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.
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 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.
By: David Haas
Whether you have just been diagnosed with cancer, are undergoing treatments, or are in remission, the benefits of keeping fit cannot be understated. Exercise keeps the body healthy and functioning at its highest capacity, and for bodies fighting a rigorous chronic disease like cancer, exercise can make a tremendous positive difference.
When my doctor first told me I had mesothelioma, I felt like there was nothing I could do, but he encouraged me to get off my sofa and start exercising, even for a short time daily, so I could make a positive change. Conventionally, healthcare professionals have encouraged cancer patients and survivors to ‘take it easy,’ but Ciaran Devane, chief executive officer (CEO) of Macmillan Cancer Support, stated in an article posted by CBS News that patients would be shocked to know the benefits of physical activity on their recovery and long-term health.
Decreased Risk of Recurrence
Studies indicate that for those who have beat cancer, exercise can help keep the disease from coming back. In a recent article posted by webMD, Kerry Courneya, professor from Canada and research chair at the Physical Activity and Cancer organization in Edmonton, Canada, stated that not only did exercise reduce the risk of recurrence, but it also ensured a longer survival after diagnosis.
Elevated Energy Levels
Exercise is known to reduce fatigue and increase overall energy levels. It also increases stamina. Cancer treatment can be rigorous, and exercise helps build the muscle and stamina needed to better withstand its effects on the body.
Improved Quality of Life
Exercise reduces the risk of other chronic illnesses, like cardiovascular disease and diabetes, while decreasing the risk of other health issues, like osteoporosis and depression. It also enhances mood by releasing serotonin, a ‘feel-good’ chemical in the brain, and produces an overall positive feeling of well-being.
Even a little effort at fitness can go a long way while living with or beyond cancer. It doesn’t need to be anything too strenuous. Small choices like taking the stairs instead of the elevator, gardening instead of watching television, or walking the dog instead of playing a computer game make a tremendous overall positive impact on living.
Thank you, David, for this reminder that exercise is powerful medicine!
Regarding the the unofficial good news I’d received about my MRI results on Tuesday, I wrote:
(But you know what? There’s a teeny tiny part of my brain thinking that someone might call and say, “nevermind, there is something wrong,” and, in the spirit of being totally honest, I must admit this.)
Well, someone did call today, a someone who gave me the official good news that my MRI was normal, that the wonky results that showed up the first time around were, in fact, due to hormonal fluctuations.
OK, I feel better now.
(Next up on the imaging front is a routine mammogram in June, then another routine MRI in November.)
.Seven years ago yesterday.
On November 23, I had a biopsy. A large needle was placed in my breast and a piece of the lump was pulled out. The surgeon had a hard time getting a piece, however, because it moved around so much. He said this was a good sign, the movement. He sent the tissue to pathology and told me to call his office the next afternoon for the results.
.Seven years ago today.
The next day, November 24 and the day before Thanksgiving, my phone rang at 10:00 a.m., and the doctor who did the biopsy said the pathology report was back already. He said that unfortunately, cancer cells were found. He said I would need a lumpectomy (surgery to remove the lump), radiation, and possibly chemotherapy. He told me to buy a book called Dr. Susan Love’s Breast Book. I got the book that day.
- Your MRI will pick up everything. Great if you have certain types of breast cancer, because they will likely be detected, and this could save your life. Bummer if it’s not cancer, because you’ll be forced to chase it down like it is cancer in order to confirm that it’s not, and this could take a really long time, and even if it doesn’t take a really long time, it will seem like forever, and you will worry and fret and panic until you find answers.
- Your MRI should be scheduled for a day that is between something like seven and 15 days after the onset of your period. This is very important. Should you schedule off this track, your MRI (remember, it will pick up everything) will zero in on all sorts of hormonal tissue changes, and this could lead a concerned radiologist to indicate in test results that “malignancy is considered.”
Get where I’m headed here?
In a nutshell, I caution you to (a) realize MRI is a very sensitive screening tool, and (b) make sure you are scheduled properly when you plan to use this very sensitive screening tool. If (a) and (b) converge, you might have a stressful time on your hands, like I just did.
Why for my past five MRIs no one has ever asked about my cycles when scheduling me, I will never know. And WOW, how lucky I’ve been for all those five times to not have happen to me what happened last Thursday. You see, my period started the day after my last-week MRI, and it looks like this just skewed everything. Yesterday’s MRI, though, implemented properly, apparently showed that the worrisome issues had resolved.
You just can’t imaging how relieved I am, given the fact that seven years ago TODAY, I had a biopsy for a lump I’d found in my left breast. The next day, the day before Thanksgiving, a doctor called me to say, “unfortunately, cancer cells were found.” That just can’t happen twice, with such precise timing.
It just can’t.
And it didn’t.
Now is when I get to declare that I am the happiest girl I know!
(But you know what? There’s a teeny tiny part of my brain thinking that someone might call and say, “nevermind, there is something wrong,” and, in the spirit of being totally honest, I must admit this.)
The re-do MRI is over, and I fully expect I will get a call in the next day or so from a medical someone who will declare it normal. I really do believe this, even though there were machine technical difficulties this morning requiring a start and stop and start again, an interruption to fix one boob that might have been receiving too much pressure in the apparatus in which it hung, and marks on my body from said pressure that I never noticed after my past five experiences in the tube. Surely, none of that will matter, because my sense, really and truly, is that this whole scare that’s been going on is just a fluke, a false alarm, bad monthly “cycle” timing, something other than the “malignancy considered” wording that appeared on the first MRI.
