I need to be brave

Blog what if fail or flyAs I was sitting in the waiting room at chemo yesterday, I read a blog by a fellow cancer patient and amazing person, Nanea Hoffman, in which she talked about being referred to as a warrior. But she said she felt more like the battlefield than the warrior. I couldn’t agree more! Even reading the title and intro to the blog, I was thinking, I am not a warrior. I am not doing anything heroic here. Just like everything else in life I get kudos for, I am just taking one step at a time, “following directions” as Nanea put it.

But I’ve been doing a bit of inner assessment lately, and I have decided that perhaps being the battlefield is not enough. Perhaps I really do need to hit that warrior pose.

At a recent trip to my oncologist, I asked about my prognosis. Funny how it took all these months to get to that question, but it did, and then I only asked it because my daughter wanted to know. So here is the answer. Right now I am cancer free. However, because I was at Stage 3C, there is a 40 percent chance of the cancer reoccurring. That’s why I am undergoing chemotherapy and radiation, to reduce those chances.  My five year survival rate is 72-82 percent. My ten-year survival rate is 55-65 percent. Now those odds are better than even, right? I have more of a chance of surviving than I do of dying, but honestly those are also pretty good odds of dying.

Yesterday evening I was talking to one of my son-in-law’s friends who is studying nursing, and he said that he has full respect for medicine, but that he also believed there was more to it than that, and that our will plays a large part in our healing. And I had to wonder, where is my will in all this? Because I have been feeling awfully defeatist lately.

I am at a point in my life where I just feel kind of lost. I have no idea what the future holds, and no real firm plan for it. I’m just kind of tossing filaments of hope out there and praying something comes back on them. Or to put it more accurately, I am spinning filaments of hope, when what I really need to do is get off my butt and start tossing them. They are not going to reap anything sitting in a pile on my bed.

Physically, I have been on a deep downward spiral. Some of this can be attributed to chemotherapy, for sure. I seem to have blessedly escaped most of what I had feared with chemo, but its effects have been certain. Before I began chemo, I was a vegan, and I will not equivocate on the fact that a vegan diet is established as that which is most likely to prevent and help heal breast cancer. When I asked my oncologist about diet, that was the first thing out of his mouth: there is some evidence that a diet free of animal products is effective in cancer prevention and treatment. But the next thing out of his mouth was, don’t worry about that during chemo. Just eat whatever you are able to eat.

And oddly enough, one of the first things I was unable to eat was most vegan foods. Things that had been the main staples of my diet suddenly made me gag. In my first chemo cycle (AC — adriamycin and cytoxan), I had trouble with a lot of foods. There seemed to be one thing that I’d latch onto and I’d eat that almost exclusively until that too made me gag, and then I’d latch onto something else. These were not vegan foods. There was boiled chicken and rice, well known for nausea abatement after all, then quesadillas, then tuna sandwiches on Beckmann’s Whole Wheat Bread. At one point, I became unable to drink coffee any longer. In the space of a week I threw two full Starbucks iced almond lattes in the garbage after just a couple of sips. At home I switched to tea. Now if you know me at all, you know that coffee has always been my “comfort food.” Such is the power of chemo!

Now, four infusions into my second chemo cycle, Taxol, I am feeling completely different. At this point I am ravenous. I am hungry all the time. I believe I am feeling the effects of the steroid, decadron, that I get with my infusions. Why I would feel it more now I don’t know. I got it in the first cycle, 10 mg by IV with the chemo infusion, then 8 mg a day for three days after. That came to 34 mg every two weeks. Now I only get it with infusion, but I with the Taxol I get infusions every week instead of every two weeks. That means I am getting a total of 20 mg of decadron every two weeks, which is a lot less total, but perhaps it doesn’t have a chance to clear my system as well? It has given me insomnia, and the heebie jeebies, and it has made me want to eat all the time. And I have slipped back into some really negative eating patterns of unhealthy foods in unhealthy quantities, and I even started drinking diet sodas again. It’s a vicious circle, I know. The bad foods and sodas only make you crave more bad foods, regardless of what made you start eating them in the first place.

