Thanks to those who are still visiting, and especially to new followers, but in an effort to consolidate my life, I am trying to move all my blogs to my new website. Aptly named Seekers Road, it includes all that I seek, from my missing daughter to health to truth and purpose.
My blog is moving once again, but I promise this time is the last time. I am placing all my scattered bogs and endeavors under one umbrella, so hopefully I won’t have to put it through any more soul searching and switching in the future.
My new website is Seeker’s Road, and I hope you will visit and follow my blog there. Linked from that website are my associated sites, Seeker’s Road Essentials and Dear Michaela. Most content from Dear Michaela will now be appearing on Seeker’s Road, but I really hope you will follow my essentials page. As I mentioned in a previous blog, I think that I have some pretty excellent products to offer through dōTERRA, as well as health and wellness tips.
Thank you so much for your support.
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.
For those of you who insist that I am so strong, so brave, yada yada, I thought it might be educational to tell you to what depths my soul can cower, and the relatively small things that can drive it there.
We have had a heatwave here in the San Francisco Bay Area over the last few days. For some reason my air conditioner thought this would be a good time to stop blowing cold air, and because it is a holiday weekend there is nobody who can fix it before Tuesday, or possibly before September 14th. Now anyone who knows me can tell you that I do not like heat. My maximum comfortable temperature is 72 degrees, with a breeze. So you would expect me to be uncomfortable in the unusual 110 degree weather we have been having. My bedroom, which I like to keep no warmer than 69, has been running between 85 and 90.
No surprise that I would have a negative reaction to this heat, but the kind of reaction I have had has been extreme, even for me. I sit in my room, and even with a fan blowing right on me, I feel as though there is just not enough air to breathe, and I descend into this dark claustrophobia. I fight against it by sleeping as much as I can (which is a lot actually), and by distracting myself. I was having trouble keeping track of the action on the TV show about the Irish Revolution I had started watching, so instead I thought it would be a lighthearted romp to watch a documentary about Timothy Leary and Ram Das and death. Now that really took me to some dark places.
I seem to have been thinking a lot about death lately anyway. I have picked up any number of books on the subject. I am reading two memoirs by Kara Tippetts on her journey through breast cancer and death. Somehow I came to be in possession of the Tibetan Book of Living and Dying and Preparing to Die by Holecek. I’d seen an upcoming seminar/webinar with Pema Chodron. The website didn’t say anything about the subject matter of the seminar, but these two books were listed as prerequisite reading so I picked them up, even though chances are slim I will attend the seminar or webinar.
Also in the last few weeks when I have experienced pain severe enough that it made me want to vomit, so persistent that I was unable to sleep. I have developed a new appreciation for those who say they would rather end their lives than live with their disease.
It’s all kind of challenging me, to tell you the truth. I have said for years, for always perhaps, that I am not afraid of dying. I have even said that I see it as a great adventure. But you know, maybe I am a bit afraid. In my brief perusal through Preparing to Die, it appears that Buddhism has some pretty specific ideas about what happens after death, and what you should do there. That surprised me, because I guess I’d always thought of Buddhism as being kind of non-religious. Well I guess that goes to show how much I know.
The God of the Bible, the Father of Jesus, now that’s another thing. I have spent a lot of my life pursuing him or being pursued by him. I had always thought of him as someone who loves me, but in recent years I have seen a lot more of the harsh, judgmental God when I read the Bible, and although I have a hard time believing in a God who is not far nicer than I am, the possibility has instilled some fear into me as well. This isn’t a serious, over-reaching fear, but it nibbles at the back of my mind. I have my own ideas about what happens after we die, but they really are my own ideas. Where they came from I don’t know, but who am I to have ideas? No one. Why would I listen to myself?
Then too there is just the physical part of dying. From all I hear, it is generally painful. I think my mother’s death, from emphysema, may be among the least painful, but it was replete with the other difficult aspect of death, the cutting off of breath, that thing that I have felt as a shadow over me in this heat.
Of course, I can never confine my suffering just to myself. So I have had to think about all those people who live in those unbearably hot countries with no air conditioning even to fix. I think about our young soldiers in the middle east in their monstrously hot uniforms. I think about all those people who suffer chronic pain. HOW DO THEY DO IT? I want to know. And people call me brave simply because I keep plodding along the course I have been given? Well I would not be doing that if my toe was broken, you know, and yet I have known high school students who ran cross country competitively with broken toes.
