Welcome

Hi Everyone —
If you have made your way here, you probably already know that I was recently diagnosed with what is hopefully early stage breast cancer.  My ever loving and technically savvy brother Dale helped set this site up so we can distribute news and not-news easily to all of you caring friends and family out there.  It has already been 3 weeks since I heard my biopsy result so I think I’ll spend the first few posts recording what has happened since then.

Susan

Mammograms Don’t Catch Everything (At First … But Maybe Eventually)

[Disclaimer: If you are a female over the age of 40 or know any females over the age of 40, regardless of what you might interpret from the above title, remember that mammograms are essential!]

After I finished nursing our now 4 year old, I had already passed my own 40 year mark and it was high time to get the mammogram train moving.  I went in for the screening mammogram and went home thinking the whole process was uncomfortable, less than dignified, but not torture and something I could handle again in the future.  That was fortunate because Kaiser called me back just a couple of days later for a diagnostic digital version so they could really zoom in on calcifications, little bits of calcium suspended in my right breast.  Upon closer examination, the radiologist declared me healthy and I went on my merry way.

Fast forward 6 months to Fall 2010.  Now 43, I am a bit lumpy on my right breast, which the physician’s assistant in Kaiser’s Breast Clinic has attributed to normal fibrocystic changes and (relatively) young dense breasts, common non-threatening symptoms for many women.  They don’t do another mammogram, as I’m not due until April, but send me to the ultrasound department for a check.  Everything’s A-OK.

Fast forward another 6 months to March 2011.  It’s time for a check-up in the Breast Clinic. The same physician’s assistant seems less sure about her diagnosis of fibrocystic changes and breast density, but still doesn’t seem alarmed.  We schedule a mammogram for April 19th, just a few days after I return  from a relaxing family spring break trip via RV in Death Valley.

On April 20th, I receive a call from Kaiser’s imaging scheduling department.  They want me to go back for another diagnostic scan.  I’m now a pro with this and go in, a little nervous but thinking they’ll just say the calcifications are happy, few, and round;  however, no luck there.  They tell me the calcifications have greatly increased in number, shape, and size since last year’s mammogram.  They want me to have a biopsy.

Biopsy = One Mean Needle (Skip if You’re Trypanophobic)

Ok, I have now donated countless gallons of blood over the years and am not afraid of needles.  But I do have to say the stereotactic biopsy needle was a meanie.  Once I arrived at my appointment, my physician explained the process, positioned me on top of a table with a hole for my breast to fall through, and took a series of mammograms. This part was actually much more comfortable than a regular mammogram because you have gravity to work with instead of against, so vise-strength breast positioning is unnecessary.  I was so comfortable I wished they’d let me get my Kindle to help pass the time.

Next they administered anesthetic topically and then through a needle, again no big deal.  At this point, I think they could have waited just a wee bit longer for the medicine to really take effect because when they shot the biopsy needle in with what sounded and felt like a construction nail gun, I realized that it felt like a large needle was being shot into me with a nail gun.  This I could feel, not a huge amount, but enough to know I really, really didn’t like it.

It seemed like the needle then rotated and suctioned out six 1cm spaghetti like pieces of tissue and I was almost home.  Several more scans, insertion of a locater clip in the biopsy site, and lots of praise for me for being a model patient (read: no peeps).  The entire process took maybe 40 minutes.

April 27th: Getting my Ducts in a Row

I was not shocked.  Sitting in my car parked in front of our 4 year old’s preschool,  I answered a call from the Surgery Department.  The biopsy was malignant, technically Ductal Carcinoma In Situ (DCIS), a Stage 0 noninvasive growth in my milk ducts.  I took the news calmly trying to recall as much as I could from recent internet searches on breast cancer and remembered to ask which grade mine was.  My biopsy had nuclear grade = 3 which meant I have an aggressive, fast-growing version.  The nurse told me the typical treatment for DCIS would either be lumpectomy with radiation or mastectomy.  Long-term survival and  cure (!) rates for DCIS are very high with proper treatment.  It is theorized that lower grade cases of DCIS  in some patients might never turn into invasive cancer or even be detected.

The nurse was surprised that I was taking it so well.  Inside, I was resigned, sad, but in an odd way, relieved.  No, I didn’t really look forward to having portions of my body removed.  But I’ve already given birth to 3 beautiful children and subsequently had loving, bonding nursing experiences with them.  Quite frankly, my breast is now an appendage that I don’t really need anymore, and if I had to have something removed, it wouldn’t be a bad option at all.  If it is truly DCIS, I got off easy, breast cancer-wise.  I am lucky.

