leisa's update

Final Posting

2008-06-16T18:07:00.000-07:00

Below is Carl Wilkerson"s letter to leisa he read at the funeral. It is a beautiful characterization of her. I'll cherish it always.

Before you read it, please accept my heartfelt thanks for all the cards and emails over the past month. I can't possible answer them all....over 300 of them....but they mean the world to me, Raegan, and Sean. Thanks for taking the time to write, for putting your thoughts into words. I know how hard it is.

Leisa so loved the Church and School and all the people there.

Love to you all,

Jeff

October 19, 2007
5214 Acacia Avenue
Bethesda, MD 20814

Dear leisa:

You have been in our thoughts, prayers, and rosary each day for what seems like a very long time. We ask God to give you great strength and courage. Recently, I read an article in a magazine from the University of Notre Dame that made me think of you. The subject of the article was entitled Why Am I Here, and it introspectively profiled the lives of several people. Each would finish with the phrase “that’s why I’m here, that’s all, that’s enough.”

Most of us in our careers try to give our best and behave honestly. In the end, however, we principally fulfill the mission of our employers. A respectable lot, but essentially a livelihood. In sharp contrast, your life has made a significant, long-term impact on many, many people. You have left an indelible mark on the countless students who acted in your musicals, sang in your choir, learned from your music classes, and followed your leadership as a coach. You spread joy, enriched our spirits, and brought us closer to God with your long tenure as de Chantal’s cantor. Your voice was the guiding core of the adult choir and a special treat to hear on your solos.

Your remarkable personality and talents made a bland world interesting, colorful, fun, and joyful. You were the engine behind a very long string of performing arts, music, and liturgies that made the school, the parish, and the community more humane. You didn’t have to, but you did it anyway, time after time. In de Chantal’s world you created and maintained a friendly, family atmosphere that is not easily replicated. You made de Chantal welcoming, relaxed, warm and inclusive. The student choir you established many years ago is strong and enduring.

In spite of a perpetually overflowing plate of responsibilities, you knew and remembered details about each person, their family and their life. You always made time to patiently listen to worries, stories, joys and aspirations. You did it all gracefully, with energy, enthusiasm and laughter. It had to be exhausting, but you never let it show. Your deep sense of humor and easy smile made life less dreary.

Your life is a rich and unique tapestry woven with a common thread of love. As a spouse, daughter, parent, sibling and friend you have been loyal, supportive, encouraging, and patient. You raised two great children who are making their mark in life. You are a patient foil for Jeff’s rich sense of humor. You are a positive model for many people facing difficult challenges. You continually developed your wonderful talents, and in generously sharing them inspired others to do well. Through you I have learned that each day is a special gift to be experienced and appreciated. You provide a template for a life well-lived.

Maureen, my children, and I are blessed to know you. Thank you for your kindness to Matt, Shane, Julia, Marie, and Tess as they progressed through de Chantal School. You created countless memories to treasure for the rest of our lives. You have been a great friend and colleague to many, many people. Thank you for everything you did for all of us every day. Our lives are richer because of you.

As I draw to a close, I circle back to the Notre Dame article entitled Why Am I Here. I am still trying to figure out why I am here, but I am absolutely certain why you are here. You have been a special gift to help all of us get through life. That’s why you’re here. That’s all. That’s more than enough.

With love and prayers,

Carl and Maureen Wilkerson

The big day

2008-05-22T22:23:00.000-07:00

Below is a copy of my remarks at leisa's grand and wonderful funeral Thursday. Please email me at jeffketchum@yahoo.com if leisa touched your life somehow. I would love to hear about it. The copy below looses quite a bit as words on paper but you'll get a feel for it. It was a glorious day. I loved it and didn't want it to end.

******************************************************************************

I got an email from St. Peter last night. It read, “Your wife is trying to reorganize the angel choir. Please advise.” My reply….”Dear St. Pete: Don’t mess with her if you want to keep your job.”

What the heck was I thinking when I thought I could speak today. Bare with me. I may cry a little but I can so this. You all, on the other hand, may not cry. This morning in the hot tub I was filled with a feeling of peace and joy that I hope lasts at least a few more days.

I am Mrs. Ketchum’s husband and love the designation. I love this place. I’ve always felt welcome here. The church, the school, the people who make St. Janes what it is.... Leisa poured out her heart and sole here. She got back so much more. Oh, and by the way, I am really quite used to sitting alone in church with leisa on the altar..... I know I was never really alone.

She so loved her “school kids” and they too gave so much back. She told me more than once she even appreciated the few horrible monsters because they made the many great ones shine so much more brightly.

And how can you not love a first grader who writes, Dear Mrs. Ketchum, “I’m sorry your dead. You sang great.” Or Mrs. Ketchum. Good luck in heaven”. Dear Mr. Ketchum writes a 3rd grader, I hope you are feeling well. Mrs. Ketchum had the best laugh. She’ll always be watching you!!!. Kids, if you want to honor Mrs. Ketchum,, follow your passion and make it primary in your life. Make your money elsewhere if you’re not lucky enough to be paid for your passion as leisa was.

You all know she loved to sing. I had a bet with her on which David would win American Idol last night. I won.
How she could stand up here to sing at the funeral of a friends’ child or at the funeral of someone she loved, I’ll never know. Actually, As I stand here, maybe I do now know.

We can never thank all of you enough for the support and love heaped on us over the past two years and over the 34 years we’ve been together. To have spent nearly all of every day of leisa’s illness with her was such a gift. Save your pennies so you can do it too if you need to. The rewards are immeasurable. Those who brought communion to leisa, especially Floranne Sirilla, thank you.

I can’t talk about our children or about leisa’s family now. So much to say. I’d melt. They know how leisa and I feel.

One of our good friends wrote a letter to leisa last October she loved so much. The letter put many of my jumbled thoughts into perfect words. Carl Wilkerson wrote the letter and he and his family have been with us the whole way. Our children are of similar age. They studied and played together under us as coaches, parents, and teacher. I asked leisa so many times. Don’t you rejoice in how many lives you’ve touched? Most of us could only hope to touch a life or two along the way. She said not really until Carl’s letter. Carl:

While Carl walks up, Let’s rejoice leisa is with her Dad and that her Mom is still with us to love and enjoy some more. Molly, our dog, is very happy to have her too.

One last thought. Leisa told me every day and every hour at the end she loved me and Raegan and Sean a million. Engineer that I am, I needed to quantify that million so I’d asked her “a million out of how many?” She always answered, “6” or “3” or negative infinity. I like to compare us to puzzle pieces that eventually sit next to each other in a partially finished puzzle, on a card table in the living room., a little hard to figure at first, colorful and each unique, vastly different, perfectly matched.

The music was exceptional. Thank you.

I love you all. Raegan and Sean love you all.

***************************************************

I'll post Carl's letter when I get an electronic copy.

So, I'll play a little golf, work a little, love our kids and love all of you as the days and months progress. Thanks.

Jeff

Services Thursday at 11am

2008-05-19T13:28:00.000-07:00

leisa's funeral will be held Thursday at 11am at St. Jane Frances de Chantal Catholic Church. A reception will follow at the Church. Burial will be at a later date. There will be no viewing or funeral home visitation prior.

The Church is located at:

9525 Old Georgetown Road
Bethesda, Maryland 20814

just inside the beltway

The Pooks Hill Marriott (a.k.a. Bethesda Marriott) is close 1-800-228-9290. They have 58 rooms available as of right now (Monday 4:40).

Come early, stay late. We"ll have a blast.

