April 2011

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This is going to be the longest post I’ve ever written. I realize that the only way I can feel any control over my life is to write about the scary things, in full detail. Thank you for indulging me and not judging me for that.

The hardest thing about having ovarian cancer (beside the fact that it is a chronic, life-threatening disease) is the utter lack of predictability and control that it casts over the life of its hosts and their families. One minute we’re celebrating the Morab trial’s success in pushing the disease practically back into remission, and the next minute, we’re in the ER facing a dangerous medical complication that could require surgery. There is always another shoe waiting to drop.

One thing I’ve learned by living in this state of precariousness is that, when I’m having a hard time staying positive, when I start asking myself self-pitying questions like, “How has my life come to this?”, when I start thinking thoughts that are too dark for even my best friends to hear, I have to find things to be grateful for. It’s the gratitude that saves me every time. I swear, it is. So I’m going to intersperse this post with thanks to all the people who helped get us through this latest event.

So here’s what happened:

On Wednesday night, my stomach felt like it had gone on strike; like it had just pulled down the metal shutter door and closed for business. I was up all night being sick and writhing. By Thursday morning, I’d found a way to sleep, and keep down some ginger ale and saltines.

Thank you, Dennis, for working from home Thursday and for convincing me that the end of the world (and me) was not coming.

By Thursday night, the stomach pain started again, and I knew it was going to be another night of agony. And as much as I hate the ER, I also knew I wasn’t going to be able to get through the night without IV fluids. I was already dehydrated and weak.

Thank you Debbie, for coming over at 11:00 pm to hold down the fort. Thank you for being awake when Dennis texted you because you somehow knew that something was wrong. Thank you also for saying, “Take all the time you need.” I know that you would have said that even if you’d known I was going to be gone for three days.

When we got to the ER, we were the only ones in the waiting room, so I got into a room quickly, but somehow, we had a team of nurses who seemed terrifyingly inexperienced. I was vomiting uncontrollably (sorry for the visual) and in agony, but it still took ONE FULL HOUR for someone to get the IV fluids, anti-nausea meds, and pain meds going.

Thank you Dennis, for not leaping across the room at the nurse who inserted the needle into my chest port then accidentally pulled it right back out again. And again, when she tried to start an IV in a vein in my wrist, totally missed, but jabbed the tubing in anyway.

Also, thank you God for not listening to me in that very same moment when I gripped the wall with my free hand and wished for a quick, painless death.

Once the IV was started, things got much, much better. The vomiting stopped (TMI?), the pain eased up, and the testing began.

Thank you ER doctor and Dennis for talking me into another CT scan. I refused at first because I’d just gotten one three weeks earlier and didn’t want the radiation. But the ER doc, the oncologist on-call, and Dennis knew there was something very wrong and that we had to figure it out. So I agreed to get rolled through the white donut once again.

After the scan, I somehow fell asleep, then woke up to the ER Doctor telling me that I had a blockage in my small intestine. Some scar tissue had caused a kink in the gut and nothing was getting through. Thus the pain. And the other stuff.

Shortly after the diagnosis, several doctors and a surgeon appeared in my room and began to prepare me for the possibility of having surgery to fix the kink if it didn’t work itself out on its own.

Thank you inner-voice who knows all, for telling me that there was no way I was going to end up having surgery, that it was going to work itself out, and I would be fine. I believed you. And, as always, you were right.

It was 6:30 am by the time I was settled into a room on the surgical unit. Dennis went home so he could be there for Little J when he woke up.

Thank you Little J, for being my brave boy and trusting daddy when he says everything is going to be okay and that mommy is fine.

After Little J was at school, Dennis came back to spend the rest of the day with me.

Thank you Dennis, for being the kind of guy who likes to play Boggle and watch old Law & Order episodes, and hold my hand, and kiss my forehead and make me laugh with your corny hilarious jokes. And thank you friends on Facebook for all your well-wishes and encouragement. And thank you all my lovely friends for checking in.

When it was time for Dennis to leave my side to pick up Little J from school and bring him down for a visit, I started to worry about how the little guy was going to react when saw his mama in the hospital bed. I seriously started to think I should get up, shower, get dressed, and sit upright in a chair. I thought it would be better to look like I was simply having a nice visit: enjoying the view and watching TV.

But I was so tired. I was that kind of tired that weighs your head to the pillow like a shot put on the grass.

