They found a second mass

December 31, 2013

I’ve been up with anxiety since 2:30 this morning. So let me be the first to wish you a happy new year, although I am not looking forward to this year all.  Which is not to begrudge anyone else their fun and excitement and happy plans, but ugh, I do not feel like celebrating at all.

First has everyone seen this?  http://www.huffingtonpost.com/elana-miller-md/love-is-holy-shit-i-have-_b_4512572.html

I found this incredibly moving not just because of the inspirational message but because it reinforces my hate for cancer.  The power cancer has to just make your heart stop and overwhelm your body with fear and to alarm those who love you.  I hate it.  It is a piece of shit.  And then damn for that woman's ability to turn that around into a message of love so quickly.  I am SO NOT THERE YET, but some of this post may take on a different tone bc I read her post.  We’ll see.

So yesterday was literally the worst day of my life.  I went in for a standard double ultra sound which they do at Kaiser before you schedule your surgery so they have recent baseline scans of your breasts to reference.  AND THEY FOUND ANOTHER MASS.  The doctor said it might be a second cancer in the same breast or it might be nothing, but they had to biopsy it on the spot.  So for those of you who follow me on Facebook you know that I was in a foul mood, super pissed off bc I waited almost an hour past my scheduled appointment time  and I wasn’t super friendly or nice to the staff who were helping me at that point.  But ohmygod, when they told me there was another mass and I needed another biopsy, I just stopped functioning.  I was hysterical and sobbing and just fell apart.  I had gone to the appointment alone bc it was standard and I wasn’t worried and then there I was falling to pieces with perfect strangers.  So the ultra sound tech sort of became my caregiver.  She got me Kleenex and hugged me and rubbed my arm, and when I told her the last biopsy had hurt A LOT, she made sure to tell the doctor to give me extra of the numbing agent, and when he did and it still hurt, she told him to give me more.  Which he did.  And then I didn’t feel a thing.  And somehow they were able to get it done quickly even though my entire body was shaking and shivering and convulsing with my sobs and I was trying to ask them questions but couldn’t get any words out.  They got it done in probably 2-3 minutes.  Afterward the doctor held my hand and said he was sorry and that whatever it was they would have  a path to treat it.  And they both tried to help me through the worst moments of my life.  (to date, I suspect a lot worse in coming when I go into surgery and chemo.)  Weirdly, I don’t think I would have even written about the very human and compassionate treatment I received from the tech and doctor had I not read that woman’s blog post about love.  I felt it, but it wasn’t what stuck with me, so I need to change that perspective, it is just so hard to see beyond the fear.

Then I had to wait around to get another mammogram to make sure the marker had been inserted and stayed in the new mass.  So even though they were running way behind and patients like me were pissed that they were running way behind, they let me stay in the ultra sound room until I got it together enough to walk back to the mammogram waiting room, and then walked me there and left me with the other patients.  Who could obviously tell that I was a mess.  So after talking amongst themselves for a few minutes, one of the women asks me, you all right?  And I just start sobbing again.  I didn’t even say anything.  They have no idea what is going on although I am sure they suspect a mass was found or whatever bc we are in breast imaging, but these two women just start talking about how God doesn’t give you anything you can’t handle, and how it’s going to be OK.  And they just kept talking and talking until I stopped crying and was laughing at some of their stories and they helped me get through those moments.  So it was a horrible morning, but thank goodness for the kind people who helped me get through it.

I came home to find that Karina had been throwing up pretty much nonstop since I left for my appointment.  As soon as my mom left, she threw up on me.  So I ended up taking her to urgent care in the afternoon (where she threw up on my again in the waiting room and of course I had packed spare clothes for her, but not for me) and spent five hours there, she had blood work done, got an IV and then we just had to sit around waiting for the labs to come back.  It was hell.  Trying to get a 16 month old to stay on a hospital bed with no toys and no phone (my phone had died about an hour in and not thinking I was going to be there ALL DAY, I didn’t bring my charger.)  She was crying and kicking, and of course after a biopsy you aren’t supposed to carry anything on that side or push or pull so I am managing her with one arm and it was hard and horrible.  So at the 5^th hour, I am like, I need to get the hell out of here.  So I ask the nurse if we can go, and of course start crying bc I am like today has been a rough day, I haven’t seen my husband, I had to get a biopsy, basically word vomit spilling out of my mouth all over the nurse who then starts crying bc she says she  feels so badly for me and that I have had to be there for so long.  At this point Karina had taken the whole IV, she had been able to drink pedialyte and had not thrown up since we first got there at 2:30 but the freaking labs were taking FOREVER!!!!  So she got the doctor, he examined her and said OK and he would call when the labs got back in.  I drive home and am not even home 10 minutes when I get his call that her white blood cell count was high which indicates a bacterial virus and we have to come back bc she needs to get some shots of antibiotic.  So I sent Chris and then sat on the couch with Tash watching TV.  Poor Tash who just wants me to chase her around the house and dance and tip toe and pretend to be a bear and who I am sure I am disappointing nonstop and will continue to disappoint as I go through treatment bc I just did not have it in me to run around the house being a bear.  I barely had it in me to sit on the couch and not cry while we watched Chuck the Truck or whatever. 

When we went to bed, Tash was like, can you wake me up first tomorrow?  I want to be the first person awake.  And I said, well I have to be awake to wake you up.  And she said, yah, that, that’s what I mean.  You first and me second.  I know its bc she wants time with just me, poor thing.  Ugh, how am I going to not be a sucky freaking tired mom this year. 

Today I have to go back and meet with the oncologist again, then we have Karina’s appt with the pediatrician to check on her blood and then I have the Kaiser counseling appointment to talk about how much this all sucks and how the hell am I going to get through it.  Happy New Year’s Eve to me.  I guess thank goodness for Kaiser bc I can’t imagine how much we would be paying out of pocket right now if we had a PPO.

