Good news: I went in for my monthly visit at the City of Hope on Monday and my Eosinophils (EOS) are still behaving. I mentioned to Dr. Forman that I'm a member of a Yahoo! Group for individuals with EOS issues. The group concensus is that it could take as long as six months after tapering off high-dose steroids for the EOS levels to go haywire again.
He agreed and took out his pen and signed me up for monthly visits for the next six months. Most patients who are one-year post transplant get to space their visits three or six months apart, but this EOS business is keeping me on a short lease.
Dr. Forman was curious about how I found an EOS group and I told him there was a little thing called the World Wide Web that made it easy for patients to find their peers. The rarer the disease, the more desperate patients are to make connections. Most of the members of the EOS group have been diagnosed with HES (Hyper Eosinophilic Syndrome). Almost everyone has a horror story of becoming deathly ill (much as I was last summer) before doctors reached a diagnosis. I was actually pretty lucky to be under the care of a hematologist at the time.
As I've mentioned before, my preoccupation with the EOS has taken my mind off the possibility of a cancer relapse. Even Dr. Forman said, "I almost forgot the reason you first came here," as he checked my neck for swollen lymph nodes. And my email messages from my Mantle Cell Lymphoma (MCL) group go mostly unread these days.
It's also taken my mind off my cutis laxa (lax skin) disorder that, I'm ashamed to admit, was a bigger blow to me than finding out I had cancer. Mantle Cell Lymphoma is treatable; cutis laxa is not. I had fears of looking like a shriveled prune before my 55th birthday, alive but repulsive. In the last month, two other patients, a man and woman, have emailed me after finding my blog post on cutis laxa. Both were extremely relieved to find someone else with the same rare condition and are eager to share stories, feelings and recommendations for plastic surgeons.
I plan to talk by phone tomorrow with the woman with sagging skin. I may even suggest that we start a Yahoo! Group.
Showing posts with label mantle cell lymphoma. Show all posts
Showing posts with label mantle cell lymphoma. Show all posts
Wednesday, January 28, 2009
Sunday, December 7, 2008
It's that time of year.
It's a busy time of year - with lots of hustle and bustle, greeting and eating, shopping and dropping.
On Saturday night, I agreed to be the "pinch hit" hostess for a dinner party for eight after the original hostess sprained her leg. You can read about the signature Winter Delight Salad I prepared at Open Mouth, Insert Fork.
It's also that time of year when I'm busy at the City of Hope with six-month CT and PET scans, my quarterly infusion of Rituxan and follow-up appointments.
I'm gradually tapering off the Prednisone (down to 10 mg every other day), and I'm already starting to experience the same GI symptoms that were prevalent when my eosinophil (EOS) levels began to rise in May. I'll have a blood test on Monday, December 15, to confirm if those whacky EOS are once again on the rise. As we learned the hard way, out-of-control EOS can make me very, very sick, so it's important to rein them in right away. Like diabetes, hyper eosinophilic syndrome (HES), is controllable, but it's a lifelong challenge.
One good thing is that my preoccupation with my EOS levels (along with the hustle bustle of the season) have taken my mind off the possibility of a relapse of mantle cell lymphoma (MCL)
On Saturday night, I agreed to be the "pinch hit" hostess for a dinner party for eight after the original hostess sprained her leg. You can read about the signature Winter Delight Salad I prepared at Open Mouth, Insert Fork.
It's also that time of year when I'm busy at the City of Hope with six-month CT and PET scans, my quarterly infusion of Rituxan and follow-up appointments.
I'm gradually tapering off the Prednisone (down to 10 mg every other day), and I'm already starting to experience the same GI symptoms that were prevalent when my eosinophil (EOS) levels began to rise in May. I'll have a blood test on Monday, December 15, to confirm if those whacky EOS are once again on the rise. As we learned the hard way, out-of-control EOS can make me very, very sick, so it's important to rein them in right away. Like diabetes, hyper eosinophilic syndrome (HES), is controllable, but it's a lifelong challenge.
One good thing is that my preoccupation with my EOS levels (along with the hustle bustle of the season) have taken my mind off the possibility of a relapse of mantle cell lymphoma (MCL)
Tuesday, June 3, 2008
"I have a friend . . . "
When I was first diagnosed with cancer, several well meaning friends offered to hook me up with other cancer survivors. "I have an uncle who beat colon cancer. Would you like to talk with him?" "My best friend is a six-year breast cancer survivor. I'm sure she'd love to talk with you."
I appreciated their offers, but I didn't want to talk with people with just any cancer. I wanted to connect with others with my rare blood disease, mantle cell lymphoma (MCL). I felt like I struck gold last year when my friend Reiko informed me, "My colleague Dave had the same thing." Not only did Dave have MCL, but he also had a quirky eye tumor, just like me. Considering that there are just 4,000 new cases of MCL diagnosed each year and less than 1% of thse cases involve the optic area, the odds are staggering that we rare birds would find one another through a mutual friend.
