July check in

Sorry i have not been here in so long. Just got back from a 23 day vacation, this is the first trip we have gone on since I got sick 5 years ago next month.

I am doing good and feel good.

Praying for all of you on this board.

Hugs azgrandma "Lynda"

123Miley said:

7 Year Survivor - Every Day is a Blessing

I do not post on here much.  My last post was in November right before I went into the hospital for surgery.  My official diagnosis was surgery day - 7 years go this July 10th.  Yay!

I have not read all the posts - but skimmed quite a few and it looks like a lot of you are having some good successes which is awesome to read!  As for me I believe I have been granted so many miracles over the past several years and well every day is truely a blessing.  

This is long - but here is what has been going on with me since Dec of last year.  

I was on Doxil last year (second reoccurence) and started feeling sick and having a lot of stomach trouble towards the end of the year.  A colonoscopy discovered a tumor that had grown into my large intestine.  I was not a good candidate for a second surgery - primarily due to excessive scar tissue.  But we didn't really have a choice so I was scheduled for surgery on December 3.  

What was to be about a 3 hour surgery and a 1-2 week hospital stay turned into a 6 hour surgery followed by a month in the hospital.  It took them a while to locate it but they successfully removed the part of my large intestine with the tumor.  But the worse news was that I had an insane amount of scar tissue all in and around my small intestine gumming everything up like glue.  This is what had been giving me so much trouble - probably more so than the tumor.  When my doctor found this - he called in the chief of surgery - who was thankfully on duty and in the hospital - to help out.  Most of the extra time was due to them trying to remove as much of the scar tissue as they could.  The result was removal of a little less than 5 feet of my gut and multiple resections.  I was lucky I did not come out with a bag.  Then I developed an infection and a bowel leak.  Successfully got the infection drained by a radiologist and they started me on major antibiotics.  If there was a bowel leak it fixed itself.  SO thankfully opening me backup was off the table.  Well then I went into renal failure due to the antibiotics!  Gheeze!  So now I have my gyn/onc, the other surgeon who helped, an infectious disease doctor and a renal doctor!  At one point I counted and between IV's, drains, etc I had 14 tubes coming out of various parts of my body! 

But we got it all under control and I came home from the hospital on New Years Eve.  It was a long bad haul and I am very lucky to be here typing this!  I think this was at least the second or third miracle I feel like I had been granted since all of this started.  

I have recovered from surgery nicely.  I lost over 30 pounds in the hospital and didn't have so much as a pair of sweat pants that I could wear when I got home!  Good excuse to buy a new wardrobe I guess.  I had gotten a little fluffy but a month long stay in the hospital with a stomach tube and no solid food was not the diet plan I had in mind!  

Switched from Doxil to Gemzar this January.  Then got sick a couple of weeks ago - this time after what happened that ultimately led to surgery I knew what was going on - I was pretty sure I had another bowel obstruction.   I was admitted to the ER on a Thursday and it was determined that I had a narrowing in part of my colon from scar tissue and or tumor growth.   We were pretty sure I was getting colostomy but the coloRectal specialist successfully got it cleared up and determined that I should be able to continue to function without surgery.  Five days later on the following Tuesday I was released.  This was the third or fourth miracle.  

Got out of the hospital on a Tuesday - left for vacation on Friday.  A week in the mountains fishing, hiking and doing a whole lot of nothing!  It was awesome!  But before we left the hospital my doctor discussed prognosis with me for the first time in 7 years.  Due to the progression of my diesease and the fact that I am so high risk for another bowel obstruction - he suggested we start making end of life plans and that my life span could be as short as 6 months to a year.  

I am on a pretty strict low fiber diet in an effort to reduce the possibility of another bowel obstruction.  Also I am supposed to take Miralax at least two times a day to help keep things moving.  I started on anew chemo drug today -  Topotecan and so far so good.  

I am amazingly upbeat - my husband on the other hand is understandably having a really hard time.  He asked me and I said

"I am happy today becasue I feel good today.  I am going to forge ahead with all my plans for the remainder of the year like everything is fine.  Who knows we may look up before long and find it is time to decorate for Christmas!"

It ain't over til it's over....

someone posted here once about the possibility of a colostomy as a way to prevent future bowel obstructions. I've thought about that a lot as many of us seem to have to struggle with this problem as time goes on. Is that something your onc has suggested? 

Sending love and support!

Susan

Still on Chemo but tolerating it well,, Carbo/Gemzar,my ca 125 is not where I would like it but it has been stable. June was my fourth year anniversary of being diagnosed but my family keeps me so busy it passed without notice. I do believe they are keeping me alive , I have five grandaughters from 19 to three weeks . Enjoy your summer everyone!

Colleen

Sometimes hard to believe..... Treating each day like a gift.  Just got back from a 9 week holiday to Canada and Europe.  A real trip of a lifetime.     i feel so lucky.   Sometimes now I find myself thinking about a future and not just living day to day but then that next appointment date appears on the calendar. Next one for me August 13th.  Do you know what I mean?  

So glad so many of you seem to be responding in positive ways to all the various treatment options.   Wishing you all the best.  Sincerely Susan

wendybill said:

Glad to see my Buffalo girls are still here

What a journey this OVC is.  Sad day for me today.  Donated five of my moms wigs today to a cancer center in Asheville.  Would have preferred to donate them in Buffalo but didn't have time to figure that out. I feel like I let my mom down today because I couldn't find her $500 wig among the bunch.  She barely had the chance to wear it.  She had sent it back to the store to be sized better and I picked it up for her while she was in the hospital before she died. I don't know where it went.  In my hopeful mind I hope she "came back" to get it.  All I have left in my trunk is her colostomy supplies.  Who knew one could be sentimental about those...but I am.  I'm hoping to donate them to someone that really needs them.  She almost made it four years and it was a giant fight but she somehow managed to work full time until the end.  That made her happy.  

Keep going friends .  My thoughts are with you.

 

I am so sorry to hear of your loss, your Mom went thru so much! That is a sweet thought to think she is wearing her new wig. She will always be with you, we alway want to be with our loved ones but I hope that when I leave this life my daughters will take comfort in the fact that my fight will be over. Sending hugs and love

One of the "Buffalo girls "

Colleen