Midway through second chemo cycle

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Well, this second chemo cycle has definitely been more “exciting” than the first. I had quite a few more symptoms, including a fluttering in the chest, which ended up with me having to get an EKG and possibly having to wear a halter monitor at some point. It was almost constant the first few days after chemo but has gradually decreased to where I don’t have it at all now. At one point my home blood pressure monitor told me I had an irregular heartbeat, but the doctor said that it is likely harmless, that the dangerous irregular heartbeats are generally accompanied by a feeling of light headedness or faintness. I guess we will see in the next cycle what happens.

A couple of my family members, who I live with, got sick during this cycle as well. You all know my germophobia, which has been exacerbated by all the warnings about avoiding infections during chemo. So I have been worried. I don’t think you can live with someone who is sick and not be exposed. Generally the period of contagion starts the day before any symptoms even show themselves. I was also less concerned because my last white blood cell count had been 13.7, which is higher than normal. My labs this week, however, showed it had plummeted to 2.9, which is below normal.

This has honestly been the hardest part of chemo for me. Because I am already a germophobe and self conscious about it, I feel awkward. Asking other people to be aware of not just my idea of what I need, but my doctor’s assessments of what I need, often feels like I am inconveniencing them. It is awkward to say, “You are sick, so blah blah blah,” or “Please stay away from sick people,” or “Wash your hands and use hand sanitizer.” I feel as though it comes off like a part of my pre-existing phobia, when in reality it is not.

Even I don’t take it seriously enough. After my lab appointment this week I went to Target, where it seemed everybody was coughing and hacking. I guess this is Spring Flu Round Two. I hate it. I spent a lot of time holding my breath, avoiding people, and pulled my shirt up over my face a time or two. But I had medical masks in my bag, and I should have just put one on. I have been talking to a young woman in her 20’s who is currently receiving chemo for Hodgkins, and she has put me to shame, because she is actually wearing those masks when she goes out! I mean, what is wrong with me?

Well, in my defense, I also wear glasses, and when I put on a surgical mask it makes my glasses fog up. I bend, push, shove around, but still the glasses fog. Anybody have a solution for this? Any medical people out there who wear glasses?

Here is a funny story, though. I have been washing, sanitizing, and using gloves when I do things like change my grandson’s diapers, like I am supposed to. So the other morning I was babysitting, and he had made quite a mess with is breakfast, so I decided to just take him straight to a bath. I filled the sink, took him out of his high chair, then held him over the garbage can and released the diaper into it. When I did that he laughed, which should have been my first clue that something was wrong. So a minute later, there he is, in the sink, and I see things floating in the water, and I think, that doesn’t look like cereal. Turns out the diaper I’d popped off him had been poopy! So there I am, up to my elbows in poopy water. I scooped his wet self up, let the water out of the sink, cleaned it briefly with disinfectant, rinsed it, then put him back in and filled it with water and bubble bath. So much for my sterile techniques! And yes, afterwards I did bleach the sink out, along with all toys and washcloths that had been in it! And somehow I seem to have survived.

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So I have got to resolve to start taking better care of myself. And that includes diet. My diet before chemo was really good! But since chemo started it has gone all bad. Of course, I was told that I was not supposed to eat raw vegetables. I used to eat a variety of vegan sandwiches, but honestly eating them without vegetables made me gag. There are many vegan foods I used to like that suddenly I just couldn’t stomach. So I have been off my vegan diet, and I have been making pretty unhealthy food choices I must admit. I have had wild cravings for carbs for one thing.

This could be due to the crazy things being done to my blood sugar associated with the chemo. I take steroids for four days after every chemo infusion, and because steroids are known to raise blood sugar, the medication I was taking for diabetes was increased. I was even told that I might have to go on insulin. As it turns out, the effect on my blood sugar has been minimal. It goes up modestly after the steroids, but goes right back down. Meanwhile, I am continuing to take the increased medication, and given that my A1C before the increase was 5.9, I am not sure I needed it. I am perhaps happy to have it right now, because even eating all the carbs I am, my blood sugar is not reacting badly. But could it be why I am having the cravings in the first place?

