I know everyone knows surgery was a success, but let me go back to the day of surgery and paint the picture for you of what it was like. Thursday morning I woke up at 3 AM, wrote my blog post, packed my bag, went to the hospital and was calm as can be. I was a totally a different person from the first surgery, there were no tears, and I can tell you I was sincerely calm and confident. We got to Kaiser, were the first patients called, went in and bonded with my pre-op nurse, and were just waiting. The anesthesiologist came by and asked me "Do you know who I am?" And I did!! He was the very kind dad of one of Natasha's very favorite preschool classmates and he could not have been nicer and more reassuring! We knew he was in the medical field but had no idea he worked at Kaiser or that he would be my anesthesiologist and he was incredible. He had read my entire blog (which the room mom had sent out to the parents) so he knew about my fears and doubts and my family situation, and told me point blank that the team was going to take good care of me, that they would care for me like I was a member of their own family. And I totally believed him which just furthered my calm and upbeat feelings about the procedure. The surgeon came by and then the plastic surgeon, and they found out about the blog and so everyone was taking down the name of the blog and starting to read it and I had to tell the plastic surgeon I compared him to Barney Stinson but in a really nice and funny way (he responded by saying he was going to have to start suiting up!) , and everyone was laughing and it was like a big celebration party. I fell asleep laughing, woke up and the surgery was done.
I woke up in post up to an incredibly kind nurse named Rhonda who was compassionate and kept me medicated and warm and got me a private room in the post partum ward of the hospital so that I could have some peace and quiet during recovery and not be required to share a room. Every single nurse and assistant who cared for me during my stay was remarkably kind and caring, wanted to hear my story, made sure I was comfortable, the surgeon came to see me and approved me for two nights no problem, the anesthesiologist/dad friend came by as did one of his colleagues. It was just incredible. I felt loved and cared for and like I did not have to worry about anything. I also had great pain management and so was up and walking that first day.
My recovery since coming home has been much the same. I have received every form of food love you can imagine, my mom and sister in law went out and got me new throw blankkets and a throw pillow to make my recovery chair like a paradise getaway, They also entertained and cared for the girls during my whole stay at the hospital and the girls, I swear, did not know I was gone, let alone missed me! I have received flowers and calls and messages of all sorts and today I got an actual singing telegram from a group of friends at work (here is the video
https://www.facebook.com/photo.php?v=10153774398790174&l=6548029138861694748). I am incredibly lucky and ridiculously humbled. The girls have been incredible, I got hugs and kisses from them both today, and Karina sat on my lap for a while without pulling or poking anything so I got at least come daughter love and it was magnificent. My sister and her family took the girls all over the City of Los Angeles today to the museums. and my parents brought over dinner from my aunt and my mom and sister and nephew are spending the time...I have been just enveloped in ridiculous amounts of love and care. And I could go on and on which I'm sure is sincere and perhaps slightly impacted by pain meds. :)
Which is why I was so pissed off when I read these two posts that people shared with me this week:
1. Apparently reimbursement for image guided breast biopsies are going to be reduced. This is how I was diagnosed and it the least painful and invasive method of diagnosis. Reduction in reimbursements would mean reduction in utilization. This can't happen. (http://www.breastcanceranswers.com/cms-reimbursement-reduction/#.UuXVgxDTmHs
2. Also, I have come to learn that the outstanding process and care I received at Kaiser is not state or federally mandated as standard care for the treatment of breast cancer and so in the state of California under many insurance plans, mastectomy is considered an outpatient procedure and reconstruction is hardly covered. I have a personal friend who did not have reconstructive options at the time that she battled breast cancer 8 years ago, but now there are new procedures and options that would make her feel whole again, but her insurance will not cover the procedure now. The mandated care for this disease needs to improve, and the content of this petition makes sense to me. Please read and at least consider. Everything mentioned would be considered best in class care and was offered to me as a Kaiser patient as the STANDARD for care. The fact that some people would not get these same options or benefits when faced with breast cancer is just unacceptable. http://www.change.org/petitions/ca-state-senate-and-assembly-amend-coverage-of-breast-cancer-surgery
I think that's it for today. I am still pretty groggy and so I didn't plan to post anything to the blog yet, but I thought the singing telegram and the two posted articles were compelling enough to risk posting something that sounds crazy under the influence of my pain meds. I am doing so much better than expected and feel really strong. I appreciate the continued support and will write more when the pain wears off more. I love you all.
Thanks for reading.
Sherri
Sunday, January 26, 2014
Thursday, January 23, 2014
Surgery was a success!
I got out of surgery around 2pm. Tumor is out! All went well. Groggy and resting...will write more later.
Today is the Big Day (well the first big day anyway)
January 23, 2014, 3:50 AM
I managed to sleep five hours last night which is not too
bad. I expected to not sleep at all, but
I went down no problem and even woke up once and was able to get back to
sleep. Woke up again at 3:00 and the
stomach churn and heart palpitations started with a vengeance and so here I am. I don’t have much to share really, but enough
of you have messaged me about the surgery details that I wanted to put them in
the blog and just give a general update on things.
