Cancer Chronicles

january in pittsburgh...

2006-01-22T11:46:00.000-08:00

not the sunny beach i wish i were on at the moment. but heading to pittsurgh (today in fact) for some advanced radiation treatments at upmc, which has expertise in a focused radiation variable called gamma knife, radiosurgery, etc....I had it once to my chest. no biggie. but seeing as how this time it's to my brain - and they screw a mask into your skull to position you - im a little more trepidatious (sp?)....film at 11

last christmas, again

2006-01-07T14:31:00.000-08:00

last year was my last christmas, i was sure of it. (three breast cancer re currences then and counting.) to my amazement, Im here again this year - sure this one is my last holiday, too. of course, i remind myself, ive given myself 13 last summers and 13 last whatevers since i was diagnosed in 1992. which if nothing else reminds us none of us know....
sure this was my last christmas, i was in a quandary over the mountain of gifts i annually send to family and friends - should i do more this year, less? more for charity? i landed somewhere in the middle; too many gifts for some friends and family, just the ordinary ones for others, alot more charity.
now the holidays are past and i worry that i find myself going from type a to couch potato in a dangerously short period of time. soooo, like "normal" folks (or at least those who do not have terminal cancer) Im making the usual promises: we're joining the y, i seriously plan to do some volunteer work that paid work has kept me from (my excuse anyway) over the years.
Im more tired now but it's devilishly hard to sort out the cause: is it the cancer, the two weeks of whole brain radiation treatment (not nearly as fun as it sounds) or just a mental thing? no easy answers here, in fact i could comment that having cancer almost automatically means that many answers, about treatment, cause, future, etc., will remain out of grasp.
just the same, happy new year! hopefully not the last one for any of us.

that time again....

2005-10-27T11:08:00.000-07:00

the season has changed, leaves are falling, must be time for that quarterly blog. have no idea why i have so much trouble doing this. maybe i just think blogs are creating too much word pullution out there. has anyone thought of calling them blahgs? of course, that's only my excuse for procrastinating.
sad times, and it's that damn (*&*& cancer again. a good friend has just died from brain cancer; another good friend is dealing with the bad news that his head and neck cancer has returned. me? i am thrilled, blessed and beyond happy to not only be here still but also feeling much better after a several months' break from chemo (taxol). but i realize that another recurrence can be only a CAT scan or two away.
I do really truly enjoy the good days i have. but no, i am not yet the wonderful cancer-transformed person who no longer "sweats the small stuff" and smells those roses every day. give me 20 years more, and ill work on that. (which makes me think: people with cancer or other dire diseases are pressured too much to become better people somehow as they - unlike others - come to fully appreciate the frailty of life. please. it's hard enough as it is maintaining normal old life in the face of this disease.)
another thing. some people (including my fine editor trish) look to me for emotional reactions (sad, happy, angry, etc.) as I deal with good or bad cancer news - such as the recent news, good for me, that Herceptin is a fine breast cancer drug. i'm still emotional about many things. but when it comes to my cancer, i've become rather matter of fact. i try not to get too excited about good developments, too depressed about bad ones. other advanced cancer people i have met act (or rather non act) the same way. mostly, i want to avoid the emotional roller coaster that so many early cancer patients, including me many years ago, find themselves on. hey, today's a pretty good day, i feel OK, i'm cooking up pots of bean soup and chili like a maniac, so that's all i'm going to think about.
i'm still thinking about summer too - a really fabulous one, best one of my life i think. thanx to the chemo break, and a wad of time off, i did so many things i had been putting off. anna and i took a long delayed trip to texas and northern mexico and a long drive to ocracoke island - a place she had not seen since she was about a year old. we swam and swam and when we werent doing those things just did nothing. it was perfect. that is one piece of advice ill give: don't put off the fun times.

can it be July already?

