Archive for Got2BTru

November Update

Hey all…November is going to be a tough month for me.  Mom’s birthday is on the 12th, so it will be hard not to think of her this month, especially so close to her passing.  I know everyone thinks they have the best mother, but the older I get, the more I appreciate her & everything she did for not only me, but us as a family.  She was truly the glue that held this family together.  Though to be honest, Dad has done a great job…he calls regularly, we go out occasionally & still break bread together as a family at least once a month.  I’m very proud of my father, he’s a great example for us & we know that he loves us.

As for an update with me, things are going OK, I guess.  My chemo has just recently finished, so it’s now a matter of letting that garbage get out of my system so I can start feeling better.  I keep trying to do more & more, but get frustrated as I don’t seem to have the strength or stamina.  My wife reminded me that my surgery was only 5 months ago & that I was expecting too much.  The rectal cancer surgeon told me that it could be a year before I’m back at 100% because of how invasive the surgery was.

At least with the chemo being done, I can figure out more of the colostomy side.  For those that have weak stomachs or don’t want to “know too much”, this is where you can check out and/or skip at least the next couple of paragraphs.  :)

The Chemo was causing “output” from the colostomy to be soft, almost to the point of diarrhea.   It’s bad enough if you have that “normally”, but when you’re trying to get it to go into a bag with a 2″ opening, it’s near impossible!    Let’s just say that it makes for a MESS, and it’s incredibly frustrating/irritating, etc.  If it weren’t for this, I’d be better able to adapt to this colostomy.  I’m not saying there aren’t other issues or concerns, but this one gnaws at me the most.

Now that I’m off the chemo, I’m also trying to exercise more.  The goal is at least 3-4 times per week of walking at least a mile+.  I’ve been throwing in the occasional jog, and it really tires me out!  I’m bowling again as well – you’d be amazed how much that does for exercise as well, not to mention it’s good to hang out with the guys.

Going forward, it’s just a matter of consistency.  In what I eat, exercise, etc.  We’ve got a lot going on personally though as we’re trying to get the house ready for sale.  We also close on our new property here in the next couple of weeks, so that’s exciting as well.  And we’re also going on vacation in the next couple of weeks as well!  November and December should be a BUSY 2 month period for us, so we covet your prayer…

Another Long Overdue Update…October 2012

My apologies, I had hoped to keep this more up to date, but that thing called “real life” tends to get in the way, not to mention side effects of chemo, etc.

The good news is that the chemo is done with.  I ended it a couple of weeks early, but my last appointment was on Friday, September 28th, 2012.  The only thing outstanding is to get my port removed.  I’m hoping to get a date for that today…it will require minor surgery & then just take time to heal.

Overall, things are going well from the cancer perspective…they reduced my level from Stage 3 to Stage 2 based on the testing of 35+ lymphnodes from the cancer removal surgery in May.  That’s good news, but cancer does run in my family, so I’ll have to keep a close eye on it.  Regular check-ups, yearly blood-work, etc.

On the home front, I miss my daughter terribly & pray for her daily.  The “puppy” is no longer a puppy as he is a year old now & is almost 90 pounds!  He’s doing REALLY well though, we’re very pleased with how he’s learning, etc.  Labs typically take a couple of years to “settle down”, so we’re hoping this year he calms down a bit more!  He’s still infatuated with our cat, Callie, and she wants NOTHING to do with him!

Work is going well – received a good 6 month review, no issues…and the account that we’re on has resigned a new 7 year contract, so that’s great news as well.

God is good, just trying to keep things in prayer & take each day one step at a time.  I appreciate the prayers, e-mails & feedback from this site.  I am a bit surprised at the amount of spam I receive – I have to manually approve all posts, and I had over 100 since my last post that I had to manually go through & approve or trash…it’s amazing that there are those that think they can get something through…this site is not commercial in any way & I won’t put anything like that on this site!

Been a While…a LONG delayed *update*

OK, so I admit it’s been FAR too long for an update, though I do have VERY good reasons!

As I mentioned in an earlier post, my mother was also dealing with cancer.  Her breast cancer “came back” after 19 years, stage 4, in Novemeber of last year.  She fought it hard for 6 months, but eventually, her heart gave out (during her original cancer treatment 19 years ago, the chemo & radiation treatments caused permanent heart damage.  They put in a pace maker about 10 years ago to help, but it only brought her “capacity” or pumping ability to just under 50%).

