Let us be your PALS. Pretty please. With dog treats on top.

I’ve been so busy weighing you down with heavy posts that I haven’t had time to tell you about our PALS interview last Saturday. Jelly and I underwent an initial screening to determine whether we deserved to continue on to the formal behavioural assessment.

Boy was I nervous. I haven’t undergone any type of interview, beyond a medical assessment, for a very long time. I’m an expert at providing my medical history, but that’s not what was required here. I feared I would blow it.

Despite my anxiety, I think I was alright. I believe I answered all the questions fairly, some even wisely. I was honest and forthright, I demonstrated my commitment to PALS, and promised I would do all that was asked of me to the best of my ability. Turns out often people sign up, pass the evaluation, and then lose interest. I’m not those people. I mentioned my leukemia, as I had on the application, but stressed that so long as I was well, I’d be an active, reliable volunteer. I was proud of how I handled myself.

Unfortunately, Jelly did not perform as well, despite my months of coaching. In fact, I’d give myself an A and Jelly an F. That little brat paced and whined for 20 of the 25 minutes we were there before she finally lay down with a big sigh. I was a nervous wreck, trying but failing to settle her while attempting to answer the thoughtful questions.

The two interviewers were very forgiving of Jelly’s ill behaviour. They ignored her much better than I did, called her over every so often for pets, and reassured me that, despite my humiliation, Jelly’s restlessness would not disqualify us from going forward.

Basset hound running, image blurredOne interviewer even said: “She’s just bored. She’s obviously a working dog who needs something to do.” Oh, what a lovely reframe! And how inaccurate. Have you ever met a Basset hound? Bassets are in no way related to border collies. Border collies are working dogs; Basset hounds are lazy, unless, of course, there are bunnies in the vicinity. One whiff of a bunny and a Basset moves faster than a speeding bullet, if she’s not napping.

No, Jelly’s whining and pacing indicated that she hated the lack of attention. I call it only dog syndrome. She was also probably annoyed that there was no food for her to pilfer and that there were no other dogs for her to play with. She couldn’t even off leash frenetically around the office like she does at home. Jelly was deprived of her usual ways to get in trouble, so of course she was bored.

From what I understand, Jelly will be far from bored during our behavioural assessment. This, our final hurdle, will be a series of very difficult challenges. I was relieved to learn she’d have to pass most but not all of the challenges, since she’s sure to fail the one involving treats strewn on the ground. Maybe we’ll just skip that station so as not to compound the humiliation I felt during our interview.

I know what you’re thinking. I have only myself to blame. And you’re right.

Sadness and I visit the therapist

Sadness character from Inside Out crying

In the old days, clients would see their therapists once or even several times per week. That’s how it was done back then, but not any more. Today clients often see their therapists on an as-needed basis. Most people don’t have the financial resources for weekly therapy. Clients will often come more regularly to start, and then taper off, returning when they’re struggling.

I have had many such clients. When they leave, I stress that they are welcome to return anytime if they feel the need. Over the years, clients have often done just that. Sometimes they’ll return once for a refresher, or a few times to address a particular issue, or even for another go-round regarding something completely different. Returning to a familiar therapist can be easier because the client needn’t start from scratch.

I consider myself a come-and-go client. Initially I saw my therapist regularly, then again when I was diagnosed with leukemia, and only occasionally thereafter. If I feel I’m not handling something well on my own, I book in. My therapist welcomes me when I call, and I’m always glad I’ve gone.

Yesterday, I saw my therapist for the first time in almost two years. That whole new-house fiasco discombobulated me, and I didn’t rebound as quickly as I normally would. I was having nightmares and not sleeping well and I even stopped eating for a few days. I knew then that I wasn’t happy. I decided I needed the kind of pep talk that only my therapist can give. I’m so glad I went.

We talked about what this new house symbolized to me–a move away from the losses I’ve experienced since I was diagnosed with cancer. New house=fresh start. Unfortunately, my therapist confirmed that moving to a new house would not rid me of cancer. Bummer. I was hoping she’d say otherwise, but she couldn’t in good conscience.

Bear with me for saying, yet again, that people don’t tolerate sadness in others well. If my friends see I’m sad, they want to cheer me up, and I’m grateful for that. I try to cheer myself up too. I joke myself out of sadness, and I avoid it by keeping busy.

But eventually sadness catches up with me and even overwhelms me temporarily. Sadness says: “Hang out with me for a bit. I won’t stick around forever.” Curiously, at these times, I don’t want to be cheered up; I just want to be sad. I’m an inept sad person, though. I fear that if I invite sadness over, it won’t ever leave. It always does. Truth is, if I don’t make time for sadness, it harasses me until I do.

