80. Waiting and wondering

There has been SO much that has happened in the last week or so. Again and again and again it feels like outside forces are intent on throwing stuff at me to see how much I can handle. To be honest, it’s getting harder to get out of bed these days. Harder to concentrate on my creative pursuits, harder to convince myself that exercise is part of making me feel better when I am just so very very tired. Tears aren’t far away each day. It’s not just dealing with my own day to day stuff but there has been a number of stressors with close family health in addition to that which has made life a lot more complex too. 

I started writing this waiting at the optometrist last Saturday. It’s that time of the year again when I have my vision checked and often it’s not the best. The process for me is what shape mini scleral contact lens will fit the best. Peter (who I’ve been seeing since Nov 2019)  checked my vision when I arrived and my right eye is ok. That lens is about 3 years old now but my vision is pretty much the same in that eye as it was when it was new so he doesn’t want to change anything there. The left one was new last year and it was made into a toric lens which means in addition to the prescription on the contact lens it also has an astigmatism script on top. This means the contact lens needs to be loaded so that it stays generally in the same spot and doesn’t spin around. Well, the left one never really behaved and I was always spinning out of focus by touching my finger to the outside and spinning it a bit to focus it again. So, what’s the next step you ask?  I’d actually thought of this option while in the waiting room. A regular spherical mini scleral prescription contact lens plus glasses which will have the astigmatism prescription when I need to read, sew, play music etc. At this point the astigmatism prescription will only be for the left side of the glasses. I’m waiting for a call to say the new left lens is in so then I can go and get the glasses sorted. I would really like to see better but it’s more money I don’t really have and will have to ask the parents to help again. This is something I am having a hard time accepting.  For a very independent person all my life where I was so good at saving money and making sure I had some squared away for emergencies to having to rely outside of myself.  Nobody likes to lose their independence and it takes a lot of work to really feel all the emotions and consider what is really upsetting and how can I keep moving forward in such a turbulent space in my life.

I guess the big health related things happened last week. Oncologist appointment on Friday 23/02. Fine Needle Aspiration (FNA) biopsy on Quasimodo on Tuesday 27/02. Heart ECHO on Thursday 29/02. Lung Function Test on Friday 01/03 and already talked about the optometrist on Sat 02/03. 

I saw Dr Julia for my next check up to see how I’m going with the abemaciclib medication.  I had a blood test the day before and that came back all ok.  Since I had last seen her I had my covid and silent UTI episode.  I told her that my heart palpitations had kicked back up again, my dizzy spells, getting breathless when only a little bit of exertion, almost fainting a couple of times. I showed her the reports from the leg and back ultrasound as well as the lung CT.  She said to leave the FNA followup with my GP and she agreed with Dr Inder, but she wasn’t happy with the other symptoms I was having.  Me neither!!  After asking about the times I almost fainted she wondered if I had postural drop.  As in your blood pressure drops dramatically when you go from lying to sitting and/or sitting to standing.  I know about this as it is what Pither has.  She took my blood pressure.  111/75 with heart rate 71 beats per minute. “That’s good” she states.  I stood up and it shot up to 154/98 and 110bpm.  “You’re tachycardic” Dr Julia said tapping her pen over where the 110 was on the machine.  “I want another heart ECHO and instead of the VQ test or lung MRI I think we should do a lung function test first.”  Emily, a nurse practitioner, had been getting my details before Dr Julia came in and was writing notes.  She started to organise the paperwork for the tests. Dr Julia wants to see me in 2 weeks with the results.  I ask her if I should go a bit slower and lower weights with my exercise and she says “No, keep up as normal but if you do faint then tell your PT to call an ambulance and tell them to put you on a heart monitor and let them know what’s been happening”.  Right, let’s hope there is not a 4th ambulance trip to add to my tally.  

Next up Quasimodo. It was the same lady who had done the ultrasound before and she found him again and marked him so the Dr could see where to stick in the needle. She came in and commented that it was in an odd place. Thanks for that. More confirmation of me being unusual. Not that I mind, mostly, but being unusual medical wise means not much research and not much knowledge so less likely to be helped quickly or correctly. She swabbed the area with some stinky wipes and then stuck in a needle. The ultrasound technician said “nope, you aren’t there yet, a bit low I think”. Out comes the needle, stuck in, missed again and then third time lucky. Dr says “It doesn’t feel like a sebaceous cyst usually feels”. Not surprising considering the ultrasound result requested the FNA cos it looked weird. What followed was not too pleasant but it was way WAY better than the boob biopsy on Hector the Horrible. Four needles in total and when she stuck Quasimodo it wasn’t just in and out, once it was in she moved the needle around a few times inside. The whole thing took maybe 25mins for the appointment. I did get some bruising, probably about 50c worth this time around. (For those who haven’t read from the start you may want to read my blog post number 3, or 4 I think it was, to fully appreciate the 50c comment). I got the results today from my GP. Probable squamous lined cyst but inconclusive as not really enough tissue. Recommend 2nd biopsy or removal. Quasimodo can be evicted just like Hector and Lionel were. I’m all up for removal as this type of cyst can be cancerous, there were also some low grade keratin epithelial markers which can mean cancer. GP says to show Dr Julia the pathology reports and see if she wants to refer me to a general surgeon or Dr Inder. Or if the GP should refer me. 

