My life as a research subject

Did you notice I barely mentioned last week’s ultrasound? Dr. Blood requested it for Dr. Radi-O’s information when he sees me next week. I barely had to beg the ultrasonographer for the length of my spleen, perhaps because she was the only fully dressed person in the freezing room.

Portion of ruler with imperial and metric measurementsYes, my spleen is shorter, but not by much. At its worst, my spleen was about 23 cms; it’s now down to 20, a reduction of just over an inch for those who need the imperial translation. In other words, it’s still pretty darn big. I can’t tell you if it’s thinner because I don’t know how fat it was to begin with, just how long. Yup, I’m just like a guy, obsessed with the size of one vital organ. But I wish my organ were shorter, not longer.

I was sadly disappointed by this news. When I see Dr. Radi-O next week, I’m wondering whether he’ll view 3 cms as enough of a reduction to warrant another round of radiation. Radiation wasn’t a party, but the Radiators were very nice to me. Maybe I’ll even get to see my favourite, Salima, again.

Negligible shrinkage aside, I know radiation has helped. I didn’t realize how much my spleen was hurting until it wasn’t. I don’t know that I’m ready for tackle football yet, but I am in less pain. And although I still look pregnant, the baby doesn’t feel as big. The only negative is that my spleen isn’t pressing on my stomach as much. Hence my appetite is back with a vengeance.

I don’t know if my opinion matters here–I put my trust in my doctors–but I’d prefer another round of radiation to the alternative. What’s the alternative? A new chemotherapy that Dr. Blood has found quite effective with pregnancy fakers like me. So far I’ve been able to delay this drug trial. I just don’t want to add another medication to my daily regimen of 5 pills and two supplements; I have enough toxicity running through my veins, and my liver, as it is.

I’ve put off taking the drug by telling Dr. Blood that if we change two variables (radiation and chemotherapy) simultaneously in this research study of me, we won’t know what’s working. Will Dr. Blood will continue to accept my research-design argument when I next see her? That may depend on what Dr. Radi-O decides: if he nixes another round of radiation, I imagine I’ll be Dr. Blood’s research subject again. Truth is, maybe I’ll tolerate the new medication easily, maybe it’ll help more than radiation has, maybe I won’t experience any side effects, but I won’t know these things until I try it. I just don’t want to try it if I don’t have to.

I’d prefer radiation to a little pill once a day? This logic may seem crazy to you; it probably is crazy. But you’re talking to someone who rarely took Tylenol before my body went to pot. The first round of radiation wasn’t so bad, and it seems to have helped me. And if I don’t return for more zapping, I’ll never know if Salima still loves me. So many unanswered questions, so little time.

My beef with bread

It’s been a low key week as I recover from our travels, and our travails. Because I had no one to cover me during my week of not being sick–with the drop in the price of oil, there are cutbacks all over Alberta these days–I had some work to make up, including a few trips to the lab, an ultrasound, and a visit to Dr. Family, which resulted a referral to yet another specialist. Thank goodness I’m highly qualified for my full-time unpaid position as a patient.

I had kept much of today clear so I could take it easy, though. Despite my vacation hangover (not all hangovers are alcohol induced), I decided to take a short drive to the grocery store in search of a loaf of bread. Now I’m really tuckered out. I picked up package after package, scrutinizing each nutrition label closely, before I decided on one that was passable.

What’s the big deal, you ask? There are endless varieties of bread at the grocery store, so buy one, Annie. Well, because of this low-sodium diet I’m on, the one that keeps me from looking even more pregnant than I already do, buying bread is not that simple. If you don’t believe me, take a minute or two to glance at the sodium counts in the bread aisle. The store-baked whole wheat bread that I passed on was a mere 440 mg for two slices. Then wander over to the cereal aisle, or, if you really want a heart attack, to the soup aisle or the prepared frozen food aisle. If you’re as weary as I am after all this label checking, leave the grocery store and hit up a fast food joint for lunch. Now imagine the counts you see fitting into my allotted 1000 mg per day of sodium.

I used to buy a low-sodium loaf at a local grocery store but they recently stopped baking it altogether so I’m back on the hunt again. Maybe they nixed the lo-so option because I was the only one buying it. I know the research of late has been contradictory, but am I the only one worried about consuming too much salt? Maybe if one or two of you were worried too, we could start a petition to bring back my bread. So far, my pleading has not helped.

