Was supposed to get a phone call from an oncologist today at 10am. 10:30 rolls around and no phone call. My sister was waiting with me and was on a timeline of her own…I said “maybe I wrote it down wrong.” Maybe it’s at 10:30. 10:50 I finally called Victoria. They told me they’d booked me with the “wrong” oncologist. This one only deals with waist down cancer. She said they were in the process of rebooking me. I told her to thank them for calling me and letting me know!!

I’m so angry. Feel like I’m getting lost in the shuffle. I’m feeling like just a number with all the different GPO’s and oncologists I’ve been seeing because none of them is getting to know me. Guess I was spoiled seeing the same oncologist for 8 years before I moved back home. I need to find me an advocate. I know if I try to advocate for myself, I’ll be seen as “too emotional “ if I get upset, and “difficult “ if I ask too many questions and want more information that they see fit to give me.

My bone scan results are ready today too. although there’s “no clear progression “, and “stable uptake”, they still note the new uptake in my sacrum and in my upper C-spine(my neck). Also arthritic-type uptake in the hips and right foot and ankle. No real clue what all this means because there’s no oncologist to decipher it for me! Guess I’ll consider myself stable until told otherwise. Insert big huge sigh here.

Saw the GPO yesterday. Because my fingernails are loosening from their nail beds, I’m considered a “level 3” for side effects. He called it a “residual effect” from the IV chemo I had years ago. I was given the option of 2 weeks on, one week off with a lowered dosage or 1 week on, 1 week off with my current dose. I’m taking the 7/7. I am so not a breakfast person!

I got emotional when I was talking to him. Sometimes I’m just overwhelmed by all this and am just exhausted trying to keep my thoughts positive. I just want to be able to forget. Then I get pissed at myself for being “weak”. He said it’s “completely understandable “ to feel this way, that I’m being constantly reminded of my diagnosis through side effects and appointments and drugs.

I have a bone scan on the 6th and an oncology phone appointment on the 12th. My dosage will be part of the discussion with him.

I’ve decided to take a break from this drug. With my fingernails lifting and the tips of my fingers going numb, to all the other side effects I have, I just need a break. My bloodwork is “stable” and my cancer antigens are still within the 30-50 range where they’ve been for months so I should be ok. Not sure if it’ll be one week or 2 but we’ll see. The GPO also says we can drop the dosage again or change the cycle, one week on, one week off. My appointment next week is in person. I guess they want to see my hands and feet rather than classifying me as a “level two” on my say so.

Also got a call from the Victoria clinic. He saw I’d had a CT and was concerned that no one had gone over the results with me. No problemo. I can interpret them myself. He reminded me that last time my CT was fine but my bone scan showed uptake so we will just see what it shows before I can breathe again. Yet another oncologist will be calling me in July to follow up.

I sometimes wonder how I’m supposed to feel normal when I don’t feel normal….I just feel overwhelmed. Sometimes it’s just all too much.

Saw my results of the CT scan I had on the 3rd. There’s no changes from my scan in March.

Here’s the lowdown on the metastasis that I have.

Right glenoid lytic lesion – right scapula

Depending on how you look at it, it’s all good when there’s no changes. “Stable” as the professionals like to say.

I have encountered a new side effect of Capecitabine. A couple of my nails are lifting off the nail bed. Slightly traumatic for me. It happened with the IV chemo I had so many years ago to. I’ll ask my GPO about it on Tuesday. Right now I’m trying to ignore it….

Every 3 weeks I see a GPO. My last visit (the 10th) was with a new GPO. Again. On top of that, I have no follow up scheduled with an oncologist, any oncologist, in Victoria. My new GPO is looking into that. We both were a little concerned about that and that a CT hadn’t been scheduled when the bone scan was. She ordered one and it’s for June 3rd. Bone scan was already scheduled for July 5th. At least she’s getting things done. It’s disconcerting, feeling like I might fall through the cracks of the system.

She also says I’m “stable”. Which I find weird. Yes, my bloodwork has levelled off and is pretty close to the same as my last tests 3 weeks ago, except for my tumour markers (which are slowly rising) but there’s still the pesky “dye uptake” in my sacrum that says different.