Heart ECHO. At St George Private at the heart clinic as the Miranda site doesn’t do them anymore due to being short staffed. They were running about 20 mins late. A guy did the scan this time and asked me to take off my top and bra and put the silly one size fits most’ gown on. I said “no bra” and he looked confused so I said “no boobs” and he looks at my chest a bit surprised and says “oh right”. This was similar to other ECHO’s I’ve had but this time there was a lot more holding my breath and breathing deeply. He also spent quite a bit of time watching the little videos in slow motion and there were red lines and then green lines that alternated. He asked about my symptoms so I described the heart palpitations, being dizzy/vertigo, some breathlessness, especially when getting from from the floor or chair, or bending over to pick something up. He said “that sounds like POTS - Postural Orthostatic Tachycardic Syndrome.” I looked it up and yeah, it really does sound like that. A cardiologist has to diagnose it though. There’s a number of risk factors and I have quite a few. I’m female between 15-50, major surgery, chemotherapy, stress, trauma, viral infection. About 30 mins for this appointment and done. I got the results back today at my GP visit and they are fine. She says to check in with the oncologist about the POTS and if she recommends seeing a cardiologist.  Probably will as she thought about doing it last year in October. My GP says she would probably send me but seeing as Dr Julia ordered the test she didn’t want to step on any toes. 

Lung Function Test. Trying to find the Lung Lab was quite a chore. I was told that it was “near Radius”. So I followed the signs for Radius, down corridors and turning corners and then what looked like a dead end and doors with big stop signs on them. I went into the heart clinic I’d just past and asked reception and she said “it’s next to Radius”. Yeah, not helpful. When I said it looked like a dead end she said “just got through the doors, they should be open”. When I went back down the corridor and around the corner they were open this time. The Lung Lab was a tiny little office and the waiting room looked like it had been a broom cupboard without the doors on it anymore. Turns out it was an office and the testing room was around the corner. Inside was a large glass/plastic tube which I was told to sit on the seat inside. It had a door on it. The technician, Matt, says “are you claustrophobic?”  No I’m not but my mind had gone to The Hunger Games movies as the tube thing looks like what Katniss gets into and then gets taken up to the start of the games. Matt is talking again and I pay attention. He is going to do a sequence of tests. There is a tube which I am to put into my mouth and he’ll put a peg on my nose.  It’s not a laundry peg but a larger one with little soft pads so it doesn’t hurt my nose. He sets this up and then says for me to breath in sharply and blow out the air straight away quickly and then keep blowing out until he says stop. Now for a singer or a wind instrument player this is a foreign thing to do. You’d never empty your lungs in one quick go so it actually took me until the third time before he was happy. Granted the first time I started coughing when I exhaled so that messed up the reading. I was feeling a bit lightheaded so he said rest for a minute before the next test.  The second test he closed the door and I was stuck inside the tube. The door was sealed. It made a suctioning sound. There was an emergency release button inside which Matt pointed out. This time he wanted me to breath in and out quickly when he told me, about 6 times and then he shut off the air but I had to keep breathing in and out. Then the air on again and big breath in and then out until he told me to breath in, then hold for 8 seconds and then breath out until he says stop. Well, after all that I wasn’t feeling too good, quite dizzy and pressure in my head like someone was squeezing it on the sides. He says to have a few minutes rest and then he’ll give me Ventolin, 4 puffs through a cardboard spacer. We did the first test again but then I couldn’t hear Matt’s voice, I couldn’t see and then I felt him tap my arm and saying “let go, let go, let go” and I realised I was biting the mouthpiece hard, had my fists squeezed tight and I was sweating like crazy. He said for me to rest and he wouldn’t keep going with the testing. He put an oxygen monitor on my finger and seemed confused that my levels were ok at 99% and my heart rate was ok. I sat there  a good 10 mins before he asked if I was ok to stand up. I did and felt like the room shifted so grabbed onto the tube sides. After about 5 seconds it passed and I felt ok again. He said that my lung function was within normal range and was a bit confused to why I got unwell. I had a headache that was bad enough afterwards through the weekend that I had to take pain killers a number of times. It’s pretty much gone now, I feel like it’s lingering just a hairsbreadth away though. The final report wasn’t ready for today so I’ll have to wait for it on Friday when I see Dr Julia. 

Waiting. The unknown. It’s difficult in so many ways. It adds to the fatigue, mental and emotional fatigue but then that feeds into the physical and makes it hard to do simple tasks. I am certain that if Lewis wasn’t next door and I had to travel further for my exercise classes I wouldn’t go as often and probably wouldn’t have gone at all when I was having chemo. 

I am still going to write the Centrelink post. I haven’t quite reconciled the whole experience in my head and also there is still waiting and unknowns with the whole story there too.  Today I hope to have a quiet day at home doing some sewing to relax.  I do need to do some food shopping at some point but really don’t feel like going out and the mental strain it takes to concentrate for driving and being around lots of people.  Maybe later on in the day I’ll get some energy enough to do it.