We went to see Dad in April, just the kids and me. It was a good visit, just a few days, but long enough for us to spend time together. We actually talked, which is new, and was really nice.
He’s actually doing very, very well. He had a scan last week and got the results on Monday. Apparently, his therapy is doing what it’s supposed to do–halting the tumors’ growth and even shrinking them a tiny bit. They’re small anyway, with the largest only 10mm now, so that’s good news.
And the side effects are manageable: he’s lost his sense of taste, gets very tired after lunch, and gets blisters on his palms, and his hair is going completely white. He also got an itchy scalp this time around, which is new. But his appetite is good, and his mood is good as well. I think he’s grateful that the treatment is working so well, and that helps keep his spirits up.
He’ll be moving house this week, which is a big deal for him. The house he’s moving from is one that he and my stepmom built together over 30 years ago. I remember when the land was just that–a piece of land, full of wild grass and random trees. Now it’s a home, the home where I grew up. I’ll miss it, and so will he, but it’s too much maintenance for them anymore. So they’re moving to a single-story place with a smaller yard and vinyl siding, so less upkeep. Next time I visit (in July or August), that’s where they’ll be. Pretty weird…
I’m noting how this blog has changed course in the last few months. I’d originally intended for the blog to be thoughts from a Quaker perspective, notes following meeting for worship, meditations, peaceful notes, and the like. Since my dad’s diagnosis, though, most of my thoughts during quiet times go toward the topic of his illness.
In 2009, I started attending a “Spiritual Formation” course at my Quaker Meeting. I attended for two years and grew very close to several of my fellow attendees. Over the course of the two years, I shared with them so many things, not the least of which was my last pregnancy and the joyful arrival of my son.
But I also shared with them my intense desire to do something useful with my life. I’d always felt the urge to help, and I was blessed with a good brain and a strong body. However, having grown up in fairly chaotic conditions, I simply had no sense of direction at all, ever.
I went to college because that’s what everyone in my family did. I eventually majored in English (after changing many, many times to everything from Psychology to Business to Computer Science) because I had an inborn gift for language, and I knew I’d be able to graduate quickly. I went to grad school because I had no idea o f what to do after college, and academics was all I’d ever known. After grad school, I taught at the same university where I’d gotten my Masters degree. Spurred on by a lack of money to pay back my massive student loans, I finally left to pursue a career in technical writing, which was the only thing I knew an English major could do for money. I had wandered into all of it, every step of the way.
Only many years later, after moving across the country, then getting married, and then living overseas, did I even begin to wonder what I ought to have done, what I ought to be doing, what I will want at the end of my life to have done. I’ve been struggling with this question for years now, and I shared that struggle with my Spiritual Formation group during a fairly emotional (but gathered) meeting last year.
I can’t walk back through the exact process of how I arrived at the idea of working with patients at the end of their lives, although I have tried. I attempted this very thing in one of my personal statements supporting my application to the MSW program. The idea just sneaked into my head one day and wouldn’t go away. After years, I finally began to listen to it. And after even more time, I finally decided to explore it in practical ways.
I did research online. I made an appointment with a real, live MSW who’s working in this field, and I talked with her for hours about the job and the options. I’ve attended seminars on death and dying, and I’ve thought long and hard about this decision. At long last, I feel I’m approaching a sense of clearness on this topic. It’s been years in coming, but I feel it–I think I can perceive it in the distance.
I’ve been accepted, by the way. Accepted to the MSW program. It’s a three-year program with two summer internships, basically. I start this fall and am already quite eager to get going.
Perhaps that’s the direction that this blog can take from this point forward. Like my own life, the blog was a bit wander-y in the beginning, but I’m now starting to feel it coming into focus right before my eyes.
I’ll keep you posted on not only my dad’s ongoing battle with kidney cancer, but also my simultaneous progress through the MSW program as I (possibly?) learn how to work with the dying and the terminally ill. Might be interesting.