I am not strong. I am not brave. I’m really kind of an overly dramatic whiner. Anybody who tells you different has never met me!
Praying right now for a cool breeze, and more air. And an air conditioner repairman so this doesn’t happen again.
What is needed right here is a big eyes-crossed emoticon. But I’m too tired to find one, so you will have to make it up in your head.
This has been one crazy week.
On the bad side, my neck/shoulder pain has continued. I finally was able to figure out that it happens whenever pressure is put anywhere in the neck/shoulder/back/front region, on either side, although the pain is only on my left side. You can pretty quickly deduce that this is a condition that does not allow much rest. Just leaning back on the couch triggers it, and lying down in any way or shape, on either side, or front of back, triggers it. If I find a position that puts less pressure in these areas, it seems to involve odd neck positions, and that triggers it too.
So here is what that has looked like. At night I go to sleep and within a few hours the pain has reached the point where I have to get out of bed. I may not necessarily wake up for this. One night I found myself sitting in the kitchen chair with no memory of how I got there. Other times I wake up for the initial leave of the bed, but wherever I wander, I keep dozing off, as in my head flops over, I walk a little unsteadily, shall we say. Sometimes I catch myself starting to fall off, whether I am standing or sitting. One of the things that helps the pain is standing in the shower, so I have done that a couple of times. Last night I kept catching myself falling asleep standing in the shower. With just a few hours of sleep at night, I have been exhausted in the daytime as well. With only one exception, I haven’t been able to take a nap because as soon as I lay down it starts hurting and I get up again.
Needless to say, I have not been very productive this week, with two exceptions. The first is that on Friday I actually made it to a coffee shop after radiation and wrote for awhile. This was not due to planning and discipline, but to a stroke of inspiration I had on the way to radiation. The last chapter of my book started falling into my lap, and I knew if I didn’t get it down I’d lose the heart of it. I wrote on my iPad rather than my laptop, since I had not planned for this, so it was awkward, and I didn’t complete the chapter. I need to work on it some more, but I have allowed myself to put it off a few days because I know I am so tired I could not do it justice. But I was happy to at least make a start on this promise to myself.
This week I also hosted my first dōTERRA online class. It is a week-long class with ten participants, and I have to say, it has been a lot of work, and I have been a little dazed and confused for part of it, but it has actually been fun. I have made some really fun mistakes, like the time that my computer continued broadcasting live for quite awhile after I thought it had been turned off. I still have not watched it to see just how badly I embarrassed myself, but I know I whipped my wig off and sat down at the computer, and that I caught on video my comment that I had just slathered myself in marijuana, referring to the anti-inflammatory cream I have with cannabis trichomes, which I used to try to stop the pain. Not available through dōTERRA, by the way! Didn’t work either, just as the oils I did try did not work, and the Motrin does not work, and the muscle relaxants prescribed by the doctor on Friday did not work. Well, the muscle relaxants enabled me to get a few hours more sleep than I have been, but they did not prevent me from waking up in pain.
Nevertheless, I have discovered that what those dōTERRA people say is true: I actually do love this stuff, and I do love sharing about it. And I do love the people I have been sharing with. Some I know, some I know only from Facebook, others I don’t really know at all. When I set up the class, I said I had room for ten people to participate, and these ten people asked to be included. They actually all seem to have been showing up for the classes, whether live or the recorded version available later. They have been wonderful and supportive and kind. They have told me I am beautiful, even though I can see the video broadcast of myself and I am horrified! They have told me that I am doing a great job, even though I find myself reading from a paper and still stumbling over the words, whether from exhaustion or natural lack of talent. But I have really appreciated their kindness. Really.
Other bad things have been happening in my body recently as well. Whether they are related to my pain I don’t know. But I have been puffy, like steroid puffy, even though I am no longer on steroids. My fingers have been swollen, and so have my feet and ankles. The neuropathy left from chemotherapy has been more pronounced. Here is where the dōTERRA did supply some relief from discomfort, as the area around my toes was numb and inflamed, and a good application of helichrysum and frankincense in fractionated coconut oil made them feel much better. The general inflammation, however, has been pronounced, and could well have something to do with the pain I have been experiencing.
