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.

Playing catch-up to chemo N°3

Feb 11. Last day at work, taken as a vacation day, packing and pretending I could actually come home the same day if the keyhole surgery approach worked.

Feb. 12. Surgery. When you’re coming in for surgery, you are actually allowed to have someone accompany you into the hospital. That was a welcome change from two months of solo trips for exams, tests, CT scans, MRIs etc., and seemed only fair since Kate had to get up at 5 a.m. to give me the ride to the hospital. We took advantage of the plus-one bonus, and took it as far as we were allowed—a counter where she handed over my CPAP bag (I was told to bring it “in case”)—and then we turned our masked faces and hugged. It felt right and I needed it. Then we said goodbyes. In what seemed like no time flat I was changed into a gown, IVed, seeing the anesthesiologist, getting a central line put in my neck. I knew in my head there was no way the keyhole surgery would work (major abdominal surgery when I was 17 was going to make it impossible), so my biggest issue that night, after the laparotomy, the big surgery, was pain control, followed by thinking my insides would spill out at any minute (delirium, anyone?). On Valentine’s Day Kate visited (one visitor once per week, and Kate was sweet enough to be mine, even though she was technically spoken for by her boyfriend). This was lunch March 15th, the following day:

so it was definitely time to leave! I went home with pain issues aplenty, but convinced the 41 staples would hold my middle together ;-).

March 4. Pathology report. This appointment, of course, was the most important one in the entire process. What did they find?!?? My surgeon took out everything but the kitchen sink (gotta love that idiom), including sentinel lymph nodes, and the report was good: the tumour was entirely contained within the uterus and cervix, no signs of spread. Clear cell endometrial carcinoma (clear cell represents only 3–6% of endometrial cancers. WTF). Some intense information about markers, and then the fact that both surgical onc and radiation onc were both recommending adjuvant radiation to decrease the risk of local regional and metastatic recurrence, and because of my markers, the PORTEC-3 regimen—radiation, brachytherapy, chemotherapy—starting in three weeks.

March 26. PORTEC-3. This Thursday was a doubleheader: I started chemotherapy and radiation on the same day. My first rodeo, 2014 for triple negative breast cancer, was a straight line of therapies—chemo to shrink tumours, surgery to remove tumours, radiation to blast any remaining cancer. This time, it seemed otherworldly to be doing chemo and radiation simultaneously—how to sort out the side-effects? how to determine which ones take precedence? how to keep putting one foot in front of the other? The answer to that one is easy: have an appointment every freaking workday, Monday to Friday, for radiation for 25 rounds and you have no excuse for not putting one foot in front of the other! You don’t miss radiation. The other way to keep it moving is to have amazing family and friends: my kids, Heidi, Patty, Nik, Kate, Pam, Daryl, Nick, Diana, Kelly, Christine, and so many others I think I will have to do a separate post for them.

March 26. Chemo°1. Cisplatin is a platinum-based chemo drug that is super powerful, necessary, has yucky side effects and is resistance-building. The best thing I could say about it after the first round was that its administration was quick, as in two hours! My 2014 chemos were five or six hours long, so this was easy-peasy. Pre-medicating with steroids and anti-nauseants kept things positive for two days afterward, then I felt like crap for four or five days, but the side effects of radiation had already piled on so heavily that I was just 100 per cent miserable. The radiation was every day, the panic was every day, it sucked.

Me on Chemo°1:

March 31. Fancy meeting you here! After less than a week, down in the radiation basement of the hospital, I saw a longtime friend I had lost contact with years earlier. When I saw this woman from the side, then back, I thought “Wow, that really looks like A——!” She is a very stylish woman, and the floral blouse, pleated black skirt, right down to the shoes, looked like exactly she would wear to class up the radiation area. I didn’t want to to pull a “Hey, is that you?” on a woman receiving radiation, but I did re-seat myself strategically diagonally behind her. You see, at radiation a tech walks out to you right where you are sitting and always addresses you by your name and asks how you are before leading you to your radiation suite. I thought either she’ll be greeted first, I’ll hear her name, and can then jump in and say hello, or she might hear my name and I would certainly speak loudly enough for her to turn her head. Chance saw her greeted first, and I said, “Oh my God!” and it was old home week. We agreed to wait after so we could chat, and it was a huge catch-up! She is in her 12th year of metastatic cancer, still getting in for treatment, still plugging away. It made my heart sing to see her again, and we’ve since met up, called and emailed. How amazing!

