Last chemotherapy treatment

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I had my last chemotherapy treatment today. I made it through 20 long weeks! The staff and my nurses at Epic Care were wonderful, as always. As I finished my infusion they came out with pompoms and an award and gave me a cheer. It was embarrassing, but fun! The woman sitting next to me today was having her very first chemo infusion. She had the same disease, and the same chemo regimen. I was really happy to tell her that it was nowhere near as bad as I had feared it would be. The drugs are good. Take them and you won’t suffer from the unremitting nausea and vomiting chemo used to be known for. She had her concerns and had done her research, and had a good plan. Then I told her how wonderful the staff at the clinic were, and how they made chemo actually pleasant. For some reason everybody, including the staff, laughs when I say that. But really, the infusion is not painful or uncomfortable in itself. For me it was a time to relax, read, nap, be taken care of.

I expected to dance out of my last chemo and start celebrating immediately. I was given the all clear to enjoy some foods that have been denied me for awhile, and I considered that I needed to go out to a couple of restaurants and do that. I guess I forgot that on the last day of chemo I actually received chemo! It decided to remind me that it wasn’t all pleasant. Very, very tired today, a little achey, even a little nauseous. My brain has turned to complete mush. I can’t tell you how many times I have walked out to the other room today, only to say, “Why am I here?” once I got there. But I know by tomorrow I will be feeling better for the most part. In a couple of days I am starting a cleanse to get all the toxins out of my body. The happy dance is coming soon.

I was glad to have a woman having her first chemo sitting next to me this morning. If there is one thing I want to come out of my experience, it is to be able to say to others who are heading into it, “Don’t be afraid.” Yes, there are side effects to chemo, but for most of us, most of the time, they are manageable. Life goes on, with a few extra naps, and a few less food choices.

I had ordered a new necklace through the internet, and it just arrived today. It is a mommy and baby elephant. Have I mentioned how much I love elephants? Probably not. Well, now you know. Better yet, it is made of dragonglass! More commonly known as obsidian this side of the Seven Kingdoms, dragonglass kills the Others, the White Walkers who are coming to destroy the world. Interestingly, it created them as well, as when it was plunged into the hearts of humans that is what they transformed into. In the opening episode of this most recent series, those who were reading over Sam’s shoulder also discovered that it is a cure for greyscale, a fatal disease in which all of a man’s (or woman’s, or child’s) skin is turned to stone. I was planning on slaying a few demons and being healed, so a little bit of dragonglass coming along right now can’t hurt, can it?

So here is my current plan. I am going to spend every day marking how much better I feel than the day before. In between chemo and radiation, I hope to be able to recapture just a little bit of strength in my muscles. I am going to mark each and every way I feel better. And I will spend a little time every day studying my hair to see how it is growing. Already I have a blanket of peach fuzz on my head, as you can see in the above picture, some of it long enough to make little drifts over the top of the temples of my glasses! I have gotten to really hate scarves and head covers, so I am anxious to never have to wear them again!

When I get to radiation, since I have to be there every single day, I plan to take my laptop and go to a coffee shop afterwards. I don’t have LTE on my laptop, so I won’t be tempted by Facebook. I will have to concentrate on Word, and the two books I have swirling around in my head waiting to take form on the page. If you are one of my praying friends, or one who sends puffs of positive energy, I’d appreciate that now. I’m not sure which book to concentrate on first, and while they are swirling they are not fully formed. I need all the help I can get to bring them to birth. I am also taking recommendations for coffee shops in the Dublin area, since that is where I am having radiation therapy.

Meanwhile, as best I can, I will wait and see. I will try to live in each moment rather than in fear of the future. There is one thing I know, and that is that life can turn on a dime. You can wake up one morning and when you go to bed that night your entire world will have changed. Sometimes, those changes are even for good. I believe in those things. I’ve had a little voice in the back of my head that has said several times, “Something really good is going to happen.” I generally shush it, calling it wishful thinking, the fantasies of someone right before they drown maybe. But I’m going to listen instead, embrace it, be open to it. However big or however small, I am certain that something really good is going to happen, and I will be grateful.