So I am thinking that with my revived appetite, it might be that I can start eating the vegan foods I used to enjoy. And then maybe I can cut out the bad foods I have been eating.

I initially had a lot of paranoia about foods as well. Actually I had paranoia about everything, because, you know, diminished immune function due to chemo leaves you open to infections. So spring flu season rolled through shortly after I started chemo and I did catch a chest cold, and yes it was worse than the chest cold that everybody else had. It turned into a fever and had to be treated with antibiotics, and then it turned into a cough that hasn’t completely gone away eight weeks later. It does seem I have had some troubles with food. I really couldn’t eat food that had been left out for a long time, or leftovers, without getting quite an upset stomach. But my white blood cell count remained high through the first cycle of chemo because I was getting Neulasta, which boosted white blood cell production higher than normal.

In this second cycle, I no longer get Neulasta because the effect of the Taxol on your immune system is not as drastic. My white blood cell count has continued to fall every week, however. This week it was at 4.5, which I think is low for a normal person, but okay for someone on chemo. Nevertheless, my chemo nurse has told me that I can eat those forbidden vegetables. I’d been told to avoid any fruits or vegetables that can’t be peeled. That took a lot of joy out of a lot of things, like simple sandwiches, never mind actual salads. I substituted doTERRA Terra Greens, a powder which you can mix with water and drink. It wasn’t awful, but you couldn’t put it in a sandwich like lettuce and tomatoes. It didn’t have that crunch, and you couldn’t stick a fork into it, like a salad. It lasted 30 seconds, because you don’t savor it. You get it down. I’m sure of its health benefits, but it’s not a meal.

I know chemo will be over in eight weeks, but I don’t want to spend those eight weeks slipping further down this slippery slope.

The answer to my problems is not all diet, however. It is a battle in my mind, and in my spirit, and in my body. It is a battle against fear, and against this deep down sense that I am not worthy, or just simply that I am not able to achieve success.

I have spent a long time dwelling in my mind and honestly ignoring my spirit and body. My mind demands to be entertained, to be kept busy. I couldn’t stand still in a line at a store without getting out my cell phone to occupy my brain. There are probably a lot of good reasons for this. There are a lot of deep dark holes in my life that my brain has done a darn good job of keeping me out of. Distract and deny. That is perhaps the secret to this “strength” people keep accusing me of possessing. But it is not real strength. Real strength lies in the ability to look into those dark holes and turn on the light.

Even my spiritual practice has rested in my mind. It consisted primarily of reading the Bible and having brief one-way conversations with God. Well, I have pretty much given up the Bible reading at this point. I know there are ways to read it and ways to not read it, but I couldn’t master those. I just kept tripping over things, stopping and saying, “Wait. Is this really what you are like, God?” I have read the Bible many times over the last 40+ years, in many different frames of mind. I have read it and have not seen all the things in it that I cannot avoid now. I will probably go back to it at some point, because it has drawn me all my life, but for now I have put it down. I am thinking perhaps it is time to spend some time allowing God to speak to me, that it is time to still the mind’s incessant need for input and let my spirit be quiet so I can hear. God, who are you? Who am I? What do you want from me? Or, more to the point, God help!

I am thinking it is time to spend more time in my body as well. My strength has been zapped. The first chemo made me feel tired all the time. In this round, I think I might have a little more energy, if only from those darn steroids. I haven’t been able to use it much, though, because my muscles and endurance have suffered and getting them warmed up and going again is no easy thing.

But this I know. Days drift by, and I need to catch them before they have all disappeared and I am left adrift in the mist. I am afraid of the future, and it has created in me a kind of paralysis. I don’t want to move. I think of things do be done and I am filled with a deep lethargy. I have got to break free of this. I need to find a way to support myself and my family, and to fight this battle like a warrior. For this very moment, perhaps the best I can do is utter that prayer: “Help, please.” Show me the way. Give me the strength to walk the path, even when it leads me up the mountain. Help me to not only endure, but to succeed, to conquer the darkness that wants to swallow me.

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.

This is me without hair 😊

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Thank you all for your Facebook comments and messages trying to help me decide what to do with my hair. I made a decision, and what you said actually had an influence on me.

