Making the Decision
Planning and Preparation
[17th January] [16th January] [8th January] [7th January]
[15th December] [8th December] [4th December] [2nd December] [29th November] [27th November]
[26th November] [24th November] [23rd November] [21st November] [19th November]
[18th November] [17th November (2)] [17th November] [13th November] [11th November]
[9th November] [7th November] [6th November] [23rd October] [16th October]
Tuesday 17 January
Today marked two years since mum left us. It is amazing the influence the event still has on both of us every day. There's not really a lot I can say except we miss mum terribly. I created an online memorial for her this year, located here. There are some photos of her in hospital and in the leadup to going to hospital. I still regret not spending more time with her then and it still hurts inside to know I didn't make full use of my time with her..
Tuesday 23 May
Today was Mum's 52nd Birthday. Miles and I celebrated it with a quiet dinner at her favourite restaurant in Melbourne called Langton's in the city. I'd like to just let everyone know how grateful Miles and I have been for their support. In the time since Mum died it's been a huge upheaval for us both, with Miles left in Melbourne to sort out the house and Mum's affairs while I have since moved back to Brisbane and am setting myself up there. I strongly urge everyone out there to donate to the Bone Marrow Donor Institute as Miles and I are continuing to do. Lastly I'd like to apologize for not updating the page more. I hope to continue to update it more in the future.
Monday 17 January
Today mum passed away at approximately 2:20pm. She was taken off all medication except some morphine to help make her as comfortable as possible, and then finally, her breathing tube was taken out. She fought valiantly until the end, and was surrounded by family and friends as she passed on. We appreciate everyone's support and help throughout this trying time and want to say thank you to everyone for their emails and phone calls. At the moment, although support is welcome, we'd appreciate it if it were kept to email only.
Sunday 16 January
We've organized for a meeting tomorrow with the doctors. They say they will make a decision whether or not to continue treatment. At the moment mum has GVH all over her skin and most likely in several organs as well. She is swelled up like a balloon from her cells leaking, and her stomach is extremely distended. She is still fairly stable though and our fingers are crossed. We shall post an update tomorrow after the meeting
Saturday 8 January
Mum's doctor had a conference today with Miles and myself as well as two close friends of Mum's. The news he gave wasn't good. Mum has continued to worsen in the past 24 hours and she is having problems in a lot of different areas. Her GVHD continues to be active and is increasing in some areas, and while they have drained two litres of fluid from her lungs their function hasn't improved. Her stomach is still distended and a CAT scan today did not reveal the cause of this. We were told to start making initial preparations in case of her death, and although there was still hope, to prepare for the worst. As the doctor put it, they're not at the end of the road for treatment yet, but they're getting there, and they haven't got any more aces up their sleeves. Miles and I are still hoping she can pull through and are with her as much as possible, although she is no longer awake for more than a minute or two each day. Here's hoping for a miracle.
Friday 7 January
First of all I'd like to apologise for the lack of updates. Lately things have been completely hectic and I can barely even keep track of which day of the week it is. Mum has now been in the ICU for four weeks now. The initial belief that she had a reaction to cyclosporin has evaporated and we are now left clueless as to why she had the fits. The doctors have found what areas in her brain on x-rays that look as though they were affected by a virus. Mum now has severe active GVHD all over her skin and also has GVH in her bowels although that looks to be clearing up. At the moment her lungs are our biggest concern. She has had a tube down her throat to help her breathing and has had it removed twice and put back in twice. In x-rays, there is dark shadowing around her lungs and it seems to be getting worse, although they are hoping that it is just sputum causing the fluid build up. We are unsure just how bad it is as the doctors don't know whether she has GVHD in her lungs or not. If she doesn't, and it doesn't continue to get worse they are fairly hopeful for her outcome. Thank you for your calls and emails of support as we appreciate them.
Wednesday 15 December
This is an update from Miles and Tim. Mum had a severe reaction to the cyclosporin anti-rejection drug after switching to its pill form. She is now in intensive care recovering from her reaction. She currently suffers from amnesia and an inability to remember things short term either. She is slowly recovering however, and we are hopeful that this is not a major setback. Thanks to everyone for their support. We will update when more news arrives. She is not receiving emails, nor can she take phone calls or visitors at this time.
Wednesday 8 December - Day 26
I'm pleased to report significant improvement in all directions of my recovery process. I'm now eating. It is a great joy, as the summer fruit is reaching its peak and I'm able to eat the most wonderful combinations of tropical fruit.
For example, I've just finished a bowl of mango and raspberries. Prior to that I had some Italian bread with some fresh avocado and tomato. For breakfast this morning, I ate organic orange, banana, raspberries, and my favourite snack, big slices of a 6 kilo watermelon that sits in the fridge in my room. This helps the fluid intact and is a pleasure to crunch on the big pieces. My overall counts continue to improve. Today's counts are:
I am gradually being weaned off intravenous medication and transferred to the oral version. The plan is to make two step improvements. Improvement, then consolidation, rather than to push myself too far, too fast. I am doing five exercise routines a day, walking around the ward, but still resting for significant periods as well. As I am no longer neutrapenic, and my recovery is going well, I am able to resume having visitors.
My best expectation of when I hope to be home is the 15th of December. I have very much appreciated receiving all the messages of encouragement through all these difficult times, and it is wonderful to be able to see so clearly the real potential for being about by the 15th, unless something unexpected occurs.
In the meantime, the Christmas preparations at home are continuing to expand. We plan to have a very small "at home" on Christmas day, to celebrate the joy of the season.
Saturday 4 December - Day 22
The last day was so incredible, that I thought I should record it so people can understand why I am unable to respond individually to e-mails, let alone initiate them. My sister Carolyn's admirable care-giving skills include note-taking, so between us we should get there. My eyesight is fuzzy, and hand-eye co-ordination not much better, so I have dictated this to Miles to put on the web page.
