A Prayer Service

Hi Everyone, Jim here.
I've spoken with Gina Helms of Badin High School (where Linda taught). She says there are a large group of students who were away at school during Linda's funeral, and they asked her to organize a prayer service next week when they are back in town. Gina told me that it would last about an hour, and that there's no reason to limit attendance to just students, so I just wanted to let everyone know about it in case they'd like to attend.
The Details---
Location: Badin High School, 571 new London Rd., Hamilton, OH 45013
Date: Tuesday, Dec. 23rd
Time: 7:00pm

fyi, I'm planning just a few more posts after this, and then wrapping up the blog...

Eulogies

Hi everybody - Tony and Andrea here, with a long post. We're including the eulogies we gave at the funeral mass for those of you who were unable to attend. We hope our words help you to recall mom's spirit and some fond memories.

We also want everyone to know that dad will be posting later with copies of the photo collages from the visitation.

Tony's eulogy:

Any of you who knew my mom even remotely knew about her purity of heart. That might make you think of all kinds of examples, but for me, it’s this one: If you were fairly close to her, like a family member or close friend, and say, you were sitting together or even standing together, and you moved in to where you were both touching, she did this thing where she would just kind of melt. If you look again at a lot of your pictures of her with another person, you can just see that in her whole body language.

Many of you know how special that felt, but when you combine that with the tenderness of a mother’s love, well, the rest of you can only imagine. Then again, I bet her students know exactly what I’m talking about.

There was actually a time not so long ago when motherhood was one of the furthest things from her mind. At the age of 23 she found out, quite overwhelmingly, that she was pregnant with me just four or five months into her marriage to a husband who was still in school. Two years later, she was even more overwhelmed to learn she was pregnant again, this time with a child in the house who wasn’t yet a toddler, and a husband who was still in school.

But in over thirty years, not a day went by when Andrea and I didn’t feel that we weren’t exactly what she wanted all along.

And of course today we still feel that. But on top of that, it’s been such a blessing for us, and such a powerful experience, to be able to talk to people who knew her outside of our own family and look at her bigger legacy. When you step back, you begin to see these patterns in her life story. She was an educator, but beyond that she was a mentor and a guide to so many of her students. She had amazing friendships, and she kept up with them. And then over the decades, those bonds just grew and grew, and drew in more and more people, and she was always making this web of connections between her old friends, new friends, students and family. And then she would go the next step and use those connections in projects for outreach to people in need, reaching out to even more people and making even more bonds.

My mom kept a printed, framed proverb on the dresser in my old bedroom that says, “Keep a green tree in your heart and a singing bird will come,” which I guess is another way of saying, keep an open heart and you’ll get a wonderful reward. I think her biggest influence on people was just that – her open heart. And I know that of course it came naturally for her, but I also witnessed her working on it every day. However, that’s not what impresses me the most. What impresses me the most is that she regarded each of us as the reward she received for keeping her heart as open and as vibrant as she did.

It doesn’t quite end there. You also could tell she was still looking for a little something more. She went into the Kairos student retreats and into her volunteer work always hoping to learn something more about the really big questions, like Why are we here, and What can we possibly do about all the suffering in the world, and How do we work our religious traditions into our everyday life? And while I think the relationships in her life actually reached a certain kind of perfection, her spiritual journey was something that never ended. It was a journey where she saw more in front of her than she did behind her. And so I’m sure she would be so happy, and relieved, to know that those of us here are going to pick up right where she left off. Especially her nieces, nephews, grandchild, and students. Although it turns out that all of us were really her students.

Andrea's eulogy:

Of the many, many things my mom taught me over the years, two stick out. One was to always bring a book to read when I go to the hairdresser, in case I have to wait. Mom couldn’t stand wasting time. The other was to always be positive. Which she taught by example more than anything. When we first learned that her cancer had metastasized in September last year, we all were so scared and devastated. Everyone was afraid to ask the question, how long did she have to live. Finally, she asked my dad if he knew. He looked at her with tears welling in his eyes and said, “about half the people with this cancer live a year”. And she said, “A whole year!?” She couldn’t believe the luck. She had a whole year to enjoy the beauties of life.

As my mom taught me to do, I want to reflect on the positive side of her illness. While it finally took her away from us, it first brought her to us all on a much deeper level. We all got to experience what strength, friendship, and love my mom was really capable of. When she had such bad symptoms that would have kept many of us in bed, she got up and showered, and somehow found the strength to attend neighborhood parties, dance at weddings, tutor a neighbor’s son in math, make her unborn grandson a blanket, go to the store and pick out a sweater for her niece’s birthday present, make brownies for her visiting children, and fly to Wilmington 4 times to visit her grandson. Even if it was just doing a load of laundry or the dishes, my mom did as much as she could possibly do every day, and she never once complained. I am in awe of her strength and it will inspire me for the rest of my life.

In the past year, we also got to experience, particularly through her blog, what real love and friendship are all about. Every one who met her became her close friend. She attracted people to her because she was deeply interested in everyone she met. She made everyone feel special. When we met to plan this mass on Monday, Father Greg mentioned that he felt that he and my mom were soul mates. I feel the same way. I wonder how many other people feel that way. And I think that while we all felt this special connection with my mom, none of us knew how many other people out there did, too, until this past year. The outpouring of support for her has been overwhelming. A lifetime of kindness to all of you was repaid to her during her most difficult time.

I have also been astounded by the students who graduated five and six years ago and stayed in contact with and supported my mom as close friends. So many of them said that she touched their lives in and out of the classroom. And many of them who went on to become teachers themselves have said that she is their inspiration. She has certainly touched thousands of lives through teaching.

