Running, or walking, or crawling on empty

Car with hood open getting tune up, hands visible working on car

I didn’t manage to publish a post last Friday, despite my best intentions. I was caught up at the doctor’s office for longer than I had expected. No, nothing was wrong, I had been recalled for regularly scheduled maintenance with Dr. Family. Even we sick people need to ensure we’re not going to get a flat tire on long, hot summer drives.

More often than not, when I go to see my master mechanic, I am seen by one of the many apprentices training under her expert wing. This time, my apprentice was a week from graduating with her ticket, so she handled my tune up with the expertise of a seasoned professional. Still, any apprentice takes longer to get the job done, and has to run everything by the boss before the car is allowed back on the road.

After a thorough review of my hefty file, Dr. Apprentice completed the routine checks from top to bottom. She ensured all my fluids were filled to appropriate levels, that my spark plugs were firing and my motor was functioning, and that my tire pressure was adequate. Then she inspected me all over for any unusual dents or markings.

Before we were done, we discussed the issue of my gas tank, which seems to have shrunk, along with the rest of my body, in recent weeks. If this lower gas consumption continues much longer, I’ll be reclassified from sedan to compact for the first time in years. I confessed I’d been having trouble filling’er up past the half-way mark, which is highly unusual for this Little Miss Piggy. Dr. Apprentice looked at my current weight, which had eked its way into the healthy range, and showed little concern. I imagine I’d have garnered more reaction from her had I stopped filling my tank altogether, or if I’d confessed that parts (or is that “pants”) had started falling off while driving, but since I still seemed to be running fine on half a tank, she barely raised her eyebrows.

I was sent off with the usual blood and body work, and told that the office would contact me with any recall notices. Sounds good to me.

Stalled car with hood up by side of roadThen the weekend came and, for the first time since this lowered gas consumption started, I tanked. I could barely turn over my engine. I virtually stalled by the side of the road. That’s when J. decided to start the force feeding.

In case you were wondering, I haven’t voluntarily adopted a calorie-restriction diet in order to live longer. You’ve heard of those, haven’t you? Crazy people are actually choosing to go hungry in order to extend their lives. Doesn’t sound like much fun to me. I am not them, I can assure you.

This Friday, I will be seeing Dr. Joint, or Dr. Goutfire, or Dr. Uri–so many options, so little time to decide!–and we will discuss the gout-busting pills that seem to be making it hard for me to fill my tank. Hopefully Dr. No Name Yet will support a medication adjustment so I can resume eating again, assuming my gas tank has not shrunk permanently. That leaves me four more days to fit into those favourite jeans….

Lest she forget

Where oh where has my appetite gone? Who cares? I’m on the easiest diet ever, one that doesn’t involve any planning or effort. Let me revel in it while I can. Don’t be jealous; losing an interest in food isn’t much fun. I don’t recommend it. I’m headed out for lunch today with friends and wondering what I’ll not eat.

Today I can assure you that my appetite loss is not a sign that my health is in peril. Yesterday Dr. Blood confirmed that my blood test results were a-okay. I’m fine.

Enough about that; we had many other more important things than my health to discuss. Dr. Blood is leaving for her overseas adventure at the end of July, so this was my last appointment with her, for now.

I’m going to miss her. We discussed the young hematologist assuming her practice in her absence–I’ll need yet another new name, folks–whom she’s no doubt chosen very carefully. Dr. Blood would not leave her patients with someone she did not trust. She assured us that she’d be back, and I believe her. She told us she rented out her home here for a year; she didn’t sell it. That’s a good sign, isn’t it?

I promised myself I wouldn’t cry and I didn’t, or at least not once I’d arrived at the Cancer Centre. (The drive there is another story.) J. and I asked Dr. Blood about her plans because we’re genuinely interested and we wished her well because that was the appropriate thing to do. I did not plead with her to stay, not even for a nanosecond.

Then I gave her the thank you card I should have written years ago telling her how grateful I’ve been for her diligent care. I reminded her of when we first met and how she saved my life. It’s a great story, and one she should never forget.