The peaceful serenity I was experiencing during my waiting
period had been officially replaced by panic starting Sunday when I came home
from my birthday trip to Buellton. So
this past week I had almost constant and very physical anxiety about having my
boobs chopped off. Which is literally
how I envision it in my head. Like some
satanic ritual in a cult, very violent and dirty and gross and dangerous and
NEGATIVE. In my mind I keep reliving one
of the execution scenes from The Tudors, I think it’s when Anne Boleyn’s lady
in waiting is making her way to the platform and she is just shaking all over
and barely coherent and just sort of a shell of a person on the outside. I remember crying so hard during that
scene. And that is how I feel on the
inside. Scared. Terrified really. And like I am being led to
the guillotine. My rational mind tries to outweigh that by
calling it “getting the cancer out”, “removing the cancer”, or whatever version
of that phrase you want, but the fear is winning. When I compound thoughts of the surgery with
thoughts of chemotherapy, well it’s unbearable.
I am trying to stay present, so just get through today and then worry
about everything else later. That does
not come naturally to me and this week in particular I am really struggling. It’s also weird because I feel really good
and healthy. I ran this week and had an
awesome workout with my trainer on Wednesday and have been living totally sugar
and alcohol free (well, I did have a piece of birthday cake and alcohol free
just means I gave up my one-two glasses of wine a week) and so I feel
incredible. But the path to ridding my
body of cancer is basically going to make me weak and sick and I really hate
that. If only I could workout and/or
veggie out the cancer instead of having to cut it out and poison it with chemo. That would be so much better. I guess that’s why it’s called a fight. But still.
It sucks.
So I check in today at 5:15 AM and my surgery is scheduled
for 7:30 which means I should be out by 12:30-1:30, which is a great schedule because
it means Chris can still help the kids get ready for school and help our sister
in law Adela and my mom with the kid stuff.
In the afternoon, hopefully he can also help with pick-up and dinner
prep. All the talk about a care log and
plans, well, I have a couple versions of excel spreadsheets, the one my friend,
the worksheet queen at work designed, and one I designed but I have not
populated a single cell. I look at it
and it is totally overwhelming. I don’t have
a clue who is taking the girls to school next week or making their
lunches. I am sort of torn between
thinking I should’ve taken more time off of work before the surgery to get
organized, and being thankful I didn’t bc the panic could have been way
worse. I don’t know. I had all these master plans for being
organized while being debilitated – stock up on funny cards, thank yous and
bday cards so I don’t miss anything while I can’t drive or shop. Get the girls Valentines Day gifts in
orders. Make a bunch of frozen meals and
whole wheat muffins for the girls. Get
new tires for the car. CLEAN AND
ORGANIZE my house. How many of those do
you think I did? Um, none. Well, to be fair, I did make two turkey pot
pies with our leftover Christmas turkey but that was actually before I knew my
surgery date, so that was just luck. I
also did stuff that I didn’t even know I needed to do until pretty recently. I found
some cheap button-up shirts to wear while I can’t lift my arms and pull stuff
over my head. I ordered a meal service for the week after I
get out of the hospital, after our family is gone. I ordered scar cream. And over the time since my diagnosis I have
bought seriously like 8 books about breast cancer which I haven’t actually read
because I have had no time and some of them just make me cry but which I hope
to read at some point during my recovery.
Oh I also bought some stuff that is supposed to help you not lose your
eyebrows and eyelashes during chemo. So
I managed all the very basic, selfish and vain activities, but I did not get as
organized as I had hoped, especially about the kids. And that is causing me additional anxiety.
Being sick with kids is also just really weird. I feel incredibly guilty for getting sick at
all because of the impact it is having and is going to have on Tash and Baby K. This week has been another difficult Natasha
week. She is obviously totally connected
to my moods, and so when my anxiety spikes she becomes a holy terror. And then I become more anxious and frustrated
and impatient and we get into this negative spiral of one upping each other
with our ability to be horrible monsters. I need to try to get through this with more
grace so my poor child doesn’t suffer the consequences of my fear and
anxiety. How I do that, I don’t know. I also just yesterday was thinking about how
much my kids like to rest and snuggle against my chest and it seriously pisses me
off that they aren’t going to be able to do that for a long while, and even
when they do, my chest is going to feel very different and not as soft or
cozy. Last night I rocked Karina to
sleep and she was so content, and I thought fuck, this is the last time this
will ever be like this. So cancer is
taking that away from me and I want to punch it in the face – hard – and maybe
never stop.
On the flip side, having kids means I don’t really have a
choice about how aggressively to fight this or how quickly to heal or how to
try and have a positive attitude (or at least fake it when I can.) Sitting in a ball in the corner of the room
crying isn’t an option, even when I want to.
And when I explain to Tash what’s going on with me, it actually does
make me feel better because I explain it in a simple way and with a tone of
just going through the steps of getting it out of my body and moving on. Which is how I hope this whole journey
goes. So the having kids thing – there are
major stressors to that, but also some benefits. I think having kids is going to help me be a
better patient and survivor. I hope so
at least.
What else? Well, I
feel like I sound like a broken record, but I got probably 30 text messages
yesterday and even more Facebook messages, as well as calls from many of you
wishing me well today. The fact that so
many of you remembered the date of my surgery is astonishing, and then that you
took a moment to send me some love…well, it’s really incredible. It makes a difference to me every day knowing
that all this love and support and positive energy is coming my way. I tried to respond to each of you, but as I explained
to some of you, the more I talk or even write about the actual process of
surgery the more upset I get and so my responses were short and probably didn’t
fully convey my gratefulness. Please
know that I am grateful beyond what words could even convey. I feel much less alone…and that is a big
deal.
