The Assertive Cancer Patient

Yes, I Could Die on You

Regular readers of my blog will know that last spring I began a relationship with a man I call Car Guy. 

Car Guy sorted out my 1964 Corvair's woes, caused by the previous mechanic who put the car back together wrong (a gross oversimplification, but I don't think Car Guy is reading this post), and we became close friends. We've teetered on the brink of a romantic relationship for months now, and then finally, last weekend, when we were discussing sex (Yes, I brought it up), Car Guy said: 

"Well, one of my fears is that I could come to care about you, and then you would die."

He added, "Maybe this is selfish ..."

Painful as that conversation was, it was overdue for the two of us. Car Guy has known since he met me that my cancer cannot be cured. I've talked to him about how I live with that knowledge, and I've shown him how I live with it, day to day.  

And, no, I don't think he is selfish to consider whether or not he could handle a sexual relationship with a woman who probably won't live very long.

That truth is the reason that I haven't gotten involved with anyone for years. The major reason, anyway. Sometimes I just haven't felt well enough to even want to date or have sex. 

But now I do, and I want Car Guy. 

So I wait. Car Guy has to decide for himself if he can handle this. If he wants to live in the moment with me, and be glad for the time we have together, however long it is. 

I also told him he could have a "Get Out of Jail Free" card to use if I get sicker and he feels like he can't handle it. I am sincere in making that offer. I have other people who will stay close when I'm dying.

With Car Guy, I want to live, just for today. 

@ Jeanne Sather 2008. 

 

... Feed a Cold

I woke up this morning feeling crummy, and decided I'd better cancel my volunteer gig at First Place School.

Then, as I was giving Constant, the Wonder Dog, his shower (needed since he came home from the dog ranch a week ago), I kept feeling dizzy and had to sit down a couple of times.

Now, the thing about feeling like this when you have cancer is that it's hard to tell if the problem is:

A. The cancer

B. The drugs

or:

C. Some garden-variety thing that everyone is getting.

So I waited a few hours, had coffee with a friend here instead of going out for it as we had planned, and worked on my blog for a bit. Then, sure enough, I started noticing cold symptoms. So now I can relax.

If you have cancer, you know what I'm talking about.

Now we come to the "feed a cold" part. This is what I'm eating for lunch.

It's just a package of Top Ramen (five for $1 at the QFC), dressed up with some cubes of tofu, an egg (poached in the broth), and a couple of spoonsful of miso, one red and one white. (Both kinds of miso are actually shades of brown, but in Japanese, they are red and white.)

For some reason, when I have a cold I tend to crave protein. That seems odd, but I go with my food cravings--except for the craving for a quart of green tea ice cream. I'm going to ignore that one.

The bowl is my special noodle bowl with red dragonflies painted on the side. It makes food taste better.

@ Jeanne Sather 2008.

A Melanoma Diagnosis

I woke up this morning to find an e-mail from a young woman (35) who was just diagnosed yesterday with melanoma. She had found my blog, and was writing to ask for advice.

She's the mother of four young children, and was feeling very afraid and freaked out. "I'm driving myself crazy and it's day one," she wrote. "I'm looking for some advice about how to handle the stress and worry."

Well, I don't usually like to give advice, but I couldn't ignore this one. Here's my answer.

I'm laughing, but very gently, so don't be offended. This is how I felt when I was first diagnosed--with breast cancer and then later with melanoma. Of course you're afraid. Of course you are checking every single mole! I still do that, even though my doctor also checks them every few months--but I found the first one, so I figure that I am most likely to find any more.

I have lots of moles too, and freckles, so there's a lot to keep me busy.

So, this is what I think--

This stage of cancer treatment is the worst, trust me on that. When you first find out, and you're afraid, and you are worrying about your kids, and you haven't had treatment yet.

I think the best way to deal with it is to acknowledge it. Admit that you are scared stiff. Talk about it, if that's what you want to do, or ignore it publicly, but admit to yourself that you are scared.

