Remission by any other name….

Did you notice I popped the R word into the last blog post? Perhaps it would have been more accurate for me to write “complete molecular response”. What is this, you ask (or maybe you don’t, but since I think it’s kind of interesting I’m going to tell you anyway)?

As I explain, please understand as I dumb this math down for myself. Math isn’t my strong point. Did I ever tell you my high-school math teacher, after tutoring me for months, suggested I drop the course before the exam to spare me an F on my graduating report card? Thank you, Mr. Fox.

The very smart hematologist who suspected I had CML took a bone-marrow biopsy, both to confirm her diagnosis, to stage the illness, and to get a baseline count of how many mutated cells I had. She determined, from this information, that I was in the chronic phase of the disorder, which is the first of three stages. Forget the F in math; thanks to this doctor, I received an A in CML. Now, every three to six months, I undergo genetic testing of my blood (commonly known as a PCR in CML circles) to determine how many cells with my special Philadelphia chromosome are coursing through my blood.

Within 12 months of treatment, I had attained a 4-log reduction (apologies to any mathematicians if I’ve written this incorrectly) in these cells, which means I had 1/10,000 of the leukemia cells I’d had upon diagnosis. Most CML patients who are diligent about taking their special Philadelphia-busting medications fall within this range or even lower within the first year of treatment. I am nothing if not diligent. I imagine you would be too if a doctor told you that carelessness could result in your leukemia progressing and potentially killing you.

So here’s the $128,000 question (inflation and all): If CML patients are in remission, a.k.a., at the stage of major molecular response, what would happen if we stopped taking the medication we were initially told we’d have to remain on for the rest of our lives? Sounds like an interesting research question, doesn’t it?

Normally I’m first in line to try something new. Hot new restaurant in town? I may not eat there, but I’ll know all about it. Hot new clothing store? I’ll tell you where it is. Hot new park in town? Let’s check it out, Jelly.

How about a hot new study for CML patients who want to rid themselves of the nasty side effects of their medications and are willing to stop taking the drugs altogether just to see what happens? No thanks. I’ll pass.

I’ve been a guinea pig for physicians in training over the last 17 years now. I can’t tell you (and not simply because I’m terrible at math) how many hands have palpated my ginormous spleen. That being said, I’m perfectly happy with my major molecular response, thanks; some other brave CML patients can step up to this plate and ditch their drugs in my stead. Once you docs are sure my leukemia won’t return or even progress to a more dangerous stage without my medication, maybe then I’ll consider going drug free. Good luck finding subjects!

Guinea pig

This is the old me.

 

Ah, ha, ha, ha, stayin’ alive

 

Did you miss National Cancer Survivors Day yesterday? Not to worry, so did I. I scored nary an invite to any of the festivities. I’m not even sure I am a cancer survivor; all I know is that my cancer hasn’t killed me yet.

Turns out I’ve got a good cancer, if there is such a thing, one that people can live with for many years. And since most of the time I’m in complete denial about my co-existing conditions (my impaired liver and my polycythemia–Happy 17th Polycythemaversary, by the way), I can pretend I too will be one of these people who will live a long life.

One of the main reasons I don’t feel like a true survivor is that I still take daily medications to keep my leukemia at bay. Oh, and my regular visits to the Cancer Centre. There’s nothing like hanging out amongst my cancerous peers to remind me I’ve still got the big C.

Unlike many other cancerous folk, I have very few leukemia cells now, according to most recent testing. So few that, in a CML patient booklet I just read, I am considered in remission. No one has used the R word with me before; in fact, when I was first diagnosed, I was told people with CML don’t go into remission. I was as surprised as you may be. If I’ve misled you, I did it unintentionally.

I also learned from that informative booklet that, with the advances in treatment of CML, many of us are living to a ripe old age. The focus of intervention has shifted from treatment to our quality of life. That part I get, now that I have reached Day 7 of The Wrath of the Gouty Finger. The leukemia isn’t so bad; it’s the symptoms and medication side effects that I find challenging.

So I’d like to suggest a new day of celebration more appropriate to those of us with CML. Let’s call it National Cancer-Symptoms Survivors Day. We’d be celebrating maintaining our quality of life while living with the threat of a potentially terminal illness hanging over our heads. We gatherers could compare notes on our various medication side effects and how we have survived them. We could share information about the interventions we’ve added on to manage those side effects.