I’m an awkward hugger at best, but I was planning to ask if I might hug her at the end of the appointment. She preempted my awkwardness altogether. As we were parting, she asked if she could give me a hug. It was a significant gesture from someone who has been such an important part of my life for the past five years.

Changing of the guards

Just imagine these are doctors.

I am genuinely excited for her, and I hope she has a wonderful year. At the same time, I feel sad that she will not be here to care for me. Am I a bad person for thinking of myself and my needs in this situation? No, I don’t think so. Still, I’m glad I refrained from bringing Sadness into the room. I will miss Dr. Blood, but I will welcome her replacement and put my trust in him. I’ll adapt to someone new because I’ve been through the changing-of-the-doctors drill many times now.

Dr. Blood has also left me with a new goal to strive for. (We cancerous folks like setting goals for our futures.) The new goal? I now have to stay alive until she gets back. Dr. Blood seems convinced that I will still be here, and since her judgement has been 100% thus far, why start doubting her now?

Introducing the incredible shrinking woman!

Shot from the movie The incredible shrinking woman, tiny actress on big armchair

Thanks to all of my witty and creative readers who forwarded inspired names for my new doctor-to-be. (Take a look at last post’s comments if you haven’t already. I guarantee you will laugh out loud.) I may call a vote to decide the winner. Don’t worry, contributors, you’ll be able to vote anonymously for your own brilliant submission.

Today we have something even more remarkable to discuss, if that is possible, since I try to intrigue and delight with every post.

My weight has always been the bane of my existence. I insist I’m large boned, but that excuse will only go so far. I have likened myself to a pufferfish, and have spoken of my 75th trimester pregnancy (“trimester” may not be the appropriate word here). I generally watch my weight, but do not do anything about it, i.e., I am not a dieter. I may try to modify my eating if I fall off my Great Sugar Revolution wagon, for example, but I do not deprive myself of anything. Deprivation leads to bingeing, folks, remember?

For the past few years, my weight has been largely unchanged. I am overweight, but not excessively so.

But no more. My appetite has been MIA for two weeks now. I ate very little breakfast this morning, and now, at 1:20 p.m., I must have missed the lunch bell. I’m making myself consume small portions to keep myself going–I’d hate for my large bones to start protruding–but I have not experienced a hunger pang in some time. This is odd. My large pants are loose, and I even look a little less pregnant (which can happen if you’re not pregnant). I have re-entered the healthy-weight range for the first time in two years.

Normally I love food and I love eating, so why are the pounds are falling off me? I am not intentionally restricting my intake. I can assure you I don’t have an eating disorder. I’d eat if I felt like it. I don’t feel like it.

Of course this change of events could mean that my health is amiss, but there’s no sign of that. I feel absolutely fine, although I’m not sure how I’m functioning on so little food. Rather, I’m wondering if my latest combination of medications is to blame.

Many of my medications list loss of appetite as a possible side effect, but I never have the pleasure of experiencing that. I gravitate toward the tired side effect instead. Whatever combination of pharmaceuticals I’m consuming, I’m always famished. In fact, when I was speaking to Dr. Family the other day about my many medications, I told her I was hoping for the possible nausea from one, since I’d like to lose a few lbs. She looked at me quizzically, and then, despite herself, she laughed.

Perhaps the answer to this mystery is in my blood work, which Dr. Blood will review with me tomorrow. Whatever the reason for my incredible vanishing appetite, I’m hoping to extend my disinterest in food for a few more weeks. By then I should fit into my favourite jeans again.

 

What’s in a name? Everything to me.

I lied. I promised you the gout saga was over, and largely it is for you, dear readers, but for me it has only just begun. This last episode was my greatest ever. After years of practice, I have finally attained a an A in Advanced Gout. How about that?

My dear Dr. Family is part of a conglomerate of physicians and health professionals in the city known as a primary health network. Her participation in this network facilitates her access, on an as-needed basis, to a variety of specialists for consultation. Last Friday when I stumped her–gifted patients do that to their docs sometimes–Dr. Family contacted the health-network rheumatologist for guidance. From this specialist, Dr. Family gained useful information on gout management. The specialist also noted that, if I felt it would be helpful, she would gladly meet with me directly at some point. Good to know. Now that I have achieved the pinnacle of goutiness, I have become a coveted patient to any self-respecting rheumatologist. No wonder specialists fight over me.