I mentioned to some of you the funeral may be Friday. Do not come Friday. No one will be there.

Jeff

Leisa is gone

2008-05-18T21:24:00.000-07:00

She died at about 6:30 pm Sunday after a nice visit from her brother Frank and my sister Liz and husband. It was so quick. She simply said she didn't feel well, had some labored breathing for a few minutes and died with Raegan, Sean and I by her side. The suffering is over. We're so glad it was fast.

She touched more lives than most of us could ever dream.

I'll post details as soon as they are set.

Sleep now.

Jeff, Raegan, and Sean

Things are okay

2008-05-14T19:44:00.000-07:00

Leisa is a bit weaker as the weeks pass. She's eating some but not enough. The hospice people are, of course, wonderful. Mentally, some days are better than others.

We live and sleep in the living room now. No more stairs. At last, the room has a purpose . Actually, it has been our music room for decades but most of us don't use our living rooms to their full potential. We do now.

Hoping for warmer weather to at least allow us to squat on the porch.

Raegan and Sean are well as am I.

Please call before visiting. Short visits are best. When leisa closes her eyes and pretends to sleep its time to go.

Thanks,

Jeff

Back home again

2008-05-04T06:35:00.000-07:00

Leisa's vital signs a good, her blood is all fixed up. She remains a bit confused and has trouble putting some thoughts together. We're having a Hospice consult this week.

The doc thinks further treatment is not necessary. We'll keep her as comfortable as possible and surrounded by family and friends. Please come visit but don't expect to stay more than a few minutes. A few other tips; don't ask her how she's feeling...she feels extremely tired and in some pain. Talk to her as you would if you saw her on the street. She hates the "poor, poor leisa" tone of voice and it scares her. Keep it upbeat. We can also do without suggestions for looking into the latest experimental treatments, herbal remedies, and mystic shamans dealing peyote buttons.

One month, two months...who knows. Leisa has spent her illness wanting to know essentially nothing of her disease or prognosis so let's keep it that way. Thanks.

We would be in such trouble without all of you. Thank you.

Jeff

Back to the hospital

2008-05-02T19:20:00.000-07:00

Leisa returned to Suburban Hospital Wednesday by way of the ER. She ended up in the ICU because her blood pressure was very low and reluctant to rise. She remains there tonight. She'll probably remain in the hospital for several days more.

She's very weak. She can't really stand or walk. Things don't look real good but I think she'll bounce back yet again and keep fighting. I'll keep you posted. Need sleep now.

Jeff

Getting weaker

2008-04-11T18:27:00.000-07:00

Second session of new chemotherapy yesterday. Hair not yet falling out. Nausea and extreme fatigue combined with leisa getting generally weaker anyway make this new treatment a barrel of fun.

She can't walk unaided or get out of bed or a chair by herself. None of this is good. We are both wondering why keep up treatment? We'll have to make that tough decision soon.

We feel your prayers and are grateful everyday.

Jeff

New chemotherapy

2008-04-03T14:29:00.000-07:00

Saw the doc today. Disease has progressed in the spine and the liver tumors are slightly bigger.

Leisa started treatment with adriamycin, a long-time breast cancer drug from the 60's with some success in gastrointestinal cancers. Its a long shot and bright red. She will loose her hair in about 3 weeks and have pink wee wee.

Jeff

CT Scan and MRI in an hour

2008-04-01T16:32:00.000-07:00

Beautiful afternoon in the Nation's Capital. 75 and sunny. Did some quality porch time while leisa slept.

Last week the hospital determined that leis has a urinary tract infection. An antibiotic was added to the other 58 drugs she takes. She's feeling better now after the ordeal of drinking barium at 6am and enduring both a CT scan and an MRI of her brain. The confusion she suffered and the shaking hands and weak limbs worry the doc. He wants to see if cancer may have spread to her brain. We'll find out Thursday at noon thirty.

Two years have passed since leis was diagnosed. One year since Molly (our dog) left us. We're ready for something new. Perhaps a house fire or an automobile mishap or maybe a yard fungus.

Our best to everyone.

Jeff

She's home and doing well

2008-03-23T13:40:00.000-07:00

Leisa came home today and is well hydrated and doing fine. CT scan on Tuesday, chemotherapy Wednesday, life goes on.

The Jersey Trip

2008-03-22T19:25:00.001-07:00

We drove to Flemington Friday to see leisa's Mom. By late afternoon on Friday leisa was pretty out of it. Saturday morning at 7 I loaded her into the car and set a new record for 200 miles....2:46. We got home, I called an ambulance, and she is resting comfortably at Suburban Hospital. Hope to bring her home tomorrow (Easter Sunday). A combination of the disease, chemotherapy, and dehydration were the culprits. She's feeling much better tonight. Her poor Mom was freaked but is okay now. I, on the other hand, need several psychiatrists, Ceasar the dog whisperer, and a massage therapist with a Kung-fu grip.

More tomorrow.

Jeff

Not good, not bad.

2008-02-29T18:06:00.000-08:00

Things are pretty stable. Treatment continues. Leisa is very tough. I admire her strength and her ability to look past her horrible situation to enjoy parts of her days.

I found out yesterday, yes, yesterday, that leisa's (and my) insurance ended today. Been scrambling to find coverage. Found the Maryland Health Insurance Plan dreamed up by the Maryland State Legislature a few years ago for situations just like ours. Potentially no break in coverage at a reasonable rate. Part of the qualification is to be sick. Imagine. I drove to Frederick today to drop off our application (to get a date stamp required for instant coverage). Someone is watching out for us. Found they still have Roy Rogers up there. The roast beef was delicious, not to mention the baked beans.

The doc deems the cancer stable at this point so we'll continue the present treatment as long as her body allows. Warm weather would be welcome. February sucks.

Happy birthday Cathy...born in 1952 and only 14 years old today.

Don't forget to root for Gonzaga in the city championship. More importantly, clean your furnace filter, vacuum the coils on your fridge, and change your oil. Oh...and don't waste toilet paper. Protect your teeth if you fall and wear clean underwear in case you're in an accident. Too much TV numbs your brain. Always keep a litter bag in your car....make sure there's nothing in it to identify you when you throw it out the window. And last, but not least, time flies like an arrow, fruit flies like an apple.

Thanks, everyone, for your love and support.

Jeff

Has it realy been two months?

2008-02-05T17:23:00.000-08:00

The last two months have been quiet. Belly draining at home every day is so much better that the weekly trips to the doc or the hospital for major draining. Leisa is so much more comfortable on a daily basis.

Leisa finally was able to have chemotherapy today after over a month. Those pesky platelets just wouldn't multiply. They still aren't up but treatment proceeded anyway. We'll have another scan at the end of the month. Lots a back pain controlled by medication. Very unsteady on her feet. The past two months only one day spent in bed. Not bad.

I work when I can. Raegan and Sean are here often. Leisa's Mom is on the phone several times a day. Can't wait for winter to end. 70 degrees tomorrow should be a good tease.

New treatment options are not very appealing. Pretty serious side effects with no real indication they will succeed. Barfing while her hair falls out is not really what leisa wants. We're thinking now that no treatment might be the best treatment but its a tough call. Leisa's doc is great. We fell no need to second-guess his ideas at this point. We've done all the second-guessing we care to do.

We're closing in on two years of cancer madness. Its amazing what one can get used to (can't get used to the idea that Hillary may be pres.)

Stay healthy.

