Happy New Year's Eve Eve

Hi everybody, Jim here. Well, it was a great Christmas, all things considered. Tony and Beth, Andrea and Chris all arrived on Saturday the 22nd. We went to my sister Mary Anne's house on Sunday, Linda's sister Pam's house on Monday, and we spent Christmas Day lounging around the house, eating and opening presents. Unfortunately, Linda woke up that morning with a stuffy nose that has turned into a really, really bad cold. Because of her high blood pressure, she can't take any of the good decongestents, so the head cold phase was pretty miserable. The kids were great though, making sure Mom was comfortable. Tony split all the firewood in the backyard and kept the fireplace going most of the week. Andrea even let Mom win one or two games of Set. We also got a Wii console for Christmas, so Linda and Andrea got to play tennis in the Family Room. It really is exercise, as you can see.

Tony and Beth left for Madison on Thursday, and Andrea and Chris left for Wilmington yesterday morning. We wanted to thank the kids for spending so much time hereaway from their homes, but also we want to say thanks to Ron and Rosie Rohlman, and Robert and Ann Talley for letting their children spend both Thanksgiving and Christmas in Cincinnati. We're sure it was hard for them, and we want to make sure they know we appreciate it.

Fortunately(?), Linda's cold has moved from her head to her chest, so the sneezing has been replaced by coughing. It's pretty much laid her out, so the last two days have been spent sleeping on the couch, while I challenge Tiger Woods on the Wii.

Oh, I almost forgot. Before the holidays began, we went to see the Oncologist on the 21st. Linda's blood test indicated everything was ok, except her hemoglobin levels were a little low again. So between the cold, the holidays, and the blood transfusion wearing off, it's no surprise she's so tired. We go back for another blood test next Friday, so we'll see if another transfusion is in the cards. Overall, Dr. Bhandari was really encouraged by Linda's condition. He said we have a good indicator in her temperature of whether the tumors are active or not, and when she's taking Sutent daily, things seem to be under control for now. And since she's tolerating the 50mg dose so well, his recommendation is to keep taking it and forget the "two weeks off" part. We probably won't go for another CAT scan until late February or early March.

It will be a low key New year's Eve celebration this year, but we will spend the evening remembering all of our friends, relations, co-workers and students who have done so much for us and have let us know how much Linda means to all of you.

It's crunch time!

Hello, everyone!
It's like a Christmas miracle! Since I got the extra quart of blood last week, I have felt like a new woman. I certainly have more energy now than I ever expected to have. I've even been out Christmas shopping (without a scooter!) and grocery shopping by myself. It's such a wonderful feeling to be driving again! Now the problem is that I only have a few days to do everything I can before the kids get home for Christmas on Saturday. But as I said before, this year everyone will understand.
I've been on 50 mg of Sutent since last Wednesday and we visit the doctor this Friday to talk with him about that. The last time he raised it to 75 mg, which is the highest dose, but if he wants to do that this time, I'll certainly ask to have it delayed until after the holidays. I don't want to spoil this good feeling! Also, I'm taking a medication to help increase my appetite and it is really doing the trick. I'm actually hungry now and certainly enjoying all of the goodies that friends are sending my way. Thanks so much!
This may be my last update for a while because things are getting a little hectic right now. Please know that my Christmas prayer this year will be for all of you who have been with me through these trying three months. I feel like I've had an army of supporters behind me every step of the way. I couldn't be more grateful, or more humbled. Love and Christmas blessings to all of you! Linda

Apparently, I was a quart low.

Seasons Greetings!
First of all, thanks to all of you who had such wonderful responses to our latest good news. That was quite a Christmas present for us. Now we just keep praying that the Sutent continues to do its job far into the New Year.
Fortunately, I felt well enough to do most of the fun Christmas things that I had planned last weekend. I would just spend most of the day resting and then getting ready, so by the evening I had quite a bit of energy to enjoy the event. Yesterday I started the second round of 50 mg Sutent, so I'm hoping that I can keep at this pace and not be slowed down too much this time. After all, there's only a few days left for me to get ready for Christmas. This year, no matter what I get done, people will understand. (There are some advantages to being sick!!)
On Monday I did get a transfusion of 2 units of blood. It takes about 4 hours, so I made myself pretty comfortable over at Bethesda. In the middle of it I was even treated to the Healing Hands women who do a half-hour relaxation exercise. That was something I had not expected!
Thanks to Denny and Trice for the rides and goodies. What a great feeling to know there are so many wonderful people I can count on!
Hope your holiday preparations are going well.......just don't stress out too much!
All of you mean so much to me and I appreciate everything you do!
Love ya! Linda

The Results are in....

Jim here, and for those of you who can't wait another second, it's good news. For those of you who would like more details, read on--

The Radiologist's report states that none of the tumor sites have grown over the past month, and the dimensions he gives for the ones he measured are somewhat smaller than a month ago.
(The largest lung tumor was 3.8 x 3.3 cm, now it's 3.3 x 2.6 cm. The renal cavity tumor was 7.0 x 7.0 cm, now it's 6.7 x 6.2 cm.) He refers to this condition as "stable", but by my calculations, the volumes of the tumors cited above decreased anywhere from 25 to 40%. If that's "stable", we'll take it.

What's more, the tumors have a central "necrotic mass". Because the tumors grow so quickly, the center portion dies from lack of blood supply, and only the outside is active. In the new scans, there is much more "necrosis" (dead cancer cells), and a much smaller active rim around the outside. Actually, a picture would do wonders here, but Linda keeps vetoing my ideas for photos on the Posts. :(

Finally, there are no new tumor sites, just the old ones that are somewhat smaller. So the drug that Linda started taking on November 1st is working as advertised--cutting off the blood supply to the tumors and preventing them from growing. It will never be a cure, but hopefully we can fight to a draw for the near future. So we're celebrating, and we hope you do too.

