The Assertive Cancer Patient

A Nasty Little Fact-let

Here's a nasty little fact-let that was in the appendix to the study on aspirin and breast cancer survival:

Two years is "... the average survival time for patients with stage IV breast cancer."

The source is Diseases of the Breast (third edition), by Harris, Lippman, and Morrow, 2004. 

How long have I lived since my metastasis? Eight years and counting (since late 2001). Do I know why? No, I don't, so please don't ask. 

@ Jeanne Sather 2010. 

Very, Very Married

This post was written by my friend Carrie, whose husband died recently of cancer. 

Our marriage was over long before it ended. 

Or did it end long before it was over?

The road we traveled together should have been much longer - decades longer, winding over sunny hillocks and through dark forests, with long vistas, snow squalls, soft purple sunsets. Our marriage was cut short by Jeff's death from cancer seven months ago.

Yet it seems I am still very, very married. I've been doing some public writing, "processing" how hard this all is: this grief thing, that cancer thing, the difficulties as well as some bits of grace and wonder we experienced the last couple of years. I have heard from not a few friends, both men and women, about their complicated relationships, breakups, doomed-to-failure love affairs, their varied sources of loneliness and strife. I 'm told I am lucky to have had this pure and simple love with Jeff for all those years, and that now it can never be sullied. You know, since he's dead and all.

Um, yeah, thanks. Except that is nowhere near the truth.

Seriously, I feel your pain. If this is you, I am not denying or belittling any of the sad changes and unfortunate decisions affecting you and yours. I am first-person-familiar with lots of it, though certainly not all.

But no long-term relationship between any two people is ever that simple.

Jeff and I met in 1978. That means we have known each other for over thirty years. We were married  nineteen years, "together" for four more before that, and good close friends for much of the decade before that. You don't spend that kind of time with anybody without coming away changed by it, as they are changed by you. There can be a lot of good times and bad packed into thirty years. And there were.

When I write now about his illness, his death, and its aftermath that our family is coping with now, I speak about love. And yes, it does come out sounding pretty pure. I've come to  think that the furnace of cancer burned away all the bullshit, all the imperfect calcifications of personality that built up on us over time, each alone and both together. What we were left with at the end of the day really was love, pure and simple.

But I distinctly remember saying to him at least once, "Just because you have cancer does not mean you are not being an asshole." Swear to God. Felt totally justified saying it too. Of course now I have no recollection whatsoever what we disagreed about that day. But I have to admit his cancer did not prevent me from slamming the occasional door.

I was a senior in high school and he was a 29 year old artisan woodworker when we became friends. Over those years we spent many, many hours together, in the sweetest, most effortless kind of friendship. When at last we shyly admitted our deeper feelings for each other, there was such a sense of joy and comfort. Here was this man I had been completely relaxed around for years; laughed and cried with; spent hours with drinking coffee or beer; reading the paper or doing the crossword; preparing and eating meals; cleaning up afterwards; driving; listening to music; relaxing; working. We had spent hours talking and hours not talking. He knew me, really knew me, the good and the bad. And still he wanted to be with me! Amazing. I am still amazed and gratified, blessed even now just to be able to think back on it.

As easily and gently as our friendship unfolded into love, our marriage was fraught with drama. The dice were loaded from the start. I had recently leaped into building a business without enough planning or capital. He was caring full time for his father, who was quite deaf and increasingly disconnected to the world by dementia. We lived in his family home, which his dad insisted on keeping as a shrine to Jeff's dead mother. And I got pregnant five weeks after our wedding. 

We loved each other deeply. But like lots of people, we never had enough money, enough privacy, enough time, or enough sleep. These things must take their toll, and they did. We always tried our best for each other, but sometimes that was just not good enough to sustain us.