Diary of Friday 3rd December
The day began at 6am. I had a slow infusion of morphine at low levels during the night in order to keep on top of the pain, but still getting up to go to the toilet on a regular basis. First task - shower - long, slow, gentle water, to get some kinks out and freshen up, using only Dove beauty bar, not soap. Capable of standing and doing it myself. I have not yet had to use bed pans. Put lots of various ointments on, etc. Cleaned teeth thoroughly, with special paste for sensitive teeth. Various creams and lotions go on different bits, and I see how they are healing. The whole bathing process takes about 45 minutes. Stretched out back muscles, and did 10 minutes on exercise bike. Once complete, my reward is 100ml of Perrier on ice cubes. Then I chose the fragrance for the day for the aroma therapy - special thanks to Denise Claughton. Rested up and tried to sleep a little more before the cleaning activities began at around 7:30am.
The services are provided by Tempo, and they have complete division of labour. One person to collect yesterday's jug and glass, another to bring the next one (up to one hour later, but today we have actually been waiting for 3 and a half hours). Different people empty bins, replace paper towels, mop the floor, and clean the bathroom. I just mooch about, unable to do much. The plebotomist comes about 7:30 to 7:45 and searches for a place to take blood from. If I'm lucky, this will go straight forwardly, but there is one, Bo, who I refuse to have work on me, and we may have a little skirmish if she comes in. Despite repeated requests on my part for her supervisor to be spoken to, to get her off my case, this issue has not been resolved. She is rough with her techniques, and causes unnecessary pain. One time, she couldn't even get a vein after several attempts. In my book, not good enough for a professional. There is a big pool of them that do this task so it should have been sorted out easily after the four attempts I gave her before giving up on her.
During the day I am encourages to drink as much water as possible. It is all recorded at both ends, times and volumes. I am still carrying 3 extra litres of fluid so I'm now on Lasix by mouth, 120mg every six hours. Generally I have to go every hour and do 300ml (intravenously and drunk). This seems to be the most recalcitrant problem at present. I am off TPN for a few days to give the kidneys a rest.
Dressings are changed as requires early in the morning routine and I need to decide if I'm going to attempt to eat breakfast as the trays come between 8am and 9:15am. Usually my answer is no, although I'm trying little extras like Fruche. So things can be quite busy.
Then we wait for the first of the doctors to visit - usually my core two, Chris and Paul. They do an examination and try to see what changes are occurring from the direct observation plus records from the blood and urine samples.
Still concerned about the kidneys and a specialist is coming to visit to discuss temporary dialysis. Another infection in the catheter, the same bacteria that was there a week ago. Pathalogy is checking if this bacteria can grow in catheters, and if so, it will have to be replaced.
12 Noon - Two kidney doctors called. Spoke about the high Urea levels and the possibility of dialysis to remove it. Looked at the lines, said they'd bring the professor back in about an hour, and left. Infectious diseases doctor visited. There is definitely an infection in the hickman-catheter, the correct antibiotics are being used, but are not clearing it away. He recommends that the hickman is removed, and a new catheter is installed.
Message comes through that haemodialysis is to go ahead at around 3:30, and a catheter to be inserted in the groin. Because this is an invasive procedure, 10 units of platelets will be given prior.
2:45pm - Professor Thomson from Nephrology called in and decided not to do dialysis yet. By this stage 5 unites of platelets had gone through. The other 5 were stopped. Decided to push the fluids through as much as possible, both IV and orally. Hold off on the diuretics. The staff wanted to re-introduce TPN, but the professor wants to hold off for another 24 hours to give the kidneys another chance. Everything happens at once when sedated and platelets going through.
3:20pm - Change of plan. Now to have the second 5 units of platelets. Chris will remove the hickman-catheter and insert a venous line. They will book theatre for tomorrow to insert a picc-line in an arm, in order to give fluids. Chris and Paul have been talking to the renal chaps, and this appears to be plan B. The Hickman needs to come out to allow the infection in the blood to clear. The ongoing infection can be affecting the liver and kidneys and also using up any new neutrophils.
3:45pm - Two infectious diseases doctors called. They are consulted when changes in antibiotics are needed.
4:30pm - Cyclosporin reduced from 21 to 16mg per hour. Weight up to 77.1kg.
6:00pm - Chris came and removed the hickman-catheter, a portion cut off and sent to the labs for tests. He then inserted a catheter into the right hand for the drips to go through. These procedures were done in the room. Have to wait until a gap between operations for the picc-catheter to be inserted into the left arm, as this has to be done under sterile conditions. They are hoping it will be tonight, as they do not like cyclosporin running through a small vein for too long as it can burn.
6:50pm - Given three 40mg Lasix tablets to reduce the fluid load. Hoping for a call to theatre by 8:30.
9:35pm - Down to theatre for the picc-line to be inserted. It all took ages to organize, and it was not all completed until 11pm, with Carolyn waiting outside surgery for me a real blessing, but hard on her with no food or rest.
11:00pm - finally back in the room. Blood leaking out of the tap on the right hand, and also out of the picc-line on the left arm. Change the bed. Try to get into new clothes. Didn't we have fun last night?
Midnight - More lasix, and more observations. I finally got settled for the night, however I had decided not to take any more morphine or sedatives and found it hard to let go of the day's events and activities. I kept waking up and thinking I needed to write a research report (which I have now completed in fact).
And at the same point in the middle of the day the blood results were brought round and were:
Counts Thursday Friday Saturday
Hb 90 100 111
WCC 0.35 1.92 6.18
Platelets 9,000 10,000 14,000
Neutrophils - 1.5 5.44
As this is being written on the morning of Sat 4 Dec I have just been told by the nephrology registrar that the lasix dose is to be increased to 80mg every 4 hours i.v. and extra fluid to be restricted to 1.5 litres per day. I am also to try drinking cold Lucozade (which Miles has brought in for me).
Thursday 2 December - Day 20
Sharyn has had three terrible days. The GVHD has played havoc with her liver and she now has jaundice. The antibiotics for the infections have affected her kidneys. Today, she was taken off TPN and antibiotics and antifungals were changed to ones that are more kidney friendly. Fluids have been reduced to give her kidneys a rest.
