… ended up pretty darn well

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 ๐Ÿ˜ฆ I have had moderate to severe hip pain since I was in my early 30’s.ย  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! ๐Ÿ˜€ 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 ๐Ÿ˜ฆ ). 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.ย  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 ๐Ÿ™‚

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.ย  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.

A day that started out badly…

Yesterday morning I woke to find a weird piece of tube in my drainage bulb. So – when they do a mastectomy, it is a fairly major surgery. It’s really an amputation. They have to remove a lot of skin and of course all your breast tissue, plus some lymph nodes.

A couple hours prior to surgery they had injected a blue dye into my breast – three shots, above where the tumor was located- in my case near the nipple. This dye, which contained radio-active isotopes, then flowed through my breast tissue and headed out into the lymphatic system. The first lymph node that it went to is called the sentinel node. That would be the first place that the cancer would spread to if it spread. So that was the one they removed during my surgery, along with the next closest one.

Sentinel Node Biopsy - Illustration @ A. D. A. M.

Sentinel Node Biopsy – Illustration @ A. D. A. M.

As I said, I was lucky in that the two nodes they removed (the sentinel node and its closest buddy) were both negative for cancer cells, so they stopped at two. If the cancer had been present, they would have taken more and tested them. They keep going until they don’t find any more cancer cells.

Regardless, here is what a mastectomy with sentinel node dissection usually ends up looking like:

U-M_mastectomy

Mine looks pretty much the same except my incision is a bit longer- it goes around to my side (because I am not doing reconstruction, the doctor wanted to be sure to remove all excess skin and fat, so he had to go a little farther under my arm to make certain it would be flat). Also, my drain tube comes out under where my breast was, not under my arm. I have an additional incision, approximately 1.5 inches long, where the top arrow in that diagram begins, going into my armpit- which is where they removed the two lymph nodes.

(for extremely graphic photos of an actual surgical procedure – see: http://emedicine.medscape.com/article/1830105-overview#a3)

So, the drain has to stay in place for at least a week or two (I am on day 9 now ๐Ÿ˜ฆ ). It is there to ensure that you do not get swelling from excess fluid that has difficulty draining out of the area due to the lymph node removal. Once the drainage amount is much lower, the drain can be removed safely. If you remove it too soon, you may get seroma (accumulation of fluid that causes swelling). Generally the fluid gets reabsorbed by your body, but if it is too much, it may need to be aspirated with a needle.

In the meantime, the suction on the drain can be quite painful. When I shift positions, especially going from a standing to a lying position or vice versae, the suction gets more severe and causes a severe ripping/burning pain inside my chest. I dread lying down at night as it’s extremely painful. I was hoping yesterday morning that when I visited the surgical office to have them examine the drainage bulb to see why there was a piece of latex tube suddenly inside it, they would remove the drain. Once your drainage is below 20 ml per day for two days, it is generally believed that it is okay to remove the drain, and I had been right at 20 ml for two days straight.

It took me a couple hours to finally get through to the surgical office. They had all-staff meetings first thing in the morning and I kept getting their answering machine until after 10 a.m. And of course, this was the day that Tim was accompanying Chris’s class on a field trip, so I knew I would have to drive myself to Lansing. This would be my first attempt at driving since the surgery.

When I finally was able to speak to a nurse and she said to come in at 11:15, I figured I had a few minutes to make some coffee and wash (can’t bathe or shower until the drain is out) before I got dressed to go. I keep my coffee in the freezer and our new fridge has the freezer at the bottom. I already mentioned the extreme searing pain I get when changing position. So, as I reached into the freezer to get out my can of coffee, because I was afraid to bend down too far, I only bent down a little way. Of course, the can came flying out of my hands, lid off, unto the kitchen floor. Luckily for me the can only had about one serving of coffee left in it, but still it was enough to spread over half of the kitchen floor and up under the fridge.

I am not allowed to do anything strenuous at all for about 6 weeks. Definitely not vacuum. Certainly can’t use a broom to sweep. And Tim was gone. ๐Ÿ˜ฆ So, yes, I carefully dragged out the vacuum and used the nozzle to suck up the coffee, using my right hand only. After putting the vacuum back in the closet, I quickly made a cup of coffee (very carefully getting the new can of coffee out and opened!) in my “one cup at a time” brewer, and rushed into the bathroom just after turning the power button on so I could wash and change for my appointment.

