Dad's in Shanghai - Update

MayaK
  • By MayaK · September 12, 2012 at 9:32 pm · 12 replies
  • In Small cell lung cancer - Extensive
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Well, dad's been in Shanghai for almost two weeks now. When he got off the plane, my heart sank. The last time I saw him he was full of energy, happy and upbeat, determined to kick the cancer's butt. The man that now stood before me seemed scared, depressed and more than a little angry at the world. I could not recognize him and could not believe the change in him after only one month. Granted, it was a rough month. First we got the news that 3 rounds of chemo, which we all thought was working well, had only shrunk the cancer by about 25%. He was given a different chemo cocktail, CAV, which did not agree with him and from which he is still recovering. His coughing was getting worse and his energy levels were low. By day 3, his cough was really starting to worry me, and he was battling serious fatigue. We scheduled an appointment at a Western cancer clinic (American doctors). They ran another CT scan and found that there has been growth in the last month (while he was on CAV! I read all the posts on this website and this chemo doesn't seem to work for anyone!). They immediately started him on 10 chest radiation sessions (to shrink the tumor in the lymph nodes) and today he is starting oral etoposide. In addition, the clinic here does an experimental treatment with thyroid hormone. Apparently, if they slow down thyroid hormone production they may slow down the proliferation of cancer cells, making them more malleable to chemo and radiation. The doctor said that it may or may not work, but side effects are practically non-existent and we are getting desperate to get things under control again.
Meanwhile, the doctors are absolutely amazed at how good my dad looks and feels, which is weird because I think that he is a shadow of the man he was a month and a half ago. I don't know who or what they were expecting based on his scans, but they are encouraged by his general performance status, which is why they are choosing to continue to be aggressive.
Dad has not lost weight and has maintained a solid appetite. He sleeps well. The cough was terrible last week but is much better this week. He will have a fit about once a day where his coughing is absolutely terrible to listen to, and this will last about 5-10 minutes. It comes and goes suddenly, but other than that he does not cough at all. This is a huge improvement from last week, so I hope that the radiation is working (he's had 4 treatments so far, today is his 5th). He also goes to a Traditional Chinese Medicine clinic for acupuncture.
Right now, his number one complaint is the fatigue. He gets so frustrated that simple daily activities tire him out. We still go for walks, he goes to all his appointments on his own and we even get some sightseeing in on the weekends. However, after a couple of hours of activity he's ready to lie on the couch and watch TV or nap. I keep trying explain to him that his body needs rest - especially now that he will be getting concurrent radiation and chemo, but he is still frustrated.
I don't know what else to do for him. This is so hard. I am now his primary caregiver and it's hard and I feel so alone in a strange country.
I'm soooooo scared and soooooo tired... But we're still in this fight and I'm not giving up.

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12 replies   

bluegrassblue

Hope the radiation and chemo will get good results. I know this is a big responsibility for you to have to take on. It sounds like you are doing everything you possibly can. Remember to take care of yourself while taking care of your Dad.

Meli80

Oh dear, I can so understand how you feel... am more or less in the same situation. Have no proper advise though, I am just trying not to go completely nuts from worrying and to find here and there little escapes for my soul like 1-2h of sports or coffee with friends... I know how hard it is and I can not even imagine how it must be for you in a new city and country... Stay strong and think about yourself too, you have a whole life still in front of you.

The fatigue is from the chemo for sure. I hope your dad gets better soon. Good luck with everything!

Marina155

Wow, you are such a brave girl and your dad must be so proud of you, I hope all goes well with treatment, chemo is making dad tired for sure, my hubby is so tired he has cap naps here and there especially a few days after treatment.

Best of luck take care of you as well'.

God bless Marina xxx

ThereForMyFamily

You are doinga wonderful job, and I am sure your dad appreciates it! You should be very proud of yourself. All the very best to you and your dad! I do hope his cough improves soon. It can be really unnerving, can't it? ..especially when you can't do anything to ease it.

