Surgical Consult #2

 This post will be more messy than usual.  Just want to get out some of the facts/nuts/bolts of the latest.

While I very much appreciate the follow up of staff re: the errors in my medical records, enough issues have arisen that it was clearly time to move on to a different practitioner.  I have a new consult scheduled for next week.

I also had a genetic counseling appointment today and blood drawn for the testing.

Did you know there is a law that your health insurance cannot discriminate against you based on your genetic testing?  Life and long term care insurance can, but not health.

Lots of stress and ups and downs, but I feel really good about where I am now.

I'm uncomfortable about pushing out the start of treatment, but I am far more uncomfortable rushing into treatment with a practitioner with whom I did not fit and without genetic information that could potentially affect my treatment now and further choices down the road.

Errors

The mental work of being a cancer patient is exhausting and overwhelming.  I'm tired before I've even started my physical treatments!  Managing emotions is almost a full time job.  Then there's the matter of research, understanding my condition, my options.  And balancing all of this with regular daily life.  And trying not to be completely self-absorbed. 😉  It's hard, then, when I have to add to this list great vigilance when it comes to reviewing my medical record for this adventure and making sure everything is accurate.  I had to do some patient advocacy for myself today.  Excerpts from my email below:

*******************************************************

I am a newly diagnosed breast cancer patient. ... I received an email notification that my visit notes were available in electronic medical record. ... I discovered many errors. ...

I am reaching out to you ...

• to document my concerns;
• to become informed of the process for correcting errors in the record;
• to hopefully receive some reassurance that these errors in no way represent the quality of care I can expect going forward.

I printed out the notes ...and notated each of the errors.  ...pdf with my handwritten corrections is attached here.  ...specific concerns...:

1. The number of errors in my notes.
2. The location of my cancer is listed in the "Impression/Plan" section incorrectly ..
3. HER2 status is incorrect.  
4. The notes claim that certain topics were discussed in my consult when they were never mentioned.  At all.  
5. ...

All of these concerns are documented in the attached file.

... It is difficult to feel safe and have confidence in my care given these circumstances.  

 I look forward to working with you to follow up on my questions and concerns.  Thank you for all you to do help patients be heard, be safe, and be as well and healthy as possible.

******************************************************

Thankfully, I received the first response within 15 minutes of my email and a second response about 20 minutes after that.  Here's hoping that things smooth out, at least in these kinds of things.  

As with all things on this adventure, I choose hope and look forward to the future.

The breast opportunity

You are within spitting distance of 50.  You’re finally relatively comfortable with your body/appearance.  Of course, that’s when you get the “opportunity” to change something.

You are ill prepared for the opportunity to get fancy new breasts.

I don’t want to be miss an “opportunity” or make the “wrong” decision.  Scare quotes are intentional.  Is this really an opportunity?  Can there be a wrong decision?  I don’t have answers for any of this.

As will surprise no one, I was well-prepared for my initial surgical consult.  Except for one thing.  The mastectomy option.  Now, I knew that a mastectomy would be an option, but there were nuances to it that I did not expect.  Going into the appointment, I laid things out clearly in my mind. I discussed them with Alfred.  There were a couple of little, niggling things (pun almost intended, as will be clear shortly) that were not quite settled, but I felt that lumpectomy was the way to go.  My thought was: I will do whatever the professionals think will give me the best possible outcome (understanding, of course, that there are no guarantees).  If mastectomy and lumpectomy offer the same outcome, then I will choose lumpectomy, my thought process being that simple and least-invasive is always the best first option.  

So, after the usual initial medical intake (hello, high blood pressure for the first time in my life), I met the surgeon, met the resident, was given privacy to disrobe, and then had my exam.  Afterwards, we met in a consultation room–surgeon, resident, an unintroduced man in scrubs (nurse? student?), Alfred, and me.  As we talked through a few things, we came to the choices:  “we can remove the mass and some surrounding tissue to get clean edges.  Given the size or your breasts (there’s that little niggling question 😄), a good deal of tissue will be removed, and there will be some size discrepancy between your breasts.  The other option is a mastectomy to remove the whole breast, then plastic surgery to reconstruct the mastectomy area and add an implant to the other breast so you will be even.  So, if you’ve ever wanted to change your breasts, now’s the time!”

😲😳

I can’t remember exactly what I said, but I think it was something like: Whoa.  Wow.  Really.  I can do that???

The surgeon definitely responded with: well, you have the cancer card to play, so yes!