Yesterday my therapist listened to my story and didn’t try to talk me out of how I was feeling. Then, I left my sadness at her office, since she’s more than competent to care for it in my absence.

Today I feel so much lighter. No, not literally. The scale chastised me this morning, but I told it to back off. I have enough on my plate right now.

 

You catch more nurses with kindness

I hope you realize how devoted I am to you, even in times of stress. I managed to type that last post with one hand while trying to stop the deluge coming out of my nose. In case you weren’t aware, I would do anything to keep you entertained at regular intervals.

I regret to inform you that my adventure did not end with my publishing that post. Soon after, my jump-into-action friend, Mr. Chauffeur, graciously drove me to the pharmacy for that special something to stop the bleeding. But by then I was too far gone. I finished a box of tissues on the excursion, and the bloody flood seemed nowhere near abating, so I capitulated. I called J. and told her I needed to visit the hospital forthwith, and I’d take a cab and meet her there. She didn’t think a cab was very practical given my profuse bleeding, so she drove me there instead.

My first words to the triage nurse were: “I’m sorry I’m not better dressed.” That got us off on a good footing. After she reassured me my outfit was acceptable, she told me an 8-hour nosebleed was legitimate reason to come in. I always need reassurance. Then she sent me to the Ear, Nose, and Throat chair, where a talented team deals with problems like mine every day. Every single person we dealt with over the course of that visit was incredibly kind and caring. Within 2 hours, my platelets were checked, my bleeding was stopped, my nose was cauterized and I was discharged. The ER moved faster than a speeding bullet last Friday afternoon. That ER is a well-oiled machine.

The only downside was the patient on the other side of the curtain, who had clearly never heard that “You catch more flies with honey.” She was very upset by the wait, and she and her husband expressed their discontent repeatedly. While we were bantering with our lovely nurse, Ms. Grumpy shouted, for all to hear: “Shut the #%$& up!” (I’ve never typed an expletive before. That was fun.) Later, she and her husband bemoaned the long wait because “we pay to get to the front of the line overseas.” The nurse replied, much more calmly than I would have: “That’s not the way it works here.”

Medical staff deal with all sorts of patients all the time. People who are sick are stressed and sometimes belligerent. Stressed or not, isn’t there still a level of respect that we all must adhere to? These clinicians are doing their job to the best of their ability with the resources they have. A visit to the ER takes time, and sometimes one problem takes precedence over another. Over the years, in addition to learning the art of dressing for the ER (you can review my guidance on this matter here), I’ve learned how to treat the medical staff.

I’m not kind to medical staff because I want better treatment; I’m kind because I know ER staff work hard in tough conditions and deserve my patience and gratitude. So that’s what they get, however crummy I’m feeling. I’m there because I trust they’ll make me feel better.

Quote with dog at top: Be the kind of person you want to meet.

The unexpected benefits of volunteering

Hand pouring water from can into canned soup in pot

I decided to volunteer for selfish reasons: I thought it might be good for me. I was excited about the potential for social interaction and for helping others, as well as the structure a new activity or two might add to my long and sometimes lonely days. I crave structure. So far, volunteering is all of those things and more.

What I hadn’t considered was all the swag that would come with the assignments, If we make it into PALS–wish us luck at our interview tomorrow–Jelly will receive a blue bandana to wear on shift and, maybe someday, a yellow vest. Canadian Blood Services provides an endless supply of snacks that I can eat if I get hungry during a shift. Cookies, juice, pop, a carboholic’s dream. So far I’ve avoided the Campbell’s soup, for obvious sodium-laden reasons.

(By the way, did you know that one cup of prepared Campbell’s Chicken Noodle Soup has 890 mg sodium? I retained fluid after reading the label.)

And then there’s my little red CBS vest. We volunteers need to be easily identifiable, and our blood-red vests set us apart from the crowd. I’ve never looked good in red, which now only accentuates my pasty white (anemic) complexion. But for my shift, I swallow my pride, knowing that the others look almost as bad as I do. No one looks good in red.

I bring my vest home every week and hang it in my closet. I hadn’t yet found any alternate uses for it off shift until last week I had a spontaneous nosebleed. In the olden days of my illness, I had frequent nosebleeds because of my blood thinners. Now I’m getting them because my platelets, those sticky things that make me clot, are low.