That's all the good news. The rest isn't really bad, just irritating...

The recommended treatment for the cancer drug (Sutent) is four weeks on, two weeks off. We were really looking forward to two weeks of getting her strength back and doing lots more. But Linda took the last pill Nov 28th, and as suddenly as the fever stopped when she started taking it, it just as suddenly started up again, within just a few days of the last pill. The fever is a strong indicator that the tumors are active. So the oncologist recommended we start taking the Sutent right away again after only a week off. Better to deal with the fatigue than the fever and what it means. Of course, there was the visit to the ER last week, and while her platelet count is back up, her hemoglobin level is low again, so Monday she goes in for a transfusion.

I've made it sound worse than it is. Last night, we went to the Playhouse in the Park. Tomorrow night we go to my Company Christmas Dance, Sunday is Christmas dinner out with the neighbors, and Monday night is Linda's sister Pam's Birthday dinner. She may be tired but she's also stubborn, and all of these events are important to her.

We really appreciate all the expressions of care and concern from all of you, and are so glad we can pass along our good news. Life is so much more fun when you can share the good parts with your friends.

Love ya,

Jim & Linda

p.s. I've got a great story about the Radiologist that I'll tell to anyone who asks me...

Date Night in the ER

Hi everybody, Jim here. First of all, Linda is fine. In fact everybody is fine, but we did spend 5 hours last night at Christ Hospital's Emergency Room. Ironically, the day itself went really well for Linda. After being off Sutent for 2 days, we were looking forward to her feeling stronger and better, and it seemed to be the case. That morning we went to a different doctor (Internal Medicine) to have her blood pressure looked at and make a recommendation on her BP medication. While we were out, she stopped at a mall to do some Christmas shopping and we even stayed out for lunch after the doctor's appointment.

But by 10 pm Friday night, she had a nose bleed. Now last weekend she was getting a little pink discharge whenever she had to blow her nose (which because of the meds was quite often). This was not unexpected, because one of the many side effects of Sutent we were warned about was bleeding from the nose. No big deal, this was tolerable we thought. Certainly not as bad as high blood pressure. Well, the bleeding got progressively worse as the week went on, but after finishing the first four-week round of Sutent on Wednesday, we figured we were home free and the symptoms would start to subside. Wrong!

To make a long story a little shorter, about 1am the bloodgates opened up, and we had a major mess on our hands. We called the on call Oncologist, and he told us to get down to Christ Hosp and he would let them know we were coming. Then it stopped. We had actually decided not to go, but by 3 am it was really bad again, so off we went. They tried several things to stop the bleeding, and after they checked with the Ear, Nose and Throat specialist, Linda ended up with a 3 in long piece of gauze that had an inflatable tube down the center in her right nostril, which doesn't come out till Monday morning. (Needless to say, Linda vetoed my idea of including a picture with this post.) This was all caused by low platelets in her blood (40,000 instead of a normal 100,000) that prevented her from clotting properly, as we understood it. Again, a direct result of the Sutent. We have to get that checked again on Monday as well, to make sure it's going back up and not down.

As Linda mentioned earlier, on Tuesday we get the CT scan, and the results on Friday, and we'll find out if this was all worth it.

Catch you later. Love,

Jim and Linda

PS-- Cindy, Dale, Joe, Tom, Craig, Larry, Mike---If you read this, Monday's Staff meeting is cancelled.

Two weeks off!

Hello friends and family!
Well, I took the last dose of the four week round of Sutent yesterday, so now I get two weeks off from that medication. Hooray! I'm hoping that I can get some strength back in that time. We'll see how it goes. I have tests and scans next Tuesday and then on Friday we visit the doctor to find out the results of the tests. Obviously, that will be a pretty tense day, but we're certainly keeping positive thoughts about what the results will be.
I know that Andrea wrote the last blog about the Friday night gathering at Badin, but I wanted to add my two cents worth. I can't tell you how much I appreciated seeing everyone there and catching up with so many former students. It was a truly special night for me. Thanks to everyone who came and, especially to Mrs. Helms who organized, planned, set up and cleaned up at the event. (Thanks to Dave Gretz and Linda Weathers, too!) The whole night certainly made me realize the many things in my life that I have to be thankful for and how blessed I am to be part of the wonderful Badin community. You guys are the best!
Love ya! Mrs. Wimmers

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...

Back home

Hi everybody - Tony here. We're all sitting in the family room right now watching some tennis, relaxing. Just before this, we all went outside to hang with the neighbors for a while for Halloween, catching up with each other and getting visits now and then from many boldly dressed but soft-spoken neighborhood kids.

We left the hospital to fly home around noon today, after meeting with both our nurse practitioner and Dr. McDermott. As always, Dad was diligently coordinating between Boston and Cincinnati to find the quickest and most expedient way to get along with treatment, which was no easy task considering all the strain we were under today and yesterday.

At this point it has to be said that the people at Beth Israel Deconess were all excellent - attentive, professional, compassionate ready with answers and always ready to help. And although we didn't leave in the best of circumstances, at least we feel like we've gotten the best help we can get, and thankfully Mom is returning in better condition than when she left on Sunday.

The flight was blessedly uneventful, and we arrived in Cincinnati greeted by Andrea's warm and loving smile. We all hugged and then were out and on our way back home, sweet home. Now we'll all be home together till Sunday.

On Friday we meet again with the doctors, and in the meantime we'll all work on getting Mom to move from smooth to more solid foods. Her appetite has been improving daily since we started in Boston, so we're hoping this keeps up on an upward trend. Thank you Wan, Mom enjoyed your ice cream tonight.

Thanks everybody for keeping us in your thoughts and prayers. Talk to you again soon.