I fell a into a deep and disorienting sleep.

When I woke, I had no idea where I was, why I wasn’t at home, or why Dennis’s colleague Amy was standing at the foot of the bed with a sweet smile and loaded down with gifts.

Thank you, Amy, for showing up ten minutes before little J did, and filling the room with Star Wars toys and that amazing gift basket with the luscious hand lotion. You’re the best.

When Little J walked in, his eyes lit up like it was Christmas. It was the best way for a five-year-old to enter a hospital room. Ever. The visit was great. J opened up all the toys and lined then up on the bedside table and played with them for a long time. Then he settled into the mechanical bed with me and watched some cartoons.

Thank you, Debbie, for having the boy over for a sleepover that night, and for bringing him down for another visit the next morning. We all love you and appreciate you and your generous heart so much.

By Saturday afternoon, there was still no change in my physical condition. I still knew that I was going to be fine and not need surgery. But I was starting to get depressed. I had begun to accept the fact that I was going to miss the spring fundraiser soiree for Little J’s neighborhood school. I had been looking forward to, and working on (as much as my energy had allowed) this event for months. It was going to be a time to don my new little black dress and my fancy new wig. More importantly, it was going to be a chance to celebrate (and dance!!) with the new friends I’ve made in the PTA this year, Heather, and her parents who are visiting from England. When I realized I wasn’t going to be able to go, I was so sad. Shoulder-shaking-sobbing sad.

Thank you, Michelle, Heather, Kim, Harlina, Kris, Lannette, and Jill for bidding on and winning for me the art project for Little J’s class. I was so happy to see the beautiful canvas and your sweet note in the dining room when I got home. And thank you to whoever got me the Italy gift basket and pretty flowers from the auction, as well. It was a beautiful thing to see that pile of love greeting me when I finally got home.

The portrait collage of Little J's class is on the chair in the background. The flowers and gift basket from (?) are at the door along with Holly's cake.

But I’m ahead of myself.

On Saturday, still at the hospital and sulking because I had no promising signs of improvement, I decided a visit from Jo and Paul (who were visiting from Australia) and Little J’s Uncle John and Aunt Eddy would help cheer me up. I was right. It did. There is nothing like simply sitting in the presence of family and friends to make a girl feel good, no matter what is going on. And thank you, Eddy for the pretty necklace, and Jo, for delivering my new wig to me along with the prettiest tulips I think I’ve ever seen. I hope we’ll see you and Paul back in Sugartown soon.

Pretty tulips in the background, pretty flowers in striped can from Ann in the foreground. Bedside cheer.

Saturday night, Dennis and I decided that he should go home to be with Little J when he woke up on Easter morning.

Thank you, Debbie for having J over with the girls for ice cream cones while the Easter Bunny got all the supplies for a great morning of egg-hunting and surprise-finding. And thank you, Easter Bunny.

Back at the hospital, Mari arrived Saturday night. Boggle, laughter, crying, TV, and chatting filled the evening.

I had just read my friend Sarah’s blog post about how she had decided to stop treatment for her ovarian cancer, even though it meant she would probably not live much longer. I was shocked. Sarah is a few years younger than I, has two little boys, and has been the one I email for inspiration and tips for keeping in shape and staying positive. But treatment had stopped working for Sarah and she wanted to take control of her destiny and “go out” on her own terms, not wasting away in pain and weakness.

Thank you, Mari, for reading Sarah’s post, admitting that it scared you, and still being able to listen to me say how much I empathize with her decision, as utterly heart-breaking as it is.

And thank you Mom, for all the calls and prayers and Geoffrey and Holly for praying, too and for everyone else who was praying and who refuses to give up on me. Your prayers were answered.

When I woke up Easter morning, I knew that something had changed for the better. I knew that the kink had undone itself. And then we had proof. I started drinking fluids. By noon, I was eating oatmeal. By four o’clock, I got the okay to go home.

We were elated. It was the best news imaginable. It was a little hard, I’ll admit, to accept the fact that the ordeal was ending. But then a great wave of relief hit all of us, and we finally, finally, exhaled.

Dennis and little J finished their game of basketball-on-the-wall while I showered and got ready to leave.

I had my IV detached, my hospital bracelets snipped off, and we packed all the love and well-wishes into the trunk.

And then it was off to the East Bay to John and Eddy’s house for Easter dinner. Although I could only eat half of a smashed potato, I was so glad to be with family on Easter, and to know that all was back on track.

