Sunday, April 29, 2012

The Dog Days are Over...

Kari told me a story last night that was inspiring to me. We had just taken the boys out to get ice cream and were driving back home when a song came on. "The dog days are over" the song sings over and over again. It was a beautiful afternoon and we were dancing in the car making the boys laugh.
Kari asked me if I remembered her playing this song for me in the hospital. I looked at her puzzlingly. I didn't remember. The pain meds I guess kept me so sleepy that I didn't remember much. So I asked her to tell me all about it, so i can at least imagine it.
She said that while her and my Mom were waiting for me after surgery, the song came on the TV. Upon hearing it, she immediately thought the lyrics were proper for our situation, and decided to let me hear it.
The next morning, she said she came into the hospital room and played it for me. My Mom and Wren danced, my Mom teared up as she is good at doing, and Kari let me know that it is all going to be up hill from here on out. And you know, for the most part, she was right. Admittedly, there have been some tough days. We have now both had a few "cry 'em outs". I have felt rough physically some days, but those times have weaned down to an evening every now and again. We are on top of this pseudomyxoma peritonei and have a plan for monitoring the status of my insides, and for attacking it if it rears it's ugly head. Things are on the up'n'up.
To everyone who has told us they were praying, or thinking of us. To those that have came by to visit, cook us a meal, clean our house, and mow our lawn. Your actions and words have been powerful. Your kindness and love have been eye opening.

"The dog days are over,
The dog days are done."

Wednesday, April 25, 2012

A Hard Day At The Urinal

Let me just say, for a guy who is used to having a plan and used to getting things done, it is difficult to wait and watch.
Today was a tough day for me mentally. I heard back from 3 specialists in the field of pseudomyxoma peritonei. They all reviewed my records and all responded with their suggestions. I will need to have a CT scan done with contrast in the next few weeks and a tumor marker test done, both for baseline readings purposes and to look for signs of disease. Then they suggested CT scans every 6 months for 3-5 years to check for mucin buildup in my abdomen. One doctor actually requested to see me in person for a consultation as well as sending him my pathology slides from the first two surgeries.
None of the specialists said that further surgery was warranted at this time due to the fact that I just had two surgeries and that I have not been positively diagnosed with the disease yet.
Then this morning I received an email from the GI surgeon who did my hemicolectomy. I had emailed him the day before to be proactive about checking in with the rare cancer specialist here in town. He said in his reply that he didn't think all of the follow up care suggested by the specialists was warranted. He said I was not at much risk for recurrence and that he had already spoken with the cancer specialist about my case.
Ugh... Nothing like thinking deep down inside that you may be over reacting, and then having a doctor basically tell you that you are.
Strangely though, later in the morning I got an email from his office asking if I could see the rare cancer specialist on Monday early morning, before the office is actually even open? Ok?
It ended up being an emotional day. (I kept most of it balled up inside, but had a small breakdown at the urinal in the men's bathroom at the visitor center of the park I work at. Luckily there was no one else there!). I have since decided to be my own advocate. I will continue on the path the specialists have suggested. It is my health, my life, and my future. Not a doctors. I am going to take the next two days off from research and planning, and I am going to enjoy my family. But I will make sure that I am getting the care and support I need so that my family and I can have a piece of mind that we have nipped this thing in the butt.
I have some things going for me in this whole process that make sense to bring up and think about often. This has been caught very early. Of the few folks who get this, they do not have advanced warning like I do. For me, at the first sign of bad stuff, I will get surgery and care and should have a great chance at living a normal life. In reality, I may never even get the disease. There is a big difference in risk and occurrence.
Needless to say though, it is hard for someone as young and healthy as I am (well, not as young as I used to be!) to go from being in tip top shape and with fairly littles worries in life, to fearing that my life has the chance to be cut short due to the miscues of a surgeon. "Reality Check for Mr. Jenkins, isle 32 please!".
Remember that we only have one shot at this ole world, make it count. I know I sure am going to try harder than I was. And in the process, if you see a guy in a uniform tearing up in front of a urinal, he's probably just having a rough day.

