Showing posts with label Cancer. Show all posts
Showing posts with label Cancer. Show all posts

Wednesday, March 30, 2022

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.




Monday, March 28, 2022

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.





Wednesday, March 16, 2022

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