Her mouth feels like "two mouths jammed into one". It's very difficult for her to talk as well as swallow. All of this has resulted in quite intensive nursing meaning that she is unable to reply to emails or write the updates herself.
However, on the positive side, white cell counts are up to 0.35 and neutrophils are about 0.20. Hopefully we'll see some improvement over the weekend.
Monday 29 November - Day 17
The last two days have passed in a blur, almost like in a state of hibernation, as my body pours all of its limited resources into the recovery process. Since I still have infections in the mouth and throat, the healing of those is using up all the extra white cells that are being produced, so my counts are not rising as quickly as they otherwise might.
Counts for today:
I'm presently asleep more often than I am awake, and when I am awake it takes the greatest amount of effort to perform the simplest tasks of personal maintenance. I am not in pain, just weary, and am able to concentrate. I am taking insulin now as we work on getting blood sugar levels correct following previous chemotherapy, so I have samples taken every four hours, and then a determination is made on how much insulin I need. I had a chest x-ray this afternoon, and tomorrow I'm having an abdominal cat-scan to check on the state of the liver. The spleen is already significantly reduced from the size pre-transplant. Eating is a challenge, and I manage something three times a day. My mouth remains the last outpost of discomfort. The care-giving continues to go well, and I enjoy visits from both my boys each day.
Saturday 27 November - Day 15
The counts continue to improve. The latest counts are:
Hgb WCC Platelets Neutrophils
104 0.13 14 0.05
(WCC nearly double from yesterday)
The latest issue is managing the level of blood sugar, as it is now at 27%, up from a healthy person's roughly 5%. Consequently I've had several injections of insulin to bring blood sugar down to normal levels as it makes me very tired and cranky (just ask Miles about his shoelaces) and a gives me a great thirst and hunger.
The GVHD of the skin continues at full throttle but the hydro-cortisone treatment is really helping. The nurse puts on a rubber glove and then applies the cream all over the diseased looking areas four times a day. The pins and needles and burning sensation in my feet are also connected to GVHD. And are also benefiting somewhat from the treatment.
I had another dose of anti-biotics and anti-fungicide today which requires extensive preparation to prevent rigours, so that took another 4 hours out of the day. But we were able to prevent the rigour activity. The subsequent overheating causes sweatiness and discomfort and that makes a cool shower a necessary element in the process.
I'm still eating very little. Mainly because eating takes so long with so little reward, or even no reward at all, as with breakfast, when I lost the lot within five minutes of eating.
I'm having longer periods of lucidity during the day and it is good to have my mind back (it sure is! - Tim) I've missed it. Some people have commented on capacity to keep these updates going, even when I've been feeling miserable, and I would like to thank Tim for his great dictation skills and his commitment to maintaining the web page in its best condition. Sterling job Tim. (I think so too - Tim).
Thank you again for all the e-mails of support that keep coming in. I read every single one and appreciate them all. Today we looked at the statistics for the web site. The most common origin of people looking at it was Australia, followed by Virginia, USA, followed by New Zealand. Special thanks to Virginia, USA, we're not sure how so many of you are coming here, but thanks anyway.
Friday 26 November - Day 14
Thanksgiving has not been a holiday we've celebrated since we left the United States in 1982, after living there for 3 and a half years, but from now on we will be celebrating it again, as on thanksgiving it was confirmed from the skin biopsy that the rash is Graft vs Host Disease. So even though the numbers have not come in yet, the flourishing nature of the rash indicates that today's set of figures should show what is happening in my system, which is that after 13 days the engraftment process has begun. To offset that excitement, I have a new set of aches and pains on the of all the existing ones. My mouth has now ulcerated and I able to take morphine for it as frequently as I wish. The rash covers most of my body and I am taking steroids intravenously and topical cream for it. The heels on my feet burn when any weight is applied to them, from some kind of tissue disorder within them. No treatment for this.
I understand that this point is generally the lowest point on the misery scale, and that in a few days things should start to improve. I certainly hope so.
We're expecting a short filming visit from the Good Medicine program this afternoon, as they want to see me at my worst, to give a true rendition of the whole process.
Blood counts just in for today:
HGB WCC PLATELETS NEUTROPHILS
85 0.07 14 0.03
[Tim: Here are the photos taken in the afternoon when the Good Medicine crew arrived]
Wednesday 24 November - Day 11
Another fairly crummy day with bad rigours when I received another dose of platelets. That took out most of the day. I also had a skin biopsy taken to try to determine the source of the skin eruptions I have over a lot of my body. This involved a little operation with a stitch. I also have a lot of bruising and my skin condition is generally unattractive. I am getting used to my shaved head and not so bothered by it now.
I had my last dose of methotrextrate tonight. It acts as a preventive measure against GVHD and requires ice to be held in the mouth for close to an hour. Hard to do when the nose is clogged up, but with my faithful care giver Carolyn, feeding me small cubes of ice I managed. I've also had two doses of Lasix, a strong diuretic as I'm still carrying two and half kilos of fluid. So quite a busy day.
I am on TPN now as I have little energy or interest in eating. I am still managing some fortified drinks as a supplement.
My counts today are:
So I'm still neutrapenic with no sign yet of engraftment. It's just wait and watch.
I enjoy receiving emails and mail but am unable to respond individually at present.
