January 2012

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Better

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Feeling so grateful that my pain is much better today.

The prayers, the rain, the lying in bed for hours and reading and chatting with friends and listening to the cat purr… Your loving thoughts and messages. Thank you.

In the background of all that is happening this week, my dad had open-heart surgery. He came through well but is still in ICU.

I was so happy to tell my mom today that my pain was better. She has so much weighing her. My improvement helps her tremendously.

We’re all walking through the desert in Mary Janes, heads bowed and hands folded in prayer. Thankful for improvement. Thankful for all of the amazing people in my life.

Hugs,

Jenn

Photo credit: http://www.google.com/search?q=prayer+art&hl=en&client=safari&prmd=imvns&tbm=isch&tbo=u&source=univ&sa=X&ei=7HscT7mWGMa0iQL-zvnXCA&ved=0CDcQsAQ&biw=480&bih=269#i=8

My procedure went well, whenever that was. What. Three days ago? But when I woke from it, the pain was there, intensified. It wasn’t an obstruction. That was good news. But there was no real answer for the pain. That was bad news.

I was slowly, slowly, admitted to the hospital, shuttled from recovery stall to recovery stall while the people on the fifth floor prepared a room for me. Dennis stayed by my side as afternoon dimmed to evening and Deb picked up Little J and finally, when I was checked in, and sick, and head-achey, Little J was shuttled to the Salt’s.

It was a rough night of scratchy sheets and my I.V. pole beeping.

Luckily the docs were in to see me early, the young oncologist whom Dennis went to school with called the other oncologist in the City and another surgeon, and together, all day long, we talked and tried to figure out what to do.

Surgery is not an option. THAT everyone is clear about. There are just too many risks.

But what to do about this tiny area of skinny intestine that is giving me so much trouble? One of the docs says it has widened? Then why all the pain and other trouble? No one knows.

No one knows.

It’s like the question of cancer itself, and how it continues to ravage us and take down even the most formidable of its prey, and now my own uncle stricken with it again. How do we stop it?

No one knows.

How is that even acceptable in this day and age? I just can’t believe it. From the big C to my little intestine that feels like I’ve been shot in the gut.

No one knows.

And that is what I have to somehow be resigned to. Somehow.

Well thank God I am home. Rather here than there. That is for sure. THIS much I know.

The pain I can manage. The NOT KNOWING I can not. It is not okay. And that I just had to say. It is NOT okay that this disease can just rampage itself all over us and through and there is nothing anyone can do. Ridiculous. Totally ridiculous.

Hugs,

Jenn

Photo Credit

Break, Over

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This morning, Dennis and I went to the hospital near the Cancer Central so I could get my skinny intestine flushed.

The flushing is not a pleasant procedure, but we reassured ourselves with the expectation that I would at least be relieved of discomfort shortly after it was done. Hours later, I was surprised by the pain’s persistence and the call I received from the Gastro Ent.

He said the narrowing has grown smaller since August, that I likely need surgery, and that it might be a tumor causing it. This last point is highly unlikely, but the chance, slim as it might be, is out there.

Deep. Breath.

We are SO used to this kind of back and forthing that we know better than to get worked up over MIGHTS. However, surgery is another thing altogether. We haven’t had to think of this since 2008.

For now, we are taking things moment by moment. First thing is a sigmoidoscopy tomorrow morning under full sedation. Then more updates to follow.

For tonight, it’s Top Chef Texas and perhaps a fire.

Stay tuned…

Hugs,

Jenn

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Tuesday was full of information, as I’d hoped. The CT scan showed that all of my tumors are

GONE.

Dennis and I asked Doc G to read and reread the report to make sure there was no mistake. And there wasn’t. The months of Avastin and Cytoxin have worked.

There is the caveat, as Doc G reminded us, that the belly holds yards and yards of twisty-turny intestines that could be harboring something we can’t see, which could explain my strangely, slowly, creeping up CA-125, but from what they can see, all is clear.

Today I’m having a procedure to flush out the intestine that is partially blocked. Hopefully that will ease the pain that’s been searing in my side for weeks.

We’re taking a break from my Avastin in order to consider a laparoscopic procedure to try to snip the band of scar tissue that is strangling my poor intestine to the width of a dainty pinky finger.

So, yeah. That was a lot of info. To recap: 1. Clear scan 2. CA -125 up a few points (maybe from the inflammation in my belly?) 3. Belly flushed today to rid me of painful clog 4. Temporarily stopping Avastin to consider procedure to go in and snip the scar tissue that’s causing painful clog.

Phew, feels good to make a list, doesn’t it?

For those who are wondering, yes, in the time that stretches between items 3 and 4, I will be living on protein shakes and mashed sweet potatoes.

It’s ok, refer to item 1 on the list if any of this seems hard.

That’s what I’ll be doing for the near future.

Love and hugs,

Jenn

I should have posted Friday afternoon, to say that we got a “drive-by” reading of the CT scan, which showed no obstruction and “no signs of new disease,” but it’s been a difficult few days.

Though the headache and nausea have disappeared, the stabbing pain in my left side persists, and it’s really hard to believe that it’s not, in fact, at least a partial obstruction.

But this is a time of waiting, and I’ve grown used to this. I think my friends and family are getting used to it too, the not knowing, but breathing well because it is, at least, not getting worse.