May 4th: Time to Meet my Oncology Team

Kaiser Permanente is a well-oiled health care machine.  At that same phone call letting me know my biopsy result, I was scheduled for a breast cancer class and private consultation with my entire oncological team the following week.  I wouldn’t have to go searching piecemeal for surgical, chemo, and radiation expertise and if I wanted someone different from my assigned team, I could choose from other physicians.

On May 4th, Earl and I headed to our appointment.  Upon check-in I received a thick folder replete with information about breast cancer from diagnosis to surgery, recovery, adjuvant treatment, and beyond, as well as my complete pathological report for my biopsy.  We were then shepherded into a meeting room along with 2 other patients and their respective partner/friends/families.  As a group we all viewed an instructional video about breast cancer and then were introduced to representatives from the different departments where we would be receiving care.  Simultaneously, our medical team was meeting in a different room discussing our case histories and planning our treatments.  After the video we were separately guided to examination rooms to meet with our physicians.

My radiation oncologist, Dr. Seaward, was the first to arrive.  She quickly stated that I would likely not need radiation.  Due to the large size of the DCIS in comparison with the size of my breast, a lumpectomy with radiation would not be advisable.  A partial mastectomy would be possible but with poor cosmetic result.  So mastectomy would be the recommended treatment with radiation appropriate only if invasive disease or an affected lymph node was detected.

After Dr. Seaward left my medical oncologist Dr. Jeske visited.  My stress level rocketed while she explained that my high nuclear grade paired with the “extensive” calcification area viewed on the mammogram was “worrisome.”  This could indicate an invasive element lurking in the suspect 5 cm area.  Also, because of my young age (<50) paired with my mother’s ovarian cancer history (coming up on 5 years of survivorship now), she recommended genetic testing for BRCA 1 and 2.  She also suggested that I have an MRI of both breasts done to make sure there was nothing going on in the left breast.  Lastly, Tamoxifen would not be an option to help prevent recurrence because my pathology report said the cancer is estrogen and progesterone receptor negative.

The last to visit us for the afternoon was Dr. Kavanagh, my surgeon.  She calmed my nerves somewhat, saying that an affected area measuring 5 cm would not be unusual for DCIS and the estimated oblong shape was consistent with ductal travel.  However, the area size in combination with my young age (again, <50) did make her suspicious of invasion, and she said that she would be performing a Sentinel Lymph Node (SLN) biopsy during my mastectomy.  In an SLN, the cancerous area is injected with a radioactive substance or dye;  the lymph nodes first detected with those substances are removed and promptly checked by a pathologist. If my first lymph nodes are clear (no cancer), that is very good news.  If not, they’ll have to remove several more lymph nodes and that changes my post-operative treatment and prognosis.

She sized up my situation roughly as follows:
50% probability – pure DCIS (noninvasive, Stage 0)
40% probability – DCIS with microinvasions (invasive cancer) present
10% probability – DCIS with tumor(s) >1 mm involved, Stage ???

Interestingly, Dr. Kavanagh said that  it can take 9 years for one mutated cell to turn into a 1 cm lesion.  This cancer has been in my body for a long time.

It had been a long, emotionally volatile afternoon but we were not yet finished.  It was time to go home and tell the kids.

Spatula, Spatula, Spat-u-la

We had been putting off sharing my health news with our three children until we had more concrete information about what I might be facing in the weeks or months ahead.  I dreaded the notion of a somber family meeting during which we would gently lay out the facts and possibilities while our offspring burst into tears.  And yet, as usual, events sometimes don’t unfold as you foresee, as evidenced by our borderline-futile attempt to have a serious conversation with an energetic 4 year old, an intelligent but self-protecting 10 year old, and an emotionally mature, sensitive 13 year old.

Since Earl works out of his office at home and I take care of the kids full-time, the absence of both of us on a weekday afternoon seemed fishy to our 13 year old.  Furthermore, just days earlier, he had managed to hop onto my computer before I had a chance to erase my browser history and close windows showing breast cancer information; I hoped he hadn’t paid attention but unfortunately he did.  By the time we returned from our appointment with my doctors, he was highly suspicious, peppering my mother with “Why aren’t they here yet?” “Where did they go?” and “Is Mommy ok?”

