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….

The perils of autocorrect

We’ve all had an experience with autocorrect. Our overly zealous word-processing programs have stepped in to change a word we’ve written into something else entirely. This happens a lot to me because I often make up terms like “cancerversary” and “Dr. Radi-o” in my blog.

This leads me to today’s story, which I probably should not be writing on Yom Kippur, the most pious day of the Jewish calendar. While good Jews are at synagogue, repenting for their sins against God, I am at home writing. There you go: the day isn’t even over and I’m already sinning against God.

An important part of this observance is fasting from sundown yesterday until sundown today, after which the self-deniers get together to break the fast. For many years, whether I attended synagogue or not, I abstained from eating on Yom Kippur along with my tribe mates. Except that I don’t fast anymore. I haven’t since I was diagnosed with my blood clot in 2000. Blood thinning medication is affected by many things, including what and how much people eat and drink.

Thank goodness Judaism is a compassionate religion. Since my medical challenges have prohibited fasting, God has granted me a pass. I imagine other religions would show some flexibility in comparable situations.

But there’s one catch now: I haven’t been on blood thinners for some time, and blood thinners were the primary reason I ate on Yom Kippur. So, against my better judgement, I did some internet research to determine whether I was making excuses to avoid the discomfort of not eating, or whether I’d be safe to fast again.

The research I found–funny how I can always find health research to support my biases–suggested that, blood thinners or not, fasting is out. Fasting could endanger my already taxed liver, and it’s contraindicated for immunocompromised people like me. Thank goodness, I’m still off the hook.

My dear friend M., a more pious sort than me, has spent the day in synagogue. Despite her busy day of atoning (although I doubt she has much of anything to atone for–I should have offered up my sins to help her pass the time), M. invited me to her house for what we Jews call a “break fast” at sundown today. I declined, partly because breaking the fast with people who have not eaten only compounds my guilt for not depriving myself like my fellow Jews.

But then I reread M.’s email. Her autocorrect, in the spirit of a controlling relative, changed her invitation from “break fast” to “breakfast”. That darn program just couldn’t help itself. Breakfast sounds like the perfect invitation for me on Yom Kippur. I could fast while I slept, and ate when I woke up like I do every day.

Oh my gosh, did I miss the party? M. is the consummate entertainer, and she always has the best food. Why didn’t I read her invitation more carefully? I could have told her I’d be available. I was not at synagogue this morning and I woke up mighty hungry. What was on the menu, M.? Did I miss bacon? I could have sinned yet again before noon today. Oh well, there’s always next year.

Why I don’t have orthorexia

Brown basset hound eating carrot.First a quick update on some important matters: 1) I am still flossing. I don’t understand it either; 2) I am still matching my underwear to my yoga pants most days, although I forgot today, which was unfortunate because downward dog can be a compromising position; and 3) I see Dr. Blood tomorrow, but so far so good on the new chemo front.

As the latest heat wave abates, I’ve been given permission to use the oven again. I was going through baking withdrawal. If you were here, you’d smell the Ghirardelli brownies (yes, from a mix; I was tired) wafting from the toaster oven. I’d share some with you but I’m not good at sharing so I haven’t invited you over.

Those brownies are just one of many signs that I don’t have orthorexia. Have you heard of this latest unofficial eating disorder? Orthorexics restrict their eating to foods that are healthy for them. A lot of us do that, but to be orthorexic, the behaviour must interfere with your life or impair your functioning in some way. Perhaps you become obsessed with eating “good” food (check), you judge those people who don’t eat like you (check), or you lose pleasure in eating (Are you kidding? Hurry up, brownies!).

I’m sure I have some features of orthorexia. I wander the aisles in the grocery store, looking at labels in the prepared food section, eyeing the baked goods, and fawning over the dips and cheeses, all the while mourning the sodium counts. Then I fill my basket with vegetables and fruit, and go home to cook bland food.

It would be a challenge to be orthorexic because the nutritional advice out there is always changing. I’ve heard that some nutrients may be good for my liver and others for cancer. Oh, and I should fit in probiotics for my gut. Coffee, the ultimate healer, was touted recently for reducing liver damage (in alcoholics, mind you; I’ll have to take up drinking to benefit), yet its consumption may damage my esophagus, which is fragile because of my blood clot. Can I mainline the stuff and bypass my esophagus altogether? Would IV coffee still make me perky?

Then there’s all the conflicting information I’m facing. I’ve read people with cancer should eat a high-protein diet to keep up their strength. How do I reconcile that with the high-carb, mostly vegetarian diet recommended for liver disease? I can’t do both simultaneously.

