Yesterday and the Weekend...

So yesterday I got a great surprise visit again from #19 BWade. He brought along long-time friend from the U of M DTerrell also. It was great to see both of them. We were able to hang out a few hours and share some laughs. Very nice surprise visit.

Today, my parents are heading off to Austin, TX for both of my brothers graduations. Brett, my twin, will be graduating Law School, and Rooney will be graduating with a Masters in Social Work (after just getting back from spending 4 months in Africa). I was supposed to go to the graduation festivities, but given the illness and the now recovery, it would just be too much in so few days. I am really torn about this because I was at both of their initial graduations from college (Stanford and Arizona, respectively) and it brought me extreme joy to share in their accomplishments. I promise even though I'm not there once they come home I'll give them each their usual celebratory bottle of champagne.

I will be there in spirit. And they understand. We'll be celebrating in about 10 weeks when all this can be behind us all...

Happy Memorial Day to all... GO HAWKS!

Repeat Visit to Dr. Nagle (surgeon)...

So today I had the pleasure of going to visit my favorite surgeon at Northwestern --- Dr. Nagle. Nicest guy, but always is running at least over an hour behind schedule. So I had a 10am appt, and got there a few minutes early. Sure enough at 1015am his nurse asks me if I could please let someone go ahead of me. Given that I am a nice guy, I say OK, only to then get called back to a room at 1030am and not see Dr. Nagle until almost 12pm. Then when I got to see him, it wasn't the most pleasant of visits. Occasionally (more frequently lately), I have been experiencing some growth around where the feeding tube is. So, Dr. Nagle has these special sticks that look like long matches, that is Silver Nitrate, and when applied to the skin BURNS like crazy. But it takes away the growth. So he had to do this again today (remind you I am totally conscience and on no sedatives or pain killers!!!). Afterwards, he decided that in order to remove it hopefully forever, next Friday we'd do an outpatient mini-surgery to remove the growth. At least there will be sedatives involved...

After the appt, I stumbled into a very familiar face --- It was Monica --- my 1st ever nurse when I was admitted @ Northwestern. She was there on an off-day and I was getting ready to leave. It was nice to spend a few minutes talking to her. She was very excited to see me (if I may say so myself) and the hug was great. I failed to follow-thru with a phone number...

Only took an hour and half to drive down there and almost 2 hours to drive home... Fun day... Can't wait for next Friday...

It's been about 10 days...

So I've been home for about 10 days since the adventure at the Mayo Clinic. I had planned to post some pictures for people to get a feel of what it was all like, but unfortunately had to get a new cell phone and of course they lost all the photos I'd taken. So my apologies that I can't share those images with you.

I started some of the treatment last week. Dr was very nice guy. Look forward to working with him on this 1st treatment and in the future.

I go today to see Dr. Nathanson to go over everything that was found at Mayo. He is my GI here locally and so we'll get on the same page and make sure everything is being followed through appropriately.

2morrow I go see the surgeon at Northwestern. He's gotta take a look at the tube site and make sure all looks OK and then discuss the removal of the tube later this summer at some point. Hopefully some of my favorite staff on 14 East will be around as I hope to visit some of them in the morning when I'm there. I'm sure they would all love to hear what has been the outcome of the Mayo visit.

Most importantly, I hope to see Dr Roth 2morrow AM also. I know he has been with me for the past 15 months every step of the way, even on days he didn't have to come see me in the hospital he did, and it will be nice to go over everything with him and ask some questions that have come up, etc. What a friend.

Then after the hospital I'm going to see Rabbi Conover at Temple Sholom to visit and share the findings, etc. Her continued support, along with the rest of the Sholom staff, has been unwavering and dedicated to helping me feel better physically and religiously.

So tomorrow should be a busy full day. Which will be nice since the last few days been trying to fight off this nasty cold. I hate colds.

Will be back soon once I know when all treatments have been scheduled, etc. and as I make progress...

Time to Heal...

I've been home a few days now from the Mayo Clinic. I was able to attend the Denny Rosen roast when I got home Saturday nite. I surprised the group by attending, but it felt good to get out for once and know what was going on with my body finally. Some great laughs and then came home and was exhausted. The past few days have been nice to sleep thru the night. I am still experiencing the occasional nausea and some abdominal pain / stomach pain, but have been able to fight thru these episodes with the new medication, Phenergan, and the breathing exercises.