Thank you all for your support through this part of my journey. It means more than you could know. I love you all.

Lots of feels

One of my blogs is about to disappear, and in the interest of saving it I am coping some of my previous posts into this blog. This post was from July 6, 2015.

It is 6:30 in the morning on my day off work, and I am here, awake. I have a lot of feelings inside me and I am sitting here with tears in my throat and in my eyes, longing just to be able to write my feelings down and push them off into the world. Like the words from the Anna Nalick song, “2 a.m. and I’m still awake, writing a song. If I get it all down on paper it’s no longer inside of me, threatening the life it belongs to.” But maybe I just really don’t have the courage. One day I swear I am going to write my novel so I can say all the things I cannot say, turn loose all the feelings inside of me.Half of the feelings I feel are vapors in the wind anyway.

As I sat here at my desk, I watched a cloud outside my window. For a moment it was the stunningly clear face of a pitbull terrier. But in seconds it morphed, first into a kitty, and then on to several indistinct stages on its way to becoming the blank cloudbank that it is at this moment. And that happens so often with problems. You have a dagger in the heart, but then it dissolves and is gone, unless you happened to put it into writing or other communication where it becomes immortalized, or kind of. For me, writing and getting things out is cathartic, but the problem is that when you get things outside yourself sometimes they take up residence in others, and become things totally other, and totally beyond your control at all. Things that are minor can come to define you.The other thing about writing is that often it helps me to figure out just exactly what it is that is hurting. Like right now.

The immediate cause of my distress is that my daughter, who is 18 weeks pregnant, was experiencing anxiety this morning at 4-something. I woke up. Presumably she has gone to sleep and I am still awake. This anxiety, this problem, will probably dissolve when the winds shift. But in me it stirs something far deeper. Whether large or small, my child is suffering, and I am powerless to alleviate the suffering. I can, and do, talk my head off in an attempt to fix things, but honestly sometimes I know that just makes it worse. That’s the other dangerous thing about words. For some reason the same words can mean completely different things to other people. She is anxious, so in an attempt to alleviate the anxiety, I employ the analytical mode, trying to explain why the problem is not quite as bad as it feels, and/or how to avoid problems in the future. This works well for me, but my daughter is in emotional mode, and she absorbs those words completely differently, internalizes them as criticism, which they are not intended to be.Emotions. Sometimes you just have to get control of them.

I remember in the second year after Michaela was kidnapped, I just felt angry, and it finally dawned on me that my anger was nothing more than sorrow that I had turned inside out and thrown outside myself because that was easier than feeling the sorrow. That was a big thing. But the same thing happens with the little things. We feel pierced by that dagger, which would probably dissolve in a minute, an hour, a day, unless we let that sorrow become anger and let it out into the world where it will inevitably cause more hurt. I personally have counted the cost and decided it is not worth it. That means I end up with a lot of feelings that get bottled up inside. Perhaps I need to find another means to transform and express them, through something more positive than getting angry. There are a lot of things that never ever get resolved, because I don’t speak of them. In the end I guess I don’t trust that they would get resolved if I did.

This child, the one whose anxiety woke me in the early hours today, was born five years after Michaela was kidnapped. One of my strong memories is from when she was a little baby, and she was crying. I picked her up and held her and said, “It’s okay. Mommy is here. Mommy will take care of you.” I was reassuring her from my heart with every intention of making everything right, of keeping her safe and protected and not letting anything hurt her. But in that moment I was flooded with the knowledge of the truth, that this was a lie. It was a promise I could not make. I had said the same sort of thing to Michaela, but in the end I had not been able to protect her. She suffered the most brutal fear, grief and pain, and there was not a single goddamned frickin thing I was able to do to prevent that, or to save her from it once she was in its clutches. I completely and totally failed her.

