What I get for the price of hospital parking

Line of cars awaiting parking

You may have been glued to the television or internet on Tuesday, but I didn’t have the time or energy for that. I must say it took considerable effort to avoid watching the U.S. election results. I had to resort to Chopped on Food Network for distraction. While you were fretting about the election, my Tuesday was a typical day in the life of a cancer patient.

I visited the Cancer Centre with J., where I attended my regularly scheduled appointment. We arrived early to secure parking and I trotted off to the lab for an up-to-the-minute blood-analysis (ca-ching). While we awaited my appointment, the volunteer Cookie Ladies appeared with their warm tea and snacks (ca-ching for that endless supply of cookies and drinks). Sipping on tea is the perfect antidote to the stress of a cancer-related appointment.

A lovely hematology nurse called me in and assessed me (ca-ching). Then I saw a knowledgable hematology fellow (ca-ching, ca-ching), who consulted with with Dr. Blood (ca-ching ca-ching) and sent me off for another two months. My body and my blood are stable, except for an odd mouth infection I developed after a trip to the dentist last week. My magic mouthwash–yes, that’s what it’s really called–seems to be helping. Finally, I stopped by the in-house pharmacy to pick up two months’ worth of free chemotherapy (ca-ching ca-ching ca-ching, although there could be more ca-chings; those drugs are expensive).

Have I ever mentioned that Dr. Blood had to seek special dispensation for the government to fund one of my chemotherapies because it is not normally used for polycythemia? I’ve often wondered how I’d pay for that medication out of pocket or, even worse, whether I could afford it at all. Would my functioning decline were I not taking it? Thankfully, I needn’t worry about those things.

Man vandalizing parking meterFor my excellent and timely care on Tuesday, we paid solely for the cost of gas and parking. I’d pay an arm and a leg for parking in order to receive such fantastic medical care. (As an aside, I saw this picture in the news recently: in it, a hospital-parking-fee protester vandalizes the parking meter. Mr. Destructive, who do you think will be paying to fix that machine? Perhaps you might consider another means of protest.)

All this has me thinking of J.’s decision, at age 53, to retire in 13 work days (not that anyone’s counting). She could not have fathomed doing so if we lived in the U.S. Our health care costs would have been daunting, and early retirement would have been impossible.

While that new president was being elected, our grand niece was admitted to the children’s hospital in need of delicate spinal surgery to remove a growth. Imagine any family having to bear the cost of neurosurgery. Thank goodness these parents don’t have to worry about paying for treatment and can focus on more important things.

The results of the U.S. election remind me of how lucky I am to be sick in Canada. 20 million people in the U.S. have benefitted from Obamacare, and I can’t imagine their fear that their new government may alter or eliminate their health-care benefits. If need be, moving to Canada is always an option.

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Volunteering is bloody exhausting, but in a good way.

Child pouting with arms crossedI wish I could assure you I’m feeling happier than last post, but Sadness did not exit stage left as instructed. I’ve told her to go to her room and not come out until she’s less mopey, but she has refused thus far. Which leads us to the age-old question: If a child pouts in the bedroom, does anybody see?

The week has had its downs, but it’s also had its ups. PALS is still working on a potential fall start for Jelly and me, assuming Jelly does not steal food off the table or run scared from a cat during our assessment. Here’s hoping praying.

In the meantime, Monday afternoon I made it through my first volunteer shift with Canadian Blood Services. I put on my red volunteer vest and was trained by someone 30 years my juniour. Yes, I felt old next to those whippersnappers.

My job duties, which are similar to those of the Cancer Centre’s beloved Cookie Ladies, include:

1) Preparing food for donors. This involves making soup from a can, ensuring all trays and baskets are overflowing with cookies and other snacks, and stocking the refrigerator with juice and pop.

2) Feeding people after they donate. I am an expert at feeding people, so I enjoyed this task the most. I was struck by how grateful donors were to receive free food after volunteering their time to give the gift of life. No, thank you, donors!

3) Cleaning tables after donors have eaten. I learned I am competent to sort recycling and wash dishes. Please don’t tell J., who is the chief bottle washer in our family.

4) Monitoring donors, and new donors in particular, for any untoward reactions following donation, including excessive bleeding, vomiting, dizziness, or fainting spells. Thankfully, there were no adverse reactions during my shift. I’m not great in a crisis, remember?

5) Encouraging donors to schedule their next appointment before they leave, directing them to information on plasma and platelet donation, and suggesting they join the stem-cell registry, especially if they are young, male and ethnically diverse. Call it racial profiling if you must, but for a good cause.

I believe I met basic volunteer qualifications, for CBS at least. I may have even been overqualified in some areas, except when it came to deficient soup ladling skills. Nonetheless, over the course of my three-hour shift, I was fairly pleasant and efficient and made the occasional donor laugh. I may have to work on toning down my enthusiasm a bit next week.

To my surprise, I only teared up once during my shift. When the tables were overflowing with snacking donors, I was suddenly awestruck by the selflessness of these people, many of whom were repeat customers. One fellow mentioned it was his 65th donation. 65! That’s a lot of blood. How many lives has he saved along the way?