I need a deeper change, however, and I know that. I have been eating terribly. I have been eating very unhealthy food in unhealthy amounts, and I feel awful. I know that I also need to take control of my diet and my life because of this disease. It seems as though every week I run into someone whose cancer had beat cancer once only to have it return a few years later. That second visit is generally a lot harder than the first. Often, in fact, it is fatal.
So I am back to my vegan diet, and I will let you know how that goes.
Spiritually it has been an interesting week as well. While I was experiencing discomfort during one of my radiation treatments, I closed my eyes and tried to go to that place where I danced with Jesus on the water. (For those who are new, this is an image my pastor gave me when I was first diagnosed, of Jesus reaching out to Peter and inviting him to walk on the water with him. I have visualized that during some of my more difficult times, only rather than walking I found myself dancing on the sparkling Sea of Galilee.) Only when I tried this time I couldn’t do it. I couldn’t get out of the boat, because I knew I would sink, because I knew I didn’t have the faith that would allow me to walk. So I sat in the boat, and Jesus came and sat right outside of it, both our arms resting on the side, and we talked. “Well, you can’t really blame me, can you?” I asked. I’m not sharing them again here, but I have my questions and Jesus knows what they are. I remember some years ago when I brought them up (again) to one of my pastors, he said,
“Sharon, do we have to dance this dance again?” And I guess we do. I am locked into it, seemingly for a lifetime. I spin and spin and become dizzy, and can no longer tell which way is home.
I have given God ways to free me from it so I can rest in his arms forever. “God, please just let me have one full night of pain-free sleep.” Such an easy thing for the creator of the universe, yes? No, I guess not. It probably wouldn’t work anyway. I would probably just say, well, I got better. It was time, and my body healed my injury. Why would God give me a chance to fail and go back on my word again? But okay, this hurts and I’m tired.
I do see another doctor on Monday. My radiation oncologist prescribed the muscle relaxer I started taking last night. So by process of elimination, by Monday we will be able to say say it’s not that, and move on, and hopefully find what it is and what needs to be done. Unless God or my body chooses to heal it first. Either way is fine. The faster way is better, whatever that is.
So that’s what’s up right now. Thank you all for your support! Love to all of you!
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.
I had my last chemotherapy treatment today. I made it through 20 long weeks! The staff and my nurses at Epic Care were wonderful, as always. As I finished my infusion they came out with pompoms and an award and gave me a cheer. It was embarrassing, but fun! The woman sitting next to me today was having her very first chemo infusion. She had the same disease, and the same chemo regimen. I was really happy to tell her that it was nowhere near as bad as I had feared it would be. The drugs are good. Take them and you won’t suffer from the unremitting nausea and vomiting chemo used to be known for. She had her concerns and had done her research, and had a good plan. Then I told her how wonderful the staff at the clinic were, and how they made chemo actually pleasant. For some reason everybody, including the staff, laughs when I say that. But really, the infusion is not painful or uncomfortable in itself. For me it was a time to relax, read, nap, be taken care of.
I expected to dance out of my last chemo and start celebrating immediately. I was given the all clear to enjoy some foods that have been denied me for awhile, and I considered that I needed to go out to a couple of restaurants and do that. I guess I forgot that on the last day of chemo I actually received chemo! It decided to remind me that it wasn’t all pleasant. Very, very tired today, a little achey, even a little nauseous. My brain has turned to complete mush. I can’t tell you how many times I have walked out to the other room today, only to say, “Why am I here?” once I got there. But I know by tomorrow I will be feeling better for the most part. In a couple of days I am starting a cleanse to get all the toxins out of my body. The happy dance is coming soon.
I was glad to have a woman having her first chemo sitting next to me this morning. If there is one thing I want to come out of my experience, it is to be able to say to others who are heading into it, “Don’t be afraid.” Yes, there are side effects to chemo, but for most of us, most of the time, they are manageable. Life goes on, with a few extra naps, and a few less food choices.