And so, the most appropriate tribute that we can all pay to my mom is to learn from her example of how to lead a generous life filled with deep friendships, and there is no telling how many more thousands of lives she can better with her love. Smile at people you meet on the street. Don’t talk bad about people behind their backs. Look at the bright side. Do an act of charity this Christmas. Throw parties just for the heck of it. Love your friends and family with boundless, unconditional love. One day, if you’re lucky, it will all be paid back to you.


Finally, I would like to say a word of thanks to everyone who has been a part of my mom’s life. My parents’ neighbors have been tremendous, bringing food and organizing get-togethers. You’ll never know how much the parties meant to my mom.

To everyone who sent a card, gift, flowers, and food to my mom, she gained strength from each and every small and large kindness, including blog comments. Thank you.

All of my mom’s friends have been so generous and helpful in planning for my mom’s memorial, especially Sue Niehaus, Pam Roorbach, Schwabbie, Patti Haumesser, Sue Burns, and Susan and Jay Jackson. We could not have done it without you.

Dad, thank you for sharing mom with us. You did everything you could to give her the best quality of life possible, to see that she lived to see her grandson and saw him so many times, you put your life on hold, you were caregiver, doctor, nurse, husband, and friend. You did all of this without a second thought, without once complaining. We are all indebted to you.

Mom, I miss you. You were so much more than a mother to me; you were a best friend. I will miss talking to you every day and asking your advice, going shopping, watching tennis, walking on the beach, playing SET, making cookies, and so much more. I will always love you. Thank you, mom, for bringing all of us together.

More Remembrances

Andrea asked me to post a few more talks from Tuesday night. I hope you're not tired of watching these yet--I've watched them several times myself. The first is from Linda's "Kairos buddy" and fellow Badin teacher Sue Niehaus. The second is from our friends from Montreal, JD, Greg and Berta, who flew down to come to the funeral. We know them because the company I work for used to be part of their company---almost five years ago. Just another testament to how quickly Linda made friends, and how deep those friendships were. I still have to post the eulogies from Tony and Andrea, and I plan to put up the collages we showed at the visitation as well.
Luv ya, Jim

Remembrances

It's Wednesday night and Tony, Beth, Andrea, Chris, Eli and I have said goodbye to the last guests from Linda's Mass today. It was a wonderful ceremony that we hope Linda was happy with. Sometime later, I hope to post Tony and Andrea's eulogies, but that will have to wait for a while.

Last night at the visitation, over 500 people stopped by to say goodbye and tell us how Linda affected their lives in one way or another. While it was exhausting to say the least, it was gratifying to me to see all of her friends in one place and to finally put faces to all the names of students I had heard Linda talk about over the years.

As promised, during the last hour Tuesday night we met in the worship area and swapped stories about Linda. Some were funny, some were poignant but all were Linda. We recorded the whole thing, and above is one of the many memories that were shared.

So now it's your turn. If you weren't able to attend, or didn't get a chance to speak, we invite you now to post your favorite memory of Linda with the rest of us in the comments section. we'd love to hear from all of you.

Luv ya,

Jim

Remembering Linda

We invite all of you to join us in celebrating Linda’s life. A visitation will be held from 5-9 pm on Tuesday, December 2 at St. John the Evangelist Church, 9080 Cincinnati-Dayton Road, West Chester. From 8-9 pm, a podium will be available to give everyone an opportunity to share favorite stories about Linda.

We will also have a large display of our favorite pictures of Linda at the visitation. We invite anyone attending to bring a favorite picture of Linda. A blank poster board will be available to display your pictures. (If you would like your pictures returned, please mark them clearly.)

A Mass of Christian Burial will be held at 9:30 am on Wednesday, December 3, also at St. John the Evangelist Church.

Memorial donations may be directed to the Linda J. Wimmers Scholarship Fund at Badin High School (http://www.badinhs.org/index.asp) or to the Karama Connection (http://www.karamaconnection.org/).

Journey's End

Thank you for following us on this long, tender journey. Surrounded by love and prayers, Linda ended her battle with cancer at 4:15 AM this morning. She was courageous, generous, and beautiful until the end. We thank you all so much for your support of her and of us throughout the past year and a half, for your prayers, and hugs. Words cannot express how much she will be missed, but she made the world a better place and we will take comfort in knowing that she made all of us better, too. We also take comfort knowing that she has gone to her richly deserved reward and is once again the life of the party.

In spite of all the pain we feel immensely grateful to be able to share in all the deep friendships that Linda spent her life nurturing between all of us. Because of this it's clear to us that we are the lucky ones in this struggle, and though it's hard to take consolation in that thought right now, we have faith that together with you we can look forward to a time not too far out when our wounds begin to heal and her memory will be a great strength and source of warmth in our lives.

We'll post again later with some more information and details of the arrangements, as well as other remembrances of Linda's life. In the meantime we love you all.

Andrea, Tony and Jim

Hospice

Jim again. Linda's condition continued to deteriorate over the weekend. By Monday, she was becoming less responsive and a bit disoriented. She has not left the bedroom since Friday, and only gets out of bed to use the bathroom. There was no way we would be able to get her to the doctor's office for her shot tomorrow, and according to the doctor, the injection was likely to cause fever and chills and other flu-like symptoms as well. I didn't want her to be any more uncomfortable that she already was, so after speaking with her doctor yesterday, I made the difficult decision to discontinue treatment and call Hospice. He felt that her condition is being caused by disease progression and was irreversible at this point.
Linda is not in any pain, not taking any pain medication, seems to sleep comfortably at night and rests comfortably but fitfully during the day. There is an army of neighbors standing by for anything she or I need. Tony arrived last night, and Andrea, Chris and Eli are expected any minute. So please don't worry, we are doing as well as can be expected for now.
In fact, Andrea and the gang just got in, so I have to go. Linda most likely won't be writing the posts from here on out, but I read all the comments to her as they arrive, and she receives strength and comfort from each and every message. We'll keep you posted, as they say.
Luv ya,
Jim