I start the new medication to help re-set the nausea receptor hopefully Thursday. So that treatment can get underway.

Then I decided (with my parents) on the drive home that it was important enough that the 2nd treatment on the muscles below the colon be done properly so I am going to go back to the Mayo Clinic in June sometime for 2 weeks to have that treatment done. It'll be 10 work days, 3 hours a day, and then at least it is still under the supervision of Dr. Camilleri should something not go right, or he needs to change the course of treatment, etc. So, hopefully by the end of June or so the 1st 2 treatments can be completed and then it will just require some time as I begin to advance my diet.

So far I've been able to tolerate a little bit of Mac / Cheese and a little jello. Still doing the tube feedings for about 12 hours a day overnight. Then I try to eat a very small meal each day. Until they totally correct the muscle issue they don't want me to eat heavy things yet. Mostly liquids and softs.

Dairy Bar in Glenview will be hit-up soon enough once Stu Nitzkin is ready to go...

I look forward to starting the treatment process Thursday. It will be hard and require dedication, but can be done and will be done. 2 more days to wait...

Day 3... Results and Treatment Plan... Going Home!!!

So, it's officially over. Day 3 @ the Mayo Clinic is complete. It's been an exhausting 3 days that seemed like an eternity, but at least I know I was able to get the best care possible from Dr. Camilleri. I'm coming home 2morrow to begin the next phase --- Recovery and Treatment.

Today started with an Autonomic Sweat Test. Basically they hook up some things to your arm and leg and then measure your sweat responses and blood pressure / heart rates in different positions. It was fairly easy to go through and I was happy to know that it was hopefully the last of the many tests.

After the test, my parents and I spent some time walking around Rochester and I actually stumbled upon a store here that was having a 2 suits, 2 shirts, 2 ties SALE and so I bought 2 suits in between appointments. What better way to spend a few hours in Rochester while your anxious for results and a follow-up meeting the DR, than buying 2 suits cheap (no sales tax on clothes in Minnesota for all you shoppers out there).

At 130pm, we went to meet with Dr. Camilleri to find out the results of the many different tests and to discuss the treatment plan. And so Dr. Camilleri explained everything top to bottom and answered the many questions that both I and my parents had. This man is incredible with the patient (me) and was the same with my parents in answering all and every questions we all had. He spent about an hour going through it and explaining in detail what the next few months would be like.

The results were as follows.
1. Neurological dependency on anti-nausea medication that over the past 15 months only got worse and worse as the previous doctors kept prescribing more and more combinations to try and combat the symptoms. So, in order to break this I will be put on another medication that over time will help reset the nausea receptors in my brain back to where they should be. So, I'll hopefully be starting this next week and can begin this 1st phase.

2. Muscle problem between my colon and other lower GI organs. This was found by the unpleasant procedure that unfortunately I don't think would have been appropriate to share, but take my word --- Don't ask to do it! So, again, a treatment is offered that requires some rehab with a medical professional --- I'll either be able to do this at University of Chicago or Northwestern, or it is possible that I may have to return to Mayo Clinic where they specialize in this type of muscular rehab which here would be only 10 days. So, in the next week or so as I begin to find the resources around Chicago, we'll then make a decision if it will be necessary to come back to Mayo for the treatment for this problem.

3. Over the course of the next 2-3 months, I will slowly and gradually be able to ween off the feeding tube and onto regular meals again. I'll start with some soft things, then advance it a little bit at a time and see how my body responds. So, Pete Weiss -- rest assured, I'll be back at Little Louie's by the end of summer back on the Shark Special. Hopefully this can be done over the course of 2-3 months (ideally), but time will tell and dictate this process.

4. I will be practicing something called Diaphragmatic Breathing --- This helps to calm your stomach muscles and allow you to try and control any nausea or vomiting you think may occur. It may look silly and sound silly, but there have been extensive studies done here by Dr. Camilleri and some of the other doctors that show this has a tremendous impact if done with regularity over time.

So basically, the past 15 months I can say I have been to "hell and back," but now I am re-assured that over time this is all going to be cured with my hard work and dedication to all the different treatment regiments that are required.

I'll be leaving 1st thing in the morning to come back to Chicago, and will start ASAP on the recovery.

