Another New Member

John212 said:

I liked "the button" too

Good for you. Those first few days after surgery are tough, but my recollection is that most of the difficulty was about being tired and weak rather than pain. Though, about that pain. The last thing the nurse did before clearing out the whole crew that was getting me settled was to ask if I wanted "the button" - that button you could push for a little extra hit of narcotics just in case. Hey, I'm a child of the 60s. What could possibly go wrong? I hit it over and over again, more in anticipation of pain than due to any real pain. By midnight or so, I was so stoned the nurse and technician who came in to get vitals and such left with eyes the size of saucers. I must have been a tad rude. 

Glad to hear that you made it through and are home resting. I found that Netflix became my best friend. I started searching for the dumbest old comedies I could find and laughed my way through recovery for weeks. Rest, drink plenty of water, and find a few laughs.

The Button Rocks

The first day was fear of pain more than actual pain in my case also, great minds  They had limits on how much and how often, so could not get a good buzz on   

I do need to schedule some binge watching on NetFlix.  There were a couple of TV series through the years I started to watch, but somehow dropped off due to when they were on, committment to a running story line and other things.  The Shield, The Wire and 24 are three off the top of my head I should add to the list.  As to dumb old comedies, they rock.  I will use the old stand-bys, Airplane, The Naked Gun series and some others (not that I consider them dumb, they are indeed works of art), but then will head into the really good bad stuff.  

Any suggestions?

Trubrit said:

Stage III

You need to ask if it is Stage III A B or C.  

Stage III is better than Stage IV, so good news (if you can call anything about Cancer good).

Happy to hear that you are not going to do Radiation. That for me, was the worst part (by a million). 

Good (bad) comedies? Monty Python comes to mind, especially The Holy Grail; as does Galaxy Quest. Try Red Dwarf on Netflix. My boys love them. 

You have a great, upbeat attitude. That goes a long, long way with Cancer. 

Now you need to post an avatar, maybe even a picture and let us 'meet' you in person (almost).  - OK, you don't 'have' to. Its just a suggestion -

Sue - Trubrit

They did a quick look as a courtesy to me when I was making an appointment for a follow-up (meaning I sort of put them on the spot and check to see if any news )  They could not review enough for the detail of which Stage III it was right then, which is fine.  It was more to get me in the ballpark and mentally ready.  I knew instantly based on the tumor growth and where it penertrated and also the number of lymph nodes involved.  We will go over it in more detail when I have my visit next week.  Sounds like B or C.

I also asked for general overview and looks to be 6 months of chemo.  Again I asked them to get general overview of where I am going and details will follow next week.  (In other words each question I asked was "Not to hold you to this, but can you get me in the ballpark")

The Holy Grail and Life Of Brian are on my iPhone and iPads.  PYTHON RULES!!! (Much to my wife's chagrin sometimes )

I have moments where it is kind of dark, but I am trying to be as up about things as I can.  There were a couple of times where there was pain in the hospital or constant sticks to try to find veins since I was dehydrated where I thought "&(&((**, this is $^$^&&^###," but then got out of there and tried to make my jokes.  Making the Docs and nurses laugh, and encouraging other patients where it seemed appropriate, was a better place to be.

Still trying to get things squared in my head about all this and how to "meet" with things.  But one of the things is the last few years have been bad with various things, and we just keep laughing and shaking our heads.  Not to say there are not down moments, but we are getting through.  Though something like this does jump to the top of the S--t list by definition, it has had some competition and that competition has taken some of the edge off this  or makes it just another thing we have to get through.

We will see what tune I am singing in a few months, but with the help here I am confident it will all be good.

skeets1961 said:

chemo

Hi NEWHERE, i just wanted to tell you what my husband's experience was for when he started chemo.  He had major surgery (partial colon removed and a colostomy bag) which ended up getting infected in the hospital.  The surgeon didn't send him to the oncologist to start chemo until he was completely healed from the surgery.  He even had to eventually get the wound vac which was a Godsend as it heals wounds 60% faster.  THe surgeon said starting chemo too early would hinder his healing.  Not sure if all dr's would agree but i was certainly glad they waited even though it was 2 months from surgery to chemo.  Glad you got some reassurance from the others here on the board before your surgery.  It really helps to hear others' experience and advice.  Take care and hoping your healing is fast.