More bad news

I'm sorry to have to share this news with everyone, but things have not gone well since the last post. Linda is sleeping much, much more than usual and has had to start using pain medication on a regular basis. We saw the doctor on Friday and he told us that the most recent CT scan from 14 Nov showed the cancer was spreading again. Apparently the scan that was done on Oct 28th didn't show the new sites because it was done without contrast. He said it was clear that the Nexavar had stopped working.
His only recommendation was to try yet another drug (Avastin) that is used for other types of cancer but has had some success in clinical trials. There are more IVs involved, as well as other injections, so it will take some time for it to work, if it works at all. And time is not something that Linda has right now. Linda has bounced backed before after the other medications have stopped working, but she has never been this sick. She has trouble getting out of bed now, and getting to the doctor's has been even more difficult and painful for her. We will continue to hope, but we also know that we have to be realistic.
The kids will be here for Thanksgiving, and we are looking forward to spending the weekend together. We'll just have to wait and see what happens after that.
Luv ya,
Jim

Technical Problems

Apparently, some people have not been getting their email notifications of the new postings. If you never got one before, that's because I didn't have your email address. (Don't post it in the comments!) If you used to get them, it appears some people stopped getting them around October 3rd. Hopefully the problem is fixed now. Check the blog directly if you want to see the posts you might have missed. www.advantagelinda.blogspot.com

Jim

Not a Good Week

I swear, it seems as if the minute I mention good news on this blog, things go to hell in a hand cart. After last Monday's post when everything looked stable, Linda started getting abdominal pains that night. She didn't get much rest, so we graduated from Tylenol to some more heavy duty pain medication, which let her sleep most of the day.

Wednesday, things seem to be back to normal, but then Wednesday night the pains returned and got really, really bad. I spoke to the doctor Thursday morning and he recommended a higher pain medication dose that made it tolerable, and we went to see him Friday afternoon. Needless to say, traveling to the doctor's office was no fun for Linda. After getting a Demerol IV in his office, he sent us down to the emergency room at Christ hospital for yet another CT scan, as he was concerned that there were some liver problems, based on the location of the pain.

So our trip to the doctor ended up being another long day, as we didn't get home until 8:30 Friday evening. The good news is that they didn't find anything to explain the pain, but then that's the bad news too. Except for the trip to the doctor/ER, Linda had been in bed since Wednesday night. But by Saturday night the pain was gone again, and Linda was insistent on going to her cousin's fundraiser. As some of you may know, Connie Naber helped build a hospice and orphanage for HIV positive children in Tanzania (www.karamaconnection.org), and Linda had been planning on making one of the trips to Africa with Connie, when we found out her cancer had returned. (If you happen to be looking for a worthwhile charity to contribute to, this is a good one.)

So come hell or high water, we were going out Saturday night! As it turned out, it was a great opportunity for us to see all the Naber clan, and we had a great time. As of this Monday morning, Linda's abdominal pain is still there but minimal, and she's had to rest more than usual to recover from the weekend's events. That's all for now.

Thanks for all your concern and support,
Jim

A Quick Update

Lots to tell, just no time to tell it! So I'll have to make this quick.
For those of you keeping score at home, The CT scan results are in, and after some initial confusion at Christ Hospital, the radiologist's conclusion is that there has been no significant changes in the tumors since the August 5th scan. This is really the best that we could have hoped for. It means that Linda has been "progression free" for almost 3 months. Bhandari said he continues to be surprised, as Linda is the only patient in his experience for whom Nexavar has been effective after "progressing" on Sutent.
Unfortunately, there have been some downsides as well. Linda needed a blood transfusion again last Thursday, making it twice in the last three weeks. Foot sores have been very painful, and Linda has been suffering through a severe bout of chronic fatigue. So right now, we're trying to make the best of it, and looking forward to Thanksgiving with the kids.
I'll try to fill in the rest of the details later when I have more time.
TTFN,
Jim

You mean the Bengals actually won a game?

Yes that's right Elliot,for the first time in your life, the Bengals actually won! And you know what? Before you're old and gray, they might even win another one if your lucky! Ok, maybe that's not what he was smiling about. Maybe he was just happy to see his Grandma again. Linda was feeling well enough to travel, so we got down to Wilmington this past weekend. It's not as easy anymore for a lot of reasons, not the least of which is the fact that they eliminated the direct flight, so it's now an 8 hour trip door to door. We also had power problems at the townhome for the second trip in a row, which meant we didn't get to sleep until 2:30 in the morning. The main purpose of the trip was to spend Elliot's first Halloween together. His costume was getting early rave reviews, so we wanted to see it in person. And we weren't disappointed-- he pegged the cuteness meter again.

So it didn't matter much that Elliot had no idea what was going on-- he was warm and comfortable, his parents and grandparents had a great time showing him around the neighborhood and eating the four pieces of candy he collected in his mini-bucket.

The trip back was a marathon as well, since we were delayed out of Wilmington and missed our connection in Atlanta. (Like that's never happened to anyone before.) But we made it back late Monday, in time to vote today and make it to the blood test tomorrow. We will see Bhandari on Friday for the first time in a month. Btw, he had some very sad news of his own. While he was in India visiting with his parents, his father passed away unexpectedly. We talked with the nurses at the Bethesda ATC, and we're still trying to decide the best way to express our condolences and at the same time honor his father. Any suggestions?

Also we are anxious to get the results of the CT scan from last Tuesday. We will certainly hear no later than this Friday, and we'll let you know what we find out.

That's all for now.

Luv ya,

Linda and Jim

An Up and Down October

Oh, my! It's hard to believe that it's been so long since I've written to all of you. For those of you still checking in, I certainly appreciate your patience.

