Well in the past month I really haven’t managed to write much on my blogg – a combination of feeling completely exhausted, feeling unwell or simply not feeling in the mood. Hopefully now I will be back to my usual self and updating it quite regularly. So I will apologise upfront for a very long blogg entry today as I will give you an update from May 2 till now. But before I start here are a few photos of Arielle and Tiernan to put a smile on your face.
This is Tiernan on a day out at Australia Zoo with Tim and Jess.
The first photo is of Arielle and I at high tea. The other two are on my hospital bed. The last one is of my belly from all of the injections!!
Here goes on updating from May 2 to now. Be warned this blogg is very long.
On Wednesday May 3 I had my stem cells put back in. Having my stem cells put back in was easy – it was just like a blood transfusion and I slept through the whole thing as they gave me Phenergen to reduce any reactions. On Thursday morning I felt absolutely dreadful and by this stage my white cell counts had bottomed out. I called mum and asked her to come in. Thursday night I was still feeling awful, I had severe diarrhoea and was I was totally exhausted. I was on a Fentanyl patch (an opioid analgesic with an analgesic potency of about 80 times that of morphine - thankyou Wikipedia for that description) as well as regular morphine injections to control the pain. My pain stemmed from a few sources – the main one being the diarrhoea and secondary to that was my mouth and throat. I thought that once I stopped eating (I was on artificial feeding and was now consuming only water ice chips) that the diarrhoea would stop but unfortunately even with nothing but water was going in there was still a steady flow out! Going to the bathroom was usually enough pain to make me nearly throw up – very pleasant indeed.
About 3am on Friday morning I woke up feeling like death warmed up. The nurse came to do my obs and that is when the dramas started. My blood pressure was very low and my temp was 38.3. Not a good start to the day. Kerry was called (I am sure he appreciated being woken at 3am), they took a tonne of blood out of me and they started me on some IV antibiotics. I was not allowed to have anything to get the temperature under control until pathology tests came back. By 7am I was feeling even worse and ended up screaming at a nurse because he took 40 minutes to get me my morphine injection (I sound like a junkie) which I was desperate for at this stage as my temp still had not improved and my head was absolutely pounding. Finally I was also allowed some Panadol and that at least brought the temp down a little. They pumped my body with fluids and antibiotics. Pathology revealed that I had three bugs causing my infection – two of them were tummy bugs and the third was the strep bug. All of these bugs are naturally occurring and necessary in our bodies but usually your body sees them as bugs and acts accordingly. Unfortunately seeing as I had absolutely no immune system these bugs caused infections.
Despite their efforts the day did not improve and unfortunately my blood pressure would not behave itself (it got as low as 70 on 45). Then to add to my troubles my blood oxygen levels started dropping to below 94%. Usually this would not be a big issue as they would just give you oxygen but unfortunately when I had chemo last year I had a reaction to one of the drugs called Bleomycin and that leaves you with an allergy to high dose oxygen. The catch is they don’t know for sure what level of oxygen that you will react to (the allergy causes oxygen to be seen as a toxic gas in your lungs and you can die from it). So the only safe option is to not give you oxygen unless your life literally depends on it and you would die without it. So given the dilemma that we were facing I was told I had to go to the ICU. I was a little apprehensive about going as the ICU sounded like very serious and very scary stuff. I was calmed down and shipped off to a special room in the ICU that is used for hematology and oncology patients. It is a sealed room that is used to protect you from bugs and germs because you generally have no immune system. Mum and dad and Tim packed up my room and off to ICU I went.
Ben and Rebecca came by to visit and dad and Tim went home. Ben and Rebecca left and it was just mum and I. At no point were we specifically told anything was life threateningly serious so we did not call Cam to come in (he was with the kids and his parents up the coast). By this time I was exhausted. It had been a big, scary day and I wanted some sleep. Well the staff looking after me had other ideas. Unfortunately things were not improving with my blood oxygen levels. They told us that if they got to 84% they would have to make the decision whether to give me oxygen. I could maintain 84% whilst awake but as soon as I fell asleep it would drop to 79%. So I was continually poked and prodded and kept awake. Each time my blood oxygen got to 79% they would sit me up and make me breathe deeply. By 2am things got a little dicey as I developed a pulmonary edema which is fluid leaking into your lungs and this is caused by severe infection, low blood oxygen levels and too much fluid retention. Without immediate treatment it will cause respiratory failure. By this point I also had severe fluid retention and they were concerned that I could have kidney failure. Sometimes I believe that ignorance is bliss and this was one time that I am really happy that I actually had no idea what was going on. It was only after the event that all of this was explained to me and at the time I had no idea how serious the events of the night were. I think I would have been very scared had I known. I was given a drug called Lasix which is a diuretic that works quickly to expel excess fluid from your body. Thankfully this worked and by this point the antibiotics really started to kick in and all things started to improve. On Saturday afternoon I was returned to the ward (at this stage blissfully unaware of how serious the events of the night before had been).
