Letting Our Friends Know about Graham's Cancer

We struggled with when and how to tell friends about Graham's cancer. Graham doesn't want people to treat him differently or think of him as sickly, but at the same time, we don't want to present a false front to our friends. Here's the email we sent:

Hello Friends!

We hope you are doing well.

It's been a while since we updated you in much depth on our latest California adventures. We wanted to let you know that we've hit an obstacle in the road of life that we hope will be just a large puddle that we need to slowly but steadily wade through, rather than a giant sinkhole.

Shortly after we moved to California two years ago, Graham was diagnosed with cancer. He was told he had a slow-growing kind of leukemia called CLL, and that he should "watch and wait" before getting any treatment. He felt pretty good, continued to work and ride his bike 100 miles a week, and even completed the 400 mile Ride Across Utah.

Because the cancer didn't really affect his life in a significant way, we didn't tell very many people about it, other than immediate family. Graham didn't want people to worry when he was feeling basically very fit.

But then a few months ago, very suddenly, his spleen became huge and he developed tumors all over his body, and it was determined that he actually had non-Hodgkins Large B-cell Lymphoma.

My spleen is thiiiis big.

At Stanford Hospital's Cancer Center, he received treatment with a drug made by Genentech (the company Graham works for) called Rituxan, along with chemo (the CHOP protocol).

Immediately, his spleen reduced in size and his tumors went away. He felt soooo much better and was able to breathe, eat and walk normally again. Yay!

Unfortunately, after a short while, some of the tumors came back, so it was determined that the treatment had helped, but not enough. Two weeks ago, the doctor told Graham that he needed to take six months off from work to concentrate all his energy on getting well.

Now he is going through a more rigorous chemo treatment called ESHAP that is taken along with Rituxan. It requires that every 3 weeks, Graham goes into the hospital for 6 days to get chemo through a continuous IV drip. It's not painful, but it does do a number on his digestive system for about 10 days, and it's a long time to be in the hospital getting woken up every couple of hours.
Graham's beard was getting sparse, so he shaved it off.

Graham has completed his first round of R-ESHAP and the tumors have reduced in size, but not all the way down. It took about a week for Graham to snap back, but now he's feeling quite good and is enjoying gardening...



visits with friends and family...

Forsan in our front garden

Graham and his brother Gary at Filoli Gardens

Gorgeous flowers at Filoli

Time to smell the roses!Graham is also enjoying doing projects around the house, like assembling a storage shed.

We're very upbeat and hopeful, and are doing our best not to worry about bad things that may never happen.

He may have 5 more R-ESHAP treatments, and/or he may need to have some kind of bone-marrow transplant. We'll know more in about a month when the doctor reassesses his progress.
I'll keep you informed.

In the meantime, though, I know he would enjoy hearing from y'all. He loves getting funny cards or just talking on the phone, catching up with everyone, and hearing about what's new with you.

And don't worry, there's no wrong/awkward thing you could say or write. We'll just be happy to hear from you.

Prayers are certainly welcome too! For those who would like to say a Mi Shebarach (prayer for healing) for him, his Hebrew name is David ben Zev ve Leah (David, son of Zev and Leah).

Hugs,
Lee

Visitors Really Help! Graham's 1st Hospital Stay

Visits from friends and family really boost our spirits.

Forsan came from Los Angeles:

Cousins Karen and Will helped make Graham's first in-hospital chemo treatment less stressful.

To get Graham ready for the hospital, Will made breakfast, and even picked grapefruit for fresh-squeezed juice:

Graham is determined to "lick" his stubborn neck tumor:
Will beats us all at Boggle, but Graham rules the Scrabble board.

Notice the cot that Will is sitting on. Stanford lets spouses sleep in the room by providing a chair that turns into a cot. So glad I could stay with my sweetie each night!

John keeps us entertained during the long 5 day hospital stay:

Graham's brother Gary has been a constant help and companion: Don't have a photo of Gary in the hospital, but here's another one from Filoli!

Thanks to all of you who visited Graham in the hospital. It really made the time pass so much more quickly and pleasantly. It was heartwarming to us to see how many of our relatively new California friends and neighbors came to show their concern and love. Thank you so much Cary, Ella, Deborah, Wyatt, Jimmy, Dick, Wendy, Kevin, Marilyn, Norm, Harriet, Joyce, Jerry, John, Erika and Rabbi E!

Yikes...this might not be so simple!

After going away, the cancer returned in Graham's neck after the second R-CHOP treatment. We had been told that he would need five or six treatments, so we thought this was normal, that it just took several treatments to beat it down totally. When we went in for the regular checkup appointment before the next round of chemo, the doctor and nurse were very agitated and saddened to see the new growth and asked why we hadn't called them about it. They would have apparently sent him for the next round of chemo sooner.

But hey, we didn't know. They told us to call immediately if he had a fever, but not if a tumor regrew. Tumors we were used to. We were just warned about the prospect of infection, not regrowth.

Lesson for doctors: what's obvious to you isn't obvious to the patient who has never been through cancer treatment before! In all of the papers given to us about "when to call the doctor between treatments," new tumor growth is never mentioned.

