Meet my new friend

My new friend is in-home hydration, and I wish we’d met weeks ago!

One of the results of the low residue diet I have been on since my adhesive small bowel obstruction nightmare is that I cannot drink enough to replace fluid loss. On top of that being very uncomfortable, it means I need to be bathroom adjacent 24/7, so my doctor ordered in-home hydration and a nurse to hook me up for four days. I was so dehydrated the first time a nurse came she was unable to find a vein, and on one attempt the IV fluid leaked into the tissue, making this reminder to keep on drinking:

So, we gave up that night, and the next day we used my port, embedded in my chest, as the delivery method for the saline. Which meant remaining accessed for three nights—needle left in the port, taped down—which causes me untold amounts of baseless anxiety.

Whether it’s physiological or psychological or both, this extra hydration has made me feel better the last two days than I have since August 24! I wish it were for longer than four days. If only I could do a training and hook myself up, I would be a much happier camper.

On a totally different topic, if you look at the first photo closely, you’ll see the beginning of my hair regrowth. Yeehaw!!

Chemo N°6 completed!!

Finally, my blood got its act together and my oncologist OKed chemo number six. Instead of it being three weeks after chemo number five, it was actually eight weeks after, so long that my hair started growing back!

It went off without a hitch, no drama, I was close to the washroom, did some crocheting, watched some Housewives, and it was over.

Back when chemos were all on track, I had planned on taking the kids out for a Japanese dinner (or if COVID was still in play, to order in) to celebrate my end of active treatment. But that night, with both legs tightly bandaged up to the hip, and a diet that would have allowed whitefish, chicken, steamed rice and not much else, a night out was the last thing on my mind. Celebrating is a ways down the road, and for now there’s a lot of work to do to mitigate the side effects and late effects of this cancer treatment.

Crappy news #2

This IV is the result of four different nurses trying three times each to launch it.
I was dehydrated beyond belief.

August 25 was a physio appointment and the ultrasound for my legs, but I never made it.

At 5:00 a.m. I woke up, in incredible stomach pain, and then threw up for 11 hours. Then I slept. The next day, everything hurt, which I put down to using so many weird muscles for 11 hours. I couldn’t force myself to eat even a Saltine or toast, and water was by tiny sips only. I had incredibly awful heartburn, asked a doctor friend if Tums were OK to take, he said yes. They didn’t work. The heartburn continued through the night, despite the fact I was sitting bolt upright.

Friday morning I called the cancer nurse line for my clinic and was told to try Pepcid and keep an eye on things. I couldn’t force myself to eat anything, I couldn’t sit, stand or lie down my insides hurt so much. I called my doctor friend to ask if I could take the last really good painkiller from my surgery so I could just lie down for two or three hours with no pain—he asked me a lot of questions and said, “This is not the time to take pills, it is time to go to an ED. Go right now.”

Early Friday night at St. Joe’s emerg, feeling like death. Eight x-rays, ECG, IV, a CT scan and NG tube placement later, I was admitted for a small bowel obstruction. Nothing by mouth. I was there for a week. The NG (nasogastric) tube was looped in my stomach, and pumping out next to nothing. They pulled it and inserted a second one. Having that thick tube shoved up my nose and then down the back of my mouth, down the esophagus to my stomach was hellish! Never want to do that again.

Despite the IV drip of saline plus lots of different medicines, I was starving. In the hospital, visiting restrictions, no TV, no meals to look forward to three times a day, no candy or chocolate gifts when family and friends did come, it was so dead boring. Whenever I drifted off to sleep, I dreamt about food. One night I had an elaborate dream that a nurse had left a steak sandwich on my tray, with a knife and fork as a message to cut it up on very small pieces. She was telling me it was OK to eat something. Most of the dream was me arguing with myself about which nurse left it, whether I should eat it, what the pros and cons were. I had four bites, very dry, which led to fantasizing within the dream as to what sauces and spreads (maybe even sauerkraut) would have been good.