I can think of many ways such a get together could benefit me. I’m sure there’s a CML survivor out there who would know how to manage yoga postures that require my lying on my belly. “Do you also have to rearrange the position of your football-sized spleen when you lie down?” I’d ask. Or how about our unrelenting fatigue? “Do you too fall asleep during matinees? How do you keep yourself from snoring?” Then there are the challenges of taking all those drugs. “How do you manage to time your medications to minimize all drug and food interactions?” The possibilities are endless!

We’ll plan our special day to coincide with the National Cancer Survivors Day. Then those of us who feel left out will have somewhere to go where we feel a sense of belonging. We all need to feel we belong somewhere.

Cut out figures holding hands

Selective attention in the terminally anxious patient

I don’t go to many doctors’ appointments alone since J. likes to be there for support. She insists on coming along for Dr. Blood and Dr. Liver. It’s a good thing she does because she usually leaves with a completely different impression of the meeting than I do.

Let’s use my last visit with Dr. Blood (it was actually Dr. Bloody Resident) as an example. Every three months, I undergo a special blood test to determine how well my chemotherapy is suppressing my leukemia cell counts. If my counts are low, as they have been for a long time, my chemo is doing its job.

Dr. Bloody Resident decided that, since my leukemia cell counts have been so low for so long, this blood test could be decreased to once every six months. So of course I asked him whether he thinks I’ll get my 5-year pin. (If I survive 5 years of CML, the Leukemia Society will give me a special pin that looks like a little drop of blood with a 5 on it. I want that bloody pin.) Dr. B.R. said: At this rate, you’ll get your 10-year pin (this is the part J. heard), unless your leukemia progresses in some way, which we’d know by blah blah blah. (Anxious Annie started listening after “unless”, somehow blocking out everything else the doctor had said.)

If my leukemia progresses? Why would it progress? Won’t my chemo keep it at bay forever? I’m assuming, based on what Dr. B.R. said, that at some point, the bone marrow will develop a mind of its own, and the CML will progress despite the formerly-effective chemotherapy. No one told me about that part, and I have wisely chosen not to ask.

Maybe someone did actually tell me about this you-have-no-control part, but I promptly and intentionally forgot. My diagnosing hematologist handed me a CML 101 pamphlet when she gave me the news. I glanced through the informative pamphlet while I was still in shock, felt my anxiety rise exponentially, and promptly tucked it away, only to recycle it months later. From my brief perusal of this informative booklet, I learned that CML has three phases: chronic, accelerating, and blast crisis. My CML was caught in the first (chronic) phase, which is a good thing. I can’t tell you anything about the other two phases because I have chosen to put my head in the sand, until Dr. B.R. so rudely yanked my head out.

Maybe I should seek more information on the internet. Nah, forget it. If you’ve followed my blog, you know I don’t consult the internet for answers to health questions because what I find only exacerbates my pre-existing anxiety. As it is, I haven’t been sleeping well the past few weeks.

J. and I debriefed after the appointment, as we always do, even though we both know exactly what the other is thinking. J. summarizes her hopeful take on the meeting and I predict doom.

I spend too much time worrying about what could happen in the future; time to appreciate what is happening now. The sun is shining and Jelly is wagging her tail in her sleep. Life is good.

Basset hound sleeping on back ledge of couch

On the couch? Not our Jelly!

Am I a weak person because I still have cancer?

You knew that all of this blog frivolity would have to end sometime. Serious Annie is back today to talk about the controversial fundraising ad for Toronto’s Hospital for Sick Children.

In the ad, sick kids are presented as warriors overcoming a variety of illnesses, including cancer. Some parents with children with chronic, insurmountable or even terminal illnesses find this message dismissive. I may be an adult, but I too dislike the ad’s insinuation. What about those of us who, however hard we try, can’t conquer our illnesses in a boxing ring?

When I first saw the ad, I had just finished Tig Notaro’s I’m just a person, an autobiographical account written following her recent bout with invasive breast cancer. In her book, she highlighted the absurdity of the courageous cancer battle, as if those people who succumb to cancer are lacking will or determination or have brought their condition on themselves.

