Good news first: I’ve been asked to be a blogger for the new Huffington Post section called Generation Why which focuses on young people and cancer. At first I had to look to my left and right and ask, “Me?” because I haven’t really thought of myself as young in a while. But certainly issues facing people like me with cancer can be unique. The necessary pushes and pulls of being social for my children with the always magnetic desire to just be alone will be one theme I will write about for sure. A friend commented that he was “impressed” I was writing for HuffPo… I will have to remind him that Jenny McCarthy does, too, so it might not be as impressive as he thinks!
That said, I’m very pleased to have a wider audience for my writing. I hope the readers and commenters will be as nice as you all have been. The first post should go up this week and I’ve decided to have them use this week’s post “Alone” as my inaugural piece because the response to that one was overwhelming. I might as well start with a bang! I hope that piece will be one that represents my perspective well.
So.. the bad news is not terrible, but here is the latest news. While I started with very good tolerance to the 4th round of chemo, the end of the round ended up bringing hand/foot syndrome (palmar-plantar erythrodysesthesia) from the Xeloda. Hand/foot syndrome is not the same as neuropathy (though it may include some of those symptoms), which many people on chemotherapy experience.
Hand/foot syndrome is associated with a few particular drugs, Xeloda is one. The capillaries in your hands and feet leak and/or rupture, causing the chemo to spill into the extremities. This causes them to be extremely red, swollen, painful, sensitive to touch, cracked, peeling, and potentially ulcerating. Numbness and tingling also accompany the condition.
For the past month I’ve been trying to keep these effects at bay, but eventually the toxicity builds up. Fine motor activities like tying shoes are hard at the moment, anything that touches/puts pressure on hands and feet. Thankfully I have some shoes with furry insides and cushioning. Socks must be worn 24/7 and slippers at all times. Holding the steering wheel is uncomfortable but doable, thankfully. So many people have suggested I should do something relaxing like go for a massage or manicure/pedicure. Unfortunately between the broken ribs and a “no touching” order for hands and feet these things will have to wait!
I had to skip my last dose (there are 14 in each round right now) of chemo yesterday to prevent a flare. The plan will be to reduce the chemo dose to 3 pills in the morning and 4 at night next round to see if that will be enough of a reduction to stop the progression of the syndrome. If it isn’t, we’ll reduce again. The reduction in dosage is not rare. My understanding is that tolerating 4/4 for 7 days on and 7 days off for more than a few months is pretty unheard of.
I’ll have bloodwork on Monday, December 3rd and then meet with my local oncologist on Tuesday the 4th for a strategy meeting and check on the hands and feet. I’ll also receive my monthly IV of Zometa for my bones at that time.
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Tomorrow (Saturday) sometime between 7-8 AM I’ll be on Robin Kall’s radio show which streams at www.920whjj.com. Stay in your PJs and join us! I think it will be after 7:15 sometime as the 2nd segment.
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Thanks for the continued support and I’ll have a more creative post this weekend.
Link to Twitter
Thanks for letting us know what’s happening. You’re always in my thoughts. xoxo
Congratulations on the HuffPost gig, Lisa! You deserve as wide an audience as possible as your insights help so many. I hope your current complications resolve quickly, no fun. Gentle hugs from Denver, K.
I love Jenny McCarthy’s writing. She’s insightful and very funny and always always compelling. Read her Chicago-based blog before knocking her!! And as long as HuffPo continues not to pay its writers, I continue not to read it.
As long as she spouts dangerous anti-vaccine nonsense I’m not interested in her work.
Suzy, I do agree on them not paying writers. I was on a rant about it just last week before the opportunity came in. I decided under the circumstances I will just let that part go. Still may do an e-book or on-demand printing of a collection of blogposts at some point in the future.
Congratulations on your new job – your wonderful writing is being noticed and appreciated! Your kids are lucky to have such a talented mom. Hope you can get your medication doses adjusted quickly.
Well, it doesn’t pay… so maybe it’s more of an internship? Thank you.
Well I am extremely impressed at the Huffington Post gig! Congratulations Lisa!! I did not know until reading Suzy Soro’s comment though that the writers don’t get paid. That is unfortunate. I guess since we don’t pay to read it though, maybe it’s understandable?
Sorry to hear about the hands/feet thing. That sounds very painful. I hope you can still hug.
Thinking of you!
Such great news that Huff recognise the quality of your writing!
PPE sucks.I got just a mild case from my first chemo. Just enough to make me realise how sucky a bad case would be… Checked the info sheet at work and you are doing all the things it lists, except you didn’t mention using cotton gloves on your hands after slathering with cream.
We also recommend that people have a good pedi before they start the drug, so I hope you got that in, The PPE seems to be worse in places with callouses etc to start with.
thank you so much for checking. I do use the gloves at night, if I can during the day, and before I leave house in morning I slather again and put gloves on… which I wore all day today, even while shopping. At least in cold weather I don’t get strange looks…
I was very good with my feet before starting, and was even able to keep buffing at home before this last week. I am sure it helped. Still looking into the henna treatments and also have heard about B6, but my oncologist here doesn’t have info about that. I will ask at Sloan next time I am there. Many thanks.
Congratulations on the Huff Post, Lisa! You’re a natural [read: Excellent] writer. Looking forward to your posts.
the HuffPo part couldn’t have happened to a better person. the side effects thing….mmm, not so much. xoxo
Gentle hugs.
What a huge honor…for HuffPo! I love that your gracious, incisive writing will be seen by a larger audience. I hate the reason why.
I think of you all the time with love.
Jamie
Money’s not the only thing that makes work “real” or important — the larger reach at HuffPo, that’s no internship. I’m so glad more people will find you. I hope the hands/feet problems remain more in the realm of nuisance — and the next round goes well.
You’re in my thoughts.
Lisa this is so great. Expressing such a difficult time brings on positive exposure for you and helping so many others in the breast cancer community. I am sorry about the side effects of the xeloda and wondering if your oncologist approved acupuncture perhaps it could help minimize the hand-foot syndrome effects. Meanwhile hugs and prayers are coming your way! XoXoXo-Susan
You being at HuffPo thrills me. I follow your updates and now more people can learn about living with cancer, and how they can be a help, or support those with cancer. My nephew has been living with cancer for almost eight hears. In remission twice, and he’s doing well now. It is uncomfortable for me to ask how he is because he sometimes snaps back.
My BIL passed away within 8 months of being diagnosed with multiple brain tumors. Again, a touchy subject when I’d ask how I could help, he once snapped back, “why does everyone act like I’m dying???!!”
Hoping, I’m hoping, that I’ll learn how to ask and offer assistance the right way. It’s a difficult subject to maneuver, and you will be doing so much for people like me–that feel helpless and genuine love the person they’re asking about.
Thank you, with all you have to tend to, thank you.
I can feel how the writing helps. Just like with my depression–my writing takes me out of my world and time stands still.
I hope it offers you the same respite.