If it helps you to get information, I would do that, but there is lots of scary info on the Web, and a fair amount that's not accurate, so be careful.

Then, I think, you have to be gentle with yourself until you've had the excision, and don't expect too much of yourself--because this level of background stress and fear can make you really tired and unable to cope with daily life. But you won't realize that until you have a meltdown in public (done that too), so be gentle with yourself.

If the stress and anxiety don't level off once you've had the cancer removed, I would consider seeing a therapist of some kind who can help you with these issues. I've had a therapist hypnotize me and make me a tape so I could do self-hypnosis on a daily basis when I was really stressed, and I take small doses of anxiety and depression meds--they help keep me on an even keel. And I see a therapist once a week.

You can find someone who specializes in working with cancer patients--they often can be really helpful. And don't feel embarrassed about this either--lots of times people are hard on themselves when they need this kind of help, I know I was in the beginning.

I hope this helps. Please let me know how things go, and if you feel like leaving comments on my blog, I have some great folks who read the blog--many of them have cancer blogs of their own--and you'll get some great support there too.

So, readers, please chime in if you have suggestions about living with fear.

Oh, and here's something I forgot, the link to a story I wrote several years ago:

Running With Fear

@ Jeanne Sather 2008.

Keeping Secrets

Here's one secret I won't have to keep anymore: Amorette is pregnant!

Read all about it on her blog, in a post that breaks my heart even while I'm feeling such joy for her. Amorette was never supposed to be able to get pregnant, because of some heavy-duty cancer treatment at a very early age. (Radiation, age 3.)

Read: Wait, aren't I infertile?

Amorette does such a great job of feeling what she feels and then bleeding all over the page, in a way that is impossible not to empathize with.

I've known about this pregnancy for a little while, because we communicate by e-mail as well as on our respective blogs, and I was really afraid that I was going to slip up and say something in a comment that would out her before she was ready (chemo brain, you know).

So now I can relax about that.

Totally Shitty Day
Despite the beautiful weather, and the good news from Amorette, and the good news from my oncology appointment this afternoon (more on that later), I have been in a totally shitty mood all day, topped off by an upset tummy--Tykerb, lots of trips to the bathroom--and a swimmy/dizzy feeling that made me wonder if I was safe to drive myself to and from the doctor (of course, I drove).

I think I know why I'm in this mood.

One of the readers of my blog had a mastectomy this morning, and even though I only know her from the blog, it really got to me. I was right back there when I had my own mastectomy, nine years ago.

Back then, mostly, I felt numb. I walked, I talked, but I was numb. And this morning I think I was having a little sympathy numbness for my friend, who was in surgery.

I sent her some flowers, which seemed like such a small thing to do. Trite, even. (But I hope she likes them.)

I wanted to do so much more: Hold her hand. Tell her everything would be OK (even though we both know that no one knows if everything will be OK, but sometimes you just have to pretend, you know?). Tell boob jokes. Or boob-less jokes.

@ Jeanne Sather 2008.

Woo Hoo! Good News for a Change

So, I assume those of you who are also living with cancer could see through the humor in my most recent couple of posts to the fear lurking in the background.

A Freudian Morning?

No Break for Me

After all this drama and two weeks of anxiety, not to mention numerous scans of pretty much every part of my body, I saw The Bone Guy this morning.

He was running an hour late for my 10 a.m. appointment, which was one more hour for me to sit there and watch my blood pressure rise. (To about 150/106.)

However, he turned out to be a great guy, and I wasn't even mad about missing my lunch date with my friend Gloria, which we had optimistically scheduled for 11:30.

The really funny thing is after getting all those MRIs and CTs and PETs that I blogged about yesterday, and carrying them to him on CDs, what he wanted to see was a simple X-ray of my arm. (To add to the humor, when I told my medical oncologist a week or so ago that the arm was still hurting, I asked if we couldn't just do an X-ray to take a look at it, but he sent me for the MRIs.) Turns out, X-rays give the clearest picture of what the doctor wanted to see.