Who knows? My body is under attack from many sides right now, so who knows which attack is doing what? But I don’t need to be adding to the assaults. I need to treat it gently, to give it all the good things it needs and to protect it from the bad.

Mentally, I have resolved to do the one thing that I have deliberately not done, and that is ask my doctor for a prognosis. On the one hand, after surgery and the PET scan, I told myself that I was cancer-free and all I had to do was mop up with chemo and radiation and then I’d be fine. But I was reading a breast cancer forum the other day, and at the end of each entry is a blurb about the person who wrote it, giving the date of diagnosis, the type of breast cancer, stage, treatment types and dates. I couldn’t help but notice the number of people who ended up with Stage 4 cancer after surgery, chemo, and radiation. As one woman put it:

Last treatment! All done.

Oops, never mind. Mets on liver.

My main concern just continues to be how I will get on with my life after this. I don’t have a job. My state disability will run out before my treatments are finished. I have a little bit of money to get me by for awhile, but not forever. I am wishing I could find a way to be self employed, something I could do sick or well, when white blood cells are high or low, while I am recovering from reconstructive surgery that I hope to have down the road, or even if I should need more treatment in the future. I don’t know if I will even be able to get a job! I know that you are not required to tell a prospective employer that you have just finished treatment for cancer, but I am too honest not to when they ask what I have been doing these last months when I haven’t been working. I’m praying really hard about this! I still have a family to help take care of!

For now I am hanging out in my room, reading, writing, snuggling my little dogs, bandana on my head and a mask on my bedside table, trying to focus on today and not to worry about tomorrow.

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.

Breast Cancer: The Journey Continues

It is not quite three weeks since my diagnosis, although it seems like a million years. This time has been spent getting tests and more information so we can plan our attack.

I had an MRI, which showed that the cancer was quite a bit larger than they had estimated based on the ultrasouIMG_0243nd. This upped my staging to at least IIA, and changed the surgical approach from lumpectomy to complete unilateral mastectomy. I was really pleased initially to find out that breast cancer treatment includes getting nice new boobs. Even the lumpectomy was to include breast reduction to make them match, which would have been done at the time of the initial surgery. Now I will still get nice new boobs, but it is going to require reconstruction, and because I might need radiation, it will not be done at the time of the mastectomy. Instead I will get an expander put in, which will be pumped up gradually each week, and then after the radiation treatment, they will do the reconstruction and make both boobs match. But in the meantime I will be having to live with one missing boob and one, umm, old boob. That will be unpleasant. I’d almost rather have them both gone, but nobody offered that option.

The other fun part is that rather than getting an implant (did you know that those have to be replaced every ten years???), they are going to use my own belly fat to do the reconstruction. So I will get a tummy tuck as well as a boob job!

In addition, I have vastly changed my way of eating since the diagnosis. I am basically following the Crazy Sexy Cancer diet (ala Kris Carr). I have been a vegan before, and I stopped because it was too hard to try to feed my family, most of whom were not in favor of beans and tofu. So it wasn’t a leap. The book (or movie) Forks Over Knives is also pretty informative regarding the health benefits of a diet free of animal products. Here is the thing, though … I am loving it! I not only have no desire to “cheat,” the very idea of eating something with animal products is repellant to me. My appetite itself has changed as well. I no longer desire to eat for entertainment, boredom, or out of stress. I just eat when I need to eat, and my only desire is for regular size portions. I also gave up drinking diet sodas, and I do have to wonder if this has something to do with my appetite regulation. As much as I resisted the notion, I have heard for years that although diet soda doesn’t contain any calories, the artificial sweeteners do trigger your appetite. Who knows? Maybe they were right?  Or maybe it’s just my general state of mind, which is a little bit, umm, odd right now.