One friend said that she knew whatever decision I made, I would be fine with it, because I am such a positive person. Well, I knew that of all possible worlds, there was one thing I was not feeling positive about, and that was the ugly hair falling out all over the place! I figured if I cut it all off I would find a way to be fine with that, but I was never, ever going to be fine with this nasty mess.

Another friend sent me a message from someone she knew who had been through cancer treatments. She said, “Take your own hair before cancer takes it.” She suggested a party with wine, but I just had a few moments with my daughter in the bathroom, and coffee!

One other thing that influenced me was when I looked at this blog and saw the photos of just what my hair looked like. It was not attractive. It made me look unhealthy, and whether I am or not we don’t need to emphasize that.

But probably the thing that motivated me most was when I looked at my pillow from last night, and it looked like it had grown a fur coat. That was just disgusting. And this morning when I was babysitting my grandson, when I’d hold him up on my shoulder I was afraid he would be inhaling all these flying hairs. So anyway, it’s gone. It was a full on shock when I saw myself for the first time. I looked like a man, for one thing. And not a young sexy one at that! But it feels good. It feels good not to have to worry about the hair falling out, and it feels good to get on to the new phase and start experimenting with scarves and the like. And Lori’s friend was right, it felt empowering, to take back at least one thing from cancer.

So you aren’t likely to see me wandering around with a bald head, but here it is, this one time, in all its glory.

I have received a number of special little gifts during this ordeal, but one of my favorites is a bracelet from my daughter Libby, which is pictured at the top of this blog. I have tried to take photos of the whole thing, but because of its size and shape I haven’t been able to.  So I will just tell you what it says:

What Cancer Cannot Do … cripple love . shatter hope . corrode faith . suppress memories . silence courage . steal eternal life . conquer the spirit . kill friendship . destroy peace . invade the soul

IMG_0016So now there is one more thing I can add to the list of what cancer cannot do. It cannot make my hair fall out! I

Love you guys, and really, thank you for everything.

And by the by, this is me. 😊

Hair Loss: when to shave?

I am beginning to lose my hair from the chemo, and it is a disconcerting and confusing process. I didn’t have all that much hair to begin with. It has always been both thin and fine, and I cut it short in anticipation of hair loss. So the process is probably a lot quicker for me than it is for others. But it’s still just, well, creepy.

Washing my hair is creepy. The feeling of the little bit of hair is creepy, like a mat on my head or something. And so much of it comes out. It sticks to my hands and clogs the bathtub drain. I don’t do much of anything else with my hair these days. No brushing, try not to touch it. It doesn’t come out in clumps, though. It falls out in wisps, little light wisps. This is fine except that they sometimes like to get into my eyes, or worse, my mouth. The other thing is that is sometimes hurts. I have had a couple of areas on my scalp that just became very sensitive for awhile. I’d been horrified that I might be getting sores or something, but my daughter checked and said no.

I am sorely tempted to shave it all off, just to get it over with. I told myself I would do it when I started getting bald spots. I don’t have big, clumpy spots now, but there are definite areas where the hair seems to be missing. It looks unhealthy. I have thought about putting a hat or scarf over it, but I am afraid the hair will get all over my nice hats and scarves and ruin them.

I really hate the idea of shaving it off. It feels contrived or phony somehow. I have become kind of sensitive to making it obvious when I’m out in public that I have cancer. I spent years having strangers stop me in the store to tell me how sorry they were that my daughter had been kidnapped. I don’t look forward to pitying looks or comments now.

Anyway, feel free to cast your vote if you have one!

Breast Cancer Journey: Don’t be afraid. You can do it.

15823276_1149299361835724_1780175567423913694_nWell it is Wednesday, and time to start preparing for my second chemo infusion. That, to me, means some basic germ eradication in obvious places, washing and changing my bedding, and the dogs’ bedding, which lives on my bed, and doing some grocery shopping before my white blood cell count is up for eradication again.

