Advantage Linda

Now and Forever

2009-11-29T00:03:00.004-05:00

One year ago today, Linda left us. As we look back at all the entries in this blog, it occurred to us that far too much of it is about Linda’s illness. While it was certainly the catalyst that brought all together, years from now this should not be a testament to how she died, but rather to how she lived. No one who knew her was surprised at how bravely she dealt with her illness, but if some stranger should come upon this blog, what you should really understand is that Linda showed us all how to live and enjoy a full life, while committing herself to helping and inspiring everyone around her. She was our friend, our teacher, our mentor and so much more. Each of us is a different and better person because Linda let us into her life. We can never forget her, because she is part of who we are.

Jim, Andrea, Tony (and Linda)

Andrea has posted her own memories of her mother today on her own blog, and would like to share them with you. Just follow this link: http://talleybaby.blogspot.com/2009/11/one-year.html

I Will

2009-11-22T20:22:00.003-05:00

Hi everyone. One week from now will be the one year anniversary of Linda's passing. I've heard lots of people who have lost a loved one say this, but it's true--some days it seems like 10 years, and other days it seems like yesterday. The 9:30 Mass at St. John's next Sunday is being said for Linda, and I know many of her family and friends plan on being there. We will go over to the cemetery afterwards, and bring our flowers and memories with us. If anyone would like to stop by our house on Sunday, Sue Burns has volunteered to serve brunch here, so all you have to bring is your favorite story about Linda. Tony and Beth may be here also. Any time after noon would be a good time to meet us back at the house. We would love to see you.

Andrea and I are working on something special for the blog post next Sunday. In the meantime, the picture here is one of my favorites, taken on our second trip to Hawaii outside of a restaurant on Maui, obviously at sunset. I thought I would also share "our song" with everyone. To no great surprise, it's from the Beatles, and I first sang it to her nearly 40 years ago in the back of Tony Gerhardstein's car. We never realized it would have as much meaning now as ever before. I still sing it to her every week--

I Will

Who knows how long I've loved you
You know I love you still
Will I wait a lonely lifetime
If you want me to I will

For if I ever saw you
I didn't catch your name
But it never really mattered
I will always feel the same

Love you forever, and for ever
Love you with all my heart
Love you whenever we're together
Love you when we're apart

And when at last I find you
Your song will fill the air
Sing it loud so I can hear you
Make it easy to be near you
For the things you do endear you
To me oh, you know I will
I will

A Fitting Tribute

2009-11-11T23:50:00.003-05:00

I went over to Badin High School today and got to see Sue Niehaus, Gina Helms, Dirk Allen, Linda Weathers and Frank Margello. I just dropped by to see the new window to the Campus Ministry Office. The picture doesn't really do the artwork justice, and it really is a work of art. I'll try to get a better picture later, but these will have to do for now. It's just to the right of the main entrance to the school, where every student walks by, every morning. Gina says it's added a lot of pressure to her job now, knowing she has a legacy to live up to every time she walks into her office.
I imagine there will be a lot more posts in the coming weeks approaching the one year anniversary. Not sure what we'll do yet, but I will let you know.
Love ya,
Jim (& Linda)

Starfish

2009-09-07T18:35:00.003-04:00

Hi Everybody,
Jim here. For some reason, I just felt like sharing a few things today. It was about this time last year that we visited a specialist in Columbus, and we switched to the last of the medications, which would only work for a few more months. Even though we would make another trip to Wilmington after that, it seems to mark the beginning of the end for me, and all the memories that come with it.

And even though Linda has been gone for nine months now, I still see her and remember her in so many things that happen each and every day.

I have a friend who says that whenever she finds a dime on the ground, she believes one of her departed loved ones left it and it's a sign that they are near. Last week was the first Trestle drive block party without Linda. While I was out in the driveway, one of the neighbors happened to say that he felt like Linda was still with us. Just then I happened to look down, and there on the concrete was a dime. I know it's silly, but it made me cry anyway.