Why are people lauded for beating cancer? What about people like me who are living with cancer until we die? Does this reality make us weaker or less courageous than those who overcome their illnesses? Am I not fighting my battle hard enough? And how about those people whose bodies are saddled with chronic or progressive ailments? I can’t imagine Huntington’s disease is a lot of fun. Does someone with Huntington’s deserve his unfortunate outcome? Of course not.

People who learn I have leukemia often ask me if I’m in remission. Every such query reminds me that CML does not go into remission. It’s always there. I’d even call it clingy, and nobody likes clingy. Having cancer until the day I die makes me furious some days and sad others.

I certainly wish I didn’t have cancer anymore, trust me. If I could divorce my illness I would, but it just won’t leave. I should be grateful to be alive, yet I resent my CML, and I shamefully admit I resent people who’ve waged their courageous battle with cancer and won. Then I remember the courageous ones may spend the rest of their lives dealing with the side effects of brutal cancer-killing treatment or worrying about a recurrence, and I feel like a terrible person.

How can I possibly resent the cancer conquerors? I should be happy for them, shouldn’t I? Before I had cancer, I found it easier to be so, but now that I have a forever cancer, I find it harder. Not always, though. Some days I am genuinely happy for you for overcoming your cancer even while I’m sad for myself that I can’t.

Truth is I’m as far from courageous as one gets. I’m anxious and unsettled about my illness and I worry that every new twinge could be a sign of my imminent demise. But, wimp or not, I still don’t appreciate the message in that ad. Similarly, I may think I’m fat some days, but I won’t appreciate it if you call me “fatso”.

If you’ve overcome cancer, I’m not angry at you, but I am jealous that I can’t be in your shoes. Maybe your grass isn’t truly greener but it still looks incredible from here. On the other hand, maybe that’s because you don’t have a dog.

Lawn with dead spot because dog peed on it

How to lose followers and alienate people

The number of readers following my blog has been increasing slowly but steadily since I started writing 2-1/2 years ago. There’s been the odd jump in readership here and there, but mostly I’ve noticed a slow and steady incline. So imagine my dismay when, about a month ago, I lost three followers within one week. I was dumped.

Followers who dump me don’t have to provide a reason for leaving. No note from a parent, no far-fetched fabrication, no “It’s not you, it’s me.” I have to assume my dumpers got bored or annoyed or, possessing a better memory than me, realized I had run out of original ideas eons ago.

But there may have been another reason for the mass departure: my post title included the words “Go Fund Me”. If you recall, I was joking about soliciting funds to pay for a genetic clone of myself in order to lessen my anxiety about dying. Those who did not read past the title may have assumed I was genuinely seeking their hard-earned cash.

With that in mind, I will stress that, yet again, I am not asking you for money in this post. I’d much prefer your emotional support to your hard-earned cash. The leukemia walk is quickly approaching and my team, Annie’s Anemic Leukemics, is numbering 10 now, which thrills me. We will have a guest of honour, a fellow CMLer from out of town who did not want to walk alone, as well as a brain cancer survivor who wants to crash the blood cancer party, in addition to my beloved loyal supporters.

Let me stress that I am not trying to push you to join the team because I understand you may have more important things to do on the evening of October 15. You may be getting your nails done or catching up on your filing or getting a head start on your spring cleaning. I get that. Maybe you’re worried you lack the endurance to complete a 3-kilometer amble. I get that too. (Okay, I’m lying. Haven’t you heard that sitting is the new smoking?)

Or you may not want to participate in an event where little children with bald heads are running around having the time of their lives. I really get that. The sight of kids with cancer always makes me cry, even if those kids are just being kids, but without hair. In that case, skip the walk but sign my petition against kids with cancer. No, there’s no real petition, but I wish it were that easy.

I’m a bit ambivalent about the whole event myself–why do something that I know will make me cry?–but as a card-carrying member of the blood-cancer group, I feel showing up is the least I can do. For one night a year, I hang out with my kind, surrounded by my own amazing community of support. So if you can’t be there, feel free to join us in spirit. You can even sign up for my team for free if you want, so I can add you to my list of virtual supporters.

Consider yourself one of my imaginary friends for the evening. Of course I still have imaginary friends! Don’t you?

 

Picture of girl holding teddy bear with arm out as if around imaginary friend

The mystery of the missing medication

Package in cardboard box with "Urgent" in red on front

Anyone interested in the outcome of my recent postal debacle? The story could have ended so many ways. I could have died because my chemotherapy was lost in a mailroom maelstrom. My writing you today suggests that this did not happen.