Anyhow, long story short, on Wednesday, May 9, 2012 Mom died of congestive heart failure.  The chemo treatments were too much for her heart.   She was only 63.  She was adamant about not being left on life support, so they first removed her pacemakers’ defribulator & they told us she would live another week at most, though she’d be in pain.  The doctor also told us that she had chemicals going into her IV to help “pump” her heart or the muscles, whatever.  Given she would be in pain for that last week & her desire NOT to be left on life support, we decided to honor her request & have them stop the drugs going into her IV.

At that point, I held her left hand & talked to her while my brother Jason held her right hand & she passed in literally 20 minutes.  It was difficult to say the least, as I was very close to my mother.  And she was young at 63.  And she had successfully “beaten” it the first time & we thought she would beat it this time.  But she’s in a better place, so we KNOW she’s better off.  Though I miss her IMMENSELY and think about her daily.

Release Day…

On Saturday I was told that even though initially I was to be in for a week, that I had progressed well enough to go home on Sunday.  Though still in pain, I was glad to be out of the hospital!

Dr. Burleson checked me over mid-morning & confirmed that I could go home, so I called Dawnette & gave her the news.  She came up within about an hour or so & I filled out the paperwork & they wheeled me down to the waiting Caddy.

We had a friend in the hospital (Centennial Medical Center in Frisco), and even though I was supposed to go straight home, we went & saw her for about 20 minutes or so to see how she was doing.

That 20 minute detour was pretty rough on me believe it or not.  I got home & got settled into the downstairs guest bedroom & fell asleep…and I don’t remember much after that!

STILL no bowel movement through the stoma though, which was beginning to concern me as that meant that starting with the liquids on Thursday & solids on Friday, Saturday & Sunday, I STILL hadn’t had anything come out of the stoma (other than air or “gas”)…

A Stoma Tells Its Story!

I AM A STOMA!

Mary Lou Thomas, RN, ET, North Arundel Hospital via OAB Bulletin, Boston

Hi, I’m a stoma! I am great when you think about it. I must admit I have upset many people. Some people even consider me crude, rude and socially unacceptable. Well, excuse me!!

Just about everyone gets bent out of shape when their doctor says, “It may be necessary to create a stoma”. Me!! They make it sound like a dirty word. Listen, it isn’t the greatest for me either. I’m usually created from a piece of your intestines. I guess you know all about that. And then, just maybe you don’t. So I will tell you Becoming a stoma wasn’t my original function. No sirreee!! I used to just lie there in your abdomen, minding my own business. Then boom!! Some surgeon decided – let’s make a stoma. He had a nerve! Why?? How could he consider such a thing? Well, I guess it was because you hurt so much, because you were very sick from a disease like Ulcerative Colitis or cancer, from a trauma like that automobile accident or from a birth defect. Your surgeon knew that by putting me to work, you could be free of discomfort and problems. In truth, so you could get on with living.

If that is why I was created, then why do so many people complain about me? Did you know that I am not given to just anyone? You see, there is a lot of planning and evaluation of each human being before I am created. So I know you can say only a “chosen” million or so are lucky enough to have me. You see – my people are special. My people are not like the normal run-of-the-mill people. I must say it takes them a while to recognize that fact. And, sad to say, there are a few who never do.

It isn’t easy being a stoma! Some of you just don’t understand what a miracle I am! Listen, before creation, I just lay quiet and usually content in your abdomen.

Now I work! It’s rather easy when fecal waste comes through because that’s what I’m used to. But some character decided, why not water waste as well? We then found out that character was very wise because that works also.
You think YOU have problems adjusting! Phooey. Did you realize that I am a delicate mucus membrane? Yet I am durable but some people think I am asphalt tile. Thank God, I don’t have feelings. But my friend skin does. You want complaints? Give a listen to her sometime. She really gets upset because of ulcers, fungus, irritants, barriers, etc. We are a team! And a darn good one. I’m moist, she is dry. I’m pink red, she is natural. I’m smooth, she is a little bumpy.
One of my biggest problems is my size. I am not always the same size from one human to the next. I am not always round. I don’t always protrude nicely. Then why do some of you insist that my pouch opening is always the same? You need to check my size once in a while and fit me appropriately. Your shoes fit, don’t they?

Some of you complain because I’m not pretty. Well, your anus wasn’t Miss America! I think I am attractive. I am red like a rose. I am always moist if I am healthy. And, I don’t smell. My discharge can’t help what you put in your mouth. If you care for me with thought and keep my equipment clean, that just about takes care of that.

