From Far-Away Lindsey

Hello family;

The first news I heard of Uncle Chuck and his diagnosis with cancer was so horrible that it just struck me dumb. I had no idea how to respond at all. I've been getting updates from mom as the weeks went on, and then she let me know about this blog. So yesterday, I came on here and read through all the posts. This is such a wonderful way to share the story of his fight for life and I think it is such a beautiful thing that Aunt Kathy has created this space for dialogue about his struggle. It gives me so much hope, and cues me in to all the amazing work that Aunt Kathy and the family are doing, again, to support a member of the family so in need.

I feel very far away from you all, though this blog makes me feel much closer. If there is anything I can do, out here, will some one let me know? I talked with mom and Jason about coming up to Seattle as soon as I heard the news, but mom advised me to make a longer visit at the beginning of June. So I'll be there for about a week. Please let me know what I can do during that week in June to assist folks in the support system for Uncle Chuck. Also, let me know if there is anything I can do for those of you in Seattle who are putting all this love and energy into caring for him along the way.

So tomorrow is Easter. I think I'll be either at a morning Baptist mass (amazing music) or a Unitarian mass for Easter. I'll place all my Easter wishes in the hope that Uncle Chuck will begin to feel better and regain some liver function.

You are all in my thoughts every day. I have so much admiration and love for each and every one of you. Thank you to each of you for being so wonderful. Lots of love, lots of love, lots of love, and all the love and comfort and hope I can send to Uncle Chuck in spirit-

Lindsey

Took me awhile to get here - new blogger!
New report on Uncle Chuck. I took him to a dr. appt. on Thurs. Had his blood checked gave him a lot of different pills ( for nausea, acides etc. ) and got him back home. His liver count was down some - but that would be from the chemo. This is now Fri. nite. I checked on him after dinner. Chuck is pretty much in bed up to this point. The chemo has left him pretty low. I got his pills sorted out, and left one phone on the charger and one phone by his bed. He has zip appetite and not much stays down. Hopefully the nausea pills should help that. Also had him take one the pills that should help with the acides. The retained fluids really make him uncomfortabel. I will check on him again in the morning. Barb checked on him during the day since both Bev and I were at work today. he has another Dr. appt on Monday - probably will do more blood work. Other than that not much to report - except that he really feels crumby! It's hard to see him feeling so terrible!
Love, Kathy

More on U. Chuck

I came into the blog a new way - so hope this works.
I brought U. Chuck home today , got some food into him and when I went to check on him at dinner time he was in bed. The chemo was pretty hard on him! I take him to see Dr. Goodman tomorrow and I imagine he will check his blood etc. and hopefully give us some kind of report.
I also talked to one of our radiologists at work this am. He is known for his knowledge of the liver so have been waiting for him to read so I could get some info. from him. According to him, there may be some light at the end of all this. He told me that if the chemo killed the tumor, then there is enough liver left for it to repair. Without the tumor to feed the mets, they could shrink and ultimately his liver could heal, He said that when we do a scan in about two months, if the tumor has been destroyed, we should begin to see some healing of the mets. This sounds like really good news to me! What it also means is that we are in for a fairly long fight - as in months. So we need to keep up with the food train and anything else we can do to keep Chuck well and keep his body fighting. I guess that this is one of the differences of a neuroendocrine tumor. Because they are "primal" they are easier targets of the chemo. I brought home the ca booklet they gave us and will try and make copies for all of us of the food section. That may help us with trying to figure out what he should eat. Then we can keep a close eye on him - esp. now and less as he heals. I felt much more postive after talking with Dr. Schmiedl. He looked at Chucks scan and felt that there was a good chance that he could recouver from this tumor. It will just take time and all of us keeping his spirits up and health good.
So all that is my news for today. I hope everybody is managing to read this blog - I'm never sure if I should e- mail or blog!
Looking forward to seeing all on Sunday!
LOve, Kathy - AKA Mom

(from Mom-kathy)

"Just a note - Chuck started chemo this afternoon. We'll see how it goes and how he feels in a couple of days.

