Scanxiety

Ahhh scanxiety at its best! Last month when I had my denosumab/xgeva shot I had two weeks of extreme bone pain. it was a different to normal pain that just about knocked me out! I was not even able to drink without feeling sick for days after. I was much more nauseous, and returned to regularly taking maxolon or ondensatron (sp?) 

However, as I was heading towards 8 days off work on long service leave to play with race cars I tried to ignore it... just scoffing down endone each evening.

By the time I was on leave the pain was manageable even with the long days trackside, although sleep was hard (most of my pain is in my hips/pelvis). Alcohol was still not good, and I preferred to just drink water, after having felt seedy for way longer than I should have after a couple of after race drinks.

First day back from leave was also my next denosumab/xgeva shot, and I detailed the increased pain. I see my onc each injection day as I have it at Cabrinin Day Oncology. So he has upped my fentanyl patch and ordered bone and CT scans which I had yesterday.

Curiously the scan day began normally, I had the CT first, then went and had the nuclear med injected into the canula left in my arm. They didn't say much with the CT, but then neither did I. Everything moved smoothly. I have clearly lost weight as the attractive gown closed easily this year (15kgs lighter)

My Friday was supposed to be wonderful, spending time with my sister who has driven down from Queensland for a week, we had planned a day of manicures and fun... instead she drove me back to the afternoon session for the bone scan!

I went to mum's for lunch with her and sister (we had planned a much different day) then returned for my bone scan. There were obviously things that they saw... and by the time my head was out of the first one and I could see the screen, I knew the areas in my pelvis etc were showing lots of lights. They also did extra scans of my chest and then I went in for a 3D one, detailed bone scan with overlaid CT "to try and get to the bottom of the lower back/pelvis pain".

It ended up with the doctor coming out to see me, and say that she was happy that it was mostly stable, although there were still a few spots she wanted to investigate and compare to the last one...

This has left me in a very confused state... my sister had accompanied me for the first time... she heard stable and was over the moon... I wondered why the doctor was telling me this... what weren't they telling me? did they want me to relax over the weekend and not worry...

Ahhhhhh as I said initially scanxiety (which my sister was impressed was even a word....LOL) not happy regardless of the result... and even with a stronger patch... I have been teary at work and in heaps of pain... arghhhhh... so now... as the pain is breaking through again, off for more endone, panadol osteo and sleep.

Today has been a good day

Report from scans shows no progress... Yay..

Got to see my regular onc... Yay

Got lots of stuff to deal with the pain...Yay

So off to bed, and I think I will sleep well....

Changing from femara to aromasin

So hopefully we will stay on track....

I even think I remembered to ask all the questions... Like the femara thing, and pain management...

Yay...even went for a walk...

It is a good day

Update

Well, this weekend I have missed out on a race meeting...due to being tired, and having a big meeting next weekend, so... Taking it easy.

Last week was rads every day... And work, and extra driving... Yes I know I am doing too much... But... Ok I have no excuse...so relaxing this weekend.

Pain has still been an issue... I ended up getting some fentanyl patches which I used last weekend to see me through the field of women... And took it off Sunday night before driving around. My beautiful sister was down from Queensland, and she drove me around on Friday, then we trained it and Michael drove over the weekend.

Wednesday was an extra long work day... Waking with a migraine did not help... So I had Panadol osteo 6 hourly and ibuprofen 8 hourly, got it into the background a bit.... It was the Open night at school, so I eventually went home after 9pm and popped a patch on and had an endone as well... 

Thursday I couldn't believe I woke up with an even bigger migraine...this time including nausea and spewing... Arghhh. Hoping it is the tension headaches we put the last lot down to....it hung around most of the day... I did take Thursday off, and Michael drove me around, got some nurofen migraine stuff and maxolan to reduce nausea... It subsided, I slept most of the day... 

Saw the breast surgeon as the nurse wanted me to come back after I was put on antibiotics when the stitches were taken out... Still a bit red and achy around the under arm, but he was happy it was heading in the right direction.

In the evening was the long awaited Talent Quest... With my son in the rafters on the lights and my lovely daughter part of a dance team... Brilliant night, glad I had the sleep.

Friday, woke with the migraine again... Can't believe this... But my neck is super stiff, so continued with the analgesics ... It subsided a bit... Did the work thing, then home to endone.

Over the weekend I can feel the migraine in the background, but not full on... Drinking lots, having green tea, taking it easy, still getting out for a walk. The pain is still there in my hips... This is getting annoying... I see the rads onc tomorrow... And have my last rads session....

Tired, not so emotional, just wanting to feel better... The patch is good, I feel mentally focused, more so than with the endone, but needing the endone for the ongoing hip pain, particularly when lying down, so sleep is a bit of an issue! 

Well on we go...

Results are in.... I think

And what the result are is leaving me in limbo a bit...Well to say I don't know what the bone scan revealed is an understatement.... The mammo and ultrasound were both clear, however the physical exam on Monday revealed a painful lump under my scar area... Which he want to remove ASAP, after the bone scan results are in... Hmmmmm. This will be removed under a local.... This scares me more than a general... I would rather not know what is going on.....

Went into day oncology and was sent to the bed area... Nerves went on higher alert.... Is my management changing from just the jab every 4 weeks.... Why do I have to lie down? Panic mode, or just a full house?.... Seems it was misread info... Phew...

So get the jab... Then wait to see the locum onc... Where did she go???

