Tyler's Heart

Pictures - Pictures from Houston.
LVAD Video - A YouTube video about living with an LVAD.
HeartMate II Video Clip - Short video clip about the pump Tyler has.

Another good blog to read is from our friend Bill. Cozumel Part 1 - This Might Be Habit Forming.

Thursday, July 14, 2011

And then Cancer

Yep, I said it.  Cancer.
Tyler went for his appendix surgical follow-up on June 22nd.   The hospital had done a pathology on his appendix and found cancer.   It is an Appendix cancer and is very rare.  Found in about 1 percent of removed appendix.   The cancer was found all along the length of the appendix and may have been the cause of the appendicitis.  It is an Adenocarcinoma with Goblet cells.

Tyler called me while I was at a business lunch and said there was no easy way to tell me this, but "I have cancer".   Then he laughed a little.   Of course I said ... "Not funny."   He said what else could he do at this point but laugh.  The surgeon told him the treatment would be removal of the portion of his colon that had the cancer.

I didn't write about this in the blog sooner because we really didn't know what was about to happen.  What kind of cancer?  Had it spread?  What was the treatment?   How much of the colon would be removed?   Colostomy bag?  Why do we get to have all the fun!?

Tyler then started doing tests; Colonoscopy, some PET scan like thing, urine tests, blood tests, etc.   The colonoscopy came back normal, the scan came back normal, the other tests came back normal.  So a doctor called Tyler and let him know the good news was that they would just remove half his colon.  Tyler's response:  "Doesn't sound like good news to me!"

So we spent about three weeks saying "What?".   And we also spent three weeks going to dark places in our minds.   Does he really still have cancer?   Is it treatable?  Will he have yet another "bag" to carry around?   Do we prepare for the worst?

We decided this was enough of a "push" to get our paperwork in order.  Living wills, Advance directives, power of attorney's, Last Will and Testament.   Oh the fun of it all.  His parents unfortunately went on "alert" again.   Again, we decided to spread the word only so much since we didn't really understand what was about to happen.

On July 13, we went to see a surgical oncologist.  Please, oh please, explain this.   The doctor first came in and said when he first saw Tyler's case it was a "no-brainer".   Observation only.   Then he took it upon himself to contact Tyler's other doctors at the hospital to further discuss his case.  At that point he changed his mind.   Even though Tyler has an LVAD, his other doctors said he was very strong and should be able to handle surgery..... again.   So the doctor now was advising going ahead with the surgery.

The surgery would be a right hemicolectomy.  It would remove about 1/3 to 1/4 of his right colon.  If everything goes well there would be about 5 to 7 days in the hospital, no colostomy bag, and about two to four months recovery.  This is a preventative measure.   So at first, we thought  "forget it.... observation only."  The problem is that by the time a scan or other tests indicated the cancer had spread it would almost be to late to handle the problem.   We made another appointment with the doctor in about three weeks while we way the options.

The other issue is that with a cancer diagnosis, more than likely Tyler wouldn't be allowed on the heart transplant list.  Tyler and his cardiologist had already discussed waiting a while to see where technology went with heart pumps, so this wasn't as dire as the doctor thought it would be.  

At first Tyler thought he would just go the observation route.  But then after a little while he thought that would just delay the inevitable possibly and any pain he had he would think it was cancer.

So while a final decision hasn't been made yet, I believe we are leaning towards surgery.  Even though they want to treat it as an aggressive form of cancer, it appears we have a little time to think this through and schedule surgery.   Possibly beginning of September.

We are exhausted physically and mentally.   The doctor wants Tyler to fully recover from the appendix surgery (hence the three weeks before the next appointment).   One doctor commented that his colon was "pristine" and one of the blood tumor markers was elevated but not by much.  So it looks like we have a chance to catch our breath before the next surgery.

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