chemo shmemo

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Yesterday, after chemo, we unfurled Little J’s new slip-n-slide and discovered it was a deluxe  dual-lane race slide with a checkered flag at the end. Perfect! We’d been talking about checkered flags all morning.

Yesterday’s treatment marked the turn around the half-way bend in the road. I now have more treatments behind me than in front of me. And YES!! My numbers continue to plummet. The CA-125 is down nearly another 80% at 25, which is, WNR (within normal range). Fabulous.

I still have Thursday’s dose, then two more rounds, but I can see that checkered flag already. Can’t you? Flapping in the wind, welcoming me back to remission.

The camping trip was a huge success, more on that tomorrow.

Hugs and happy weekend!

Jennifer

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Blossom Umbrella, Erte' (1892-1990)

Alright. I’ll admit it. Sometimes it’s hard, even when overall, things are going really, really well.

Last time I was in treatment, Little J was three. He couldn’t express how he felt about what was happening to me, so when he was scared, he would hit me or refuse to leave my side. This time, he can verbalize his fear, and it comes out as anger.

“Mommy, get OUT of bed and come to the fair! Mommy, I am mad that you are sick. It is YOUR fault.”

Heartbreaking as it is, this is actually a good thing. The fact that he knows he is mad and why, and isn’t afraid to say it, means that he is processing his emotions, not stuffing them down somewhere. In these moments of fury, he’s a little storm that has been brewing and, when it finally hits, leaves you feeling relieved,  if drenched and little sad.

After his outbursts, I pull him on my lap and hug him and kiss him until his tiny fists unclench. I tell him that it’s okay he’s mad at me, that I’m sorry I’m sick, and that I WILL get better.  He presses his cheek on my forehead and hugs me, then brings me his favorite stuffed dog, ruff-ruff.

He and Dennis had an action-packed fourth-of-July weekend. They went to the Sugartown parade, the Company picnic, the fair, swimming, the neighborhood cook-out, an outdoor movie-night, even bowling. Dennis sent me pictures of  Little J having a blast: on the Finn’s float, riding a horse, on  a carnival ride, watching fireworks, and we texted constantly,  saying how much we missed each other.

I made it to the parade and the cook-out, but missed the other events. This last round of chemo, my red blood cell count was really low, so I have weakness, fatigue, and heart palpitations. I think this might be adding to my sense of vulnerability. I was going to avoid posting until it passed. But taking a lesson from Little J, I figure it’s good to get it out, to share.

Thanks for being here.

Hugs,

Jennifer

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Why so smiley? This morning, before chemo, I found out that my CA-125 is down 200 points. That’s a 25% decrease after the first round. Hooray is in order. HOORAY. The doctor who was filling in for my regular Doc G, started the conversation with, “You’re just a baby!” and “You can’t possibly be 40,” so I was already chipper when he said, “Now I have some really good news for you. This regimen is working. It is working.”

Thank God and everyone out there who is praying for me and sending good thoughts.

On top of that, chemo was a breeze with my new fancy port. I’m telling you, it’s going to be a great summer in spite of the C.

D and I got home in time to see Little J and share the news with the neighbors before J had to be ushered off to his big “Preschool Graduation Party” where there will be: a treasure hunt, a jumpy house, a candy walk (whatever that is) and pizza.

So we’re all celebrating tonight.

Oh, and my hair has begun to shed, which only means I’ll be sporting a look similar to the one above this summer. Ah well, I’d trade my hair for the news I got today, easily.

Cheers and hugs,

Jennifer

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My week off from treatment has been awesome. I’m so happy to report that about a week after the last treatment, around Wednesday, I started to feel so much better and even felt normal. One tiny setback was that the “bone crusher” marrow-stimulating shot kicked in on Wednesday making sitting or standing suddenly really painful. But that passed in a day. Since then, it’s been ahhh.

On Tuesday, Little J got to spend the afternoon with his pal Lil’ Salty.

On Friday, we had a sleepover with Princess T.

On Sunday, it was back to the fishing hole, this time with mom.

Then later that night, it was dinner and movie with Princess M.

And finally, yesterday, we went for a swim in the neighbor’s pool.

We’re packing in as much fun and together-time as we can as we have big week ahead. Tomorrow is the surgery to put in the chest port for easier administration of the chemo, and Thursday is dose 1 of round 2. Friday is Little J’s graduation from preschool, and we’re all planning to go.