I had ordered a new necklace through the internet, and it just arrived today. It is a mommy and baby elephant. Have I mentioned how much I love elephants? Probably not. Well, now you know. Better yet, it is made of dragonglass! More commonly known as obsidian this side of the Seven Kingdoms, dragonglass kills the Others, the White Walkers who are coming to destroy the world. Interestingly, it created them as well, as when it was plunged into the hearts of humans that is what they transformed into. In the opening episode of this most recent series, those who were reading over Sam’s shoulder also discovered that it is a cure for greyscale, a fatal disease in which all of a man’s (or woman’s, or child’s) skin is turned to stone. I was planning on slaying a few demons and being healed, so a little bit of dragonglass coming along right now can’t hurt, can it?
So here is my current plan. I am going to spend every day marking how much better I feel than the day before. In between chemo and radiation, I hope to be able to recapture just a little bit of strength in my muscles. I am going to mark each and every way I feel better. And I will spend a little time every day studying my hair to see how it is growing. Already I have a blanket of peach fuzz on my head, as you can see in the above picture, some of it long enough to make little drifts over the top of the temples of my glasses! I have gotten to really hate scarves and head covers, so I am anxious to never have to wear them again!
When I get to radiation, since I have to be there every single day, I plan to take my laptop and go to a coffee shop afterwards. I don’t have LTE on my laptop, so I won’t be tempted by Facebook. I will have to concentrate on Word, and the two books I have swirling around in my head waiting to take form on the page. If you are one of my praying friends, or one who sends puffs of positive energy, I’d appreciate that now. I’m not sure which book to concentrate on first, and while they are swirling they are not fully formed. I need all the help I can get to bring them to birth. I am also taking recommendations for coffee shops in the Dublin area, since that is where I am having radiation therapy.
Meanwhile, as best I can, I will wait and see. I will try to live in each moment rather than in fear of the future. There is one thing I know, and that is that life can turn on a dime. You can wake up one morning and when you go to bed that night your entire world will have changed. Sometimes, those changes are even for good. I believe in those things. I’ve had a little voice in the back of my head that has said several times, “Something really good is going to happen.” I generally shush it, calling it wishful thinking, the fantasies of someone right before they drown maybe. But I’m going to listen instead, embrace it, be open to it. However big or however small, I am certain that something really good is going to happen, and I will be grateful.
Thank you all for your support through this part of my journey. It means more than you could know. I love you all.
In nine days I will have finished chemotherapy. It has not been nearly what I’d feared it would be. The side effects were subtle. The nausea was fairly easily controlled with medication. I got one mouth sore, and my fingertips cracked and peeled. I have a tiny bit of nerve damage in three fingertips on one hand. I had a lot of weariness, and a huge amount of paranoia, but I was okay. Soon I will get a vacation, and then radiation for five weeks, and then reconstruction.
I know a number of people with cancer, however, and for many of them, treatment for the disease has itself been a trip through hell. I know people who have been on the same drugs I have been on who were unable to continue them because the side effects were so severe: muscle aches, fevers, inability to even get out of bed, bleeding. A friend’s nephew experienced severe mouth sores and numerous apparent brain bleeds (small strokes they think) that had him living in another world, and had those who loved him thinking he might be preparing to leave this one. I have known of people whose bones were so brittle from the treatments that sitting on them caused them to fracture. From the treatment, and from the cancer itself, there has been unremitting pain.
You call me brave? You call me a warrior? I have not been in those trenches. If I am in the war against cancer, I am one of the people sitting in the air conditioned office. I am not on those front lines.
Beyond that, however, is the deepest darkness of cancer, and that is death. This is something I have not even really considered for myself. I know I am not going to die at this time, at least not from cancer. I know that at this moment I am cancer free and I am undergoing aggressive treatment in order to try to prevent its return. I know it can return. There is a 20 to 40 percent chance of that, and if it does, it returns as metastatic breast cancer, Stage 4, considered incurable. Treatable, but incurable. I’m not sure exactly what that means, to tell you the truth. But I have a friend who had Stage 3A breast cancer, went through treatment and was in remission. Her doctors told her she would not die of breast cancer, that she would likely die of something else. But then the cancer returned, metastasized to her liver this time. She was fighting it, was receiving treatment with Taxol, the drug I am currently on. We had many conversations about breast cancer, but then I didn’t hear from her for awhile. People always seem to want to encourage me. Nobody ever wants to tell me that they are not doing well. I just read yesterday from her sister that she had been admitted to the hospital. Her sister asked for prayers for my friend’s adult children, for her husband, for her siblings. But she did not ask for prayers for my friend, which told me that she had probably gone to the hospital to die.
