The post I never thought I’d write

I have scrapped seven drafts of this post. It is giving me so much trouble. I thought if I gave myself time things would settle, my mind would clear, and the post would write itself as it usually does.

I want to be gentle, thoughtful of others’ triggers and feelings, and make the news easy to digest. But this is hard. So I plunge right in: my endometrial cancer has returned, just 3.5 months after my last treatment. It is in the abdominal space now, in several forms—a 4 cm tumour, caking on the omentum, a lesion on the liver. It’s been very busy in less than two months. It’s at Stage IV. There is no cure. The average survival is two years. I am receiving palliative care at the moment, which, as far as I can get from my doctors, is all the treatment that I can be offered now.

Palliative care is chemo, Taxol in this case, once a week for six or seven rounds. The hope is that chemo will stop the growth of the tumours, not actually shrink them. I have definitely felt better on the chemo than without it, whether that’s real or my brain believing it is working. A CT scan will tell the truth.

This news has torn my kids apart. We were a house of tears for several weeks, unable to decide whether to cry where you are when overwhelmed, or be tidy and cry in your room or in the laundry or in the workshop. I will give my kids complete privacy here, and just say that each of them has their own way of coping with the news that their mum might not see them find a partner, have kids, graduate or won’t be around for motherly counsel, funny reels sent at 2 a.m. and fancy sugar cookies. I have cried with two of the kids, not with one of them. That will come later. I have cried alone just about everywhere. If I still cry almost every time I talk about it, does that mean I’m still processing? Can you process for two solid years?

GETTING TO THIS POINT

I had a complete abdominal hysterectomy and bilateral salpingo-oophorectomy, left and right ureterolysis, omentectomy, and bilateral sentinel lymph node biopsy February 12, 2021. The pathology report said the tumour was completely contained within the uterus and cervix with no signs of spread to any other surrounding sites. I couldn’t have asked for a better report! I then went through 25 rounds of radiation and chemo simultaneously, 2 rounds of brachytherapy [internal radiation] and a further 6 rounds of chemo after radiation. After my last chemo, I had a “new normal” baseline CT scan taken November 5, which was pristine clean.

Thanks to radiation, the surgery, and extensive abdominal surgery when I was 17, I had a partial bowel obstruction in August 2021, for which I went to St. Joe’s, got five x-rays, and they kept me for a week. I had a false alarm in October, still got five x-rays. A false alarm in November, five more x-rays. On January 5 I had the string of symptoms that meant I had to go to hospital—feeling nauseated, fever, vomiting and so I called a Lyft and off I went. This time however they ordered a CT scan. I was a bit surprised, but no worries.

Instead of the doc who ordered the test coming back to tell me the results, a serious surgeon came to talk to me. The very grave look in her eyes seemed out of place for a standard bowel obstruction. She delivered the news of the obstruction, and then said, “But the radiologist found more on the scan. A 4-cm tumour, caking of the omentum…” My ears were roaring at this point. I asked her if she could pull up the two-month-old CT, the one that was called super-clean and pristine, so we could look at both. No, that wasn’t possible. She was very kind, and asked if there was anyone I wanted to calI. At 1:30 in the morning, I thought I would just think on it myself. I asked her how it could have returned so fast and be so invasive? She said very quietly something like, “I always think of it as milkweed seeds, you know, how they float around….”

I was visited every morning by super-nice and empathetic surgeons who explained they were not oncologists, and that as soon as we cleared the obstruction, I should head to my oncologist. One doc arranged for a day pass for me to leave St. Joe’s on January 10 to attend an appointment with my oncology surgeon. That appointment was asked for by me, because early in December I called my cancer nurse and reported, “I had no pain on a daily basis for the first three months, now I have tons of pain. It feels like I did 10 times the rope-climbing and sit-ups that I was supposed to. Like I’m working out like crazy, but I am not. Anything that involves the core—standing up, reaching, straightening up, getting out of or into bed, coughing, sneezing, deep breaths—hella hurts. My nurse sent a note to my onc, who has booked me in to see her early next week. Here’s hoping it’s nothing.“

HA! HOPING IT WAS NOTHING DIDN’T WORK!

