Newbie- caregiver

pam.pinkham

Hi My name is Pam. My dad was diagnosed on June 29th , 2010 of having esophageal cancer. Went through all the test, EUS, Endoscope, cat scan, then PET scan then we find out it is in his stomach. Dr's told us it probably started in his stomach. By the time they discovered it he was stage III . From that point he started chemo and radiation treatments for 6 week's. That was a really rough road . We live an hour away from where his drs and the cancer center is . I had to drive him there 5 days a week for 6 week's .... during that time he didn't really get sick from the chemo but lost even more weight, started bleeding and dehydrated, he was hospitalized twice just after his treatments for being severely dehydrated and blood transfusions. First time was only 2 units, second time was 5 units and this last hospital stay he got 5 units of blood and tons of fluids. Dr put in a PEG tube back in June. so he has been only being able to take liquids through his mouth. he is on morphine sulfate and also diurgesic patch for the pain. during the first PET scan drs told us the tumor take's up 1/2 to 2/3rds of his esophagus. Now that all the treatments are done we had a CTscan and PET scan and get results on wed of this week.we do know from the last hospital stay and they did the ct scan that the tumor is still very large. drs want to remove his stomach and esophagus and reroute his colon. He said it was a very brutal surgery and tough to recover from so he has to be up to par to be able to have it and the last pet scan has to show that it hasnt spread anywhere else. his stage was T3N1M0 when we started. in the last 2 week's he has been in sooooommmmme severe pain even with the pain meds... the other day we called EMS to take him to the hospital because we weren't sure waht was going on as it turns out he was in just that much pain.... god it broke my heart to listen to my dad groaning in pain...
He also has a birth defect in his heart where the main artery is not shaped like this ( Y ) it is shaped more like this ( H ) minus the bottom half... drs told us back in Jan that any kind of physical exertion ccould trigger a massive heart attack. so the other night when he was holding his chest in so much pain we didnt know if maybe it was his heart as just 2 days prior to that his legs and feet were swollen sooooooo badly . Once he laid down though the swelling went away.

My mother's health is bad also . they adopted 2 of their grandson's 5 yrs ago. they are 10 and 5 so needless to say I have completely taken over the house as far as cleaning, cooking, shopping, taking mom and dad to the drs ,taking care of the boys, I live next door to them so that make's it a little easier. My mother in law live's with me and my husband as she just in a yr time had to have 2 of her toes amputated because of diabetes. so i am taking care of my house also..... I will be honest there have been time's i have wanted to just scream.... and say okay enough is enough but God has placed me here in this situation and I know he will see me through it. that is what keep's me motivated and the fact that I love my parent's more than anything in the world ....

any input I can get would be greatly appreciated. I don't know what road we will have to take from here I jsut pray that it will be will less pain for my dad.

Tina Blondek

Welcome Back
Hello Pam and welcome to our family on this discussion board. I was a caregiver for my dad. He too was dx with EC with the tumor being very close to his stomach. Chronic acid reflux most likely being the cause. My dad was at stage IV when finally dx. He was not a candidate for surgery. Your dad is lucky that he can have surgery. Yes, it is a huge surgery and recovery, but he will be able to do it, and the cancer will be gone! My dad had 6 wks of chemo and radiation and went into remission for one year. In December 2009, the cancer went to his liver. My dad suffered tremendously with this for 2.5 months and passed away in March 2010. Once your dad has gained back his weight, and strength I would suggest he have the surgery done. You do have way too much on your plate. Please ask for help from friends or family members. You are only one person. Do give yourself some "me" time. You are not alone here. We are always here for you. Any day or time. You can also find comfort on the caregivers discussion board. We will be thinking and praying for both of you. Keep in touch.
Tina in Va

pam.pinkham

Tina Blondek said:

Welcome Back
Hello Pam and welcome to our family on this discussion board. I was a caregiver for my dad. He too was dx with EC with the tumor being very close to his stomach. Chronic acid reflux most likely being the cause. My dad was at stage IV when finally dx. He was not a candidate for surgery. Your dad is lucky that he can have surgery. Yes, it is a huge surgery and recovery, but he will be able to do it, and the cancer will be gone! My dad had 6 wks of chemo and radiation and went into remission for one year. In December 2009, the cancer went to his liver. My dad suffered tremendously with this for 2.5 months and passed away in March 2010. Once your dad has gained back his weight, and strength I would suggest he have the surgery done. You do have way too much on your plate. Please ask for help from friends or family members. You are only one person. Do give yourself some "me" time. You are not alone here. We are always here for you. Any day or time. You can also find comfort on the caregivers discussion board. We will be thinking and praying for both of you. Keep in touch.
Tina in Va

Thank you
Thank you Tina for the input... I am trying so very hard to be optimistic. Tom. we will find out if the treatments done any good he will probably have to have a transfusion done also as his blood pressure is dropping again and that usually means he is bleeding. so tom he will have blood work done to check for that... he has had trouble all through out this with the tumor bleeding. As for his weight we are forcing him to eat. we make sure he gets his tube feeding minimum of 4 times a day . I wish there were more they could do for his pain though.. I hate seeing him suffer tom i am going to discuss this with his drs when I take him there. only thing that eased it the other day was IV morphine. even the liquid morphine he takes at home didnt help. maybe even a shot or something he can give himself at home. I don't know but htere has to be something they can do..
Pam in SC

pam.pinkham

UPDATE!
Hi everyone ! Just wanted to update on how our appointment went this morning. Well the chemo/radiation shrunk the tumor to a very small size. which was good. but he is still having bleeding issue's so dr not certain at this point it is coming from the tumor. Found a lesion on his lung and said it was too small to tell if it was cancer or not.
so the game plan now is he will go into surgery on Nov. 23rd first they are going to do a scope on his stomach before they cut on him. to look at it and see if there is something else there causing the bleeding like may be a ulcer and so forth. If there is an ulcer they will post pone the surgery until they can clear that up. if no ulcer they will proceed to do the resection on his esophagus. they are taking his esophagus and part of his stomach. surgery will be about 7 hours. he will be in the hospital no less than a week. maybe longer depending on how he does. while they are in there they are going to try to look at the lesion in his lung. to see if it is cancer or not. he is going to have tubes coming out through his nose, abdomen, side, back and a catheter. wow that's alot of tubes. so please pray things go well and hoping he can at least heal up enough to have a fairly decent christmas since he will be in hospital for thanksgiving.
thank you all for the words of encouragement and the info. and the good tips. will update again soon.
Pam