Day One-hundred-and-forty-five: Running out of time

Since I am "running out of time," I did what I normally do in those situations, I procrastinate. This means that I watched a lot of football rather than get any of my real work done. I was so lazy today that I had to turn on the furnace to compensate for my lack of activity.

Not that I only watched TV but the amount I watched didn't allow me to make a lot of progress. I did get a too wordy draft of a flyer I hope to post on my Den of Inequities tour. As substantially the only thing I got partly done today, I should post it. I did already send it by email to a few of my regular readers. Actually, by using my "family" distribution list, it may have made it to more readers than posting it here would show it to. Ah, obscurity in my Life after Layoff.

By posting it here, I'm doing something I have avoided thus far, directly posting my name. It wouldn't have been all that difficult for anyone to figure it out as several of my posted links show my name, but this is yet another line erosion. But even posting my name doesn't mean that I will be posting other peoples' names, even as my relationship descriptions get a little awkward at times. (I haven't had anyone who might be reading this tell me to go ahead and use their name.)

And now for the flyer draft:

As if cancer patients didn’t have enough to deal with, many cancers and cancer treatments cause chronic lymphedema. Many people, including some in the medical profession will tell you that there is no effective treatment. But, THERE IS!

The swelling of lymphedema can also be life threatening due to increased susceptibility to infections. However, it most often causes severe mobility issues as swelling around joints restrict their motion or the mass of the fluid that builds up cannot be easily moved with overstrained muscles. Then there is the reduced circulation that can cause other problems and pain, which is a problem on its own.

The most effective treatment, in conjunction manual lymph drainage massage therapy, is garments specifically designed for treating lymphedema and custom fitted for the sufferer. Unfortunately as many states do not recognize these garments as medical devices, many insurance companies do not cover them.

As a memorial to Marilyn Westbrook, who passed away from cancer December 23, 2007, the Marilyn Westbrook Garment Fund has been established. She also suffered from lymphedema as a byproduct of her cancer. It was so bad in her left leg that she had become bedridden. The day after she got her garment from Don Kellogg of Telesto Medtech, (Visit http://www.telesto-medtech.com/ for more specific information about their garments.); she was back up and moving around the house. What’s even better, she was able to participate in her daughter’s wedding. Read more about this story at http://www.lymphnet.org/patients/westbrookFund.htm.

The National Lymphedema Network, a 501(c)(3) organization http://www.lymphnet.org/, was established to educate the medical profession and patients that there were treatment options on dealing with lymphedema. It has expanded its charter to help provide garments to people suffering from lymphedema who could not otherwise afford them.

If the Marilyn Westbrook Garment Fund had to subsist on my money alone, the “memory” would be far too short and the help far too little. Please join me in relieving the suffering of others by donating to the fund. Help give the gift of “living” to those who need to make every moment count. Even those who are cured of their cancer cannot truly live, if they have been left with the debilitating effects of lymphedema.

Thank you,


Doyle Westbrook
Loving husband of Marilyn Westbrook
P.S. Read about Marilyn’s life as it is being written for the grandchildren she will never know at http://memories-of-marilyn.blogspot.com/.

Day One-hundred-and-forty-two: Down to a precious few

I'm not going to start trying to rhyme my entry titles, although I was pleased to realize that this one did rhyme. (Although it doesn't scan.)

Today also seemed more productive, more like Monday. While I did add a few things that I should do before I leave, I can't do most of them until next week. And "should" is a long way from "must." Of the things that truly must be done, I have only two or three on my current list that can even be done this week. One of them is print my Christmas Letter. I'm going to have to print them in small batches to make sure I don't run out of ink part way through a longer batch and ruin too many. In fact, since I need to sign them, I will be definitely be printing them no later than Friday. Right now I have 91 addresses. I may hand write one as my mailing labels come 30 to a sheet.

I tried an afternoon soy latte again but I don't think it will keep me awake tonight. I have an early day tomorrow and have to be out of here by 9:00 AM. (My early days in my Life after Layoff are nothing like my early days when I was "working for a living.") It's nice to not have to get up by an alarm clock even on my "early days."

