Burning hot to Cold and shivery

My main nurse is a welcome distraction as I delight in his picturesque phrases..." The BMT transplant is a magic bullet! To put out a Victorian fire you need more than a bucket of water. We give you enough chemo to kill a baby elephant." He loves working here as he knows the patients have looked after themselves or they wouldn't have been eligible to have these treatments. To him it's a reminder every day not to take life for granted and challenges his friends with minor complaints to come visit ward 62 and see what illness really is!

On Monday I began the full on chemotherapy with cyclophosphamide infused over two days. I felt absolutely zonked and nauseous- not a pretty look! I felt like I had just completed a climb on Mt Everest without the oxygen, guide ropes or steps! Then mesna (for protecting the lining of my bladder) was infused at the same time initially creating the worst problems. I had a fairly rare and extreme reaction to it...my face flushed as red as a beetroot and my nervous system ranked up to high alert. Frantically I tried to cool down with wet cloths and a fan while Grant massaged any achy muscles as needed. In the meantime the central venous line in my chest had become infected (called cellulitis) which gave me a high temperature and left me feeling cold and shivery. Can you imagine the paradox of sitting there with a cold shivery body covered in woollen blankies and ice-cube cold towels on your beetroot-red face?

They removed that infected line Tuesday morning and have delayed Robyn's stem cell infusion until Tuesday afternoon in order to give the antibiotics time to clear the infection. Then they will insert another line on Thursday which is a good thing because the medication infusions now go through a vein in my hand which stings. Ouch!

Today the anti-rejection drug cyclosporin was infused into my bloodstream at the start of its 30 day cycle. The only side effect, as yet, is an over-heated body and, yet again, a flushed face. Fortunately my room is the coldest in the unit and is also equipped with a heater, so I am able to adjust the temperature as needed.

I am very grateful to have my family present supporting me through these tough and trying times. I don't need to care what I look like, what I say or what I don't say.

My sister Karole brought Robyn to see me fresh from the blood centre. Amazingly Robyn only needed to give blood for three hours as her stem cell count was so high. They needed to collect an astounding three million cells per kg of my body weight to make 210 million of the minuscule things and succeeded in a shorter time frame than expected. It seems that the injections have done their trick and ramped up Robyn's stem cell supply to the blood. The conclusion is that she is as healthy as an ox! This is truly fantastic as they had warned her that they might need her back the next day for a second round. She has had to deal with aching bones in her lower back, hips and sternum which luckily paracetamol had taken the edge off. Her overall report was that it was not as bad as she had expected and she was glad to have done it for me.

I am glad I asked friends to meet with me in the first week at hospital as in the past few days I've felt so totally zonked that I was definitely not in the mood for chatty company. Mostly I am lying flat on my back and can barely open an eye.

My mind has taken to conjuring up music video like images to make up for the lack of stimulation; unless this is purely a psychedelic side effect of the cocktail of anti-emetic drugs. They change and morph into different and compelling shapes. I have an image of Pegasus rearing up on his hind legs in silver on a black background in bas relief form. The clouds are all etched into diamond shapes that recede into the background. It makes me wonder if some of the far-out artists have tried these drugs! I'd love to capture these images on video and hold an exhibition. Warning: Adults only. Don't bring your children!

Walking Towards the Light

I finally moved into the BMT Isolation Unit on Friday afternoon. I have many lovely things on walls and shelves to distract me from the hospital look in the unit. They let me out (does this sound like boarding school?) for the last time yesterday and I was collected by a friend to have lunch in Newmarket. I will be in for the long haul for 3 - 5 weeks.

As I went about my day I had a sense of: last time I will collect my daughter from school for a while, last time I'll see my cat, Diaz, until later, last time I'll share time with Grant in the house for now etc etc.

This is a well-run ward hosted by a fantastically organised nurse who inspires great confidence. He told me to look at this time as just 3 months out of my life while working together for a cure. He said they like to work in the present with any side effects or reactions that occur as every patient responds differently. Also, I learnt that because I haven't had any previous chemotherapy treatments, and am relatively healthy, my immune system should bounce back quickly and I'll be out of here sooner. I'm especially impressed with him as he has found an extra table to enable me to use the computer with ease.

The last two days I've been experiencing some nausea but I've found that they've got really good drugs here to control it. It's hard to tick the boxes on the menu list when I really don't feel like eating anything. Today the nurse has hooked me up to an iv fluid and chemo drip which will be my constant companion for two days. Apparently I will be weeing frequently as a lot of fluid goes in to protect my bladder lining from the chemotherapy drug. I'm feeling cold and can't imagine wearing the summer clothes and nighties I brought with me without jackets and wraps.

My nurse has just kindly offered me an extra anti-nausea drug as it's lunchtime and I just can't face the thought of food right now. He put the drug directly into my line so that it would take effect fast.

The powers that be allowed me to bring in my lazyboy rocking chair! It's a perfect place to sit and watch the changing vista outside the window. The view is leafy and picturesque as I look out onto the main entrance to The Domain. I see many people on a mission to get some where - walking along the street, crossing the road and waiting at bus stops.