Another woman I know, a delightful human being, who hired me for my first job back in the work force after having been a stay at home mom for a number of years, recently lost her battle against cancer as well. She’d fought a particularly aggressive form of thyroid cancer for a couple of years, and had well outlived her original prognosis. She encouraged me in my own battle, gave me helpful hints for dealing with some side effects of treatment. She was always positive, and when asked never really said she was not doing well. Recently she’d been diagnosed with breast cancer as well and underwent a lumpectomy. That doesn’t sound like someone who was facing a terminal diagnosis for another condition, does it? Then I heard she had gone to the hospital, and then released to home. Her mother came, her sister was there, and they stayed with her all day and all night. Perhaps it could be assumed, but nobody said she was dying, and I didn’t believe it, until the message came that she was gone.
It is so difficult to grasp how people can be so alive one day, and gone so soon after. It is so difficult for the body to be here without the animating spirit, never to speak again, never to hold the ones they love again.
It also brings home to me the fact that this disease I am fighting is not a trivial matter. It is deadly. I remember feeling so blasé about it all when I was asked to return for a second mammogram and ultrasound. Oh, it’s nothing, I thought. I remember walking from my car into the clinic, through the shaded tunnel, along the sidewalk with the squiggly path paved into it, and thinking, “Oh, wait, this might be an important moment,” and being both shocked by that thought and unable to really internalize it. I think I have carried that with me through this whole thing. Deny it and it will be okay.
I finally picked up a book I’d had on my shelf since before my diagnosis: When Breath Becomes Air, by Paul Kalanithi. This is the memoir of a doctor who died of lung cancer. I hadn’t been able to read it before, because I was not willing to look into that darkness. Then for some reason I decided it was time. The darkness had touched me, in friends who had been fellow warriors in this battle dying on the field. I began to feel a need to look into that place, to assess whether I would have the courage to face it if that time came.
Kalanithi was a neurologist, who had a fascination with the juxtaposition of the physical and the spiritual. He wanted in particular to understand death. He had obtained a masters degree in English literature from Stanford University. For his thesis he wrote about Walt Whitman’s quest to understand “the physiological-spiritual man.” He found no answers there, however, and decided to go to medical school. “It would allow me a chance to find answers that are not in books, to find a different sort of sublime, to forge relationships with the suffering, and to keep following the questions of what makes human life meaningful, even in the face of death and decay.” To this end, he chose the field of neurology. He witnessed much, but if he came up with “the” answers, I didn’t grasp them from this book. He knows now, of course. But he can no longer tell us.
What he did convey was how we might live life in the face of our dying. “Grand illnesses are supposed to be life-clarifying,” he wrote. “Instead, I knew I was going to die — but I’d known that before. My state of knowledge was the same, but my ability to make lunch plans had been shot to hell.” What do we do from day to day when we know there are not an inexhaustible number of them left? “Maybe,” he concluded, “in the absence of any certainty, we should just assume that we’re going to live a long time. Maybe that’s the only way forward.”
The book also teaches us a lot about the real essence of life and death, and that is love. Those we love, and those who love us. It’s the theme I return to over and over again in the face of my own loss of my nine-year old daughter to a kidnapping that remains unsolved almost 29 years later. Once we understand the actual fact of loss, we understand what an act of outrageous courage it is to love. But at the same time we can see the beauty of love in a way we couldn’t before. During the course of his illness, Kalanithi and his wife decided to have a child together. The last words he penned here were for his daughter:
Oh, what an ache in those words. His daughter will not know what she is missing, but here she will find it. But they capture the essence of love, and the essence of loss. I have though many times that I am not afraid to die. I know I cannot say that until I face death myself. But if there is a fear, if there is a reluctance, it is here. His joy is sated? Does not hunger for more? But how can that be? How can your heart not grasp at that joy, at that love, desire an ever-deepening infilling? How can you not be unwilling to stop, to ever let go?
