Tuesday, January 31, 2012

Planning day

Today was planning day. I guess it all went well, except I am exceptionally tired tonight and feeling overwhelmed.

The MRI was fine. They injected the contrast via a cannula (of which I have developed a slight phobia after all the IVF) just before they started. The technician stated that it would likely take 15 mins. Thirty minutes and it was all done. I don't get claustrophobic in the machine, but I find the last 5 minutes or so terrible as I just want to move (my hand had gone numb, my other hand was itchy). I'm a little worried that they found something else given how long it all took but I have to wait for the results.

I had a little bit of time after that to grab some lunch. They wanted me to fast for the MRI for 2 hours. Which is fine, I probably wouldn't have eaten anything anyway, but suddenly I was starving and felt deprived.

I then went to get my face mask and CT scan. Once again waiting in the clinic to be called was sobering seeing people obviously sicker than me. However today I then got mad at myself as I was the youngest there by several decades. Yes it is a benign tumour; but I am in my thirties with two small children. It isn't fair! However I did nearly have a heart attack there. The receptionist asked if I'd been advised of the fees; I remarked that the specialist had warned of an out of pocket cost of about $3000 but didn't know the upfront fees. She calmly responded "$15,500". My jaw hit the counter. At that point she realised how shocked I looked and suddenly responded "oh you don't have to pay that, we get medicare to do it!" Phewee. Thank goodness for medicare!

Eventually I was called and they did the face mask first. This is made by applying a heated thermoplastic to my face. As it cools, it hardens and takes on the shape of my face. It was a very strange sensation feeling it harden over me, particularly as it was (by design) very firm. I couldn't talk, I couldn't move, I couldn't even blink. While it was hardening, they left it on and did the CT scan. I immediately began to feel nauseous. I don't know if it was the contrast, the pressure, or the sensation of moving within the CT scan. I tried to explain it to the staff afterwards and they remarked that most people don't even feel it moving (it moves about a cm, takes a scan, moves again). However I could definitely feel it moving. Blobby obviously doesn't like the CT scan. This has me greatly worried about the treatment as they need to move me in position. I guess I can tolerate it for a short period of time. I hope. 

So they now need to review the scans and determine whether I will get radiosurgery (a 1-2 hour session) or fractionated radiotherapy (which may be as many as 30 sessions). I'm not sure how I feel about either. They have given me a tentative start date of 8 February.

James, once again, has been wonderful and took the day off work to look after the kids. I had a rest once I got home and have been teary all afternoon. I am exhausted after all that. I am realising that we really need help. The house is a mess. I haven't got the energy to do anything with the kids. Some days are good, but other days I just need a nap and James can't keep taking time off work. So many of our friends have offered to help and I find it so hard to admit that we need it. I just don't know what to do. I keep hoping that I will wake up and one day I will just feel great but it isn't happening. I know I just need to keep trying to go to the gym, keep eating healthy, and trust that the treatment will make a difference. In the meantime I will wait to hear about what is involved next.

Monday, January 30, 2012

A bit blah

I was going to write a really whingy post last week, because I was feeling very whingy. But then a few good things have happened so I'm trying to be optimistic again. Irrespective, I just want to have a whinge so here I go (it is after all my blog).

The planning session is tomorrow. I'm feeling nervous. It will be a long day (I have to be there at 10am and won't finish until after 1pm) although at least it will be a child free day. I am pretty annoyed about the cost of everything. The MRI tomorrow will cost $700. I don't know how much the CT scan will cost. Yes we will hit the safety net quickly, but I am still pissed off. It just isn't fair that we are continually forking out money for medical bills. A friend put the seed of doubt in my mind that we could do this publicly, but I've looked around and the Wesley is on the only place in Qld doing SRS. I had a moment last week when we looked at the finances and I got quite panicky, realising that we would run out of savings very soon. And then we had a slight windfall in that James completed his tax and we got a larger than expected return; which will almost cover the treatment. Yay! I was so relieved I cried. And then I got pissed again that that money is immediately gone. Our roof still leaks and we simply can't afford to fix it.

I'm frustrated at blobby. He is making life very hard at the moment, although I am coming to understand him more. He doesn't like alcohol. He doesn't like loud noises. He doesn't like the dark. He doesn't like me being tired although that one is a bit random. Last week (on Australia Day) I was really sick. Thankfully it was a public holiday so James could look after the kids; but I had to take a stemetil and go back to bed for half the day. The dizziness was awful. And then the next day was better. I don't understand that.

I realised that it has been over a year that I have been feeling sick. Australia day last year was when I really went "I'm not coping". James was away, but Mum was here and I very nearly asked her to take me to the hospital as I felt so ill. Something just felt wrong. Realistically I had been feeling bad for a long time (I found a blog post from the previous October where I actually wrote that I felt something was wrong other than the pregnancy). Only a week after Australia Day 2011 I was admitted for exhaustion and dizziness. Other than no longer being pregnant, not alot has changed. 

