Thanks galore!

Hi, all! Linda here:
Now that things have calmed down from the weekend, I certainly feel that I need to add my two cents worth to Jim's last entry. Thank you, thank you, thank you to all of you who helped to plan my wonderful surprise party, especially Andrea, Jim and Tony. I can't believe how much work Andrea did to put that all together...and from Wilmington! Thanks to all those who helped with deck furniture, drinks and overall organization. As I tell you often, you are the best!
I was overwhelmed by the number of people here and by all those who came from out of town. Thank you all so much for making my day a true surprise in so many ways. God was certainly shining down on me that day with family and good friends surrounding me on a beautiful day in May. It reminded me once more how truly blessed I am.
Just a little health update: since the party I've felt pretty well, except that about every other day I get "cancer fevers" even though I am on a constant regimen of Tylenol. We don't know why these come up now and then, but at least they do subside after a while. Tomorrow I go for another Toricel treatment, but I'm also getting 2 units of blood because my hemoglobin level is really low. Should be a fun 6 hours in the hospital!
Good-bye for now. Love you all!
Linda

Surprise!

There's so much to talk about when you don't post for a week.... First and foremost, there was a surprise birthday party for Linda on Saturday. Even though Linda said she didn't want to make a big deal of her birthday this year, Andrea decided her Mom was having a party. Andrea handled nearly everything, sending out the invitations, hiring the caterer, etc. Plus a big thanks to our next door neighbors, the Engers -- you'll see why in a minute. I also want to apologize to anyone who didn't get invited, or didn't get their invitation. Andrea tried very hard to scour Linda's address list in her email folder and checked with various friends, school teachers and neighbors for others. All told, she sent out over 150 "Evites" and there were almost 50 who didn't RSVP; we knew we must have had some bad addresses, but with that many invitations it was difficult to follow up. Nevertheless, we had over 100 people, including some cousins who drove from New York and St. Louis just for the party. In order to make it easier on Linda, we limited the time from 5 to 8pm this past Saturday. So if you didn't make it, don't feel bad; most people only got to talk to her for a few minutes each. And we captured the whole thing on video so we could share the surprise with everybody. (Click the play button above.)

The difficult part (for me, that is) was that before Andrea started planning the birthday party, the neighbors had decided to have a surprise Baby Shower for Andrea on the same day. So when Andrea told me we were going to plan Mom's party for that day, all I could say was, "Make it later in the afternoon." Andrea and Chris came in earlier in the week, and I watched as Linda and the neighbors conspired to arrange the baby shower, at the same time that Andrea and the neighbors were conspiring to make the final plans for the Linda's party. Of course, Andrea was sure the Engers wouldn't mind helping us by getting the drinks, arranging the coolers and getting additional patio furniture ready. What she didn't know was that they were also getting ready for having the baby shower at their house. To make matters worse, Andrea decided to go next door that morning to borrow a waffle iron, and poor Cindy Enger had to hide all the decorations and presents before Andrea showed up at their front door. (Andrea couldn't understand why we insisted she call first before going over.)
So a few hours and 10 more lies later, Andrea's baby shower finally came off nicely, as you can see.

The first thing the neighbors had to do of course was to take Andrea aside and tell her the shower would not interfere with the birthday party. Linda and Andrea got back home just in time for Linda to take a quick nap, while Andrea, Chris, Tony and Beth ran around the house, deck and yard straightening and cleaning up. At five o'clock, the doorbell rang, and Linda was expecting her niece and nephew, Mary Jane and David, who called to say they were stopping by. What she didn't know was there were 98 other people who showed up as well. So the second party of the day went off really well, and Linda seemed to have more energy on Saturday than she'd had in a long time, no doubt from all the positive spirits coming from everyone in attendance.

Linda's Torisel treatments continue once a week, and so far she seems to be tolerating them well. Of course, that was true after the first three weeks on Sutent also. One thing this drug doesn't do is prevent the tumors from causing fevers, so we've had to deal with that using round the clock Tylenol, and being very careful not to exceed the maximum recommended dose of 4 grams per day. I would have said it was working fine, but today (Monday) she's back up over 101 degrees. I'm hoping it improves when she wakes up later this afternoon.

Again, to all the people who took time from their Memorial Day holiday to help make this a special weekend not only for Linda but for Andrea too, thankyouthankyouthankyou. It helps to know we have so many friends who are with us on this journey.

Jim

somethin's working!