A few days after this consult, the rheumatologist called me to set an appointment. Somehow my stellar achievement in Advanced Gout warranted me an urgent referral. Wow. I felt like I’d just won a 4-year all-expenses-paid scholarship to Oxford. When I called to book in, I was offered my pick of possible appointment times within the next two weeks. I have done so well in gout that I have been awarded the most valuable scholarship ever: immediate access to a specialist.

There’s a reason I’m telling you all of this, beyond my wanting to revel in my rheumatological prowess: I can’t think of a good name for this doctor. I’m stumped.

Basset hound with head cocked, quote: "What's in a name?"If you’ve followed my blog for any length of time, you’ll know that I take great pride in naming the characters in my stories. Forgive the anything-but-humble brag, but I am proud of my name creativity. There’s Dr. Blood and her entourage of Bloody Residents, Dr. Liver, who evolved into Dr. Fois Gras, and Dr. Heartless, the only doc I’ve ever had who failed me. You may recall Dr. Skeeter, the infectious disease specialist, Dr. Woman, (woman parts), and Dr. Knife (figure it out). Remember Dr. Skin, the kind dermatologist who had, to quote my funny self here, “chosen to spend his adult life examining people’s zits”? Even Jelly has Dr. Animal. Then there are the other non-medical folks: Ms. Making Me Postal at the post office, Ms. Druggie (the pharmacist), and Little Mr. Sunshine, the generous platelet donor, to name a few.

Enter Dr. Rheumy (that’s lame), and I’m stumped. “Dr. Ouch” would suggest she’s hurting me when in fact she’s trying to relieve me of my pain, and “Dr. Gout” would suggest an unduly narrow scope of practice. I have two weeks until my initial appointment to arrive at an appropriate moniker. (Yes, you too can see a specialist remarkably quickly when a mushroom cluster erupts in your finger.)

I welcome your naming ideas, but, because this is my blog, I will make the final decision. Once I’m underground, I’ll relinquish all creative control to you, dear readers. I urge you patience since I may be here for a while yet.

 

 

Out, darn gout: the neverending story

I love Dr. Family, in a patient-doctor sort of way. She is sharp, effective, and compassionate. When I need her, she is there, three days per week. I simply have to plan my medical crises on Mondays, Wednesdays, and Fridays.

In the past when I’ve called her office needing an urgent appointment, her assistants have slotted me in promptly, usually the same day. But because there are many babies being born amongst her staff, these assistants are largely unfamiliar with me. They do not realize that I never call without a reason, and that, when I do call, I need to be seen promptly.

Last week, in the midst of fretting about Jelly’s health, I was also concerned about my own. My gouty finger was not healing and I decided a call to my trusted professional was overdue. I contacted the office first thing Monday morning and had an appointment within a few hours.

Dr. Family assessed me, and gave me a clear plan of action, which I followed to the letter. It helped but only temporarily. She also told me to call later in the week if I needed further help. So I did, only to be told that the doctor was too busy to see me that day.

I understand. Dr. Family only has so many hours in the day, and as attentive as she is when I see her, she could not slot in another appointment that day. But I still needed help before the weekend, so I asked Ms. New Girl if I might email the doctor a picture so she could give me some direction. I was pushing the boundaries here, but only because I was at a loss.

Tight bunch of tiny white enoki mushroomsI’d love to publish the picture I sent Dr. Family here, but to date I’ve spared you all gruesome images of my ailing body parts. I fear I’d give many of you, my faithful readers, nightmares if I shared the frightening shot of my gouty finger here.

Imagine a cluster of tiny mushrooms trying to burst through the end of my finger. That’s not as scary as the real thing, is it? I guess you can’t really judge since you haven’t seen the photograph, but trust me, it is.

Upon seeing my miraculous feat of nature, Dr. Family called me promptly but I missed her. Then she diligently consulted with a colleague, who suggested a new course of action. When I called back, Ms. New Girl told me not only to come in, but to stop by my pharmacy along the way to pick up a medication she would be injecting. Saved by the picture.

