I'd really rather not

I read more about stem cell transplants last night and as interesting as it may be, I think I'd rather read about it than have to go through it. Have a look on the Leukaemia Foundation website if you want more info but it would mean bone pain as extra blood cells are made, harsh chemo with all the side effects of sickness and hair loss, a central line straight into the heart (no cannulas) because they have to give you so many different things it's just easier to have it all set up. Ages in hospital, ages waiting for the new cells to 'take' and for blood counts to rise. If I have to, I have to and I'll manage but I'd really rather not. It would totally mess with Dave and the girls, not to mention the rest of the family. If you're a pray-er then some petitions to the Lord Almighty who can heal along the lines of no more active disease in me and a negative result in my PET scan wouldn't go astray.

It is perhaps inevitable that I occasionally think about my death these days. I am not afraid of dying. It may not be overly comfortable but I can cope with discomfort. What is more difficult and upsetting is thoughts of who and what will be left behind and missed. My beautiful, annoying, clever, cute, frustrating, heart-warming girls. My lovely, annoying, clever, handsome, frustrating, companionable husband. My two families. Friends. Opportunities. Growing old. However, I am promised by the Bible that as good as life on Earth can be, eternal life in heaven is going to blitz it. It won't even compare. It's hard to get my head around it, but I believe it.

Deflating cheeks, hair and Eeyore

I think my cheeks are deflating a little, at least the ones on my face seem a bit smaller. I am hoping it is due to both the lack of steroids in my system and the extra exercise I have been doing. Last week I made it to the gym three times and also did a long walk from home. I didn't feel too tired from it all either. This week I have managed two visits so far. It feels really good to be getting back into things and slowly but surely getting my fitness back. As for the food, I have been trying to consume fewer calories but I don't always succeed. I have gone back to calorie king (calorieking.com.au) to help record how I'm tracking and to know how many calories I have consumed and how many I have burnt. It's free and quite handy.

My hair is growing back, which is good on my head and not so great everywhere else. It has been good not having to worry about leg hairs during the summer. Now my legs are itchy as the hairs grow back and they are also dry because I'm not on the roids any more. That was perhaps the one bonus of those crappy prednisolone pills - they cleared up my skin. I'm not quite sure what colour my head hair will be but it looks a bit pale at the moment. Maesie has suggested that perhaps it will be pink when it comes back. Luckily, it seems that won't be the case.

I haven't really been thinking about my scan results much but I think I am preparing myself for the worst. I am often pessimistic and have been referred to as Eeyore at times and this is another example of that. I am not convinced that my PET scan will come back showing no activity. I think I will have to have another scan further down the track. And I think that one will show activity too and that I will have to have a biopsy. I think I will have to have radiation or a stem cell transplant too. I will be quite happy to be wrong and I don't feel like this is a case of 'if you think it, it will happen' and I don't feel negative about it. I guess it's a defense mechanism and that's ok. I'll just take each part as it comes and in the meantime I will attempt to live life as fully as I can and continue to trust in the Lord. My life is His anyway so He'll work it out and I just have to hold tight for the ride.

In some crazy way, a stem cell transplant would be quite interesting. I'm fairly sure it would suck big time and I'd rather not do it, but it would be fascinating.

'Stable disease'

Dave and I went to the RAH today for my appointment with Dr Giri to find out the results of my CT scan and just for a checkup.

The CT scan showed that there has been no further reduction in the size of the masses they've been comparing each time. There hasn't been an increase though either. Apparently I have "stable disease" at this point in time. I have to have a PET scan in two weeks (on the 8th June) and that will indicate if there is any active disease remaining in the masses. It is quite possible that the masses have stayed the same size due to scar tissue that has formed during chemo.

If my PET scan shows there is no active disease then that will be it until my next checkup with the doctor. If it comes back positive for disease, which would actually be a negative outcome for me, I will have to have another PET scan a few more weeks after it to confirm the result because sometimes there can be a false positive due to the activity of macrophages and the like cleaning up the cancer cells that were killed during the last round of chemo. Dr Giri tells me it can take quite a while for the body to tidy up and dispose of all the dead cells.

If the second PET is still positive, I will need to have a biopsy so the result can be confirmed by pathology. If that comes back positive too then further treatment of some description may be required. That's a while off though and Dr Giri was not surprised that it had not reduced and he thought that the outcome thus far is fairly normal.

