The path of tender heroes

Mom is out of the hospital again! She's darn happy about it, and hopes it sticks this time. Mike has been with her this week while I came to work for two days, and we're all hoping for the best.

I received this Rumi poem today from a woman who's undergoing chemotherapy, and I think it's worth sharing:

Be grateful for your life, every detail of it,
and your face will come to shine like a sun,
and everyone who sees it will be made glad and peaceful.
Persist in gratitude, and you will slowly
become one with the Sun of Love,
and Love will shine through you its all-healing joy.
This path of gratitude is not for children;
it is the path of tender heroes, of the heroes of tenderness who,
whatever happens,
keep burning on the altar of the hearts the flame of adoration.

~ Rumi

Much love,
Dave

Unbelievable

It's nice to start off these e-mails with some good news, so here goes: we can see Mom's ankles.

That's about it, I'm afraid - the rest of the news is for crap. Mom has found it a little hard to breathe since she got home from the hospital Saturday, but it wasn't too bad. Last night around midnight, however, she couldn't catch her breath, and we debated about calling an ambulance. We ended up sleeping in her living room, with her on the recliner, where her breathing was easier, and me on the sofa. As long as she was still and quiet, she was OK, but breathing was hard when she got up to go to the bathroom. This morning we called both her oncologist and her cardiologist. The cardiologist recommended a hospital stay, and told us that she has a bladder infection that needs antibiotics. (Why, I ask grumpily, did we find this out when I just happen to calling him about something else??) And the possible scenarios accounting for the breathing are too complex for me to understand, let alone recount. Her congestive heart failure wasn't primarily about the heart, after all. It had to do with the cancer and the chemicals that get released by the kidneys, that set off a hormone reaction, that flipped a switch, and pretty soon the entire electrical grid on the Eastern seaboard goes out. I don't get it, and I don't know how much I need to. Or want to. Do I sound a tad frustrated? You should see Patio!

So we went to get chemo today, which led to a quick exam, and cancelled chemo, and some tests being ordered at John Muir hospital. After an EKG and a blood test we were waiting for results so we could get a CAT scan, when the oncology office called to report an abnormality in the EKG. They said we should go to the emergency room. That was just down the hall, fortunately, so in about 5 minutes we went from eating Yoplait in the cafe to Mom being hooked up to monitors and equipment and IV in emergency, where I'm writing this. Maybe I mentioned that we're frustrated.

Mom keeps thinking that she's about to die, but I keep reminding her that her vitals are strong, and the cancer was shrinking last time we looked. None of us, including the doctors, know what's in store, but it doesn't seem likely that this latest seemingly unending drama will be the end of it all. We keep hoping that she'll stabilize and return to some level of relative health. But for some time now it's just been one event after another, broken up with some episodes of "Lost" and some meals at the Buttercup Grill.

I reminded Mom, as I try to remind myself, that what's helpful right now is to focus on right now. Not on what might happen in the future, or how it was in the past, or how it's not what you really wanted it to be now. I just overheard a doctor clarifying to a nurse that they were to use no extraordinary measures on some patient down the hall. We don't have to look very far to see people whose condition we don't envy, and to be thankful for all that we have. And it's a practice that works. I know, because I feel better now than I did when I started writing this...

I'll keep you posted. Thanks for your good thoughts for Mom.

Love,
Dave

Mom is out of the hospital

Patio was released from the hospital Saturday afternoon. We're on our way to see the oncologist now. More later...

Dave

Hope springs eternal

At long last, the doctors think they've figured out what's been causing Mom so many problems recently, and it wasn't the cancer, just like they suspected. She has a mild case of congestive heart failure. That explains a lot - the shortness of breath, the water retention, and the general lack of energy. It's entirely possible that this would have been diagnosed, regardless of the cancer, in the next few years. But it may also have contributed to her being out of breath in the original cancer-discovery incident on December 31, so it may have helped her find out earlier about the cancer.

The good news is that the heart condition can be helped to a large degree with medication. The cardiologist also said that some of her current medications are exacerbating the heart condition, so he'll adjust those quite a bit. She'll have to change her diet some, mostly limiting salt, and she's going to have to give up on dreams of a resurgent tap dancing career. (She used to tap dance at half-time at basketball games when she was a little girl!) But the diuretics are already doing their good work, and the knuckles on the back of her hand are visible again. Still no signs of her ankles! The doctors are pretty confident that she'll be out of the hospital in a few days, and that they're on to something big. How happy are we about that? I can't even tell you, nor do I probably need to.

Mike has been with Mom at the hospital since Tuesday morning while I'm at work. We are incredibly lucky that we decided to admit her on Monday, when it wasn't so clear whether that was necessary, because that night she couldn't catch her breath in the middle of the night and had an oxygen supply on for that night and the next day. If she wasn't in the hospital, it would have meant another ambulance call and all the drama and stress that goes along with that. At least I found it stressful last time!

How strange that heart failure is such good news. For someone healthy, it would be devastating. But for Mom, with pancreatic cancer, it seems like pretty great stuff. Until the next drama, which will certainly show itself one of these days, we think we know what's been causing so much grief, and the solution, relatively speaking, is near! Yay!!

If you have a Mom, tell her you love her today.

Love,
Dave

She's back on the island

In a stunning event that's shocked even her most hard-core fans, Mom got a last-minute call-back from "Survivor - John Muir."

