Good results

Well it is nice to be able to report good results from my PET scan. The PET scan showed no active tumours!!! Yippee!! That means no more chemo. There is still a small area of something but they are confident that if it is any left over cancer cells that it will be treated with radiation. The radiation starts at the end of August and goes for a month and after that all I need to do is go for regular CT scans. My heart is still giving me a bit of trouble. The cardiologist would like to increase my heart medication as it is still beating too fast and working too hard (I still find it strange that this is called heart failure) and the medication slows it all down but unfortunately my already low blood pressure has been lowered by the dose of medication I am on, so he cannot increase the dose any more. We will just have to wait and see if it gets better on its own.

So that will be it from me for awhile. I will write again once radiation is underway. Bye for now!

Still no answers

Well unfortunately the CT I had yesterday did not give any definitive answers. It still showed masses there but they cannot tell if they are cancer or scar tissue. Unfortunately the doctor who reported on the CT did not provide a whole lot of information and did not say the size of the growths which was pretty disappointing. So next Wednesday I will be having a PET scan and that will give a definitive answer on whether there is any active tumour.

I saw the radiation oncologist today and he is going to start radiotherapy soon. Hopefully even if there is some cancer left this will obliterate it.

Arielle and I were on tv tonight in an interview about faith and healing - click on the link below if you would like to see it.

http://cosmos.bcst.yahoo.com/up/player/popup/index.php?cl=3469111

It's been awhile

Well it has been awhile since I updated my blogg - no real excuse other than laziness! I managed to get out of hospital on the Saturday and went up to mum and dad's for the weekend as Cam was at rescue helicopter. I spent the majority of the week in bed, either asleep or resting. For the first time in my life I actually woke up in the afternoon. Prior to this a sleep in for me would be 8am, so to sleep into the afternoon was a total shock for me! All of my muscles still ache and I get puffed doing even the smallest thing. Last week I can say I had no improvement at all - if anything I felt I was going backwards as I was getting quite down about being so sick. I knew I was going to be tired after the double stem cell transplant but definitely did not expect to feel so sick for so long. I told Kerry so when I saw him this week and he agreed I looked rotten but said it was to be expected. My tummy troubles continue to plague me and that is probably adding to the exhaustion. This week I think I have made tiny, baby steps and do feel better than I did last week. My mood has lifted too and at least this week I don't regret having the second stem cell transplant (last week I totally regretted having it as I was unprepared for how sick I would feel so long after the transplant).

On Thursday this week I had to have a heart monitor put on me for 24 hours to allow the cardiologist to look at how my heart is working and make sure everything is going ok with the heart medication I am on (he changed it last week). During the 24 hrs I had to record if I undertook any activity that could impact my heart, such as exercise or pain. They then compare the notes to the heart recording to see if any abnormalities match up to anything specific. Obviously I told Cam to stay well clear of me on Thursday night as I did not want to have to explain any night time activities!!

Next week is my tell all week. On Thursday I am going to be having a CT scan. I am still having night sweats so the CT scan which is usually just my chest, has been extended to my pelvis and abdomen to make sure there are no problems there. I will see Kerry on Thursday afternoon for the results and based on those he will decide if I have to have a PET scan (determines if there is any active cancer). On Friday I am seeing the Radiation Oncologist and he will work out with me when the radiation is supposed to start (Kerry said probably in about a month as I need to get some more energy in reserve for them to zap).

Hopefully next week I will continue to improve, even if it is in baby steps. I am loving being at home and enjoying everybody's company and enjoying eating home cooked meals. I even did a grocery shop last week for the first time in months and it is sad to say but I actually enjoyed it. It was nice to feel slightly normal again (I was exhausted when we got home). Well I had best be going - I will write again once I have the results on Thursday.

Still in hospital

Unfortunately I am still in hospital and very unimpressed with the idea of still being here. Kerry saw me this morning and wanted me to stay in until Monday so that they can keep a close eye on me. I eventually managed to convince him to let me go home tomorrow if I promise to keep an eye on my temperature and come in if I have any troubles and see both Kerry and the cardiologist on Tuesday.

The cardiologist saw me this morning and he said that the fluid on my heart and lungs would not go away by itself so I had to start on two lots of heart medication today. One is lasix which I am used to having through IV but now I will have Lasix tablets to take at home. I cannot remember the name of the other one. I also have to see the cardiologist regularly until the fluid all goes away.