In closing, let me say you can live a good life, a productive life. It’s up to you. Believe me, I do not deserve a pedestal life. I am just part of you trying to do my job. All I ask is that you be honest about me. The doctors, special nurses, other professionals and your Ostomy Association are always ready, willing and able to help you.

Recovery…

Thursday was a bit better…I felt a bit more “mobile” & actually left the room & walked the hall ways a bit…I’m pretty sure I was the youngest one there on the entire floor.  For the most part the nursing staff & techs were good, though the night shift for some reason was significantly better than the day shift.

There are a hand full of staff that stood out…Robin, Gordon, and a few others I’ll have to get their names…they were great.  It still baffles me why the day shift wasn’t as “attentive”, etc.  I just felt more like a burden to them than when the night shift was on (7:30 p.m. – 7:30 a.m.).

Thursday was also when i started being allowed to have liquids (instead of just water/ice)…basically soup broths, etc.  Apparently that was faster than “normal”, so that was good I guess.

Each day I started to “feel” a bit better.  I was more mobile each day, walking further & further.  At first, just to the nurses’ station on the one side, then around the one side of the floor & eventually within a couple of days, around the entire floor.  I usually walked at least twice, if not three times per day.

Friday was yet another milestone…I was allowed to have “soft” foods.  Now, what THEY consider soft foods and what I consider soft food are 2 completely different things.  Regardless, there were no complications, though there was also no bowel movements either.

Friday was also nice because I got the catheter removed…it didn’t “hurt”, but lets just say that the last 12″ or so is a feeling that I NEVER want to feel again…seriously!

On Saturday I was allowed to have the next level of foods, which they classify as “low fiber”, so the food progression apparently I was doing really well with & I was considered ahead of scheduled.  I also got the drip bag removed on Saturday as well, which was nice as it meant I wasn’t “tethered” or tied down to anything at all.  I had MUCH more freedom to roam around, etc.  I hadn’t been using the morphine that much as the pain had started to diminish (a little bit each day).

Saturday was also nice as I got the “JP” or drip pouch, whatever it’s called, removed.  It was basically a tube…how shall I say this…up what “was” my rear-end that was connected to a collection ball at the end.  It “collected” any additional fluids my body couldn’t absorb naturally.  Given it’s location (my rear end), to sit or lay was very uncomfortable, as that’s pretty much about ALL you do while you’re in the hospital!   Anyhow, apparently, the amount of fluids in the pouch had gotten low enough that they felt it could be removed.  Yet another nice feeling as it too had restricted my movements and was of course, uncomfortable.  Again though, no “bowel” movement(s) through the stoma.

My Colostomy

So, as part of my cancer “treatment” or removal, I have to live with a colonostomy.  Sometimes these are temporary, until the initial cancer-infected area heals after the cancer has been removed.  However, in my case, due to the sheer size of the cancer (at the time of removal on Tuesday, May 22, 2012 it was the size of a squash ball), the location (only 1 1/2 into my rectum) and the shape (semi-circular), my colostomy will be permanent.

According to Wikipedia, a Colostomy is:

colostomy is a surgical procedure in which a stoma is formed by drawing the healthy end of the large intestine or colon through an incision in the anterior abdominal wall and suturing it into place. This opening, in conjunction with the attached stoma appliance, provides an alternative channel for feces to leave the body. It may be reversible or irreversible depending on the circumstances.

Surgery Day…

My surgery was scheduled at Baylor Medical Center in Plano on May 22, 2012.  We arrived at 10 am & they got us into the prep room by 10:30, which I thought was a bit early given the surgery wasn’t scheduled for noon.  While they got me prepped quickly, surgery never happened at noon…they gave me my anesthesia around 11:30 a.m. & that’s the last thing I remember till they woke me up around 5 pm or so…I was in and out from there until they moved me to my room around 8 pm.

Dawnette stayed with me the first night, which was nice as I was in and out all that night in pain…I kept pushing that morphine button every 5 minutes or so…at least when I was awake!  ;o)

Believe it or not, they had me get out of bed the next morning & walk over to the chair where I stayed the entire day until it was time to go to bed.  The surgery supposedly went well, the doctor said he got everything…the cancer was about the size of a squash ball, or just a bit smaller than a tennis ball.  I guess it was one of the largest rectal cancers he’d had to remove.

