Right Folder, Wrong Chart

June 1, 2017

As most of you know, I have multiple myeloma – a cancer of the plasma cells often called a bone marrow cancer.  I recently underwent an outpatient procedure called a stem cell collection which provides cells for a future stem cell transplant.  The nurses who perform this procedure take great care to ensure sterile techniques are followed throughout to prevent infections.  Thankfully, my nurse paid meticulous attention during the procedure and I tolerated the process without any signs of infection or complications.

Okay. All is well, right?  Not quite. Well, while such focused attention is being paid to the complex procedure sometimes it’s a “little thing” that gets overlooked.  What could that be?  Since the preparation for this procedure involves quite a few injections and my response to them, it’s necessary for the nurse to call with the results of my blood work to determine if I would need additional injections.  Upon checking the phone number listed on my chart within the folder she asked me if the last four digits of my phone number were 1234.  No. Next she asked me if my cell phone area code was 123.  No. Hmm. I was  listening pretty closely now. (Obviously, I’ve changed these numbers for privacy purposes, but you get where this is going.) Then she walked over to the desk to see whose chart was within my folder.  Apparently, not mine.  Although my name and date of birth was clearly marked outside the folder, the chart with another patient’s medical and personal information was within my folder. Oops!! The nurse quickly removed Jane Doe’s chart from my folder, located my chart and placed it where it needed to be: in my folder!   Where had my chart been?  Most likely within Jane Doe’s folder!  Would that error have been picked up and rectified later on, if checking my phone number was unnecessary?  Maybe. And, at what potential cost to Jane Doe and me.

What does all this amount to?  It’s just what I have been writing/saying all along:  Pay attention, please. Ask for what you need.  Become your own, best healthcare advocate. Most importantly, if for whatever reason you can’t advocate for yourself, please find someone who can be there with you at the doctor’s office or in the hospital who can listen, speak up and advocate for you.  It’s that important.  #whywaitReina #askforwhatyouneed #trustyourdoctorbutnotthatmuch #payattention #becomeyourownbesthealthcareadvocate #findanadvocateifyoucan’tadvocateforyourself

“If it doesn’t challenge you, it doesn’t change you.” Fred DeVito

May 5, 2017

You gotta love this quote.  While I was at a local farmer’s market with a friend I decided to give myself just a tiny little challenge at a vendor who was selling kimchi.  I’ve often heard how pungent it was and how awful it tastes.  Too spicy, too hot and too “different!”  Ah ha – too different.  Therein lies the real reason people don’t try something new – it’s too “different.”  But, wait. These were the opinions/perspectives of others.  Was I going to base my choice on the opinions of others?  How would I know if I liked something, if I didn’t try it myself? And so, I did take up the challenge. Just a tiny challenge, nonetheless, but even tiny challenges count! “If it doesn’t challenge you, it doesn’t change you.”  Okay.  Done. Not so bad.  Yes,  a little spicy, but not bad. Couldn’t be worse than the haggus and neeps (turnips, sheep intestines and porridge) I had in Scotland after our server saw me contemplating it on the menu and said: “Aw, go ahead, be a devil !” Couldn’t resist that challenge. Why? Simply because I knew I wouldn’t be back there for a long time and how would I know if I liked it/hated it, if I didn’t eat it myself. Down the hatch! Not my favorite, but very glad I tried it.  If it doesn’t challenge you……..

After surviving the food challenges (ha!), I moved on to a medical challenge at the behest of my husband. I was scheduled for more blood work after I’ve had more blood tests and infusions than I’d like to think about.  My husband suggested I ask my oncologist if I really needed one more blood test at this time.  Weren’t there plenty of recent results he could rely on for accuracy?  And, then – I heard what I had been hoping for – I didn’t need one more blood test right now. Yay and yay.  Saved myself a procedure by challenging my doc in a respectful way by asking for what I hoped I didn’t need.  And just maybe, the doc would reconsider whether one more blood test, etc. was truly necessary for the next patient who came along.  And maybe, one or two people after reading this would ask their doc a similar question that relates to their health.

