A day that started out badly… ended this way:
So first, let me explain something. I have a bad hip – my right one. I was born with hip dysplasia. Treatment back in the days when I was born (and still often is today!) was to wear a pillow splint. My sister and I both had to wear these for about 3 months. The condition is congenital and is more common in Native Americans, of which we are about 1/12th. None of my children inherited it, thankfully. Since mine was more severe- I also wore leg braces (like Forrest Gump wore) until I was about 15 months old (I think that’s what I was told). What these treatments did was push the head of my femur bone against the socket to “grind” a deeper socket so that my femur would stay in place. What this also causes is early onset osteoarthritis 😦 I have had moderate to severe hip pain since I was in my early 30’s. I often have difficulty sleeping because the pain wakes me up and I need to roll over to get comfortable.
So I sleep best on my left side. You know, the one where I just had my breast removed. They say – expect up to a year after mastectomy before you can comfortably sleep on it again. I also can’t sleep on my back or stomach – have never been able to because I end up with severe lower back pain. I recently found out why, when an x-ray revealed that at some point in my life I had broken my coccyx (tailbone) and it had healed sideways! So my tailbone points towards my hip instead of downwards like it should. It explained a lot of pain that I suffer from (inability to sit on a bicycle seat without debilitating spinal pain, etc).
So right now I can basically sleep on my right side only. The bad hip side. The “almost nightly leg foot cramp” side. Remember I mentioned in my previous post the severe pain from standing up and laying down? Imagine two nights in a row of getting cramps in that foot from laying on your bad hip. Wanting to leap out of bed to relieve the cramp, but learning quickly NOT to do that. I have learned a small trick with the drainage bulb though. I open the plug (making certain the bulb is upright of course), then slowly standing up = much less pain! 😀 I do the same when I go to lay down, then replug it when I am done. See- there is a bright side. Regardless, I am having some very difficult nights trying to get comfortable. I believe it’s getting easier as time goes on at least.
On top of that are the phantom pains. I imagine you’ve all read or heard about phantom pains that people who have had an amputation get? Like feeling that your foot hurts, even though you no longer have a foot? Yeah. well that’s real. I get these seizing, sharp pains in my ‘no longer with me’ nipple a lot. I reach up to massage the area to relieve the pain and realize there is NOTHING there. Just the flat band of the incision that is mostly numb. It’s a very weird feeling! And very frustrating to have such pain or itch that I can’t relieve…
The other very bothersome thing is the constant ‘irritated’ feeling on my arm- towards the back of it, like where it would touch my armpit. I kept thinking there was a stitch hanging out that was rubbing against my inner arm and causing it, but Tim checked and there was nothing. Add to that- my arm isn’t even red nor look irritated at all. I read that it is another way the damaged nerve fibers can cause issues. The nerves have been cut from their original connection and you have to get your brain to “reconnect” properly to the tissue that is left behind. I read that when you feel the irritation, you can touch the spot and gently massage it, and your brain will start to relearn. So far that seems to be helping some.
Slowly, things are healing and even with some bad days thrown in there, it is getting a little easier over time.
So, I told you that I wasn’t able to get my drain out yet, but going to my appointment did give me one thing – the pathology report. When they do the biopsy during the diagnosis of your cancer, you get results on their best idea of the stage of the cancer, whether it has any receptors and its grade (for some explanation of stage and receptors see – interminable-waiting-for-next-steps and there is no magic reason). I don’t believe I ever explained about “grade”.
The histologic grade of cancer has to do with how different it is from normal cells and how fast it grows. There are three factors in determining grade of breast cancer. One is tubule formation (how well the cells seem to ‘communicate’ with each other to form the normal tube-like structures that they are supposed to look like), another is pleomorphism (how irregular or abnormal the cells themselves are), and lastly is mitotic level (how fast the cancer cells are dividing). The score for each goes from 1-3 with 3 being the worst prognostically, and the three scores are added together to get the grade: 3-5 = grade 1 (best prognosis), 6-7 = grade 2 (medium prognosis) and 8-9 = grade 3 (worst prognosis).
My biopsy had determined that my cancer was grade 3, the worst. I can’t tell you how many nights those first dark days that I woke up in a cold sweat thinking about that. Even with the cancer being only stage 2 (i.e. large, but not spread from my breast), the grade of 3 made it much more aggressive and likely to recur.
So, then when they do the actual surgery, they do more testing on whatever they removed- the tumor itself, the lymph nodes, etc. It is somewhat common for your diagnosis to be re-adjusted once they get the actual surgical pathology reports. Sometimes the tumor is bigger than they thought, sometimes it is found in the lymph nodes that they hadn’t found it in before, and sometimes the receptor result or grade changes.
Let me tell you that reading the pathology report can be scary. The nurse and I read through it together. The first thing I looked for was whether the lymph nodes were still truly negative. They were, but this is also post-chemo, so if the chemo worked, they should be negative, even if they may have had cancer before. Only one of my lymph nodes had been biopsied originally and it was negative.
I looked to see that the margins of the tumor (the tissue around the tumor) were negative for cancer cells (many women have to undergo an additional surgery to remove more tissue if the margins are not clear 😦 ). Mine was negative – yay!
And I checked that yes, the cancer was still determined to be estrogen and progesterone receptor positive and HER receptor negative. These are all good results. My cancer has not spread, it can be treated with anti-hormone meds and it does not have the human epidermal growth factor positivity (which they can treat with drugs, but prognosis is lower).
The weird part about reading your own pathology report is the “laboratory” correctness of it all –
“The ellipse of skin measures 16.5 cm medial to lateral and 12.5 cm superoinferiorly. Centrally there is an erect freely moveable nipple noted measuring 1.2 cm in diameter. The skin surrounding the nipple is diffusely blue-green tinged.” Yeah, I’ll bet it was blue-green – not having a blood supply will do that!
So incredibly weird to sit here with my bandages and my flat chest and think that part of my body had been cut off and was in a laboratory being examined by someone else. The worst part: “specimen is partially covered by an ellipse of gray-tan wrinkled skin”. Lovely! There is a very long description of the pieces of my body that they examined. Not that interesting to most of you, so I’ll spare any more details 🙂
When I got to the histologic grade part, I realized that it said the grade was 2. It was 2… not 3 like my original biopsy! Tubule formation and pleomorphism were both still 3, but the mitotic score was only 1. That means the cell division rate was low. Slower growing! Less aggressive. I cried when I read it. Then I texted Tim and cried when I typed it to him. And that night before bedtime, when I read through it again to make certain I hadn’t misread it the first dozen times I read it, I cried again. Grade 2. This day that had started out so badly sure ended well.