My leukemia has been a non-issue thus far for both CBS and PALS. Both groups have said: “Do the best you can.” The CBS scheduling gal will gladly accommodate my need for three-hour shifts. After standing that long, I was absolutely tanked, but it was a good tanked. I can’t think of a better distraction from Sadness.

Confessions of an unstable psychologist

Cartoon image of 50s woman crying, with "Buaaaa!!!" in crying cartoon bubble.Lest I’ve left you with the impression that I handle my health challenges with grace and humour, I must acknowledge that I was an utter basket case throughout my medical mayhem last week. Let’s review these events more honestly. No laughing, okay?

As I sat waiting for Dr. Woman, I had my first full-blown and most certainly stress-related migraine in months. Although I held it together with the doctor, as soon as I left the office, I started crying. It was a little embarrassing, although I doubt I’m the first one who’s cried in a hospital. I even called J., asking her to leave work and drive me to my next appointment. I never do that, do I, J.?

No wonder Dr. Eye then questioned my assertion that I suffer from dry eyes. Maybe she wants to follow me not because of my health but because she thinks I’m a malingerer. I’m fearing a referral to Dr. Shrink at our next meeting.

After my long day, I stopped by the pharmacy to pick up Dr. Eye’s prescription, only to be displaced in line by an angry fellow berating staff because there were no chairs for people with impaired mobility. Although Mad Man walked up to the window with ease, he made a point of limping off, bemoaning his arthritic pain and protesting that I, a younger, able-bodied person, would be served before him. My inner churlish child, who was long overdue for a nap, blurted: “Yes, I just have leukemia.” Not my finest moment, but you know I’m a bag already.

I thought I was doing a bit better on Friday, but no visit to the Cancer Centre is easy. Thank goodness for the hug and another “I love you!” from Radiator Salima upon arriving. With my heart a-twitter, J. and I headed to a cramped waiting area, where my beating heart was quickly stilled. Six people, 8 chairs, and a patient’s wife loudly bemoaning the tardiness of the doctor–15 minutes late is early for any specialist in my books–the fact that doctor visits are so brief, and the high cost of hospital parking. Everyone but J. and I was engaged in this festive discussion. I almost fled the building screaming, but just in time, the nurse called this patient in, thereby ending the conversation. My blubbering restarted, which J. managed to soothe while responding to urgent work emails. Now that’s multitasking!

That day, I realized how hard I work not to let others’ negativity affect me. Sometimes I fail. Why was I surprised by all the tears? They were fairly predictable now that I look back on it. Lots to process over a short time, with a few extra stressors thrown in.

What turned things around? A lovely young pharmacist we’ve met before walked by, saw that I was upset–bet she too wouldn’t believe I suffer from dry eyes–and turned back to ask if I was okay. Then the Cookie Ladies arrived. I didn’t cry when there were no Fudgee-Os, thank God. Soon after, I was discharged by the kindly Dr. Radi-O, and I went home.

I can’t say I was chipper for the rest of the day; I was exhausted and trying to make sense of all my news. But my eyes are dry again. Maybe I’ll be able to circumvent that Dr. Shrink referral after all when I see Dr. Eye later this week.

 

Make way for the Cookie Ladies

Busy waiting room.

          It’s kind of tight in here.

If you’re not convinced we need a new cancer care facility in Calgary, just drop by the one we have.  I’d be glad to show you around, but we may need to push our way through the unrelenting crowds.  The tour won’t take long–it’s a fairly small area–but in case you can’t find parking (another space issue I won’t get into here), I’ll try to describe the setting for you.

The larger waiting areas are often standing room only, no matter the time of day.  Our longest wait is in an unadorned windowless basement hallway, where J. and I jockey for adjoining seats.  Nurses appear magically from the bowels of the building, shuttling waiting patients in and out of the few treatment rooms.  During one visit, one of these rooms was unavailable following a severely ill patient’s visit until housekeeping could sanitize it.  Another time, my doctor had scheduled twice as many patients–hers and those of a vacationing colleague–in the few available rooms.  Needless to say, such a lack of space combined with unavoidable appointment delays increases the hallway crowding.  Most patients are resigned to waiting among the masses because we know we need to be there.

Oh, I see the Cookie Ladies approaching!  (No, I’m not being sexist, I’ve just never met a Cookie Man.)   These gracious and generous volunteers regularly make their way through the restless crowds offering coffee, tea, juice, cookies, even crackers for those who can’t stomach much else.  They serve their hot drinks in china tea cups which they later retrieve.  (What could be better than not having to do our own dishes?)  If I’m there long enough, I may encounter them not just once but twice over the course of my visit.  I imagine if I asked for a second pack of cookies, they would comply.  (Truth: I have asked and they did provide, with a smile.)  The Cookie Ladies are a bright light in an otherwise dreary day, and if you look around, you’ll see hoards of smiling patients nursing a warm drink and a packet of unhealthy cookies.  I doubt I’m the only one who goes in search of the Ladies if they haven’t made their way to me within the first hour or two.  A visit to the cancer centre is just not the same without them.  Anticipating their presence helps the time pass, and enjoying their wares is the best distraction, for me at least, from why I am there.