My thoughts have been fixated lately on how much both my dad and my kids will miss by not having each other in their lives. Of course, it’s early, but my son is only 1, so unless we get very, very lucky, it’s unlikely that they’ll know each other at all. I’m going to spend a couple of months down near my dad this summer to at least give my daughter a chance to build some more memories.
He really does enjoy being a grandparent. I think parenthood overwhelmed him and was not at all what he’d expected. He was so young, still in college when he became a parent. But grandparenthood really suits him. I get the saddest thinking about how he’s finally truly enjoying his family, finally having the (mostly) joyful experience that he wanted from parenthood, and now it’s all being cut short.
His own grandfather lived to 98, and his father is still alive and nearly 90, so this was really unexpected for all of us. My dad worked with heavy metals his whole career a a plant engineer, though, and his oncologist thinks that might have something to do with it.
I’m trying to keep things in perspective. He’s 62, and he’s had a long and full life already. Four kids, 8 grandkids, a successful career in the military reserves and as a civilian, a beautiful home that he built himself and has lived in for over 30 years, and a long and happy marriage to my stepmother. It’s much more than many people can say.
Dad has started the chemo and has one more weekend to go on this round (it’s 4 weeks on, 2 weeks off for “as long as it works,” whatever that means). He’s lost his sense of taste and has had problems with his hands (dryness and cracking, I think) but is otherwise feeling good. They’ll take some blood in a couple of weeks to check his liver, and after one more round, they’ll do another scan to see what effect, if any, the drugs are having.
It’s called Sunitinib and is apparently a new thing specifically for certain types of cancer. It’s been approved in the UK for use in the National Health Service, which reassures me as they do a lot of research into whether a drug is effective before approving it.
Anyway, he seems OK. I’m hoping to go visit him in the spring. I’m also probably going to spend most of the summer down there, letting the kids see him a lot. My daughter, who is older but still in preschool, will certainly remember him, but I’d like for her to remember what he’s like as well. He’s a surprisingly wonderful Grandpa, given how hard a time he had with fatherhood. And if her memories are strong, then she might be able to pass some of them on to my son, who’s just over a year old. I do get blue when I think of the things they’ll all probably miss out on. I would very much have enjoyed him and my dad working on cars together.
Looking back at what I’ve just written, it’s probably obvious that I’m having a hard time allowing myself to hope. I’m trying, and I’m trying to hold my dad in the light, but it all feels pretty hopeless. I’m keeping busy, though, trying to work. I don’t think about it as often as I did at first. There’s nothing I can do, so I try not to let my thoughts wander there more than feels “right.”
One thing does make me smile sometimes: when I hold him in the light, I visualize my (very serious and old-fashioned) father sitting in the lotus position with a half-smile on his face, glowing with light. This is so unlike anything he’d ever do in real life, but it comforts me somehow to imagine him that way. In my visualization, he has a good sense of humor about the whole thing and is very light-hearted about the way he appears to me. That mental image has been a great comfort, even though it’s probably far from his actual mental state at the moment. He’s not the introspective or meditative type. But it is what I wish for him. I hope that someday he’ll be there, no matter how he gets there.
I found this poem online today and thought I’d share it. The author died a couple of years ago but was a guest on a recent re-airing of the American Public Radio program “Speaking of Faith.”
I hope to use it as a basis for meditation, myself. It speaks to me. I could not share it with my dad, at this point, anyway. He’s not yet ready to look this in the eye. But maybe someday.
for a friend, on the arrival of illness
Now is the time of dark invitation
Beyond a frontier that you did not expect;
Abruptly, your old life seems distant.
You barely noticed how each day opened
A path through fields never questioned,
Yet expected deep down to hold treasure.
Now your time on earth becomes full of threat;
Before your eyes your future shrinks.
You lived absorbed in the day to day,
So continuous with everything around you,
That you could forget you were separate;
Now this dark companion has come between you,
Distances have opened in your eyes,
You feel that against your will
A stranger has married your heart.
