My hair is still falling out. I cut it the other day to just below my ears. Couldn’t take it anymore. Every time I brush it, a whole bunch falls out. Every time I run my fingers through it, a bunch of hair comes out. It gets in my food and my mouth. There’s no stopping it. I refuse to shave it because I’m so pissed off at it. One chemo treatment. Just one and my hair is all going to fall out.

I have ordered a wig. Should be here in about a week and a half, give or take.

I can’t even express how pissed off I am….

My oncologist called yesterday. Unfortunately, as I already knew, but he confirmed, chemo was my last treatment option. He was shocked that my hair is falling out. Said it usually only happens after the 2nd or 3rd treatment. (We all know I’m not your usual person). He really wants me to get the bone biopsy done. I said if he was looking for an answer right then, it would be no. I’ve been through too much trauma in the last month. He’s going to call me in 2 months and I’ll have a decision for him then. Not sure what I’m going to do.

Went to the pain clinic today(palliative care). I’ve been given an anti-nausea prescription that is supposed to help me sleep too and a suggestion to try extra strength Tylenol instead of the hydromorphone. They gave me some links with information on nutrition-my taste buds and appetite suck-and exercise. One of the team also suggested instead of a bucket list, I create a “nectar” list. A record of “momentous moments” in my life that made me who I am. I’m going to do this. They’ll reconnect with me at the end of the month.

A month with no appointments, no tests, no scans, no bloodwork. Nothing cancer related. I feel like I can breathe again.

What a trip.

I was in a lot of pain by the time we got to Victoria. Went to my radiology oncologist appointment yesterday morning. They were concerned about a tumour on my T9 spine. That one doesn’t hurt. Lower down my back hurts and the top of my hip hurts. When I told her that, she said maybe I could come back in 2 weeks to have the T9 done and do the other one “today”. Uh uh. No way am I coming back in 2 weeks. The trip is too hard on me. I said why not do the T9 and just leave the other one, I can deal with the pain. Doesn’t make sense to me. she said she’d check if they could do “both” today. My appointment was at 3:15 but because they had to remap what they were going to radiate, I didn’t get in until 4:30.

They actually gave me 3 big doses. They did T9 down to L3 and 2 doses to my left iliac. I felt the one on my spine pretty much right away. It was like a deep itch.

We went for dinner after and half way through it hit me. My beef dip tasted sour and I felt like my insides were going to blow up.

6:30 I broke down and took a pain pill. 6:45 I started throwing up 😦 . Took a Gravol a little later and threw that up too. Finally fell asleep about 10ish, a good thing because there was nothing left in my stomach. Went for a smoke about 3am then up for good about 7:30am.

I felt relatively good this morning, little to no pain, walking was easy, but half way home the pain kicked in again. Sitting in a car for 3 or 4 hours hurts bad.

I’m glad to be home. I’ve been home for a couple hours and the pain is starting to lessen. hopefully over the next couple of days it’ll settle down.

My hair, on the other hand, is falling out like crazy. Makes me feel angry and sad all at the same time. If it all falls out like it feels it’s gonna do, I’ll never have long hair again.

PS: aunty D. I couldn’t have done it without you. Bumper scrapes and all 🤪

Half way here, my aunt and I stopped at a food court for dinner. There was a couple walking across the court. Both were wearing masks. She was helping him walk, steadying him. He was wearing a baseball cap. Bald underneath it, pale skin, stooped over, taking care as he walked. I was thinking how I knew how he felt. Chemo does a real number on your body. I felt a kinda kinship with this person. The she flipped me the finger. It made me laugh. And made me see how much I do not look like I’m dying from cancer, something that has always been so very important to me.

Had a CT on Friday. They did use the contrast dye which pissed me off since the radiology oncologist said it wasn’t needed. It did only take her one shot at it to get the IV in. My neighbour had taken me to the appointment and between her talking to me and us stopping at my favourite fast food place, I got over it.

This morning I’m brushing my hair before I have a bath and my hair is coming out in clumps. Not the normal haven’t brushed it in two days clumps but my hair is falling out kinda clumps. I quit brushing it. When I squeezed the water out after washing it, more hair came out. 😭 I’m hoping it will just thin out.