Saturday, April 21, 2012

Pseudomyxoma Peritonei and Other Words Too Hard To Explain

To begin, for reference, PMP =Pseudomyxoma Peritonei. There, now at least I don't have to type it any more!

As promised, I am following up last nights blog post with a sequel version tonight. I am still lacking much emotion about the whole thing still, so it's probably a good time to write, before I get too keyed up. Also, my lack of emotion also probably stems from the fact that I don't have many details yet, and I may just be rolling things out of proportion. That is something we will find out when I finally speak with the specialist though.

So, for now, let's work from the standpoint that I don't have this condition, and my risk for developing it is extremely low. Working from there, maybe you can set aside your grave worries for my well being (which I'm sure all of you have! Just kidding!) and let's learn what the small group of people in this world who are dealing with PMP have on their plates.

PMP is an orphan disease, it's pathological origins and best modes of treatment are shrouded in a veil of medical journals and published articles that only the most highly skilled Google searchman could find. I don't profess to be a genius on the subject, but I will attempt to paraphrase some of the probably 60 published research articles on the subject that I have read over and over.  So keep in mind this is my interpretation of the facts.
An orphan disease is one that is so rare, no one really knows about it. It's sort of forgotten. Only a handful of doctors in the country are considered specialists.
Let's go from here on out in chronological order.
The appendix is connected to the cecum.  The cecum is connected to the right ascending colon.  (think of the child's song)  The beginnings of PMP start when the pathway between the appendix and cecum becomes blocked.  The appendix makes a thick gelatinous mucus (think soft jello) and fills itself up.  This process can be benign, malignant, or somewhere in between.  If malignant or somewhere in between, the bad cells mix in with the mucus.  Given enough time or a heavy handed surgeon, and the thin walls of the appendix can break.  This causes this thick mucus stuff to spread into the peritoneal cavity (that is the bag that holds most of your abdominal organs in it.)  If the mucus has any malignant or pre malignant cells in it, that is bad because it spreads those cells around the abdomen.  But even if the mucus is clean as a whistle, it is still bad because the mucus continues to multiply and grow in your abdomen until it squeezes your digestive tract shut and the result is less than ideal...
The "Pseudo" in PMP comes from the fact that it doesn't act like most other cancers by spreading through lymph nodes and blood vessels to other organs and parts of the body.  It stays in the peritoneal cavity for the most part.  But, it is much more difficult to deal with because unlike other cancers, it doesn't have a solid tumor that can be cut out or dealt with.  It is jello like, and if only one cell is left behind in your abdomen, it can start the whole process over again.  You cannot just wash it out with saline.  That would be like trying to wash jello out of a cup by filling the cup with water and sucking the water out.  The jello would just sit there.  The commonly accepted treatment for this diagnosis is cytoreductive surgery (scooping out the bad stuff) and then giving your abdominal cavity a heated chemo bath where they take chemo medicine, heat it up, and then wash out your insides.  That is how they get the bad cells out of there.  The folks who have had to have this surgery lovingly call it MOAS (Mother of All Surgeries), because it is very difficult to go through.  I feel very much for anyone who has dealt with this disease because it is apparently not a breeze to deal with.

Now that we have all of that mumbo jumbo out of the way, I will state again for the sake of anyone's worries, we are not sure that I even have this.  I am waiting on an actual conversation with the specialist.  His voicemail only said that I was at risk for the disease because of what happened during surgery with my appendix.  Many times doctors will suggest a simple wait and see attitude.  The disease can be slow growing and could take 10, 20, or 40 years to show up.  No one really knows (remember orphan disease).      Keep checking back here for any updates, and as soon as we have more info I will post an update.
Thank you all for your concern and for reading these blog updates.

Feel free to comment, and if I messed any of the information up and you know more about it, please comment and correct me.