Hope your week is off to a great start!

Hugs,

Jennifer

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Guess who had an amazing weekend.

On Sunday, Dennis took Little J fishing at a stocked lake north of Sugartown. J caught five fish and was beyond proud of himself.

Those cheeks are soo kissable.

I stayed home to rest and read poems by Dan Whyte, a new book Ryan sent which seemed to be written for me, for that exact afternoon.  Not just this/aromatic cup/from which to drink/but the flavor/of a life made whole/and lovely/through the/imagination/seeking its way.

Try as I did to wrap myself in the perfection of the lines, symptoms started to pile up quickly and out of the blue. I couldn’t get out of bed and just gave into the heave of it.

When the boys got home, the burst of excitement from “the catch” revived me. Little J was beyond thrilled and ready to go swimming. D took him to the pool, and they cooled and splashed for hours.

That night, as little J shoveled down pizza, D called the on-call doc. There was just too much turning toward the worst: nosebleeds, swelling belly, etc. We were ordered to the ER. Neighbor Debbie came over in her cloud pajamas (because she is an angel) and held the fort, comforting little J who was so tired from his thrilling day, but still processing that mama had to go to the doctor at night.

Hours and hours went by with blood tests and hydration and x-rays and waiting, and D telling stories of  “the catch” and trying to stay alert and focused on getting home. The news was just that the chemo is really, really taking a toll. Blood Pressure 70/55, platelets 30, etc. etc. And with the swelling and the pain, it’s just about having a cancer that takes over the belly. It’s either the chemo getting in there and working, or something else. We’re going for the former. We were released near midnight and raced home to shower little J’s sleeping cheeks with kisses.

Memorial Day was better, much better. Christina came over with magical Austrian bone soup with marrow dumplings. “This broth is my mother’s medicine.” I sipped it on the back deck while we talked of angels and the wind whirled around us. Then she cut my hair short, like last time. Really short. When she left, I felt so renewed and my spirits lifted.

After a long, peaceful nap, neighbor H invited me for tea in a new little space she created in her backyard. “A little Zen place behind the lemon tree I want to show you.” It was so lovely to just sit out there and sip some Earl Grey and smell the lemon tree flowers while she talked about her garden, her boy’s new teen-ish ways, and the coming summer.

In the evening, D made his famous ribs, and we had neighbor D and her husband T over. Ribs, the trout that J caught, and talk of easier times when D and I traveled to Australia, got engaged, and lived like hopeless romantics. Later, texting with Ms. Miller about love, I realized D and I still live like romantics, but not hopeless. Hopeful. If love is what’s needed for what’s bad to go away, then the three of us: Little J, D, and I are in good shape. In fact, we’re blessed.

Dennis’s mother, who passed away on Memorial Day when D was eighteen, would be so proud of her son, the way he cares for his family, the way his heart is so open. The way he draws such good people into his life. The way his son beams and beams with inner light.

A memorable weekend. Difficult and full of blessings at the same time.

Hugs,

Jennifer

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From Felicia Cago's blog

I’ve been craving bones, unbeknown to me.

I’d been dreaming of the perfect bowl of pho since chemo last Tuesday and then again last night, after round two. When a friend asked what pho was, I discovered it’s a Vietnamese bone soup. When pho broth is prepared traditionally, chicken bones are boiled and browned for hours, leeching valuable minerals from the marrow right into the broth.

I’ve also been craving bones unbeknown to me. Last night I thought of the amazing chicken-bone soup my friend Amy made me back in 2008. I swear the stuff is magical. You stir in a little sherry so it goes down smoothly, and voila: rosy cheeks and a happy tum replace vampire jowls and a bloated, empty stomach. Lucky for me, as I write this, Amy is brewing her magic broth for me just across Sugartown.

But my strange craving is also being fed by Ms. Miller who, totally unaware of my osteo-obsession of late, cleaned, dried, and giftwrapped a sweet package of tiny chicken wishbones and sent them winging my way. When I unwrapped them, James held one up and asked, “What is this?”

“A talisman,” I answered. I’m going to make a mobile of sorts from the wishbones, but first maybe dip them in glue and cover them in what, glitter? sugar? tiny white feathers? A wishbone mobile. A talisman for the strength of bones and good luck. Little perches where angels can alight in the night, while we sleep.