Tuesday 23 November Day 11
The last two days have been pretty crappy. Each day Ive had restless nights followed by a short period of lucidity in the morning, which is then destroyed by strong cases of rigour, followed by fevers. Of course there is medication to deal with these things as well as practical ways of quickly heating and then cooling the body. The cooling involves changing into shorts and T-shirt, and ice packs being put in each armpit and groin area as I lie with my arms out and my hands curled above them. One of the nurses commented that I looked just like a big kangaroo lying out trying to cool itself. I seized this and made further paw movements, kangaroo noises and silly kangaroo jokes for the next hour. Cooling up when undergoing rigour, involves heated towels being placed all over the body followed by several blankets plus a special space blanket to reflect the heat. Im also given pethadine in quite large doses to counteract the impact of these rigours which can at times be most disturbing. The fevers are lived in a blur as once the temperature goes over 38 degrees C, mental faculties close down very quickly. The overall effect of the chills and rigour is to chew up, very quickly, the blood and platelets I am given on a regular basis. I did manage 20 minutes on the bicycle yesterday morning, but no exercise today. Naturally enough, under these conditions, my eating capacity has slumped and today I will be given TPN (meal in a bag), as I am unable to eat enough for my bodys nutritional needs at present. Each day brings more tests; Chest X-ray; Echo cardiogram for fast beating heart, which was resolved with extra potassium and magnesium being given intravenously; four hourly checks of vital signs. Temperature level, oxygen level, pulse, etc.
Today I took the plunge and had a number 1 cut administered on the remaining hair cover. It was not an unpleasant process. So I am now checking out my various hats for comfort and style. My snowboarders beanie is perfect for when I have the chills and I have several other large soft hats for trips out, e.g., to the chest X-ray today. Fluid retention continues to be a problem and my face is rather puffy from its effects. Another round of the dreaded Lasix is due after the next delivery of blood.
I had an unexpected pleasure on Monday night of a brief visit from Julianne Brown, who underwent a bone marrow transplant for Myelofibrosis at the Royal Melbourne Hospital four years ago. She enjoyed my room which has new pictures added almost daily. It was good to see her even if it was only for a short period.
I remain optimistic and thoroughly enjoy the e-mails, cards and gifts, that have come in the last few days. Thank you very much.
Sunday 21 November - Day 8
The last thirty six hours have been, frankly, a misery. I've had two sets of cold chills followed by fevers of 41 degrees Celsius with delirium and digestive problems. As well, my hair is terribly itchy and is coming out in handfuls. It is at times like this that one is so thankful for a care giver. At one point when Miles was sitting with me I jumped out of bed and headed straight for the bathroom. He was able to dash to rescue the IV pole and unplug me from the wall, following me with my lifeline. Once in the bathroom I fell asleep on the toilet and had to be rescued by the nurse and taken back to bed. I remember nothing of these incidents.
This morning I feel a little better and my temperature is down to normal but I still have discomfort in quite a few places including light sensitive eyes.
Finally, Tim has uploaded some photos from the hospital:
Friday 19 November
Counts today are:
I had a transfusion of platelets last night with no side effects (it can cause rigour or cold shakes).
Issues are comfort ones rather than pain or fever. My throat and mouth are incredibly sore and I gargle with a local anaesthetic and occasionally swallow it to ease the throat before eating. But I got a better night's sleep even though I still have to go to the bathroom every hour or so. I made sure I read a relaxing book before sleep; one about Impressionist Gardens so I had nice images in my mind. Also I tried to visualise a huge, cold, snow capped mountain like a big ice cream cone (Mt Egmonst in New Zealand) to help the throat.
The Pilocarpine has worked well in restoring saliva, sufficiently so that I am no longer taking it.
My visitors are restricted to immediate family at present while the risk of infection is so great and we are being meticulous about hygiene and mouth care. So far, so good with no fever as yet.
I managed fifteen minutes of light exercise this morning, stretching and on the stationery bicycle.
However every area where hair grows is now itchy, a good indication that it will soon fall out and I'll sport the bald look for a few months. Probably not in public though.
Miles brought in an interesting newspaper clipping that his German host family sent over. Last year when he and I were on a train from Munich to Stockholm the train stopped unexpectedly at a little station in East Germany for two minutes. In that time my suitcase was stolen from the only first class carriage. I heard the wheels and jumped up but it was too late as the train was already pulling out. Great consternation followed as you can imagine as I had a lot of stuff for my three month trip. But the worst was losing all my undeveloped film from the previous five weeks including garden tours of England. Also, I had great difficult in getting the insurance company to pay out and received in the end only about two thirds of the value of the loss.
The host family were very helpful and arranged for a piece to go into the local newspaper of the area in an attempt to get the film back. It told the story of an "ice cold thief" who stole from the train. It described me as the Marketing Manager for the Australian Rowing team (not quite true but they were intrigued by my business relationship with the Oarsome Foursome) going to the Sydney Olympics and said there were photos of the crew at European regattas which were irreplaceable (true). Unfortunately the story didn't get any result despite offering a 250 mark reward for the rolls of film.
Thursday 18 November - Day 6
My counts for today are:
The implications for these numbers are :
low Hgb means no energy and the probable need for a transfusion tomorrow.
Such low platelets leads to bleeding from all soft tissue orifices. Because platelets live for only 24 - 36 hours these transfusions are likely to be daily now until well after engrafted.
The low white and neutrophil counts are at the edge of the machine's capacity to measure and for practical purposes are counted as zero. No more will come until engraftment. Then we will watch with bated breath as the numbers gradually climb.
The comfort level of my body is declining with a persistent sore throat (although not yet mucositis or ulcerated, so no pain medication beyond local anaesthetic mouthwash is required).
Eating is more of a challenge as the medications to control nausea, vomiting and diarrhoea are only just coping with occasional break downs. With these factors plus a sore mouth only cold, moist food has any appeal at all. I am taking supplements in the form of drinks called Fortisip and Resource. Neither are especially palatable as they are obviously artificial. But I usually can manage five tetra packs a day. Seven would provide all my nutritional needs so with a bit of food and the supplements I'm achieving sufficient that I do not yet need to have the meal in a bag or TPN.
I have been too weary today to attempt a Scrabble game but once I get my next haemaglobin watch out Carolyn who managed to beat me last time when I had to have a nap in the middle which gave her the opportunity to create a very high scoring word while waiting for me to wake up.
A big thank you to those who have been sending emails and cards. The organic navel oranges have been the best food gift so far. The procedure for preparing them requires Carolyn to scrub them, then peel in such a way that the peel does not touch the inside. I then can eat the inside with minimal risk.
