My tumour markers are still climbing. Up 55 points from last month. I don’t think the Fulvestrant injections are working. To make me more anxious about it all, they’ve moved my oncology appointment from March 9th to March 28th.

My scans are at the end of this month so I’ll have a month to interpret them all on my own. I know how to do this but normally someone goes over them with me within a week of having them.

I know our healthcare system is struggling and I know some people have had their cancer treatments postponed because of it. I’m sure hoping I won’t be one of them.

I started this online journal mainly for my mom. Living so far apart, it was a way to keep her informed of my cancer progress honestly. Pulling no punches, but also to keep track for myself. It’s been harder and harder to write in here since she’s been gone, especially knowing that I won’t survive this. But there’s others that follow this so, for you, I’ll try to keep it current once again.

2 days ago I had my 4th dose(one injection in each butt cheek) of Fulvestrant and as usual, the injection sites are sore. The stuff is injected ice cold, slowly, a minimum of 60 seconds, per injection.

Since before Christmas I’ve been dealing with a lot of pain. Mainly in my lower back. It felt like I’d fractured something. Waiting for that to heal, and trying to be careful not to hurt myself more, I fractured a rib. Again. How do I know it’s fractured you ask? Because I’ve cracked it before, at least twice, so I know what it feels like. I have a CT scheduled for the 22nd and a bone scan onto 27th so I’ll know for sure then. My new normal is a notch up in pain.

My therapist/counsellor person has basically dared me to take better care of myself, or rather, letting others take care of me and asking for help when I need it. It’s a big ask of someone like me, but I’ve been working on it. My sister found me a house cleaner who does the floors and vacuuming for me-the things I struggle with. My awesome neighbour takes me to all my appointments because she doesn’t think I should go to them alone. I’m forcing myself to just stop when I get tired instead of trying to “push through” like I used to. There’s no such thing when your body is riddled with tumours. There’s just exhaustion when you push too far.

In June of last year I volunteered for our condo strata council, thinking it would be a nice easy way to give back and be involved. How wrong I was! Our president is just out of control and after many months of sleepless nights and highly stressful situations, I’ve resigned. The knot in my stomach from it is finally starting to go away.

I’m also working at taking care of “end game” things with my sister. We have an appointment with the bank to talk about estate accounts and we’ve had conversations about M.A.I.D. and when to end my treatment etc. I so want her to have as little to deal with as possible when I’m gone. It’s going to hurt enough, no need to drag it out when there’s things that can be taken care of now.

I have a phone appointment with my oncologist on March 9th. Truthfully, I’m not expecting good news because my tumour markers are going up. As much as I plan for these new crappy milestones, they’re still tough to get through.

Ending this on a good note, average life expectancy for someone with my cancer is 3 to 5 years. I’m in year 6 😊

• 3 bone scans
• 3 CT scans
• 6 X-rays
• 15+ blood draws
• 2 injection appointments
• 3 ER visits (broken ankle, pulmonary embolism, UTI)
• Umpteen dr appointments (Med Onc, GPO, GP)

Looking at it this way, it doesn’t seem too bad.

Woke up this morning and went pee like normal. Not like normal, my urine was bright pink. My neighbour and I got to take another trip to the ER. it really helps to have her there, she keeps my mind occupied and my meltdowns are minor. Like she told the Dr, sometimes I’m just sick and tired of being sick and tired and because I’m always in pain, new pains may not show themselves for anything other than the pain I’m used to.

Oddly, I had pain in my lower back last night but turns out it wasn’t pain in my kidneys. And it didn’t hurt to pee. Until tonight. Now it hurts.

Anyways, they did bloodwork and a urinalysis. all tests showed within normal range except 1+ for bacteria, 1+ for protein and some white blood cells. I’m now on antibiotics for the next 7 days.

5 days ago I had my 2nd Fulvestrant injections. I ended up with a huge bruise on only one butt cheek. Odd because I get an injection in each side. The bruise is also on the side without tumours. Makes me wonder if that has anything to do with it.