When we left you the last time I was being treated for the infection on my hand and off of the Nexavar for the weekend. Well, that really through me for a loop and for a few days I felt worse than I ever have. Fortunately, once back on the medication I gradually started to feel better and get back to my regular routine. Since then I've had some really good days when I could go out (like Pam's 50th birthday party and a sorority dinner) and some days when I just had to lay on the couch and recoup. This week I was pretty lethargic, but then we found out that my hemoglobin was low again, so I got another pint of blood yesterday. Usually this does the trick, so I'm keeping my fingers crossed. The next set of scans is next Tuesday, but we won't find out the results for a little while after that because Dr. Bahndari is in India right now. We'll keep you posted.

We're looking forward to next weekend when we travel again to see Eli (the cutest baby in the world), Andrea and Chris. Eli's going to be a pea pod on Halloween, so you may see a picture or two of him the next time! Obviously, we're anxious to see how he's grown and changed since the last time we were down there.

I guess that's it for now. As always, thanks a million for all of the continued thoughts and prayers. They keep me going in ways you cannot imagine.

Love ya! Linda

It's a heck of a year to be born a Bengals fan...

Hi Everybody,

Linda, Jim and Tony here. We're having a quiet, restful Sunday afternoon right now, waiting for the Bengal's game to start and get their weekly butt-kicking. Tony came home Thursday night and plans to drive up to Madison tomorrow and then drive back next weekend, when Beth will fly in to meet him here. Last weekend, we had a great visit in Wilmington. We went furniture shopping, and picked out some bedroom furniture so we wouldn't have to live out of suitcases at the town home. Can you believe Linda picked out both a bedroom and a comforter in only two days?

Eli is old enough to go out on some of these trips, and Andrea and Chris are able to go out to dinner with Eli in tow. He's been really well behaved on these trips. At home, his nickname is "Squirmy Worm", because of the way he moves all of his limbs when he's on the floor. He's also growing like a weed, weighing over 11lbs now. Hard to believe he's eleven weeks old already. You may recognize Eli's picture from Andrea and Chris' website. Sorry Andrea, but it was too cute to only use once. Sunday night, we got to have dinner with Jeff Tarvin, who was coming in to stay at one of his many homes in Carolina Beach (inside joke). The Tarvins, you may remember, are our high school and college friends who opened their home to us when we were visiting Beth Israel Hospital in Boston.

Obviously, for us to do all those things, Linda was feeling pretty good and the Nexavar seemed to be working well. We went out twice with Tony Friday and Saturday. Unfortunately, the side effects caught up with her this week. Nexavar causes blisters to form on the hands and feet, and Linda had one on her knuckle that got infected. Her fingertips also get very sore and makes things such as buttoning buttons and zipping zippers very difficult. When we saw Bhandari on Friday, he was very concerned about the infection and started Linda on IV and oral antibiotics right away. He also said to stop taking Nexavar for the weekend. While the infection seems to be clearing up, Linda is already noticing the absence of the cancer fighting drug. She's stuck on the couch feeling a little puny right now. We're looking forward to Monday just to get back to the regular drug regimen

That's all for now. Go Bengals!

Linda, Jim and Tony

Time does fly!

Hello, everyone!
Linda here... I know it's been a while since we've sent an update and I apologize for that. I'll try to catch you up on the last couple of weeks.
On the health front:
I'm now up to the full dose of Nexavar, which is the drug recommended by the doctor that we visited in Columbus. It seems to be working pretty well now. The one downside is that a side effect of the medicine is blisters on the hands and feet. I have experienced that a little bit, but nothing too traumatic so far. And I still have days when my energy level is very low, but, overall, I think I'm doing a little better than I was a few weeks ago. I just never know from day to day how I'm going to feel. But I have been able to go to dinner and get out once in a while, so that really keeps me going.
On the grandma front:
I can hardly believe that Elliot (the cutest baby in all the world!) is going to be 2 months old tomorrow! Fortunately we have a web cam on our computer, so we've been able to "see" him regularly and how much he has grown. Next Wednesday we are going down to visit them and stay for about 5 days. Can't wait to see them and give Eli a big hug once again.
On the weather front:
Last Sunday's wind storm was certainly a tragedy for many people in our area. Fortunately, we just had lots of debris in the yard and only lost power for about 6 hours. We hope all of you are doing OK now. This type of event certainly makes us grateful for all that we have.
I guess that's it for now. I'll try to be better the next time about the updates.
Love you all!
Linda

Who are all these people, and why do they keep taking my picture?

Hi everybody. Well the Nexavar arrived on Wednesday, and Linda is slowly increasing the daily dose; she's up to half the final recommended dose, so it's too soon to tell how effective it will be, and also too soon to tell how severe the side effects will be. In the meantime, Linda has had to deal with more fevers than usual, which tend to make her feel really crappy.



The week's main event of course was the arrival of Elliot, the cutest baby you ever laid eyes on. Oh yeah, Andrea and Chris came too. Good thing, 'cause it's been a while since Jim and Linda took care of a 5 week old baby. Thanks to Andrea's friend Susan (the Cincinnati Susan), who lent us a whole bunch of her baby stuff, and what she didn't have, she went out and bought.


A lot of people stopped by to see THE BABY, and Elliot showed off for them all, eating and sleeping and burping and pooping his heart out. Needless to say, we had a great time. The Talleys left yesterday, and Tony comes back from a trip to Madison tonight, so we have had lots of quality time with the kids.

































These are just a few of the people Elliot entertained. A lot more pictures are on Flickr.com. Search "wimmersfamily" under "People".

Love ya,
Linda and Jim

Hi everybody,

On Friday we drove up to Columbus to consult with a specialist at Ohio State, Dr. Olencki, for a second opinion. At first we thought the trip might be pretty fruitless, but it turned out to be very informative, and hopeful. Dr. Olencki had a different opinion about one of the options we weren’t considering before, involving a drug called Nexavar. A lot of oncologists differ about whether it’s effective in cases like these, but he felt very strongly that it was worth a chance. However, we’ll have to consult with Dr. Bhandari to coordinate a course of treatment. We’ll keep you updated on that.