April 15. Chemo°2. The baby chemo—as I was referring to Cisplatin because it didn’t take long to get—went haywire on the second round. That afternoon was my second round of chemo and my 15th round of radiation. That night I was over at Tessa’s, and started feeling sick, then sicker and I thought my anti-nausea medication wasn’t working anymore. I went home, tried to eat something because I thought maybe I was hungry and not sick, but felt no better. I eventually looked in the mirror and my forehead and neck were red. I felt my forehead and it was hot. I started having wee shakes and took my temp, but it was only 99.1. Over the next hour and a half it climbed to 100.3, which is when chemo patients are officially having a fever and go to the hospital. By that time I wasn’t just shaking, I was shaking hard and I couldn’t control it so I knew I couldn’t drive myself to hospital and that’s when the control-freak in me really started to worry. Because I was shaking so much Graydon came with me in the Uber there. By the time I got there my fever was 40.2 (mental note: maybe get a new home thermometer) and it was 2 a.m.  It was a terrible reaction to the chemo that afternoon. At the hospital I had three sets of blood work, ECG, chest Xray, saline IVs with various meds added, COVID up-the-nose test, got Tylenol and Advil and the good anti-nauseant plus sleepy gravol, which of course never really got to work in the sleep department because they were in picking and prodding at me every half hour the whole night. They even did bloodwork looking for heart damage. My radiation doc told the attending that I could skip radiation that day. They released me at 10:30, fever down, as red as a steamed lobster and completely bloated with fluids. I Ubered home and slept til 6. Lots of follow-up over the weekend and Monday at Princess Margaret. I have to say I was not unhappy to have had my last Cisplatin.

May 19. Port-a-cath insertion. My chemo nurses had challenges getting my IVs launched, so at their suggestion I asked for a central line, specifically a port-a-cath. I had one for my 2014 chemos, and while it is creepy having a piece of equipment sewn into my chest with a catheter snaking out of it, it is better than worrying and seeing stuff like this, which happened as a result of the actual insertion procedure:

May 27. Chemo N°3. Welcome back to chemo the way I know it, hours and hours long. I don’t know if this will be a regular thing or not, but instead of a chair in a group room or a hallway, this awaited me:

A room of my own, right across from the nursing station, off to the side. No need for earbuds. I felt relieved, since after two two-hour infusions I was wondered what I would do with six hours and no one for company. Tessa was with me for all eight of my other chemos, and it really helped to move the time along when you can talk and visit instead of endure a procedure that seems to be without end.

The new chemo is lots of pre-meds—steroids, antihistamine, histamine receptor antagonist—and then paclitaxel and carboplatin. I brought a laptop and earbuds for Netflix, crocheting for the devil’s workshop, snacks and water, and a change of clothing just in case. The antihistamine gave me 90 minutes or so of happy drowsiness, and then, a visitor!!! My friend A——- was in the building for scans and appointments, first vaccine under her belt, and we thought we’d try a visit in the exterior hallway, but due to a number of factors, my “private” room, our shared treatment schedules, a wonderfully compassionate nurse and supervisor, we were allowed a very chatty visit that ranks right up there with the best mood-altering meds. Chemo N°3 went off without a hitch, port accessed, snacks eaten, 7.5 hours in hospital and NO ADVERSE REACTION like with chemo N°2. So far, so good.

bad reaction | carboplatin | chemotherapy | cisplatin | clear cell carcinoma | endometrial cancer | laparotomy | paclitaxel | pathology report | radiation

A second cancer, really?

To blog or not to blog, that is the question. And that question has been on my mind for weeks when I’ve been feeling so lousy I wished I had breast cancer again, not the new intruder, endometrial cancer. When I blogged about my triple negative breast cancer (TNBC) it was to keep my sanity, make a record of the experience for me and the kids, keep family and friends up to date, and especially to offer support and information to other women who had the triple negative diagnosis. TNBC only had depressing stats and lots of scary “it’s so aggressive if you make it past the three-year mark, consider yourself lucky” type messaging online.