So I went downstairs and got the X-ray (15 minutes, tops) and then went back upstairs to get the good news.

The old break in my arm has healed extremely well. It's very solid with lots of bone there. The arm bone itself is crooked, because I never had it pinned when it broke five years ago, but that's no big deal. The spots in there are probably cancer, but just more bone mets like I have all over my body.

He thinks the pain and inflammation in the bone marrow got stirred up when I worked so hard on Monica's garden, because of my old injury, but that's all he thinks it is.

So we are taking a conservative approach: Wear the brace I wore when my arm broke five years ago. Take pain meds. Baby the arm.

I'll go back and see him in six weeks and we'll take another X-ray. He doesn't think we need to biopsy the spots in the bone because he is quite sure they are my same cancer, not a new one.

We can't radiate these spots, because they are right in the field where we radiated the arm before. So if the mets are big enough, then I'll go back on treatment. (Which will mean the end of my break, but I'm going to fight for that. I WANT MY BREAK.)

This may all change once my other doctors weigh in, of course, but for now this is the plan and it makes sense to me.

So of course I'm exhausted after all this worrying and trying not to worry ... I felt a burst of energy when I first got the news--that "I can take on the world" feeling, but now I'm feeling a bit tired and I have my writing workshop to teach tonight. So maybe I'll take a nap.

A P.S. Going back to SCCA was tough for me. (This doctor is at the Seattle Cancer Care Alliance, where I got my treatment until a year ago when Dr. Livingston left.) Some bad things happened at SCCA, including violations of my patient privacy by staff, and some other problems that I've blogged about a bit.

So who should I share an elevator with up from the underground parking garage? SCCA's head honcho, who is on the very short list of people I dislike intensely. It was bound to happen.

@ Jeanne Sather 2007.

Fear: The List

I live with fear. I think every cancer patient and every cancer survivor does. Ever since that first bout with breast cancer more than eight years ago, the fear has been like an alien hand, sometimes squeezing my throat, making it tough to breathe, sometimes wrapping itself around my heart.

We Americans find it somehow shameful to admit to being afraid. We don't like to read that soldiers in World War I were so afraid that they defecated in their pants before battle, as Newsweek has reported. We do our best to make the fear go away, with drugs if possible.

And it's a brave doctor who says the "F" word--fear--to a patient. Usually, it's "anxiety" that we are coping with, or "stress."

Here are my fears, large and small:

Dying, of course.

Leaving my children without a mother.

Pain.

Needles and nasty medical procedures.

Being unable to support myself, or perhaps, even to brush my own teeth. Oh, the indignity of that.

And, always, the constant fear that the cancer will stop responding to treatment and go postal on me.

This post is adapted from a longer article I wrote in 2003:
Running With Fear

@ Jeanne Sather 2007.

Soapbox No. 2: Keep Your Fear to Yourself

I've been living with cancer for a long time--eight years now. I've experienced a lot of fear during that time, but I think I've done a pretty good job of taking that fear and making lemonade out of it. I think I cope pretty well with my feelings, and I'm always available to my children, to help with whatever problems or fears they might have.

But I cannot cope with other people's fears. It's astonishing how often friends and family come to me--the person who is sick--to help them feel better about the fact that I have cancer and may die soon.

I have literally spent hours on the phone with my anxious and grieving friends, telling them that it's OK, that I will be fine . . . and when the conversation is over, I am exhausted.

An offshoot of this is telling a person with cancer all your personal cancer horror stories. Don't do this. This is unkind.

It is a common coping mechanism to automatically mention that your father or mother or brother died of cancer when confronted with someone who has the disease. My response to this is, "My father died of cancer is not a greeting."

Don't say it.

I'm not suggesting that the people who care about me don't need to vent their emotions, including their fear, but not to me. I can't handle it.

@ Jeanne Sather 2006