Thursday, May 29, 2008

Chemo isn't Working

video

Had my biopsy yesterday. Which was very easy and virtually pain free. Unfortunately the results are not so good. We met with my doctors this afternoon and it seems the chemo has not put me into remission this time around. I have 15% blasts in my marrow. This was very unexpected and, as you can imagine, very disappointing. It seems another blow preventing me from getting to transplant stage. However, there is still an option open to me. The doctors have recommended a trial chemo that has proven very succesful in getting patients into remission. It will be a chemo that my body does not recognise so hopefully the drugs can sneak attack the disease allowing me a window to get to transfusion. This was the last thing we expected when planning to come over here for the treatment. It seems Leukaemia doesn't act according to plan.

We have arranged for Jack to come over to see us next Friday. A friend from school is flying over with her kids (Hana and Maya) and had kindly offered to bring him along. Jack is in class with Hana so hopefully it will feel like a bit of an extended school trip. I think it is important he is with us now. Sam will certainly enjoy his company again. Even though it seems I will have to be an in-patient for this treatment and won't be able to do much with him; I know he will still be happy just being around us both again.

Tuesday, May 27, 2008

Wating...


Back at home after the long weekend in hospital. Great to get a decent night's sleep again. In hospital, with the regular monitoring and whirr of air conditioning, it is an extremely disturbed night's sleep. Popped in to the clinic today for anti-biotics and a check-up. The doctors seem happy the fever is under control and neutraphils are returning (so am I!). D-Day approaches tomorrow. My bone marrow biopsy is scheduled for tomorrow morning. The hope is that any blasts found that are negative (good blasts will be present as the marrow is rebuilding itself) will be less than the amount showing before treatment. Unlikely that I will be completely free of negative blasts as the chemo was a fairly mild one they treated me with. Fingers crossed my marrow responds as favourably as it has in previous treatments. Shall post tomorrow with the results.

Off to a barbecue later to lighten the mood.

Current Reading: June issue of 'The Word' magazine
Current Listening: 'In Rainbows' by Radiohead
Currently Eating: Blue Tortilla Chips

Sunday, May 25, 2008

Husky Hilton


Hello readers (sound like an agony aunt here). Sorry, been a few days since I last posted. A quite uneventful week really until I spiked a temperature on Friday. Spent most of the day in the clinic having tests and another platelet infusion. The doctors decided to admit me to The University of Washington Hospital as my temperature wasn't letting up throughout the afternoon. So, since Friday evening I have been back into my second home of the last year - the hospital bed. I have my own room which is always nice of course. We could have had a battery pack at home dispensing the drugs - similiar to the chemo I recently had - but as I have no immune system a fever is potentially lethal and the doctors didn't want to take any chances. Good news is I haven't had a temperature since Friday night (It did hit 39c though!) so - I hope the doctors release me tomorrow. This is a dent to the budget at this stage we didn't expect; though of course I understand why they were concerned enough to get me in here quick. Looks like the counts might have started moving; so a bone marrow biopsy is likely later this week.

On a lighter note: Jack's birthday was on Friday, he sounded very happy over the phone - which was very nice to hear. Very difficult being away from him for his birthday. Sam's mum Sue organised a little party for him and 3 friends on Saturday after Auskick (kids aussie rules), he was having so much of a good time with them that he didn't want to speak to Sam when she rang on Saturday - definitely a good sign. Sue's been fantastic with them and they both seem very happy. Knowing that makes this considerably easier.

Tuesday, May 20, 2008

Sunny Seattle Weekend

Recovered from the weekend now. Such a nice day on Saturday that we went to Alki Beach; the opposite side of the bay to where we are staying. Spotted a couple of brave souls standing in the water - with the run-off from the mountains it must still be extremely cold in there. Spotted a Fish and Chip shop - will pop in there next time and see if they can reach the standard of Aussie Fish and Chips. Had a stroll along the beach then waited for a shuttle bus to take us to the ferry back to the city. We gave up after about 45mins of waiting (so that's why everyone drives a car here!) and having to witness the same cars driving back and forth and all seemingly playing the same music...we caught a taxi home. Not quite as dramatic as the ferry but we'd had enough by that time.

Sunday we went over to the lovely (they're reading this...) Ruth and Louis' house for a barbecue. Their daughter Naomi kindly picked us up to take us over to Mercer Island where they live. Had an excellent meal of Salmon and Lamb with the added surprise of a smersh (wasn't that the name of James Bond's Soviet adversary?): a biscuit concoction comprising of chocolate and melted marshmallow - a bit of a revelation. I'm sure the kids would like it. Naomi is off to Hawaii for 10 days so she has kindly let us borrow here car (good job we didn't tell her about the last car Sam drove - Oops forgot they're reading this!). It's nice having the freedom to get around the city and it certainly makes the grocery shopping easier.

I'm feeling very well still. I had a Platelet transfusion on Sunday as they had dropped quite dramatically to only 10 (normal is at least 150) and are now holding at around 30. It shows the chemo has worked as everything has been knocked down. The bone marrow biopsy has been postponed. It would have been a miracle of modern medicine if I had been well enough for it - a tad optimistic methinks. I'm surprised by the amount of energy I still have, usually by this point with such a low red blood cell count you tire very easily. I'm doing plenty of walking and not feeling exhausted by it.