So sure, I’ll aspire to be orthorexic; I just need some clear guidelines. And then I’ll need to make sure I don’t get fat. Were I to consume all the foods reputed to be healing, I’d be eating constantly and would most surely gain weight, which would only necessitate more careful matching of my underwear to my yoga pants, downward dog or not.

Until I sort all this out, I’m applying the twofer rule: if a food can help me on both the liver and cancer fronts simultaneously, it’s in. Otherwise, I’ll have to pass. So far blueberries, asparagus, and my beloved coffee are on the list, at least to start. Hopefully, I’ll be able to add a few more foods soon.

Oh, there goes the timer. Don’t want those brownies to burn. I’m sure if I scour the internet, I’ll find a website that will justify my adding brownies to my accepted food list. If not, I guess I’ll just have to share after all.

 

A guide to dressing for the ER

I seem to need to check in at the ER on a fairly regular basis. Yesterday, I woke up with what had felt like a bruise the day before but became a painfully swollen thigh overnight. Because I am recently and anxiously off my bloodthinners, I needed a doctor to tell me my symptoms were not those of a blood clot. So off to the hospital we traipsed.

I’m first to admit I’m a bit overwhelmed when I’m headed to the hospital. I’ve learned to dress in comfortable clothes that I can easily whisk on or off as needed. I sorted out the yoga pants that would accommodate the swollen leg, the t-shirt, and the hoodie fairly easily. I didn’t think much about the undergarments (they were clean), although I know some people do. But I was very negligent in picking socks. I was wearing my runners so I randomly chose short old sport socks.

Feet of person wearing dirty sport socks.

Are these lesbo socks?

I should probably explain that, although I generally take considerable pride in my appearance, my sports sock collection is old. Savers of the earth that we are, we don’t wash with bleach, and so my formerly white socks are, indeed, formerly white. Add to this the shedding dog and let’s just say these socks, although very clean, looked filthy. In fact, J. was utterly mortified when I removed my shoes to hop up on the bed. If I recall correctly, her words were: “How could you wear lesbian socks?” I can’t tell you what a lesbian sock is, however; you’ll have to ask J. for the definition.

To be fair, I was a bit mortified by my socks as well. Since the doctor had not yet come in, I begged J. to switch socks with me. (The ability to share clothes is one of many benefits of a same-sex relationship.) Ever the devoted and self-sacrificing partner that she is, J. did indeed agree to switch socks with me. She then proceeded to keep her lesbo-socked feet well hidden under the bed for the rest of our stay.

We remained at the hospital for many hours and left with more questions than answers, thanks to a kind, caring ER doc who concluded: “You are complex.” Because I was not in any immediate danger, this doctor eventually sent me home to follow up with Dr. Blood and Dr. Liver. I’ll admit I shed a few tears out of fear of what this swelling, and some new abnormal blood tests, might indicate. And, because of my vanity, I worried I might now have to deal with a third-trimester leg in addition to my pregnant-looking belly. I see Dr. Blood on Tuesday and hope to have more answers by the end of the week.

Very dirty sport socks

Lesbo socks, for sure.

When I’m scared, I often distract myself by finding something to laugh about. Yesterday it was socks, the previous ER visit, the fellow who chose to groom his toenails in the waiting room. (I am not making this up.)

Laughing about my lesbo socks helped me through an otherwise gruelling and stressful day. If I can’t find the humour myself, I can trust J. to find us both something to chuckle over. I don’t know what I’d do without her (and her socks).

My blood is now thicker than water

Beautiful cloud over water with silver lining.

Don’t tell me you can’t see that silver lining.

I’m sure if you’ve been following me this past few weeks you know it hasn’t really been a party over here. There’s been the trip cancellation, the surgery, the recuperation on the couch, and much too much whining from me. I’m sure you’re getting as sick of me as I am.

So I thought it might be important to focus today on the very large silver lining that has come of this recent turn of events. There is always a silver lining. Sometimes you have to get out the microscope to see it, but it’s always there. In this case, it’s easily visible to the naked eye. My physicians have decided that my blood no longer needs thinning.

I was first prescribed blood thinners 14 years ago when a clot was discovered outside my liver. The first blood thinner I was on, commonly used as rat poison, could be affected by many things, including food I ate and drugs I took, e.g., not too much spinach (thickening), no more Advil (thinning).