Yesterday was the weekly chest X Ray and the orderly did not follow the detailed instructions for speed and isolation. The nurse even scrubbed down the wheelchair as no one knew who had been in it previously. However I got stuck in a construction zone for about ten minutes much to my annoyance and concern and subsequent two hours of lung irritation. Construction dust is a big no - no but the Alfred is undergoing a major renovation and it is difficult to avoid occasional passage ways which are exposed. The orderly dropped me off even though I was high priority and was out in three minutes. The orderlies then did not answer their phone calling for another one for at least five minutes. In the end Carolyn and I got together and managed to make our way back to the ward.
I had an unexpected telephone call yesterday from a woman I went to school with forty years ago. She had seen the piece on the Today show and knew from a school reunion (150th year) that I was not well. So she tracked me down through the television channel and then the hospital. She has kindly offered accommodation for the rowing at the Sydney 2000 Olympic Games as she lives close to the rowing venue at Penrith Lakes. So that was an unexpected bonus and lovely to catch up with someone after so long.
A friend has obtained a tapestry holder for me and after much struggle and brute force of the two of us we managed to get my half completed tapestry on to a frame. This will improve the outcome enormously as well as make it easier to work.
I woke up this morning to a beautiful clear day with hot air balloons over the city; a very inspiring view indeed. One day at a time is the motto here.
Wednesday 17 November, late afternoon
I am doing really well. My white counts are sitting just above zero. I thought I would hit zero today but it was 0.09 and the neutrophils are 0.04. Damn!
My platelets have dropped to 11,000 (normal range 150 - 400,000) and I'm about to have a platelet transfusion. Because they live for only a day or two I will need these every couple of days from now on until the stem cells start production.
Of course I am optimistic that the mighty forces of Russell's record breaking 8.3 million stem cells will begin earlier rather than later, but we just have to take it one day at a time. I am noticeably weaker and even allowed Carolyn to beat me at Scrabble today. I have to take a nap morning and afternoon. Fortunately this is one of my favourite pastimes so it's no bother.
My mouth is very sore and eating is a trial but I can manage so long as it is cold. Hot food makes me throw up within a minutes with relentless reliability.
Wednesday 17 November - Day 5
I'm continuing to do well. I'm fully neutrapenic now, i.e. no white cells being produced by my system. So I'm now in full isolation mode. It's just a waiting game now while we wait for the new stem cells. I am very prone to infection during this period, mainly from stuff already in my body but previously dormant.
I am still having intermittent doses of chemotherapy as a prophylactic measure against Graft Versus Host Disease and while this is being infused I keep ice in my mouth to reduce the threat of mucositis. I have this every 3 - 4 days now. Other than that a lot of medication is to do with managing my digestive system and reducing the impact of the toxic waste as it passes through. I dream about food, and about being able to go to the fridge and get my own food at my own pace and eat it without a sore, inflamed mouth and nausea.
I haven't yet lost my hair although it is expected any day now. Mainly I face minor comfort issues and making sure I get enough rest and light exercise. The days seem very busy as the room is like a railway station especially in the mornings with various staff coming in and out. Separate people do parts of a job, for example one comes to collect the old jug and water glass, another to being in the new one; one staff member empties the rubbish bins, another cleans the floor.
I have started playing Scrabble with my sister which I enjoy. A friend sent in an aroma therapy kit yesterday so I'm enjoying lovely smells. My friend Anne bought a new dog yesterday and he was taken for a walk in the park opposite my room so I could see him, at least with a distant view as I will not be able to touch pets for some months yet. Then Carolyn saw him in her car when she went down to the chemist to collect some photos so was able to report fully on how beautiful he is (an apricot poodle called Hardy, already six months old).
Miles and Timothy are still deep in exams so there will probably not be any photos go up on the web site until they finish at the end of this week. We have lots so will pick out just a few interesting ones.
Saturday 13 November - Day 1
My wonderful cousin Russell has performed above and beyond the call of duty. Over 8 million stem cells were harvested on Friday and transfusion began at 6.20 pm and lasted until 7 pm.(Two million were required)
We had a wonderful ceremony in the room. While I was away having my final TBI my sister prepared the room by taking out as much as possible and bringing in supplies of cold sparkling drinks, all non alcoholic from Perrier to apple juice and a few nibbles to eat.
The television crew had filmed most of the TBI then came and set up in the room to take as little space as possible. I got back from TBI about 5.40 pm and gradually the room filled up with my sons, sister Carolyn, Russell and his wife Ming, my friend Anne, nursing staff, TBI staff and doctors while we waited for the precious package to arrive.
The crew filmed various bits of the celebrations and chat amongst us and the start of the process showing the precious fluid going through the tubes (unfiltered) and into me. Once they had everything they and the nursing staff left and we all relaxed a bit more. Then we had a short prayer ceremony. I asked Anne to read the beautiful prayer Natalie and the sangha had created for me and we all sat quietly and listened and thought about the miracle we were witnessing.
It was very moving.
Then everyone packed up, went home, I had a few quiet moments with my precious sons then a quiet evening and early to bed.
A copy of the prayer follows so you can read it if you are interested. It is not addressed to a name.
Thursday 11 November Remembrance Day - Day -1
First, a thought of remembrance for my father who died twenty years ago this month as a result of a disease he got in the Second World War. I always remember him today and felt his presence strongly when I woke this morning. In Melbourne 11 am was commemorated by a military fly past and ceremonies. There are so few left from WW1 now but we still remember their sacrifices and those of all who fought in wars for us.
On a personal note I was struck by the contrast between the awful slaughters of the World Wars and their casual disregard for each life and the way it is now possible to spend so much time, effort and money on saving this one humble life of mine. I wept for the futility of human aggression and territoriality that causes such dreadful acts.
So my day began on a sombre note which remained an underlying theme as I was reminded of Remembrance Day Celebrations and people wearing poppies.