It turns out none of these precautions were necessary for my first chemo cycle. I amazed my doctor with how well I did. I am not sure if it is because I did so well, or because he expected me to do badly because of the trouble I had getting rid of my drain. When I went in to see him on Day 7, he looked at my blood work and said, “This is from today? You had chemo?” My white blood cell count was 4.9 at that time, normal being 3.5 to 10, and chemo patients getting as low as 0. I was told that I would probably know if my count started getting low, because it makes you very tired, sometimes achey, kind of feeling like you have the flu. That is a very smart design feature, I think, that when you are most vulnerable to illness, you will not feel like doing things that will expose you to it.

Above is a Neulasta On Pro. This is attached to your abdomen or upper arm the day of chemo, and is programmed to inject medication 27 hours later to help boost your white blood cell production. It has flashing lights and beeps and clicks when it injects, and is very entertaining for grandchildren. 🙂

The nausea that everyone dreads when they are told they will have chemo is pretty well controlled these days with medication. You get two anti-nausea meds by IV before they even start the chemo, and there are three additional take at home meds, one for every day in the cycle, one for daily use in the first few days after chemo, and one for as needed. I never did use the third one. My nausea  was mild and seemed to be directly related to food. The thought of eating most things made me nauseous. I kind of lived on toast and cereal for a few days. The vegan options I had made me nauseous to consider, by the way. I have to admit that by the fifth day my little vegan heart was craving chicken. I thought I would die if I didn’t have chicken and rice. So I did.

I also left my self imposed exile. As the days went on, I got to feeling better and better. In the first few days, I was a bit tired and needed to nap frequently, although on Day 4, I babysat my 15-month old grandson all day, and not only did I not get tired, it made me feel terrific. I’d stuck my head out into the world at the grocery store and it appeared that the recent late flu epidemic was subsiding, so on Sunday I actually gathered my courage together and went to church.

I was told by the nurse that administered my chemo that the first treatment is usually not so bad, that it is usually around the third treatment that you start to feel it, just because the assault on your system has worn you down. That’s also when you usually lose your hair. So we will see as we go on, but for the time being, it’s okay.

I am also ten weeks post mastectomy at this point, and honestly, that wasn’t all that bad either. The post-op pain I would classify more as discomfort than actual pain. The drains were an ordeal, and I kept mine for a record amount of time, but they were not painful. They were just annoying. The incisions have healed, although the scars are still pink, but I can look at the surgery site without it bothering me at all. In fact, if I’d had a double mastectomy, I probably could have lived without reconstructive surgery. Since it was unilateral, I will choose to go through that, although it sounds like the worst and most complicated part of the whole treatment.

I wanted to pass this message along for anyone else who might be newly diagnosed with breast cancer and facing any or all of these treatments. I subscribe to a couple of other breast cancer survivor blogs, and one is just full of woe. Absolutely everything she has been through has been intolerably painful, from the mastectomy to the chemo to the expanders in preparation for reconstructive surgery. She even said that the drains were so painful that every movement hurt. I can’t tell you how glad I am that I didn’t read that blog before my own mastectomy experience. It might make a difference that my plastic surgeon is excellent when it comes to pain mitigation. He is David Chang in San Francisco if ever you want any plastic surgery done. When he places an expander, he puts a shot of botulism into the muscle so it won’t spasm and cause pain. When I had my surgery, he administered a three-day local anesthetic. Now I took pain pills after my mastectomy, but you have to understand I do not have a high pain tolerance. In fact I have zero tolerance for discomfort. If I get a teeny tiny pain somewhere, I get out the motrin. So I medicated my post-op discomfort, but I don’t recall ever at any time being laid out by pain.

