The Assertive Cancer Patient

T-DM1 Update

I haven't written much about T-DM1 recently, given that I've been battling C. diff. for months and also I've been buried in the paperwork to get me on Medicaid, which is paying for my new digs at Fred Lind Manor.

Of course, virtually all of my monthly SS Disability payment goes to pay my share of the bill there, and Medicaid pays the rest.

Don't ask me to explain the whole Disability/Medicare/Medicaid process, because I don't understand it myself. Just glad that I made it through. The prescription drug/secondary insurance parts of this are a mystery still.

Back to T-DM1

I've been going over to the Seattle Cancer Care Alliance once every three weeks to get the T-DM1, and it is still working for me. My most recent tests and scans--PET, CT, MUGA, and tumor markers--show that the drug is holding my cancer in check. In remission, actually.

I haven't been keeping up with what is happening on the big issues re: access to T-DM1. If you know, please post a comment below.

There are some new T-DM1 clinical trials, one for women with metastatic HER2-positive breast cancer who have NOT been treated with other chemo drugs, and there are some Phase III trials. The problem there is that you have to agree to be randomized, so you may not get the T-DM1 at all. That's how research works.

The trial that I fought to be enrolled in here in Seattle is no longer accepting new patients. Again, the explanation is long and complicated and I'm not sure I could explain it accurately.

If you'd like to read about my experience with this drug, here is my first post on T-DM1, dated April 2010: Some Good News, for a Change ...

That's in the T-DM1 category. 

Abigail Alliance

One group that helped me a lot in my battle to get T-DM1 in Seattle was the Abigail Alliance. 

Frank Burroughs, one of the founders of that organization, sent me this e-mail recently:

 I wanted you to know that the Abigail Alliance continues to think of you.

In March our Abigail Alliance cofounder Steve Walker will be one of the speakers at the CalBio conference: http://www.biocom.org/event/CALBIO_2012. Among other things, Steve will talk about T-DM1 as one of the examples of FDA just getting it wrong.  He will be sharing the stage with former FDA Commissioner Andy  von Eschenbach.

@ Jeanne Sather 2012.  

Moving On

The snow is gone, and I will soon be gone as well: released from the rehab/skilled nursing place and into my assisted living apartment. 

That is scheduled to happen Friday. My friend Linda is coming to pick me up and take me to the drugstore, where my "discharge meds" should be waiting for us, and then to Fred Lind. 

The Wifi is working in my room at the rehab facility today (a miracle--I usually have to wander the building looking for a place where I can catch a strong enough signal), and I'm taking care of all sorts of things (confirming rides with friends and so on) and approving comments to my blog.

If you have e-mailed me and I haven't replied, I hope to get to that today. If I run out of steam, then tomorrow or Friday morning. Tomorrow I will be at SCCA to get my T-DM1 and see Dr. Julie Gralow. I'll get the results of Monday's scans, but I'm not anticipating bad news there. 

My biggest worry is keeping the C. diff. at bay. My tummy is OK right now, but I'm still on the vancomycin (an antibiotic). Each time I've finished a course of antibiotics recently, the nasty infection has returned within a couple of weeks. But, as I believe I mentioned the other day, I am seeing the infectious disease doctor on Monday, and I hope he has a plan.

I know that several of my cancer blogger friends and also readers of my blog have been dealing with this infection recently. I would like to put in a whole string of expletives here to express how I feel about what we all have gone through with the C. diff.--%%%****!!!###@@@!!! 

Does like look like swearing? Not really. Oh, well. 

A New Life

I will need to build a new life for myself in this new place. I don't expect it to be easy, but I think I'm facing it straight on (it helps a lot that my depression is gone). I'll be blogging about this as I move forward. As always, please don't give me advice or suggestions for making this change. If you want to leave comments about your experience during this kind of transition, please feel free.

I prefer: "This is how it was for me ..." Or, "This is my experience ..."

Rather than: "You should ..." Or similar comments. I know that I am exceptionally touchy about this, but it's not a part of my personality that is going to change, so please respect my wishes.

Otherwise, I can't write honestly about how I feel, and that is the whole point of this blog.

An OT staff person just came in, saying she has to do my progress report, and of course I'm still in my jammies. She went to get her computer to see if it will work in my room. Otherwise, I will have to get up and get cleaned up and dressed and go to the rehab room. I wasn't planning on doing that until after lunch, so we'll see.

