Says the artist about his iPad sketch, “Relevancy” is about how words are taken for granted until something urgent happens.
For me, cancer was just a word — until it crashed into my world. Now, the word has relevance in everything I do.
What word have you taken for granted that now has relevance?
I remember prom like it was yesterday (I think my date probably remembers, too, considering the display of my way-too-big boobs in that white strapless dress), and now, somehow, today is birthday No. 42. Gosh, the time has just disappeared. So have the big boobs, which were reduced in 1996. Funny things, those boobs. They tried to kill me. That was back in 2004. Now, it’s 2012. Eight birthdays since cancer. I love that.
About a year ago, I went to see my OB/GYN for bloating, cramping, and pelvic pressure. I was sure I had ovarian cancer. I didn’t. My doctor sent me to a internist. She tested me for celiac disease. Nope, not that, either, although I did follow a gluten-free diet for a couple of months thinking maybe it would help. It did not. There were other tests I could have taken — one would track an egg moving through my body — but my tummy troubles subsided, and so did my pursuit of an answer.
Eventually, the discomfort came back, then it went away, and this has been the pattern for quite some time now. If I eat healthy, my stomach sometimes hurts. If I eat junky, my stomach sometimes hurts. Often, the pain is so great it makes me want to cry, and at night, I curl up in the fetal position and will myself to sleep. I usually feel better in the morning. To try to cure myself, I’ve played with what I eat and how I eat. I’ve found some recipes that soothe my system — my favorite is a brown rice cake with peanut better and sliced red grapes on top — and I’ve eliminated a few items I believe were twisting up my insides (lettuce). Still, although I can go weeks without symptoms, they always sneak up and cause me at least a day’s worth of sick. This is why I contacted the internist again. She referred me to a GI specialist. I saw her today.
My new doctor believes the culprit might be chemo drugs, which could have mucked up my system. Antigen was the word the doc threw around, and she has ordered a bunch of blood tests, plus a surgical procedure to take a biopsy of some of my intestines and stomach. I will also submit to another test, which will hopefully explain some issues that might be related to my big ‘ol babies (10 pounds, 9 ounces and 10 pounds, 2 ounces). They probably did a number on my pelvic health, my GI friend said, so this test will help investigate further.
I went to the doctor today hoping she wouldn’t just throw meds my way in an attempt to mask what’s going on. She didn’t. For that, I am grateful. She wants to locate the cause of my complaints — I like that. I also went to the doctor today in no way suspecting cancer treatment might come up the guilty party. I’m not surprised, though, because cancer never really goes away. It might not be threatening my life right now, but its presence is always with me.
Beating cancer is half the battle. Living with its aftermath is the other half.
I’ve been following Dr. Susan Love‘s wisdom ever since I was diagnosed with breast cancer in 2004. Her book was the first I’d consulted in search of answers to scary questions, like, “What are my chances of living long enough to see my little boys grow up?” and “Can I have more babies after breast cancer?” and “Why did I get this crappy disease, anyway?” She told me that I had a pretty good chance of surviving, that many women do go on to have kids after breast cancer, and that given all the details of my personal history, I was likely just a random victim of cancer. Now, the woman who taught me so much has been diagnosed with leukemia. She tells her followers she will receive treatment over the next few months, and she fully expects to rise above this challenge. The business of understanding breast cancer will go on at the Dr. Susan Love Research Foundation, she declares, and she welcomes well wishes from anyone who wants to send some her way.
Be well, Dr. Susan Love!
I like to change things up now and then, and I love, love, love simplicity. That’s why I’ve launched a little redesign of this blog. It’s pretty plain, I know, but I kinda like that. I don’t like clutter and scatter. Minimal makes me happy, and if you could see my kitchen counters, you’d know what I mean (they are pretty bare).
I’m also a fan of how readers can easily scroll headlines in this new format without viewing a post in its entirely. Just read a small snippet of a story, then click on your desired title to roll out the whole story. Or course, you can also search topics under My Categories on the right-hand side of the screen.
Crisp and clean is my goal when I write, edit, and create, and I think this site delivers — do you?