Alternatively, I could have been recruited for a study of noncompliant CML patients who stop taking their medication because they don’t feel they need it anymore. I don’t qualify for that study. I’m taking my medication every day until I die, assuming it doesn’t get lost in the mail.

A third but unlikely outcome is the arrival of the package the next day. But that’s too simple. The situation must get worse before it gets better.

On Monday morning, I begged the Cancer Centre pharmacy for a week’s worth of chemotherapy until my missing meds were found. Then I called the post office for a daily update on my untrackable package. Because I am so difficult to please, again I was dissatisfied with the response. I learned that only the sender could instigate an investigation into the missing pills. Furthermore, Ms. Making Me Postal would not contact the pharmacy because she could not make outgoing calls; I would have to ask a pharmacist to call her.

Imagine my surprise that someone at a call centre cannot make outgoing calls! Aren’t most telephones capable of both making and receiving calls? I told Ms. MMP I would not waste the pharmacy’s time. The pharmacists at the Cancer Centre are run off their feet doling out chemotherapy to ailing cancer patients. They haven’t time to spend on hold with an incompetent postal worker. I ended the call frustrated and with no intention of involving the pharmacy in this mess.

If I am unsuccessful at solving a problem despite my best efforts, occasionally J. jumps in on my behalf. You may be unaware that J. can be quite persuasive. In fact, just yesterday a cashier who had never met her before accepted her credit card over her friend’s to pay for lunch because, in her words, “she looks scarier.” So J. called 1-800- Making-Us-Postal again, pretending to be me (yet another benefit of a lesbian relationship,  in addition to the obvious sock sharing).

When J.’s Ms. Making Her Postal repeated the same feedback I’d received, J. asked to speak to a supervisor. Why didn’t I think of that? I was incapable of effective problem solving by then. Remember this the next time you’re too angry to think straight: take a few deep breaths before you jump back in.

J. spoke to the supervisor who, upon learning the contents of the missing package, said she would ensure it was located and delivered promptly. She suggested we’d receive it faster if we retrieved it from the mail depot once it was found, but the irony of picking up something intended for delivery prompted J. to decline politely.

Ms. Supervisor was true to her word. The next day, the package magically appeared at our house, followed by not one but two calls to confirm its delivery. Wait, I thought those posties couldn’t make outgoing calls, they could only lose outgoing mail. Will wonders never cease!

Do you think this effective resolution had anything to do with Ms. Supervisor’s being a recent cancer survivor herself? Nah, neither do I.

 

Sometimes the bad news bearer has good news

I love my work, but, to be honest, being a psychologist is not all butterflies and rainbows. I have had to deal with many challenging people and difficult and emotional situations, Abuse is traumatic for the client and its disclosure can be traumatic for the therapist too. My clients have survived tremendous adversity.

Often, I’ve been the bearer of bad news. Parents can be devastated to find out their child is learning disabled, or has an autism spectrum disorder, or may not become an astrophysicist. For years, I informed parents I believed their children, whom Children’s Services had removed from their care, should not be returned to them. I lost a lot of sleep questioning my own judgement.

Years of this type of work are wearying even for a competent clinician. I don’t often consider the positive side of having cancer, but I can thank my leukemia for potentially preventing occupational burnout. My work doesn’t compare to that of a physician, however. I may have said things that affected the rest of my client’s lives, but I’ve rarely dealt with life-and-death situations.

I can’t imagine informing a patient that she has cancer. That’s what that smart hematologist-on-call told me four years ago. (Happy Cancerversary to me, by the way!) The ER doctor called Dr. Diagnosis for a consultation because of my blood disorder (polycythemia). Dr. D. reviewed my past blood work, spotted some anomalies, and suggested further testing.

I can remember exactly when she told me she thought I had leukemia. After spending a long day in the ER, I was transferred to a hospital bed, so J. had just gone home. I was alone, overwhelmed, and overtired when Dr. D. came in to give me the news. Needless to say, I was beside myself. What did she know? Had she consulted my hematologist, whose care I’d been under for 12 years? Somehow she kept calm in the midst of my meltdown.