I am as the Elven Queen, Galadriel; powerful and knowing. I entrust these caring souls accompanying me on my journey as I walk towards the light...

Settled In

On Tuesday afternoon Room 4 in the haematology unit became available and I had just enough time to set up my lovely space before I was allowed to go home for the night. It's a pleasant room and I'm lucky I don't have to share it. Surprisingly part of me would've liked to have stayed Tuesday as it looks so lovely! I spent Wednesday night in it but there is word that I may be moved into the Isolation Ward today.


Apparently, in the past, patients were based at home for the first week while taking the pre-conditioning medication, busulphan, but the dose and blood test times were so rigid that it was hard to enforce that discipline onto the patients (especially with the midnight and 6am dosage times) and now the hospital only lets patients out at very structured time slots. It reminds me of when I was at school and had to get the Matron to sign my absence slip. It's imperative that the blood tests are taken at the exact minute every half hour for three times, and then the blood is couriered to Christchurch to assess that the proper amount of medication is given, taking into account the height and weight of the patient. There are quite a cocktail of other drugs to be taken four hourly, six hourly, eight hourly and even some 24 hourly. The lovely nurses and their hyper-vigilance make me feel so well looked after.

I've had two wonderful surprises from overseas. My sister-in-law, Deidre (who lives in Sydney), sent in a parcel with six presents for me to open all at once or to savour over the whole time period while I'm in hospital. I felt completely spoilt with her thoughtfulness but have restrained myself with opening of just one present for now. I may open one a week! The photo above features Deidre and Grant's brother, Ross with Grant and I. It was taken quite a few years ago in our wild and free days before kids came on the scene.

The other surprise was from my stepson's, (Matt's) girlfriend's (Chrissi's) parents who were here from Germany touring NZ at Christmas time. They are following my blog and we are emailing photos back and forth. This is impressive considering we didn't actually get to meet them as we were away at xmas holidaying in different parts of the country. It is lovely to make that connection, fun to hear about the goings on in Germany, and also they seem really nice people. Chrissi is a gem so I'm not surprised to find her parents such caring people.

Grant has a heavy workload with me being away from home. He is the main parent, chief photographer, accountant, head chef, careful shopper and most prevalent wife visitor. Of course he is very busy but Subway has been doing a great trade with him recently. Neri is visiting often and together with Grant, they provide a ray of sunshine in my life. So far they have been able to work out schedules without too much bother.

My donor sister, Robyn (from Waihi), arrives soon to collect her growth-factor injections and start the three days of injecting herself twice daily in order to mobilise the stem cells from her bone marrow into the blood. She has had no experience around hospitals in the past but is stoic about her part in the process. I am eternally grateful to her for her pivotal role in my cure.

I've had the company and support of a nice round of visitors while I'm feeling well enough. Until now I've felt quite good, although sleep deprived. Just a slight feeling of nausea and not too much enthusiasm for hospital food. I'm getting my head around being in the ward and trusting to the process. On Friday the full on chemotherapy process starts which should be kicking in by Monday.

In Limbo

My twin sister, Karole, my guardian angel

Grant helped me lug in the suitcases and bags to the Isolation Unit whereupon we found hat these wasn't a room available for me. We were taken to the family room to wait. After having visualised setting up my own nurturing space, over the last two weeks, it was upsetting to find myself in limbo. I began hoping the whole thing would be delayed and started planning a trip overseas; after all, everything was packed. But no, it was decided that I would spend my time in the Procedure Room amongst shelves and boxes and various paraphernalia until a room became free.

It eventuated that two other patients have taken longer to become well enough to be discharged. And changing the date would interfere with the next lot of patients plans. I decided that having it been me, I would appreciate the same level of consideration if I was in their predicament.

Grant sat with me as I hunkered down and left everything in cases and bags longing for a more permanent solution.

My sister, Karole, arrived to hold my hand in the lead up to the central venous line insertion. Drowsy drugs were administered and after 45 minutes of tugging and pushing, with little discomfort thankfully, I now sport a 3 lumen line over my right breast. Any blood tests or drug infusion can be applied through these, which means no needle pricks until it is removed in the next four months or so.

At six o'clock the chemotherapy started. This consisted of an anti-nausea drug, first, and then swallowing 37 little white tablets. Apparently some people have real trouble with this, but for me (having become accustomed to taking many vitamins daily) it was a piece of cake. After that came the many blood pressure, temperature and pulse tests. These 37 pills will be administered every six hours over the first week.

In the afternoon Neri arrived with a lovely bunch of silk flowers and a wonderful collage poster she has been making over the last month, unbeknown to me. It transpires that the large book she has been carrying around on her social occasions transported the poster inside, in order to procure the get well messages from friends and family. I was overcome at the lengths she has gone to so that her mum feels supported and cared for.

A comfortable evening was spent in my first night of solitary confinement.