I’ll end with a quick request for the husband. Chris has been on baby duty for probably a
month now – Karina stopped sleeping through the night a couple months back and
it is exhausting, but Chris took on her overnight wakeups knowing that I wouldn’t
be able to lift her after surgery anyway, and really, I have been so incredibly
tired I think bc of the stress so he wanted to help with that. Natasha has also been having major night
terrors, so no one in our house is sleeping well, but Chris in particular is
not getting much sleep and is probably not getting all the love and attention
that I am. So, for those of you who are
close to Chris, if you haven’t already, can you send him some love and maybe
plan some time to take him out of the house for short periods of time to get In
N Out or run or hike or play basketball of whatever. A couple of my friends who are breast cancer
survivors say they thought that their husbands had the hardest role to play in
the whole process because they had so much responsibility but no one really
pays them much attention or checks in on how they are doing. I know I haven’t. I have been totally fixated on myself and
the kids. So he is probably going to
kill me for putting this out there, but he probably could use some small sanity
breaks, even for just phone calls with friends or whatever.
That’s it. It’s time
for me to brush my teeth and pack my hospital bag anyway (yes, last minute, I
know.) We will keep you all informed
after surgery.
Thanks for reading.
Love, Sherri
Friday, January 17, 2014
The Waiting Game and Caging our Kids
January 16, 2014
Happy birthday to me!
And my goodness am I feeling the love.
I mean I was already feeling the love through my blog and everyone’s
supportive messages wrt cancer, but now that it’s my birthday it’s like 24
hours of magnified LOVE. Yeah for me!
For those who don’t know me well, my birthday is my very favorite day of the year and I was thinking this might be a
depressing one, but nope. It has been really fantastic.
To be honest, I have been feeling really good this past
week. At peace maybe. Optimistic.
Healthy. Strong. All the
outpouring of love and offers for help have been incredible. I told my husband everyone I know is a
better person than I am. I must have
some kind of friend/family/coworker magic that makes all these incredibly
generous and kind people accept me into their lives and network (and keep me
there!). So thank you. EVERY SINGLE ONE OF YOU.
The only medical updates are that the surgeon confirmed that
the lymph nodes are clear (they do additional testing after the surgery and
there is a 5% chance that there could have been a false negative and the lymph
nodes could show cancer spread, but mine did not, Yeehaw!) and I still have the
double mastectomy and immediate reconstruction scheduled for next Thursday (And
still every single day wonder should I just do the single? Should I not reconstruct at all? How much pain am I going to be in? YUCK!) Oh
I did end up with a seroma under my armpit from the lymph node surgery, so I
have this like golf ball sized bump under my armpit and can’t actually rest my
arm all the way down, which looks gross and sort of hurts, but it is apparently
nothing to really worry about. They are
going to drain it during surgery next week. So again, all good news/no new news in the
world of breast cancer.
We did visit with the surgeon yesterday as our final consult
before surgery and we had nothing to talk about so we spent the time brainstorming
survival tactics for post-surgery with two spaztic kids. It was pretty hilarious. She suggested a life jacket, an inner tube or
a running cage whereby the kids could run sprints and then would be caged in
from touching me or pulling out my drains.
It was hilarious. She even skewed
her face up to mimic the kids face planting against the cage…I just love
her. Oh and she is super huggy. She
hugged me like three times. I feel like
I am in the care of a friend who knows me and cares about me and it is nice.
OK, so how have I been spending my waiting time?
Well, for starters I got my hair chopped off. It was a two-step process because my very
kind and conscientious hair stylist who is also a recent breast cancer survivor
refused to cut my hair as short as I wanted it the first time I went in because
she said my hair was too thick and curly and that I would not like the way it looked
super short. So she cut it moderately
short. But after leaving I realized I
didn’t really care how bad it looked, I wanted it short short so that when I
have chemo and my hair falls out (which they say will happen after the first treatment) it won’t be so
traumatic. I hope it works. And funny enough, it seems more and more that
Amy Robach and I are soul sisters, because I guess she did the same thing the
day after I did. She also has the same
diagnosis. Is the same age. And had a
double mastectomy. This whole scenario
is too common, really. I can’t say
enough how much I hate cancer. Here is
the article about her: http://www.huffingtonpost.com/2014/01/15/amy-robach-hair_n_4603252.html?ir=Media. How she came back to work just three weeks
after the mastectomy and was on national TV and is working while doing chemo,
well I just don’t know. I don’t think I
will be doing that, but we’ll see.
And here is a pic of
me with my short hair and my little love Tasha Belle. She didn’t even notice I don’t think that I
got my hair cut (or she hates it and doesn’t want to say anything
offensive.) I guess that is one benefit
of not really caring too much about how I look – I don’t even think how I look
is within her frame of reference.
We bought a reclining chair as well. We had three different people recommend
getting a recliner for immediately following the initial surgery and then
following the final reconstruction surgery to help with sleep (I have to sleep
on my back and CAN’T roll over) and to help me get up. Apparently I won’t be able to use my arms for
some period of time. So we bought this
super cozy lift up recliner that I think once I am healthy we are all going to
fight over bc it is NICE and snuggly!