The other day, I was sitting at home reading a book and all of the sudden there was blood everywhere. I happened to be outside on the deck, so I leaned forward just in time to spare my clothing. A few hours later, the bleeding finally stopped.

I discussed this problem with Dr. Blood when I last saw her. She consulted the pharmacist who prescribed an ointment that constricts the blood vessels in the nostrils, thereby reducing the chance of recurring bleeds. Yesterday I drove across town to a special compounding pharmacy–who knew there was such a thing?–to have the prescription filled. The kind pharmacist asked me whether I’d like to wait. How long would it take? “About an hour,” she said. Waiting is not my forté, so I declined.

This morning, God punished me for my decision to leave the pharmacy. My nose started bleeding early, soaking my white t-shirt and necessitating an emergency laundry load. The red stuff has been flowing on and off since, from not just one but both nostrils. Don’t drop by. It looks like a slaughterhouse in here.

I am hoping that soon I will be able to leave the house. I’ve made several attempts, only to have them thwarted by a resurgence. What to do, what to do? Perhaps I’ll have to don my little red vest when I depart, just in case. If I’ve refrained from eating in the new car for this long, you can bet I’m not going to bleed on the upholstery.

I have to pee! A gay (but not happy) fable

Transgender washroom sign, with "Whichever" on it

I was out and about the other day and all of the sudden I really had to pee.

[Already you know this is a fable because people with liver problems never really have to pee, except for a few hours every morning when they are under the influence of their diuretics. Have you noticed I’ve never excused myself to use the washroom in all the years you’ve known me?]

I went looking for the public facilities and saw the sign for WOMEN. I was about to enter when a uniformed officer stopped me. “What do you think you’re doing?” the Washroom Police said sternly. “You can’t use this washroom. You’re gay. You will inevitably leer inappropriately at the other women in there and make them uncomfortable. I think you’d better use the washroom for MEN since you won’t cause any trouble there.”

So off I trotted to the washroom for MEN, but I encountered a few problems. First, I wasn’t sure how to use a urinal. Then I noticed the men in there weren’t so happy to have me see all their exposed you-know-whats. They screamed at me, told me I was a freak, and sent me out.

By this time I really had to go, and the Washroom Police were at a complete loss. The washroom for WOMEN wasn’t appropriate, and neither was the washroom for MEN. So the officer led me to a third washroom, a private one with no gender signage, and told me this was where I belonged. He stood outside until I was done. As I left, he told me I must use only this washroom in the future since I was now barred from entering the others.

From then on, I would alway remember to pee before I left the house.

The End.

Need I repeat this fable from the perspective of a transgender person or do you catch my drift? Which washroom would someone whose physical body is male but who is female in mind and spirit want to use? The one that matches her true gender. She has no interest in gawking at the other women in the washroom, and she is not at risk of sexually assaulting those women; she just wants to pee. (I am awestruck that people actually use these absurd arguments to deny transgender people entrance to the washroom of their choice.) Despite what some may fear, this woman is not an opportunist nor an exhibitionist. She just wants to pee where the other women pee.

Now what if this transgender person is a teenager in school? Adolescence is hard enough as it is; why make it harder by mandating which washroom a transgender student can use? And, no, in case you were wondering, creating a separate washroom for transgender students is not good enough. That solution only reinforces the notion that transgender people don’t belong with the rest of us. As if they don’t feel that way already.

So buzz off, Washroom Police. Live and let live. Or should I say, “Pee and let pee.”

Be prepared, even if you’re not a Scout.

Stack of four round chocolate black pepper cookies on a yellow plate

The Light the Night walk for Leukemia and Lymphoma is coming up quickly. Have you saved the date (October 15)? After weeks of stewing, I’ve finally come up with a name for my team: Annie’s Anemic Leukemics. It has a nice ring to it, don’t you think? Anyone who wants to join the team can register here.

On Friday, I celebrated my fourth cancerversary with my special hematology team, led by Dr. Blood. “Has it really been four years?” Dr. Blood asked with surprise. Yes, indeed, it has. I baked, of course, chocolate black pepper cookies, which were well received. My favourite nurse practitioner, Stephanie, came by just to say hi. Then she requested the recipe. It’s always a good sign when someone asks for your recipe.

I loved being able to tell the team that I’m feeling the best I’ve felt physically since my leukemia diagnosis four years ago. Of course everyone attributed my recent improvement to my higher iron dose. And so, dear readers, I vow henceforth to embrace my iron supplements, side effects and all. Bran muffin, anyone?

