caringbridge site

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

www.caringbridge.org/visit/markreinemann

Mark

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.
MANY MEN GO FISHING ALL OF THEIR LIVES WITHOUT KNOWING THAT IT IS NOT FISH THEY ARE AFTER.....HENRY DAVID THOREAU
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!
I WILL ALWAYS BE AN ENIGMA!
WHEN YOU THINK ABOUT IT AREN'T WE ALL?

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 Faith...by 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 tough...how 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.
SPRING IS HERE!

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 young........do 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!

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" in...limited 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 unknown....no 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

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 computer....you 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.

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 SPLITUATION....cool 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?

Pseudomyxoma Peritonei-Cytoreduction Surgery

Yesterday Feb. 10th was the one year anniversary of my ruptured appendix. A year later I finally received some hope and some answers. It will not come easy and will require me to go through a nine hour operation with up to a 3 week stay in the hospital . I went to Froedtert on Feb. 10th and gave 3 tests- dexa scan- to check my bone density and possible side effects from over exposure to steroids; An ultra sound to look at my kidneys and bladder, and my 5th CT scan of the year. I then met with my oncologist doctor Sam Pappas at 3:00pm. The previous 4 CT scans showed no change in my abdomen or my spleen which is filled with cysts too numerous to count. Over 30 oncologists at University of Wisconsin and specialists have never seen a spleen like mine. This 5th CT scan shows that my spleen is growing and changing in size. Doctor Pappas showed me the comparison of the previous scan and I could see the difference. He could also see mucus outside of the spleen.
What has happened is that when my appendix ruptured there was a tumor inside of it that spewed it's micro-organisms throughout my peritoneal cavity (my guts) and has started to grow new tumors and also effected my kidneys and spleen. My tumor was labeled a mucinous cystadenoma. The name of this rare appendix cancer is called Pseudomyxoma Peritonei. PMP for short. Fortunately I do not have the more aggressive tumor that can metastasize (SPREAD) to soft organs outside of the peritoneal. I have the low grade malignancy, low grade cancer. As most of you know, I have just completed my 6 month immuneosuppressant treatment of steroids for 30 days, followed by chemo for 30 days, repeating until my 6 months was over. This was for my kidney disease which yielded poor results. It did not work seeing as how my doctors did not know I had PMP. What this treatment did do was it create the perfect environment for PMP to spread throughout my peritoneal cavity because of my immune system, which unable to stop the disease.
For this reason, Doctor Pappas wants to perform the cytoreduction surgery asap. I am schedule to have the surgery MARCH 9th, 27 days from now! It has been a blessing that my rare condition has put me into the hands of the very best doctors. PMP has effected my kidneys and again, no one has seen a spleen like mine (3 times larger than normal.) Doctor Pappas is a personal friend and has worked with the pioneering doctor of PMP, Dr. Sugarbaker. Dr. Pappas also did his studies at University of Pittsburgh and has worked with Dr. Holzmann, another leader in PMP. The good news is, when all the PMP is removed, there is a very good chance my kidneys will come around and work properly! Dare to dream! During the operation, my spleen, gall bladder, and possibly my left kidney will be removed.
I recently met a friend, Dan, who just had the cytoreduction surgery done in Houston, TX. He is back home in Sheboygan doing well. Dan has some great links and some very gross pictures of PMP surgery being performed on the bottom right side of his blog. I would love to add that to my blog, but it is way beyond my computer abilities. (I will have to consult my genius daughter, Mallory.) If you care of read more about appendix cancer and the chemo wash (hipec) that I will have done, his blog is www.oncoloblogy.com. He has been a great help to me; not sure yet how I can return the favor.
I had to wait about an hour and a half in the area of the cancer clinic called "Faith Quadrant," because my tests were completed. As I sat waiting to be called, there was a lady also waiting who I saw was crying and must have been Catholic, because she was holding and caressing Rosary beads. My whole life up until my illness has always been a game to me. Always concerned about enjoying life and having fun. I was blind to everything else going on. I tell you I will never be that person again. On the wall of the faith clinic, there is a quote. "Take that first step in faith.. you do not need to see the whole staircase.. just the first step." - Martin Luther King Jr.
Just letting you know I am well on my way up that staircase.

When things don't work out as planned

It was the last morning of our annual fishing trip. I caught 4 Musky during the 5 day trip,I had a one fish lead over Lee in our unspoken fishing tournament. It may have been a competition in my mind only,the other members of our group are what I call casual fishermen.They do not display the patience and persistence it takes to catch Muskie's. They do a variety of fishing tactics where they can relax,have a few beers,and see how many ounces one can pee in the plastic urinal as they wait for there bobber to go down or watch there fishing rod tip while drifting.Nothing wrong with that but I stood and cast for a"real" fish the entire trip,I am not interested in catching pan fish or small walleye's and I have a small bladder!For three days I fished hard with no strikes or sightings of a Musky. Finally on Saturday I caught one musky followed by 3 more on Sunday,one in the morning and two during the evening. Lee is a force to deal with and a real Musky fisherman,he carries 4 musky rods tipped with hot lures and possesses a massive tackle box filled with musky lures.I have one musky rod and only a few lures.
I had the perfect plan for the last morning fishing trip.I knew the whole fleet was going to the small lake where I caught fish the previous day. Papa Smurf and I went to another hot spot on a different lake and had the whole area to ourselves.As a group we agreed upon a time to fish until leaving us enough time to get the cabin cleaned and still be on our way home by noon.With only a couple of mins. left to fish I caught a small northern.I was holding the fish out of the water with my left hand about 15 inches above the fish.I had a pliers in my right hand that I was going to use to dislodge my lure from the fishes mouth,as I approached the fishes mouth it shook violently sending my lure up in the air snagging my left thumb with one of the heavy hooks....fortunately the fish was free because I was in enough pain,just think if the fish was still flopping around with a hook in my thumb!Ouch!After a short while as we both calmed down I taught Papa Smurf how to drive the tiller of the boat because it was difficult for me with this huge lure attached to my thumb and we head for the cabin.


