Wednesday, December 24, 2008

Emilie’s Passing

Emile passed away in her sleep last night. I was holding her hand as she faded away. I loved her and will miss hear dearly, but I am happy to see her free of the pain and suffering. The services will be at the Basilica of St Mary on Monday, December 29th. Visitation is at 11:00 AM and mass will follow at Noon. Emile wanted me to share the following quote after she died.

"And did you get what
you wanted from this life, even so?

I did.

And what did you want?

To call myself beloved, to feel myself
beloved on the earth."

— Raymond Carver

Post by Stephen Lemmons

Friday, December 19, 2008

the next ... and probably last ... chapter in my life

I have put this post off for a couple of days because there were important family and friends who needed to know first. And honestly, as Steve and I process the latest news, me all looped up on narcotics pain-killers, I have been at a loss for how I will write about it here.

So here it is: As of yesterday, I am officially in home hospice care. It is time for me to start preparing to die. It's so surreal. We're still trying to work through the many emotions that come from this news — sadness, fear, worry that I won't get everything done in time. And yet, there's also a sense that this final part of my journey might perhaps be one of the most amazing and spiritual times of my life.

Dr. S said the tumors in my right lung look worse — that "most of my right lung is occupied by tumor and liquid associated by the tumor." The tumors have also pushed my liver inward quite a bit. He said he didn't think any more could be done with chemo or surgery or radiation, and in the end, I think both he, Steve and me were on the same page.

Home hospice has already come in and set up a hospital bed in our room that makes my sleeping much more comfortable. In fact, I'm floored by the helpful, compassionate attitude that comes with this program. I never wanted to die in the hospital, and hospice will enable me to die surrounded by my loved ones in my home. Steve has always supported me in this, and I am so grateful.

I'll write more later. Right now, I need to go rest. Meanwhile, I will leave you with the link to my latest Catholic Spirit column, which came out in yesterday's issue. It's what's been on my mind for the past week and a half, and had I not written about it for the Spirit, I'd have spent quite a bit of time reflecting on it here. Enjoy.

Tuesday, December 16, 2008

more lung trouble

I spent most of yesterday at the doctor's and the outpatient section of the hospital. It turns out I have more fluid in my right lung (more than last time), which means more collapsed lung, which explains my breathlessness and pain in my chest and back.

Unfortunately, the fluid is compartmentalized into different pockets of my lung. The doctor originally wanted to drain a little over a liter, but he ended up getting just about a third of a liter. He wasn't sure what to do about the other sections, as the consistency of the fluid was unusual.

So I did get to go home last night (after a PET-CT scan which was already scheduled). I don't feel a whole lot better, but I see Dr. S. tomorrow, and maybe we'll learn more.

Sunday, December 14, 2008

a small miracle

Last night around midnight, I was lying in bed on my back, groggy with Vicodin, trying to fall asleep. Suddenly, in my right lung, I felt a strange little flutter, like a bubble had burst. And then ... a rush of cool air filling the lower part of my lung, the part that has barely been working, keeping me from being able to breathe deeply.

I slowly inhaled and realized that I could take a very deep breath with no pain. I lay there for 20 minutes or so, just breathing deeply and wondering what on earth had happened. Was it my acupuncture session yesterday, where she focused on my lungs and my breathing? The acupressure point around my sternum that I'd been rubbing all day? Strangely enough, in my groggy state, the first thought that popped into my mind was, "It's the collective power of all those prayers out there!" (So thank you.)

This morning, my breathing is as deep as ever. I still have the cough and get winded easily, but I'm not quite so breathless. Unfortunately, though, I am more lightheaded than ever. I am worried about that. Maybe it's my low hemoglobin level? And this morning, when I'm sitting up, there are parts of my back and shoulder that do hurt when I take big breaths. But I'm still buoyantly amazed that my lungs have decided to give me full access to air for the first time since the hospital. That is something!

Friday, December 12, 2008

how am i doing?

It's easy, when people ask, to say, "Fine," or "OK," or "Not too bad," and I suppose in social situations, those responses have to do. But in a nutshell, I'm really not doing all that well. I haven't been since I got home from the hospital.

I have had many moments of resentment, bitterness, hopelessness, anger, negativity. When I mentioned this to Dr. S., his response was to offer to prescribe me antidepressants. It's such a medical response — more pills. "There's no reason you shouldn't be as happy as you can be," Dr. S. said in his always-calm voice, and I had to say, "Are you kidding? Can't you understand why a person in my situation right now might not be happy?" He just repeated the offer of antidepressants. I'd rather not go there for now. But I do think some counseling might be helpful. (Edited to explain: I am not opposed to antidepressants when they are the most appropriate treatment for depression, such as when it's clear there is a brain chemistry imbalance; but first I'd like to explore the possibility that my current frame of mind is situational, based on specific circumstances that I might be able to work through in therapy.)

My right lung is not working very well, after what it went through at the hospital, and my breath is really shallow and fast. I get winded at the slightest activity — coughing hard, walking across a room, turning over in bed. The right side of my back aches so much that I have trouble falling asleep. I have a nagging, persistent cough that is triggered just by my breathing and sometimes takes the breath out of me. These breathing problems seem to be getting worse, but I'm scared to call the doctor about them because I'm afraid I'll have to go back to the hospital. Even if that's for the best.

My hemoglobin level is borderline anemic, which may be one reason I'm so tired and lightheaded all the time.

