BAD, SAD news

Horrible, horrible news today. Graham won't be able to have the bone marrow transplant as planned, because test results from yesterday's PET scan show that the cancer has spread all over. It's in his skull, neck, chest, lungs, belly, spleen, under arms, thigh...

The doctors want to see if chemo will beat it back down again well enough for him to be able to get a transplant. But he's already been treated with the most powerful chemo combos without success, so the odds aren't good. The doctor told Graham to put his affairs in order because if the chemo doesn't work, he will likely have less than two months to live.

It's so unfair. Graham is such an incredibly good person, an absolute mensch, and way too young.

It's still possible that things will work out. We'll continue to hope for a good outcome, but will plan for all possibilities.

We're looking forward to having our East Coast relatives visit.

Hugs to everyone.

Visit from a friend gets Graham out of a funk

Graham, Gary and Lynn

Our friend and neighbor from Chesterfield, Lynn, came to visit Graham for several days, and it really lifted Graham's spirits. Graham has had very little energy since he started radiation, and his throat has been inflamed and so sore that it's been hard for him to swallow or eat. He's mostly surviving on Ensure drinks, pudding and ice cream. He's lost about 10 pounds, and has been feeling pretty grumpy and blue.

Lynn is a wonderful storyteller. So he regaled Graham with all kinds of interesting stories, distracting Graham from his painful throat, and motivating him to get out of the house for short jaunts.

We went to Half Moon Bay, and in our quest to find food that would be slippery (for Graham's sore throat), we ended up discovering THE BEST sushi place, called Sushi Main Street. Our area, despite a large Asian population, has shockingly bad sushi, so this was a real find. Graham was able to enjoy Noodle soup and some ice cream.

Another night we had a Slippery Feast, tasting all kinds of slippery treats from Whole Foods (aka Whole Paycheck): sesame noodles, beet salad, peas, sweet potatoes, chocolate pudding, rice pudding, curry chicken salad, split pea soup, jello, ice cream...

Graham's mood has definitely improved since Lynn's arrival. Hopefully his good spirits will continue even once Lynn has gone back home.

Bone Marrow Transplant Preparation

We met with Dr. Advani and Dr. Hancock yesterday, and they agree that Graham would benefit from a bone marrow transplant (BMT). Dr. Laporte, the transplant doctor, had been hoping to do a double transplant, but an auto transplant can't be done when the cancer is so active, so they will just do what's called an ablative allogeneic BMT. They'll give Graham high-dose chemo to blast the rest of the cancer, and then replace his destroyed stem cells with a donor's. He'll be in the hospital for about a month.

There's a decent chance that this treatment will actually cure Graham. Unfortunately, though, about a third of BMT patients don't live past a year. Each stage is fraught with various dangers.

Apparently there's a short window of time for Graham to get a transplant because his cancer is so aggressive, so thankfully his brother Gary is a match, and the transplant can take place as soon as September 11th. Gary will truly be a life-saver, because it usually takes 3-4 months to find an unrelated donor, and Graham's "window" would be closed by then.

Gary is very excited about being able to help his brother, and we are so grateful for his generosity. Gary will need to get several neupogen shots to rev up his stem cell production, and this will give him some bone pain for about a week. The actual extraction of the stem cells is painless. It's very similar to giving blood.

Prior to September 11th, Graham has all kinds of tests to get through: a PET scan, bone marrow biopsy, echo cardiogram, pulmonary something or other...the list is endless. Thank goodness Stanford is only 10 minutes away!

Gary

Radiation Rocks!

Mesh mask holds Graham's face down, to keep him from moving during radiation:





After a rocky start, the radiation therapy finally seems to be working. Graham's neck tumors are getting smaller. Phew!

Dr. Hancock amazingly got Graham started on a twice a day radiation schedule the very next day after Graham first met with him. Since Stanford is such a popular cancer center, all the machines tend to be booked, but somehow, Dr. Hancock managed to get Graham in.

After the first two treatments, Graham started to feel very bad. By Saturday night, he was running a fever, had no appetite, and no energy. We went to the Emergency Room because we thought he had an infection. They were very nice, ran lots of tests, but said there was no infection, he was fine, that the fever was likely just a result of the radiation doing its job. So we went home. But he continued to feel BAD.

On Monday, as soon as Dr. Hancock laid eyes on Graham's neck, which was very red and a little bubbly, he ordered Graham to get admitted into the hospital for IV antibiotics because he felt he had an infection either in his neck or on the skin of the neck. So apparently the ER doctors don't know squat about lymphoma or radiation.