And the Starfish story keeps coming up over and over again as well. Sue Niehaus told me that the "In-service presenter" who spoke to the Badin faculty on the first day of school (and who knew nothing about Linda) used the Starfish story in his speech, and got a teary-eyed reaction from many of the teachers that surely must have confused him :)

Thanks to so many people who donated to Linda's Scholarship fund, Badin was able to provide assistance to 21 students who otherwise might not have been able to afford the tuition. I've received some of the most heartwarming letters from these students, as well as from their parents, expressing their appreciation that so much good could come from her passing. Some of the students promise to "Pay it forward", and help other students with their tuition after they graduate. The last one that came was from a parent, and said:

I would like to sincerely thank you for the contribution from your wife's Scholarship Fund to our son.
"Our daughter is a senior this year and I remember when she came home from school and shared with me your wife's Starfish story that you spoke to the students about. Our daughter was deeply touched by your speech...
..I feel very blessed to consider our son one of your wife's "starfish".

Then two nights ago, out of the blue I received an email from one of Linda's past students that said:

One morning, sometime after 2 I think, during my freshman year at Notre Dame I discovered Linda's blog. That night I got caught up on all of the previous posts and then went to the grotto to light a candle and say a prayer that God would take care of your family.

Here I am a senior, again it is the wee hours of the morning, and for whatever reason my thoughts turned to Linda.
Maybe it is because I am trying to write an essay about altruism. I am supposed to define altruism and then give some examples in 600 words. To a knowing audience, only two words are needed: Linda Wimmers.
Maybe it is just God's way of telling me to step up and be a better person, and that Linda should be my example.
I am going to walk over to the grotto now and light another candle for your family. Luckily, it is a football weekend and there are thousands of alumni who will visit the grotto tomorrow, light a candle, and say a prayer for all of the candles. That is a lot of prayers.
Just a final thought: I know that there are a lot of starfish Linda never got to, but I want to make sure you know that there are many that she did.

And so I feel better knowing that Linda lives on not just in my memory, but through all the good that she did in her life and all the people who were influenced and inspired by her to be a force for good in their own lives. That's certainly been the case for me... I'm just one of the many starfish she made a difference for, and maybe the luckiest.

Love you all,
Jim (& Linda)

From Sue Niehaus

2009-05-22T08:34:00.001-04:00

Today is May 18th. I am sure we are all thinking about and missing Linda this week as we remember the wonderful birthday party last year. If anyone reads this comment, how about we all submit a Linda moment or memory that celebrates her life.

Here's mine ...It may sound crazy, but I believe it with all my heart!!!!
Every morning I light a candle to welcome Linda's presence. Somedays I feel her more than others, but it's a wonderful way to begin your day. Two weeks ago, I hoped that it would be a day that I truly felt her presence. I was really missing her! When I welcomed her, I got a spontaneous answer in my heart that she was busy and couldn't sit with me because she was meeting Ghandi. It was so Linda, that I knew it was her talking to me. It was a GREAT feeling!!!!!!
Sue Niehaus

Video Contest

2009-02-02T20:50:00.002-05:00

Hey everyone who still happens to be checking this blog. Andrea here. My dad told me about a contest hosted by kidneycancer.org to promote awareness of kidney cancer. So I made this video for the contest, and to keep the memory of my mom alive. The more views it gets, the better chance we have of winning the contest. So view it as often as you please, and forward it to your friends and family if you like. Thanks for your help!

The Posters

2009-01-05T21:27:00.013-05:00

Hi Everybody,

Jim here again. If you read Brittny Dudley's comment on the last post (or if you tried to attend), you know that the prayer service didn't take place on the 23rd. You may recall that was the night of freezing rain, and Badin had to cancel all their events. Since all the ex-Badin students who planned to attend are back at college, Gina Helms is going to try and arrange something in May, (perhaps on Linda's birthday, May 21st).