Much love,

LJA&T

A Disappointing Change in Plans

The news from the CT scan was not good. Dr. McDermott came in this morning and explained that Linda's trouble with eating and nausea is likely due to the tumor in her abdomen pushing against her large intestines. He told us that this tumor, as well as the tumors in her lungs are growing much faster than anyone expected. For this reason, he recommended against continuing the IL-2 treatment. He said that even if effective, it might not act quickly enough and we would lose precious weeks waiting to see what would happen.

The other treatments, such as Sutent, can shrink the tumors and in some cases have worked for a couple of years, but do not have the chance of a permanent, long term solution that we were hoping to get from the IL-2. So for now, they recommended that we head back to Cincinnati and they will contact our oncologists there to work out an effective treatment plan as soon as possible. So we will return tomorrow.

This is all disappointing news, but we are not giving up, and we know you won't either. And we will need your support now more than ever.

Luv ya all,

Linda, Jim, Tony and Andrea

One Step Backward

Well, we made it to Boston last night just fine, and "checked in" to the hospital this morning. The surgeon even put the line in and everything was a go for the first injection at 3pm. But Linda started getting nauseous again around noon and everyone's antennae went up. Dr. McDermott felt it was unusual for her to still be nauseous after all this time, so he wanted Linda to get an abdominal xray just to see if there might be some sort of blockage in her digestive system. The xray didn't happen till 3:30, and it came back inconclusive, so now they want to do a CT scan. That won't get read until tomorrow morning, so that means no IL-2 tonight. Worst part is, Linda has to drink that awful Barium solution. The bottle is more than she's had to drink all day today, but she's being a trooper about it, as always.

The blood tests also showed a very low hemoglobin level. It's 6, and it was 8 when she left the hospital last time, and normal is more like 12. Linda's always been anemic, but this was really low. They feel this may also explain her fatigue, and they plan to give her blood when we get back after the CT scan. It would be great if that helped.

On the plus side, Tony's here! He arrived safely around 1:30, and has been running errands and taking care of Mom. Running errands is more complicated than it sounds. The apartment that Tony, Andrea and I will be alternating evenings in is part of the hospital arrangements, and because they are sometimes used by bone marrow transplant patients, there is nothing, nothing in the apartment. No sheets, no pillows, no shower curtains, not even shower curtain rings. So Tony was on a scavenger hunt. Fortunately there's a Bed, Bath and Beyond up the road, so we're all set for the week now.

So now we hope for the best tomorrow. I'm not sure how I'm going to get thru the week myself-- I've only got one fingernail left. There's no way it's going to last the rest of the week.

We'll let you know what we find out tomorrow.

No News is Good News

I said I'd check in so here I am. Eat, sleep; sleep, eat; sleep, sleep. We also walked halfway up the street this morning, a new record since we got home last week. Everything we do right now is focussed on getting on the plane Sunday afternoon. We're both a little nervous and hope that nothing comes up to change our plans. Also, once we get there we'll get to see Tony and Andrea! Please keep your fingers crossed with us. Those of you who are flexible, toes too.

Luv ya,

Linda and Jim

Wednesday Night

Hi everybody,

Jim here. Sorry for not posting recently, but there's not a lot to report right now. Linda spends most of her time sleeping and, thank goodness, eating. Today was the second day in a row that she ate 3 meals. The biggest problem right now is her fever, which is not that uncommon with cancer. It's mostly low grade, but once the Tylenol wears off it can go up to 101. We hope to start reducing some of the meds (nausea, heartburn, decongestant, diarrhea) as the week progresses, with the hope that we can be down to just Tylenol by the time we leave for Boston. Patty, if you have any suggestions don't be shy. I'll probably check in again Friday night.

Night all, Luv ya,

Linda and Jim

One Step Forward...

Hi, everyone! It's Linda this time. I thought this blog would be written from Boston this evening, but that is not the case. When we consulted on the phone this morning with Virginia, the nurse practitioner, and told her of my condition at this point, she suggested that maybe we delay the next round for a week so that I could be in a stronger position when starting next Monday. If we just delayed it a day this week, it would cause their weekend staff to be off schedule. I was still feeling rather weak and tired this morning, so I agreed that delaying a week would give me a better chance all around for the next round of treatments.
Of course all this meant changing airplane and hotel reservations, both for us and the kids who were going to come in shifts this week. Jim has been so patient in doing all this. Thank goodness I have him to take care of all of the details!
So now I have a few days to stay home, rest, and try to EAT to get my strength back. I really haven't f
elt like eating anything this week, so now I'm hoping to enjoy the good meals in the refrigerator downstairs, made by wonderful friends and neighbors. As always, thanks for every act, whether small or large that any of you have done for our family. There's no thank you note big enough to include all of our appreciation and love.
Linda and Jim

Linda's Feeling Better

Alright, maybe not well enough to go zip lining, but better. Still very tired and not much of an appetite. She's getting around pretty well, and while no one is looking forward to doing this all again on Tuesday (we leave tomorrow), she is looking forward to getting it over with.

BTW, the picture is from our vacation to Alaska in July. Linda is about 100 feet in the air above the rain forest in Ketchekan, zipping between two trees about 300 yards apart. For those of you who didn't know, Linda is afraid of heights, so this was an especially big deal.

Wish us well on the trip. We'll be in touch, if not tomorrow then definitely Tuesday.

Love Ya,

Linda and Jim

Day Four

Quite a lot of progress today. Linda ate breakfast, lunch and dinner. Ok, ok, breakfast was half a bowl of cheerios, lunch was soup and dinner was soup, but we're celebrating anyway. Lots of force-fed Ensure in between as well. We cut way back on the nausea meds that were making her drowsy all the time. We also went outside and walked around the circle 3 times.

