A Cut Below...

I typed a long entry yesterday in the car on my way home from the cardio-thoracic surgeon. As I tried to schedule it and add a photo it got lost. Here's a brief synopsis.

The doctor indicated that physical therapy has the same chance of curing my issues as surgery. However, since I've been doing PT for almost 6 months, it is unlikely that PT alone will resolve my circulation and/or nerve issues. Therefore surgery is my only option.

The surgery involved an incision at my collar-bone and the removal/resection of my first rib. This will open up the thoracic outlet (the triangular opening between your first rib and collar-bone where your nerves and blood vessels thread through to go from your spine/neck to your arm). As long as no scar tissue blocks this opening or there isn't some other cause for my issue, opening this channel will allow more room for movement and normal circulation. Due to my mastectomy lymph node dissection, lymphendema is a distinct possibility. That is actually why the surgeon is proposing the supraclavicular incision -- to stay away from my lymph nodes. He was concerned about scarring, but since I'm a veritable roadmap of scars already, one more won't be a big deal.

Best case scenario: the surgery succeeds and with continued PT I'll regain all circulation and the nerves (and muscles) will be healed. After a two week (minimal) recovery period, I'll begin PT again to ensure the mechanics of my arm and shoulder use are appropriate. Then as long as scar tissue doesn't form in the first year or so, I'll be cured. I'll have another scar, but hopefully no more pain. The chances of this surgical outcome is in the 60-70 percent range for the circulation (not the nerves/muscles).

Moderate case scenario: the surgery will cure the circulation issue, but the nerve/muscle issues are permanent. This is still an improvement over my current state because improved circulation should stop any further damage from lack of blood supply. However, if the nerve and muscle issues aren't blood supply related, those issues can become worse or stay the same. I'll have a new scar, and have improved circulation, but I'll still have most of my current symptoms.

Worst case scenario: during surgery the nerves and/or blood vessels are nicked or injured. This could cause permanent damage as bad as paralysis or complete numbness. If only the blood vessel is nicked, grafting another blood vessel (or medical substitute) can restore circulation. I'll have a scar and new, worse, symptoms.

Of course, with me being me, there is a chance of some really odd consequence to this surgery. This kind of reaction cannot be foreseen and will undoubtably be difficult or even impossible to diagnose, locate, describe, or cure. I'm really hoping for a complete cure or even a partial one that will ease at least some of my pain. I'm praying, will you join me?

New do...

Taking My Cut...

... And Giving It Away!Two years ago today, I was very proud of my 1/2" of thick black hair on my head. I was attempting to return to work after being ravaged by my chemo, birth of Rachel, more chemo, and surgery. I was looking forward to learning my new "normal". Sadly, about the only thing that went as planned was the return of my hair. Prior to chemo I had silky, straight, medium brown locks that defied any stylist or product. After chemo I initially mourned that I wasn't getting the chemo curl that I'd heard about, although my medium brown hair had returned decidedly darker--almost black. Later, as my hair gained length I noticed I also gained curl much to my delight. I can honestly say that with the exception of Rachel and the love, care, support, and friendship of others; my curls are the best result of all the treatment. After two years of growing, my hair has finally reached approximately 10" in length from a low ponytail. If I divide it into halves on either side of my head, I have more like 12" on both sides. The curl is fairly prominent, but easily controlled. I can't remember exactly when I decided, but somewhere along the line, I resolved to grow my hair to this length and then donate it to a worthy cause. I have chosen Locks of Love because they are the most prominent organization that I've found. (If you have any information that indicates Locks of Love is not in-line with my beliefs, please speak up!) Tomorrow a friend and I will be going to the salon next door to our work-place and taking our cut. We both plan to give our cut to Locks of Love. We are both a bit nervous because we've had our long hair for quite a while now. Our husbands like long hair (to a degree) and our children have become used to it as well. Her son is 3 and has told her that he is going to be mad at her for cutting her hair, but he's glad she's doing it to make a sick person happy. How sweet is that!?!? Neither of my children seem to care one way or another. I going for the look made famous by Rapunzel at the end of Tangled. Yes, I know it is kind of silly to chose a cartoon character for my hair-style guide, but I've watched the movie a thousand times--it's Rachel's favorite--so those characters are indelible on my mind. I found a photo of a real live woman with a similar style. I will update my blog with photos hopefully this weekend! Wish us luck!!