I had a decent talk with the person who made Marilyn's last days "living" ones, allowed her to attend her daughter's wedding. He was telling me about a lymphedema sufferer that he was able to help because the patient's therapist learned of him through the Marilyn Westbrook Garment Fund. It is great that there are tangible results and that Marilyn can have this impact, touching even more lives. The founder of the National Lymphedema Network and host of the fund tells me that testimonials, from some of the people who have been helped, are going to be posted on the NLN site soon.

I think when I get back, I will need to do a picture retrospective of all the times that I took a picture of Marilyn's hand. It wasn't nearly as many times as I could have because even I gave up after a while. What I regret most is all of the pictures that I now don't have of her hand and the other pictures I then didn't take.

Day Sixty-one: Early rather than delayed

Since I didn't think that I could get this entry done before my last 24-hour Internet access period expired, or get it done in thirty minutes for $5, I was all prepared to do the delayed entry again and made the following notes to do so.

Today was the last booth staffing and the day of my speech, which I entered into my last post. I'd like to report that I made it through without crying, although my voice did break right at the end. It took a lot of practice to be able to do that. They gave me a standing ovation. The keynote speaker didn't even get that. It wasn't really what I said but rather that in a small way this helps address a great need.

But now I'd like to get back to other less tearful topics, at least to me.

The hotel room is a "comp" room, in other words the conference generated so much business for the hotel that some percentage of the rooms were available to presenters and NLN staff. For purposes of the conference, I was considered staff. It wasn't truly "free" however. The greatest expense was the valet parking. Food and then the Internet access followed. Then tips, ... You get the picture.

I'm not even considering the gas, but a portion of that should be defrayed by its qualification as a charitable mileage deduction. At least I have a good system to remember it come tax time.

But back to the room. I got a cold the very first night from the continuous running of the AC fan. I never got used to the cold water faucet turning the opposite, and wrong, direction from the hot. There was also some suspicious brown splashes on the wallpaper in the bathroom. And, while not all but the last I will say about the room, the balcony door wouldn't close when locked. (This may have been the source of the musty odor and my cold.) I didn't figure that there was any real danger from people climbing up to the sixth floor or somehow climbing around from a neighboring room or down from above so I unlocked it and closed it. By running the AC only during the day and turning the whole thing off at night, I've kept the cold from getting worse and I think the room is smelling better and drying out. It's quite humid in San Diego by the water.

What with the early start, 7:00 AM every day, and the many long days, including tonight, although I do have this break in the afternoon, and every day dressed up in a suit and tie no less, I didn't get to exercise, use my swimming suit, or even just walk around, not that walking around this close to the airport would be that much of a thrill.

Still, the people I met were great. The experience was unique and precious. This has been truly a great Life after Layoff experience. I can't help but think that it would have been much less so, if I hadn't been laid off.

Day Sixty: People who care for others

I have been thanked so many times in the last two days by people who I have to thank, and did. Most of the attendees at this conference are therapists, at least the people who came by my booth. And it does amaze me that these caring people can step into the breech time and time again, to give what relief they can, while they can. They often donate vast quantities of their time and more of their money. Some of the therapists are also sufferers. Primary lymphedema can be successfully treated and many of those sufferers have a special appreciation for the suffering of others, whether also primary or secondary, from cancer.

Several people asked about whether there were any limits on the fund, wondering whether like other sources of funding it was only available for lymphedema associated with some other primary condition, like breast cancer. While I was glad to be able to say that it is for any garment to treat lymphedema, there is a rather severe limitation: there is far more need than there are funds. To that end, I hope to start my Memories of Marilyn blog by September 20th. I'm still working on the trailer that I will put in every entry, something like my tag line, Life after Layoff, in this one. It will be a direct appeal for donations to the Marilyn Westbrook Garment Fund but the entries will be our life story more for the grandchildren she will never know.

The booth staffing went from 7:00 AM to only 4:00 PM today. This meant that I was able to go out to a local Whole Foods and have a wholesome meal. I was back in my room by 6:00 PM, working on the short speech that I am to give tomorrow. I've incorporated some of the suggestions I solicited from my family by email and made some other changes on my own. I'm including it below. The operative word is short.