When we told our surgeon about this purchase she thought we were crazy
because she feels like I am going to recover quickly and will be up and
running. I hope she is right.
I am also trying to establish some goals for this year that
are not related to cancer, and here is my preliminary list.
1.
Walk/Hike/Run 520 miles in 2014 (about 10 miles
per week, so far I am meeting this goal thanks to hikes at Trump with the
husband) Do as much of this WITH friends
and family as possible. Align this goal
with breast cancer/cancer walks and runs when possible.
2.
Try yoga again.
Give it a 30-day trial when I can and see if it sticks and helps manage
my wandering and alarmist mind.
3.
Write one thank you card, note, email or IM
every day so everyone knows how grateful I am for all the love and support.
4.
Call and catch up with one friend/family member
each week (or get together in person when possible). I am terribly over reliant on texting and Facebook,
I want to make it a practice to get back in touch directly in person with the
people in my life.
5.
Expand my nutritional knowledge and related
capabilities around healing and whole foods.
Learn to make tomato basil bisque from scratch (I want to do the 100
Days recipe, and may aspire to learn maybe 3-5 soup recipes from scratch) and
try two new recipes each month from the Cancer Kitchen cookbook.
6.
Maintain my current weight (or weigh less)
through December 31, 2014. Everyone
knows I still have about 20 pounds to lose bc of combined pregnancy weight
between the two girls, but I am being told it is going to be exceedingly
difficult to NOT gain weight while on chemo bc of the steroids and food
cravings, and then while I am on hormone blockers for the next 10 years. I say eff that. If Kylie Minogue can look hot after going
through this and while on hormone blockers, then I can be fit!
7.
Learn to say 25 key phrases in Maori
8.
Spend a week (or more) at Aulani in Hawaii
9.
Draft a business plan for two businesses I want
to consider starting and running at some point in the future.
10.
Volunteer to help another breast cancer patient
or at a breast cancer center once my treatments are over (this one is breast
cancer related, but I think it’s important)
I am hoping all of the above keeps my mind engaged and makes
this year more about health and dreams and connections than cancer…if you have
other suggestions, I am totally interested in how other people got through
their treatment mentally/psychologically.
I have also been getting up to speed on the incredible benefits
Cisco offers to employees with health issues.
In addition to like everyone I have ever worked with at Cisco who found
out about my diagnosis sending me the most thoughtful and kind notes and cards,
I have received flowers from I think four different people/teams, Shari’s Berries
and a one month membership to an organic farm delivery service. I know I am like a broken record, but Cisco employs
the greatest people on earth. Our SVP of
HR sent me a personal note and referred me over to our benefits lead who let me
know about these just really insanely helpful benefits that Cisco has
specifically for sick employees. I get
an assigned HR ambassador who gets all my benefits and HR questions answered,
so instead of having to contact various departments or opening up a case, this
specific individual does all that for me.
We also have a second opinion service where we can have our medical records
reviewed by SMEs in whatever illness we have, and these are experts from the
most prestigious medical institutions like the Mayo Clinic, John Hopkins, etc. We also have access to Stanford Medical center
resources and their library…there is just a lot. I am so very fortunate to be employed by the
best company in the world right now. How
I have managed to be so lucky in so many areas, I really don’t know, but
really, I am so lucky and I hope that doesn’t sound like bragging!
Many of you have also asked what you can do for me and I
think I mentioned previously that we are trying to create a care log which we
will distribute if/when we are able to get it together. In the meantime, a colleague I met through the
Cisco Cancer Support Network (another incredible benefit at Cisco) set up a
meal plan for me at Take Them a Meal.
The link is here: https://www.takethemameal.com/meals.php?t=KZSA2797 I don’t know a lot about the service but for
those of you who mentioned wanting to bring us meals, there is like a calendar
there starting two weeks after my surgery (we have family in town for the first
week, and then ordered a meal delivery service for ourselves the second week)
where you can sign up to bring or send something. NO PRESSURE.
I am totally only posting this because a whole bunch of you have asked. I have also found some super cool meal
delivery services in Los Angeles – paleta.com and sunfare.com that I think we
are going to try to leverage. I even
sent their contact details over to Cisco to get them potentially set up as
Cisco discount suppliers.
I think we are also
going to need some help with the girls, especially during weeks 2-5 after
my surgery, and again I am incredibly grateful for the number of you who have
offered to help care for them. Hopefully
this will be in the care log, but what would be helpful is either a scheduled
play date where I can come too but where they are engaged at activities that
mean I don’t have to pick them up or get on the ground and play with them, or
playdates/destination meet ups again where either I don’t have to be there or there
are activities where they will be engaged so I don’t have to worry about moving
around, picking them up, etc. And I
realize it is hard because we have two, so for the many of you who offered,
THANK YOU THANK YOU THANK YOU. I want
them to still have plans and to still be social so they don’t remember this
year as being painfully lonely or disappointing or whatever.
What else can I share?