I went six days with no food, five days with no fluids (except for the water I had to drink during the NG tube insertions). I was in the post-surgical unit, and every early morning the surgical squad doc and resident came to check on me. There were more x-rays, a CT scan, and some explanations. I had never known anyone with a bowel obstruction, so was under the impression a bowel obstruction must be the result of wolfing down too many burritos, or some immovable combo of foods. Wrong. It’s from scar tissue, in my case from a huge messy case of burst appendix and subsequent peritonitis when I was 17, plus 27 rounds of radiation to the abdomen and pelvis this year. The scar tissue adheres to other scar tissue, and boom, nothing can go through. So the “nothing by mouth” is to achieve complete bowel rest so the adhesions can go back to where they were. So every time the surgical squad came to visit, it was to see if they could avoid surgery. Surgery just makes more scar tissue. And I don’t want more surgery.

So when this arrived on Tuesday night, I was ecstatic:

And this had me practically dancing:

NG tube out! So I progressed from clear liquids, to opaque liquids, to soft bland diet, to solid diet, no choices or filling out the meal selection sheets or anything, but it was food.

The dietitian came to talk to me about my new low-residue (low fibre) diet, which I swear she said I had to follow for two weeks, then gradually add stuff back. No seeds, no skins, no nuts. Sounds very simple, but the more I read, the more restrictive it is. And it doesn’t sound like I get to add stuff back. I’m seeing my radiation oncologist on Friday, and have a long list of questions ready. For now, it’s white bread, Saltines, yogurt, cheese, peanut butter, chicken, fish, tender meat, only cooked certain vegetables, and cooked soft, no raw veg, no lettuce, berries, apples, no tomatoes, salsa, tortilla chips, and so on. I tortured myself today by watching three Jamie’s 15-Minute Meals shows today—I love them—and there wasn’t a single dish I could make without major substitutions that would kill the point of the food.

Food is very important to me. I’m dreading this appointment on Friday.

This was waiting for me when I got home from hospital:

Faces courtesy of Mika and Aleks.

And these, plus the sunflowers on the front step, and lots of other balloons
on the walls and ceiling, as well as paper garlands,
were courtesy of Tessa!

Crappy news #1

I went to the Lymphedema Clinic at Princess Margaret August 23 to get the swelling in my feet and ankles looked at and rule out lymphedema. I have been having peripheral neuropathy in hands and feet, hand and foot syndrome pain, the summer has been a hot one, I had three kids and had ankle swelling with all three, so I wasn’t worried about lymphedema. I have it in my right arm, hand and trunk as a result of having all my axilla lymph nodes removed back in 2014 with my breast cancer, but this time around I only had two sentinel lymph nodes removed for biopsy.

I will spare you the blow-by-blow account of the examination, measuring and conversation, but all of a sudden I was being told about Coban bandaging, compression garments, compression hose—wait! It’s like you’re talking like I have lymphedema IN MY LEGS!! The therapist looked confused—like I didn’t know I had lymphedema in both legs. I didn’t—I was there to rule OUT lymphedema, not be told how to manage it.

I cried in the appointment, I cried in the car all the way home, I cried more at home. Both legs. I couldn’t comprehend it.

I was scheduled for a doppler ultrasound of both legs two days later to rule out blood clots, then I would have Coban bandaging of both legs, from toes to upper thigh, for six to eight weeks to get rid of as much excess lymph fluid as possible. The bandaging would be done in-home at first by a nurse, then I would go to a community health clinic every three or four days for bandaging.

I couldn’t believe it.

Chemo N°6 still on hold

So, no chemo yesterday. My platelets are still tanked.

They were 70 when I had bloodwork for my sixth chemo. My doc said no, come back next week for repeat bloodwork and we’ll see where you are. Well where I was was 85. I thought “at least I’m going in the right direction” and my doc said “no chemo.”

She said I could wait another two weeks and we’ll check the levels again. I was unhappy, and she said there’s another option—we could just skip the last chemo and I will be finished with treatment. Ha! I was asking her at my last appointment if I could have an additional round of chemotherapy because of these delays, so there’s no way I’m going to cut and run. I want every last bit of the poison prescribed to me.

What can I do to boost my platelets? Nothing. And that adds to my frustration. I cut my finger by accident last week while washing dishes—while washing knives, to be accurate—and it was a little cut that took three days to fully close. That’s an indication of what could happen to my internal organs, so I see why healthy platelet counts are necessary to keep up the chemo. My marrow is tired, from this chemo and radiation, and, as my doc and nurses have pointed out, from my previous chemo and radiation. I found that scary, that seven years later my marrow still carries the damage of my earlier treatment. Ug.

