Before I write real time, I’d like to create a base of the emails from 2010 and my speech at the Gilda’s Club 2011 gala. At 36 with a 2 and 5 year old it was such a different experience. I was so angry, so fiery, and I find my voice has changed. Thanks for indulging the rewind, and for those who don’t me I hope it will prove useful to those going through their own battles.
June 1, 2010: A Beating and some +
I got in trouble with my chemo nurse for trying to tough it out this weekend. I didn’t think that a 70min walk, 18 holes of golf (I broke 100) and a little too much heat + a total failure to use the nausea drugs would cause a problem…..oops! I don’t recommend nausea. It’s like drinking one million low quality beers, pabst blue ribbon say, and then not being able to boot. Oh, but if you’re really silly and don’t start immediately taking the anti-nausea drugs then you sweep into a downward spiral ending in a total bootfest. Yuck. It was a long, painful 36 hrs. A beating I’d prefer not to repeat. The good news is that shouldn’t happen again, and I will embrace the wonderful world of meds for now.
On a very happy note, the left tumor shrunk dramatically again! It is now 1.5cm down from 3.3cm. Something is working! And well ahead of schedule. They were “astounded” and “thrilled”. Ooh I love to astound.
On a less fun note the genetic testing confirmed that I’m BRCA2 positive. Having this mutation means that I carried a 50-85pct lifetime risk of breast cancer and carry a 30pct of ovarian. Fun. This means that come november/december surgery will be a now be a double mastectomy (long term perky b++bs are the one upside here!) And byebye ovaries. Oh well. Frankly, it feels better to know, to have a pro-active plan, and it will be manageable. Most importantly, it should mean no more cancer long term and I won’t have the stress of perpetual screenings. It will all be one efficient surgery.
The food deliveries have been fabulous, and thank you all for the wonderful emails. They keep me charged up and very focused on a great outcome.
The zofran is working it’s anti-nausea magic, and they’re about to start the chemo drip. At the end of today it will be 3 down, 13 to go. Progress!
P.s. Many people have asked, “why chemo first and then surgery”. This is dr esserman and dr rugo challenging convention. You get to see how your cancer responds to treament. If you cut it out first, there’s nothing to monitor. Given my speedy and dramatic response to treatment, I’m so pleased I’m going in this order. www.ispy2.com or .org gives more color, but I will certainly be a good example in the trial.
Excuse the long-winded update. Just a lot of big news this week. Maybe next week will be “boring”
June 10th, 2010: 25% Done
Not my best week, but a superb ending. The good: my tumor has now shrunk more than 50pct in 3 cycles. They are extremely excited. If the cancer vanishes by the time of surgery, then no radiation needed. The bad: yucky week of nausea and all the joy that brings. The ugly: nope, not going there. The hardest thing to get used to is still just not being able to go 100pct and power thru everything. Working on my patience….ha!
All that said, after some painful learning experiences I think I’m finally figuring out how to better manage the side effects, or so we shall see! We will be seeing Dr Esserman tomorrow and will learn more about the mri results (they were great!) And also more about the eventual surgery.
The hair is starting to go. I’m considering making a chia-pet for our dog Thea from the strands…..classy I think.
I finished “61 hrs” and “Innocent” this week. Nice fast reads.
June 14th: Channeling GI Jane
I am officially bald. Whipped the clippers and razor out on Friday night and just took it all off. Whew! Remarkably liberating actually. More on this shortly:
I just got in trouble w Dr Rugo for losing too much weight, so I am thinking bring on the guac and ice cream. They said I have a license to eat anything I like to avoid losing any more. Hmmmm! I still have to focus on nutrition and frankly trying to have an appetite, but a license for guac and ic seems fun.
The tumor continues to shrink, and the lymphnodes are soft and smaller. Dr Rugo was “thrilled” again. They’re still not sure whether it’s the chemo or neratanib, but either way it is a home run and I’m a “poster child” for the trial. Nice!
They told me I still need to get better at slowing down (ha!)but are otherwise happy with me.
I’m working my way through “The Quants” and then need a light read.
Our new nanny started yesterday: a fresh start, and she is just fabulous.
I’m starting my 6th round of Taxol today (1/2 way thru taxol!) Also getting used to the bald thang. It is often empowering and yet just as often makes me feel very vulnerable.
All in all, great progress and can’t complain. Here comes the benadryl! Have a wonderful week!