Breathing is still a chore for her. We were able to find a Pulse Oximeter like they have in the hospital that measures oxygen levels in your blood. I think that convinced her to take this deep breathing stuff more seriously, and by the end of the evening she was able to maintain 95%--not great, but better than it was earlier in the day.

So we're looking forward to tomorrow. Solid food, here we come!

Linda and Jim

Third Day

Well, the anti-nausea meds seems to be working. Today was the first day Linda kept everything down. But (there's always a but) the anti-nausea meds cause so much drowsiness that she's barely able to stay awake. Virginia, the Nurse Practioner from Boston actually called us today when she heard from Dr. Glotzbecker about our problems yesterday. Between her conversation and a later call we made to the on call Oncologist, we decided to cut back a little on the Ativan and see if we can keep her awake tomorrow. You can't imagine how relieved I was to actually see her eating something for the first time in three days (thanks for the soup, Wan).

Breathing is becoming a problem again. With so much sleep and so little movement, her lungs aren't getting much exertion. Once she gets some strength back and starts moving around more, I'm hopeful this problem goes away.

It's hard to believe we are actually going back on Monday to start the second round on Tuesday. Virginia told us to call on Monday morning to let them know how Linda was doing, and they could always move it back a bit. I guess we'll see how the weekend goes.

Two new blog developments--I've fixed the time stamp at the bottom of the post, which was driving me crazy, and more importantly, I think I've fixed the comment option so you don't have to sign-up first to make a comment--I know that was driving some of you crazy. Let me know if I was successful.

Thanks for all your thoughts and prayers,

Linda and Jim

Second Day Home

Sorry, not very creative titles right now. We spoke with Dr. Glotzbecker in Boston about an hour ago, 6:30pm. (Yes that's right CE people, Dr. Glotzbecker's husband and Melissa Glotzbecker's husband are third cousins). She was not as concerned about Linda's constant nausea as we were. She said one day was not unusual, but that after two days we should be much more aggressive with the anti-nausea medication, alternating the Compazine and the Ativan every 3 hrs round the clock, and the Zantac every 12 hrs. They gave us these pills and we should be using them, she said.
She was also relieved to hear that Linda was drinking and processing lots of water, which meant her kidney function was returning to normal. I guess we'll push the nausea meds and try again in the morning.

Luv ya,

Linda and Jim

First Day Home

Well, we'd like to tell you that Linda's feeling a lot better, but that 's not the case. She's feeling a little better, with the emphasis on "little". There have been several bouts of nausea today and last night, which not only makes it difficult for her to get any of her strength back, but also makes it difficult to keep track of which medications are staying down. She's had lots of nasal congestion which none of the doctors listed as one of the side effects, so we wonder if it isn't just good old Cincinnati seasonal allergies. Whatever it is, it's preventing her from breathing through her nose and getting a good night's sleep (or an afternoon's sleep for that matter.) Sudafed didn't work, but a nasal spray seems to be providing some relief. We'll find out for sure tonight.

We're sorry we didn't thank everyone for the cards that were sent to the hospital, but that's because they never arrived. At first we thought it had something to do with the bone marrow patients, and not bringing anything in from outside, but on the last day, we asked about it, and the nurses said they should have been delivered. We're sure the address was right, because a FedEx package arrived with a necklace (thanks Vicki and Charlotte.) They said the mail may have gotten stuck at the clinic and they'll try to retrieve it before our return. If only this was the biggest of our problems.

Linda's lungs still have some fluid, and between this and the nasal congestion, breathing is a full time job that she has to think about and not take for granted. On the plus side, we actually walked outside for a bit today, if only to the other side of the circle. Once she starts holding solid food down, things should start looking up.

We hope to have better news tomorrow.

Love ya,

Linda and Jim

Home Sweet Home

Hi everybody, Jim here. I said we'd post later so I thought I'd better check in. It's 11:30pm (I don't know why that stupid time marker at the bottom of the post is always off, but it is), and Linda is finally resting comfortably in her own bed, as I will be shortly as well.

I'm sure we have the reputation at Beth Israel Hospital as the "last minute panic family" after today. At 9am Linda's oxygen saturation level was still only 92% even with 3 l/min of oxygen going in her nose thingee all night. Once again everybody was telling us that we would be staying another day. Linda still had fluid in her lungs causing the low O2 levels, and the Lasix (now being given orally since the line had been removed) would not act quickly enough to decrease the fluid levels. They could administer it through a seperate IV, but the Nurse Practicioner said excessive urination might result, which would not be good for a plane ride. On the other hand, traveling with low oxygen saturation levels could cause respiratory distress on the flight home which would not be good either. Better to wait until tomorrow. But after everything that happened this week, we knew better than to cancel the plane reservations. Around 11am Linda used the restroom for the umpteenth time, and we forgot to put the O2 back on (the line doesn't reach to the restroom). It had been off for 15 minutes when Dr. McDermott showed up. Everybody decided, what the heck, let's check the O2 again. With everybody in the room (McDermott, Virginia the NP, Gretchen the nurse), she registered 94% with no O2! So Dr. McDermott suggest gettting out of bed later on and checking it once more as she's walking down the hall. So around 1pm we do just that, and Gretchen now gets a reading of 97%. We finally get the all clear sign, and Virginia started writing all the prescriptions for home (seven of them), Gretchen started writing the discharge instructions, and I started throwing everything in suitcases. (I swear, after a week it looked like a family of gypsies had moved into the room. Come to think of it, that's about what happened.) Hugs all around for everybody as we leave.