Thorn

So the delay, if my bloodwork is good enough for chemo in two weeks, means I’ll have had six weeks between rounds, not best practice, not on my protocol.

Rose

I am going in on Monday (in two days) to the lymphedema clinic at Princess Margaret to be assessed for lymphedema in my feet, ankles and legs. While the burning, pain, swelling and tightness have been major probs, thinking they will go away when I finish treatment is what has made the situation bearable. When I asked at clinic if there was any chance it was actually lymphedema and not chemo side effects, I got a referral lickety-split.

What’s the rose? That I’ll be getting answers in less than 48 hours!

Roses are red, violets are blue….

These are flowers sent by Kelly, an amazing friend for almost 30 years (holy waaa! such a long time!!). She came to one of my breast cancer chemo days back at St. Mike’s, and we had a great time. This time around, with COVID, vaccines and basically no visitors allowed at the hospital, she has sent me flowers every month, and they have focused my attention on their beauty, colour, scent and reminded me that there are many beautiful things going on around me. It is easy to be mindful when something this gorgeous is right in front of you. And yes, I do move them from room to room to get maximum effect. Thank you Kelly!

Chemo N°6 on hold

So my bloodwork is not good enough to get chemo number six on schedule tomorrow. The big six in the CBC — hemoglobin, white blood cells, red blood cells, hematocrit, lymphocyte, platelets — are all “abnormal,” meaning too low, with platelets especially tanking. I asked if I could have chemo anyway, and my doctor said she’d gone over everything a second time, and no, I would not be getting it. I was also having my last chemo discussion with her, since this was supposed to be my last chemo and the questions were on my notepaper and crowding my brain. I asked if I could possibly have an additional round of chemo because of these delays (I just want any random outlier cancer cells killed) and she said no, that I’m already being treated fairly aggressively. Which is why my blood levels are where they are, and why I’m not bouncing back.

All of which just left me angry and sad and wishing things were turning out differently. So once again, Friday 13th did turn out to be unlucky. I will go back next week for repeat bloodwork and see if next Friday is a go.

To try and balance out my unhappiness and disappointment, I am posting photos from Fleurs de Villes Rosé Toronto, an incredible floral exhibition held in Bloor-Yorkville last week supporting breast cancer. I think there were 38 separate exhibits, ranging from a British telephone box bursting with blossoms to Insta-perfect swings framed by flowers to an exhibit of dogs, all made of roses and orchids. I have tended to stay indoors and away from any- and everyone, but an outdoor exhibit seemed safe, there were plenty of washroom facilities (still a huge concern) and my car was nearby. Thank you to Tessa for convincing me to go!

All of these flowers are alive—so incredible! The “babies” (I know, they’re 3 now) were starting to get tired
Those flowers were lying on the wall behind, and the boys picked them up unbidden and gave them to Mummy — that’s love
And then it was Nana’s turn to get the bouquet!
Yes, all made of orchids. Check out my chemo ankles, and this was the first five minutes of our two hour stroll…

Cross your fingers for better bloodwork next week!

Chemo N°5

Things chugged along from chemotherapy rounds one and two, delivered simultaneously with external radiation, to solo chemo number three. My blood levels went down prior to chemo four—which means the chemo is doing its job of killing cells—but with a modification to the dosage, I got it on schedule.

The day before chemo I went to the blood lab as per usual. Since I had my port inserted, and my blood drawn from there and not my arm, the techs ask whether or not, since I’m having chemo the next day, I want to leave the needle in my port. It just hangs out from my chest, under a bandage, and means I can start chemo without another port access (they hurt a ton more than a needle in the arm). While the thought of sleeping all night with a needle sticking in me creeps me out, not having to do a second port access in as many days sounded good, so I said yes, and I left the blood lab with the needle still in place.

An hour later, I read my own labs on my patient portal as I was waiting to see the nurses, resident and my oncologist. From my experience as mum of a kid with cancer who saw labs daily, weekly and monthly for 30 months, my levels were not better than those for chemo number four but worse. My doctor told me my chemo would have to be delayed to give my blood time to rebound from chemo number four.

