Radiation – Boob Gone Rogue

Wednesday, April 17 – I shed a little tear, and wallow in self-pity

I figured any changes to my right breast from radiation would happen in the first 6 months, as that is the basic recovery time for radiation treatment. When the initial six months passed with just some minor changes to my breast I thought to myself, I could live with this, I think. Now it seems I notice a new change weekly. As I was getting ready for bed, I yet again noticed how much smaller, my right breast is from my left breast. It continues to shrink a little more each passing week. I miss the weight of my breasts. Evidently, I had super dense breast tissue, which is why they had such a firm weight to them. Moreover, they still feel so foreign to me. Even the left breast, which is not nearly as numb as the right breast, feels strange, like it is no longer a part of my body. Lefty has small areas of numbness around the scar tissue from the reduction surgery, and I would think having more sensation in that breast would help in feeling like she is still a part of my own body. Alas, not all these positives about Lefty help. Lefty is a good cup size or more larger then my poor traumatized right breast.

As I look at them and contemplate the last 18 months, I wonder about all the decisions made along the way. Should I have opted for a mastectomy and forgone radiation treatment? I could have had full reconstruction then, and maybe my breasts would be closer to sisters rather than distant cousins. I would not be missing a chunk of breast tissue that creates the dimple in my left breast giving it a “W” look. I might not have to face a possible lifetime of tenderness and hypersensitivity on my right breast, and the little third boob off to the side, where according to Robert, the plastic surgeon and a million feet of drainage tube curled in there. I would not now be shoving two of the pads that came with my Knix tank bras into the right cup to try to make my breasts look even and prevent Lefty from pulling my tops askew due to the size discrepancy.

All this second guessing and wondering if I have the courage to face another surgery to try and fix this brings a tear or two (ok, maybe ten), to my eye. Then my little self-doubt demon starts running amok in my brain and reaches down to my heart with little jabs – you will never be in proportion again. You will never lose the weight you so desperately want to reduce. You will never feel sexy again. You will never be brave enough to be intimate with your husband. Then my self-pity pixie set in, right behind my eyes, and started pushing those damn tears out.

I fecking survived this betrayal of my body; it turned against me and tried to kill me, why do I still have problems with the battle scars? Why am I having the hardest time reconciling my new shape and being ok with my body the way it looks now? I would think I would have a harder time dealing with my diminished mental abilities. As frustrating as they are, I feel like I accept these new limitations to my ability to multitask, the speed at which I can figure out complex problems as well as my physical speed in tasks with less emotional effort.

I should be celebrating my battle scars. I should be proud that even though my boobs no longer look the same, are different sizes from one another, and one has minimal ability to feel touching sensation that I still have my breasts. I survived this battle, kicked ass in this battle. It tried to take me down, but I survived. Chemo – bring it on, surgery could not completely change the shape of my body, and radiation, sure, you have wrought changes I am not happy with, but I am alive and cancer free. So dammit you stupid demon and pixie, go back to your hidey-holes in my psyche, I am ready to be proud of these damn battle scars. No more feeling disfigured. No more feeling I am unlovable because of my new imperfections. No second-guessing the battle waged. I won, that is all that counts.

I am taking another stand on my road to where ever my new center resides. I am not there yet, but I am finding my strength and will to get me there. I will find my complete inner peace, where I can work with my dragon, demon and pixie in harmony. So we can heal the wounds that are still open, not continue to scrape and rub at them, keeping them raw and weeping.

I fucking beat a badass cancer that thought it had the best of me; I have the tools to heal from the battle.

Life is facing my demons

Thursday September 28 – Last appointments scheduled

Dr. Sikaria had said I needed an echo-cardiogram as well as a port placed before chemo started, and we needed to be scheduled for chemo school. Of course, both of these items need pre-approval from the insurance company. Pre-approvals went very fast; today, we finalized these last two appointments. I also had read I should get a dental check-up and cleaning before starting chemo, and if I needed my annual well check, I need to get that done before chemo as well, as that will be thrown off by the chemo.

Echo and my annual exam are scheduled for next Tuesday, The emergency dental appointment was completed yesterday (I received a clean bill of health along with some high-fluoride toothpaste to use during chemo to help prevent erosion), and the port placement is planned for Thursday, October 5th. They are squeezing me in as Friday was already fully planned, and we would be out of town on Saturday.

When I heard about the washing restrictions for the port, starting with the first three days—no showering—followed by a week when you can get it wet, but not directly, and it needs to be kept as dry as possible. After two more weeks of no direct water on the incision site and me with my normally worn curly hair, I was wondering how in the heck I was going to manage this. That was when I decided I needed to cut it off now.

I have always been whimsical about my hair. This would be why it now sported blue, green, hot pink, and purple colors in the underlayers. I have always admired those women who shaved their heads, and I figured once my hair was mostly silver/white, I would join a Saint Baldrick’s Head Shave fundraiser and shave it all off to start over and embrace the white. My husband was never very keen on that idea, but I always kept this in my mind.

So I called my stylist, and they agreed to cut my hair – very short, on Saturday. Below are before pictures….

Life is “hacking” of my hair

Tuesday September 26 – Support Group

We went to our support group meetings. My husband went to his room at the Cancer Wellness Community, and I went to mine. There were about 14 of us total in my group. There was one other “new” person besides me. The group leader had the “veterans” introduce themselves and briefly describe their diagnosis and treatments. Then it was our turn, the two new ones to the group.

