Breast Cancer Journey: Stuff Gets Real

img_1406I had a second surgery this past week. Some of the skin they left after my mastectomy had died and had to be removed. After the surgery was over I posted on Facebook, “I had a great time.” The sad thing is, that was true. It says something about your life when surgery is the highlight of your day. But they numbed me. They sedated me. They all took care of me, including my husband. They made sure I was not in pain and that I did not get lost.

In contrast, that morning I had met with the medical oncologist for the first time. He explained to me that my cancer right now is Stage IIIC. That is the last stage before Stage IV, which is metastatic breast cancer, meaning cancer that has spread to other organs. And they haven’t ruled that out either. The oncologist also commented that I’d had a completely clear mammogram in 2014, and then in October 2015 they find a cancer that turns out to have already advanced to IIIC.  It is lobular cancer, which doctors keep saying is “tricky,” first because it apparently grows in sheets so is hard to find, and also, according to the oncologist, if it returns it returns aggressively. Therefore, we are going to have to use the biggest guns available: a total of 20 weeks of chemotherapy, followed by probably six weeks of radiation, followed by five years of hormone therapy. And the chemo? It’s not some new, gentle chemo that has been developed in recent years. It’s the stuff that causes you to lose your hair, suffer nausea, mouth sores, bone pain. The worst of it, a combination that includes “the red devil,” will be given for the first eight weeks. I think the following 12 weeks are a little easier. I also get steroids. So I think this means I get to be bald and bloated, although ultimately chemo generally results in a dramatic weight loss.

It will probably be four weeks until I start the chemo, because I have to heal properly from my surgeries. I also have to have an echocardiogram to make sure my heart is strong enough for chemo, and the PET scan to make sure there isn’t any other cancer hiding anywhere.

So how am I doing? I am going more than a little stir crazy with the recovery from the surgery. I still have a drain, which prevents me from being able to do so many things, including just rolling around in bed at night and wearing a bra.  I remain relatively calm, however. I’ve done only a little online research. It talks in terms of 5-year and 10-year survival rates, and I got a little choked up over that, because I was able to think about how old my grandson would be in five or ten years, and there was so much more of his life I wanted to see. But I spoke to a friend yesterday whose mother in law had Stage III breast cancer, and she just celebrated 20 years cancer free. And that is what I intend to do. I am not looking forward to the treatments ahead, but I got through the surgery and I will get through this. My faith stumbles along, one day at a time, and I am stumbling with it.

I was reading some old journal entries this morning, and I read the one I wrote right after my repeat mammogram, when I started to suspect something might be wrong. I was reading a YA book at the time, Afterward by Jennifer Mathieu, and I wrote a quote from it in my journal: “I’m not going to try to reduce the weight of your burden, but I’m going to help you grow strong enough to carry it.” Yes, that is what I believe. That is what I feel.

I have that faith for my own journey. But if there is an area where I struggle, it is my ability to provide for my family, both financially and emotionally. Why is it so much more difficult to muster faith for that? Nothing new, though. It has always been this way. And yet always, somehow, we have survived. I have been intending for years to write, have two books swirling in my mind and word processing programs, but I have a paralysis because I am afraid that they will amount to nothing. Silly, I know, because in the process what does the outcome really matter? God has given me grace periods in which to pursue this, and has extended them again and again. I pray that what he has given me will not go to waste. Also written in my journal were these words:

“And though the Lord give you the bread of adversity and the waters of affliction, yet your Teacher will not hide himself anymore, but your eyes shall see your Teacher. And your ears shall hear a word behind you saying, ‘This is the way, walk in it,’ when you turn to the right or when you turn to the left…. And he will give rain for the seed with wich you sow the ground, and bread, the produce of the ground, which will be rich and plenteous.” Isaiah 30:20-23

But I noted also the verse right before it: “He will surely be gracious to you at the sound of your cry. As soon as he hears it, he answers you.” This was one of the words my pastor gave me for the journey. He talked about Peter walking on the water, but later elaborated that Jesus had only stopped to allow that because the disciples had been afraid and had called out to him for help.

So, Lord, here I am. I am calling out to you! I am afraid. Be with me. You don’t have to do it all for me, but help me to do it. Set my feet in the right paths, show me the way, and let me walk in it.