Jeff

Doing better

2007-12-07T06:18:00.000-08:00

Last Thursday (a week ago) leisa got the permanent catheter installed. After a week of soreness she's doing pretty well. The wrong catheter arrangement was installed that wouldn't allow me to connect the drainage bag at home. We had the good luck to know the surgery tech that helped install it so he came to the house three times to help. After consulting with the manufacturer, the right connection was installed and all is well. I knew, from watching videos online, that the installation was wrong but I gave the docs the benefit of the doubt and just shut up. Yes, indeed, its true. Sometimes they just don't know precisely what they're doing. Glad we like them. Did I mention that the Doc scheduled to do the installation had slugged his daughter's bedroom door and broke his hand? They brought in a guy from Sibley Hospital to do it. Leisa has been very pleased this past week with all the drainage troubles.

The bottom line is no more big fat belly and lots more comfort day-to-day. She actually went to the hair dresser yesterday for a Holiday coiffing.

The cancer seems to be stable with no cancer cells in the drained fluid. The outlook would be much worse with cancer cells in the ascites fluid. Chemotherapy continues.

Looking forward to a good Christmas.

Jeff

And so it goes

2007-11-26T09:54:00.000-08:00

We're trying to get an indwelling catheter installed in leisa's belly so we can drain at home while watching Laverne and Shirley reruns. Much more comfortable and convenient. It was to happen last Friday but her blood pressure and platelet count were too low. Scheduled now for Thursday morning if she can hold out that long. If not, she'll have to be drained, lowering her blood pressure, and precluding the more permanent drain installation for a few days. Catch-22 anyone?

At least Winter is settling in to enhance leisa's temperature challenged system.

Hey, God.....what the %^$%##&. I fell down the stairs this morning and popped my shoulder out.....did a Bruce Willis/ Mel Gibson and popped it back in quickly but its going to hurt soon. Thanks alot.

On a more positive note, the Redskins don't have to play for about a week.

Jeff

Nothing very exciting

2007-11-15T06:41:00.000-08:00

Leisa continues to produce volumes of fluid in her gut. Yesterday was a 7 liter bonanza followed by a chemotherapy session. She's just about had it with the weekly drainings mostly because the several days prior to the draining she is so uncomfortable. By the way, 7 liters is about 2 gallons. It takes about 2 hours to trickle out. It is very exciting to watch a 2 hour trickle out and then a three hour drip in. What better way to spend an Autumn afternoon?

The latest CT scan showed the tumors to be somewhat stable. Stable is good. Twice a day injections at home thin her blood to hopefully help the clots in liver related veins to dissolve.

No travel for Thanksgiving. Feel free to stop by. We need the distraction.

Our best to everyone,

Jeff

Don't read this unless you're at least 21

2007-10-30T06:18:00.000-07:00

Leisa is doing pretty well these days. The last CT scan showed some tumor shrinkage and clear adrenal glands. The cause of her ascites (fluid in the abdomen) was revealed to be two clots in liver-related veins. 6 liters are drained each week. An anti-coagulant injection twice a day should help to alleviate the fluid build up. Chemotherapy continues. Hands and feet still numb. Both of us are going slightly crazy but still maintaining a decent grip.

I continue to get quite a bit of cancer information from many of you. Any and all of it is very much appreciated. Thanks. I run a lot of it by leisa's doctor and several doctor friends. No magic answers yet.

Raegan and Sean are well. Our dog Molly is still dead.

It was so nice to see the Redskins beat the Patriots.

Just kidding about the over 21 directive.

Jeff

Tiger Woods is an alien

2007-09-11T14:17:00.000-07:00

Hi everybody. Lazy-ass blogger is back.

Leisa had a CT scan last week showing that the biggest liver tumor has shrunk a bit but is still a big one. The other smaller tumors are stable. Her liver continues to weep into her gut. She gets about 3 or 4 liters of magic fluid drained off each week. Her back continues to degrade the quality of her days. She has difficulty standing for more than a few minutes.

Tomorrow she starts a new chemotherapy drug- Gemzar (Gemcitabine) to hopefully, as a secondary effect, relieve the fluid problem. It will be given with Avastin that she has been given from the start (insurance still won't pay for it, Genentec supplies it at no cost). Once a week for two weeks then a week off and so on. The week off will probably consist of painful injections of blood boosters.

As we head into Fall, nothing much has changed. Leisa is visibly weaker as the months pass but day-to-day the change is unnoticeable. She still looks pretty healthy.

I am fine and have stopped drinking soda. I lost 93 lbs. the first day.

Tiger's real father is a red plant from distant galaxy RTYU-67558. He was hatched from a pod delivered to earth by my friend Ziggy who travels frequently in space. Once hatched, the government decided we needed a black hero real quick and kidnapped the Woods' and brainwashed them to raise a golfer. Tiger has no sex organs. My friend Ziggy is responsible for the child. He loses tournaments on purpose so no one will suspect his origin. The $10M he is about to win will be sent to RTYU-67558 and used to fund a program to make iPhone replicas so future pod children will be accepted on earth. This is all true. Do not call the authorities.

Our best to all of you. Thanks for all your thoughts and prayers.

Jeff

Gut relief

2007-06-27T12:57:00.000-07:00

The gut letting went well. I recommend it along with Kyphoplasty. About a liter and a half was let...nearly 4 pounds. Leisa remains in the dumps.

Best regards,

Jeff

Back on Chemotherapy

2007-06-27T06:47:00.000-07:00

The lastest CT scan revealed that the main liver tumor enjoyed the chemoembolization drugs and plumped up a bit as did a smaller tumor on an adjacent part of the liver. Leisa started chemotherapy the same day we saw the doc about the CT scan. This time the oxalyplatin will not be administered. That's the drug that made leisa sick and numbed her hands and feet, which are still numb, thank you very much.

Today we go to Suburban hospital to drain leisa's inflated abdomen. Should be quick with instant relief. Then we sit around for several months (I hope) and do chemotherapy.

If you get in touch with leisa, after the initial exchange, try to talk about things other than her health. She will naturally direct the conversation to her latest troubles but give it a shot. She needs to hear about things having nothing to do with her. Thanks.

I have a bunion. So there.

Jeff

Home again

2007-05-19T06:04:00.000-07:00

Leisa is home and resting well. Hasn't eaten anything solid yet. Nausea still a problem. Maybe some solid food today. Slight expected fever remains . Thanks for all your thoughts and prayers.

Chemoembolizaton

2007-05-17T17:31:00.000-07:00

Chemoembolization went well but only time will reveal its true effectiveness. Leisa will stay at least tonight (Thursday) in the hospital. She's pretty nauseous and has significant pain around the liver tumor site. Drugs sort of work. 18-24 hours of pain is the estimate. Hope she can go home tomorrow (Friday).

There is no end to the fun.

Jeff

Chemoembolization

2007-05-14T05:26:00.000-07:00

Leisa's liver tumor will undergo chemoembolization on Thursday @ noon. She'll be at Suburban Hospital maybe two days thereafter. As I mentioned previously, there's some pain expected for a few days and probably the standard chemotherapy sickness for 3-5 days.

Leis is in the "What next?" mode and ain't real happy. Getting this past us and a summer without further treatment should perk her up .

I'll let you know how it goes.

Best regards,

Plimpton

( I've changed my name for lack of anything better to do. Call me "Plimpy" if you want. If your name is Plimpton, I'm sorry. You also need to change our name.)

Summer w/o chemotherapy

2007-05-08T13:52:00.000-07:00

Good news from recent scans and Dr. visit. The tumors have only slightly increased in size. So, after a consult Thursday afternoon, leisa will undergo chemo-embolization as early as next week. A catheter is inserted in the groin and threaded up to the point where the tumor gets its blood supply from the liver. A chemothrapy agent followed by some exotic foam strangles the tumor and cuts off some of the blood supply. It should then shrink. The same procedure may follow in 4 or 5 months. The best part of it is no chemotherapy this summer.