Once back at the cabin Doug offered to drive me to get the lure detached from my thumb.To the west 13 miles away is Park Falls and they have a hospital there.We headed east towards Minoqua to a bait store called "Rollie and Helen's "as I walked into the store a squeamish clerk saw my problem and handed me a bolt cutter especially designed for cutting the heavy hooks of musky lures.As Doug stood by my side cheering I began the surgery without a shot of Jack Daniels!First I cut the hook close to my thumb freeing the rest of the lure,then with a pliers I grabbed the barb portion on the other side of my thumb on began twisting the cut hook through my thumb.Doug was shouting"It's working,It's working..almost...It's out!"If we would have went to the hospital in Park Falls there would have been emergency fees and so on....the real reason I did not want to go there is because at the hospital they have a rule that they get to keep the removed musky lure and it becomes part of a "shrine"a wall filled of lures removed from fisherman.That Squirrely Bert cost me 20 bucks!
That asshole Lee ended catching a Musky that final morning tying my total of 4 .I then had to pull out my Pike ,Round lake Musky Rule Book.It clearly states in "Rule RJ-3...number of fish caught...in the event of a tie the fisherman with the LEAST amount of fishing equipment shall be declared the winner."I WON!!!!
My 6 month treatment for my kidneys has not gone as planned and results have been good for shit!It has been very frustrating,upsetting,disappointing,discouraging,etc.Tests galore a lot of them painful but I introduced some very powerful chemicals into my body for nothing!During my treatment I have had mouth sores,food did not taste right,tooth paste and brushing my teeth was the worst...something with the chemo.My eyes felt funny and I had blurred vision at times.The tips of my fingers and my left heel became numb and tingly for some reason.My "BOYS" swelled to the size of golf balls and were more sensitive than usual from the steroid.My weight fluctuated from 180 to 206...up and down...up and down...up and down.I spoke about my "clown hair"in a earlier post ,I did not lose it but it is very thin and stringy .My immune system is at a all time low ,I have been really sick with a bad upper respiratory infection for over three weeks.Tests revealed a very low white blood cell count,I am anemic ,and I have been on antibiotics for over a week and still have it!Gotta love that chemo...that is why I have not updated this blog...it has been a very rough 3 weeks!
You heard the saying...when the going gets tough...the tough get going!I could ask why,why,why,cry,cry,cry,whine,whine,whine some more but that does not do me or you any good.I must stay in my circle of influence ,focus on what I can control and do not waste energy on things I can not change.First check my attitude as I have been feeling sorry for myself.My life has been crumbling for over a year,today(FEB 10th) is my one year anniversary of my ruptured appendix.When I think about it I have not received any good news in regards to my health and the doctors still do not know what is happening to my body.(I meet with my oncologist today)Boo hew,boo hew,whine,whine and then I realized....Hatti crumbled in 35 seconds changing the lives of thousands in that time frame!I will stop complaining of my small issues and feeling sorry for myself...each day is a gift!
I have done some research on the computer and there is things I can do to improve my immune system.First foods I should eat,omega3 found in fish like tuna and salmon twice a week(I have a freezer full of salmon caught last year)Lots of vitamin C and E,eating whole grains,brown rice,eggs,cottage cheese,white chicken meat,pasta and garlic,6 to 7 servings a day of fruits and vegetables special interest in cauliflower and broccoli. No soda,alcohol,fried foods and avoid meats with too much fat.Regular exercise and at least 8 hours of sleep a night,I must get rid of this upper respiratory infection so I can start exercising once again.For the most part I am doing the rest but I need to step it up a level and build my "Cape of invincibility "surgery is on the horizon!
So that is my plan,check my attitude,go to church every Sunday,eat healthy,get lots of rest,exercise and vent through my blog and stay the course....I sure would not object if I have some wing men or wing women along the way!!
The night after my colonscopy before I got my cold I went to open baseball practice for the high school students at south where they can throw,field,and get in the batting cage.Coaches are to refrain from teaching due to wiaa rules but you can still make small comments or suggestions to them. About 4 years ago well before my current problems I wrecked my right throwing shoulder trying to start a old lawn mower,I kept pulling and pulling and pulling until it started.My whole life in one form or another there was always baseball and I never had any problems with throwing a baseball my entire life...so go figure a old lawn mower get's me! A MRI showed nerve damage and the doctor said there was nothing that could be done and it will just take time. I had a huge ball of muscle on the top of my shoulder and my blade "winged"out like a angel and I could not throw a ball.
With all my other medical stuff going on I forgot about my shoulder.Well I stretchered out my arm,found a partner and began playing catch. I was amazed at how painless and fluid I threw the baseball.I was very accurate in my throws but had no where near the velocity I use to have,but that can be worked on.I do not know how to explain it but this small act has brought me some much needed hope!If I can throw a ball again I can do anything,I can beat anything! My arm is healed and it has given me comfort and peace and is a sign that I am going to be alright!!

Hide the Penny

I remember when the kids were little how much fun we would have playing hide the penny. The game works like this, one family member would hide the penny anywhere in the living room after everyone else left the room. Once they returned it was game on, and the first person who found the penny was the winner and then they had a chance to hide the penny next. There was many times that the kids could not find the penny and I would give clues.. "Mallory, you are getting warmer," then the others would race over to that area until someone found it. Carlee was about 4 years old when she hid the penny and we could not find it after a few minutes. When we asked her for clues, Carlee would not give us any clues so we kept looking.. a couple more minutes passed and we started whining. "Carlee we need a clue!" Finally, Carlee looks at us and says, "IT'S SOMEWHERE!!" All I can think of is, "Great, another Reinemann smart ass." Some clue! Well as it turned out, Carlee was not playing by the rules. The penny has to be visible for others to find.. and Carlee had the penny in her pocket!

I am learning that illnesses also don't play by the rules! My treatment of the kidneys is falling far short of expectations. I have 18 days left of the chemo portion until my 6 month roller-coaster-ride-from-hell is over. There are some good signs.. my albumin (protein in my blood) is increasing, I have not had any swelling of my ankles since 11-22-09, and I have reduced the amount of blood pressure medicine to one 40mg pill of Lisinipril. My kidney doctor suspects that there is a secondary cause that is hindering the healing of my kidneys. On December 30th I met with one of Froedtert's best doctors. Doctor Sam Pappas is an oncologist surgeon who specializes in a rare cancer called Pseudo Myxoma Peritonei (PMP or "jelly belly" for short.) You get this disease from having a ruptured appendix where micro organisms start to grow on your internal organs. Dr. Pappas ordered some labs called tumor markers to see if i may have the big "C." The two tests were CEA and CA19-9; my CEA came back at 59, much elevated from normal- and my CA19-9 came back at 92.5.. and anything over 37 is considered abnormal. Not good!

Dr. Pappas called me last Wednesday and moved my scheduled appointment from Jan. 27th to tomorrow, Jan 18th.. this can only be good news (yeah right!) Based off of my first talk with Dr. Pappas, he wants to perform surgery on me before the end of this month. I am not comfortable with this due to my immune system being at an all time low from my steroid/chemo regiment. If something goes wrong, my body has no way to fight back and this blog could be over real quick! Dr. Pappas point of view is this: he suspects PMP and with my immune system being down, PMP will be running uncontrollably and unchecked by my body. Therefore he wants to get in there as soon as possible. Seems like we are getting "warmer" to the clue. "It's somewhere!" But hey, in order for me to get a full recovery we must get down to what's causing this whole thing.. I will keep you posted.

I want to thank Dave Kolar who took a day from his vacation to drive me to my appointment on Dec 30th. Just goes to show what kind of friends that I have, and many of you have offered to help me all the time.. I am very moved by that. Thanks again! I had on my $250 pair of Allen Edmond shoes and nice clothes and looked real good other than my bug eyes. Dave always looks sharp, too! But, the doctor and the nurse thought that we were a "couple" and asked, "Do you live together?" Very awkward!!! I was laughing as I told them we did not. Debbi is coming to my appointment tomorrow! We could not afford to have Debbi miss 8 hours of work- remember I had no income since the end of September. I finally was approved for long term disability after I submitted 20 pages of questions to MetLife.. I also did this without the aid of a lawyer. Knowing I have this provides some comfort if things keep heading in the wrong direction.. it was a huge weight taken off of my shoulders.

