Surgery and Recovery Going Great, but I am PISSED

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

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

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

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

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 23^rd.  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 23^rd, 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 13^th 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 8^th (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 21^st.  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!)

 

                                                    ME AFTER SURGERY, groggy from the drugs

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.