 OK, that's over with, and lunch has arrived at my bedside, so I guess I will eat, then get dressed and cleaned up and head down to the rehab room to work with my PT guy. Gotta get stronger.

 

@ Jeanne Sather 2012. 

Snow Daze

Those of you who live in the Seattle area (or in the state, for that matter) don't need me to tell you about the snow and ice storms of the past week, and I understand we made the national news as well.

The snow disrupted some of my plans for last week, but not too many, and The Ranch (my skilled nursing facility) had power and heat. Short staffed, some days, and my favorite nurse ended up working two shifts back to back in order to cover for others who couldn't make it here. 

Physically, I'm still tired and weak, but definitely improving. The second bout of C. diff. is under control, but that's with me on vancomycin. I am worried about the long-term plan to keep it away, and I have an appt. with "my" infectious disease specialist on Monday the 30th. I'll stay on the vanco till then. 

Progress

Andrea ended up taking me over to Fred Lind Manor on Friday. We had a measuring tape and drew out the floor plan with measurements. I also had a list of the furniture that I want from the house.

It's a small studio (14' by 20', I believe). The "kitchen" is like a doll kitchen--a tiny sink, tiny fridge, and microwave. No counter space to speak of. 

Two closets, one quite large, and a reasonably sized bathroom with grab bars everywhere and an emergency cord. Only one window in the whole place. 

Yesterday, Saturday, Linda picked me up and took me to my house. This is always difficult for me, emotionally, but I needed to do it. I put post-a-notes with the word "take" on the pieces of furniture I want moved to Fred Lind, and we also boxed up sheets and towels, cleaning supplies and TP, and a couple of paper lamps to protect them during the move.

Tomorrow, Monday, a gang of six--Younger Son and five good friends--will be moving the furniture from the house and arranging it in my new home. The only thing that I'm worried about them having trouble with is my brass bed, which belonged to my great-grandmother, the Norwegian one. I've slept in that bed since I was 8 or 10, and I'm not ready to let it go. 

Plus, it has a new mattress.

While the move is going on, I will be at the Seattle Cancer Care Alliance to get scans required by the T-DM1 clinical trial. That will take three and a half to four hours, and yet another friend is driving me. 

Then back to The Ranch, where I have a "care conference" scheduled. I'm not asking YS or any friends to come to that with me, since we had one weeks ago before the return of the C. diff. I think I can handle it. At this meeting, the staff here evaluate my fitness to go to assisted living. 

Then, it takes them several days to do all the paperwork to spring me (don't ask--even I don't know why it takes so long). I'm hoping they release me on Friday ... we'll see.

The day before that, I have treatment at SCCA. With the blood draw, doctor's appt., and then treatment itself, that takes something like five hours. 

Oh, and then the following Monday, a week from tomorrow, I see the ID specialist in his office--which is all the way up in Edmonds--to talk about a plan to keep the C. diff. from coming back. I've had three bouts in four months. 

Cancer--it's not for sissies. 

Random notes:

I'm no longer wearing diapers.

The food here is beyond terrible, but at least I can eat small amounts.

I don't think Fred Lind has Wifi for residents, so there may be a gap in communication around the time of my move. I'm going to ask them to consider putting in a network ... there may well be other residents who want to get online. If not, I'm going to ask a techie friend to set one up for me.

Worried about the cost of that, but it's not the first thing on my list, so I've marked it to worry about later.

I have decided to continue with my blog. For awhile I thought I was done with it, but I don't think I am. I have a new life to make for myself, and the blog--and your support--will help me do that.

 

Jeanne Sather 2012.  

 

 

So What Is Wrong With Me?

Dr. Doug Lee discharged me from NW Hospital on October 26. He told me at the time that I did not have meningitis of any kind, but he did not know what was wrong with me.

He said that what had happened on Friday October 21--spiking a fever of 104, the confusion, the fact that I nearly died--could happen again at any time. But he did not know the cause. See: KIRO-7 story about me.

I was more than a little surprised that Dr. Lee was sending me home, but because I wanted to come home, I took the discharge papers. I was also surprised that Dr. Lee did not recommend a neurologist, since he did mention at one point that seeing a neurologist would be my next step.

However, I have been having trouble sleeping since I've been home. Younger Son has slept here for three or four nights since October 26 because I'm scared and because I asked him to stay.