The trip to the airport and the plane ride home on one of Comair's toy airplanes were not the most comfortable for Linda, but she made it without incident. If only we had thought to take some anti-nausea medication before we left the hospital. We finally pulled on to Trestle Drive around 8:30pm, and another Good Samaritan Neighbor (Cindy Enger this time), stayed with Linda while I ran to the pharmacy to fill the prescriptions. Our front porch was already decorated for Halloween, with lit Jack o' Lanterns, flowers, and balloons strewn about, and the lawn mowed. (We don't know who to thank yet, but Trestle is like Wisteria Lane, secrets don't keep forever.)

It hard to believe we only get 5 days of recuperation before we head back to Boston next Monday to do this again. But if it works, it will all be worth it. Sometime over the next few days, I'll try to explain what the IL-2 treatment is expected to do. But not now. Now I'm going to bed. I'll let you know how Linda's doing in the morning.

Thanks everybody, your friendship means the world to us.

Linda and Jim

O Happy Day!

We're outta here! It was touch and go with the blood oxygen levels but it's 1:30p and we're leaving for the airport. More later tonight.

Love ya,

Linda and Jim

Slowly but surely

Sorry this post is so late, but Google's blogger service was down earlier.

So it's been a day of slow improvement. Linda ate a little real food for breakfast, the first time in 3 days (thanks to Dunkin Donuts). The hardest part of the day for all of us was when Andrea left at 11am. But by then at least Linda was able to get out of bed. Around 2pm they disconnected her from the constant IV drip and gave her Lasix to start reversing the fluid retention problems. There was still fluid in her lungs, so she still has oxygen to keep her blood oxygen level up. At 9pm, they've decreased the oxygen flow and the plan is by the morning it will be off completely. The other big problem right now is just being weak from lying in bed most of the time. We've taken to strolling down the hallway occasionally with a portable oxygen tank to build up her strength for the walk through the airport tomorrow (I'm sure she's going to refuse to get a wheelchair). Then lots of napping in the afternoon, and a real dinner.

If anything, Linda's getting a little impatient that it's taking longer than she wanted to start feeling better. We're really looking forward to getting on that plane tomorrow.

Love ya all,

Linda and Jim

Andrea, thank you so much. we don't know what we would have done without you.

She made it to 11

Last night, Linda's symptoms multiplied and became more severe. You know that description of IL-2 treatment that we mentioned, "Like the worst flu you'll ever have"? We finally found out what that meant. Shortly after the 10th dose at 4pm Saturday, Linda started having breathing problems. The fluid retention that had been going on started causing fluid build-up in her lungs. Her respiratory rate was in the 35-40 bpm range. She was getting very uncomfortable, so they started her on oxygen. Her bicarb level was dropping too, and they added that to her IV. She also started experiencing some of that itchiness we were warned about. So with all the nausea and diarrhea on top of everthing else, and her BP down to 92/50, Dr. McDermott recommended skipping the 11pm dose.

At 6am she wasn't feeling much better, so Dr. McDermott said to hold the 7am dose until he could personally assess her. He came in a little after noon today, and by that time her BP was back to 123/78 and her breathing was back below 30 bpm. He said he would recommend one more dose, but since the symptoms would likely return, that would be enough. 11 doses was a lot according to him, and he is satisfied when patients get at least 10. Despite her evident distress, she told the doctor she was ready for another one, and she took her eleventh dose at 1:15pm.

Through the night and all day today, Linda has been in obvious discomfort, but has never complained. She's insisted on getting up to walk around several times today even though she can only make it 50 ft or so, because the doctor said it would help clear the fluid in her lungs. She's been a real inspiration to us, as always.

It's about 6pm, and she's resting, but not exactly comfortably. We're all looking forward to the symptoms subsiding, as they hopefully should later this evening or tomorrow. Monday should be a day of recovery and we hope we get to make the 4pm flight home Tuesday. It will be nice to be back with family and friends, although thanks to Al Gore and his Internet, it's like you've been with us through it all.

Luv ya,
Linda, Jim & Andrea

Ten doses down, four to go! (hopefully)

Hey everyone, Andrea here. Mom's sleeping. It's Day Four of treatments and things are still going relatively well. She has not yet had to miss a dose and the expected side effects still haven't been too bad. She continues to maintain her normal positive attitude, and has shown temendous strength and will-power. She is determined to get in as many doses as possible to improve her chances of having a positive response to the treatment. Everyone out there who is pulling for her owes her a BIG "thank you!" when she returns to Cincinnati, as she is going through all this for all of her loved ones as much as for herself.

On to the side effects: IL-2 causes capillary leakage and temporary reduced kidney function, which causes weight gain and skin redness and irritation. For all of you who have always wanted to fatten her up, Linda currently weighs 14 pounds more than normal! (Don't get too excited, it's just fluid and she'll lose it fast). Her skin is glowing like she has a sunburn, but so far the expected itchiness has not been too bad. The nurses keep telling us to look out for strange dreams, as hallucinations caused by neuro-toxicity are one of the reasons why some patients have to skip a dose of IL-2. Linda keeps telling them that she always has funny dreams, so that would not be unusual for her!

It seems that the most frustrating thing for her so far is not having an appetite at all, despite taking medication for nausea. She wants to eat, and really misses eating, but doesn't have much of a stomach for it. If we can time it right and she can eat soon after taking her nausea medication, she has been able to put down a few bites. On this topic the nurses say to eat as much or as little as she wants, and not to worry if she doesn't eat. Most IL-2 patients don't eat much during their hopital stays.

This morning Linda said that as bad as she felt, she actually felt better than she did when she first arrived at the hospital. However as the day has gone on, it's now getting to be neck and neck.

Jeff and Fran, college friends who now live in Boston, stopped by for a visit today. It was great to see them and have other visitors in the room besides the nurses!

Linda is still sleeping a lot (which is very good for her), but today she also has felt up for playing Yatzee and Set, finally finishing that movie (thanks David T), and writing a thank-you card or two. She also enjoyed the CD you made for her, Susan. Thanks!