However TBI won't wait for anyone's metaphysical machinations and at 7.50 am it was off for session three of total body irradiation. I shall describe the procedure a little as it was fascinating to me and a sterling example of questioning and creativity. Someone sometime had asked questions about how radiation affects the body in different ways depending on the depth of the bones and pondered if they could improve the treatment. Now obviously you can't change the person you're dealing with but you can add to them.
What they've found (and excuse my lay person's explanation for which I make no claims as to absolute accuracy) is that they can reduce the amount of radiation given by about half if it is evenly spread over the body. To achieve the even spread they had an extensive measuring session with me previously and came prepared with various bags of rice, heavy gelatine sheets and firm plastic shapes. They proceeded to fill up all the spaces around my curves with these so as to create as close to an oblong as possible.
It takes about fifteen minutes to do it once they have it right, a little longer the first time. There is quite a bit of weight which then holds me completely still but is not uncomfortable. I then lie still for twelve minutes while the radiation occurs and the process is then reversed for the other side. In the mornings they do me lying on my side and in the afternoon I lie flat on my back. They have a tape and CD player and I take along my choice of music for both the preparation and for the time while I am being radiated and must be in the room alone.
I have tried a range of music. One sent me to sleep it was so relaxing. For the first two times I went I took an antihistamine as a light sedative ahead of time as it can be an anxious experience but I found it quite possible to achieve a meditative state and be quite calm for the required time.
In total I will have six sessions of TBI and by the end of that and the chemo therapy should be no longer able to produce any blood - neutrapenic is the term they use here to describe my state, which is based on having nil or very low neutrophils. I have a chart on the wall which plots my plummeting blood counts. To give you an idea of how quickly they drop these are the changes from 6th Nov to 11th Nov:
Haemaglobin: 110 92
White cells 16.08 5.25
Platelets 80 52
Neutrophils 14.18 4.95
I am still taking many different kinds of medications - up to five litres of fluids a day into my lines (plus what I drink) so the bathroom is a very familiar place and I have learned how to awake, reach for my electric plugs, disconnect and catch them, grab my pole and drive it to the bathroom in a matter of seconds which is sometimes all the warning one gets especially from Lasik (a drug to encourage the fluid to move quickly through the body and thereby protect the kidneys). There are many drugs to counter the side effects of the main medications so I feel like a full bore chemical factory at present (with a similar toxic waste output as well!!)
Later in the morning I had a troupe of fourth year medical students in for a visit as part of their training in examination procedures and clinical diagnosis. I simply had to say that I was an executive working long hours who presented to my doctor with fatigue and chronic diarrhoea (actual situation at time of diagnosis). They were given factual information if they asked about a particular issue. It is clearly a painful learning process for them and their state of current skills gives lots of room for improvement. None of them appeared to have any clue about my diagnosis and the poor unfortunate who had been chosen to do the first examination and subsequently present the case confessed to my sister outside the door while waiting for the others to take their turn he didn't have a clue and was very nervous about it. She told him she was unable to put him out of his misery as she knew she wasn't allowed to spill any beans. Unfortunately I didn't get to hear the subsequent presentation on my situation.
I was surprised that while they all looked all around the room while they were waiting none of them seemed to notice the sign above my bed which says Clinical Haematology - Bone Marrow transplant, or the chart on the wall of my blood counts which has handwritten my diagnosis of myelofibrosis. Too self involved with their own nerves I suppose not to see the obvious clues. It provided me with some good entertainment though.
My sister Carolyn, is a good care giver with a quiet, confident manner. She reminds me at regular intervals of the need for swirling with saline solution, sucking ice and water (my salivary glands have stopped functioning so eating, swallowing and talking are difficult), breathing deeply and coughing regularly to keep my lungs clear, and taking my exercise of walking around the ward. She fetches and carries when required and does my personal laundry at home. At present she is coming from 10 to 4 as I am away at TBI before and after that, and one of the boys comes at night. But later when I become sicker she will come for longer.
I am surprised to find my horizons have narrowed. I don't seem so interested in the messes of the outside world and rarely watch the television. I've read only today's paper since I've been here. But my days are full and busy or else I'm sleeping so the time passes quickly. I love my view especially as the sun sets over the city and never feel bored. I enjoy looking at all the wonderful pictures on the walls, many that friends and family have sent. I remain in good spirits and am managing the inevitable physical challenges on a day by day basis.
Thank you to everyone who has sent emails, cards and letters. It means so
much to me and to Miles and Timothy to have your support.
Tuesday 9 November
One full day of chemotherapy got through! My system has a healthy approach to the poison coming in to it - aggressively get it out. So I've had to learn how to move very quickly with my pole and wires and cords to get to the bathroom in about 20 seconds. I did suck ice all the way through which is supposed to help reduce mucositis. Had some very strange and vivid dreams in the night no doubt triggered by various medications. It was like watching old videos that have been cut up and reassembled in random order and then played at fast speed.
I'm not having any deep and meaningful thoughts about this - it seems that the physical exertion of the process takes up most of my energy. The music is a life saver as I can just relax and listen to something while the stuff is going in.
Thank you to everyone who has sent emails, cards and letters. It is enormously encouraging to receive them and I hope you'll understand that I don't have the energy for personal replies.
Sunday 7 November - Day -6 from transplant
Well it's all systems go now. The lung has not fully inflated but has improved from yesterday and it's not quite so painful. I'm also doing deep breathing and taking lots of medications.
I'm fully hooked up to the IV system now and have to plan all movement to be as efficient as possible as I can no longer jump up and get something I want.
I had one reaction to the atgam of chills and shaking but it was soon fixed with a shot of pethidine. It is marvellous when you're feeling wretched that a nurse can come, put in some fluid and in five minutes the worst of it has gone. From being chilled to the bone I am now hot with a raised temperature but not feeling too bad. However things can change very quickly as I've found.
The first actual chemo goes in at 8 am tomorrow and we are fully prepared with ice blocks and shaved ice as they have found that if you can keep the mouth iced for the duration (about an hour) it reduces mucositis.