Then I landed in hospital a few years back and my doctors decided to switch me to my current blood thinner, which is injected daily. The one that makes me bleed on white couches and bruise at my injection sites. It costs a small fortune. (Thank goodness for drug plans.)

When my hematoma got ugly a few weeks back, my doctors advised me to stop my blood thinners so surgery would work. Then Dr. Liver and Dr. Blood together determined I could remove myself from these drugs altogether. An ultrasound showed I had developed some detours around my clot so blood could still make its way to my liver. The body is amazingly adaptable.

And so over the past 10 days, in the midst of all my chaos, I’ve not had to get up and endure my morning injection. I’ve put my bandaids and steri-pads under my sink, hopefully to gather dust. I’ve not made myself bruise or bleed, and not just because I’ve spent the week on the couch. And my current bruises have been vanishing before my eyes.

As much as I’m relieved by this turn of events, a part of me is wary. There must have been some reasons doctors initially believed I’d never come off these drugs. Also, my dear Sister in Liver Disorders needed her new liver because her doctors decided she too no longer needed her blood thinners many years ago despite an earlier clot. This decision resulted in more clotting and Sister’s eventually needing someone else’s livelier liver.

I still have polycythemia, which likely caused my clot. But my doctors seem to believe I’ll be fine without these drugs, and I need to trust them, and I do. They’re the ones who got me discharged from the ICU two years ago. (Not everyone gets out of that place alive.) How could I not trust them? Just let me be anxious for a little while yet. Change may be easy for my body but it’s tougher for my mind.

Stressing about not stressing

I’m afraid that circumstances beyond my control interfered with my writing last week. You see, I was busy collecting frequent flyer points at the hospital. And I was heavily medicated with narcotics. In the midst of cancelling our long-planned vacation, I was forced to address the growing, months-old hematoma on my knee. After involving every doctor I know and more last week, a plastic surgeon excised my unseemly lump last Friday.

This operation was no small feat. I needed to go off my blood thinners, I needed a platelet transfusion, and I needed scans to rule out other causes for the increasingly painful ugliness. And here I am, on my couch, elevating my leg and, as per doctor’s orders, trying to keep my blood pressure down for the immediate future.

So, in my unending curiosity, I did some internet health research–shame on me–on factors that elevate blood pressure. Let me share these with you. Perhaps you’ll find this information useful someday.

Small brown dog looking overwhelmed.

That’s me, cool as a cucumber.

You probably know that stress can increase blood pressure. Just think of someone who is boiling mad and how red her cheeks get while she screams at you. Thankfully, I am a very calm person whose stress rolls off her back, so this is not an issue for me. (As if.) If I don’t pick up the phone this week when I see your number on my call display, please don’t be upset. Just know you obviously cause me stress and I don’t want to raise my blood pressure by speaking with you. I’m just avoiding you to promote my own healing. (N.B.: blog followers do not fall into this group.)

Smoking and alcohol consumption increase blood pressure temporarily and over the long term. I do not indulge in either of these, although every so often I dream that I am having a cigarette. I’m not sure what this dream means since even dreaming about smoking makes me cough and gag.

Drinking alcohol is out of the question, as you know. I did have a rare cup of coffee Saturday morning to counter the effects of several days of sleeplessness, not realizing that caffeine too could cause a spike in blood pressure. Perhaps I should have done my research first. Oh, no! Does this mean no chocolate this week? Let’s just pretend we didn’t know that.

Use of illicit drugs, such as amphetamines and anabolic steroids, can also raise blood pressure. If I’m too square to smoke or drink, do you really think I’m going to be abusing street drugs? I’m much too uptight for that.

I didn’t realize that sudden or strenuous exercise can raise blood pressure. What a bummer, since physical activity is my Prozac. Having to lounge on my couch while I heal is killing me. In fact, not exercising will most certainly add to my stress and increase my blood pressure. Maybe I should be exercising to keep my stress down. Do you think the doctor will agree?

Finally, over the long term, weight gain can increase blood pressure. Well, if I’m stuck on the couch, stressed because I can’t exercise, do you really think I’m going to maintain my usual slim physique? I’m not hopeful, especially since the first thing I turn to when I’m stressed is food.

Just thinking about reducing my stress is stressing me out. There’s no hope for me. I’m off to the gym, you can’t stop me. But first, where did J. hide the darn chocolate?

The perennial party pooper

Man refusing alcohol with hand out; had has "NO" printed on it.

Not for me.