Tony and Beth came home this weekend and got a chance to hang out at the annual block party with us, and Andrea and Chris are coming up with Elliot on Monday!

Thanks, and we love you,

Linda, Jim and Tony

Not great news

It's been a while since the last post because we've been wondering how to put this---. Linda's oncologist told us back on the 8th that after only 3 months on Torisel that the tumors have started growing again. That day he told us there weren't many options left and suggested Linda's quality of life might be better if we stopped treatment altogether.

Since that conversation he consulted with Dr. Atkins in Boston, who made several other suggestions, including upping the Torisel dose by 50% (which we did last week), and restarting the Sutent (which we will do starting tomorrow). We also have an appointment to visit the OSU Comprehensive Care Center in Columbus this Friday, and we're looking into a clinical trial for a new medication with a group here in Cincinnati.

Meanwhile Linda has had to rest much more than previously. Also her strength has decreased due to the loss of muscle mass caused by the cancer.

None of this has prevented us from getting back down to Wilmington to visit Elliot, Andrea and Chris, where we are right now. Elliot has changed so much in just two weeks, much more alert and looking around at everyone and everything in the room. When he gets fussy, Chris will lay him on the floor and play classical guitar music, which he seems to enjoy.

Also, we recognized during our last visit that Linda would not be able to climb the steps to our third floor condo much longer, so we found a 1 story townhome in the same Magnolia Greens subdivision as the condo. It was unfurnished, so we spent the week before this trip getting enough furniture in place for us to spend a few days. As it turns out, all we really needed was a bed, a TV and a comfortable sofa. Andrea's friend Susan Wood helped by making sure the house had all the essentials such as towels, sheets, dishes, etc. Thanks a heap, Susan! You did a great job.

Love, Jim & Linda

Lots has Happened....

Jim here,

Ok, I know it's been a long time since the last post, but we've been busy. Chris, Andrea and Elliot came home Sunday a week ago, and we spent the next ten days shuttling between the condo, Andrea and Chris' place and various grocery and department stores getting supplies. So we got to see Elliot every day, and the pictures sum up how the days went. Elliot started looking around at things by his second week, and both he and Andrea started to get the hang of the breast feeding thing. So while it was hard to leave on Wednesday, it helped to know everybody was doing well.

Wednesday and Thursday were hard for Linda, so it wasn't a surprise that her blood test Thursday indicated a need for another blood transfusion. Between that and the Torisel treatment, it looked like Friday would be a long day. As it turned out we had no idea how long. Just as they began the saline prep, Linda lost all feeling and strength on her right side (arm and leg). The doctor immediately sent us to the emergency room for "stroke like symptoms" (on the other side of Bethesda North) and ordered a CT scan of Linda's brain. Even before we got to the emergency room, Linda's symptoms started to subside. Eventually she got the CT scan, and fortunately there was no evidence of a tumor or bleeding. The doctor said she likely had a TIA, or Transient Ischemic Attack (a mini stroke), but he couldn't rule out severe anemia or any one of the other blood imbalances Linda has been experiencing. She eventually did get the blood transfusion, but we left the emergency room at 6pm without the Torisel treatment. Linda has been resting comfortably tonight, and if she feels well enough on Monday, we'll go back for Torisel then. In the meantime we intend to have a very laid back weekend, sorting through all the pictures and video of Elliot...

Later,

Jim

The Pictures

And now, as promised, BABY PICTURES!!! Elliot is approximately 4hrs old.

Elliot James Talley

Elliot arrived at approximately 3:35 yesterday afternoon. Our flight was delayed by a faulty a/c unit on the plane, and we got the news while sitting on the tarmac in Cincinnati as they tried to fix it. We finally arrived in Wilmington and after an hour wait for our luggage, we arrived at the hospital at 7pm.

We fell in love at first sight. Elliot is such a cute, peaceful baby. 8 pounds, 11 ounces, 21 inches long, with strawberry blond hair. Andrea was tired but resting comfortably after achieving her goal of a completely natural childbirth. Robert and Ann Talley were leaving just as we arrived, with big smiles on their faces. Chris was the doting new father, tending to Andrea's and Elliot's every need. Less than five minutes after we arrived, Linda was holding her new grandson. Unfortunately, Elliot slept the whole 90 minutes we were there, and we left around 8:30pm to let Andrea get some well deserved rest.

We'll have pictures later today, but if you can't wait, click on the link to Andrea and Chris' Baby blog on the right. Also, uncle Tony arrives this afternoon. We'll write more later, but we have to leave for the hospital now.

Luv ya, Linda and Jim

It's time!

Hi everyone, Jim here. I'm sitting in the doctor's office this morning as Linda is getting her Torisel treatment. We got a call from Andrea this morning around 5am, and she's gone into labor. We always figured this is the one day we would have trouble with, since Linda couldn't afford to miss a treatment. Any other day and we could charter a plane and get there in a few hours. Our commercial flight out is at 3pm this afternoon (we plan to leave for the airport right after the treatment), and assuming Comair is on time, we'll get there around 5pm. I doubt (and hope) that Andrea isn't in labor all that time, so we'll probably miss the arrival by a few hours. Linda's is a little disappointed by all this, but I'm sure that will change once we get there.

In the meantime, Linda has been having a rough week. Last week's blood test showed low hemoglobin again, so she ended up getting another blood transfusion this Wednesday. That and trouble sleeping has kept her tired all the time. Not that any of this would matter, because nothing will keep her off that plane this afternoon.

Hopefully, we will be able to update the blog again tonight. See you then!

It's all good!!!