Going with the Flow or Lack Thereof...

I am still in need of prayers it seems... My work life hasn't gotten any better regardless of my intentions, attention to details, and prayers. Today I got bad health news again. My mastectomy apparently took more than just my breasts... For almost 3 years I have had pain and numbness/tingling in my arms -- especially the left -- that has gotten worse and worse with time. Sometimes these issues cause enough of a problem that performing normal activities is impossible. Other times, I cope so well that there is no noticeable dysfunction, although I am always conscious of a deficit. These issues with my arms are the root cause of my trouble at work, but no one in power has the decency to recognize it.

I first had my exchange surgery that was supposed to alleviate the pain. When that didn't work, I was basically dismissed by the plastic surgeon. She conceded to send me to a pain management doctor. However, pain management (in my experience) is a farce. The pain doctor gave me pain medications and injections in my cheat-wall. When the injections didn't help, I was told that pain medications were the only way to solve the issue. I asked about physical therapy or even massage therapy to no avail.

When I returned to the plastic surgeon (and a second opinion) I was given the option of having my implants removed in the hopes of alleviating some of the pain. Once the large ones were removed I had two options: smaller implants or no implants, and therefore no breasts. Fortunately, I chose the unstated third option -- traveling back to Houston for a third opinion. That is why I had my most recent surgery.

This surgery has been a partial success. My new breasts are smaller and the flaps healed well. However, the root of my problem -- pain, numbness, and tingling -- still persists. That unfortunate fact sent me to Supportive Care at Houston and ultimately to my awesome physical therapists here locally. I have made pronounced improvements according to my PTs. However, they include recovering from that brutal surgery as improvement. When I first presented to them I could not stand up straight, much less stretch, bend, and move like a normal person. Even they have come to the conclusion that my body didn't read the medical books and is so vastly different it's amazing that I even function.

Even awesome physical therapists are limited in what they can heal. However, combined with an internist who actually listens and knows how to diagnose, I've had several tests to elucidate the cause of my problems. First, I've been told that I have neurogenic changes in the upper branch of my left brachial plexus as a result of my very painful EMG. Now added to that significant dampening if arterial blood flow of my left thoracic outlet (under my collar bone) has been noted via a vascular study. Combined, both of these changes spell disaster for my hands if nothing is attempted.

I've been doing physical therapy since November to try to fix the pain & numbness, but apparently that's not enough. My internist is now sending me to a vascular surgeon to address the arterial blood flow and possibly the nerve changes. I'm scared of another surgery -- especially this kind -- because the lack of marked improvement in the nerves by surgery. The circulation surgery has a high success rate, but I'm not sure what that means as far as pain, numbness, and tingling symptom removal.

I'm so very worn down by all this bad news. On one hand, I am glad to finally have a diagnosis. On the other hand, I desperately wish I didn't have this trouble at all. I wish I could be like the 'typical' breast cancer patient. I think I'm sinking into depression. I don't know what to do. I guess I'll just do as I'm told and wait for the other shoe to drop.

Hopeful but Trepidatious

I had planned to be sound asleep by now. As I'm writing this it is about 20 minutes into Monday, March 5". Tomorrow I have an appointment to discuss the results of my intensely painful EMG. Hopefully I will learn a bit more about the unforeseen consequence of my cancer treatment. Right now, I'm too busy dealing with the consequence to be able to sleep. I'm using Andrew's TENS unit to try to shock my muscles and nerves in my left arm and hand into submission. I also have physical therapy tomorrow. My PT is going well, but there's only so much that can be done. Some days that really bothers me, but other times I know that I'm trying my hardest to overcome this latest fiasco that is my life.

I do have good news too though: I think my hair is finally long enough to donate to the Locks of Love campaign. http://locksoflove.org/donate.html I just recently realized what that means.... My hair has grown an amazing 10" or more in a little over 2 years. That is an incredible change. From almost bald this time 2 years ago (see the photo at the bottom of this page) to having a 10" ponytail! I'm excited to donate my chemo-hair to a worthy cause.

Chemo baby is also doing quite well. The only problem she has is excema. Truth-be-told, Dr L in Houston said that the likelihood of my chemo causing Rachel's excema is slight. Rachel's pediatrician indicated that my asthma and seasonal allergies as well as Andrew's allergies probably contributed the genes responsible for Rachel's excema. We're all hoping that she'll outgrow it soon.