That night I had intended to bring the collages that Jay Jackson (husband of Andrea's longtime gradeschool and highschool friend, Susan Wenner Jackson) had prepared for Linda's visitation. Since that didn't happen I've decided to post them here. If you click on the picture, you get a fairly high resolution image.

Also, if you'd like the 50 minute video of the Remembrences we recorded at Linda's visitation, send me an email at jwimmers@cinci.rr.com with your address. Let me know if you want a DVD or CD(Windows Media Player format).

I haven't decided how to end the blog yet, for a variety of reasons. First and foremost, it will be hard to say goodbye to everyone who traveled this road with us. Also, I'm not sure what my parting comments would/should be. And finally, Andrea and Sue Niehaus are encouraging me to keep it open at least till the prayer service takes place. So we'll see what happens.

Bye for now,
Luv ya,
Jim

A Prayer Service

2008-12-19T13:12:00.002-05:00

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

2008-12-11T15:42:00.004-05:00

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

2008-12-06T16:30:00.006-05:00

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

2008-12-03T18:26:00.004-05:00

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

2008-11-30T18:49:00.005-05:00

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

2008-11-29T08:58:00.003-05:00

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

2008-11-25T14:10:00.003-05:00

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

2008-11-23T11:08:00.003-05:00

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

2008-11-20T13:34:00.002-05:00

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

2008-11-17T10:27:00.002-05:00

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

2008-11-10T11:19:00.000-05:00

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?

2008-11-04T22:22:00.009-05:00

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

2008-10-24T09:50:00.003-04:00

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...

2008-10-05T14:58:00.002-04:00

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!

2008-09-17T15:55:00.002-04:00

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?

2008-08-30T19:09:00.009-04:00

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

2008-08-24T21:20:00.001-04:00

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

2008-08-17T18:54:00.003-04:00

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....

2008-08-01T21:00:00.004-04:00

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

2008-07-19T17:04:00.003-04:00

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

Elliot James Talley

2008-07-19T09:36:00.004-04:00

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!

2008-07-18T09:31:00.002-04:00

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!!!

2008-07-08T10:53:00.003-04:00

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!

2008-07-05T13:30:00.002-04:00

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

2008-06-22T20:56:00.009-04:00

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!

2008-06-17T16:25:00.002-04:00

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

2008-06-07T16:34:00.003-04:00

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!

2008-05-29T15:56:00.001-04:00

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!

2008-05-26T15:33:00.006-04:00

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!

2008-05-18T16:58:00.002-04:00

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

2008-05-14T22:11:00.003-04:00

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

2008-05-06T16:00:00.003-04:00

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

2008-05-04T15:43:00.002-04:00

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

2008-04-30T10:30:00.002-04:00

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!!!!

2008-04-22T17:54:00.002-04:00

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!

2008-04-21T14:44:00.003-04:00

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?

2008-04-14T09:48:00.005-04:00

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

2008-04-06T16:44:00.002-04:00

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

2008-03-29T12:01:00.003-04:00

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!