So, I’ve had four chemos already, with I think three or four more for this cycle. Then another round and a scan to reveal if anything has slowed or stopped. I’ve read that only about 30% of patients respond to the first chemo, but I have historically done well with Taxol, so I am counting on that. If there’s no change, we continue. If, God forbid, there is growth, then we switch chemos and try again. Then immunotherapy, which may or may not be covered by OHIP (WTF?!?!?!?). Unfortunately, there are no clinical trials being held in Canada or the States that I can join. I am game to try for some second opinions from American hospitals. I’m researching all the time. Hospitals in Europe will do surgery on my type of cancer, but we’re talking money I do not have access to.

When I had triple negative breast cancer, I knew I would survive, even though being metastatic the odds were not good. I just had a feeling, and so I did everything I could. When I had the endometrial cancer, I was equally convinced I would come out clean, bolstered by my path report in March, the Stage II status, and my pristine CT scan of November 5.

This Stage IV, no cure, two-year prognosis, palliative care situation is crap. So I will be doing anything and everything I can to stay here with my kids, grandkids, family and friends as long as I can.

If you have any questions, ask away, either in the Comments section below, or at itsbecauseisaidso@yahoo.com, or by text. Don’t be surprised if it takes a while for me to respond because like everyone, I have good days and bad. 😉

And Just Like That…

I’m back in the hospital (please excuse cheap use of SATC reboot!).

Somewhere in the previous post I wrote about weird new pains I’ve had for the last month, and how I’m seeing my oncologist next week. Well, I found the source of something, and it’s another bowel obstruction.

This one started like the first one, and the subsequent false alarms: feeling nauseated, intestinal pains, then throwing up. So I came to the hospital at noon, through triage by 1, exam by doc by 2:30ish, IV saline, Zofran and morphine, CT scan with contrast by 6, admitted around 8, NG tube war at 9, in room by 1 a.m.

It felt very speedy this time.

So here I am, IVs running, NG tube draining God awful crap out of my stomach, five or six shots per day, and x-rays to check tube positioning. Wearing my four-braces-per-leg nighttime wear for the lymphedema. Waiting for my intestines to completely relax and fall back and let the good times roll! To achieve that, no food, no drink, no ice. No visitors. I have laptop, phone and hospital TV with almost every channel mis-identified.

This took seven days the first time. I’m banking on getting out in time to see my onc at 10:15 Monday morning. That would be five days. Please cross your fingers!!

Ringing in the New Year: Taking stock

This is what Coban bandaging looks like. I was wrapped by nurses every three to four days for 14 weeks to take down the swelling of unchecked lymphadema in both legs

I don’t know a single person who would say that 2021 was a great year. It was a cruddy year for me.

Let’s see, COVID, a second cancer diagnosis, this one during a pandemic, which meant going to every appointment, exam, CT scan, chemo and radiation treatment alone, a total abdominal hysterectomy and bilateral salpingo-oophorectomy, left uterolysis, right uterolysis, omentectomy and bilateral sentinel lymph node biopsy, chemo and radiation side effects, and now late effects that include an increased risk for bowel obstructions forever, a lifelong restrictive diet, chronic lymphedema in both legs, chronic diarrhea, my Mum’s stroke, advanced dementia diagnosis, and placement in a long-term care home. Wow.

I’m making no jokes about how 2022 couldn’t be worse, because we all know it could be.

Updates since September 27

Things are progressing slowly…

IV hydration. The four days worth of IV fluids turned into 18 days, and I was thankful for every one of them. it made me feel more normal and less sickly.

Mental health. My mental health took a beating—second cancer, physical fatigue, my blood tanking, chemo fog, bandaging, the thought of three of my four limbs now affected by lymphedema—so writing a post was the furthest thing from my mind. I felt sad, heavy in my heart, content to lie in my bed with my legs elevated and my hands folded over where my uterus used to be. No TV, no podcasts, no scrolling, just waiting and hoping to fall asleep.

I have a wonderful therapist at Princess Margaret, clinician-scientist Dr. Madeline Li. She has a three-pronged approach: physical (bloodwork showed extremely low B12, I took a supplement for two months, levels actually went down, so now weekly B12 shots, leading to monthly. Low B12 is associated with depression, and preventing anti-depressants from being effective); pharmaceutical (I started on an SNRI that alleviated pain from my peripheral neuropathy and lessened mood swings. Now we have added an SSRI to work on the depression itself); and talk therapy. She is so very supportive.