I forgot to ask when it would start, so really appreciate the information about the 2 months.  Was guessing there will be some healing time before they start, but not sure.  And I did not want to call the Drs offices everytime some question crosses my mind.  LOL.  I got the general lay of the land on the phone call yesterday and will fill in some blanks next week, so all the information here is greatly appreciated.  It helps get me in the general mindset.  I am generally planning now that I will be out of chemo around mid October.  There was a trip we were thinking of, until three weeks ago, dooing in June for a few days with family to celebrate an anniversary, but that is on hold.

BUT come November or December, ROAD TRIP!!!

Trubrit said:

Play it by ear

If you can still go on your family trip at the last moment, I wouldn't rule it out quite yet. One never knows just how the chemo is going to hit you. I've seen people here who continue to work, or travel, during chemo. Didn't happen for me, but could happen for you. 

I can tell you right now, planning trips does not get any better after treatment is over.  It took three post treatment visits with my Onc before he would clear me to go home (England), last year. Even though my scans were looking good, he wanted just one more. Its always just one more. 

My husband and I are planning a trip to the Oregon coast in May. Already I'm wondering what my April test results will be like. May or may not get to go on that trip, but we're planning it, never-the-less. 

Its everones wish, along with you, that you make it through the chemo with flying colours. I hope you get your family trip in June. I hope your road trip  is a blast at the end of the year. 

Take good care of yourself during this healing stage. I remember I just wanted to get started with the chemo and get better. 

Have they mentioned you getting a port? 

Sue - Trubrit

But I am guessing it is in play for next week's conversation.  Guess I will see.  

It seems (not confirmed) that I will be on the two days on, 12 days off, which looks to be the FolFox thing that people have mentioned here.  Googled that term and saw it is 2 and 12 and used for this type of cancer, I am a regular Sherlock Holmes.    

I guess by June probably would have had 3 treatments give or take, though from what people say it looks like the side effects can hit at any time, so being 2 or 3 treatments in then reacting...well who knows.  But I am not going to scratch off June based on what you said, though I got a feeling not happening.  (Will be about a 5 - 6 hour plane flight out of the U.S., but I will find out more and see how bad it could be.)

That is great news about the May trip, should be beautiful. Bring a camera and good lens  Your April tests will be fine, I am pulling for you, cannot wait to hear it is all good and your trip is a go.  

John212 said:

What to expect from here

If your case turns out to be similar to mine - and so far it seems to be - you'll probably have a couple weeks or so to recover from your surgery and the chemo regimen will likely start up about 5 or 6 weeks after the surgery. We put my port in about 3 weeks after surgery. I had to put off the start of chemo for one cycle because my surgical incision developed a small infection and the onc didn't want to start up until I was off the antibiotic. 

When i asked about exercise, my onc told me to do as much as I could, but to avoid the gym if I could because it was flu and cold season and I might be less resistant to it if the chemo affected my white blood count. He also said that travel depended solely on my sense of strength, though he said that he'd give me a surgical mask to wear on a plane if it happened that my white blood count was low. It never dropped down much at all, and I made a three-hour plane trip in between cycles 8 and 9. I also made a weekend road trip after cycle 5 (wasn't going to miss my son's college graduation if I had to go on a gurney). Everyone reacts to the chemo a little differently, so pay attention to how your body responds to the first few treatments. That will tell you a lot about how well you might be able to tolerate any scheduled travel.

One of the things of concern (not real major) is that I know there is the possibility of being a bit more susceptible to getting sick, so thanks for that information.  I have been wondering what may be allowed or not.  For instance, going to a ball game may not be the smartest move (?)  But it sounds like it is somewhat count dependent, coupled with a bit of discretion.  