Hopefully I won’t have to add wig shopping to my weekend. I’m just so overwhelmed and mentally exhausted by all that happened with the chemo and the radiation coming up. My mom always said that you aren’t given more than you can handle. Sometimes I wonder what my breaking point is.

Victoria called and had me booked in for this Friday, 2 days from now. I told them no. They called back and I have 3 appointments next Friday starting at 11:30, then a CT and radiation at 3:15. They may pop another appointment in there somewhere.

My aunt and I will go down the day before and come home the day after. It’s too far and too painful for me to travel in 1 day. I’m sure I’ll just want to eat and sleep the end of the day of.

Sure wish this was a fun trip instead of being loaded with cancer related stuff. On the good side my aunt and I will be able to spend more time together.

Saw my GPO this morning. They’re “holding” chemo for me for a bit in case I decide to do it again. They can lower the dosage, increase the time between doses and give me a whole whack of different drugs to try and lessen/avoid the pain I get from it. I don’t see me changing my mind without solid guarantees.

Even though she has to push my treatment options, she validated my choices by saying that I’ve “exceeded expectations.” I’ve always wanted to feel like I’ve done what I could to slow cancer down while maintaining a quality of life. I feel content that I’ve done that. I’m at peace with my choice to stop chemo even though it appears to be my last treatment option.

Next week will be busy and mind-filling. For the rest of this week, I’m going to rest and take it easy. I may even decide on some things to do with the rest of my life. For now, just being me, without treatment is enough. I feel like I can breathe again.

I called the clinic this morning and told them I’m not doing chemo anymore. I have an appointment tomorrow morning with my GPO.

Looks like I’m going to Victoria for radiation next week. The radiology oncologist from there wanted me in this Thursday but that’s not enough time for me. One of my aunts is taking me. I apparently have a tumour on my spine that they’re concerned will press against my spinal cord and cause a whole bunch of issues including paralysis. Until I have radiation, if I think I’m having issues such as numbness in my leg or problems urinating, I’m to go emergency.

They’re scheduling a CT to get a recent picture of the tumour before I go to Victoria. The radiology oncologist is also going to book me in with a pain specialist and with my MO.

Palliative called and I’ll meet with them after Victoria. Good this is in the works, bad the GPO involved isn’t one I got along with.

I need to take a breath but apparently that’s not in the cards for me just yet.

So the pain is more localized now, knees, ribs, wrists. I’d take a pain pill but I don’t want to throw up again. It’s almost to the point of being able to ignore it. Almost. Then there’s the fatigue. At least now I can think and function.

My sister and I did have a good talk. I am so thankful she was here. I couldn’t have gone through this on my own. She does think I’m nuts to have even tried chemo knowing how much I was against it. I had to try. She says “Well now you have. No point in trying again.” I agree. 1 appointment or bloodwork day, 1 chemo day and a minimum of 3 bad side effect days does not balance out to a fair number of days a week of living for me. She’s also aware that I don’t want to do a bone biopsy. I’m just so tired of being poked and prodded and scanned.

I’ve been trying to outrun cancer for about 11 years. I need a break. I need some normalcy. I know how aggressive my cancer is, don’t get me wrong, I’m fighting a losing battle no matter what I do and not really knowing how much time I have left, a year, two years, no matter, I’d like to spend it with a little bit of freedom.

Tomorrow will be another busy day. Phone calls from the radiology oncologist and palliative care. I also need to call the clinic and let them know I won’t be doing chemo anymore.

This chemo really hit me. Liquid diarrhea the night of. Tired and red faced the next day and yesterday the pain hit. Big time. I feel like my joints are breaking apart. Today is a little better but I threw up. I’m thinking that’s from the hydromorphone. They’ve always made me a little nauseous. I’m not sleeping properly because I hurt too much. I’m grateful my sister is here so I can just focus on feeling better.

I’m not doing this again. It would be different if there was a payoff for it, but there really isn’t. The pain is not worth it. I can’t outrun cancer anymore. Feel too broken and exhausted.

I never understood until now how people can just give up on treatment but I get it now. I’m not giving up, but allowing myself the freedom to live out the time I have left as normally as possible.

Unless they have something less invasive and debilitating to give me, I’m done with treatment.