Boobs On Ice™

Living our own "Last Lecture"

I don't usually post the same general content on two blogs, but this is an exceptional time and a cluster of very visible cancer deaths seem to be all around us. So the Boobs blog readers who don't always read the Artsy Asylum Blog may have missed what I passed on there.

I wanted to share it with all of the people who I have any reach to - because I believe it's such an important thing that I need to talk about.

Here's where I am. Since December 7th 2007 I'm in and out of hospitals and clinics and medical offices more than anyone wants to be. And maybe as a part of this or because it's just who I am, it's agonizingly difficult for me to see people with cancer deteriorate and die - even those I do not know, or know only slightly. One of these, Randy Pausch, the Carnegie Mellon professor whose "last lecture" made him famous, died today almost a year after he was diagnosed with pancreatic cancer.

In the time leading up to his death Randy looked good, in contrast with Tony Snow's appearance in the months before he died earlier in July of colon cancer that had spread to first his liver and then elsewhere. Tony was gaunt and had aged twenty years in my eyes. My heart hurt to see him.

Then every weekday that Leroy Seivers of NPR writes his blog I get emotional again as I see evidence of a steady decline and that the always insightful and frank Leroy is near the end of his life, as he now weighs the pros and cons of hospice, and has a home health aide four times a week.

But as sadness envelops me, Randy Pausch simply bloomed! In the months before his death Randy was upbeat and seemed unfazed by what the rest of us are overwhelmed by.

And that gives us all something to consider.

When he gave this Carnegie Mellon commencement address in May, he had lived three months longer than the three to six months doctors had predicted, leading a friend to say he was “beating the Reaper.”

“We don’t beat the Reaper by living longer,” Pausch said. “We beat the Reaper by living well.”

My message in reflection:

• Please love others and live well while you can.
• Give generously of yourself and your spirit.
• Adopt a cause or two.
• Be present to what's happening around you and not distracted by the latest shiny thing of the blogosphere.

It's easy to be engaged by internet popularity, blog stats, being included in lists and invited to functions. Things are nice to own. But will that really matter when you face the end of the road?

Like Randy Paush who was only 47, or others we know who were suddenly stricken and died much earlier, we never know when an unexpected diagnosis - or a bus - will mark the end of our time here.

Let's make today even - simply this day - one that we'd be proud to call our last.

And then tomorrow let's get up and do it again.

And while you're doing it, just know that I love you all.

2008, The Year You Stop Thinking And Write

Each of us has our own exclusive story and no one else can tell it better. We have our unique views on life and on the lives of others.

                   Susan Scharfman

The Role of Emotional Support in Cancer Therapy

"health care providers acknowledge the role of emotional support in the treatment of pediatric cancer, and go out of their way to meet the needs of those patients.

Emotional support is presumably just as important in the treatment of adults, but there is much less of a focus on it from health care providers.

The hospital where I work is arguably the best in the country, having a strong integrative medicine program in addition to a commitment to scientific research. I know the patients here are having their emotional needs met to a greater degree than anywhere else in the country.

What I am concerned about it the lack of emphasis this aspect of treatment is getting elsewhere."

Link: Dr. Miggy 5.0

 

Learn more about providing for patient needs:

• How to Help A Friend With Cancer - Seattle Cancer Care Alliance
• relief for a neglected area of cancer care: the emotional turmoil caused by the diagnosis, symptoms and treatment of cancer
• Mundane household chores tackled by Cacer helpers
• Cancer Coaches to help patients navigate a maze of choices and chaos of decisions

Tell People About It

"If cancer has affected you personally, tell people about it. I’ve found the experience very fulfilling and comforting."

Link: Michigander in Mass. Todd Van Hoosear

I cant emphasize enough how important that is. Before I had invasive lobular breast cancer I had no idea that there could be another sign of breast cancer that did not involve a hard pea-like formation in my breast. 

But that was not the case with this disease, or other forms of breast cancer. It's not the case with other kinds of cancer either. The more I learn the more shocked I am. Yes, you can be sure I plan to write more about that soon!

In the article linked above, Todd Van Hoosear talks about the cousin he lost to cancer at a young age and encourages us to not only share what our experience has been whether personal or through someone close to us, but to also learn what we can about the disease in it's many incarnations.

Knowing the symptoms and more about the process of diagnosing, treating, and living with cancer, which affects so many of us in all it's forms is something you owe to yourself.

The Non Super-Powered Cancer Patient

"I think that the people surrounding a person living with cancer often need that person to be a superhero. They don't want to see you frightened, or sad, or depressed.

I try to deal with these expectations as best I can, even if it means that I no longer see some people, the most extreme way of dealing with them."

@ Jeanne Sather 2006 in: The Assertive Cancer Patient

About a year ago I was befriended on twitter by a group of close friends which seemed to take me under their wing. The word seems is the operative one here because this friendship only worked for them if things went in accordance with their belief systems.