Disappointed doesn’t touch how I felt at that news. Angry, terrified, betrayed—way too much emotion with no outlet. My small plan was to get chemo number five on Friday, drive to my brother and sister-in-law’s cottage on Saturday feeling artificially good with the steroids and anti-nauseants, then crash on Monday and spend the rest of the week taking it easy to the sounds of the water and the loons. Being sent home Thursday with no chemo appointment for the next day, feeling betrayed by my body and abandoned by cancer science (why did we not see this coming? can’t I get a white-cell-growth booster like I had with my breast cancer chemo?), and the freaking needle in my chest, well, things were at a new low.

New plan

Proceed to cottage as planned, feeling exhausted but now knowing why. Come back for new labs in 12 days. Levels of platelets came up, so chemo number five happened 14 days later than originally scheduled.

Side effects thus far

Hair: all gone, about one quarter of eyebrows left, thank God they’re blonde because they look weird and I’m too chicken to pluck them.

Intestinal distress: continues, unfortunately.

Peripheral neuropathy: feet, toes and ankles, numb, yet burning, swollen and tight, hurts like hell to walk, prickly feelings, cramps in feet, legs and hands. Could be hand-foot syndrome too, but milder on the hands.

Ankles and lower legs: these have blown up bigger than when I was pregnant. This has led to a referral to the lymphedema clinic later this month. I have lymphedema of my right hand, arm and trunk from my breast cancer treatment, and am dreading that radiation to my surgical site may have caused lymphedema of my legs. Fingers crossed for this to be negative.

Joint pain: lots of it, apart from the trouble with feet and ankles.

Nausea: I got a small extension of the best anti-nauseant, and then pile on the second-tier one plus ginger Gravol. The problem comes when I think I’m past the need for meds and don’t take them, and then I feel sick, and by then the meds don’t work well. So now I’m keeping ahead and taking them regardless.

Energy level: pretty low most days, some days I have almost no activity other than bathroom, kitchen, back door, daybed—no cooking, no cleaning, no crocheting. Other days, I drive with Graydon, Luka, Tessa and babies to grocery stores and little errands. I had a fabulous deck visit with friends-since-uni Shelagh last Saturday, three hours passed like 40 minutes. That was fabulous. Then I slept for the rest of the day!

Chemo brain: really feeling the effects of this, from being unable to retain more than three numbers at a time in my head, to recall of plots, inability to read much of anything, and word recall (SO annoying for me), to forgetting not just passwords but the answers to security questions. I have been locked out of accounts on a daily basis, leading to even more reasons to shut down communications.

Emotional lability: my doctor’s term, something I have been experiencing a lot, and has led me to talk to a psychiatrist at PMCC.

Taste changes: basically over for the cycle by day 7–10.

Chemo No°6

Bloodwork this Thursday, chemo on Friday, that’s the plan.

Chemo N°4

My bloodwork review with my oncologist takes place the day before chemo day. I pop down to the lab, get my blood drawn from my port now, not my arm, and the results are ready within the hour so my doc can say yes, chemo is on! My blood was underperforming on June 17, and she explained to me that my levels were dipping below the levels liked for chemo.

Alarm bells! I want that poison, and I want it on time, every three weeks. She studied my results more, and came back with a trick, to reduce one of the components, paclitaxel (Taxol) by 10%, and then chemo would run as scheduled the next day. Sounded good to me.

Yes, this is me wearing my fave chemo shirt. That day in particular I was having hair, or complete lack thereof, issues, so no head. Very juvenile, I know, but hey, if this crap sandwich isn’t enough of an excuse to be juvenile once in a while, what is?

Chemo N°4 went off without a hitch, 10% lighter on the one component, 6.5 hours, Patty came up from Stratford to drive me there and back—she has been my rock for these chemo days—and then it’s wait for the side effects. Wearing my terribly apropos shirt, of course…

Birthday wishes

My birthday this year was, well, low key. I felt like dirt.

No one could get in the mood.

The Tuesday before I had driven to Stratford to see my mum for a late Mother’s Day visit, and my sister Heidi for an early birthday visit. Tessa and the babies (they’re 3 years 2 months, but still seem like the babies to me) came along.