I know, I should just be baking my own low-sodium bread. I used to more often in the past but I’ve been remiss lately because baking bread takes effort and time. I could probably find the time between medical appointments, but all my patient-job duties don’t leave me with a lot of energy.

A wearying outing like today’s almost makes me wish I were a good Jew who observed Passover (which is on the horizon by the way), because matzah is very low in sodium. Unfortunately, matzah also looks and tastes like cardboard and, as I’ve told you before, it must be consumed with a chaser of laxatives. The Jews may have survived 40 days in the desert, but 8 days of matzah would kill me. I feel I’ve been punished enough as it is.

Matzah cut in shape of Star of David

My business (non)sense

It’s time to renew my professional license. In order to be able to call myself a psychologist, I have to be trained and competent to continue to work in the field. These things I believe I am, although you may disagree about the “competent” part. I also have to pay my dues, which have risen to $725 this year. This is a cost of doing business.

I’ve paid my dues willingly since I was diagnosed with leukemia in 2012, so that if I felt I could work, I’d be maintaining the proper accreditation. Looking back on it, I don’t regret that decision. I wasn’t always able or competent, however, resulting in my suspending my work in 2012.

Sick or not, I love my work and I feel so lucky to be able to do what I do. I was never good at marketing myself, but I had developed enough relationships with other psychologists, physicians, and clients that, after many years, I didn’t worry about where the next new referral would come from.

Things are different now. The only clients who call are those who don’t know I’ve got cancer, or those that have been referred by people who don’t know. More often calls are from people wanting my money. Each year the Yellow Pages gal encourages me to add something new to my account. Maybe it’s time to tell her (it’s a different “her” each year, mind you) that I have leukemia and she’s lucky to get any money from me at all. For the past few years, I’ve been spending more money than I’ve been making to be able to see the few clients who call.

Also, my disability pension limits my annual professional earnings to $5200. If I make any more than that, the government will reduce or eliminate my pension. I understand that. If I’m able to work, why would the government consider me disabled? But there are times when I can’t work at all, and those times are highly unpredictable, so I don’t want to give up my pension, which is my only stable source of income.

When I was hospitalized last December, for the first time I questioned whether I should give up my license altogether. But the wise people I consulted with at the time told me that a crisis is not the time to make such a decision. It’s like selling the house or moving to a new city too soon after a spouse dies rather than taking the time to deal with the grief and figure out what would be best in the long run.

Using this same logic, I have decided to pay my dues this year, knowing that I will be operating my business at a loss yet again. This way I will be able to continue to see clients who call. Working makes me happy, and I’m not ready to give up calling myself a psychologist. So the little shingle stays up for now. But if you’re seeking business advice, I can’t help you. I can, however, give you the name of a good accountant. He’s got some time because he’s given up on me.

Psychology insignia with quote:"Keep calm I'm a clinical psychologist."

Why did I pack my ruby slippers?

Bottom half of Dorothy wearing ruby slippers with magic wand

There’s no place like home.

I’m having a good hair day, but I look like I have leukemia because of a stressful return voyage. But first the vacation in a nutshell: it was heaven. J. and I delighted in the beautiful oceanfront setting, the sea lions, the sun, and the fish tacos. But we were both missing home by the time of Sunday’s departure.

Our trip there may have been a comedy of our errors, but the trip home was a comedy of the airline’s. Because there are no direct flights, we connected through Denver with a one-hour layover. We knew we were in trouble when our first flight was delayed. Divine intervention could not have gotten us to our second flight; we could only hope the connector would depart late.

Did you know that the Denver airport is 1-1/2 miles long? Our first flight was arriving at one end, and our connector leaving from the other. Moving walkways aside, my cancerous body wasn’t up to running 1-1/2 miles. But able-bodied Judy’s was. She arrived at the gate to find that our second flight had just departed. With no outbound flights to Calgary, we’d be sleeping in Denver.

Ironically, our customer services assistant at the United desk had recently left a position at a cancer centre to deal with grumpy people who’d missed their flights. How could working at a cancer centre be more stressful than dealing with the angry masses all day? From this woman, we learned that all flights to Canada had been oversold for days. She suggested itineraries with connecting flights in various cities that were farther from our final destination and had lengthy layovers. Eventually she issued us boarding passes for an oversold direct flight the following morning, telling us we’d have a 50/50 chance of getting on. She also suggested we leave our luggage at the airport, where it would be redirected. (Yes, this is foreshadowing.)