So that's it really. I still don't know much about what's going on inside me and we are still in limbo as to what the future holds. I guess it's still one day at a time but that's a bit annoying because I thought things were getting back to some degree of normal.

Radiology and a criminal

I went back to the Royal Adelaide today and had my fourth CT scan. I slurped down my goop, again assisted by the supplied straw. The nurse had a go at getting a cannula in but she stuffed it up and went to get a doctor to have a go. A doctor came and had a shot and he had better luck, getting it in a vein in the other arm first go.

The scan was fine and I should find out the results next Monday when I go and see Dr Giri.

While I was signing my Medicare form, a young man came in to the radiology department. He was wearing handcuffs and he was also handcuffed to a security-looking fellow and there was another security-looking fellow with them. His trousers had ARC on the back. I was in the presence of a criminal and he had tattoos and everything. I had no reason to stay though so I couldn't find out any more.

I caught the train in and out of the city and that's always an adventure during off peak times. Crazies, old folk commenting on how it gets cold these days once the sun goes down (you don't say? you know that's a blazing ball of fire up there in the sky during the day lending us it's warmth...), young punks not buying tickets and displaying their limited English education by peppering their conversation with 'like' and swear words, a drunk with a dog in a green grocery bag, an art student of some description with very small hands, some lady with not much weird fuzzy hair and massive cheeks. Always interesting....

Before I went into the city I went to Starplex this morning. I went on the treadmill for around half an hour and mostly walked. I did jog a bit and ran for a couple of minutes. Overall I feel okay about what I'm up to, all things considered, but I do see that it is a long road ahead as I gradually regain fitness, strength and anything resembling stamina.

No Barbie Bandaid for me.

This morning we have had a family expedition to the doctor. Maesie and Elsie had their 4 year and 18 month checkups and then they had their immunisations. Maesie shed a couple of tears, Elsie didn't even flinch. Maesie had taken her Barbie bandaids so she put one on each of her arms and one on Elsie's. The doctor asked whether I had chicken pox as a child and I was able to confirm that I had and that I have had shingles too. We did tell him that David has never had them though, so he printed out an IMVS form for Dave to have a blood test to find out whether he has immunity to the pox. There is a collection centre next door to the doctor so we wandered over there and Dave had his blood taken. He didn't cry either and Maesie put a Barbie bandaid on his arm too. I didn't have any needles break my skin today - it was a welcome change but I do feel a bit left out without a Barbie bandaid.





After everyone being so brave we all had a treat - the girls had icecream and Dave and I had hot beverages and a piece of cake. So much for yesterday's resolve to reduce the cheeks. Maybe I'll just try and do more exercise instead....

Yesterday evening Dave came home with a belated Mother's Day present - a garden seat for the front yard. He has put it together this afternoon and now I can admire my soursobs from the comfort of a seat. It's ace.

In other news, my hair is growing back a bit. My head is fuzzy and my hair looks like it is trying hard to grow, similar in appearance to a teen mustache.

Day 1 Round 9 - I don't think so!

Today is a good day as I would have started the next round but there aren't any more! Splendid. It is also good because I felt I had enough energy to go to the gym and do RPM. I was fairly pathetic at it, but it was good to do the class.

I did weigh myself whilst at the gym and have decided it's time for a cheek-loss regime. Both my face and butt cheeks need to be reduced and the rest of me may as well participate and shrink while I'm at it. No more biscuits or desserts for me for a while. And it's time to start running.

A few deliveries

It's been almost a week since I added anything here. I didn't realise it had been so long. Unfortunately, I struggle to remember what's going on from one day to the next, so to comment on a week is going to be a bit tricky.

Tuesday was a good family day. We went to the library, then the playground and then Dave's parent's place for lunch and so Elsie could have a rest. After that it was back home and we had a church council meeting in the evening.

Wednesday I dropped Maesie at pre-school and then spent time at home doing a few bits and pieces. I did the grocery shopping, which I found hard work and in the afternoon my new mobile phone was delivered. Our niece was also delivered for a sleepover later in the afternoon.

On Thursday Dave was away at school camp all day and I was on my own with the girls. I still find this quite daunting. Before I started treatment I used to work for two days a week and then be home with the girls for the rest of the week and I used to do all the things that need to be done - shopping, washing, cooking, etc. I even used to go to the gym and take them and put them in creche. During the last few months I have perhaps had both girls for a full day only a handful of times and I definitely haven't hauled them round like I used to. I just haven't been able to. I am hoping that at some point I will feel both strong enough and confident enough to care for my offspring without resorting to DVDs all day and just hoping I can stay awake through the afternoon. Anyway, we made it through Thursday ok. I had a meeting in the evening which went for longer than expected but was a good time away thinking about something different.