“If there’s no challenge, there’s no change.”  Thank you, Mr. Fred DeVito.  #whywait #trustyourdoctorbutnotthatmuch  #askforwhatyouneed.

Leaping Without a Net (Trusting Yourself)

April 21, 2017

How do I make a major decision – how do any of us – a potentially life changing/life affirming yet incredibly scary decision?  A choice that has no guarantee of the outcome – a real biggie. For me it’s still all about coming to a place where I trust myself.  But, how do I get there and what criteria do I use to make an informed, educated decision and advocate for myself?

In my case, my decision is whether to have a stem cell transplant recommended by my oncologist.  Pretty major.  More than major.  Without going into great detail – the purpose of the transplant is to replace my bone marrow with healthier cells.  It’s a promising procedure, but not an assured one. So, do I take the leap? And, most importantly, how do I get to a place where I’m comfortable with my decision – that I trust myself.

Here’s my process:  First, I ask the doctor a ton of questions.  Is this necessary?  Is this the optimum treatment at the moment?  What about the risks/benefits, side effects?  What other options do I have?  And then, I ask me (as I’ve mentioned in other blogs) what are my personal goals of treatment?  What am I willing to do/withstand/tolerate in order to potentially have a longer, better quality of life?  That’s a question I will consider over and over again.

Next, I do my own research – read clinical papers, get a second opinion, talk with other healthcare professionals and folks who’ve been through the procedure and finally do some serious soul searching.  Finally, the answer comes:  My own answer.  Yes, it’s the right time and the right procedure and I TRUST ME.

Am I scared?  Absolutely.  Am I sure this is going to work?  No.  But, there is a moment when I know I need to give it a shot.  To take the leap.  So, I’m going to step into it and keep trusting I’ve made the best decision I can at the time.

This is my story.  Everyone’s story is different – a story unique to their lives. If you have a moment, please share your story, your process when  a “fork” shows up in your life.  Keep advocating.  Keep trusting yourself.  #trustyourself  #askforwhatyouneed #trustyourdoctorbutnotthatmuch





April 13, 2017

My girlfriend, Carolyn, is a creative and a do-it-yourself woman. She’s always working on something in her home or just for fun in someone else’s. I’ve seen her up on a ladder creating gorgeous faux painting, installing a new toilet in her powder room and watched as she created the most beautifully decorated Xmas tree. All the while that Carolyn is busy with her projects, she’s in her home alone.

Several weeks ago while she was up on a ladder “creating” she had an epiphany. “What if I fall in my home while I’m alone? There will be no one here to help me. They’ll only know I’ve fallen, banged my head and died when the neighbors detect a strange odor!”

She’s not ready for the “I’ve fallen and I can’t get up” button to wear on a chain around her neck, but there is something she can do to feel safer – keep her cell phone on her when she’s working around her home alone with tools, ladders, shovels, rakes inside or outside her home. Anyone working by themselves can stick their cell phone in their pocket, tuck it into her bra or waistband of her pants. In 2017 we would be hard pressed to find someone who doesn’t have a cell phone between the ages of 5-100! I’ve seen kids so little they’re still in strollers playing on their mom’s cell phone while she shops!

Young or old we all “speak” cell phone and carry them with us as if we were expecting a call from the president.  Best use to of that device would be to keep it on us whenever we’re working on a project and there’s no one else around.  Or, you can get that “I’ve fallen and I can’t get up” button.  Nah!  I don’t think so.

#whywaitThursday  #haveyourcellonyouwhenclimbingthatladder #Trustyourdoctorbutnotthatmuch  #askforwhatyouneed #DIYkeepyourphoneonyou

Accentuate the Positive

April 6, 2017

As a patient, positive support means everything.  I know it has to me.  Fortunately, many friends and family members provide the love and support I need to help me through the treatment.  Like all patients know going through it, treatment can be challenging, difficult, bumpy and just plain depressing.  When you’ve got family and friends there for you cheering you on it makes the journey far less arduous.