But here is another odd thing about me. This cancer this is not bothering me. I am not scared. I am not sad. I can’t really tell you why. I do have the most amazing skills in denial of pain, honed over 28 years of living as the parent of a kidnapped child. Perhaps it is nothing more than that. Pain? Block it out. But I don’t think it is. Is it my faith? Mmm, in a very general way that is a huge part of it I think. It’s almost as though I recognized cancer when it came along. “Oh hello. I was expecting you without even being aware of it. You and I have something to do together, don’t we?” It is also true that I am confident of my recovery, at least at this point in time. I have been told that my cancer is “very bad.” It is Stage 3C, the worst you can get before it is deemed uncurable. But at this point, it has all been removed. There were good margins in the surgery, and the PET scan was clear, so any cancer that is lurking in my body is small, cellular. I am confident that the chemo and radiation will eradicate it and I will go on to live another day, to walk down new roads and pass through secret gates I have previously passed by. I also kind of suspect that this cancer might one day kill me, either the breast cancer itself or a secondary cancer as a result of the treatment for the breast cancer. But I don’t expect that will be for awhile yet, and I’m not all that young, so I am not worried about it. I just want to make sure that I do not waste the time I am given.

The other thing is that I honestly don’t think that I am afraid of dying. I think part of that is denial as well. What can’t be cured must be endured, and you might as well do it with a good attitude. That’s how I have lived my life, and it will probably be how I end it as well. Plus I tend to think of death as a great adventure! I have my faith, my beliefs, but even if I am wrong I am not afraid of it. Even if the atheists and humanists turn out to be right and my heart and soul are nothing but biology that cease to exist at death, I won’t know. I won’t care. The only thing that has bothered me is worrying about my family. I don’t want anybody to hurt. I want to make sure everyone has what they need to get through, and to live a happy life. But I have learned that all of that is not really up to me. It’s been part of my life task in recent years to let go of my desire to advise and control circumstances in order to protect my children. I have learned to say, “They will be okay.” And they will be, no matter what. Even if they have some mountains to climb and rivers to swim, they will do it, and they will be okay, and they will be all the stronger for it.

I don’t want to make light of things. I know cancer can be a horrendous disease. I have been reading a book about man with cancer that metastasized, who underwent treatments that were so painful that he could not complete them. His cancer spread to his bones, which as a result broke when he sat on them. And my thought was, if you have to have cancer, breast cancer is much easier. They can just cut the things off. Unless you are planning on having babies, their only function is decorative, and current health law mandates that their decorative function be restored. But even breast cancer and breast cancer treatments can lay people low, I know. I may be one of them yet. I am in week two of twenty weeks of chemo. I should keep quiet until week ten, and then tell you how easy it is or isn’t. But meanwhile, I just wanted to encourage those who are starting out on this journey. Don’t be afraid. You can do it.

Thoughts after first day of chemo

IMG_1542They finally got me into that chair for my first day of chemo today. It wasn’t itself unpleasant. The people who work at Epic Care in Castro Valley are so nice, they of course made it easy. It took a long time, four hours total! I got very tired and could have slept through a lot of it, but my husband and daughter were with me so I pretty much stayed awake. My husband brought me an iced almond latte from Starbucks, which revived me slightly but still left me half in dreamland.

I came home and slept a nice, deep sleep for awhile, and woke up feeling pretty good. No big surprise since the first half of the chemo was devoted to pumping me full of stuff to make me feel good. I got one three-day anti-nausea medicine, one day’s worth of Zofran, another antinausea medicine which I will take in pill form after today, and a good dose of Decadron, a steroid that is supposed to prevent nausea and other side effects of chemo. Both my oncologist and my endocrinologist have told me that decadron is likely to raise my blood sugar, and that even though I have never taken it before, I might have to use insulin while doing chemo. I am sending my blood sugars to my endocrinologist daily so she can keep tabs on it.

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Big scary needles, happily going into IV and not directly into me.

I have been checking my blood sugar since I got home, and while it is higher than normal, it hasn’t become outrageous yet. But I haven’t eaten much either. I don’t really have much of an appetite right now anyway, at least not for healthy foods. The desire factor could cause me to eat all sorts of things that would be all bad, so maybe it’s a good thing I have to keep an eye on my blood sugar.

I am feeling a tiny bit better about the immune suppression factor since the chemo. The chemo tech was telling me it is best not to eat at salad bars, and I said that they told me not to eat salad at all. She said that is really only true when my white blood cell count is down. Now the tricky thing is figuring out when that is true, which is perhaps why there was just a blanket “no” to these things. They don’t make home white blood cell count test strips or anything! I get this checked once a week, and in between times I have no idea what my white blood cells are doing! The tech said that if my white blood cell count was going down I would know because I would start getting really tired. I said, “I think my white blood cell count is going down now.” This was me being funny of course, because I knew it was too early for that to be happening. But it was also me making a point. She said I’d know the difference, so we will wait and see. That would be a pretty clever built-in design mechanism, though, that if you are susceptibe to infection you become too tired to go out and get infected!