I’m sure I’m right. I just need someone to confirm it for me.
Today, I met with a breast surgeon to review what’s happened over the past almost-week. To recap:
- there was the annual MRI.
- then the MRI report featuring the awful words “malignancy considered.”
- then three days of pure worry (and lots of well wishes and prayers).
- then an ultrasound that prompted docs to utter the happy word, “benign.”
- then another couple of days of pondering it all.
- then this afternoon’s consultation with the guy who operates on women with breast cancer.
First of all, who knew the gowns had gotten so lovely in the past seven years. Wow, check out my beautiful blue poncho-style paper cover-up, complete with hanging-open sides that are just perfect for peering in at boobs and muffin tops. It didn’t really matter, though, how substantial that pretty paper is because in a matter of minutes, I was on the exam table, boobs fully naked and prime for examination. And here’s what I learned about the troublesome twosome:
They feel fine. No lumps, bumps, masses, or tumors. No thickening or dimpling or other changes in the skin. Maybe a little nipple redness (we’ll monitor that). No swollen lymph nodes. No infection. No inflammation. No apparent cause for concern.
The game plan: The surgeon will review my MRI and ultrasound Monday morning at a weekly “breast conference,” where all sorts of doctors converge and weigh in on cases. While he’s at the meeting, I’ll be getting a re-do MRI, and he says if it looks better than the first, we’ll sum up that I am A-OK, and I will check back with him in January. If it looks the same as the first, we’ll call it a mystery and continue digging by way of MRI-guided biopsy. No matter what, I’ll watch the nipple (not, like, every two minutes, though, the surgeon said), and I’ll report any continued or worsening redness.
I learned so much from the surgeon today, like if I ever get cancer in my right breast, it won’t be a spread of the cancer I had in the left breast, because cancer doesn’t spread from one breast to the other. It would be another new cancer, and the chances of that happening are something like .5% per year.
I also learned that MRI catches more than 95 percent of invasive breast cancers (there are others, but these are the types that present as lumps). Awesome, right? Of course it is, but the bummer side to the story is that MRI picks up everything else, too. And what the heck does one do about that? Chase it all down, that’s what, just like I’m doing right now, to see if the iffy stuff turned up by that loud and annoying tube is cancer-related in any way, shape, or form. No fun, I admit, but it’s a necessary evil — unless of course, the boobs go away, which is totally an option, and thanks so much to everyone for sharing opinions on whether or not I should just chop the breasts right off (well, the surgeon would do it, not me). Still thinking on that one, but I’ll keep you posted.
Today was a good day. No pure worry, but still plenty of well wishes and prayers, and news that is more hopeful than not.
Oh, and to make the day even better, the skin biopsy I had last week came back normal. I didn’t see that coming at all, but what a treat!
Initial news is good: no mass, tumor, lump — ultrasound showed a bunch of dense and enhanced tissue + a lot of shadows. What does that mean? Not sure, so ultrasound doc will follow up with doc who read MRI, and she will compare with my previous MRIs to determine what exactly has changed and if there is anything to biopsy. If not, a repeat MRI will probably be scheduled. Surgeon will also be looped into the mystery. So, while I did not get a definite “everything is fine,” I am at peace knowing there was nothing alarming discovered!
“I’m sure you’ll be in a suspended state until you know.”
Credit for these words, which are so fitting for my situation, goes to Anna. She’s my boss, a faraway friend, someone I’ve never even seen in person — that is so strange, isn’t it? The virtual world makes it possible for me to work at home in Florida with a staff of others who fill a New York City office building. I am so lucky. (Not to have never seen Anna, of course, just to have the great gift of working in my house so I can be a professional and a mom.)
So, if you have not read the posts that come before this one, I am waiting. waiting. waiting. for an ultrasound (hopefully on Monday) that will give a second look at a “new conglomerate of small enhancing foci in the retroareolar region” of my right breast (not the one where I’ve already had breast cancer) and a non-mass-like something in the posterior of the same breast. Malignancy and infectious/inflammatory etiologies are considered, says the MRI report.
The MRI I had on Thursday was just a routine follow-up — a test that was supposed to reveal I am still cancer-free.
Maybe I am still cancer-free. Maybe I’m not. The ultrasound, and probably a biopsy, will flesh it all out. While I wait for that second look, though, I’m sorta just going through the motions and hanging in a balance. I’m up and down, and, well, this is what I feel:
There is still plenty of happy in my world, though. I mean, how can I not count my blessings with a boy who is willing to dance his little heart out at the Gator basketball game last night just to get on TV (and in the newspaper).
1. Incomplete MRI of right breast with new conglomerate of small enhancing foci in the retroareolar region and non-mass-like enhancement of posterior breast as detailed above. Malignant and infectious/inflammatory etiologies are considered. A second look with ultrasound is recommended to evaluate for discreet lesion that would be amenable to biopsy. If ultrasound in unsuccessful, MRI-guided biopsy should be considered.
2. Normal left breast MRI.
Next up: ultrasound, early next week.
Funny thing: seven years ago, just before Thanksgiving, it all happened pretty much like this.
Of course, it could be nothing.
Or it could be something.
I just want to know.