Happy Birthday to my baby Carlee on the 15th!

This is her watering the flowers naked outside of our home on Harry Court. She loves it when I pull this one out! And actually, when she graduated High School, Mallory put this picture in a frame for all to see at her grad party. We will always have our sense of humor!

This is Carlee now- what a beauty! She must get the good looks from me, haha. :) But just you wait, Carlee.. we'll see what happens next time when you use all the hot water for your shower again!

Mallory, your birthday is on the 22nd and I'm pulling out the photo albums! I would start kissing my butt if I were you!

Comments

Hello all,

Was messing around with my settings with Mal and we figured out the way to enable anyone to comment on my posts- you no longer need to have a Google account. It will post under an anonymous name, but just sign your name at the bottom of your message if you wish. That's all for now- still getting the hang of this thing!

Mark/Mal

Old Emails

Hello to my millions of fans (haha)-

Before I had this blog, I was sending extremely long emails to family and friends. A few people were inspired and touched by them, and encouraged me to start a blog. Because I am completely computer illiterate (my daughter Mallory is typing this as we speak.. otherwise it would take hours!) it took me awhile to get this started, but so far I am having fun with it! I feel that I am now part of the Twitter/Facebook/computer garbage world--- Lindsey Lohan, give me a call anytime!!!

Anyhow, here are all 4 of the lengthy (but well thought out and written) emails. As a side note, the first 2 emails did not have my daughters assistance in their publishing, so spelling/punctuation errors may occur. You will notice that the third and fourth installments are clearly much easier to read. Enjoy.



"NO LONGER A RAT"
September 9, 2009

Hey guys hope all is well with everyone and you are enjoying the fine weather we are currently experiencing in our neck of the woods.Today is the last day of the first month of my treatment for my kidney disease. I have taken a steroid named predisone for the last 30 days and i think i handled it well.I have paid lots of attention to eating healthy and getting great nutrition,for a very long time now i have not put anything into my body that was not good for me except for some chips at Friday's brewer game and Debbi's chocolate chip cookies.I have only gained about 10 pounds from the steroids and have not experienced any other side effects that they cause sometimes in people.I want to eat all the time!! Debbi just kind of stares at me and the huge portions and amounts of food i consume due to the steroids.
I really enjoy my 15 mile bike ride that i have taken daily for the last 5 weeks except for one day as this is great exercise for my body and burns off the extra calories i am eating. I promised my nephrologist that i would do this so he would not put me on koumiden a blood thinner to guard against blood clots that i am sustainable to due to my loss of protein and the swelling called edema in my legs and ankles -I am taking enough pills! Underneath the swelling legs and ankles there is strong muscles in my legs and caffs,and my chest and arms are pretty buff due to riding my bike and pushing my body to get stronger. My cardiovascular system is very good.....I may be sick but i bet i could kick a lot of you're butts in the fitness area.With that said you do not have to tell me that i do not look very good and have huge bags under my eyes due to my loss of protein in my blood.I ride out 12th street through Terry Andrea State Park,I then walk a nature trail off of the park onto private lands until i hit an ATV trail that takes me to the cottage owners road that leads me to the home(my 2nd home) of my very good Friends Teri and Jimmy Mahler.I usually have a green tea or water and relax watching the hummingbirds or deer that frequent the area. I also shoot my bow and arrow usually about 20 shots a day to prepare for the bow season and also good exercise before i return on the route home.If anyone wants to ride along just give me a call!
I have started a random act of kindness that some of you may find weird but here it is. In the park along the nature trails i have observed many young families and couples walking along the trails. I have been "planting" the real pretty turkey wing feathers or the tail feathers along the side of the trail where i leave the park in hopes that some small child or couple "finds" the feather and have a special moment for them. My plan works as i have had at least 15 feathers disappear from the spot i laid the feather. It brings a smile to my face and makes me laugh! I also have placed a shed deer antler a little farther away from the trail with only the "fork" showing-- duplicating how i found it many years ago for someone with a keen eye. I did not want to part with it but it was not mine in the first place. So i am asking everyone if they have any items that i can plant on my trail. Turkey ,rooster pheasant,grouse,hawk feathers, deer sheds,etc. Now i know Dave K you have several items on your mind that hikers would find interesting ....but they can not be man made! If you have something let me know.
I have done my best to be spiritually,mentally,and physically ready for the next phase of my treatment and have no intent to change this the rest of my life by the way.On Wednesday 9-9-9 i start the chemotherapy for the next 30 days - i do not want to put this into my body but i must to achieve a full recovery,there will be 3 sessions of chemo with the last session ending on the 10th of Feb.....one year to the date of the day that i had my ruptured appendix surgery! Again i am committed to making sure my body gets the nutrition and exercise it needs to make this treatment have its best chance to work. So i intend to keep eating healthy and put good nutrition into my body even if food tastes like "metal" due to the taste buds being effected by the chemo and i plan on my bike ride,it may not be as long or as fast but it will be. So guys i am asking you to keep me and my family in your thoughts and prayers as we embark upon this new uncertain phase--i would really appreciate it.
Lastly....one of my favorite quotes comes from W.C. Fields who i know nothing about but this quote sums up my "Mclife" and the struggles i faced. "EVEN IF YOU WIN THE RAT RACE YOUR STILL A RAT!!! " for a very long time i was the leader in that rat race and did whatever it took to stay ahead and not having enough energy or time for things that really matter.My time away has shown me new things ,i now see the beauty and the good in things that has been buried by the "Mcbull" that i endured......Customers wanting free food or money and treating crew members and managers like dirt to achieve there goal. How come crew members Aunts and Uncles always died on Thursday in Chicago so they can't work Friday,Saturday ,Sunday? The boss setting unrealistic goals and expectations....stuff like that making me very skeptical and bitter. There is something very wrong with the American culture and work ethics the feeling of "THE GUY WITH THE BIGGEST AND BEST TOYS WINS!" attitude...something very wrong! With that said it is my hope that each of you avoid and escape the "RAT RACE" in your life and find some time to enjoy what really matters in your life like faith,family and friends like you!
NO LONGER A RAT!
MARK
P.S. Teri M Don't forget about "my buck"that you spoke about to me in your prayers or i think you called it your homilies? cause I'm not sure but i suspect Debbi is praying for the deer and maybe this will cancel out any advantage one way or the other!!!