There were women there in various stages of hair regrowth or loss, and one gal who had not been to the group in 6 months and they were surprised to see her back. Once you join a group, they ask you to continue going until 18 months after your last treatment, whatever it may be.

As the women took turns introducing themselves, it became evident that their original diagnosis and treatment plans all changed to add additional therapy to their original plan. Those who planned lumpectomy ended up with full mastectomy or even double mastectomy, and so on. One woman now battles lymphedema. This happens randomly when the lymph system stops cycling lymph in that area due to trauma from surgery. This builds up in the surrounding tissue, causing swelling. There is no cure, but some things can be done to help deal with the swelling and discomfort.

I was asked about my thyroid cancer and told them about my experience with that briefly. And around the circle, the discussion kept going, bone pain from Neulasta, nerve pain from the chemo setting in after the second to last round. Being tired, ready for it to finally end. The astonishment at how long I have been scheduled to receive chemo – 5 months. Most of them, it’s been two, maybe 3 months of chemo. Even the beautiful woman to my right said she was diagnosed with the same thing as me. She only had 6 cycles of chemo, three of the drugs that I will be having. She had to have a mastectomy. I don’t know who is more worried now, her or me.

Every one of them has opted for reconstruction.

One was talking about how happy she is to get her eyelashes back; they are finally starting to grow. At this point, about half an inch of hair had regrown on her head.

As I sat there with all my curly red hair, and my fun, blue, green, pink, and purple peeking out from underneath, I realized I love my boobs, and I didn’t want anyone taking them from me. If they do have to go so I can live, I think I may want reconstruction. And all of these women have terrified me. What is going to happen to me? Can I do this? I have always thought of myself as strong, and I can take this on, but oh my God, I can’t do this. I can’t cut off my breasts; I can’t lose my eyelashes! I’m going to lose my fucking eyelashes, my beautiful, thick, long dark lashes that frame my blue eyes and help hide my hooded eyes so they don’t look small. Take my hair, take my eyebrows, and take all my body hair, but I can’t lose my eyelashes….

I don’t think they notice how withdrawn I’ve become during all their talking.
On it goes; they talk about recurrence after being done for 6 months, waking up from surgery, finding the worst-case scenario has happened, scars that have to be repaired, additional surgeries, mouth sores, bone pain, and losing your eyelashes. I can’t do this. Just sit here, be calm, and don’t show them how your insides have turned to jelly. All these women have survived; you can do this. Oh my god, I can’t do this.

The group is done. I smile and thank those who come to say goodbye; I grab my bag and sweater and head to the front to meet my husband. My husband is still in his meeting room. I can hear them talking; he is talking. He is talking to one, maybe two other people, I think. He’s connecting; they are sharing. I, on the other hand, am a quivering mass of overwhelming anxiety, fear, and doubt, and I am going to lose my damn eyelashes.

He finally comes out. He is still talking with one of the guys from his group. He is bonding; I am falling apart. We’re being asked to exit the building so they can lock up. My husband gets a phone number; he’s making connections. This man who thought he would not fit in would not belong is belonging.

Goodbyes are exchanged, and we head to our car. He’s holding my hand, he’s telling me about his group. I just keep nodding, uh-huh, yeah. Then he asks me how I am. My lungs don’t work, all that gray and red fear and anxiety is no longer a tight little ball in the corner of my gut, it’s free, flying throughout my body, my knees want to buckle, my ears buzz, my heart feels as if it has stopped. All this starts to leak out of my eyes. I squeeze them shut, and all I can do is shake my head. No, no, I am not alright. He asks me what is wrong, all I can say is “It’s just too much, it’s too much, I can’t do this yet, it’s too much….” and I crumble and fall to pieces. He’s holding me and saying he’s so sorry. He didn’t mean to break me. He made me do this, and I am broken.

I am so lost. I don’t know how to pull this together right now. I don’t know how to stop the falling apart. It was the damn eyelashes… He’s holding me and telling me we can do this. It doesn’t matter what I physically lose in this process, we will survive this, and be stronger on the other side. He’s getting me to talk, what was it that was so overwhelming? It was all of it. I realize I am in mourning. I am mourning the loss of my life as I have known it to this point. I am mourning the loss of my security, knowing I had beat cancer, I would live a long life watching my family grow, watching our grandson grow, learn, fall in love, be heartbroken fall in love again, have a family. Grow old with my husband. Now all that could be gone. Uncertainty, tests, and anxiety for years until I know this is beat yet again. Mourning the loss of my breasts, which I realized in a moment in that room that I love. I love that I have nursed three children from them and that my husband knows how to touch them just right. I love their weight and shape. How they look in my clothes. I am morning, and they will forever be changed from this. If I only have a lumpectomy, it will change one, and the other will be changed to match.

I am mourning the loss of my innocence in dealing with cancer at this magnitude. I am mourning that I have to know all these things about chemo, and nutrition and lymph nodes, losing my hair, and regrowing eyelashes, dry mouth, nausea, bone pain, exhaustion, battling mouth sores, and radiation burns and surgery, scar tissue, infections, and lymphedema…

Life is broken, life is sad, life has kicked me when I was down.