Don’t worry, I have no plans to talk about my GI tract today. When I did earlier this week, no one even commented, which was kind of a let down, to be honest. I’d have thought someone would have something snarky to say, but no, only silence. You folk are clearly more anal retentive than I realized.

Today I’m talking about what it’s like to be the one who never drinks, the self-designated driver, the “I’ll just have water” person in the group. Yes, that’s me. I will turn you down if you offer me alcohol, and I’ve done so for years.

I can’t claim I’ve never had a drink, since I was in university once. In fact, the night I defended my graduate thesis, I got so drunk that the room started spinning. Why admit I put a glow-in-the-dark sticker on the belt buckle of a person I had a crush on? Do you really need to know? What’s important for you to know is that I got drunk once, and it wasn’t pretty.

But I never much liked the taste of alcohol; if I were going to imbibe, I’d go for something sweet with alcohol thrown in. Fuzzy navels were my favourite, when I had one. And, to be frank, I never much liked the way alcohol made me feel–drowsy, cranky, and gross the next day, even after just a beer or two. So giving up booze was no big deal.

No one has ever told me I can’t drink, but were I to ask any of my doctors, I assume they’d recommend it, for a few reasons. First, I have a blood clot and am on blood thinning medications. Alcohol is a blood thinner as well, and can interfere with the effects of these medications. I had so much trouble regulating the thinness of my blood for many years that I didn’t want anything to mess with that. Blood that’s too thick can clot, but blood that’s too thin can be problematic as well.

I also assume that putting my compromised liver under any additional stress through alcohol consumption would not be a great idea, so I just don’t do it. Why take the risk? I’m trying to keep my liver happy, remember?

I wonder how often people assume that, because I don’t imbibe, I’m a prude or a snob or I’m scorning them for drinking. Just so you know, I’m not. Occasionally, I wish I could join you, and I wish I enjoyed drinking as much as you do. It looks like fun sometimes.

For now, I’ll skip the wine pairings with the food, I’ll pass the glass of champagne for the toast to J. after I take a pretend sip (she doesn’t mind), and if I’m ever offered free alcohol, I’ll have no trouble finding a taker. Hey, maybe this would actually be a good way to make friends–giving them my free booze.

Now if you told me I had to give up chocolate or Jelly Bellies, you’d have a fight on your hands. Thank goodness these don’t thin blood.

Jewish city girl attends country wedding

This weekend, J. and I ventured up north of Edmonton for the marriage of J.’s youngest niece to her high-school sweetheart. I knew I would be out of my element in many ways, but I was looking forward to celebrating the beginning of a new phase in this lovely young couple’s life.

My illness has interfered with many aspects of my own life, but it has disrupted J.’s life even more. I managed to get sick with my first blood disorder and my impressive blood clot just before J. and I first met. Because my energy is low and at points I have needed intensive caretaking, J. has seen much less of her extended family since I came on the scene. She has missed many family celebrations. Her nieces and nephew have grown up, partnered off, and created families of their own. She has seen pictures of children she had never met. So much has changed over this time.

Despite how much we have both missed, both J. and I were welcomed warmly to this celebration. We were embraced by extended family, who greeted us affectionately and showed interest in our lives. We could not have asked for more. I was particularly struck by the number of people who were aware of what we had been through of late and asked how I was doing. And they weren’t just asking; they were clearly inquiring about my health, they were aware I was not working, and they wanted to know how I was managing day to day. Everyone was kind and concerned and attentive.

Furthermore, my medical needs were understood and accommodated. The family was accepting when, rather than joining the family get-together between the ceremony and dinner, J. drove me to our hotel so I could nap. J.’s sister kindly arranged for our family pictures to take place immediately following the ceremony so I’d have time for that critical nap. And when we left the festivities early, people understood I probably would really turn into a pumpkin, and not just because I was wearing my first dress in years.

The wedding traditions may have been different than many of those I grew up with, but that was no matter. Jews and Christians alike bless the meal before they eat; they just alter the words a bit. Instead of the hora, I witnessed incredible two stepping. The speeches were funny and affectionate and moving. Of course I cried; I always do. And I imagine questions about the arrival of progeny will start immediately. The bride has some catching up to do, since her older siblings are already loving and caring parents. There was so much to celebrate.

Couple walking down the aisle just after wedding ceremony.

Hitched!

Here’s to the newlyweds! May they enjoy many happy, healthy years together. I know they are surrounded by love and support, just as J. and I experienced at this lovely celebration. And I have no doubt there will be many willing babysitters when the time comes.