It’s funny in a sad way too because I remember last New Year’s Eve reading peoples posts on Facebook where they were like good riddance to 2012, like it seemed that a lot of my friends had bad 2012s.   And I didn’t understand it.  I didn’t remember much bad going on in 2012.  But this year, well I was so glad to get rid of 2013.  2013 has been a shitty year, starting with new year’s day where Tash had to get four stitches in her eyebrow, going back to work full time in March, being asked to leave Tash’s preschool in April, deciding we were going to move and then deciding it was too expensive and risky, and now being diagnosed with breast cancer.  Of course there were  good things about 2013 – work was great from the point of view of getting positive recognition and promotion there, we had a couple of great vacations, but really I was so looking forward to 2014.  Not anymore.  I keep singing that Rent song How Do You Measure a Year in my head “ five hundred twenty five thousand six hundred minutes…”  I once started a holiday letter with those words bc my year had been so incredible and I had fit it all into that many minutes.  I thought that was really cool.  This year I am aware of those minutes bc I just need to get through them to get to this time next year and hope that I am healthy and have hair regrowing on my head and brows and lashes and that I have learned and become a better person through a year of hell and sacrifice and not being available for my kids.  That I will have time to make up for that in 2015 and beyond.  That I will have a lot more minutes.  It’s overwhelming.   Especially when I can’t sleep to escape it all.  I also hope that I am more aware of the love along this journey bc I am scared and anxious and can see myself getting and staying stuck there.  I already am struggling with engaging with friends and coworkers, am more inclined to just withdraw and re-emerge when the trouble is behind me.  And I hope it is behind me.  As soon as possible.  So we’ll see.  I hope for a lot I guess, and perhaps that is my 2013 resolution, to stay hopeful and to get healthy.  It doesn’t really feel strong enough, so I reserve the right to change it over time, but for now, it’ll do, I guess.

BTW – Did I mention that Natasha has been going around the house performing lumpectomies?  I told her I had a ball in my boob that the surgeon had to take out, and she got these community people block figures for Christmas so she has decided the female construction worker is a mom and she has the surgeon figurine remove a ball from her boob several times a day and has explained the process to my mom in some pretty good detail.  She is so smart and funny and I just love her so much.  I am not sure how I will explain that the ball became the removal of a whole boob bc god that sounds horrifying and scary, but I guess I will cross that bridge when I have to.

As always, thanks for reading.

Sherri

Plastic surgeons are like the Barney Stinsons of the breast cancer world

 
December 28, 2013

Sorry this post is going to be really erratic bc it has been hard to get time to sit at the computer while taking care of both girls (Chris is working sales year-end, so it is me solo, and you all know I am not great at that.)  But I wanted to get an update out there mostly for the Florida family and a few friends who were looking for info on treatment path and timing.  This is a really long post bc it goes through all the treatment options and what I see as the pros and cons and also adult disclaimer – there is detail in here about my current and future boobs so if that makes you uncomfortable then don’t read.

The breast cancer gene test came back negative, thank goodness!!  Which means I am basically in control of my treatment path (to an extent) and can determine what I want to do and in what order.  I am most relieved to not have the gene because I was so worried about Natasha and Karina.  They will still have a higher likelihood of getting breast cancer now that I have had it, but not as high as with the breast cancer gene.  So, yeah, good news in the world of breast cancer.

Now, having options relative to treatment though is actually more stressful than I would’ve expected…I mean they are all scary options, really, all mean a disfigured body and all have different risks, differences in recurrence potential, different amounts and levels of surgery, different follow up plans and potentially additional treatment paths…It’s overwhelming and might be easier if someone was just like – this is what you do to get through this with the best result.  But, and this is a good thing, so much progress has been made with breast cancer that there are options and good options is good news overall.

Since my last update, I got the breast cancer gene results back, met with the oncologist and a plastic surgeon, had an EKG and have had follow up conversations with the cancer surgeon probably 4 times.  (poor thing, she might fire me as her patient, but I have A LOT of questions.)  The oncologist is wonderful.   She gave us a lot of good detail on what to expect with chemotherapy, side effects, duration, etc.  But I have to say the comedic highlight of this experience so far is the plastic surgeon.  Really, all he cares about is how you look after the surgery, which is kind of a nice change when I am so incredibly sick and anxious about losing my hair and eyebrows and eyelashes, not to mention one or both boobs.  So the plastic surgeon is all like hey, so do you want to go bigger? How much bigger?  Well, to be perfect you should do this, and we can improve the other one by doing this, and then throw in a tummy tuck and you will be modeling swimsuits by the end of the year.  Seriously.  He actually said that out loud.  I should probably question his credibility but really, that is his sole aim in life, to make your body look as good as it can after surgery.  For that one hour appointment, we almost entirely forgot about the cancer and were just excited about the potential for my Palos Verdes Mom Body.  (PVMB as we will lovingly refer to it) J  It was an excellent break from all the stress and heart ache.  And we decided (like the title suggests) that he is the Barney Stinson on my team and hope he is able to rebuild my body so that it’s legen..wait for it…dary!

Also, no one on the team is talking about dying.  Which is really good.  Like it’s not even on the radar.  They will have to check my lymph nodes and understand whether their assumption of stage 2 is accurate, but everyone seems to feel really like this is the treatment process to get the cancer OUT and then long term survival should be expected.  I hope that is accurate and not overly optimistic.

If you have any thoughts on treatment, I am totally open to suggestions, tips, thoughts, opinions, resources, references, referrals, whatever, because I am torn on a decision.   I have laid out the options below along with my thought process on risks.  Please feel free to message me if you have any thoughts that might help.