On a good note we went to the Tim Minchin concert on Saturday night. The last time we went out on our own was when we went to see Wicked last year. I was still in hospital but my obstetrician gave me a leave pass to go. I can't say it was pleasant because I was so sick at the time. But nevertheless we went. Nearly a year on and it was such a joy to go out again, although VERY tiring. I loved Tim Minchin. Blobby didn't (que the loud noises, and darkness). I had difficulties walking out of the concert and had to hold onto James for fear of falling down but other than that it was good. Except he has a song that goes "Your love grew on me like a tumour" which I found only slightly amusing. I guess then blobby is really symbolic of James love for me? Maybe?

Today was a good day. I only had 5 hours of sleep (broken; thanks to both of my boys) but still managed to go to the gym and do a session on the crosstrainer. I am really feeling better for doing this, and last month I lost 2kg which is great. This month I am going to be stricter with what we eat; especially since I will likely be on prednisone which causes weight gain. I hope tomorrow I can find out more about what I should be eating, how fatigued I'll be and so on. This is going to be a long hard month.

Saturday, January 21, 2012

An active child

Amidst the stress and anxiety of this week I have been concerned about Angus and his weight. He was born little (on the 25th percentile) and has stayed on that percentile. A few months back, I noticed that he had slipped down to the 10th percentile. I wasn't too worried as he was having 3 solid meals a day, still breastfeeding, and looking healthy. I gave him a month to maintain his weight or even to put some back on.

And then he started to refuse breastfeeds. And some meals. And I noticed that he looked thinner. I weighed him again and he had only put on 200gm in a month and had slipped to the 5th percentile. Eeeek. I took him off to the GP who sent us back to the paediatrician for  a review. I spent the whole week stressing about it and desperately trying anything to get him to eat. I started connecting some of the dots and realised his vomiting had gotten worse again. I realised that this had worsened when I started him on yoghurt so then I started to worry if he had a lactose intolerance. A friend suggested a cows milk protein intolerance, someone else suggested a vit. D deficiency..... No wonder I was so confused.

I stopped giving him yoghurt and switched to using a lactose free formula for his breakfast and did notice an improvement in the vomiting (he wasn't vomiting a lot - maybe twice a day). He won't take a bottle or anything other than water from a cup so the idea of trying to formula feed him just seems too hard.

Last Thursday we went to see the paediatrician who thinks that he is fine, and is just an active child. He doesn't think that he is refluxing (well not enough to bother him). He doesn't think he has a lactose intolerance. He thinks that Angus is too busy looking at the world to worry about feeding. Nevertheless he sent us off for some blood tests (coeliac, the cows milk protein tests, iron, kidney and liver function) just in case and we get those results tomorrow. In the meantime keep doing what we are doing, try to fatten him up with icecream and yoghurt (which I'm still a bit hesitant to do) and see how he goes. We talked about his sleep (or lack of sleep since he is up several times a night now) and he thinks that he is just comfort feeding and we should try controlled crying.

I did ask about breastfeeding and radiation treatment and he seemed to think that there would be no problems. However he did emphasise that I will be tired, and that maybe I should think about weaning. Sigh. It seems every health professional is keen for me not to breastfeed. I have to confess, I am ready to wean but getting Angus to take a cup is the hard part.

I find it highly amusing that I have a child on the 5th percentile, when Charlotte was on the 95th. I swear that I am not doing a thing differently with them. They just are intent on confusing their mum!

Tuesday, January 17, 2012

We have a plan

We arrived at the radio-oncologist today with some trepidation. Sitting in the waiting room was confronting. There was people getting chemo with bald heads, a young man with a large craniotomy scar. A man with a large red patch on his head that looked a little like sunburn.

Then there was James, myself, and the two munchkins making a racket.

The first words David, the specialist, said was "I can fix this" and my hopes soared.

He was optimistic that stereo-tactic radiosurgery (SRS) would stop the tumour growing. David outlined the risks which do include death and nerve damage but highlighted that no-one has died in his 14 years of performing this procedure. He did however emphasise that while it may stop the tumour growing, it may not stop the symptoms; which he seemed genuinely apologetic for. Nevertheless the risks associated with SRS are significantly less than with surgery.

David was emphatic that this was the best course of treatment, and that also we begin it as soon as possible. He based this on my symptoms and the size of the tumour (not large, but definitely not small either). Especially since I do feel I'm getting a bit worse at the moment. Unfortunately there will be an out of pocket expense of about $3000 but with what we have already spent just to have children, this is small change.