We tried to call all 3 children over to the couch, but in typical fashion unless there’s dessert or a movie involved, resistance reigns.  The 13 year old didn’t want to come downstairs, likely because he’d already pieced it all together and was forestalling the inevitable.  The 10 year old was busily engaged on the computer and couldn’t be bothered to move.  The 4 year old either needed to go to the bathroom or had consumed great quantities of sugar (or both) so was simply uncontainable.

Finally, we managed to herd all three to the same general geographic area and started a conversation that went something like this.

Earl:  “Mommy and I have something to tell you.”

Child 1:  “Is she ok?”

Child 2: (To Child 3) “Get off me!”

Child 3: “Spatula, spatula, spat-u-la!” (Sung à la Rita Moreno in West Side Story’s “I Want to Live in America.”)

Child 1: (To Child 3) “Be quiet!”

Child 3: (Louder now) “Spatula, spatula, spat-u-la!”

Earl: “Mommy has just had a test, we’ve spoken with her doctors, and she has something called breast cancer.”

Child 1: “What?  I can’t hear you!”

Child 2: (To Child 3) “Get off me!”  “Daddy, he won’t get off me!”

Child 3: (Still louder) “Spatula, spatula, spat-u-la!”

By some miracle, after a few minutes, the older two understood the substance of our message.  At this point, the 10 year old declared that she’d had enough bad news and went back to her computer.  The 4 year old continued his serenade, oblivious to my health status.  And the 13 year old gripped my hand tightly while hearing more about my immediate future.

It’s probably appropriate at this point to mention that the older two have already lived through a loved one’s cancer diagnosis and treatment as my mother’s ovarian cancer was accidentally discovered almost 5 years ago.  They already understood the general nature of cancer as cell growth gone crazy.  And yet it hit even closer to home this time.  We continue to be vigilant, watching for any changes in them at home or at school, and we have enlisted the aid of friends and teachers to also be on the lookout.

May 5th: When Life Gives You Lemons

Breast cancer gave me license to do what every woman attentive to her appearance has secretly or perhaps unconsciously wanted to do her entire adult life:  visit a plastic surgeon.

If I was going to have a mastectomy, my next decision would be whether I’d want reconstruction, and if so, whether I would want the reconstruction right away or at a later date.  “Immediate reconstruction” meant that, while I would be in surgery an additional 6-8 hours past the 2 hours needed for the mastectomy itself and would have to stay in the hospital for a few extra days, it would hopefully obviate the need for further major surgery and give me a better cosmetic result.  As I hinted at earlier, yes, I am vain (as well as impatient), so guess which option I chose?

Serendipitously, an appointment with a plastic surgeon opened up the very next morning.  I went to the appointment alone, believing the plastic surgery would be a positive experience: a constructive process, something to look forward to, a way to salvage my formerly unsullied body, and a step towards moving beyond cancer.

To my slight disappointment, there were no flashy face-lift or breast enhancement brochures in Dr. Orman’s examination room, no before and after portfolios of the rich and famous to leaf through as I waited.  He asked several brief questions:  my favorite activities, whether I exercise, smoke, what I don’t want to give up doing after surgery.  Next came a short physical examination including a fairly humiliating interlude when he grabbed my abdominal area with both his hands serving as giant calipers.

Oddly, the good news was that I have enough fat in my lower abdomen (Normally this wouldn’t be good news, but it’s funny how life can change on a dime, right?)  to actually create a pseudo breast. Yes, you read that correctly.  After the tissue from my real breast has been removed by my surgical oncologist, Dr. Orman and another plastic surgeon will swoop in and relocate fat, blood vessels, and a small bit of abdominal muscle to the area recently vacated by my breast, then reconnect blood vessels, etc., and voilà, a new breast.  If you haven’t yet figured out how I’m making lemonade from the recent batch of lemons I’ve been given, it’s that as a (Sorry, I can’t help myself here.) booby prize for having to go through the misery of a mastectomy and who knows what else after surgery, I’m actually getting a tummy tuck!

May 7th: Ka-Pow!

My dear friend and running buddy Truc has put up with a great deal from me over the past few years.  Not only has she allowed me to con her into running in the frosty pre-dawn hours of many a miserable winter morning, but she has also graciously allowed me to drag her to running races when she obviously had better and more comfortable things to do.