I was interviewed recently by a writer at Healthmonitor for the new Guide to Chemotherapy. It’s the kind of mini-magazine you’ll find in a doctor’s office, so be on the lookout because you just might spot the glossy guide while you’re waiting, waiting, waiting to see your medical people. The 36-page publication (which is free, and you can grab one for home) is filled with so much wisdom — chemo questions are answered, side effects are addressed, nutrition is covered, date nights are encouraged, and there are two pages devoted to a piece of my story. The article, called “Circle of support, chain of love,” is about my blogging (and my wig sharing), and if you wish to read just a bit of my almost-eight-year-long journey, this is your chance. Just click, navigate to pages 22 and 23, then read.
I know I’m not around here much anymore. I apologize if you keep coming back hoping to find new content and inspiration. It’s just that I’ve been working, and, now, I spend much of my time over at Just Edits — my new-since-March one-stop edit shop, “where you hire me to clean up your copy, and I teach you tips and tricks sure to make you look super smart.” Please bookmark me at justedits.org, and stop in anytime — you won’t find much in the way of breast cancer material, but I will tell you exactly how to use periods with closing quotation marks and how to properly place apostrophes for last names that end in s. Come “Like” me at Facebook, too.
Breast cancer — important stuff, yes, and I promise to come back when I’ve got meaningful stuff to say. Proper grammar — pretty important, too, I think, and that’s why I’m making a career out of correcting the written and spoken mistakes of the world. Well, some of them, anyway.
This is so very awesome — a free summer camp run by college students for kids with a parent who has (or has had) cancer. Don’t know a whole lot about the camp, but it’s called Camp Kesum, it’s offered in several states (Florida!), and, well, click on the link, see for yourself, then pass it on!
It’s been on my head.
It’s been to Melbourne, Florida — twice.
It’s been to Akron, Ohio.
And off it goes now to Vienna, Virginia, where newly diagnosed Michelle will wear this wig once chemo takes full effect. Michelle, just now recovering from a mastectomy, is a married, working mom of two little boys, ages 1 and 4.
Michelle found me via this blog and reached out to ask some questions — several of which were about hair. She liked the look of my “underhair” — cotton on top, human hair around the sides, meant to be worn with hats — and she was thinking of getting such a cover-up for herself. No sense in that. I have a perfectly good one crumpled up in a box in my closet, I told her, and I pleaded that she let me send it to her. She accepted, so I shampooed, conditioned, dried, flat ironed, and topped with a bucket hat. Next, I’ll box it up and mail it off. She should have it in a few days, just in time to bring her some comfort before her own blond hair is gone.
Gosh, this hair tells such a story — I ordered it because I’d tried on a few traditional wigs, and the way they framed my face screamed, “She’s wearing a WIG!” Desperate to look like my own normal in the midst of cancer chaos, I loved the thought of a ballcap on top of hair that looked real. A hundred bucks (plus) later, I had in my hands a perfect solution — the not-scratchy, cottony-soft, blond-like-my-own-hair fix that was so believable a neighbor once commented on how great it was that I had not lost my hair. I attribute the facade to the human hair, the perfect shade of color, cut to just the right length, and looking fresh and clean and bouncy thanks to the recommended Frizz-Ease products.
This wig, which ironically looks nothing like my hair now (chemo can change the color and texture of hair), brought me peace when my world was crumbling.
I think it will do the same for Michelle.
And for whoever is in line next to her.
It’s about lung cancer — a disease with a survival rate of 15.5%.
In case you haven’t heard, that just is not acceptable.
Good news is that you can help change such a sobering statistic, and all you need to do is register for Run Amuck with the Duck and either walk or run a 5K.
It all happens in Gainesville, Fla. on March 31, 2012, and in the event you are not local (I realize many of you are not), then perhaps you can make a donation (even small contributions make a difference) to help fund a cure for a disease that is affecting Dianne Caridi, a young woman here in town. She and two other survivors are the girls sponsoring the event, and I know they would appreciate any support you can offer.
So, please think about (1) registering for Run Amuck with the Duck, (2) donating to Run Amuck with the Duck, and/or (3) spreading the word about Run Amuck with the Duck (feel free to tweak and republish this post).
UPDATE, 2/3/12: Dianne Caridi lost her battle with lung cancer.
I asked my breast surgeon today for his thoughts on mastectomy for someone in my boat:
- early-stage breast cancer.
- no spread to lymph nodes or anywhere else.
- lumpectomy + chemo + radiation + Herceptin.