Around the same time, Newsweek columnist Jonathan Alter became the poster boy for MCL by writing a cover story for Newsweek Magazine. Dave and Jonathan communicated three valuable messages to me:
- You are not alone.
- The treatment is rough, but temporary.
- Many, like me, have beat down the disease.
Now that I'm six months post auto stem cell transplant, I've also become a go-to girl for blood cancers. (I must remember to add that to my resume.) It seems that not a week goes by without someone emailing or calling me to find out if it's OK to give my name to a newly diagnosed blood cancer patient.
A couple weeks ago, a friend in Connecticut called to tell me that one of her colleagues in NYC was just diagnosed with MCL. Again, the odds are slim that one individual would have two friends with this disease. I talked with her friend and then followed up with an email with links to my favorite MCL-related websites, listserves and blogs.
Last week, I received a call at 10:30 pm on a weekday night. Noone calls me at this hour. It was my friend Eleanor, the grandmother of my god-baby and an oncology nurse at a San Fernando Valley hospital. "I'm sorry to call you at this hour, but you've got to talk with the girlfriend of one of my patients. She went with her boyfriend for a consult at the City of Hope and I think she had the same doctor that you had when you first started out there."
I listened to the young woman's story. Her 22-year-old boyfriend was recently diagnosed with acute lymphocytic leukemia (ALL). His local oncologist recommended that he go to the City of Hope for a stem cell transplant. But instead of being filled with hope after the consultation at CoH, she was filled with hopelessness and confusion. Because of the negative tone of their consultation, she and her boyfriend's family were ready to close the door on the option of this life-saving procedure at the CoH.
The young man and his family and girlfriend did in fact see the same doctor that I initally did at CoH. I told her that this doctor was neither a bad physician nor a bad person, but acknowledged that her bedside manner launched me on a quest to find another doctor at CoH. I begged the young woman to give City of Hope another chance. I also shared information about the second opinion by mail system at MD Anderson. The young woman asked me if it would be OK if her boyfriend's mother gave me a call, and I told her that I was eager to talk with the mom.
That mother hasn't called me back, but I still hope that she will. I ask myself why I'm so eager (over-eager actually) to talk with this particular mom. I think I want to take away some of her pain. And I want to tell her that everything's going to be alright. But, unfortunately, I don't have the ability to take away anyone else's pain. And noone, not even a doctor, can guarantee that "everything's going to be alright."
If she does call me, I plan to listen hard with my head and my heart. And then I'll recall the three messages that sustained me during the first weeks after my diagnosis.
- You are not alone.
- The treatment is rough, but temporary.
- Many, like my friend Ann, have beat down the disease.
ONE YEAR AGO TODAY: Cancer Banter went to a used-car lot.
I appreciated their offers, but I didn't want to talk with people with just any cancer. I wanted to connect with others with my rare blood disease, mantle cell lymphoma (MCL). I felt like I struck gold last year when my friend Reiko informed me, "My colleague Dave had the same thing." Not only did Dave have MCL, but he also had a quirky eye tumor, just like me. Considering that there are just 4,000 new cases of MCL diagnosed each year and less than 1% of thse cases involve the optic area, the odds are staggering that we rare birds would find one another through a mutual friend.
Around the same time, Newsweek columnist Jonathan Alter became the poster boy for MCL by writing a cover story for Newsweek Magazine. Dave and Jonathan communicated three valuable messages to me:
- You are not alone.
- The treatment is rough, but temporary.
- Many, like me, have beat down the disease.
Now that I'm six months post auto stem cell transplant, I've also become a go-to girl for blood cancers. (I must remember to add that to my resume.) It seems that not a week goes by without someone emailing or calling me to find out if it's OK to give my name to a newly diagnosed blood cancer patient.
A couple weeks ago, a friend in Connecticut called to tell me that one of her colleagues in NYC was just diagnosed with MCL. Again, the odds are slim that one individual would have two friends with this disease. I talked with her friend and then followed up with an email with links to my favorite MCL-related websites, listserves and blogs.
Last week, I received a call at 10:30 pm on a weekday night. Noone calls me at this hour. It was my friend Eleanor, the grandmother of my god-baby and an oncology nurse at a San Fernando Valley hospital. "I'm sorry to call you at this hour, but you've got to talk with the girlfriend of one of my patients. She went with her boyfriend for a consult at the City of Hope and I think she had the same doctor that you had when you first started out there."
I listened to the young woman's story. Her 22-year-old boyfriend was recently diagnosed with acute lymphocytic leukemia (ALL). His local oncologist recommended that he go to the City of Hope for a stem cell transplant. But instead of being filled with hope after the consultation at CoH, she was filled with hopelessness and confusion. Because of the negative tone of their consultation, she and her boyfriend's family were ready to close the door on the option of this life-saving procedure at the CoH.
The young man and his family and girlfriend did in fact see the same doctor that I initally did at CoH. I told her that this doctor was neither a bad physician nor a bad person, but acknowledged that her bedside manner launched me on a quest to find another doctor at CoH. I begged the young woman to give City of Hope another chance. I also shared information about the second opinion by mail system at MD Anderson. The young woman asked me if it would be OK if her boyfriend's mother gave me a call, and I told her that I was eager to talk with the mom.
