A "Little" Scare

Yesterday was looking to be a normal day. I was finishing up some work and Adrienne decided to take a shower before we took Curt's car in for some repairs, followed by a casual dinner on the strip. Suddenly, Adrienne came into my office and her entire left arm and shoulder were literally blue, hypoxic blue. I called the clinic immediately and they told us to go to the closest ER. It took a little while for Adrienne to get dressed and the "blue" had subsided by the time we got to the ER, in about half an hour. After a full battery of tests, including an ultrasound of her arm and the veins in her neck plus a chest CT, they didn't come up with anything except for some pneumonia in the right lung, which we know is tumor and not pneumonia. After talking with all of her docs this morning, the consensus is to keep an eye on her and go to the ER if it happens again. Dr. O thinks it might have been a transient blood clot, which makes sense. Normally, they would prescribe blood thinners as a precaution but she can't have them since the chemo will lower her platelets. Adrienne's arm is still hurting today and she's quite tired, but otherwise seems okay.

2008 wasn't our best year. Here's to a new year and more good fortune in our home and yours.

How is Adrienne?

I wish I knew the answer to that question. While Adrienne's pain is much better, she's been feeling achy and short of breath. We'd like to do something to make her feel better but it's hard to know what to do. She's being a trooper, though, and we had a nice dinner last night. We all decided to forego gifts this year and shop the after Christmas sales, including a new cell phone for her. She'll get labs done this afternoon but I'm not expecting any big surprises.

On Christmas day, we decided to go see "The Curious Case of Benjamin Button." It's by far the best movie we've seen in a long time and I highly recommend it. Just be sure to bring plenty of tissues.

We're back to New York for chemo on January 12-14 and then Adrienne goes back to CMC to finish up her senior year. Wow, it's hard to believe.

Home at Last

I want to apologize in advance since I probably won't be getting holiday cards out this year. Thank you for sending them to us. We really enjoy them but it's just enough to keep up with things here right now. Curt is taking the next two weeks off work so hopefully that will help a bit.

Adrienne is feeling pretty lousy this morning with nausea and bone pain from yesterday's Neulasta shot. She's parked on the sofa, tanked up with meds, and hopefully will be feeling better soon. The dogs seem to know when something is up and they're hanging out close to her. The good news is that the pain from the tumor in her ribs/chest wall/lung is gone, yep gone, since a day after the first dose of Bendamustine. It seems almost too good to be true but I saw Dr. O in the hall on Wednesday afternoon and he said it could work that quickly. Let's hope.

The progression of her disease really caught us off guard. With a CT two weeks ago, I thought we could skip a PET/CT in New York but Dr. O wanted one on Monday before she saw him. The amount of progression in just two weeks was astounding after the last couple of years with relatively slow growth. There were three new tumors in the mediastinum; new bone lesions in the spine, hips, and scapula; and the little 1.5 cm tumor between the ribs turned into an 8 cm tumor joining with a now larger left pleural effusion. Clearly, immediate action was needed and Dr. O and his staff jumped right on it. I liked him before...I love him now. Adrienne says loved him all along. :o)

I want to wish everyone a Happy Hanukkah and Merry Christmas and New Year. We can only hope that 2009 is a better year. Adrienne is on track to graduate from college in May and nothing will make us all happier.

Snow in Las Vegas?

I thought you might enjoy some pictures of our backyard this morning, two days after the snow. It gets really cold here in the winter but there usually isn't enough humidity to cause a snowfall.

Bendamustine it is

Yesterday was a ridiculously long day so we slept in a bit this morning. The long and short of it is: Adrienne will start bendamustine today with another dose tomorrow. This drug is FDA approved but not for Hodgkin's so they're working on the insurance issues this morning. She'll get it every 3-4 weeks for up to 6 cycles or as long as it's working. Dr. O'Connor has several other drugs after this one, so we're happy to still have options.

We found out that all HDAC inhibitors like MGCD can cause this rebound effect. The HDAC inhibitors inhibit cell growth and when you go off, the cells can grow even faster. Adrienne has significant progression even since her CT two weeks ago and her pain was really bad last night. There's a large tumor that extends from the left lung, through the chest wall, and between two ribs. This may have fractured one or more ribs so she'll have an xray today to check. Hopefully the bendamustine will get rid of this quickly without radiation because the radiation would have to include the left lung, which could be dangerous.

Off to NY

We leave bright and early Sunday morning for New York. Adrienne has a PET scan Monday morning and we see the doctor that afternoon. Our plan is to walk out with a treatment plan or maybe even to start treatment this week. Her pain seems worse almost on a daily basis, which is a bit unnerving. We saw the radiation oncologist yesterday and she thinks she can radiate this one area but there is a concern about her lung, which would be in the radiation field. We also don't want to do radiation if it would prevent other treatment so we have some tough decisions to make.

We found out this week that the MGCD/Vidaza trial that Adrienne was on was discontinued by the drug manufacturer so it wouldn't have been available to her anymore, regardless of the cystitis.

Adrienne was happy to finish exams on Thursday but has been really tired. The pain meds are adding to her fatigue. She got a procrit shot this week to raise her red count so hopefully she'll be feeling better soon. Getting rid of the cancer would help too.

Thank you

Thank you, everyone, for your outpouring of love and support. We've received so many messages and just haven't been able to respond to every one. Just know that it really helps us to know you're there. Adrienne reads every comment, so don't hesitate to leave a message. Sometimes people leave anonymous messages without a signature. If you don't have a blogger login, please be sure to sign your name so we know who's visiting.

Adrienne's pain continues to worsen. There's a node between the 8th and 9th ribs that's causing the main problem. Though small (2cm x 1.5cm) it's pushing between the bones. She also has a pleural effusion that causes shortness of breath. She was taking a continuous release morphine, which helps both problems, but that made her itch. Now she's alternating between Vicodin and Oxycodone every 3-4 hours but she still has breakthrough pain so I have a call in to the doctor to find a better alternative. She has finals this week and seems able to get her work done, plus she says studying takes her mind off Gus. We've been sharing memories of him the last few days and that helps a lot. Prince seems to have a new lease on life since his surgery so we hope that lasts awhile longer.

We leave for New York on Sunday. Adrienne has a PET scan Monday morning and then she sees the doctor in the afternoon. We really need what I call "the Owen O'Connor pep talk" right now, full of hope and options.

And the bad news continues

Adrienne had a CT yesterday and we got results this morning. Not good news...lots of progression and several new lesions. This all explains her pain and shortness of breath. We sure hope Dr. O has something wonderful to offer. We're also looking into radiation to palliate her pain. She's taking it in stride, telling me not to panic. Easier said than done.

We all miss Gus terribly. He was such a special puppy and we were looking forward to many more years with him. Caesar seems confused since they were good friends, playing together for hours on end. We'd like to get another puppy but are worried about what viruses are around here and being in NY a lot in the coming months so we'll have to wait for awhile.