Hi, all!
Well, we got the written report from the scans last week and I couldn't believe the news. The bone scan showed "no evidence of metastatis to the skeleton". WOW! Then the Cat scan results were even better. Most of the masses in the lungs and the renal cavity have SHRUNK since my last scan in May. And the Torisel that I'm on is not supposed to shrink tumors, just keep them at bay. So, needless to say, Jim and I are quite happy and looking forward to a lot more time together and with our new grandchild--when he comes.
I can't thank you all enough for all your prayers and support. I just know that that is what is getting me through all of this. I am so blessed!
Love you all!
Linda

no news yet!

Happy July 4th weekend!
We thought we would have some news for you on Thursday or Friday about the tests I had done on Wednesday. It was an all-day outing at Christ Hospital for a bone scan and a CAT scan of my abdomen. We were hoping to get some results from my oncologist on Thursday afternoon, but, unfortunately, his son dislocated his collar bone playing tennis and had to be taken to the emergecy room. Now we're hoping to hear something on Monday. We'll let you know ASAP.

All is well with Andrea and baby. We're going down to Wilmington on the 18th for "baby watch" and staying until the 30th. Hope this little guy cooperates with those dates! ONLY 2 MORE WEEKS!!!

Hope you're all having a great weekend.
Love ya!
Linda

Just Checking In

Hi Everybody,

Jim this time. Linda's condition is so stable that it's hard to provide any kind of update other than "Things are the same." Linda's getting around so well that she's started driving around a little bit by herself, and consequently I ended up going to work every day last week. So yes, things are going well for now and Linda is taking advantage of the new medication every chance she gets.

I thought I would take the opportunity to post some of the pictures from the birthday party:

Sorry about the formatting, believe me, it's harder than you think. Thanks to Bob and Heather for all the great pictures.

So the next big event will be a CT and bone Scan, on or about July 1st. We'll see what that brings.

One last thing---Today Linda and I celebrated our 35th wedding anniversary. If for no other reason, Linda deserves canonization for putting up with me for all these years.

Later,

Jim

won't be long!

Hi!
I know it's been a while since I wrote to everyone, but there really isn't any new news on the medical front. My doctor continues to be pretty amazed that I'm doing so well, so we're continuing with the Torisel as long as we can. On the weekends I get to take a little more of the steroid medication and that helps my energy level a lot.
Of course our attention right now is focused on Andrea and the new baby. She is due on July 20th, so we're trying to figure out when we should go down there, how long to stay, etc. If she goes early, I'm not sure what the plan will be! Another consideration is that we have to arrange for me to get my chemotherapy treatment while I'm down there. Unfortunately, I can't miss even one week's treatment.
So the summer is going very well for me. I feel very fortunate to be feeling so well at this most exciting time in our lives. All of those prayers must really be doing the trick! Thank you all.

Love ya! Linda

more good news

I guess it has been a while since I've written to all of you....but I do have an excuse! We went on Tuesday to have my follow-up brain MRI done and we were lucky enough to hear the preliminary report from the doctor right away. It was all good news. The original tumor has been shrunk to the size of a pin head (follow the arrow on the picture) and, just as important, there are no new sights or tumors. We were afraid to pass on this news to everyone right away because we wanted to wait for the final report from the radiologist, which we finally got yesterday. So the radiation seems to have worked and the brain tumor is no longer a worry--at least for now.

I just have to go back every 3 months for more scans. Needless to say, we were quite relieved.

I continue to do quite well on Torisel. I still get low-grade fevers about 3 or 4 times a week, but usually a few Tylenol will do the trick. My energy level is so much higher than when I was on Sutent and I've been doing some "normal" things once again. Jim even went to work two days in a row while Andrea has been here this weekend. Let's hope this all continues for a long time... at least until the end of July when the baby comes!

Thanks for your continued support and prayers.

Love ya!

Linda

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

short update

Hi, all!
There isn't a whole lot to tell this time, so I'll make it short and give more info over the weekend.
The Sutent was affecting my protein levels in my urine, so I had to stop it for a week. I go back tomorrow for more blood tests to see if I can go back on the medication on Friday. In the meantime, I've had some pain in my hip, so I had an MRI today on that and this afternoon I 'm scheduled for a bone scan. We hope to find out the results by Friday.
On a happy front, Andrea and Chris come home today and then Tony and Beth on Friday. It's my niece, Eleanor's, wedding on Saturday and we're all super excited about it. Should be a fun weekend with family and friends.
Until next time......Love ya!! Linda

All went well!!!!

To all my wonderful family and friends:
Well, it's over and everything with the procedure went just perfectly, according to the technicians who were working with me. The mask did fit really tightly and at first I thought that I'd have trouble with that, but Idecided ahead of time how I was going to deal with it. All during the procedure I said prayers of thanks for the many people who are blessings in my life and how lucky I was to have their support at this time. I was not alone in that room. All of you were with me, and it helped immensely to know that. When the beams were going, I was thinking, "Kill that cancer!!" , but then I always got back to prayers of thanksgiving.
So thanks for helping me get through. It's going to be nice to have a few days of "no worries".
Love ya! Linda

We made it!

Well, we didn't have the direct flight that we thought we would. We had to make a stop in Myrtle Beach for refueling while the Thunderbirds finished practicing for the air show in Wilmington. But when we got here, the skies were sunny and it was wonderful to be back in Wilmington again.

We had three days of enjoying Andrea and Chris' company, relaxing, going to the beach, eating out, and generally feeling like we were on vacation. Our condo is still in great shape and we thoroughly enjoyed getting to use it again after a year and a half away. The two flights of stairs were a little challenging, but we minimized the number of trips so it wasn't too bad. We had a lot of good food, good weather, and good company. We even got to have lunch with Chris' parents overlooking the ocean.

