Feeling frustrated, and ticklish

After yesterday's post about feeling grateful, today I am feeling less so. I saw my neurologist today for my regular checkup but I went in armed with lots of questions. After the last few months of bouncing around on the dex, to say that I am feeling frustrated is an understatement.

The great thing about my neurologist is that he understands this. And I'm sure he wants me to feel as good as I can, but I guess there is only so much we can do.

Obviously, nausea (and fatigue) are still my main problems. He remarked that it is no wonder I am nauseous as "your tumour is tickling your cerebellum and it doesn't like that". I actually laughed out loud at that, and yes now, all I can see is "Tickle-me-Elmo" inside my head, laughing away.  We discussed whether there were any other medications I can take. He listed a few but doesn't want to put me on them due to side effects. Plus they are really just managing the symptoms. James had found a recent research article that discussed another drug - Emend - and it's effects on brain tumours (in that they help them shrink). However my neuro hadn't heard of it and a quick look at MIMS shows why - at $130 for 10 tablets it puts it out of the reach of most people. Plus it is usually only used in a chemotherapy cocktail. Nevertheless, he said that he would talk to my oncologist about it and whether there was any trials or samples or something.

There is also a progesterone blocking drug we could try, but he seemed a bit reluctant to try that as we don't know what type of receptors are on the tumour (oestrogen or progesterone). He did agree that I should talk further with a gynaecologist about it though. He was happy to refer me to my old OB (and in a strange coincidence, he mentioned that she lectured him at uni, and was really tough. Tee hee I can imagine my OB being like that).

We discussed driving - he thinks I am fine to drive although not long distances. And working - he thinks that perhaps I shouldn't try until the new year. Which is a bummer, and a relief. Especially since I can't find one at the moment, although a job ad has just popped up that would be perfect so I may well still apply for that one and see what happens. If I don't get that, I will just stop worrying about it, but it does mean I may have to talk to centrelink about what I might be entitled to.

Otherwise I am to stay on the dex until January at a dose of 1mg. I had a bit of a nystagmus today which is a bit of a worry and obviously why he wants me to take it all a bit slower. He said it may take up to 6 months to get off it, and then my brain could take 6 months to adapt. He also didn't have all my test results from the hypertension specialist.

So definitely feeling very frustrated. And perhaps a little more like this......than a happy ticklish version.

Feeling grateful

Today I am feeling grateful for many things.

I am grateful that James can work from home and is flexible enough that when I am struck down by a gastro he can take the day off to look after the kids. And I am grateful that he does this without even thinking.

I am grateful for two beautiful, compassionate children. Who, when they realised I was sick, wanted to first take me to the doctor then make me a get well card.

I am grateful for sunshine that will dry my mountain of washing, and also heat the pool so we can have a swim later today.

I am grateful for scientists, and pharmaceutical companies who make drugs that make me feel better. Particularly zofran. I am very grateful for zofran.

I am grateful for friends near and far who offer me kind words of sympathy, hugs (virtual or otherwise) and something to laugh at.

I am grateful for so many things this day. Is there anything you are grateful for?

A matter of geography

As I mentioned in the last post, one of the big things we have done in the past few months is enrol Charlotte in school (prep) for next year. I found this quite an emotional thing. When we started trying for a baby, we only really counted on the baby part. I never expected to have a schooler! (as Charlotte calls them).

One thing I also never expected, was the depth of emotion I feel about the issue of schooling. Now I respect every one's right to a different opinion on this matter. We all have our own reasons for choosing a particular school. However, one thing I strongly believe, is that you don't need to pay for a good education. Especially at the primary school level. I've heard lots of arguments (Oh the school near us is a bit dodgy, private schools have better teachers, you get more opportunities at private schools).  I feel it is a bit rude to teachers everywhere to have these assertions made - all teachers go through similar university courses. They all go to work as dedicated and enthusiastic as the next one. And I know many a person who went through a private school who didn't get the opportunities they wanted (either they couldn't access a subject, or needed extra tutoring etc) or even a quality teacher.