I really have the best family and friends I could ever hope for. My husband in particular is really just
incredible. Every day he makes me feel loved and beautiful and like whatever
happens with my body and hair and anything else, he is still going to think I
am beautiful. And I know it’s sincere by
the way he looks at me. I am incredibly
grateful for that because it makes me feel normal and like I am going to be
OK. My mom and sister in law (who works
full time and has a 4 year old herself) are both going to stay with the girls
when I am in for surgery and my sisters are coming in right after to help for a
few days. I just feel loved. And grateful.
I’ll shut up about bc I know I am being redundant.
I think that’s it.
Thanks as always for reading.
Sherri
Thursday, January 9, 2014
Second Opinions and Other Lessons
January 9, 2014
As an FYI, I added a widget to the top of my blog where you
can now subscribe to get email updates when I post. Like I said before I am not super blog-savvy,
but hopefully that helps those of you who are REALLY interested in hearing ALL
my random thoughts as I post them. J
General Update:
We went in for our second opinion consult at City of Hope on
Monday. It was $800 for an hour long
consult, and it was a long drive, and the doctor was late for our appointment,
and IT WAS WORTH EVERY PENNY. As my husband
put it, you can’t overpay for peace of mind.
Let me start with just an overall
perspective shift. I have been sort of freaked
out about being a Kaiser patient with cancer because of this ongoing undercurrent of disdain for “HMOs” in general
and for Kaiser specifically being a subpar system. I have been worried even though I have NEVER
had a bad experience with Kaiser (other than sometimes longer than ideal wait
times for appts), I gave birth twice at the Kaiser hospital right by our house,
have never been prevented from getting referrals or whatever it is that I need.
So I’ve been nervous despite a really good personal experience and despite
every single person in my network who has Kaiser or has had a Kaiser experience
telling me the same thing. So I expected
to visit the City of Hope and to be blown away and to feel even worse about
Kaiser and to then need to prepare to potentially pay out of pocket and make
long drives for better care. I was so,
so wrong.
The City of Hope from a pure appearance point of view is
fine. It’s like any other medical facility, really. There is some nice grass, and some not so
nice grass, and some trees and the mountains in the background, they have friendly
volunteers who walk you around, inspirational signs and nice paintings hanging
on the walls, a bunch of different courtyards for hanging out or eating. Again, it was nice, fine, but not this majestic
castle of CANCER MAGIC that I had built it up to be in my head. Which is totally my issue, not theirs. I had obviously created unrealistic expectations
in my brain. The doctor we met with was
also fine. She was smart and direct and
completely validated the treatment protocol we were leaning toward, answered some
of our questions, and that was it. She
said the plan that Kaiser had laid out (there were really three plans, but the
one we had landed on) was exactly what she would recommend. She gave me some ideas about the plastic
surgery. She did a double check on scans
and reports and then an actual physical exam and basically revalidated what we
already knew and reassured us that we had made a well thought out decision
about treatment. She was also very
business-like. Which was fine. But compared to my surgeon at Kaiser who is a
little more spaztic and personable and animated…well my Kaiser surgeon is a
better fit for my personal style and needs, so again that was totally
validating. We walked out of the
appointment, I took a deep breath, said “okay” and it was like I had finally
achieved peace with my decisions. (that didn’t
last long…I am totally second guessing some of my decisions now…but it was a
nice feeling while it lasted.)
The reason I am sharing this is not to say anything positive
or negative specifically about the City of Hope or Kaiser. It is to just have a reference about second opinions. I think they are important. I think it helps some people, like me, who
may have lingering questions or doubts about what they are doing to feel
validated OR I am sure in some cases to consider additional information. I was feeling like I was running out of time and
wasn’t sure a second opinion would REALLY be worth it, and yes, for me it
was. I am so glad we made the time and
found a good facility to get it done. I
would encourage anyone else with significant health news to do the same, even
if just for peace of mind.
We also had the breast surgery prep class yesterday (Wednesday). They went over what to expect, how to deal
with your drains (which is going to be the worst part for me FOR SURE),
exercises to do after surgery and how long to plan to be less than fully
mobile. They also ordered us all custom
mastectomy camisoles. Again, I have to say
I don’t know why I was freaking out about Kaiser because they have impressed me
every step of the way.
So now I wait. 2
weeks from today I go into surgery.
Leading up to that I have another surgical consult, another plastic
surgery consult and my pre-op appointment, but outside of that, I just get to
be myself. We are working on a care plan
and frozen meals and just life management in advance of me being less than 100%
to try and keep the Huie machine running.
Any suggestions, resources, etc to help us with this are much
appreciated. (like does anyone know
anything about Lotsa Helping Hands?) I am also trying to spend as much time as
possible on the kids and on me, hiking, writing, reading, resting…I probably should’ve
been spending more time on me anyway and am so sad it took a cancer diagnosis
for me to get a clue here, but the change has been nice nonetheless.
What I’ve Learned:
Have you all heard
this quote?