So tomorrow I will book the planning session. This will involve an MRI and a CT scan to locate the tumor. They will then make a mask of my face that will be used to position me in the radiation machine so that I can't move. They then take this data to create a treatment plan and work out how many doses of radiation I will need. SRS works by firing many small beams of radiation directly into the tumour. It has less side effects than normal radiation as it is highly localised and so you don't need as many doses. We don't know just yet how many I will need but it is likely to be around 5 (just based on what Dr. Google tells me).

Once that planning stage is complete (about a week) I will start. The treatments only take around 15 minutes each. The immediate risks are due to the brain swelling but they will likely give me some prednisone to ease that. He assured me that this will be ok to continue breastfeeding (I had already researched and found out that radiation doesn't affect breastmilk at all, but I'm not sure about the prednisone). The other main side effect is fatigue. But since I'm already fatigued, I think I can live with that.

I'm feeling many things. A bit fearful. Very overwhelmed. Extremely relieved. Slightly disappointed that it may not relieve the symptoms but as I have mentioned before, I am coming to the realisation that no matter what approach we took, I would have some side effects. At least now we are limiting them before they really become problematic. I felt very comfortable with our doctor, which is good since I will need yearly follow ups from now until whenever.

Deep breaths. Look out blobby, here we come!

Here is an article about the machine at the Premion Cancer centre where I will get treatment. 

Sunday, January 15, 2012

Too much Dr. Google

Tomorrow we are off to see the radio-oncologist. I am feeling very anxious about this visit. This visit is just to get an opinion on whether radiation would be suitable, so I don't necessarily expect to come out with a treatment plan. But I am hopeful.

Of course I have been doing some Dr. Googling about gamma-knife radiation. It is possible to find some scholarly articles that give alot of information and are reliable on google. One article I found was published quite recently (alot of what I have found is older, or if published recently, uses old data. I find this interesting - meningioma's seem an under-researched area). This article found that 60% of patients receiving radiation reported a decrease in symptoms, and they had a 85-90% success rate in stopping tumour growth. Fantastic! Then they went on to say that there was a 10% mortality rate. Bugger. Don't plan on dying from this thing though, so I might choose to ignore that fact.

After reading this article I was getting very excited that it may be an effective treatment to get rid of blobby. Then I found another article which discussed that radiation is not suitable for tumours near the brainstem or those that cause vertigo symptoms. Bugger again. I guess I really need to just wait and see what the specialist says.

However while looking around at things I did find a term that better describes my symptoms - Disequilibrium. While I was reading about it, I just about burst into tears as it exactly explains how I felt during the pregnancy. It is a relief to put a word to how I've been feeling as "vertigo" isn't quite correct.

 Hopefully tomorrow will bring some more answers and an action plan!

No more excuses

It is that time of year where everyone makes resolutions, and promptly breaks them. I don't believe in resolutions, but I have made one this year. I resolve to get healthy. I have no more excuses; I have been very good at making them over the years. At first I was studying at uni. Then working 60 hour weeks. Then we were TTC and the stress was taking it's toll, then pregnant with Charlotte, then TTC again. Even though I didn't put on much weight with Angus I did go on a bit of a binge after he was born (and my gestational diabetes had gone). I recognise that I am a comfort eater and when I am feeling down I like nothing more than curling up on the couch with a big bowl of pasta and a chocolate cheesecake.

But no more. At no other time in my life do I have such a pressing need to get fit and healthy. Blobby is sapping my energy so I need to be  healthy to handle what he may throw at me.

Both James and I have resolved to get healthy. Notice I have not mentioned the word diet. I don't believe in them. I think it is a simple equation. If you eat more than your body burns off, you will put on weight. So get rid of excess calories and boost up your exercise and you should see improvements. Simple.

After the excesses of Christmas and Charlotte's birthday, it is pretty easy to want a healthier approach. We have rid our house of any treats. Not that we ate that much to begin with but no more ice-cream after dinner, no juices or soft drinks. Watch our portion sizes. Limit cheese and butter and no takeaways. And hardest of all, limit my baking to once a week. I have become quite fixated on fresh food. I don't want my family to eat any processed foods, it really worries me the amount of hidden sugar and salt that are in basic things. So we try make all our meal bases from scratch and we have bought a juicer to make fresh juice (did you know that freshly squeezed apple juice is pink, not that browny colour you see in the bottles).

In addition, I have gone back to the gym. I have to be realistic about what I can manage, but so far I've been able to do 30 mins on the cross trainer 3 times a week. This week I will try for 40 mins. I am really disappointed that I can't do pilates. Before I got pregnant with Angus I was going 3 times a week. However, after the last class, where just standing on my toes with my eyes closed set off a vertigo attack, I know it is too much. I also can't do the treadmill. It is too confusing for my brain which thinks I'm moving but the eyes tell it that it isn't.

