Coming Out of the Cancer Closet

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Today is my birthday. I am 61 years old, which means I have reached one more birthday than did my late, beloved husband Isaac. It would not be such a milestone except for one odd fact—just as Isaac was diagnosed with cancer in his sixtieth year, so was I.

I don’t have the same cancer as Isaac did, nor the same prognosis. It’s a lymphoma, a liquid cancer, so there are no tumors to be removed. They tell me this kind of cancer is treatable, but not curable. I’m hoping that means I have years and years ahead of me, but until they see how I respond to treatment (I’ve already had two rounds of chemo) no one knows. They also tell me I’ll feel better after a few treatments, but I’m still waiting for that to happen.

I haven’t written about this publicly before because it’s been hard to know what to say. I have drafts of this post that sound cranky and angry, and some that sound maudlin. Both are true reflections of where I’m at, although neither by themselves are entirely useful. This is my new normal, so I guess I might as well get used to it. However, the new normal is not much fun. I feel like I’m getting the flu, or have the flu, or am getting over the flu, pretty much all the time. If you’ve ever tried to get stuff done when you have the flu, you can imagine what a pain it is to get through an average day. It’s really getting old.

On the upside, I’m glad I moved to Oregon before this hit me full force. Had I waited only six weeks longer, I wouldn’t have been well enough to drive cross-country. I also get to joke that moving to Ashland was on my bucket list—good timing! Ha, ha. But more importantly (and seriously) the medical community here is quite good, very collegial. They all talk to one another. I really feel like there is an entire team on my side. And of course, they did something that doctors in two other states with fine medical communities could not, which is give me a diagnosis. I’ve been having symptoms periodically for years and years, but no one could figure out what was wrong. It turns out that’s not uncommon with this type of cancer. The cosmic joke becomes that all the time I was nursing Isaac through his cancer, I had cancer myself. That irony continues to boggle my mind. No wonder I was so tired all the time. And I thought it was just overwork and stress.

On the downside, I’m living alone now, which is hard. I got ill so quickly after I arrived here, I wasn’t able to develop much of a friendship or support network here, either, which has also been hard. I hope if they are correct about my feeling better in a few months I’ll be able to network more. But right now, I feel pretty isolated. I am so grateful for my online friends, and long-time friends (and family) who keep in touch with me online. You have been an immense support for me as I muddle through this.

So if you’ve written to me and I haven’t written back, or were hoping I could do something for you but I haven’t been able to, I hope you understand.

Yes, I will accept all your prayers, good thoughts, and healing energies. This has all been pretty depressing, but it has let me come to the realization that I’m not ready to give up yet. So I will accept all help to keep me going. Send away!

But some things I do not want from you. (Here’s the cranky/angry part:)

Please don’t give me any advice. Please. Don’t tell me what I should be eating or drinking, don’t tell me what treatment I should be getting, and don’t tell me what cured Uncle Joe’s or your sister Carol’s cancer. Please do not tell me these things. It’s not that I don’t appreciate your concern. I know the advice and recommendations are being given from a loving place (mostly; some people are just busybodies). But it upsets me, for several reasons.

The first is because we got tons and tons and tons and tons of advice and recommendations when Isaac was sick. I got a pretty darn good education on cancer then, and I really don’t feel the need to be told everything all over again. My Google-fu is strong. I’m a good researcher; Isaac used to tell me I was a better Internet researcher than he was. It is wearying—nay, exhausting—to be told the same thing over and over and over again. I appreciate your concern and love. Send that, not advice.

The second reason is that we investigated a lot of stuff and tried a lot of stuff with Isaac, and he died anyway. And that upsets the hell out of me. He died, dammit, despite the fact he had a positive attitude (he was extremely cheerful and optimistic) and despite magic, and despite conventional medicine and despite alternative medicine and and despite “charged” water and odoriforous herb teas. That experience taught me that a lot of things may help, but there are no guarantees. None, zip, nada. So don’t tell me something “will” work, or is “guaranteed” to work or “cures” cancer. I just cannot take it seriously.

Please also respect that I have common sense, that I know when to come in from the rain, that I know when to take naps, that I have a grasp of what constitutes good nutrition, and that I’ve had a pretty good first-hand education in dealing with the side effects of chemotherapy and other cancer treatments. Send hugs, send love, but don’t send advice. It’s exhausting to be told the same things over and over, and I’m exhausted already as it is.

I especially need to remind folks that “cancer” is not a monolithic disease. There are thousands of different cancers, and thousands of ways to treat it. What works for one kind of cancer may do nothing for another, or even make it worse. And the field changes rapidly. There may be something available to me that was not available to your Aunt Matilda (no disrespect to Aunt Matilda) a couple of years ago. Or a “standard” treatment may now be discredited. That’s why I’m paying the oncologists the big bucks, so they can keep up will all that. My experience with the medical people here has been great, really great. I trust them. You haven’t met them, so please do not give me your opinion of them. What I’d really like you to do is to send them energy, too, so their intuitions and skills stay high.