OK, it wasn't that funny, but I'm trying. Mom got readmitted to John Muir hospital late this afternoon for a stay of indeterminate length. She sometimes feels pretty good, but other times she's gassed out just walking from the bathroom back to her chair. The doctor's are hoping that the time in the hospital will allow them to get more tests done quickly and try to figure out what's going on. As the oncologist said today as he puzzled through Mom's medical charts, "I feel like I'm missing something."

Just a few hours after my last posting on Saturday night, Mom got up at 2 a.m. and talked like she was totally fine. She said she wanted a banana, so we walked into the kitchen. She picked up a paring knife and a wide butter knife, and tried to cut the butter knife in two with the paring knife! She thought it WAS a banana, and when I said, "Mom - look at what you're doing!" it didn't register at all. Basically she was out of her head, but speaking clearly and acting otherwise like she was fine. I used the technique that the ambulance drivers used before and asked what year it is. She looked like she thought that was a ridiculous question, and answered confidently, "1980." (Later she said "Four thousand something...") I was pretty freaked out, so I had the oncologist paged, and he suggested that the combination of exhaustion and the strong pain meds could bring that on. He suggested watching her for a couple of hours, and if she didn't get better, take her to the hospital. Well, she did get better, for which I am still grateful. She got really tired of me asking what year it is for the next few hours.

Sunday night was uneventful but exhausting, since she gets up once an hour. We're both the walking wounded. If I'm tired, I can't imagine how Mom must be doing.

So the puzzle continues. The doctor doesn't think the current situation is primarily driven by the cancer, since it showed such improvement in the last tests. He said there are many intersecting conditions that could account for it, but he doesn't know yet what it is. That's the purpose of this hospital stay. Congestive heart failure or a sudden reemergence of the cancer were both mentioned as possibilities.

As we checked in to her room tonight, we saw that a young tattoo-covered guy is in the room on one side, and his speech is so slurred that I can't imagine what his condition is. On the other side is an old guy who is totally out of his head, yelling for help when he doesn't appear to need it, but clearly in great emotional distress. Then I look at Mom, with a fatal cancer, but eating a good meal and enjoying herself as she watches "Dancing With the Stars." There are people here who might look at her relative health enviously. Wow. Enjoy what you've got (even when it's tempting to concentrate on what you don't have.)

Much love,
Dave

A rough 24 hours

I just re-read the last blog post, where Mom was "feeling really good" and I just shake my head. It was true at the time, but it changes so fast it's out of date by the time the news hits your inbox.

She still has something mysterious going on that's draining her of energy, but not of fluids. She gained 20 pounds of water weight in one week and the diuretics aren't having much effect. She was home alone this last Monday and Tuesday, with friends looking in on her, but her energy was flagging. I decided to come out on Wednesday. She had a blood transfusion Thursday (that took five hours!) that by midnight had the same result as when she had it in the hospital - she was gasping with short raspy breaths and just felt miserable. I was debating about taking her to emergency, but ended up calling her oncologist at 4 a.m. for a chat. ("Hey! What's up?") He increased her diuretic dosage but mostly said watch her and take her to the hospital if it gets worse. Mom moved to her recliner so she could breath more easily, and by 6 a.m. she was feeling better and sleeping in her bed.

But neither of us got much sleep, and we were pretty shot when we went to her chemo appt. at 10 a.m. Shorter version - didn't get chemo because she's so tired, had more blood tests, a chest x-ray, and a echo cardiogram at three different locations, and didn't get home until 4. She was so tired she couldn't see straight. Mike met us at the last appt., which was great, because when we got home I took a three-hour nap, and I don't think I moved a muscle.

Tonight she's sleeping well, but exhausted just going to the bathroom, and Mike and I think we may have to take her to the hospital tomorrow unless she starts feeling a fair bit better.

I've been thinking lately how inadequate it is to talk about the death of your mother with a list of symptoms and medications and procedures. Those are a large part of what's happening, and are easier to talk about, but they so don't touch the heart of the matter. I had a dream a few days ago where I was standing in front of my mother, crying. I was crying so hard that it was physically painful - not just in my dream but in my body - so much so that it woke me up. As I was waking I couldn't tell the dream from the non-dream and I felt confused. I guess that's a hint of what I'm feeling right now about losing my mother. It's not one of those subtle dreams where you have to tease out the inner meaning! So the heart of the matter, I guess, is that it pierces the heart. And that's a painful, beautiful, love-filled and exasperating time. All swirling together, where it's impossible to pick one aspect out from the others. To simplify the experience by boiling it down to some it's-like-this phrase is to miss the subtlety and mystery and wonder of it all. It's killing me - almost in a good way. But not quite...

Too much love,
Dave

Mom gets kicked off the island

The doctors told Mom she was too healthy to be in the hospital, so they gave her the boot. So she's home, and happy to be there. We went out for a delicious breakfast today and sat outside on the patio - something she'd missed in her nine days at John Muir.

The picture is of Brooke and her Granma the day before Mom's birthday. Click for a bigger view.

Mom had her stent replaced, and the old one looked a little gunky, so that may have been the source of the infection. She's still on antibiotics, but feels really good. They gave her the week off from chemo, and we have a follow-up doctor's appointment with her oncologist on Friday. We're hoping for some good news. (Isn't that kind of a universal hope?)

Love,
Dave