I want to thank everyone for all their encouragement and support. I hope that I have been able to paint a realistic picture of what the last 15 months has been. I will continue to update the blog periodically over the next few months so that I can share how the recovery and treatments are progressing.

To my parents, a special thank you... There aren't words to describe what these 15 months have been like for them also, and without them by my side the entire step of the way, I wouldn't have been able to get to this point. I love them!

I'll be back soon... Signing off...

SHARK.

P.S. I'll post 1 more blog when I get back home and upload some pictures for everyone to get an idea of what this place is all about...

Day 2 Complete...

So Day 2 is officially over. It started at 915am and ended at 1030pm at the ER (again). Long days here at the Mayo Clinic, but all so far has been well worth the wait despite how uncomfortable the tests may be.

Today started with a Sweat Test. I mean just picture being in the middle of the desert without sunscreen and water in a confined space. So it starts with you being weighed before you start to sweat like crazy. You then lay down on a table, and the nurse applies a powder to your entire body and puts sunglasses on you. Then, you are wheeled into a 6 foot enclosed space that has heat lamps that raise the temperature inside the chamber to 101 degrees. Then as you begin to sweat from the heat lamps, the powder that was applied begins to turn purple. So, you are stuck sweating in this chamber for about 45 minutes, then come out looking like a plum. Afterwards, you are weighed again, and try and shower to get off the purple powder (which I still have on me after about 10 showers). And that was that.

Then, off to the lab for some blood work.

Then, off to another 2 appointment later in the day. I can't really explain the other appointments, but trust me when I tell you 1 of them was definitely not 1 I'd want to repeat again unless heavily sedated.

Then, the best of the day by far. Bobby Wade (yes the ex-Bear and now Vikings WR) comes down to visit me from Minneapolis after his workouts. We were able to spend about 4 hours together and he joined my parents and I for dinner (they all ate and I watched still) and then took off afterwards to get back for his workouts tomorrow. This was definitely a great break from the medical testing and a great opportunity to see 1 of my best friends. I did put the pressure on B-Wade to get to the Ojibwa weekend next month. Stay loose!!! (DJA that's for you)

After dinner, then it was back to the hotel room for about 30 minutes before I was starting to feel more and more dehydrated and had to go back for the 4th time in 2 days to the ER @ St Mary's hospital. I got my IV fluids, nausea medication and some pain medication. After 2 liters of fluids and 3 hours later, I am back at the hotel getting ready to try and get a night's rest before the testing starts again at 9am Friday. Hopefully after Fridays test and appointment with Dr. Camilleri, there is a chance that I could be able to come home this weekend earlier than anticipated. So, I'm going to bed hoping for the best 2morrow and ready to tackle whatever treatment plan maybe necessary from this point forward. 1 more day through the ringer. The end is near. At least I hope so...

Day 1 @ Mayo... Complete, Finally...

So let me just say that the last 24 hours has probably been the longest day of the whole entire last year. Just to summarize: 3 ER vists. 1 Gastric Emptying study ended early. 1 unbelievable appointment with Dr. Camilleri. Finally back at hotel at 230am to update blog and get some sleep before I start at 915am Thursday for more testing.

Let me start at the beginning of the day that started at 3am Weds night (1st night being here). So i get sick and have to go to ER. They give me fluids and nausea medication. Get me stable enough to leave at 530am to come back to hotel, shower, and then get the shuttle at 630am to head to the hospital for the 1st of the tests, Gastric Emptying study. I'll explain what this is all about (being that is my 3rd in the last year, and they have all been conducted differently). First, they give you a radioactive capsule to swallow which will allow them to take pictures of your bowel and colon. Then you come back an hour and a half later for the 2nd course, which consists of the grossest scrambled radioactive EGGS ever (I mean after a night in the ER, and not eating in at least 7 months, this could be the grossest meal ever), and they take another picture that will show your stomach motility. Then you're supposed to come back after 1, 2, 4, 6 and 24 hours for them to take pictures. However, if your me, you eat the EGGS, get sick and the test ends after an hour so that they can take me back down to the ER for the 2nd visit.