“Everyone you will ever meet knows something you don't.” ― Bill Nye
I’ve always loved this
quote. My husband used to laugh at me because
he said I was weirdly social, like I could make friends at the grocery store, I
talk to anyone and he thought it was funny bc sometimes people don’t want to be
talked to. I haven’t been that way in a while. I think I
have been all consumed with my kids – and in social settings trying to ensure
that they don’t kill themselves, or each other, or throw a tantrum of epic
proportions that might get us kicked out, so I have not only ventured out WAY
less, but when we go out I am like on mommy watch and not engaged with the
outside world. Well, my cancer diagnosis
has put me into situations where I sort of have to engage, or feel more compelled
to engage and honestly has just put me
in more situations without my kids so I guess I am more accessible. And so far every single person that I tell
that I have breast cancer has some sort of knowledge nugget for me. Which has actually made me more confident
about telling people. It’s like a
positive spiral of learning and connecting, I guess. That sounds so cheesy, but it’s true. I
think it is all going to help with me develop a better treatment plan and
recovery so I am incredibly thankful to have become even slightly more open to
this kind of learning.
I am also gathering all sorts of intelligence on how to be
honest with Natasha about what is happening with me without scaring her. Like I haven’t used “cancer” with her and I
sort of don’t want to. I talked with the
Kaiser social worker yesterday and she said it probably was not age appropriate
anyway. SO I think I previously mentioned
that I had told her I have a boo-boo like a ball in my boob and that I have to
have surgery so it doesn’t spread. She
totally gets that. Like I wrote before,
she is performing her own lumpectomies and she is actually super excited to
tell people about mommy’ s surgery.
Which is kind of weird, bc as much as I have become slightly more open
about sharing my diagnosis I really don’t need random people at the grocery
store knowing intimate details of my life and she doesn’t yet have a filter
about sharing that kind of news.
Everywhere we go, she’s like TELL THEM ABOUT YOUR SURGERY! I have also mentioned that I will be in the hospital
and that I will probably have to sleep in a chair or something, so she is
trying to come up with solutions for me – what about Karina’s rocking chair? What about the chair at grandma and papa’s
house? It is very sweet. I am a lot less worried about her, but still
have been gathering some resources to help me help her along the way:
·
This very cool article from Huffington Post was
shared with me by a friend to whom I responded that I am not at all brave and
that when I lose my hair I expect to sit in a dark corner of my house and not
to let anyone see me until all my hair on my head, eyebrows and eyelashes are
back. But, the article is still very
sweet about how to explain a cancer cap or scarf to a kid: http://www.huffingtonpost.com/tony-posnanski/explaining-the-brave-hat-of-fighting-cancer-to-my-4-year-old-son_b_4414015.html?utm_hp_ref=parents&ir=Parents
·
I found a few books on Amazon. I actually can’t read any of them yet
without tearing up so I may or may not use them. I actually thought they might be nice for
Tash to share at school If I ever do have to show up with no hair (like she has
this big, big international festival show in March when I will likely be bald
and I really don’t want to miss it, so who knows, I may have to venture out in
the world against my will at times) But
these books are really great, just a little too tough for me right now.
o Nowhere Hair: http://www.amazon.com/gp/product/0984359133/ref=oh_details_o01_s01_i00?ie=UTF8&psc=1
o You are the Best Medicine:
http://www.amazon.com/gp/product/B0058M5JM4/ref=oh_details_o01_s02_i01?ie=UTF8&psc=1
o
Mommy had a Mastectomy http://www.amazon.com/gp/product/0910155607/ref=ox_sc_act_title_1?ie=UTF8&psc=1&smid=ATVPDKIKX0DER
I also was cleaning up Tash’s Legos and realized the bald
headed Friends Legos are ideal for preparing her for my hair loss. I had been
thinking about getting like the bald Barbie (I think there is one, right?) Or
the Kimmie Cares Dolls, but I don’t know, they seem a little over the top to
me, so I thought these Legos might do the trick…especially if I opt to get a
wig because with these Legos you get to pick out and pop on whatever hair style
and color you like. Of course they have eyebrows
and eyelashes and permanent eye shadow and lipstick, but I think they might work.
In our class yesterday a woman gave me the business card for
this cancer support community in Redondo Beach that I had never heard of – free
yoga classes for patients, caregiver programs, kid’s play therapy and arts…it
sound amazing. After she told me about
it, I had two other people in two totally different settings tell me about it
as well so I think the universe is telling me to check it out. I think we will all go there as a family, we’ll
see. A lot of the stuff putting me out in the world as a “cancer patient”
freaks me out, like it’s too real and public and that is when I get scared…but it
does sound amazing and it is totally free!
http://www.cancersupportredondobeach.org/calendar
I also bought myself these – aren’t they cute? Apparently I will need slip on shoes for some
time after surgery and I thought it was a great excuse to buy myself some uggs
which I have wanted for YEARS and to support breast cancer in the process. Can’t wait for them to arrive.
Sorry, that was a lot of random stuff all pieced
together. If you made it through, thank
you. Let me end with another quote that
I got from the Kaiser cancer book – it reminded me of the radiology tech who
helped me get through the surgery last week.
“The only courage that matters is the kind that gets you from one moment
to the next.” (Mignon McLaughlin.) That
is the kind of stuff that is going to get me through this bc I don’t think I am
exceptionally strong or brave, but I do think I am great at formulating a plan
and executing against it. That is what I
do at work every day and that is my comfort zone. So that is what I chant to myself
constantly every day when my mind starts to wander or I feel overwhelmed or
scared or tired or whatever. I just have
to get through this moment for now…
Thanks for reading.