But YS is very busy with school and needs to sleep at his apartment most nights in order to keep his own life on track. He is a senior at Seattle U who also sings in the choir. The choir is preparing for its Christmas concerts. Jesuit school = Christmas concert, not holiday concert. 

E-mail me if you would like more info about these concerts--they are wonderful. One is Friday, December 2, in the evening. That's the one I'm going to, and the other is the following Sunday afternoon. I don't have ticket prices or exact times yet. About $12 to $15 for tickets, I believe.

E-Mail to Dr. Julie Gralow, October 27

Subject: Questions about staying in the T-DM1 trial

Julie--I have a couple of serious questions about my ability to stay in the trial, and I hope you will get back to me as soon as possible, for my stress level if nothing else. (I shouldn't even say that, you are always good about getting back to me, but I am extremely stressed, not to mention in a fair amount of pain.)

Problem 1: I had surgery on my spine on Sept. 21 at NW Hospital. It was a vertebroplasty, because T-7, T-8, and--especially--T-9 were collapsing from earlier tumors and also from the radiation used to treat them. Three times, as I recall: Twice with conventional radiation, and once with cyberknife on T-9 because it had been treated previously with conventional radiation. 

The cyberknife treatment to T-9 was within the past two years--I can get the date if it is important and also give you details about the doctor and so on. Scans showed that T-9 was about half its previous height, and, as I said, I was in a lot of pain and could not straighten my spine.

I hope this surgery itself is not a problem.

Problem 2: I was hospitalized in quite dramatic style last Friday afternoon (passed out in the back of an ambulance with a fever of 104--I gave them my name and said "Northwest Hospital" before I passed out) and I was initially diagnosed with acute bacterial meningitis, which of course could have been caused either by the spine surgery or by all the spinal taps I've been having at Dr. Lee's recommendation.

I also had C. diff. when admitted. Now, I had not had a single bout of diarrhea before I left my house that day, but I suppose it could have come on that quickly.

My doctors are now telling me that I did not have meningitis, but they can't tell me what was wrong with me.

Does this jeopardize my enrollment in the trial in any way? I am scheduled to get treatment next week, Wednesday, I believe, and with your permission I will be there with bells on. Well, maybe I'll have someone come with me this time to ring the bells. I am still in pain in my spine and shaky from the near-death experience. Even after all these years with cancer, Julie, I wasn't ready.

Thank you. E-mail is the best way to reach me, especially because I can't find my cell phone charger. It's in the house, that's all I know. 

Actually, it was not in the house, so I expect that I left it at the hospital. When my attorney's staff person called to ask about the charger, the staff on the oncology floor, 4, apparently got very weird and would not say whether or not they had my charger. I decided I didn't want it back after all, since it would be contaminated with C. diff. I bought a new charger for about $30 on Tuesday, after my interview with KIRO-7 TV. 

October 28 E-mail to Dr. Julie Gralow and Dr. Xie Bin

Julie Gralow is the breast cancer medical oncologist who is in charge of my T-DM1 clinical trial. See: Meet Dr. Julie Gralow. Dr. Xie is a resident on her team. I like them both very much and also trust their opinions.

Here is part of the e-mail I sent them on the 28th of October:

I am still in fairly severe pain in the T-spine after the 9/21 surgery (a needle broke off in my spine and is still there--don't know if that is contributing to the pain or not), and a little pain in the L-spine from the most recent LP, which was within the past week. I have everything I need to handle the pain, plus lots of experience, of course.

My experience at NW Hospital this past few days was horrific, reminding me of research I've reported on that says don't be admitted to a hospital on the weekend if you can help it.

However, I have lots of support from friends, family, and various professionals. They are taking excellent care of me and I am emotionally strong. Physically--not bad. I took a short walk today to several neighbors' houses just to let them know I was home and to get some fresh air. I will be able to come in for treatment next week without a doubt, unless I am hit by the proverbial bus.

Thank you both. I'm nervous about being bumped from the trial, but it sounds like that may not happen. I'm still completely cancer-free and have some new biopsy results to prove it (from the three bones in my T-spine that were treated with vertebroplasty). 

October 28, Dr. Julie Gralow's Reply 

Hi Jeanne - I just heard about your admission from Kara and am sorry to hear about it.