Aunt Eddy, Little J, and Storm Trooper

On the way back to Sugartown that night, I thought about the other patients that I’d seen on the surgical unit as Mari and I took Lois (the IV pole) for walks up and down the hallways. They looked worse off than I did because they’d had surgery. They moved slowly, as though each step hurt. They held the railings and winced as they limped along. But I envied them. I did. Their ordeals, though difficult, will end. This medical event for them will eventually fade into the past, and they can get on with their lives and enjoy the freedom and grace of not always waiting for another shoe to drop. But I can’t leave this behind me. If follows me everywhere (like Lois!).

Someone once asked me, “When is it going to stop being about the cancer, Jenn? When is all that just going to be behind you?” I would love to have answered, “In two months. Or six. Or a year.” But it’s always there. And I’ve found a way to bounce back from medical ordeals like the one we had this weekend, though this time it might take a little longer than usual. Dennis and I will find our way back to being happy that it’s spring time, happy that summer is coming and that ultimately, I’m doing really, really well.

As we drove home, I realized that, though I’d gone only five hours without being a patient, I needed to start mentally preparing myself for chemo the next morning at 8:30 am.

I looked at the lights on the Richmond Bridge and listened to Little J breathing quietly in the back seat. Dennis stared ahead as he drove, pushing back his own fatigue, as always. I could barely see what lay ahead in the dark, but I knew that San Quentin was somewhere on the left and Sugartown was somewhere ahead in the distance. I closed my eyes and tried to burrow into the stillness of that moment, on the bridge, neither here nor there, but safe, still, and together with my family, and with everyone who had their hearts with me this weekend.

Hugs and Happy Late Easter,

Jennifer

Joy

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I’m in Santa Cruz for the weekend with Carolyn and Mari, enjoying some much much-needed fun and lounging with the girls. And believe me, these ladies are making sure I don’t over-exert. Example, the gals are out shopping right now for supplies while I lounge in rental cottage’s sweet little rose garden in my jammies. (It’s 2:00!) But more on this weekend later…

Since I’m missing Dennis and little J a bit, I’m looking at photos from last weekend when we decided to visit Uncle Mike in Yountville. Impromptu visits are always the best, aren’t they? Especially when there’s a sleepover. Little J savored every moment.

Juice, tulips and Bixby:

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A warm, snuggly Bixby:

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Out for a drive:

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Showing Daddy and Uncle Mike how it’s done:

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Being catered to at Redd:

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I just have to think of Little J’s toothy smile (the one that’s so big he can’t see sometimes) to remember how to savor the joy of this moment, this time with my friends, this time in the sunshine.

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Hugs,
Jennifer

Little J suddenly decided last night that he wanted to buy a fish this weekend. And he wanted to spend his OWN money and name the fish himself.

The money jar wore a seat belt on the way to the pet shop.

But first, all those coins had to be converted to dollars.

And the fish had to be paid for ON HIS OWN.

It’s a Chinese Fighting Fish.

He was named, Clever. It was love at first sight. Welcome to the family, Clever.

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Hugs,

Jennifer

It feels like it’s been a while since I’ve written anything or even felt the desire to. The truth is, my weekly taxol regimen has been much harder than we thought it was going to be. The first two weeks were fine, but after that, I had a week of fevers which resulted in a trip to the ER, and week of such utter exhaustion that my heart was all fluttery and my vision blurred. I was walking through Whole Foods when suddenly it felt like I was wearing someone else’s glasses. It was scary.  It went away quickly. But, still.

I’ve simply been physically and emotionally drained and too pooped to post.

But enough boo hoo.

The good news is that we know the MORAB-003 trial is working. My latest CT scan showed that the 7mm “lesion” is now 1-2 mm. And there seems to be no new activity. Whew. The other good news is that we’ll be able to lower my dose of taxol starting next Monday. I’m hoping this will mean that I won’t have to literally draaaag myself everywhere like a too-heavy back pack. I’ve also learned that sometime this summer, I’ll start getting every third week off of chemo altogether.

So, if this stuff keeps working, gets more tolerable, and allows me to have a break here and there, what else could I ask for. Hair? Who needs it when there are wigs and cool summer fedoras.

I’ll be posting again soon when I make through these doldrums.

Hugs,

Jenn

*photo credit

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