J. and I talked with this know-it-all together the following day. J. was as perplexed as I was. We challenged her and confronted her and she stayed calm. In the midst of our uproar, she told us that the diagnosis was a good thing, that she caught the illness early, and that there were wonder drugs that could stop CML in its tracks. That was the good news, and eventually we stopped fighting with her.

By the end of the week, J. and I had realized this doc had probably saved my life. Then, even though we had just met and I had caused her a full week of confrontational grief, Dr. D. facilitated my transfer from my old hematologist, whom I no longer trusted, to Wonder Woman, a.k.a., Dr. Blood.

So I don’t envy these doctors, and I couldn’t do their job. How do they describe their day over dinner? “Saved a patient’s life today, honey.” How do they manage when a patient they’ve cared for and cared about dies? Do they ever fret, or lose sleep, over their decisions? They must. If they need to maintain professional distance to survive the emotional onslaught, so be it.

Thanks docs. I wouldn’t be here today without that level of care, and caring.

Sign saying "Happy Cancerversary"

 

 

One potato, two potato, red potato, pink?

Basket of red potatoes tipped over

Spot the genetically modified potato!

Turns out my cancerversary will be long past by the time I see Dr. Blood and her fantastic team again. I have been given the summer off my patienting job so I can busy myself with other things, like deciding what to bake for my next celebratory Cancer Centre visit.

Barring counselling the odd client (by “odd” I mean “occasional” and not “unusual”), I will have a fair amount of free time this summer. Lukewarm coffee, anyone? I’m available days. As always, I will keep the home fires burning while J. is off earning our keep. Jelly and I will walk ’til we drop, I will keep us in groceries, and I will cook tempting meals and bake delectable wares.

Why just the other day I went to the mega-grocery store, list in hand, only to have an energy vampire sidle up to me at the red potato bin. This well-dressed older woman had nothing better to do than suck all the energy out of unsuspecting shoppers. You know the type, ready to pick a fight over the produce.

As I was choosing my red potatoes, the EV sidled over and said: “Those potatoes don’t look very red.” I nodded and smiled but did not engage her because I feared what might come next. (When anyone tries to engage me in a negative conversation, I put up my magic shield and deflect all incoming messages. Alternatively, say something nice or engaging or interesting and my shield magically vanishes.) Because she had not garnered the outrage she was hoping, she repeated herself: “Those potatoes aren’t very red.” Then she added: “They must be genetically modified.” That’s quite the judgement on those poor potatoes, isn’t it?

If I were an agronomist, perhaps I could have determined whether the potatoes were genetically modified. But, sadly, I’m an ignoramus. EV was implying through her tone of voice that genetically modified potatoes are evil. I don’t know enough about genetically modified food to care. I may nurture my gut bacteria with daily kefir, yet I wonder whether some genetic modifications are not so bad. If you can make my tomato last longer or pack a more nutritious punch, I’m in. That’s why I bought those pink potatoes despite EV’s protests. For all I know, they’re better for me.

After I laughed (just a bit), I said: “I certainly can’t tell by looking at them.” Then I left to check out the genetically ambiguous lettuce. Were I not wearing my ill-fitting socially appropriate hat that day, my inside voice would have said: “Why the heck are you shopping at the cheap mega-grocery if you have disdain for genetically modified produce? The farmer’s market beckons! There you will find God’s bounty. But don’t complain about the ugliness of the produce or the short shelf life.”

Perhaps my strong reaction stemmed from the fact that I too am genetically modified, albeit by God and not by science. Imagine my life without my genetic anomalies, i.e., my Philadelphia chromosome (a.k.a., CML) and my JAK-2 mutation (polycythemia). I’d kill for a scientist to manipulate my genes. Who knows? Maybe it could extend my shelf life.

Will I ever get out of the closet?

Someone with CML found my blog last week using the search query: Am I immunocompromised if I have CML? I wish I knew, but I am not a physician. Never forget this. Do not look to me, a mere layperson, for medical information; talk to your doctor.

I am indeed immunocompromised, but does that mean that everyone with CML is? All I can speak to is my own experience.

This is what I know: I don’t have the ability to fight infection the way a healthy person does. We all have germs hanging out In and around our bodies, but healthy folk have the resources to co-exist peacefully with those germs. I am not a healthy person, so the same germs that you handle easily are potential dangers to me.