Some pain usually follows for a day or two. The tumor gets a bit cranky after losing its blood supply. It is rather comfortable right now sitting on top of a constant gourmet meal. She might spend a day in the hospital for pain management. After that it should be smooth sailing until the fall.

I'll let you know how it goes.

Jeff

Kyphoplasty and Molly

2007-04-01T18:47:00.000-07:00

On March 26th leisa had kyphoplasty done on her L2 vertebrae. They biopsied the bone as well. No result yet from the biopsy but the Kyphoplasty has really helped her back. Kyphoplasty is accomplished by inserting a biopsy-type needle into the bone followed by a balloon. The ballon is expanded to bring the vertebrae back to its normal height. The balloon is removed and polymethylmethacrylate (superglue) is injected to fill the void. Took 20 minutes and the result of the Kyphoplasty is pretty remarkable. Kyphoplasty is my new favorite word.

Friday we kyphoplastied the doc. Tumors are quite still. CA-19-9 markers haven't increased. Kyhpoplasty is cool. CT scans are scheduled for May 3rd to keep tabs on the tumors but there will be no more Kyphoplasty for now. If we could have another child we would name him or her Kyphoplasty. The next few month will be devoted to getting leisa stronger, made possible by the Kyphoplasty.

On a note far more serious than Kyphoplasty, Molly (our 14 year old yellow lab) left this great earth on Saturday after losing the use of her hind legs and not eating or drinking for a few days. Kyphoplasy would not have helped. We mope around the house recalling great Molly stories. She was a geat dog, probably better than yours and smarter, too. The vet took her out very quietly and comfortably. I was with her and she sends her best to everyone. Leisa is okay with the whole thing. It was time.

I will continue to spread the Kyphoplasty message. Everyone should consider the procedure even if your spine is fine. Just being able to say you had Kyphoplasty done will clearly separate you from everyone else (except leisa....and me because I know all about it). How often do you get the chance to have a balloon in your bone? Kyphoplasty rules. If the ballon is not used, the procedure is called vertebroplasty, not nearly as special.

April 30th is our 30th anniversary. We plan to go somewhere very warm. Any ideas

Happy Easter. I've heard the Easter Bunny will be hopping especially well this year resulting from a successful Kyphoplasty procedure.

Jeff K. (for Kyphoplasty)....I've changed my name.

What do you know, its March already

2007-03-02T13:37:00.000-08:00

Went to see the Doc yesterday. Tumors appear to be resting quietly so it will be at least June before chemotherapy starts again. Leisa has an MRI next week to assess her spine to see if there's anything that can be done to relieve her lower back troubles. Vertebroplasty perhaps......superglue injected into the vertebrae to stabilize the damage done by the tumor.

Leisa is cruising along, no real highs or lows, just waiting for winter to leave. Hands and feet are still numb.

Wow, Sixty degrees today. Hope to see you all on the front porch this spring (not all at once).

The January scans were pretty vague about the various cancer sites other than the liver. I quizzed the Doctor about possible surgery to remove the liver tumor but that is still not indicated. Maybe the MRI will be more definitive.

We are approaching the one year mark the end of this month. I can't begin to describe the fun we've had this past year. Such a wonderful disease. I'm thinking a shaving my head and moving in with Howard K. Stern so I can get on the news every day for a month. I wonder who will get custody of Anna Nicole's breasts....maybe we'll see them on EBay?

Thanks so much for all your thoughts and prayers.

Jeff

Once a month

2007-01-05T08:47:00.000-08:00

Good news from the last scans. Everything is stable. Leisa should get a break of at least 4 months, probably six. The doc used the expression "partial remission"....seems like fluff to me. The bottom line is that the tumors are about half the size from when we started and haven't changed for months. When they get active again, chemotherapy will begin anew. We are hoping for summer, at least. The doc wants to see leisa only once a month for now.

We had a good trip to Cape May for the New Year and then visited leisa's Mom for a day on the way home.

Best wishes for a good New Year to everyone and thanks for all your support.

Jeff

Merry Christmas

2006-12-26T08:23:00.000-08:00

We had a great Chrsitmas dinner with my sister Eleanor and family. They tool off for Williamsburg today to see the parents. Mom (Sally) went to the ER yesterday but was kicked out quickly and sent back home for Christmas. My Dad is so clueless when she's not around.

Leis and I are off to Cape May for the New Year. We return Monday in time for a CT Scan Wednesday and a Dr. meeting Friday to evaluate it. If the news is good (stable tumors) then months of no chemotherapy will follow.

Leisa's return to Mass a few weeks ago was just what the doctor ordered. So many people happy to see her. Certainly brightened our life. The masses were great.

Happy New Year to all. Thanks so much for all the cookies and other gifts, some left anonymously at the front door. Mickey, give me a call when you have a moment.

By the way, leis ate ice cream at dinner yesterday. First cold food since May. Yippee.

Jeff

Deck the halls with boughs of neuropathy

2006-12-15T13:25:00.000-08:00

Here we are about 6 weeks after leisa's last chemotherapy session. Today a bag of rust (iron) was infused to try to bring up her hemoglobin numbers. She's been getting Procrit every week as well to try to restore an energy level suitable for the holidays. Numb feet and hands remain with no real relief yet. Back still a problem.

A CT scan on Jan. 3 will be the key to determining the length of this break. The weekly trips to the Doc make it not feel like much of a break.

Our trip to Philly for Thanksgiving was good. We stopped in on leisa's Mom on the way. We stayed in a hotel about 9 feet from a BEST Buy that opened at 5 am on black Friday. I woke to the sounds of irate drivers suggesting unique maternal relationships, etc. Leisa takes great sleeping drugs so she slept on.

We then drove to Williamsburg to see my folks. All is well there. Hoping for many more years out of them.

Merry Christmas to all. Here's hoping for a great New Year.

Jeff

The Big Break I

2006-11-06T07:32:00.000-08:00

Monday, October 30, was treatment #12 and it was a particularly nasty and vengeful one. The neuropathic side effects are cumulative and have officially accumulated. Leisa's hands and feet are quite numb. She is very unsteady on her feet.

We now get a break of unknown length. One of our chemo-buddies is on her third cycle of 12 treatments. Her first break was 5 months. Wouldn't that be nice. Blood tests at the end of November and a scan in December will help to determine leisa's break. As we speak, the tumors have shrunk about 50%, leisa's back is better but not good yet, her physical therapy continues, and the neuropathy affecting hands and feet may take a month or two to get the &^%$%#$% out of here.

We hope to go to Philadelphia for Thanksgiving. That's up in the air.

I went out last Saturday night for the first time in about 7 months to a gathering of friends I hadn't seen for 35 years. Had a blast learning of all children and diseases people have had since then. It was great to see the people with whom I was naked in Edgemoor's pool some 35 years and about 50 lbs. ago. (No one was naked last Saturday). Hats off to Mark Gilder for taking great care of himself and still looking 17 after 35 years.....and Francis Kreysa won the NASDAQ 55 tennis championship the same weekend.....I gotta get rid of some of those 50 lbs, starting today....need a Pepsi and some cookies....what's on TV.

Here's hoping for a good Thanksgiving for everyone and a better Christmas.