This is what I was ill-prepared for.  Ill-prepared, unsettled, unsure, freaked out.  Still am a little of all of that, but I think I’ve finally settled into my decision solidly, and I pray it’s the right one.  That settling in involved some 3am googling.  I watched an 11-minute video on breast reconstruction post-mastectomy.  I reviewed the differences in recovery time between lumpectomy and mastectomy+reconstruction.  I looked up “bras for asymmetrical breasts.”  That was all the 3am googling (which Ruthie helped with).  That does not include all the consideration that took place before and after.

I have worries, as we all do, especially us folks who have to make decisions of this nature.  I just want to look “normal” as I go about my daily life, post surgery/treatment.  

If there is any time in my life that it can be all about me, it’s when I have cancer.  I have to make the decision that is best for me, but best is not always simple or clear.  And because of who I am, best for me still involves others.  

I believe that most of the time, any decision we make can be made right, even if a different decision lead us down a different path.  I guess what I’m saying is that it’s not about a right decision.  It’s about a decision... and peace.  Gosh, that’s revolutionary for me to say.  Isn’t it always about being right? Maybe not this time, if ever.  Lol!  For now, for this moment, it’s about figuring out what is best for me.

Spoiler alert: I chose the lumpectomy.

 

A break from our regularly scheduled posts...

I've got several other posts in the works, one of which I hope will go up this weekend, but it is still percolating.  In the meantime...

A quick note to thank you, to let you know that I am grateful for you and truly appreciate you reaching out.  You commented here.  You messaged me privately.  You commented on Facebook.  You mailed a card.  You gave me a hug.  You asked.  You read.  You listened.  

Words are inadequate in this case.  They cannot really let you know how much comfort and strength I derive from each of you letting me know you support and believe in me.  But, words are all I have, so thank you. 💗

Distress Thermometer?

Got a text message asking me to complete my online check in for tomorrow's consult appointment.  I thought I had already done everything.  I had completed the 8 page hard copy form.  I updated all the information in my online medical records.  I confirmed the appointment.  What else was there?  What other fresh hell awaited?  Could it be they just always sent a reminder text to complete check in, even if it was already done?

Well, there was one more little tidbit to complete.

I'm willing to bet most of us, or at least most of us who are of a certain age or who have interesting medical histories, are familiar with the pain scale.  I'm most familiar with the whole, "on a scale of 0-10, 10 being absolutely unbearable pain, what is your pain level currently?"  There are even pain scale faces:

Evidently, there is also a Distress Thermometer.

Who knew?  

The question posed to me: How much distress have you been experiencing over the past week, including today.

Well, let's see, I received a cancer diagnosis just over three weeks shy of my 49th birthday.  Today, I received my first medical bill (other than a copay) related to said-diagnosis.  My parents, both in their 80s, each have complex, unique, challenging health problems.  They live about 1,200 miles away, and I'm not in a position to be the fixer I usually am, for a variety of reasons, not limited to my recent cancer diagnosis.  I'm the mother of a teen-aged girl.  I'm living in what is still a global pandemic, watching WWIII potentially begin in Ukraine.  There are probably other things, but I think those are the highlights.

Anyone want to hazard a guess as to what I put down as my number on the Distress Thermometer?  For the record, Amelia hit the nail on the head.  Alfred did not. 😜

Punishing (disordered eating)

Before I dive into the post, I want to thank everyone who has commented here and reached out in other ways.  I so appreciate each of you.  Another medical appointment this week, and I hope to have a better idea of my next steps.  Will post more when I know more.  Now, onward!

I love food.  I love how it smells, how it tastes.  Far too often, food brings me too much joy.  Food is miraculous.  It is celebration.  Food is linked to almost every kind of milestone or gathering I can think of.  It is significant in many different faith communities.  It is communal.  It’s science; it’s art; it’s self-expression.  Food is emotional.  It is physical.  We each have unique food tastes and reactions.  I just love food!

I’ve worked really hard to create healthy attitudes towards food in our home.  It’s been a challenge, because we are a picky household.  There are two primary paths I’ve tried to follow:  #1-we eat when we are hungry.  This is to say, we don’t eat when we’re bored or sad or angry.  We don’t eat just because someone asks us to.  We try to listen to our bodies, and if our bodies say we need to eat, because we are feeling hunger, then we eat.  And that leads us to path #2: what food fulfils for us. 

Food is both fuel and fun.  Fun food does not always provide the best fuel, and food that fuels us is not always the most fun.  Because life is about moderation, we cannot and should not eliminate fun food (imo, unless unique health needs demand we do so), but we need fun food in moderation, and we need to responsibly focus on fuel food, to help run the engines of our bodies and our lives.

