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!!
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!!
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.
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!
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.
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!
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.
Yes, this is a photo of my chest. If you look down to the lowest loop of the necklace (made by me, 8mm moss agate beads and tiny black glass beads) you’ll see just above that strand one of my radiation tattoos. No big deal, yes? But when I see it every single time I look down, every time I spill something on myself (which is alarmingly often), every time I look in a mirror, it is a big deal. It smirks at me “Hi, I’m still here, maybe you’ll need me again.” Or it proclaims “Hey! This woman had breast cancer!” Or it snarks “Ha. Thought you wouldn’t think about cancer today, did you? Gotcha. Think about it.”
But, the joke is on the tats.
Two weeks ago I went to visit the office of Dr. Sean Rice, Toronto plastic surgeon, founder and director of Rice Cosmetic Surgery, thanks to a press release issued by Ashworth Associates, and a number of articles and TV news spots on Dr. Rice. In the month of October, Dr. Rice waives his fee, all of it, for removing radiation tattoos from breast cancer treatment.
First, I had to get clearance from my radiation oncologist. No problem. Then I made the appointment and spent ages preparing mentally for a procedure that was not medically necessary (I do not like pain of any kind). I’ll go through the whole experience because it was so short! In the door, greetings from two really lovely—beautiful—women, go to the procedure room, snap a pic of my chest, put on cool glasses, lie down, swab, a whooshing cold rush of air, three electrical zaps, and done. I couldn’t believe it. I originally said I would only get the centre one removed, but it was SO EASY I asked if I could have the second one zapped as well. They use new technology for tattoo removal, a PicoSure laser, which is apparently light-years ahead of the standard equipment. I was Polysporinned and bandaged, and told to keep applying lots of Polysporin and they would scab up and in three or four weeks I would be tattooed no more.
Oh yay!
That’s one more thing crossed off the list of things to do before I go back to work.
I cannot wait to be able to look down and see no reminders of radiation…
I like to think about my breast cancer experience as little possible, and on a good day I succeed. I have many physical reminders of my BC that have nothing to do with the preponderance of pink ribbons and their campaigns:
• my lymphoarm and all the joy it brings me,
• dark ashy hair without a touch of blond,
• aches and pains in my breasts,
• the fact that no bra will ever fit right again (until I get a custom made one with different-sized cups, or wear a prosthesis or padding),
• the suspicion that the lopsidedness is visible to casual onlookers,
• scars on chest/breasts and under my arm, and finally,
• the radiation tattoos.
What I tell myself about each of these points:
• can’t hide the bandages or the sleeve and glove, gonna have them for the rest of my life, so I just have to deal
• thinking that getting some blond highlights back in my hair is a great idea as part of my back to work preparation—just need a whack of cash that I don’t have just now
• can’t take pain pills for that, gonna have them for the rest of my life, so I have to deal
• could have a third breast surgery to reduce the left one, and even though my plastic surgeon is an accomplished anatomical artiste I think I do not want another go-round, so I will just have to deal
• if someone is staring at my chest and discovers one breast is larger than the other, really, what the hell can I do? At present I’m home all day, or running kids around in the car, or going to appointments where I guarantee no one is staring at breasts with anything but a passing or clinical interest, so if that reminder really gets to be too much I will just get fitted for a prosthesis
• I am on my third bottle of Bio Oil in efforts to decrease the appearance of my scars and as long as I keep my arm down and clothing on, the only one that is visible is the one from my port and it’s not so bad now
• the radiation tattoos, particularly the one in the centre of my chest, above almost every neckline I wear, is the one thing I CAN do something about. There is a plastic surgeon here in Toronto who does radiation tattoo removals for free in the month of October (and hopefully shortly thereafter).
I haven’t posted anything this Pinktober about how uncomfortable the entire month of October feels for me. I like to not think about my breast cancer. The longer I can go NOT thinking about my breast cancer, the better. With most of my waking thoughts on my flipping lymphoarm (made up word) I succeeded in not thinking about breast cancer a lot over the last three and a half months, but the arrival of October and the pink ribbons and walks and sponsorships and fundraisers make it impossible to not get slammed in face with breast cancer constantly. Which is the cause of layers of discomfort: I think about breast cancer far more (bad), but all these things raise money for breast cancer (good) but the money goes all over the place and little of it goes to my cancer (triple negative) (bad), but I should be thankful for the awareness it raises (good) even if companies profit off the suffering and potential suffering of patients and family and friends (bad).
Ug. Suffice to to say I’ll be very happy to see Halloween night. We decorated the house tonight in the rain. I’ll post a pic on the 31st.
Two weeks ago I was back at St. Michael’s for a mammogram. My bandaged arm was too big to fit through the armhole of the hospital gown, so I went toga-style with one shoulder covered and the other bare. I sat in the rectangular room, chairs against all four walls, for a few minutes like that and then another patient came over with a second gown and put it around my shoulders. Why didn’t I think of that? What a nice gesture.
Into the scan room, and four uncomfortable squishings later the technician says “Let’s take a look at these,” so I follow her and we look at the scans and she says, “Hhhmm, the radiologist isn’t going to like the look of that one. I’m sorry, but we’re going to have to do another one. I’ll try to be really fast.” “Oh, I’m not in any hurry,” I said, and she responded, “This one will hurt though, so I’ll try to be really, really fast.” My right breast has all the radiated tissue plus the scarring from surgery and biopsies, so I guess it wasn’t clear enough (or she didn’t correct me when I guessed that was the reason for the fifth scan).
And she wasn’t kidding. It hurt so much (sorry to say that, but might as well be honest), that tears literally popped from my eyes and I found it difficult to stay standing. I was gasping and gulping and crying all the way through the goodbyes and good lucks and sorries to the change room, where I stayed for a full five minutes until I could get a grip again. It was the freakiest thing. And it hurt until the next day.
So it’s been two weeks of Pinktober waiting for the results of my mammogram. I feel like I’m right on theme. I am confident there will not be bad news when I see my surgical oncologist, Dr. Jory Simpson, who could definitely play himself in the film version, because if the scans had shown something someone would have called me in before now. My anxiety level is fluctuating between a 1 and an 8, more in the lower end.
I did my bandaging too enthusiastically tonight because I can no longer feel anything but pins and needles. That means it all comes off and I start over again. I hate this. I can’t wait for my sleeve to come in.
Mom (with cancer, twice) blog: It's Because I Said So! 