My theory on the true value of marriage: no matter how bad today is, you have to go home eventually. Having lived with someone else for many years and been able to simply walk away one day, I knew how important it was to have to go home and reconnoiter, for as long as it took. The process of dismantling a marriage, a family, is purposely complicated to take enough time and preparation that maybe you might as well stay together, at least for now. Yes, there are some situations "up with which you should not put" as someone memorably said. I had my list of lines that could not be crossed, as we all do. And my file of unforgivable transgressions, built from half a lifetime of experience, is quite likely different from yours. We all look at certain couples and think, why are you still there? And we all know the truth is that only two people are in a marriage, or any long-term relationship, and all sorts of deals are privately struck; compromises and negotiations made and remade.

Jeff and I had been wallowing in deep water for a long time before he got sick. In retrospect it is easy to see now that many of the issues I could clearly delineate, and which he refused to recognize as problems, were due to the insidious progression of his illness. His inertia, excessive fatigue, what I saw as passivity and, indeed, slacker-dom were symptoms of a problem more profound than just our personality conflicts. But it took years to track down the true cause, and when we did, it was too late.

I have written before of  his illness and the toll it took on us all. Of Jeff's quiet courage with his mounting afflictions and bodily humiliations,  his grace in ramping down his expectations as the horizon lowered. Of all our blessings thrown into stark relief, the sweet gifts of friendship and family painted with bold strokes on the canvas of not-much-time. Of our joy and tears, quiet moments together magnified because we knew they were finite. There was no place then for superfluous details or grievances.  In those weeks of home hospice care and, finally, Jeff's death, our life was deconstructed down to its simplest essentials. The process of dying actually took on a stark, horrible beauty when seen through the lens of our helpless humanity, all of us able only to keep going only because we had no choice. For that I will be proud of him forever. And I will never stop loving him.

So yeah. There is the sense of having lived through this thing, seen it to its completion, the honor of knowing I have done all I could. Being able to step back and see my marriage as an astronaut sees the earth, as a whole, from a distance, it appears as something one could hold contained in one's hand, a thing of beauty and purity. But I tell you, I'd really rather have back my husband, our life together, our oh-so-imperfect marriage.

@ Carrie Stephens 2010. 

 

A Couple of Painful Subjects

This post, also, is for Julie. 

 It may not be an easy post for many of you to read, but I can't apologize for that. These are things that Julie and I--and a few other readers--are kicking around. And I'm in the mood to write about them now. 

Where I Was in November

When I came home from my trip to Omaha in early November, I knew I was really really sick. Monica and her partner picked me up at the airport, late at night, and I was so woozy I could hardly get my suitcase down the escalator. I actually threw it on the belt, and let it tumble down, because I was afraid I would fall if I tried to go down with it. 

So I was in bad shape. And I knew it, but I wasn't tracking well, either. 

The smart thing to have done, at that time, would have been to have Monica and Peter take me straight to the ER at Northwest Hospital. Instead, being me, I went home and crawled into bed for three days. I was too sick even to want to call Dr. Lee the First and tell him what was going on. 

I was so dehydrated that I could easily have stroked out or had a heart attack at that time. 

I kinda knew that, but there was this voice in the back of my head that kept saying, "And would that be a bad thing?" Because, after all, would I rather go quickly, from a stroke or a heart attack, or spend six months in a glass cage in an ICU, unable to talk--for god's sake, DON'T take away my voice--as my dear Deb did at the end of her life? 

OK, so these are the kinds of things I think about these days, and I think Julie is too. How can we not think about them?

Once I did see Dr. Lee--three days after I got home--and he admitted me to the hospital, and I got to lie back on clean sheets and let people take care of me--it was a relief. It really was. But I had about three or four serious things going on, and Dr. Lee was also afraid there might be cancer in my cerebro-spinal fluid--NOT, thank goodness--and I seriously considered that I could be at the beginning of the end. 

So I lay there in the hospital and thought about that. I figured if I was on the downward slope that I might live another year, but it would be a tough year, with an end-point out there that wasn't going to go away. My death. 

Now, I think that Julie, when she got in touch a couple of weeks ago to ask "HOW do you do it?" was where I was in November. The treatment she'd been receiving in a clinical trial had stopped working--they do that--and she was so tired from working full time or almost full time and handling a lot of family responsibilities. I think she was exhausted, and scared, and not sure what was coming next. 