I guess this may change the menu planning somewhat - sounds like now he has to eat more food that has been cooked - along with milkshakes etc. Bev was there also - we can both keep you posted on food etc.

More tomorrow - Love, Mom, AKA Kathy"

In case someone missed the email- RG

Hi shelly. At this point it is really hard to say what Chuck may enjoy. I got him a chicken from Costco which tasted good to him ( he still has some of it. I went over tonite and sliced some off for him . Mostly he has been eating snack things ( raw vegetables etc) I know that shakes taste good to him and those could go in the freezer - after some thawing he could reblend them. Ham also comes to mind - know he likes that. He loved Bevs twice baked potatoes. I also know he doesn't care for vegetables that are cooked. Also things like pudding come to mind - or chicken with rice and broth also tasted good to him. - Bev made him some of that, and he enjoyed it. It's hard right now, because he doesn't feel very good , so he really doesn't eat very much. Bannanas taste good to him - maybe a fruit drink with some ice cream in it. I got him some hi proten powder so he could mix that in a fruit drink - like those Java drinks. he also likes nuts and those are good for him.
Hope this helps - sorry I didn;t get to you earlier!
Love, Kathy
Thought of a couple of other things. - scalloped potatoes he likes ( with Cheese ) and I know he does like cheese - got him some med. Cheddar and he enjoyed it with crackers.

from Shelley

Any chance we can get a list of Chuck's favorite meals? I'd like to contribute by making some small serving homemade meals we can put in his freezer that he can thaw and microwave or heat up in the oven. If I had a few of his favorites, I'll get started this weekend on some cooking. Any thoughts?

from Kathy

This is from kathy, I will also e-mail briefly, but this is the main stuff for today.
I took Chuck to the Dr. today. Before we went there we went to searad to have a catscan. Dr. Peters read it and the scan did show a tumor in the tail of the Pancreas. From there we went over to see Dr. Goodman. He is the Dr. Chuck is seeing at the Swedish Tumor Institute and will continue to be his Oncologist. He had seen the scan when we got there and already had the report. - so. On Tues. when we were there he did a blood draw. From the time he had blood drawn at Overlake ( 6 or 7 days ago) until he drew blood Tues. Chucks pancreas markers had gone from 3 to 500. ( Big Jump) . He believes the tumor is what is called a neuroendocrine tumor which is a primal type of tumor. he feels that this tumor may respond to a type of chemo and suggested that Chuck start with this , this following Monday. He will be in the hosp. for 3 days so he can be closely monitored. With Chuck being at such a low level at this point, he wants to be certain that the chemo doesn't knock him down too far, and then - hopefully - it will bring him to above where he is now. After two rounds of chemo ( 3 weeks apart) we will do another scan and see if results can be seen. He is hopeful that this may give the liver some time to repair. ( Plus bloodwork to check pancreatic levels. )
After that Chuck had 6 litres of fluid drawn off via US. This should make him feel much more comfortabel immdiately. The fluid was pushing on his diaphram and heart and he did feel better.
The concern is that Chuck is so low now, the chemo may be a bit much for his body to handle.
I believe that Chuck has opted to try the chemo - I'll know more on that tomorrow.
As for food. Geoff has made a great spread sheet. When you sign up for food - don't bring too much. He eats a very little bit and more often. He loved the fresh vegetables I brought him and fresh fruit. Also the nuts tasted good and he loved Aunt Bevs potatoes. Also shakes are good. Anything that is easy for him to fix. He loves his new chair and with the table set up next to it he can put out some fruit, or anything that tastes good to him and nibble at it.
So that is today - perhaps some lite at the end of the tunnel?
Hpe this gets to ;you all. I have never blogged before - had to have Geoff lead me thru this signing up thing and bookmarking this particular blog.
Love, Mom, AKA Kathy