Anxiously waiting...

This weekend was great, but it was also awful. As I mentioned in my last post, I have begun the 2 week count-down and forced abstinence from almost all medications. Well, this weekend proved to be more than my poor arms, chest, and neck could stand. It's amazing to me that something so simple, like driving or hugging my children, can cause me so much pain. Not to mention that my amazingly healthy children weigh a ton (Simon is 45 lbs while Rachel is a dainty 30 lbs). Last night, I was hurting so badly that I finally broke down and took 1/2 of a muscle relaxer. The muscle relaxer isn't on the list of drugs to be avoided, but it is on a list of drugs that can lower immunity. My white blood cell levels from my oncology appointment on Oct 7 were low. Not low enough to bother Dr. M, but low enough to bother the surgeons at MD Anderson (I know this from my experience in July of 2010).

I've focused a lot on how I may look following this surgery, but looks are NOT the justification for this operation. Pain is the reason. I'm not talking about weekend-warrior-type pain. I'm talking about mind-numbing, excrutiating, debilitating pain. It's a bit difficult to describe, but I'll do my best. The first problem I reach is where to start??? Since I mentioned reaching, I'll start with my arms.

Bend your arms like you're going to do the chicken dance. Feel the area your thumb is pressing on? This area causes me a tremendous amount of pain that defies description. My 2.5cm (about an inch) diameter tumor was in that location on my left side. This area is where the pectoral muscle connects to the upper arm. These muscles, tendons, and ligaments are under a very thin layer of skin for me. There's no fatty tissue present to add a little cushion because my initial surgeon disected out the tumor with very little "margin" (under only spotty local anesthetic). However, the surgeon doing my mastectomy needed to ensure that all the cancerous cells were removed, so she took the "margins" on the left and a similar amount on the right. In other words, she took an extra inch or more of tissue surrounding my entire tumor area. This has left me with a visible "cave" -- the one on the left is deeper and more obvious, but the right is noticable to me as well. Due to my reconstruction surgeon's recommendations, I wear a brassiere 24 hours a day, 7 days a week. As most women know, the cups extend into your under-arm area, including that area where your muscles, tendons, and ligaments must flex. The combination of no cushion on these tissues and pressure from my brassiere on these same tissues causes a peculiar sensation to creep down my arm. On one hand, I want to say its kind of numb and tingly. However, on the other hand, something that's numb should never generate so much sensation. This feeling extends from my under-arm to my elbow all the way down to my ring and pinkie fingers (although sometimes my whole hand is affected). The best way for me to describe it is as hitting your "funny bone". Sometimes this pain is only present when I stretch my arm a certain way. Other times, like now, the sensation is fairly constant. The only variable is how much it hurts and how much of my hand is affected.

From my arms to my collar-bones is a short journey. This pain is probably the easiest to describe, yet the hardest to understand. I constantly feel as if my collar-bones are being pulled upon. Sometimes I can almost envision a set of fingers wrapped around each collar-bone trying to pull them from my chest. The implants I'm carrying around as breasts weigh about 2 lbs each. Two pounds may sound insignificant, but day in and day out the constant weight of 2 lbs can add up to pain -- especially when you consider that the only support these 2 lbs get is from my bra (causation of my arm pain) and/or the skin covering the implants. Unlike natural breasts (or foobs created by using a person's own tissue), implants are not attached to my chest wall or any other support structure. They are suspended primarily by skin and a very thin, stretched-out muscle layer. This constant weight causes pain that goes from tolerable to impossible any time I must lift or carry anything over a couple of pounds. Above I mentioned that neither of my children are under 30 lbs, so even picking up my children has become something that causes me tremendous pain and sadness.

Next in this progression comes my chest. For as long as I can remember, I've always had chest pains. Not of a heart-attack variety, but of an asthmatic variety. Anxiety also causes my chest to get tight and eventually hurt. The pain in my chest is sometimes of this sort, that tight feeling that eventually wears down the muscle fibers until you feel like they're going to fray. That's the best type of chest pain I have. Other times, the tightness has gotten so bad combined with a particular motion (or even laughing) that sends a sharp stabbing pain through my chest. This pain I think is a combination of the implants irritating my chest wall, tension, anxiety, and asthma. Removal of the implants will hopefully remove at least one of these causes.

Pain in the neck comes next, and I don't mean the kids, husband, or work. I literally mean my neck hurts. This pain generally manifests itself after all the other pains have brought my defenses down. The tension from my chest creeps up my neck as the pain continues or worsens. I slump my shoulders, round my back, and tuck my chin to try to protect my painful areas. As my shoulders slump, my bra straps dig into the tender area between my shoulders and base of my neck. The neck pain again defies description. Sometimes it is an extension of my collar-bone pulling pain. Sometimes it is an extension of the "funny bone" pain from my arms. Sometimes it is an extension of the tightness of my chest. Always it is debilitating and exhausting. On a bad day, the pain engulfs not only my neck, but also my lower jaw. Turning my head, eating, or even swallowing become monumental efforts of excrutiating pain.

Again, the line of pain extends to include my head. My head will be much studied tomorrow. I have been having blinding headaches for the past several months. Headaches are nothing new to me, I think I began having them around age 6. Everything including allergies, sinus, migraines, tension, and stress have been given as causes for my past headaches. Sometimes an allergy/sinus pill removes the pain. Sometimes a migraine medicine relieves me. Sometimes 12+ hours of sleep is necessary before I feel human again. Lately, nothing has been working -- not even the narcotic pain relievers. The pain again varies but the worst is when it feels as if a railroad spike has pierced my head right above my eye (sometimes left, sometimes right, sometimes both simultaneously) and exited at the base of my skull. This development was noted by Dr. L in Houston with a small bit of concern. She recommended an MRI, "just to be sure" that I haven't experienced a metestasis to my brain. She reassured me that she seriously doubted anything would show up on the MRI. Dr M kind of snorted and said that he'd add a PET scan to the MRI, but that he was just scheduling these tests to set my mind at rest. He cavalierly said something about me being too young and healthy for something like a brain metestasis to occur. Of course, this kind of cavalier attitude has previously been disproved by my initial diagnosis. Tomorrow is the big day for my MRI and PET scan... 730 am my aching head will be visualized repeatedly.

My reasons for describing these various pains I suffer is not to generate sympathy. The purpose is actually two-fold. One, I want to document how I feel right now so I can somewhat objectively compare my current pain to my post-surgical pain. That will be the benchmark that measures a successful operation October 28. Two, I tend to gloss over the pain because I internalize so much of it. Instead of speaking (or writing) about the pain, I pick the fluffy aspects like what I'll look like, mostly to avoid any pity. Another aspect of avoiding the pain issue is that if I verbalize it (whether in writing or speech) I can no longer try to ignore it. Verbalization makes it real and unavoidable. Sometimes verbalization makes the pain the elephant in the room. So far, none of the doctors I've visited have ever experienced a patient quite like me. None of them have ever seen some one with pain issues like me. None of them have ever seen someone who deals with it (the pain, the diagnosis, life, ??) quite like me. What can I say I'm an individual individual! ;-) However, for all my quirks and medical oddities, there is no denying that my pain is real and has reached insurmmountable levels. This is what my current battle is about -- relieving the pain I'm living with constantly, that no one understands.