2005-07-01T08:06:00.000-07:00

gosh. and it's been so long that ive blogged that for a moment there i forgot i had a blog. (is there such a thing as blogger fatigue, blogger burnout, especially for those who blog alot? i mean, it's quite a responsibility isnt it? you could see letting other portions of your life - laundry, for instance - go while you feed the blogger word beast. least that won't happen to me!)
but i digress. how am I?, long distance and near distfriends ask alot. cancer patients get asked that ALL the time. there is a sense in the non cancer world that if you turn your back for a moment on friends with cancer, they will suddenly die, or go into a coma or something. im not being critical of this...even i do it with my own friends with cancer. unfortunately, you have to actually have cancer yourself to understand that by and large, it's a very slow disease - no less dreadful for being that (dying slowly is, to say the least, a real challenge) - but still very slow. the days creep along, with very little discernible change, tho in my case ive noticed my condition seems to rise and fall in waves. had a dreadful winter, filled with antibiotics (for a swollen leg) and fatigue; now am perking up, tho no doubt the great weather plays a roll in that. i feel good enough some days to plan long road trips with my daughter, other days just "knackered" (favorite british word). overall, tho, im not my old self but a semi-invalid. i cant quite admit to being a full invalid yet, but as someone who mainly hangs around the house and cant walk much more than a block without stopping and resting, semi will do for now. mentally, i remain more on the optimistic side; im hopeful that alot of swimming this summer, taken on alot of wonderful days off, will restore both strength and spirit.
im suffering some blog guilt- not over not writing much but over not writing enough about the great friends who've sustained me and helped me out. colleen, my closest friend, deserves so much thanks that in another 100 years i couldnt thank her enough. for several months this winter, she got up extra early to come to my house and drive daughter anna to school, just so i could sleep in a bit more. this is NOT a gal who exactly hops out of bed in the a.m. yet she insisted on doing this to give me a break. what a friend....

a month has passed...time to blog again?

2005-05-01T10:50:00.000-07:00

ok, so Im a really bad blogger and I dont really have an excuse, other than procrastination, im an old fashioned non blogger type and also a little sketchy about writing about myself (instead of other more deserving individuals), which, I know, boils down to alot of bs excuses.
but anyhoo.
here's what's new with me: I got the results back from my genetic test, which was to help me determine if I had a genetic mutation that might explain my breast cancer. No, i dont. or at least not a mutation that is as yet identifiable through existing tests. I feel badly about this. why? because as any cancer patient knows, we all yearn for a REASON for our cancers, and so few of us find it. so im back in the dark again, not only in the dark but back to the blame game. Im certain that somewhere exist research studies showing that many cancer patients blame themselves for their disease. (I recall a study I wrote about years ago that listed all sorts of self blame rationales women had for their breast cancer.) in my case my breast cancer blame list goes something like this: too much wine, too many heavy duty hormone med during past fertility treatments, delayed childbearing, too poor a diet, too many nights sleeping with a light on (yes, there has been credible research showing that women who dont sleep in the dark are more prone to breast cancer), etc. I know in my heart it's ridiculous to spend much mental energy on this: cancer patients have enough going on, they don't need guilt on top of it. but I sure wish I had a genetic cause, then it would all be settled in my mind.
in other news, my right leg has swollen up, gotten red, warm, painful. (My right butt has done same, which is both funny and awful.) my docs, and i have very good docs, are torn between saying it's an infection like cellulitis (which, alas, does NOT get rid of your cellulite) or a long-delayed reaction from radiation to bone cancer in that leg last august. we're all scratching our heads over this. and just when it seems to be getting better, it gets kinda bad again. so film at 11. any of you swollen leg/butt people out there pls feel free to email me with your thoughts.
happy May!
fawn (fvrazo@phillynews.com)

