|Baldwin Hills Scenic Overlook, Culver City|
This week will be a one-blog-entry week due to a variety of reasons, not the least of which are jet lag and a raging red rash.
Steve’s memorial was beautiful, respectful, and inspiring. The positive, loving energy among the nearly 300 people that filled the LA studio where it took place was palpable. So many good people that he had attracted in his life and it’s no surprise that they were all there to pay tribute to such an incredible person that had impacted their lives as he has mine. The day was full of laughter, shared stories, touching moments and positivity among Steve’s favorite breakfast foods and drinks.
It was an honor to get to meet his family and to be able to tell them how much their son meant to me. In and of itself, it was worth the cross-country flight to be able to hug his wife, Jen, in person and to hear her speak so eloquently about the loss of her soul mate.
|Sunset in Santa Monica|
Though I wish he was still here, I left having learned more about his life and the way that he lived it giving me such a dose of positive inspiration and an acceptance of the natural rhythms of life and death that I needed at this time. The lessons that he taught through his witty and thoughtful ways did not die with him; they will always live on inside all of us who were fortunate enough to have had him in our lives.
California was beautiful as always. Though we were there for barely as long as the travel time took, we revisited Santa Monica Pier to watch the sun set on the beach and took in the entire city from the top of Baldwin Hills Scenic Overlook in Culver City. The walk down the deep and sprawling set of stairs left me with a ripped left calf and quad muscle after baby-stepping the whole way in flip flops, but the bird’s eye view of the Hollywood sign and downtown LA in the distance was completely worth it. It was the perfect prep to get our bearings before attending the memorial.
We got home to Connecticut late Monday night. I took a shower to shed all the travel germs after two flights. As I was soaping my back, my fingers ran over a bumpy terrain of skin. I showed my naked back to Craig and asked him if anything was there.
|It feels like it looks.|
“Yup. You’ve got a rash,” he said, a little worry and a little disgust mixed in his voice.
I craned my neck to catch my reflection in the mirror and saw my lower back was filled with raised red dots scattered and rashing across my body.
Oh no, I thought and went to bed frightened about what my body would look like when I awoke. I didn’t know if I picked up some communicable disease in our travels, bed bugs, or if suddenly my new immune system decided to start eating away at my skin (aka Graft vs. Host Disease). This wouldn’t necessarily be a bad thing. It was something I’d been pining for since my allo transplant failed. As every doctor has said, a little GvHD is a good thing.
As expected I awoke with more red dots. The rash had crept all down my legs, along the back of my arms and further up my back. It was hot and turned wildly itchy at the touch.
|This is a good thing?|
I calmly took pictures of the most concentrated areas, including my face, which had a completely different type of red patches on it making me look a bit like a burn victim. I sent them off to my nurse at Columbia and explained to her that it all exploded as soon as I got back home. In addition to the rashes, my throat was very swollen and my uvula was hanging heavy and wide back there. Same was happening down the other end of the tract – if you catch my drift. I was a hot mess.
She called me right back and said that this wasn’t something they haven’t seen before, but to hold the Revlimid and to start up a steroid dose pack on top of my regular Prednisone course immediately. And, they would want to see me in clinic the next day for examination.
Even after skipping my Revlimid dose and starting up the steroid pack on Tuesday, I awoke yesterday with more red dots now on my stomach and the tops of my feet. However, my throat opened back up, and for that I was grateful.
|Sexy, spotted leg|
My mom picked me up yesterday morning to accompany me to the city. Ninety minute car ride, circles around New Haven to find parking, 103-minue train ride, 15-minute cab ride and we were at Dr. O’Connor’s clinic at Madison and 5th.
I was uncomfortable the whole way, body hot and itchy requiring every ounce of restraint not to scratch myself silly.
Dr. O took a long, hard look at my rash appearance. He and the nurse lifted my shirt and took a little gasp, but he immediately said:
“Easy. Put your clothes on and we’ll talk.”
Turns out he was concerned that we might have induced GVHD, but after getting an in-person examination he was confident that my rash was a result of the Revlimid – something they’ve seen creep in on other patients as well when they got up to the 20mg dosage that I’d been taking for 11 days.
He thoroughly explained to my mom and me the mechanics of why this was happening and that though it’s uncomfortable, it’s a pretty darn good sign that this drug is working. I like him. He’s incredibly smart, thorough and very funny. We did a lot of ball busting among him, my mom and me and that certainly helped to lighten my fear.
|Reminds me of my middle school acne days|
Clinically, all of this appears to mean that the Revlimid is stimulating my immune system exactly as it’s supposed to. It can be pretty confidently assumed that if it is ramping up enough to cause a rash of this grade then it is likely also becoming active against the remaining lymphoma in my body. We can only hope.
However, I can’t keep going at this dosage, and he didn’t expect that I would be able to. He is working to tailor this treatment exactly to each patient’s tolerance to maximize the effect of the drug and minimize the side effects until we find a perfect balance.
I am to hold the Revlimid until the rash goes away completely. They predict that this will be the case by the end of the weekend. Then, I’ll go back on at 10mg. As long as all remains stable at that dose we’ll start rotating in a few days at 20mg and go from there.
Dr. O doesn’t want to check a scan until at least January to give time for this to work, not wanting to “peek” too soon. Instead, he wants me to enjoy the holidays and if I’m feeling well and doing everything I love to do in January we may even bump the scan off to February. This is a strange concept for me to handle, but I guess this is what it means to treat this disease as a chronic condition.
I’m as itchy as I am hopeful that this is a treatment that will get me to long-term remission and train my immune system to keep this cancer at bay forever.
Until this passes, I’ll have to continue to endure Craig lovingly calling me “Spot” or referring to the “brail” on my back when he slathers it in hydrocortisone for me and my mom referring to me as straight-up “Rash.” Funny, guys.
I’ve only had a few scratch session breakdowns, finding comfort squirming around on the hard, satisfying texture of our rattan dining room rug to get those hard to reach and incredibly itchy foot bottoms and toe spaces. If I can restrain from touching it, it’s not too bothersome, but once anything chafes it, all bets are off.