My CA 15-3 (tumour) markers are up 30 points from last time.

I’m not holding my breath that these injections are working. Oddly, lately I’ve been feeling a sense of urgency. Not sure why or for what, but it’s there, bubbling away in the back of my mind.

One year ago today was one of the worst days of my life. One year ago today my sister and I were hit with the hard fact that my mom was not going to live through the night.

Many people, friends and family, visited mom. All were as shocked as we were how quickly she went downhill.

Today, even though I’ve tried not to, I remember that day vividly and have been reliving it. it hurts as much today as it did one year ago.

One year ago and 7 hours from now (2:30am) mom left us. I so wanted her to be around longer but I’m thankful for the time I had with her.

The memories I have of mom every day are sometimes hard to relive, and sometimes make me laugh but always remind me of how much I was loved.

Had my first injection of Fulvestrant today. It wasn’t too bad. One shot in each butt cheek. The side with the cancer didn’t/doesn’t hurt. The other side is burning, but tolerable. I’ll give it a couple of days to see what side effects I’ll get. I go again in 2 weeks for another does.

This is rather an expensive experiment. I’m one of the lucky ones in that my insurance covers it.

My last appointment with my GPO was 2 days ago. Going forward, I’ll be under the care of my oncologist in Victoria and my GP because he will be the one giving me the Fulvestrant injections. Because of this, I won’t be going to appointments at the cancer clinic again until this treatment fails and if I decide to do IV chemo.

The way it was explained to me, this drug isn’t administered by the BC Cancer agency and the side effects are minimal (haha!) so there’s no need for monitoring from a GPO. Oddly, I have to pick up the drug from my pharmacy and take it to my GP for injection.

She was able to show me my bone scan rather than just reading the report. I wanted to know what part of my foot the tumours are in. The report just says “the left foot “. Turns out it’s most of it from my ankle to my toes ☹️. Serves me right for breaking that ankle. It’s also in a couple of new areas in my pelvis.

We also discussed my longevity or lack there of. She was unable to find any charts or documents to give me an educated guess (not part of her area, that’s a question for the oncologist) but tends to agree with my guess of about 2 years. I’m running out of bones for the cancer to attack. I have an aggressive cancer that does respond to treatment but when it quits responding it takes off like gangbusters. IV chemo would be my last option of slowing the cancer down.

Time to find my new normal.

Got the Covid booster and the flu shot at the same time 2 days ago. That night I had a fever. Real bad. I turned down the heat in my place because I couldn’t stand it. Could feel my body vibrating from the fever. Had a really restless night and about 3 am the fever broke. I was so exhausted yesterday from it. Last night I had one of the best sleeps I’ve had in a very long time.

Also yesterday I called the company supplying the Fulvestrant/Faslodex(why do drugs have so many names?). They did a 3 way call with my insurance and I’m covered at 100%! And there’s no dollar limit. The good news made me cry.

Called my oncologist and left a message that I’m covered so it’s now his turn. He’ll need to supply the prescription and set up the appointments for the injections.

Keeping my fingers crossed that this will hold off my tumour growth for a while.

Talked to my oncologist today. The bone scan shows uptake in all my tumours. Moderate uptake in my hip/pelvis area bones. This could be the cause of some of my hip pain. And some new ones. Degenerative uptake in my left foot. My left ankle was the one I broke. Figures the cancer would sneak in there and take over.

Capecitabine is no longer working but I knew that. He says I can stop taking it because it isn’t working anymore.

He’s given me 2 choices. IV chemo. Which, he says is hard on the heart. I’d be given it once a week. Or Fulvestrant. 2 shots the first month, 1 each month there after. Mainly to hold off doing IV chemo for a bit. No idea for how long, and didn’t ask. Only catch to this one is it’s not covered by the cancer agency. We’ll see if my insurance will cover it. Could be expensive.

Even though I know the progression, and play out all possible scenarios in my head, it still really sucks when it becomes real. And it’s scarier than I could ever imagine. it’ll take me a few days to get used to this “new normal”.