From your e-mail you sound like you're thinking OK again. I've cc'ed Bin Xie to help us sort out what's going on as I'm in Vienna until Sunday night. Did you have another MRI of the brain and an LP (spinal tap?). We'll try to keep you on T-DM1 if it seems like the right thing for you. Julie

October 28 E-mail From Dr. Xie Bin 

Hi, Jeanne,

I am sorry to hear about your admission to NW hospital. Do you mind I call Dr.Yee [Dr. Lee] to get more information about ? meningitis and how it was treated? I understand you prefer to communicate by email; I'll be very happy to speak to you if you want. My number is 206-000-0000.

October 28 E-mail to Dr. Xie Bin 

Please do. It is Dr. Doug Lee. 206-000-0000.

I should also point out there is some disagreement among my doctors. Dr. Lee will tell you that I did not have meningitis at all, while his partner, Dr. Sam Tolman, at the same number, diagnosed me with acute bacterial meningitis last Friday and treated me with antibiotics. I improved almost immediately. (Dr. Lee was out of the office at the time I was taken to the ER.) 

... [I asked Dr. Xie about his Halloween costume] ... By popular demand, I will be repeating last year's costume, The Witch in the Wheelchair: Witch in the Wheelchair

October 28 E-mail From Dr. Xie Bin 

I reviewed the records (discharge summary from Dr. Lee) and spoke with Dr. Lee this afternoon.

The etiology of your mental status change is not entirely clear. The CSF showed WBC of 1, glucose of 58 on the day of admission does not support bacterial infection. We expect WBC in CSF much higher.

Viral mengitis is a possilility that got better on its own, although we do not have viral panel on CSF.

Fever from c diff infection that causes mental status change is also a stretch.

Foreign body from the vertebraplasty unlikely.

ID at NW Dr. Ehni was consulted. It is not meningeal carcinomatosis (negative MRI imaging and cytology from 4 LPs).

Jeanne did receive 5 days of ceftriaxone.

Dr. Lee plans to do MRI of brain next Thurs when he sees you (last one was about one month ago).

Jeanne, I do not think we clearly understand what caused your mental status change. The important thing is that you are better now. I do not think that this is caused by TDM-1 and there is no obvious contraindication for you to continue TDM-1 trial next Wed.

I hope you'll enjoy Holloween with your son and friends. I am not planning on costume, but my 5 yo son will be Darth Vader.

Best wishes,

Bin

T-DM1 Treatment November 3

This was my third treatment in Seattle and was completely uneventful except that I reported elder abuse by Older Son, which has continue for years.

Dr. Gralow referred me to neurologist, Marc Chamberlain on November 3, and that referral went into the computer that same day,

Today, November 4, Trying to Make an Appointment with Dr. Chamberlain

I called Dr. Chamberlain's office at about 10 a.m. to try to make an urgent appointment to see him.  

First, I got caught in voice mail hell, which explained all the things that needed to be faxed to the Neurology Dept. (this is at the UWMC). 

Since I knew he already had the referral from Dr. Gralow, and I knew I would call or e-mail Dr. Lee's office today to ask that the records from my most recent hospitalization be faxed over, I didn't think that Button 2 on Dr. C's voice mail hell applied to me. Plus, this is an emergency. 

I went back to the receptionist and explained my situation. T woman who answered the phone--I didn't catch her name--listened to my situation very patiently, and said I should speak with Genese (I'm not sure I spelled this correctly) Davis.

The nice woman transferred me to Ms. Davis's line. A recording said Ms. Davis was on the phone, and gave me the number to have her paged.

That was at 11:45.

She won't recognize my name unless she checks the computer, and then she will see she has a referral from Dr. Julie Gralow for me to see Dr. Chamberlain.

Let's see how long it takes her to return my page. So far, 30 minutes. I'm going to call her again.

Some voice mail hell at the neurology clinic, then I paged her a second time. I asked the paging operator if there was anything wrong with the paging system today, and he said not.

It is now 1:01 p.m., and no reply to my pages to Ms. Davis.

I sent an e-mail to Dr. Lee asking that his office fax my records from my most recent hospitalization (I call it "the meningitis hospitalization") to Dr. Chamberlain, because I know he needs those records in addition to my referral, which is already in the computer.

At 1:10 p.m., I receive a cCall from Dr. Lee's office to let me know that Stephanie, in that office, was in the middle of faxing the records I asked for to Dr. Chamberlain's office.

Still no answer to my page.