Friday was only yesterday. When I woke up I had two messages from my sister to say that she had started labour. I should have had some breakfast and a shower, thrown on some clothes and gathered a few things and left to go down to her place. But she didn't sound too urgent and so I thought I had a bit of time. I fluffed about at home and then went and had a blood test and then I got a call from my brother-in-law to say come. So I went home, got my stuff, spoke to my dad, sorted stuff out with Dave and then left and paused at the bakery to pick up some lunch before steaming down to Milang. It took me around 1.5 hours to get there and as I was getting my bags out of the boot I heard a bellow that meant business. I walked inside in time to see the newborn child in its mother's arms and swear on the precious little video footage of the birth. I missed the whole thing. I'm so annoyed about it. I had so many opportunities to leave earlier, I just didn't. It's not that they needed me, I knew they would do splendidly as indeed they did, it's just that I was aiming to be there and I failed to do what I intended.

The newly delivered baby is a girl - Hannah Grace. She was 8 lb 1 oz and 51 cm long. She is doing well and so is the rest of the family.

I stayed over last night to help with a few bits and pieces. Dave brought our girls down to say hello to their new cousin this afternoon and then we all came home.

And that's the last few days in a nutshell.

Last day of pills and some stats

This morning I took the last of my BEACOPP tablets (see the photo). I still have to take some extra bits and pieces but the main ones are done. In particular, the bitter, crappy prednisolone pills that I have had to take six of 14 mornings out of 21 are finished. Hooray!


Today is Monday 10th May and I started on Monday November 30th, 162 days ago. In that time I have had:

• 672 prednisolone tablets
• 192 procarbazine tablets
• 96 respirim forte tablets
• approx 336 potassium tablets
• approx 320 antiviral (famvir) tablets
• 8 bags of bleomycin
• 8 bags of vincristine
• 8 bags of doxorubicin
• 8 bags of cyclophosphamide
• 24 bags of etoposide
• 8 bags of mesna (plus a few tablets)
• 21 Emend anti-nausea tablets
• 8 pegfilgrastim (white blood cell booster) injections
• more than 10 red blood cell booster injections
• more than 50 blood tests
  
• 2 CT scans (that means two bottles of liquid concrete)
  
• 2 lung function tests
  
• 1 blood transfusion
• 7 days in the Lyell McEwin hospital
• 2 chest x-rays
• 1 ultrasound
  
• 2 cups of hospital soup
• a few other random tablets I can't remember
  
• an unknown volume of saline and
• an unknown volume of green tea.

Not a bad effort for someone who wasn't too keen on taking panadol.

For completeness, I should perhaps add the things prior to starting chemo:

• 1 CT scan
• 1 PET scan
• 1 lung function test
• 1 gated blood pool scan
• 1 bone marrow biopsy
• 1 fine needle biopsy
• 1 chest x-ray
• 1 ultrasound
• 1 lymph node removed
  

Let me go on, like a blister on the tongue.....

For the last few days I have had a blister on the side of my tongue. It has been quite sore and has made it hard to eat. Not that I've changed my diet, I've just pushed through and put up with it. It's much better this morning, which is good. I do, however have a sore throat and a bit of a cough today. I have checked my temperature and it is okay but I am taking things a little carefully because I don't want to go to hospital now.

It was a fairly big weekend and I wasn't feeling so great. I am taking it easy at home today while Dave is at work, Maesie is at pre-school and Elsie is at family day care.

On Saturday afternoon Dave, Maesie and I went to see Comedy Capers scout show at the Shedley Theatre while my parents looked after Elsie. It was a good show. I still don't quite understand what would make someone voluntarily go on stage to sing and dance in front of hundreds but each to their own. I know not everyone understands the things I enjoy. Maesie had a great time and was exhausted by the end of the day.

Yesterday was Mother's Day, which I sort of care about and sort of don't. I care about it more for my mother, mother-in-law and grandmothers than I do for myself. I am thankful for all they have done and continue to do for us, but I don't really rate myself for Mother's Day yet. I'm not convinced I'm worthy of the hype. Give me 20 years or so and then I might be happy for the fuss. We went to Village MacGillivray for lunch, which was very tasty even as I maneuvered it past my silly tongue blister. Everyone was quite tired because of the show, sinus operations, pregnancy, chemo and other factors but it was an okay afternoon. I spent some time working on an assignment with my Year 8 nephew and that was quite good. Dave did most of the child care duties, which was lovely because they wear me out and I was already pretty tired.