·         First  I have to decide whether I want surgery or chemo first.  If I opt for chemo first then there is a chance they can shrink the tumor down which would enable a more  cosmetically successful lumpectomy, maybe.  It might not. So it’s risky either way, and with a lumpectomy, risk of recurrence is higher than with mastectomy PLUS I would also have to do several months of radiation on the lumpectomy spot.  They have said it is very targeted radiation so while it is like getting an x-ray every day it is only on the one spot and so there are no known health risks, it might burn the skin and cause discomfort.   If I get chemo first, they will also potentially have to over-treat/medicate me bc my HER2 test came back equivocal so they would give me a medicine called Herceptin in my chemo drip and after chemo I would have to continue to take that for some period of time.  Herceptin is a serious drug which has a small risk for causing heart disease, which I may in fact not need.  If I do surgery first then they can send the tumor out for testing again to see if they can get a HER2 positive or negative result and then make a decision on Herceptin based on whether I actually need it.  So I am heavily leaning toward surgery BEFORE chemo.  My only lingering concern is that I will then go into chemo potentially weaker after the surgery AND if the cancer has spread we won’t be treating that for almost 2 months because of the recovery time from surgery.  Any thoughts? 

·         The next thing I need to decide is what kind of surgery I want to have -  lumpectomy, single mastectomy or double mastectomy.  I am, heavily leaning toward a single mastectomy bc I want to reduce my recurrence risk as much as possible, but I also don’t want to go overboard on the medical intervention.  So the tumor they think is 3 cm and they are telling me my boobs are kind of small-ish and so if they took the tumor out without chemo there would be significant loss of tissue and size and I would basically live with half a boob.  Also recurrence is higher with a lumpectomy, so recurrence risk is 5-7% in that same boob as opposed to 2-3% for a mastectomy.  While those are small numbers, it doubles the risk if I have the lumpectomy and I DON’T WANT TO GO THROUGH THIS EVER AGAIN plus I will look weird and have to wear a foob in my boob for the rest of my life.  Plus there is the radiation.  BUT, then I don’t have any other surgical intervention which I kind of like.  With the single mastectomy, the recurrence is lower, but the surgical process sounds like minor massacre and the reconstruction process seriously makes me want to pass out.  I can also choose to have a double mastectomy (I am waiting to find out if that further reduces my recurrence risk) but the second one would be considered basically discretionary surgery and my team is NOT recommending the second one bc I don’t have the cancer gene.  If it greatly reduces my risk for recurrence I will strongly consider that.  Again, totally open to thoughts.

·         Lastly I have to sort out reconstruction options and I have to sort them out before I go into surgery bc the most successful reconstructions will BEGIN at the time of cancer surgery.  I have totally thought about just NOT doing reconstruction and living boobless but everyone who knows me says I will feel sad and abnormal for the rest of my life if I do that, so I am not inclined in that direction but could be influenced if anyone has stories of friends who opted not to reconstruct and are totally fine that way.  My plastic surgeon is recommending implants.  And he would do a tissue expanded in the removed breast and then fill it over time and would also do a lift on the other side and potentially a small implant so I was even and better proportionate than my natural body.  (Only Barney Stinson would be thinking about that in the process of cancer treatment.)  The other option is to do a tissue implant which I might be able to get a different Kaiser facility to do but he thinks I am not a good candidate for the procedure bc I don’t have enough belly fat.  (and I would like to insert a little eff you to the MANY people who have asked me if I am pregnant after having Karina, apparently I am quite fit with regard to fat/muscle on my abdomen, but I have a lot of excess skin from stretching during pregnancy so there!)  So I can go get a second opinion either at the Sunset Kaiser or at this basically like semi-famous place in New Orleans where a coworker referred me and where Angelina Jolie went bc there are now option where  they can take tissue from my belly, back and butt to create real tissue boobs.  The benefit to the tissue surgery is that I guess the boobs look and feel more natural and it is a lifelong solution, like unless there is an issue you don’t ever have to deal with your boobs again, whereas likely implants at some point in  a person’s life are going to need to be replaced.  The tissue surgery though seems excessively intrusive/impactful bc they would have to cut into up to three other body parts to remove the tissue and then they have to connect the tissue with blood vessels and it all seems really like A LOT of surgery and medical intervention.  The other benefit to that though is that you sort of get like a tummy tuck at the same time as a boob job.  I am leaning here toward implants, but of course you guys know I’m a freak and having plastic and saline in my body totally freaks me out too, and there are risks to the implants too, like the tissue still needs to heal.  Plus there is at least one follow up surgery to remove the expanders and really all of the reconstruction sounds disgusting.  And there is some process I’ll have to deal with drains which honestly also makes me want to pass out, so we’ll see how that goes.  Oh also, if Sunset can’t do the tissue surgery and so I would have to go out of network to the New Orleans place I doubt Kaiser would pay for it and we would be talking tens of thousands of dollars out of pocket.  Chris says he doesn’t care bc I have to live with my body for 50+ years hopefully, but I care.  I don’t want my kids to not to go to college bc I had to buy myself the best boobs, or to not be able to move if/when we want bc any extra mortgage contribution went to my boobs.  That would be sad. (BTW, a second opinion at the City of Hope costs $900.  Is that crazy or what???)  I am still going to do it, but f*ck.  That is insane.  I’d prefer to buy a really nice Coach or Kate Spade purse and a Starbucks gift card!)

 

So what does everyone think?  Any magic words of wisdom to help me decide????  I am supposed to go in January 2^nd and schedule out my treatment so I really need to decide by then.

I also wanted to just say that much to my surprise Christmas this year was great.  Maybe it was the weather.  Maybe it was that Tash slept in. I don’t really know, but Chris and I spent the morning creating a table of pros and cons about my treatment path options  (as outlined above) and then the day was like a really cool, fun Christmas and the girls were great.  Because we had failed to make any plans, my parents bought everything for Christmas dinner, brought it over to our house and cooked for us.  It made it feel like a normal holiday and was really generous.  I was so glad because on Christmas Eve, I was feeling so melancholy and bitter, holding back tears all day as I had free time from work to think about the year ahead which by all accounts is going to suck ass.  It was a serious downer of a day.  I mean I am like the holiday queen social coordinator for my family and this year I was like, yah, I don’t really care.  We had no plan for Christmas eve dinner, no plan for Christmas day, I had never felt less merry about Christmas and thought this was going to be the worst Christmas ever.  I am so glad I was wrong.