Sisters in liver disorders

Last week I had coffee with a lovely woman who has had struggled with some of the same liver problems I have.  She too has dealt with blood clots and blood thinners.  Her story is more dramatic than mine, though: one day, her liver kicked the bucket, and she needed a new one, pronto. Thank goodness she got one after one critical day on the transplant list, to the envy of her fellow transplantees, many of whom had waited much longer. Had a match not been found, she wouldn’t have been able to make it for coffee or anything else for that matter.

Talking with her helped me realize how people with serious health conditions deal with so many of the same issues.  D. has been following this blog, and she told me she can relate to many things I write.  Her experiences suggested to me that maybe we are all more similar than different in health and beyond.  Like me, she has experienced unexplained hair loss, a cornucopia of pills, and emotional and physical changes that stymie her. She too received fantastic medical care when she really needed it. We swapped stories of diuretics and blood thinners and diet restrictions. Like me, D. has suffered post-traumatic symptoms relating to her prolonged hospital stay, and she too has survived a brush with death.

Person holding gift out (part of his body), captioned "Organ Donation"

Despite all our health similarities, there are significant differences.  D. spoke of her kinship within the organ and tissue donation community, her pressing need to thank the donor’s family for granting her the true gift of life, and her now understanding why organ donation is so very important. D. is a vibrant example of what donation can do for someone, and she knows she was one of the lucky ones.  Many people who need organs don’t find a match in time.

I can’t imagine how far D. has come in the 7 months since she received her new and improved liver.  She is not only a survivor, she is thriving. This past Saturday, with the support of family and friends, she met a goal she’d set in hospital of participating in the first of two provincial Transplant Trots in support of organ and tissue donation. I am astounded by her strength and her insights.  Although I am not a member of her Transplant Club, I feel a kinship with her through other challenges we have shared.

I understand D.’s road to recovery will be long and intense, and there will likely be setbacks, but I have no doubt she will survive.  And she is doing it all with humour and grace. She’s the kind of person we could all learn from.  In fact, if we’re lucky, she’ll write a guest post sometime.  But she’s got other priorities right now, the first of which is staying well.

P.S. Did you know Alberta’s Organ and Tissue Donation Registry just went on line? Check it out here.

No regrets

I’ve had the chance to visit with friends over the past few days. Three very different people who have all had to deal with very challenging situations in the past few years. They hold one thing in common: they took action, making significant changes to feel better. I respect that.

Their collective resourcefulness was highlighted yesterday as one friend shared his impending move to a new job after over 20 years with the same company. He was nervous but excited to be taking a huge risk with great potential rewards. It had been quite a while since he’d enjoyed his work, so imagine that.

As this friend was describing this exciting opportunity, I realized how important it is for all of us to make changes if we’re not happy where we are. I’ve never understood people who stay in situations that clearly make them unhappy. People who work every day in a job they hate or stay much too long in a relationship that is unhealthy or unhappy.

As a psychologist, I’m not the most patient with clients who want to complain about their situation but don’t want to do anything to make things better. I can only be supportive for so long before I want to shake them.  (I never have, don’t worry.)  But I remember a supervisor once telling me that it’s not necessarily empathic to nod and say “Boy, that’s tough!” for too long because you won’t be helping the client figure out how to make things better.

Sure, there are things we can’t change–I’ll always have two blood disorders and an ugly blood clot, barring unexpected medical advances–but we can still figure out how to make the best of a challenging situation. If I can’t control these ailments, I can control how I approach life despite them. I can choose to be happy and live well.

Woman kissing a frog

We’ve all done it at some point.

I don’t mean to preach because I don’t always succeed at this myself. Trust me, I kissed my share of Princesses Charming before I found someone as caring and loving and kind and loyal and patient as J. And maybe I’m just lucky that I happened upon work I really enjoy. I admit I left one job I hated only to pre-empt my firing.

Do I deal with problems more expediently now that I’m older and wiser? Not always. In the year before I was diagnosed with leukemia, I was I-forgot-to-rinse-out-my-shampoo and I-got-into-three-minor-car-accidents and I-was-a-walking-zombie exhausted before I decided I needed to reduce my workload. J. had been urging me to cut back my workload for some time before I actually did. Of course, I immediately realized I should have cut back much sooner.

The other wise thing this fellow said yesterday is that we can’t live with regrets. Maybe we wished we’d left that job/relationship/hairdresser sooner, but we didn’t, so there’s no point dwelling on that. Might as well just get on with it. Now that’s a great idea if I’ve ever heard one.