Hello, everyone!
Well, it's nice to report some good news. I had a really good week last week...after the hospital stay. The Toricel treatments seem to be working, at least at making me feel less lethargic. I've had the stamina to walk up steps by myself!! and do a little housework like ironing and washing dishes. I know that doesn't sound like fun for most of you, but since I haven't been able to do it for a while, it sure gives me a great feeling of accomplishment. I'll be getting these treatments once a week for as long as I can tolerate the medication. Let's hope it's for a long time!
By the way, my first kidney operation was a year ago last Thursday. I've made it this far with all of your support and prayers. I'm constantly saying prayers of thanks for all of you....you're doing a great job!!!!
Love ya!
Linda

Back from the Brink

One thing Linda and I have learned is that when you have cancer, there's no reason to believe that today will be like yesterday-- you just take every day as it comes, and expect that every week will be interesting, to say the least. This week was no exception.

All the while we were at the hospital last Monday and Tuesday, Linda was on oxygen. Dr. Bhandari said that the lung tumors had grown to the point that breathing would be difficult, and since the new medication (Torisel) would at best slow tumor growth, not reverse it, he did not expect her breathing would improve. So we went home with an oxygen tank and an appointment with a home oxygen supply company. Within two hours of using the home oxygen condenser, Linda got a bloody nose, and stopped using it. I went out and rented a pulse oximeter (the thingee that measures blood oxygen levels) with the intention of showing Linda that she needed to use the oxygen, but the oximeter showed her levels were normal, even without using oxygen. We checked it almost hourly for the next three days, and her blood oxygen level was the same as mine. So much for the home oxygen unit.

When we mentioned all this to Dr. Bhandari later in the week, he was pleased but surprised. He felt that a combination of the blood transfusion and Torisel worked better that he had expected. So Linda had a fairly good week, but still is having trouble maintaining her weight.

Today was the second Torisel chemotherapy treatment, and it turned into a marathon visit. We arrived at 12:15 and didn't finish until 5:45. Part of the problem was that Dr. Bhandari wanted the blood tests done over, because the first one was "too good to be true". Linda's blood protein level was in the normal range for the first time in three months. The second test showed the same result. He said he still didn't believe it, so while we could go ahead with the Torisel IV, he wanted us to get her blood tested tomorrow at a different facility.

With only two IV treatments so far, it's hard to say if there will be any difficult side effects in the future, but for now things are stable. We can't wait to see what the next week holds.

Luv ya all,
Jim & Linda

It can't always be good news

Hi everybody, Jim here. Things have not gone well since the last post. Even as Linda was posting on Sunday, she was not feeling well, and by Monday we decided we couldn't until Friday to see the doctor. We called him that afternoon, and told him Linda was very fatigued and short of breath. He sent us to the ER at Christ Hospital for blood tests and the CT scan that we would've had on Tuesday anyway. It's hard to describe how frustrated we became as all the information and directions were so poorly communicated between the doctor and the hospital. Eventually though we did get the results and they were not good. Linda's hemoglobin level had fallen again only three days after the last transfusion. Even worse was the news that the Gemzar did not appear to be working, as the tumors in her lungs had increased in size since the last CT scan a month ago, and this was likely the reason for her shortness of breath. They admitted her to the hospital and spent the night transfusing 2 units of whole blood from 2am to 9am. This morning we saw Dr. Bhandari and he told us we would have to switch to a different treatment known as Torisel. He couldn't be sure of the effectiveness of this treatment, but he said there weren't many other options left. Torisel is administered as a weekly IV, so we stayed in the hospital today and they are infusing it even as I'm writing this. Assuming there are no adverse side effects, they will send us home tonight so we can hopefully get a better night's rest than last night. I know everyone is praying for her, but please say an extra prayer tonight. We'll be thinking of all of you as well, and saying a prayer of thanks for all our friends who are standing by us.
Thanks, luv ya,
Jim

P.S. from Linda: Thanks, Ryan for your thoughtful gift. It made my day in the hospital.

All clear

We got good news on Thursday - Dr. Bandari called and told us that all of the bone and hip scans were negative. Needless to say, we were very relieved by the news. I was off Sutent for a week, but I was able to go back to a low dose on Friday. The next step is a CT scan next Tuesday to find out if the Gemzar treatment was effective.

This weekend was a great time to see family and friends. Andrea and Chris came in on Wednesday, Tony and Beth came in Friday, and then on Saturday we all went to my niece Eleanor's wedding. The weather cleared up just in time to make the afternoon beautiful. I even felt well enough to get up on the dance floor a couple of times. Who can resist "Hang on Sloopy" with all the Ohio State fans there?

Again, thanks for all your love and support...

Love ya,

Linda