First Full Week @ Home...

So this week has been my 1st full week at home since returning from Mayo so I figured it was time to share something...

This week has been a difficult week emotionally and therapy-wise. I had a hard time coming home since I am an emotional person and the relationships that I had built with Pat and Mark and Gabriella were all very strong that it has been hard to sort through those feelings and separation. I've had some dialogue with Pat regarding returning to Mayo the week of August 9th to 15th for a 1-week re-training course with her so that she can check my progress and help me work through any struggles I maybe having on my own with the the therapy. Also, I hope to be able to work with Mark to do some more of the relaxation biofeedback. As for Gab, we've continued to keep in touch and help each other get thru some hurdles with the therapy and pick each other up when things aren't going our way...

One thing that I've been thinking a lot about as well is trying to work with the Mayo Clinic in a way in which they could create some online network for people who are going thru similar types of diseases or treatments, so they could have a forum to communicate questions or problems or simply have others to talk about issues with. So, I am actually gonna hope to talk to someone when I go up there in August and see if I can't get something started for them. I want to definitely help others thru tragedy or trauma or hardships and really show them that you can overcome almost anything through hard work and with a great support staff...

Went to a 95-year olds birthday and took my grandma out for 1st time in a while... What a crew that was... I brought the median age down by about 40 years...

3 more weeks at home then Mayo again for a week... Hard work continues...

SHARK

TUBE IS OUT!!!

So I took a huge step today... I saw the surgeon and we concluded that it was safe to remove the J-Tube permanently... Although we thought that the first time, now that we are sure of the diagnosis and treatment, it is a nice relief to not have that tube anymore...

I've been struggling with the therapy so far at home... I've found it much more difficult than I anticipated coming home... I've given thought and will consult with my rehab therapist next week to see where I am at, and if we both feel I could use a little more help, I would go back to MAYO Aug 9th to 15th for a 1-week re-training (2 sessions / day)... So I'll just keep battling each session and hoping to see some progress in the days to come... I have to keep reminding myself that this is a process and is not supposed to be easy...

TUBE IS GONE! Couldn't be happier. Either could Dr. Nagle and Dr. Roth (who I got to see at the hospital for like an hour and talk about everything). Moving on...

DONE and DONE...

So today I finished my 2 week treatment program at Mayo... This consisted as I've explained before of both physical and occupational rehab... I had my last sessions today and now I am in a position to move forward and hopefully progress on my own over the next 3 months... There are goals for the rehab portion of the program to which I need to work towards (I'm about 1/6 of the way thru the program)... So, i'll continue to work hard on my own 2 - 3 times per day and hopefully continue to make progression towards the finish line... If in fact I find it difficult over the next few weeks or so and we don't see the progression they'd like to see on my own, I will return to the Mayo Clinic for 3-5 days for another session of treatments with my therapist here... So I'll be keeping busy with both the physical and occupational therapy programs that are available for me at home and hopefully in 3 months we can see the finish line...

As for my visit with Dr. Camilleri yesterday, things went very well... Although I maybe a little behind schedule in terms of the progress of the rehab, I have been able to make huge strides in terms of re-introducing oral nutrition again and stopping the feedings thru the tube all together... I have certain hydration and nutritional goals that I have to meet each day and if I can maintain those over the next 3 weeks or so, then he feels comfortable with my feeding tube being removed permanently... So I will be very conscientious of what types of calories, proteins and liquids I'm eating on a daily basis (I actually bought a program for my computer which will allow me to track all this activity)... My goals are about 1800 calories, 60-70 grams of Proteins, and then about 60 oz of liquids for hydration (additionally I will be on a nutritional supplement that is like a box juice that each have 250 cals and 9g of Proteins that I will drink 2-3 times per day as well)...

Emotionally this has definitely been a roller coaster ride... There are highs and lows in life and the key to success is being able to work through the lows and get back to the highs... My hope is that thru the tools that Mayo has provided, and my work with my therapist at home, over time this all will fit together and be able to be put behind me forever... I am excited to come home and re-associate myself with some sense of normalcy to life, but also know that change doesn't happen overnight so patience will play a big part in my success... Also, I'll continue to keep in touch with Gabriella and be able to share stories (both good and bad) and be able to work together towards our finish line of sorts... It is therapeutic for us both to be able to share this experience that was unlike any other, and until you've really lived it, it's hard to make that connection...

The people that I have had the opportunity to work with over these past 2 weeks have been an amazing part of my life that I will remember forever (and see again I'm sure in the next few months)... Their dedication to helping me achieve my goals, as well as my dedication to trying to achieve those goals, was extremely instrumental in getting me to where I am now just after 2 weeks... I look forward to continuing to keep them updated with my progress reports and know that they are simply a phone call or email away from helping when/if I hit a speed bump of any kind... THANK YOU PAT and MARK and KAREN!!!