Saturday 6 November - Day 3 in hospital
The last week went by in a flash, filled with pleasurable activities with family and friends. Gaye came down from Sydney and we spent Saturday morning at the Prahran market buying delicious things to eat including mangoes, strawberries and the first cherries of the season and beautiful flowers (paeony roses and water lilies). This was followed by an extended visit to Borders Bookshop where the credit cards got a good workout. We both bought books and CDs in great piles. I chose some light reading to bring with me and some more inspirational music to add to the wonderful collection people have given me. As I write this (at 3 am, but more of that later) I am listening to Voices from Heaven with Cecilia Bartoli, Andrea Bocelli and Bryn Terfel.
I have already finished one of the books: Cave in the Snow, the story of the Englishwoman who spent twelve years in retreat in a cave in the mountains of northern India. What an unusual life she has lead and how wonderful that she is now working to create better situations for female Buddhists.
That evening a group of my women friends all went out to dinner and back home for dessert and coffee.
By the way, when did the habit of providing everyone one bread roll (unasked for) and then charging $4 each for them start up?
The next day we went to the Mornington Peninsula as I had an urge to see the real ocean, not just the bay. It was bold, cold and dramatic and we thoroughly enjoyed walking along and breathing deeply the sea air. We stopped at several spots and had a pub lunch at Sorrento, sitting outside and watching scuba divers going off the pier. From there we enjoyed the gardens of the Digger Seeds people at Dromana and then home.
Over the next few days there were still a few loose ends to be tied up: tax return completed; funeral plan confirmed and a prepayment schedule set up, a leaking window sealed; bills paid; letters written; phone calls to mother and mother-in-law in New Zealand; business discussions with my literary agent and the writer who is working on my biography and so on. As well I did half a day of filming for the Good Medicine programme (to be shown next February) and had a lovely farewell morning tea at Global Vision where I received a gift of a large print of Van Gogh's "Starry Night" which I love so it was a perfect choice.
Tuesday was Melbourne Cup Day, a public holiday in Victoria. The Today show item had been scheduled for 8.10 am so when it didn't come on and there was no announcement of it coming up I continued my preparations to go to a Cup Day breakfast (smart suit, big hat, high heels, the works). I was just walking out the door when the reporter Adam Shand called to say it was just about to go to air. So there it was at 8.50 am, one of Adam's lovely stories with some of my favourite music running behind it.
At the function I met a sculptor/hat maker and we had a great chat about this and that with the upshot being an agreement that he would make me a stunning hat for next year's races and I will get a fabulous new outfit to go with it. This is part of my planning for positive events to look forward to after I get through the transplant. The first major one is of course the Olympic Games. I had applied for five tickets, as it turned out all were in fully sold out sessions with tickets allocated by ballot, in some cases with only a few seats actually available. And by now you should be able to guess that I got all five. Two of the rowing sessions are with B tickets but the swimming finals and athletics day are A seats. I consider this an incredibly positive omen and certainly intend to be there.
I have also spent as much time as possible with Miles and Timothy, supporting them as they prepare for their university exams. We had a couple of dinners out and went shopping. I completed the weeding, pruning and trimming of my garden, dead headed all the roses, fed them and put out snail bait. I was able to pick a huge bunch of sweet peas and leave them in several vases around the house for my sister's arrival from New Zealand. I managed three sessions at the gym but have little energy for much beyond stretching and a little work with weights. I have brought an exercise mat, dumb bells and leg weights in with me and did a short session yesterday morning.
My last morning at home was perfect. I slept well and woke to a beautiful sunny day (later temperature 27 degrees). I opened up the french doors and ate a huge breakfast outside with music from the birds as well as my stereo. I had fresh mango and strawberries, bacon and eggs, a banana muffin and freshly brewed coffee. What bliss! Later I had lunch with the boys and we set off for the hospital.
I had been asked to come at 2 pm and we arrived at 2.45 to find a park right outside on the street. The room was finally ready at 3.30 pm and we did a quick unpack so the boys could head home for more study. I had expected a different range of noises but was not prepared for the throaty roar of the special air conditioning system which has been tacked on to add sterility. Think of long distance flights on a plane where you have to get used to the engine noise and you get the picture. Then on top of that are all the various beeping, pinging, banging, loudspeaker announcements, machine clanking and other assorted noise intrusions. It is an assault on the system which is taking some getting used to. Fortunately I brought ear plugs and sleep with those in and a pillow over my head. During the day I have music on through headphones as much as possible.
On the brighter side I have a fabulous view, over Fawkner Park to the city skyline. Melbourne has wonderful skies with ever changing cloud formations. I'm on the seventh floor so have a good expansive view with only a few other hospital buildings near by.
My sister Carolyn arrived from New Zealand on Thursday night and came into the hospital. She had brought more gifts from there and I enjoyed the malted barley sugars straight away. We started putting the pictures up on the walls and working out how to make the most effective use of extremely limited storage space. Then I received a phone call from a man who had seen me on the television on Tuesday and had tracked me down. He is another New Zealander (from Tokoroa), the same age as me, who had a stem cell transplant for myelofibrosis in May in Adelaide. He is doing really well and gave me a lot of details about his treatment. He even said he enjoyed his time in hospital. As his normal occupation is truck and bulldozer driver maybe he needed the rest. It was great to hear such a positive good news story right then.
I also met a woman from a few doors down who had a transplant for bone cancer just three weeks ago who is also doing well. I met many of the medical and support staff. The room can seem like a railway station at times with all the people coming in and out. This morning I entertained five medical students for an hour, telling them about the disease and letting them all practise palpating my spleen and liver.