We feel that should the children need extra tutoring, or "opportunities" then we can use the money that we may have spent on private school to fund this. The cost of one year at a private high school would pay for all of us to go on an art field trip to the Louvre, or perhaps a history tour of Rome. I'm sure we could find lots of necessary field trips.

Nevertheless, we still had to make a decision about which local school to send Charlotte too. We are very lucky, in that we have several quite close to us. Actually, we have two that are almost exactly the same distance apart. This year, one of them has enacted a catchment plan (where they draw a line and say children in that area can attend, all others have to go on a waiting list). Technically, we fall into that school's catchment. Given that school is in high demand, it would make one think it was superior. However I have looked and looked, and I can't see much difference. Yes it is bigger (which is a negative in my opinion); but both schools have identical naplan scores. They offer similar programs (music, a swimming pool, languages). Both have very active P&C's (so watch out, there will be an abundance of chocolate drives), and both have benefited from the government's school's building program. The difference for us, is that one we can access by back streets - the other we have to cross a major road. So for us, it is a matter of geography. We are going to send Charlotte to the slightly smaller, slightly less well regarded, but so much more convenient school. I have no issues with this. I feel we have made the right choice for us, and most importantly, for Charlotte. She has already attended an open day and a "teddy bears picnic" there and is so excited herself. We bought her school uniform last week and I got a bit teary seeing her all dressed up ready for school. Now bring on next year when I have to face her first day as a schooler!

Slack

Well I have been slack. It has been months since I last posted. But I have been a bit busy. In these last few months we had a seemingly never-ending run of house guests. I saw all of my family (even if only briefly). We renovated our kitchen, laundry, outdoor retaining wall and finished off a few other bits and pieces (new garage door, new windows, installed solar panels, replaced a hot water system). We had some time away with my parents at the beach, then travelled onto Sydney for my baby brother's wedding which was wonderful and hectic and tiring. I seem to be on an endless quest for a job. We've enrolled Charlotte in school (eek) for next year, and James had another trip to the states.  So I guess I haven't been that slack.

Through all of this blobby has been behaving himself - sort of. I felt like I hadn't improved yet looking back, the dizziness is slightly less. However, blobby is not playing nice with the dexamethasone. My immune system has taken a battering and I am perpetually sick. I have had tonsillitis 4 times in the past few months and a never ending battle with coldsores. So when we got back from the wedding, I decided to go off the dex. I had gotten down to 0.5mg and was feeling quite good. The first few days were ok; I felt "lighter", my mood had improved, and the symptoms were under control. Then I got more fatigued. So fatigued. My bones hurt they were that tired. The nausea got worse. I started retching several times a day. Of course I was in denial that anything was wrong. Until a good friend made me realise that perhaps I wasn't ok. Last week, after vomiting half the day, I contacted my neuro who recommended I go up to the hospital. By that time, I had gotten my BP up to 160/100 and my heart rate up to 140 so I was put straight through. It turns out I was dehydrated too so put on a drip, given some zofran (sweet sweet zofran) and rushed through for an emergency CT scan in case there was more swelling. Thankfully blobby looks just the same. I was let home later that day - back on the dex (and at a higher dose of 1mg).

It's been tough since then. The dex mucked me around and I got sick again with tonsillitis (and a needle in my bum - ouch) and I have only been coping with a high dose of zofran. But today I feel a bit better. I am so so frustrated at this setback. Right now I am too tired to worry about too much else but I have had enough, and James and I have spent a bit of time researching other medications and options and looking at clinical trials.

On top of this, I have commenced tests to investigate my ever increasing blood pressure. I've done two 24 hour monitoring cuffs (the first one didn't record - grumble) which are looking ok but this weekend I have to do a sleep study. I still have to do an echocardiogram, ecg, bloods and 24 hour urines but I think it will all come back with nothing more than "white coat hypertension" but we'll see.

I promise to do more posts about some of the big things going on. I have written countless posts in my head but they never seem to make it to paper. But I will try to be less slack; once I find the time.

