Had a consult with the surgeon about putting in a port today. Ya, they called me at noonish for a 2:45 appointment.

I can’t remember word for word but it didn’t sound good. Wasn’t used to or hadn’t much experience with end-stage cancer patients, I could end up with a hematoma, would have to do a CT to see how my clots in my lungs are doing, not sure what taking me off blood thinners would do, what if I still react badly to the chemo making the port pointless….I walked out of there more stressed than I needed to be.

I’ve decided I am not getting the port put in. This all is becoming too much. I feel like I’m doing things now that are making me sicker just to live longer instead of focusing on quality. I’m back to planning my life around my appointments and my treatments instead of just living.

I have decided I’ll try the chemo again but if I have bad side effects or a bad reaction I’ll stop it. Bad enough I’m going to lose my hair I don’t need to struggle with being sick too.

These last two days have been overwhelmingly oppressive. I’ve worked hard at not looking like I’m a cancer patient and worked hard at not acting like a terminal cancer patient. It was and is important to me to live through this with grace and dignity and these last two days have almost derailed all of that. Almost took away my ability to be happy with what I do have. I need to focus on me. I need to turn this into “all about me” instead of doing for everyone else.

….and they’ve let me know palliative care will be calling me Monday.

Took them 3 tries to get the IV in me, my veins kept collapsing. They’ve talked me into a port. As much as I don’t want it, it’s needed.

Got the pre chemo drugs and everything was going good. They started the paclitaxel and I had an allergic reaction to it. I couldn’t breath. Couldn’t get a good breath breath in. Felt like I was going to pass out. It made me panic and scared the crap outta me. They got me fixed up really quickly, shot me full of Benadryl and put me on oxygen. I’m pretty sure it was only minutes but it felt so long. They tried the chemo drug again after I’d settled down and it worked. I’ll have some pre appointment drugs for next week.

Things keep on adding to my “one more thing” pile. It’s really close to being too full to continue with any treatment.

Saw my GPO today and we went over the side effects for paclitaxel. There’s a number of them which is to be expected. I’ll lose my hair so she gave me a prescription for a wig so it’ll be covered by insurance. Bone/muscle pain I’ll probably have because I did last time. Etc, etc. There’s a list of them. We’ll see how I do.

I do chemo once a week for 3 weeks then a week off. I see the GPO on the 4th week. I’ll find out tomorrow how often I’ll nee bloodwork. The nurses are the ones that look at the reports to know if I should continue with chemo.

She is going to refer me to palliative care. Says it’s best to start the process now, to get used to it and the others involved, before I do need it.

I know I’m still relatively healthy and with chemo most likely being my last shot at treatment, I feel like I can’t give up yet….and like the GPO says, when my body decides to respond to treatment it does it really well.

Am I scared? Naaa. I’m terrified but I’ll just keep putting one foot in front of the other until I can’t.

The day after my oncologist called, the cancer clinic here called. My first IV chemotherapy appointment is April 12th. I see the GPO the day before. I will be getting chemo once a week.

I’m still working on processing it. I’m devastated that I’m going to lose my hair. Again. I’m worrying over the other “possible” side effects too. Of all the horrible things I’ve had to go through in this life, chemo is the one that I can still feel like I did then. It’s horrid, scary deadly stuff. I often wondered if I was ever going to come out the other side with any resemblance of what feeling “normal” was like. With any luck, I’ll be able to tolerate it better this time.

My sister was here and brought some pink hair dye. We put a streak of pink in her hair (“For my sister!” She said with a big smile on her face.) Today I put a whole bunch of pink streaks in mine. What the hell, if I’m going to lose it I may as well have fun with it while I can.

This all just really sucks.

Talked with my oncologist today and as I suspected, the Fulvestrant isn’t working. No more injections to the butt.

He’s setting me up for chemo in the next couple of weeks. He’s also setting me up for a bone biopsy to get a clearer picture of the type of cancer I have. I’ve never had a biopsy for the metastatic diagnosis. There’s a chance I can skip the chemo and try a new drug that is “showing promise “, but it depends on the HER2. He was going to schedule me for radiation but I said I didn’t need it. At this point my pain is manageable. He’s still going to get a radiologist to look at my scans.

The chemo would be weekly (paclitaxel?) aaaaand I get to lose my hair. Again. To me that is still the worst of all the side effects. I make a huge effort to not look like I have cancer. This won’t help. And I donated my wig when my hair grew back the first time I had chemo.

I may not be looking forward to the chemo but the biopsy scares the beejeepers out of me.

I asked about my longevity and after a bit of back and forth and me explaining that I can pull from my life insurance if I’m within a 24 month window. “That’s fair” he said. “24 months is a fair assumption.”