I’m not Dr. Family’s only patient, and I can’t expect her to fit me in whenever I need her. I could go to a drop-in medical clinic and discuss the matter with an unfamiliar doctor that does not have access to my medical history, but imagine how long it would take to bring that doctor up to speed. Whenever I can, I prefer to return to the doctors’ office where everybody (now) knows my name. Thankfully, Dr. Family agrees.

The injection worked famously. My little mushrooms are slowly disappearing, along with the pain they’ve caused. And so the saga comes to an end.

How to be a bad mother in one easy step

Basset with hot water bottle on head and covered in blanket

Remember how hesitant I was to start volunteering because I feared my precarious health would make me unreliable? I had visions of calling in sick on a regular basis, but I should have known better. I am a reliable person. If I say I’m going to do something, I do it. I don’t cancel any commitment unless I’m strapped to a hospital bed.

I am pleased to report that, several months in, my health has not affected my volunteering. I’ve had to cancel only one date because of illness, and legitimately so: I didn’t want to risk sharing an infection with an unsuspecting blood donor.

I’ve been feeling under the weather the past few days–am I still allowed to say that if I’m in remission?–but I had a PALS visit with Jelly scheduled yesterday. Of course we’d still go. I’m not contagious, I’m just not feeling 100%. What does the U.S. Postal Service say? “Through gout, fatigue, anemia, and fluid retention….” (That doesn’t sound quite right.)

It never occurred to me that one day Jelly might have to bow out.

Upon awakening at 7 a.m., I realized that Jelly had slept late. (She’s up with the birds, remember?) Most mornings I send her back to bed once or twice before we all get up. She didn’t wake us? t naively believed Jelly had finally overcome her early-morning awakening.

Then J. gave her breakfast, and I realized how wrong I was. When our dog is disinterested in food, we know she’s unwell.

Normally Jelly eats in record time. Those dogs who pick at their food all day? Jelly ain’t one of them. In fact, she has a special dog bowl that slows down her eating. Before she had her special bowl, she’d inhale her kibble so quickly that, soon after she finished, she’d leave her breakfast, each little kibble intact, all over the kitchen floor. (I’ll let your imagination fill in the blanks here.)

So J. and I both tried to recall what Jelly had scrounged in the backyard the day before, other than kale. There was the occasional blade of grass, and a quick nibble on some grass patching that J. had spread. For whatever reason, Jelly has always loved grass (no, I don’t mean marijuana) in any form. Could her gardening have caused her stomach upset?

Sadly, despite our stellar attendance record with PALS, Jelly had to pass on yesterday’s visit. I emailed the organizer early yesterday morning to apologize for the late cancellation. What I neglected to tell her is that a lawn is currently taking root in Jelly’s stomach, causing her some discomfort, and that if she’d only vomit, she’d feel a lot better. Some things are better left unsaid.

If only I could end this post here.

I am a terrible mother, joking about my sick one. While I was busy minimizing Jelly’s tummy ache, J. determined Jelly needed to see Dr. Animal. Turns out our pup has an infection, hence the fever, lack of appetite, and lethargy. She has shown some improvement today, thank goodness, as evidenced by a few fleeting tail wags.

Hopefully Jelly will forgive me someday for neglecting her care. If not, I’ll find her a good therapist, one who will let her up on the couch.

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

Green Thumb, meet Red Finger

a few radish sprouts growing

I feel so proud. After a week of building (I drilled two screws in) and seeding (I was deemed competent to seed, after intensive instruction) our vegetable garden, I am thrilled to report our radishes have sprouted. I can’t wait to eat the vegetables of my labour.

I’d hoped to continue to be involved in our burgeoning garden, but a medical complication has arisen: the last joint of my right ring finger is swollen, red, and hot enough to brand you, and even the lightest pressure on it brings excruciating pain. That O I just typed? It hurt like the dickens. So did each L and every period. I considered writing this post as one run-on sentence, but I didn’t have the gumption.

