After Cancer: Who am I now?

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NOTE TO SELF

First the good news. The weather cooled off. It then got hot again, but in the meantime I got my air conditioning fixed. So I am no longer in that airless, claustrophobic place. It is amazing the difference it makes.

And then more good news. Today was my last radiation therapy! I have now had the surgery to remove the cancer, and the boob; I have finished 20 weeks of chemotherapy, and completed five weeks of radiation. I have hormone therapy ahead of me, but that’s a lifetime thing. Well, five to ten years, which is more or less the same as a lifetime. It’s a pill you take, so it doesn’t require daily or weekly doctor’s visits, and you don’t have to put anything off while you are doing it. So I’m kind of done with the cancer treatment itself.

And more good news. Radiation therapy could have been worse. 🙂 At the start of it I was experiencing pain, muscle weakness, and a very inflamed rash. Then one day I woke up and all those things were better. This was right after I’d posted about it on Facebook, so I am happy to give credit to all those wonderful people out there who I know are praying for me, and the one to whom they pray. Since then I’ve had another week’s worth of radiation, and I have a pretty good radiation burn under my arm, and skin irritations on my chest (the field is large because they found cancer in all eleven lymph glands tested), but I’ve definitely heard of worse reactions to radiation.

While I am happy to be finished with all these treatments, I think my overriding reaction is anxiety. This is not unusual I know, because I’ve had other cancer survivors tell me the same thing. The first question is NOW WHAT? I have spent the last nine months of my life working at the job of Cancer Patient. Now I’m at a loss as to what I am supposed to do with my life … along with feeling that I didn’t really accomplish what I meant to accomplish while I was being a Cancer Patient. But that’s kind of a lifelong feeling. I think I will have that feeling until I finish “my book” and get it out there, because I have known since I was six years old that this is what I am supposed to do.

I tend to be a little dense, and in recent times have suffered from a bit of a paralysis. And I’m just confused. Is it too much, God, to ask that you just lay out a path in front of me, shine a light on it, and say “go this way”?

Speaking of God, I do want to take a moment to thank my Pastor, Matt Lacey. At the start of this journey he prayed for me, and in that prayer he talked about God giving me faith for this journey, and used the story of Jesus bidding Peter to walk to him on the water as an illustration. That illustration has stayed with me through this journey, from start to finish. In some of the scariest moments I called up the vision of Jesus reaching out and calling me to walk across the water to him. I remember being surprised at how the water sparkled in the sun as I reached out my hand and stepped toward him, and then suddenly I was not walking on the water but dancing. I danced through a lot of scary places.

Then came the times when I called this vision up, but I could not get out of the boat because I knew I would sink. I did not have the faith to walk on the water. Instead, I sat in the boat, and Jesus sat outside of the boat, and we both held onto the side of it. I said, “Well, you can’t really blame me, can you?” Jesus was silent, just looking at me. There were many meetings like this, scattered in with the days when I didn’t go there at all.

Just a few days ago I brought the vision up again. This time I stepped out of the boat, ready to start dancing again. But I didn’t dance. I knelt.

Yesterday, I stood side by side in the water with Jesus, and together we silently watched the radiation treatment take place.

And today … today I had two visions actually. In one I reached my hand out to Jesus and he turned his back on me. And in the other, I stepped out of the boat, and Jesus took me by the hand, and we turned away together, and began walking together in a new direction. Lord, let this vision be true, because I need to have my hand held for awhile I think, cause I am still kind of weak in the knees. I need a big fat dose of faith and just plain courage. And motivation, and direction. Intelligence, wisdom. Energy.

The second cause of anxiety at the end of cancer treatments is whether or not it is really gone. One of the real blessings in any misfortune is the people who come into your life. That has been true of Michaela’s kidnapping, and that is true of my cancer journey. Many of these people are cancer survivors themselves. But among them are those breast cancer survivors whose cancer has returned. This is always a real risk when you have had advanced breast cancer, as I have. Nor is the five-year remission a real marker, as I have known several people whose cancer has returned between years five and ten, including one beautiful friend who passed away during the course of my treatment.