"HOLA, COMO PUEDO AYUDAR?"
September 18, 2009

Wow the wonderful weather continues! To me this weather is like it must be in Southern California without the risk of earthquakes and tall blonde's! Joel am i correct? (he lives there)So how is everyone doing?
I was watching "Regis and Kelly" and there quest Serena Williams just came out to a spattering of boos and Serena is stumbling around trying to explain her recent meltdown where she threatened an official with a tennis ball during the U.S. open. This along with the Conyah West incident and the congressman who interrupted the President while giving a speech makes me aware that character is much easier kept than recovered....and also to stay off of T.V. I'm doing great at staying off of T.V and working on biting my tongue first before i speak when tensions mount and i wish you all the same!
Yesterday i had a cat scan at Memorial Hospital ordered by my oncologist Marshall Matthews to look at my spleen.He also needed some lab work and since i had to give labs for my nephrologist anyways i decided to have my labs taken at Matthews Oncology. What an eye opener! As i waited to be called in the waiting room i was among five other patients who appeared to be on there "journey" for a very long time! When i was called for my labs i passed by the chemo room where i saw more patients receiving there treatments and it looked to me like are they going to make it through today? God bless all cancer patients and there families who have gone through this...past and present.Having this reality check and respect for them i have nothing to whine about my chemo treatment which i am in the 10Th day. I am doing well!
I will share with you that my hair has a different texture to it and if it falls out typically it will take 4-6 weeks to do so. I wonder if it is too much to hope to leave what hair i have left on my head and remove the hair from my back! When i was a small child about 6-7 my brother Steve and i were fighting when he pushed me onto a "Tonka Truck" one of those they don't make em like they use to kind resulting in a gash to my head requiring 5-6 stitches to my head. I have long forgiven my brother for this but if i go bald i am looking forward to seeing my long lost scar. Terry K say "chicks dig scars!" and he should know but it has been my experience that"chicks may dig scars but wives not so much!"
Recently i had to call Madison about a problem with my medical bill and was put on hold for the next available Representative ....I waited 15 Min's. listening to music. I hung up dialed again and waited another 5 Min's. when lightning hit my brain! I KNOW A LITTLE SPANISH!! This time i called and pushed #2 for Spanish....a Spanish recording came on and i have no idea what was being said but then the same music i was listening to earlier came on...only 15 seconds passed when a real person says "Hola, Como puedo ayudar?
and i said "ALOU!!! (which some of you know about and this could be another whole e-mail!) how are you doing my name is Mark can you help me with my bill? There was a short period of silence followed by the lady laughing and then talking in English saying sure i can help you! From now on i will be selecting the Spanish button and encourage all of you to do the same.......tell em Mark sent yah!
I want to thank you all for keeping me and my family in your thoughts and prayers and also for the items you donated for me to plant on my bike ride.Now the focus needs to be having my labs show some positive improvements,i am 6 weeks into treatment with no real changes occurring as of yet.Teri M don;t forget about my buck! I only hunted once so far and i had a beautiful buck about 17 inch spread sneak up on me right at dark. I was caught sitting down and could not reach my bow without having the deer run off because the deer was right below me! Debbi does not need to know that i started hunting!
So in closing:
Weather has been fine!
Still taking my bike ride although at a slower pace(careful when riding with Rev Jim :) and planting items.
No more swelling in my legs!
Avoid or step out of 'The Rat Race" in your life...I am no longer a rat!
Character is much easier kept than recovered!
Please pray for those who have serious illness and there families!
I may or may not lose my hair!
Chicks may or may not dig scars------wives not so much!
Use the Spanish button!
Mark's Spanish is terrible and he is an idiot!
Please keep me and my family in your thoughts and prayers!
Teri M.......my buck!
Don't tell Debbi that I'm hunting!
Glad Papa Smurf is back on E-mail!
Great to have family and friends like you!
It would not hurt anything if we all practiced this towards our fellow man"Hola, Como puedo ayudar?"
"Hello,How can i help you?"

Talk to you soon,
Peace
Mark



"MY BROTHERS KEEPER"
October 12, 2009

Hi guys, I hope you are ready for another installment and I hope that I not annoy or pester anyone with my notes. If you don't like or appreciate them just let me know and I will take you off my list with no offense taken. As some of you have probably figured out, this journaling is my attempt to keep my spirits and thoughts positive for myself.

Well the wonderful September has given way to fall in Wisconsin, and I personally love this time of the year- For those of you who know me well, this is hunting time, and hunting is one of my greatest passions. I have hunted some in the warm September weather and saw quite a few deer; the bugs and mosquitoes were not bad at all, despite the warm conditions. I have this feeling that not even the mosquitoes are interested in "my blood" under my current condition! As I stated, I have seen several deer. Deer that I see but cannot shoot, I call "deer that enter my perimeter;" for example, last night 10 deer entered my perimeter, and two of them were small bucks. Deer that come close to me that I could shoot if I wanted to are labeled, "deer in my circle of death," with my bow, that means a clean shot at up to 30 yards or so. I know I am a very good hunter from my years of experience in the field and I just marvel at some of the events I have witnessed. Things like two button bucks (those are fawns that are male) playing with each other- chasing one another around my tree, as the mother feeds near by.. Small yearling bucks sparing (locking antlers best they can and pushing each other around).. I had 6 yearling bucks sparing around my tree at once! ..Deer that bed down right underneath my tree.. Big bucks (that's what I am after) chasing a hot doe.. Mothers that are nursing their fawns.. Stuff like that. Some of you get it, some don't.. I understand. It is just so peaceful, full of serenity and oneness that all my senses become raised and you know you are alive. I don't understand shopping.

This is my 4th year with my new bow, and although I could have taken several deer, I have not shot at a deer as of yet with this bow. I have a very hard time killing such beautiful animals, and my wife and children do not eat the venison, so I prefer my hunting buddies do the taking. I am seriously thinking of bringing a camera, and in the past, I have brought a video camera to film deer activity. But it really gets in the way and what if the the big one is close behind, and what if I am not prepared? There has been some bear activity that has been reported in the woods that I hunt, in the Iola area. And I am sure the wolves are not far behind! Here is an email sent to me from Canada, where they have had several Human/Bear encounters, and I sure hope this does not happen around here!

WARNING:

Due to the frequency of Human/Bear encounters, the B.C. fish and wildlife branch is advising hikers, hunters, fisherman, and any persons that use the out of doors in a recreational or work related function, to take extra precaution while in the field.

We advice the outdoors men to wear little noisy bells on clothing so as to give advanced warning to any bears that might be close by so you don't take them by surprise.

We also advise anyone using the out of doors to carry "pepper spray" with him in case of an encounter with a bear.

Outdoors men should also be on the watch for fresh bear activity, and be able to tell the difference between, black bear feces and grizzly bear feces. Black bear feces is smaller and contains lots of berries and squirrel fur. Grizzly bear shit has bells in it and smells like pepper... Gotcha!