Sherri
Saturday, January 4, 2014
I Am a Big Cry Baby
January 4, 2014
The big news today is that my lymph nodes are clear. They removed five yesterday, I thought they
were only removing one, but I guess with the blue dye thing it lights up the
sentinel nodes and if you have multiple that light up they take out
multiple. Anyway, they were all clear
which means the cancer hasn’t spread. Which
also means unless something crazy pops up, the Stage 2 diagnosis is still
accurate (bc of the size and dynamic cancer cells). I feel a lot more optimistic and calm
today. *Deep breath*.
For those who like to know the details about this journey, let
me explain how we ended up in surprise surgery on Friday. (happy early bday to me, I guess!) We went into our scheduled surgical appointment
on Thursday and were informed that we were scheduled for surgery the next day. Apparently getting on a surgeon’s calendar
when it’s not emergency surgery is a small miracle and so we got “squeezed in”
once I informed the oncologist and surgeon earlier this week that I was doing
surgery first and chemo second. This may
have been a blessing in disguise bc I cannot put into words how much I panicked
over the next 19 hours or so leading up the surgery. It was bad. I cried a lot. I was not functional. So if I had received more advanced warning,
perhaps that panic would have been prolonged.
Who knows. Anyway, so we had the lymph
node surgery yesterday, and I will talk more about that below, and then my big
surgery is scheduled for January 23rd. Based on that timing, chemo will be scheduled
to start probably beginning the second week of February. I wonder if there is a special Valentines dinner
venue for bald cancer patients? (Ugh, I
am so sad to lose my hair, but even more so to lose my eyebrows and eyelashes,
you guys are going to hear a lot of worry and complaining about that, apologies
in advance.)
Our check in time for the lymph node surgery was 7 AM so I
woke up about 6:15 and started crying right away and didn’t stop for about 2 ½ hours
until I was wheeled into radiology and the radiology tech was incredibly kind
and calmed me down. It was weird too because
no one else in surgery check in seemed scared or upset. I felt really stupid and immature and
embarrassed but I could not stop. I was
scared shitless of getting anesthesia, which I have never had, but also of the outcome
of the surgery. What was I going to do
if the cancer had spread? Anyway, I can’t
even describe it but I was STRESSED OUT AND SCARED. So much so that I swear I was the “special
case” in surgery that day. EVERYONE
stopped by to check on me and they had my sedatives ready before I went to radiology
even though my surgery wasn’t for another 7 hours. My surgeon was even called in between
surgeries to come talk to me. And as I
said before, she totally seems like someone I would be friends with and she
said she would probably be exactly like I was if she had to have surgery, she hasn’t
ever had surgery before and she once had a dream she needed surgery and was
terrified. It made me feel a little bit better, but still the tears
flowed. So it was time for me to go to
radiology and I am a crying mess being rolled through the hospital in a
wheelchair and everyone is giving me those sympathetic smiles along the way and
it is actually making me mad, but then I get to radiology and the tech there is
like this golden goddess of compassion.
She has long golden curly hair and golden brown eyes and a slight
accent, maybe Persian (?) and she leans over and asks me, “Sherri, honey, what’s
going on?” like we are best buds. So I
weep out that I am really scared and I know I’m being ridiculous but I can’t stop. So she sits down and says “Let me tell you a
story. My mom was diagnosed with stage 3
breast cancer 18 years ago. She was 70
years old. She had diabetes, heart
disease, high cholesterol and was overweight. Her doctors told us they were
going to let it run its course bc she wouldn’t live through surgery. But we told them NO. If she is going to die of the cancer
eventually, and there is a chance she might live through surgery and then not
die of cancer, we want to take that risk.
(And they had to fight apparently fairly aggressively to make it
happen. But they won.) So she had a mastectomy on the right side and
she lived. And she lived another 11
years cancer free and then sadly died of a heart attack. But we had 11 more years with her. She got to meet my daughter. And she didn’t die of cancer. And you, Sherri, you are only stage 2 and you
are in excellent health. You are going
to beat this and you are going to be so proud and your kids are going to be so
proud. And all you have to do is be
brave enough to show up, like today. I
know it’s scary but you are here. You
showed up and you are doing what you need to do. You should be so proud. OK?” I
responded OK, and it totally worked. I
didn’t cry the rest of the day. Which was really funny, bc when I was wheeled
back down to surgery they were like, OK, ready for your IV cocktail? And I was like, nah, my surgery isn’t for
hours, and they were like, are you sure?
And I swear they came by like every 5-10 minutes to check-in because
truly I was their “special case” for the day. SO EMBARRASSING.
The other new thing we learned, which is disappointing and
terrifying at the same time, is that if my tumor tests negative for HER2, then
I only have one option for chemo drugs.
I don’t think I wrote about this before, but with a HER2 equivocal
result (which is what I have now, which is a result saying they basically don’t
know whether the tumor will be receptive to Herceptin or not) I get treated as
if I had a HER2+ positive result which offers two different chemo options. One is the option which has been used for a
really long time and has great results which is the one Robin Roberts used but
it also has the risk of causing leukemia (which happened to Robin Roberts) and
it also can potentially cause heart disease.
