Jill is still in the hospital

So we thought Jill might be released today, but the doctors felt there was still too much tenderness in her stomach to release her. Maybe tomorrow. She had a good if exhausting day because she had to change rooms to make way for the oncoming Swine Flu patients that are now appearing in Seattle. They closed two more schools today in the Seattle School district for a total of three now.

She is definitely up for visitors between 10AM and 4PM but she would kindly ask that you call first to check 778-8122. She had a decent evening but felt nauseous and threw up again, then felt better. Her diarrhea also is continuing. She is eating, but not very much and she is still taking IV fluids and a new med that her Infectious Disease doc recommended.

She is also a little bored (a good sign), maybe we will play Scrabble tomorrow night if she is still there.

Rik for Jill

Jill may be home Thursday!!

Jill is doing extremely well today as she continues reacting well to the therapy of antibiotics and antiviral drugs. She is now on a bigger selection of liquid diet, so she can eat a little more. She also is going to the bathroom some what more.

Today as she was getting out of bed to go to the bathroom she got all tangled up in the wires and cords and almost fell but only her just ordered lunch went flying to the floor in a zillion pieces! Well she had a good laugh and another shower of liquid food etc. She immediately had four helping people in her room helping her up and cleaning up her and the mess. So after they all cleaned up she ordered the same lunch again of yogurt and cream of wheat cereal, and the kitchen staff said I just sent that up an hour ago! So she explained the whole thing to them and laughed again. When the cream of wheat came up this time she lifted the cover and there it was with a little butter and salt and pepper under the covering. Just the way her dad used to make it for her when she was a little girl! So then she had a good cry and thought of her dad. Also very healthy and healing!

She is doing better each day and maybe tomorrow she might be allowed to come home where her three boys (two dogs and one husband) miss her dearly. Thank you for all the continued good wishes, prayers, thoughts and calls, and please understand if I do not answer everyone.

Rik for Jill

Good news--no surgery!!

It turns out no need for surgery (YEAH!!), as the doctors feel it is a really bad infection which should clear up with antibiotics and anti-viral meds. She has some color back and was hungry this morning. She is now clear for a liquid diet, jello, juice and soup. Thanks to all for the letters, calls, great positive thoughts and prayers. Unsure at this time how long she may be in the hospital still.

Rik for Jill

Jill is in the hospital

This is Jill's husband Rik, just wanting to let you know that Jill is in the hospital with a double pneumonia and an intestinal obstruction which will probably need to be removed by surgery tomorrow (?). She would really love to post but realistically she has no appetite and no energy and so has not been able to do so lately. I am thankful for all your good wishes and prayers for Jill at this time.

Rik
Jill's husband

Chemo #4 today

I haven't posted lately because I have spent most of the past few days lying on the sofa or the bed, moaning about my aching tummy. I though I could handle nausea and diarrhea, and the nausea seems to be tolerable with meds. But the diarrhea... Ugh. Even the OTC meds don't help with the belly gas and contractions. Not sure how I will continue for the next three weeks knowing this is how it will be.

But I got smart and decided I didn't feel safe driving myself anymore. Can you picture me doubled over with a belly cramp while on the highway? I don't think so! So friends are driving me to chemo each of these last three sessions.

Yesterday I was supposed to keep an appointment to be fitted for the outfit I'll wear in next week's GIlda's Club fashion show and fundraiser. At the last minute I decided I couldn't drive, so my dear friend G who had planned to meet me downtown picked me up. Karen Dannenberg of her eponymous shop treated up both with sympathy, worked quickly to find just the perfect outfit. The top is sleeveless green silk with a HUGE ruched and ruffled collar - stunning. She's matched black silk crepe pants that fit perfectly and a gorgeous necklace that I think costs more than the top and ants combined. I am sure it will be beautiful on me -- provided I feel well enough to go.

Quick post-chemo #3 update

This time I feel worse than after the past two. I can only imagine that will continue with each of the remaining three infusions in this cycle. I went to bed last night with a queasy tummy (took some zofran) -- that's the second time since Friday. Woke up with diarrhea and have no appetite or energy, so I think I will stay home and take it easy today. And this is "chemo-lite"...

Someone once said that the definition of insanity is doing the same thing over and over and expecting a different result. Well, I know in advance what the results will be but am still going back for more chemo. Maybe the definition of bravery is doing the same thing over and over even though you can predict the outcome.

Sunday post-chemo #3

I had a mostly good weekend until Saturday night. Friday was fine, came home and took my seems-to-be-usual two hour nap, then to friends for Shabbat dinner where I actually ate. On Saturday I went to shul as usual, felt fine and socialized for quite a while at kiddush after services. Took another long nap and then we joined G and her family for her 50th birthday dinner at Gaudi where again I had an appetite and enjoyed eating tapas and vegetarian paella.

But late Saturday night I began to feel a touch nauseated, so took some zofran before bed. Then I had trouble falling asleep and staying asleep. I had one hot flash at 3 AM that kept me up until almost 4, when I finally gave in and took some ativan to help me sleep.