I look forward to seeing everyone at home and beginning to feel better... It's all a work in progress and I won't stop until I know that everything has been achieved... But for the 1st time in now nearly 18 months, I can see a finish line that I know is achievable and which will lead me to a much healthier, safer way of life...

Thanks again to all who have followed this blog to this point, and I look forward to continuing to share my stories as I work on all these things at home.... Every one's support has been a tremendous inspiration and I can't thank you enough... To know there are that many people who truly care about me has been my rock...

I actually hope to join some support groups when I get home to help work thru and talk thru some of the issues that still linger... Also, I have a deep desire to try and do some motivational speaking with regards to helping people get thru tragedy in their lives... I've learned so much about myself that I only hope I can share that with others...

To a new chapter of my life... Here we go!!!

SHARK.

Here We Go...

Today will definitely be the longest of the days at the clinic thus far... Starting at 730am, ending at 5...

Seeing Dr. Camilleri this afternoon to discuss the future...

I've forgotten about yesterday... Focused on getting the most I possibly can from today...

2 more days to go here... I can do it!!!

SHARK

Today is Forgotten... 2morrow the Fight Continues

So I just went and had dinner... Enjoyed myself... Was able to think about today and reflect...

I (with support from someone who will remain nameless) have forgotten today, and am ready to continue to fight 2morrow...

6 more sessions...

SHARK

Keep Fighting...

So today I took a few steps backward... I was discouraged, but also have been able to take some time to re-discover what progress I have made in so many different areas... I have to try and re-focus my energy to the progress that I've accomplished, not worry about what lies ahead, and know that deep down there is a person inside of me that can and will beat this (however long that may take)...

Tonight I will give myself that chance to reflect on everything that has transpired over the past 17 months, both positive and negative, and use that to work thru these last 2 days here at the clinic... I can't worry about the things I can't control, and only focus on what it is I can control...

Tomorrow I meet with Dr. Camilleri... Obviously I don't know what it is he is going to say regarding the short and long-term prognosis, treatment plan, etc, but I do know that regardless I will be ready to continue to move towards an end result...

So, it's time over these last 48 hours to focus on the positive... Forget about the negative... And be prepared to face whatever I may encounter in the future...

To a better day 2morrow and the next day and the next day...

SHARK.

Today is hopefully my breakthrough....

So yesterday I made some big strides on a busy day... The therapy sessions are definitely intensefying each time, but that's a good thing... I knew it wasn't going to be a vacation, so I'm not all that surprised... I'm more suprised at how advanced the therapy is... Biofeedback is really working and it's such a powerful thing to know that your mind and muscles are so inter-connected...

After therapy, it was pouring rain, then got nice at 6pm so I went and played 9 holes of golf which was relaxing as well...

Yesterday I got to do this new type of Occupational Therapy that was really cool about relaxation and breathing the right way... I'm going to do that again on Thursday and then maybe again on Friday...

I found out I'll see Dr. Camilleri (my GI who is the man here) on Thursday afternoon... Thursday is going to be a real long day... Starts at 730am and ends at 5pm...

3 sessions today, 6 appt's tomorrow, 2 on Friday...

Basically i'm turning around the final turn heading for home down the stretch if you're a horse racing fan... I'm like at the mile marker with about a 1/4 pole to go...

So hopefully I continue to move forward and the DR gives me the go-ahead to head home on Saturday...

I'll update again 4sure...

SHARK

P.S. I was ready to go nuts yesterday in the waiting room since Michael Jackson was on the TV from 730am to 5pm... I feel bad that he died, but 4 real ?!?!?!?!?

Monday and Tuesday...

So I got back Sunday as I said in my last posting... Got some great pictures of the wedding which I'll try and figure out some way to post them later on...

Monday was my 1st day back at the treatment... I had 3 sessions... 2 of which were awful and 1 of which was just OK so it was kind of a down day for me progress wise... But I forgot about it and re-focused my energy to today's sessions (they added an Occupational Therapy at 745am today) so I have 4 sessions today... So far I had the Occupational and 1st of 3 biofeedback sessions... Been a great morning... Hoping that I can continue the momentum into the afternoon... 2 more sessions and then done by 4pm today...

Thanks for all the postings, etc...

Lucky #13 sessions left...

SHARK.

WEEK 2 --- Ready to Work!!!

So I had an absolutely wonderful weekend this past 4th of July holiday as I was able to leave the Mayo Clinic and meet my dad and Rooney (younger brother for those that don't know) for a family wedding... Got to see some of my older "cousins" (so we call them) and play a round of golf and just have a great time trying to relax and refresh myself for this week.

So I drove back yesterday to Mayo from Madison (about 3 hours) and my friend Cory met me up here last nite to spend the week watching over me like my mom did last week. It'll be nice to have someone here in case something were to happen and obviously to help pass the time.

