New here and Baby Sister has EC

Hi Tina,
My name is Cindy
Hi Tina,

My name is Cindy and my 78 year old father was diagnosed with Esophageal cancer at the Gastric Junction T3N1MO in December of 2009 - he lives in Lousiana and I live in Delaware. I fully understand your feelings about not being sure what to do but wanting to help. This is a lengthy message my apologies in advance.

For me it has been difficult to be so far away and not there to help. But I did a couple of things and you may be able to do some of these for your sister. The first thing I did was research and find out as much as I could, I looked at what the difference between a regional hospital and cancer center was. I learned that there are only a handful of hospitals which are recognized as "specialists in the treatment of esophageal cancer". Given the nature of this disease getting the best treatment you can and a second opinion can make the difference. So after I did my research and found the centers in the south and east - Sloan Kettering (New York), John Hopkins (Baltimore), Fox Chase (Philly), Pitt (pittsburg), Mayo Clinic (Minn.) MD Anderson (Houston) I spoke to my father about getting in to see someone for a second opinion. At first he was resistent and didn't want to upset his doctors, but finally I was able to get him into Sloan and flew him and my mom to Delaware for a multi day visit with those doctors.

While there with him I helped him with all the forms, insurance issues and asking questions because he was in a daze and my mother is very shy and isn't comfortable dealing with authority figures. At the end of the evaluations and visits my father said he wished he could stay to get his treatment in NY but that he knew my mother wanted to go home, his compromise is that any surgery will be done at Sloan and that the oncologist from Sloan would direct and coordinate his treatment with the doctors in Louisiana. The real miracle in getting the second opinion is that my father became engaged in his treatment and wasn't willing to just do what he was told without asking why or how will that work how will I fee. At 78 he finally found a voice saying that he was interested in his quality of life and enjoying his next 20 years so he wasn't ready to be written off because he was old and already had a long life. It was a gratifying experience.

I am now helping with all the paperwork, letters, insurance issues and follow up on reseach for my dad checking into his treatment and discussing issues with his doctors. I am also keeping a set of files for him on his treatment and appointments because he wanted to have someone organize this for him because he said sometimes he gets so overwhelmed with all the details and worries. I have applied for FMLA and will be going to spend time with him if necessary during his chemo and radiation and he will come here if they decide to do surgery. He calls me almost every day now and I always take the time to listen to him and talk to him --- even if I am busy. And I thank God for giving me the time to talk to him right now, because I do know the day will come when I won't be able to talk to him and I thank God he has been with us so long. I am thankful that I can help - so support your sister in any way possible.

As far as his treatment so far they inserted a port for the chemo and a stent so he could swallow. He is able to eat more right now but still has to be careful and eat small meals many times a day, chew very well and not drink during the meal. He can only drink before or after eating. And he is supposed to have 100 grams of protein a day which is a challenge -- and watch his sugar which is stressed by the steriods administered before and after the chemo.

Right now he is undergoing a chemo course of Carboplatin and Taxol (2 cycles, once a week for 3 weeks, one week off and is now starting his second cycle) at the end of the 2nd cycle they will do a Pet Scan and see how things are going. They did not think he was strong enough to withstand a chemo course with 3 agents. Then the plan is some more chemo and adding 25 to 35 days of targeted radiation. Then another pet scan and a determination if he is strong enough for surgery and if surgery is needed. My dad has high blood pressure, and well controlled diabeties but those are considered serious complicating conditions as well as his age. I think they are taking a more conservative approach with him than they would someone your sisters age. Right now he is tolerating the chemo fairly well, he has had mild nausea and is tired and taking 2 naps a day --- a huge contrast for him because he was out of the house by 9 usually and out most of the day running errands and doing things and volunteering.

One other thing we are going to do for my dad - he is into geneology and has rooms full of books, and records etc. etc. and I know that is a legacy he wants to leave. A group of us are going to go and help him index, scan and categorize all the information. We are going to get a computer program, bring some lap tops, and a video camera so we can do some interviews about his research and his passion for our families history. I don't think if we hadn't had the cancer diagnosis that I would have gotten off my butt to organize and do this. Oh, I know that it was something we talked about that we knew we should do but there was always something else to do that we never made time for it. So something good comes from this and my father says -- "you kids get tested, tell everyone you know not to ignore heartburn, spread the word" -- so that is another thing that you can do in honor of your sister.

I tell you this to start you thinking if there is something that is important to your sister that you could help her accomplish, or something the two of you said you would do someday, or someday when you were old. Do not wait - do it now. Don't wait. Cherish your time with her and be her soft place to fall even if you are far away because you are close in spirit.

Good luck and she is lucky to have someone like you in her corner.

Cindy

K_ann1015 said:

thank you Cindy--
Cindy,
thank you for your note to Tina,
I too am a daughter with my dad having EC--living far apart. It was nice to see your note--because I have done very similar things for my parents and it is nice to see others that have gone through it and all the emotions/stress & "gift" of being able to be there and help when possible. But it is still hard to live 9 hours away... your wrods to Tina in the last paragraph were quite wise.

I'll keep you & your dad in my prayers as well as Tina (all of them!) and the other csn families. Hang in there and your dad is lucky to have you as well!
Kim

Thank you Kim - that is one
Thank you Kim - that is one of the amazing things about this site - we are not alone and the people here are really there to support you and offer words of encouragement.