Apparently the way successful treatment happens is that after the very first treatment, the cancer goes away and stays away. The remaining treatments are just to go after any microscopic spots that may remain, but it's just for good measure. 70% of non-Hodgkins patients usually go into long remissions after getting R-CHOP. Graham unfortunately isn't one of them.

Anyhow, Graham will need a more rigorous kind of chemo now called ESHAP, along with rituxan.

The doctor told him he needs to stop working for six months, because he'll have to go into the hospital for 5-6 days at a time to get the chemo, and then spend 7-10 days recovering from each round.

Needless to say, we're feeling low.

After first R-CHOP treatment...neutropenia

Just wanted to give you an update on how Graham is doing, which is GREAT.

The week after his first chemo treatment, he felt generally lousy - very tired and his GI system was out of whack. But the second and third week after, he felt fantastic. The lumps all over his body mostly faded away, and his huge spleen which had been such a source of pain and discomfort, reduced in size and doesn't bother him anymore. :-) He felt so good he went to work, and gardened on the weekends...

We went this past Friday to the doctor's. The doctor said that the chemo had lowered his white blood cell count, but it went from being too high, to being too low (neutropenia). So Graham couldn't get his second chemo treatment as planned on Friday.

Since then, he's been getting a shot every day of Neupogen to boost his immune system. Hopefully on Monday, his count will be back in the more normal range and they can give him the 2nd chemo treatment. Until the count gets back up, he's very vulnerable to getting severe infections, so he has to stay home and away from crowds/germs. But he feels great!

He is losing his hair though. I think he's going to look awesome totally bald. Since a lot of guys shave their heads these days, Graham isn't that worried about losing the hair on his head. But it is a bit startling that he wakes up with so much lost hair in the sheets around him that he has to vacuum his side of the bed every morning!

Here are some photos of Stanford Cancer Center. It's actually quite a lovely place. Beautiful flowers and artwork everywhere. Very soothing.

Here's the cancer clinic. One becomes one's cancer there. To check in, Graham has to go stand in the "Lymphoma" line.


They have lovely waiting rooms where they offer you juice and cookies, as well as a chair massage! Which is a good thing, because you often have to wait hours to see the overbooked doctors.



We've been watching DVDs lately. We liked "Juno" and "The Kingdom".

That's the latest!

We wish all the mothers a very happy Mother's Day!

And Happy 60th Birthday to Israel!

Love and hugs,
Lee and Graham

Rituxan Spells Relief After First Treatment!

Wow, what a roller coaster of a day!! All is fabulous now, but it's been a looooonnnnggg day. We didn't get home until 9:45pm, which is why we're not calling anyone, particularly folks on the east coast. Graham woke up this morning feeling really horrible because his spleen was just giving him such pain. We arrived at Stanford right on time at 8:30am, expecting to receive some benedryl, then a form of prednisone, and then 200 ml of rituxan. The steroids right away relieved Graham's pain. Yay! At this point, we thought we'd be out of there in about 4 hours.

The way too exciting part came when he got the Rituxan. We were warned that most everybody has an allergic reaction, and as soon as one starts to feel cold or hot or itchy, one should alert the nurse right away. Well, they started the IV drip and within the first 15 minutes, Graham reacted, so they gave him some more benedryl. Then they started the drip again.

And shortly thereafter, Graham started to sleep because of all the benedryl. Because he was snoozing he didn't notice that he was getting cold, and it was only when he was really really cold that he woke up. We rang the nurse, but within 20 seconds he started getting what they called "rigors". His neck looked like it had a wild, beating heart in it. And then his teeth started chattering, and then his hands, and then his whole body was shaking like in an episode of ER.

At that point, every nurse in the unit came rushing in. They had expected the first episode, and had the medicine all ready to give to him, but the second reaction was more rare apparently, and it took about 10 minutes for them to get the demerol. He wasn't in any danger, because they stopped the drip right away, but it was unsettling, to say the least, to see him shaking so badly for what felt like forever.

After about 20 minutes (10 minutes after he was given the demerol), he stopped shaking and shivering. After a couple hours of deliberating, the doctors decided to start him back on the Rituxan, but at a much slower drip, 20 ml/per hour. No more problems arose with that rate of drip. But we were there until 9:15pm. We closed down the joint!

Here's Graham "chillin":


So now we're home, and Graham is actually feeling fantastic. :-) Tomorrow we go back at 8am. He needs to get 500 ml more of Rituxan in his system and then the CHOP (chemo). Hopefully, now that his body is accustomed to the Rituxan they can put it in faster with no problems. But no doubt we'll be there until 9pm closing time again. So we'll probably not be able to call anyone until Saturday, since cell phone reception in the hospital is nil.

That's the scoop! Hope all is well in your world and that everyone is busy anticipating some yummy matzoh ball soup. And for the lucky folks in Durham - Mom's fantastic charoseths. Happy Passover in case I don't speak with you before Saturday night!!!!!!!

Hugs, Lee