Thanks again to everyone for reading and for all the calls, IMs, emails, texts checking in on me.  I sincerely appreciate all the love.

Sherri

 

 

 

 

Random Crap

December 20, 2013

This week has been really hard because of Natasha drama and overwhelming amounts of medical care coordination.

 I don’t know what is going on with Tash,  if she senses that something is amiss, but she is insane and angry and whiny and the past couple days have provided ample evidence of that.  She has started throwing things, and screaming, and even hit us a couple of times, all new behaviors we haven’t seen before, and so the time we get to spend with her has mostly been spent disciplining her, threatening to give stuff to goodwill when she throws it, and just generally not enjoying being with her. 

While Karina is not anywhere near the extreme that Tasha is, the sibling refereeing is really getting to me too.  Wednesday, from the second we got home from gymnastics at around 6:45 PM, both girls were just wailing for me, competing to have me hold them, to touch me, and were grabbing at me around the house like little leeches until I literally plugged my ears and yelled at them that I needed to get water and that I was a person and had my owns needs too.  So in essence I did what every parenting guide advises you not to do, and had a tantrum as a result of their tantrums.  And then I ran away to the grocery store for a few minutes of alone time and peace and quiet.  But the whole time I was there, I was like f*ck.  How am I going to do this?  Are my kids going to leave me alone if I’m barfing in the toilet after chemo or are they still going to want to be touching me and in the bathroom with me bc if they are I am going to lose my mind…Then I feel guilty for not being all like, oh my precious babies, I want to enjoy every second.  Ugh.  I might actually go clinically insane. 

Yesterday (Thursday) was also super stressful because I got like eight different calls from Kaiser about various appointments and referrals and we had a problem with the plastics appointment where they thought they couldn’t schedule me until the 13^th which would mean I couldn’t even decide treatment until after then and I literally told the woman on the phone WELL I CAN’T RISK DYING BC I CAN’T GET IN TO SEE YOUR DOCTOR.  And then I signed up at City of Hope to become a patient there.  All in a matter of like 3 minutes.  I guess fear and lack of control are strong motivators.  Chris ended up calling Kaiser plastics back and we were able to get an appointment on Monday, but dealing with that with both kids at home and trying not to terrify them while I am terrified and stressed out.  Well. Like I said before it has been a shitty few days this week.

I also got a call from the surgeon’s office yesterday and have to go in for more ultra sounds on both boobs and so then I am like WHY? DID YOU DETECT SOMETHING ON THE OTHER SIDE IN THE CLINIC REVIEW?  She said no, that it is normal practice, but I can’t help but fear the worst.  And really everything I say about this is said in ALL CAPS bc it all feels scary and urgent and like a precursor to worse news.  SO I TALK LIKE THIS NOW. Ugh! Ugh! Ugh!!

So today is my last day at work before Cisco shuts down for two weeks, but for me it may be even longer.  That is also weird.  I am not sure if/when I’ll be back!  I will also be spending a good portion of what I thought was going to be jolly holiday shutdown time with the girls at the plethora of appointments I have.  And I know – eyes on the prize.  I want to live and so all this short term crap should be of no consequence.  But it is really disappointing and stressful. As I have mentioned and complained about at length.

A few funny/good things have happened too and so I should share those:

1.       I realized that I can turn anything into a reason to shop when I found myself perusing and favoriting cancer shirts and cancer caps on Etsy this past week.  At least there is some good stuff out there. 

2.       I am also committing to myself that while I am on disability if I am not a total wreck, I am going to go for regular manis and pedis at that green salon in Manhattan Beach.  I have never been, I get manis and pedis like once  a year, except now I am like why the eff not since the rest of my body is going to be in shit shape and I won’t have hair.  Something needs to look pretty!

3.       I may also buy some funky wigs and try out different hair colors and styles – although I hear wigs are expensive and assume insurance only covers one.

4.       I checked into my FSA and I can actually increase my contribution until December 31^st and so I am not so worried about the financial implications of treatment.

5.       When I told a coworker about the diagnosis, she didn’t even blink before saying “You’ve survived at Cisco for 6 years, you can survive anything.”  Cisco is a great place to work, but also really demanding so I thought that was funny.

6.       My friend Adam bought one of those little cards in support of cancer at a barber in Torrance (I may be getting those details wrong) and listed “BlissBeatsCancer” for the display.  I thought that was cool.

7.       My sister is encouraging me to take this as an opportunity to get the perfect boob(s) and tummy tuck.  Who knows, maybe that will be possible and I will come out of this even hotter than going in.  (I’m joking when I say hot…)

8.       I used my diagnosis to get an Amazon discount this week.  I really want a kindle, and I had received a one-day $50 off coupon last week, but I just couldn’t make the purchasing decision because I was all effed up in the head.  When I decided definitively that I wanted one, I contacted their customer service desk and explained that I had been diagnosed with breast cancer which delayed my purchasing decision but that I wanted a kindle to get me through chemotherapy, and so they gave me a $20 credit.  It’s not the $50 I wanted, but it’s something.

I think that is all the crazy randomness in my head right now.

Thanks for listening.

Sherri

Update after the surgical consult

December 17, 2013

Many many thanks to everyone for the calls, texts, emails, IMs and virtual hugs today.  I appreciated each and every one. 

As you know, we had our surgical consult this morning.  Really nothing new to report, although the surgeon is pretty funny. She reminds me of Sandra Bernhard and Chris said she would’ve made a really great ER character.  She did her undergrad at Berkeley (Go Bears) and  trained at the City of Hope.  And she was just normal, like I would want to hang out with her and be her friend.  She is of course smart and specialized too.  So, overall a good first experience.

But, we have no real new news.  We basically can’t make a decision until we get the breast cancer gene test results back which should be soon, like within the week we hope.  If that comes back positive, then it basically means a double mastectomy and potentially a hysterectomy.  So there is no point in starting chemo to shrink down a tumor that is going to be removed anyway, and there is no reason to do a lumpectomy only to have to turn around and do a mastectomy.  So, we are still waiting.  And for the love of god, I hope the test doesn’t come back positive!