As I was finishing getting dressed, I heard the coffee maker beeping, signaling that my coffee was done. I smiled in anticipation as I headed into the kitchen, only to find a stream of coffee had covered the counter, ran down the cupboards, into several drawers and across the kitchen floor, leaving puddles everywhere! Yes, in my chemo brain fog of forgetfulness, I had forgotten to put the cup into the coffee maker…

I cried. I grabbed napkins and the kitchen towel and sponge to mop it up as best I could. I cried as I took out the drawer and found it full of coffee. I cried as I pulled all the items out of the drawer to rinse them off and place them in the sink. I cried as I slowly and painfully struggled on my knees to crawl around on the floor to mop it up. And then I realized I would be late for my appointment, so I cried some more.

I drove as best I could, with the pain, and the extreme wind, and arrived 15 minutes late. :/

Even so, it took them about 20 minutes to call me in. The nurse determined that the latex rubber tip in my drainage bulb was part of the bulb itself. Then she examined my incisions, and determined that it would be best if the drain stayed in for another few days, at least through the weekend. Ugh! So, my visit here had held hope that the painful sucking would be relieved and instead, I would be heading home with a newly replaced drainage bulb and be stuck with this thing for nearly another week. More distressing because the other thing I found out was that my surgeon was out at a conference and would not be returning until Thursday. This meant my post-op appointment would be moved from Tuesday to Thursday. A whole other week to wait for this drain to be removed. ๐Ÿ˜ฆ A whole other week of the dreadfully painful tearing and burning every time I move around.

One breast and two lymph nodes lighter…

20151106

Well, you can’t really tell from the photo with all the lumpy bandages and big shirt, but my left breast is now gone, along with two lymph nodes. The nodes tested negative for cancer, but they are being further tested just to make certain.

My hair is coming back pretty thickly as well. Brown now, rather than ย  ย the baby fine blonde fuzzies that first started to come in. I call it my Sluggo hair. (anyone else old enough to remember that?) I still have about 10 or so hairs that ย are longer – the ones that survived chemo. Tim said I should trim them, but they were the faithful ones that stuck with me when no others would, so I hate the idea of cutting them now ๐Ÿ˜€

It’s funny, God is generally kind with us, giving us time to get used to the changes that happen to our bodies. Even as fast as our babies grow up, the change is gradual enough to those of us who see them every day, that it is not that shocking.

Person A today = Person A yesterday + one day’s worth of gradual changes

But when you go through cancer, it is not a kind, slow change. You go from one day being normal Gina to next day being Gina with a deadly disease. It starts with the mental change first. You go from thinking about what fun trips you might take this summer to wondering how many more summers you might live to see.

You start chemo looking normal and two weeks later all your hair falls out. ย I look in the mirror now and I don’t see any of the same me that was there a few months ago. The good part is – I don’t have any of the same worries when I look in the mirror. ย I don’t look at the wrinkles that have gradually worn into my face and think bad things like I used to. I am grateful that God has allowed me to live this long. Because I realize some people don’t even make it this far. I don’t look at my plain hairless features and worry what people might think when they see me. I am glad to see color in my cheeks again and even my half eyebrows are a good sight. ๐Ÿ™‚

When I see in the mirror that I am overweight, I commit myself to losing some of that extra weight. Not because I care about how I look anymore – I have definitely learned what is important in life, and what I see in the mirror is not important. But losing weight seems more vital now because I know that being overweight gives you a higher risk of cancer. Now that is something that matters to me.

Those of you who see me regularly will notice I no longer wear any sort of head covering. I wore something on my head for a long time because I didn’t want people to stare at me or to be shocked. But you know, I’ve found they stare anyway. My mostly missing eyebrows and eyelashes along with a hat or bandana on my head – it’s that universal sign of cancer. And the thing I think now is, maybe they should look. Maybe I’ll remind them of someone they know who fought this same fight, or even remind them of their own struggle. Maybe I’ll remind them to be grateful for what they have. Or to not be so worried about their own appearance.

Changes come to us all. Some is gradual, like the slow aging of your body that leaves you eventually with wrinkles and saggy skin. And some comes quickly, like the sudden removal of a part of your body to remove cancer. It’s weird to look down and see a flat spot where a few days ago there was a breast. For the most part, others won’t notice that it’s gone. But I do think about it. How will I feel once I’ve finally recovered from the pain and healed enough to “go back to normal”? What is my new normal? What I’ve learned is that I know I’ll get used to it, just like I have with everything else.

I can now call myself cancer-free. It almost feels taboo to say that, like I might jinx myself. I’ve wanted to say it for what seems like forever, but in reality it has only been a little over 6 months. But now, after months of chemo and sickness, and finally a mastectomy, my body is cancer-free. Here’s to staying that way! ๐Ÿ˜€