Well the guac and icecream did their job (yes, people took my title literally!!) I’m back at a healthy weight and made the nurse’s day. That and, oh yes, the tumor shrunk again. Can barely feel it now! Now I might need to slow down on the guac/ic feed fest!
I just finished cycle 7 of the Taxol. Yay!!! 5 more to go, and then I’m also done with the miracle (but not so miracle side effect yuck) trial drug neratanib. Feels good to be knocking off these sessions! Feels remarkable to have it working.
Given that the treatment has a cumulative effect, I have been a bit more tired and have had to fight the nausea. I’m still not a great napper, but am trying to listen to my body. Patience….the virtue I wasn’t given and am permanently striving for.
This week also blew my mind as I received a gift greater than I could ever have imagined: my wonderful boss at GS spearheaded an incredible effort with Tipping Point (www.tippoint.org) and raised $300k in my name for a room at the new and phenomenally needed Integrated Center for Children and Youth created by Tipping Point. I was truly speechless (I know, I know…..hard to imagine) when they surprised me with this beautiful honor at work. The center is the first of it’s kind in bayview/hunter’s point and brings a desperately needed center for truly integrated healthcare to families and children who most need it. I have not seen the list of amazing donors, but I hear I will be very busy writing thank you notes! I’m shocked, thrilled, honored, and deeply humbled. It is a huge inspiration to kick the cancer and to come back in fighting form. Wow!
37 is a good year!
Our new nanny is just genius, filled with energy, creativity, and ideas. The kids adore her and she is making life easier for the whole family.
At yoga last week the teacher told me, “Cancer is an agent of change. It comes in and shakes up your life and helps you see the world differently, forge new paths.” I thought that was a brilliant way to look at it and will certainly embrace that thought over the coming months.
Love to all. My words never adequately convey the huge appreciation I have for all of your stunning and warm outreach, support, and generosity. Thank you.
Hope everyone had a wonderful 4th! I was up in Sun Valley at my parent’s which was pure bliss. Sunny blue sky days and that invigorating mountain air that makes you feel so very alive. I tried something new up there which was accepting my 1/2 strength for the time being rather than being frustrated by it. Good advice from a friend. It made for better hikes and bike rides, and an all around fabulous visit. I’d usually fire through 3 physical activities in a day in sun valley, but that’s sadly just not do-able right now. So I just did 1 happily and at whatever pace I could manage each day. Such gorgeous country; certainly superb therapy!
The effect of chemo is cumulative, and I get tired more easily now. I’m still a terrible napper, but getting better at resting!
The good news is that I was a true master of the hammock by the creek. Knocked off a few fun novels, took in the beautiful views, and was spoiled by my mom’s amazing meals.
Today is round #8!!! In terms of # of treatments that puts me exactly 1/2 way through!! The chemo nurse said both the lymphnode and breast tumors shrunk again and places them at “watermelon seed” and “pumpkin seed” size respectively, a far cry from the 6cm+ from april. Nice! And certainly worth any annoyances from the treatment.
So there is this fabulous if slightly dorky Crystal Gayle song “I’ll do it all over again” from the 70s which I’ve loved since age 5 when I would play the big old record on repeat until I knew every word. It’s a great tune and it just tells you to get back up and do it all over again. Love it. At session #9 that’s about how I’m feeling. Of course at age 5 I also wanted her waist length hair and groovy peasant dress…! In time.
I’m in a good mood today after a bit of a volatile week. I was so revved up after hitting the halfway mark, and then I got tired of being tired, I got way over being bald and feeling vulnerable because sometimes it just blows, and I got tired of that blecchy hungover feeling that just sticks with you and drops in heavily uninvited. Now I’m back to me again.
Today my chemo nurse said everything was looking good. Tumor held steady but that is down 90pct from original size and she remains thrilled with my progress! All good.
Some of the things that simply don’t bother me anymore: age (something to celebrate), wrinkles, scars. Things I can’t control bother me less, but I won’t lie and say cancer has cured me of that completely!
A weekend in Tahoe at my friend Ria’s house was a great change of pace and full of hiking, lake time, guacamole, and rest. I finished “happy all the time” and “the sweetness in the bottom of the pie” both light, easy, summer reads that hit the spot.
#9 will be done, and then I’ll do it all over again!
Thanks for the incredible and consistent support. Best medicine.
10 has such a good ring to it! It feels rather victorious to have knocked off 10 full rounds of chemo and to still be standing (and a lot more!)
Timewise I’m basically at the half way mark, but in terms of actual infusions I have just 6 more after today between now and october. That feels good. Surgery is no picnic, but after the chemo I’ll probably just welcome it with open arms (and some nice new bras!)