So yes, I am focusing on these improvements, because they are the good things to focus on. I have a lot of trepidation about surgery and recovery, but there is no point in it, so I am putting it on the back burner. It’s not like I can say, oh no, I don’t think I want to do that. I will just go in and do it and get over it. One step at a time. Worry is a misuse of imagination

The fact that I am dealing with cancer, which is a deadly disease, is something that I know, but it is something that just hasn’t made its home in me. To me it is an illness, something that has to be treated, and with treatments that are sometimes unpleasant, but I am not thinking about the possibility of dying. I asked my older daughter if she had looked up my survival rates, because I was pretty sure she had, and she told me they were 80-something percent. Those aren’t bad, right?

When I was reading the Bible one morning, I came across this passage:

“When you pass through the waters I will be with you; and through the rivers, they shall not overwhelm you; when you walk through the fire you shall not be burned, and the flame shall not consume you.” Isaiah 43:2

That reminded me of a book I had read many years ago about a young mother suffering from cancer, Walking Through the Fire, by Laurel Lee. Published in 1977, it is now out of print, but I purchased a used copy on Amazon. Her description of her feelings at her diagnosis with Hodgkins Disease felt familiar: “I was in myself, receiving a new dimension of concerns, and I was outside myself, watching myself receive it. I was not upset, and I puzzled at this…. I walked outside thinking, I get to think about things that usually would be held from me until later seasons of life. Wisdom is the principal thing. My body rode the bus home, and I executed the correct mechanical procedures to transport us, but my mind kept sorting images.”

Yes, that is kind of how I feel. Somehow outside myself. In truth, there are those occasions when I am beset with this inner trembling, but even that seems to arise more on a physical level than a mental level. My body, I guess, knows I am afraid. My mind just doesn’t acknowledge it. I have a lot of practice at this kind of thing, though. My mind has been burying my feelings for 28 years now, since my daughter’s kidnapping.

The last time I saw my breast cancer surgeon, who I trust and love, she hugged me when we parted. I don’t think I have ever had a doctor do that before, even my primary doctor who is loving and kind and but hugs you only with her eyes. I very much appreciated the gesture, and hugged her tightly, but it kind of worried me as well. Doctors are always asking if I have more questions, prodding me as though there are some questions they know that I have forgotten, but I just say no. I’ve never asked that question regarding prognosis and survival. Just one step at a time. I wondered for a second if the hug was because she knew something I didn’t know, but I concluded it was just because she is a wonderful human being.

Laurel Lee’s cancer was advanced, and she was pregnant at the time of diagnosis. Plus it was forty years ago and cancer treatment was not what it is now. In her surreal state of mind after diagnosis she said, “The doctors were too serious for me not to be serious. I made an appointment within myself to consider dying.” I am pretty sure I am not afraid of dying. But there are reasons I need to stay here. There are people who need me, and there are things I need to accomplish. I have been procrastinating for a very, very long time on some of the things I need to do! I came across an interesting quote this morning by Ted Dekker: “Perfectionism is procrastination in cheap disguise.” This would apply to my failure to make proper progress in writing. I’m fifty pages into the book I have been hatching in my mind for so long. Perhaps this diagnosis is what I needed to light a fire under me, not only because I want to accomplish what I believe I need to accomplish, but because I hope to be able to make a living at something, somehow, some day.

It occurred to me that I had never learned the end of Laurel Lee’s story, so before I started re-reading the book, I looked her up. She did die of cancer, not the original Hodgkins, but pancreatic cancer, about thirty years later. Okay. Give me another 30 years and I will be fine. Meanwhile, Laurel Lee got to accomplish those things she wanted to accomplish, raising her little children, and touching the world through her writing.

There are still questions about my cancer that will not be answered until after the surgery. It could go from Stage II to Stage III yet, depending on the lymph node biopsy. I might need radiation, or might not. I might need chemo, or might not. There is no point in looking far ahead because the aswers are not available.

So all this has been like basic training, I guess. Soon the battle will begin. I will be sure to write from the front, and let you know how things are going.

Meanwhile, just remember, whatever it is you are facing today, YOU CAN DO IT. 

Love you all.