2008-03-23T10:45:00.003-04:00

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

2008-03-10T11:32:00.005-04:00

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

2008-03-01T17:23:00.006-05:00

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

2008-02-23T15:54:00.003-05:00

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

Another Mystery

2008-02-16T16:54:00.003-05:00

We had such high hopes for the week last Saturday, but things just didn't work out. Linda had some lingering chest pain after the Thoracentesis procedure last Friday, and we were led to believe that would subside by the next day. Unfortunately, it didn't. In fact, it got worse as the weekend progressed. So while we had a great time with Andrea over the weekend, Linda was on Tylenol or Vicodin most of the time. We called the doctor on Monday morning, and before noon we were back at Besthesda North for more blood tests and an electrocardiogram. The Oncologist was still baffled by the loss of protein through her remaining kidney, so we ended up seeing the Kidney specialist on Thursday. By this time the pain had migrated to her back, and by Friday it was in her abdomen. Dr. Bhandari said it was not likely directly related to tumor growth since it was moving around so much. The chest pain was a real concern to him, as there have recently been reported heart problems associated with Sutent use. More blood tests on Thursday, still more on Friday, as well as an echocardiogram and a chest x-ray. He indicated that he is less and less inclined to stick with Sutent, and is considering a different medication. For now that means another week off treatment. And in addition to seeing an Endocrinologist for the thyroid, a Nephrologist for the kidney, we now have an appointment to see a Cardiologist this Thursday. Hopefully by next Friday Bhandari will have some answers when we see him again.

In the meantime, Tony's in for the weekend! This usually means wood gets cut, fires get made (in the fireplace, that is) and piles of crap we have around the house get sorted and stored. We wish we knew where his neat streak came from. Also, if you'd like to know the sex of Andrea and Chris' baby, check the link on the lower right that says "Andrea and Chris' Baby Blog". (Warning: graphic pictures and nudity are on this site--that is, the ultrasound shows the baby naked.)

Luv ya,

Jim and Linda

What a difference a day makes

2008-02-09T11:52:00.000-05:00

It's Saturday morning, and Linda is resting and recovering from a rather hectic week. The Thursday blood test showed very low hemoglobin levels, so the doctor said it was time for another blood transfusion. We were already scheduled to go to Bethesda North on Friday afternoon for another Thoracentesis, so the transfusion (which takes about 4 hrs) would have to be early in the morning. We went back over Thursday afternoon to get the blood crossmatched to save time Friday morning. In the meantime, Linda's breathing was getting worse and worse, and Thursday night was very hard for her. She wasn't able to walk into the treatment center Friday morning at 9am, so we were moving around Friday in a wheelchair. The transfusion went fine, and we got to the Thoracentesis appointment in the nick of time. Surprisingly, they drained off even more fluid (1275 ml) than they did on Wednesday. She started having some pain right away, which the doctor performing the procedure said was normal, as her lungs would be re-expanding into the area where the fluid was drained off. She was already starting to look better from the transfusion when we left the hospital at 4pm.

Last night though, even though her breathing was improving, the pain in her chest got a lot worse. Some heavy duty painkillers got her through the night, and it all seems to have subsided, at least for now. Even though she's still in bed, she looks, feels and sounds better than she has in weeks. Just in time, since Andrea is coming in later today.

Dr. Bhandari spent a lot of time with us Friday morning during the transfusion, even though we didn't have an appointment scheduled. He said he was checking with the drug manufacturer to see if there have been any other cases of low Albumin levels reported, as this is not listed as one of the side effects. He also put a call in to the doctors in Boston who treat a lot more cases to see if they've seen anything similar. In the meantime he is consulting with a Nephrologist (kidney specialist), since the Albumin is being expelled through her kidney. We'll probably have another appointment next week.

Dr. Bhandari went over the detailed radiologist report from Monday's CT scan with us, and the tumors in Linda's lungs are significantly smaller in volume, averaging around 50% smaller since the last scan only two months ago. He said he has never had a patient whose tumors responded so dramatically to this drug (Sutent), but at the same time he's never had a patient who had so many debilitating side effects either. He told Linda that she's in a war, and this was only the first battle. It's time to pull back and let your wounds from the battle heal, and then plan the next attack.

So we're officially on R&R this week. The sun's out, Andrea's on a plane on her way home, and Linda's even talking about having a glass of wine later-- so I know she must be feeling a little better.

