92. More up than down

My rheumatologist is confused. Flummoxed is what she actually said. I saw her again on Monday 14th October. My first blood tests showed high inflammation and lowered kidney function. My next ones were pretty much ok, just one inflammation marker a bit high. My next blood tests were excellent.  No autoimmune diseases showed up in any of the tests. No bone metastasis in my clavicle, no bone infection either from the bone biopsy. She was pretty sure that’s what it was as well. Along with the panel of rheumatologists who recommended the bone biopsy. My clavicle has been feeling better, it’s even feeling like it is moving back down to its normal position too. She says she’ll hand me back to my oncologist for now and she can see me again if things kick off again. 

Brent (exercise physiologist) isn’t surprised by this as the exercises I have been doing have been designed to realign my body. He is glad everything was investigated and nothing has shown up so now I can ramp up my program to increase my muscle and bone strength to counteract the hormone therapy that is trying to weaken those areas. I am allowed to do overhead exercises again which is so nice to stretch my shoulders in their full movements. They were starting to feel quite stiff even with certain stretches I was doing. On Monday 18th November he took me to a gym that he is connected to that has a discounted rate for his clients.  He ran me through 8 different machines he wants me to focus on.  I need to pull back 4:1 to pushing forwards for my chest and shoulder area.  My body was so used to being pulled forwards and down from my heavy boobs so I have to retrain my body again.  He said my strength actually can be a bad thing in some areas as I will use certain muscles instead of all the muscles within an area.  Like if you use just one finger to type instead of all 8 fingers and 2 thumbs.  

I saw my oncologist on Friday 18th Oct. She also is a bit confused by it all. The scans and blood tests were showing some things that were concerning to start but whatever I have been doing things are looking and feeling better. She says she’ll take it as a win even though she doesn’t understand why. I mentioned how my joint pain, muscle pain and fatigue were much worse when I was off the abemaciclib and better on it again. She says she believes that as it is suppressing my immune system I do have some sort of autoimmune/inflammation issue going on but the tablets are dampening it down and so I feel better. She says it’s a good thing as they are an excellent tablet to help stop the cancer reoccurring. She wants to redo my PET scan in Jan just to make sure nothing else has changed dramatically. She also said was there anything else that had come up. I said that Felicity (the lump under my left rib cage area that last year an ultrasound said it was a lipoma) aches and sometimes has sharp pains. I mentioned about the hard lumps on my upper thighs. The rheumatologist said to tell my oncologist as she thought they felt too hard to be lipomas. My oncologist ordered ultrasounds on all the lumps. She asked how my zoladex injections were going and I said that at times I get big bruises and I am still feeling like I am getting my period around 4 days before the injection.  She says when I see her in January that we can go back to discussing getting my ovaries out or a full hysterectomy.  The injections tell my ovaries to go to sleep so every 28 days they try to wake up and then are told to go to sleep again.  That could be stressing my body out and contributing to my inflammation issues and body stress.  Having a operation would mean a bit more stress but short term and then my body should get used to not having them.  The injections will go on for 7-10 years which is quite a long time.  She will refer me through to a gynaecologist next year to discuss options. 

The lump ultrasounds happened on Tuesday 22nd. They guy doing them was training or something as he needed a supervisor in the room. I had drawn circles around where the lumps are and the technician laughed as he said he was about to ask me to do that. When you’ve had so many ultrasounds you get to know what makes it easier for you and them. He spent a long time on Felicity. Not that he couldn’t find her but there was lots of angles and different types of scans to do on her. One was to see if she has gotten her own blood supply. They didn’t tell me if she had but I could hear that whooshing sound like on the heart Echo a couple of times. Maybe they were finding nearby veins or arteries. The leg lumps were next. My right upper thigh has 4 or 5 I could feel. Turns out they are probably just 2 but with more than one bumpy bit. Left side probably 2 separate ones. I heard them say “mobile and diffuse” for them. I have a GP appointment in a couple of weeks so she’ll get the results too. They all turned out to be lipomas, and nothing to worry about at this time. So that is good news. 