To everyone: Thanks again for all of your love and support. It gives strength to us all.

Linda checking her blog

Two of Linda's nurses, Amanda and Gretchen

Still hangin in there

Today has been much like yesterday. Medicines, IVs, a shower, a little food, and lots of waiting. At around 8:30 this morning the nurse said that Linda was to receive a blood transfusion because of a low red blood cell count (anemia) which showed up on her 4:00 AM blood tests. This just involved Linda signing another waiver and the nurse running one more line into her catheter. It took about three hours total. The various liquids they are pumping into Linda are shown in the picture (taken this morning). The doctor said that the anemia was mild, but it is standard procedure to give a transfusion in the case of anemia during IL-2 because the treatment seems to work better when patients have a higher red blood cell count.

The doctors still say to expect worse side effects tomorrow and Sunday, but said that Linda is doing very well, relatively speaking.

Otherwise, Linda has passed the time playing Set and Boggle with Andrea, watching a movie and TV, working on a Sudoku puzzle, reading e-mails and blog responses, eating a little, and sleeping. We are all looking forward to the Red Sox game tonight (sorry, Tom). On another note, Jim and Andrea have both had a chance to take advantage of the hospital workout gym, which was a nice stress relief for both.

Thanks again to everybody for checking in. It's so nice to feel connected from so far away!

Love you all!
Linda, Jim, and Andrea

So far, so good

It's around 5 PM and Linda just got her fourth IL-2 treatment. Ten more to go (we hope). The first one was certainly the most exciting. About an hour after we last posted, Linda got the first and most severe of the side effects so far, namely "the rigors". This consisted of severe chills and uncontrollable shaking from head to toe. We were warned of these ahead of time and called the nurse as soon as they began. The nurse hurried in with warm blankets and a demerol IV. The rigors lasted for about 20 minutes total until the demerol took effect. Andrea and Jim held her hands and legs to keep her on the bed.

Needless to say, we were all relieved when that was over, but a little nervous about the next injection, which would be at 2 AM. For that reason, Jim and Andrea both spent the night in the hospital. Fortunately, the rigors have not returned. Apparently it is most common with the first injections.

Other side effects she has experienced are slight nausea, temperature changes, fatigue, and hypotension (low blood pressure), all of which have been managed quite quickly by the nurses so far. We hear these and other side effects get worse on the third and fourth days.

We are extremely impressed with the care here so far. The nurses have all been very friendly and helpful, and are well-equipped and experienced to handle the side effects of IL-2. We have a double room to ourselves so between the second bed and a cot, we are quite cozy in here. Between 8-hour injections, 4-hour vital-sign-checking, and 6-hour meds, Linda didn't get a lot of sleep last night, but rested well this afternoon for about 4 hours. She also was able to take a shower this morning which was very refreshing for her.

We REALLY enjoy reading all of your comments and e-mails. We keep the blog up all the time, and whenever a new one comes in, we make sure to read it aloud to each other right away. They are morale boosters, for sure. It's great to know how many people are out there pulling for Linda.

We apologize for the phantom e-mail that was sent to some of you this morning. We accidentally posted a blank blog and then removed it when we discovered the error.

By the way, thanks Jack and Joe for the care package. As you can see, the nail polish made it to the hospital.

Love you all,

Linda, Jim, and Andrea

Another Roller Coaster Ride

What a day. Linda ate dinner (quite a lot) and kept it down with no problem. She was feeling really good as we went to sleep, with big plans for the next day. Around 3am, Linda thought she should take some Tylenol just to get ready for the morning. The night-shift nurse decided to take her temp first, and it was 102! Checked it again, 102.1. Once again, that was it. The nurse said a temp that high was a sign of some type of infection, and they won't give IL-2 under those curcumstances. Besides, IL-2 raises the body temp, and you can't start with a temp that high. She told us how sorry she was, but they would draw blood for 24 hr blood cultures and see if they could identify the type of infection. She said they would send us home with antibiotics and wait until the infection is gone. So at 4am we called Andrea and told her not to come. At 7am I started looking for flights back to Cincinnati. Needless to say, we were numb by this time.

At 8:30am, the Nurse Practioner came in. She asked, "Ready to go?". We thought she meant to leave, but she was talking about STARTING TREATMENT! What the heck? She said she spoke with Dr. McDermott, and they were convinced that Linda's white blood cell count was normal, and the fever was not due to infection. They drew blood again to make sure, and checked her temp at 10:00am (No tylenol for 6hrs)- this time it's 98.1. At 10:30 we call Andrea back and tell her it's back on. She drives to the airport at 10:40 and makes the 11:20 flight.

We would be more excited, but now they can't start until the surgeon installs the catheter in her chest where all the medication is administered. They only schedule this for the first day (yesterday), so the surgeon is busy all day today and can't come up until 4pm! ARGHHH!

Now at least Linda is feeling better, both physically and mentally. She eats a big breakfast and lunch and feels much stronger. The surgeon eventually shows up and starts installing the catheter just as Andrea walks in the room. It's now 6:45pm and the first IL-2 dose is finally being administered. Now it's really time to pray....

Jim and Linda

Nothing's ever easy....

