87. Be aware but don't despair

Results from the CT scan showed a thickening of the left clavicle and a lesion/bone growth at the spot nearest my throat. Also some issues to the right lung area but these are probably post surgery and radiation injuries. The report called these radiation fibrosis. These results triggered the PET scan.  I had this a week after my CT scan.  I saw my oncologist a week ago for the results of both scans.  My lymph nodes were clear so that is good news. My clavicle did some uptake of the dye they gave me which made a hot spot, but not quite hot enough to make my oncologist order a bone biopsy, yet. She said she didn’t want to put me through a painful procedure when there isn’t a full definitive spot to get material from and it would probably come back inconclusive at this point.  A follow up PET scan in 3 months. 

She showed me what the pictures looked like. Very cool. I asked her about Felicity (lump under left rib cage which was diagnosed as a lipoma last year after an ultrasound) and the lumps on the top of my thighs in the muscle bits. Nothing showed taking up the dye in those areas so she said not to worry about them at this stage. The dye is food for cancer so it gobbles it up and makes bright colours on the scan. Blue is good. My clavicle was a green, almost heading into the orange at one section. Red is bad. That’s a major hot spot. I’d had a CT scan at the end of Feb last year and the Dr said the issues found on this one were not present then. They also noted how my clavicle was much higher up and out of place compared to the right side. 

My oncologist was not quite convinced with the report saying possible degenerative in nature, as in arthritis, after looking at the scans and called them up to talk some more about it. Osteoarthritis is wear and tear and I haven’t injured that area, I know, shocking with all my crazy injuries.  (Side note, I was sewing the other night and when I pulled the thread through my cloth and up and out to my right side I scraped the needle across my right cheek.  I know, how the heck did I do that?!?!  Now I have a thin red line about 4cm long and a very light scab on my cheek). Rheumatoid arthritis is an autoimmune disease.  My oncologist called me in the afternoon when I was home to say that to investigate the arthritis idea further she is ordering me an MRI. That will

be this Friday at 8.15pm. Yes, evening. Better than 8.15am in my book. 

I asked about the red lump sore bit on my left lower shin area and she wasn’t too concerned about it. Just keep an eye on it and if it goes nuts then head to the dr. The red marks that have appeared under my scar on my right chest she squinted and frowned at while stroking it for a while.  I admit to thinking that the frowning and stroking went on for a bit tooooo long for it to be just a cursory look.  It doesn’t hurt, it doesn’t itch. It’s slightly raised and it wasn’t there 2 weeks ago. She said to take a picture with a ruler next to it and again, keep an eye on it. Apparently breast cancer can metastasise to the skin.  If you don’t like medical stuff I wouldn’t recommend googling images of that. She says doing a biopsy on the skin is very simple and not that painful so if it is still there when I see her next time she will probably send me through for that.  Just to make sure what is actually happening.  Better to get answers for things quickly.

Another thing I mentioned to my oncologist was that within the last week before I get my zoladex injections I get a bit of an ache in my lower back, also some cramping like I’m getting my period and last week I actually felt like I had started bleeding.  She ordered me a blood test to check my hormone levels.  Sometimes the zoladex and hormone meds don’t work as well as they should.  She called it ‘breakthrough’.  If my blood test shows higher levels than she would like then we will revisit the idea of having my ovaries out.  My cancer was 90% oestrogen a d 10% progesterone positive.  That is the food that makes my cancer grow.  The medications I am on is limiting the food to stop the cancer coming back.  If it isn’t working properly then it’s a higher chance or reoccurrence.  The ovaries are the main place for oestrogen to be made so if they are taken out then that takes away a lot of the food.  I am seeing her again on July 19th and we will discuss all the results again, including blood test and MRI results.  She says she might want to put me on the list for ovaries to be removed anyway as it is better to be on the list and if she needs to call and bump me up the list it’s better than just barging in without being on it.  This is the public hospital list for medicare to pay for the surgery.  There is also a higher risk of ovarian cancer if you have had breast cancer so it can get rid of that worry too.  My oncologist wants to know all my lumps, bumps, sore bits, weird skin colours and anything else I think is out of the ordinary.  She wants me to “be aware but not despair”.  Right, lets see how easy that is.  

