89. More tests, more scans

I thought that the mystery of my left clavicle pain had been solved but no, there is more to the story.  Seeing as it’s really giving me more grief than it should it needs a name.  Clarence.  Clarence has been annoying me on and off since about Easter.  He aches, keeps me from being comfortable in bed, keeps me from sleeping, wakes me up, pokes into my oesophagus causing me to cough, hurts when I lift my arm up above shoulder height, has made me change my exercise routine multiple times and I would really like him to just settle down and shut up.  

I saw a rheumatologist last Tuesday.  She is very nice and very thorough.  She said that she had received the report from my oncologist and wanted to know in my words what had been happening.  Always nice when a doctor validates your experiences this way.  I gave her a run down and when I mentioned MRI she said she hadn’t been sent that.  I told her where it had been done and she logged in and found the scans and report.  “Hmmmmm”.  I asked her if that was a good hmmmm or a bad hmmmm.  “I’m not convinced about the arthritis diagnosis and I’m guessing your oncologist wasn’t either and that’s why she sent you to me.”  She went on to explain that the PET scan and MRI details didn’t look to her like either rhumatoid or oseto arthritis and my blood tests were not showing any markers either.  

She got me to sit on the little doctors bed and proceeded to pinch lightly, prod and poke pretty much all the joints in my body.  She left Clarence for last.  She got me to move my arms out to the side and then up over my head.  It made me grimace.  She then told me to totally relax my left arm and then she moved it up and around and asked me to tell her when I first first a pinch or ache or sharp pain or any other sensation.  Another “hmmmmmmm”. This time her answer was “I’m just thinking of the tests which I would like to order”.  She got me to lie down on the bed and did a bit more pinching and squeezing of joints and moving them around.  Then sitting back up and she wanted to check more of my chest area so my top came off. She listened to my chest with one of those cold metal stethoscopes and then she lightly poked all over my chest and rib bones and down to my sternum.  There were quite a lot of sore places I didn’t even know of, even to a light touch.  Especially my sternum.

Top back on and sitting back in the chair.  She mentioned that I possibly could have early osteoarthritis in a number of joints but without scans to check pathology they were probably arthralgia which is pain from the hormone therapy and if I stopped the medications then it would probably go away.  I asked her what she was thinking and she said “It is difficult to give any diagnosis so early but I would like to have some more blood tests.  I also would like a repeat PET scan and a bone biopsy.”  I mentioned about my oncologist saying the PET scan wasn’t ‘hot’ enough for a focal point for that.  “It can also diagnose other things than bone metastasis, like a bone infection, bacteria, viruses and other inflammation”.  I asked about bone infections just popping up and she said it can happen, especially after viruses.  I mentioned I had had covid in January and she said she wouldn’t rule it out but not to get stuck on covid being the reason.  

The blood tests she ordered were:

FBC - Full blood count

Creatinine (eGFR) - estimated Glomerular Filtration Rate.  Looks at kidney function

LFT - Liver function test

ESR - erythrocyte sedimentation rate - inflammation marker, immune responses

CRP - c-reative protein - also checks inflammation

Quantiferon Gold - latent tuberculosis.  

Blood Culture - identifies bacterias and yeasts in blood.

She also mentioned she wanted to bring my case up at the next medical meeting of specialists to get their opinions and to figure out the best place to do the bone biopsy.  She would ring my oncologist to talk with her and to get her to order the bone biopsy and PET scans as she would be able to do them quicker and through the public hospital system.  I came away from the appointment grateful that she was looking more into what is happening but also steeling myself for more tests and scans in my future.  Even though I am happy with how things are being handled and am accepting of things I can’t change and am mentally planning out the next month, I notice my jaw is clenching more and I only notice when it starts to ache.  My exercise physiologist says this is a PTSD response to everything that has happened in the last 19 months.  The body can do go into overdrive mode without any conscious awareness of feeling stressed.  

After the appointment I went and got the blood tests. The picture on this post is my blood in those vials.  Those big ones took 10ml each and the smaller ones 1-2ml.  The lady who took the form looked at it and said “I’m guessing you’ve seen a specialist, only they would do this extensive testing”.  I said “Yep, a rheumatologist.”  Next she mumbled “I wonder if we have those vials, let me check” and walked out of the room.  I look up at all the different vials on the shelves, wondering what she meant.  Oh those vials!!!  It was the big vials she meant.  She had to unscrew the plastic tube that covers the needle and put on a bigger one that would go around the big vials.  She felt my veins, little pushes down on the ones in my elbow.  “Oh that one in the middle will be good.”  She picked up the needle and poked again “It’s gone, where did it go?”  I had a vision of my veins squealing and yelling at each other “not me not me” and trying to bury themselves the deepest.  She poked me again with her finger and found one on the inside of my elbow.  In goes the needle and then first 10ml, then second vial of 10ml.  She pushed on the first of the smaller vials and said “I can’t get the suction right so…oh, sorry!  The needle has come out”.  I know it had as I had been watching it.  Quickly a cotton ball was pushed onto the bleeding vein.  I told her that the little round bandaids give me the least grief skin reaction wise than the tape, so she got one out and put it on.  She had to find a vein again and she used the one most people use on the outside of my inner elbow.  “Is that a bruise?”  I tell her it’s just scarring and she said she’d go in above it.  This time she got all the other vials filled and I asked her if I could take a picture so she lined them all up for me.  She said that some of the tests take up to 72 hours to come back.  That is ok, I am seeing my GP in a week and she is on the list to get the results.  Another bandaid.  She said I might get a bill for around $70 as one of the tests isn’t covered by Medicare.  Then she said “well, depending on what is written here sometimes there isn’t a bill sent out”.  So I guess I’ll see if one comes or not.  No adverse effects from all the blood being taken, just some small bruising where the needles had gone in.