Nothing before has made you
Feel so isolated and lost.
When the reverberations of shock subside in you,
May grace come to restore you to balance.
May it shape a new space in your heart
To embrace this illness as a teacher
Who has come to open your life to new worlds.
May you find in yourself
A courageous hospitality
Towards what is difficult,
Painful and unknown.
May you use this illness
As a lantern to illuminate
The new qualities that will emerge in you.
May the fragile harvesting of this slow light
Help you to release whatever has become false in you.
May you trust this light to clear a path
Through all the fog of old unease and anxiety
Until you feel arising within you a tranquility
Profound enough to call the storm to stillness.
May you find the wisdom to listen to your illness:
Ask it why it came? Why it chose your friendship?
Where it wants to take you? What it wants you to know?
What quality of space it wants to create in you?
What you need to learn to become more fully yourself
That your presence may shine in the world.
May you keep faith with your body,
Learning to see it as a holy sanctuary
Which can bring this night-wound gradually
Towards the healing and freedom of dawn.
May you be granted the courage and vision
To work through passivity and self-pity,
To see the beauty you can harvest
From the riches of this dark invitation.
May you learn to receive it graciously,
And promise to learn swiftly
That it may leave you newborn,
Willing to dedicate your time to birth
My dad was diagnosed yesterday with metastatic kidney cancer–meaning that the kidney cancer that they operated on a while back has returned and is now in his lungs. Of course, the prognosis is not good, and very few people in his situation live longer than 5 years from the initial diagnosis, which was 3 years ago.
He’ll be starting some new form of chemo soon. He feels fine now and is optimistic about his chances of recovery–in my opinion a bit too optimistic, but I think I’m alone there. I’m quite wary of allowing myself to be at all hopeful at the moment.
My brother and sister are both seeming reluctant to talk. I guess they’re having a hard time digesting it. I know that I for one always expected him to be around for a very long time, based on his genetics. His dad is still around–a WWII vet–and his grandfather died at 98.
I usually cry when I think about it, so it’s hard to write at the moment. My oldest child doesn’t know, and I probably won’t tell her until we know more about the results of the chemo.
I’m thinking about going down for a long stint this summer to be near him. The plan is to get a place near his house, maybe a summer sublet. I want him and the kids to be together as much as possible while he still feels good. I definitely don’t want to look back later on and wish that I’d taken the time while we still had it.
I am so down about this. I very much wanted him and my son to know each other. He loves his grandkids so much and was so excited about finally having a grandson (after 6 granddaughters). I wanted them to do sports, go camping, etc. I’m so sad that most likely, neither of them will ever have that now. My son will most likely not even remember my dad, if things go as they tend to in these cases. He’s just over 60 years old.
Lately, I’ve started doing things to “get my life together.” I have things that I want to happen before I die, and I’m working on making them happen. One of them is that I get a career, one that allows me to help people, so that when I die, my kids will know that I did some good in this world apart from being their mom.
So I applied a couple of weeks ago to do an MSW–with a focus on end-of-life and palliative care–work that I think I might have a unique gift to do. Weird timing, considering the stuff going on with my dad. Eerie. But one thing that appeals to me about working with the dying is that in some sense, all the posturing necessarily falls away, and for once in our lives, we are forced to be real.
I’ve actually been considering doing this for years, but a (Quaker) Friend of mine passed away this summer from bladder cancer, and I got a lot out of helping him and his family in very small and unacknowledged ways as he made his final journey. My Friend told us in March that his scans were all clear (he’d had cancer in 2010 for the first time and went through chemo), and he was ecstatic. By early July, it had come back with a vengeance, to the point where he had to give up his responsibilities as chair of the Religious Education committee, which is where I knew him from. He died in mid-September. Six months from all clear to gone. Of course, he rejected chemo the 2nd time and went home to die with his wife and kids and friends nearby. By July, he was feeling pretty awful, and August and September were terrible.