I wrote the above 4 days ago. I had the MRI last night. Same place as where I had my knee done. I’d taken off any metal I was wearing before I went (gold earring, silver ring and silver bangle) and made sure I didn’t have metal on my clothes. Bonus about not having boobs and not having a bra means I didn’t have to get into their gowns I could just stay in my clothes. I had a jumper on cos it’s cold at nights so I took it off and I am glad I did. I now have issues regulating my body temperature so sometimes I’m freezing and other times boiling. It doesn’t tend to matter what the actual temperature is either. My feet get cold now and my toes are still numb so I either don’t know they are cold or they ache like crazy because they are cold. So I wear socks and shoes a lot more than I ever have done. Weird I know!!  

I laid down on my back for the MRI. My left shoulder was pushed up into a hard plastic half circle thing that was attached to the bed. Another flat A3 sized contraption was placed on my chest. The technician put a rolled towel on the right side of my throat and a sand bag on the left side of this thing to stop it sliding up my chin and hitting my nose. The bed then moved into the machine. It’s very cosy inside those machines. Not much room at all.  Good thing I am not scared of tight spaces. He put a buzzer thing in my left hand so I can press it if I need anything. 

He said it would take about 30-35 mins. It’s not a usual scan for them to do so he hadn’t done one for a while. I had ear plugs in and then headphones. Last time I was played songs but this time nothing. Maybe because my head was inside the machine and last time it was just my knee. Loud noises, different tones. High, low, fast and slow. Sometimes different sounds at the same time. Sometimes the bed moved a bit up and down. After a while there was a really deep vibrating sound and it was like a light concussive massage on my back.  Felt rather nice until I felt the sandbag slipping down towards my left arm and then the flat thing started to shift up my chin, over my lips and almost touching my nose. The sounds stopped and I pressed the buzzer. The guy said it was the last one and I was glad!!  Each time the machine made noise it got really hot inside. My body also heated up, like I could feel the energy waves or magnets or what it is going through me. It’s wasn’t unpleasant….but borderline. 

I saw the dietitian yesterday  after my CT and especially the PET scan where I had to fast I’ve been having more gut issues. Some more diarrhoea episodes not as bad as after the zoledronic acid infusion but enough to make life much more annoying. I’ve also been feeling nauseous a lot more and have lost a lot of interest in food. I have to make myself eat and that isn’t fun either. I haven’t done much cooking or experimenting with cooking the last few weeks. So the dietitian was saying that every time I have an injection and the medication I’m on is fighting with my gut bacteria and there is a big war going on.  Stress also is bad for the gut. When I have a diarrhoea attack she says it’s like my insides have been washed out with sulphuric acid and all the bacteria, good and bad are decimated. She says to avoid onion, garlic, apples, pears, coffee, breath mints (the last two I don’t have anyway) when I’m feeling icky as they can make diarrhoea worse. Do have banana, yoghurt, chia seeds, kefir, fermented foods, ginger, miso. If I’m nauseous it’s probably my tummy so ginger should help. If I’m bloated and feeling icky then it’s my large intestinal area and the other things will help. I asked her about probiotics and she says the research is spotty around them. There was a good study done here where many bottles of probiotics were gathered from over the counter and they were tested. Almost all of them had at least half of the bacteria as dead. So for now it’s better to eat fermented foods with live bacteria than spending a lot of money on something where half is most likely dead. 

MRI pictures are available for me to look at.  I just got a text message.  No report available yet. I think last time after 14 days it becomes available even if the doctor hasn’t read it yet. I’ll keep an eye out.  I remember the knee surgeon saying bright white means inflammation and something not good going on.  My clavicle is blinding white.  There are a few other white bits on the pictures too but that is the main part that shows up.  

I wrote most of this post at the local cafe.  I had picked up some more of my letrazole medication and put in my next script for abemaciclib.  That needs to be ordered in.  I went to the cafe next door and got a chicken, avocado and halloumi salad for lunch.  I ate it all but I didn’t really enjoy it like I usually would.  I had thought about getting lunch at home but didn’t have the brain power to make my own salad today.  I need to do some sewing to meditate to try and get the brain calmed down again.  Then I might feel like making some dinner.  I got a cauliflower to try out a baked cauliflower steak recipe so I guess I’ll aim to do that.  Otherwise it might just end up raw if I don’t have the brain energy.