Soooo finally... And the results??? Ohhh yeah there seems to be something going on... Definite issues with right hip ball joint and top of left hip, and sacrum. Well they didn't compare the scans to older scans... So ummm... Yeah the hips have been irradiated last year, but the sacrum.... Yep... That is new pain, and explains the nerve pain down the legs.

Elbow pain, probably tendinitis, as expected... It was hard to get, as it was the arm the radiation juice went into...LOL 

So I guess that means it has progressed... I am trying to play it down, and convince family and friends who know I was having a bone scan that it's all good, and just getting more radiation for pain management....

It at least means I wasn't imagining the pain... But bugger....

I did get offered morphine patches... Or oxy contin ... But you know, I will just live with it.... That whole quality of life... Not wanting to be fuzzier than I already am... And I can't imagine I would be able to drive with that....

So for now it's 2 Panadol osteo 3 times a day, 2 ibuprofen 3 times a day and endone, once I am at home.... So still only taking one at a time, but every 4 hours.... Still feel pain, but still feel able to function.

Want to do Bikram, but soooo tired....

For now.... At paintball celebrating my oldest child's 18th birthday....hoping to see many more milestones in their lives!

Is pain the new normal?

Seems to be pain and pain management seems to be constantly on my mind at the moment...the weekend was a day longer with report writing day on Friday...so I enjoyed being able to have a 10am session of Bikram...wonderful....and I was energised enough to finish my reports...yay...and only had an endone when I went to bed...

Saturday...went to the 8am Bikram class, as I was up in time...I wasn't going to stress if I missed it...but was happy that I made it...got home and again pain was not on my mind got stuck into some shopping, cleaning...and cooking, before settling in to watch the V8 super cars...standing in the kitchen took its toll, endone at bedtime...most of the day had been pain free...

Sunday...could I do it? Yeah baby...back at Bikram 8am...woot woo!!! My body loves he heat...I am getting further into the stretches and balancing better. I don't know what it is that my body is loving about Bikram... But I love that I get time pain free...and full of energy...I even scrubbed the kids bathroom from top to bottom to prepare for my sister coming to stay later this week! Probably pushed myself a bit far with the cleaning....and then cooking...

 Made a magnificent roast dinner...perfect veggies and moving them to the tale promptly dropped the whole dish of them...then had a total melt down...I couldn't stop crying...couldn't move....Pyrex dish smashed, potatoes, parsnip, beet root, and pumpkin...nothing hurt, just couldn't move and everything just turned to tears.... My beautiful girl and hubby moved me away, and cleaned up... I was devastated over spilt veggies... Today I can't believe it ... I guess it all just came out...my two boys...hid. LOL

Well, pain free weekend came to an end back at work today...pain in hip and arm, I had to take an endone in the morning...had another when I got home, and about to head to bed with another...

I did go for a walk this evening...the first in a while...trying to keep active...wondering if I am overdoing it...but trying to fight this....

Bikram Yoga and Pain Management

October last year I started doing Bikram Yoga, as a new place had opened just around the corner from home...yay...well I really enjoy yoga, and wanted to do a class, but had not done any Bikram (hot yoga) before, I love the heat, but wasn't sure I would enjoy the class, I went along with an open mind, and fairly well hydrated...I thought!

Wow, heavy, intense, amazing feeling....I was in love... It certainly wouldn't suit everyone, but I felt a good fit. Even though I am fairly flexible many of the poses were challenging, in a good way...it meant I wasn't just going along...I was having to really extend myself....I loved it.

So...we skip a few months, I continue with Bikram, once or twice a week, would love to do more...but am so tired when I get home from work, and I am doing zumba and Pilates mid-week...trying to get a run in, and family life...as well as work....love being able to go more frequently during the school holidays...and I am getting compliments on how fit and healthy I am looking....

I feel my balance is improving - I had a fall and rolled my ankle and strained my reconstructed knee, which is still annoying me, but the bone scan was ok, so it's just osteo arthritis, and ligament damage.

Told my onc the exercise I was doing, and he was happy that I continue with it.

When I started the radiation this time, I was told it wouldn't burn me as much as the last lot did, as that was targeted closer to the skin, so as long as there were no immediate skin issues Bikram should be fine.

What I have noticed is I don't NEED to take pain relief medication when I have done a Bikram session. So if I do a morning session, I may only need to take an endone before bed...I was able to get to two sessions during my treatment so far, and on both occasions I felt great afterwards. The weekend I wasn't able to make it I struggled with pain. And it's the same during the week when I can't make it.

I double checked with my rads onc this morning, and she was happy with how I was managing, I don't do all of the postures, there are some that put too much strain on my arm and hips, but others that work into those areas to provide relief.... Yesterday's session was a challenge with the diarrhoea hovering around, and minor period pain like issues... But I had a few extra rest sessions during the class, and was on top of things when I left. Today I have a headache hanging around, could be dehydration...more water needed stat! Of course more sinister things now hang around in the back of my mind....

Of course Bikram yoga is not for everyone, I have tried to find medical articles...but nothing out there is substantial one way or the other. As long as it feels good, has good effect in managing my pain I will continue... My awesome Bikram studio has given me a complimentary pass, so I can go as needed, which is really fantastic, as cost cutting would have seen this go first!

So hoping to keep going, and repair some of my injured body, revitalise and recharge. Have given up on the rosé hip vital, still going with the glucosamine....must get back to the physio about my knee....

One more radiation treatment tomorrow, then back to work....

Counting down to holidays! The rads should have their effect by then...woot...and more time for Bikram