Why is it that treatment used to stop/diminish something that is trying to kill me has to hurt the rest of me and slowly makes me feel worse? When will they come up with something that works like an antibiotic where you slowly feel better?

Woke up Saturday with a bladder infection. Called a pharmacist to see if they could give me something for it. Nope. Picked up good old cranberry juice. It helped but didn’t get rid of it. Called my dr this morning and he’s away until Friday so off to Emergency I go. Again.

ER visit took only 45 minutes instead of the usual 4 hours! I’m on antibiotics for the next 3 days.

I have a phone appointment with my oncologist tomorrow afternoon so am going to bring this up. Having 2 UTI’s in the last 3 months is not a coincidence since the last time I had one was forever ago….20 to 30 years at least. I’m pretty sure the Fulvestrant is causing them.

Was able to finally see my bone scan results while waiting for my dr to get my injections. It’s not good.

I’ve never seen the words “increased in geographic size and intensity” before but was expecting this. Those areas of my body have just been feeling different, hurting easier, and making me feel more uncomfortable. What surprised me was the right tibia. I wish they showed measurements for me to compare.

My dr asked if I still wanted the injections. When I asked his opinion, he agreed that they don’t appear to be working but was hesitant to stop them without my oncologist’s says so. so I had them. My right butt cheek is burning!

My neighbour took me and on the way home she kept telling me to be positive. I’m beginning to think people say that out of fear. Thinking realistically is too scary.

Now to wait for bloodwork and CT results on Tuesday.

Will be interesting to see what my oncologist says….

I went for my CT scan this morning. I was more stressed than usual ‘cause it was snowing. The tech tried to get the IV in and couldn’t. She only tried once. She didn’t want to keep poking me because of the trauma already caused by the bone scan injection. They take me down to Cancer Care hoping they have better luck.

Cancer Care has one of those handy dandy scanners that turn your veins neon. It appears I don’t have any 😦 She was able to finally find a vein on my arm, between my wrist and elbow. In goes the needle. As soon as she tried to flush with saline, my vein collapsed. She finds another vein. Same thing happens.

Knowing my veins suck, knowing I have scar tissue in a couple of them, knowing it’s not going to be any “easy” appointment and having a needle phobia, fighting the flight response is incredibly difficult. I was so stressed I was crying by the time they gave up. My arm is all bruised. People who say needles don’t hurt are just wrong. They do.

CT scan done without contrast. Not ideal, some things won’t show up but better than nothing. Apparently there’s a way to get the IV in using ultrasound and done by the radiologist but they need to be told when the appointment is booked. I’ll talk to my oncologist about it.

And more needles. Thursday I go for my injections. Monday I go for bloodwork. Each time a needle poke fails, my phobia ratchets up.

Had yet another bone scan yesterday. They’d moved my appointment ahead a day, siting shortage of techs so I had to be up at 5:45am to make the 7:45am appointment. I’m not a fan of mornings or driving for 35 minutes that early or driving in the dark.

Naturally, it took them two attempts to give me the injection. Bone scans used to be the easiest of all the scans and tests I have to do. Now they’re starting to kick in my anxiety as much as CT’s and bloodwork. It seems the more of all this stuff we do to keep track of the cancer growth, the higher my anxiety gets and the more I have to fight the flight response. Don’t even get me started on having to wait a week before I can see the results!

There is good news today. It may not be in time for me but it’s going to help a lot of other people. $440 million will go a long way toward helping BC cancer patients. https://news.gov.bc.ca/releases/2023HLTH0012-000229

I’ve always liked being alone. I’d get home from work on Friday, lock the door behind me and not come out again until Monday if I could help it. I preferred it that way. Being an introvert in an extrovert job took a lot out of me and I would need time to recharge myself.

When I had to quit work because of my diagnosis, the extra time to myself was definitely needed so I could focus more on my treatments and my health. I was and am still not lonely.

Lately, I’ve been anxious spending my nights alone. The other night I had a dizzy spell. I ended up calling my neighbour and she came over for about an hour with her blood pressure cuff 🙂 My blood pressure was fine and it turns out, dizziness is a side effect of the injections. I’ve told my neighbour I need a babysitter:(

Still…nights are really hard lately. I’m not lonely, I don’t want or need someone here to keep up a running dialogue with me. I just don’t want to be alone. I have anxiety attacks more at night. Not the debilitating kind, just slight nudges that take over your mind for a minute or two. I just feel I need(or want) someone here at night. Not sure how to remedy this new “thing” yet, but one of my mom’s favourite sayings was “It’ll all work out.” So I’m holding her to it.