That mother hasn't called me back, but I still hope that she will. I ask myself why I'm so eager (over-eager actually) to talk with this particular mom. I think I want to take away some of her pain. And I want to tell her that everything's going to be alright. But, unfortunately, I don't have the ability to take away anyone else's pain. And noone, not even a doctor, can guarantee that "everything's going to be alright."
If she does call me, I plan to listen hard with my head and my heart. And then I'll recall the three messages that sustained me during the first weeks after my diagnosis.
- You are not alone.
- The treatment is rough, but temporary.
- Many, like my friend Ann, have beat down the disease.
ONE YEAR AGO TODAY: Cancer Banter went to a used-car lot.
Monday, October 1, 2007
It could be nothing, or it could be something.
If I had a nickel for every time I heard these words, I'd be at least a quarter richer.
My PET scan showed some hot spots in my colon and bowel area. This could explain my vague symptoms - gastrointestinal grumblings, gassiness, unexplained weight loss, a feeling of fullness. But it could be nothing or it could be something.
Cancer spreads to the colon in 50 to 80% of Mantle Cell Lymphoma cases. When I had a colonoscopy in March, right before the start of Hyper CVAD, you may recall that I came out as clean as a whistle. But with this new turn of events, I'm scheduled for another colonoscopy (GoLytely, here I come) and lower GI biopsy early next week. I'll meet with Dr. Forman to review the results a week from Thursday.
Don't worry. Dr. Forman has a lot of tricks up his sleeve to deal with the worst case scenario. In the meantime, it's more waiting and more wondering.
Tuesday, April 3, 2007
Cover Girl
Have you seen the Newsweek cover story written by mantle cell
lymphoma survivor Jonathan Alter?
After a friend sent me the link, I tore into the page-turner of a story
with the same vigor that I used to rip into the delivery pizza two nights ago.
Engaging style. Fascinating content. Good use of tension.
And then it hit me. This wasn't just Alter'sstory; it was mine. Yes, every
cancer patient's story is unique, as Alter out, but the similarities go
way beyond the fact that we both have the same rare form of cancer. As writers,
we both approached the diagnosis in the same ferocious way of researching, second
guessing and escalating. We both were lucky enough to have connections to get
immediate appointments at a top-rated cancer center. We both turned to blogging for
support. He endured an autollogous stem cell transplant as I likely will.
After three pages, I couldn't keep reading. I sobbed. I hyperventilated. I cursed. I didn't
want this to be my story.
But it is my story. I took a break, gathered the mail and opened cards. I came back and
finished reading because I want my story to end just like Alter's - filled with hope and
optimism. I especially needed to be reminded of the quote from Shawshank Redemption
(one of my favorite movies): "You can get busy living, or get busy dying."
For both Altler and me, it's no contest.
Tuesday, February 27, 2007
Let's Banter About . . . Cancer
After I first discovered I had cancer - mantle cell lymphoma to be exact - several of my writer friends asked, "Are you going to write about this?"
"Hell, no!" I responded. I figured that the subjects of cancer and "my cancer journey" had pretty much been played out in newspapers, magazines, after-school TV specials, tear-jerker movies and, most recently, in blogs. I didn't think the world needed another excruciating account of the highs and lows, friends and foes or delights and woes of battling cancer.
It's as though the blog was invented by and for cancer patients. Type in the words "cancer" and "blog," and you'll receive more than 32,000,000 hits. Try "mom" and "blog," and you'll receive less than 20,000,000 hits. That surprised me. I thought for sure there would be more moms writing about the agony and ecstasy of childbirth and child rearing than people kvetching about cancer. Enter "liberal democrat" (another group of which I'm a member) and "blog", and the number of hits shrinks to just over a million.
I guess it would be easier to make a case for a liberal democrat blog than for yet another cancer blog. But, unlike the freelance stories that I pitch, this blog isn't about "filling a need" in the market place. It's about filling my own need to share what's euphemistically called a "journey" and a "ride."
"Hell, no!" I responded. I figured that the subjects of cancer and "my cancer journey" had pretty much been played out in newspapers, magazines, after-school TV specials, tear-jerker movies and, most recently, in blogs. I didn't think the world needed another excruciating account of the highs and lows, friends and foes or delights and woes of battling cancer.
It's as though the blog was invented by and for cancer patients. Type in the words "cancer" and "blog," and you'll receive more than 32,000,000 hits. Try "mom" and "blog," and you'll receive less than 20,000,000 hits. That surprised me. I thought for sure there would be more moms writing about the agony and ecstasy of childbirth and child rearing than people kvetching about cancer. Enter "liberal democrat" (another group of which I'm a member) and "blog", and the number of hits shrinks to just over a million.
I guess it would be easier to make a case for a liberal democrat blog than for yet another cancer blog. But, unlike the freelance stories that I pitch, this blog isn't about "filling a need" in the market place. It's about filling my own need to share what's euphemistically called a "journey" and a "ride."
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