Case in point:  Every Mother’s Day weekend, the Stanford Native American community holds a pow-wow in a eucalyptus grove on the north side of campus, including a low-key 5K (3.1 miles) fun run/walk as part of the festivities.  It had been a few months since the last time I managed to coerce Truc into entering a race with me (at the Kaiser Permanente Half-Marathon in SF back in February), and I wanted to do one more before entering cancer treatment.  She could have enjoyed the morning while boogie boarding with her family at one of our beautiful Northern California beaches, but instead she magnanimously opted to come and run with me.

After biking from our homes to the starting area on a surprisingly nippy May morning, we milled amongst a crowd of contestants numbering no more than 50 children and adults, runners and walkers, Native Americans, Asians, Caucasians, students, retirees.  The casual, intimate gathering presented a stark contrast to our last race, a full-blown affair with corporate sponsors, thousands of runners, and mazes of traffic.  The morning’s course ran 3 times around the pow-wow grounds, passing by the attendee camping area and up Palm Drive and swinging back around the circular cluster of teepees, food vendors, and jewelry hawkers.

While running, I concentrated on my form and marveled at the beauty of the trees.  I thrilled to the customary feeling of well-being that rushed through me as I kicked up the pace with each mile.  As I turned into the final stretch, I realized that I want to experience this exhilaration again and for a long time to come.  I would fight cancer.  I would work hard as I have for everything else of importance in my life.  I would outrun cancer, outlast it, defeat it.

I managed a personal record that morning. Clocking in at 26:28, I beat my previous best 5K by almost a minute and also ended up running faster than all the other women in my age group (admittedly, there were probably just 5 of us).  More importantly though, for the first time in a few days, I felt a resurgence of optimism, control, and dedication.  I can do this.

May 10th: Next Time, Better Ear Plugs

The ambiguity of my current diagnosis (invasive/noninvasive?) called for more scanning to help determine whether my mammograms might have missed cancer in the other breast, so I was next dispatched to an MRI lab in San Jose.

Compared to my biopsy experience, the MRI was like a (very loud) spa.  Dressed in a tastefully striped hospital gown with an acceptable thread-count, I casually lounged on my stomach on a well-padded table, my arms comfortably stretched above my head, which was in turn gently cradled by a cushioned support.   My dutiful attendants (a.k.a. MRI techs) draped warm blankets over my back and legs to keep me warm and I was then eased into my own private meditation room, that is, MRI chamber.

Oh, wait, did I forget to mention the IV in my arm?  Ok, so it wasn’t really spa-like, but it wasn’t bad.  It was so warm and cozy, in fact, that I fell asleep multiple times during the 45 minute procedure, panicking as I drifted back out of slumber that I could not move or risk fouling the images.  Also, if you’ve ever had an MRI, you already know what a cacophonous experience it is.  I was given standard grade ear plugs before heading into the chamber and those did little to dampen the creaking, banging, and thumping.

Afterwards, I went to a nearby mall and treated myself to a little retail therapy plus a super-sugary smoothie to help flush the Gadolinium (used to improve MRI contrast) out of my system.  All in all, Spa + Shopping + Sweet Treat = A Pleasant Morning.

It Takes a Village

I’d like to take a brief intermission from my rambling soliloquies to properly acknowledge my supporting cast:  my friends and family.

Thank you all for your kind words of support.  Your emails and phone calls have heartened me in periods of sadness.  They have reassured me when I waver.  Your stories of friends, aunts, sisters, and mothers who have all fought and survived are inspiring.  When you hear the statistic that 1 in 8 women will be diagnosed with breast cancer in her lifetime, you realize that it can (and, unfortunately, in all likelihood, will) hit pretty close to home.

Thank you to my friend Eva who very kindly conferred, organized, and set up the Lotsa HelpingHands site.  When I first logged onto the site and saw the list of generous souls who are offering their time and resources to help us, I lost my composure, something I have managed to avoid for the most part thus far.  Yes, you made me cry, people!

Thank you to my dear family.  Thanks for letting me slide on the housework, cooking, and general responsibilities.  Sadly, things aren’t too different now that I’m slacking, are they :)?

And thank you to my perfect husband who loves me unreservedly regardless of how imperfect I am and how even more imperfect I will soon be.  We’re now coming up on 25 years of couplehood!