Quiet Sunday

This is Andrea, writing on a quiet Sunday after a busy and tiring Thanksgiving weekend. Tony and Beth came in late Tuesday night, and Chris flew in Wednesday night, so we've had a full house! On Thursday, we had Jim's family over for Thanksgiving dinner (which we ordered from Burbank's to make it easy on ourselves). We had a great time catching up with everybody and the food wasn't so bad, either.

Friday, we had a brief visit in the morning from my friend Erica, then we went to my cousin David's house for a second Thanksgiving dinner. The entire family was there--22 people and we all sat at one big table! Again, it was wonderful to see everyone and I would especially like to thank everyone who made accommodations for us vegetarians. Everything was delicious. My mom's sister, Pam, presented my mom with a framed piece of art with inspirational phrases from everyone in the family. It was very touching and beautiful.

From there, my mom, Chris, and I went to Badin for game night. It was very special for her to see all of her students who have meant so much to her over the years, and it was neat for me to meet the people I've been hearing about for so long. Many, many games of SET were played, but not by mom, who was too busy catching up with old students and friends.

All this time, mom had been feeling pretty good. Saturday she started getting a little tired. But we had a nice visit from her cousin Jack and his wife Kathy, who live in Chicago, and then enjoyed dinner (Indian and Chinese take-out) together as a family. After that, we decorated our Christmas tree while listening to Christmas music. It was a very Norman Rockwell moment-- we even had Tony and Beth's dog, Marco, there to supervise.

Mom started taking a different medication for high blood pressure yesterday. When she first started taking Sutent 3 weeks ago, she had to exchange her regular bp medication for a different one, because the one she was on would interfere with Sutent. Since then, she has had pretty high blood pressure. Sutent also makes blood pressure go up. So dad has been in contact with many doctors, trying to find a medication that might work better, but not interfere with Sutent. So she started taking a new one yesterday. Today she feels pretty crummy--tired and nauseous. And Wednesday will be her last dose of Sutent for 2 weeks, so who know what will happen then? At least the new medication is doing its job--her blood pressure has gone down a little bit.

Tony and Beth left this morning, and today will be a peaceful day of watching football, I hope. Chris and I leave tomorrow morning for Wilmington. We will be sad to go, but I know we're leaving her in good hands with all of you!

Thanks so much for everything--the prayers, food, and gifts are all very much appreciated!

A day out!

Hello and Happy Thanksgiving!
Well, I had my best day yet yesterday--no pain and pretty much energy. I even felt well enough to go to TriCounty with Andrea and do some shopping. Fortunately, we were able to borrow a scooter because I would not have been able to walk for that long. We only had one slight mishap when I "almost" knocked over a mannequin! Some of the aisles were a little narrow to manuever, but I got the hang of it after a while. We had a great day and it was nice to do something "normal" like that with Andrea.
Today was a little different. I guess I overdid it a little yesterday because my energy level today was really low. I just never know from one day to the next.
Andrea continues to clobber me at Set, so it's not me that everyone should be afraid of on Friday night, it's Andrea. We have my family's Thanksgiving that day and then I surely hope to be able to make it over to Badin in the evening. I can't wait to see everyone and thank them for all of the prayers and good wishes that have come my way. I'll try to take it easy to build up my strength for that big night.
Until then, love to all of you,
Linda

Andrea's Back!

Hi to all. This is Linda reporting in again. I hadn't been feeling well the last couple of days; I had pains in my back, side, and shoulder. Fortunately, Tylenol has helped a little. But today was a better day, and I actually felt good enough to go to Queen City Racquet Club for a massage, compliments of my tennis buddies. It was my first massage ever, and it was a great experience, very relaxing and invigorating.
Andrea got in yesterday (thanks Heather, for the ride), and we've been spending our time watching tennis and playing SET. We hope to do some Christmas shopping soon if I feel up for it.
I'm at the half-way point with my first round of Sutent. Things seem to be going well, and we're keeping our fingers crossed for the next two weeks.
Thanks for checking in. Ta ta for now!
Love, Linda

No news is good news

Hi, everybody!
It's Linda this time. I was starting to feel guilty that we hadn't updated the blog lately! Tony and Beth were home this weekend, so free time was at a premium. There's not a lot to tell on the medical front, but for the first time in about two months I was able to go out with my friends. What a joy! Sue and Gina planned a get-together on Friday night for a lot of the adults who had been on the Kairos retreats from Badin HS together. Fr. Greg happened to be in from St. Louis and he agreed to have a home Mass for all of us. It was truly a special evening and everyone there showed me such wonderful love and support that I was just overwhelmed.
Unfortunately that evening kind of whiped me out so that I was not able to attend the fund raiser for the Aids hospice in Africa which was the next evening. I had hoped to travel to Africa this January with my cousin, Connie Naber, who is building this hospice. ButI found out about my cancer just when we were to make plane reservations. What a bummer! Anyway, my sister,Pam, said the event was a big success and that Connie had done a terrific job.
I continue to do well on the higher dose of Sutent. I haven't noticed any different side effects and I feel pretty well most days. Right now the only concern is my high blood pressure (which is getting even higher) but my doctor is working to get that down.
Thanks to all of you for staying in touch and for all the prayers you are sending my way. Not for one second have I felt alone in this fight.
Love ya!!!! Linda

Hey, this stuff's got a kick to it...

