Thursday, September 19, 2013

Spot Welding

I chose this picture after I googled "spot welding" because it was so sparkly!
You all know how much I love tools, right?  Power tools, especially?  So, I'm excited that I could make a tool reference in this update.

The MRIs of my hip and spine came back and show some edema in my left hip.  Edema is basically swelling.  The report says that the swelling could be either cancer or stress, and the only way to find out which it is for sure is to basically drill into my hip. No thanks.  So, we're going to assume its a little bit of rogue cancer that doesn't want to respond to my chemotherapy as well as the other pieces of cancer have been.

Today I had a CT scan to plan for one treatment of radiation to my hip, which I'll have tomorrow (Friday) morning.  One shot and done.  The nurse referred to it as "spot welding".  They find a little spot in the bones that is causing pain, they shoot it with some radiation, and hopefully it's all good after that.  If it works, the pain should be gone fully in about 2-3 weeks. In the meantime, I'm on crutches to take the weight off of my hip when I walk so I don't cause a fracture.

I'm always more relieved to have a plan than to be in the investigational phase, so I'm feeling some relief.  I can't help but feel, however, that we've started a new phase of my disease, where we are dealing with complications as they come up.  Up to now, it seems like it's been an all-or-nothing package. Either everything was responding or nothing was.  I'm not sure yet what to make of this new dynamic, but overall I don't like it very much.  It's really the first time I feel "disabled" by cancer and I'm not very happy about it.  However, I'm trying to focus on this hopefully being short-term and sorted out in a month or so.

In the meantime, I might start taking some of you up on those offers for help.  It's hard to make dinner on crutches and I feel bad waiting for Jason to get home to have him start dinner.  For those of you who have a vegan dish or two up your sleeve and feel like cooking, I'm sure I can find a week night where it would be greatly appreciated.

Thanks for all your hugs, texts, emails, calls, etc! And thank you to those of you who have been taking Rory to/from school when we have doctor appointments and walking our dog for me. We have an AMAZING support network of people we love!!

Sunday, September 15, 2013

Comfort In, Dump Out

Comfort In, Dump Out

From the LA Times, earlier this year.  I am copying the article in its entirety below.  The link above takes you to the original.  It's a good reference for any of us on how to manage our own emotions and comfort someone who needs it.  Plus, it is a great use of the word "kvetch" (yiddish for complain)!

Op-Ed

It works in all kinds of crises – medical, legal, even existential. It's the 'Ring Theory' of kvetching. The first rule is comfort in, dump out.

April 07, 2013|Susan Silk and Barry Goldman
When Susan had breast cancer, we heard a lot of lame remarks, but our favorite came from one of Susan's colleagues. She wanted, she needed, to visit Susan after the surgery, but Susan didn't feel like having visitors, and she said so. Her colleague's response? "This isn't just about you."
"It's not?" Susan wondered. "My breast cancer is not about me? It's about you?"
The same theme came up again when our friend Katie had a brain aneurysm. She was in intensive care for a long time and finally got out and into a step-down unit. She was no longer covered with tubes and lines and monitors, but she was still in rough shape. A friend came and saw her and then stepped into the hall with Katie's husband, Pat. "I wasn't prepared for this," she told him. "I don't know if I can handle it."
This woman loves Katie, and she said what she did because the sight of Katie in this condition moved her so deeply. But it was the wrong thing to say. And it was wrong in the same way Susan's colleague's remark was wrong.
Susan has since developed a simple technique to help people avoid this mistake. It works for all kinds of crises: medical, legal, financial, romantic, even existential. She calls it the Ring Theory.
Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma. For Katie's aneurysm, that's Katie. Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma. In the case of Katie's aneurysm, that was Katie's husband, Pat. Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order. One of Susan's patients found it useful to tape it to her refrigerator.
Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the center ring.
Everyone else can say those things too, but only to people in larger rings.
When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you're going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn't, don't say it. Don't, for example, give advice. People who are suffering from trauma don't need advice. They need comfort and support. So say, "I'm sorry" or "This must really be hard for you" or "Can I bring you a pot roast?" Don't say, "You should hear what happened to me" or "Here's what I would do if I were you." And don't say, "This is really bringing me down."
If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that's fine. It's a perfectly normal response. Just do it to someone in a bigger ring.
Comfort IN, dump OUT.
There was nothing wrong with Katie's friend saying she was not prepared for how horrible Katie looked, or even that she didn't think she could handle it. The mistake was that she said those things to Pat. She dumped IN.
Complaining to someone in a smaller ring than yours doesn't do either of you any good. On the other hand, being supportive to her principal caregiver may be the best thing you can do for the patient.
Most of us know this. Almost nobody would complain to the patient about how rotten she looks. Almost no one would say that looking at her makes them think of the fragility of life and their own closeness to death. In other words, we know enough not to dump into the center ring. Ring Theory merely expands that intuition and makes it more concrete: Don't just avoid dumping into the center ring, avoid dumping into any ring smaller than your own.
Remember, you can say whatever you want if you just wait until you're talking to someone in a larger ring than yours.
And don't worry. You'll get your turn in the center ring. You can count on that.
Susan Silk is a clinical psychologist. Barry Goldman is an arbitrator and mediator and the author of "The Science of Settlement: Ideas for Negotiators."

Stupid Hip

I can't tell you how many times in the last six weeks I've said that phrase:  "Stupid hip."

Not my spine. Not my finger.
About six weeks ago, my left hip started to hurt. Just a vague feeling that I strained my hip flexor, or it was a little tight or something.  Fast forward six weeks, and I'm writing this at 5:00am, waiting for the pain pills I've been given for my newly-diagnosed slipped disk to kick in so I can sleep. Been awake for 2 hours. I've had 2 x-rays, one MRI and have a second MRI scheduled for Monday.  I've been to the physical therapist 3 times, I'm taking steroids, wearing a super-hero-looking brace around my hips and generally worrying.

When you have bone mets (cancer that has spread into the bone, which I have), everything gets a little worrisome.  Of anything that has been going on in my cancer world, the bone mets have been a minor blip on the screen.  They were there from the start of the metastatic realization, in my lower spine, but have seemed to be very very responsive to chemo drugs and have shown indications of healing right from the beginning, so I didn't think much of them.  Honestly, in my mind I kind of thought of them as "taken care of".  And maybe they still are.  I may just have a slipped disk like any other 40-something, which can hurt like hell and be quite debilitating.  I mean, on-the-floor-unable-to-move-thinking-I-am-going-to-throw-up-from-pain-get-me-to-the-ER kind of pain (thank you for letting my kid see me like that a few days ago). Being over 40 can have its moments.

BUT, there's a chance that things are more complicated than that.  There's a chance I've got a hairline fracture in my hip due to either cancer or the (ironically) bone strengthener I get via IV every month. There's a chance new tumors have developed in my bones. There's a chance this pain is permanent, which is what really scares me.  My onc said the x-rays didn't show signs of new tumors, which is good, but my tumor markers (a blood test they run monthly) are up just a hair, where they had been going down steadily for the past six months on this new chemo until this week.  They are still at a good number, but I don't like even the tiniest change in direction.

Woman who has clearly been well-medicated for her hip surgery!  
You all know I'm a positive thinker.  When people comment on my positive attitude, I always caution, "It's easy to be positive when you feel good."  Now I don't feel so good, and I don't like it.  I'm trying to stay optimistic, but it's easier for the dark thoughts to creep in when there is pain involved.

So, now that it's 5:30am, I'm heading back to my happy land of Hydrocodone and Candy Crush, and hoping sleep comes soon.  Good night everyone!