This morning I had an eyelash in my eye. I looked in the mirror to take it out and was mortified to see that I had actually lost nearly all of my eyelashes. I am not even sure when it happened - they have all just gone!! My eyebrows have been diminishing slowly as well and there is not much of them left anymore either! Oh don't you just love chemo.
I am on day 12 post transplant and can report that my white cells and neutrophils have recovered and are now within normal range. My platelets are still pathetic (12 when normal is 150 - 400) so I am continuing to have platelet transfusions. I am still swollen like a balloon and my weight was 56.5kg yesterday. They gave me a big dose of Lasix and today I am 55kg. The fluid retention is revolting as my skin is so stretched that any movements hurt. Hopefully soon my heart will start working properly and get rid of the excess fluid. The diarhorea is still persisting unfortunately so I am quite sore. I have been resting a lot as I am just perpetually tired. I will be having another CT in about 2 weeks and that will tell us the status of the tumours and then Kerry will decide what to do next.
I finally decided on a name for the charity - it is "Mummy's Wish". I am currently in the process of registering the charity and doing all of the paperwork to set it up. We have sold quite a few entertainment books to get it going which has been exciting. The next project is procuring items for the charity auction that we will hold later in the year. This is something I feel really passionate about and it is such a nice feeling to know that I am going to make a difference.
Sunday, 24 June 2007
Wednesday, 20 June 2007
Yippee Counts are recovering
Yippee my counts are recovering - I am Day 8 today and my white cell count is 0.6 and my neutrophils are 0.26!!! Yeah, yeah, yeah!! I am feeling heaps better this morning as well. Life is just going to get better from here on. All of the prayers are certainly working.
Tuesday, 19 June 2007
I look like a balloon
I currently look like someone has blown me up like a balloon. I have a lot of fluid retention with my weight hovering around 53kg to 56kg which means I am carrying around 25% more weight than usual (45kg is my usual weight). My skin feels tight and stretched and all of the excess fluid is quite painful to touch. The reason for the fluid retention is that the chemo drugs put a lot of strain on your heart and it struggles to get rid of all of the additional fluids I am receiving - I am on 3 different IV antibiotics, IV potassium, IV magnesium, artificial feeding (TPN), albumen (a blood product), blood transfusions and platelet transfusions. So each day I am pumped with litres of fluids in addition to what I am orally consuming (lots because believe it or not even with all of the fluids being pumped into me I am constantly thirsty!!). So during the day I am regularly pumped with Lasix to keep the fluid retention under control.
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!
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
I forgot to mention on Tuesday's blogg about the huge number of stem cells that were collected in my second collection. You may remember that on the first collection they collected 17 million stem cells which considering they only needed around 4.5 million was pretty good. I asked on Tuesday how many stem cells had been collected on the second day and the answer was a staggering 50 million (yes I did confirm that it was 50 and not 15). So all up my stem cell collection was pretty amazing. As I did not need all of those stem cells for my two transplants, I still have some left in reserve in case I need them.
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.
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
Well I can very gladly report that the Melphalan drug I received yesterday did not live up to its expectation. I did have some very strong anti nausea tablets but I did not need any tranquilisers. The day was actually quite bareable. I felt a little off for most of the day and food did nothing to interest me but they day passed without event. I was even up for a visitor at night and Jane popped in for a chat.
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.
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
I forgot to mention one of the fundraising ideas I have already made a start on is selling the Brisbane Entertainment book. If anyone in Brisbane would like to buy one please let me know.
Going along nicely
Yesterday was a good day. Mum and dad came to visit in the morning and then I had some rest in the afternoon and then Jess and Nat came in to visit at night. Jess and Nat brought Chinese and some DVDs although we got too busy chatting to actually watch any DVDs! I felt well for most of the day. I was extremely tired though - last night I spent from 9pm to 10am this morning in bed!! Unheard of for me usually. This time I am not having Dexamethasone which is a steroid that usually peps me up and keeps the tiredness at bay. They think it was partly responsible for my hypomania so I am not having it this time. The good news is that now I don't need sleeping tablets to sleep (usually the dex peps me up so much I need sleeping tablets). Also the dex caused my skin to breakout so all round I am very happy I am not having it. For those who are wondering what role dex played in my treatment - it reduces swelling in the tumour and reduces nausea.
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!
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!
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