Chemo nurse said my vitals look fantastic, although I got in trouble for dropping weight again. I will eat like a horse this week so I don’t get scolded by Rugo on the 27th (you don’t want to be on her bad side!) Tumor has stalled at sunflower seed sized but is not growing. I remain ahead of the curve. Will get a real sense of the progress in the mri on aug 12th.
I’ve had my best days lately by acknowledging my current limitations and just sticking to a few activities+respcting naps. Sunday I hiked with Bebe in the pack. I was slow, but we went straight up Coyote Ridge over at Tennessee valley-invigorating- and then she sang (age 2) from Sound of Music the whole way down. I’m glad I can still keep up that kind of thing even if it’s at a tempered pace. I hit the driving range too. Can I play the cancer card for my errant shots….? I think not, but golf is going back into the therapy rotation. It feels great to whack the ball and is very therapeutic. Hatha yoga is still so so good, and I’ve been doing that 2x/week or so.
I finished Quants and am speed reading the Agassi biography. My songs for the week? A weird jump back to the 80s with a Talking Heads cd that was hiding in the car. I like And She Was, Road to Nowhere, and then these lines “I can see my lifetime piling up. I can see it crashing into yours. It was no accident at all. Open your windows up!”. It made me think that the cancer was no accident and things like this just happen for a reason so you open the windows up, welcome them in, and make the most of it. Great tune too! That JJ Cale tune I referenced awhile back is actually called “Everything will be alright”. That’s my go to.
Have a great week, and thank you for all the awesome messages, food, and nurturing. #10 starting right now….
Lots of you have asked for a look at the bald look. Not one I’d choose to repeat, but voila in attachment at end!
I have to admit the soupy, brooding San Francisco fog has finally gotten me down this week. An unusual low for me.
But I got a lift from the chemo nurse today as she said the tumor is a mere sesame seed now and tough to find. Yay!! Success.
Today will be the 12th of my 12 taxol infusions! Hard to believe this has been my life for 3 mths. It feels like a year since I found that lump. But how lucky I’ve been that the taxol and neratanib have done their job and I’m still standing! Now I have a 2wk break before “the bomb” A/C chemo as they affectionately refer to it. That means fly fishing, riding, hiking, the hammock, and family time in Sun Valley followed by a big MRI on the 12th. I’ll have the drugs flowing through me for 1/2 of that but then get a brief respite. Then I will just see if I can show the A/C a thing or two about resilience?
I will admit that I’m a little scared about the surgery. But whatever. It has to be done. I’ll know more about timing and process after an esserman meeting on the 18th.
Thanks for the incredible patient uplifting support. Chapter 1……is done!
Today is my first round of adriamycin/cytoxin (A/C or “the bomb”). 2mths. 4 rounds. Boom! The MRI was outstanding and showed that the tumors had shrunk from 6cm to 2.5cm and from 2.1 to .8cm. Doctor thrilled. The A/C should knock out the rest, and it may just be scar tissue at this point. The heart test showed some trace fluid around my heart caused by the neratanib. Will check back on that in 5 wks and hopefully it returns to normal. They said not to worry, that I’m ahead of the curve, that I have more energy than a non-chemo person and the blood test was “fabulous”. Ha!
Everything finally caught up to me this week though, and I’ve been a little blue. Oh well.
The week off in Sun Valley was fantastic. I fly fished (caught a beautiful brown and some rainbows), did 2 wonderful horseback rides, hiked, got a road bike (gorgeous rides there, have to work on coordination–oops!– in SF), ate well, and just enjoyed being outside all day and with family. The kids were in heaven.
The nausea is supposed to be worse with the a/c. The chemo nurse said “live your life like a series of Mad Men….lots of breaks”. She probably didn’t mean lots of martini breaks! They bring in the “big guns” anti-nausea medicine via IV today so I’m hoping that helps too.
Cancer shakes everything up, but I don’t know what my lessons are supposed to be. I already loved my family+friends, lived big, appreciated my job, the beauty of a good chat and a normal day, and threw myself at life. I feel like there’s supposed to be some great epiphany, but I’m not there yet. Perhaps a bunch of nausea will set me straight!
I will meet with the surgeon, Dr Esserman, tomorrow.
I hope this finds everyone well and enjoying the last weeks of summer. Thank you for the ongoing support. Treatment has started now so… I’m getting there!