And she could feel her grip slipping. Julie--I am so honored that you reached out to me at that moment. Really, I am. Because I know that feeling. You're hanging on the rope, above an abyss, and your grip is slipping. 

Do you hang on? Do you let go? Do you make a big dramatic gesture and fling yourself outward?

Where Do You Go From There?

When I got home from the hospital, I was wobbly. Wobblier than I have ever been, except maybe right after my mastectomy all those years ago. But I was pretty sure that I was not at the beginning of the end, after all. 

So I started doing all the things I know to do to take care of myself. Exercise. Good food. Love from friends and sons. And I could feel myself coming back. And the euphoria hit. 

That is what my readers have been seeing and marveling at the past couple of months. And I haven't been able to explain it very well, even in my earlier attempts for Julie. It's the euphoria of dangling on the end of that rope, with my hands slipping, and then realizing that THIS IS NOT THE TIME. 

I have more life left. Let me say that again: I have more life left!!!!! And it is sweet. 

Now, Julie has to speak for Julie. I know she was pretty much where I was last November, and I know she has to get a new treatment regimen in place, one she can tolerate. 

I don't know if Julie is at the beginning of the end.

I hope not. I know she hopes not as well. But that's what she's been facing, and I've been trying to help her with. 

OK, still with me? I know this is tough. 

This is what I believe, and this is why I'm not freaked out about the PET/CT or the chest pains or the rest of it:

I think I will live at least another two years. 

Now I could give you all my rationale for that, but I'll cut it short. I do believe that, and I believe the last year is going to be tough, it's going to be a year of dying. But I've been around people dying of cancer, people I loved, and I know how to plan a good death. So I'm not afraid of that. 

I think before that last year, I will have a fairly good year. And I am rushing to embrace that year. That's also where the euphoria comes from. I'm going to Hawaii soon. After that, I'm going to spend a week in London with my darling Younger Son. We will make memories, for both of us. 

And I will enjoy all the small, sweet pleasures of daily life that make me so happy--starting seeds. Playing with my dog. Cooking. Eating. Color. I love color now, like I never did before. 

See also: Catching Up

@ Jeanne Sather 2010. 

CT Scans and Cancer Deaths, Take Two

After reading the recent report that CT scans cause an extra 10,000 cancer deaths a year, I couldn't wait to discuss this issue with my oncologist. 

Because I get a couple of CTs a year, maybe even three, and I've been living with cancer for more than 11 years. Add in the five times I've had radiation therapy to treat cancer, plus all the other misc. exposures, and I've had a LOT of radiation. 

What Dr. Lee had to say was reassuring for me, and I hope will help clarify the issue for others as well. 

He said cancer patients and their doctors need to weigh the risks vs. benefits whenever considering ordering a scan, but for people like me, with active disease, the benefits of knowing what my cancer is up to before it harms me with a broken bone (or worse) is worth the risk. I felt the same way, so I was glad to hear him say this. 

He also pointed out that the radiation used to treat tumors gives a much higher dose than any one CT scan. And he added that he didn't think any of my recurrences were caused by CTs or other radiation, and I would agree with that too, because my tumors have always been breast cancer tumors. (Except for that melanoma on my arm, but that was caused by sun exposure.)

The people who should be concerned about the risk of more cancer from CTs and other radiation, Dr. Lee said, are people who are in remission after one bout of cancer. They will have to carefully weigh the risks of a new cancer against the benefits of careful follow-up to catch any recurrences early. Because the scans to watch for new cancer could actually CAUSE a cancer. 

That makes a lot of sense to me. 

If you are in this group--folks in remission--and are stressed about this, I would suggest talking it through with people you trust, including your doctor. Ask what research there is on risks vs. benefits for people like you. 

Here's my earlier post: CT Scans and Cancer Deaths

Support this blog:

@ Jeanne Sather 2009. 

CT Scans and Cancer Deaths

Seems to me that the cancer news recently has been rather bleak--can't we take a break from the bad news for Christmas? 

But I couldn't ignore this one, since I get several CT scans a year. The headline says, "CT Scans Can Cause Cancer Deaths."