Isn’t that bullshit? We can cure
your breast cancer, but you might get another worse cancer that can only be
treated with bone marrow (for which I would probably have no doners bc I don’t have
any full blood siblings) and it might wreck your heart. Or a second newer option which was developed
at UCLA that has very similar survival results but offers a shorter cycle, and
no risk of leukemia or heart disease (well other than the Herceptin risk, which
is a separate medicine, and there is no getting around that.) So that seems like a no brainer – the newer
version, why anyone would NOT pick that version I don’t know. BUT, if my HER2 test comes back negative,
that is not an option bc it was specifically developed for HER2 positive
results which used to be a really bad result.
So I explicitly made the decision to do surgery first bc I want to know
whether the tumor is HER2 positive or negative so I can get the RIGHT chemo
treatment which might be the old school version
which has way worse side effects. It
totally sucks. But again, at least there are options, right? With so many cancers,
there aren’t.
So I think that’s it.
Leading up to the big surgery on the 23rd, we have a bunch
more appointments. We have our consult
with the City of Hope on Monday, a consult with the West LA Kaiser the week of
the 13th to learn more about the flap reconstruction procedure where
they reconstruct with your own tissue instead of with implants, and then a
whole bunch of pre-surgery stuff. I also
made an appointment to get my hair cut off.
I need to find a short short style I love bc after the surgery I won’t
really be able to wash my hair all that much and I would rather have short hair
fall off during chemo than long. We also
think it will be less stressful for the girls.
I’m pretty sure the husband is going to spend some time during this
period perusing Victoria Secret’s catalogues for my new, potentially bigger
perkier boobs, which I suppose is his one benefit of having to go through this
shit with me. And of course, I’ll try to
spend as much time with the kids as possible so when I can’t they don’t think I
suck.
I’ll be going back to work on the 8th (which is a
relief, I was really worried that there would be no transition period and my
work/team would have to pick up the falling pieces with no guidance) but will
only be working around the millions of appointments and will then go onto
disability for the surgery on January 21st. I have no idea how long I’ll be out, I
imagine anywhere between 8 weeks and 6 months depending on how tough the chemo
is on me. Which is also weird. I get more disability time off covered for an
illness than I do for having a kid…which I’m not going to complain about, I
need the time, but my thoughts on the crap that is US maternity leave could be
a whole blog of its own.
I’m also keeping a list of actions I can take to make my
personal experience with breast cancer have some meaning. Like, I really think there should be some
education to first time moms who give birth after 35 about their increased risk
which encourages them to be diligent about breast self-exams and just awareness
around breast size, shape and changes. I
had NO IDEA that there was an elevated breast cancer risk to me having my first
kid after 35. So I need to figure out where to go with that, like how to make
that a public health thing. And I have a
whole list of Kaiser operational things that I am going to send to them. Ah, the benefits of treating an Ops Manager,
I guess. (Hmm, there is an idea, maybe I
need to be an ops manager at Kaiser for their breast cancer clinic, I would be
SO good at that!) Also, I am totally doing every breast cancer walk/run I can
afford to do because there is still the need for so much research. The whole chemo thing with the side effects,
it pisses me off. One treatment to save
your life shouldn’t cause another disease that can end your life. But when I tell people (and this is mostly
men, no offense) that I have breast cancer, they are like, oh well, if you are
going to get cancer that’s the one you want.
NO ONE dies of breast cancer anymore.
Um, fuck you. Yes they do
ass-hole. And there is the need to do
more because of the number of women, especially YOUNG women that it affects. I also signed up for one of Susan Love’s
research studies through her Army of Women initiative. (despite the fact that her stupid cancer book
is like its own little cancer with the plethora of bad news contained in those
pages, I had to stop reading it bc it felt like the rest of my life I was going
to be in pain and would hate my reconstructed boobs, etc)
Oh and lastly, for those wondering, I am strongly leaning toward
the double mastectomy. Stupid Susan Love
would call this an American epidemic of consumerism where people think more is
better, and my oncologist said NO ONE medically would recommend I remove a
healthy breast, but after the scare on Monday, honestly, I don’t ever want to
go through that again. I think I will
die from heart failure if another lump is found and I have to go through the process
of having a biopsy and WAITING to find out of it’s cancer. Removing the second breast means I go from having
about a 1 in 6 chance EVERY year of my life of getting breast cancer on that
side to a 2% lifetime risk. I plan on
living at least another 40 years and 2% TOTAL risk sounds way better to me than
17% annual risk. I’m also leaning toward
implants over the flap surgery bc the flap surgery to me just sounds super
invasive and gross. But we’ll see if the
second plastic surgeon sells me on it.
I think that’s it. As
usual, thanks for all the support, flowers, books, calls, IMs, jokes, emails, “fuck
cancer” product links, “They’re fake bc the real ones tried to kill me” product
links, thoughts, advice, etc. It is sort
of sad to me that my network is so virtual as the vast majority of you are not physically
close, but you are all totally in my heart and I appreciate you so much.
Thanks for reading.
Much love.
Sherri
ME BEFORE SURGERY (probably yelling at Chris to NOT take my pic!)
Thursday, January 2, 2014
THE SECOND MASS WAS NEGATIVE
The surgeon called yesterday and the second mass was negative. Thank goodness. I was thinking all sorts of crazy thoughts imagining the cancer spreading all over. It was a horrible two days. Having the stomach flu was also HORRIBLE, maybe the most sick I have ever been, but it definitely took my mind off cancer. I'll try to write a longer post after we meet with the surgeon to schedule surgery this morning.
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