The Power of Positivity

So, I met with Dr. Herman, my radiation oncologist for a pre-radiation therapy consultation last week. He told me that my response to the chemo was fabulous. I knew that my medical oncologist had said something similar, but I also knew that the lump in my breast had immediately shrunk considerably through the first 4 rounds of chemo, then although it had gotten flatter, it stayed fairly consistently the same size during the last 4 rounds. This of course, caused me concern, as many people I know had their cancer nearly completely disappear from the chemo. Which left me wondering how the doctors knew they were removing the “cancer-part” of the breast when they got to the surgery. Previous mammograms? Best guess?

Dr. Herman explained it. The large lump left in my breast after chemo was mostly scar tissue. According to my pathology report, the actual cancer that was left at the time of my mastectomy only measured 7 mm. If you remember, my lump when discovered was 4.5 X 5.5 cm. Large enough, even though it hadn’t spread outside my breast, to make it a Stage 2 just due to sheer size. According to the doctor, that is a phenomenal reduction from chemo for lobular cancer. And he explained that most of the lump that could still be felt after chemo was just scar tissue. Wow. And – yay!

They set me up for a “simulation” in which I lay on a moveable bed (similar to the MRI, but this time on my back) and they did all sorts of measurements and simulations. I spent an hour laying on this hard surface with my left arm crooked above my head, in excruciating shoulder and armpit pain, while they put electrical tape on me, marked me with a permanent marker, moved me in and out of the x-ray chamber over and over, and then finally tattooed little dots on me in 5 different places. This is to ensure that each time I come in for the radiation treatment, I am laying in the exact same way, so that the radiation goes where it’s supposed to. So, after swearing I would never get a nasty tattoo, I now have 5 of them, permanent ones. :/ Ah, well, so goes life.

I could refuse radiation if I wanted to, but since I am a worrier, I chose to continue with it. The worst case scenario without radiation therapy would be an approximate 8% chance of cancer recurring in what is left of the tissue and scar around my breast, although he said with my response to the chemo, he felt that chance was much lower for me than that worst case. By having the radiation therapy, it would reduce my chance of recurrence to less than 1%. For me, that big of a reduction is worth the side effects and possible issues of having radiation.

Each time something like this is revealed to me – like the Grade being downgraded to a 2, and this realization that what I thought was still cancer not responding to chemo, was instead simply scar tissue and that my response to chemo had been phenomenal – these things have given me that extra boost of positivity that I need to keep moving forward to feeling more human.

Quite a few months ago, I ran into my friend Ellen. She also had breast cancer, 11 years ago. I remember praying for her and worrying about her and her family, and yet I never thought much about how she always walked around with a smile on her face. I just figured maybe she had a low stage cancer, and a high chance of cure, so she didn’t have to worry. When we talked that day a few months ago, she told me that she actually was diagnosed at Stage 3. That she had now been cancer free for 11 years and had never once considered what her family would do without her.

She said that she set goals. Her first goal was to see her son graduate high school. She wasn’t sure at the time (as any cancer patient can tell you) that she would make it that far, but she decided she would never think about what would happen if she didn’t. She simply set out to live at least that long. He graduated a couple years ago, and she told me she set another goal at that time – to see her son graduate from college. She said that once that happened, she would set out to see him happily married, then grandchildren, and so on. All with a smile on her face and encouragement for others along the way.

I’ve mentioned my friend Bev. She wanted to be there for her boys. She is now 20 years cancer-free.

At work, I have a co-worker who always wears a head band or ribbon around her head. It never occurred to me why until one day, sick from chemo and proudly displaying my bald head “badge of honor”, I ran into her in the stairway and she told me her story. She’d been diagnosed with an aggressive brain tumor when she was fairly newly married. Her husband lived across the country for his job temporarily, and they missed each other terribly.

The doctors put her into a trial cancer treatment, in which they took a sample from the cancerous tumor and created “antibodies” for it, which they then injected into her to fight the cancer. She also had radiation treatment to her brain, which left her with permanent hair loss in a band around her head (hair ribbon mystery solved!). Her husband moved home to help her through the treatments and she said she was never happier than having him there with her finally.

And of all the people in this research trial- she was the only one who was cured. Completely. She has been cancer free now for 13 or 14 years (she can’t remember without looking it up- she said she had so stopped worrying about cancer that she had actually forgotten how long ago it was).  The doctors attributed it to her attitude. They even encouraged her to write a book to help others- about how to remain happy and positive while fighting cancer. She told me that she was just so happy to be with her husband all the time that she couldn’t help but be positive.

There is a great power in positivity. I am starting to feel it more and more. I have funky short hair, but I have hair again now. My shoulder and chest aches, but I’m alive. I am tired all the time, but I am alive. I am alive!