So what can I do to make certain I my cancer doesn’t return? Take care of myself, eat healthy, exercise. That sounds so simple, and yet can be so hard to do! Sometimes my lack of ability in this area feels almost like an urge to self destruct. But I commit myself to wrestling with this. The evidence specifically points to a diet free of animal products as most likely to prevent cancer. (You can check out the China Study, or I can just tell you that my doctor said so.) I am convinced that this is the healthiest diet, and it is also the diet my soul prefers. I was a vegan before I was diagnosed, but during chemo I found myself sensitized to a lot of vegan staples. Just thinking about them made me nauseous. I haven’t fully recovered from this, but I’ working on it. The other dietary guideline that seems painfully obvious is to avoid sugar. The test used to locate cancer in the body is a PET scan, and it uses irradiated glucose to do this because the cancer cells just gobble that glucose right up! Hello? Youdon’t have to ben an Einstein to put two and two together here. But still, it’s a battle I fight and don’t always win.

During my treatment I got a medical marijuana card, and during my appointment for this, the doctor told me that not only is medical marijuana excellent for relief of symptoms during treatment, marijuana has actually been shown to kill cancer cells through the process of apoptosis. He couldn’t, he said, tell me the correct dosage for this though.

And I use my dōTERRA oils, and nutritional supplements. A friend’s sister, who had Stage IV (incurable) cancer, was unable to tolerate chemotherapy. Instead she used dōTERRA oils and supplements, and ended up cancer free somehow or another. She most specifically credits the use of frankincense on the soles of her feet every day.  You doubt? Here is an article from the National Institute of Health about the use of essential oils in treatment and prevention of cancer: National Institute of Health on Essential Oils and Cancer

I get suggestions in my inbox regularly for other methods of getting rid of cancer, but that’s like listening to everybody’s doctor’s opinion on what you can and can’t do during chemotherapy. When I was getting radiation, the woman whose appointment was right after mine informed me that I was “breaking all the rules.” She said her doctor had told her that she could not wear fingernail polish during chemo or radiation. She’d had the exact same chemo treatments as I’d had, and I said I wore my polish to every appointment and neither my doctor nor my nurses had ever mentioned it. The next week she showed me her polished nails and even slipped off her boots so I could see her colorful toenails. Yay! Freedom to the people! She had also been told she couldn’t wear earrings or bracelets to radiation, while I wore both. You actually you only need to leave your necklace off for breast cancer radiation.

So I imagine that this road of finding out who I am after cancer will be like most others in life, scarier in the anticipation than in the execution. One way or another I will keep putting one foot in front of the other and I will end up on a path. Hopefully it will be the right one, and hopefully I will have the strength to follow it.

Oh, and one last piece of good news! My hair is growing back! Still needs a little more thickness on the top, but all my life I wished for the courage to get my hair cut really, really short. Well, now I have that really, really short haircut, and I just might keep it when all my hair is in!

Meanwhile, thank you all for your prayers and your support through all this. It means more than you can know.

 

Radiation therapy is NOT fun

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I can’t believe I have completed six days of radiation therapy already. That means only 19 days to go. Last treatment is scheduled for September 12th. And I have done nothing that I wanted to do, like take my laptop and go to a coffee shop to write for awhile after therapy. There have been a lot of busy days, a lot of disorganized days, and a number of painful days, but one way or another it just hasn’t happened yet.

But I want to whine a little, even though I know I have no real grounds for whining. Radiation therapy is nowhere near as enjoyable as chemotherapy was. Now I know chemo can be hell for a lot of people, but it wasn’t for me. It was somewhere I went once a week to spend a few hours in a recliner reading, writing, chatting, while being taken care of by the nicest nurses. In contrast, radiation therapy is a rapidly moving assembly line. First, it is every single day. Each session lasts from 15 to 45 minutes depending on whether or not they want ex-rays (which they seem to have wanted more often than not). I not only don’t get a comfortable recliner, I get squished into a cardboard-like mold to hold me still in the most uncomfortable of positions. And I’m not allowed to move. If I wiggle my toes a voice comes through the speaker telling me to keep my foot still.

Note that part about the voice through the speaker. There are two techs who take care of me every day, but that consists of asking my birth date, then tugging me into position on the table while speaking to each other in numbers. “98.” “73.” My primary relationship in this therapy is with a large machine that rotates around me while I lie on a table.