If it comes back negative then I have the same options that were outlined before – Mastectomy plus chemotherapy, lumpectomy plus chemotherapy plus radiation or chemotherapy plus lumpectomy plus radiation.  They all suck.  And they all require chemo and loss of hair and some portion of or a whole body part being removed.  The surgeon said it is going to be hell, but I’ll get through it and I will be able to love and live with my girls as a result.  But she was clear about it being hell.   I hate 2014 already.

They may also bring me in to do an MRI or another biopsy.  Tomorrow my sample gets reviewed and discussed by the overall breast clinic and if there are any concerns or findings then they may call me in for other tests.  So, we are waiting for that and for the breast cancer gene test back.

I had also posted for people who know anything about cancer that my HER2 test came back equivocal and so they had to re-test.  In the more sophisticated test it came back again as equivocal so we have to talk about that with the oncologist to understand the implications of foregoing the HER2+ therapy…the surgeon doesn’t really know what it means.

So over the next two weeks, I will have six additional doctor’s appointments to get through before we determine the treatment path:

·         one with an oncologist to talk about chemotherapy and radiation

·         two with plastic surgeons to talk about reconstruction

·         one with a counselor to talk about coping with this crappy situation

·          one with the geneticist to talk about the cancer gene results

·         and a follow-up with the surgeon on January 2^nd to determine the actual treatment path

A lot to do still before we decide the treatment path.  It is overwhelming.  And it’s weird.  But the good news I will probably not start treatment until after the New Year, which could also be bad news bc the ANXIETY is probably doing me more harm than the cancer.  But truly, I think it will be nice to have the holidays with the girls before entering into hell 2014.

I think that’s all I have to share today.  A couple of my friends who have preceded me as cancer survivors told me to expect this awful journey to have a secondary outcome which is that I will be changed for the better, will see how much good there is in people, will be more inspired than ever to help people/other women, etc., which I think I have written about before.  One friend even mentioned that perhaps the MPH I got almost 10 years will finally be put to use, and maybe my writing too.  I hope they are right and I hope I end up experiencing that bc I am just super anxious and bitter and angry right now, not so much of the good is presenting itself…yet.  But the reason I bring that up is because I was touched at how many people remembered that today was the consult and proactively reached out to send me positive wishes and notes.  That was unexpected and again sincerely appreciated.

Hope you are all having a good week.

Thanks for reading.

Sherri

Having cancer is making me bipolar

December 11, 2013

I’m starting to feel like having cancer is like being bipolar.  My mood changes a lot during the day and is set off regularly by random events.  I know I have cancer, but I feel good - healthy and strong and energetic.  I’m having great workouts with my trainer.  I’m eating healthy.  I’m playing with the kids.  I feel like the same old me, but I know that there is an expiration date to all of that and so always in the back of my head, there is a lingering sort of dread or foreboding .  I also have interactions with the people who “know” in my life and the people who “don’t know” and with both groups it kind of feels like I have to fake being normal.  With the people who know it’s again like I feel really good and I don’t only want to talk about cancer but it is kind if the big thing going on now and with the people who don’t know I feel like I am hiding this big secret.  So whatever I am doing during the day, and regardless of who I am doing it with, it’s like there is a bit of a struggle between the regular normal me and the cancer me or scared me or whatever.  It’s weird and I don’t think I am explaining it very well.

I would also like to add that diagnosing someone with cancer and then making them wait 15 days before they can do ANYTHING about it is the absolute worst  form of hell.  The doctor who diagnosed me told me to expect this, but honest to goodness, every single pain or bump or movement in my body I am like OMG it’s the cancer spreading.  Or like drinking my Starbucks I start to wonder about their cups – are they BPA free, did drinking Starbucks regularly cause my cancer.  Drinking wine at dinner last night, I texted Chris that after I ordered the glass I was like oh shit, I shouldn’t drink this, there is a connection between wine and breast cancer.  But the people I was with at dinner don’t know, and another guy at the table ordered the same wine so he knew it wasn’t bad, and so I was like damn, I’ll drink it, but please please please don’t make the cancer worse!

Anyway, I intended to write about the bipolar nature of my days by writing about my trip to San Jose and the various ups and downs in one 24 hour period.

So Tuesday night when I went to bed, I reminded Natasha that I was not going to be home when she woke up because I was traveling to San Jose for work.  I told her I would miss her.  She lost her mind, started wailing that she didn’t want me to go and she was going to miss me and was there any way I could cancel my trip.  More wailing until she fell asleep.  Then all night she had night terrors, like every hour or two she was screaming at the top of her lungs and flailing about in bed.  OHMYGOD.  Talk about guilt.  I am leaving for one night for the love of god.  I suspect she knows something is up, because this is not usual behavior for her.  Anyway, so when I wake up Wednesday morning at 4:45 (!!!), I am already feeling sensitive about leaving her for the night and my mind gets away from me and I start panicking and feeling really badly about the time I am going to have to take away for treatment and also how I might be too tired to really be there for her.  God, I hope that’s not the case.  I love that girl and I feel like she really needs ME.  Karina on the other hand, while I know she needs me, she is just happy with whomever and I know she won’t miss my presence like Natasha will.  Anyway, morning started with that guilt and sensitivity which perhaps set the path for the rest of the day.

I packed up the car and drove to the airport for my flight, no traffic, great drive, great music, but, as I am parking, Katy Perry’s Roar comes on.  I LOVE that song.  But of course I have seen the versions of the children’s hospital ward lip synching to the song, and the version of the terminal teen singing that song, and so as I park at LAX, singing at the top of my lungs, I just start totally crying.  And I don’t have time for that because I never really get to the airport super early and so I have to get inside to get on my flight.  I take a few breaths, look myself in the mirror and will myself to get it together. 

