Mikenh and Surgery

I am looking forward to when I feel comfortable ordering a 3 or even 6 month supply!  It's truly funny what gets us excited these days.  

Honestly, our granddaughter came over tonight, and she brings us so much joy and happiness and laughter...can't help but think these visits are great for our health.  Glad you decided not to be a hermit.  Fir me, my bowel issues were so bad before surgery, the bag is a huge relief that has granted me freedom.  

airborne72 said:

Ostomy Supplies

From what I have determined, there is a set amount of ostomy materials authorized by Medicare, and that makes sense to me.  Overtime and with numerous individuals living with otomies, their experience and data has eventually been compiled.  Consequently, the normal consumption rate has been determined.

However, the resupply process is the weak link.  Place the order, wait for it to be filled in accordance with the Medicare guidance, and then hope the mail delivery system does not get delayed (weather or labor issues).  I have little control over this phase of the process and I don't like it.  My solution was to identify a medical supply store locally and to ensure that they could provide what I need immediately.

I almost had a significant leak on Saturday right before making a one hour ride to visit with our granddaughter.  I discarded one of my "few" remaining wafers and applied another one, all the while thinking about the consequences of running out of supplies.  But the more significant issue was my psychological state - I wanted to just stay at the house and be a hermit.  That's when I realized that I was letting a silly piece of plastic control my life.  I counseled myself and then made the trip without incident.  Seeing my 10 week old granddaughter was absolutely worth the effort.

It's funny how things take on different value through life.  Two months ago I had no idea what a two piece ileostomy pouching system was; now I am hoarding them.

Jim

Right now I'm in the mode of eating small meals and taking fiber around the clock. Seems like every four hours. This so the bag doesn't get too full. I'm not sure I can get enough calories this way though but it gives me some peace of mind at a little loss of sleep.

Psychological state is so important. Sometimes I feel like I have things together and other times it feels like things are falling apart.

I think that I wouldn't have been so annoyed if I got the right stuff but I can bring the wrong stuff back to UPS tomorrow. That was kind of a trigger for a couple of things that went wrong.

I met with the surgeon today and she had a lot of good news on the pathology report. The suspicious regional lymph nodes weren't cancers so 0/16. She made the suggestion that I wouldn't need Oxy but that I should meet with one of the Dana Farber Oncologists to discuss it. Her assistant also said that she would send my short-term disability company a return-to-work permission slip and keep an eye out for a FAX from McKesson.

On transportation today:

Leave for bus station at 6:45 AM. Take the 7:20 bus to Boston South Station. Walk to South Station Subway Station. Take Red line to Park St. Switch from the Red Line to the Green Line to Brigham Circle. Walk 3/4 mile to Brigham and Womens. Surgeon's appointment, clinical trial appointment, drop off tennis racquet for nurse (he liked playing but couldn't afford a nice racquet so I gave him one from my closet), walked back to Brigham Circle, took train into Boston, then train out of Boston to Newton. Walked 3/4 mile to my mother's house where we talked for a while and then I drove home. My Garmin says that I walked 3.5 miles.

One side note: they're paying me $400 for the clinical trial. I hadn't expected this but it appears that it's standard procedure. It will, of course, be taxed. So pretty good news today - if I knew that there was no spread, I'd be doing the happy dance.

So I'm going to go for a consult at Dana Farber. There will be mop-up chemo - it's just unclear exactly what that will be right now.

Getting an ileostomy and mastering the learning curve can be a challenge but it sounds like you are on your way. Leaks can, and do happen, for sometimes unknown reasons. As my stoma (Active Alice) changed it began retracting and I had a terrible time with excoriation until I started using the convex bags.  As others have mentioned try different products from the different suppliers.  They are very helpful and do send free samples.  I liked the Coloplast SenSura Mio but everyone has their favorite.  I also wore the belt like Cindy did and also either tuck the bag in my underwear for support or sometimes used some of the ostomysecret products.  I also like the Coloplast Brava barrier strips to go around the wafer for extra protection.

You are right that extra hands help.  My husband helped me with mine.  I also always did my change first thing in the morning before having anything to eat or drink.  "Alice" loved using anything I ingested as ammunition to make my change a challenge.  You are also correct in always taking extra supplies with you.  I, fortunately, never had a leak in public but was prepared just in case.  My home ostomy nurse had me use "buddies" which were paper towels cut into small pieces to put on the stoma to catch output while doing a change.  She also suggested eating marshmallows to help slow down the output if I needed to do an unscheduled change.  This really did not work for me but it did for others.

By the time of your reversal, you'll be a pro!  Best wishes.

Mike:

You need to go back to work so you can rest.  And, congrats on the good node report.

Jim

Mikenh said:

I think that I wouldn't have

I think that I wouldn't have been so annoyed if I got the right stuff but I can bring the wrong stuff back to UPS tomorrow. That was kind of a trigger for a couple of things that went wrong.