So I should be totally ecstatic after my meeting with surgeon dr esserman and reconstructive surgeon dr foster, but I think the battering of a/c plus the sobering timeline got me down. The good news: esserman cheered when she walked in, said the mri looked phenomenal, there is virtually no cancer there, and I’m her poster child. Also huge + news is that I will keep ALL my skin, ie it is only the internal tissue that is coming out which is awesome from a feeling/looking like a normal person perspective.
Surgery will be Nov 2nd. What I hadn’t realized was the length of the follow up and a 2nd surgery+recovery. This all puts me back at work Feb 1st. So nov 2nd, then 2wks recovery, then the expanders get filled 1x/week for 6 wks, then final surgery, then another month recovery. It’s just a serious marathon. I guess I need to reset my expectations and stop feeling so trapped by the cancer. I’m tired of being sick and 1/2 energy. It is remarkably frustrating and I want my life back. It’s weird having “time off” but not being able to go on a cool trip.
Don’t worry, I’ll get my positive view back in no time. And as I said it’s not that often that a surgeon walks into the room and cheers so I need to take a lot of joy from that.
Apologies when some of this gets repeated in 2wks when I send my broad update, but just wanted to let you know how the day had gone.
The chemo bomb was aptly named. Sheer determination and will power proved irrelevant and ineffective against it, which as you can imagine made me really happy… It was essentially 5 days from hell, 2 ok, and I’m now feeling fairly human. Tired, but more human and off the mental lows. This chemo attacks the dna, and so I’d try to describe it as delivering cellular pain, an overwhelming feeling of gross and tired that’s deep in your cells and bones. My legs felt like jello and everything and nothing were an effort. There’s just no way to sugar coat it; it was like nothing I’ve ever experienced-if my firm still allowed foul words I’d have a lot more to say! 3 more of these infusions thru sept 28th or 15-18 horrific days out of a long, great life: do-able. Hard to believe I get hit again Tuesday, but now I know what to expect.
The Dr esserman/dr foster meeting was fantastic. The tumor is now tiny (golf ball to sesame seed). She is thrilled and says I’m her poster child for the trial. First surgery is set for nov 2nd; second surgery likely at year end; long slog, but I get to keep all my skin and they are very confident that I will be totally cancer free.
Bebe sings “doe a deer” from sound of music and Will sings the marine corps hymn- they keep me laughing. Bebe still likes to touch my head. I’m still atrocious at “accepting not expecting” but maybe someday I’ll get there.
Are you sick of me yet? I think I’m sick of myself at this chemo laden point! What a concept to voluntarily poison yourself. My dad calls it rattlesnake poison. The chemo week itself is just ugly: draining, useless, blecccch…and then this 2nd week the fog lifts and you’re just tired but ultimately feel at least chemo normal. Oh, except for some searing bone pain on day 10 when the bone marrow regenerates! Wow! But…….
I’m 50pct done now!!!! Only 2 more of these cycles, so eyes on the prize! I will not miss the infusion room; it is always a sobering reminder that many patients are in much worse straits and not so lucky as I have been with their results. I love the nurses and doctors, but the rest is really depressing. I still go in with a “let the healing begin” view accompanied by dear friends and family, but it will be a thrilling day when I walk out those doors for the last time.
My reading list has admittedly eroded to brain candy (2nd assistant, beautiful people, lunch in paris) offset slightly by bouts of gs research, crosswords, wsj, and good spy novels (silva). Will learned to ride his bike w no training wheels, started pre-k, and went to his first Giants game; Dad walked Carmel beach for the first time since his stroke 15mths ago! Some good victories.
I hope I say Thank You enough. I have continued to be astounded and humbled by the steady stream of support, amazing food, kind words, and unwavering belief that I’ll beat this. It is by far the best medicine!!! And I know it is working. Thank you!!
P.s. For a hearty laugh the old movie “The Russians are Coming” is too good for words.
As I prepare to wade back into the chemo fog, I’m reminded that at least a complicated life is rich, that trying to explain life’s tragedies is fruitless, and that coping with them keeps life interesting. Dr Esserman asked me to be interviewed by the WSJ, and so last week I spent 5hrs with reporter Ron Winslow to discuss my doctors, the trial, and cancer. The article centers on esserman’s ispy2 trial/life on a trial, and hopefully you are not laughing too hard at me when it prints in a few weeks with me as its personal narrative (light heckling permitted:). I have loved Esserman’s approach of turning classic treatment on its head with chemo first and her goal of personalizing cancer treatment vs a cookie cutter approach.