We met Mum in her backyard, where we sat down to a lunch of chili and uproarious entertainment from the babies. They kept Mum in stitches with neverending stories, chalk drawings of her, bug identification, flower picking and more storytelling.

Oh yeah, hanging out in the backyard with the babies, their mum, her mum and her mum: four generations in attendance!

After an hour, Mum was ready for the indoors and a cup of tea, so we took our leave and headed over to Heidi’s for what turned out to be a private shopping event. A friend of hers owns The Wardrobe, a Stratford institution for the coolest, most creative women’s clothing in town (since 1984!). Because of the lockdown, there was no in-person shopping, so Heidi arranged that I could pick out 10 looks online and her friend would drop them off so I could have a private shopping experience—trying clothes on, showing them off to Heidi, Patty (longtime Stratford friend and number one driver to many of my radiation appointments and all my chemos!), Tessa and the babies (who touched the fabric and said ooooohhh).

Me and the babies, Sasha birthday dress

The clothes were all beautiful—check out the inventory here and you’ll see what I mean. We settled on a Sasha dress in blue from Heidi, and a Penny tunic in aqua from me to me! The freedom of being able to try clothes on at one’s own pace, be the only person in the mirror, be free to try things on again for a second or third look—it felt like I belonged to the rich and famous set.

This is us back at my house, me in the Sasha dress from Heidi. So pretty!

A week later, four days into chemo, I felt like dirt and the birthday vibe just wasn’t there. You can’t will yourself to be happy, and the weight of having to do this whole cancer thing again, and put my kids and family members through it and question mortality and all that, well, it got away from all of us on the 31st. Except my mum, who sent me this email:

Sunday,  May 31st, 19xx was a sunny day in Toronto. I was up all night Saturday. L.Ray kept a record of every cramp. You were born around 7pm.Sunday. My  hibiscus has a big bloom today, for your birthday?? —xoxo

On my birthday I had a lot of texts and emails full of well wishes. I was a punk in the worst sense of the word, and responded to just about none of them. It took days for the rotten effects of the chemo to lift, and by then I felt embarrassed to write back and say sorry, so I just let them sit. Two weeks after my birthday Kate came over, I felt great. She brought me a present, the Los Angeles Times Harry & Meghan: Their American Life magazine. I love this stuff! Back in the day I was one of those people who stayed up all night in order to watch Lady Diana marry that jackass Prince Charles. The magazine has everything—the wedding, their arrival here, the Oprah interview, you name it.

Along with the magazine she gave me a card, a thick card. Upon opening it and seeing the gift cards inside, I was scrambling for the words to ask if Kate had robbed a Shoppers Drugmart gift card stand or won a lottery, but she jumped in and said “this is from more than just me” and went on to explain the cards were from my team members at work! Wow! I had in no way expected that, and it made me feel so valued, and yes, loved. Away from my actual birthday, with no pressure put on me by me, and no chemo crap, I felt happy. So. I had a different kind of birthday this year, with cancer, and lockdown, but with family and friends showing up for me.

I am lucky.

With stores opened up, I went to a sweet little shop on Dundas St. West, in The Junction, Underworld Lingerie (yes, that’s the name of the lingerie factory in Coronation Street, which I’ve been watching on and off since I lived in Oxford in 1986!). I bought this really pretty sunhat there, which has a good-sized black bow at the back, and this very breezy cotton dress with my gift cards, as well as something to do with my hair, which I will post about soon. Make no mistake, my hair is gone from my head, but in a craft project like no other, it has a second life.

Stay tuned!

Vaccination: done and done!

After several months of missteps with PMCC waiting to be vaccinated against COVID-19 (I had my signed letter of Phase 2 high-risk health condition status and 21-day interval and carried it with me everywhere, like a vaccine-wielding good actor might jump out from a pharmacy as I passed), I came back to my workplace.

There were nothing but positive and compassionate vibes at the gym at CAMH for both of my visits, and an optional Hep C while-you-wait test. I am now fully vaccinated, have negative Hep C status, and feel protected in at least one part of my life!

Yes, my hair is super short—it’s disappearing quickly now—and the weird lines pointing up to my right shoulder are the aftermath of my port insertion. They are fading, thank goodness.