I met with the surgeon today and she had a lot of good news on the pathology report. The suspicious regional lymph nodes weren't cancers so 0/16. She made the suggestion that I wouldn't need Oxy but that I should meet with one of the Dana Farber Oncologists to discuss it. Her assistant also said that she would send my short-term disability company a return-to-work permission slip and keep an eye out for a FAX from McKesson.

On transportation today:

Leave for bus station at 6:45 AM. Take the 7:20 bus to Boston South Station. Walk to South Station Subway Station. Take Red line to Park St. Switch from the Red Line to the Green Line to Brigham Circle. Walk 3/4 mile to Brigham and Womens. Surgeon's appointment, clinical trial appointment, drop off tennis racquet for nurse (he liked playing but couldn't afford a nice racquet so I gave him one from my closet), walked back to Brigham Circle, took train into Boston, then train out of Boston to Newton. Walked 3/4 mile to my mother's house where we talked for a while and then I drove home. My Garmin says that I walked 3.5 miles.

One side note: they're paying me $400 for the clinical trial. I hadn't expected this but it appears that it's standard procedure. It will, of course, be taxed. So pretty good news today - if I knew that there was no spread, I'd be doing the happy dance.

So I'm going to go for a consult at Dana Farber. There will be mop-up chemo - it's just unclear exactly what that will be right now.

I had 11 out of 21 which came back cancerous.  I am having a second opinion at Mass General now and also will try Dana Farber in all liklihood.  I am guessing Memorial Sloan Kettering is probably correct, but might as well.  Perhaps we can be in a study together  

On the Oxy, my doctor said he never wants more than 10 with it in a 12 treatment cycle due to the incremental benefit being outweighed by neuropathy and the rest.  He tries to get 8 in if possible (that is where I tapped out.)  At the time he went through the stats and how much a percentage increase it helped.  Also (which I am guessing you have seen on the site mentioned) places such as Japan use 6 treatments, not 12, and studies are going on in the U.S. now for awhile to bring treatments down.  So if you do get recommended to use it, keep those things in mind and also make sure to mentioned anything you feel to the doctor.

(Pretty sure based on everything you write, you know all this, but I would feel a bit remiss in not mentioning it just in case.  )

airborne72 said:

Mike:

You need to go back to work so you can rest.  And, congrats on the good node report.

Jim

You are correct. I have fewer steps today than usual (two miles so far). But my steps are longer now. Unless I go to the gym tonight. Unlikely as I have a few errands to run. Getting back to the office is nice because I can prepare my own hot drinks, and food and there's this one set of bathrooms with a huge handicapped stall, that's almost always empty. It's on another floor but I don't mind the stairs. I'm also trying to figure out what I can do in the fitness center. I'm coming up blank right now.

Mikenh said:

You are correct. I have fewer

You are correct. I have fewer steps today than usual (two miles so far). But my steps are longer now. Unless I go to the gym tonight. Unlikely as I have a few errands to run. Getting back to the office is nice because I can prepare my own hot drinks, and food and there's this one set of bathrooms with a huge handicapped stall, that's almost always empty. It's on another floor but I don't mind the stairs. I'm also trying to figure out what I can do in the fitness center. I'm coming up blank right now.

Mike:

Nothing but crunches - as many as you can do in two minutes; 30 second rest; repeat.  That will quickly firm up your stomach.

Just teasing.  Whatever you do make sure you proceed with caution.  Walking on a treadmill with a significant incline will elevate your respiratory and circulatory rate and physically challenge everything from your waste down.  In the meantime, I would be very cautious about the "core" muscles.

Jim

Good job on pathology.  I second what airborn72 said.  Even if we feel fine that doesn't mean we're that far off from falling on the floor in excrutiating pain from overdoing it.  I know I won't considering I'm being held together by staples and glue. 

 I never did get the report on what type of cancer or variant it was.  If it was something odd I would have heard something so it's probably garden variety.  I was just glad to hear that nothing bad that could have been was.  The lymph nodes was an especially big concern and after reading up a liitle bit on what they do now I know why the most common metasisis site is the liver.     

 I read what you wrote concerning genomic testing and I think it would be a good idea to check everyone but there are a couple things that preclude it not the least of which is cost.  Fighting this disease is very expensive and if the predictions are correct, that nearly 40% of the population is going to get it, there is no way current insurance premiums collected will be enough to cover that.  There is also the initial biopsy which would indicate if its well differentiated or not. The ones not would be good candidates from what I understand. 

I wonder if there are any papers on the mental pain of this?  That's a big one and probably ignored to a large extent but it is very important because it impacts the effectiveness of the treatements. If what I read is true.  Too many people either don't take their medicine, keep appointments, or drift off into alternative voodoo medicine which may be caused by their state of mind.  Only about 20% of prescriptions are taken per the doctors orders according to what I saw at KP.  That's too a low number.   

I went over the dietary guidelines again and they recommend no caffeine. That's a tough one for me as I usually drink about four cups of strong stuff per day and I like English Breakfast Tea. So this morning, it's Tazo Passion Tea mixed with Tazo Wild Sweet Orange Tea. A rather flowery mix but without any kick. This is going to tough to do for three months.