Mikenh and Surgery

BRHMichigan

Hoarding & Babies

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.  

Mikenh

BRHMichigan said:

Ugh Ostomy stuff

The excellent nurses at the hospital cautioned me that most home care nurses know just very basics about stoma care.  I nearly ran out of supplies, had to place the order myself, never had any real help changing the bags after I came home.

I love Coloplast products, but have trouble with pancaking.  Have had a couple accidents all at home thankfully.  I go into the office tomorrow and will bring at least 3 extra bags.  Paper towels are excellent for cleanup.  I also think disposable bags are cleaner overall.  Insurance covers 2 per day.

All in all, my experience has been positive.  I am thankful for this because mine is permanent.

I am also going to buy extra boxes out of pocket.  Never ever wanna run out.

Mike, your family sounds amazing to assist you like that.  What a blessing!

Thanks for that. I haven't

Thanks for that. I haven't had anyone come over to show me products but I wouldn't mind that but what works for me is what I was trained on. I have a meeting with my original ostomy nurse in in three weeks and I think that I'll ask her to show products and deal with ordering issues.

Mikenh

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

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.

Cindy225

Oh-My...

Sorry Mike you are having challenges with the ileostomy.  I had a good experience with my Hollister products and ordering through McKesson.  The only time I had a slight leak was at the end of my ileostomy when I was traveling and hadn't brought enough supplies and tried to re-adjust the wafer after having already put it on. Not advisable. 

Eating small meals is absolutely the way to go.  I'm finding the same is true after the reversal.  Also emptying the bag when it's a third full.  I also wore the belt and tucked the bag in my underwear so it wouldn't get too heavy. Key is getting on a routine and sticking with it.

Agree with all comments about not letting the bag hold you back from enjoying life. Initially, I was freaked out about public bathrooms but always had my supplies and would try to be strategic when I used them to avoid lines. Also, flying long distance freaked me out but an ostomate suggested flying with multiple stops and not direct. Carried a card for TSA. Worked fine. Eating out required calling ahead to make sure I could order a meal without nuts, seeds, corn etc.    

For those with insurance challenges there is a group in Florida called the Osto Group which is a non-profit that can help fill orders.  I ended up with so many extra supplies that I sent them what I had left.

Good luck to you all getting ready to go back to work.  Didn't have to face that issue with the bag but I do a lot of volunteer work that I had to plan around.  Even more so after the reversal...

Beth great photo! 

Cindy

 

Mikenh

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.

Lily Flower

No cancer in lymph nodes.

No cancer in lymph nodes. That is great news Mike! 

lhduffer

The challenges of an ileostomy

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.

Mikenh

The surgeon asked me to set

The surgeon asked me to set up an appointment in three months for the reversal so not too far down the road.

We had a lot of wet leaves in the driveway which are starting to get dangerous as we have freezing temperatures and the water  collects under the leaves making them very slippery so I went out to rake them off to the side. Jim was right in that it's hard to rake without using some abdominal muscles. I did try a nunmber of different angles. I imagine pulling the rake behind me wouldn't have used the abs muscles but it's not an efficient way to rake.

I need to do more on the ostomy stuff.

airborne72

Mike:

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

Jim

Cindy225

Woo-hoo!

Congrats on the pathology report Mike!

NewHere

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.

Awesome news about the lymph nodes

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.  )

Mikenh

I got the first Short-Term

I got the first Short-Term Disability check and am waiting for the second (sent Monday so I might get it late this week). I also got a $676.50 check from one of the hospitals that I went to. In general, if a hospital sent me a bill that I recognize, then I pay it. I suspect that insurance picked up the bill so they had a duplicate payment. I did not keep perfect track of bills so I was aware that this was something that could happen. So it's nice to clear some of the stuff off my todo list.

Mikenh

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

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.

BRHMichigan

Congrats on the pathology report!

You are well on your way to recovery!  

Kinda news everyone likes to hear.

airborne72

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.

Too much of a good thing...

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

Mikenh

airborne72 said:

Too much of a good thing...

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

In the past couple of years,

In the past couple of years, I'd often get into the office between 5 AM and 6 AM, do some work, and then do various exercises in the office including crunches, stretching, bicycle situps, mountain climbers, pushups, side plank, brazilian crunch, single-leg squats, and then keep working or go for a shower in the locker room. My usual is 90 crunches done fairly quickly.