I have completed my second phase of the six month regimen- my first round of chemo is done. The last two weeks were not all that much fun as I believe my body was fully saturated with the drug. I vomited a little, but felt like crap and was tired all the time. I did not have much of an appetite and my taste buds felt funny. My exercise routine took a hit as well. My nephrologist said from my lab that my albumin (protein in my blood) was increasing and it appears I am taking to the treatment. However, two days after that call, I had swelling (edema) in my ankles and legs- a sign that I am not retaining protein. He also said I am low in phosphorous. Phosphorous?! I did not even know your body needs phosphorous! I thought I might have to go to Fleet Farm and pick up some Weed-n-Feed or laundry detergent! Yes, you do get phosphorous from foods you eat and it is needed to keep your bones strong and apparently, the cyclopsomide must reduce it along with my blood cells. I am 35% into my treatment and anxiously awaiting some positive results. Otherwise, why am I putting this crap into my system? I will be giving labs again on Tuesday, 10/12/09. Patience is a virtue. I just completed my 3 days of outpatient at Memorial, where I received my steroid IV injection. I am especially juiced up from the predisone and did not sleep at all the first night. I did sleep from 7am to 9am. Last night, I got about 4 hours sleep, which was pretty good. I am writing this email Sunday evening and it is 10pm. I will be going into the wee hours, writing, I suspect. My appetite is back and I could eat all the time. I am sure I will be packing plenty to take with me hunting in a knap-sack, so I can hunt long hours with all this energy.

I am going to have to find a way to continue exercising.. I may still be able to take my bike ride and bundle up. Anyone is welcome to ride along- even my 80 year old father made the trip once. I had to push him from behind up the last couple of hills, but we made it. But most likely, I will have to use the fitness center at South. I am concerned about getting the swine or a cold, because my immune system is knocked down, and I am at higher risk of getting an infection.

Friday, when I went to Memorial for my IV injection, an older, compassionate RN named Jessica, was selected to do the honors of inserting the IV. I got quite a chuckle from her. She said that I looked a little stressed, and wanted me to close my eyes and relax and think happy thoughts as she performed her duties. I politely explained to her that an aid just took my blood pressure and it was 126/68- perfect- and that I was not nervous or stressed. I then shared with her that since last February 10th, when I had my ruptured appendix and some 25 stitches, numerous IV's for cat-scans, renograms, kidney biopsy (where they rammed a long needle through my back, piercing my kidney), weekly labs given, and I will never forget the bladder test, where I had to have a needle shot into the head of my you-know-what. I kindly informed her that I was pretty certain that I could take one more little prick to my hand, and that most of the time, I watch the person perform these duties. I suggested we both take a deep breath and do the best that we can, as I was pretty certain that she was the nervous one and maybe not all that used to performing this task. By the way, it went just fine.

I still am doing my best to put nothing but good things into my body. You really have to read the labels. Debbi bought some chicken breasts that you think would be healthy- RIGHT. It contained 39% sodium. Turkey lunch meat: 37%. Ham: 39%. So you have to be on the look out. Here are just a couple of examples: City tap water contains chlorine, (aka, crap) flouride (crap), enriched flour (crap), I think it's called redifined sugar (more crap), high fructose corn syrup (crap). Diet soda contains aspartane (crap), phenylketonurics (crap), caffeine (crap), cigarettes (need I say anything?!), beer........good for your digestive tract! :)

I told you that I could eat almost all the time, while I'm on the predisone. And I thought about changing the Lord's Prayer during this time from the line that goes, "give us this day our daily bread" to "give us this day our daily bakery." But I can just hear God.. "What?! What was that? Who said that? Is that the guy who eats all the time? Is this the same guy who sits in one of my trees, in my woods, harrassing my deer, eating all the time from his knap-sack? Is this the same guy who keeps moving feathers and things next to the nature trail? Is this the same guy who shot his brother (with cerebral palsey) in the ass with his BB gun?" (More on that in a minute.) I thought about it, and I think it is best to keep the prayer the way it is.

The changes are upon us. This past Monday, after 15 years of having a new company car every other year or so- with the gas and insurance free of charge- had to be returned to McDonald's. My short term disability which paid me 100% of my base pay, will be ending on 10/15/09. I will be putting in for long term disability and may very well need an attorney to help me through this process, as I have enough to focus on. I have learned that Insurance companies like taking in your money, but really drag their heels when it is time to dish it out. My days of working for McDonald's Corp. appear to be over. As some of you know, it is what I asked for, as I was very unhappy for a very long time. The last 5 years or so at McDonald's has been very tough on me and my family. McDonald's has changed their direction and kept pushing and pushing me to do the impossible. McDonald's may be responsible or play a part in me being sick by putting me in such a stressful environment for a long time. Mohandas Gandhi said something close to this: "An eye for an eye will make us all blind." He also said, "Only the weak cannot forgive." I harbor no resentment against McDonald's and I am ready to forgive and move forward. I did not ask to get sick, but He works in mysterious ways. Things are going to be rough for awhile, and it is my hope that by the middle of February I will be able to go back to work. I am very confidant in my skills and abilities and plan on being a top performer no matter what I do, as this is in my make up. I am cognizant that 49-year-olds that make a lot of money are not in real high demand right now.. much less ones who either are sick or have been. I am open to all possibilities and am pretty good at thinking outside of the box. Who knows, I may have to start a business or something- maybe I could teach a Spanish class? ALOU. First, I must get physically well.

I have learned from a very young age that this life is not fair. This is a very valuable lesson to learn, and some people do not learn this until later in life. Here's a little bit about how amazing my father and mother are. My father was born during the Great Depression and his real father was killed in an industrial accident when he was just 5 months old; a bad start just got a lot worse. My mother was born in Ironwood, MI during tough times. I believe she had 5 brothers and sisters- some I do not even know their names. You see, her parents were drunks.. and I mean drunks. The state had to come in and take the young ones and put them in a foster home. Some of the older ones had to fend for themselves at a very young age. My mother was split from her siblings, then placed with a caring Christian family, who I knew as Grandma and Grandpa Sarri. They had one natural daughter. They both overcame many obstacles, but I am sure there are many emotional scars from their rough childhoods. They found each other and married in 1955 and started a family shortly after. First, my brother Steve was born. Then, (can you hear the drum roll), me. Then, my sister Lisa followed a few years after me (spoiled one. :) Followed by my twin brothers, Danny and David, who are 6 years younger than me.

In those days, they did not have the technology to know about twins until the time of birth. My brother Danny was born first, when they realized there was another baby, David. It is believed that Danny was born normal, but was placed aside while they delivered my brother. During this critical time, my brother Danny stopped breathing, causing severe brain damage and the cerebral palsy. It was not noticed at first, but it soon became evidant that there was something different about Danny. Soon it was apparent that we were a different family now, and heading for a lifetime of struggles and hardships that my parents still face to this day. But we face it as a family. My parents had every reason in the world to become bitter, angry, upset- you name it- with the one who dealt them their faith. But to my knowledge, that never happened. One thing that did happen, was that the whole Reinemann family would go to church every Sunday to either attend service or Sunday school. With my parents mounting medical problems and bills from my brothers surgeries, my father losing his job a couple of times, I remember some very rough times. It seemed as though every Sunday, you had to wear the same clothes every week. And I remember digging through drawers, looking and feeling down the sofa and chair seats to try and find a couple of pennies to put into my weekly offering envelope. Sad as it is to say, my brothers and sister faced the same problem, and I am not sure what my parents did.

When things really got bad- and I mean struggling to put food on the table for 5 kids, plus themselves- it was either their congregation or some very kind and thoughtful church members who stepped up. They would arrange to have a food basket filled with hams, meats, fruits, vegetables, gift certificates or money, anonymously dropped off at our house. I remember my mother crying uncontrollably as she discovered what I brought into her from the garage. A lot of years have passed from that stage in our lives, but I have not since received or have given a more meaningful hug that we shared as I tried to console her pain and emotions. But you could sure feel the love.