Hi everybody, Jim here. As I sit at the keyboard writing the blog tonight with one hand (sore arm--flu shot), I realized that the last time I wrote the entry was to deliver the sad news that the IL-2 wasn't going to work. That was just over a week ago, although in some ways it seems like a month. For those of you haven't read the early entries in the blog, IL-2 was considered the only possibility of a complete, permanent cure. It worked by putting the body's immune system in overdrive, and getting the immune system to recognize and fight the cancer cells more effectively. It only worked in about 10% of the cases, so we always knew it was a long shot. We all felt terrible that Linda had to endure the horrible side effects of the treatment, but we're glad she at least tried it, because if she hadn't, we always would have wondered if it might have worked. Everyone in the family, Linda included, agreed we had to try.

So now it's on to a group of drugs referred to as "targeted therapies". These don't directly affect the renal cancer cells either, but in the case of Sutent, they retard the growth of blood vessels around the tumor sites, thereby cutting off or at least decreasing the blood supply that the tumors need to grow. The drug will eventually lose its effectiveness, but in some cases it has prevented tumors from growing for as long as two years. Then it's on to the next drug, and then the one after that. There are three of them approved by the FDA, and the hope is that by the time you've used them all, new treatments will be available. One of the big problems is as always, side effects. Some of them can be so debilitating that you just can't take the drug. Linda started taking Sutent the day after we returned from Boston, so it's been 7 days, and so far she's not experienced any of the really ugly side effects. What's more, it's had some dramatic impact.

On Monday, we noticed that for the last two days, her temperature hadn't been higher than 99 deg. (It was not unusual for it to go as high as 102.4 in the early evening.) So on Tuesday, we decide to stop the Tylenol doses every 5 hours and see what would happen. Remarkably, for the first time in two months, Linda didn't have a fever yesterday or today. We also stopped the nausea medication about the same time, since it looked like her appetite was improving. We then realized that she hadn't been able to sleep much in the afternoon for the past few days, even though she has needed a 2 to 3 hr nap almost daily since this whole ordeal started.

We saw the oncologist today and mentioned all this. He was encouraged and said this is all indicative of the Sutent being effective and the tumors being less active than they were before. Her hemoglobin levels were also way up (11.1, Patty), also a good sign. Then we talked about dosage levels. Linda is taking the maximum dose recommended by the manufacturer, but he cited some studies that indicated more benefit could be gained from even larger doses. Since Linda has so far not had any serious side effects, he increased her dose from 50 to 75 mg/day, which we start tomorrow.

So far I've mentioned all the good news. The fact is that Linda has lost 14 pounds and counting from her pretreatment weight. If her appetite continues to improve, we hope this will start back up, but we'll have to wait and see. And while she feels better, "good" is not the adjective she uses to describe her condition. But after all she's been through, we've decided to celebrate the positive news when we can get it, and deal with the rest as it comes.

As the doctor says, Tails up.

Luv ya all,

Linda and Jim

(and on Friday, we'll be Linda and Jim and Tony and Beth)

Reasons to smile

Hi, all!
It's Linda this time. Believe it or not, I'm home alone now. Jim's at work and the kids have gone back home. Ordinarily that would be very depressing, but, fortunately Tony and Beth are coming back this weekend and Andrea will be back the next week. They were just the greatest support while they were here, and I do miss them already.
The good news is that I'm starting to get some of my strength back. Each day that I've been on Sutent I've felt a little better--which has to be a good sign!!! In case we didn't explain it before, I'll be on this medication (just one pill a day!) for 4 weeks and then will go off of it for 2 weeks. During that time we'll get more scans to see how effective it was. I may be just in the "honeymoon phase" right now, though, because the side effects can get much worse and some people cannot tolerate even the whole 4 weeks in a row. So we'll see, but for now I'm going with the positive effects I'm seing now.
Each day I am more amazed by the wonderful support of family and friends. You're getting me through this in ways you'll never know. Bless you all!
Love, Linda

Tails up

Hi everybody - Today we visited two oncologists in town, in order to get restarted with a steady treatment in Cincinnati. So yes, that meant that all four of us shuffled in to the patient's rooms for the consult, and if either of the doctors were put off by the crowded conditions, they didn't show it. (And in what was probably a first in his life, Dad was complimented for his organizational skills.)

We don't have to get into the particulars about blood tests, scheduling and most of the other stuff that went on in the visits, but the important message we got from them was that the treatment with Sutent that Mom started yesterday has a good chance of shrinking Mom's type of tumors.

We have to share one more piece of information from the visit - Mom got a flu shot today, and the doctors said that her risk of flu would be even lower if everyone who spent time with her got a flu shot too. So if you'd like to visit in the next few months, we'd appreciate it if you make a date with the needle.

Also, for those of you who are asking what you can do to help, Mom has little request. For years, Mom would to give blood every chance she had, and now she happens to be more on the receiving end. Though there's no blood shortage that we know of, it would be great if some of you out there could go donate blood with Mom in mind and write to us in the comments about it, and hey, maybe even attach a link to a little picture if you can. If possible, see if you can credit the donation to the Badin High School faculty, which is what Mom always did.

Mom's still getting plenty of rest (yesterday was nice and low-key), and her appetite is still slowly improving. She normally eats a few bites of solid food on each meal now.

Thanks for the love,

LJA&T

P.S. Does anybody know what "Tails Up" means? Dr. Bhandari said it at the end of our visit, and we all kind of faked that we understood...