Jeff

Break Coming UP

2006-10-09T17:43:00.000-07:00

Two more treatments and a lengthy break of a few months or more is possible. The Doc today said that in two months we should not see significant changes in the tumors. Blood tests and a Christmas scan will provide the information necessary to either end or continue the break.

More later.

Jeff

New Scans

2006-09-30T07:01:00.000-07:00

Wednesday we met with the Doc who gave us decent news. Tumors have shrunk an additional 20%. Chemotherapy starts up again Monday. He hinted that leisa might get an extended break after about three more sessions. That will be very nice. The side effects seem to linger longer these days.

This whole cancer thing is getting very old. Please go away now. We've had enough. Nice of you to visit but get the %^$#@** out of here.

Thanks again for all the great meals, wonderful kindness, and prayers.

Jeff

Leisa gets a break

2006-09-20T08:40:00.000-07:00

We were sent home today without receiving chemotherapy because of a low platelet count. The Doc wants 80,000. Leis had only 55,000 but that was up from 25,000 last week. Tumor markers continue to decline and are down to 25, approaching the "normal range". CT scan has been moved up to Tuesday the 26th. The Doc sees us on the 27th. Who knows what great news we may get.

Sean shot a 67 yesterday at a not too easy course in VA. He's clearly cheating. Raegan continues to give us all the time we need from her. We have great kids, great friends, and are so grateful.

Jeff

Really bad blogger

2006-09-15T15:03:00.000-07:00

Well, folks, leisa is chemo-queen of the world and I am Chemo-sabe (you know, Lone Ranger...Tonto...). 10th treatment coming up next Wednesday after which new scans will be done (September 28). We will then know the state of the tumors and if chemotherapy will proceed or end.

All this depends on platelet counts and other things but I think we will proceed as outlined above.

As stated previously, there is really nothing to report these days. Leisa gets treated, feels like poo poo, rebounds, and gets treated again. We do venture out occasionally but we essentially have no life apart from the wonderful people who visit, bring food, and pray.

Tumor marker numbers are good but no one really knows their significance. People with low marker numbers still can have healthy tumors and people with big numbers can have small, weak tumors. Go figure.

I continue to ignore my wife and play golf with some regularity (and even go to work). Sean and Raegan are well. Molly is old.

Leisa sends her best to everyone. Thanks so much for all the wonderful support. Here's hoping there's an end in sight soon.

Jeff

Bad Blogger

2006-08-23T13:25:00.000-07:00

Well, ya can't do everything right. Please bear with me....

All we get is good news these days. Tumor marker levels (CA 19-9, specifically) continue to decrease. I've read a few studies related to the use of marker levels to measure the effectiveness of treatment. "A fall in tumor marker level was significantly associated with survival of the patients" and is "an early predictor of long-term survival in patients treated with systemic chemotherapy" to quote two of the studies. All involved with leisa's treatment are tickled pink. We are cautiously really happy.

Leisa's CA 19-9 markers went from around 46 to 38 over the past two weeks. I have seen marker levels in the 800's is some studies. 34 is in the normal range but we were warned that reaching the normal range does not mean tumors are gone.

Leisa was infused today so the next week will be slow and tired.

Thanks for all the meals. Thanks for all the prayers. Thanks for being great friends.

Much love to all.

Jeff

A week @ the beach

2006-08-05T16:08:00.000-07:00

It was so hot this week on the Jersey Shore. No golf, very little beach. Too many black flies, cold water, and hot sun. At least there was alot of stairs in the house we rented so leisa got a good leg workout every day. She's feeling pretty good as we arrived in Cape May today from Long Beach Island. We'll be back in Bethesda Monday afternoon for the next round of chemotherapy on Tuesday.

The back is still a problem. We need a new approach on that this coming week.

Jeff

Must be a better blogger

2006-07-21T05:27:00.000-07:00

I must blog more often, I must blog more often, must blog.....

Sorry. Its summer, I'm lazy, and there is little to report. Leisa is tolerating her chemotherapy much better. No nausea or other sickness, just fatigue for 4 or 5 days. We had a great trip to NJ to see leisa's Mom on the 13th through the 16th this month. She saw friends and family and had a blast. I got to play some golf. Leisa's back continues to bother her but gets a bit stronger every week. We set a new land speed record on our return trip (exactly 200 miles, 30 on back roads)---2:53 (69.44 mph)---beat that, you law-abiding losers. I'm turning myself in tomorrow.

We're off to the beach (Beach Haven on Long Beach Island in NJ) 28th through Aug 5th and then a weekend in Cape May before returning home Aug 7th.

Leisa's tumors continue to shrink with the associated markers in her blood reducing with each treatment. Feeling pretty lucky these days. Thanks for all your support. We could not do it without all of you.

There will not be much to report the next few weeks. Feel free to call me at 301-537-7236 or email at jeffketchum@yahoo.com., both of which will be with me at the beach.

Come over and sit on the porch with us.

Jeff

Shrinking tumors

2006-07-05T15:08:00.000-07:00

The most recent CT scan shows tumor shrinkage of about 30-40% and no new sites. The blood tests show reduced tumor markers. Treatment is going about as well as possible. We are thrilled. Alot of work ahead...and no trip to the poor house.

Chemotherapy today went well. Planning a trip to Flemington to see leisa's Mom and family next week. Trying to force some normalcy back into our lives.

Jeff

Insurance, again

2006-07-03T18:59:00.000-07:00

Got a call today from the Dr.'s administrator. The insurance company has verbally agreed to pay for everything except the monoclonal antibody (Avastin). Genentec, the maker of Avastin, has agreed to provide the drug without cost (based on leisa's somewhat skinny salary at St. Jane's ). I'll need to do some research to see which of our hard working friends got to the Archdiocese..... more later.

Good weekend, got out and about, even went to Wendys for some Haut Cuisine.

Back to reality Wednesday as chemotherapy continues and we get the results of the CT scan from last Friday.

Thanks, Tom, for your nice balls, Mickey for a geat pie, and to all other kind food suppliers too numerous to mention.

Happy Birthday America.

Jeff

Let's hear it for the insurance company

2006-06-30T18:14:00.000-07:00

Okay, okay. I know I'm lazy about posting new blog entries. Well, I'll try to be more informative.

I got home from work yesterday to find the standard summary of charges paid by the insurance company in the mail. They usually pay for MRI's and CT scans and various blood tests but, much to my surprise, they paid for the first two chemotherapy sessions....about $32K in charges. Pennies from heaven. Somebody at the Archdiocese did something.....Noooooooooooooo. After I chatted with the administrator of the plan I learned they had paid in error and will be wanting the money back. No kidding. I love these guys. Their excuse, "The charges on the bill were not well defined so they were paid in error". So, the message is clear. Be vague and you will be paid. It's becoming a very expensive, very bad joke. I hope they are at least embarrassed.

P. Oui is about as fatigued as one can be without being asleep. Nausea was not a problem during this last treatment (we have the nausea drug thing figured out) but her body has just about had it with the poison pumped into her. She had a CT scan today to see what the tumors are up to. We'll probably find out the result next Wednesday when we show up for the next session. Her back is not as good as we had hoped by now. I will pursue the vertibroplasty thing (literally crazy glue injected into the bad vertebrae) next week. It is known to provide instant and substantial relief in many cases. Life would be so much better if leisa weren't so limited by her back. The next 5 days should be better.

No water in our basement, plenty of great food, and lots of people praying for leisa...we are blessed to have so many friends. Thank you.