It is now 2:17, and I have been working on making this appointment since 10 a.m., including writing this post so that I would have all the info together for Ms. Davis or the doctor himself when I spoke to them.

I think it's time to push this live, and then ask my attorneys to make a phone call.

 

@ Jeanne Sather 2011. 

T-DM1: Duped?

 

I had my second (Seattle) dose of T-DM1 yesterday, but I couldn't feel good about it.

I do not know one single woman, other than myself, who benefitted from that battle. I'm not even sure that the information I've posted to my blog is correct, and no one else seems to know. Here's the best I can do: The Right Ending--T-DM1 Drama

The idea, I thought, was that Genentech was supposed to allow woman like me who were enrolled in its Phase II trials of T-DM1 (at only 12 sites, nationwide) to get the drug closer to home. So I was having to travel to Southern California, and, after lots of yelling and screaming, I was able to get it in Seattle. 

I'm going to stop here, and give anyone who did manage to enroll in a clinical trial closer to home to get in touch with me. 

As a friend of mine, also a journalist, wrote: "It seems [that everyone] was duped about the expanded/extended access, and this may have given false hope to other women who want the benefits of the T-DM1."

Ouch!

© Jeanne Sather 2011. 

 

The Seattle Times Article: 'Never Out of the Woods'

One of the more chronically overused cliches in print and broadcast news is "ironically." 

After earning my master's degree in journalism at the University of California at Berkeley, I never use it, in any of its forms. 

Or not until now.

Plenty more cliches come to mind here, including, "There's always a first time." Feel free to add appropriate cliches in the comments box below, but please don't point out that I don't have the little mark over the "e" in "cliche," unless you'd like to teach me the html for it.

Back on Topic

The word "ironic" springs to mind because the page one story about the T-Drug and me includes the most beautiful, glowing photos of me--with Constant, of course, and one more with Ella, a young friend--taken in recent history. 

The story was published on September 21, two days after I was admitted to NW Hospital (now part of the University of Washington Medical Center). 

I didn't leave the hospital for 13 or 14 days, depending on how you count. My doctor didn't want me to leave at all, not really, he wanted to send me directly to an in-patient rehab center. More on that later. 

Obviously, I refused. And I played a joke on him just before my release that is too good not to share, but that also needs to wait for another post. I need to move on to Citi and saving my house from foreclosure. 

The greatest irony, to my mind, is in the final two paragraphs of Carol Ostrom's story:

Sather knows her health still is precarious and can change day to day.

"I'm never out of the woods," she said. Yet, her first T-DM1 treatment in Seattle buoyed her with energy last week. "I'm in remission on this drug, the first time in years," she said. "I'm in this bubble of happiness."

See: Seattle Times  Breast cancer blogger gets drugs closer to patients

@ Jeanne Sather 2011. 

 

The Right Ending--T-DM1 Drama

When I say this is the right ending to the whole get-T-DM1-in-Seattle battle, which lasted 18 months, I should say that I THINK this is the right ending. 

Who knows? There may be more.  

1. Genentech (Dr. Terry Rugg, in this case) told me that they were going to apply for EXPANDED ACCESS for the Phase II clinical trial that I was already enrolled in, and then--if the FDA approved it--I could get the T-Drug in Seattle, assuming several other things like IRB approval.

2. Sources at the FDA told me, repeatedly and in writing, that what Dr. Lee and I needed to do was apply for a Single Patient IND (Investigational new drug). See: FDA's Deb Miller: She Says ...

Both sides continued to insist on their positions, and Genentech told me on August 1 that they had sent the application for the above to the FDA, and the FDA had 30 days to review it. Meaning to approve or deny it. 

3. The FDA approved Genentech's application by default, meaning that the FDA took no action at all--no hearings, no nothing. But I didn't know that until well into September, because neither side bothered to tell me, despite several e-mails from me. My stress and anxiety levels were through the roof (cliche alert) at this point. Remember: Stress makes breast cancer progress faster.

4. On or about August 15, Kara Kendall called me. She's the clinical trial coordinator who works with Dr. Julie Gralow. 

Kara said that she didn't understand why Genentech sent the application to the FDA in the first place, that they (the Hutch and Dr. Gralow) only needed IRB approval to give me the drug.