One thing that was frowned on was admitting physical disability in anything other than a "fun way". As one of them said: "You'll never get a contract if you let anyone know you're sick. You have to pretend to be healthy and wealthy. Never worried about anything"

But Frankly

Even before my cancer diagnosis in December 2007, healthy was a stretch for me to pull off so that didn't fly. After some episodes of be being frank about this they departed from my support system  en-mass about six weeks after I got cancer. And I mean that literally. Within a week all were unsubscribed from my twitter, blog, you name it. One, a very prominent tweeter even dropped and blocked me on facebook without a word.

They clearly believe what they say and live their lives with FUN being the motto. And they are accurate reflections of much of the "real world" where being our real self is seems tantamount to admitting we are  worthless pieces of humanity holding a gun at the ready just to rid the world of ourselves - when in reality we're communicating a real story - without flowers and hearts and pink tennis skirts.

Because let's face it, some of us are not able to go canoing or golfing, bar-hopping or walking for that matter. It's not doom and gloom it's just reality!

This is put on a happy face thing not an unusual phenomenon. In families mothers who are getting more and more ill continue to do their multi-faceted jobs long after the children should be helping by putting dishes in the dishwasher, mixing lemonade, folding clothes and walking dogs.

The people around us can put their heads in the sand as long as we pretend we're "able".

But are we doing them any favors?

Are we doing neighbors any favors if we don't tell them we'd be glad to have them bring in dinner once a week as respite for our families? Are we doing our online friends any favors when we put on a mantle of "tough it out?"

Jeanne Sather is right though and people don't want to see us frightened, or sad, or depressed.

For the record I'm not depressed or sad so much at this point as I am frustrated and sometimes overwhelmed. Then there is pain and fatigue. That's still not under control. Some days pain is worse. But most days fatigue has me decked. Literally.

Some don't like to see that. Others dislike reality in general. But unfortunately that's what I've got.

Representing the situation as anything else seems like a lie to me.

Not to mention that it would also discount all the great stuff my twitter and blogging friends do for me, and my 22 year old daughter who has put her life on hold, is living at home and on whose shoulders falls most of the everyday "stuff." She even represents me at live events I can't get to.

I've learned to stop pretending there's nothing wrong

No longer interacting with some people as Jeanne suggests is an option. I guess education is another. But that's harder to do with some than many others. I'm lucky to mainly have friends and readers to whom I can tell the truth.

Like you.

Might Validation Help the Exhausted?

Caring for every patient to the best of our abilities does not mean sweeping under the carpet the symptom listed most troublesome by the majority of cancer patients in this country.

There's something that over half of us say is worse than the pain of cancer and treatment and recovery.

And by that I mean that yes, most cancer patients rank fatigue as a symptom more bothersome than pain.

How stunning is that?

But do you ever hear about that? There's something to simply being heard; to not being discounted. In an online issue of a journal: the Oncologist devoted to cancer-related fatigue, dated 2003 (one article you can download below) you'll find articles that make a strong plea for acknowledgment that for cancer patients fatigue is real.

2003. That's Five years ago.

Oncologists knew - or should have known - that they should be telling us it was part of cancer to feel beyond tired, beyond fatigue, and that they don't really know all that much about why it happens or what to do about it.

It wasn't simply having someone acknowledge that fatigue is a part of the cancer experience that helped me accept that I wasn't nuts, but reading what Doctor Jane Poulson said of her own cancer exhaustion at least let me say "finally!"

And one writer in the journal article makes the case that It's worse if you feel isolated in fatigue:            

"What a comfort there would have been, however, in knowing that my exhaustion was being monitored, was being taken seriously....

"I was doing my utmost--a healthy diet, meditation, counseling, as much exercise as I could manage, and lots more besides--to cope with my fatigue. I needed to know that my exhaustion wasn’t the result of a want of imagination or some other lack in me or my attitude.....

"I didn't need to hear of 'sleep hygiene' with its pejorative implications. Nor did I need pills or potions to block out the experience. I knew I needed to feel it all fully, if I were to grow through it, to turn it to my advantage. I knew I had healing resources within myself if I could just push through the fatigue to access them. What I needed was to be held safely in that place." 

Maureen Gilbert. A Survivor's Journey: One Woman's Experience with Cancer-Related Fatigue The Oncologist, 2003

Unlike Maureen, I'm not fine with feeling it fully

I'm done with the "it's just something I'll have to go through" period of acceptance. Now I'm getting mad.  So to hell with feeling it fully. In fact I've had five months to feel it - and some years before that when we didn't know what the symptoms were from. I'm beyond ready to walk out the other side of exhaustion - or to be dragged there through some miracle of modern medicine.

Not only do I believe that it's necessary for this overwhelming symptom to be recognized and brought clearly into the light of day; it's just plain time to do something about it. Recognizing it and acknowledging it is certainly the first step.