After reviewing all the good news, I surprised even myself by asking Dr. Blood for antibiotics when I’m not sick. J. and I will be travelling afar in mid-October, which would be perfect timing for another bout of C. difficile. Also, I seem to have an affinity for cellulitis of late, which has raised questions about my immune functioning. So I asked the dear doctor if she might entrust me with antibiotics for both of these possible infections were I to need them while I’m away. She agreed readily. I’ve never asked for medication just in case before.

Dr. Blood appreciated how difficult it might be to seek medical intervention in a foreign country, Google Translate or not. She told me she trusts I’ll know if I need the medication. In return, I promised not to sell the pills on the black market. How much do you think antibiotics would go for on the street, anyhow? Maybe I shouldn’t have promised that.

I’ve often spoken of how deeply I trust my doctors, how grateful I am for their care, and how likely it is I’d be long dead without them. During this exchange with Dr. Blood, I realized that she has come to trust me as well. She knows that if she prescribes a medication, I will take it as directed (or not take it needlessly, in this case). If she sets an appointment, I will show up punctually (thanks to J. the Anti-Procrastinator). If she arranges for a procedure or refers me to a specialist, I’ll be there with bells on. If she tells me to go to the ER, I might whine a little but I will go, because doctor knows best. Dr. Blood can also trust that, once a year, I’ll bake something ugly but tasty for her to thank her for keeping me alive. Any good relationship, a doctor-patient relationship included, is based on trust and reciprocity.

On that note, I wonder why Dr. Blood has never baked for me all these years. But when would she possibly find the time? She’s too busy keeping me and all her other patients alive.

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.

(Sadness enters stage right)

Picture of veranda with furniture and wooden ceiling

Do you remember a few years back I was crazy enough to buy a new car? My old car was ailing and I could not fathom being without wheels. I’d had leukemia for two years at that point, and didn’t know how long I’d be around, but here I am. I haven’t yet needed to buy the extended warranty but you never know.

You may not be surprised to hear, then, that over the past week, J. and I have been coveting a beautiful house that’s gone up for sale a few blocks from ours. It has been recently and lovingly renovated and has many attractive features. Oh, how I’ve always coveted a kitchen island, and a back door that goes straight out to the deck, and a front veranda.

We’ve been casually looking at homes for sale in the neighbourhood over the past year. We’d never leave the neighbourhood because our stupendous support system is here. Only a few of these homes have sparked our interest. This latest house ticked almost all the right boxes.

I should confess that there is absolutely nothing wrong with our current home. It is on a lovely treed lot with a beautiful fenced yard. It is in good shape and we have maintained it well. But our mortgage-free house would likely sell for less than this new home would cost.

We are so lucky that we have survived comfortably on J.’s income since I stopped working four years ago. We may be able to leave our retirement savings intact for some time even if J. retires from her full-time job, which she plans to do soon. This is not the time to take on a mortgage, however small.

In our discussions, J. actually considered working for a year or two longer so we could afford this house. Then she came to her senses. She’s been so excited about the possibility of retirement that working longer is crazy. J. has worked hard her whole life, and the last two years she has juggled two jobs. I support fully her retiring from her full-time position. She’s earned it.

After putting in an offer on this home, we spent the weekend convincing ourselves of how lovely and perfect our current home is, and how hard it would be to give up. Sure, that other house is gorgeous, but we are happy here and do not need to move. Despite all my attempts to convince myself of our wisdom in staying put, I’ve been feeling very sad about our decision to withdraw our offer. The right decision doesn’t necessarily make me happy.

I don’t dwell often on the impact cancer has had on our lives, including the drop in our income. Cancer or not, we have a great life and are blessed not to be living paycheque to paycheque as so many are. Heck, we are lucky to have food on our table and a newly shingled roof over our heads. By tomorrow, I will put Sadness away and focus on all I am grateful for. Or if not by tomorrow, then by Friday, for sure.

(Sadness exits stage left.)

Why does denial get such a bum rap?

Quote: Poeple don't want to hear the truth because they don't want their illusions destroyed, Friedrich Nietzche

I’ve been knee deep in denial lately, and I’m not apologizing for it. We all need denial to get through the day. I can’t speak for you, but I know that I’d be an emotional wreck without it.  I’d be thinking about death all of the time instead of just most of the time. Denial may be considered a primitive defence mechanism used by the psychologically unsophisticated, but I wear mine like a badge of honour. I hereby encourage you to hop on the denial bandwagon with me.

I was thinking about my favourite primitive defense last week at the pharmacy, when I was picking up my iron supplements. I have been taking iron for a few years now to compensate for my chemotherapy’s suppressing my red blood cell count. Without these supplements, I’d likely be chronically anemic. I buy one or two month’s pills at a time because they are costly.