Jeff

Latest treatment

2006-06-23T13:20:00.000-07:00

Liesa got unplugged today from her 5-FU pump. Feeling quite well but extremely fatigued, as usually this time in the cycle. Her Doc is very pleased ("I'm excited") with the effectiveness of the chemotherapy. Often this type of cancer does not respond. Leisa's is.

A little more neuropathy this time but it is subsiding as I type today. Nausea drugs are working well. Hoping for a good weekend.

Still battling with the insurance company but we have some new "insider" help.

We send our joy to the Boylans on the occaision of their son Matt's wedding this weekend.

Thanks to all for the great meals. I can't stand it. Its wonderful.

Jeff

Great end to the week

2006-06-18T19:30:00.000-07:00

This weekend we went to a dinner party, leisa drove her car for the first time since the end of March, and she generally felt quite good. The insurance company said no thank you once again so we have a final appeal before more drastic action needs to be taken.

Suburban hospital started harrassing me three (3) days after I received their bill. It seems alot of people don't pay their hospital bills feeling insurance companies should pay every last cent. Anyway, it was so nice to hear from them so quickly and to feel like a criminal. Thank you Suburban Hospital. The care liesa got there was second to none but I guess the billing department needs a cut-throat attitude in order to get paid.

Next round of chemotherapy Wednesday through Friday. We can count on days 3-7 of the cycle to be nasty and the week following to be pretty good. New set of scans a week from Wednesday to determine the effectiveness of the treatment. We already know there a fewer cancer cells because of the markers' decline. Dr. said its a slow grower and a slow shrinker so don't expect too much from the drugs this early. The scans may not show a whole lot of tumor shrinkage yet.

I am not updating the blog very often because the cycle is becoming predictable as described above and there is really very little to report. I will certainly update the blog with any important changes.

The front porch might be done for Thanksgiving. Glaciers move faster. Glad we're not paying hourly.

Thanks for all the food.

Jeff

Tumor Markers

2006-06-11T15:41:00.000-07:00

Leisa's most recent blood tests show a decrease in the tumor marker count. Tumors apparently release chemicals to the blood and can be an indication of their size. I gather that lower count means smaller tumors. Good news.

Life-long friends Maureen and Gary and Maureen's sister Lynn paid a wonderful visit from Jersey Saturday as did most of the Gilders (with crab cakes attached). Great to see all of them. Such thoughtful people.

We're just lounging around this weekend waiting for chemotherapy side effects to leave. Should be a quiet week. The hospital bed and wheelchair are gone. The walker is rarely used. Hoping to get the &$#@*& out of the house and do something, anything soon. Hoping for a good week.

Jeff

Sleep, sleep, sleep

2006-06-05T19:10:00.000-07:00

Fatigue has taken over the past few days. Lots of sleep. Still eating pretty well (I'm eating extremely well). Walking better and better each day. Chemotherapy session Wednesday. Yippee.

Good visits this past weekend from cousin Lala (near Atlanta) and leisa's brother Brian and wife Dorothy (Jersey). Thanks for coming from so far away. Meant the world to Leisa (and me). Eloise (my cousin and leisa's best pal from college) arrives in town rom Cape Cod tomorrow on a school trip and will break away from her charges to visit.

We're in somewhat of a boring stretch where we are learning very little about the effectiveness of treatment. Its too early for scans, etc. Getting quite bored by hanging around the house as leisa's back heals enough that we can get out. We are going out tomorrow to visit our lawyer to sign a new crop of wills, powers of attorney, and advanced medical directives. Can't think of a more exciting venture. I hope you all have these documents in place and that all your records are perfectly organized in folders with legible labels in your safe deposit boxes....right.

My sister and brother-in-law's adoption of Tommy from Reno became legally proper last week. Tommy dropped a huge diaper WMD just prior to seeing the judge. With tears in his eyes, the judge dismissd them quickly. "W" could have easily found this one.

Thanks to all food providers. I should write you a thank you note but I'm way too lazy and ill-bred.

Go out and have some fun for us. Thanks, Suzi, for being a geat friend. And Cathy, you're the best.

Jeff

I'm getting lazy

2006-06-01T08:22:00.000-07:00

I'm getting a bit lazy with my postings. Yesterday we visited the Doc to check blood counts. All is well. The numbers are good. We are also encouraged by the improvement in leisa's spine. She's sleeping upstairs now and stayed out of the hospital bed all day yesterday. Walking unaided for good stretches.

We're even talking about going to a wedding June 24 and rearranging chemotherapy so she will feel good that Saturday. Might happen.

Our front porch is moving along nicely. It will be a grand space (38' x 13') perfect for banjo picking and good conversation. Can't wait to get leisa out there to hang out. We've had our porch furniture for a year and a half. The guy who sold it to us will be happy to finally deliver it.

I'm working about 60% of the time. Business is good. Clients are understanding. My cohorts are amazing at taking up my slack, of which there is plenty.

Insurance still up in the air. Have a feeling something good will happen soon.

Give us a call and come by anytime. I will not hesitate to tell you if the time isn't right so don't be relunctant to call.

Meals- still embarrassed by the process but love the food. Thanks to all the recent deliverers. Bob and Jan Allnutt showed up with bright red fingers straight from the strawberry patch. Boy, were they good. Peach pie, rubarb pie, blueberry and strawberry tart, brownies, cookies....when leisa is better I'm gonna get sick just for the goodies. Thanks so much.

TTFN

5/28

2006-05-28T20:02:00.000-07:00

Saturday sucked. Sunday better but extreme fatigue still has a grip. Hoping for a better Monday.

Beautiful weather here. Helps alot. Have a good day off everyone.

Betty Ann(e)and Roger, thanks again for a great meal Friday and a good party Saturday.

Jeff

2nd Round of Chemotherapy

2006-05-24T17:54:00.000-07:00

7 hours and a bunch of bags of bilious blech, we are home and leisa is none the worse for wear. Side effects are minimal so far. We had a good dinner and are seated for a suspensful session of the serial show Lost.

The week prior to today was a good one. Leisa's sorry spine seems solid these days. Our physical therapist friend whose fingers fashioned free and flexible feelings in very tight muscles worked minor miracles that allowed walking without walker yesterday.

Hope to get leisa out this weekend briefly to a party or two. Depends on white cell count Friday.

Insurance mess is now in the hands of a "peer to peer review", insurance talk for a discussion where dualing doctors decide if decent dollars deploy to deserving people. Hoping for the best.

The surreality of the past two months is fading as we are forced into returning to a more normal schedule.

Paul, quit doctoring and take up cooking full time. Thanks for an excellent meal. And Bobbie's brownies became better with each bite.

Have a good Memorial Day.

Jeff

Sunday the 21st of May

2006-05-21T19:34:00.000-07:00

I'm so glad there really is nothing to report. Leisa is doing quite well. A little more mobile every day. Eating well, laughing occasionally, and sleeping well. Pain medication is almost finished.

Went to the wig place Saturday and bought a wig @ about 1$ per hair. Holy smoke. I thought we should wait until at least one hair falls out but NOOOOO. It sits proudly on top of the TV.

Wednesday is the next round. Wish us luck. If you know any tricks to get the %^$#@ing insurance company to pay for leisa's treatment, let me know. We're in the first round of appealing their denial of coverage. Who knows what will happen?

Thanks again for all the great meals. Its a little embarrassing in view of the fact that all of you have little else to do but it makes life so much easier here and we are grateful.

Have a good week.

Jeff

Wednesday the 17th

2006-05-17T16:05:00.000-07:00

Saw the Doc today and got a booster shot to help the white cell count. All other indicators are good. Back is looser, fatigue lessening.

