I finally had my cataract surgery yesterday and the difference of before and after is unbelievable. I went from “no reading, can only see fingers” to 20/20 vision. They’ll do my other eye in a few weeks. Right now I just wear contacts in it.

Having my vision back is a bigger deal than I thought it would be I can now see the ocean waves and all the sea birds out my window clearly and it’s all even more amazing than it was when my vision sucked.

My freedom is back, I can drive again after 4 months of not being able to see enough and it’s just in time for bone scan, CT scan, bloodwork(s), oncology appointments and mom going in for knee surgery all in the next week and a half.

Had my GPO appointment today. She confirmed that the side effects U have are “some people” ones. Diarrhea on my off weeks is normal for some people. Not being able to sleep is normal for some people. I’ll be continuing the sleeping pills for now. When I don’t take them, I literally can’t fall asleep. Fatigue fluctuations are normal for some people. No hand or food issues which is good. I mentioned all the red in my blooswork numbers, including some kidney function. She said the only ones they concern themselves with is my hemoglobin and lymphocytes. Seems odd to me but they’re the proffessionals.

I gotta say, I’m not liking this drug. Not liking the new side effects, not liking having to force myself to eat breakfast then 12 hours later, another “substancial” amoiunt of food to take with the pills. Good thing it’s 2 weeks on the drugs and 1 week off. Hoping I’ll get used to it like I kinda did with the Ibrance/Letrozole.

On top of it all, not being able to see properly really makes me feel like an invalid. It’s great that mom drives me around because I can’t see well enough and we get to spend all that time together, but it’s more than the driving. It’s reading, needing to get my nose almost to the screen to see the words on my computer, crochetting, enjoying my beautiful ocean view. I can’t wait to have all that back.

I have so much going on next month that I’m feeling a little overwhelmed. Cataract surgery, bone scan, CT, bloodwork a couple of times.

Saw the GPO today. I’ve started coughing, sorta in between a smoker’s cough and bronchitis. She’s given me an inhaler and I have to have a chest Xray tomorrow becuase I have a wheeze in one of my lower lung lobes. Think this is the reason I’m off the chemo for an extra week.

She also gave me a sleeping pill prescription. She suggested medical marajiana but couldn’t recommend a dosage. (I’m not into this one at the moment) I can also try Melatonin but she says that’s more for regulating sleep. I’m taking a sleeping pill tomorrow night after I pick up my prescriptions. So tired of being tired all the time.

I was also given a “red letter”. Literally. It’s red. I’m to give it to any doctor I see. It basically says I’m on chemo and what to be aware of, what antibiotics are ok, etc. Guess I should pack that around with me…

Told her I nap just about every day and she said that was good. She said that they’re messing with my body and I should be doing what makes me feel better. She gave me a printout for tips on helping with the metalic taste in my mouth which, oddly enough says if I find something good that I can eat the same thing for days.

….and I have a cataract that was diagnosed in June. It’s now at the point where I can’t really see anything clear out of that eye. They describe it as looking through a fogged up window. Yup. That’s what it’s like. I haven’t been able to drive for about 3 months. My mom is my chauffeur so we’ve spent quite a bit of time together which is a good thing. I finally see a specialist about it next week.

Today was just a heavy day for me. Sometimes I’m just not ok with all of this and today was one of those days. Being exhausted every day doesn’t help.

I’ve finished my 2nd round of Xeloda(Capecidabine). Doing the 7 days off. Bloodwork and oncologist appointment next week. I’m finding it really difficult taking the doses 12 hours apart. Because they need to be taken with food. Not a couple of crackers or a slice of cheese, but a “substantial meal, like a sandwich”. I’ve been forcing myself awake at 7:30am to take the first dose with breakfast. 2nd one I start eating about 7 or 7:30pm. This is the hardest one. Feel like I’m force-feeding myself. I gained 3 lbs on the first round of the drug 😦 About the time I’m going nuts over this force-feeding, I get my week off.

….and I’m not sleeping. I’m taking a pain pill, at the suggestion of the oncologist, before bed and that helps me get to sleep but I don’t stay asleep. She doesn’t want me to take sleeping pills because I won’t feel it if I’m hurting myself or breaking something. I’m awake every hour or so and zombie tired by the time 7:30am rolls around. I’m having to nap almost every day because I just get so tired. Even thoough it’s not right, I get mad at myself because I shouldn’t need to nap. I need work on the “be kind to yourself” thing.

I’m not having any other major side effects so far. That’s a good thing, but getting used to this new drug isn’t easy.

Had my oncology appointment today. They’re happy with everything. I have no signs of hand and foot syndrome(HFS) outside of minor redness on the pads of my hands. They’ve also taken me off the Letrozole. One less pill to take. One less pill known for fatigue.

I’m not sleeping and haven’t been for the past few weeks. I either wake up every hour or I can’t get to sleep at all. Sometimes my leg and foot feel all pins and needlie. Sometimes I’m afraid of breaking something else. Sometimes I just can’t get comfortable. If I lay on my back too long my lower spine hurts. If I lay on my side, my hip ends up hurting. I’ve taken Hydromorphone when I’m in pain at night. Dr suggested I start taking it every night before bed before I try sleeping pills. Sleeping pills can cause constipation which can cause problems with the Xeloda. I so need a few good nights of sleep. Feel like I’m gonna crack soon if I don’t.

A friend said “Not sure which is worse, the cancer or the cure.” I sure wonder that sometimes myself.

I joined MyHealth and was able to see my CT and bone scans. I turned the results into a visual to give me a better understanding of where the cancer is and marked them in red. I don’t know the exact location and sizes of the tumours/lesions but it really helps me understand whats going on and answers a lot of the “why” when I hurt in certain areas or can’t be comfortable for too long in one position.