That's all for now,

Jim

Thoracentesis

2008-02-06T20:37:00.000-05:00

Well, the day wasn't a total waste-- at least we learned a new word. Thoracentesis is a procedure that 's performed to remove excess fluid from the area between the lungs and the chest wall. Linda had been having trouble taking deep breaths yesterday, and last night had trouble sleeping because it was getting worse. We called the doctor's office at 10 am this morning, and by 11 they called back to say that the CT scan from Monday indicated Linda had a "Pleural Effusion" (there's another new word!), the clinical term for excess fluid I mentioned earlier. By noon they had an appointment for the outpatient procedure scheduled for 2pm today at Bethesda North. They inserted a needle in Linda's back behind her right lung and within 15 minutes, drained 1.2 liters out (a little more than a quart.) We go back Friday to get the left side done. Theyll run tests on the fluid, but we're expecting that the reason is the low albumin level that I mentioned last Friday, that was causing the fluid build up in her abdomen. All side effects of the Sutent. They call this stuff "Targeted Therapies", but it seems to me it's a little like deer hunting with a sawed-off shotgun--sure you kill the deer (cancer cells), but you do a lot of damage to the rest of the forest in the process.

We go for another blood test tomorrow, then Friday for Thoracentesis on the left side. They don't do it all at once because it could cause a collapsed lung. That means we will have been to a doctor's office or a hospital 4 out 5 days this week. But that's ok, because the doctor called tonight to see how the procedure went, and he told us that besides the fluid issue, the CT scans also indicated the tumors have continued to shrink-- not a lot, but they're being held in check.

Linda's still in a lot of discomfort. The doctor said it could take a while for the lung to re-expand, so we're hoping tomorrow will be a better day. We're anxious to see how the blood tests come out.

Luv ya all,

Jim & Linda

Good news to share!

2008-02-03T12:52:00.000-05:00

For a change we have good news to share that has nothing to do with my medical condition. Andrea told us over Thanksgiving that she and Chris are going to have a baby!!!! But we had to wait until she was 3 months along until we could tell anyone. That was a really hard thing to do! Sorry that it took so long to get it on the blog. Needless to say, we are ecstatic about the news. He/she should be arriving around July 20. (Andrea is SURE that will be the exact date!)
Update on tests: I'm going tomorrow for another CAT scan of my lungs and abdoman. They want to see if everything is OK since I am stopping Sutent for a while. Oh, boy, more Barium to drink!
I'm sorry that I haven't been in touch with many of you lately. I've had a few setbacks that just make me want to sleep. Hopefully, while off of Sutent, things will improve.
Love to all of you,
Linda

Not a Great Start to the Weekend

2008-02-02T15:52:00.000-05:00

We had blood tests and saw the oncologist on Friday morning. Just about everything was out of the normal range. White blood cells, red blood cells, protien, hemoglobin levels were all low. The hypo-thyroidism has gotten progressively worse with each test, in spite of doubling the medication. All of this explains why Linda has gotten progressively more and more tired with each passing day. Platelets, which are needed for clotting, were very low. There's also something called Ablumin that was low, and as a result fluid was leaking out of her circulatory system and residing in her fat cells, not that Linda has a lot of those to begin with. He said all of her recent weight gain was all fluid. And since the fluid wasn't where is was supposed to be, she was actually getting dehydrated.

So you get the picture. While the Sutent continues to keep the cancer in check, the side effects are getting harder and harder to deal with. (The low platelet count is what sent us to the ER in December after the nose bleed wouldn't stop.) Dr. Bhandari said we would have to stop the Sutent for a week or two, primarily because of the low platelet count. That was ok with us--- we were going to suggest it if he didn't. There were a couple of things he was able to do in the treatment center--Hemocrit shot, Saline IV for the dehydration and an Alblumin infusion. Since it was going to take two more hours for the IV, I called Don & Carole to pick Linda up, and I left for work. That turned out to be a bad idea, because on the way out of the treatment center that afternoon, the fatigue finally caught up with her --Linda's knees buckled and she went down in a heap. Catherine, the nurse who was with her actually got underneath Linda and broke her fall. Nevertheless, they didn't want to take any chances, so it was off to the emergency room again. To make a long story somewhat shorter, I got the message at work and caught up with Linda, Don and Carole in the ER. They had been waiting for almost an hour, and Linda was already feeling better (not great, but better.) When we finally saw the ER physician, he checked her for broken bones and sent us home. We left the house that morning at 8:45 for a doctor's visit, and got home at 6:30 that night.