My chemo nurse thinks the A/C has shrunk the lymphnodes! Yay! And my heart test shows a recovery to my normal level. Good. Dr Rugo was thrilled w my health and unusually upbeat today, always a good feeling.
Today is #3 and sept 28th will be the final round of chemo!!!! They say this week is the worst. I know now not to fight it, but to let it sink in and to work through the beating with my oh so honed patience.
Clapton’s Backless album is on repeat for me right now- it rocks. I can’t recommend eat, pray, love–too long by far; perhaps the editor got lost in bali. I haven’t been able to do my yoga, but have enjoyed some low key road biking and walks.
Thanks everyone for the love and kind words. I realize I’m not always the most patient of patients. Ha!
It is a sunny, blue sky day in SF, and today is my 16th and final round of chemo! Hooray!!! 7 days of hell ahead, and then onto the job of slowly rebuilding my health before the first surgery on Nov 2nd. The a/c chemo is a chapter I am thrilled to leave behind; a roller coaster 8wks of physical and emotional fragility. Not my finest hour. Onward and upward from here I hope.
This last appt was kind of a let down. I know, I’m just supposed to be grateful it’s the last one, but none of my usual nurses are here; there’s no new news; and the one thing the nurse said was “be patient with yourself; it will take 6mths to feel normal”. Ugh!
I have to remember that after 16 rounds of magic poison it is going to take awhile to bounce back, no matter how fierce my determination. Churchill apparently said,”When you are going through hell, keep going!” The WSJ article should run this weekend. It will give Esserman and the trial solid publicity. Again, heckling permitted.
I will have a final MRI on Oct 26th and get the reading from Esserman on Oct 29th. I will find out if I’m truly cancer free during the surgery. With the incredible shrinkage of the tumors and nodes I have high hopes.
Thanks everyone for your incredible kindness and patience through this process and during the recovery ahead. I admit I want everything to be better RIGHT NOW (as Bebe would so eloquently say) but I’m realizing recovery will be yet another humbling lesson in patience. When will I acquire that? In time, perhaps.
It is Tuesday…..but for the first time in 5mths I have no chemo! Hooray! I thought it would be dull to just get better though so threw in a nasty cold and lost my voice. The last 2 wks were tough. I went into that last chemo hoping for some breakthrough moment, sort of forgetting that I’d have to slog though the lows of that last dose first. You know how you feel when you’re deep into the flu and you think you’ll just never get better? That’s how I felt until today. I really rolled around in it. The counselor at UCSF told me I needed to “make friends w passivity” during the recovery. Yes. Absorb that for a minute. Me and passivity- bonding. It went really well….ha! I think there is also an element of the ritual ending. When you’re in chemo you’re exercising a proactive power to bash the tumor each week. There are milestones to measure. This period is more of an odd limbo. You don’t have your physical power back; you’re not on your game; the bald look has gotten old; and there’s still a great deal of unknown and uncertainty to make peace with. Cancer finds your weaknesses.
So enough now of the “woe is me” and onto rebuilding strength. I’m scared for surgery, frankly, but it will be good to get all the potentially bad things out and remove any opportunity for cancer to return. It will be worth it.
I’m following the sage advice of several friends and will incorporate yoga, acupuncture, and massage into this phase to try to jumpstart my battered immune system. Also reading Girl w the dragon tattoo (thanks daniel!)which is flying by. I found in a cancer notebook,”I am not afraid of storms for I am learning how to sail my ship.” I shall keep navigating.
Love to all.
Warning to readers: avoid reading part 2 during meal time. Surgery is neither glamorous nor appetizing…First I’ll just fill you in on how I am. Then I’ll answer questions I’ve gotten on the surgery.
I had my last MRI today. Brutal. Feeling very fragile. I’m actually not asking for sympathy; it’s just where I am. I went from feeling like a warrior princess taking this on fearlessly to feeling a bit battered all around. Such is the process. Cancer shakes you up. Lots of questioning, uncertainty, loss of hair, eyebrows, eyelashes, some dignity, and perhaps too much time to think! I’m better when I’m working! After being sick for 4wks (annoying!) my cold is abating and the chemo fog is certainly lifting. Yay! I am still easily exhausted and in no way myself. But no question energy is slowly returning! Patience, right! :). NBC local interviewed me re the trial. Will see when that airs.
Surgery is Nov 2nd. I’m both excited and v scared. I report to the hospital at 6am. Surgery begins at 7:30am with Esserman removing all of the tissue and as many lymphnodes as deemed necessary, Foster inserting expanders under skin and muscle, and Hsiao removing ovaries. Funtimes. It will be about 7 hrs. That may be the most sleep I’ve gotten in 2010! Ha! It is an amazing team at UCSF, and I’m in great hands.