- seven years survival.
“Definitely not,” he told me. “You’ve come too far, and you are doing so well.”
Plus, I am constantly monitored, and, at this point, my chance of developing a life-threatening breast cancer is slim.
There’s just no need for a such a drastic and major surgery, he said. The resident on service with him agreed.
I told my doc that it seems a trend that woman are removing their breasts after diagnosis rather than saving them when conservation is a real option.
“It is a trend,” he said, sharing that he spends lots of hours in lots of meeting discussing why women are moving in this direction.
If not medically necessary, mastectomy is just not something he supports. He even advises women who do need mastectomy for cancer in one breast to not remove the other one. Why? Because lopping off a healthy breast does not up the odds of survival.
Never did I actually want to cut off my breasts — I just wondered if it was a wise move for someone like me. The majority of readers who responded to my November poll Mastectomy — Do It? Or Too Drastic? chose “Do It.”
But my surgeon picks “Too Drasic,” and so I’m gonna roll with his wisdom.
PART I is here.
PART II is here.
And what follows is PART III. (the last one.)
What does cancer feel like?
>like I’m lucky. The drug Herceptin is approved for use in early-stage breast cancer patients, and I get in on it right before my window closes (it must be give a certain amount of time beyond chemo, but not too long after). I sign up for one year of this drug therapy, and I report for infusions every three weeks. It does not make me sick, I do not lose my hair, and research says it can prevent my chance of recurrence by 50 percent.
>like hair confusion. My blond, straight hair goes away, and dark curls take its place. I start liking my new hair better then my old hair, and, over the years, it gets straighter and lighter, and I realize I want to keep the dark but not the curls. I invest in a flat iron, and I find a stylist who helps me try to keep it dark (but it’s hard because the blond wants to come back).
>like I have a purpose. I’ve been blogging since diagnosis to keep friends and family informed of my progress, and other people are finding me — like other survivors and loved ones of cancer patients and editors asking me to write for pay. I end up with a writing and editing career because of cancer, I get a few speaking and radio engagements, and the disease begins looking more like a gift than a curse.
>like an inspiration to live stronger and healthier. I go on assignment to Canyon Ranch in Tucson, Arizona, and I write about surviving after breast cancer. The trip inspires me to eat clean and exercise hard, and I lose 15 pounds and gain the momentum to run a 5K, then a little more, then a half marathon.
>like repulsion, marked by the inability to eat for five years any of the foods I consumed on each of my chemotherapy infusions.
>like a chance to help fund a cure. I raise thousands of dollars over the course of a few years for Making Strides Against Breast Cancer.
>like a routine. I attend follow-ups with doctors, I get mammograms and MRIs, and I hunt down every symptom I have that may or may not be worth chasing because I’m crazy like that now that I’ve had cancer. A headache is not just a headache, and a sore arm is not just a sore arm. If you’ve had cancer, you understand that every bump and lump and twinge of pain is just another cancer waiting to be discovered.
>like an out-of-the blue scare when the MRI at seven years survival shows a “malignancy considered” and sends me into a week-long tailspin.
>like I learn something new every day, like that my MRI mental breakdown could have been prevented had I been properly scheduled for the test — NOT during my cycle but seven to 11 days out from onset of period, because MRIs pick up everything, like hormonal tissue changes that might appear to be cancer, and why, oh why, did someone not ever tell me that before?
>like an on-going process that does not end when the doc says, “you’re cured, go home.” In the next year or so, my heart will be monitored because the life-saving Herceptin can cause heart damage, but it doesn’t usually happen for years and years, and, so, my ticker will undergo some testing to determine just how fit it is.
>like survivor’s guilt, because I have been given seven years so far, and people like my friend Amy don’t get nearly that much time.
>like a chance to help others. That is why I keep writing this blog all these years after cancer tricked me into thinking I would die long before my babies, now 11 and 8, could grow up. And that haircut? Yep, just a haircut. I did not die. I am alive and well, and I want YOU to know that while cancer caused me plenty of dismal and hopeless days, I can count many blessings bestowed upon me by a life-threatening disease no young mom of wee ones ever thinks she will get. Will I be mad if cancer comes back? You betcha. But for today, I’m going with blessed. Just blessed.
And that is how cancer feels.
