Wednesday, January 30, 2013

So close

I am on 0.25mg. I am so close to being off the dex. After feeling so sick earlier in the month, I decided to just drop my dose even though I wasn't feeling great. I just want to be done with this drug. Usually it takes a few days after I drop the dose for me to begin feeling better, although some drop downs have been easier than others. I managed quite well going from .75 to 0.5mg. This drop down to 0.25mg has been a bit harder.

It was probably made a bit harder because of all the anxiety surrounding the last few days. The wild weather and flooding we have experienced has been a worry. I kept looking at the holes where our skylights should be and hoping that the tarps would hold. Fortunately, they did and we survived unscathed. However all this extra stress does screw around with my adrenaline levels and so once again I crashed hard. Monday I slept for much of the day and I've been extremely fatigued since.  I've read that it may take up to a year for my body to be able to respond appropriately to stressful events, so I just need to be mindful of how these things affect me.

So I am determined to get off the dex. I will give myself at least another week before stopping it altogether. In just over a week it will be one year since I had my radiation. I would like to be off the dex then but I will see how I feel. This last step is scary. I am anxious that the swelling will return. I am anxious that I will continue to be tired and nauseous. But until I get to that point I just won't know. 

Wednesday, January 16, 2013

A bit of a bad week

I don't often share all the bad times. I tend to have a bad day at least once every week or so. In the last few months that has improved tremendously, and I might just have a bad morning that an afternoon nap fixes, or just one day that is bad but some really good ones after that. Unfortunately I seem to have had a bad week.  I'm not quite sure what set me off. I have probably overdone it. We had all the excitement of Charlotte's birthday and her birthday party. I felt like I was running on adrenaline for a couple of days. This isn't as good as it sounds as the dex. can play havoc with my normal cortisol/adrenaline levels so feeling a bit overstressed can really muck it up further. I also decided last week to increase my exercise and tried to do some running.

By Thursday I was a wreck. Thankfully it was a daycare day so once they were packed off I slept, then lay on the couch, then slept some more, more couch time - you get the picture. I also decided to drop a dose of the dex which may have been a bit silly. Friday I dragged myself to the gym for a light workout but I was still feeling awful. Nothing obvious, just more fatigued than usual, more nauseous, dizzier. I also had an earache which probably sounds like a small thing. However, just before I was admitted in April, I had an earache from the swelling so I now associate that with tumour swelling.

We managed to do some things on the weekend - shopping, catching up with friends, some swims in the pool (I find being in the pool very therapeutic), but I wasn't feeling any better. On Monday I tried to tackle some housework which had drastically taken a backseat. I bent down and popped a muscle in my thigh. Which was odd, and extremely painful. A few hours later I did it again in my calf which was excruciating. I then spent the next few hours getting myself very anxious about why I was suddenly having muscle spasms/cramps. Dr Google got a workout. My paranoia was in overdrive. Did I have low potassium? Was it low because I had cushings syndrome? Did I have a muscle myopathy? Was it a DVT? And around I went. And yes, I then sat and cried. It is times like this that I realise that I am sick; that other people don't have to worry about these things. It took a phone call to my Mum for a sanity check to calm me down a bit, otherwise I was all keen to go up to the hospital. I more than likely had low potassium or sodium but due to the heat, and not anything sinister. So James cooked up a delicious meal packed with things that contained potassium (sundried tomatoes are remarkably high in potassium and very yummy in a pasta dish too), and I had an early night as I was simply exhausted.

Today I am feeling so much better. This has been the longest time I've felt so unwell for quite some time. I have to keep reminding myself that I am a squillion times better than I was 7 months ago when I was admitted, however it is scary feeling this sick. And it is overwhelming when you are trying to take care of the kids, do housework and so on. I had wanted to take the kids out today, but we had another quiet day at home. Quiet if you don't count making muffins, cleaning out cupboards, playing games, making a rocket ship picture, doing some washing, separating screaming/fighting children, and having a swim. But I do intend to have a quiet one tomorrow. And after a terrible week, I am still on the lower dose of dex too - 0.75mg and on the way down, although I might just wait a bit before trying that again.

Sunday, January 6, 2013

A blobby update

I realised that I haven't really given a proper update about how blobby and I are doing for a while. I felt a bit overwhelmed after the last round of specialist appointments in November. Looking back, I probably had a setback from September to November. The trip away in September really took it out of me and I had quite an increase in fatigue. So by the time I saw my neurologist at the beginning of November I was well and truly over it. It didn't help that I was so emotional, but he did bring up the option of surgery at that time. The latest MRI had shown no increase in tumour size, and the oedema had decreased, but the nausea was persistent and quite frankly I had had enough.

The idea of surgery is quite scary for so many reasons. My neurologist seemed quite keen to consider it. He did acknowledge that the dex, and the tumour itself could all be contributing to the nausea, fatigue etc. I left that visit feeling a bit flat and overwhelmed. He did however prescribe a different anti-nausea drug (motilium) and to see how that went.

The following week I saw my oncologist who pretty much ruled out surgery. His take was that it wouldn't fix anything; it could possibly make me worse. So I would still have the symptoms. And in his words - I could even DIE (which he said in an overly dramatic fashion but I'm quite aware it is one of the risks). He reminded me that the recovery process can take a long time, he is talking years, and that given I am not even one year post treatment I need to be more patient, and kinder to myself. He was very keen to see me reduce the dex though. Especially as the bone scan I had showed that I've lost up to 20% of my bone mass (which means I have osteopenia, a precursor to osteoperosis). After that I saw my neurosurgeon - who in a 5 minute appointment declared me "stable", and to come back in 12 months for a review.

In this time though I started taking the motilium and to say it has helped has been an understatement. The nausea has decreased, and on some days I don't have it at all. On a bad day I find I have to take two tablets, but otherwise one has been keeping it at bay. And because I have been feeling so much better, I took the brave step of reducing the dex. I dropped down to 1.5mg reasonably easy so after a few weeks dropped it again to 1mg. I have to admit that was hard. I spent about a week with increased nausea and fatigue, and sadly there is a level of anxiety that goes with it too (I can't shake the feeling that the swelling is returning or worse when I have a bad day).

Yesterday I saw my neurologist for the first appointment of the year. He was very happy with my progress and was happy to not consider surgery for now, although was very keen to have a "plan" just in case. He discussed that the location of the tumour is so close to vital structures that any growth could be quite significant (as we saw with just a little bit of swelling, only a few millimetres was enough to stop me in my tracks). So I gather he wants to keep monitoring my symptoms and any change means surgery has to be considered. I always get a bit emotional after these appointments. When doing the standard tests (walk in a line, touch my nose with my finger etc) he happily exlaimed how far I've come since he first saw me, which always makes me realise how sick I was. I get the impression my neurologist is pretty chuffed that I am still here and functioning well; I think he expected a worse outcome.

So for now I continue as is, and try to focus on dropping the dex again. I have been very fatigued these past few weeks but the busyness of Christmas and then Charlotte's birthday has taken it's toll. Otherwise I don't see my neurologist again until the end of April, and I will see my oncologist sometime in March. Which will be the longest I've gone without seeing a doctor for over a year! I do have to have some blood and urine tests but they are more for investigation than anything. I've always had dodgy blood pressure and my neurologist has raised that blobby may be causing that, so there are a few tests he is doing to check the functioning of my adrenal gland. It will be interesting to see if that is related.

Unfortunately, the safety net has also reset, so paying the full fee for these appointments will hurt. But I am actually hopeful that this year we won't hit it again, since that means nothing really big has happened. Here is hoping for a calm, peaceful year!