiction is sure to take hold.
There is some good on the net! I have found a site on the internet for people who have the rare cancer that I have called PMPbelly button club and the cancer patients and survivors have been most helpful to me and very supportive .Total strangers pleaded me to seek out a specialist to perform my operation so mistakes are not made like what they have endured because of bad choices they made or doctors not knowing what they are dealing with.I have heard them loud and clear...I have canceled my operation at Froedtert and have sent my medical records to three doctors who are specialists in hopes that they can take my case...Dr.Sardi of Mercy medical in Baltimore...Dr. Sugarbaker of George Washington hospital in D.C.....Dr. Fournier of M.D. Anderson in Houston. Once I hear from them I will be flying out to them to have a consult and when I meet a doctor that I feel comfortable with we will make plans for the MOAS ...mother of all surgeries.
Four people have died on the PMPbellybuton club since I joined 3 weeks ago and this has really shaken me and has brought gravity to my condition and just how serious this can be .I have found myself praying for these total strangers and their family's.I will try to write more often and keep things updated.

Monday, February 15, 2010

Thinking of a nickname

Hey guys after a pretty heavy last post I thought I would get back to my strange sense of humor that some of you have grown to love!When I have my operation my spleen and gall bladder will be removed....I also will have a incision that will be from my sternum to well below my bellybutton.I just joined a support group for individuals who have this rare disease called PMP bellybutton club.
I see that many there have a nickname and I am trying to come up with a good one.....This is what I thought up so far but would appreciate any other suggestions!First seeing my spleen will be removed how about.....THE SPLEENLESS WONDER.........What do you think?My second choice comes from that idiot on the hit TV show JERSEY SHORE....if you know what I am talking about one of the main characters name is ....THE SITUATION...cuz all he does is work on his abbs.I got to thinking with my long incision how about........THE huh?
I asked why they call it bellybutton club and I found out that most patients lose there bellybutton from the surgery....Now I am worried...I have been collecting the "NAVEL LINT" from my bellybutton for quite some time now. I am going to use this lint for filling in a pillow I am making for a friends birthday but I am a little short. Looks like I will have to use "STUFF" from one of my other orifices to complete the job!I can't wait to see the look on PAPA SMURFS face when I give him his present! Is there anyone else out there that wants a gift from me?