We hate to leave, but we have to catch the 5:00 flight tonight and be ready for the stereotactic radiation surgery tomorrow morning. It's hard to believe that at this time tomorrow it will be over. Fortunately this trip has helped to relax me and keep my mind off the upcoming procedure. We'll try to write another update tomorrow to let you know how the procedure goes.

Could it get any busier?

It's Monday morning, and we are sitting at home after Tony and Beth's visit this weekend. Last week was a blur of new information and appointments. Tuesday morning we met with another Radiation Oncologist at University Pointe, who explained the Stereotactic Radiation procedure to us. This is the procedure that hopefully will kill the brain tumor in one treatment rather than 10 or more whole brain radiation treatments. In the afternoon we met with our regular oncologist, Dr. Bhandari. Since the tumors were growing again, he is concerned that Sutent might be losing its effectiveness already. He had talked to us last week on the phone about starting another form of treatment (Torisel), and we went to the appointment fully expecting to start on that. But since last week, Bhandari had talked on the phone with Dr. Atkins, the doctor whom we saw in Boston for the IL-2 treatments, who has treated a lot more cases of kidney cancer. He told Bhandari that his experience was that when Sutent becomes ineffective, the other treatments tend not to be as effective either. But he has had success in combining Sutent with another drug (Gemzar), which seems to help Sutent regain its effectiveness. The treatment is so new that Bhandari had not heard of it before, because they had not yet published the results. An hour later, Linda was getting an intravenous drip of Gemzar, which she will now get every week, in addition to the Sutent. Fortunately there were no additional side effects from this teatment, and Linda's energy level has been fairly high this past week. Bhandari said he will order CT scans in a month to see if this is working.

Friday we went back to University Pointe to get the mask made for the brain radiation procedure. They make a molded mask that fits over Linda's head, in order to hold it in the precise position necessary for the radiation procedure. Tomorrow morning we go for more imaging measurements in preparation of the procedure which is scheduled for next Tuesday the 22nd. Then off to Bhandari's office in the afternoon for another Gemzar treatment.

Fortunately we were able to work around all these appointments and plan a trip to Wilmington to visit Andrea and Chris this weekend. We're crossing our fingers and hoping our energy level stays up so we can make this trip. We have been very lucky to see the kids as often as we have. Tony and Beth came in last Thursday and stayed till Sunday night. Friday afternoon after the appointments, Linda, Tony and Beth went to Sharon Woods and got a chance to enjoy the beautiful spring weather before the it turned cold again. Just having them home provides comfort and support when we need it the most. Thanks for your continued prayers and support, and especially for your comments to the blog.


Love to you all,
Linda and Jim

Another Challlenge to Face

Hi, all! Linda here. I'm sitting here with Andrea who is home again this weekend for a visit. She picked a good weekend to come home because I needed the support.

At the beginning of the week I wasn't feeling well, even after the two units of blood I got last Friday. So Jim called Dr. Bahandari and he ordered another CAT scan and and a brain MRI, which I was able to get on Wednesday. Then Dr. Bahandri called us on Thursdy with the results. The tumors have grown a little and there is a new one in my brain. Fortunately it's only three millimeters. Dr. Bhandari got us an appointment with Dr. Summe, a radiation treatment specialist at Christ, on Friday. He said it could be treated with a single, directed beam, rather than a series of ten whole-brain radiation treatments, which is good news. After a few more consultations and measurements, I should get the treatment the week after next. It sounds scary, but everything should come out okay.

Dr. Summe prescribed some medications that have made me feel a little better over the past two days. I was able to go to our neighbors' house for a Final Four party last night and Jim, Andrea and I were actually the last to leave! Too bad North Carolina didn't win. Andrea and I also went out to breakfast and shopping with my friend Sue this morning and I was finally able to find some clothes that fit me.

Please keep praying for me over the next two weeks. I couldn't do it without your support. Love you all, Linda

Linda got topped off again

We went for another blood transfusion on Friday. This is getting to be a fairly regular occurrence. Every time Linda has gone off Sutent for a week, her temperature starts to rise, indicating the tumors are becoming active, and then her hemoglobin levels begin to fall. The doctor refers to this as "carcinoma induced anemia." It's getting easy to tell when it happens, because Linda's energy level goes to zero. You know she's tired when she can't spend more than a few minutes talking on the phone to the kids. Wednesday she started feeling puny, and on Thursday when we went for the weekly blood test, she went back to bed as soon as we got home. Sure enough, the nurse called later in the day with the results and told us to come back the next day for the transfusion. Since then, she's felt a little better. Oddly enough it doesn't seem to have an immediate effect, but takes a day or two to kick in, so to speak. We had to forgo our daily walk for the last few days, but we'll be out today enjoying the sunshine and seeing if we can make it to the top of the hill again. That's how we know it's a good day. But then come to think of it, every day can be a good day if you just keep a good attitude.

So for now it's back on Sutent. We see the oncologist again next Friday, so we'll let you know what he says. We also saw the cardiologist earlier this week, who told us something we all already know--- Linda has a strong heart.

Thanks for checking in.

Happy Easter!

A blog update with a picture...you guessed it, Andrea is back! She and Chris flew in on Friday and are staying until Monday. Saturday night we celebrated Easter with the Willens and tonight we'll celebrate with the Wimmers/Gronottes. In addition to all the family time, there has been a lot of sports to watch. We never know how we're going to get it all in, but somehow we manage to. Today, it's basketball, tennis, and golf!

As you can see, yesterday we also made our favorite Easter treats...cornflake and marshmallow nests with M&Ms (similar to Rice Crispy treats). Quite a sticky job, but the pay-off is well worth it.

Once again, the bi-weekly visit with Dr. Bhandari brought no major changes. As of Friday, she had been on the 37.5 mg dose of Sutent for 4 weeks, so she is now off it for one week to allow her body to recover. Her weight and lack of appetite are still an issue. Something's wrong when even ice cream doesn't whet Mom's appetite! However, she has managed to maintain her weight for two weeks. Thank goodness for Ensure and protein powder.