 

 

 

The human body is a funny thing

When my hair first started to grow back in after the chemo, it was very fine and blonde, like baby hair. Then it felt wiry for a few weeks, like it would be curly. As it continued, it was suddenly dark, looking like my normal dark brown, and it was sticking straight upon my head (the Sluggo look). And then one day I looked in the mirror and realized it was gray with white thrown in there for good measure. :/

It is finally long enough that I can grasp it with the tips of my (no longer numb) fingertips. Depending on the lighting by the mirror I look in, the color ranges from  grayish brown (with white) to all gray (with white). It’s okay. I have to say I am grateful to have hair at this point,  especially with the colder weather now.

I have this Spock thing going on with my eyebrows though. I hadn’t realized how much of my Brooke Shields eyebrows I had lost until they started to grow back in. The direction of growth was from the center outward, so I have these abbreviated (Spock-like) eyebrows. Although mine don’t point up at the ends quite as much 😀 Neither do my ears.

IMG_1682 spock

Other hair growth stories: My facial hair is incredibly fuzzy and long, and it happened all of a sudden. One day I looked in the mirror and bam! this (you’ll need to click on the photo to see it closer-up):

image

Scary! And at the bottom center of that photo, you can see one very long white hair. That’s my buddy. It grows at abnormal rates and I’ve had it as long as I can remember. And yes, it was one of the first of my hairs to grow back. (oh, yay!).

The last hair growth story involves my nose. Do you remember me sharing that chemo causes you to lose all the hair in your nasal passages so that your nose runs all the time (and suddenly)? Well, I had one hair in my nose that survived. ONE. Which one? Of course, it was the extra long gray one that hangs out of my nose and tickles it, so that I have to “Major Burns” it regularly (M*A*S*H fans, anyone?).

The good news is that my hair has decided to start laying down a little- so not as much sticking straight up, it almost even appears to have parted itself.

The hard part of recovering from my mastectomy has been not feeling like myself. I struggle with anxiety normally (the generalized kind, so don’t ask me why I feel worried or sad, because I can’t pin it down), and recovery from surgery has made it worse.  It’s not like I’m sad about losing my breast, although I am still shocked sometimes when I look down and realize it’s not there.

The nerve and incision pain certainly isn’t helping. It’s getting better all the time, but is still constantly there. That can really wear you down, I know. The nerve pain, as I mentioned in one of my previous posts, is the weirdest. I swallow cold water and I can feel it immediately in my chest- it triggers my nerves there and causes great discomfort. 😦  I still have the tingling pain on the back of my arm. And of course the incisions and all the areas underneath hurt with the healing kind of pain – tenderness, aching, etc.

I also have muscle spasms in my chest. Not sure how to explain them other than I get a sudden quivering in my chest muscle. It doesn’t last long, but it is a reminder that things aren’t healed yet. And of course, there’s the stiffness that can only be relieved over time by doing stretching exercises. The exercises are working, but cause my entire shoulder to ache badly for a long time afterward.

When I met with the surgeon a few weeks ago he was happy with how much I’d healed. Unfortunately, part of that healing involved the much complained about drain tube in my chest. Because it had been in there for 15 days after the surgery, it had healed into my chest… To the point where when he pulled it out, which supposedly should only cause a weird sliding feeling, instead it HURT! It took a few days after that to start to feel like I was healing again. But I was so grateful to have that thing removed.

At the time, he discussed reconstruction, and I reminded him again that I wouldn’t be having that done. He then said that the incision would heal nice and flat which would allow me to wear a prosthesis comfortably. It hit me a little while later that in most people’s minds, those are the only two options. Reconstruction or prosthesis. And it also occurred to me that I don’t believe I will want to wear a prosthesis either. I am really okay with my breast missing. If others aren’t, well that’s their problem. Just like I finally concluded with my baldness (with some help from my friend, Ellen Z) – if I have to deal with looking like this, why hide it from others? Maybe it will remind them 1) to do breast self-exams (see what-ifs for my opinion on that), 2) to be more thoughtful and have empathy for others (you never know what someone is going through), 3) there is no normal (accept others for who they are underneath, not what they look like).

Regardless, I know that all of these things – the constant pain, the fatigue, the not being able to do normal things – contribute to my anxiety and sadness.  But what heartens me are things like reading my daughter’s letter to Santa, asking for Mom’s cancer to be cured. And like visiting the school with Tim to pick up the kids and having many children call out to me as I stand there slightly self-conscious about my looks – “We’re praying for you!”, “I hope you feel better!” Kids I don’t even recognize. But they all know me 🙂  Because I’m Chris’s mom, Reagan’s mom, Andy’s mom. And every one of those classrooms prays for me in their morning prayers.

Wow! Very powerful to have the beautiful hearts of all these little children, caring about me that much! How can I stay sad for long?