Which brings me to the issue that is perhaps the most important to me. All you, my readers, (and to an extent my friends and family, too), know about my condition is what is in this blog or my posts or what I tell you. You do not know my complete medical history. And you won’t, obviously. So if you were to give medical advice, you have no way of knowing if it is in the least appropriate for my specific situation. Thus, I ask you to please respect my medical privacy. I will talk about what I feel comfortable talking about, but not about everything. If you ask questions, I may answer them or I may not. They may come from love and concern, or they may come from idle curiosity. Either way, I will feel no obligation to answer. And if I say, “Thanks, but no thanks” to something, it is unlikely that I am going to go into detail as to why. Please understand.

Anyway, telling you all about this is how I chose to celebrate my birthday today. I feel grateful that I have a birthday, and as the days continue, I will feel grateful that I can continue to put one foot in front of the other. Maybe it’s not much, but it’s what I can do.

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The Great Oregon Road Trip Crowdsourcing Experiement

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For the last few months on the social media sites I’ve been hinting around about my impending move. It’s getting close now, maybe four to six weeks before I’m on the road.

I’ve been planning – for years actually, but things like the death of my spouse got in the way – to move to Ashland, Oregon. I lived there for half a year back in 1989, and wished at the time I could have stayed. All these years later it still feels like of all the places I’ve lived the place to which I want to return. Admittedly I expected to get there before what are essentially my retirement years, but there you are. Life happens.

However, I do need to crowdsource some of the move. Crowdsourcing is the social networking Internet way of doing what we used to call rattling the network or pulling in some favors. I like the idea. I have found the world is full of an astounding number of interesting people I never would have stumbled across but for things like blogging, FB and Twitter.

So here’s what I need in a nutshell from you, my wonderful crowd: company on the road and somewhere to stay when I get there.

Here are the details.

The Trip Itself

I’ll be leaving from central North Carolina sometime soon after Saturday, April 21. Can’t leave before then, because I have a workshop to teach that day, but I want to be on the road before mid-May.

I’m gonna load myself and the three “c”s—cat, clothes, and computer—into my old Volvo station wagon. (The rest of my stuff goes into storage to be shipped later.)

I’ll drive from Pittsboro to Chicago. I usually take two days to do that. I’ll then stay a few days in Chicago to visit with my family, and maybe see old friends, too. Depends on the time. From Chicago I head west on I-80 for a long, leisurely drive through much flat land, stopping at scenic wonders and roadside attractions as the impulse occurs. Then I detour to northern California so I can leave Isaac’s ashes in Yosemite, and maybe visit some folks who live in that part of the world. From there I head up I-5 to Ashland, where I intend to stay put for a good, long while.

I’m estimating the whole trip start to finish will last anywhere from two to four weeks, depending upon how long I stay in Chicago, and how many people I visit along the way.

Though I’ve done my share of cross-country driving, I’m not thrilled at going that long and that far alone. My son had hoped to accompany me, but it turns out he can’t get the time off of work until much later in the summer. I can’t travel with a cat in the car in high summer, not to mention I’d rather be out of the South by then myself. And I don’t like driving after dark much, anymore, which seriously shortens my driving day if I’m alone.

Who I’m Looking For

So I am looking for a traveling companion—a substitute son, if you will—with a few weeks to spare who can leave with me from North Carolina, or join me from Chicago onward. This person will have a valid driver’s license, a clean driving record, a bit of a sense of adventure, more than a bit of a sense of humor, and feel perfectly capable of helping me who cope with delays or mechanical difficulties (which will give me serious anxiety attacks).

In exchange, this someone gets a free trip to California and southern Oregon. I’ll pay gas, food, lodging and other reasonable expenses (such as admission to National Parks) plus a plane ticket back to the person’s point of origin. In other words, if you can get to Chicago or NC on your own, I’ll fly you back to your home (from the airport at Medford OR to wherever in the lower 48) as part of the deal. Plus, of course, you get to pick my brains or listen to my stories or put up with my old codger taste in music for a couple of weeks, and maybe meet some interesting people, too.

Interested? E-mail me at phaedra.bonewits (at) gmail (dot) com, or message me on FB. If I don’t know you already, be prepared to provide some references.

What I Need in Oregon

When I get to Ashland, I’ll need somewhere to stay temporarily. I hope to find a room to rent (I like living with other people) or a modest studio. I will have a cat with me, in a crate. If you can put me and the cat up temporarily anywhere in the Ashland area (Talent, Medford, etc.), or know someone who might be able to, contact me at the same email: phaedra.bonewits (at) gmail (dot) com, or message me on FB.

Exactly when I leave will depend on the availability of the traveling companion (wow, sounds Dr. Who-ish, doesn’t it?) and arrangements at the other end, but I really need to get going before the weather gets too warm.

So, my peeps and FB friends and Twitterers and blog followers, let’s take this social experiment to another level, shall we? Oregon, Ho!

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