Tuesday, 19 June 2007
I look like a balloon
I had a few dramas with my heart over the weekend and I had to be connected to a wireless ECG machine for a few days. It was such an amazing little machine. All the dots were connected to me and I had this little box that transmitted data wirelessly to the Coronary Care Unit so that they could closely monitor me. The whole medical world continues to fascinate me. I had been having chest pains of various sorts for a few days and then on Saturday night I had some more and they did a blood test. When your heart goes into distress it releases enzymes into your blood. The blood test results on Saturday night showed those enzymes in my blood which is why I had to be monitored. It was quite funny actually as on Sat night I went to bed at 8pm. At 9.30pm Dr Hill walked into my room and turned the lights on and started talking to me about the problems with my heart. At this point I did not know that my ECG from earlier in the night was not normal and I did not know about the blood test results, so I was quite confused about what was going on!! I had to get my nurse to reexplain everything once I woke up a bit more!!
I am now off the heart monitor as the pains have stopped and the ECGs are now normal. I have a little fluid around my heart but it is nothing to be concerned with as it should fix itself as I get better.
Unfortunately the diarrhoea has hit pretty hard again and I have a sore behind again. It is not as bad as last time though which is good. This time it seems to be my mouth and throat that are causing the most pain. Even swallowing water feels like razor blades. I am on an oral anaethestic that eases a little of the pain. I also resorted to having a Fentinyl patch and that takes the edge off everything.
I am on day 7 today and my counts are still 0 so I am not sure I will be able to match the last count recovery of 8 days. I suspect this time it will be around the 10 to 14 days.
The bronchoscopy results did not show any signs of infection in my lungs. Once I have recovered from this stem cell transplant I will have another CT and PET scan and hopefully the results will be good. Kerry said not to worry about any of that at the moment and to just focus on recovering.
My moods have been very up and down lately with the down part usually the morning and the up is the afternoon. When I first wake up in the morning I usually feel miserable due to everything hurting or just feeling off. It then takes me hours to have breakfast and get myself out of bed and showered. It is usually this time of day where I feel I cannot do it anymore. The next thought is always realising I don't have a choice - the chemo making me feel like this has already been given so I just have to ride the wave until I recover! Poor Cam then gets a phone call from me moping about how miserable I feel. He has been great with letting me vent all of my frustrations with being sick and then managing to turn my mood around a little with antics that the kids have done. We have had some really great family visits and that always helps my moods. It is hard to feel sick or miserable when Tiernan and Arielle are about. Poor little Arielle has bronchitus so we cannot see each other for a few days.
Enough of my rambling for the night - it is time I went to sleep. This is the first time in days that I am awake after 9pm!
Thursday, 14 June 2007
Just poldding along
Yesterday I felt pretty sick for most of the day. I spoke too soon about not having any side effects of the Malphalan. Diahhorea kicked in with a vengence and I felt revolting. Then my blood pressure started dropping and I got a small temperature. Bloods were taken to see if I have any infections and I was started on some antibiotics just in case. As I was having a lot of chest pain they did a CT. Unfortunately the results showed something in the area where my original tumour was and it was larger than what was there last week. As it is between my lung and aorta they do not know if the tumour has started to grow again or I have an infection in my lung and it is causing the tissue to swell. To try to get a better idea I had a bronoscopy this morning (small operation where they put a fibre optic tube into your lungs). The doctor could not see any obvious problem with my lung but he took some samples that will be sent off to pathology an if there is an infection then that will tell us. If it is not an infection then unfortunately it looks like the tumour might be growing again. I will be having a PET scan next week to help them work it out. So we are playing a waiting game now. Other than providing piece of mind, a definitive answer probably would not change much as I am already on the appropriate anti biotics if it is an infection and if it is the tumour then there is nothing else that can be done until my counts all recover and I am better.
Tuesday, 12 June 2007
Nowhere near as bad as I expected
Today I faired a little worse but still in the scheme of things pretty good. I woke feeling great but then took small slides all day. At 11.30am I received my stem cells back (they are transfused into me just like a blood transfusion). This time I stayed awake for it - after they gave me all the drugs that usually put you to sleep (just in case you react to the storage solution you need to have pre meds), I got out of bed and sat in a chair determined to stay awake for it. And I was rewarded - this time I got to see the scientist bring in the big steel cylinder on wheels with the stem cells stored safely inside. Then there was another machine where the water was warmed to 37 degrees exactly. Then once everything was set up and ready the scientist took my stem cells out of the steel cylinder (it looked really cool as steam billowed out when he opened the lid - such a bummer my brain did not kick into gear and get the camera out).Then he put the bag into the water to thaw out and once it thawed out, it was put up on my drip pole and away it went.