Friday, April 20, 2012

The Voicemail

Today I got a voicemail that I was hoping I wouldn't get.
After my surgery at the beginning of April, I sent all of my records to two specialists that specialize in a type of abdominal cancer that is very rare. The reason is because, well let's just say there was a possibility that I was at risk for this cancer after my first surgery.
Guess what the doctor said in the voicemail... "Mr. Jenkins, you are clearly at risk for pseudomyxoma peritonei. We can discuss any further surgery when we speak."
Yup. I knew I was probably at risk because a bunch of "non-specialists" had told me I was. These "non-specialists" were people that either have, or are caring for someone with the disease. So "non-specialist" means "not doctor", because they probably have just as much knowledge about the disease as any docs.
I can get more into the disease in another blog, since it would take a book to explain, and especially since I haven't actually spoken to the specialists yet.
Reality is that I may not have anything, but most that I have told my situation to have agreed that it is likely. I don't have any feelings about things yet, but I tell you what... I have for sure listened to that message about a hundred times so far. It'll probably sink in at some point.
Now I have at least a weekend, probably more, to mull over what he meant by surgery, and what he meant by certainly at risk.
I tried calling him back as soon as I got the message, but the number just forwarded me to the hospitals main number, and it was well after business hours. I sent him an email to contact me again, so hopefully he won't leave me hangin like a crane fly on a spider web for too long.
Oh yeah, and I forgot. The doctor said "Have a great weekend!" at the end of the message. Umm, ok. Will do.

Thursday, April 12, 2012

A Re-Engineering of the Colon

The Colon is a complicated organ. Anyone who tells you it isn't is lying to you to make your procedure seem less traumatic. Trust me, any work done to this "n" shaped organ is filled with lots of crap...literally...and figuratively.
This is the story about the re-engineering of my colon. After the finding of the mucocele in my cecum, then the subsequent hasty removal of my appendix, then the pathology report calling it severely dysplastic (precancerous), and a colonoscopy to find out how involved my colon was with the whole thing, it was decided that I needed a right hemicolectomy. That means a removal of the ascending right side of my colon, from where it attaches to the small intestine down on the lower right side of your abdomen, to where it turns west (or east depending on how you look at the map) in the right side of your upper abdomen. All a very simple laparoscopic procedure the doctors say, involving two small one inch incisions and a larger 2-3 inch incision above your belly button.
I went into the hospital on a Tuesday. Kari, Wren, and my Mom were with me. River was at my In-Laws. Three year olds don't fare well at a hospital for long hours. I was slightly nervous, but I just kept telling myself that I was ready for it to be over and to be back to normal. In pre-op, they put me in a pretty light purple paper hospital gown, light blue socks, and put me in a little room. I was visited by my friend Ben, and a nurse who asked if I minded if they harvested my organs for science. Well, she didn't put it quite like that. Then the party started.

In quick succession nurses and doctors and anesthesiologists came in one by one. They all asked if I understood what they were about to do to me. I would look at Kari with each one, and then state "yah". (I was getting pretty nervous). Then a young guy, who was most likely still in college, and most likely spent most of his day in the gym based on the size of his biceps, came in with two red-capped needles. He said "are you ready?", as if I had a choice. And then, I remember nothing. Kari may remember more, but the next thing I remember is waking up in post-op, and in pain.

