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?

Thursday, February 11, 2010

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 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.

Tuesday, February 9, 2010

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 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 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 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!!