So, why then do people tell you the sad, dramatic and often scary stories of what has happened to someone else who has the same illness (or they think has the same illness!) as you do?  I don’t know why, but they do.  It seems these stories come to mind and before they’re aware of it, the story comes spewing out of their mouth.  Whether the story is true, false or like the old game telephone, by the time you hear it the facts of the story have changed so many times it doesn’t even resemble the original account.  If your Aunt Matilda brother’s uncle’s cousin (you get it) told you this story, you may want to consider the source and even more importantly, what impact the story is going to have on a patient.  As I’ve said before, patients have enough “stuff” and questions going on in their own heads without any additional scary stuff increasing the volume.

Here’s what happened to me. Many years ago while I was having a great time at a wedding a friend told me her husband bled to death from the very same illness I had!  Try to enjoy the wedding after that!  Thankfully, I’ve not had the same issue, but I can tell you that story has been hard to forget, but I have realized it is not my story.  Sadly, it belonged to the man who experienced it. But,once heard there it is.  I realize people don’t mean to frighten you or wish you ill.  They simply speak first – almost unconsciously – without grasping the impact their words have on patients.  Well, those words have a very long half-life and are not easily forgotten.

Instead, why not choose uplifting words or stories to support those who need to hear them.  Before telling those dramatic, worrisome stories to a patient, why not give some thought to how those words will be received. Words of love, support and oftentimes, no words at all are just what the doctor ordered.

What’s the Rush?

April 3, 2017

Now that you’ve found a doctor you can work with – good.  You’ve always been your own, best, healthcare advocate and you’re well prepared for your upcoming visit.  Naturally, your list of concerns, symptoms, and treatments you’ve tried has been completed.  And now finally, your office visit has commenced.  Your doctor gives you a working diagnosis – one your health issue might possibly be.  The medical term describing your diagnosis may be a very long one that you’re unfamiliar with.  Since you’re so smart, you ask her to write down the medical term, the medical tests and prescriptions she may order.  Great so far.

At home you’ll check out Ms. Google and do your research. But, and this is a very big but, stay away from the stories others have written on the net. They only tend to scare you and make you crazy.  Your course of treatment and your reactions to treatment may be totally different than the next persons.  Every patient is unique. Consequently, it makes no sense to focus on what has happened to others. They’re not you. You’re you! It’s best to stick to what pertains directly to you and your illness.  I know it’s hard to stay away from some of the more “amazing” stories you’ve heard or read.  We all get sucked into the drama sometimes.  But, take a breath, a break, stretch, get out your meditation beads and  please get off the internet!

Next you’ll probably want to check back with your doctor after you’ve become more knowledgeable about your health issue.  Generally, an office visit – face to face – is best.  If that doesn’t work for you or seems unnecessary, an email or patient portal connection may be enough.

Most recently, I talked with a friend who had an orthopedic problem – more of an annoying problem than an emergency.  Her doctor suggested surgery to correct the problem.  By the time she left the doctor’s office her surgery had already been scheduled!  I understand that the doctor was offering her what he believed was the optimum treatment for her problem, but since it was not an emergency, there seemed to be no reason to rush  into surgery.  Although surgery is a valid option for many patients, it’s not the only option available. And surgery, as we all know, has risks even under the best circumstances. As patients we can then become our own, best healthcare advocates by pausing and observing what is happening to our bodies over time. Can we take some time to wait, to watch and see how we’re doing?  Is our problem improving, remaining the same or progressing?  Additionally, we can seek a second opinion and reassess our personal goals – what we’re willing to do to get the results we’re after.  There truly is no reason to rush into a procedure unless it’s a true emergency, you’re having a lot of pain, you’ve got an infection or fracture.  Those need to be addressed immediately.  Short of the above, you have the opportunity and the power to take control of how much, when and what you choose to do about your health.  It’s fine to ask your physician if he/she considers your problem an emergency.  That’s a very smart question to put out there.  Your physician’s answer will guide you to your next step.

I’m often called the “why wait woman.”  When it comes to medicine though,  it’s beneficial to consider waiting, watching, getting a second opinion, assessing your personal goals and doing some research as long as your healthcare issue is not an emergency.   And really, what’s the rush?  #whywaitThursday #trustyourdoctorbutnotthatmuch #healthcareadvocate