1 night in hospital and then I’m packed home with pillows and painkillers. Ouch! One lovely aspect of this is that for 7-10 days I will have drains hanging off of me–what a pretty picture! They look like clear hand grenades. Bam! Once those come off then I turn into a blow up barbie doll as the expanders get filled w saline each week. When they reach a choice volume then there’s a 2nd surgery and the expanders are replaced by silicone implants (end of december). Eh voila! New assets. No more home for the cancer. The pathology report will come 10 days post surgery. High hopes on that.
For Halloween, will and creighton have star wars covered w darth vader and han solo. Bebe and I are going the superhero route as batman (I didn’t see any point in arguing with a stubborn 2 year old girl) and Wonder Woman. Bebe informed me that “superheroes don’t fly; only airplanes”. Who knew? Maybe I should bring my cape and crown to the hospital!
My hair should start growing next week. I just got some of my right eyelashes back. I will look ridiculous for awhile, but I’ll be grateful to hit this next phase.
I know I am very lucky to have responded so well to the chemo; I know I’m lucky in general. It’s just been a wild ride. Life is sure complicated but interesting. KL
The wonderful news is that the surgeons said everything looked clear! Will get final confirm of the pathology around nov 12th, but it seems promising. Hooray!
Surgery wiped me out. 8 hours; 3 surgeons. The anesthesia really crushed me, and I didn’t come out of it until late Tuesday. I was breathing so slowly that they wouldn’t give me painkillers or let me sleep so it was a rough start. I finally slept wednesday andcame home on Thursday—for once am truly doing nothing. The bandages+drains are awkward particularly w young kids. The pain is significant but helped by vicodin and ibuprof. I feel like I’ve partied at Burning Man and climbed Mt Whitney in a day without either of the fun benefits! Ha! I’m also not very coherent so I’ll avoid further tarnishing my writing reputation! Bottom line: it went really well, I’m dead tired, and with patience each day will get better. More later. KL
Ok: surgery went well and I’m healing well. Radiation is still a possibility. 😦 Clearly the latter was disappointing to me.
Chemo took the tumor from 7cm to 0.8cm. This means my body is cancer free 🙂 given they removed all the tissue, BUT they did find “minimal residual disease” of scattered cells in the .8cm tumor during the surgery. And there was a tiny fraction of cancer in one lymphnode. I will go onto hormone therapy. They have NOT excluded radiation yet. Uggggh. we have to wait until esserman+rugo+radiation oncologist compare notes to decide. Esserman said that people who have this response typically do not see any recurrance. We will get oncologist Rugo’s take on the 18th, but may still be in limbo for a few weeks…so uncool.
I am healing well and they say my skin looks great. And….they don’t look half bad!!
So….all in I’m a little off balance and not exactly in celebration mode yet.
April 8th I was flying high. Life was just good. I was energized in general, challenged, motivated at work, loving where I was in life. April 9th I found the lump, and it’s hard to believe what a wild ride it’s been since then! How lucky I have been to have such phenomenal support from friends and family, access to UCSF and gifted doctors; the unwavering belief from both that I could beat cancer; what a gift!
I feel run over by the process–it catches up to you–, but I do have conviction that I will come back stronger when all is said and done. Watch out! 🙂
Surgery really hurt. I mean how fun can it be to have your whole front removed! Ouch! Pain is easing, drains are off, bandages are smaller. Getting back into walks.
Next week: the 4-5 weekly “fill ups” before the implant surgery. Blow up barbie! I will work on getting my range of motion and strength back for now. Still so tired. Thanks for putting up with my whining on the rough days. These last 3mths have tested my resilience more than I thought possible. And the marathon is still on.
I’m going for a lovely new look as the eyebrows, hair, and lashes forge their way back. Can’t fight it; just have to endure it– can we call it post battle awkward chic? I’m sure that’s hot somewhere.
Rugo, my oncologist, walked into the room and announced “Great results! I agree w Esserman that you will not need radiation. You should respond well to the tamoxifin” However, the rest of the meeting reminded me that cancer is all about shades of grey. You never get to zero probability of recurrence; you constantly weigh risks vs benefits, BUT it’s clear that they are trying to challenge “standard care” and not overtreat a patient when there may not be clear benefits. I still have to meet w the radiation oncologist to be fully informed, but feel comfortable proceeding sans radiation. Yay!!!!!!So what does this all mean?