So I did survive TNBC, with a parting gift of lymphedema of the right arm, hand and sometimes trunk, which was a small price to pay. Then early December 2020, Aunt Flo made a visit, a super surprise visit since she hadn’t been around since 2014, when cancer treatment scared her right out of my life.

I knew something was very, very wrong, and went through a hideous Christmas season waiting on ultrasounds and biopsies and results, smack in the middle of COVID-19. The pandemic had such an impact of my three kids who each had health anxiety before COVID that I couldn’t breathe a word of my tests, referrals, diagnosis or further testing until I had a date for my surgery. I had my hands full managing my own anxiety, and couldn’t have managed theirs as well.

So, I told the three of them February 3 that I had this cancer, it couldn’t be staged until after the surgery, and said surgery was in nine days, Feb. 12. I spent Valentine’s Day in hospital, no visitors. The keyhole surgical approach was a washout, and I had the full laparotomy procedure, 41 surgical staples, starting two inches above the bellybutton, then all the way down. My biggest complaint was pain management, which I achieved at the hospital and was then sent home on one-quarter of the dose I was taking in hospital. INSANE.

After six weeks of healing, radiation and chemo began, on the same day. Radiation and chemotherapy began on the same day: I repeat myself just in case that seems surprising. Radiation to this area of the body has side effects that have flattened me physically, emotionally and mentally. Imagine thinking about the bathroom and your proximity to it 24 hours a day. Hideous. And nothing I’m going to discuss here. If you’re visiting this blog because you’re going through this treatment, just leave me a note/comment here, or e-mail me at jacquelynwv@yahoo.com and we can really talk. I’m following a number of endometrial cancer blogs myself, so we can share and commiserate.

Since I have been lower than a snake’s belly for weeks on weeks, hidden out and been incommunicado with very kind and caring family and friends, I am going to blog my way out. Leave a comment or like if you want to, or text or call me when and if the spirit moves you.

I’ll play catch-up as I go along. Here is a glance at my appointments from today this month:

• Friday May 7, 8:30 a.m. (Princess Margaret, brachytherapy) (last radiation, yay!!)

• Monday May 10, 11:30 a.m. (brachytherapy follow-up education)

• Monday May 10, 12:45 p.m. (Mount Sinai, 2-hour gyne-urology referral)

• Wednesday May 12, 11:55 a.m. (PMCC, blood draw)

• Thursday May 13, 10 a.m. (Cancer Rehab and Survivorship Clinic)

• Wednesday May 19, 10:30 a.m. (Toronto Western, for port placement)

• Thursday May 20, 12:55 p.m. (PMCC, blood draw)

• Thursday May 20, 2:15 p.m. (PMCC, see oncologist in clinic)

• Thursday May 27 8:45 a.m. (PMCC, 5–6 hours chemotherapy).

Onward and upward!

Eight-year survivor of triple negative breast cancer!

When I got my diagnosis of triple negative breast cancer (TNBC) in 2013, my doctors told me to stay off the internet because the information on there was dismal. So of course I went there for a while and yes, it was dismal. So, now that I’m eight years down the recovery road with TNBC, I thought it’s about time to pop back in here and say it’s still in remission. Yay!!!

I survived lousy interwebs survival rates for triple negative breast cancer, dose-dense chemotherapy (two weeks apart rather than the usual three weeks apart), tons of side effects, went bald, had breast-conserving bilateral mastectomy, big path report, 25 rounds of radiation, lymphedema of the arm, hand and sometimes, trunk, fatigue, more reconstructive surgery, yadda, yadda, yadda, back to work, super interesting work I might add, my daughter had twin boys, big life stuff, and I am happy to be here!

So if you’ve come to my blog as a TNBC patient/survivor/info seeker, please read on down, or go the the Pages section to the left on this page, and go to the bottom underlined heading, Start here, to see where you really want to start reading.

Out damned spots! or, my tattoos no longer trigger my carcinophobia

IMAG8208

 

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…

 

 

Taking stock of post-cancer-treatment me

Not really.