My parents have endured a lifetime of sacrifice, pain and suffering, caused by the fate handed down to them. They provided us what they could, and are still doing the best they can, caring for my brother Danny. We never had it easy, and lacked a lot of "normal" things that other families took for granted. Never had the possessions or the so called "finer things" of life. And that's what I mean by this life is not fair. As my parents are getting close to the end of their time on this earth, I believe they will reap the rewards for the way they lived their life. "Many that are first will be last, and the last, first." I love my parents!

Things slowly got better, I remember riding my bike out to Riverdale golf course, and looking for golf balls. I became very good at finding lost balls while walking through fields, ponds, and woods. And I believe this is what started my love of the outdoors. I became a very good entrapenur, and would sell these golf balls to golfers as they passed by. I knew my golf balls, and what they were worth. Titleist were and still are king. And I remember getting 75 cents for a perfect conditioned ball. I also would package the not-so-good ones that the not-so-good-golfers tended to use, and had great success selling and making money from this. Besides, I did not like to carry the heavy bag around with me all the time. Several times, I would watch a good golfer hit deep into the woods and go find the ball and bring it out to him. I almost always received a reward, and I learned quickly that I may have only found one golfers ball, but there were 3 other golfers that witnessed my action. They liked me, and this was good for "business." Having money for my weekly offering was no longer a problem, and I was also able to help my mother out when she borrowed money from me from time to time. It was not long that I bought myself a Sears 10-speed for 80 dollars. I guess my point is that I've faced tough times before, and found a way to better myself and get by. There is no reason I cannot do it again. My concern is for my wife and children- are they up for the change? Not to mention, the 2 dogs and 8 cats that are also considered family. I want a more meaningful life for everyone.

I'd like to tell you a couple of things about my brother Danny. The cerebral palsy made his feet curl inward, making it hard for him to walk. In order for him to stay out of a wheel chair as long as possible, (he still is out of a wheel chair and uses a walker as an aid), he had to have some very difficult surgeries done to his legs at a very young age. The doctors had to make large 8-10 inch incisions on both legs and cut the tendons deep down inside his legs to allow his feet to flex outward. The cuts went from just below his butt, to just above his knee, and then again just below his knee to barely above his ankle on both legs. After the surgery, he was put in a half body cast, with a large bar spreading his legs apart for approximately for 8 weeks. This was the easy part. I remembering accompanying my mother and I am not sure if my other brothers also helped get Danny into a car to get his casts off. As soon as he got them removed, he had to go to physical therapy and start to retrain his legs. I will never forget the pain and suffering that Danny had to go through. I will never forget the "mom, make him stop" or "Markie, Markie make him stop" as the therapist was stretching his legs. Those cries and pleas will never leave me. Then he had to walk along these bars where he could support some of his body with his hands by the cries and pleas continued.

We lived behind the playground and ball fields of Wilson school, and back in those days, there were lots of kids playing because we did not have the innovations that exist today. Well, kids being kids can say some pretty insensitive and mean things to other kids. Prior to my brothers surgeries when I heard kids say things like, "Hey Danny, you retard," or, "Danny, you mental," I would be able to turn the other cheek and carry on with what I was doing. But after Danny made it past his healing and was out in the playground and I heard insensitive comments from kids, they were going to have to deal with me as I could not stand it any longer. I beat up some kids- many that were older than myself- and I had quite a bit of rage and strength inside of me. Yes, I defended my brother with whatever I had to do. I am not proud of this, but I remember once hitting an older kid with a dirt shovel, sending him to the hospital. I get chills down my spine thinking about this now.. and what if the kid had turned and I popped him in the neck? There was talk of his parents suing my parents. Well, good luck, cause what do you think they had? Maybe they could have looked for coins down our sofa. After that, word got out around the playground. Kids knew they better keep their comments to themselves and things got better. Danny also was moved to James Madison, a school that specialized for kids with disabilities and he was not around the school yard as often.

Don't get me wrong, my brother and I still did normal things that brothers do to each other. In retrospect, maybe they're not so normal. I remember picking Danny up and remember telling him we were putting him into the garbage truck as it drove by. Of course, we never did, but it did not take Danny long.. Every time he heard the truck coming, he would run as best he could for his bedroom. Another time, my brother Steve and I had BB guns, and we had a target in the basement. After awhile, we got to shooting each other in the ass at a low power. Once, I can't remember if it was myself, or Steve, that shot Danny in the ass. Danny started yelling, "Mom! Steve and Mark shot me!" I remember tackling Danny and covering his mouth to silence his voice. I am certain that would have gotten me and my brother a spanking.. As you can guess, I already received enough of them. The older I got, my mothers hand did not have the same effect as it did when we were younger. I had to open my mouth and say, "That does not even hurt!" Was that the wrong thing to say! I had no idea a hair brush could be used for more than just brushing hair, if you know what I mean. We did not get spanked that often, and when we did, there was good cause for it.

These days, Danny seems content with himself, and he is on some very powerful medicine to help him with his schizophrenia. His mind seems to be stuck back in those days- the early to mid 70's- and he has an uncanny ability to recall events from that time frame. He really enjoys listening to early 70's music: Beatles, Beach Boys, Elton John, John Denver; although the Bay City Rollers are his favorite. Every year for Christmas, Danny only asks for a CD of one of these groups. And it is next to impossible to find one that he does not already have, but it can be done. With Danny it's all about the cover: It does not matter that he already has every song on the CD 5 or 6 times over.. If you can find a CD COVER that he does not yet have, you have struck gold. Although, there are the years where we hear Danny exclaim, "Markie! I already have this one," as he lunges towards the next CD-shaped present.

Some of you know that we purchased the house right next to my parents house. This may seem weird to some, but we did it for a couple of reasons. One is to help take care of my brother now and then, so my parents can get away for awhile.. go out to eat, shopping, stuff like that. Another is to help with little things, like cutting their grass or snow blowing their walkways as they are getting up there in age. I am proud of the thought that I have been and will continue to be my brother's keeper!!! Even if it was not always done in the best of ways. And I can help my parents a little with some of their heavy burdens.

I got to thinking; Are we all not brothers? It is my hope for everyone that you reflect on ways that you have been someones "brother's keeper" or think of ways to make this world a little bit more fair for someone. Also, it is possible to be someones keeper, but another person could be your keeper. I hope that those in need find the strength and courage and are not too ashamed to ask for help.. as this is not an easy thing to do. Every time I end my conversation with my wonderful nephrologist, Ehab Saad from Froedert, he says goodbye with his Egyptian-saying-accent, "Talk to you soon, 'god's willing.'"