At this point, I was incredibly confused. I talked to Dr. Lee about it, but didn't mention it on my blog because I didn't know much about the IRB folks. (Also, I was afraid Genentech would find a way to deny me the T-Drug, which is keeping me alive, please remember.)

I'm going to look the IRB up--they have a Web site--and write about them as soon as I have time.

5. So, who was right in all of this? Kara.

6. She told me something else that both Genentech itself and the FDA got wrong--I did NOT get into the same trial as I was in before on expanded access. I got into a trial that SCCA/the Hutch still had open.

This was an EXTENDED ACCESS (note the difference--expanded access, extended access) trial of T-DM1, Phase II, that had only had one remaining patient in it. I could not have enrolled in this trial earlier because it was closed to new patients.

But the Hutch and Dr. Gralow had to keep it open as long as even one woman was enrolled who was benefiting from the drug. What did that cost Genentech? We will probably never know.

So there is a weak sense of ethics in the clinical trial world. (I mean Genentech and the FDA here, not Julie Gralow.) Or maybe it's the law, and they hate having to follow it. 

This one patient, after quite a period of time, had disease progression, so Julie found another drug for her that is working. She doesn't live in Washington, so she has gone back to her "home oncologist" to get her new drug.

I was admitted to the T-DM1 extended access trial. The only reason it was still open was that a woman from Genentech, who is Kara's "monitor" for T-DM1 trials, had not yet had the time to come to Seattle and formally close the trial. This involves some review of the records and data and so on.

If this monitor had come out a month ago and closed the trial, I would be out of luck.

Unbelievable, huh?

If you, my readers, feel like e-mailing any of these people and expressing your outrage, please do so.

Genentech's CEO:  clark.Ian@gene.com 

FDA's Commissioner: Margaret.Hamburg@fda.hhs.gov

Dr. Terry Rugg at Genentech: rugg.terence@gene.com

 Dr. Richard Pazdur, FDA's director of the Office of Oncology Drug Products: pazdurr@cder.fda.gov

FDA's Deb Miller: deborah.miller@fda.hhs.gov

Genentech's Dr. Sandra Horning: horning.sandra@gene.com 

Please do not e-mail Kara, Dr. Julie Gralow, or Dr. Doug Lee to tell them how wonderful they are. Let's not clog up our friends' e-mail boxes. I will send all three of them the link to this post, so they will know. 

If you--anyone--thinks I have made a mistake in this post, please leave me a polite comment below telling me so.  

@ Jeanne Sather 2011. 

Photo credit: @ Andrea 2011. Taken about 10 days ago when we had a picnic in Ravenna Park with both our dogs. The food was fantastic, the company was even better. Yes, I am losing weight, still. More on that another time. 

 

 

 

Want Your Own Copy of 'The Remission Song'?

After a number of delays in editing and production, I was assured that the 100 DVDs of "The Remission Song" would be in my hands by Tuesday last week at the latest.

[UPDATE: They did arrive last Tuesday, only three weeks later than the deadline director/cameraman Bill Murray had agreed to, August 22.]

My metastatic breast cancer is now in REMISSION, and the film is, in part, a celebration of that.

It was also a lobbying effort to pressure the FDA to do the right thing and allow my T-DM1 clinical trial to be expanded so that I could get the drug in Seattle. We posted a piece of the film on YouTube for that purpose: My Message on YouTube

The first copies will be mailed out--by me and any helpers I can draft--starting Wednesday a week ago. These will go to those of you who have already ordered them, the people who gave money and time to the project, and everyone who appeared in the film.

The singers and dancers include friends, neighbors, and fellow travelers in the Cancer World. Most of the singers and dancers each belongs to two out of three of those categories, although none of the younger members, such as Megan and Maya, belong to the cancer group, thank goodness. 

Then there are the still photographers, Steve and Monica, and a few other people whose names are in the credits.

Both Steve and Monica donated their time to my project (I was expecting to pay them), so they should have been listed in the "benefactors" section as well as as still photographers. (Another change to make .)

No catering firm to thank, that was 21-year-old Megan and Younger Son. Megan did a great job shopping for fuel to keep the singers and dancers happy, and dragging it all to the park, with Younger Son's help, and setting up a "craft services" table. 

If you would like a DVD of the film, please order it soon. I only ordered 100 copies to start, although of course I can always order more if it is a runaway success in the Cancer World, or so I thought. 

At this point, I have only 35 to 40 DVDs that are not spoken for. If you want one, please click on the button below and pay either through Paypal, or with cash or a check. 

