Waiting games

I sit reading, and while I read, my fingers run across my neck, then down across my collarbone. This is a subconscious habit of mine, it seems, and a fortunate one. A few days ago, though, as I was doing this it suddenly struck me, I am caressing my cancer! I was really kind of shocked by that realization, and not sure how to feel about it! It had always been a kind of a caress, so I was caressing my cancer, the thing that wants to kill me! So I took a moment of mindfulness, stroked this injured area of my body, and talked to it.

Surprisingly, the first thing I said to it was, “You are a part of me, and I love you.” What? How could I say that? But I did, and I realize that I do. My next words were, “But if you stay, you will destroy me, so thanks for the visit, but you have to go because I have to stay.”

I guess this is the theme of my life, that every bad thing that happens to us has a good purpose. That purpose may not be for me at all. It may not even be for anyone I know. But it will do good somewhere for someone.

It does for me. All the things I have suffered in life have most definitely made me stronger. They have made me less so much less self involved. Sometimes I think I should rename this blog, “It’s not all about me!” It’s given me a bigger, greater perspective on all things in life. And it has invariably shown me my blessings, which shine even brighter in the darkness! The people who probably suffer most from the current goings on are my family, and while it is potentially devastating for them, even this short and unknown exposure has shown me a depth and strength in them that fills my heart with joy, and their strength in turn strengthens me. They are strong, my children.

So I am still stuck in the waiting time, and it has been hard. My biopsy report is back. I was originally told that it was triple negative metastatic cancer. Breast cancer can have estrogen receptors, progesterone receptors, and HER2. I honestly don’t know that much about HER2 because my tumor was negative for it last time, and is negative for it this time. The biopsy on the original cancer was strongly estrogen positive, mildly progesterone positive. I have been taking medication to rid my body of any traces of estrogen, but the cancer adapted and showed up at this time as having barely any estrogen receptors (last time 99%, this time 2%). It is not more progesterone positive (70% now, 40% before). So it’s not strictly triple negative, although my oncologist said we would treat it as triple negative in treatment. Each receptor the tumor contains gives you something specific to target in treatment, so having less to target makes treatment more difficult.

I am destined for chemotherapy, however, at the least. The oncologist said he was going to get me an appointment to have a chemo port inserted.

But the most important test, the PET scan, could not be done. They had scheduled it for first thing in the morning, when my blood sugar is always at its highest for some reason. I had followed a low carb diet for a couple of days and had fasted for twelve hours, but my liver reacted to the low blood sugar by flying into a panic and pumping out glucose. So it had to be rescheduled for next Thursday, in the afternoon when my blood sugar is usually low, and I am following a strict keto diet between now and then so my body will get used to not having a ready supply of sugar. The test procedure involves injection of radioactive glucose into your body (or perhaps drinking — I can’t remember). The malignancies gobble up glucose (food for thought in itself), and the radioactivity makes them light up in the scan. If you already have a lot of circulating glucose, the malignancies might already be full, and will not take up as much of the radioactive glucose, and may not show up in the scan.

Anyway, much technical talk to say that I know little more than I did before. The PET scan will show if the cancer is limited to this local site, or if it is elsewhere as well. Without that knowledge, planning and prognosis is really just not possible.

Nevertheless, there was one day this week, the day someone said the words to me, “triple negative metastatic breast cancer,” and I googled it, that I was certain that I was going to die, and that it was not going to be a long time away. I was pretty weepy that day. But I sat in my “great room” (that’s what it’s called, not something I made up), and looked out the windows at the park like setting that is my yard, and the yards of my neighbors. I have decided that if I die, I want to be cremated. I want my ashes not to be kept in an urn, but distributed to my children as they wish. And I want them to be planted. I told my daughter, I want to be in the potted plants inside the house, because I want to listen in to conversations. But I want some of them to be buried in my back yard, with a tree planted on top of them. Just thinking about that, about being able to stay in my back yard, really made me happy. I thought about my grandchildren playing above me, about my children sitting in the yard. It made me feel as though I would not ever actually have to leave them. I love this house so much, and I envisioned it as being a haven for my family, a place they could live, a place they could visit whenever they needed rest and comfort. And I felt good about this.

I eventually came out of this to a more positive place. As scary as TNMBC is, first of all, it’s not actually triple negative, and secondly, it is right now embedded in the fat on my neck. It’s on my collarbone, but it is not growing into our out of the bone. We know this from the MRI. We know also from the CT scan of the upper part of my body, that my upper lungs are clear, and my brain is okay, and there is nothing unusual going on in the bones. So if this cancer is limited to this spot, it is actually very treatable. A diagnosis of metastatic cancer is something that is going to stay with your for your life. It will require constant monitoring. But I can still live. I can enjoy many years full of many moments. I can see my children put down roots and grow into themselves and their lives. I can watch my grandchildren grow. I can enjoy all the seasons that come and go here in this place I love so much.

And that is where I am right now. The waiting is awful, not just because it is waiting, but because I am anxious to get going on whatever treatment. I can feel that the tumor is much firmer than it was before they started poking and prodding it. I know that at the time my original breast cancer was diagnosed in November, the cancer was a little pebble on the underside of my breast, which I wouldn’t have noticed if they hadn’t pointed it out. But by the time I had my mastectomy in January, I had been able to feel it grow into a ropy structure that extended up around the side of my breast and into the nipple. I have lost a year and a half since I first felt this bump, but I kind of feel it reacts to being poked and snipped (not saying this is true, just that it’s how I feel), and I am anxious to discourage that.

So, next week I will probably have some news. Until then, your prayers are so much appreciated. Enjoy every moment of your lives, love one another, protect one another, and be kind.

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15 thoughts on “Waiting games

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  1. Prayer for a miracle 🙏 I pray that the next time you go to your oncologist you are told you have no cancer it was all a big mistake. I truly believe in the power of prayer. I don’t want you to be ashes in your back yard Sharon but a living healthy mom and grandma sitting in the backyard and listening to all the conversations and watching your grandchildren playing in front of you please take care 🙂 of yourself.

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    1. I have been following your Story from afar for many years now. Like many Others I Wish you all the best and will pray for you. Heartfelt best wishes to you and your Family Sonja

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  2. I’m a shia Muslim and there is a holy shia shrine in Iran and people of all religious backgrounds don’t matter what religion ask for prayer and intercession alot of cancer patients are cured if God wills a miracle happens they come out cancer free they gain there health look into it if you want Sharon hope you don’t mind. Imam Reza shrine in mashahad Iran.

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    1. Thank you Zahra. But I don’t think I need to travel to meet God or receive what he has for me. He is right here in my lovely little town in Iowa, in my house and in my yard. ❤️

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  3. Very vey true Sharon God is with you ever where. I hope I did not hurt 😔 you in anyway. And just to make it clear no need to travel it can happen from far away. Any ways I will continue to pray for you.

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  4. I believe the way you show love in hard times to something like your cancer ,and your positive thinking during a negative situation will make you victorious over this battle. Also I love how you always remain calm in the toughest situations I sure am learning 🙃 this from you Sharon thanks to you and sweet Michaela. I remember watching you speak so bravely and beautifully on Michaela’s 30th kidnapping anniversary. And my mom and I both watched you on the news how you said I would like for this to reach Michaela if she’s alive.

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