Today my counts are on their way down White cells 1 and HB 100 and they will inevitably drop to 0. So we will have to wait and see what the week ahead brings but so far I have fared very well.
Sunday, 10 June 2007
For Brisbanites
Going along nicely
Today I have had a good day too other than feeling tired. Cam came and visited this morning and we had a nice morning together. Tiernan is sick with a cold so I will not be seeing the kids until he is better - I miss them so much. I contemplated seeing them and making sure Tiernan did not come to close but figured that would be impossible. Today is mum and dad's anniversary so mum, dad, Nat, Ben, Tim and Jess are out for lunch celebrating. Ben is going to pop in after that to say hi. Tonight Amanda and Kylie are coming in for our Sunday night chin wag. I am planning on spending as much of tomorrow as possible tranquilised. Doctors and nurses alike have warned me that tomorrow's drug is dreadful. Hopefully it wont be as bad as they say.
I am currently on the lookout for ideas. What for you ask. One of the positive outcomes of having had a hypomania attack was the ability to free my mind and have some creativity and I have been doing a lot of thinking lately (with my chemo and drug effected brain no less) and there are no services out there specifically to support mums who are diagnosed with cancer whilst pregnant or with young babies and/or toddlers. So I am starting up a charity. This charity is going to offer support such as babysitting so that the 'well' parent can visit the sick parent on their own, counselling for toddlers to help explain that a parent is so sick, counselling for parents to help them cope with the demands of a critically ill parent as well as a new baby/toddler, tip sheets for the sick parent on coping with some of the side effects of chemo, outings for the families on the times the sick parent is home, toddlers toys and DVDs to be kept in the 'cancer' wards of hospitals to help occupy visiting children. Where I need everyone's help is with ideas for fundraising. I am thinking of holding a charity auction dinner in October and would welcome anyone's suggestions or donations for items to auction. Natalie and mum are thinking of doing a walk from Bribie Island to Caloundra. Any other ideas are very welcome.
The other thing is the name of the charity. During my hypomania attack I decided that the logo for the charity would be three jellybeans - pink, blue and red. (Anyone with any artistic talents feel free to give me suggestions on how to put this together into a logo). The idea with jellybeans came from trying to explain to Tiernan that I was pregnant with him when I climbed the Harbour Bridge. We were at Circular Quay in Sydney and Tiernan saw people climbing the Harbour Bridge and he was amazed. I told him that when he was a tiny jellybean in mummy's tummy that mummy climbed the Harbour Bridge. Now we constantly have discussions about when he was a jellybean or when Arielle was a jellybean. I am not sure I really explained the concept well enough though as he has also commented about when he was grown up and I was a jellybean in his tummy. I think I will just leave it at that for the moment though as I am not going to have a birds and bees discussion with a three year old. The other reason two for jellybeans is that I just about live on them lately due to blood sugar problems and from childhood I have always related going to the doctors with having a Glucojel jellybean. So given all of this I was thinking of calling the charity either JELLYBEANS or JELLBELLY. Any comments would be greatly appreciated. I did think of Dette's Wish however I am conscious of the fact that we will probably have a website and trying to spell Dette's Wish over the phone would be too hard. So I want a name that is simple, easy to spell and easily recognisable.
Well that is all for now. It is ten to four and I still have to have a shower and change out of my pjs!!! At least I am holding up to my promise to keep the blogg regularly updated!
Friday, 8 June 2007
Finally an update
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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!!
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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.
Thursday, 24 May 2007
Quick Post I am exhausted
I cannot believe how tired I can be from just being out of bed! I also had my flu shot tonight. It did not hurt one bit - to the point I had to ask if the needle had gone in yet (it had)!! Someone on the ward has the flu and Kerry has ordered that everyone on the ward have the flu shot to make sure they don't get a flu breakout (apparently that happened years ago).
I had a little investigative operation yesterday on my bottom (I have lost all dignity now) and the results were all good. I do not have a fissure but instead have a very irritated skin tag which usually he would have removed however given my counts will be dropping with the next chemo he said I would be better to get it removed once this is all over.
I will be allowed to go home tomorrrow (yippee) and I will have 10 days at home. During this time I am to rest, rest, rest. I then go back to hospital on Tuesday June 5 and start chemo on Wednesday June 6. The BEAM will go for 6 days and then on Tuesday June 12 my stem cells will be put back in. I am likely to have no white cell (and therefore immune system) for about 8 days if my last experience was anything to go by. So my danger period for infection will be from Tuesday June 12 to Tuesday June 19. Once I make it through that it should be a smooth ride.
I still have not updated the blogg for everything that happened during this treatment cycle but I promise I will get to it.
Bernadette