the reluctant blogger

2005-03-07T15:06:00.000-08:00

a friend and member of my Quaker meeting (that makes him twice a friend) sent me an email recently noting there hadn't been a blog entry from me for some time, and, uhm, was I OK? yes! but I suffer from terminal blog procrastination, which, while annoying and probably incurable, is way better than cancer. some updates in my life: nurse coordinator and genetics counselor Martha (Marty) Weinar at the Hosp. of the Univ of Pa., the sister of my excellent friend Beth Palubinsky, had a very helpful discussion with me about genetic testing for breast cancer, and as a result I gave her a bit of my blood for a test that will determine if I have a mutation in the BRCA1 or BRCA2 genes, which were linked several years ago to breast cancer. one of my aunts died in her late 30s from the disease (young cancer tends to point to a genetic cause) but Im not aware of any other family members with it also. (not all members of my farflung sometimes dysfunctional family are necessarily communicating well with eachother.) of interest to note: my aunt who died was on my father's side, and for some reason people assume that breast cancer can't be passed on from the paternal side of the family. totally not true! Ill know within three weeks or so if I carry a mutated gene, which would strongly suggest that my own breast cancer can be blamed on a kink in the DNA. why does it matter to know this? it won't change my treatment or prognosis; but the news would be of great interest to my sister and also my son, who, if he inherited the mutation, could pass it on to his children. (that paternal thing again.) my adorable daughter is adopted so the news will have no impact on her. who doesn't want to be able to pin down the cause of their cancer, something few of us are able to do? my advice: do this if your insurance covers it and a genetics counselor recommends it. why not?
tests, damnable tests and more tests, which, dear fellow cancer patients, I dont have to tell you about. CAT scan recently was quite good, but my hip is suddenly hurting, which points to the need for another bone scan or MRI. MRI it is. (the last MRI, in august, found bone cancer in my right thigh.) Ill try to be positive here - remembering how a test a couple years ago "found" bone cancer in my spine. it turned out to be osteoporosis. I was so happy I wanted to throw an "I have osteoporosis!!" party. so we'll see.
here's a request I made before: email me if you're currently working through chemo or radiation for any kind of cancer. I keep planning on doing on story on this. fvrazo@phillynews.com
cheers, fawn

anticipation....

2005-02-06T13:19:00.000-08:00

it's actually more fun just waiting for the game. seriously. (I dont want to think about later; it's a warm night, and people in my neighborhood began drinking around noon.) I get so many wonderful wonderful emails, and especially appreciated one writer who begged me not to link a cancer chronicles story to the superbowl. (Hey...great idea! I told him. how about a piece on how people with cancer watch the game compared to "normal" people. erk. just kidding)

now that my latest cat scan (with great results) is behind me, I can go to tomorrow's doc apt relatively light headed...Ive got to learn more tho about the steriod they give me along with the chemo drug taxol. Ive forgotten why, but it's making my thigh muscles act funny and lately Ive noticed that Ive been walking like a stork.

good things and maybes

2005-01-24T15:00:00.000-08:00

the eagles...whooo hoo! what a fun way to spend a snowed in day....but the previous sunday was even more positive. anna and I went to the home of Maureen and Allen Ostapkovich in Marlton, super nice folks who were hosting a fund-raiser for Andy Rose, the young man with Hodgkin's I wrote about several weeks ago....friends plunked down wads of cash, shook Andy's hand and then headed to the den to watch the Vikings game on a mini car sized tv. Andy looked very bald (he bit the bullet and shaved his head) and a bit wan; but the good news is that his chemo is nearly over and he is remission. (next, radiation treatments, which have him worried, but I think they wont be that bad. mine never were.) before this fund-raiser, colleagues at the striped bass (where andy is a food runner) passed the hat and brought him a heap of cash to help with bills. Andy was overwhelmed and touched and so am I.
Im worried, too. or am I? I know Im worried but in fact doing a good job of hiding it as I wait for results from my latest CAT scan when I see my docs tomorrow before weekly (20 weeks already; hard to believe) chemo. good results will show that the chemo is continuing to work; but no matter what, I will still have cancer and will still need treatment. so it's not as if Im anticipating one of these, hooray, cancer gone!, moments. however, even small good news will be great good news. Im on the optimistic side.

bad blogger!