Walk through the airport, make friends with my fellow travelers in line, and then make the mistake of reading the Susan Love breast book on the flight to San Jose.  Talk about depressing.  I am mostly interested in risk factors.  I know I need to get over myself, but I really want to know WHY I got cancer and what I can do to minimize further risk…but I really don’t have any of the risk factors.  Maybe the wine drinking, but I don’t drink a glass a day, and then I have already written about everything else that I have done right that should have prevented me from getting cancer.  So I keep reading looking for some new enlightening information and land on this:  70% of breast cancer patients have none of the classical risk factors in their background.  Awesome.  Reconfirmation that breast cancer in a lot of ways is random, but also that there is an environmental risk.  So I start thinking about everything again – living in Los Angeles, living close to a refinery, drinking out of Starbucks cups, eating the prepackaged meals from Trader Joes…My mind can keep going down this path for eternity, but basically I am on the plane panicking about the CAUSE again.  So I start scanning through other parts of the book to get my mind off that totally unproductive spiral of doom and the chapters are just making me feel worse and worse – there is even a chapter on living with the recurrence of cancer.  And at that point I am like F*Ck this.  I need to get through THIS before I start thinking about getting it again!!!  And then I just start crying on the plane. Not sobbing, but just crying enough where I have sniffles and am shaking a little and if anyone paid the slightest attention they would see I am crying.  Thankfully there are only like 12 people on my flight and so I am spared the public humiliation, but again I have to talk myself back to sanity and calm the heck down before we land.

I get off the plane and then just sort of get into work mode and the rest of the day was fantastic.  I spent the day with one of the teams I support, and then attended the HR Holiday event and got to meet a bunch of people who I have worked with for years but never met in person, and then we had a team building event at the Christmas in the Park in San Jose and had dinner at Mortons’s.  We were out til 11:00 and during that entire period, like 8 am – 11 PM, I really didn’t even think about cancer (with the exception of the few minutes explained below).  Thank goodness for work and great work colleagues. 

Before flying up, I had told one of the guys on our team that I had been diagnosed bc I was not sure I was going to make it to the offsite, so walking to dinner he started asking me about treatment.  We were with a whole team of people, and so another work friend was close enough by to hear the conversation and so I told him, and he told me that another Cisco coworker, an incredible, driven, smart woman who I have worked with for 6 years who is probably the same age as me was also diagnosed last week.  Again, F*CK cancer.  Stupid piece of crap dregs of the earth cancer.  I need to reach out to this other woman so we can form a beat the shit out of stupid cancer alliance.  But damn, WHY? 

After dinner, I head back to the hotel and start writing this blog and then I am just exhausted and fall asleep before finishing it.  Again, win for me, bc I slept great and had no cancer panic.   Today is a new day and so far so good, but I suspect this struggle with moods may be an ongoing thing so apologies in advance.

I also want to thank EVERYONE for the kind messages, gifts, flowers, invitations, offers to help, stories of survivors, laughs, perspective, and encouragement.  Every single person who I have told has been incredible, like they each had a unique “how to respond to a cancer diagnosis” guide that was just perfect and touching for my relationship with that specific person.   I really appreciate every single contact and will continue to keep you all posted as we learn more about treatment path and timing.  I am sure we are going to need help especially with the girls, so thank you for the may offers for playdates and babysitting.  I know we will be taking you up on those.

Here’s to hoping today and the days moving forward are less filled with tears and mood swings and more filled with healing and laughter.

Thanks for reading.

Sherri

Worrying about losing my hair and Kaiser

December 6, 2014

I woke up this morning with churning anxious stomach syndrome again – around 4:15 - worried about losing my hair and about being a Kaiser member and couldn’t get myself out of that worry spiral!  I may need to take some sort of meditation class to get me through this…

When we left the diagnosis appt on Monday, the doctor said that I would either have surgery first or chemo first and for some reason the chemo freaks me out more than the surgery…maybe because chemo could start BEFORE Christmas (CRAZY!!) while surgery would be in January, maybe bc chemo and throwing up and a bald head are the images I get whenever I think of cancer based on my experience coming only out of movies and TV shows.  But, weird anyway that I think I am more worried about losing my hair than I am about losing my boob.  Maybe  it’s bc not having any hair or eyebrows is a clear indication of someone going through cancer treatment and I really, really dislike when people have access to information about me that I did not personally share with them.  I had the same issue with being pregnant.  I always hated when I really started to show, bc then when I walked into a room it felt like the first thing people would think is oh, look at the PREGNANT woman.  I found that to be so irritating and intrusive for some reason.  They would want to touch me and assume some intimacy bc they were also a parent and being pregnant became THE thing about me.  Maybe something is wrong with me, but I spent a lot of time worrying about and being irritated by that when I was pregnant.  I wanted to be mean to people and say, I am also really smart and a good writer and awesome at my job, do you want to know more about that?  I might be crazy.  Maybe the crazy caused the cancer, you think?  Funny enough, now that I have kids, they are pretty much all I talk about, so maybe I am also a hypocrite.

With the hair loss, it’s going to be like, oh, that woman HAS CANCER.  Wherever I go, whoever I see, that is going to be the first thing they see, and I worry that people will either avert their eyes and become uncomfortable or again they will assume some sort of bond or intimacy with me based on that ONE thing about me that is the most obvious upon my entering a room.  I hate that.  I worry that I’m not going to want to ever leave the house, because even with neighbors, like if I haven’t told them, they will be like, holy shit, SHERRI HAS CANCER.  Like everyone gets to know even if I don’t want them to and that becomes THE THING they think about and talk about with me.

Of course I’m also concerned about how I’m going to look.  I mean, since having kids and working from home full-time, it’s not like I put much into how I look anyway, but hairless is at a completely different level than just careless and sloppy.  Hairless trumps careless.  And eyebrow-less.  Well, I may have to start wearing makeup for the first time since high school.  We’ll see.