Anyhow, after 24 hours of IV antibiotics, Graham was feeling better, though not great, and was allowed to go home with a bottle of oral antibiotics.

The next day, Dr. Hancock told Graham that he was worried because his tumors were not responding well enough to the radiation. Usually they "melt away" and Graham's were only very slightly getting smaller. So he upped the radiation doses and also arranged for Graham to get zapped over the weekend.

The good news is that we can now see a noticeable change in the tumors and Dr. Eastham (Hancock's Fellow, a new doctor) says that Graham has "turned a corner." Let's hope Dr. Hancock agrees when he sees him next!

Before radiation:

Graham's neck is really huge on both sides,
and the tumors have also puffed out his cheeks and under his chin.

After treatment, with Dr. Hancock:

The tumors on his right side are almost all the way down and the tumors on his left side are greatly reduced.

Cards are like Hugs

Thanks for all the wonderful cards! People are thoughtfully spreading the word, and Graham is getting calls and cards from friends and work associates from all the various places we've lived and worked. Graham is enjoying catching up with everyone.

Every day in the mail we get several cheerful get well cards and it's like getting a big hug.

Cousin Paul Visits; Graham and His Projects

Graham loves to do home repair projects. As soon as he has a speck of energy, he finds something that needs fixing. It makes him happy to be productive.

His latest project is fixing dozens of broken pickets in the fence around the front garden. They are custom pickets, so Graham had to make them himself. For each one, he took a pole, used power tools to cut it lengthwise, and then to cut it in half. Then he used yet another fun tool to make each picket pointy.


Cousin Paul from Boston visited at the end of the project and got to help Graham install them with an air nailer.














Paul is a great cook and made Graham an awesome dinner.















Gary got creative with the fruit.



















Graham was feeling pretty sleepy, but when it was his turn at Scrabble, he would still manage to come up with mega-point words.

Three Strikes, But Not Out Yet!

R-CHOP didn't work completely. R-ESHAP didn't work. And now R-ICE doesn't appear to be working either. The tumor in his neck is very aggressive and stubborn.

Although the cancer in the rest of his body seemed to respond well to the chemo, the neck remains a problematic area. We'll be meeting with a radiation specialist soon to target the neck. Hopefully we can get an emergency appointment with Dr. Hancock in the next few days.

Bone Marrow Transplant?

We met with Dr. Gina Laport today to learn about whether a bone marrow transplant would help Graham. Dr. Laport recommended a new technique, called a double transplant. First Graham would be totally irradiated (or given massive chemo, not sure which) and then have his own bone marrow put back. After a month or so, he would be irradiated again, and then a donor's bone marrow would be transplanted. Graham's brother, Gary, is being tested to see if he is a match, in the event that a BMT is possible. We'll find out in two weeks if he's a match.

We're confused about whether a BMT is possible without the cancer being basically under control. Dr. Advani says that a BMT is not designed to stop a cancer, just to keep it away for a long time, potentially forever. She says that it will not be successful and shouldn't be done unless the cancer is under control. This was very depressing, since Graham's cancer seems uncontrollable.

Dr. Laport (or was it her Fellow, a newish doctor?) says that a transplant can be done even if the cancer isn't under control.

So we're confused.

Tumors Grow Back...Let's Try RICE!

Dr. Ranjana Advani, Graham, and nurse practitioner Nicole Barr

We're starting to feel bad for Graham's wonderful doctor, Dr. Advani, because she is faced with giving us bad news every time we see her! But she's quite skilled at it. She'll say basically "This isn't working, but we have this other great treatment that will hopefully work." She doesn't dwell on the negatives, just focuses us on the new treatment and the hope it carries with it.

After just one week on R-ESHAP, it's obvious it's not working. So Dr. Advani recommends that Graham switch to a treatment called R-ICE: Rituxan plus a different chemo combo. It will be given every two weeks for 3 days in the hospital. Graham will start tomorrow.

Graham Gets a PICC Line!

It takes a long time getting chemo through an IV line in one's arm, because the vein there is pretty small. It's also painful getting constantly poked. So, it's helpful to get a PICC (peripherally inserted central catheter) line, an always available portal, that is connected to a very large vein near the heart. It's threaded from near the bicep to the heart.

Graham got a picc line today. It took about an hour. The portal is near his bicep in his left arm. He has to keep it clean and dry, so he'll have to wear a plastic bag over that part of his arm whenever he showers.

It will be so much easier for Graham to give blood for the bi-weekly blood tests, and easier/faster to receive the chemo. They just pop a needle into the portal of the picc, and voila, they're ready to start!

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!