I hope I’ve given you some sense of the need for more space for Calgary’s cancerous community.  If you happen to be involved in the design of the new building, please add more treatment rooms, larger waiting areas, and maybe even a few windows, if that’s not too much to ask.  But most importantly, make sure there are wider hallways so the Cookie Ladies can manoeuvre their carts more easily.  The easier it is for them to get around, the better my chances of scoring extra cookies each time I come.

The cancer roller coaster

roller coaster

Well, my visit to the cancer centre yesterday was not quite what I was anticipating. There were high points and there were low points.

Let’s start with the high points, since there were many: 1) the doctor was as close to on time as she has ever been; 2) my chemotherapy has continued to send those cancer cells running for the hills; 3) the pharmacy finally gave me a non-childproof container as per my request since, even as an adult, I can’t master the childproof ones; 4) my great medical team of doctor, nurse, and stellar nurse practitioner gave me the thought, care, and attention I needed; 5) I was at the hospital so long (more later) that I scored not just one but two visits from the Cookie Ladies; and 6) I finally got to taste the tuna sandwich with fresh veggies and hot peppers that J. had been raving about since my long stay in hospital many months ago.

On to the single, unfortunate low point: I have become anemic since last visit and, although J. was noticing some signs, I hadn’t really been aware of much change in my functioning. Since I am chronically exhausted, I find it hard to judge if I am more or less tired than usual on any given day. (On that note, I’ve always been bad at the doctors’ “Rate your pain on a scale of 1 to 10” queries too.) Now that I look back on it, I can see the signs, but I’m not sure I would have noticed the general fog I’ve been in without input from my astute partner and the objectivity of blood testing.

Despite the doctor’s timeliness, then, we ended up spending a very long day at the hospital while I became the grateful recipient of two pints of lovely B+ packed red blood cells. (You blood donors should know how valuable you are to us cancer folk.) Now my leukemia team just has to figure out what’s going on. Unfortunately, a dramatic drop in my red blood count just like this one landed me in hospital when I was first diagnosed with leukemia, so I’ve had to work hard not be agitated by the unexpected news. I will admit to another restless night as I tried, unfortunately between midnight and 3 a.m., to make sense of what had happened.

By now I should know that curve balls are a fact of chronic illness. Things can be going along well…and then they’re not. The key for me is not to get too caught up in these unexpected events–I WILL sleep tonight, if it kills me–and to keep living. So I’m focussed on a planned trip to Vancouver this weekend, and trusting I’ll get the go ahead to be anemic in another province. Really, if anything goes awry, I’ll only be an hour’s flight away. And I imagine they have hospitals in BC too.

A visit to the cancer centre

CML blood smear

My blood used to look like this.

Tomorrow I have an appointment with my cancer specialist, my first in three months. I must admit I’d rather hang out somewhere other than the Cancer Centre.  Everyone there is extremely nice–there are even Cookie Ladies, gracious volunteers who offer free tea and cookies–but it’s still a hard place to visit. I realize I look quite well relative to many other patients: I have most of my hair, my body is fairly normal, I don’t require a protective mask, but I am pale from anemia. Entering this building is a reminder that I’m on the same team as these patients, that I once looked like them, and may well look like them again in the future.

I was pretty sick when I was first diagnosed with leukemia and was hospitalized for a few months. By the end of my stay, I had lost 20% of my body weight, my belly was markedly distended, and I was jaundiced. Back then I looked like I belonged among my cancer-fighting peers. It took me many months to recover once I was finally discharged and initially my visits to the Cancer Centre were scheduled weekly. Thankfully, my appointments were quickly spaced farther and farther apart.

The medical feedback has been good. My chemotherapy, a small white pill I take every morning, has slowly but surely beaten my cancer cells into submission. CML doesn’t really go into formal remission, but the “bad” cells have been decreasing steadily, to the point where they are becoming hard to find. In fact, in just over a year, I’ve become such a low-priority patient that I am now followed by a highly competent and caring nurse practitioner. I imagine I’ll see the doctor again someday, but there’s some comfort in knowing she feels she can pass me off to someone else.

However infrequent these appointments now are, I always have a bit of trepidation as the date nears. I can’t help but do an internal review of how I’ve been feeling. Have I been more tired or unwell? Are there any other signs my condition has worsened? And how will the doctor interpret my bloodwork? Is my chemotherapy still killing off those nasty cells?

I realize one day the news from the doctor may not be so good. Maybe my chemotherapy will start to lose its effectiveness, or maybe my body will stop tolerating the medication and I’ll have to try something new. But that could be years from now, so I try not to let my mind go there. Sure, I probably won’t sleep all that well tonight–Who am I kidding? Last night wasn’t so restful either!–and I’ll be keyed up until the appointment is over, but I trust all will be fine. If there’s cause for concern, I’ll deal with that when the time comes. For now, I’m just grateful to be well.