I also get spiffy meds to help keep my white blood cell count up. I have a little injection bot of Neulasta plastered to my abdomen right now. Neulasta: as featured in commercials on MSNBC if you are interested! Anyway, they stick it on you, and then after a short while it starts making warning beeps, and then it jabs you with a needle, which inserts a plastic tube in between itself and your lovely self. Then after 27 hours it spends 45 minutes injecting a small about of medication into you through that previously placed tube.

This medication induces your body to make additional white blood cells, which considerably reduces your chance of getting an infection during chemo. Common side effects of Neulasta include bone pain, especially in the lower back and hips, as the bone marrow there is working hard to make the white blood cells and it might gripe about it. Oh, and it can make your spleen explode. I learned that on MSNBC. (Why do they have those commercials for medications! They have to tell you every bad thing that could possibly happen, which leaves no one wanting to use any of these products ever!) But the chemo tech said that she has never heard of that happening to anyone in real life. Just the pain. Take Tylenol, she said. Take Percocet, she said, since I have some left over from my three surgeries, and they will be happy to refill it if needed. Well, we will see. Perhaps I won’t have the side effects, or perhaps they will be bearable.

But the point of this is to alleviate some of my paranoia about immune system deficiency. “Don’t put your fingers in your mouth,” she said. I had no idea how often I actually do that! She eased some of my concern when she made the comment that germs at home are less of a problem because my body already knows how to deal with those, because with four small dogs and one small child, my house is a germ festival I’m sure!

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I don’t think I could ever get used to the idea of going out like this.

I still have some anxiety though. I went out yesterday. I had two doctor’s appointments in two different offices. The receptionist (that I didn’t see thankfully) at one of the offices was coughin and hacking. I seriously thought, she should be wearing a mask. There are medically fragile people who visit doctor’s offices and they don’t need the receptionist making them sick. I got a pedicure, and I went to the grocery store, and in every location there were a number of people coughing and sniffling. It seems to be a second flu season! I came home and said I’m never leaving again! Well, okay, I decided if I have to go to the grocery store I am going early in the morning, when it’s less crowded and when the sick people haven’t been able to drag themselves out of bed yet.

 

One thing I have been missing is church. When my doctor told me to avoid crowded places, I’d asked specifically about church, and he said, “I can’t stop you from living your life, and church is important, but if it was up to me I’d really rather you stayed home.” 😦 😦 😦  Honestly, I have been avoiding it for awhile, first because I was going to have surgery, then because I was recovering from surgery. I actually only got rid of my drains and able to dress presentably last week, and I thought about going last week, and I thought about going this coming week, since my system will be so flush with white blood cell’s from Neulasta, but even a healthy immune system does not keep you from catching a virulent virus. So I am going to stay home until this disease that is making everybody cough has run its course and is out of here. Please someone let me know when flu season is over!

My faith has suffered some without church. I have decided to try to remedy that in part at least with video and audio teachings that are so available on my computer and phone. I have been reading the Bible every single dingle day, but it hasn’t always given me hope. I don’t know if I’ve mentioned this before, but early on I started thinking about the phrase, “There are no atheists in foxholes,” which meant that when it came down to putting your life on the line, people would choose to believe.

For me, it’s kind of been the opposite. There is so much on the line, I feel like I can’t afford to make a mistake, either one way or the other. With every fiber of my being I so want to be certain that there is some higher purpose in my life, that there is someone holding my hand while I walk down this path and guiding me to a safe place. For this to all be due to random chance, for me to be completely powerless and without someone greater on my side, that is scary. God hasn’t been exactly chatty and reassuring lately, but I just keep plodding on and when I can’t exactly believe, I continue to hope.

So that is it. Day One of chemotherapy. Day One of twenty weeks. The fun is just beginning.