2004-12-24T13:25:00.001-08:00

Remember when we Boomers were in our 20s, and we stopped writing letters, and people said the art of writing to one another was dead? how wrong they were! now it's emails emails emails, blogs blogs blogs...so much to write, so many hours in the day...and I'm a very bad blogger who's been real slow to write down much here...sorry.
first, long overdue is a message to Joan M, who sent me a card with a sketch of the Ocean City Boardwalk...and inside was cash and a wish from her to spend it on something nice for my kids...!
Dear Joan, thank you thank you, but journalists can't accept cash or gifts, and even if they could, I wouldnt. But you are such a sweetheart to think of me and my family. I donated the money to the Northern Lights childrens' home in my neighborhood, and they will use it for Christmas well. just thank you for being a caring person.
More gifts pour in that I won't return - prayers, almost all of them from people who have never met me yet who are promising to spend some private God time praying on this sick stranger's behalf. I continue to be blown away by this and by increasing evidence that there are so many good and generous people out there. I wonder what the balance is: 50-50, good vs bad? actually, it's probably 5-10 percent nasty folks, the rest ranging from nice to wonderful. but of course the baddies get most of the ink.
meanwhile, Im enjoying a fabulous Christmas - fabulous because both my kids (including college son) are home with me. I think cancer patients experience a special poignance around holiday times; just being alive to make a lowly cranberry bread is a thrill. (which is not to say I don't also get cranky and nag; kids will confirm.) I wish I had more energy - either cancer or chemo is making stairs and hills a real challenge; if I overdo, I get annoyingly (scarily actually) breathless. I've scratched the malls off my to-do list (now there's a plus). but Im here, the kids are here, our tree this year is spectacular. I'm trying to grab the little perfect moments and imprint them on my brain for future recall many months from now.
happy holidays to you all
fvrazo@phillynews.com

bad blogger!

2004-12-24T13:25:00.000-08:00

just like everyone else

2004-12-12T13:29:00.000-08:00

Cancer patients have good days/bad days just like anyone else. (and why shouldn't we?) Today, Im good. Mailing 27 Christmas packages (no exaggeration) tends to make you feel invincible! And yes, while Im going through the "this could be the last . . . " thing that cancer patients frequently go through (this could be my last Christmas), at least there's a bright side if that turns out to be true - at least next year I wont have to mail 27 packages again!
Ran across a good new cancer info site I had not heard of before - the NCCN (for National Comprehensive Cancer Network). It's yet another place for solid information on specific cancers, on coping, on clinical trials, etc., and members include some of the nation's top cancer centers, among them Fox Chase Cancer Center in Philadelphia and M.D. Anderson Cancer Center at the University of Texas. Internet address is www.nccn.org or you can call 888-909-6226. (for free).
Here's a request for anyone reading this blog: Im interesting in talking to cancer patients who continue working while they are undergoing treatment (chemo or radiation); some of us do it because we love our work, some because we have no choice. just email me at fvrazo@phillynews.com
time to feel quilty if your own holiday packages aren't in the mail yet!

cancer's tough choices

2004-12-05T16:21:00.000-08:00

Soon I hope to write about the tough treatment choices cancer patients routinely make (different sets of expert docs, all giving out different advice!) But the tough choices Im thinking about today are the lifestyle ones being forced on me by advancing disease.
For alot of cancer patients, let's face it, cancer can be pretty benign, at least at first. In the beginning, most cancer doesn't hurt (that's what makes it so insidious; there aren't any alarm bells in the early stages). And even after diagnosis, the worst pain and debilitation is caused by the treatment, not the disease itself.
But now I've crossed a line: Cancer is making me feel bad, real bad at times, and it's forcing lifestyle decisions I never thought I'd have to make in my 50s. No pain, thank God. But I get tired, breathless, very easily. Too much activity (like, two stores in an hour, instead of one) wears me out and makes me breathe heavily. If I really overdo, like I did this weekend, I might lie awake all night with a rapidly beating heart.
Not to brag, but normally my non stop energy impresses (also annoys) my friends. But cancer is taking that away, week by week. This weekend, I had to choose: see a friend's daughter's play Friday night, OR get up early saturday to hit the Christmas sales, OR wrap the 20-some gifts I mail each year, OR go to friend Colleen's annual party (normally the highlight of the holiday season!) Cancer chose for me: play ok, but skip the early sales, sleep in sunday, wrap half the packages, don't go to the party at all (sob). I'm lucky (am I?) that I can still get around. But I wonder if that's what we cancer patients fear most about our futures - not the pain, not even death, but the point at which we give up our normal lives to become homebound invalids. cheery thought. Tomorrow is another day, as she said in GWTW, and I'll make myself cheer up tomorrow.