Was the port something difficult to adjust to?  I was told, briefly, that pills and injections are options, but all the pros and cons will be gone over in detail.  Not sure if there is a clear choice, but I will not be penny wise and pound foolish in this.  In other words, though pills sound inherently easier to deal with, if the port is the proper move I can deal with that also for 6 months or so.  

Glad to hear you made the graduation, I like your drive  

Will definately keep an eye on how I feel.  Right now I am still trying to figure out how hungry I am, how tired and the rest.  I try to do some things, and can get by, but there is a bit of a creeping tired and learning curve in this all.  There is something interestingly surreal about it all.

John212 said:

On the Port

If you're going to be treated by infusion - and that's the case with FOLFOX - then I think the port is definitely the way to go. The drugs you'll be getting, at least some of them anyway, are caustic and can harm the veins in your hand, where IV infusions are usually set up. The port will be tapped into a large vein in your chest so the caustic nature won't be an issue. I rarely noticed the presence of the pump needle once it was in the port, and I'm a guy who used to have to lie down to get a blood draw to check cholesterol! My mother is now on chemo because her breast cancer from four years ago metastasized last year and she got a port installed after her first treatment. The drugs burned out one of the veins in her hand - which can be more fragile as we age.

You'll probably have blood workups weekly or bi-weekly, to check on things like your white blood count and 40 or so of its best friends in the blood chemistry world. This will allow your doctor and the team to monitor how your body is tolerating the chemo, so there should never be any question about where you stand on that sort of thing. I'd say that a major league ballgame would be a terrible idea with a low white blood cell count, unfortunately.

 are caustic and can harm the veins in your hand

Hmmm, somehow this cancer thing is turning into something not as much fun as I thought it would be   Point taken, it does certainly sound like the correct move based on what you have said.  I got real tired of feeling like a pin cushion rather quickly, more so when they had trouble accessing the veins and having to do multiple sticks.  Can they draw bloods from the port?  That would be great.  Guess it will take a little getting used to for showering and the rest, but it sounds like the ultimate easier route.

On the ballgame side of things, my head knows that is going to be off the table (in all likelihood), which includes a chunk of the NFL season starting in August.  I am guessing I am probably going to avoid things until November, if my chemo is over the beginnging of October.  

Thank you again for your insight, and best wishes and thoughts for your Mom 

Trubrit said:

Port - Port

Loved the port. So much easier than having veins punctured every other week. 

You're a man, so you won't even have the bra strap problems. My port was right under a strap and was not at all comfortable. I did the 60's hippie thing. 

I wore a surgical mask to church once, but it was soooo hot under there. My white, red and platletes all tanked, so I pretty much stayed away from people. 

Depends on your Onc how long they keep the port in after treatment. My Onc wanted mine out after my first clear scan. Others on the forum have theirs in for a year or more. 

Like John, I kept a record of everything. Blood pressure, temp, weight (yuk), BM's, all of my side-effects. I had two notebooks, one I kept as a journal (along with a video journal), and one filled with notes and questions to take to my Oncologist appointment. 

You really seem really up on everything, which will take you a long, long way for many, many years. 

Sue - trubrit

I do have strap problems, none of my wife's bras fit me properly and I have to adjust them all..;)

Sounds like the port makes things easier overall.  Just need to get psyched up for that next step, but eveyone filling me in ahead of time is a big plus, less of a shock.  The blood count issue sounds like the big wild card in it all and how it will affect things in terms of interactions.  It sounds like it is something that is probably in play between treatments if not longer?  In other words, after the first two days, the blood count is an issue until the next treatment and for x days (?) after last treatment.  That could be a big adjustment depending on how cautious I need to be.  From what you and John mentioned it seems to be more than just be careful type of prevention move and something to take more seriously

I need to set up the journals - seems to be a very good idea.  Set up something in my phone so I can always access it.  

Saw you mentioned the lidocaine prescription in another thread, really like that tip.