There was one question that came up that I think is worth pursuing. One of the therapists who came by asked what was to be done with recycling the lymphedema garments that are no longer needed, unfortunately most of the time because their previous user has died. Marilyn's were given to a group in Oakland who know how to properly match the garments to people who can really benefit from them. As Marilyn and I found out, an improperly prescribed lymphedema garment can accelerate the lymphedema.

The speech:

My wife suffered and died from cancer. I'm not going to go into the details of why the cancer wasn't treatable but one of the side effects of her cancer was lymphedema in her left leg, particularly the upper thigh and groin. I know from her personal experience that treating lymphedema can make the immobile mobile again; treating lymphedema can make an observer a participant; treating lymphedema can take a person, like my wife, dying from cancer, from focusing on her death to being truly alive: able to participate in her daughter's wedding, able to join her daughter's new in-laws at the Thanksgiving table, able to meet her son's fiancee's mother. (My son is getting married in two weeks.)

This blessing of really living while she still had life was made possible by a lymphedema garment from Don Kellogg. Lymphedema treatment is truly a blessing. The last smile I saw on my wife's face was when she last saw and thanked Michele Coxon, her manual lymph drainage massage therapist who had dropped in just to visit. I want to extend that thanks to all of you for the care you give to relieve the suffering caused by lymphedema.

When I asked Don how I could help pass the blessing that Marilyn received on to others in her memory, he put me in touch with Saskia. I am glad to be able to publicly thank all the great people associated with the National Lymphedema Network, the members of the board, the employees and volunteers, and of course, Saskia, who made the Marilyn Westbrook Garment Fund a reality.

If the funding for the Marilyn Westbrook Garment Fund were to be left to my resources alone, the blessing would be too small and the memory far too short. This is why I am asking everyone I can, every lymphedema product supplier I can, to help extend the blessing and memory, the memory of my wife who died from cancer but was living to the very end.

Day Fifty-nine: Long day but very rewarding

I got up with an alarm clock for the first time since, well, my layoff. I had to, particularly after I was up in the middle of the night to write my "short speech" that I was asked to deliver Saturday. On top of that I had a soy latte that had caffeine, a double shot of espresso worth of caffeine. Then I had breakfast. Except for a bathroom break and a break again from 5:00 PM to 6:00 PM, I was staffing the Marilyn Westbrook Garment Fund booth from 7:00 AM to 8:00 PM. Yes, that did not allow me to eat lunch or dinner.

The talking with all the people who came by, some for longer some for just long enough to give them a sticker to show that they stopped by the booth, was intriguing. My message had three parts: Lymphedema patients need to realize that there are treatments that can dramatically improve their quality of life so much so that "quality of life" fails to adequately describe the improvement. Lymphedema therapists and other providers need to use all the weapons available to get their patients this improvement, including helping them apply to the NLN for money from the Marilyn Westbrook Garment Fund to get the right garment. And, they should encourage their more well off lymphedema patients to donate to the Fund to make sure that more people in need can start living again.

The fact of the matter is that with half the states of the United States not recognizing these garments as medical devices and insurance companies following suit, there is more need than any single person of my means can meet. A lot of contributors with my means will help people with lymphedema live rather than just exist.

A couple of people had longer conversations with me that touched on subjects that were still rawer to me than I thought they would be. One person felt moved to give me a hug three different times throughout our conversation. One person asked whether I had thought of public speaking in about a year. I am now and feeling that this may ultimately be my calling in this my Life after Layoff.

While traffic at the booth was heavy at times and never completely dried up for any major block of time, I used what gaps there were to write several topics in my Memories of Marilyn. I made such progress that I am now thinking that I have enough momentum and prepared topics that I should be able to start my blog of the same name. The document and associated blog will serve two purposes: provide a written vehicle that let the grandchildren know of the grandmother they will now never meet; and be hopefully well enough written that it will attract Internet readers who will then be inspired to donate to the Marilyn Westbrook Garment Fund to sustain its funding and help by that fund keep her memory alive.