Chemo brain. My mood swings, or as I call them, mood spikes, and emotional extremes were very much out of character for me. Sadness was easy to understand, but I would get such rushes of frustration and anger I was shocked. When I went back and took an inventory of my anger, I found that almost all anger stemmed from when my brain wouldn’t work. I had chemo brain with my breast cancer, read all about it, took a seminar or two on it, and it basically went away as I got better.

This time it has been different, and my reaction to it has been different. I’m seven years older now, and my mum has dementia, so I am hypersensitized to comments like: “Oh, don’t worry! I never know where I put my keys!” or “Some days I can’t remember my own name” or “We’re all getting older, face it.” I have never had to write down a six-digit verification code to remember it, now I can barely hold a four-digit number in my head. I have watched my hand pour boiling water into a coffee filter over a dirty glass, dog food into bowl in the sink, spray clorox onto the plant sitting on the kitchen table. I can’t find words I need and the length of silence while I search drives all of us nuts. I lose plot threads in popular shows (Luka and I have worked our way through all 120 episodes of Psych, and I had to go back and rewatch some to understand what was going on, and this is not a complex show. Some episodes I just had to give up). I would get so frustrated, angry, then desperate, then hopeless.

I spoke to Dr. Lori Bernstein, clinical neuropsychologist with the Cancer Rehabilitation and Survivorship Program. She helped me sort out which of my cognitive problems are common with chemo brain, which are stress-related and which are not signs of early dementia. She talked about self-directed neuroplasticity, how to be more forgiving to myself, to not beat myself up when my brain screwed up. That is a tall order, but I’ve been trying and sometimes succeeding. For example, rather than remain silent while I grasp for the right word, I now search out loud, which shows others I’m still searching, and maybe will get me some help.

Leg lymphedema. In the second week of December the stars aligned to get me my daytime and nighttime garments (I had to go to two different doctors, two different physiotherapists and two different fitters) so I could stop the toe-to-hip bandaging on both legs. The 14 weeks of bandaging did their work: I saw my ankle bones for the first time since the summer began. I now have insanely hard-to-get-on tights — putting them on takes 30 minutes on a bad day, 20 minutes on a good one, I’m bathed in sweat by the end of the struggle, my heart rate elevated by 40 bpm — for daywear and nighttime velcro braces, four sections per leg. My legs are now like my right arm and hand, trapped in compression for 23.3 hours a day. I have yet to have a manual lymphatic drainage massage because I’m just not proficient enough at getting the tights on to try and do it in an office setting (I use a very low footstool and the side of my bed frame to give me support at various stages) after I’ve been up and moving around. Goals AF! MLD massage by the end of January.

Gastrointestinal. I am still frigging around with different laxatives to find a combo and schedule that will work. When I think I may have one, two days later it fails. The very restrictive low-residue diet winds its ugly way around, made more difficult now because the dietitian pointed out some days I was only taking in 20 grams of protein, when I need to take in between 80 and 100 PER DAY. Holy waaa! That is close to impossible. My pelvic floor therapy has been on hold. It should pick up in January. So now I keep daily logs of my fibre and protein and fluid intake. I still require 24/7 bathroom adjacency, and that’s where those details end. I had no pain on a daily basis for the first three months, now I have tons of pain. It feels like I did 10 times the rope-climbing and sit-ups that I was supposed to. Like I’m working out like crazy, but I am not. Anything that involves the core—standing up, reaching, straightening up, getting out of or into bed, coughing, sneezing, deep breaths—hella hurts. My nurse sent a note to my onc, who has booked me in to see her early next week. Here’s hoping it’s nothing.

It’s all about the hair. I think the only people who can identify with cancer hair loss are people who’ve had it happen. I was super worried that the delay of my last chemo would screw up my regrowth. My hair was all coming back in when I had the last chemo, then all the regrowth fell out, sending me back to shiny bald. Three months on, I have a half-inch of hair. I was staring at it in the mirror one day and saw a weird pattern in the growth. It corresponds to the straps on my CPAP mask—where the straps go from ear to ear over the head and behind the head. The hair is sparser and shorter under the straps, because I use my CPAP religiously. I love it. My sleep with the CPAP is like Hypnos and his sons are my sleep valets. What to do? Hair wins, so I’m one night on CPAP, three nights off, until I can’t see the difference.

That’s it for now. Bye!

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.