So Doctor G met with us yesterday morning before treatment, and the whole bone theme came into sharper focus. None of this is any coincidence, it turns out.

“So the marrow of your bones is very sensitive. Very sensitive. Your white cell count was blahdy blah, and one week later it is now blahdyblah. That means your risk for infection is really high. But we need to move forward with treatment, so you’ll get a shot of Neulasta tomorrow which will stimulate your sensitive marrow to make more white cells. Which you will feel. Because of your sensitive marrow. Do you remember if you could feel it last time?”  “Yes, we call Neulasta ‘the bone crusher’.”

The very good news is that there is a ‘bone crusher’ shot. I can’t help feeling how grateful I am that I can continue treatment in spite of my sensitive bones, that they can just use the ‘bone crusher’ to boost my marrow and keep going. It’s a blessing.

And the day in the chair yesterday? It wasn’t a breeze. I always say it was a breeze, because it usually is! But this time it was not. My veins(!) it seems, have also developed a sensitivity to the chemo, as well.  Stingy, achy, burny, two different tries of two different veins, and finally got it working pain free. Phew.

Toward the end of the day, my favorite nurse came in and she and D and I talked about having a port put into my chest so they can leave my poor veins alone. It’ll be like Iron Man’s, but no light, and off to the left, near my collar bone, smaller, and more discreet. It’ll be under my skin, no tubes coming out of it, just a little bump under there like an extra bone, or a secret power.

So now, we get two weeks with no chemo. Just us, the bone crusher, my bone soups and the making of my wishbone mobile. Then the port goes in if my white cells are up,  on Wed June 10th, then chemo again on the 11th.

After treatment, D and I drove home in the rain last night,  processing all this. The good, the difficult, the amazing care we get from all our doctors and nurses. We wondered if Little J was doing okay with neighbor D who had graciously picked him up from school and taken him that afternoon. We’d heard she was going to take him out with Little T.  And just as we were thinking of them, neighbor D sent us this picture:

Driving the Cart at the Grocery Store

It was perfect timing.

Hugs and healthy bones and smooches to you,

Jennifer

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The weekend in the trenches is best left un-discussed. Let’s just say if discomfort is any indication, the ditzels are turning to empty, burned-out craters. But thanks to D, who did EVERYTHING this weekend while shouldering a rucksack of concern the size of Montana, Little J had an awesome weekend.

Ice cream Friday (above) was followed by Hot Tub Saturday:

and Gardening-with-Daddy Sunday:

We are hanging onto these sweet smiles while battening the hatches for dose two tomorrow.

Hugs,

Jennifer

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image from from surflikeagirl.net

The sun’s out today, which puts a smile on all our faces. Also, the pain and nausea mean that stuff is working. The pain means the ditzels are getting annihilated, and the nausea means the chemo is doing its thing. Thank God D was here to dash out and get the strong nausea drugs so I could eat yesterday.  It was a long and hazy day fueled by saltine nibbles and an “America’s Next Top Model” marathon.

By the afternoon I felt swell enough to watch little J and his friend we call ‘Lil Salty, tear up the driveway on their scooters while I sat and had tea with Salty’s mom.

In the evening, I had an email from my big brother. It said, “You can do this.”

I felt a quickening when I read this. The same sentiment, coming from everyone around me, takes on a certain added umph when I hear it from him. In fact, I feel a few more ditzels perish as I read it again.

When my brother says I can do something, there is a mandate, a no-other-option implied. Like when I was ten and he finally agreed to let me skate with him at the skate park. I was not to embarrass him by wimping out. I stood at the lip of the concrete bowl, my tube socks pulled up to  my knees, my glasses, braces, scraggly hair: embarrassment enough. The concrete slopes rushed up at me.  And off he went, smiling, laughing, tucking his body, and with a little swagger, assuring me it was the easiest thing imaginable. And then I followed. I did it.

Or the time we kicked on our boogie boards way too far out, past the coral barrier, toward the “really big waves” on Oahu. “We’re too far! We have to go back,” I’d yelled, barely audible across whitecaps, salt on my lips.

“The only way in is to ride one. I’ll get this one. You take the next. You can do it.” So I did. There really was no other option.

Or the time we floated in the blazing sun down the American River for hours. Two skinny, tanned teenagers in bathing suits on inner-tubes. Not. A. Care. Floating.

