Lumbar Fusion meets Tamoxifen

Lumbar fusion wasn't that long ago. September, 2012.   I thought I would stay "normal" after I gave up the cane late last fall. Instead, I got non-invasive breast cancer.  And, the last few days I've felt 100 years old.  So right now I'm on hold with Barnes & Noble reserving a copy of Strong Women Stay Young.  But I've owned it before, and it wasn't the whole answer for me.

Will every discussion like this for the next five years involve whether Tamoxifen is making me tired? Or making me ache?  Or making me whatever?  Mayo Clinic website lists sleepiness and lower back pain among its bushel of side effects.  How can anyone know whether feeling old and achy is age or the medicine or not doing her exercises (I've only been walking lately.) Or all the above.

I want to be strong enough to take my laptop to Starbucks and sit there looking at the trees and people while I type up my notes.  But moving my laptop around feels like carrying a German Shepherd.

True, my arms and upper body have never been very strong.   Once I lived in a beach  house with a loft that was accessed by a knotted rope.  I only got up there once, with help. And the bit of physical therapy I had when the spine first went bad was for my lower body.

I do NOT want another Xray, but I do want a Physical Therapy assessment and/or maybe some very slow, very easy Pilates.

Okay, take action.  I'm seeing my primary in a week.  I can email the California surgeon (thank God for doctors with email) and ask once more if they found that Xray.   I can ask my primary doctor to have an inspiration.

Caring for my health with Tamoxifen is mental exercise in a life skill I haven't always been great at:  making the best possible change when I don't have any way of knowing all the facts.  

WHO KNOWS WHAT ABOUT BREAST CANCER?

A notice I read this morning reassures me:

For eleven years now, there's been what I would call a symposium on breast cancer--experts presenting material on possible controversies in breast cancer practice.  There is also an online reprise, and NPs, PAs, and many others including pharmacists, "and any other healthcare professionals interested in the treatment of breast cancer are invited to participate."

That last part is what caught my attention, because I read yesterday about conflicts in an area of health design because "specialists can be territorial."  So "other healthcare professionals. . . are invited to participate" is heartening.   This is the first of these meetings that I've checked out, so maybe that universal invitation is typical.

Since I lately went to a lunch/talk by an oncology pharmacist, now I know that she, too, can get this free continuing education.

Of course, it's voluntary.  And I'll never know if a particular nurse absorbed it all, or even tried.  

But it felt like a plus as I read about it.  We do our best with our own research, but we hope that somebody may know something newer, better.

Be well.

CANCER OR NOT-- What's in YOUR medicine cabinet? Do you need it/them?

Well, Dr. Salwitz and Sunrise Rounds dropped a bomb on me today!  I spend so much time trying to be polite.  And being urged by others to be more polite instead of forthright, that I dial it down sometimes when I should shout it out.  I'm always grateful and impressed with his courage when he write to get  our attention.  (As I usually want to get yours.)

Today, his headline "Doctors: Say No to Drugs!" got my attention instantly.  Except I thought he was going to talk about doctors using drugs.   I

He opens with a slammer:  The United States of America is addicted to narcotics.  

I'm wanted to get your attention by saying he meant:  the doctor as pusher.  Our pusher.

But I think what he really says is:  We are drowning in excess drugs and only the doctors can control the floodgates.  

He talks about cancer patients, and how few drugs are necessary for cancer pain.

He talks about the rest of us.

We blame the parents when a kid goes shopping in the medicine chest, shares with his pals, and they all end up in the hospital - if they're lucky.  But how did the parent get that pretty assortment?

We blame patients who raise a fuss until they (we) get the one we want, or get whatever pill to deal with our discomfort, or behavior, or awakeness.  And did I forget to mention the shots for losing weight?

In my closet is a vial of yellow pills I will never take.  Were they sent home from that first ER and admit after  the pain kept me from walking?   No, I think I had a prescription - but did my own doctor write it, did the spine surgeon write it, did some hospital doc write it?  It was too strong, dangerously strong for me.    But I digress.

He mentions pharma manufacturers who make billions, but continue to rave about new drugs that are not proven, and probably dangerous.

He mentions some narcotics by name, and I recognize the names of ones that people do swap, thinking they are helping that friend with the cast or the broken rib, or the broken heart.   My mom had some with her in that other century, when my wedding was hours late starting.

He is tough tough on doctors here.  I wish you would read some of it.  I wish we all would not beg for something dangerous.  I salute you who have flushed some.

Be well.  And love conscientious doctors.

FIRST VISIT TO A NURSE PRACTITIONER

I've known, since I worked for a medical malpractice insurance company in the 90s, that there were nurse practitioners NPs).  I didn't know they were "advanced practice RNs" (APRNs) with much advanced training.  I didn't know that the "...concept of the APRN as a primary care provider was created in the mid-1960s,"  says Wikipedia.  

One morning recently, I learned they can be primary care providers when I had a strange skin inflammation under my breasts (including the radiated breast) and couldn't get in to see my doctor.  The office could work me in with the NP.  It was no time to hide from the unfamiliar.  At least the NP was a woman.

During the couple of days before my appointment, I looked up the various skin rashes on line, and thought I found the culprit.  My breasts are heavy, no longer perky, and the climate here is best called humid.

