Sunday, March 20, 2011

On Being your Own Doctor

I sure hope none of my doctors read this blog, because I have a feeling they won't like this post.  On the other hand, I wasn't getting a lot of help from them, and desperate times call for desperate measures, ya know?

My shoulder has been a big, throbbing, agonizing trial in my life; quite unfair after what I've just been through.  Yeah, cancer can be life-threatening and scary and time-consuming, but for the most part, it didn't hurt.  This adhesive capsulitis has been harder on my lifestyle in many ways, and that is mostly due to the intense pain.  Even the fact that I can only lift my arm inches high isn't the problem that the pain is.

I happen to have some strong prescription pain pills.  I have never once taken more than prescribed  - until this.  And yet, they didn't touch this sort of pain. It was like taking skittles.  In all my searches, it does seem that there is something about this particular injury that doesn't respond to typical pain methods.  I wasn't about  to ask for anything stronger than I take, so I resorted to hot baths, which gave me brief relief.  I even filled a sock with rice and spent every 10 minutes at work, all day long,  microwaving it and letting it rest on my shoulder, like a limp squirrel, to try to dull the pain.

Picture me, sitting in the Principal's front office, dressed in nice clothes, with a big, fuzzy sock of rice perched on my shoulder.  That screams "superb educational facility" doesn't it?

Lack of sleep has been a problem too, and coupled with the long days I've had to put in at work, my resistance has been low.  I actually called my doctor's office and begged for relief - for something to help me. Begged with tears in my throat.

No response.  Maybe they thought I wanted pain meds.  I didn't, I wanted a nerve block, a hammer to the head - anything.

I suddenly realized something.  I had leftover steroids from chemo.  Some people get relief from steroid shots with this disease (although my doctor said no).  I googled "oral steroids for adhesive capsulitis" and found some citations.

Hey, they'd been prescribed for me, right?  I'd taken them before and they hadn't killed me, right?

What's the harm?  It's worth a try.

So, I popped one.

The next morning, the pain was lessened.  I couldn't believe it.  I popped another, and felt even better the next day.

I'm on day 8.  My pain level is down from a 10 to a 2.  I even have regained some range of motion. I still can't change positions in my sleep, but when I'm still it doesn't hurt and I'm getting several hours of rest at a time.   I am starting to do the physical therapy exercises I was told to do when the pain reduced.  I think this medication helped stop the inflammatory reaction and  has pushed me past the worst stage, and now I can concentrate on recovery.

I know steroids are nothing to toy with.  I am taking them for 10 days, and then will taper off.  I'll take a half the 11th day, a half the 12th, a quarter the 13th and a quarter the 14th and be done.  I'll still have five left just in case that taper isn't enough.

I don't recommend that anybody do what I did.  I recommend that you go in to see your doctor and demand relief.  I recommend you be more assertive than I was.  My excuse: I wasn't getting the idea that anybody was taking this condition seriously, not to mention the misdiagnosis - but I also really didn't want to go in a third time and complain.  I didn't feel like I had the time.

So, I took care of it myself.   I'm self-sufficient that way. And, yes, a bit of a risk-taker.

Anyway, it worked.

It still hurts, don't get me wrong.  But, it's much better, I am not thinking about how much pain I'm in all day long and trying to smile through it.  Now I know I can recover.

The moral of this story?  Throwing old  medications in the back of the bathroom cabinet instead of throwing them away can sometimes pay off.

Maybe those folks on Hoarders are on to something.

Monday, March 7, 2011

Viagra for Cancer

What do you get when you mix Viagra and Rogaine? Hair on your head that stands straight up.

I regularly receive email updates about new breast cancer treatments. You never know, foreplay forewarned is forearmed, or something like that.

I recently opened up my inbox to find this astonishing news:  Get Viagra 65% off!

No wait, that's not right.  What the email actually said was, "Drug Now Used to Treat Erectile Dysfunction May Enhance Delivery of Herceptin to Certain Brain Tumors."

Okay, first let me stop and give a big cigar congratulate Google on their fantastic spam filter.  Because, not once have I ever had a real Viagra ad penetrate added to my Gmail inbox - they always end up sort to the spam folder.  Yet, it didn't filter this one out; I got the Herceptin/Viagra story in my box email where it belongs.   Very impressive.  How did it know my desires interests?  Talk about "enhanced delivery."

All righty then, back to the story.  Herceptin, the wonder drug, has a flaw: it does not cross the blood-brain barrier. The blood-brain barrier was erected designed by nature to protect our brains from dangerous substances, such as bad viagra jokes, but what it means for cancer patients is that certain drugs can't get through to kill swollen bad cells. Herceptin cannot treat HER2+ breast cancer that has engorged spread invaded the brain. Apparently, if you add a big large generous dose of Viagra to Herceptin, it adds enough thrust power to break through that blood-brain barrier and bathe the brain in its heaving healing properties. Not only that, but it raises enhances the effectiveness of the chemo drug, Adriamycin.