Talk to you soon, and I would love to hear from you,
God's willing,
Mark

After a doozy of an email, here is the re-cap:
- Fall weather is great for hunting
- Still doing my bike ride and exercising (anyone interested in joining me is welcome)
- Avoid or step out of the "rat race" in your life.. I am no longer a rat
- Character is much easier kept than recovered
- Please pray for those with serious illness and these families
- Chicks may or may not dig scars.. wives, not so much
- I may or may not lose my hair
- Use the Spanish button!
- Mark's Spanish is terrible and he is an idiot!
- How is Papa Smurf doing?
- Practice this when you can, "Hello, how can I help you?"
- Sit in a tree, don't forget your safety harness, wink wink. Or go shopping or do something YOU enjoy
- Do not wear noisy bells and carry pepper spray when Grizzly Bears are in the area
- Anxiously awaiting for some positive results- patience is a virtue!
- Read the labels, avoid the crap
-Beer... good for your digestive tract :)
- Leave the "Lord's Prayer" the way it is written!
- Changes are upon us- change is good!
- Please keep me and my family in your thoughts and prayers
- My sister Lisa is spoiled
- This life is not always fair!
- "Many that are first will be last, and the last first!"
- Honor your father and mother
- We can all get through tough times
- My brother Danny is cool and I will always be my "brothers keeper"
- I suggest that you do not call him a "retard" or "mental"
- Great to have friends like you!
- Teri M...My buck, next 40 days are showtime!
- Here's hoping that everyone reflects on how you are someones "brothers keeper" and not ashamed to ask for someone to be y our "keeper" if need be
- We are all brothers!



"MY NEW 19 PAGE EMAIL UPDATE!!!"
December 12, 2009

Hi guys, my 19 page email! Well at least I still have a sense of humor. I will try to keep this one down to a couple of pages, but once I start writing, my thoughts just keep coming. I treasured hearing everyone's thoughts and responses from my last email. Many commented on the length of it, but it was wonderful hearing from you. My brother David, from Madison, and sister Lisa, from Colorado, gave their part and take on our childhood and the major events that touched them. It made it clear to me that I was not the only one effected. Yes, there was pain and suffering, but also the good that has come out of it.. like being a more emphatic and compassionate person. They also brought to my attention that Danny was not the only one that I terrorized. My sister is beautiful, and has long blonde hair.. and I remember once plugging in a spindle from a broken dehumidifier, and sticking the running motor about 15 inches down the end of her hair. Next thing I knew, the spindle wrapped about a 4 inch path of her gorgeous hair tight to her scalp. She was screaming and crying, and we had to cut it out of her hair. And remember the bear story where black bears feces contain berries? Well David reminded me of a time at my Grandparents cottage when Steve and I went down the logging road to the raspberry patch to pick raspberries. My brother David, who was about 8 at that time, made the scary walk alone down the logging road to join us about a half hour later. We spotted him coming down the trail and scared the berries out of him while we hid and made bear noises. He dropped his coffee can and ran as fast as he could back to the cottage before we could stop him. Sorry to both of you for my actions, and when you make it home next time, you can spank me with a hairbrush if you wish.

Papa Smurf, who I love, said it took him 3 days to read my last email. He did not read that much since he read Dr. Suess' Green Eggs and Ham. Papa Smurf lives in South Carolina, that's all I'm gonna say. :)

About my condition, I wish I had something positive to tell you. At the start of my treatment in early August, my 24 hour urine test showed the loss of 10 grams of protein a day, which is considered excessive. At the 3 month mark of my treatment, it shows the protein loss of 14.25 grams per day.I am going in the wrong direction! At this level, my nephrologist said that I am very close to having total kidney failure which can be fatal. If I get pain in my kidneys and urinate blood, I am to get to the emergency room immediately. He put me on some more medicines to control my ever challenging blood pressure. 85% of patients who go my treatment see positive results. I, for whatever reason, seem to be falling into the 15% range that resist treatment. Doctor Saad wants me to stay the course and I have 2 months left. 30 days steroids, 30 days chemo. Debbi asked if it is not working, why finish the last 2 months? I will use the analogy of a football game. There is 10 minutes left in the 4th quarter, and I am down by 21 points. But I have the ball and am driving towards the goal line. For the last 3 weeks, I have not had swelling of any type.. a good sign albumin (protein in my blood) is increasing, which is good. I am taking my blood pressure meds at night and I believe this is helping and maybe a clue to getting better. My nephrologist has pointed out that if this does not work, I have a last chance treatment with a more powerful chemo drug..If this does not work my compromised kidneys will eventually need dialysis. But I am telling you, before I hop aboard another 6 month roller coaster from hell ride again, there is going to be some reassurances or actions done to my spleen, which is loaded with tumors that are too numerous to count. I have a CT scan scheduled next week to look to see if there are any changes to my spleen, and will be meeting with my oncologist shortly thereafter. The initial plan was to treat my kidneys first, and then deal with my spleen. My nephrologist is very skeptical of my spleen, and thinks it may be the cause or hindrance to healing my kidneys. He will having a frank conversation with my oncologist before I meet with the oncologist on the 21st of this month. Things I want answers to: In February, the tumor inside my appendix filled with bacteria and ruptured. These tumors on my spleen, show spots.. debris.. rim-like calcification, and most likely, contains bacteria also. Could this be related to the tumor that was in my appendix? Could they be cancerous? Could this be the cause of my kidneys not working? Who cares if the cat scan shows nothing new, maybe the problem is staring us in the face. The spleen is filled with blood and is a factor in controlling your blood pressure. Why do I have continued problems stabilizing my blood pressure? Maybe we should have treated or removed my spleen first, and then dealt with my kidneys. Who knows- by removing my spleen, the kidneys may fix themselves, without putting more rat poison into my body. The red flags are mounting and I will give the oncologist a chance and listen to his expertise and advice. But I am seriously considering getting a second opinion at Froedert if I don't like what I hear. Yes, there is risk and I could die if my spleen is removed, but I am also taking risks by taking the chemo and steroids as well. I look and feel like crap- bulging eyes with big bags underneath them. My hair, my god, I do not know what to do with it. It is long, dark, stringy, and frizzy. I showed it to my very good friend Jay Adams, and we had a good laugh about it and he called it clown hair. My daughter Carlee said I should just wear a hat all the time. For better or worse, I will be having a serious trim very soon.

The interesting thing about the whole ordeal, is yes, my body is getting weaker, but my mind and spirit is getting stronger. There have been many positive things to come out of my illness. I really believe you see what you're character is made up of when you are faced with adversity. Sure, it's easy when things are going well in your life, but what happens when you're faced with serious issues? As many of you know, I am a character. My illness can make me weaker, but can't change my sense of humor.. can't change me now seeing the good in all things. Can't change me trying to help others and make this world a little better. Can't change my faith and spirit. Can't change my memories and love for family. And it won't change my recent reflection.. looking back on my past errors, and making efforts to improve.

Somethings I am doing to stay positive, which some of you may want to try as well: First, no alcohol for possibly up to 2 years due to my treatment. (I am aware that everyone getting this email is probably thinking to themselves, "Well that ain't gonna happen..") I will be going to the fitness center to do what I can; light cardio and walking. There is a healing group that meets on Fridays, I think at Noon, that I am seriously thinking about attending if I have transportation. That has been one of the biggest changes I have noticed. I am stuck at home because all 3 cars are gone because family members need them for work. Which is good, don't get me wrong, but I really miss my old company car.. when I could go wherever or whenever I wanted.