According to the story, CT scans have more than 100 times the radiation dose of conventional X-rays, which I also try to avoid. This results in 15,000 excess cancer deaths in one year--deaths attributed to cancers caused by the CT radiation. 

Now, this is frightening. I'd like to know how to add up all the exposure I've gotten during my years of cancer treatment. But then again, what would I do with that information? I needed these scans in order to keep track of what my cancer is doing. And I needed the radiation therapy to kill various tumors. 

I will discuss the issue with Dr. Lee next time I see him, however. 

Read the story: CT Scans Can Cause Cancer Deaths

@ Jeanne Sather 2009. 

Janet Parker's Service

I've just gotten home from the memorial service for my friend Janet Parker, who died of metastatic breast cancer on November 12.

I'm having trouble writing this, so I think I'll just link to the obituary in The Seattle Times for now. 

Janet Parker's Obituary

 

 

Gloomy Sunday

I've been home from the hospital since Tuesday, but it doesn't seem like I've done much during that time. 

I spent a couple of days mostly in bed, and I really haven't had much appetite, which is not good. Still haven't unpacked my suitcase from my Omaha trip, and I have a stack of bills to pay and paperwork to sort out. 

Emotionally, I'm as strong as ever, but physically I'm kind of wobbly. 

I think the first two things I need to address are my diet and getting some moderate exercise. My friend Laurie took me to the grocery store yesterday, so I am stocked up on extra-healthy food. This is a time for great nutrition. As I write this, I am eating a bowl of made-from-real-oats oatmeal, with brown sugar and half and half. (I forgot to get raisins, and I love raisins on my oatmeal. Next time.) 

It takes 10 or 15 minutes to cook real oats, but I'm not in a hurry in the mornings. And the flavor is worth it. Not to mention the better nutrition, and no additives as there are in instant hot cereals. 

Next on the agenda is a pot of split pea soup. I plan to have that for a late lunch. Somewhere in there, I'll eat a banana cut up with good yoghurt, because my GI tract needs the good bacteria after my bout with C. diff. And of course I'm low on potassium right now, which is found in bananas. 

Tonight is my birthday dinner with my boys--my birthday is Tuesday, November 17--and they are planning to order healthy Chinese food for us. A tofu dish. A couple of vegetable dishes. And brown rice. 

Exercise 

It's hard to exercise right now, because I still feel a bit wobbly, but it's essential. The first day I was home, I walked three blocks to and from my neighborhood bookstore, and that felt like a lot. Another day, I puttered in the yard, picking up downed branches and deadheading my mums. Today, despite the gloomy weather, I'm planning to walk Connie down to the park and throw his ball for him for a bit. 

Every day for the next week or two I want to commit to walking Connie. That will help me get my strength back. 

Treatment 

Dr. Lee pointed out that we have to make a treatment decision, because my cancer progressed (the new met in my skull) when I was on the irinotecan. Of course, my hope is to get the neratinib on compassionate use grounds from Wyeth/Pfizer, and when I see Dr. Lee on Tuesday I'm going to ask him to call the oncologist at Wyeth again to see if they have an answer for me. 

If we are going to get it that way, there are masses of paperwork, which I will have to complete. Masses. It's amazing any sick person ever manages to complete this process. 

As far as the new tumor goes, I have an appt. with a doctor who does cyber-knife on Friday next week. His name is also Dr. Lee, so prepare for some confusion on my blog. I have a lot of info about both cyber knife and gamma knife to read before that appt., but the summary--from what I've read so far--is that both procedures work about equally well, but with gamma knife you have to have your head screwed into an uncomfortable metal frame with bolts going into your skull in four places. I'd rather avoid that. 

Loss of a Friend 

I found out Friday that a friend of mine who also had metastatic breast cancer has died. I had seen Janet a couple of weeks ago, and knew she wasn't doing well. In fact, I knew she had decided to stop treatment and start hospice care, but somehow I still didn't expect this news so soon. 

I've lost a lot of friends to this disease, many of them people who were diagnosed after I was, or whose cancer returned just recently, and they are gone and I am still here. I can't explain how that makes me feel ... If I figure it out, I'll let you know. 