Not really.

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).

Yay!

Summer-happiness-photo

My scans are clear!

Pinktober, and mammogram results tomorrow

Plastic surgeons have some of the prettiest and goriest websites around. Thank you to Calgary plastic surgeon for this visual (http://markhaugrud.com/procedures/breast-reconstruction/)

Plastic surgeons have some of the prettiest and goriest websites around. Thank you to Calgary plastic surgeon Dr. Haugrud for this very pretty visual (http://markhaugrud.com/procedures/breast-reconstruction/)

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.

Good news about my lymphedema!

After less than two weeks of bandaging, these two areas of the ring finger on my right hand went numb and feeling didn’t come back. I was told to try taking the bandages off for three hours and see what happened. Nothing. Then, I was told to leave them off for eight hours. Nothing. So Dr. Chang, physiatrist with the Cancer Survivorship Centre at Princess Margaret, sent me for a nerve conduction study (a really freaky test I don’t hope to ever need again) that found it was a branch of the digital nerve, no idea why, no treatment, no reason for it to spread, keep going with the bandaging.

I have definitely been in a stall with this blog, and I blame it all on my lymphedema. And the fatigue, but this post is about the arm. For the last three months everything has been about my arm: it hurts, it burns, it feels bloated and heavy, it pinches, my hand cramps, my skin crawls, it’s numb, it’s pins and needles, etc., etc., ad nauseam. It won’t fit in any clothes, I can’t get comfortable at night, my fingertips freeze, bandaging takes forever, I AM NOT NOR EVER WILL BE AN RMT!

Two weeks ago, after almost three months of massaging, exercising, bandaging and Cobanning, I went from 24% to 11% more than the left arm. Even though I was told that 11% was good enough to move back into a sleeve, my thinking was that if I stopped bandaging at 11% and went to a sleeve, which only maintains your size, the next time I would flare it would be in addition to an arm that was already 11% larger than the other. My flare this summer was a 21% increase, so if next summer I increase the same amount, I’d be looking at an arm 32% larger than my unaffected one.

This may be a flawed theory, who knows, but it makes sense to me.

I was so deflated and hopeless and angry after that measuring that I began the most aggressive bandaging and pumping and massaging (deep and surface) I had the entire time. I stared at that arm with such hatred I think it might have shrivelled a little just from the evil eye.

Yesterday I went for measuring at the Survivorship Centre at Princess Margaret again and there I was—6%!!!

That’s good enough for me! I went to my fitter—Mansuetta—and got measured for a new custom sleeve and glove. The thought of putting these bandages into a bag and burying it in my closet has me giddy. Wearing a sleeve and a glove will feel like running naked through a sprinkler on a scorching summer afternoon to me (that’s me as a kid, not now, God forbid).

In four weeks I will have my new gear, just in time for my return to work.  I’m looking at starting a graduated schedule the first week of December. More of that soon.

Celebrating 400 posts: is there a cake in there somewhere?

Thank you to blogger Tracy for this monumental image! http://tracycorrecaminos.blogspot.ca/2012/02/cuatrocientos-seguidores-cuatrocientos.html

Thank you to Spanish, Portuguese or possibly Catalan blogger Tracy for this monumental image! http://tracycorrecaminos.blogspot.ca/2012/02/cuatrocientos-seguidores-cuatrocientos.html

I have reached the milestone of 400 posts on this blog. I started it September 21, 2007 (coincidentally my daughter, Tessa’s, 16th birthday) as the mom blogger for Canadian Living magazine. I was a two-years separated, single—or I much more prefer the term, double—parent with three kids ages 16, 14 and 7. The blog has seen me through the rewards of parenting and the challenge of cancer and lymphedema, and with cancer in my rearview mirror it’s now about the longterm effects of that fight as I get back to work. I can’t say so much about my kids anymore as they all have control over their own social media selves and have varying degrees of approval regarding my posting about them. I’ll have links to Tessa’s latest dancehall videos in a future post if she says OK 😀

And instead of cake, we had Dufflet Pastries sticky toffee puddings for dessert tonight. Oh yes, that’s how to celebrate!