We wish everyone a Happy Easter and a good spring break. Thanks for the continued cards and prayers.

A Blizzard Blows Andrea In

Hi, it's Linda this time, with Andrea typing. It's kind of surprising that she made it here. The last five times Andrea has flown to or from Cincinnati, her flights have been delayed or cancelled. But this time, at the end of the biggest snow storm of the year, her flight was somehow on time. She flew in at 6:50 PM Saturday night, and was only 30 minutes late to her cousin Eleanor's bridal shower. It was an interesting drive for all of us to get to the shower in Northern Kentucky, but we all made it and had a good time.

Our trip to the doctor last Friday was thankfully uneventful. He increased the Sutent to 37.5 mg per day and doubled the Marinol because my appetite has not yet increased. I'm trying to eat as much as I can but I'm still losing weight. My doctor will be out of town this Friday, so I get a two-week reprieve.

While Andrea's been home, we've been shopping for baby stuff, watching tennis and playing Set, as usual. We hope to take more walks and maybe do a little more shopping before she leaves tomorrow. These are pictures from our walk today. As you can see, we made it to the top of the street! Andrea's also cooking dinner for us tonight. Hooray! And the highlight of the weekend so far was that I felt the baby move just now. Blessings all around.

Stay warm, spring is just around the corner! Love, Linda

Back on Sutent

Another week of doctor's visits. Tuesday we had a stress test (Just what we need--more stress). Linda was in no shape for a treadmill, so it was a chemically induced stress test. We got the results Friday, and they were the same as the echocardiogram--Linda's heart is fine. Saturday, Sunday and Monday were a bit strange though. Linda was acting a little unusual, and we wonder if the bump on her head wasn't more severe than we first thought. This was compounded by a new prescription for sleep--Lunesta. Now I'm sure this works well for a lot of people, but it gave her the worst three nights of sleep that she's had all year. Anyway she stopped taking it and her loopiness cleared up after that. There have been no real issues with the Sutent either-- there seldom are the first week and besides, the dose is only 25mg, half of what it had been all December and January.

The biggest problem has been weight. Since recovering from the Thoracenteses, and the cancer turning back on after three weeks off of Sutent, Linda's appetite went in the crapper, and she hasn't been able to make herself eat enough to maintain her weight. It's hard to believe she could go from 142 lbs. to 117 lbs in 24 days, but a lot of the extra weight was just fluid retention to begin with. The one medication Dr. Bhandari prescribed previously also causes fluid retention, so we didn't want to go there again. It is a serious enough problem that we talked to him about a feeding tube (one that is inserted into the stomach through the abdomen, not down the throat.) But before resorting to that, he recommended we try one other medication-- Marinol. I don't know how many people have heard of this, but it's the chemical form of, well, uh.... Let's just say Linda is supposed to get the Munchies after taking it. It's also in very small doses, so you don't get the other effects normally associated with it (darn.) It's only been 2 days, but it seems to be working.

We also negotiated with Dr. Bhandari and got him to agree to let Linda go from 25 mg to 37.5 mg of Sutent, so we'll be watching for side effects in the weeks to come. Wish us luck.

Luv ya all,

Jim & Linda

p.s. Check out Tuesday's entry on Andrea and Chris' Baby Blog. It should come as no surprise that it made Linda cry.

Three weeks is one week too many

It's certainly been a week of ups and downs. Linda started her third week off Sutent by walking the length of our street (300 ft uphill) and staying outside for a while to talk to some of the neighbors. She was clearly getting her strength back, but it would only be temporary. By Wednesday, she was starting to lose her appetite again. On the other hand, the mysterious pain in her chest had gone away, so we could eliminate the painkillers from the daily medications. Thursday was the day we saw the cardiologist at Christ Hospital, and he had good news-- Linda's heart is fine. In fact he emphatically said that there was no heart damage, and that should not be a reason for her to stop using Sutent. We also had our weekly blood draw, so it was off to Bethesda North for that. (We've certainly seen a lot of the city lately, at least the parts of it that are near hospitals.) But as the day wore on, it was clear something was wrong---Linda was getting more and more tired. That afternoon we got a call from B-North. The blood test indicated very low Hemoglobin levels again (anemia), and Dr. Bhandari ordered another 4 hr blood transfusion after our appointment the next day (Friday.) Linda slept most of the rest of the day and couldn't eat at all.

So when Friday morning came around, she was so weakened from the low hemoglobin and lack of food that she lost her balance and fell. She was fortunate not to break anything, but she's got a nasty gash on her left temple. The weather was pretty bad Friday morning, but nothing was going to keep us from this blood transfusion now! Our office visit with Bhandari came first, and as always was very interesting. He said he finally spoke to Dr. Atkins in Boston. Atkins told him that he remembered Linda and her unusual case (we had to stop the IL-2 treatment because her cancer was growing so rapidly.) He also indicated that he had seen cases of low albumin and low protein levels that were caused not by Sutent, but by the cancer itself. He also noted that even as aggressive as Linda's cancer is, the pathway it uses to reproduce is clearly the one that Sutent is blocking, given her very positive response of tumor shrinkage. So he strongly urged Bhandari to continue Sutent, at a reduced dosage.

Bhandari also pointed out that Linda's anemia was probably cancer-induced as well, so it was imperative that we begin treatment right away. Apparently three weeks of R&R had also given the cancer time to regroup. However, there was good news. Linda's thyroid levels were back in the normal range, her platelet count was up, and while still low, her blood protein levels are higher than they'd been in a month. So it's back in to the battle once again. Linda is still weak, but it is amazing how much better she looked after the transfusion. But until she gets some strength back, I follow her around whenever she's walking or standing-- she doesn't like that one bit, but she's tolerating me for now.

Jim