The Vision

On Thursday my very good friends from our Luscious Ladies Lunch Babes Club met and we lunched at one of their homes in Titirangi. Our group has been meeting and dining, monthly, for over five years. We believe the world's greatest treasure is the small pleasure of spending our time with good friends. We are there in love and support of each other amidst the laughter and the tears.

They spoilt me deliciously with a beautiful bunch of red roses, a lovely fragrant rose bush to plant in my garden, yummy chocolate cake and of course lunch. They also gave Neri a splendid climbing rose 'Iceberg' which absolutely delighted her, and she is planting it under her bedroom to climb up to her second storey window. I felt so supported and cared for; everyone needs to have a support group like this!

Neri and I planned a date for High Tea at the Langham Hotel. It was a real highlight as she had never been there before. From the impeccable waiters' service to the opulent dining room, it was a sensory delight. We gorged on cakes, scones and chocolate. I gave Neri a silver heart necklace and we shared some very tender moments together.

This is the last blog entry before admission date as I go in this Monday. Grant is helping me take in a truckload of my favourite things as I've been advised that studies show it's effective to stamp your personality on the room to create a more soothing, healing space. I'll be on-line and will keep you updated while in the Isolation Unit. I'd like to thank you all for your kind messages of support and care. I am truly lucky to have such wonderful friends.

I have a vision that I am the powerful Elven Queen (played by Cate Blanchett in the Lord of the Rings). I am dressed in white and glowing with ethereal light. There are vapours swirling around as I'm falling backwards into the outstretched waiting arms that are so ready to heal me.

Vulnerability is scary!

We took another trip away, this time to Wenderholm. The weather was iffy on the Saturday but the next day was brilliant! It's always a pleasure for Grant and I to meet up with old friends and chat the day away.

I've been feeling anxious. I've worked really hard in life at not leaving myself open to being vulnerable so this is scary for me. I met with a support worker who explained that the anxiety I'm experiencing is a "normal response to a horribly abnormal situation". I think that once I'm in hospital the angst will go and a peaceful resignation will set in as I put my trust, implicitly, in the staff knowing that they will do their utmost to get me through this. Well I'm really hoping I'll feel this way and soon, please soon.

Neri has been especially loving and keeps telling me how much she'll miss having me at home when I'm in hospital. She says she will long for the hugs and kisses, sitting on my lap and the extended chats about her life. On reading a blog written by a BMT survivor I found that the unit has an age 10 cut-off date for visiting children. I discussed with my specialist about being told that Neri, who is 10, will not be able to see me in the Isolation Unit. I assured him that she will follow all of the rules and be very well-behaved. He said that he has met her and that "she is, really, a young woman". He promised that she will be allowed to visit, but that there will be some days when I won't want her there. That sits better; knowing I have a choice.

Now that the busy work is done a sense of calm is coming over me. I'm including meditation in my day, twice daily, and it is keeping me grounded. It's slowing down my mind, giving me spaces to breathe fully and enjoy the wonders that the world has to offer.

Good Omen

My great friend and celebrant, Greer (pictured in the middle at the rear), visited to discuss final arrangements, should I be so unlucky. I know it seems morbid but, for me, planning of this nature takes the anxiety away. She made it a fun and lively experience; although we did shed a few tears. Greer and I have been friends for over 15 years and she officiated at our wedding 13 years ago. Grant popped home for coffee and found us in the midst of planning the scenario. He was bewildered and speechless as to how I could cope going through these matters. He said there was no way that he would be able to do it if the tables were turned. I felt strong and brave. Afterwards I put it all in a box, locked it away in the cupboard and buried the key, metaphorically.

Time magazine arrived in the post on Saturday and I couldn't help but notice the lead article featured on the front cover 'How Faith Can Heal'. Then I saw the date: February 23 2009, the very same day I am admitted to hospital. I take that as a good omen and take the recommendation to focus on my faith to help with the healing. Since our honeymoon, back in 1995, I have been a student at the School of Philosophy and along the way have learnt many tools that will assist with my recovery. I certainly will have lots of time to put them into practice.

Recently I discovered that not every patient, who doesn't go into remisson with leukemia, is offered the only cure for the disease: a bone marrow transplant. As part of the pre-treatment I underwent a number of blood, lung and heart tests to ascertain my suitability. I am thankful to have looked after my body well and that this is my only health condition.

Valentine's morning was especially sentimental at our house. I really wanted my loved ones to know the special places they hold in my heart. As anyone who has a serious health condition will attest, the personal anxiety makes for a stressful time on their close relationships. It was hearteneing to receive red roses and read Grant's card in which he assured me that he was there for me come what may.

And how is Grant feeling in the lead up to this? He knows that going for the BMT cure is the best thing to do. Rightfully, he is concerned for me facing this ordeal. He's not sure how he's going to cope without me, but he is thankful for my preparations with the 'Care For Neri' manual and the blog to keep everyone informed. During my convalescence, we plan to take more weekend trips away as it will be a while before I can mix with groups again.

Thanks to the many of you who have offered to help. I've taken a note of your details for Grant and Paul should they need them. It really is heartwarming to find that people pull together in tough times.