The thing is that he was very open to the dying process even though he was relatively young and was leaving behind a very loving family and a huge circle of very close friends. He was an inspiration to me. When I last saw him in August, he seemed so at peace. He couldn’t get out of bed but hugged me so genuinely, held my hand, and told me good bye as if I were a beloved child whom he was leaving at boarding school. He was ready.
This thing with my dad: this is real. I want to experience it; I want to look it in the face and accept it for what it is (which I admit we don’t know yet–but I am prepared for the worst).
We got a snowstorm today, which always makes things seem a little unreal to me.
The thing with this nodules on the lungs thing is that I am so sad not for myself, but for my dad. I can totally sympathize with what must be his incredible sense of injustice. If this is cancer, and he runs the average odds, then he will be gone within 5 years. Possibly within a year or two, because the 5 years will start counting from the initial cancer, which was 3 years ago. And what will be his quality of life in that time? Who can say?
He saved all his life for retirement, and now he’s going to miss it. The biggest thing in his life that brings him joy is his grandkids–he’s great with kids as long as there’s no responsibility–he could actually enjoy his grandkids in a way that he wasn’t able to enjoy his own children. And now he’s going to miss seeing them grow up. He’ll never show them how to change the oil on a car, he’ll never take them camping, he won’t see their soccer games, he won’t get to do any of the things that he would LOVE to be able to do with them. He would’ve been a great and happy grandfather, and now that’s all been taken away from him. Plus, he and my stepmother wanted to travel. And that all makes me really really sad.
I say this because it’s likely that the prognosis is not good. I think we all should be prepared for the worst, which is that the disease will progress quickly, and/or the treatment itself (which I’m sure he will go with) might rob him of any quality of life in what time he has left. If anything other than that happens, it will be a blessing, a gift beyond wonderful. (I know I’m using traditional religious language, but I truly am not a traditionally religious person–it’s just a way of talking about these things because I have no other language to use here.)
That said, I am of course hoping very very hard for a miracle, for it to go against the probabilities, for his overall health and early detection to mitigate the odds in his favor. I am hopeful, but I also accept that there’s very little that hope or anything else can do at this point. What will happen will happen.
Knowing my dad, though, I can tell you that whatever happens, and whenever it happens, his “anger” stage is going to be long and painful.
I keep remembering a t-shirt i got him for christmas one year when I was a smart-aleck teenager. It was a sort of comical line drawing of a skeleton who was screaming, “What was i saving all my money for?” We all laughed about it, most of all my dad. Not a warm and happy memory at the moment, though, of course.
Well, this is really weird.
Last week, a scan found some nodules on my dad’s lungs. He had kidney cancer and had a nephrectomy three years ago, so they’ve been scanning him every 6 months to check for metastasis. He’s been in remission since then, and to be honest, I’d nearly forgotten that he ever had cancer in the first place. This news is kind of hitting me hard here.
I’ve found some information on the Internet related to the nodules, such as:
Some stuff in this article is not too comforting, although I do appreciate the first sentence very much. Bad news: larger nodules have a greater tendency to be cancerous, and he’s got one large one. But good news: most nodules overall are non-cancerous, and there are lots of things that can cause non-cancerous ones.
My husband also says (and he would know–he lost his mom to breast cancer when he was in college) that this should not be thought of as possible lung cancer. If it is cancer, then it’s most likely kidney cancer–some of the kidney cancer cells broke free and found their way to the lungs. So they’d be kidney cells growing out of control on his lungs, not lung cells.
Anyway, I just called and spoke with my dad. He’s obviously concerned but is educated about it (I imagine he’s been Googling etc.) and seems optimistic. He says he feels great and has a gut feeling that it’ll turn out not to be malignant. He described the many symptoms he had before the kidney cancer was diagnosed and says that nothing like that is happening now. Let’s hope he knows his own body. He’s in decent spirits. He also said that my stepmother is pretty upset.
Just a bit of news. I’ll update as more news comes in.