On Friday the breast nurse called me to say that the rheumatologist had contacted my oncologist and the team had been filled in.  My oncologist has asked me to stop taking the abemaciclib medication from now until she tells me.  The rheumatologist medical meeting is on the 26th August, and if it is agreed that I’ll have a bone biopsy, then it’s best not to be on that medication for a few weeks before. It can mess up the results somehow.  I’m not that fussed about having to stop it as it’s the one that gives me bad diarrhoea and other GI issues.  It’ll be good to have a break from it.  The breast nurse is going to contact the rheumatologist on the 27th to see what was decided and then call me with the update.  I have 10 days to wait and see where things will go. Ok jaw, release yourself!  Maybe people can send me messages to remind me to relax my jaw.

I have had some good things happen since I last wrote. I went on a small trip away for 4 nights.  I drove 2 hours north and stayed with a friend overnight.  I hadn’t driven that far by myself since my diagnosis.  I saw a rest stop and considered having a break but it was just 20 mins until I got to my friends so I didn’t stop.  I did regret that decision when I was getting shooting pains down my fingers for the last 10 mins of the trip.  It was wonderful seeing them again and the weather was nice.  A bit too warm for total comfort but anything over 10 degrees Celsius is a bit warm in my book.  I stayed the night and then drove another hour and a half further north and stayed with some friends who I hadn’t seen since early 2019.  It was so great visiting them and getting to know their kids again.  We walked on the beach (my left knee wasn’t very appreciative of that the next day) and chatted a lot.  We played the singing karaoke game where you get points to who is the most on key.  I didn’t know many of the songs but a very fun game.  Their eldest, 15 year old girl, and I realised we both really liked The Vampire Diaries and Shadow Hunters TV shows and had quite a good long talk over those.  The weekend came to an end too quickly and I drove back to my friends place to the south and stayed on Sunday night again.  I left in the morning and got home at 12.41pm and so had 19 minutes to get ready to do an exercise class.  I had considered missing it as I was very very tired but I knew it would be good for me, especially after the driving and sitting.  It was good but I was BUGGERED by about 2.30pm.  I worked out if I kept my hands flatter on the steering wheel it was better for my fingers and I didn’t get the shooting pains in them as much.  

I went to the breast cancer support group and the dietitian I see did an excellent presentation about how to eat well when going through breast cancer treatments.  30-40% of all cancers can be prevented by improved dietary choices.  Those cancers are breast, ovarian, endometrial, mouth, oesophageal, stomach, pancreatic, bladder, liver, colon, cervical, prostate, and kidney cancers.  A few other statistics are 96% of Aussie adults could be making better food choices, 40% of Aussie school kids don’t eat a single vegetable on school days, controlling weight lowers breast cancer recurrence up to 30%, poor diet quality increasing risk of death in cancer survivors by 45%. A good way to looking at a healthy diet is stop smoking, very limited alcohol intake, eat lots of vegetables, fruits, have good oils (NOT coconut oil), oily fish, seafood, eggs, lean meats and keep moving every day, a variety of cardio, weight and resistance training.  If you do this then even if you have some extra weight your risk of early death is negligible. If you don’t follow that even though you have a good weight you have double risk of early death.  If you have excess weight and don’t do any of those you are 7 times more likely to die early.  Pretty crazy statistics and really shows how important it is to eat well and keep moving. It is the same thing to reduce your risk of dementia.  

I’ve done some sewing, a bit behind in my weekly challenge slow stitching but will catch up tomorrow.  I’ve enjoyed my choir practices and learning the new pieces we are doing.  I also am borrowing the bass recorder so I can learn it for some pieces too.  My fingers just fit on the keys.  It takes a lot of air to blow but I don’t find that it is an issue.  I’ve had some massages, seen my exercise physiologist, seen my psychologist and dietitian, homeopath and had my 14th zoladex injection. Next Tuesday is my 15th zoladex injection.  I will have 84-120 of these injections depending on it I have them for 7 or 10 years.  Or less if I end up getting my ovaries out of having a hysterectomy.  I wouldn’t need them anymore if I have those surgeries.  

It’s been quite a busy month with all the appointments (I include my exercise classes as appointments) and I have been quite fatigued in the afternoons.  Some days I do more than one task and other times I just have to rest.  My brain gets tired VERY easily.  Here’s hoping the next 10 days are on the quieter side before I hear what is in store for me next.