And I have completely and totally failed all my children. It hasn’t been as dramatic as it has been with Michaela. The daggers that have pierced them have been the kind that mostly dissolve in time. But they have all suffered grief and sorrow, and there is not anything I can do about it. I have made midnight trips to the grocery store for chocolate, taken them for manicures, sat and listened, hugged and cried. But the only way I could actually have prevented my children from being hurt was if I had taught them not to love. Jobs, money, those things all can cause stress, but only love can pierce the heart, and it can pierce deep and hard and leave shards that don’t ever completely go away. I know, because I have them myself.

My daughter and her husband, they are happy and excited about the baby they are having. But they have feelings inside them that perhaps they don’t even understand. Do they understand the huge vulnerability they are being drawn into? They are both smart kids, and they are both very self-aware, smart, imaginative and creative, so maybe they do. Or maybe it is just a vague sense of unease. I know that as they have thought about their child, they have been drawn to look back on their own childhoods. In doing so, they have encountered the things that hurt them. They think, they hope, that these things will be different for their child, that their son won’t encounter the cruelty of other kids, for example. But somewhere deep inside, as they consider their own hurts, they may be coming to realize that those things are going to hurt even more if they happen to their child than they did when they happened to them. I looked it up this morning, that quote that I just kind of know. I discovered it has a source, author Elizabeth Stone. It is, “Making the decision to have a child — it is momentous. It is to decide forever to have your heart go walking around outside your body.”

Well, I guess I am kind of placing my own thing into other people’s minds here. I think it is valid to a point. But really it’s my own point. For me, it is magnified, because it triggers that deep sorrow of not being able to save Michaela from suffering. But the fact is, I can’t save any of my children. I can’t make any of them happy. I can’t protect any of them from hurt. I can just hope that they have the emotional wisdom to live well.

To you, Michaela, I just want to say that am so sorry that I was not able to protect you from harm, that I was not able to save you. Wherever you have been, whatever you have been through, I just hope that you have been able to feel always that love that is beyond life and death, there in your heart, forever.

Breast Cancer Journey: Bye Bye Bye Booby Bye Bye

So since I am old and a lot of you are young, I guess I need to clarify that you are supposed to hear Janis Joplin singing the title line of this blog entry. But yes, I am indeed going to be 15825811_10211421048947582_6925963522546962115_nsaying goodbye to one of my boobies next week. I am a little apprehensive, because it is surgery and all, but I have never really liked my boobs. They are just too cumbersome. What upsets me most is that they are removing one and leaving the other, which will be the worst of both worlds, at least for awhile. Eventually I will have a new mostly matching set, smaller and happier boobs, although that will take another, much more complicated surgery a couple of months later.

It has been a long wait for this surgery, and this has not been to the benefit of my mental health. I went through the anxious stage, but I guess that was too much for my brain to handle, so I eventually slid into my sort of familiar land of denial of feelings. In that place, I have become dull. I have withdrawn from most physical contact with the world, and when I do have contact I just feel as though I am not completely there. I don’t engage. I listen and contribute some to the conversation, but I feel like I am somewhere else. People will ask if I am okay, or just wonder. Yes, I say, I am okay. And it is true: I am okay. I am just not here. I am flat. Like one side of my chest is going to be after next week.

I have also realized that I am having a hard time seeing past all this. It is basically going to take up much of the next few months. There is surgery, then healing, then likely radiation, and after that the reconstructive surgery. Honestly if they were taking both boobs I might forego that part, but it is standard part of the treatment now so I am going to do it. That will be a far more complicated surgery since it will be both boobs, plus they are going to take the material to make the new boob from my belly, so three surgical sites, with three completely different procedures in each, and a long surgery I imagine, since they have to reconnect blood vessels to the transplanted tissue. But the implants, I am told, don’t last forever. You have to get them replaced every ten years or so. No thanks!