That first day, Wednesday, was tough…I had a catheter where I NEVER want one again…it was incredibly uncomfortable.  They had me drinking water & chunking on ice all night Tuesday night & I guess my body adapted pretty well because around 11 am or so I heard this gurgling sound & liquid came out of the stoma.

Oh yes, I’m pretty sure I’d mentioned it already, but in most cases of rectal, colon, etc. cancer, the patient has to have a stoma (basically redirecting their bowel movements through a hole in their stomach) until the cancer area that was removed has healed completely (usually 4-6 months) and then they reverse the stoma & re-route things “back to normal”.

My situation, unfortunately, is permanent.  In the first place, was the size of the cancer…as mentioned, it was the size of a squash ball, which is quite large.  Secondly, the location of my cancer was only an inch and a half inside my rectum, so it was *extremely* low.  Lastly, the “shape” of my cancer was such that it was semi-circular.  If you think of your rectum in the shape of a cylinder, the cancer was not on the “side” of the cylinder, but it was semi-circular around the cylinder.  All of that means that my stoma/colostomy is permanent…which I’m not all that happy with to be honest…I had hoped it was only temporary.

April 24th…

OK, so my apologies to friends & family that are following along.  I should have posted after last Thursday (April 19th), but it was a lot of information to assimilate.

As I mentioned, I had my appointment with Dr. Burleson to go over the surgery, etc.  My surgery is set for May 22nd.  It will last 4 hours!  Recovery time is 4-6 weeks!!  Unfortunately, because of the size, of the cancer, it’s location, shape, etc. I’ll have to have a colostomy.  A bit disappointed with that (OK, more than just a bit), but trying to go into all of this with a positive attitude, etc.

I’m trying to get my hands on the cancer pictures from the colonscopy, etc.  When I do, I’ll post more on the colostomy details as well.

Please continue to keep me in prayer.  It’s GREATLY appreciated!

Pain:5

BM’s: inconsistent daily

April 17th, 2012

This morning was ROUGH.  I got decent sleep last night…must’ve fell asleep around 1 a.m. & didn’t wake up until 7:45 a.m. when my Uncle Jim from Florida called.  I didn’t answer (I WAS asleep), and I went back to sleep.  I woke up about 30 minutes later as I could no longer sleep, but it went downhill REALLY fast.  Within an hour of being up, I had 4 bowel movements.  Again, for those asking WHY he’s mentionng bowel movements, it’s because it’s relative to my cancer.

I have rectal cancer, so when I have bowel movements, the stool passes in contact with the cancer on the way out…and it causes me excruciating pain.  I can usually deal with 1-2 per day if they’re spaced apart, but when I have 4 in the span of less than 60 minutes, it makes things quite unbearable.

I fought through it & took a much needed shower, which kinda refreshed me.  I then headed downstairs & fed the cat & dog & got my coffee started.  I then decided to call Uncle Jim back.  It was nice to hear from him & I really appreciated it.  The timing was good…emotionally, I’ve been dealing with quite a bit over the last couple of days, so it was encouraging.  Funny how sometimes God uses people in our lives to encourage us when we need it most.

I went upstairs & tried working for a couple hours.  At lunch time, I not only made lunch, but got dinner prepped.  Got a text last night that one of my best friends from home in Oneida, Jeff Reese was in town & wanted to get together.  I was stoked to hear that!  I hadn’t seen or heard from Jeff since we flew to NY last November (2011).  Anyhow, I prepped the polish sausage & the sweet & sour sauce that it cooks in.  I’ll turn the crock pot on around 3 pm or 4 pm & let it cook for 3 hours or so till Jeff gets here.

The plan is to just hang out, have dinner, shoot some pool & have a few drinks.  Jeff ended up coming over early & I gave him the grand tour of the Bruno household (though we forgot the upstairs) and we chatted for a bit.  Then we headed out to run some errands…needed to introduce Jeff to some Tuaco for shots / drinks while we play pool later & then we just needed a few miscellaneous items.

When we got back home, we had dinner & started watching a movie.  That didn’t last as we stopped the movie & just chatted for a bit.  We then went & shot a couple games of pool & then went back & sat down & talked some more as I needed to rest.  I had a GREAT time…it was SO good to catch up with Jeff!  He left around midnight & Dawnette & I picked up a bit & then went to bed…

Pain: 5

BM x too many to count!