Topic: In remission?

My user name is LTSO - that stands for "long term significant other" - that was how I was described in the report on my (now) husband's surgery.  He was diagnosed with CC in October 2006 after ten-day hospilitazation for jaundice.  An extra-hepatic tumor had blocked his bile duct below his liver.

In early November, his gallbladder was removed (the duct was cancerous), lymph nodes were clear.  They could not resect the tumor on the liver bile duct - too much involvement with the liver blood vessels.  Actually, they nicked or tore the portal vein and he needed 5 units of blood during the surgery.  Oficially, he had a heart attack (that would be his sixth) and went through all kinds of nightmares with the Drs trying to treat him as a cardiac patient instead of an oncology patient.  He came home 10 days after surgery.

We started radiation (5 days a week) in conjuction with Xeloda in December.  After two weeks , the Sunday before Christmas Eve, he started to run a 103 degree fever.  We live about 45 minutes to an hour from the cancer center, so we went to local emergency room.  The Dr there thought the fever was due to viral infection and sent us home (after 12 hours).  When we went for his radiation treatment, they admitted him and he spent the week before Christmas in hospital - he had an abcess in his liver, probably a side-effect of surgery.  A subcuntaneous drain was put in, along with a Pict line, and he came home.  We administered intravenous antibiotics for 2 months.  The drain was finally removed in May this year.

He was started on Gemzar (gemcitibine) in March.  The plan was 3 weeks on, one week off for 3 momths.  His white cell count dropped so precipetously after the first treatment that the treatment was changed to every other week.  He received 9 treatments.  They ended in the middle of July.

He experienced a lot of nausea during the treatment, along with fatigue and delays due to low platelet counts (in addition to the white blood cell drop at the beginning).  For nausea, they prescribed Xofram at first, but the effectiveness seemed to wane.  The medical oncologist recommended Marinol, which helped a lot.  We have a friend who is a breast cancer survivor, and she gave us some marijuana, which helped even more.  This man went through the seventies without using any drug (he was a Tennessee Bureau of Investigation agent, then an army officer), but he now believes that there is justification for medical marijuana use.

His last check up in late August showed no signs of tumor on CAT scan, and good levels of CA-19 blood markers.  We go in for another blood test next week.  He is struggling with depression, and is taking Zoloft, which has helped, but I am pretty sure he needs a higher dose or a different med (or combination).   That is my project next week. 

He has also been experiencing short-term memory loss (chemo-brain?) at a bothersome level.

We are getting our house ready to sell, so that we can move closer to his two grown sons (33 and 29).

We have a 6 year old son who is trying to make sense of all this.  He was a blessing when he was born (I was 42, his dad was 48), and has been one since, but it tears me up to see him deal with this.  We have told him that daddy will die from his illness, but it will be a long time before he dies, understanding that, to a 6 year old, a week is a long time.  I have told the rest of my family and my friends that this will probably be what he dies from, and probably much sooner than any of us would like.  He and I were married last Saturday.

I know this is a very long entry, but it is the first time that I have summarized my experiences with this illness over the past year.  October 3rd will be the anniversary of his diagnosis, and I guess that already puts us in the upper median on survival.  He has responded as well as can be hoped for to his treatments, and right now we are figuring out how to deal with the aftermath, and how to respond to the seemingly inevitable recurrance.

We are fortunate that his health insurance has been excellent (he is retired military).  Also, my field of expertise is such that I can telecommute and work part-time and still bring in a reasonable salary.  But my past focus on my career seems quaint, somehow.

I have always been more comfortable as the one who has answers, and figures out her problems for herself.  I am coming to the realization that this is not something that I will do well on my own.  I want to share what I have learned, and learn from others' experiences..................

Re: In remission?

Best wishes to you and your family and I hope the remission stays for a long long time.  Good thing you have your husband on some anti-depressants, even if they need to be tweaked - you should probably have some, too, as it is SO difficult to go through this terrible waiting game and anticipatory grief without feeling depression.

Good luck, much hugs,


Re: In remission?

Hi LTSO- The thing I notice most on this site is how similar all our struggles are.  I don't talk about it to anyone else, but I am often consumed by the fact that Dave probably will not be here for my retirement.  He is 64 and 10 years older than me.   All I want to do is quit work and be with him but all we have is my income since he no longer works and most of his disability payment goes to pay medical bills.  I wish I could find a way to stop thinking about next year or five years from now and just live each day.  Even though I tell people that is what I am doing, it really isn't.  Sending you all the best and hoping you and your husband keep up the fight and that he will be around for a long time for your little boy and you.   Patrice