A footnote: I've started working on my holiday jewelry designs (actually, I was designing in my head while I was hospitalized last week), and the first of these is available on my jewelry blog: Christmas Jewelry: Rocking Horse Bracelet

@ Jeanne Sather 2009. 

 

What's Your Happy Ending?

The other day I was in my favorite bead store with my bald head uncovered, and another customer walked over to me and asked me what kind of cancer I have.

I replied, "Metastatic breast cancer," to which she said:

"Oh, good thing it hasn't spread."

Hoo boy. 

Now, being the person I am, I didn't just smile and walk away. I grabbed that "teaching moment" with both hands and said, "That's what metastatic cancer is--cancer that has spread."

I won't try to describe her face. 

This isn't a post about the number of people who don't understand the word "metastatic," although I seem to have encountered quite a few of them recently, this is a post about a related topic:

People who can't deal with the fact that my story, in their eyes, has no happy ending. 

Because, after all, my cancer cannot be cured. It is going to kill me, unless I get hit by a bus or have a massive heart attack first. 

So many people, both friends and casual acquaintances, have trouble dealing with that. In the early days of my life with cancer I spent an incredible amount of time and energy dealing with friends/etc. who were all freaked out because my story doesn't have a happy ending ... cancer is going to kill me. 

I remember a very intense conversation on the phone with a friend during which I was being all reassuring, saying, "I'm not dying ..." and in my head silently adding: "this week."

Then, after more years than I care to remember of supporting other people when I was the person with the life-threatening illness, I stopped doing this. 

I no longer provide emotional support to people (except for my sons) who are having trouble coping with my situation. 

But I've done something else: I've rewritten the definition of a happy ending. To me, a happy ending is NOT being cured of cancer, because that ain't gonna happen. It's living well for as long as I have left.

Pretty simple, huh? If you're living with cancer, please write and let me know what your happy ending is: jeanne.sather@gmail.com

@ Jeanne Sather 2009.

Bringing Her Closer to God

It is my job as her only son

to take care of her,

so I refuse to let them give her pain meds. 

If anything has a narcotic, I forbid it. 

They try and fool me with fancy Latin

words or generic names

but I know how to ferret out

what's really in the drugs things like opium,

morphine and oxycodone. 

They try to convince me she is dying. 

I know that. A fool could see that.

They argue that she is in pain

but her silence belies their claims.

"See how still she is?" I say,

"Not a moan or a cry out of her."

But I know she hurts. I know it in the beads

of cold sweat under her lip

and in her fluttering heart.

It is my job

to protect her soul, to clean away

all the years of spite and neglect

to burn her pure. 

--Amy Haddad

Amy Haddad is Creighton University's director of the Center for Health Policy and Ethics, a cancer survivor, and a published poet. She was a member of a panel presentation October 27 in Omaha, Nebraska, on writing about cancer. @ Amy Haddad 2009. 

Duh!: Cancer News Headlines

I read the cancer news headlines, although all too often my response to a headline--like this one: "Depression cuts cancer survival"--is a resounding "DUH!"

Now, I do know how research works, and I know that it is dangerous to make assumptions about disease and treatment and act on the basis of those assumptions ... but is there no room in the cancer research field for common sense? 

I guess not.

In any case, researchers at the University of British Columbia reviewed 26 separate studies, which included more than 9,000 patients, and concluded: "Depression can damage a cancer patient's chances of survival."

Death rates were 25 percent higher among patients with depression, according to the study. 

Read: Depression Cuts Cancer Survival

For those of you who have been depressed, or are depressed now, and are scared silly by this study, a word of comfort: I had a major depression, for which I was hospitalized for a week, during the first year I lived with cancer. 

That was 10 or 11 years ago, and I'm still here. 

Studies like this are not predictors of what will happen to any individual person. Please remember that. 

Having said that, I highly recommend that people who struggle with depression, whether related to cancer or not, find a good therapist, as I have. 

Read more: 

Chapter 7: Depression

Chapter 8: Life on 7 North

@ Jeanne Sather 2009.