I can’t tell you whether Denver is a nice city. We rode for 1/2 an hour down a dark freeway, where we were put up in a hotel with other disgruntled travellers. We dragged ourselves back onto that shuttle at 5:30 the next morning so we’d be first in line at our gate. When the agent arrived, we were informed that we would indeed have seats on the flight because we had boarding passes. Big sigh of relief. We didn’t realize until later that this agent also threw out our baggage claim stickers. (More foreshadowing.)

And so we arrived in Calgary a day late, exhausted from stress and sleeplessness but no worse for wear, only to learn that our bags had asserted their independence and flown to Chicago. I guess they weren’t ready for the vacation to end. But we are now home, and guess what just showed up? Our adventure-seeking bags that we couldn’t prove were ours. But the nice woman gave them to us anyhow.

I have failed this latest test on letting go of the things I can’t control. I was utterly panicked by this turn of events, and my exhaustion amplified my stress. I was especially overwhelmed by the possibility that I would run out of my medication, chemotherapy included, since I had only one extra day’s dosing with me. I never miss a dose.

We had a great trip but I’m glad to be home. We’d had a busy week by my standards, and I wasn’t up for this last adventure. Next time, direct flights only. Oh, and we won’t forget our passports.

Adios red card

Author in a wicker chair on a patio looking out into the oceanA diagnosis of cancer in Alberta comes with a free gift: a red card. I need to show this card for identification at all Cancer Centre appointments. You know, in case anyone tries to steal my chemo or take my radiation. I keep my red card in my wallet at all times because I need it at the ready, but I wish I didn’t have to. Red is the colour of danger and sirens and alarms and other bad stuff. I don’t hate a lot of things but I hate my red card, and I’ll never be able to cut it into little pieces like my expired credit card because I’ll always have leukemia.

So I was glad to hear that the red card is going to be replaced by a white card.  White is bland and boring and not red, which seems an improvement. Not only that, each white cards will have a message of hope on the back. Jessica Dollard, that magnificent Patient Experience Advisor for the Calgary Cancer Project, invited patient advisors like me to provide such a message.

Author seated in La Jolla library looking for quotes

Seeking a quote at the library.

I found this task challenging. I tried to write something from my heart, but because I am shallow, I thought Rita Mae Brown said it better (with thanks to my dear friend W.): “Happiness is pretty simple: someone to love, something to do, something to look forward to.” I often come back to this quote when I’m feeling blue.

I’m lucky to have the first two directives down. I am blessed to have J. and many other loving people around me who support me. And I can usually come up with something to do, whether it’s walking the dog, going to yoga, cooking a nice meal, or writing my blog. I don’t do nearly as much as you do in a day, or nearly as much as I used to do, but I do what I can.

Sometimes I forget the importance of having something to look forward to, but I thought of this goal a lot on our trip. J. and I have a longstanding vacation tradition: we plan for our next trip on our current trip. I’ve been having trouble getting J. to buy into this notion over the past while, amidst all our cancelled and pared-down trips. Who am I kidding? I’ve been having trouble with the whole trip-planning thing too. When our hopes are dashed repeatedly, we lose focus on the future.

But this trip has felt different than those recent thwarted attempts at travel. We’ve had a successful week away (with a few health blips that are inconsequential and not worth going into now), and our trip planning tradition magically resurfaced. Maybe I’m over the hump, maybe we’ve got some time, maybe we’ll be able to follow through with our plans for the next while at least. I won’t tell you what we came up with–I’m becoming a little superstitious of late, and don’t want to jinx our dreams–but I will tell you we have tentative ideas for our next two vacations, to places we’ve wanted to go but put off because I haven’t been able.

What have you got to look forward to? I’d recommend you find something if you’ve lost focus. I’m happy to have some future aspirations, just as Rita told me I’d be.

Waves crashing against shore at La Jolla

I’ve just turned 5000!

Maybe you’d like to hear more about our trip. You’re imagining the various disasters that have befallen us since I last wrote. But since we traded in our pukemobile, we can actually smell the ocean air while we drive. I’ve scored a few more of those great chili-hazelnut chocolate bars. Rocky start aside, this vacation is turning into one of our best ever. But I find it cruel when people brag about vacations to those who are not on one, so I’ll leave it at that.