"Ryan, remember to breath!!". The nurses kept yelling at me from across the room as they worked with other patients. I was in a big post-op room that resembled more of a car dealership service garage than a place to care for patients. Each patient had their little bay separated by a hanging curtain. Each time I would fall back asleep I would stop breathing, so the nurses would have to yell at me to keep me awake. I guess the good sleep juice hadn't worn off yet. Over the next little while I was visited by Kari and Mom, Ben, Jim, my boss Steve, and well, I'm not sure who else. I was so out of it I don't remember much. If I forgot anyone, don't feel bad. Drugs are bad for remembering things.
The one thing I do remember is the guy coming to get me to take me to my room. He wheeled me past the waiting room, and Mom and Kari were there to follow me. It felt good to see them, to know that the worst was over, and that soon I would be in my room, watching free cable, eating applesauce, and getting visits from my friends...
I don't remember much about the next 6 days. Here are a few highlights. Pain and nausea and sleep. I don't remember so much that I don't even remember writing two blog posts that I just realized I published in my drug induced stupor.
One of the things I do remember is a couple of days into my time at the hospital. I had been on a liquid diet for at least 4 days at that point, and I couldn't touch another spoonful of jello or chicken broth. I told the nurse that I was ready for something solid, like a piece of plain toast. The nurse agreed and said she'd put an order in. At lunch that day I was surprised by a much different looking food tray than I was used to at this point. The brightly colored jello and heavily aromatic chicken broth were replaced by a plate consisting of Salisbury steak, mashed potatoes, and green beans. So what's a guy who has eaten nothing but liquid for 4 days going to do? I gobbled down the whole plate in no time flat! That was a mistake I would regret in the days to come...
I spent most of my time sleeping. I was on a pump of really good pain meds, and I had moved my way up to a nausea med that basically just put me to sleep. I would wake up nauseous and request more medicine, then I would sleep again. If I timed it right, I would wake up right before a meal, eat a few bites, get some medicine, and sleep again.
My Mom was with me most of the time. Kari would bring Wren during the day, and then take him back to the house at night. I can not give enough appreciation to those two women for being by my side the entire time.
I had some rough days and some better days in the hospital, but on Easter Sunday the nurses and doctors had done about as much as they could do to get me back on the road to recovery, and so they let me go home. I was wheeled out to my Mom's car, given a bunch of prescriptions to fill, and sent home. It was quite a relief, but up to that point, 6 days after surgery, I had not used the bathroom yet. I had been eating on and off, but nothing had come out the other side. It would catch up to me the next day.
Monday I felt horrible. I was weak, nauseous, had a headache, and couldn't eat or drink. I couldn't force anything down the 'ole gullet. I called the doctors office and they asked me to go to the ER straight away for some fluids and electrolytes. It was the last thing I wanted to do at the time, seeing as I had just gotten home from the hospital the day before, but I followed their directions and Mom drove me. I am not a fan of the ER, and this day solidified that feeling. I was as sick as I had felt the entire post-op period, and I had to sit there in a smelly, loud room with a bunch of other sick folks, waiting for a room in the ER. They eventually gave me an IV, which helped some. Then, after waiting for quite a while, they took me back, xrayed my belly to look for blockages, and then put me on a cot in the hallway.... Me and my Mom were both sitting there in the hallway of this busy ER on a cot, in the way of just about everyone. But unfortunately it was the only place they had for us, and I am glad they put me there, because it was right beside a private, one seater bathroom. While we waiting on a nurse to see us, all of a sudden, one of my surgeons ran by us. "Hey!" I said. He stopped and told me that he had been looking for me. He and I discussed what was going on and he decided that I had been putting stuff in the top chute, but that it hadn't been coming out the bottom chute, and that there was only so long you could do that before it made you sick. It was good to see someone familiar. At about the same time a guy I work with on the ambulance that also works at that particular hospital happened by and checked on me.
They gave me a bunch of electrolytes, made me drink some nasty vitamins, and then gave me the all important suppository. A short wait later I was sitting in my private, one seater bathroom, and the bottom chute began working. As painful as it was, I was very very relieved. We stayed a bit longer and then we were able to get released just before shift change.
I have been home now 4 days since that time. I feel better every day. I have been going on walks, and doing more and more around the house. After all of this, I am finally beginning to feel somewhat normal again. I am ready to be completely normal and all healed up, but it is an experience I will not forget. Over the last couple of months I have lost one and a half organs and I plan on losing no more in the near future.
Thank you to everyone who helped, visited, prayed, and thought about me and my family during this time. I am very humbled by the amount of support we received.