Emotionally I’m still hanging on by my fingernails. Most days missing mom is just part of my life and rolls in with everything else like eating breakfast or brushing my teeth. Once in a while it takes over and overwhelms me like it’s squeezing the life out of my heart. I’m slowly realizing that I’m not going to ever miss her less, just differently as the days go by.

Very rarely do I post about stuff not related to my cancer journey but today is different. Today mom would have been 79.

Saturday we had a Celebration of Life for her. Lots of people, some I haven’t seen for years, lots of hugs and tears.

She was loved by many. I will miss her tremendously. I know she wouldn’t want me to wallow in the sadness and instead be grateful and happy that we got to spend so much time together in the 6 months before she died. Hopefully soon I will be able to do that.

I talked to my new oncologist in Victoria yesterday. It looks like my silent fear of the “breakthrough” tumour in my sacrum is justified. Between that and my lowered dosage of Capecitabine chances are really slim that it’s going to keep working.

My next course of treatment is IV chemo. Because it’s my only option, I’ve put aside my conviction of never having it again and changed it to I’ll try it and see how I can deal with it. It’s my only option at this time. He offered to start me on it now but I’ve nixed that. My mom’s Celebration Of Life is in a couple of weeks and I couldn’t handle throwing some new treatment in the mix. He agreed, “better the devil you know”. The plan is to get my scans done earlier than normal, in 2 1/2 to 3 months instead of 4 and go from there.

How I love side effects says no one. Ever. The oncologist gave me a link to the new drug, Paclitaxel (Taxol) and said the side effects won’t be as bad as the last time I had it because it’s only 1 drug instead of the 2 together that I’d had. The one side effect he mentioned was that I will lose my hair. Again. Great. The one thing that was so devastating to me that I get to do it all over again. Other side effects are your “standard” nausea, bone pain, muscle pain, vomiting, food tasting bad, etc. 😟 Pretty much the same as last time only to a lesser degree.

I got really upset. No mom anymore to talk to. I called my aunt who I’d had dinner with the night before so she knew about my appointment. She came over and spent hours with me and it really helped. I felt so overwhelmed.

Now I’ve got time to put my “big girl” panties on and work on getting used to the idea of IV chemo. yeehaw…..

As expected, my dosage has been lowered by 25%. My feet especially are pealing and splitting around my toes. My hands just get red.

My bloodwork numbers are all ok. There’s no change in my tumour markers. There is “new tracer uptake” in my left and central sacrum (the triangle shaped bone in the middle of my pelvis) meaning I have new METS. All other METS haven’t changed enough to register. Hmmm she calls me stable even though I have a new MET and they have to lower my dosage AND she wants my next appointment to be in person?

The clinic here is going to find out if I’ve been assigned a new oncologist yet. I’m concerned that Cancer agency in Victoria hasn’t called me yet.

Wish my mom was still here. She could always settle my mind after my appointments.

Had my bone scan done yesterday. They did the normal head to toe the an extra scan around my hips because I said they hurt. They always hurt. That’s nothing new.

Had the CT today and I had to wait a few minutes because they had an emergency come in. I have a nice bruise. Again. Talking to the CT tech and she said they like dealing with cancer patients because we’re always kind and pleasant. Even though they would prefer not to see us at all.

I’ll be able to see the results in about a week.

Still no news on a new oncologist…

My oncologist is going on hiatus so my appointment with him on April 7th is cancelled until they can find a replacement for me. My GPO is going on mat leave. I’m at the point where my drug dosage will need to be changed or a new treatment plan is put in place. I don’t feel like this is the best time for this to happen.

I may be stopping my drugs in the next day or 2 at the recommendation of my GPO at our last visit. The skin on the bottoms of my feet in the wrinkles by my toes are starting to crack and them and my hands are sore and red. My fingertips are numb. They feel like the skin is just too small to fit. They’re drying out bad. I’m using the cream. A lot. I think these drugs are finally kicking in with side effects I can’t control.

Today life really sucks. If I’m going for quality over quantity, it’s kinda leaning away from quality right now.