Breast Cancer Journey: Dear God, what do you want from me?

16196717_10211607204321350_2071707470_oDear God, is there something I am not getting here? Is there something you want me to do that I might not have the energy to do after I start chemo? You wouldn’t, umm, be trying to kill me or something, would you?

No, I don’t believe that. But why would I? I have not taken this thing seriously since before my diagnosis, since my ho hum attitude toward being asked to come back for a second mammo and ultrasound after the first one. The terms, “I have cancer,” and “I have breast cancer” — I can say them, but they don’t really ring true. I can stand in front of the mirror and look at the mastectomy scars, and there is still some disconnect. Is that me? How did I get to here, on the other side of that mastectomy?

Also, I had a PET scan, and no cancer was found in my body after the surgery. Now I figure this doesn’t mean that there isn’t any, or they wouldn’t bother to torture me with chemo and radiation. And my type of cancer is sneaky. It is invasive lobular carcinoma, and while most cancer grows in clumps, this type of cancer grows in rows of cells, eventually turning into sheets of cells instead of a lump. It is insidious because it can be hard to detect. So while a part of me says, they have cut out all the cancer and now we are just cleaning up any stray cells, but that shouldn’t be too hard so I will be fine, another part of my is cautious and concerned.

So far my chemo has been delayed twice, and it is about to be delayed a third time. First I cannot seem to get rid of this surgical drain, and I can’t have chemo until after it is gone due to the possibility of infection. It seems I am out to set some sort of world record in surgical drain retention. As of tomorrow it will be seven weeks. Usually they are in for one to two weeks, occasionally as much as four weeks. The output on the drain needs to be below 30 cc’s a day before they can safely remove it, and mine is still averaging 50, occasionally dipping to a blessed 40. My surgeons keep saying, “Are you doing too much?” Well, I’m doing darn little (which you can tell by looking at my house), but who knows, maybe it is too much.

Meanwhile, the anticipation of chemo has been a pretty dreadful thing. I have been given a whole list of possible side effects, each one of which would lay me out on its own. I have also been given a lot of literature on chemo from various sources, and have found some measures that I can take to try to minimize those side effects, and have begun those. The doctors prescribe a ton of anti-nausea medications, including an IV infusion of one at the time of the chemo itself, so I am hoping not to have to deal with that. The mouth sores, the bone pain, those worry me.

What worries me most is the immunosuppression, trying to avoid getting sicknesses and infections. At least it’s not flu season, I told myself, but just then it seems an end of the season virus decided to make the rounds, and sure enough it hit my family. I was already in chemo mode, and I washed my hands raw, I used hand sanitizer wipes and gels after every contact with every surface, and I avoided getting close to people. It had hit my little grandson first.He is fifteen months old and this is his first real illness. Five days later his mom and dad both came down with it. They all live with me, so at that point I figured I was doing a pretty good job avoiding it. Under normal circumstances, I do have a really good immune system when it comes to upper respiratory infections. But a week later my system surrendered. I got a scratchy throat first, and as much as I tried to deny it, it turned into a cold.

Right now I am trying to baby myself. I am trying to stay in my room, on my bed. In fact, I am writing from there right now. I am trying not to talk, because it irritates my throat, and not to “do too much.”  I have taken antihistamines and expectorants to keep my bodily fluids from getting out of hand, and tylenol to keep the inflamation down. I have requested someone bring me greens to throw in my shakes, and I am taking all my supplements. I am just trying to minimize this darn cold so it won’t turn into a long, drawn out thing, and to get rid of this drain.

We simply have got to get this show on the road. I am hoping the anticipation of chemo is going to be worse than the chemo itself. I am looking forward to the day when I can say, well, we got through that. And in addition, this is really dragging out the time of treatment. As it is my disability payments don’t quite reach the anticipated end of my treatment, and that end keeps getting farther away. I talked to another cancer patient today. We were talking about supplements, and not being able to afford them, and the term she used was “financially crushed.” I thank God our medical insurance is pretty good, but I was unemployed and looking for a job when I was diagnosed, and I won’t be able to actually get a job until it is all over, and the place where the two ends don’t meet could be tough.