Resilience

It is in choosing to rise that we shine - Ingrid Poulson

Recently I read "Rise" by Ingrid Poulson. In this book, she shares the shocking story of what happened to her family after domestic violence, and how she overcame this heartache to rise, to go on. After the initial harrowing chapter of what happened, the book outlines the concept of resilience, how one can (and should) develop it.

As I was reading through the book, I realised that I didn't need to use the strategies in the book. I am already doing them. I have found resilience in my life.

This didn't really come as a big surprise to me. Many people have commented to me on how "strong" I seem. I'm not sure about that, but I do know that no matter how bad the day is, tomorrow is a new day. Hopefully filled with sunshine and unicorns that poop rainbows, but I won't know that till it comes. I'm not saying that every day is all happy smiles. Of course I have bad days when I get a bit down. I try to allow myself those bad days (sometimes only hours) because I know that something will happen to make things just a tiny bit better. One of the kids will make me laugh, or I realise the nausea has eased, or a friend puts a smile on my face.

As Ingrid outlines in her book, resilience isn't about "being strong" every day. It is about acknowledging those bad days, living through that moment, then moving on. 

I also don't have the sense that "it isn't fair". I won't say that I've always been like this. While we were going through IVF for Charlotte I had that awful feeling that I deserved all this pain and heartache. That I was a bad person and had done something wrong in life. Once we were trying again for Angus that sense had gone away, although I was still feeling that "it isn't fair" while pregnant (and sick) with Angus.

But then blobby came along. And you know what, it isn't fair. It isn't fair that I am diagnosed with a brain tumour while my precious children are still babies. It isn't fair that we have to spend so much money on cancer treatment. It isn't fair that I am too unwell to even take care of them. But life, in general, isn't fair. Once you start to accept that, it makes it easier to just get on with it. If I spend every day worrying about why this happened, what did I do to deserve it, then I take away energy to spend with my family. 

Because I haven't done anything wrong. I'm inherently a good person. Of course we all do some not nice things and have a few faults (really, who hasn't), but none of those mean that you will be struck down by illness or tragedy. I've also done some great things in life, and those don't get rewarded with things like winning the lottery either (sad to say).

Blobby has allowed me to recognise that I have great internal strength. I have developed coping strategies and skills that have allowed me to continue on every day, not matter what is being thrown at us. Sometimes this means we ask for help, sometimes it means I have a nap, or go for a walk, or watch some trashy telly. I like to make lists about things that need to be done (either mentally or on paper) and when I get a bit too procrastinatory, simply saying aloud what I need to do is enough to kickstart me into gear.  We all have our own way of coping though and there isn't any right or wrong way.

I see one of the greatest gifts that blobby has given us is this resolution and fortitude to just keep taking it one day at a time. But also that this is something we can pass on to our children. I hope that they will grow up to be resilient adults, able to handle anything this world may ask of them.

The above quote from the book affected me profoundly - "In choosing to rise, we shine". I make my own choices about how I handle blobby. I choose to go to the gym for my recovery, I choose to try and eat well, I choose to take my medications and do what is asked of me by my doctors. I also choose to not sit in a corner and lament the hand we've been dealt. I choose to rise.

(Rise, Ingrid Poulson (1998); Pan MacMillan books is a wonderful read for anyone who needs help finding their internal strength. I highly recommend it)

Something to be proud of

Doing physical exercise has been a part of my recovery process ever since I was diagnosed. I know how important it has been; to maintain my stamina, to maintain my bone density, and to try and keep on top of the weight gain (which I still haven't really managed). My ability to do exercises at the gym has obviously correlated with how I was feeling at the time. Many a day I could only do a low impact workout as all I wanted to do was vomit, while other days I could really push it.

You may recall that back in January I had a strange urge to try running. This only lasted a few days as I then had a bit of a setback. Since increasing my dex dosage again at the start of the month, I have had an improvement in my fatigue and nausea. I was getting a bit bored with my exercise program, so I thought I would try aquarobics. I was a teensy bit apprehensive about this. Not only was I the youngest in the class by several decades, but I also wasn't sure whether I could handle an entire hour in a class. But I really enjoyed it, and after the first week or two I wasn't as fatigued. I found that I could do things in the water like running, and bobbing up and down that I simply can't do on land as I get too dizzy.