I have a PET and CT scan on Monday, and while it would be officially great to learn that the last round of chemo worked, part of me secretly hopes it shows it didn't work because then I won't have to do another round of it. It was so hard, so toxic. I am still not over it, and it was three weeks ago. I don't have much of an appetite, and certain foods just don't appeal to me anymore. The next round is scheduled for next week, but I don't want to do it before Christmas. I think Dr. S. will let me postpone it. But ...

I'm hitting a wall in general when it comes to chemo. I just don't know how much more I can take. I am not a person who associates chemo with positive, tumor-killing thoughts. I saw it described in a recent newspaper article as "the scorched earth policy," and that rings true for me. I've had seven rounds of poison, and so far, it's only had minimal success. Stopping growth (or shrinking it, in one case) for a round or two but ultimately letting more new tumors slip through — tumors that are resistant to that particular form of chemo, so on with the next cocktail.

If this round is found not to have worked, the next option is Sutent, a pill form of chemo. It's been on the market for about two years, originally approved after showing success with gastro-intestinal cancers. I don't know how much success it's had with sarcomas. Meanwhile, it sounds pretty toxic. Can I handle it?

I have had moments when I just want to stop all treatment and lie down and let nature take its course.

And of course, that makes me feel like a bad mother, a bad wife. Who would willingly give up on her family like that?

But then I watch a silly-sweet movie like The Holiday, where Jude Law is a widower with two young girls, and he finds love with Cameron Diaz after thinking he'll never find love again, and it gives me this naive hope that maybe things will work out without me, that maybe I don't need to be so resistant to dying, if that's what the cards hold for me.

And I think about Matt Logelin, a flesh-and-blood widower, not some movie character, who is suffering so greatly but also surviving and, in some ways, perhaps even flourishing nearly nine months after his wife died, the day after giving birth to their daughter Madeline.

So, is it OK to give myself permission to die? Or should I keep on letting chemo drugs weaken me and make me miserable — but maybe buy some more time, maybe (though I'm doubting the odds) work a miracle? Or should I find some middle ground and take a break for a while with the intention of starting chemo again later? It's a question I really struggle with.

• • •

But I can't let the title question go without mentioning some of the things that bring me light.

Unexpected gifts, letters and cards from friends. And visits.

Hot baths, now entirely unencumbered.

I'm done with my antibiotics, and the infection seems to be gone.

My hair is still coming in. It's more than an inch long now! I actually washed it yesterday!

Books like Kitchen Table Wisdom by Rachel Naomi Remen and When Things Fall Apart by Pema Chodron, which help me delve into my suffering and negativity without judgment.

People in the medical community who actually show a human side, who look at me in the eyes and ask me how I'm doing — like they really mean it. And don't offer pills to address every concern.

A woman who comes over a couple of evenings a week to help out (play) with the boys and offer moral support, which enables Steve and me to do other errands around the house. She started out as a stranger and now is a friend, almost a surrogate grandmother to the boys. She brings cookie dough for me to make cookies with Daniel. On days when I'm feeling like a bad mother, she gives me hugs and tells me how sweet and wonderful they are, and how much she loves being with them.

My sister-in-law Sue, who takes time out of her busy family life and comes over every Monday to help me with the boys. We pay a nanny for that four days a week; Sue does it from the goodness of her heart. Her day has become so important to us, and the boys love her.

The fact that so many women I know are having babies soon. For some reason, this gives me such a sense of joy. It's a reminder of the full circle of life.

Acupuncture — the compassionate woman who administers it and the spiritual strength it gives me.

Our latest home-improvement project: a new, ultra-quiet bathroom ceiling fan and some new, professionally installed attic insulation to keep our house a bit warmer (done in tandem). Sounds super-sexy, doesn't it?

Small steps toward decorating the house for Christmas, and seeing Daniel's excitement over it.

And of course, the sweetness of the boys, and the incredible love and support of Steve, who is going out of his way to try to understand where I am these days and to give me all the space (or hugs and kisses) I need. Sometimes he just looks at me out of the blue, seeing something in me that I'm not seeing, and says, "I love you." I really was blessed with a wonderful family.

Oh — and I've been wearing this hat around in the past few days, so some part of me must be feeling feisty and fightin'. Right?

cool stuff

• Snow in New Orleans — wow! Check out a couple of cool pictures on Ray Mikell's blog. He's the friend who sent me a couple of funky wigs last summer.

• If you've been following Matt Logelin's blog, you may have done the math and figured out that his adorable daughter Madeline is just two days older than our Benjamin. And now she's standing! Way to go, Madeline! (No pressure, Ben.) But that's not the real reason to check out his latest post. I'm just so impressed at how people who are strangers to each other have come together to fund this worthwhile charity in memory of Matt's wife, Liz (who died completely unexpectedly the day after Madeline was born, if you haven't been following his story).

Wednesday, December 10, 2008

i'm free

A nurse from Fairview Home Infusion pulled my PICC line out of my arm today, so for the first time in nearly six months, I have no catheters or any type of tube or device hanging from my body. I can submerge myself completely in water. I can take a shower without having to cover part of my body with protective plastic and tape. I don't have to inject heparin into my lines every day to keep them from clogging. I can take Benjamin into the bathtub with me again!

I wasn't originally going to have it pulled. The dressing covering it had come loose overnight and had to be replaced. While I was rummaging around for some supplies, the nurse noticed that the tube had slipped out a few centimeters. (I had failed to press it against my skin after he took the adhesive off.) That pretty much decided it. "Just take it out," I said. We called my oncologist's office to make sure it was OK, then pulled it. I didn't feel a thing.

Yes, this means I'll get extra pokes for IVs and blood draws, and I may have to get another PICC line if I have another round of chemo soon. But Merry Christmas to me ... this feels good.

Friday, December 5, 2008