The ICU doctors came to visit me on the ward and explained all that had happened on Friday night. It hit me pretty hard and I found it quite scary to think how dicey things had become. One of the things I became really upset about was that we were not told during the night that things were so dicey and so we did not call Cam, Dad, Ben and Tim to come in just in case the worst happened. I did not get to speak with the doctor that actually looked after me but the doctor I spoke to said that going to ICU is always serious and next time we should see it as such up front. The week plodded on and I felt pretty miserable for the start of the week. My body was still fighting the infections and the diarrhoea had not improved. The only thing I was eating were ice chips. Then by Friday I had started to feel a little better and was even able to start eating. I had had someone stay with me each night since my night in the ICU. Part of it was a comfort thing and part was to help me do basic things like get up and go to the bathroom as I was quite weak by this point.
My counts started to recover on day 8 – Thursday 10th May. My white cell count was 1.3 – it had been 0 for 7 days. They were very impressed as usually stem cells take 10 to 14 days to engraft. On Friday a good friend and I had a good discussion about our faith. She had sufferred through losing her child and I was amazed that she still had faith that God and heaven existed. I had pretty much lost my faith. After she left I kept thinking about our discussion. That night Kylie came in to stay. We had trouble sleeping and at 1am we were still awake. I decided to sit in a sitz bath (a salt water bath – eased the pain in my behind!) and covered myself in towels for some dignity and to stop freezing to death. We spent a few hours talking. During this time I realised that I had not updated my blogg for sometime and that I probably had a few people worried. So later that morning I called Natalie and she updated the blogg. As Kylie and I were chatting away we ended up discussing our faith. I explained how I felt and what my friend had told me that day about her faith. I had begun thinking that if after all that she had been through she could still have faith then maybe there really was something to believe in. Kylie and I started discussing all of the things that had happened to me on my journey with cancer. We started to see all of the ‘lucky’ things that had happened and were especially amazed with Arielle’s birth. The word miracle started to come up. All of a sudden it hit me like a lightning bolt. For weeks my family had been trying to tell me of the canonisation of Catherine McAuley and because I had lost my faith I simply would not listen. Then I started to realise what they had been trying to tell me – people were specifically praying to Catherine McAuley for me to be healed. It then dawned on me all of the connections I had –
* My auntie Joyce is a Mercy sister and had just completed a pilgrimage in Ireland for Catherine McAuley and had also visited Lourdes and prayed to St Bernadette for my recovery
* I went to Catherine McAuley high school
* I was being treated in the Mater hospital which is run by the Mercy sisters
* The Mater hospital is on Catherine McAuley place
* My cell counts had recovered on the 10th of May – the Mercy sisters arrived in Brisbane at 10pm on the 10th of May 1861
As you can imagine I was ecstatic. I had been feeling pretty miserable in relation to my long term survival. Only 10% of people with Hodgkins are not cured with the initial ABVD chem. I had been one of the unlucky ones. Then had the ESHAP treatment and that did nothing at all for the tumour. So rare is this chain of events that the TMC treatment I had had never been given before in Australia. Also getting three infections, having such low blood oxygen levels and getting a pulmonary oedema again were not common complications of high dose chemo (so basically I was unlucky all round in this respect). All of a sudden I realised that I had to go through all of this to make sure that my recovery is seen as a miracle by the Vatican. Knowing this I had restored my faith totally and it was just the ray of shining light that I needed. My spirits were very high.
Mother’s day was a lovely day. Tiernan brought Arielle and Tiernan in and we had a lovely morning tea. Arielle has a little red and white polka dot tea set that mum and dad bought her and we used that to have our lovely morning tea. Then in the afternoon, mum, dad, Jess, Tim, Ben and Rebecca came in and we had a high tea (we had bought mum some gorgeous high tea pieces and Jess and Tim had painstakingly prepared a lovely high tea). It was a lovely day.
On Monday morning I found out that during the next round of chemo (BEAM) I only stood a 1% to 2% chance of the treatment actually killing me. Between finding out this news (I thought it was much higher), knowing about the prayers that were being prayed for me and knowing I had one of the best haematologists around I was feeling on top of the world. Unbeknown to anyone at the time, I was actually starting to experience something called hypomania. It is a psychiatric condition (similar to Bipolar disorder) that in my case was caused by a combination of the drugs I was on. As my counts had recovered more I was allowed out for some day pass. Tiernan was in child care and I decided to go with some friends to high tea and then to a day spa. I was in quite a state (high) by the time I left the hospital and I actually turned up to high tea in my pyjama top with trackpants and pink slippers. I was due to get changed (mum brought some clothes along as I had no normal clothes left at the hospital just pyjamas and trackie pants) but decided I would not bother once I got there – that goes to show you the state of my mind at the time to turn up to high tea in pjs!! (And the photo of me holding Arielle proves it!) After the day spa I visited Cam and the kids at home.