Unfortunately I landed a two share room instead of a single room this time. The lady I am sharing with is in her mid sixties and drives me insane. She talks so loud when she is on the phone that I had trouble hearing the cardiologist talking to me this morning! The other thing is she constantly wants to talk. I had turned all of my lights out and was tucked up in bed last night and she kept chatting away. Then this morning as soon as she heard me roll over and stretch the talking started again. Even my one word answers, grumbled out of my mouth did not give her the picture that perhaps I was trying to sleep!!

Hopefully tomorrow they will let me go home and I don't plan on coming back!

Home for a short visit

I did manage to get home on Monday but unfortunately I landed back in here last night.

Monday was so exciting. Kerry had told me over the weekend that as far as they could tell from the scans there was no more tumours left and that was just fantastic news. I still have to have radiation treatment but at least we know that the tumours have already gone so the radiation is just to be sure and to get any rogue cells that are remaining. So home I went on Monday. It was just great to be at home with Cam and the kids. My energy levels were pretty low but that was to be expected so I just had to spend a lot of time resting in bed or on the couch. On Tuesday we went with mum, Nat, Jane and her kids and Tiernan, Arielle and I to a play centre. The kids had an absolute ball. Arielle even had a go on the slippery slides and Tiernan was making mum, Nat and I take turns at climbing through the play structure with him and then going down the big slippery slide. I was exhausted by the end but it was worth it. On Wednesday we had a quiet day at home and the boys finished building the sandpit in the backyard. I managed to get a little bit of gardening done (Tiernan and I planted a little herb and vegie garden earlier in the year).

Late yesterday afternoon I started getting pains in my heart and they would not ease so I came in to the Mater Emergency Centre. They did a few tests and it turns out I have fluid on my heart and lungs. I also had a temperature (I had to sheepishly admit to not taking my temp since being home - a big no, no as I am supposed to be taking it several times a day and coming into hospital as soon as I get a temp). So they have stuck me on some IV antibiotics to combat whatever infection is causing the temp and then I have had a heap of tests on my heart to try to work out what is going wrong with it. They call it heart failure but it is not as bad as it sounds it just means that my heart is not doing it's job of pumping fluid out properly and therefore my heart is retaining too much fluid and then the fluid overload has leaked into my lungs. It is not really too painful but more uncomfortable than anything else. My emotional state is probably of more concern as I am so peeved that I am back in hospital - I so do not want to be here. Tomorrow I should be seeing the cardiologist and hopefully then I will find out what is going on and what they plan on doing about it and then hopefully I can get out of here.

Yeah - No More Chemo!!!!!

Yes the heading is right - as long as there is no new growth anywhere, I am finished with chemo. I have to have radiation but that is supposed to be a walk in the park compared to a double stem cell transplant! The timing is good as I am totally sick of it all. I feel like I can barely remember what it is like to feel well. The past few days I have felt miserable and sorry for myself, wishing there was some way to take a break from chemo side effects! But unfortuntely once the poison is in my veins there is no cure but time. I am improving, although I am still plagued by tummy troubles and my cold so Kerry has changed my release date to next week - hopefully early in the week.

On Tuesday I had a lovely day. Cam, Tiernan, Arielle, mum and Nat all came in to visit and it was just wonderful. It really lifted my spirits. Yesterday I had a lovely visit with Cam and Tiernan. Tiernan and I had a lovely cuddle in bed for ages. We were looking at photos on a digital photo frame that Nat bought me. Tiernan would name the people he saw in the photos. There was a photo of him as a baby and I was holding him. He said to me "Oh baby Tiernan and who is that?". It took me a minute to realise that I had long hair in the photo and Tiernan had just turned 2 the last time I had hair so it was probably reasonable that he did not know who it was! He talked to me a lot about when I was coming home and when I would be better. Those conversations always break my heart - it is so much for a 3 year old to understand.

This morning I woke up to Cam rubbing my hand! It was a lovely surprise. I had woken up earlier and had breakfast and then felt miserable so climbed under the covers and went back to sleep. I did not know that Cam was coming in so it was a lovely way to wake up from my snooze!

The weather in Brisbane is freezing at the moment and I don't think the hospital a/c has got it right because I am freezing in my room. Part of the problem is my lack of hair as my head is freezing more than anything else on my body. The ward has lovely warm blankets and I am constantly wrapping them around me!

Continuing to do well

I had a CT scan this morning (I had some numbness in my left hand) and the results are in and all is very good. I don't know the exact size of what is left however Kerry said he was very pleased with the results and that the chemo has definitely worked. I will still have another CT in 2 weeks as the chemo will still be working away at the tumours.
My counts today were still good - my platelets were low but they are always the last to recover. If things continue to go this well Kerry said I could be out in a few days which is fantastic.