Linda has spent the day trying to catch up on all the rest she missed yesterday. That hasn't exactly been easy, because she's had to deal with another bloody nose, which showed up right on cue. We hope we don't end up in the ER again tonight.

More to come from Linda as soon as she's feeling better.

A Taste of Trestle Drive

2008-01-30T21:05:00.000-05:00

Hi Everybody, Jim again. This thank you is long overdue...
Back in September when we came home from Beth Israel Hospital in Boston, Linda was suffering from the effects of the IL-2 treatment, and I knew it would be a while before that would pass. So on one of my many trips to the pharmacy for medication, I thought I'd better stock up on some frozen pot pies.

However, I had not counted on the extent to which our friends would go to take care of us. Almost immediately, people started showing up with food. Casseroles. Soups. Cookies. Homemade cinnamon rolls! Badin teachers and staff were driving from Hamilton to make sure Linda had enough to eat. Friends from my work were giving me food to take home. The neighbors on the street got really organized in December when things got very hectic. Every other day, a different neighbor would show up at the door, bringing whole meals---I mean, salads, entrees, side dishes and desserts...every other day! And by neighbors, I mean not just the people on the street, but people who used to live on the street as much as five years ago. When people cook something like that, it usually served six. Linda wasn't eating that much, so everything was lasting a minimum of three nights. We actually had to ask them to slow down when we ran out of room in the refridgerator and the freezer. Now I know that most of these people understood that Linda wasn't eating that much, so pretty soon I came to the realization that many of these people were worried about me. Probably for good reason. My mom taught me lots of things in her long lifetime, but one of them wasn't how to cook. I can pour cereal with the best of them, and usually open a can without cutting myself, but that's about it. So left to my own devices, meals would have been a limited number of unimaginative selections. Instead, dinner at our house is now referred to as "A Taste of Trestle Drive". (That's our street name.)

The other night, I was downstairs rooting around in the freezer for the leftover Cordon Bleu, and I came across the pot pies that I bought in September... they're all still there.

I would thank all of you by name, but I'm sure I would leave somebody out. Anyway you know who you are, and the extra five pounds I carry around now are a constant reminder of the endless generosity of all of our friends and relatives. Thanks to all of you from the bottom of my heart.

Jim

This is getting tiring...

2008-01-20T11:27:00.000-05:00

Hello friends and family,

Right now I'm sitting next to Tony and working with him on this latest update. Tony's home for the weekend (yay!) because Beth was in California for an interview and he decided that 15 degrees was better than -5.

I'm sorry that it's been so long since I updated this blog myself, but Jim always does such a good job of explaining the medical side of things. What would I do without him to stay on top of all the details that keep piling up?

I was so happy to get to be able to attend my cousin Jerry's son's wedding last Saturday night and even managed to dance a couple dances with my family. I was pretty wiped out by the end, but I was able to relax all the next day.

This week, though, it's been up and down. Some days I've been extremely weak, but other days I've even had enough energy to go out. I'm still not driving yet, so I'm relying on the generosity of family and friends.

On Thursday I had more tests done, and when we went to get the results from Dr. Bandari he told us that my thyroid levels were even higher than last time, so he's doubling my thyroid medication. Most of my other blood counts were lower than than normal, but not so low that I'd need a blood transfusion yet. Dr. Bandari says that it's the combination of all the medications together, especially with Sutent, that's causing me to be tired and weak. I'm going back in two weeks for more tests, so we should know more then.

Since I haven't written anything on the blog myself since Christmas, I haven't had the opportunity yet to thank the many people who were so thoughtful of me around Christmastime. All the cards and gifts really helped to brighten the holiday season this year. I loved every gift I got - and I'm struggling right now to put it into words, but they had a huge effect on how fully I was able to feel the joy and friendship of the Christmas season.