Rather, I will tell you, with some pride, that there’s been a hubbub of activity on my blog lately. I have a few new keen followers who are catching up on old posts, and many lovely, supportive, and funny comments. These kinds of things are exciting for a blogger. In fact, I’ve just passed the 5000th view of my blog.

Just so you know, followers, however loyal you are, you don’t count toward my site views if you read the posts I email to you. Only people who go to my blog site count toward my stats. This is good for both of us, because then if you dump the emails I send you without reading them, I’ll never know and I won’t cry.

I can gather considerable information from my blog statistics page, including which country my readers are from-I had a Ghanian reader the other day!–how many people have viewed the blog, how many posts have been viewed, and the searches conducted to find the blog. And, often, but not always, the terms or phrases used in the search, if they are in English. I also get a daily listing of the specific blog posts that have read. But don’t worry, I can’t connect any of these stats to individual people and, unless you comment on a particular post, I do not know who’s been visiting.

What I have noticed, to my horror, is the number of times my homosexual hosiery posts, especially the one with “homosexual hosiery” in the title, have been found through an internet search. You know what I’m referring to here; I just don’t want to repeat the exact term or I will draw more potential foot fetishists to my blog. And I don’t want that.

My intention has always been to keep my blog G- rather than R-rated, but it’s true, I have raised some pretty racy topics over the year. Male genitalia, dirty (no not kinky, just not clean) homosexual hosiery, why even all the references to my sinful rampant happiness. (You do know what it means to be gay, don’t you? And, yes, I was born happy.) That’s why I don’t swear in my blog, as my dear new reader L. recently noted, even though I can be mighty cheeky in real life.

I have also learned that if I check off “Writing” as a post category, which I plan to do today, several bloggers who believe they are better writers than me will offer to help me improve my writing, for a fee. Hey, I wonder what would happen if I added “Humour” as a post category. Would a whole new group of bloggers offer to make me wittier? I’m not naive; I know they too would want me to pay. But could anyone really make me funnier? I think I’m hilarious already, although I never quite know if people are laughing with me or laughing at me. And, no, I don’t want to know.

A and J’s Excellent Adventure

Picture of palm trees in la jolla

The view from our lovely deck

You know how much we’ve been looking forward to this trip, right? How we’ve longed to get away but couldn’t get the doctors’ okay? How much J. needed a vacation from work, and I a vacation from leukemia? Well, we were all booked and ready to go. I don’t think J. believed we’d actually get on the plane–she was convinced something would interfere at the 11th hour–but Sunday came and we went to check in to our flight on line.

Because we were flying to the U.S., J. went to get our passports, only to discover that they had expired three months ago. Three years, three months, three days, frankly it wouldn’t have mattered, we just knew we would not get in to the States. Why hadn’t we checked earlier? Well, remember, we hadn’t been travelling much, and, to be honest, our passports were the last thing on our minds.

Our calm preparation for our trip quickly turned frantic, but there was only so much we could do because it was Sunday. So we did the parts we could: we printed off and completed passport applications, we ran out to get passport pictures, we researched where and when we’d have to go in the morning to beg and plead for a new passport, we lined up our very dear friend and dog sitter, Triple D, and her partner, R., to help with transportation and dog walking, and, optimistically, we packed. Oh, and I was grumpy on the phone with every single person who called. Sorry friends. I was a little overwhelmed, not that that’s any excuse.

We were first in line at the passport office and, thanks to Chad and Loomi’s standing on their heads, left with new documentation in 71 minutes and sped to the airport. Thank goodness Chad and Loomi didn’t uphold our motto that poor planning on our part does not constitute an emergency on theirs.

Yes, there were several other inconsequential challenges that day–a blackout in another wing of the airport, 9 missing bags that kept us on the tarmac for one hour, a crying baby behind us, but, by the grace of God and good friends, we made it to our destination on time. Sure, someone must have vomited in our rental car–you know it wasn’t me–but that inconvenience is easily solved today.