I looked at an inspirational book at Walden's Books. It is written by Mitch Albom, called "Have a Little Faith," where Mitch is asked by a Rabbi to perform the Rabbi's eulogy, upon his death, He agrees to honor his request, but only after getting to know the Rabbi better which took 8 long years. Mitch thought he was doing the Rabbi a favor, but it actually ends up being a gift given to Mitch. It is also about a young Detroit Pastor who had a very bad past.. (much worse than shooting your disabled brother in the ass with a BB gun.) The Pastor gives hope to the hopeless and preaches to the poor. I began reading the back cover which has from prominent people..

"A timeless story when America needs it most, about faith, hope, serving others, and the yearning to be involved in something greater than ourselves." - Bob Dole.

"Mitch Albom tells the story of 2 incredible men who lives demonstrate what faith is all about. They impacted his life, and now with ever having met them, they've impacted mine as well." - Tony Dungy.

"[This book] teaches us belief can come upon us in unsuspecting ways. And mentors might be hiding in plain sight." - Cokie Roberts.

Mitch finally understands what both men have been teaching all along; the profound comfort of believing in something bigger than yourself. I then opened up the back of the book, and there was a picture of the Rabbi and of the Detroit Preacher.. and this is where it gets strange; The Preachers is wearing a shirt that reads, "I am my brothers keeper," and has a picture of two men carrying a disabled brother. If you remember my last email, it was titled, "My Brothers Keeper," where I got pretty deep and emotional talking about my brother Danny and our struggles. I envisioned the two people carrying the disabled person to be how me and my brothers had to carry my brother around when he needed us. Tears welled up in my eyes and I had a very powerful feeling and goosebumps that overcame my whole body. Is this just a coincidence? Or is there something greater at work here? Have my prayers and good deeds been noticed?Was i meant to read this book? I do not know if there is more to his shirt, but I bought the book and cannot wait to finish it. Once I am done reading it, I will gladly pass it on to anyone who would like to read it.

Since July, I have attended each Sunday Church service, except for two, when I was out of town hunting. I am trying to be an example for my family, and have hopes that others may follow. It is hard to persuade a German/Russians to do anything. Many do and think what they want. Debbi is doing her best in this very stressful time, and handles things much differently than myself. Just a little of what we are facing: I have had no income since early October, my seemingly worsening condition; Debbi had a scare with her breast issues, that thankfully turned out fine, but needed a biopsy done by a surgeon. The surgeon inadvertently hit an artery during the biopsy that ruptured an hour and a half later when she was already at home. There was blood everywhere, and we had to make two trips to the ER that night. She has done a wonderful job decorating the house for Christmas, making Christmas cookies, playing music, visiting her Grandmothers grave site, and trying to keep her spirits high. I must remember this is not just effecting myself, and we need to support one another better.

Here is an excerpt from the book I started reading:

"A Jewish Rabbi is preaching from the pulpit and calls out to his wife, sitting in the congregation. 'Excuse me young lady, could you tell us your name?'

She got back at him by saying, 'I've had 30 wonderful years with my husband and never forgot the day we were married, November 3rd, 1944.'

'Wait!' Someone said, doing the math, 'That's way more than 30 years ago!'

'Right,' she said. 'On Monday, you get 20 great minutes, on Tuesday, you get a great hour.Over time You put it all together, you get 30 great years.'"

This reminds me, things are not always going to be easy, but it is still all about commitment with your wife..If things come to you too easily is there any learning and growth? Later in the book, a man buries his wife. At the graveside, talking to the Rabbi, tears falling down his face, he said, "I loved her." He whispered, "I mean.. I really loved her." The man broke down. "And.. I almost told her once." The Rabbi looks sadly at Mitch who he was telling this story to and says, "Nothing haunts like the things we don't say." This is not going to happen to me, and don't let it happen to you!

I am considering ringing the Salvation Army bell, but who would give money to this scary clown hair guy with the baggy eyes? Then lightening hit me again; There is always only one person ringing the bell and over the years the zest and appeal has diminished. What if i got together a group playing hand bells playing Christmas songs? I can pretty much assure you it would be a great success for not only the Salvation Army bucket, but also rewarding for all those participating. I know there is some very musically talented and gifted people on my E -mail list.

I was at Memorial Hospital to get my IV infusion of steroids, when I learned that my friend, Lee Prinsen, and his wife Rondell were at the lounge awaiting the birth of their first grandson at any time. Also in the lounge were Rondell's parents, Bill and Mary Hughes. The whole family is very gifted musically. So I started pitching my idea and there was interest being shown, and I got the vibe that Bill himself would like to take part.. and for those of you who know him, what an ace that would be. Well as fate would have it, Marcus, the proud father arrived in the lounge, announcing that Megan gave birth to a healthy boy named Parker, and that they could come see the new mother and child. (Congrats to the happy and healthy Prinsen family!)

Jackie and Dave Wassink are also very gifted musically (not so sure about Dave!) and Jackie is already in the hand bell choir of her church. I was thinking that if Bill and Jackie played they could handle 4-5 bells a piece.I could tape the weight of two unused handbells to the inside lining so that when i shook them they would remain silent.As Bill and Jackie worked there butts off playing,i would be putting on some sweet moves playing my silent bells the likes of which no hand bell player has ever done! After a couple of traditional Christmas songs we could do a rendition of a not so traditional Christmas song........"don;t fear the reaper" where the scary ass clown guy would be on the cowbell!!! Anyone else want to join the group?
Here is a code that you may use if you want to reply:
#1 Mark is an idiot and should stick to working on his Spanish

#2 Sounds like a great idea but i am too busy at this time of the year.Why did you not think of this last month while hunting when you sat in a tree for 11 hours a day! Day after Day!!

#3 I would love to do it....tell me when and where practice is!

# 4 This is as stupid as you planting feathers and things along the nature trail and is another prime example of you being heavily medicated!

#5 I do not have a musical bone in my body and do not know how to hold a hand bell.

#6 surprise me and write your own response!

That is enough kidding around... i know that getting a group together for this year is not going to happen due to the short notice and practice that will be needed. I am serious about forming a group over 2010 so when next holiday season comes around we could put on a awesome show possibly with singing and be a trend setter that other groups may follow! Would that not be neat!
Well that's my update...we are doing the very best that we can.Please keep us in your thoughts and prayers. I would love to hear from you but know this is a busy time of the year,your comments really motivate and inspire me and help keep my spirit high.
Merry Christmas to all of you my friends and family!
I am in love with HOPE!
Mark

Family Pictures

Just starting out by posting a few pictures of the family. Back in the day- when I still used to turn the ladies' heads! (Don't look at me now, I'M HIDEOUS!!!) Haha. :)

This first one is from 1986 with my son Tyler and daughter Mallory.

This last one is from a few years ago and it's my daughter Carlee and wife Debbi (aka THE PRINCESS.)

Brand New..

Trying this out!