I eternally hold out hope the doctor will tell me I can stop taking the iron. Yes, I deny I need the pills. Cost aside, why do I want to get off them? Let’s say they affect my score on the Bristol Poop Scale. I’ll spare you the details here, since those of you who’ve been on iron supplements will know exactly what I mean. Anyone who doesn’t know but is curious can look this information up easily on the internet.

Every time I see Dr. Blood, I ask her whether I can ditch these nasty pills. She has come to expect my question and her answer is, predictably, no. Last visit, she went so far as to double my dose, which was definitely a move in the wrong direction.

As much as I’ve convinced myself to despise these supplements, I’m wondering whether my increased energy might be attributable, at least in part, to them. If so, I’d have to embrace them fully, wouldn’t I? What if I reduced my iron dose, only to resume my sloth-like existence? Would I then have to admit the pills I hate are doing me some good?

My iron supplements are but one example of my penchant for denial. Denial has allowed me to preserve my basement office as a shrine to my working days, despite my currently seeing only the occasional client. Denial has conspired with me not to volunteer in case old (or even new) clients resurface. Maybe denial allows me to adapt to the changes and losses cancer brings at a snail’s pace. No wonder I rely on it so much.

Sometimes my denial is so firmly entrenched there’s no messing with it. Recently we consulted a financial planner to determine when J. might retire from her full-time job. He told us that, assuming we both live until 90–did he not hear me say I have leukemia?–we will have enough with our savings, J.’s smaller marriage-commissioner income, and my paltry disability pension. Did he say “live until we’re 90”? What a buffoon. So I asked him: “I can’t speak for J., but at this rate, I’m planning on living at least until 100. Can we still afford it?” He’s going to have to get back to us.

Waiting on a couch

There were mixed responses to my last post, but no Go Fund Me donations. I get the message, folks: one of me is plenty. A few readers were thrown by the whole nature-nurture thing. Would my clone really be me without my experiences and memories? Probably not. I’ve always been an idea person; perhaps I didn’t really think this through.

But my time for random musings is over, it appears. Now that summer is ending, I find myself with not one but two volunteering opportunities on the horizon. Expect more typos as my time to obsess over my writing will be reduced substantially.

Next week is my first shift at the Canadian Blood Services. I’ll be at 727 – 13 Avenue SW every Monday afternoon from 3-6 p.m. if anyone would like to stop by to give the gift of life. I’ll watch over you after you donate and alert a nurse if you need a new bandaid or faint unexpectedly. I’ll serve you soup and cookies and juice. That’s if I can manage to complete all the on-line training. I spent hours on it yesterday, and I still wasn’t sure of all the answers on the final exam. Thank goodness it’s open book.

In the midst of prepping for Monday, I dropped off my completed PALS application. The lovely Linda, administrator extraordinaire and kind person, greeted me. She also offered to schedule Jelly and me for our initial interview.

Assuming we jump that first hurdle, as most do, we’d undergo a behavioural assessment involving multiple volunteers and 13 challenging stations. But there’s one problem: J. and I plan to be away during the two fall assessment dates. Jelly and I may have to wait until the spring.

What did you say, Sadness? I know, I’m disappointed too.

Imagine you’re ready and excited for something new and then you realize it’s going to take months. Which brings us to the couch analogy. When I need a new couch, I choose the frame and the fabric and then I occupy the old, uncomfortable one for months until my purchase arrives. But what if, after 2 or 3 or 8 months, I’m told my choice of fabric has been discontinued, or my order never went in, or my sofa arrives but it’s damaged, and I’m back at square one? Do you see the parallels?

I think Jelly and I would make great PALS, but the powers that be may not assess us for several months. (I know, Joy, more time to work on improving Jelly’s obedience. Run off with your silver lining, would you?) Even after that long wait, Jelly and I may still fail to meet the behavioural criteria.

So I told Linda, who discerned from my application how serious I am about this venture, that since my leukemia diagnosis, time is of the essence. I had disclosed my leukemia in the application so I wasn’t technically pulling the L card, although you might beg to differ. Without further prompting, Linda offered to speak to the boss to determine whether there might be another way to speed up the path toward PALShood. Here’s hoping, because that old couch is getting mighty uncomfortable.

In the meantime, I’ll focus on being the best bloody volunteer I can be. Maybe I’ll even pick up a few extra shifts. Soup anyone?

Road sign says: Welcome to disappointment. Don't stay too long.