That brings up conjures up some questions, doesn't it? Like, who on earth thought to put those drugs together? I suppose the word mastectomy does scream erectile dysfunction, now that I think about it. In fact, the whole idea of cancer is kind of a downer, so never mind.

Anyway, the lead researcher, Dr. Keith Black, a stroke neurology specialist, had discovered that erectile dysfunction drugs inhibited a particular enzyme, which then caused an increase in the permeability of the brain and a surge growth in the effectiveness of Adriamycin. He tested his theory regarding Herceptin using mouse models (oh sure, it's always models who get to try the good drugs) and discovered that it led to a fifty percent rise increase in the amount of Herceptin that reached the brain.

The researchers concluded that adding an erectile dysfunction drug to the herceptin regimen led to a 20% increase in survival, which in medical terms, is massive tremendous.

This exciting interesting research could be an important tool weapon in the fight against metastatic breast cancer.  That's hot good news.

I'm just not sure the world is ready for a bunch of bald, boobless, horny cancer patients running around.

Sunday, March 6, 2011

Post-Mastectomy Problems

Regular readers, bear with me as I do a quick recap for newbies:  Immediately after my breast reconstruction surgery, my shoulder began to hurt.   At my two-week follow-up, I told my plastic surgeon, who said give it time and if it didn't go away, he'd refer me to physical therapy.  It didn't, he did, I went. My first two visits were with some nice but granola-y ladies who iced my shoulder and put a tens unit on it and taught me to stretch my neck. They thought I had "impingement syndrome."  Their icing did nothing, and the pain increased to "I'd rather have cancer than this" levels, so I went to an orthopedic surgeon for a real diagnosis.  He, after putting me in his infernal machines,  diagnosed me as having a level one SLAP tear.  He proposed a month of physical therapy and if it didn't improve - surgery.

But, it didn't sound right to me.

Everything I read online about this SLAP tear said that there is only mild to moderate pain, and mostly upon moving.  People seem to go about their lives pretty well with it, and a level one SLAP tear doesn't even need to be treated most of the time, it can just be a sign of aging.  Athletes talk about throwing balls through the pain.  Often, people don't even know they have it.

Well, I can't throw any balls.  I can't move my arm.  And, the pain is incredibly intense. I am not kidding or exaggerating, it's really, really bad.  My arm hurts all the way down to the wrist and into my back, and any motion causes a cramp-like spasm all through it.  Sometimes I just have to stop and wait for the pain to go through me.   There is no position that is comfortable and it never goes away.

But, I have to believe the doctor, right?  He's the guy who went to school for ten years, not me.   I began to think cancer had turned me into a hypochondriac; had changed me into somebody who thinks mild things are now major.

Anyway, armed with a diagnosis, I vowed to do physical therapy diligently, and take the pressure off this shoulder and the tear so I wouldn't need surgery.  I'll show them who's a wimp.  If they want me to exercise, then by God, I'll exercise.  (That's how bad I  want this terrible pain to go away.)

I went to the new physical therapist located in downtown Sacramento - a male this time.  This seemed like a much more professional set-up than the last place, and I could see all kinds of exercise equipment and people working out and all the stuff I've hated all my life.  Not a margarita anywhere, nor a book or couch.  I began to long for my granola ladies and taking a nap with a tens unit on.

Mike examined me - put me through some painful range of motion tests, and then he gave me his opinion, which was very different than the doctor's. He warned me he doesn't diagnose, but he does see people every single day with what I have:

Adhesive Capsulitis, commonly known as a Frozen Shoulder.

It fits perfectly.  The gradual onset of symptoms, the severe pain, the inability to sleep, the loss of mobility - it all makes absolute sense, and is exactly what I have experienced.  The SLAP tear isn't causing my problem, it's the frozen shoulder.

And, it's been known to happen to women after mastectomy, and it seems to have an autoimmune component to it - your body starts attacking your joint.

I was very relieved when he told me.  Nobody can understand why I feel that way, because it takes two years to recover from this, and I will be disabled for those years. For me, it's a huge relief knowing what it is.  I never believed the SLAP diagnosis.

We do know our own bodies, even when they go wrong.

Adhesive Capsulities has three phases.  The first phase is characterized by severe pain and increasing stiffness of the arm.  That lasts four to nine months.  According to my physical therapist, nothing should be done for you in this phase - do nothing to cause yourself  pain, because that can increase the inflammation process.  In the second phase, the pain begins to lessen,  but so much scar tissue and inflammation has built up the shoulder joint is completely stiff.   This also lasts from four to nine months.  The final phase is the unfreezing process, which also takes the same amount of time  Pain is milder and you gradually get your range of motion back and most people recover 90% of their ROM.

