On Gifts, Friendship, and Love

I’m not going to say that it’s been a long time since blogged (although it has been more than two years) but let’s just say I almost couldn’t remember how to log in. For quite some time now I haven’t seemed to have the concentration to write. But one story has been on my mind a lot lately, so I feel I need to share while I can form the thoughts.

It’s sort of a Christmas story, my favorite happy/sad holiday memory from December 2009.

Isaac and I liked holidays. In October, we’d put up a little Halloween tree with wizard and witch ornaments, transition that to Thanksgiving-y harvest decorations & then on to Yule. We both had collections of holiday decorations formed over the decades, and we’d have fun putting up a little tree. He collected Santas, especially those that were more like the Ghost of Christmas Present or vaguely Druidic, green robed Father Christmases, or white-robed wizardly ones. I had holiday dishtowels, Twelve Days of Christmas drinking glasses, and tons of vintage cookie cutters. We took great pleasure in the festiveness, although it was always a little hard on me because I was working retail during most of our years together.

The holiday season in 2009 was different. Isaac had been diagnosed with cancer in early October. By December he was still getting chemo and radiation, both very hard on him. I was taking him to treatments and doctor’s appointments anywhere from once to three times in a day, five days a week. Weeks of radiation treatments were frying him from the inside out. The chemo had miserable side effects, usually at their worst during the middle two weeks of the month. At those times, he couldn’t do much beyond try to get comfy on the sofa, which wasn’t easy because of the radiation burns.

At the same time I was working the holiday season at the mall. I’d done it before, but this was maybe the second year when the mall decided it had to emulate the crazy extended hours that big box stores had adopted. As December progressed, it was required that our store to be open longer and longer, sometimes as crazy as eight in the morning until midnight. You might say, well, lots of stores stay open that long, and you’d be correct. You might say, so what’s the big deal? Well, our small store had a grand total of three employees all year round. The three of us had to cover all the store’s needs over those sixteen hours, while still accommodating days off (no overtime–that would cost the corporation money!). Sometimes, with commuting time figured in, an employee would have less than eight hours between the end of one shift and the start of the next. I know some employees at other stores would just sleep in their cars in the parking lot. Luckily, I lived close enough so I never had to resort to it.

Thus, that December a typical day for me was take Isaac to the radiologist first thing in the morning, get him home, maybe put on a crock pot, go to work, come home, often quite late, and then get up and do it all over again. As the mall began to open earlier and earlier, I’d drop him off at the radiologist’s, and he’d have to take a cab home (he couldn’t sit upright in the car, so his driving anywhere was out of the question). When I had my days off–always weekdays, of course, at that time of the year–I still had to get Isaac to multiple medical appointments. I hardly felt like I had days off at all.

(In addition, either of us had a clue that the whole time I was nursing Isaac through his cancer, I had cancer myself, second or third stage non-Hodgkin’s lymphoma. Two and a half years later, I’d finally be diagnosed when it reached fourth stage. No wonder I was tired!)

By mid December, I was exhausted, mentally and physically. I had no holiday spirit whatsoever. Nothing. Nada. Zilch. I was a bitter, hollow-eyed shell, hating what the so-called festive season was putting me through. One day I came home from work and told Isaac, “The only thing Christmas means to me is that I’ll get a day off.” And I absolutely meant it.

Days later, the Hermes Council, Isaac’s men’s group of some twenty years, was scheduled to meet. (You can read all about the Hermes Council in his book The Pagan Man .) The guys were going to meet at our apartment, small and cramped and chaotic as it was, because he really didn’t have the strength to go anywhere else. Women weren’t allowed at Hermes Council, but that didn’t matter because of course I was working.

When I got off of work the night of the meeting, I hoped I wasn’t getting home too early. The Hermes Council was very special to its members and I didn’t want to disrupt their time together. But I was really to exhausted to head anywhere else. I decided when I got home I would go hide in the bedroom and hope they’d overlook the intrusion.

As I feared, when I first opened the door I saw the Council members were still there. But the second thing I saw made me stop dead in my tracks. A Christmas tree. Lights strung around the room. Garlands on the bookcases and over our computer desks. Isaac’s favorite Father Christmas ornaments and figures on display.

I did the only thing a reasonable, exhausted person could do. I burst into tears. I just stood in the entrance way, crying. Partly from happiness, partly from relief, partly from gratitude.

Our friend Vann came over and gave me a big hug. “I hate all this Christmas stuff,” he told me, “but seeing what it means to you makes it worth it.” So of course, I cried even more.

That night was the brightest spot of a miserable season. I thought I would burst from gratitude. I love those guys to this day, each and every one.

That Christmas of 2009 was the last holiday season Isaac and I had together. He passed the following August. I haven’t really done much fussing for the holidays since then. Partly because after you lose someone, holidays seem off. Partly because in the course of moving, almost all of those treasured holiday decorations got left in New York. (Long story, that.) Mostly I just haven’t had the heart to bother. I helped hang a few ornaments on my friends’ tree in North Carolina, but I felt disassociated from it. Living alone the last couple of years, I really haven’t done anything at all except to put on display the cards I received. It all seemed too much, too ephemeral, too stressful.

This year, I was invited to a tree-trimming party by a local Pagan group in Oregon, where I now live. As I hung an ornament or two on the tree, all the memories of that night, almost to the day five years earlier, came rushing in. I had to leave the room to shed a few tears. But I was able to go back and hang a few more.

Now I’m in the suburbs of Chicago getting ready to celebrate Christmas with my family for the first time in about 15 years. (When you work retail, holiday travel is next to impossible.) Last night I helped my sister and her family decorate a tree with all the ornaments they’ve collected over the decades. I could relax and enjoy it in a way I haven’t done for many years. I’m grateful for that.

I’m also grateful, and always will be, to the Hermes Council for their gift in 2009. Hey, I miss you guys! I want you to know how much that simple act meant to me. I’ll never forget it, or you.

Nope, no bah, humbugs from me. Merry Christmas, if that’s your thing. Happy Yule, Blessed Diwali, Happy Kwanza, Happy Hanukkah, Happy New Year, Happy Whatever Winter Holiday of Your Choice. Bring back the Sun with love and laughter, and do what you can to make someone else’s holiday bright. I think Isaac would agree with that.

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Coming Out of the Cancer Closet

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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