But after a few weeks of aqua, I got the urge to try running again. I have seen several friends doing fitness tests for a certain weight loss program, and just wanted to see if I could do it too. I wanted to see how long it would take me to do 1 km (if I could even do that) on the treadmill. I was so proud of myself. Not only did I do the km, but I did it in 8 mins, 22 secs! I've done it a few times since and have brought that time down to 7 min 51secs. I can't believe that I am actually running (I've never been a runner; I look all ungainly and quite silly. Plus I really need a very good sportsbra as I am likely to give myself a black eye). I'm not sure how far I want to take it - but perhaps I should try working up to 5km.

Yesterday I also re-did my weights program. I had lost some motivation for doing weights, and I really do need to keep doing that to keep my bones nice and strong (especially since I had a fall in the kitchen this week, stupid socks on slippery floors but ouch!). The trainer gave me a whole stack of new exercises to do (one is called "the Torsinator" which just makes me giggle). At the end of our session, she commented that "I was really very strong". I don't think she realises how much that meant to me. To think that a year ago I was so weak and ill I could hardly even walk to the shops. That when I got home from hospital I couldn't lift up my son, or walk up the stairs. I could hardly even push myself out of a chair. I'm now leg pressing 100kg, chest pressing 20kg, and running!! I feel just a little bit proud of my achievements. Now to work on shifting this weight.

Hectic

The last few weeks have been incredibly hectic. I found my stress levels have been up and down but thankfully we seem to be settling down again and I'm feeling back in control.

The big thing obviously was all of my follow up appointments. I had my MRI two weeks ago. I'm used to the procedure now, but that doesn't stop the anxiety from building. The following day I was so jumpy. Every time the phone rang I was on edge thinking it was my specialist with bad news. I saw my oncologist the next day and the news was good. No tumour growth! The oedema has settled. No tumour shrinkage either however as my oncologist said, it is early days.

I also saw my neurologist that week who confirmed all of that. I discussed with both the dex doses I've been on and how much better I feel on a higher dose. Both agreed that I should go up a dose, however they disagreed on the cause of my symptoms. My oncologist thinks that the dex is keeping the symptoms under control, my neuro thinks the dex is causing the symptoms. Either way, I have since gone back up to 0.75mg and I feel good again. Still a bit tired, but the nausea has decreased. Both seem to think it will be months before I can get on top of all of that. Both specialists also confirmed the nerve damage to my trigeminal nerve (face) is still present but that is more annoying than anything. I now don't need to see my oncologist for a whole year, and my neuro in 3 months just to check on the dex. I can't believe that I am moving out of the treatment and active management phase into the monitoring phase! It feels very strange.

Of course other big things have been happening. We have been getting quotes for the house renovation which has taken up a lot of time; and surprisingly a lot of emotional energy. It is a big decision though with a lot of money to be spent, so I do want to do it right. We also finally got the solar panels installed on our house, fixed up the garage door, demolished an 8 metre high tree, and did some painting around the house. I've been going to aquarobics, started seeing a dietitian, and applied for yet another job.

The kids have been....livewires. It is like a switch got flicked on Angus and he has turned pure evil. We are having a lot of time outs with him. His favourite activity at the moment is playing in the dirt, throwing the dirt, putting the dirt in the cat flap. Or throwing rocks at his sister, hitting his sister, pushing his sister. Sigh. Charlotte unfortunately was sick this week with a nasty bout of tonsillitis but we have noticed a developmental change with her as well where her language, and emotions have taken another leap forward.

And not least of all of that, yesterday was my birthday. I had a fairly quiet day, but it was still in stark contrast to a year ago where I had my birthday in hospital. I am still thinking about this time last year and how sick I was. The busyness of the last few weeks, and how much has happened in the same time that I was stuck in bed, is staggering to me. I am looking forward to things calming down over the next few weeks, that is until we really get going with the renovations. But then it will be a different sort of stress; one which I am really looking forward to as the end product should be fabulous!