There is a PART I to this series, and if you have not already scanned the list, you can find it here.
And now, here goes PART II:
(there will also be a PART III)
What does cancer feel like?
>like I’m frozen riding in the car to my very first chemotherapy treatment. This is not happening. It can’t be happening. Please don’t make me go.
>like scream-out-loud pain when the large needle pierces the port that sits inside the skin on my chest and frustration that no one told me I could numb the skin on top of my port with a simple little cream available at Walgreens. I order the cream as soon as I get home from Chemo No. 1.
>like a major science project the way the drugs must enter my body — fluids and pre-meds first to help prevent nausea and allergic reactions, then one chemo drug, then another chemo drug, then a flushing of the line.
>like not much of anything post-first-chemo. The outdoor power walk with my mom once I get home is no different than others I’ve taken pre-cancer.
>like a nervous flutter when my nurse neighbor gives me a shot of Neulasta the day after chemo to help ensure my blood counts don’t drop. But will they drop? And what happens if they do drop? Will I be OK if they drop? How will I know if they drop? My friend gives me a shot the day after each chemo trip, and I get four in all.
>like a terribly tender and sore scalp, as each blond hair on my head weighs a ton and wants desperately to tumble to the floor. I hold it in place with a hair band and a ball cap, and I attend Chemo No. 2 denying that I will need to shave my entire head at the end of the day because the pain will be too great, and the mess in the shower and on my pillow will be too much.
>like a horrible misery as my almost-4-year-old shaves my head, and I begin to look like someone I do not know. “It’s only a haircut, mommy,” he tells me. “You are not going to die.” I hope like mad that he is right.
>like engulfing self-consciousness — I hate my bald head, I don’t want to look at it, and I don’t want anyone else to see it. I cover it with wigs and hats and am only happy when a neighbor tells my sister she can’t believe I have not lost my hair. My cover is a success.
>like a strong community. The chemo infusion room is filled with warmth as patients from all walks of cancer share stories. Misery loves company, and the company makes cancer not so miserable. The guys who sing to me are pretty cool, too. (Click on image to right to view video.)
>like love. My mom and baby niece Jordan sit with me for every chemo treatment, and friends stop by, too. Some bring flowers.
>like my kitchen cabinet is a pharmacy. OMG, all the drugs.
>like I’m getting fatter and fatter. The steroids that prevent allergic reactions to chemo drugs make me bloated and constipated, and the zipper on my favorite Lucky jeans won’t go all the way up. When chemo comes to an end, I will have gained nearly 10 pounds.
>like I’m out of my head. I am incoherent after the fourth chemo dose. I am confused, irritable, and I am not even sure what words are coming from my mouth. I call my oncologist and tell her I don’t feel well. She tells me chemo is tough stuff, and I need more support. Nope, that’s not what I need. I need someone to revive me, because my blood counts are now 700, and they should be between 4,000 and 10,000. I learn this the next morning when I am admitted to the hospital where the doc should have sent me the night before. I am thankful I survived the night at home, and it takes five days in the hospital, a bunch of IV antibiotics, and a blood transfusion to kick-start my weak body.
>like itching and scratching and bumps climbing all over my shoulders and back. I am allergic to the antibiotic cefapime.
>like good news when I learn the results of my genetic test are negative.
>like I am in good hands when I get a new oncologist who is warm and kind and lovely and tells me I do not need the drugs Taxol or Taxotere — the poisons my chemo-is-tough-stuff oncolologist said I needed. I knew I didn’t like her.
>like a repeat performance when I land back in the hospital after another drop in blood counts. Another five days, marked by the possibility that I may have another cancer (false alarm), and I leave after injections of growth hormones launch me back into gear.
>like a small reprieve as chemo ends and I wait for radiation to begin. I now have tattoos — no butterflies or chain links wrapping around my arm, just a dozen tiny, blue pin pricks, and I’m also inked with magic marker all over my chest to aid in the simulation of what’s to come — 30+ days of zapping, five days a week for six weeks.
>like monotony, the drive to and from each radiation session, the undressing, the reclining on a table, the breathing through a tube and holding my breath to move my heart out of the way of danger, the watching as beams of radiation circle and shoot at my body — the routine of it all gets real boring, real fast.