LovingWife2

My heart goes out to you...I am finding this terribly difficult at times, and have a great structure of local family and friends. I can't fathom doing this from a new foreign country. I hope your dad finds peace with the illness, and the fatigue soon. Sometimes Ron or I still get frustrated, and we have a deal that we gently say to each other..this is the new normal...take a moment to readjust to it... And it seems to usually help.

Blondie103 (Inactive)
  • By Blondie103 (Inactive)
  • Reply 3372675
  • September 13, 2012 at 4:50 pm
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So glad your father managed that long flight.I am sure he is getting and has been getting the best treatment in the world.
He is so lucky to have you as his daughter.Good luck to you both,I know what it feels like to be in a country where English isnt the first language

MaryInLA

Thanks for the update. You keep hanging in there! Your dad is very lucky to have you. I'm sure he appreciates it.
The fatigue is hard to adjust to.
I hope the treatments work...
Take care
Mary

easterbaby

It sounds like you are doing the best for him. There is so much info to absorb and the decision-making is overwhelming. If you are seeing improvement (such as his cough) then that is a good sign.

avonmomcanada

Thanks for updating Maya. I am glad made is safely through the trip. I am sure with your loving care you can help strengthen him.

The fatigue really is tough on them. I know my hubby has bouts on and off with it. Right down to yesterday, he could not get out of bed all day, no energy. But he is feeling a bit better this morning.

I really hope that the new treatments show some improvements. For now, enjoy dad at your side. Terrible reason for him to visit, but he is by your side. Enjoy your time. If he doesn't have energy to do anything, just cuddle on the couch and watch a movie. I am sure he is enjoying being with you again.

All my best to your family. You are a very brave and loyal daughter. I am sure you make your dad proud.

oncocidia

What was the reason to go to Shanghai for treatment?

MayaK

Thanks so much you guys, for your support and encouragement. You are all so kind; your words mean a lot to me, and I really do mean that.

Dad was actually doing much better yesterday and especially today. He started oral etoposide yesterday and he's tolerating it really well. Radiation is going ok too. He had much more energy today and we were able to go out and have a nice dinner together, and this was AFTER he spent about 5 hours all over Shanghai, bouncing around from treatment to treatment. I call him my Phoenix, rising from the ashes...

@oncocidia - I moved to Shanghai a month and a half ago for work, and my dad came to continue his treatment here. I didn't like or trust his doctors back home, and neither did he. I wanted him to also receive some Traditional Chinese Medicine, plus he has access to some of the world's finest Western doctors here. If I didn't have to be here we probably wouldn't have pursued further treatment in China, but it so happened that I already was here and... who knows, maybe it's all happening for a reason.

I'm feeling much more optimistic today, seeing how he's doing better... Gosh, I've got to get off this roller coaster. It's making me queasy!

babytyson

Dear May,

First of all, you're wonderful. The weight is the first thing the doctor checks because in most cases, even if a cancer person is eating well, the weight doesn't
stay on. SO>>>GREAT!

I never went to China, but if its dusty, put a mask on
both of you because it could help the coughing.
Because he seems like a strong, independent man, that's why I'm telling you to wear one too. This way, he won't FEEL sick. If he's coughing when lying down, I read to turn the patient on his/her side. Or keep his
head up more than the rest of his body.

If he gets angry, that's normal too. Who the heck wouldn't be with this crummy illness. It's better for him to get it out. When he goes into the hospital for
testing, why not ask for a social worker to talk to him
and/or for you. Don't take things he says personally
although I know how hard it is to hear and understand.

Right now you're both enjoying each day together.
Take pics of each other in one of those chinese hats.
Make him laugh....

Whenever I always travel on an airplane, I always wear a mask. My kids tell me I should move to
Japan.....silly silly...

May, you're doing everything possible for your Dad.
G-D Bless you and your Dad.

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