5/28

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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