Mon 11th Nov I saw the radio-oncologist again. She checked out my skin, apologised for the broken blood vessels and the skin that looks pigmented and splotchy in some places. I told her I don’t mind and that it looks so much better than the black, cracked and bleeding skin I did have a year ago. The right side is still a bit warmer than the left side but she says that can happen. She is very happy with my mobility and my exercise programs. She wished many of her other patients followed directions for rehab. She tells me some people can’t lift their arm up 10cm either direction, or their chest pulls them forward into a concave position and their breathing is impacted. She tells me that she is moving to another hospital, one closer to home as she has an almost 2 hour commute. So when I have my appointment on June it will be someone new. 

This past Monday I had a blood test and then Tuesday it was my 3rd zoledronic acid infusion. It was nice saying hi to all the nurses again and they were interested in my sewing projects I’d done since they last saw me.  My blood tests had come back “really good” according to the nurse. There was a new tube that was fitted below the saline bag that had numbers at regular intervals. I asked what it was for and the nurse said “there is an IV saline shortage so this measures out the exact amount to use for you so we don’t waste any.”  I have heard of the shortage and it must be getting worse. I need saline for my contacts so maybe I need to make sure I don’t run out of it!!  The infusion itself takes about half an hour but I was at the hospital about an hour and 20 mins. I took my hexagon templates with me but realised I needed to cut out more before I could baste more fabric on. I need a number of white/lighter hexagons for my quilt project. So I cut out a bunch of templates. The catheter was in my left wrist, below my thumb and I could hold the template to cut it but sewing may have been a bit more awkward so it worked out in the end. After the infusion I went to top up my contact solution and I went to 4 chemists and only found one bottle. I got it and will go on a hunt tomorrow for a back up!  

The side effects from this infusion were a lot less than the first two. My head got a bit spacey, my fingers a bit stiff and my bad left knee a bit more sore and stiff than usual. I went to bed around 10.30pm but it took a number of hours to get to sleep. This morning I was still a bit stiff and a touch of a headache but I went to my exercise class. I got dizzy a couple of times and ran out of energy much quicker than usual but I was happy with my effort. I still ended up doing over 1km on the rower in my last set.  

Last Saturday 16th November was my 2 year cancerversay. Lots of emotions through last week and on the day. Not all unhappy ones but at times it has felt like it’s only been 2 months and other times it’s been 20 years. It’s been over a month since I last wrote and as you can see things keep popping up in regards to treatments and side effects, possible new surgeries and daily struggles. A friend recently had an MRI due to back pain and the fear of reoccurrence crashed around her. The results was “just” osteoarthritis.  That is the world we live in now when a diagnosis like that is a relief but it means more appointments, more costs, more time, to make sure that it doesn’t get worse and that exercise has to change to make sure injuries don’t happen. Life is thrown out of balance again. She says “No matter what ailment you have, the default response is always “I think it’s ok but because of your bc [breast cancer] history, we have to investigate.”  

The hormone therapy and cancer treatments reduces the risk of reoccurrence but comes with its own set of challenges. We are aged instantly around 10 years instead of going through natural menopause slowly. Being 47 and dealing with sudden onset of arthritis like my friend and I is depressing. Sometimes we wallow but we have a strong support community here where we live and there has been positives to cancer. We are in a club no one would want to be in but we have gained so many good friends who KNOW, without asking and giving support even when they themselves are struggling. 

Things have been going ok at the moment, more up than down. My pain and fatigue levels shift around. Sometimes I need to rest, other times I need to move to get relief. Sometimes it requires medication so I can sleep. I’m getting better at knowing how much rest I need between activities but I misjudge at times. Being kind to oneself is a skill that needs to be nurtured.  

So everyone out there, check your boobs, check your balls, your lumps and bumps, the weird skin changes, the discharge, the aches and pains that persist.  Go to the doctor, don’t be embarrassed.  As one lady has said “it’s a lot more painful to get your boob cut off than have a mammogram.”