Notes from the wilderness

imageHello world. I have left my nest of pillows and blankets on the couch and I am sitting at the kitchen table. It’s kind of cold here, shivery. But it feels a little more human like. I’m getting tired of recovery from surgery. No, a lot tired of it. It’s kind of depressing actually.

And perhaps this is part of why I am where I am spiritually, which is in the Wilderness. There have been times in my life when I can read the Bible, and say amen, when I can find passages that feel like God is speaking right to me and it sets my heart alight. There have been times when I talked to God, and he seems present, and answers. Now I read the Bible and say, “Eh?” I pray and it isn’t necessarily that I feel God isn’t there, but he is sitting on a hard chair across the room and not answering.

Maybe I feel like he doesn’t like me that much.

It has never been my in my thoughts that if God loves you, bad things don’t happen to you. In fact, quite the opposite has been my thought: that if God loves you, he allows into your life the experiences you need to grow and become the person you came to this life to be, and to contribute to the world the special gifts you have to contribute. That is what I believe.

Emotions are a funny thing, however, and especially so for me. I have had so many emotions that have tried to kill me I have learned to bury them, and I have come to have a hard time dealing with them on a surface level. Even now, how do I feel? Honestly, I know I am scared. I am scared to have a PET scan because so far every place they have looked for cancer, they have found it. I have the American Cancer Association figures in my head. Stage III breast cancer has a 72 percent five-year survival rate. Not bad. But if it shows up anywhere else, it would become Stage IV, and that has a 22 percent five year survival rate. Numbers dancing in my head, although as long as the number is greater than zero I intend to be part of the survivors.

And I’m at a loss as to how this happened, and happened so quickly. It’s not as though I never had mammograms!

But I don’t feel afraid, if that makes sense. There are tears that sometimes leak out but I’m not sure where they come from, or where they are going.

Right now I just think life will be better when I get rid of these drains and bandages, when I can get shower and get dressed and leave the house, when I can do things for myself instead of having to ask for help with stupid little things. As long as I am stuck in the house, I think perhaps the rain and storms we have had have been a little bit comforting, but my heart will feel lighter when the sun shines again, and when leaving my nest on the couch doesn’t cause me to shiver.

Life would also be better if I felt a little less alone spiritually, if God was not sitting silent on that hard chair across the room, if I read the Bible, or anything, and felt it speak to me, although truth to tell reading at all has been kind of difficult since surgery. I stopped taking the percocet during the day because the words were muddling themselves up when I tried to read or write, but there still seems to be a bit of a drag in the mental functions. I am just plain tired.

Time, time, time. That is what it will take here. Time to heal. Time to move on. Time.

Tuesday is Michaela’s birthday. I was looking at my calendar the other day trying to figure out when my next doctor’s appointment is. I saw a dot on the 24th and thought, no, I don’t have an appointment that early in the week. I had to open it up in order to see that it is Michaela’s birthday. How could that have ever slipped my mind?

My heart breaks.

Again.

 

 

Breast Cancer Journey: Perhaps I have not taken this seriously enough.

It is eight 15781015_10211421052747677_7308533655132470120_ndays now since my mastectomy. It was a modified radical mastectomy, unilateral, according to what my doctor told me at my one week checkup yesterday. That means that in addition to the breast they took a bunch of lymph glands. They biopsied one during surgery and found cancer in it, so they took a couple more that looked suspicious, and then she said they took ten others, most of which she didn’t think would be a problem. It turns out that cancer was found in every single one of the lymph glands that was removed. Not to state the obvious, but that is not good.

My mind went back to when I had that second mammogram, how I had though absolutely nothing of it, how routine and unimportant it was. Even through biopsy and diagnosis, I took it only kind of seriously. To me, even a diagnosis of breast cancer was a thing you dealt with and put behind you. My mother did that, a simple lumpectomy, no spread to the lymph glands, radiation for a few weeks, and it was done with. I have heard from so many people, breast cancer survivors. You do it and get on with it.

Now, breast cancer has become something that has run so far ahead of me that I can’t see it, and I know that I am going to have to run to catch up with it. It is not a simple fight anymore. It is going to be an all out battle. But it will be a battle.

Next steps: I meet with a medical oncologist (my doctor is a surgical oncologist), probably have a PET scan to see just how far ahead this beast has run, and schedule radiation and likely chemo.