There are two types of crunch machines at the YMCAs where I go for machine work and other things. One is your standard crunch machine and it goes up to 250 or 265 pounds (not exactly sure). I haven't maxed out the machine probably in 20 years when I was doing them fairly regularly. I was doing about 190 pounds before the surgery. I need to find the minimum weight - if it's ten pounds, then I could try the machine to see if I could do it and then go up 5 pounds at a time until it was too much. But the machine might start at 30 or so and I'd be leery of starting out with a jump.

The other type of machine has a scissors action where you are sitting but you do the crunch with your arms out and high and your feet as an anchor. There's no real resistance unless you put weight plates on the back of it. That may be worth trying but it might be hard to do because I'm not supposed to lift over ten pounds and that really limits how much weight you can put on the machine. Unless I bring someone to do that for me. I'm not going to worry about abs stuff anytime soon unless I can find something that starts very small and goes up gradually. All of my bodyweight exercises imply too much of a weight load on the abs.

darcher

Good job on pathology.  I

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.   

Mikenh

darcher said:

Good job on pathology.  I

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.   

The scariest mutation that I

The scariest mutation that I’ve seen is BRAF and only affects 10% of CRC patients but, if you have it, you need to move fast. There’s a lady on my other board with a husband that had 3C and he went through what we’ve gone through and six rounds of adjuvant FOLFOX and it spread quite a bit while on FOLFOX. She went to MSK and they have clinical trials for newish drugs in combination to fight BRAF. The researcher for the trial works there. So the local hospital did order the rest for BRAF or a general test to find the mutation at some point. It may have been due to the spread when routine treatment should have worked. Or maybe they ordered it from the biopsy. 

The retail costs for my treatments are $100K right now and it was just bumped by $30K so the surgery and hospital stay are reflected there. There may be additional bills to come. The negotiated rate is about 25% off of retail. Still a lot of money. We pay about $21K for health insurance but have used very little in healthcare service over our lifetimes. So it balances out to some extent. But we do need better and cheaper care and I think that science and tech are driving that. Eventually.

BTW you should be getting the staples out soon. Mine came out yesterday and you’re three days behind me. I actually don’t miss them.

I’ve seen many discussions on the mental pain aspects of this. I know what real PTSD feels like and this cancer, while doing all sorts of things to me, didn’t arise to that level though it was likely due to regular exercise. But I don’t doubt that some do get clinically depressed or with real PTSD from cancer.

My oncologist talked with me briefly about people without the resources, or that have co-morbidities or that don’t follow the directions and he was fairly blunt about the usual result. The treatments are very hard on patients and place a variety of stresses on people and families and they may not have the resources in time, workplace support, logistical support or financial support to use the great resources of our medical system. I do think that the forums help quite a bit but people have to be willing to use the advice and help here.

 

Mikenh

I went over the dietary

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.

darcher

  My incision is glued and my

  My incision is glued and my rectum/colon were reasssmebled using staples.  Seems backwards but that's what they do here.  I don't think they'll be reaching up in there with a pair of pliars to remove them. I guess I'll be setting off airport metal detectors going forward.    

Saw the surgeon yesterday and he told me to make an appointment with the chemo people so that was done right away and I'll be in their office today.  We'll see what they have to say.  So your cost was about 100k?  I don't know what mine was yet but it was probably similar overall.  The total I've paid for insurance since signing back up in 08 is right around 90~100k but that's for a family of 4 and no subsidy. It's gotten some other use with the little ones needing checkups, shots, and what ever plus the wife's various tests and such she's had done over the last few years. That being the case, my one incident pretty much used all of it and I'm still not done so insurance is in the red with us.

 I think the hospitals here are adopting a policy of not disclosing the whole treatment procedure upfront in order to keep people coming back. I suspect it's mostlly the shock or fear that has people wander off or hide.  The mortality rates are skewed because of those who don't do what they're supposed to probably more so than what the actual treatment failure rate is. Considering I was given kudos for showing up all the time and taking my pills that tells me there are many who don't.  If it's an issue of cost, from what I understand there are a lot of venues for getting what's needed if affordability is a problem. If a person's job is going to interfere, that's about as low as it gets when it comes to putting profit over people.  Can't say I know much about that since I haven't signed the back of a paycheck in a few decades.

 I'm going back to the chemo doctors in a couple hours to see what color of liquid they're going to pump in me. This ought to be fun.