People will recover even without doing physical therapy.  But, once you are in the latter phases, you can return to normal life quicker if you do PT, so he told me to come back in a month for measurements and then in a few months for therapy.  He suggested I buy a pulley system and .use that in the hopes of keeping what ROM I have now, but admonished me not to hurt myself.  He also said to roll a basketball around on a table for ten minutes a day.

I love this:  He said take lots of hot baths and read a lot.  That is my kind of physical therapy.

It has been 3 1/2 months since my surgery and it's still extremely painful, so I am still in Phase I.   I am nearly unable to move my right arm.  I can't move it behind me at all:  I couldn't scratch my butt if you pointed a gun at my head.  Putting my hands on my hips to do the mother/wife stare-down?  Impossible.   I can only raise it sideways to the level of my hip if my arm is straight out.  I can raise it in front of me almost to shoulder height, but not above my head.  It isn't pain that prevents those movements - my arm just won't do them - the shoulder is stiff and tight.

But, I am in serious pain still and sleeping is next to impossible.  Worse, I can't throw the covers off me if I get a hot flash; my arm doesn't  have the kind of super-human strength it takes to toss a blanket.

The frozen shoulder is keeping me hot.  Miserable and hot.

As it is, I can't blow dry or flat iron my hair and can only wash it with the left arm.  I'm getting close to the one year anniversary since my last chemo and I want to style my hair!    I can't tuck in a shirt.  I can't snap a bra.  I can't shave my back.  Wait, I mean I can't scratch the back of my head.  I can't button my jeans, which is a problem, as you can imagine.   I can't carry a bag or a purse or anything with my right arm. I can't wear a pull-over, everything has to be button-up, so I can ease it over my useless arm.  I can't drive long distances as I can only turn the wheel with one arm. I can't hail a taxi, which will be a big problem if I ever go to New York.  I can't wave bye-bye to the Sacramento Kings.

Here is the worst:  I have to take my husband shopping with me.  I know you ladies are nodding in solidarity at the horror of that thought.  I've lost some of my independence and now I get to hear comments about how much things cost.

Most alarmingly, it is getting harder and harder to type or use the mouse.  I've a USB extension cord for work and have moved my mouse to the edge of my desk so I don't have to reach, but even that is getting difficult.  Pretty soon, I'm going to have to put it on my lap.

I am right-handed and it's my right side, but I'm already adjusting.  I'm getting good at reaching out with my left arm to take something or open a door.  Before you know it, I'll be ambidextrous.

So, there is my post-mastectomy story.  Like with chemo, at least I know that it will some day be over, and I'm okay with that.  As long as my doctor keeps prescribing pain medication, that is.

I have been handed dozens of little brochures during the course of my cancer, and none of them mentioned adhesive capsulitis.    It is not preventable so it wouldn't have mattered, but I had an x-ray, an MRI and an MRI arthrogram for nothing.

Before, I thought the term "frozen shoulder" was just a catch-all phrase encompassing any shoulder problem or stiffness - I didn't realize it was a real disease on its own.

Well, I do now.

I am going to document the process through pictures, so I'll take some illustrating how much my arm moves and then I'll post them here like I did with my hair.    Because this does seem to happen to women after mastectomy, it's part of the cancer experience so you all are just going to have to put up with my whining until it heals.

Sorry about that.

Tuesday, March 1, 2011

A Nice Story

Back when I was first diagnosed with breast cancer, some of the other school secretaries pitched in and bought me a large, creamy white orchid, which was delivered to my home with a card signed by them all.

This was impressive because school secretaries don't actually work together - there is only one per school, and we see each other once a year at district meetings, if that. We do email each other occasionally - where do you buy this, how did you solve that?  We are in an exclusive club, but all alone in the clubhouse. So, somebody really went out of their way to do this, which was very thoughtful.
It was also crazy how fast word about my cancer traveled through the district.  Stories like mine jump from school to school faster than Charlie Sheen can appear on a new radio show.  I'd just been diagnosed when the plant arrived at my doorstep.

Anyway, my lovely orchid earned a spot in the center of my coffee table.  The blooms lasted through my mastectomy and recovery, and I got many hours of enjoyment out of them.

Now one thing you need to know about me is I'm a plant killer.  My thumb is so black that light disappears around it.  So, when the blooms fell off and died, I figured that was it for the plant.  It still had some green on it so it wasn't ready for the garbage yet, but I knew it wouldn't be long. I moved it into the kitchen and forgot about it. I went back to work, finished my chemo, continued on with my year's worth of infusions.

December 2nd was my last day of herceptin, and I felt great relief, as you can imagine.  I went home, loaded some dishes in the dishwasher and looked up.

I saw buds on my orchid. One almost bursting open.

Not only had I not killed it, but it seemed to be thriving.

As I reached out to touch a fresh petal, I realized that I was given the plant immediately after diagnosis and it bloomed again on my very last day of treatment. It was a nice symbol: the orchid was beginning fresh, and so was I.

Sometimes, life throws some neat coincidences your way. All you have to do is pay attention.