Fortunately, Tony is the ultimate organizer. Today we're going to go through some of my dad's old pictures (while we watch the games, of course). Tony even brought his cheese-headware for the Packers game. Go Green Bay!

Love ya,

Linda

Mystery Solved

2008-01-06T18:26:00.000-05:00

Hi Everybody, Jim again. I mentioned in the last post that Linda had been feeling very tired lately. As Linda said, her Christmas miracle only lasted till Christmas. I called the oncologist on Thursday, and he suggested coming in that day (a day early) for the blood test. That way when her hemoglobin levels tested low again, she could get a transfusion on Friday and not wait until Monday. Imagine our surprise then when her hemoglobin levels came back normal! There were other tests that would not be available right away, so we made an appointment and came back the next day. The oncologist told us back on the 21st of December that he would start checking for thyriod function on the next blood test, and sure enough, the tests came back indicating that Linda now suffers from hypothyroidism. Google it if you want, but all it means is that the thyroid isn't producing as much of the hormone as it's supposed to. The main symptoms are (guess what!) weakness and fatigue. And of course, it's just another side effect of the Sutent.
The good news is that it's easily treated. Lots of people suffer from hypothyroidism, and in Linda's case it's just medication induced. So we have another pill to take (Synthroid). It may take a week or two for the medication to start making her feel better, but our plan is for it to kick in just in time for her cousin's son's wedding next weekend.
That's all for now. Linda says she hopes she feels well enough to write the next update herself.

Luv ya!

Jim & Linda

Happy New Year's Eve Eve

2007-12-30T13:38:00.000-05:00

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!

2007-12-18T20:19:00.000-05:00

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.

2007-12-13T19:08:00.000-05:00

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....

2007-12-07T19:19:00.000-05:00

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

2007-12-01T16:47:00.000-05:00

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!

2007-11-29T17:39:00.000-05:00

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

2007-11-25T11:25:00.000-05:00

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!

2007-11-20T17:58:00.000-05:00

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!

2007-11-16T20:06:00.000-05:00

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

2007-11-12T17:35:00.000-05:00

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...

2007-11-07T20:05:00.000-05:00

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

2007-11-05T16:50:00.000-05:00

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

2007-11-02T18:33:00.000-04:00

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

2007-10-31T21:14:00.000-04:00

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

2007-10-30T13:27:00.000-04:00

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

2007-10-29T17:22:00.000-04:00

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

2007-10-26T22:43:00.000-04:00

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

2007-10-24T23:02:00.000-04:00

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...

2007-10-22T18:23:00.000-04:00

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

2007-10-21T20:07:00.000-04:00

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

2007-10-20T22:16:00.000-04:00

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

2007-10-19T20:48:00.001-04:00

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

2007-10-18T19:11:00.000-04:00

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

2007-10-17T21:17:00.000-04:00

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

2007-10-16T23:29:00.000-04:00

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!

2007-10-16T13:06:00.001-04:00

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

2007-10-15T20:23:00.000-04:00

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

2007-10-14T16:07:00.000-04:00

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)

2007-10-13T17:47:00.000-04:00

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

2007-10-12T17:09:00.000-04:00

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

2007-10-11T16:47:00.000-04:00

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

2007-10-10T16:27:00.001-04:00

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....

2007-10-09T17:05:00.000-04:00

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!

2007-10-06T10:23:00.000-04:00

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

2007-10-03T18:55:00.000-04:00

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

2007-10-02T18:44:00.000-04:00

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!

2007-09-29T10:34:00.000-04:00

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!

2007-09-27T10:22:00.000-04:00

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

2007-09-26T07:33:00.000-04:00

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...

2007-09-24T18:24:00.000-04:00

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

2007-09-22T14:21:00.001-04:00

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

2007-09-21T16:57:00.000-04:00

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