So, I'm back at the ER for the 2nd time in less than 12 hours. The same staff is working and is like "You're back ???" To which I reply, "Of course, this is how my last year has been." So, they start some IV fluids again to get me hydrated, give me the usual Zofran for nausea and I was in some pain from the radioactive stuff, so I was given some Fentanol. Then they decided they wanted to do a CT scan since I was having the pain now and it wasn't going away yet. So, I got to do a CT scan which showed that everything was OK, and that the pain was probably associated with the vomiting, etc (which goes along with my other hospitalizations previously). I'm there for 4 1/2 hours as they get me re-hydrated, pain controlled and nausea controlled before getting me out of there at 230 to get to my appt with Dr. Camilleri. This was what we came for and so it was vital for me to get out of the ER in time to still make this appt.

So, we head over to the GONDA Building where is office is located. And when I say office, I mean GI doctors have 2 waiting rooms on their floor that are both humungous and plush. TV's, Computer Terminals for patients to use, chairs (w/padding --- not 2 common for doctors waiting rooms), etc. So I check in for my appt, they gave me a beeper and told me they beep when it was my appt. This is the most-high tech office visit I'd ever been on. They scan all the paperwork you bring with you into the computer and it appears instantly on the computer screen in your room. The nurse takes you back to the room, which has a nice sofa and elegant furniture, computers, printers, and is very high-tech. That seems be a common theme @ Mayo --- High Tech... We spent an hour and a half with Dr. Camilleri going over birth to present day. Specifically focusing on the last year or so that things have regressed as they have. Dr. Camilleri has an unbelievable ability to ask questions and generate conversations with his patients that makes you feel at-ease, comfortable, and honest with him with regards to all facets of your life so that he can take notes and generate some ideas. He seems to already have a plan at least for the next few days with some specific tests which now will test my Neurophysiology (Brain/Receptors) and then we'll meet again hopefully on Friday to discuss results and the plan of action to follow. Overall, I came out very impressed with the possibility that this DR was finally going to figure this puzzle out after a long, trying year.

So the night didn't end calmly unfortunately. Rather I went to dinner with my parents at Chesters --- nice spot here in Rochester, happening place to be --- and then we came back to the hotel and I feel asleep for about 2 hours (missing American Idol, until the last 3 minutes when the announcement is made that Alyson was going home, and the final 3 are Adam, Chris and Danny). However when I awake I am in total cold sweat and nauseous and starting to feel sick again. So, i end up getting sick a little later in night so at midnight I was in a cab to the ER for now the 3rd time in less than 24 hours (has to possibly be a Mayo record and I've been here only a day so far). They gave me the usual tune-up --- Couple bags of IV fluids, nausea and pain medication, and I was back at the hotel at 230am.

I'm signing off for the night --- It's now 4am and I have to be up at 8 to get ready for the days activities.

I'll be back on 2morrow night and place Day 2's adventure (hopefully with some color photos of the different buildings for people to get a visual of the experience)...

So That Didn't Take Long...

Just got back from the Mayo Clinic St. Mary's Hospital ER. Didn't take long to find my way there. I can attest that for an ER this place was like the Ritz Carlton. Needed to get a tune-up of some fluids and Zofran. Now I'm back at the hotel waiting to start my tests @ 715am.

Gastric Emptying Study should be a lot of fun after this night. Can't wait for radioactive EGGS.

Good news they did tell me they'd figure this out regardless how long it may take...

Land of Mayo...

This place is amazing. Building after building after building. Monstrous facilities. I mean this is really overwhelming. I never seen such nice medical facilities in my entire life. Now I know what people mean when they say, "Mayo is the best place." I'm trying to remind myself of that anytime I get nervous or scared of what may come.

I'm staying at the Kahler Grand. Nice apartment style hotel right across from the Gonda building (main building where I'll see Dr. Camilleri tomorrow). Very convenient for getting to and from tests, etc. Got a nice view of the "Peace Plaza". Only where there are a ton of sick people would the main square be called "Peace Plaza."

Going to head to a place called Michaels (not remotely close to the Michaels in Highland Park). It's like an old-time supper club, and I'll get to watch my parents eat. No food or drink for me after 8pm in anticipation of the morning test --- Gastric Emptying Study --- breakfast of radioactive EGGS --- Yummy!!!

Off to dinner with the parents. I'll post some pictures either later 2nite or 2morrow.

Tomorrow we get the party started...

On the road...

So i'm on the road... Just passing Madison... About halfway there... Good thing I brought my IPod because the oldies and Jersey Boys CDs are really annoying...
3 more hours!

Morning Before I Leave...