I had 3 nodes removed. DCIS and trace cancer remained in 1 node and the tumor. They do not think removing more nodes is advantageous. Radiation doesn’t improve my survivability/mortality rate. My cancer responded incredibly well to chemo, and they think hormone therapy will also go well and is key to avoiding a recurrence (local and systemic). So is exercise. Estrogen is the fuel for my cancer so this therapy will supress that. Fun. Go Tamoxifin. 2 yrs of that and then aromotase inhibitors for 3-7yrs.
I had my first “fill up” this week. It was hilarious and I laughed through most of that meeting. The nurse rocks and yes, they literally inflate before your eyes. Comedy.
Still in pain and tired 2 wks post surgery(frankly probably will be until next surgery) but walking 4miles/day which helps my sanity!
From here probably 2 more fill ups, rest, end of december surgery, and per Rugo a 2mth recovery. That should put me back at work Mar 1st. As you might imagine, it’s difficult for me to accept that it’s not an immediate leap back to 100pct. Chemo and toughest surgery are done (hallelujah!), yet it’s still a long slog to get back to being me. Rugo said I’m doing so well, but to remember that it will simply take time to heal, to adjust to the drugs, to get rid of the chemo. I know…patience.
The wonderful thing about UCSF is that they are constantly learning from trials and studies, and they will adjust my therapy if they see a better route. It is a fluid process. I will go in every 6mths from here out .
It struck me that while I will absolutely go forth with the belief that I will never have cancer again, as a cancer patient you always live with cancer. That stinks!! But, I will not let it define me. And I will get strong again.
Hair, eyebrows, and lashes are growing back quickly. Again, vanity went out the window ages ago and I’m trying to just roll with this “regeneration” and find some humor in it. The nicest thing today was the nurse telling me that the WSJ article has inspired so many patients to go bald and encouraged them in many ways. Hooray for that. There has to be some good that comes from the battle, right?!
I’m so grateful for the incredible support network of friends and family that continue to lift my spirits and push me on. It has been a saving grace on my bad days. If I have complained too much at certain points, I apologize, as I know everyone has their own challenges and tragedies. But I have never wanted to pretend that it’s all smooth sailing. Cancer shakes things up, tests your patience, endurance, and resilience, beats you down to a pulp, and I suppose at the end you have to just rebuild yourself one day at a time, charge on, and let things evolve.
Sorry for the long update, but it was a big week of information and I’ve gotten a lot of questions.
Happy Thanksgiving and much love.
I went to Tipping Point’s annual presentation yday and left blown away by the grant recipients and their incredible stories about breaking the cycle of poverty. They offer sobering perspectives that remind me how lucky most of us are, and how finding a good support network ultimately saved them. My friend Susie has joked in some of my bleaker moments, “You can’t fall off the floor”, but I’m sure lucky I’ve had my network save me from trying to disprove that theory! Thank you! I’m 1mth out of surgery, and it’s hard to believe in that span I went from no lashes, no eyebrows, bald, and wrecked to everything starting to come back. Someone commented that with chemo they take you as close to death’s door as your body can handle. So true, but it’s incredible too how quickly the body fights back and rebuilds from that low point. I don’t miss that hell. I still tire easily but am getting my energy back. I tried yoga (w/o pec muscles!) today and think that again will help with this next stage of healing.
The fill ups have been comedy, although the pain is excruciating for the first few days as the skin and muscle stretch and nerves rebel. Nothing like saying “Fill ‘er up!”and getting resized on the spot with a giant syringe of saline. Insta-chest!! It always makes me laugh. So I’m healing well, but yes it still hurts.
I will see Dr Foster later this month for a last fill and pre-op. They set the final surgery date for Feb 10th! Later than I hoped, but a shorter recovery than this last giant surgery. As for radiation, I should clarify that I’m choosing not to do it. I’m going for the other side of the odds this time and hoping that there’s a 90pct chance of NO recurrence. I don’t seem to be having side effects from the Tamoxifen, so hopefully that stays the case. (5-10yr drug)
A woman at UCSF told me “there is no post treatment jubilation; that’s normal for all our patients.” That has probably been the toughest truth in the last few weeks. You’ve crossed the crazy hurdles of months of chemo and a massive surgery, and yet the finish line keeps moving. It’s like the false peaks on a hike on mt tallac or mt whitney! I feel grateful and lucky but am still processing the last few months of being in overdrive against the cancer, emotional and physical. Who knows what the future brings? You plan and work and strive, but ultimately some of it does just have to evolve.