I’m looking forward to Tuesday when, I’m hoping, we’ll have more news. Hopefully we’ll have a radiologist’s read on the CT scan, as well as a comparison to the last one, to see how the tumors are faring. Not well, I hope. I will also have my latest CA-125 result.

In the meantime, a book, as usual, has taken it’s place in my arsenal of “things that help me through the waiting” like delicious soup (thank you Ingrid) and bouts of Words with Friends.

I just finished The Sweetness of Tears, by Sugartown’s own, Nafisa Haji:

What a beautiful read. I was truly sad when I finished the story with at least twenty minutes of good heat left in my bath tub.

“What is it about?” Little J asked the night before, seeing how enraptured his mama was by something that wasn’t Bravo.

“A lot of things. Partly about a little boy who is separated from his mom,” words which I wanted to reel back in like a poorly cast line, Little J’s face pleading with me to undo what I’d just said.

“But it’s OK. The tears between them are sweet, a sign of God, a sign that love is real and that love heals us.”

Haji says it better:

‘Those tears are good tears…tears we cry for others are tears of sweetness–to be appreciated as a sign of God’s love, and sorrow, for all of the injustice that we lowly creatures, human beings who have not yet learned to be human, all of us, inflict on one another. It is a good thing, when we cry those sweet tears, she said. It is a good thing.’

One thing I love about the novel, which traverses Los Angeles and the Middle East, from the seventies to the turn of the century, is that tears are not about loss and grief. Tears can be shed for the person who is right in front of you, for a past that is gone forever, for a part of our own human essence that thrived but now no longer has a touchstone for existence. But overall, that tears can sweeten the heart, can uplift, is what has helped me through for so long. The language in this novel has strung words, like pearls on a necklace that hung blank across my heart for so long.

I hope you get a chance to read The Sweetness of Tears.

I’ll be back Tuesday with some more thorough information, I hope.

Hugs,

Jennifer

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This is the picture that’s getting me through the morning.

I woke up with a migraine and vomiting, unsure of whether I’m experiencing a reaction to the contrast dye pumped through me for yesterday’s CT scan, or just nerves waiting for the results of the test. Either way, both head and stomach are currently stable as I wait for the call.

The amazing Kim, more guardian angel than nurse and Director of all things at the cancer center, managed to get me a trip through the CT doughnut very last minute AND waited for and hour past her departure time to de-access my port when the scan was finally over. In short, she made a lot of things happen yesterday. Thanks, Kim. Little J’s salute above is for you.

And then there’s Leigh, who managed a lot of back and forthing along the 101, tricky parking lots with hidden exits, and carpool lanes that made us shout, “Winning!” Leigh brings the calm and the funny in these times, and let’s not forget the stashes of car gum and barf bags. This salute is for you:

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Deb, I’m not forgetting the ride to pick up the pre-CT smoothies. You will get salutes in person from the Tiger scout across the street.

One thing that made this whole event such a community operation was that Dennis had my car as his was in the shop. Speaking of my husband, who’s cape was all a-flutter yesterday, he came home early to take the boy to his Cub Scouts den meeting and is working at home today while we wait for results.

As I was saying to Mari the other day, there are times when there is nothing holding our family back. For stretches of time, aside from some chemo appointments, we are home free, just living our lives. And then there are times when we are headed to the ER, or on pins and needles, waiting for results. There’s a Tiger salute for these times, too:

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So right now we’re on pins and needles. And in fact, some of them feel like they’re sticking out of my belly. Ouch.

I’m looking forward to the next stretch of calm, like we had over the holidays. I can get through this scary time knowing that a time of peace will follow. Just not sure what stands between us now and the stretch of peace. For today, it’s simply waiting.

Hugs,

Jennifer

Pause

The halls have been undecked. The only snow for miles sits pooled in glass globes neatly packed with stockings, light-up reindeer ears, and crocheted mistletoe doilies.

The holiday vacation was one for the records with its highs and even a few lows. But cheer reigned, and we were able to see and spend quality time with nearly everyone close to our hearts.

But now we enter that awkward time when the confetti and pine needles have been vacuumed up, and the Christmas CDs packed away. School backpacks are back out, and the list of volunteer duties and committees beckons.

Not quite in the new routine yet, but with the holidays behind us, we move forward as if in an airport: we are neither here nor there. We’ve left one place behind but have not quite arrived in another.

And the weather makes this in-between time all the more strange. We wake up to fog and frost. But that clears within hours and spring seems to have sprung. It doesn’t seem right. I need some cold, some rain, some winter weather to plant the bulbs and build a fire by.

Not that I’m complaining about good weather. How un-Californian! It’s just that things seem a little off, a little uncomfortably stalled. I can almost hear someone humming nervously as he turns the record over while simultaneously refreshing my drink.

Speaking of music, I’ve stumbled upon a tremendous talent, someone whom I predict will be huge in 2012 when her new CD Born 2 Die releases later this month: Lana del Rey.

When I first heard her song Videogames on the radio, I had to pull the car over and just let the tune envelop me. It’s a perfect soundtrack to the hazy, cold, rainless days that seem strung out ahead of us. I’ve since listened to several other of her songs and am completely captivated. It’s good music for the inbetweeness of now.

Here’s the video for Videogames. Hope you enjoy the ethereal images of old and new Hollywood as well as the lovely sound that keeps them afloat.

Until the rain grounds me, hugs,

Jenn