it's the day after Thanksgiving and.......

2004-11-26T09:15:00.000-08:00

do cancer patients appreciate life, appreciate the important things in life, more than other people who do not face a life threatening disease? so many cancer survivors who have msged me say that's true. and as I sat at my Thanksgiving table yesterday, holding hands with my daughter and dear friends during a silent Quaker blessing, I found myself grateful for the big stuff: family, friends, just being alive.
but I've also found that it's not that simple - that cancer suddenly transforms you into a human who knows and appreciates the real meaning of life. here I am back at work today, bogged down by the trivial stuff that bogs everyone down - deadlines, dirty dishes, the oppressive need to go shopping and start mailing presents. to tell you the truth, those little things seem waaay more important at the moment than anything else, including cancer and death. and maybe that's a good thing. being distracted and irked by the little things keeps me fully plugged into life (and helps me forget that advancing cancer sets me apart from the trivia-oppressed crowd out there). and for sure, cancer patients don't need even one milligram more of guilt. so if I forget the Meaning of Life for several days and instead worry about dog fleas in my house, I don't give myself a hard time over that.

overwhelmed

2004-11-23T14:46:00.000-08:00

I'm feeling so overwhelmed today. And the great thing is, for a change it's not about my cancer.
I had felt reluctant at first to do a first person story about my spreading cancer (not shy, I just don't think journalists should be writing about themselves), but I convinced myself that it would be a good thing if it served as a springboard for more cancer stories and for giving cancer patients and their families a "voice."
And now Im overwhelmed, and humbled, by the response. Ive lost count of the emails, and to date there have been about 40 calls. Common comment: THANK YOU for saying things about cancer that don't often get said. Like: cancer patients aren't all gloom and doom but often face their dire disease with humor and grace.
Ive heard from patients who deserve the title The Incredibles: Long after doctors (or at least their friends) had given up on them, they were still enduring after many recurrences, and grueling treatments. (Cancer is not for sissies, that's for sure.) I heard from many family members, and for so many the cancer was more painful to them than the loved one enduring it. I heard from selfless volunteers, many of them cancer survivors themselves. And so many people said they would pray for me - a person they had never met! I'm deeply touched by that.

I'll briefly share some inspirational emailed words (out of many many).
Andrea told me about her mother, who has FIVE cancers, all unrelated. "How can she still LIVE? I ask that question every day. I don't need to tell you about the treatments and the surgeries and all of the invasive infusions. I just wanted to tell you that my mother is the epitome of living each day as if it were your last."
Brenda told me how "a brain tumor surprised me for my 30th birthday and thyroid cancer greeted me on my 50th....I've found that my illnesses set me apart from most folks who worry about things that are so tangible and fleeting. My brain tumor was in fact a gift from which I learned my priorities and reality."
thank you all for the responses and for making me feel so good about doing this. Most fellow cancer patients I've met over the years (in fact I could say all cancer patients I've met) have been so eager to share their stories. Please keep emailing and calling. fvrazo@phillynews.com and 215-854-4199.

The 'Cancer Chronicles' begins

2004-11-22T09:40:00.000-08:00

Fawn makes notes while waiting for a blood test before meeting with her doctor. Afterward she would undergo her chemotherapy session.

This is the story, published in the Nov. 21 Philadelphia Inquirer.