Since I read pretty broadly and am interested in all kinds of random things, it will surprise no one that I’ve read a bit about eating disorders.  Can’t remember what or why right now.  Bulima.  Binging/Purging.  Anorexia.  Eating disorders have their roots in a variety of things–societal/familial pressure, self-image/self-esteem issues.  It was striking to me, though, when I read that eating disorders can also be about the need to exert control.  Type-A personalities, over-achievers, competitive folks, those with or a tendency toward OCD, people who have experienced some kind of trauma or abuse–all of these have an additional risk of possible disordered eating.  When life feels out of control, when one feels like a failure, some turn to disordered eating.  

This was me for a few days this week, and it hit me that I was using food and eating to punish my body, punish myself, and exert some control in a situation where much agency has been wrested from me.  How dare my body betray me this way?!  I cannot be this vulnerable.  I must be in charge.  Let’s lean into that hunger, see how long I can go, see what I can deny myself and my body.  Let’s teach cancer and my body (which has never been on my side, really) a good lesson.  I’m going to deny myself and deny the cancer.  I’m still the boss! 

Don’t worry.  The rational side of my personality often wins out, and this will be one of those cases.  I took “food as fuel” very seriously when I was pregnant.  Food as fuel will never be more important than it will be in my cancer experience.  

So, I’ve given myself a good shake.  And had a lovely green smoothie for breakfast yesterday, black bean soup for lunch, and yeast waffles for dinner (hello Friday in Lent).  Today was ricotta toast, a piece of Teriyaki chicken breast with carrots and peppers and half a homemade whole wheat English muffin.  Dinner will be Alfred’s oven fried chicken.  See, back on track!  

All will be well.

An interesting read:

https://www.eatingdisorderhope.com/blog/illusion-control-development-eating-disorders

Diagnosis Beginnings

I’ve been doing a pilates program ( The Balanced Life) regularly since the end of October.  The last weekend of February, I felt a weird sensation near the left side of my chest wall and underarm area.  It just wasn’t right.  So I felt around, and sure enough, something was there.  Or was it?  Is that a rib?  It could be a rib.  Maybe it’s a rib.  Nope.  Not a rib.  So, I called Monday, 2/28 and had diagnostic testing scheduled for March 7.  

I had been through something like this before, for my 40th birthday.  I discovered a lump then, and my first mammogram was followed immediately by a needle/core biopsy.  That turned out to be a fibroadenoma, and given my history of uterine fibroids, this wasn’t terribly surprising.

The screening doctor thought this was probably the same thing.  I had a gut feeling that it wasn’t. 

March 7 involved mammogram, ultrasound, 2 core samples taken from the suspicious area, and an ice pack in my bra.  March 8 involved me parsing results in my electronic health record, then a call from the screening doc.  Invasive ductal carcinoma. And next steps begin.

It is hokey, and you may not believe it or believe I believe it, but I am beyond blessed.  *I* found the lump–3 months before my regular mammogram.  We have health insurance and can afford my treatment (though I do anticipate high costs and surprises, because, hey, America).  I am already surrounded by loved ones supporting me as I begin this journey.  I have complete faith that will continue to be the case, as more of you find out what is going on. Loved ones, you move and humble me.  Your love and care mystify and overwhelm me.  I will never, ever, be able to thank you enough.   God created me with a strong mind and a strong will (often to the chagrin of those around me).  I am well-equipped to go through this.  God is good.  All the time.

This is not to say that I don’t occasionally freak out.  I do.  I think all kinds of crazy things (see future posts, I'm sure). And sleep has been even more challenging than usual, but I am so very, very aware of how much worse things could be.

In the past, some have implied that I overshare when it comes to my “personal business.”  Well, buckle up folks, because I told (poor) Alfred that the way I’m going to face cancer is radical transparency (and a questionable sense of humor).  It feels right for me. I cannot carry the burden of silence (in anything, I suppose 😁). Most of my life, I’ve made sense of hardship by learning from it myself and using it to inform/educate others.  I’m posting now because I’m ready for it all to be out there.  Please, be comfortable talking to me about it.  Ask questions.  And if I need a break, I’ll tell you.   There is still a lot I don’t know in terms of my diagnosis, and answers to those questions, in addition to being cared for by what I hope will be a kick-ass heathcare team, will drive my treatment plan.  I’ll be learning a lot the next few months, and I’m taking you along for the ride with me.

If you’ve actually made it this far, thanks. :)  Pray if you pray.  Send good thoughts if that’s your thing.  But most importantly, care about other humans and live your life that way.  Be vigilant in your self-care.  Listen to yourself and your body.  Medical professionals are partners in your health, but you are in charge. <3 

/firstinstallment