In the wee hours on Tuesday morning I was wide awake and decided to call Natalie. I spent 2 hours on the phone to Natalie in London – she is in hysterics whenever she recalls this conversation as she said I sounded a little more than slightly loopy. After Natalie decided to stop talking to me I called my aunty Rita in Sydney and at least another hour on the phone. A little later I started having episodes of lucidity with a high feeling and episodes of dysphoria. The episodes of dysphoria were dreadful. When in this state it was like the movie Ground Hog Day. I felt that events kept repeating themselves and I was petrified that either I had died and this Ground Hog Day thing was hell or that I had suffered brain damage as a result of the low blood oxygen levels I had sustained. Even writing about it now, weeks later, I still vividly remember how petrified I was. At this stage there was a concern that there could have been something wrong with my brain so I had a full body CT scan. As we now know the scan revealed no problems with my brain and also showed the wonderful shrinkage of the tumours. I was started on some drugs to control the hypomania and also given sedatives to keep me calm until the drugs kicked in. The rest of the week is a blur and I only have vague recollections of the week. I remember being so tired that mum and a nurse had to feed me! I basically slept the week away.
Again I will plagiarise from Wikipedia to give a definition of hypomania for those that are interested (some of the people that spent any time with me during this period will probably laugh at some of this). Hypomania is a mood state characterized by persistent and pervasive elated or irritable mood. People with hypomania are generally perceived as being energetic, euphoric, overflowing with new ideas, and sometimes highly confident and charismatic, and unlike full-blown mania, they are sufficiently capable of coherent thought and action to participate in everyday activities. One in the state of hypomania might be immune to fear and doubt and have little social inhibition. They may talk to strangers easily, offer solutions to problems, and find pleasure in small activities. However, a large number of hypomanic episodes can be dysphoric. Subjects can be hostible, irritable, and in some cases, rageful. They may make poor choices and display little to no sympathy for other's emotions. A hypomanic episode includes, over the course of at least 5 days, three or four of the following symptoms, depending on whether the predominant mood state is elation or irritability:
* inflated self-esteem or grandiosity;
* decreased need for sleep;
* being more talkative than usual or feeling pressure from within the thought process to keep talking (i.e., cannot stop until the story is done);
* flight of ideas or the subjective experience that thoughts are racing;
* easy distractibility and attention-deficit (superficially similar to attention deficit hyperactivity disorder);
* increase in psychomotor agitation; and
* steep involvement in pleasurable activities that may have a high potential for negative psycho-social or physical consequences.
In the hypomanic state, people may feel like they can't slow their mind down, and that all these speeding thoughts are amazingly perfectly crafted.
Luckily they were able to give me medication to control the hypomania and life felt much better and got back to normal. My cell counts slowly made it to full recovery (white cells, red cells and platelets) and I recovered from the infections. I no longer needed my daily cocktail of transfusions and IV antibiotics. I was finally ready to come home after weeks in hospital on Friday May 25th.
I spent 10 lovely days at home. I was very tired and my muscles were very weak to start with. As the days progressed though my muscles became stronger and I was able to do more with Arielle and Tiernan. I had a lovely time just being at home and enjoying the company of Cam and the kids. I had some visitors during this time and also had a few little outings which were fun. I managed to pick up a bit of a cold and last Thursday I had to have another CT scan just to make sure everything was ok (I had started night sweats again). We had the wonderful results that both tumours are almost completely gone. It was the most fantastic news I could have received. I still had to have the chemo but at least now I knew I really had a chance to beat this cancer.
So on Tuesday night I came back into hospital and on Wednesday I started on the BEAM high dose chemo. The BEAM treatment involves
* Carmustine on day 1 – this drug is in an alcohol base as it won’t mix with saline – it made me revoltingly sick but thankfully was only for one day
* Cytarabine and Etoposide on days 2 to 5 – I am feeling fine on these drugs but that is not surprising given that these two were also in the ESHAP regime that did nothing for the tumour – no need to worry though as the tumours are much smaller now so these drugs may now work on them
* Melphalan on day 6 – this is supposed to make you feel very, very nauseous and is apparently one of the worst chemo drugs to have. Luckily it is only one day though and I can have Phenergen to knock me out for most of it!
So finally I am up to date on my blogg. Wow what a mammoth effort this has been. Hopefully now I will manage to update it a little more regularly.