There's not much to report these days. If there is no posting for any particular day then you can assume nothing is going on. It should be quiet until next Wednesday.

Jeff

Quiet week

2006-05-16T03:58:00.000-07:00

Back improving but not great yet. Fatigue still has a grip but slowly leaving. Hoping for a continuing gentle week.

The bagel fairy has starting leaving milk shakes. Meals are great. Thanks.

Did a full work day yesterday. Felt odd.

Distant friends and relatives who would like to visit, the time is getting close. This weekend might be good. The following weekend will not be good but June 3 and 4 should be okay. Did I say June? We've lost a few months somewhere. Don't expect a whole lotta fun. Plan to do others things as well. Leisa cannot, at this point, handle hours at a time with people but would love to see everyone.

Let me know if I can make hotel arangements for you. Pooks Hill Marriott is 5 minutes from the house: 301-897-9400

My email is jeffketchum@yahoo.com

Jeff

Good weekend

2006-05-14T15:48:00.000-07:00

Peaceful, restful weekend. Lots of sleep. Raegan returned from a few days away. Its so nice to have her here. Sean bought a suit and went out on the town last night to a Gonzaga event at the Hotel Washington. Good that he got out.

Molly dropped a calling card on the family room floor. Her way of saying, "Hey, I'm here. Give me some attention". We did.

Thanks to Dave and Karen as well as Shannon for great meals. Each of the meals we get is good for about three days to eating so I think, after Friday, we can take a week off from your generosities. Thank you all. When this is all over I'll fix your plumbing or repair your furniture or some other useful task. By the way, its Kelley, with 2 e's. Sorry Ann...or is it Anne or An or Angeline?

Still trying to gently talk leisa into going to the 6th grade play on Wednesday. Looks 50-50 right now. She's worried about scaring the kids or drawing attention away from them and the people who are working so hard to get it on the stage. We'll be forever grateful.

The best blueberry thing just arrived warm in the carport. I ate some before dinner. Don't tell anyone. Thanks, L & L.

Should be a quiet week while leisa gets her legs back. Taking alot of loops around the first floor. The back is still fragile and ready to spasm at times but doing better than a few days ago.

One of the drugs liesa gets is Bevacizumab. Who makes up these names? Why not call it Ralph or something else onomatopoeic (sp?) so we can remember it?

Have a good week. We plan to. And remember...always keep a litter bag in your car. When it gets full, just throw it out the window.

Jeff

Saturday, bright and early

2006-05-13T02:44:00.000-07:00

The dichotomy of this disease astounds me. So many contradictions. I love spending most of my time with leisa but hate that she suffers. Having the kids around all the time is a true gift but seeing their young lives on hold at a usually frantic time makes me feel for them. Seeing and hearing from family and friends all day is a true blessing but why do we ignored each other so consistently when times are good? Shut up and tell us about leisa...okay.

Leisa slept beautifully last night. As bad as the chemotherapy drugs are, the fix 'em up drugs are wonderful. We weren't told beforehand about yesterday's infusion drug repair. It would have been nice to know that there was something good to anticipate. Now we know.

Leisa's 6th grade musical happens Wednesday (17th). She got a good start with the kids beginning near the first of the year but hasn't worked since March 29. Various faculty members, parents, and friends have joined forces to put "Peter Pan" on the stage. Once again, we are humbled by this effort. Can you imagine picking up the production of a play in mid stream and getting it done, having never done it before? I hear the result is remarkable and hope I can get leisa to see it. I'll do my best. I'll be there at a minimum. Sarah M., you're the best for taking the bull by the......horns and leading the effort. It would have been so easy to just cancel the play this year. Thanks to everyone for stepping up.

Thanks for the meals. Your kindnesses give me that much more time to be with our girl.

There are so many good things going on around us. Top of the list is that my sister Eleanor and brother-in-law Mike will have their final court date June 6 giving them their beautiful adopted son Tommy "free and clear" Great looking little man that has been with them for about 6 months. Both he and his parents are lucky to have each other.

By the way, the posting times are Pacific time. I'm not typing at 3am.

Love,

Jeff

Friday 5/12

2006-05-12T15:21:00.000-07:00

The day started poorly with a 3am barf fest followed by the inabilty to eat. We took off to have the pump disconnected at the Doc's office at about 2pm. The Doc decided to infuse leisa with pain meds, anti-nausea goodies, and a bunch of sugar/saline solution. Much better this evening. I smacked her for barfing on a perfectly clean tennis shirt....bitch (My apologies to those who really don't know me. Now you do).

We have 12 days to recouperate before doing it again.

Mrs. Kelly- great chicken lasagne not to mention the shrimp. Thanks so much. We have meals through Monday. What great friends we have. Brings a tear to the eye.

Please call before visiting. This weekend should be the worst days in terms of fatigue, then up from the depths.

Much love to all,

Jeff

Not a great day

2006-05-11T18:07:00.000-07:00

Chemicals caught up with leisa. Totally fatigued. The back (L2) is trying to regain its hold as well. Tomorrow will let us know if we need to do something different about the back. We go at 1:30 to turn in the 2-day pump and look forward to 12 days before the next treatment. Fatigue should max out by Sunday and start to resolve for about three days thereafter. The offending drug is 5-FU. We all know what the FU stands for.

Tom D'Amour accused me of whining for meals in my last posting. Must have been effective...he made a meatloaf and bread for us. Both were outstanding. If you are bringing us a meal, please provide linen napkins and appropriate wine glasses along with a waiter and cleanup crew. Thanks.

Still waiting on the Archdiocese and its decision whether on not leisa's treatment will be paid for. Can't believe they can deny coverage that may save her life. Go figure. We hope the decision makers will wake up soon and do the right thing.

The weekend should be quiet. Might get in a round of golf and cut the grass. Simple pleasures. They're the best. Molly (the dog) is presently shaking from the thunder but I find it soothing. We need the rain. Need sleep. Good night. Cancer, to put it simply, sucks.

Have a good weekend.

Jeff

Infusion Yippee Time

2006-05-10T17:11:00.000-07:00

7 hours in a large room with a dozen people receiving various "bags 'o fun". One guy was getting what appeared to be fruit punch. Another woman had a bag a urine colored delight flowing into her. At least leisa's stuff was clear. 14 bags later, we are home with basically no side effects. They will creep in over the next few days and should not be too bad. Fatigue, sensitivity to cold food and drinks, a few aches and pains are all we expect. Neuropathy (tingling fingers and toes) may appear after 2 or three treatments but will disappear when treatment ends.

Back tomorrow at 9 for an hour for an EKG as part of a nausea medication trial in which she is taking part. Leisa has been so pleased with the people treating her that she agreed to "give a little back" by doing the trial. Its a double blind trial where she gets both an oral and IV nausea medication, one of which is a placebo. Works real well so far.

We have only one meal in reserve in the fridge. I mention that only because three people requested that I list our food situation here so meals can be organized. I hesitated because it seems presumtuous but what the hell. Thanks in advance.

We are both so tired in anticipation of getting this treatment started. Where, when, what, and who will pay have worn us out. We've taken a variety of leisa pills and expect to be awake in early June (thanks E).

So, come visit at your leisure but call (301-537-7236) first. We have until Wednesday the 24th to relax and try to get back to some sort of normalcy.

Much love to everyone.

Jeff

Infusion starts tomorrow

2006-05-09T17:23:00.001-07:00

We toured the infusion center today, only 5 minutes from home. We'll be there 5 hours tomorrow (Wednesday), then home with a 46 hour pump, then off for 12 days. I have determined, through my amazing powers to see into the future, there will be no side effects and that leisa will be doing squat-thrusts (with a push up) next week.

