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.