As I write, I am sitting facing the ocean, the sun is slowly rising. and I can hear the waves and the seagulls. J.’s carefully chosen hotel is as beautiful in reality as it is on line. And because we had both, without knowing, told the hotel about the nature of our trip–we were celebrating good health despite leukemia–we were generously upgraded to a full ocean view room. The kitchen is fully appointed with fancy appliances, including the gas stove I’ve always coveted but J. has denied me because she asserts I would light myself on fire. She’s probably right.

As if that weren’t enough, there was cold water awaiting us, and two perfect little chocolate bars on the bed. Hazelnut chili milk chocolate. Chili is always paired with dark chocolate, but all that hype about the antioxidants in dark chocolate has been disproven so I now indulge in milk chocolate without shame. Could this trip get any better?

Now, before you go chastising us for being such idiots, check your passport expiry dates. Emergency passports cost a pretty penny. Our vacation budget was at a surplus because of all those cancelled trips, but yours may not be. On parting, Passport Chad kindly reassured me that people don’t often make this same mistake twice.

Picture of courtyard at Pantai Inn

Life is really, really, really good right now.

 

Marriage for all?

I know that homophobia exists in many cultures and even within our own. In this day and age, can you believe that people are ostracized, beaten, jailed, or even killed for being gay? It’s not a choice, people, trust me. I chose heterosexuality for many years, and it ultimately rejected me.

With these rampant prejudices in mind, I consider myself a lucky gay person. I have had to deal with very little negativity for being gay. When I was younger, I was more often confronted with homophobia, and maybe that’s why I waited until I was in my 30s to choose gayhood.

J. and I are very matter of fact with people about our sinful relationship. Does that make it easier for people to accept us? I don’t know because I don’t have anything to compare our experience to. There have been unusual moments, like the time a hospital worker asked my very gay male friend if he was my husband, even though my very devoted female partner was the one visiting me for hours every day.

Unspoken homophobia reared its ugly head when, after years of begging, J. finally agreed to marry me, and I was tasked with finding a marriage commissioner. I was upfront about the “two girls” part in my initial contacts with commissioners, and did not even hear back from the majority I contacted, even though all Alberta commissioners are required to marry couples of different religions, sexual or gender identities, or even heights. Yes, commissioners must marry tall women and short men, whether they want to or not. One commissioner told me she had married one other gay couple–gay marriage had been legal in Canada for 8 years by that time–but her voice betrayed her discomfort. Would I want a person like that sealing our deal?

We did finally find someone who was more than willing to join us in holy matrimony, but not without a lot of searching. And boy was I glad we had married when I became very ill and landed in hospital a few months after our wedding. Marriage ensures that J. is the doctors’ primary contact and the one who can make decisions on my behalf. And she needed to be my voice on many occasions during my prolonged stays.

Our difficulty finding a commissioner prompted J. to take the bull by the horns. She put her name forward for the job and, lo and behold, she was recently granted the authority to wed people. First, she had to ace a gruelling interview that included her performing a mock ceremony. A plant stood in as one member of the couple and a lamp as the other.

Yes, J. can now marry you, if you need marrying, that is. I may be biased but I think she’s the perfect person for the job. She won’t have any trouble marrying tall people to short people, black people to white people, or even girls to boys. She is funny, confident, and well spoken, and can put anyone at ease.

As she sets up her business, her talented friend, P., is creating the website to end all websites, and she’s including pictures of P.’s own bi-racial wedding. J. has set her new cellphone ringer to–what else?–Mendelssohn’s wedding march. Her branding is almost complete. She is holding off on the personalized licence plate for now, though. What do you think of I DO I DOS? Our friend, W., came up with that. Nice ring to it, don’t you think?

Ernie and Bert wedding cake toppers

We always knew they were gay.

Ode to a needy friend

I went for a walk with my dear but needy–her descriptor, not mine–friend, L., the other day and, as our visit was nearing the end, she whined (which is uncharacteristic of her I might add): “Why have I never been the focus of a post?” She caught me off guard because: a) I’ve never seen L. as needy; and b) our discussion that day did not lend itself well to a post.

I should mention that L. and I are very good friends. We have known each other since I arrived in this fair city and, although our contact has waxed and waned over the years, we have maintained a special friendship, or at least I think we have. L. has supported me through thick and thin, and I have tried to do the same for her. We talk openly and frankly, as many psychologist-friends do with one another.