 I don't excpect to turn into a supermodel with this approach, but it would be nice if I could drop a dress size. I have already lost 1.5 kg and am starting to feel a little better, even though I've found it very hard at the gym the last few days. I have to keep telling myself that this is to make me healthy for the future. Blobby will not defeat me.

Saturday, January 7, 2012

Which is worse: IVF or having a brain tumour?

I write this with some trepidation, however it is something I have been thinking alot about.

Which is worse: IVF or having a brain tumour?

When I was diagnosed with infertility, one of the overwhelming feelings was grief; yet I couldn't quite understand why.  In an attempt to make myself feel better I tried to think about what I had in life; my health, a wonderful partner, a good job. And I found myself saying alot "Why do I feel so bad, I'm not sick or dying".  In reading other's stories, I have heard so many infertiles make this comment. We are frequently told that being infertile isn't a disease, generally by those in the population who don't understand infertility and the impact it has on you. 

Well now I have a brain tumour. I guess that counts as a disease. So now I feel in a really good position to address this viewpoint.

Right at this point in time, I actually think infertility is worse. There are many similarities. The diagnosis of both was life changing and shocking. The feeling of hearing the specialist say "I'm sorry you will never have children naturally" and "I"m sorry, it's a tumour" was about the same. The seemingly never ending round of specialist appointments and diagnostic tests feels very similar.  In both situations, I am/was scared for the future. With infertility I was scared that I would never know the joy of having children. With blobby, obviously I am scared that I might not survive this whole thing, or that I may have debilitating side effects.

However the big difference at the moment is that hope that you hold on to. Right now I am hopeful that I will have successful treatment and beat blobby. With IVF I had hopes that the first cycle would work. When it didn't, it felt like my heart was being ripped out of my chest. I had hope for the next cycle, and the next, and the next and so on. Each BFN added to those fears and worries. Recently I have watched some friends go through these cycles of hope and despair, and it is a feeling I never want to have again.

I know that people will criticise me for this post - it is written with a caveat that my tumour isn't immediately life threatening so of course I can feel optimistic. I shouldn't feel bad about blobby, at least it isn't life threatening.

And I think this is the point. No matter what you are going through, the emotions and actions required of you are very real. Whether that be infertility, cancer, depression, diabetes, or any other hurdle that we have to overcome.

Nevertheless, I wanted to write this post to reassure any infertiles out there that what you are going through matters. When you find yourself saying "I'm not sick or dying", you can take a step back and acknowledge that it is really hard. But you will get through it, you will come out a stronger person. Most importantly though you are not alone.

Thursday, January 5, 2012

Rainbow Spider cake

Charlotte "helping" me. Note the different colours on her face
It was Charlotte's birthday on New Year's eve (I'll write about that later) and she wanted a spider cake. humph. I didn't want to make her a spider cake (I have an intense fear of spiders and I have no idea why she wanted a whole cake that looked like one). I wanted to make a rainbow cake; something I have seen others do recently and wanted to give it a try. So we compromised, and I made a smaller rainbow cake with a spider on top. It looked awesome. And it tasted fabulous!

And here's how I did it. I used a basic buttercake recipe, but tripled it.

Ingredients (for one buttercake)
125 g butter (I use buttersoft)
2/3 cup caster sugar
2 eggs
1/3 cup milk (I then often add a teeny bit more to make it moist)
1 1/2 cups self raising flour

Beat butter and sugar to a cream
Add the eggs one at a time and beat well. Add vanilla
Sift flour and add it to mixture alternately with milk

After I had made the batter, I evenly divided it into 6 portions. I then added some food dye and poured each colour into a cake tin. I only had 2 matching springform tins so it took me a few goes in the oven to bake them all. I put them in for 20 mins on 180 degrees.
I found it easier to assemble it inside the cake tin

I then sandwiched them together with buttercream icing (again triple quantities were used - one batch contains 150gm of butter creamed with 250gm icing sugar and add some vanilla) and iced all over (using my new spatula which Santa brought and made it so much easier). I covered it in sprinkles and used smarties to put a border on it.
All layered, now time to add the icing
To make the spider I just put one batch of the batter into a cupcake mould and baked for 15 minutes. Charlotte wanted a pink spider so I iced it using a thin, squiggly piping nozzle (sorry, don't know it's real name). Then gingerly put it on top. The legs I piped on using a ready made chocolate fudge piping tube I had spare in the fridge and used smarties for the eyes.

The finished cake
 I have to admit, this was time consuming yet relatively easy. And the payoff is huge. Everyone loved it, especially when I cut into it for the first time and revealed all the colours. I was too lazy to do 7 colours as that would have meant another batch of batter but I think it still works. (and yes, I know the colours are slightly out of order, shhh don't tell anyone. That is one of those "doh" moments, so I do recommend maybe writing down the order of colours ready for assembly). I think it was a very fitting way to celebrate my baby turning 3!

The big reveal!