Happy Birthday DAD!!! Many, many, many more!!! I love you!!!

I just went to CVS for the last time. Picked up all my prescriptions. Saw my favorite pharmacist, Alyson, who always has helped me get my medications and also cared about my health constantly asking for updates. She wished me luck on the trip.

I got a phone call from Diz. He wished me luck on the trip. Told me to keep my chin up. DJA sent me an email. It's nice to know so many people care about me. I can't thank them all enough --- there aren't the words to describe what that support means. It's coming with me to Minnesota for sure.

I'm still nervous. Scared. Excited. All at the same time. I'm gonna try and watch some morning TV (GMA, Regis/Kelly, The View possibly --- you may ask what am I doing watching this stuff, but I can tell you after the 2nd day in a hospital on a morning with no procedures, you are easily addicted to such shows). I mean what else are you gonna do, walk around the halls of your floor (I did that everyday I could about 10-15 laps a day --- 15 laps I would find out later is a mile). Just breathe. Relax. It's all gonna be OK. Keep telling myself that and I'll get thru today. I'm going to the best place possible and they're gonna help me...

The Next Few months until today...

This will be the final posting that will be in the past. Everything after this will be live-current day postings and stories. I am going to briefly explain what has transpired over the last few months since I came home in December. And it pretty much can be summed up in one word, HOSPITALIZATIONS...

These past few months since I came home from the hospital in December I have been in/out of either Northwestern Memorial, Evanston or Highland Park hospitals probably somewhere around 15 times in total. What happens is I will have a few bad days in a row, the vomiting starts all over, and I'm not able to keep up my hydration levels because I can only drink 350ml (about 12oz) of liquids by mouth a day, with 1200ml of Pedialite thru the tube and then the feedings for a total of 10 hours/day. So, after a few bad days I'm so dry and in need of fluids that I am forced to go to the hospital to get hydrated and some nausea and pain relief (sometimes if my tube site had developed some growth). So it was the same routine every time. IV Fluids for 3-4 days and tube feedings re-started the last day, and then go home again. So I'd go home, and sometimes it would be 24, 48 hrs later I'd have to go back, sometimes a week a time would go by without having to go back. To say the least, the last few months have either been me at home on couch doing fluids and feedings, or me in the hospital having nurses take care of me. Roller-coaster ride no question. It's been a week that I was last in the hospital.

Tomorrow I leave for Mayo in Rochester, MN with my parents around 9am. My life will hopefully be changing for the best in the days to come...

Dr. Nagle does it again... But why so much pain this time???

So... Dr. Nagle is summoned to perform the surgery again. Much to his dismay as he didn't want to have to do this the 1st time, let alone do it again 6 months later. But for now, there was no other options. Surgery went well. I was resting comfortably in my room on 14 East...

A day or 2 passes and I am still experiencing some excruciating pain post surgery. I remembered the last time it hurt for about a day or so then was OK. However, this time, a few days pass and I'm still having tons of pain. So, the medicine team has the surgery team back to see me. They notice that around the tube-site, there is some infection which would explain the pain. So, they took some samples of the infection for testing. It would be 24 hours and we'd have some results of what type of infection I was dealing with exactly...

Test results came back. I didn't just have 1 infection, but I was able to have 1 infection and 1 infectious disease. Staph Infection and Sudamonas. So, now the tricky part was treating the infectious disease since the usual course of action required some form of Penicillin (a drug allergy of mine), so before we could start the antibiotics, I'd have to be de-ensitized to the medication. A full day of getting poked and pricked all over my arm. I test OK and am able to start the anti-biotic needed to fight the Sudamonas, Zosyn. I'd get this every 6hrs for 2 weeks. However, I was going home in a few days, so now I would be on a horrible schedule...

For 2 weeks when I came home I had a permanent IV in my left arm, and had to hook up to the antibiotics every 6 hours. I was on a 3am, 9am, 3pm, 9pm schedule and so my sleep patterns were awful. It seemed much easier when I was in hospital and the nurse would come in at 3am and hang the Zosyn, but now I needed to wake up and administer it. All I wanted to do was rest and recover, and yet here I am waking up every 6hrs, in addition to continue to do my tube feedings and fluids at home. My days were full. I was exhausted. Hopefully after these 2 weeks, things would go back to just having to deal with the fluids and feedings...