On this particular day, L. and I had a lovely visit. Since she knows what’s up with me from my blog, when we get together, I try to catch up on her life. Sometimes she allows this. In fact, on this occasion, L. moved into full disclosure mode. When she was finished sharing, she said: “You are not to tell any of this to anyone.”

You may be surprised to hear that despite my disinhibited nature, I am capable of maintaining confidentiality. They drill that stuff into us in graduate school, as you might imagine. I may be terrible at keeping my own secrets–J. still doesn’t know what I’m getting her for her birthday, by the way–but I’m very good at keeping those of others. Yes, I can zip my lips if I’m instructed to. L. may not be my client but the same rules apply.

And so when L. asked me why she had not been the focus of a post, I reminded her that moments earlier she had insisted that our discussion remain private. Were I to blog about what she had told me, I would not be respecting her privacy, would I? Wouldn’t you agree that she shot herself in the foot on this one?

And then I reminded L. that a long-ago talk we had indeed led to a post on discussing my cancer with people. A very astute question she had asked me got me thinking. So she had in fact inspired one of my posts; she had just forgotten. Initially, I was deeply wounded that L. had not committed my every post to memory…but then I got over it.

I will most certainly be listening carefully during my next conversation with L. for blog-appropriate material. But I will remind L. that if we are going to have our usual mutual therapy session, I may not feel comfortable sharing the material on line. I only disclose too much about myself, not others, in my blog. Maybe L. should write her own blog so she can share unreservedly about herself with the world.

And I say the same to you, my dear readership: If you have been clamouring for my attention and I have not been listening (be sure to clamour in my left ear since I’m mildly hearing impaired in my right), if you too have been pining for a post, let me know. I’ll see what I can do. But first you’re going to have to give me something to work with.

Man telling woman a secret, woman's mouth wide open in surprise

And you expect me to keep that a secret?

Why not me?

I just heard that, at the 11th hour, someone claimed a $50 million lottery prize. Bummer. I was hoping the ticket might be mine. But then I remembered I have to pay to play. Winning the lottery would be nice, though, wouldn’t it? I’d like to think we’ve earned a lucky break.

I’m thinking about money lately because: a) it’s tax season and yet again I am confronted with how little I’ve made this past year; and b) J. envisioned retiring someday soon until leukemia messed with our Freedom 55 plan. Was Freedom 55 realistic for us before my income tanked? We wouldn’t have been retiring rich, but we believed we could sustain our modest lifestyle with our savings. Now we are trying to live on J.’s salary without dipping into these savings. God bless my sugar mommy.

But here’s the tricky part: how do we figure out how much we need for retirement when I don’t know when I’m going to die? If I knew my death were imminent, the decision would be easy: J. could quit work tomorrow. But life, and death, aren’t that simple.

J. took off the year following my illness to care for me, but also because she didn’t know how long I’d be around. When I no longer needed someone there to chauffeur me to appointments or make sure I didn’t slip in the shower, J. practiced being retired. She’d be a great retiree. No transitional pining for work for her. Surprisingly, the two of us adjusted fairly easily to being in each other’s space, and we negotiated our own space as needed. After the fears of dying were out of the way, we had a great year.

I’m not planning on dying anytime soon–no way we’re cancelling next week’s vacation–but it would sure help us plan for the future if I knew how long I had. What if J. retires and I stick around for a while longer? Will we run out of cash? Will I leave J. destitute, forcing her to return to work in her 80s? I’m causing her enough stress while I’m here.

We were discussing this issue with our much younger dear friends, J. and M., on the weekend. They wisely reminded us that no one knows when death will strike. People die suddenly, and unexpectedly, all the time for various reasons. Chances are if J. retires sometime in the near future, we’ll be just fine, whenever I die.

One hand holding piles of coins that increase over time, with "Frugality" following the curveSome days I regret our focussing so heavily on saving for retirement when we could have been using some of that money to enjoy today. We didn’t deprive ourselves, but we might have set different priorities had we known cancer was looming. That’s why, in addition to next week’s ocean-view hotel room, we’re going to splurge on the Early Morning Experience with the Pandas at the zoo, and we’ll hear Pinchas Zukerman both playing with and conducting the local orchestra the night before we leave.

Despite these indulgences, I trust J. will still have enough money to put food on the table at 93. If not, maybe you’d consider inviting her for dinner on occasion? Thanks.