Update On My Dad

Hello,

It's been a while since I have posted an update on my dad so I thought I'd share. He has had 4 chemo treatments (2 weeks on 1 week off) consisting of cisplatin and irinotecan. He was hospitalized for a week after his first treatment for dehydration due to nausea and diarrhea. The other 3 treatments were uneventful compared to that. He went for a CT scan this past Thursday to see if any progress was being made. Of course we were all anxious to find out daddy progress and very disappointed when the doctor said that she did not have a lot of information for us. Apparently the first scan had been misplaced and they were unable to locate it. Therefore, there was nothing to compare to Thursday's scan. However, she did say that there was nothing "new" on the scan, but the mass in the lung was still there. We already knew the esophageal tumor was still there because he still can't swallow. (He does feel that the chemo has helped some because things do go further down the esophagus but can't get all the way through.) We won't know if anything has shrunk until the 2 can be compared. By the way, we overnighted a copy of the first CT that we had at home and it arrived Friday. The thoriatic expert is supposed to review them Monday.

Sorry this is so choppy. I am scared, worried, and frustrated. My dad-both my parents, really-have been on edge since Thurs. I think we're all scared to find out and scared of the unknown at the same time.

Daddy had a pretty good weekend but around 6:00pm tonight he started feeling bad. He couldn't pin point anything in particular but just felt bad "all over." When I got home 2 hours later I found my husband very sick in the bed with nausea, fever and chills. His first symptom began by feeling bad all over. I am worried about both of them but I am SCARED TO DEATH that I have unknowingly taken this illness to my dad. Both of my parents are aware of my husband's illness and are being very observant. Instead of worrying about being sick my dad called my husband to tell him that he would have sent me home earlier if he'd known he was sick. How sweet is that?

I guess I'm just emotional. I spend every other weekend with my parents and I treasure every minute of it. Even if its cleaning up after he's been sick I consider it a privilege to be able to do that for him. But every time I leave I cry all the way home. Even when I go just for the day to take them to a dr. appt or something I still cry all the way home. Sometimes all I really want to do is to crawl up into his lap and for him to tell me that it is all going to be o.k. I guess no matter how old you are you never stop being your daddy's little girl.

Sorry...I guess I'm just venting a few of concerns and fears. Thanks for letting me do that.

Hi-Wondered how you were holding up-think of you daily. Glad your Dad did better after week 1 of chemo-it's a brutal treatment. The waiting is awful, but hopefully you will get the results you are hoping for. I'm still horrified by how many mistakes there are around films, etc. We lost an original set I took to Lahey for months when we needed them for comparison, before they turned up in the room where they are read. They kept insisting they had sent them back to hospital they were done at because they had a mail receipt for something sent there around the time they read our films. We are up for another CT and PET this week after the radiologist wet read his PET after a week saying it was clean, and finally did a real read three weeks later and says the lymphatics are lit up. I just don't understand how someone can wait three weeks to read an EC restage PET, and then not even bother calling the doctor. Very scary, but somehow "guinea pig class" allowed me to settle down enough not to be a crazyperson till we redo tests and get results this week.  So we are going on 3rd set of tests since early December, with the usual jitters that accompany the process happening again. Keep up the good work-even though it's devastating emotionally-you are being so strong for your parents and are a total blessing in their lives. Know we are here for you-just wish I could make it better for all of us.

Hi:  Glad to hear from you again.  This is Lynn (Robbie's Mom).  I often think about the people that I have read about and pray that somehow, someway, there will be a cure for this beast.  Just keep hanging in there and doing what you can - you will never regret it believe me.  It is very hard to watch your loved one so ill and to know that you cannot help them.  I heard someone say that it was like watching a serial killer attack your loved one and that there was nothing you could do.  The only thing we can do is to continue to pray, and to live each and every day to the fullest.  My son always told me - one day at a time, just one day at a time.  I must say that we never had films go missing but here in Canada unless something terrible (like a pulmonary embolism) shows up on the CT scan you don't get the results until your next visit with the oncologist do sometimes we had to wait for 3 weeks for news and after we heard I guess I wished it had been longer but the waiting is the worst.

Hope all goes well with your dad.  Will continue to pray and to check the boards for info.

Hugs

Lynn