The last part of the book was written by Kalanithi’s wife, Lucy, after his death. In many ways, this is my favorite part of the book. She wrote of Kalanithi’s purpose in writing this book: “He wanted to help people understand death and face their mortality…. ‘That’s what I’m aiming for, I think,'” she quotes him as saying, “‘Not the sensationalism of dying, and not exhortations to gather rosebuds, but: Here’s what lies up ahead on the road.'” Did he fulfill that purpose? Well, yes and no. I don’t think any of us can be prepared for this journey until we are on it ourselves. But it helps to know that others have gone through it before us, and have found courage along the way.
His wife spoke of their love. The marriage had been a bit rocky before the diagnosis. They were both medical interns with very stressful schedules. But they pulled together. She wrote, “At home in bed a few weeks before he died, I asked him, ‘Can you breathe okay with my head on your chest like this?’ His answer was, ‘It’s the only way I know how to breathe.'”
And she wrote of the impact of living with life and death.
This is a special gift, honestly. For those of us who are living who have been touched by death, life assumes a different color and texture. We see it through the stained glass prism of having experienced loss and death. If there is a gift, an understanding, that I could pass on to my children, this would be it. I have two daughters who tell me I have to live forever, but regardless of when or where or how, I know I won’t. When I do leave, I want them to be strong. I don’t want to leave until they have all that they need in life to survive, and having that, I want them to be able to see through the best colors in the stained glass story of our love. It is possible to cave in the face of death and loss. It is possible to turn that prism into something dark, comprised of fear, anger, hurt. But in the natural course of events, that prism actually brings a new beauty to life. You know if a sunset lasted forever, you would not be drawn to it as you are. It is because you know it will be gone quickly that your desire is to soak it in, make it a part of yourself. In that way, its fleeting beauty will become eternal within your heart.
Lucy Kalanithi also spoke of her husband’s courage:
This is where I think I fail. I do not cry. I did not cry when I was diagnosed. My youngest daughter was with me, and her eyes filled with tears, but mine didn’t. Somehow I think perhaps I am not fully alive, as Kalanithi was. Many years ago I told my therapist, “I feel dead inside.” “Well, how did you feel when you were feeling?” she asked. “Like hell,” I replied. “That’s what the problem is,” she told me. “When we feel bad enough for long enough, we shut down our feelings.”
It’s self defense. It’s helpful. When I had my mastectomy, a number of nerves were severed in the surgery. I still have numbness, and it bothers me just a little bit. Funny enough, places that are numb can itch, but then can’t feel the scratch. For the most part, however, I have been really grateful for it. My post operative pain was far less than I’d thought it would be, and I am sure this is why. “Can you please sever the nerves?” will be my standing request whenever facing surgery, and I will only be half joking. I don’t like pain. People are always telling me how brave I am, but it’s not true. If I was brave, I would be able to embrace the pain. I wouldn’t spend my life running from it. Before the day comes when I do die, my desire is to make that journey into the storm of love and grief in the center of my heart, and set it free. I want to do this for myself. I want to do this to fulfill my purposes here on earth. I want to do this for my children. I want to do this to teach my children the most important lessons in life:
How to live.
How to love.
How to let go.
How to die.
Life is horrendously fearful. Life is gloriously beautiful. It is not to be wasted. It is not to be squandered. It is not to be hidden under a rock. We need to let our spirits do what they want to do, and that is to shine. That way we will have a light when we wander through the dark places, for ourselves, and for others we may help guide. I am not pretending to be there. I am not pretending to have the answers. But what little I have, I will share.
On the inside cover of When Breath Becomes Air, I scribbled a couple of lines. Whether they came from the pages of this book or elsewhere I don’t remember. But for my friend, for each and every one of us, on one near or far day, I speak these words:
In peace may you leave the shore.
In love may you find the next.
Blessings to you all, my friends.
p.s. Just as I was publishing this blog, I received news that my friend had passed on. God bless you, Carla. I will miss you.
While on the outside these are kind of scary days when many things in my life are uncertain, on the inside I feel like something is coming alive in me. It is like a bubbling up inside of me of joy and excitement. Only people who have followed my blogs for a long time are likely to recognize what I mean when I say this, but the ocean waves have set me on the shore once again, and outside of that water I can see the brilliance in color and clarity of the world around me. There is a song in the distance that was muffled before, but now calls to me.
I will write more about this in days to come, but the bubbles just wanted to get out and be known. Enough for now.
Shine little light! Grow bright!