Me and my Purple Dress

Post Op, in my room

The nurse got cute and cut my dressings into hearts
A bonus pic of the boys

Saturday, April 07, 2012

A Story About a Sore Butt

Day 5 in the hospital has been a tough one. Yesterday everyone was optimistic that I would be going home today. So, in preparation I took my nausea patch off due to the fact that it was making my vision blurry. The doctor wanted to make sure that went away before I went home. Then they put me on Lortab for pain control as a test to see if it would work for me once I got home. They kept me attached to the pain pump, but I wouldn't use it to make sure I was prepared for home.
At 9pm on Friday I took the Lortab and went to sleep. The pain wasn't touched. It got worse over the night as I promised myself to not use the pain pump. At 3am on Saturday, my nurse gave me 2 Lortab to try and curb the pain. It didn't work. At 5am I succumbed to using the pain pump. A few pumps of the pain pump and my nausea returns hard-core.
I beg for nausea meds and the nurse gave me some zofran at around 7am. Nothing. I ate nothing for breakfast besides forcing down a saltine cracker in order to get down a Percocet for pain. One step up on the pain meds.
I was miserable all morning, sweating and unable to move or open my eyes without feeling like I was going to vomit. Before lunch time my doc spoke with me and told me that he would like me to stay one more night so that we could get the mixture of pain meds and nausea meds just right while I had help available at my finger tips.
Around lunch time my nurse gave me Phenergen (sp?) for the nausea and it knocked me out all afternoon until dinner. I woke up at dinner and ate a few bites of food, took a walk around this wing of the hospital, and now I'm back in bed, taking more pain meds, ready to sleep the night away hopefully.

I don't remember if I mentioned it or not, but we got the pathology report back on the rest of the tumor they removed. The doc said it was much of the same, severe dysplasia, pre-cancerous, and that by having this surgery I was able to get clear margins, hoping that whatever the abnormal cell growth was will not spread to any other portion of my body. He said that he didn't see any signs of the mucous growth in my abdominal cavity, but that follow up appointments would be needed to make sure nothing took hold over time. Even still, we are going to gather all of my records and send them to a specialist in a type of rare cancer called PMP Syndrome and see what they say. Because of the growth that I had, I am at a higher risk for this disease.

Tomorrow will be day 6 in the hospital. I am determined to make it the last day I spend in the hospital for this surgery. As long as I can stomach the pain and nausea on the meds they give me, I just want to go home and be with Kari, River, Wren, and even my mother as she stays for a couple more days to help out. Back on the road to healing.

Wednesday, April 04, 2012

An Insides Story

As of Tuesday night I am lighter on my right side. The surgeon took out the right side of my large intestine and some of my small intestine. Looks like I will be confined to this hospital bed for a few more days. I am in a large amount of pain, and the pain med pump I am using only allows me to push the magic pain med button every 8 minutes. I count down the 8 minutes like I was waiting for the Megaball Millions lottery numbers to be broadcast. I have also been dealing with a lot of nausea, so I have been able to request zofran when it was needed in order for me to stomach chicken broth and water.
The surgeon said the surgery went well. I have two inch long incisions in my lower belly and a larger incision above my belly button. The reason they had to take some of my small intestines was because the incision from my appendix removal last month was sitting on top of my small intestines and had somehow fused to it during the healing process. They took the right side of the large intestine in order to make sure they got all of the associated lymph nodes and blood vessels.
We do not have a pathology report from the tumor yet. The doc said it will probably be a couple more days at least before we get the report. I may still be at the hospital by then, but, if I do good with recovery, they will let me go home earlier. I have to eat some solid food and have a bowel movement.
Thank you all for your thoughts and prayers! I am humbled by all of the people thinking about me. There are so many people out there dealing with issues much worse than mine, so I really do appreciate you. I should be back to normal sometime in the next couple of months.