If you get a cut, you may heal quickly and easily. If I get a cut, my immune system goes into high alert, trying to fight the infection, but sometimes it comes up short. That’s when I have to get the doctor involved, as I learned last month. My body was strong enough to heal itself that time, but I shouldn’t have waited as long as I did to see the doctor. An infection that spreads through the body is that much harder to fight than one that is localized.

Since my immune system is compromised, I should be careful about what I eat. No raw seafood, since sushi or oysters are a gamble. Although raw milk is all the rage among the earthy types, I won’t be drinking directly from a cow’s udder anytime soon. Also, I’ll skip the Caesar salad when I go out because the dressing is probably made with raw egg. I need my food to be pasteurized, which means it’s treated in such a way that the stuff that’s potentially bad for me is killed, before I ingest it.

But here’s the good news, from what I’ve noticed. Sometimes I’m healthier than other times. I go through long periods with nary an infection, and others where I’m more infection prone.

Which brings us to today. I am writing from a windowless closet in the Emergency Room. Pictures of IV stands and other medical equipment would not do the room justice. How did I get here?

I had a fever Sunday which quickly developed into an infection. Proactive one that I now am, I visited my family physician promptly, but later that day my fever spiked, and the concerned hematologist on call told me to head to the hospital. It’s a good thing I did. I am now on IV antibiotics to slaughter those germs and the doctors have admitted me until they notice significant improvement.

Except hospital inpatient beds are full to overflowing, so I’m still in Emergency. Yes, I am writing you from the ER. It’s pretty quiet in my closet and I’ve been able to sleep, which is not my forte at the hospital. If someone doesn’t find me a room within the next few hours, I may beat my previous ER record of 42 hours awaiting an inpatient room. Trust me, this is not a record I want to beat.

 

Calling all Germinators!

I’ve decided to write a blog post so I can burn enough calories to earn dessert after dinner. I’ll let you know how it goes. If it doesn’t work, maybe next time I’ll go for a walk instead.

I want you to think back to those high school parties. (I was too busy studying to attend, so I’m using my imagination.) There were the friends who came early to help set up, brought food, and stayed late to clean up. Then there were the others who sent out the invitation on Facebook, lazed around with all the party crashers, spilled drinks on the carpet, and moved on to the next house, leaving destruction in their wake.

Picture of 5 female superheroes flyingThis is the difference between your white blood cells and mine. We all need white blood cells to fight infection, and I have 3 or 4 times as many as you healthy folk. With such an abundance of infection fighters, you’d think I’d be healthy as a horse, but in fact I’m immunocompromised. My white cells are the ones who show up at the party with their hoards of friends but don’t do much to help when I need them. I’m calling them Germinators, even though mine don’t really deserve the superhero moniker.

And so we arrive at the events of the past week. It starts with my scratching my finger. Dumb, dumb Annie. It was a superficial scratch since I’m a shallow person, the skin barely broken, but the darned thing wouldn’t heal. Germinators crowded the scene, but they were just hanging out rather than helping clean up.

Within a week, I was in such pain that I called the doctor. Despite what you might think, I don’t call the doctor very often. So when I do call, I really need to get in. Unfortunately, Dr. Family didn’t have time to see me for another two days. Because I am a loyal patient and didn’t want to attend a walk-in clinic–I’d need an hour to provide my medical history–I waited it out.

This, folks, was a mistake. While I was waiting, and my Germinators were lazing around, I developed weird red streaks up my arm. Yes, my Germinators extended the party to my lymph nodes. Lymph node infection can result in bloodstream infection. Last time my bloodstream came to the party, I ended up in the ICU for 13 days.

But not this time. My Germinators finally got off their arses and started cleaning up, the inflammation in my arm settled, and day by day my finger is healing. Unsure whether to keep my doctor’s appointment, I decided to go so for guidance in the event of another life-threatening scratch.

When I arrived at the office, I apologized for wasting Dr. Family’s time. Her response? “OMG (or something like that)! A few more days and…. Next time, get thee to my office forthwith. Oh, and do you realize that every time you visit, you apologize for wasting my time? I just ignore you.” No wonder I adore Dr. Family.

Next time my Germinators bail on me, I’ll go directly to the doctor. I will not pass go and I will not collect $200. Oh, and I will not apologize.