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