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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8 Responses to Coming Out of the Cancer Closet

  1. catt33 says:

    You are in my thoughts and prayers as are the people on your medical team and in your support network.

    Thank you for sharing so honestly.

  2. dragynphyre says:

    I had treatment for Hodgkin’s Lymphoma 11 years ago, thank the Gods I’m still in remission. I hope the same for you.

    Sharon

  3. rennafire says:

    This witch and cancer survivor thanks you for your wise words. All good energies to you, and to your team of health care people!

  4. druidkirk says:

    Oh, Phaedra, I’m so sorry. Thanks for letting me pray for you. I’ll do my best, for what it’s worth. I’m not all that far away, up here in Washington. Let me know if there’s anything at all I can do for you. You’ve been a good friend, and I want to reciprocate. Love, hugs, and prayers to you! May the Gods give you strength, may your Ancestors give you wisdom, and may the Land herself uphold and surround you.

  5. Kirk, I intend to be well enough to attend Eight Winds Festival next summer! California Druids have already said they would drive me there.

  6. A. Marina Fournier says:

    What you say about unneeded advice about cancer also rings true for insomnia and migraines. Some folk have no idea how old all their suggestions are, and how utterly useless they are to hardcore sufferers.

    Oddly enough, *my* sister is named Carol, but she’s had a stroke, not cancer.

    I am a member of the National Bone Marrow Donor Registry. Your oncologist might at some date suggest investigating this, perhaps they already have. I joined because a local woman had a multiple myelomas cancer, and I had already lost two acquaintances to it. I haven’t been called for more testing or a potential match, unfortunately. Maybe it’s the muttishness of my genetic ancestry!

    You are in my prayers/workings. I wish you the best possible outcome.

  7. Pingback: The Taboo on being sick, and helpful advice | Tchipakkan

  8. PaulPearson says:

    Phaedra,

    Having recently finished my treatment for Hodgkins Lymphoma, I would like to firstly send my hopes for you and secondly offer some positive thoughts. My condition nearly killed me as it led to sepsis and almost destroyed my liver before the doctors were able to diagnose it. The Chemo was pretty good. I did lose my hair but apart from that I had no real ill effects (I think I threw up a total of four times, but that was about it, and probably had more to do with the fact that the steroids I were on gave me a ravenous appetite and I probably ate far too such n those occasions!) and, after a final PET scan after the chemo, I was clear. Yes, it COULD come back, but, Goddess willing, I hope to remain clear. It IS one of the most treatable forms of cancer – in fact, the booklet I was given about the condition was very reassuring. That’s what I’d like to do – reassure you. This is not a death sentence, it is an illness and modern medicine can do wonders (I like to think I’m living proof of that!) and…well, I don’t need to tell you how frightening it can be to live with cancer, but you ARE living and, the Goddess willing, you will continue to do so. I am still weak from my illness – not by the cancer, but by the additional ailments that I had prior to diagnosis. I spent four months in hospital, and due to the liver/sepsis conditions, I wasted away and lost all mobility. However, I prevailed and now I am almost normal – walking can make my feet hurt at times, but I progressed from a skeletal shell to near normality. I am praying that you will be able to say the same.

    Take care, be strong and remember, you’re living with cancer (at the moment) not dying from it.

    Love and blesings,

    Paul x

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