Can’t do anything until I finish healing from this mastectomy, though, and that is my first goal. So the good news, for anybody who may be facing this procedure in the future, is that it was not nearly as painful as I thought it might be. I’d classify it more as discomfort. There are a couple of reasons for this, perhaps. One is that my doctors injected a local anesthetic that was supposed to last up to 72 hours post op. The other is that I have noticed I have a considerable amount of numbness. Not sure what this is due to. My doctor told me, but I think I wasn’t paying that much attention. I also didn’t pay that much attention when she said whether it would be permanent or temporary, because I am sitting here thinking that it can remain forever as long as it remains past the point where it would hurt if it wasn’t there! I have definitely had discomfort, and took percocet for a few days at the beginning, although within a few days I had switched to motrin except at night. But it was not nearly as bad as I’d anticipated.

The really annoying part is the drains. There are two tubes coming out of my body, each collecting liquids of varying shades of cherry and amber in these bulbs that hang by clips from my clothes. A couple of times a day I have to empty them and measure the liquid. It’s not awful, but it is annoying. There are little bandages that surround the holes where the tubes come out of my body, and they do not want to stay put at all. They are always having to be replaced, and this is annoying for me because the whole idea of tubes coming out of my body is very creepy for a germophobe like me. They were still doing their job too well to take them out yesterday, but hopefully within a few days they will be gone, and I will feel like a brand new person! In fact, healing this mastectomy is feeling like such a necessary step. It’s hard to feel like a fighter when you can’t lift anything that weighs more than five pounds, or bend over without feeling like you might break something, and when you are just so doggone tired.

So onward with this healing, which just takes time. And rest I suppose. Then to the battle.

Thank you for your prayers, and I guess I should take a moment to say that my faith doesn’t and never has rested on such things as absence of hardship or instantaneous healing, or answers to any other prayers. It seems pretty obvious to me that there are purposes to this life that require us to step outside our garden of comfort. All things work together for good, one way or the other. Meanwhile, I have been feeling a level of calm through this that amazes even me. So your prayer support is helping. Honestly, I am feeling very tired, like too tired perhaps to prop up a lot of my own faith. So thanks for holding me up with yours.

Thank you everybody. I love you.

Surgery Tomorrow!

15823276_1149299361835724_1780175567423913694_nThis time tomorrow (8:00 a.m.) I will be in surgery. Today is going to be a busy busy day. I have so much just plain cleaning to do, which I left till the last minute so I wouldn’t have to do it over again. I will start with folding the towels, putting the blankies in the dryer, and another load of bedding in the washer. I have instructions to sleep in clean sheets tonight. I am still trying to figure out how to keep my bedding clean, since I sleep with four small dogs, and since they live in my bed during the day as well. I’m a bit of a germphobe, so this is a particular challenge for me. But, anyway.

Next I am going to get my toes done. I have given up the manicures, as much as I loved them, because the time and money are just not going to be available for them. But my toes are difficult, and feet so naturally unattractive, they need help. Plus I have to look at them all the time, spread out on the bed in front of me, as they are now.

This afternoon I have to go get an injection of radioactivity into my lymph glands. I assume this is to make me glow in the dark, you know, just in case the lights go out during surgery.

And at the end of the day, I have to actually try to get to sleep early, because I have to check into the hospital at 6 a.m.!!! Well, at least we should get good parking.

I will admit I am a little nervous, but mostly I am excited to just get this over with finally and move into the next phases. I am not going to lie, that final phase a few months down the road, where I get brand new perky boobs, is a great motivator. I saw a dress today with a low back, and I thought, hey, I might actually be able to wear something like that in the future. Never, ever in my life, even when I was young and before children, could I ever have thought of something like that.

I am finally beginning to see ahead of this thing. I am beginning to look forward to summer, when hopefully all the treatments and surgeries will be over, when I will be cancer free, and healthier than ever. It is beginning to feel a bit like an awakening, that at this point in my life, instead of winding down I will be winding up for a whole new chapter.

Meanwhile, I have a few mountains to climb, and my first steps are in this surgery tomorrow. My husband and my daughter will be going with me to the hospital with me. And when I let go of their hands to go into surgery, you can bet I will be reaching out to grab another hand, one that bids me come, walk on the water, and tells the waves around me, “Peace. Be still.”

I will post again in a few days, to let you know how things are going.

Thanks for your support. Love you all!

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.