Today I need to have another blood test and hopefully that shows that things are getting back to normal.

Still below par

It's Saturday morning and I would rather be at the gym but I am knackered so I am staying home. Dave has taken Maesie, Elsie and their cousin to creche and I am enjoying a few moments of quiet at home.

I had a blood test yesterday and my haemoglobin was down to 84 (it should be above 100), which is part of what is making me tired. My potassium was also low which can make people tired. So I have a double helping of tiredness. My neutrophils have also taken a dive, although there were still enough to register on the test so that's more than I've had during other rounds. I'm feeling a bit annoyed about it all though because I had my last chemo on Tuesday and then in my head I've been thinking 'That's that' and I really hadn't allowed for these usual side effects and down time. I did get a slightly higher dose of some of the drugs during this last round because they had to adjust it due to my weight. I guess it's fair enough then that I might go down a bit more than the last few rounds. I'm still feeling pissy about it because I don't like feeling wonky.

I have had a bit of a sore red bit next to my right big toe, like it's in-grown, but I don't think it is. I am keeping an eye on it because Dave and I were joking that it would suck that if at the end of my last round I have to spend time in hospital because of a festy toe. Hopefully my white blood cells get their act together and come out in droves tomorrow and sort it all out.

The last few days have been okay, but I haven't been firing completely. On Wednesday Dave and the girls were all out and I had a good day by myself at home, but I still didn't get loads of stuff done. And I know that that's supposed to be okay, but I'm getting a bit over being under par.

Thursday was okay but much the same health wise. Maesie had preschool in the morning and then in the afternoon I took both girls round to a friend's place where they had a good play with her girls and I had a cup of tea and a chat. It was a mostly pleasant time with only a few moments of conflict resolution required between the children.

Dave has been trying to finish an essay this week and that has been difficult as I can't give him as much free time as he needs to get it done. He's been working hard on it but it has been tricky because he hasn't done an essay for the last few months, while I've been having treatment. He's not too keen on writing essays anyway so it's been extra hard to press through.

Yesterday I went to High Tea with Dave's mum, sisters and grandma, something we'd been planning to do since last Mother's Day. We just scraped in before this Mother's Day. We went up to Newman's Nursery and it was lovely. A two tiered plate of small bites of deliciousness, just for me. I did feel a bit weak and wonky after it though, but I'm not sure if that was a chemo thing or a big sugar hit! After that we spent some crazy time in the MacGillivray village as the show they are all involved in (Comedy Capers) had it's opening night last night.

We left with an extra child, a cousin aged in between our girls and headed home for a crazy bath time, tea time, story time and then bed. It didn't go too badly and they were all asleep by around 7:30 pm. They all slept well through the night and then it was time for the morning craziness getting dressed, breakfast, teeth, hair etc etc. Anyway, they were all sorted and that gets me back to the start of this post. I, on the other hand, am yet to shower, dress and brush my teeth. I'm off to do it now....

No run for Mother's Day

As much as it saddens me, I have decided not to do the Mother's Day Classic this Sunday. My reasons are as follows:

• It's a Sunday morning and I think I should be at church.
• I haven't really trained enough and am feeling fairly weak this week.
• I can do the course whenever I like, it's only around the river.

So there will be no run for me this weekend.

Bye bye BEACOPP

Today was Day 8, Round 8. The last day of IV chemo for my BEACOPP treatment for Hodgkin's Lymphoma. The girls stayed at Dave's parents and Dave and I headed into the RAH as we have done so many times this last 5 months. The nurse I was allocated today was the same one I had on my very first day. She enjoyed the symmetry, as did I. Her care made special bookends to my time in the oncology day centre.

I still have tablets to take for the next few days and then after that, I'm done. It's weird. I'm still not sure how I feel and what I think about coming to the end of this treatment. I do know that I am thankful to God for getting me and the rest of my family through the last little while. I am also thankful for the many, many people who have played a part in caring for us in any way, and there have been myriad ways.

I feel there's more to say about this somewhat auspicious day, but my brain is still chemo-ed so there's not much getting through. Maybe another day....