I slept until 10 this morning, could hardly get out of bed. After a cup of ginger tea and four crackers (quickly becoming my queasy-tummy breakfast of choice), I lay down for another nap and slept until 2 PM. Have been puttering on the computer ever since, ate a bagel with some ginger ale, and generally just don't feel well.

So I am doing my best to listen to my body, do what it tells me (eat light, sleep more) and hope that this too will pass.

Third chemo dose today

Everything went well at my third dose of 5-FU, although I was a bit bored. One friend came for a visit, and I chatted with the other woman receiving treatment, but four hours in the chemo chair is a LONG time. Came home and after a massive two hour nap I am feeling pretty well.

Thursday's diarrhea responded so well to the Imodium that I then got all plugged up!

It also seems I have had little appetite lately. Food still tastes good and my sense of smell is as acute as always. I'm just not interested in food. (Very unlike me.)

Last night to celebrate the end of Passover we went out for pizza and beer and I had two bites of Rik's salad, a cup of tomato soup and one slice of pizza (plus the crust of a second slice). I think I was worried about revving up the diarrhea. For breakfast today I had four crackers spread with cream cheese. I just wasn't hungry. And I am ALWAYS hungry for breakfast.

This must be why so many cancer patients on chemo lose weight. They lose interest in food, or the side effects prevent them from eating. I guess smaller, more frequent meals should be the rule for the future.

Another side effect

WARNING: If this is TMI (too much information) for you, then you aren't prepared to help me dance with cancer. I aim to tell it like it is on this blog, and reporting on side effects will probably be more frequent now that I am on chemo.

When I started the 5 FU I was told to expect the following side effects: mouth sores, nausea and diarrhea. (The frequent burping I've experienced seems to be my body's way of expressing nausea.) Well, evidently I have begun to develop some diarrhea issues. Or it would be diarrhea if it wasn't still Pesach and I wasn't still eating matza.

The National Digestive Diseases Information Clearinghouse says:

Until diarrhea subsides, try to avoid caffeine, milk products, and foods that are greasy, high in fiber, or very sweet. These foods tend to aggravate diarrhea.

As you improve, you can add soft, bland foods to your diet, including bananas, plain rice, boiled potatoes, toast, crackers, cooked carrots, and baked chicken without the skin or fat.

WebMD says:

If you have a mild case of diarrhea, you can just let it run its course, or you can treat it with an over-the-counter medicine. Common brand names include Pepto-Bismol, Imodium A-D, and Kaopectate, which are available as liquids or tablets. Follow the instructions on the package.

In addition, you should drink at least six 8-ounce glasses of fluid per day. Choose fruit juice without pulp, broth, or soda (without caffeine). Chicken broth (without the fat), tea with honey, and sports drinks are also good choices. Instead of drinking liquids with your meals, drink liquids between meals. Drink small amounts of fluids frequently.

So I will continue to drink two quarts of water daily. Drink tea instead of my morning mocha. Pull the Imodium off the shelf. And I think I will start the BRAT (Bananas, Rice, Applesauce and Toast) diet tomorrow. Yum.

Unveiling the stone

On March 29 we unveiled the stone marking my father's grave. This ancient Jewish custom marks a transition point during the year of mourning for a parent.

My family chose this date for purely practical reasons: Rik was on spring break, so we could travel; my sister's family is going away later in the spring; and if we waited until June it would be too close to the anniversary of Dad's death. So we chose April.

On the east coast, April means spring. (Usually that's true in Seattle as well, but it's been remarkably cold and so still feels like winter here.) Daffodils are blooming. Trees are beginning to leaf out after a winter's rest. It was somehow both appropriate and incongruous to gather at the cemetery on a wet spring morning.

My rabbi had loaned copies of a pamphlet outlining the basics of an unveiling service. We read some psalms, I chanted El Maleh Rachamim (God full of compassion), we recited the mourners' kaddish. Then we removed the cloth, literally "unveiling" the grave stone.

As we each picked up a stone to place on his grave, I asked everyone to take a moment to say a few words about Dad. I'm so glad my mother took this opportunity to unburden herself of a bit of her grief. She told my dad that he'd be proud that she had picked up the pieces of her life and was taking care of things the way he'd want her to. Mom had had a rough few weeks, with their wedding anniversary in mid-March and the unveiling in early April.

I had brought two small stones from Seattle for Rik and I to place on Dad's grave. One was from the Pacific coast beach where we've spent the past few summers. And one was from our own yard. That way a bit of Seattle stays in New Jersey with Dad.

Although I didn't take a photo of the stone, it gives his names: in English, COHEN Sheldon C and in Hebrew, Shimon Shir ben Zalman HaKohen. The stone is bordered by sheaves of wheat.

In the center is a carving of birkat hakohanim, the priestly blessing. Being a Cohen was very important to my dad, and he taught me how to hold my fingers for the priestly blessing when I was very young.

And when we were finished at the cemetery, we went back to my sister's house to participate in the life-affirming Jewish ritual of eating. There were even a few onion cookies, with which we toasted Dad z"l, zichrono livracha, may his name be a blessing.