I like her as soon as she said "Hi."  She's not a kid, and has the look, somehow, of experience.  I was right about that.  I told her my problem and a few things about me.  She grabbed the ever-handy computer, which she worked like a pro, found my meds list, cleaned it out and updated it in a hurry.  She made suggestions for keeping clean between showers in this climate:  baby wipes.  (Insisting that since they are for preventing diaper rash, I might like them better than my feminine wipes.)  

I told her about my feet, also, and how I'd given up on finding a good podiatrist who knows all types of foot anatomy.  She immediately gave me the name of one she'd worked with in the past!

She punched a few keys and sent a prescription to my drug store. Gave me a couple instructions for the cream.

We talked about OB/Gyn doctors and Well Woman exams. 

I thanked her profusely, trying to express how great it felt to deal with not just a new problem, but with things long neglected during the spine saga and the DCIS saga.  What a relief!

PS  Speaking of the DCIS saga, I now suspect my skin problem may be due to a thick liquid baby soap I've been showering with since the beginning of radiation. We'll see.   

DCIS . . . neglecting the other 95% of me

Starting with the callback for more mammos, DCIS and the C word just seemed to eat my life.  When I say that out loud, someone usually answers:  I know.  It does.  

I had left my spine surgeon in L.A., and the spine problem had eaten my life there for six or eight months, including not being able to drive to any doctors. 

Now I've come up for air and realized how much has been neglected.  The dentist's future plans and mine have yet to coincide.  My feet hurt, I know I need a podiatrist.  Learning to eat without soy; giving up milk for stomach health.  And remnants of tendinitis were the icing on the cake. Oh, and that little diagnosis of migraine.

At least I don't need to use the cane anymore.

I remember being hopeful and happy before the lumpectomy, and usually energetic during the radiation weeks.  Well, except for that first day of the '"boost."  I did see the dentist right before radiation started, partly because he was sending me reminders all the time.

Then, before I even got to meet the medical oncologist, I had the nasty sinus thing that was sending people to bed around here.  Slowly the energy started to fade.  The oncologist gave me a couple more weeks to heal the sinuses, start Tamoxifen.

I still don't know if Tamoxifen is what slows down my energy.  And what I read about its side effects makes me know I have to find an OB/GYN who knows the latest findings and can consider my history.

I don't think I have fuzzy thinking, but the lack of energy, the dreariness, bothers me.  I may just have been trying to do too much, making up for lost time.

And the per cent I'm sure I've neglected is the psychological part of me, what used to make me energetic, what used to make me brave.  And sometimes proud.

FDA Warns of Cancer Risk with Laparoscopic Device

When I was worried about whether to risk Tamoxifen, a sweet social worker who has taken it, emailed me some comfort.  She only mentioned a couple of serious possible side effects.  One was uterine cancer. She made light of it, saying one would just have a hysterectomy.  I tried to go along with the downplaying.

Then I read about Dr. Amy Reed, whose doctor husband was in conflict with Brigham and Women's Hospital, insisting that laparoscopic power morcellation in her hysterectomy spread an undiagnosed cancer throughout her abdominal cavity. The doctor and her husband have been fighting to get the procedure  publicized and stopped.

Why do I care?  Because the procedure is in use, and the FDA cares.    According to this April 17 medpage article, doctors don't always mention this potential danger to their patients.   Maybe they don't even discuss how they're going to do the hysterectomy.

Now, in the back of my mind with fear of uterine cancer, I have to remember  what kind of hysterectomy.

What you can do is, if you like, read the story, in USA Today or medpage, then put a note with  your pills.    Put it in your medical proxy directions.  Put it in your wallet.  And tell your GYN what is not permissible.

Update:  See my somewhat more polite comment on medpage under the title article.

DCIS - YOU'RE CURED. . . . What? I'm supposed to have a written survivor plan?

 "Beginning next year, the American College of Surgeons Commission on Cancer will require a written survivorship care plan for every survivor after completion of primary treatment." medpage today.com Apr. 21.  The article showed that cancer doctors are not doing this now.   

What do I have instead?  What did I do for myself to plan for survival?  

I went back to the surgeon a month or two after radiation for some pain near the radiation and surgery sites.    He said some radiation effects last.   He told me to call the radiological oncologist.   

 I dialed her number and got a nurse who is not good at talking with patients.  I didn't insist on seeing the doctor.   

What about the medical oncologist?

Tamoxifen.  I told him I thought it just made my regular problems somewhat worse, I hadn't seen a specific new problem.  What bothered me was depression and I couldn't lose weight.  He told me we should take the depression seriously, and put me on an every-3-month visit schedule. I got an order to have blood drawn before the next visit.    

 I'm wondering what should be on a written survival plan.  
A written plan would not have helped with things that don't require any new or ongoing actions.  
One problem: doctors who are not good at explaining things aloud may not be any better at writing clearly what to do. Or what they will do.

Do  DCIS patients need a written long-term plan?

Without one, what can we do?

We can do our research, even with other survivors.  
We can ask the doctor about specific items we've read and heard about that concern us.
We can take a list of items with us to the doctor.
We can insist he answer when we ask about daily and weekly and yearly care.
We can avoid expecting oncologists to be mind-readers.

For example:  I read about thyroid and other hormones.  I told the medical oncologist I hadn't had a thyroid test for years and asked if I should.  He ordered one. The moral of that story is:  If you're taking a medicine when you meet the oncologist, he may think your primary doc is checking on it.

If we had a written survivorship plan, I think we would already know most of what would be on it.

We would follow through on it about as well as we have on medical plans so far in our lives.