It was not a good weekend for Linda. In addition to the persistent low grade fever and fatigue, she developed a bladder infection on Sunday. On Monday as we were at the airport ready to go, the flight was delayed one and a half hours till 6:45pm. Then she got nauseous on the plane, the first of several episodes Monday evening and Tuesday morning. Diarrhea began Tuesday morning as well. So by the time we arrived at the hospital, she was pretty much a mess. The nurse practitioner was on the fence about her starting the treatments, and when she heard about the bladder infection (and the fact that she was already taking antibiotics), that was it. As Linda was in the bathroom throwing up again, the NP said there was no way she would be able to start IL-2 injections in her condition. She said under normal circumstances, they would have sent her home and started some other week, but since we came from out of town, they didn't even want her traveling on a plane in her condition. So Dr. McDermott admitted her and started treating her nausea. He also ordered the blood tests and urinalysis to see what the extent of her infection was.
Anyway, by the afternoon, Linda was feeling much better. The tests all came back negative, that is to say that the antibiotics she took Sunday and Monday must have cleared up the bladder infection, and she thankfully didn't show signs of dehydration. She's started eating again, and our guess now is that she caught the 24-48 hr stomach virus that had been going around Cincinnati last week- at least that what we hope.
It's 6pm now, and assuming she continues to improve overnight, they plan to start the injections tomorrow afternoon, and just delay everything by a day. The big concern is that if she starts the process in a weakened state, she will not be well enough to get the full round of injections. So we wait and hope. Linda is right here in the room with me, and wants everyone to know she is feeling ok and looking forward to tomorrow. Your thoughts and prayers are deeply appreciated. We'll post again as soon as we have more information.

Love,

Jim & Linda

Three days to go!

Hello, all!
This will probably be the last post until we arrive at the hospital on Tuesday. Fortunately, things have calmed down around here lately. Jim is feeling much better now and we're just waiting and packing for the trip to Boston.
Some of you have asked for the hospital address. It's:

BIDMC
330 Brookline Ave.
7 Stoneman
Boston, MA 02215
Attn: Linda Wimmers

FYI, there are people in the same area undergoing bone marrow transplants, so flowers are prohibited. If there are any questions or you just need to get in touch with us, Jim's cell # is 513-254-7089 and mine is 513-720-5575. Andrea will be there too, and her cell # is 910-620-6020.

We plan on being temporary Red Sox fans while we're in Boston, so it should be an exciting time to be there.

I'm going into this with a very positive attitude because I've been buoyed by the love and prayers of so many of you already. I know that your support will get me through.

Love ya! Linda

Another interesting day for the Wimmers family

First and foremost, the nurse from Boston emailed Jim that "Linda has nothing between her ears". That's code for the CT of the brain was clear, and I am good to go next week.

While were in Boston Sunday and Monday, Jim developed an abcess on his tailbone that got bigger and more painful as the days passed. (You can imagine what the plane ride home was like for him.) Anyway, he got it taken care of this morning at Christ Hospital with the help of yet another Good Samaritan/neighbor, Tom Andrews.

If this weren't excitement enough, Andrea called this afternoon and told us about her day trip to Bald Head Island, where as part of her job as Recreation Director for the City of Wilmington, she was taking some older women on a tour and a walk up the Lighthouse there. Near the top, one of the participants (a 79 year old woman) collapsed, and Andrea at first feared she was dead. Paramedics were called, confirmed that she wasn't (dead), but still took another hour to get her back down. The woman turned out to be fine after a trip to the hospital, but Andrea was obviously shaken by the ordeal.

Jim and Andrea then proceeded to argue over who had the worst day. At least Jim was able to take Vicodin.

We're hoping for a liitle less excitement as we get ready for the Real Trip to Boston next Monday.

Love to you all,
Linda

Tuesday, October 2nd

Hi everybody, this is Jim. Linda is out tonight, so I thought I would send a quick note to let everyone know what hapened in Boston yesterday. Bottom line--Linda passed all her tests that we got the results for: the ECG, Pulminary Function, Stress test, blood work. The only test that matters that we didn't see was the CT Scan of her brain that they did at 5pm Monday night. Since she had an MRI of her brain only 3 weeks ago that was clear, we are hopeful they won't find anything new this time either. They said they would let us know today or tomorrow. The staff was great, and all our tests happened within 10 minutes of the scheduled time.
We got on the 6am flight this morning and are back in Cincinnati. The plan now is to go back up this coming Monday to start the IL-2 Treatments Tuesday. Thanks for all your prayers and support. Love ya,

Jim

We're off!

Hi, all!
Here's the latest update:
I was fortunate to get a call from the scheduling nurse in Boston saying that they had scheduled all of my pre-admission tests for this Monday. This means that if I'm cleared for treatment, I'll be starting with the hospital stay on Tuesday, the 9th. It would have been Monday, but apparently they celebrate Columbus Day in a big way up there! You'd think Columbus landed in Massachusetts! I'll be in the hospital until the 15th if all goes well, and then get to come home for a week. My next week of treatment would then start on the 22nd and I'd be home the 28th or 29th. I'd be able to stay home during the entire month of November with just a couple of one day visits back to Boston for new scans, etc. If the scans show improvement, we'll start the whole process again in December and then as many as 4 more times until all of the cancer is gone.
Another fortunate thing: the rooms in Boston are set up so that Jim will be able to stay with me at all times. That will certainly be a big comfort to both of us. He'll have his laptop with him, of course, so he'll be able to bring you updates as the week goes on.
So, please say an extra prayer that I pass all of the screening tests so I can begin treatment on the 9th. I'm anxious to start the battle. Thanks for all the love you've shown.
Love ya!!!! Linda

Finally, some time to breathe!

