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. 😉

4 Responses

  1. I love you. In moments where taking care of you should be your only priority, you are still prioritizing how to care for us while you deliver this news. Selfless, compassionate, loving…these words don’t even scratch the surface of how to describe the person you are.

  2. Wow after all you’ve been through this is certainly not good news. You’ve also been so positive all the time while going thru this hell that I think you should try to maintain it as it just might work. This is so sad to read after so much treatment but I still feel positive for you. Take care and I’ll send positive thoughts and prayers your way 💕🙏💕🙏

  3. Just want you to know that I am sending you all my love ❤

  4. Sent you an email.

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