>like guilt because my mom watches my boys every day I report to the place that slowly but surely scorches my skin, and the older boy is not exactly an easy one, and I worry I am asking too much of her — and my husband, who works all day, finds me like a lump when he gets home and must muster up some dinner, or visit me in the hospital, or play with little boys because I have no energy.
>fatigue. I doze off every afternoon at 3:00 p.m., because radiation is tiring. I don’t know why, it just is, and it’s really hard to get off my butt to go to physical therapy for the prevention of lymphedema and to restore range of motion when I just. want. to. sleep.
>like Oh, No, something is wrong with my lungs now, because I’m breathing in through this tube, and I can no longer hold my breath. The smart science people investigate and learn there is just a hole in my tube, not an issue with my lungs.
>like I am a weeping mess. I cry at the mere mention of my cancer, and my doctor recommends therapy and an anti-depressant. I accept, and I spend a year and a half with both.
>like calm. Therapy and Zoloft work. I am much more at ease about my condition, and dirty dishes piling up in the sink don’t bother me as much, either.
No one has ever asked me, “What does cancer feel like?” I’m not sure too many people really want to know the answer, and, so, it makes sense I have not been queried on this topic. Someone did ask Donna Peach what the disease feels like, though, and while she did not share her whole response with the questioner, she did pour out her thoughts in writing, and, WOW, her words are really, really powerful and really, really sobering and really, really eye-opening.
I told Donna I was going to take a stab at answering the same question. Here goes:
What does cancer feel like?
>like a disease I can’t possibly get at the age of 34 (even though there is a bump of some sort in my left breast) because everyone says young women do not get it, and I have two kids, and that would just be really cruel if I had to deal with a life-threatening disease and the overwhelming demands of a 3-year-old little boy and his 18-month-old brother.
>like paralyzing fear when the doc says about the bump after an ultrasound, “I want that out and in a jar.” I ask, “Could it be cancer?” She says, “Yes.”
>like an impossibility when the biopsy surgeon tells me it is hard to locate by needle, it moves around too much. Good signs.
>like a death sentence when surgeon reveals over the phone that the lump I found while washing in the shower is, indeed, breast cancer.
>like a chest-caving and gut-sinking reality after learning that my treatment line-up will include, in addition to surgery, probably radiation and chemotherapy.
>like the worst sting ever. Chemotherapy. Nooooo!
>like a show-stopper when I tell the mom of the child I watch a few days a week that I can no longer care for her baby girl.
>like a disabling case of the blues as I join family members for a day-after-diagnosis Thanksgiving and stew in my own misfortune.
>like anxiety so severe sleeping pills are prescribed, although I only take one because I hate drugs.
>like anger over the realization that medications will likely spill through my body and poison me and take my hair.
>like panic as I am rolled into surgery not knowing whether I will come out with one or two breasts.
>like relief when I discover I have two breasts.
>like hope when I learn the tumor is small, lymph nodes are not involved, and the margins are clean.
>like a ray of sunshine when the surgeon tells my mom I may not need chemo.
>like jump-out-of-my-skin pain when the tape used to bandage my parts post-lumpectomy melts into my skin. Doctors have never seen anything like it, and they prescribe Xanax, although I only take one because I hate drugs. I learn I am likely allergic to Tegaderm tape and latex.
>like a waiting game — waiting for appointments, waiting for test results, waiting to feel better, waiting all the time.
>like deflating disappointment when surgeon tells me my tumor is 1.1 cm, and chemo is typically given for masses larger than 1 cm, and because I am young, and young women tend to have more aggressive tumors, my treatment will be harsh. Docs even plan to speed up the delivery of toxins, infusing every two weeks instead of three because this seems to be more effective (if the patient can tolerate it).
>like confusion when I read my pathology report and try to make sense of stage and grade and ER and PR and HER2 and more.
>like out-of-control fear, especially at night when I peek at my sleeping babies and imagine a life for them without a mom.
>like an overwhelming love and warmth from the people in my world and their emails, letters, cards, meals, gifts, visits, and support.
This is the conclusion of PART I, not because I don’t want to keep writing, but because I’ll spare you more yuck for now. Granted, there is some good sprinkled in (like relief and hope and love, as mentioned above), but cancer kinda just feels crappy for a good long time. It can get better, though, and it did for me, and PART II will surely be a little more cheery. Or maybe PART III will be.