If I had to do it all over again, I think I would take money more seriously from my youth. I would try to like science more and English less. I would learn about money and how it works, and put that knowledge to work. Sometimes I watch shows about people with great careers, often instead of families, and I think how much easier their lives are. But that was not who I was, not who I am. Even to this day, my family means more to me than money. In fact, my family is the only reason I even care about whether I have money or not.

But here is what I would do if I had to do it over again. I would be a vegan right from the start and would raise my children that way. I have seen since I started a vegan diet that literally all my blood chemistry has fallen dramatically into line. Asked generally about diet, with no reference to veganism, my oncologist said that there is some evidence that a diet free of animal products helps protect from cancer (although he did admittedly say that during chemo he wanted to me just eat whatever I could). I would not drink sodas, at all. All of the cans are lined with BPA, which is implicated in causing a host of medical problems, including cancer and diabetes. Same goes for diet sodas. I spent so much of my life addicted to diet sodas in BPA lined cans.

I used to think, as I abused my body through junk food, that one day if I reached the point where it was possible that it would cost me my life (I had in mind sudden heart problems rather than an insidious cancer invasion), that in that moment I would regret every single unhealthy, unnecessary morsel or drink I put into my mouth, ever. I would think to myself, why don’t I just stop now, so I don’t have to come to that day? Why, really, why? In my heart of hearts, I think there was a bit of a self destructive impulse in there. But there is one thing I know for certain, and that is that I don’t really know myself all that well.

Anyway, this is where I am right now. In limbo, circling the field, waiting to land. It’s getting to be really old, too. So, God, if there is something I need to get done before I head into chemoland, could you please give me a bit fat hint? I’d appreciate it.

Or maybe there is just some wisdom I can’t see. Maybe my chemo was delayed twice, because God knew that sometime in that third week, I would come down with a cold, which I am not allowed to do while I am having my treatments.

Who knows? But whatever it is, could we please just get a move on? And make it an easy journey, please, God?

As for the rest of my life, it hasn’t been going all that well. Since January 11th, I have had three, count ’em, three surgeries. The first one, the major one that required hospitalization afterwards, was okay. The second one, which was to remove some dead skin, I have actually characterized as fun. I had sedation rather than full anesthesia, no breathing tube, and they woke me up in the operating room right after surgery so my surgeon could talk to me. I woke up in the best mood ever! I wanted to party! More to the point, I wanted to eat. Everything. The surgery was performed in San Francisco, because it was an emergency surgery and that is where my surgeon was working that day. I asked my husband if we could go to Fisherman’s Wharf on the way home. It had been an afternoon surgery, so I had gone for a very long time without eating, and I was hungry. I could taste that crusty sourdough bread that is like no other bread in the world. And crab. My little vegan heart wanted crab.

We didn’t go, and I don’t honestly remember what I did eat that day. But it was as though a switch was flipped that turned on my appetite. Having done so well for so long, I just wanted to eat. I had previously only wanted food when I was hungry, and then it was just something to eat, but suddenly I was thinking about food all the time, and I was eating stuff I didn’t even really want or like in an effort to satisfy this craving … which hasn’t gone away, if you were wondering.

Of course, I also had my appoinment with my chemo doctor right around then, and was told all the dietary restrictions I would have during chemo. I was also told I might not want to eat because food would probably not taste good. Well, that’s okay by me. I think. Perhaps I was making up for my anticipated losses by eating more food than I need right now. Nevertheless, I am struggling to bring this under control, because it is not healthy.

Spiritually also I have been suffering. God is so far away! I told him the other day, if you want me to keep believing, you are going to have to start talking to me. No word yet. In all honestly I haven’t talked to God much either. I read about him, think about him, learn about him, but I haven’t actually been talking to him. This is a big fat heavy duty subject that I’m really too tired to go into. But it’s just another area where I’m struggling.

Not unusual, I don’t suppose, to struggle with some things in these circumstances. I do appreciate your prayers, as always, and your love. That is one thing I have had in abundance in my life, love. So thank you all for that.

Hope to be back soon with progress and good news!

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.