Now on the Kaiser thing.  I have been a Kaiser member for a long time – 10 years, maybe longer.  And they have been great.  I had both my kids at the Harbor City Kaiser which is like 4 blocks from my house.  I love my doctor.  I loved my midwife.  The hospital staff was mostly awesome.  And the treatment we have received has been wonderful, including the assessments and various appointments for Natasha when we were worried something more than just “difficult personality” was going on with her.

But everyone always says, Kaiser is fine UNTIL YOU HAVE A PROBLEM.  Uh-oh. 

So I am thinking I will pay cash for a second opinion once I get all my test results back and my recommended treatment regiment, but do I need to consider paying cash and going out of network for everything? How much might that cost?  I would guess a lot.  Sadly, open enrollment just closed in mid-November and getting diagnosed with a big, scary disease doesn’t count as a life changing event so I have no option to change insurance coverage or increase my FSA.

Does anyone have experience with Kaiser and cancer?  Should I be concerned?

I also got tested for the breast cancer gene on Tuesday.  That is really stressful.  We learned way more than I ever want to know from the geneticist about what it means if you test positive and it is not good.  They don’t think I will, but still, one more thing to worry about and one more awful possibility.  We should get those results back within 2 weeks so right before we see the surgeon, I think.  So for those of you who know anything about breast cancer, I am ER+, PR+ and HER2 unknown so that is still being tested, and the breast cancer gene test is still out.  Next appt will either be with the geneticist if the breast cancer gene results comes back or the surgeon on the 17^th followed by appt with the oncologist.   Treatment will start late this month or in early January.  Merry Christmas and happy 41^st birthday to me.

On a more positive note, we had a truly fantastic day with the girls at Disneyland yesterday.  We just took it easy, played, watched the musical shows, and spent the entire day there until it closed.  Even caught the Water and Light show (I am sure there is a better name for it) at California Adventure which they changed to be all about Frozen for Christmas and it was really cute.  I am so glad we had already planned to take the day off because Tash’ school is closed for parent-teacher conferences.  It was great. J

We haven’t told Tash I’m sick yet.  I don’t even want to think about that or how we’re going to tell her.  That is going to suck.  When she had to get stitches in her eyebrow, I remember telling her how funny it was that she was going to be in a papoose like a baby, and we were laughing.  But god, then when they had to put her in it and she was screaming and trying to get out, it wasn’t funny at all and I felt like a totally horrible lying mom.  I am going to have to walk a fine line between just the direct truth and painting the picture too rosy.  Would love any thoughts or resources related to the horrid conversation and explaining the loss of hair and other body parts in a way where she is not going to be afraid about me, but also not afraid for when she gets older.  Ugh.  So many icky things to deal with in this process, and it’s just starting.  I hate it.

Still, no more tears since Tuesday so I call that a win!

Thanks for reading.

Sherri

I finally stopped crying

December 4, 2014

I got some good sleep last night, thank goodness.  And I stopped crying hysterically about mid-day yesterday so today already feels like a better day.  I am not sure how I stopped crying.  The supportive messages from friends and family helped, especially some notes from a good friend of mine who went through a horrible fight with cancer several years ago who described this experience like having an unwanted guest come visit your home.  You let the guest in, but almost immediately start telling him he isn’t welcome and laying out your plan to get him out, making it clear that he will never, ever return.  That resonated with me because I definitely have some feisty in me and I am really, really competitive.  When I look at this in terms of either cancer wins or I do, that puts me in a good competitive place to not even consider losing.  I keep chanting in my head, you picked the wrong host you stupid fucker.  Be prepared to get the eff out.  I also watched a bunch of You Tube clips of Aziz Ansari and Jimmy Fallon.  Thank goodness for comedy.

Unfortunately, I wake up to sheer panic.  It has only been two days, so maybe this will pass, but I start to stir and I am nice and cozy and then when I start to become conscious I am like oh jesus, I HAVE CANCER.  My heart starts beating really, really fast, I get this horrible anxious ball of nausea in my stomach, and I feel like I can’t breathe.   I try to go back to sleep so I can avoid those feelings, but am not successful.  I know its anxiety because I had similar experiences after having each girl – where I was like what the hell was the universe thinking making me a mom.  I have no idea what the hell I’ m doing!!  This morning I thought about getting up to write this all down, a couple of other friends suggested a blog, and I thought of the name Bliss Beats Cancer.  It got me out of bed.  Baby Steps, I guess.

The other thing that is really stressing me out is that I of course want to know WHY and HOW I got cancer.  That was one of my first questions to the doctor – what did I do to cause this?  I have never smoked, I drink very little, I exercise and have always exercised, including walking within a week of each daughter being born, I have some weight to lose but I’m not obese, breast cancer doesn’t run in my family, I’m young by breast cancer standards…I asked her about having my laptop too close to my chest, living too close to the Port of Los Angeles and the refinery, eating too much sugar or drinking too many Starbucks lattes.  She explained that breast cancer is one of those things that is not causal, and while human nature is that we like things to be cause and effect, it isn’t always.  I don’t know if I fully believe her, because I need there to be some reason to this so I can prevent it from happening again.  And just to be on the safe side, I moved my laptop further away on my desk, bought green tea from trader Joes, and have given up sugar.  (well for two days, we’ll see how long that lasts.) (oh and BTW, green tea tastes like ass.  Who drinks this voluntarily?)

What else is on my mind today?  Foremost is the question of how I am doing to get through the next 13 days until we get the surgical consult.  Every pain or ache I feel in my body, I’m certain it’s the cancer spreading, fast, and not doing something NOW, I’m certain that’s reducing my chances of survival.  Friends are encouraging me to enjoy the last few weeks of life being “normal”, to try and get into the holidays, and I totally appreciate the intent of those wishes, but life is already not normal. I will do my best to enjoy the holidays but it’s a challenge when in the back of mind I wonder if this is going to be my last Christmas and New Year.  Also, I am thinking a lot about the perception everyone has of me being strong.  I suppose in some ways I’m strong, but I can’t think of a single woman in my network of friends and family who isn’t strong.  Who I wouldn’t describe as amazing in some way.   And so why do some women not survive breast cancer?  Every woman who goes through this is someone’s daughter, someone’s best friend, likely a wife and mom…and every woman will have a village behind her praying and helping and researching and praying some more for that woman’s survival.  But there is not 100% survival, even just in the U.S.  Why?  Why isn’t there?  Maybe I will spend some time researching that today.  More likely I will do some work (thank goodness for work right now, what an incredible gift to have something meaningful to distract me for at least part of the day) Probably I will watch more comedy videos.  And sadly, I will probably shed some more tears.  But hopefully there will be less of those today than yesterday and each day will just get better.