If you have ordered one and paid for it. Do not worry. I have you on a list and the DVD will be on its way as soon as possible. Do not e-mail or call me to ask about your specific DVD. I don't have the energy to read or follow-up on those messages. 

If that makes you uncomfortable, please e-mail and tell me so. I will happily send you a refund and sell the DVD to someone who really wants it. 

I had planned to order a second 100 to 200 DVDs, and would like to do that now. However, there are two problems:

1. Bill Murray edited mistakes INTO the DVD. Those must be corrected before I have another batch duplicated.

2. I asked Bill to turn over the "work product" that he has and which is necessary for me to make the changes that are his fault (and any other typos I spot while copyediting it once again).

First, Bill said that work product was HIS intellectual property. Note that my personal copyright is all over the DVDs. Anywhere Bill added the name of his business with a copyright mark is an error. 

I will remove his marks, and, if he fusses, I will sue him and he will pay the costs of fixing the errors out of the money I've already paid him. 

Most recently, in an e-mail he sent me over the weekend, Bill says he will give me back my copyrighted work product, if I pay him an additional $300. No time to go into the ins and outs of that one right now, but I will tomorrow. Short answer: Not paying this guy a dime more.

My plan for Monday, two days ago, was to get on the phone and find an intellectual property attorney who would work for me either pro bono or for a percentage of what we recovered. In addition, this attorney must enjoy this type of battle. S/he must enjoy taking the ridiculous, rude, and untrue things Bill said to me in e-mail and requiring that Bill read them out loud in court.

I'm going to enjoy this. 

Cost: $15, which includes shipping and handling. That's if you still want to order.

 

You must also understand that I am flat on my back at NW Hospital, waiting out the after-effects of a spinal tap. These DVDs will not be shipped until I am back home, which could be a week or two. If that is going to bug you, please don't order one.

In addition, do not e-mail me to suggest that my sons or my friends or someone could go to my house and handle the mailing of the DVDs.

No, they cannot. They will not. I have to be involved, and, in any case, mailing DVDs, even in return for money, is about No 10 or 12 on my personal to-do list.

No. 1: Prolonging my life. Could this be the time I die? Yes, it could. My doctors--up to three or four specialists plus Dr. Lee--do not know what is wrong with me. My very poor balance is so-far unexplained, as is my extreme pain in the back of my neck and my T-spine.

No. 2: Saving my house from foreclosure by CitiMortgage. More on this soon, but Kevin LINK has refused to negotiated via e-mail, even though I could handle that right now. Citi doesn't want to put anything in writing. 

They want to be able to say, "Our Kevin never said that ..." Or, "Kevin may have said that, but ..." Or, Ms. Sather may have interpreted it that way, but what Kevin really meant to say was ... "

Citi's lawyers could be quite persuasive in a court of law unless we (Kevin and I) negotiate by e-mail. You know, I may need a hotshot real estate/mortgage attorney here. I think I'll call Seattle U's law school and ask for help, once I get these more pressing problems under control. 

 If you think I am being too hard on Bill, or you are a friend of Bill's who wants to tell me off no matter WHAT Bill did, I suggest you wait. 

Tomorrow, if my medical schedule allows it, I will be posting more details of what he has said, done, and threatened. He has done and said all of these things in e-mail--NOT a very smart guy--so I will support my points with Bill's own words. 

However, if you feel the need to bash me in an e-mail or comment, this is how it will play out.

Option 1: If you criticize me or tell me off using profanity or rude language--

    A. Your post will not be approved.

    B. I will save your post, along with your name and e-mail address, and post them to my blog. I will include some or all of the profanity or criticism you used. My readers will take care of you. 

Option 2: You comment on this situation before reading tomorrow's post, even just to tell me what a great guy Bill is, and I will put up a post with a quote from you saying I am wrong about Bill, with your e-mail address and full name, and I will put it next to a quote from Bill that will blow your opinion out of the water.

    A. This comment of yours will also be posted with your name, e-mail address, and whatever other information I have about you.

Option 3, for cowards: You post your opinions/criticisms/whatever from a false e-mail address and I will not approve your comment or publish your e-mail. I will, however, post as much of your criticism as I choose, which some speculation as to who might have written such an unkind thing.

 

@ Jeanne Sather 2011.

Photo credit: Steve Schneider.