To my wonderful family and friends:
Well, we had the last of the "fact finding" appointments yesterday, this one with Dr. Bhandari, an oncologist with Mercy Fairfield, and now we're in the waiting phase to see when I can be scheduled for pre-testing in Boston and then admission. Dr. Bhandari was extremely nice and helpful. At first he thought that it was unwise for me to seek treatment in Boston, but after telling him all the reasons we had, he said that if it were him he would go for it, too, since it's the only chance of a true cure. He also said that if that treatment didn't work he would be happy to work with me in the future on which medications, or combinations of medications, would be the best next step. Needless to say, when Jim and I left that appointment we were just so relieved that the first step was over and that we felt very comfortable that our decision to go to Boston was the right one.
So now I do have a little time to be my normal self for a while. We have a rather busy weekend planned with family and friends, so we'll have some time to think of other things besides cancer and treatments. It'll be good to have some down-time! I'll probably say this at the end of each blog, but thank you all so much for your support, prayers and love. Each card or message means the world to me and is definitely helping to carry me through this time.
Love you all!!!! Linda

This looks like the place

It's Wednesday morning, and we're still digesting all the information we received yesterday at Beth Israel in Boston. We began at 4:15p and didn't finish until 6:45. During that time we met with two nurse coordinators, Dr. Glotzbecker, and Dr. Atkins. While we were there they even reviewed the Cat Scans. Dr. Atkins is the Director of the Biologic Therapy program, and was without a doubt the most knowledgable doctor we've met so far. The best news we heard was that the 5% complete response rate for IL-2 was old data and that the number is more like 10-12%. 1 out of 8 is better than 1 out of 20. Partial response rates are 20-25%.
He pulled no punches about other treatment options, and explained that IL-2 was our best bet. He also explained that they are experimenting with combinations of drugs like Sutent and Avastin and how thet show promising results. They have a separate wing for their IL-2 patients, and they do 4 each week, and 95% of their patients complete the whole course of injections (3/day for 5 days). We see one more doctor today in Cincinnati, but we're comfortable that we've found the right place.
As we write this, we are having breakfast with Fran and Jeff Tarvin, whom we stayed with last night. Thanks Jeff, Thanks Fran, for your wonderful hospitality and friendship. We feel truly blessed. Gotta run, we'll write more later.

Love, Linda and Jim

If it's not one thing, it's another...

We just got back from the breast biopsy surgery and the diagnosis was "duct carcinoma in situ with microinvasive disease". It probably sounds worse than it is because the surgeon said that it was a tiny site and she felt that she had excised all the surrounding tissue. She referred to it as stage 1 and said that the odds of it spreading were only 1-2%. She said that she would normally have recommended radiation and removal of a lymph node for examination. But given the circumstances, this is the least of the problems right now. She said to continue looking into the treatments for renal cell carcinoma (RCC) and to come back in 6 months to see her. We just feel like it could have been a lot worse.
We also had a chance to talk yesterday with an RCC survivor ( a veterinarian from Texas) of 4 years who has lived with metastisis for the past 3 years. He's been on 7 different medications, including two that we had not heard of before. They were for small cell lung cancers that weren't mentioned in the RCC websites we've looked at. Except for his IL2 treatment he has been able to continue working throughout his treatments. We thought that was encouraging news!
Tomorrow we are off to Boston to look into the feasability of the IL2 treatments for me. If we choose this option it means several more trips to Boston (which I've never seen before!). We'll keep you updated after our visit tomorrow.
Love you all! Thanks for keeping me in your thoughts and prayers.
Linda and Jim

Update for Sept 22nd

Hi, all!
It's me again! There isn't a whole lot of news to report, but I wanted to let you know about our trip to UC yesterday. Long story short, the doctor there is just starting a study combining Sutent with a new medication AMG 286. It's sponosored by a drug company and I would be the first UC patient in the study. Also, no one is being administered IL2 right now at UC, so I would be the only one to do it there. We were not too impressed, but the doctor did tell us that Dr. Atkins in Boston was like "Mr IL2", so it made us feel better about the decision to go up there on Tuesday.
The pace around here has slowed a little, mainly because you can't call doctors' offices on the weekends!! So we're just waiting for Monday to come when we start the hectic schedule of appointments next week.
Thanks so much to all of you who have done research or given us connections to others who have gone through this same ordeal. We're in the process of contacting some of these people and hope to find out more about treatments of the disease and their experiences.
Thanks, too, for all of the calls and cards. I'm overwhelmed by everyone's support and love and prayers.

Love ya all!!! Linda

The Second Update--Sept 20, 07

Family and friends,

Phone calls and research have been going fast and furious lately, so we thought we’d give you an update of how things are going so far. We have an appointment with the breast surgeon tomorrow for a follow-up mammogram and with an Oncologist at UC on Friday. Next Wednesday, we have an appointment with a urological oncologist who prescribes IL-2 treatments at Christ Hospital. There’s a lot of fact-finding to do. If any of you know someone going through this same thing or have additional information on treatments (in the U.S. and abroad) please feel free to share. In the meantime, Linda continues to feel well. She even played a full set of tennis today! Thanks for your on-going support and prayers.

Love,
Jim, Linda, Tony, and Andrea

The First Update--Sept 17, 07

Hi everyone. This is our first update on Linda’s status. For those of you who don’t know, we found out last week through follow-up testing that Linda’s renal cell carcinoma had spread to her lungs and renal cavity (space from which her kidney was removed). The spots on her lungs are numerous and mostly small. Due to the kidney’s impurity-filtering function, renal cancer cells do not respond to chemotherapy. There are two relatively new treatment options for this type of cancer. One involves medication that can limit the growth or reduce the size of the lesions in the lungs. Another type of treatment called rIL-2 is more intensive and has a small chance of having a positive affect but also a small chance (5%) of curing the disease. We are exploring these two options with several doctors and are researching whether other types of treatment may exist.
Today we found out the results of the brain MRI. The MRI was clear—there were no visible tumors on the brain! This came as quite a relief, as it means that we can proceed with treatment on the lungs rather than with radiation on the brain. Dr. Schroeder, the only Oncologist we’ve been able to see so far, will call his contacts at the Cleveland Clinic tonight or tomorrow, and see if they have any additional recommendations.
Thanks to all of you for keeping us in your thoughts and prayers. We hope to have more positive news as time progresses and we will keep all of you updated.
Love,
Jim, Linda, Tony, and Andrea