In yet another case of forgetting what I should know by now, I’ve been ignoring increasing pain in this finger over the last few days. The pain is at its worst in the middle of the night, and has woken me from a deep sleep four nights in a row. “What could that be?” I asked my oblivious self. Eureka! It’s gout.

I’ve never experienced full-blown gout in a finger before, although it was numbness in this finger that led to my new gout-busting regimen (recall those unsplittable pills). I didn’t realize how much I used my right ring finger–ah, to be a leftie–until it caused me jarring pain to do so. Brushing my teeth, washing the dishes, anything that involves holding, my ailing finger wants to jump in and help out. I squander considerable mental effort to stop myself from using this finger.

People usually experience gout pain in major lower-body joints, characteristically in the ball of the foot. Imagine searing pain with every step you take, your foot so swollen that your shoes don’t fit. In the past, my feet have usually taken turns being gouty, although sometimes they want the simultaneous privilege of paining me.

So when I finally realized what was happening, rather than jump on the medication bandwagon, I let it escalate for a while longer. What kind of baby uses liver-toxic medication for pain at the end of a finger? This kind of baby. Now that I’ve started self-medicating, I hope the attack will pass soon.

There are several ways I could view this turn of events. I could focus on how painful gout is and how miserable it makes me, misery that is only compounded by the lack of sleep. (The pain is worse at night.) That attitude isn’t helpful, is it? Or I could be hopeful that the new gout-busting medication I’m on, those other unsplittable pills, is working. I knew those pills would make things worse before it made them better. I’ve decided to make this my first gouty step toward eliminating my gout forever.

I’m anticipating one more collateral benefit: for now, I must delegate all gardening and other household tasks, including dish-washing, to J. (Not just pressure but heat exacerbates the swelling, compounding the pain.) J. may especially resent the extensive garden thinning required when she realizes how much I have overseeded. Oh well, she’ll get over it, as will I.

Things I should know by now, but sometimes forget

Handicapped door button

I’ve been going to have my blood taken on a regular basis for 17 years now. After all that practice, you’d think I’d know all there was to know about the process. This is what I know to do following the procedure:

  1. Put pressure on spot where the needle left a wee hole for at least a few minutes to promote clotting and minimize bruising.
  2. Anything that interferes with clotting makes this pressure all the more critical. Consider factors such as being on blood thinners (that was me once) or being low in platelets (that is me now).
  3. Any heavy lifting soon after the procedure, like holding the absurdly heavy lab door open for the person behind me as I exit, is contraindicated because it could interfere with clotting.
  4. Wearing a white shirt to the procedure is just plain dumb in light of my propensity to bleed.
  5. If any of these procedures aren’t followed, I may end up with blood stains on my clothing and/or a bruise.

Can you tell where this story is headed? Do I still get to tell you what happened this morning when I went to the lab to have my blood taken? It started off well. The needle prick was painless. I placed pressure on my wound following the needle withdrawal and, upon inspection prior to bandaging the spot, I appeared to be clotting well. Then I got up, put my jacket back on, walked through the waiting room, and pushed the heavy outside door open with the same arm that had just been taped up, first allowing the woman behind me through.

As I got outside, I felt a strange wetness on the same arm of my blood draw. “What might that be?” I thought curiously. “Why is my arm feeling increasingly drenched as I walk toward the car?” No lightbulb yet.

I’m sure you know exactly why my arm was wet. I too should have known, but it was fairly early in the morning and all my cylinders were not yet firing. I stood by my car, the unexplained wetness spreading down my arm, at which point the blood made its way beyond my jacket to my exposed hand. I have felt this wetness many times before, yet the physical sensation was not enough to jog my memory; I needed visual proof before accepting that I’d need to do a load of wash that day (or two, because I was wearing a white t-shirt).

With my evidence firmly in hand, I returned to the lab, using the handicapped button to open those heavy doors. I marched straight to the desk to seek help from the phlebotomist. My bloody hand proved sufficient evidence for her rally her troops to clean me up forthwith before I spread my gift of life all over the lab.

Oh well. What’s another load of laundry? Easy for me to say since J. does the laundry. She worries I’ll fall down the basement stairs. The ways I can be a danger to myself are infinite. Oh, and I bruise easily. Let me show you my arm….