Update on my Dad

[Sheri]

This is long...

In my profile, I had the date of Dad's onc visit, normally I have to remind him of his appts. However he made it to his appointment and I thought it was next week for some reason and missed it .

We sat at the ballpark together yesterday watching my daughter's game. For the lack of recollection, I didn't mention his appt and neither did he.

The last time he had a scan review with the onc (which was NED), I asked the Onc why he was doing a six month x-ray follow up in lieu of a Cat Scan every 3 months. From what I've read SCLC normally doesn't relapse in the lungs, it goes to other organs and scans every three months is normal protocal for small cell patients in remission. The onc was a bit miffed I questioned his practices.

The onc told me, it doesn't matter when we catch a relapse. If he relapses, there's nothing we can do beyond palliative treatment.

Dad did get a Cat Scan on April 4th.

I can see where Dad conveniently failed to mention on the bleachers yesterday, he had an onc appt today. Plus the man thinks he's immortal, doesn't need my wisdom or lack there of.

Our greatest form of communication is through instant messaging. We've been doing it for almost ten years and rarely call each other unless we can't find the other person online. I'm going to copy the conversation I had with my Dad today at work. I'm not sure how I should react. Is it good news?

Dad:

Yep just got back from the Dr

Dad:

Went to see the onc today, Nurse Heidi was standing in

for him. She asked me when I completed my treatment,

I told her 3/31/05. She said that’s great you've

beaten the odds. Now that made me feel good. In 3

months, I go back with a brain scan and a chest scan in

my hand.

Dad:

The odds being lasting a year with small cell.

Me:

I'm sorry! I thought your appointment was next week! Why didn't you remind me?

Me:

So the onc wasn't there today? Your scan was clean? Did you mention anything about the high blood sugar?

Dad:

You already had one day off for this didn't think you

would want to take another. Never mentioned blood

sugar to them that’s the GP’s bailey wick. They did see

a spot on my adrenal gland but were sure it was

benign. It was there before in other scans and had

not grown any. That’s why the three month return want

to make sure it is not growing.

Me:

Oh, that adrenal thing worries me.

Dad:

She said that that was one

of the places Lung cancer migrates to, but the people who read the x-rays weren't concerned about it.

Me:

I wonder if that "spot" was in your original scan before chemo?

Dad:

I think that it was there at the first scan and while going back over them they have not changed size.

We'll just have to wait and see and see if we get any changes.

Me:

If it first appeared on the scan after chemo and then on this one, I would be worried

Dad:

The guy who reads the x-rays spoke lightly of it and

may have mentioned that it was seen before and has not

progressed. But the nurse wants another in three months to be sure. I’m not worrying and you shouldn't either. After all the reading and checking was done

she made the "beat the odds" comment. There would have been no reason for that if there was some doubt.

Me:

I wish I was there to ask the tough questions.

Dad:

I wish you would have been too. That’s probably why The onc wasn't at work today, he figured you were

coming in!!!

Me:

Did you look at the scan and see the spot? How big is the spot?

Me:

And your onc is a big wuss!

Dad:

They don't send the scans to the cancer center they have an expert at the hospitals check them out then they send over a typed report.

Dad:

Saying what they saw.

Me:

Did you get a copy of the report?

Dad:

No

Me:

Why not?

Dad:

No need she explained it all to me.

I have releases to get information on his medical care. I don't know what to do. He thinks he's fine and we should watch and see. I have the copies of his other reports and I haven't seen the adrenal mentioned. SCLC does have a propensity to metastisize there. He thinks I blow everything out of proportion so I don't want to second guess him however, I want to do everything I can to keep him alive. Any suggestions would be greatly appreciated. You guys are the greatest.

[kamataca]

Sheri,

That's a tough one, all right! I am a big advocate for asking all of the right questions, but I have had to learn in this process that my mom is the patient, and not me. It kills me, b/c I want to be at every app't and ask all of the hard questions, and the follow-up questions to those, but I can't always be.

I've also learned to follow my mom's lead with what she wants done, and what she wants to wait on. She was recently told that they found another small tumor, but she doesn't want to deal with it until after her Memorial Day vacation. It bugs me (I wasn't there at that app't...she doesn't like me missing work all the time either), because I want more info, but I have to respect that these things are her decision. It doesn't make it any easier though!

I'm not telling you what to do, just what works for me (mostly ) If you ask your dad, and he doesn't mind you checking in to his results, then do it for your peace of mind. I wish answers were easier for the both of us!

Kelly

[cindy0519]

Yet another post that I could have written. Dad and I go back and forth like this as well. It has come to the point that we sort of have a mutal understanding...I respect his right (and need) as the patient to decided what he wants to do. And he respect my need to know all that I can. We have talked a lot about his wishes and how I support whatever it is that he truly desire but to cope with this I REALLY need to know the whole story..not bits and pieces. So he now automatically has the dr's fax me a copy of his scans. Then I look at them (it doens't hurt that I have a brother in law that is in internal medicine) and Dad and I discuss them. I make my "suggestions" and then he decides what is best for him to discuss futher with Dr's or what he wants me to address with them (I get the hard questions..lol). Thank God thus far we have been on the same page 99.9% of the time!

If it were me, I would ask your Dad if he minds if you request the written report of the scan... just to satisfy your mind and for your records of course .

It is a hard thing to balance. I find myself often trying to decide when to "push" and when to just accept his need to wait and see -even though it kills me to wait and see. Ultimately, I just think it depends on your relationship.

Best of luck to you! I hope you find out what is really going on soon!

Cindy

[cindi o'h]

Hi Sheri.

This is tough. I went through the conversation several times.

Your Dad is a cool guy, I must say. I hope that his blood sugar gets straightened out okay and soon, hey. He is right about the GP thing as a good place to start.

Your Dad sounds like an intelligent guy who has his ducks in a row.

I know that you two are a team. It is miserable not feeling like you're in control. The biggest statement that your Dad made was, "I'm not worried, and you shouldn't be either." or something to that effect. He was content with how the appointment went.

If you were to get in there and start pulling his reports without an invitation from him, that might cause a riff in your good relationship. I would be very cautious about this, Sheri.

Funny, how we change positons of the parent/child to child/parent..when does that happen?????

Try to settle down there, and see if you can practice your "acceptance" skills. Let go the fears.

with respect,

Cindi o'h

[hollyanne]

Hi -

I too read and re-read the IMs. You know your dad - we don't. If he is in control of his appointments (i.e. does ask a lot of questions, has a grip on everything, etc.) then I would let it go. If the oncologist thought treatment was necessary, you would have heard about it. I know how hard it is to feel like you don't know every little thing, but it is your dad's life. The one thing I would consider doing is ask him to get a copy of the report...

Hnag in there -- sounds like good news!

Holly

[Sheri]

Thanks all for your responses. I will certainly follow my Dad's lead. It looks like we'll be watching and waiting for 3 months. In the meantime, we'll be on the field. Play ball!