If you're a patient:

Be assured that we understand you are beyond exhaustion, that it is real we encourage you to insist to your doctor that it's a serious part of your cancer experience. If the first one doesn't do something pro-active to try to help, see another doctor. No platitudes, no sympathy, and no telling you to tough it out is going to help you feel better.

If you're a friend or relative of someone with cancer 

Please know that their symptom is not something that a nap can simply take care of, whether their doctor gets that or not. Help them find a medical professional who is able to think outside the box. Let's face it; they are likely just too worn down to do this themselves.

In the end discounting cancer exhaustion makes it worse for the person experiencing it, for those around them who are baffled by it, and for the goal of reducing the impact of the disease in every way possible.

I'm not shutting up about until somebody hears these thousands of voices repeating the same words.

I just want to feel enough energy to get out of bed to make dinner without needing a nap after doing 5 minutes of it! I'm not demanding that I be able to walk from the car to the metro train to have drinks with friends. Or push my granddaughter on the swings. Or fly to a conference with my husband. I just want to get up and go to the grocery store for bread.

This lack of knowledge about cancer exhaustion is simply not acceptable in the United States in 2008.

Related reading:

• Download: Download cancerfatigue.pdf
• Doctor Poulson: We're Not Just Tired
• Cancer Fatigue: it Feels Like Death

 

Message in a Bottle: Virtual Notes From Mom

Not being morbid, but I've done a lot of thinking - and some writing - about leaving something of myself behind no matter when it is that I die. I have cancer, let's face it. It turned out to be the invasive kind so it could appear in some new spot next year or in ten years, it's still worth thinking about if it's twenty years from now.

It would be worth thinking about if I were 30 and might get hit by a bus - or lightening - tomorrow too.

When the kids were little - mine are 22 to 37 now - I kept a jar with slips of paper in it on the dining room table & sometimes the kitchen table - sometimes even plastic easter eggs held strips of paper. I was heavily into paper.

At one time the jar had chores written on the strips, and sometimes there were surprises or rewards on the strips, but most often the jar held questions, ideas, seeds of thoughts. Often at dinner one or more of them would pull a strip of paper and talk about the question.

They were things like:

• What’s the most important thing you ever learned?
• What do you like about your toes?
• What was it like when was your grandfather was a little kid?

Funny or bonding or just designed to get them talking.

So a few years down the road - in this age of electronic everything -  there should be SOME way to get my kids a virtual version of short notes from the glass jar when they need one.  Adult kids and even grandchildren should be able to do something when they need to feel connected to me, that would get them a message - a little note - containing something I'd say to them if I were around.

You never ever know when they need one.

• Waiting in the ER for their kid's broken arm to get casted.
• After losing out on a dream job.

They just need mom - anything mom can say - not about the specific situation they face but just something she wrote for them.

Oh I could just start writing messages on slips of paper and sticking them in jars or boxes or someplace to be divided up later.. but that makes the container the symbol, not the message. So I don't want to do that.

Then comes the question of what to say.

Since I don’t know when they’ll need me, and it will have to be a system where they pull one out when needed - not one where I have something all ready for the day after their husband cheats on them - I think it would work if I could just keep the messages focused on memories of them, hopes for them, love for them, tossed in with some good old mom sayings that might make them cry or laugh or roll their eyes but will make me seem close by.

Maybe eerily so, but I hope not. Because I look at this as a project of love that could be done by anybody, at any time. I'd love to have little notes available from my grandmother to me, even now when I'm a grandmother!

But now's the time I need to call on technology. If we don’t have a magic dispenser dude to open a jar and hand the kidlets a slip of paper - and they are spread out over the US like my four - is there a virtual way to get them what we want them to have - and what they probably really need? . . I hope so.

I'll be looking for it. In fact I think it sounds like fun,

Ignatius on Responsibility and Prayer

"Pray as if everything depends on God, and work as if everything depends on you."

Saint Ignatius

Don't Wait To Start Living

"In sum, be present for what is in front of you. You ll enjoy it all more, and you ll be happier.

"These rules are all in the cancer patient playbook for surviving and thriving despite our diagnoses. Don't wait to get a terrible disease to start living like this."

Dove s Eye View: Basic rules for happiness.

Your Neighbor's Home Remedies

“If there’s any illness for which people offer many remedies,’’ says a character in Anton Chekhov’s “The Cherry Orchard,” “you may be sure that particular illness is incurable.’’…

I think Chechov, by way of his character, have a great point in this line. I've noticed that since I've gotten cancer only a few people offer me remedies.

Naturally - because the ways to fight cancer are fairly well known.

On the other hand when the complaint is fibromyalgia, a systemic, chronic, incurable illness, everybody and their brother have suggestions. Except the doctors that is. They're with me. There's no curing fibromyalgia. I'm on my own.

So here I'll try to stick with focusing on cancer, though my lousy immune system and being exhausted is what's really holding me back from being much better than I am. 

On the other hand, cancer may be easier to tackle than the other factors that make for a questionable quality of life, hard to believe as this may be.