Skiing legend Scott Gaffney broke the news last year on Instagram that his little brother, Robb Gaffney, was battling a rare form of bone marrow cancer.
In a couple of updates, one on Facebook and another on his Caring Bridge journal, the family has provided updates on Robb’s recovery.
Baby steps and cautious optimism for now, but we’re on track! Phew.
Write when there’s light
I’ve been trying to get to this update for quite sometime and I even had to delete several one sentence drafts on a few days because I couldn’t push through any further. But now I’m seeing the light and feeling the energy to write a little.
The second transplant has been a doozy and while in some ways that is reassuring – maybe it really kicked the leukemia hard – the experience itself opened my eyes to what other veterans have said, “some transplants are easy and some are hard”.
With the intent of enhancing transparency versus garnering reassurance, here are a few of the experiences. I think I might have written already about the nausea/vomiting phase, which I thought had stopped two weeks ago. It actually continued at a lower frequency and attempting to eat or take pills was a struggle each day. Some days, I’d be able to put down 800 calories after working on dinner for an 1 hour and 1/2, but it would all come back up, at times in the blue bags, other times on the floor, and yet other times into the hands as I rushed to the bathroom.
Then came the mucositis, which ended up being rated as “severe”, with lesions in the mouth, throat and down into the esophagus. Getting liquified food and water past those sores took effort and involved a strategy of loading up with oxycontin for pain, and zofran to prevent vomiting. A three push swallow would force it through and it felt like squeezing fluid through three layers of foam. Fortunately, in the past 2 days the lesions are healing and I ate a soft breakfast this morning without any issue.
There are few other things that I’ll mention briefly, including having a hairy tongue , which is a noninfectious, natural reaction of the taste buds and epithelium to all the treatments and low blood counts. The “hairs” grew up to 1/2 inch and matted the tongue, especially the back portion. They looked awful, made food taste disgusting, and created a sensation of a carpet in the back of the mouth. The last issue to mention is that the chemo and fluid overloading taxed my heart and we’re going to watch and see where that goes over the next several weeks/months.
Ok – with the tougher stuff over with…
On day 16 post transplant, the neutrophils revealed themselves. They started out at 0.1 for a couple days, then climbed to 0.3 and remarkably they jumped to 0.8 overnight last night. I am very excited about this because it didn’t even require injections of Neupogen, the white cell stimulator. I haven’t needed blood product transfusions in several days. So we are on track for “engraftment” in the next couple days. Gosh, do those counts, even as low as they are, make you feel better! This is my first morning looking out the window genuinely feeling a lightness of being.
Sleep has proved to be a huge factor in allowing the body to build the new system. The brain, in these cases, doesn’t give you the option of whether you want to stay awake or not. If you start to feel the fatigue set it in, it’s time to hop in the bed within seconds for a ridiculously deep 2-3 hour nap. Try to recall those naps on the living room floor when you were a kid!
I think that’s it for now. I’ll be signing on more frequently.
Oh, people were asking about the mountain in the previous post. It’s Merriam Peak. Beautiful area!
Photo 1: Truth is strength. These bracelets were made by a Navajo woman named Alice, who was in her 70’s and could no longer make it to her roadside stand, which was way out in Arizona. Good time to use them with Kate for good luck!
Photo 2: When the neutrophils climbed, I was able to escape the room after 18 days. Makes you really think about POWs and others who have been inappropriately incarcerated for huge periods of time.
Photo 3: FaceTime always helps
Robb is a genius, one of the smoothest, most gorgeous freeskiers we at SnowBrains have ever had the pleasure of watching. He still managed to ski 100 days every year while attending medical school at UC Davis. Here’s the original post by Scott last year breaking the news:
I have good news and I have really bad news. Let me start with the bad. In late July, my younger brother, Robb, was diagnosed with Myelodysplastic Syndrome with Blasts, a high risk version of blood/bone marrow cancer. We were stunned, shaken, confused, broken, scared.
But there is good news: * Anyone who has gone up mountains with Robb knows that he’s something of a machine. And even though his critically low blood counts have him operating on a fraction of what the rest of us do, he’s still going into this strong. * Robb will be receiving treatment at MD Anderson in Houston, the leading treatment center in the nation for this form of cancer. * Robb has always been an incredibly selfless soul. As news of his condition circulated through the Tahoe community the past few weeks, the outpouring of love and support has been phenomenal. What a wonderful return. He finds strength in feeling that he is not going into this alone. * At only 48, age is on his side. * Just a few days ago Robb was notified that two matching bone marrow donors had been found. This is a huge step in the process, as it was one of the hurdles completely out of his control.
Robb has been through two weeks of chemo and received a number of blood and platelet transfusions which are necessary to stay alive. With extremely low defenses, he has to avoid public scenes and personal contact because of exposure risk to germs. But he’s still getting out hiking any chance he gets.
He’ll continue with mellow chemo treatment in Tahoe for another month or two. Then he’ll head to Houston for an intense week of chemo and radiation, during which they eliminate his entire immune system. Then he’ll get a bone marrow transplant. If all goes well, he’ll remain in Houston for 2-3 more months for observation, and then will carry out another year of light chemo in Truckee.
We’re beyond the stage of disbelief and sickening sorrow; it’s time to tackle this thing head-on. There’s no question it’s going to be a long, gnarly road. For all of us on the sidelines, it’s more or less a waiting game right now. But please keep him in your thoughts, and think positively!
Robb appeared in one of our favorite ever ski movies, 1999, filmed and produced by his brother Scott, who is now the editor of all the Matchstick Productions (MSP Films) movies, as well as a part-owner of MSP Films.
A GoFundMe has been set up by friends and family. As you can imagine, this has all been a huge shock – and it’s put a heavy financial burden on the family. Robb is the primary wage-earner. While he’s fighting this cancer, he has had to substantially reduce and alter his private practice.
To allow him to recover from the transplant, doctors have recommended a six-month hiatus before Robb can return to work. His son, Noah, is approaching his first year at UC Davis, and it was Robb’s intention to work extra-hard this year to help cover those costs.
Robb and his family are very grateful for the overwhelming amount of love and social support they’ve received from the community. While Robb is reluctant to seek financial support, he has been advised by many who have experienced the immense burden of such a cancer to begin this GoFundMe campaign.
Of course, with the prognosis, this is a highly challenging time for the entire Gaffney family. They very much appreciate all the thoughts, words of encouragement, prayers, and well-wishes that have been pouring in. Please know that it all matters!
Thanks so much for your help!