The report reads in part, “Stable lytic bone lesions are present involving the right scapula, right 4th, 6th and left 9th ribs. Sclerotic metastasis involving the T10 and T8 vertebral bodies are associated with mild T8 vertebral body height loss. Extensive lytic and sclerotic metastasis involving the L2 vertebral body and spinous process, L5, bilateral iliac wings and left acetabulum. Increased density posterior to the L5 vertebral body is suspicious for anterior epidural involvement.

IMPRESSION: There are multifocal mixed lytic(disintegration) and sclerotic(hardening or thickening of the bone) osseous metastasis involving the ribs,thoracolumbar spine and pelvis. Mild pathological fracture of T8.”

A lot of the words escape my understanding but that’s ok. I get the idea.

Mom came with me to the Cancer Clinic today to meet my new GPO. It’s so weird having to cover my medical history and everything all over again, like it’s new. Guess I was spoiled (lucky) to have the same oncologist for 10 years.

I pick up the new drugs tomorrow and start taking them Thursday. I know that Ibrance was a chemo drug, but my dr never referred to it as such. They keep referring to Capecitabine, the new drug, as “chemo” which, for some reason really depresses me, and it comes with new side effects to get used to. We’ll see what those are as I get into the drug regime. Chemo brain is one that sticks out for me. 😦 This drug’s cycle is 2 weeks on, one week off so I’ll be seeing the GPO more often. Every 3 weeks.

Finally found out where my tumours are. The pelvis, in the area of the hip joint. About 6 or 7 vertabrae. Can’t remember which ones exactly, but T8 is one of them, the rib beside it on the left is what was fractured, and I think T5, T8, T9, T10. Also a couple or so of the lumbar spine and my right scapula. It’s a little more than I was expecting but it also answers all the questions about why it’s hard to sit, stand, sleep in one position for too long. I guess heavy lifting is out ~shrug~.

I did get gifts today…LOL They gave me a thermometer and would have given me hand cream and Imodium but I have those already.

Been trying to settle myself since I got home but all I feel right now is “bluh”

My cousin suggested we go to Victoria on Monday instead of early Tuesday. I’m glad she did. What a loooong day!

Met the radiology oncologist at 10:30 on Tuesday. She gave me options which I wasn’t expecting. I could come back and have 8 treatments. Or I could have one. Discussed the pros and cons. The 8 would have a longer effect but for me, it would be expensive and take me out of my comfort zone for far too long. I feel like the one treatment will be enough to get me to where I need to be. I can always go back for more.

She asked me about any other pain besides my hip…oddly enough, my lower back has been really bothering me when I wake up. Sometimes it felt like I wouldn’t be able to get out of bed because the pain was so intense. She nodded, like she expected it. Then the exam, she was able to pinpoint where I “hurt” and one of the places she poked in my hip area just about sent me through the roof. She had booked an hour for me because “usually people have way more questions than you have” but was excited that she had some free time and was going to have a coffee…lol

Had to wait for the CT appointment to set up the radiation points. They used a red marker this time and old tattoos from previous radiation treatment. I think we finally got out of there about noon.

Went for lunch with one of my cousin’s sons. We were talking about pain killers and he gets why I don’t like taking them. They mask the pain so you don’t know when/if you’re healing or not. And we tend to over do it when the pain is masked. I know the doctors are always amazed that I’m not popping more of them.

Back to the clinic at 2:30 for anti nausea meds. There were 3 other women waiting for radiation and funny thing, 2 were from Campbell River and one was from Comox. Finally had radiation at about 3:30 to my hip/pelvis area and my lower back. Then it was the long trip home, stopping a few times so we could eat and I could relieve the hip pain.

Today I’m wiped out. A little stiff and sore, a tiny bit nauseous and basically brain dead.

I have to go for baseline bloodwork on Friday then it’s a meeting with my new GPO on Tuesday. Things are truckin’ along.

I sure hope my family knows how much I appreciate the help they’re giving me. I know I don’t say it enough but I couldn’t do this without their love, help and support.

Talked to my oncologist this morning and it’s as I suspected. The cancer is growing. He say the tumour in my pelvis has grown, my T8 is compressing and he’s afraid it might fracture. There’s some in my ribs. There’s a couple in my lungs they’re still watching. He says my bones are “riddled “ with lesions. Nothing in my head yet, thank goodness. It all explains why I’ve been so tired and in more pain lately. The validation makes me feel better for feeling worse.

Sounds like the radiation scheduled for August 3rd will only be one treatment, for pain management. He says he’s going to text the radiologist to include the T8 and to request only one treatment. It’s too far away for a daily drive and too difficult and expensive to have to stay there longer.

He says that in 3 or 4 months, after I’ve been on Xoleda for a bit, I should feel better and have more energy. I sure hope so. It seems like I’m running out of spoons more often than not lately.

The cancer clinic here has called me twice, letting me know I’m on their radar and they’re just waiting on the oncologist and radiologist for the go ahead to start my Xoleda treatment. Looks like that’ll start the week after radiation.

I’ve gotten past the fear of living with terminal cancer. Now it just really sucks.

The oncologist wasn’t kidding when he said things were going to happen fast.

As with the bone scan, the CT took two tries to get the line in 😦

I feel like I did when I was first diagnosed.

My friend has been visiting this week which is the only bright spot. Like old times with him here to take me to all my appointments. He also gets to see the beautiful place I live. The neighbor fed the eagles with fish parts again this morning. It is awesome to watch the bald eagles feed.