I think that’s it for this morning.

Thanks for reading.

Sherri

I got diagnosed with cancer on Monday

December 2, 2014 – WARNING ADULT CONTENT/LANGUAGE ENCLOSED

I was diagnosed with breast cancer this morning.  My first thought was FUCK!  Followed by, I don’t want my girls growing up without a mom!!!  It was not a good moment.

After those initial minutes of panic, I actually started thinking about that Steve Jobs quote about dying:

Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.

No one wants to die. Even people who want to go to heaven don't want to die to get there. And yet, death is the destination we all share. No one has ever escaped it, and that is how it should be, because death is very likely the single best invention of life. It's life's change agent. It clears out the old to make way for the new.”

I haven’t been super happy of late.  Having kids altered my DNA in a way I did not expect and so the stress and long hours and demands of corporate America have become less and less acceptable.  I have been thinking about starting my own business, so I can manage my own hours, and ultimately have dreamed about working only 5-6 hours a day so that I can enjoy as much time as possible with the girls now and for however long they want/need me.  I’ve thought about doing party planning, contracting for a franchise multi-grain bakery, consulting on employment branding, but nothing has really seemed like the RIGHT thing and so I have been sort of stuck.  I suspect this diagnosis is either going to kick things into gear for me to make a change or actually re-commit me to corporate America because of the benefits and stability…who know, but I hope I am able to go through this with the perspective of it being an opportunity to focus on what really matters…which is life, and family, and happiness.

I also looked back at what I wrote on my 40^th birthday – I think that I need more fun and social in my life now and into the next 40 years, hopefully.  I would really like to write more and aspire to get paid to write, I want to have more travel adventures, even if they have to be domestic travels, I want to spend more time with my friends who I have all but lost touch with (other than Facebook) since having kids, and in general I want to be more open to new experiences and opportunities. I think being fearless in my early years is what earned me a lot of my very favorite moments, and I haven’t been fearless in a while. So, my birthday wish to myself is not to be fearless (bc I have kids, I can’t be totally reckless) but to have less fear about everything – parenting shortcomings, my career, the future in general and to just go for some of hopes and aspirations even if I fall flat on my face.

Do you know how many of those things I accomplished this year?  None, zero, zip, nada.  Not a damn one.  Did I write more? No.  Reconnect with friends? No.  Become less fearful?  No!  The universe is sending me a message to get it together, get to a better place and refocus on what matters.  At least I hope that’s what it is.

But of course I’m scared.  I don’t want to die, but I also don’t want to be bitter, I can totally see myself getting bitter and overwhelmed and angry through this and it scares me.   And I don’t want to be too tired to play with the girls, I especially don’t want to miss  a single second I have with them now, and I don’t want to scar them for life for having gone through this with me.   But poor things.  Did you know that a woman’s risk of breast cancer approximately doubles if she has a first-degree relative (mother, sister, daughter) who has been diagnosed with breast cancer.  So regardless, I am already guilty of putting them into that horrible statistic.  Stupid fucking cancer.  I hate you and we have only just met.

I need more fun and social in my life now and into the next 40 years, hopefully. It also made me think about what I would hope to post about in the future, things I haven’t done that I would like to, and a few things came to mind. I would really like to write more and aspire to get paid to write, I want to have more travel adventures, even if they have to be domestic travels, I want to spend more time with my friends who I have all but lost touch with (other than Facebook) since having kids, and in general I want to be more open to new experiences and opportunities. I think being fearless in my early years is what earned me a lot of my very favorite moments, and I haven’t been fearless in a while. So, my birthday wish to myself is not to be fearless (bc I have kids, I can’t be totally reckless) but to have less fear about everything – parenting shortcomings, my career, the future in general and to just go for some of hopes and aspirations even if I fall flat on my face. I need more fun and social in my life now and into the next 40 years, hopefully. It also made me think about what I would hope to post about in the future, things I haven’t done that I would like to, and a few things came to mind. I would really like to write more and aspire to get paid to write, I want to have more travel adventures, even if they have to be domestic travels, I want to spend more time with my friends who I have all but lost touch with (other than Facebook) since having kids, and in general I want to be more open to new experiences and opportunities. I think being fearless in my early years is what earned me a lot of my very favorite moments, and I haven’t been fearless in a while. So, my birthday wish to myself is not to be fearless (bc I have kids, I can’t be totally reckless) but to have less fear about everything – parenting shortcomings, my career, the future in general and to just go for some of hopes and aspirations even if I fall flat on my face.We’ll find out the course of action when we go back to consult with the surgeon on December 17^th.    It sounds like there will be surgery, definitely, and then chemo and radiation.  My sister was kind enough to tell me she thinks I look cute with short hair, and so perhaps I will look incredible with no hair.  I doubt it.  (hear the bitter creeping in?)  And really I don’t care about anything except not dying on my kids.   We will let you know when we learn more about what will come next, but the doctor said I should plan on a treatment plan that will span an entire year.   I had no idea.  That is such a long time.  I was really hoping to focus on our 10-year anniversary and a trip to Hawaii next year.  Maybe I will have such an easy time with treatment that I can still do that.  I guess I can hope for that.

In closing, and I don’t want to be a stupid cliché, but honest to goodness, life is short and not guaranteed and so whatever else is going on this holiday season, I would encourage you to make time for the people you love the most.  That is what I am going to be doing this Christmas.

Thanks for listening.

Sherri