The recovery from the second surgery will take a month or so anyway. And they are still not sure what other treatment will be in the future. Possibility of chemo, likelihood of hormone treatments since my tumor is both estrogen and progesterone receptor positive. So surgery, healing, radiation, maybe nine or ten weeks. Second surgery, healing, another four weeks. Honestly I guess it could all be finished in three or four months, and yet it feels like an eternity, and I am having a hard time seeing the other side.

I was in the awkward position of actually looking for a job when all this began. And I kept looking for one, although I knew that even though the law doesn’t require me to, I would have to tell a prospective employer that I would be having to take off large chunks of time immediately after hire, and nobody is going to hire me under those circumstances. So the job search is going to be off the table for awhile. Meanwhile, there are a few things I could be doing to prepare for my future earning potential. I do have two books that are in progress in one way or another. If worse came to worst I could probably self publish them and make at least a little bit of money. I know that I am really, really bad at self promotion, however. I’m not sure what it is that keeps me from working on them, but I think part of it is just thinking that it is impossible for me to be A Writer. It is what I always intended to be, from first grade on, and here I am Still Waiting To Become What I Am Meant to Be. Oh, I have used my skills to make a living, for certain, mostly writing legal briefs and motions, letters and declarations. Fun, but not what I had in mind. I wish someone would just offer me a publishing contract and give me a deadline which would make me Do Something. But since I haven’t even marketed my ideas, that’s not likely to happen. Meanwhile I sit paralysed.

I also enrolled in a Real Estate course awhile back, which I could work on and complete, and which would give me a little extra padding to my resume. I have been a resident property manager in my life and I am a paralegal, so add those three together and it could be helpful in getting a job. Who knows? I could even make it rich selling real estate! But I’m not doing that either. Instead I am watching Netflix and playing Candy Crush and visiting on Facebook.

It’s not like a don’t think there is going to be a future. The thought of dying hasn’t actually entered my mind. I know it is a possibility, but it is a statistically remote possibility. It is just a battle to fight and move on to the other side. On the other side, I will be better, and stronger. I believe that. But all I can see right now is the mountain in front of me.

So, benefits of cancer? Yes, I have experienced some. Most notable has been weight loss, and I don’t mean unhealthy weight loss because I have cancer. Since my diagnosis I have returned to a vegan diet, and a healthy vegan diet. I have lost fifteen pounds since November 30th, not bad for the Christmas season. But the most amazing thing is that my appetite has normalized. I am not certain what to credit this to. I did quit drinking diet sodas and I wondered if perhaps it was true what all those annoying people have always said, that the artificial sweetness of the diet soda triggers your appetite. And I drank a lot of diet soda. But these days, I just don’t have that insatiable desire for food that I used to. Being a vegan has helped with unconscious eating patterns. Over the holidays my kitchen counter was sometimes filled with cookies and pies, and had I not been a vegan I might have just unconsciously grabbed them and eaten them. But because I was a vegan, I couldn’t, and more to the point, I didn’t want to. I feel an honest aversion to the whole idea of eating animal products. On the other hand, there was a box of vegan cupcakes I got for my birthday that I didn’t eat either. I had a couple of bites of one, and it was just sickeningly sweet so I never touched them again.

So I find myself thinking, oh, this is what it’s like to be normal? I don’t think about food all the time. When I am hungry I look for something to fill the hunger and I am filled pretty easily. I am losing weight. I have diabetes, and at last check my A1C had gone down to 5.9, which was down from 6.5, which was from 7.5, and my random glucose in my pre-op test was 88. Win, win, win. Weight loss, new boobs, removal of abdominal fat to build my new boob. I am finally going to be beautiful! Okay, maybe not beautiful, but I will have the opportunity to be fitter than I ever have been. Do I have cancer to thank for this? At least in part. Better health through cancer. It was that wake up call, I guess. Take this stuff seriously.

Surgery is next Wednesday, January 11th. I appreciate your prayers. I will get back to you afterwards and let you know how it goes. Thank you as always for your support.