I was scheduled for surgery to install the Hickman catheter for late morning and had arranged for Timothy to come by after a tutorial review so he could be with me when I came out of the anaesthetic as in the past I have always had a bad reaction at this time. I had specifically requested assistance three times prior to the surgery and was assured it would be arranged. But for unknown reasons it did not happen. No medical staff was with me and Tim sat in my room for two hours waiting to be called while I was repeatedly requesting him from the recovery room. So not only did I have the distress but also the breach of trust that support would be provided. So I was not a happy camper when I returned to my room after a chest X ray on the way. Then, as the anaesthetic wore off I experienced sharp cramping pain in my lower chest area and shortness of breath. I couldn't lie down without severe discomfort. After a bit of fluffing around and another chest X ray it was decided that my lung had been punctured during the operation to install the Hickman and that there was air in the chest area and a third of the right lung had collapsed.
I won't bore anyone with the ins and outs of the frustration, anger and pain caused by this whole mess. Suffice to say it was not a day I would want to repeat. And the outcome is that everything has to be postponed for two days to allow the lung to heal. So Russell will not begin his growth stimulating injections for two days and the transfusion of the new stem cells is now back to 12 November.
However, watch this space for confirmation of that exact time as I've discovered planned times here cannot be counted on.
So it is that I am sitting up from 2 - 4 am, unable to lie down from the pain, but having to wait for four hours between medication.
One beneficial outcome is that my walls are now well covered with cards and photos. Tim will put up some photos within the next day or two.
Saturday 23 October
Yes, thats truly me! Amazing difference isnt it. And just when Id had all my family portraits done the day before those have now become of historical interest only.
So why did I do it? To face down one of my big fears. I know its vanity but I was anxious about losing my hair. First, the process itself. Ive been informed by those whove been through it that its not a pleasant process. Chunks of long hair fall out in the shower and cover your pillow looking like a dead cat. And the clumpy bits left are not attractive. Second, the impact of looking in the bathroom mirror and seeing a bald skull with sunburnt face (from the radiation) and no eyelashes or eyebrows either. Id also heard that sometimes it is the little things like this (insignificant in the overall scheme of things from the medical view point at least) that can unhinge the emotional response. Perhaps even acting to amplify other fears of loss such as loss of the life I know for one thing.
My past experience has taught me that a fear faced is never as bad as the imagination can portray it. So I decided to go for it and allow myself two weeks to get used to the transitional short hair. As well, it seemed like a great symbol for the new streamlined person that will emerge leaving a bunch of emotional baggage behind.
So off I went to the kind Rachel at Mink ( Chapel St Windsor) and away she skillfully cut. She greatly enjoyed it. Its not often that women come in with long hair and ask for it all off. Twenty minutes of red tint followed to give it extra visual bounce, although its too dark to go very red without bleaching first. Then a dash of "fudge" to make it sit up and voila a whole new look.
Halfway through the process, to my surprise and consternation, in walked the photographer (Anthony Leong) who had done the family portraits the day before. Nothing deterred him from recording all the process including the unsavoury part when ones head is wrapped in glad wrap and hot air pumped at it to speed up the colouring process. However he did capture the emergence of the new style. As did the camera crew from the Today show.
They had been tracking me around for the day. First the gym, then various things at home including unwrapping a wonderful parcel from an Internet friend in the USA who had sent me two fabulous photographs for the hospital room. They recorded some of the hospital activities as well. The most likely date for this to go to air is Monday 1 November, sometime between 7 and 9 am on Channel 9. If I get any more warning Ill post it to this web site.
I spent the whole day on Wednesday at the Alfred and covered all of the remaining out patient tasks other than one more which has to be done at home. First up were a chest X-ray and a dental X-ray. That took over an hour! I got quite a bit of reading done here.
The next task was a bone marrow biopsy and blood test. Last time I had this done here was easy and comfortable so I was not anxious as I greeted the same staff. The medications they use do leave one with a pleasant groggy dream like state for over an hour so I drifted through all of that. But the bruise remains a painful reminder of what they actually do while youre away in dreamland. I drifted off to the dentist and listened to my Walkman for the twenty-minute wait there. A most pleasant interlude. What is in those drugs!!!!
The dentist commented favourably on my brushing and flossing techniques, scraped and scrubbed and sent me off for a short lunch break. Then it was off to nuclear medicine for a somewhat unnerving process, relieved by two exceptionally pleasant staff members. They removed blood, made the red cells radioactive then set them loose into the system. Some nuclear process records their tracks and the Walkman tape ran right through to the end of the measurement process.
Another long hike (Id been backwards and forwards all over the hospital by this stage) to Lung Function where they had me breathe carbon monoxide to facilitate tracking my breathing skills. Two hours of practicing here and Im glad to say I passed the test.
By this stage I was mighty weary and phoned home for a kindly son to come and collect me. A brief detour to Blood Collection to pick up my extra large container for the twenty-four hour urine collection and I was done for the day.
Friday 16 October
Its been a busy week. Last Sunday an article was published by the Sun Herald in Sydney (http://sunherald.fairfax.com.au/content/19991010/news/news_story4.html)
and provoked a flood of emails and phone calls in response. They were universally positive and encouraging with many interesting stories to share. Other media requests for interviews came in as well. I will post advice on when any of these come to fruition.
The out patient component has begun with plenty of blood being taken, some for research purposes. My haemoglobin has actually risen slightly to 112, but the platelets have dropped to 81,000.
Today I had the radiation appointment; to hear all about what will happen and to have all my bones measured.
At my Buddhist sangha (name for the group of students who study Sogyal Rinpoches teachings) we are developing a special prayer for my situation. We had a brainstorming session about images and words that might be appropriate for the particular issues of a bone marrow transplant. I will post it to this page when it is completed.
This week I was introduced to the Reiki healing process, which was new to me. I found it very relaxing and yet energising. Thanks Natalie.
Ive also completed a new will and power of attorney. The latter deals with issues before death and obviously the former with issues after death. Some may think it odd or morbid. To me it is simply practical to cover all the possible outcomes and do as much preparation for them as I can. Then I can relax once it all starts and not worry.
Return to Main
All content ©1999-2005 Sharyn Cederman
Designed by Tim Cederman-Haysom. To contact me email me at tim at cederman com