Leisa is still a little slow on her feet as she tapers of oxycontin. Improving every day. Uncertainty of tomorrow has her a little nervous but, once again, drugs have come to the rescue. No reason to suffer pain or anxiety at a time like this.

Please call me (301-537-7236 cell) before visiting the next few days. I would hate to turn anyone away at the door like a big-old meanie, especially in view of the huge kindness we've received from everyone.

Still working on who will pay for the drugs. Not as expensive as originally reported but it would be nice if the Archdiocese, who carries our insurance, would step forward to pay for treatment for one of its more devoted members. The manufacturer of one of the drugs has agreed to provide "drug replacement", their term for free drugs. That leaves about $2K per treatment which will not break the bank.

Much love to everyone,

Jeff

Odds and Ends

2006-05-09T03:20:00.000-07:00

I can't begin to describe the love and support coming from all directions. The depth and range of leisa's reach into the community is humbling. As I go about my life of producing income and raising Raegan and Sean with leisa, she is busy raising hundreds of kids, bringing joy to and comforting hundreds of families with her singing at weddings, funerals, and masses, and using her children's choir to bring a smile to sick people, holiday crowds, and the congregation. Never seeking praise, always up to the challenge, she loves it all. I am just now getting the true sense of what it means to be selfless through leisa's example.

Enough, enough. Today we go to the good Doc and find out what chemotherapy is all about. The uncertainty is driving us a bit crazy. The next week will be an adventure in.......poisoning. Here's hoping that it ain't so bad. Leisa is ready for anything and just wants to get on with it. Her back still annoys her and her mobility is improving but limited. Spirits remain high.

I went to work yesterday for the first time in over 5 weeks. I like it here at home much better. People actually want things from me at work. Imagine that. Truth is my long-time friend and trusted associate Dave is handling the business with the help of other friends. My life is made so much easier. Thank you doesn't cover it. You will all be rewarded. (I'm thinking $5 CVS Gift Cards or Swiss Colony Beef Logs).

Thank you everyone. We couldn't do it without you.

Jeff

Too clean on Monday

2006-05-08T07:54:00.000-07:00

My sister mentioned that this blog was too clean and clearly not written by me. So,I've decided to make a change. I killed my sister.

Leisa continues to rest well and loosen up. The physical therapist made her last visit today and sent P. Oui to walk unaided anywhere she desires to go.

The front porch progresses nicely . The hammering and sawing are soothing. Leisa may disagree . We can't wait until its done in about a month.

Chemotherapy starts Wednesday. If you want to scare yourself, google such fine terms as Avastin, Folfox, 5FU, and Leukovorin and read about the side effects.

I'll report in after Wednesday's session. I'm actually going to work today.

Raegan's dog keeps digging up the freshly planted plants you all have brought. I'm sorry. And thanks so much for all the meals.

Jeff

Quiet Saturday

2006-05-06T21:23:00.000-07:00

Nothing happened today as we relax and gear up for good ol' chemotherapy. Leisa's back continues to improve. The walker may be history in a day or two.

My email address is jeffketchum@yahoo.com if you have questions or comments. Please come by at your leisure but call me first (301-537-7236) to see what's going on.

Those of you out-of-town wishing to visit, this next week will tell us alot about when to come. More on that this coming week.

Friday May 5

2006-05-05T20:08:00.000-07:00

Friday was a good day. The oncologist offered to start leisa's chemotherapy at his cost while we try to get the insurance company to pay. We now have two Monsignors working on the Bishop to allow payment for the drugs. It turns out that the Archdiocese is self-insured. We just need someone near the top to speak up. I think it will happen soon. Otherwise, we've applied to the drug companies for payment assistance based on leisa's gigantic teaching salary. Either way, leisa gets the drugs in a comfortable, private setting 5 minutes from home.

So glad leisa can avoid the Georgetown trial. She would have gotten drugs free but the trial is designed to see what doses can be tolerated. Glad we got rejected for the short term based on Leisa's radiation the last few weeks.

Every day shows improvement in leisa's back. The tumor on L2 has shrunk a bit and pain management is easy as she tapers off oxycotin. She'll be walking unaided in a day or two. Having all this old people equipment (walker, commode, wheelchair, hospital bed) around the house is a bit disturbing but it all will leave soon.

A few people have asked for our address:

5711 Cheshire Drive
Bethesda, Maryland 20814

The next month will tell us alot about the effectiveness of the treatment. Leisa can feel all your prayers. Thanks.

We did have a miracle today....Sean cleaned his room.

Jeff

leisa's update

2006-05-05T00:17:00.000-07:00

Just got an email from the Georgetown Clinical Trial. The trial sponsor requires a 28 day waiting period because of the radiation leisa received on her spine. That's unacceptable at this point. We've waited too long already.

We are mouting a last ditch effort to get the desired chemotherapy drugs for private treatment. The Georgetown doctor (John Marshall) shocked us by telling us the cost-- $27,000/month-- so it is no wonder our insurance company denied the original request. Anyway, we have two trusted friends pulling out the heavy guns to finally get. The oncologist seems a bit miffed that I have gone behind his back to get action. Whatever it takes, I say.

Leisa was very comfortable yesterday and was able to climb the stairs to the second floor for the first time in about two weeks and take a reak shower. Should be improving each day. Spirits remain good as is her fighting spirit. Once she starts chemotherapy, I think she will feel as if the fight has begun and her outlook will further improve. She really can't walk unaided yet but that is soon to happen.

Hate to be rude but people are staying way too long when visiting. Try to keep visits to 15 minutes. So many people come to the house every day. That is wonderful, appreciated, and desirable and we love it. But keep those visits short. The love and caring expressed is humbling. We are so grateful.

Since my job for the last three decades has been to find the most minute details about obscure technical things, I know way too much about cholangiocarcinoma, treatments, and possible outcomes. If you have questions, the NIH and Hopkins websites are most informative. There is also a cholangiocarcinoma.com site with all kinds of info.

I may go back to work someday soon. After more than a month off, retirement sounds better and better. On the other hand, so does eating. Better get back to it soon.

Much love to all concerned.

Jeff

5/3/06

2006-05-04T03:37:00.000-07:00

Hi everyone. We are currently considering treatment options:

1. Georgetown University study using drugs similar to those denied by our fine insurance company

2. Treatment at local oncologists office using drugs known to slow the tumor growth.

3. Going to Acapulco or Cancun to rest in the sun and eat great Mexican food for a few months.

Leisa is much more comfortable now after 5 days at Suburban hospital treating back pain caused by a very pissed off tumor on her spine (L2). She's home and doing quite well. Radiation has shrunk the tumor and it should continue to shrink over the next month. The disease combined with pain medications makes her very tired most of the time. If you visit, please keep it short (15 minutes is good, half an hour is too long).

If you google "cholangiocarcinoma", you can read about leisa's disease. You will find there really are no effective treatments. Its a tough damn cancer. We need to get very lucky.

The next two weeks will be relatively relaxing as we find out if leisa is allowed into the Georgetown study. Treatment is some kind will proceed regardless.

The hundreds of cards and well wishes are truly appreciated and have had a very positive effect on leisa's spirits. Thank you so much. The maturity expressed by some of her students has been remarkable and speaks volumes of their parents, the church, and the school. All should be proud.

The nail banging from the construction of our new front porch is a nice distraction for me. I am often outside making sure the builder and his crew are doing everything perfectly.

So, please stop by. leisa loves to see people but keep it short please.

Jeff