Hope the month is off to a good start for everyone!
I’m honored to be here. Two years ago I found a lump. I was a working mom thriving in my job and life. Bebe was turning 2, Will was turning 5. So frankly my first reaction to my breast cancer diagnosis was that it was a giant inconvenience. I felt like my life had been hijacked. I moved quickly thru sad and why me? To extremely angry and motivated.
I was so lucky to work with the amazing Dr Laura Esserman and Dr Hope Rugo at UCSF on the innovative ispy2 trial. You do 5mths of chemo prior to surgery combined with the most appropriate trial drug for your tumor. You see how your tumor responds to the drugs before removing anything. It worked magic and while I slugged through chemo hell I was rewarded by the weekly shrinking of the tumor. I actually looked forward to chemo to see what would happen. I’d write my email update from the chemo chair, and the outpouring of responses fired me up for treatment. The nurses were my saviors; they endure every mood, win, and loss of their patient’s treatment.
I was also very lucky to be at GS working for an incredible boss. She saw how tight I was holding on as I fought to digest this turn of fate. She made me take cancer on like a work project with focus, determination, and a sense of humor. I came in just enough to stay connected but she made it clear my job was to beat cancer, and in the worst chemo months to let go. I walked everyday, practiced yoga, read a ton of books, nerded out on crosswords, rested, and tried to find some joy in every day. Nature has always been my sanctuary, and I used outdoor time as daily therapy. I still do.
No one wants to see their funeral before they die, but cancer and tragedy in general affords you that. I beat cancer because I had an army of strength around me in my incredible family, friends, and work. It was totally empowering. I felt I owed it to everyone to beat cancer My husband and kids lifted me up when thought I had broken. 2 yr old Bebe kept it real by stating the obvious. “Mommy….you have no hair” as she stroked my head. My friends brought me beautiful healthy meals for 6mths and each delivery from them was like a ray of light. I’d come downstairs grey and bald but utterly thrilled to get some time to connect. (The Humes- here today- have a chicken pot pie with magic healing powers) My girlfriends rallied around me like a clan of fierce mama bears and kept me laughing, talking and fighting even on the darkest days.
Cancer is a very personal experience. But one eternal truth is that you need a network around you. Gilda Radnor tapped into that as a crucial component of treatment. I was blessed to have an army, but Gilda’s Club offers that to everyone.
There were some benefits of cancer: not having to shave for 6mths. Eating loads of ice cream and guacamole while losing weight. Perky***. A pre-chemo shopping spree…just because. Welcoming the incredible generosity and kindness of friends and family.
I shaved my head right before my 37th birthday. I’d been doing a headstand in yoga and my hair came out in chunks. I walked to Walgreens, bought a razor, bought some nice sandals to take off the edge, and went GI Jane on my head. Ron Winslow of the WSJ wrote an excellent article on the ISpy trial and my experience. He surprised me by running a 1/2 page picture of my big bald head. Whoa! The nurses told me that patients started bringing that picture in with them and said they too would go bald. I am proud of that.I wore a wig to work for 1 morning. I decided in my boss’s office that the wig just felt wrong. Why hide? We laughed as I whipped it off and never wore it again. I was all about bald and Hermes scarves. The guys at work called me bad ** and cheered me on as I came in each week a little sicker and with fewer eyelashes and eyebrows. Having them see me at my lows meant that they were able to give me great perspective on how far I had come when I returned full time. What a difference a supportive workplace and leadership make!
One of my friends sent me a magnet that said “When you are going thru hell keep going” Chemo, a double mastectomy and ooferectomy were hell. But it felt damned good to come out the other side.
My boss told me that I never would get back to normal but that I would have to build a new normal. I’m still doing that. That too is where the support network is so vital. Ironically work was something that felt normal. I had found my groove in 2010, and thanks to my boss, team, and broad support around the firm and from clients I was able I jump back in where i left off when I returned in March 2011 It was a fantastic way to move beyond cancer. I was incredibly lucky to make MD in November. I had worked for that for 16 yrs.
Some humbling lessons of cancer are that you need to let go, that while juggling the necessary responsibilities of life you need to savor each day, and that your mind and body are remarkably powerful when coupled with the strength of a supportive network. I’m filled with gratitude for every doctor, nurse, and kind soul who invests their time and passion towards beating cancer. And I’m very grateful for everyone in this room who has supported me or who acts as part of the circle of strength for others.