This week maybe a little more grueling than the last, but I'm re-focused and ready to finish strong. I look it sort of like the grand finale --- similar to OJIBWA's Collegiate Week --- You give it all you can physically and mentally and hopefully at the end of the week you've won. The one difference --- I know I've already won even before I start this week --- I'm at the best place on a treatment plan and that has been my victory.

So onward to another week... I'll obviously keep the blog going...

Miss all at home. Love the support. Can't wait to do something for the league!!!

As Darren J Anixter said to me yesterday --- "You're back to being SHARK and not Jason!!!"

SHARK.

P.S. Gab --- I'll call you mid-day to get the encouragement I always needed for the afternoon sessions!!!

Week 1 Over...

So week 1 is over. Off to Madison for a wedding this weekend starting on Friday til Sunday. Driving back up here Sunday afternoon to start treatment again on Monday.

Been a long week and next week will be even longer, but it's all a process towards an end to this.

The treatment is grueling and I would prefer 1 a days, but if it was that easy I guess they wouldnt have you here for 2 weeks doing 3 a days.

My friend Gabriella finished today and had great encouragement for me for the next week so I'll get thru it and all will work itself out. It's nice to have someone going thru the same thing that can really relate and understand all the physical and emotional pieces that are involved.

I'm off to bed so I can drive to Madison 2morrow and then back here Sunday.

Couple steps forward, a few back. But it's a work in progress and I know the end is in sight. I will continue to fight and make sure that this is something that I beat rather than it beating me.

Thanks to all for the well wishes. My mom has been a great support staff this week and all the emails, texts, etc are amazing encouragement.

Time for bed. Next week finish strong and then move forward with my life that has been on hold for the past 17 months.

I'll update the blog again after the weekend on Monday when I get back into the treatment groove here...

Happy 4th of July to all...

SHARK.

Day 4... Ready to Rock...

Good Morning!!!

So I've started my day with a nice grande Mocha with extra shot of espresso and getting ready to start Day 4... 3 more sessions today... My friend that I met, Gabriella, finishes today so she'll be taking off but we'll stay in touch 4sure to share stories, etc...

2morrow I head to Madison for the weekend for a family wedding since the clinic is closed from Friday til Monday. I'll drive back Sunday and re-start my program on Monday here. Over the weekend I'll continue the program on my own so that I can continue to make progress and no regress after a few days off which is excellent...

Met with a nutritionist yesterday which was a huge help so that I can transition from the feeding tube to regular foods again (which I've had success so far) so it's just re-introducing new things over time slowly and gradually. But she did say Chicken Wraps, Burgers, Hot Dogs are all on the menu for LITTLE LOUIE'S and the SHARK SPECIAL!!! No French Fries ever!!! But very helpful to know what is in what in terms of calories, proteins, etc...

I'll send another update 2nite as long as I'm not dead tired... Keep the facebook, emails, BB Messengers coming... Love the inspiration during the day to help keep my focus between sessions...

Much Love to all... I couldn't ask for a bigger or better support system than all the friends I have today...

Until 2nite... Big Day 4... Here we go!!!

SHARK.

So After 2 Days...

So the treatment has started... I'm in a physical therapy for about 45 minute sessions 3 times per day... They are pretty intense and definitely require a lot of mind-body focus, but they've had tons of success with this type of Biofeedback that I'm optimistic that although I may not be doing so well these first couple sessions, things will improve over time. So I just keep plugging along (no pun intended) and show up at my appt's and do as they tell me.

I've been able to tolerate more food which is a step in the right direction. Meeting with a nutritionist this morning so I'm sure I'll have a whole new diet (that better include Chicken Wraps and BBQ Quesadillia from LITTLE LOUIE'S). It's also possible I maybe put on a gluten-free diet since that is supposed to really help with people who have similar issues.

Speaking of similar issues. I met a wonderful girl yesterday who just graduated college and has been here for a week already doing the exact same treatment and experiencing the same symptoms as I was this past 17 months. It was nice to talk to someone who is going thru the same thing and can truly understand what all this "crap" means. We exchanged numbers and are on the same therapy schedule so I'll see her again a few more times before she leaves to go home to Buffalo, NY on Thursday night. We actually did dinner with her and her dad last night which was really nice. Nice to have someone on a bad day to call and be able to relate to what that's all about.

So today we got 3 therapy sessions and a nutritionist and if it can finally warm up past 60 degrees and winds at 20mph then it would be great to play golf again (as I did the 1st morning and afternoon). Supposedly it'll be back to 80's and sunny starting tomorrow for the rest of the time I'll be here.

Shoot me calls or emails or texts or BB Messengers or Facebook... I'm always checking my phone for messages and love to hear the support and motivational speeches...

I'll update again 2nite with a full report of the days activities. It sort of feels like I'm at Camp again but for sick people...

4 down, 20 sessions to go...