After too long of a while, I realized how far we’d have to walk back in bare feet along the brambly side-water, in the fading sun. In the land before cell phones.

“Whatever. You can do it.” And I did.

Not to say I wasn’t terrified, hurting, and sometimes a little mad. But I just did it, because he said I could, and because there never was another option, except maybe to sink into a puddle of tears and defeat. Instead, I just pushed on. As a consequence, I felt stronger in myself and trusted him more.

I like to think of this challenge as no different, though he’s not going first to show me how laughably easy it is. I know he would if he could, if not just do the whole thing for me.

Hugs,

Jennifer

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Day one went well yesterday. The six hours in the chair flew by somehow. They didn’t prep me with IV Benadryl which would normally “snow” me out for the whole time, so it was the first time I was awake, lucid, chatting with some of the other ladies. D was there, working when he could, holding my hand, making me laugh.

Later that afternoon, J got the special treat of snuggling into bed and eating a small bounty of his favorite gum-drops while listening to a “Virgil Story”. Virgil, our cat, gets up to lots of adventures while little J is asleep and at preschool, so each morning, he gets to hear about the adventures as I piece them together from the best of my recollection. The adventures often involve the other animals and children in the neighborhood, flying beds and play structures, and lots of good vs evil. Yesterday morning, there’d been no story as I had to leave early. Thus, the afternoon gumdrops and story in bed. Luxurious. Virgil was in attendance to confirm each twist of the plot with a purry nod.

Speaking of Virgil, Little J has been building ever-more comfortable sleeping spots for his beloved cat, right by his food bowl. Protection and comfort seem to be the themes of the project. The boy loves his cat.

Virgil can enter through the port hole on the left and is kept warm by a friend-made quilt for Little J.

Hugs,

Jennifer

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Vintage McCall's pattern

The last time I posted here, my CA-125 (the blood marker for Ovarian Cancer) was up to 19, from its usual awesome 3. Anything above 35 is bad, but for ladies who are in remission, single digits is the goal.

Last week, we found out my number is 353. Yikes.

D was in Europe on business when I emailed him the news from the parking lot of the doctor’s office. It was one a.m. where he was, so I knew it would be about five hours before  I could talk to him. I felt like I needed that much time to gather the strength to hear his voice on the other line, to tell him we had to start chemo again.

I drove the twenty minutes home thinking about how I was going to break the news to my mom who was at home with little J. I couldn’t think of the right words. As it turned out, I didn’t need to say anything. She knew the minute I walked in the door, as moms do. We sat down at the table and looked at each other in shock. The same table, by the way, where she helped me with my math homework, served our family the best dinners imaginable, and planned my birthday parties. We cried a bit, discussed logistics, then got dressed up and took little J out for a burger at our local favorite pub.

While we’d been talking, D’s Blackberry had beeped him late at night in Stuttgart. He packed and gotten in a cab. Before we’d walked out the door for Finn’s Pub, his assistant had gotten him on the next flight for SFO. (Thank you forever, Amy.)

Since then, I have been scanned (again!) and am now assuredly visible from space: a warbly green radioactive glow in the outline of a woman’s body, her two hands held by the bravest guys on the planet, an army of friends and family behind her.

The scan showed a little tumor on my left lower inner side and a “sprinkling” of ditzels of disease on my lower inner right side. The pain is worse than when I was first diagnosed for some inexplicable reason, and the rogue cells are more aggressive than they were the first time, which is hard to fathom given how fierce they were before.

But, as Ms. Miller says, they are a house of cards waiting to be toppled. Treatment starts tomorrow. I’ll be getting a powerhouse combination of cisplatin and gemzar. I’ll get another dose the following Tuesday, a week off, then start again. This will repeat for six to nine sessions, depending on how quickly the house of cards falls.

I know. I can’t believe I’m typing these words either. But here is the silver lining (and it is a thick and shiny one). Because of my BRCA-1 gene mutation, the combo of chemo drugs I’m getting has a very high chance of working. In my mind, it will absolutely work and has, in fact even started to work. The rogue cells are shaking in their boots and stomping in protest. Also, it’s not going to be cold and flu season. And finally, we are all determined to have a lovely summer in spite of this slight inconvenience.

We won’t be setting up a CaringBridge page. We’ll be posting here about our lovely summer: swimming lessons, trips to the beach, and with occasional updates on that other thing.

Love and hugs,

Jennifer

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