Once I am squished into that position, suddenly I itch in all sorts of places. My wedding ring feels like it has slipped too far down on my finger and really needs to be moved NOW. I suddenly realized that my muscles had been tense, which had lifted my back slightly off the table when they positioned me, and now it really wants to relax. Then even though it’s an open machine, as the larger part revolves to where it is above me, there is a moment of claustrophobic panic. But most of all, it’s uncomfortable. Even though they presumably made this mold around my body the first time I went in, there are ridges where ridges should not be, and there are parts that were just never comfortable to begin with.

Perhaps coincidentally, I developed a pain in my left neck and shoulder around the fourth day of therapy. I will admit I don’t have a high tolerance for pain in the first place, but this is a very painful pain. Occasionally it has been painful enough that it has made me want to vomit. During the day it is somewhat relieved, and even occasionally subsides completely, with large doses of Motrin. But at night it always becomes severe, and is not relieved however much Motrin I take. I haven’t had a full night’s sleep for five days and it has gotten to the point where I am actually afraid to try to sleep, because I don’t want to wake up in pain.

Not due to the radiation, the techs told me. The area of pain is immediately above the area they irradiate but not within the field. But they suggested I tell the doctor when I see him on Friday anyway, which I will. It could be due to spending large amounts of time in unnatural and uncomfortable positions, they said. So maybe I can blame radiation. But on the other hand, it could also be from picking up my grandson wrong, or from sleeping in a strange position. Goodness knows I have tried to figure out how to improve my sleeping position, but that has been difficult considering the fact that moving even a fraction of an inch causes great, shooting pain. I have kind of self diagnosed it as maybe a pinched nerve in my neck, although the muscles were quite tender when my daughter tried to massage the area, and I’m not sure if that would happen with a pinched nerve. But whatever it is, it hurts, and I am tired of it, and when I lie there in those odd positions for radiation, my shoulder starts to hurt and I think, oh no, this is making it worse, but there is nothing I can do about it.

Then, too, I have thought about pain itself. I have thought about those I know who have died of cancer, who have reached excruciating levels of pain in the process of dying. And I think, I can’t even tolerate a little shoulder and neck pain.

So far I have been just as tired from radiation as from chemotherapy, even before the pain in my shoulder started robbing me of my sleep at night. I was taking three or four naps a day before I started being afraid to lie down.

But it’s just a really impersonal treatment. It’s annoying, uncomfortable, and lonely.

I guess it’s going to be up to me to transform the experience. Twenty percent of the treatments are finished now. I hope I don’t waste the rest of this time.

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!

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.

What if God’s purposes are bigger than your answered prayers?

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The title of this blog was taken from a Facebook status posted by the associate pastor of our church. He and his wife are currently experiencing a heartbreaking situation, as she is pregnant with a baby who is not expected to survive more than a few hours after birth. What is in their minds and hearts? I can only guess. Thousands of prayers are being offered for them, for their baby. What are they expecting to happen? I don’t know.I can only imagine.

But I understand the sentiment of this statement, what if God’s purposes are bigger than your answered prayers? I understand it because when I was diagnosed with breast cancer there were people who wanted to (and did) pray for a miraculous healing. But I knew in my heart that was not to be. I knew that this was a journey I had to take, for whatever reasons, for whatever purposes. Maybe it is for myself, to learn, to grow, to become the person I am supposed to become. Will cancer weaken me, or will it strengthen me? Who knows, I might end up competing in the Tour de France after it’s over! Or I might just be in my own individual spiritual Tour de France. Maybe it will touch other people’s lives. My children’s, for certain. I have seen this already in a few ways, for better, or for worse which will end up better, if you know what I mean. Maybe there is one stranger out there whose life I can end up touching through this. Who knows?

But this I know, we were not promised a rose garden. Bad things happen, even to good people. Life is hard sometimes. God has works to perform in our lives and in our hearts, and like the works of a surgeon or an oncologist, those works are not always pleasant in the moment. But they are for good, for a purpose beyond what others may see.

We can see it, though, if we are honest. We may not understand it, but we can sense it. We know when God is moving in our lives, because even though we may not like what is happening, even when we might sometimes have sleepless nights, tears, even a panic attack, behind even those things there is a sense of peace.

I am afraid of what I am about to do, it is true. I’m not sure where I am going or where I will end up. But behind it all, there really is that sense of peace. I have had a whole lot of practice in resting in that peace while toiling through the deepest, darkest places in this world, as most of you know. This is just another thing.

 

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.