Very pleased that Jack's birthday box has arrived safe and sound. Of course, being the bright spark that he is, he read the customs slip to see what was inside. I should have written down: Slippers, T.Shirt, Socks, Pencils - that would have thrown him. Poppy has a surprise box on the way too and I'm sure Jack will be indignant about it - "Why is Poppy getting a box?"

Looking forward to watching 'Flight of the Conchords' tonight. We have joined a DVD club which, for a mere $15 a month, sends you unlimited films to watch. How good is that? FOTC is another brilliant piece of HBO television featuring 'New Zealand's fourth most popular guitar-based digi-bongo acapella-rap-funk-comedy folk' duo. Very funny and one of the best comedies since 'The Day Today'.

Current Reading: 'The Nasty Bits' by Anthony Bourdain
Current Listening: 'Bowie' by Flight of the Conchords
Currently (thinking about) Eating: Chocolate Digestive Biscuits (fat chance of that...)

Saturday, May 17, 2008

Recovering


A beautiful Summers day in Seattle today. Actually, the last few days have been great. With a clear sky we now have a snowy mountain backdrop behind the Space Needle - stunning. I'm so tempted to get out and about, not impossible, but must be very careful regards coming into contact with people. We had a kind invite to the Mariner's game last night (Seattle's baseball team) from Ruth and Louis' daughter Naomi, and I would have loved to have gone but a bit too risky at this early stage methinks. Hopefully my counts will return within the next 2 weeks and I may possibly get to the Rush concert at the Gorge. That will certainly lift my spirits. Speaking of lifted spirits; great to hear that Hawthorn (Melbourne aussie rules team) won yesterday in a very close game indeed. Sam was streaming the game online and I could see a fist pump the air everytime they scored a point!

My apettite seems to have returned fully which is great. There is nothing worse than being nauseated by just the sight of food...let alone struggling to eat it. I can't afford to lose weight and strength prior to transplant so its a relief it has come back so soon. Apart from a tingling sensation in a couple of fingers I feel very well indeed. Had a few aches and pains earlier in the week which seem to have now gone completely. I even managed some time on the exercise bike yesterday afternoon; which had me sweating like a demon after only a few minutes.

Met with the doctors yesterday and they seem very happy with the way things are progressing. Transplant date is set for late June; though we can hopefully move this forward if I recover quicker than expected.

Think I'll pop out and enjoy some sunshine...

Current Reading: 'The Constant Gardener' by John Le Carre
Current Listening: 'Dead Bees on a Cake' by David Sylvian
Currently Eating: Cheese and Tomato Bagel by Sam

Wednesday, May 14, 2008

Chemo's Finished



Hello. I'm back again. Now the chemo has finished so have the anti-nausea drugs so not feeling so drowsy anymore. Trouble is, now it seems to have had the reverse effect; so that last night I only slept for about 3 hours! As you can no doubt not see, unless you possess the eyesight of a Peregrine Falcon, the screen shot of my counts above now indicates that I am neutrapaenic. My counts have dropped, so now is the waiting game for them to return and have another biopsy to see if I am in a good remission phase again. This will hopefully only take a couple of weeks. Then we can start the transplant procedure. The chemo hasn't hit me too hard, which was the idea really, not to knock me around too much before a nasty dose pre-transplant. My appettite is okay and I don't feel too exhausted by it. I must admit time seems to be dragging somewhat now that I can't really get out anymore. Thankfully, had some 'Top Gear' (the UK TV show - not illlegal substances!) to watch on DVD to keep me in good spirits. With no HBO channel in the apartment you find yourself searching over 70 stations in a desperate attempt to watch a least one reasonably good show. Okay, I admit Anthony Bourdain's 'No Reservations' is excellent but he's a diamond in the rough. Or should that be rough diamond in his case? If you've read his books you know how cool this man is...and genuine. Highly recommended.

Current Reading: 'It's Not About The Bike' by Lance Armstrong
Current Listening: 'Snakes & Arrows Live' by Rush

Sunday, May 11, 2008

Knocked out

Sam here.

Graham has been knocked out flat for the last 4 days from the anti-nausea drugs, hence the lack of posts. He isn't sick anymore but all he can do is sleep..... see Exhibit A below:


I am sure he will get back online once the chemo is stopped tomorrow and he comes off the anti-nausea drugs. So stay tuned.....


Thursday, May 8, 2008

Nausea


Not feeling so good today until we got to hospital. Thankfully they gave me some IV fluids containing anti-nausea. Perked up a bit then. Had some lunch and was ready for a sleep - these fluids make you very drowsy.

As you can see from the picture above it was Mother's Day breakfast at St. Leonard's School today. Sam's Mum Sue filled in and I'm sure she appreciated having breakfast made for her. Jack did ask Sam the other day if she would be there for next years breakfast? We certainly hope so!

Wednesday, May 7, 2008

Chemo Starts

Started chemo treatment today as an out-patient. Had an initial dose at the clinic; now carrying around a bag which will administer the chemo for the next four days. A bit like a reverse colostomy bag. Was feeling a bit nauseus earlier. Starting to pick up a bit now. Managed to eat some dinner okay as well.

Went out earlier to meet up with a friend of a friend; the lovely Kate or Batty as she is also known! She is from the UK and over here with English rockers UFO keeping them on the straight and narrow and also selling some merchandise for them. I thought I'd pop round as the club is only a few minutes walk away and say 'hello'. She was kind enough to put me on the guest list for tonight as the gig is sold out. I'm feeling up for it and as my blood counts are still high enough I'll head over there later. Be good to see them again. They were one of the first rock bands I ever listened to back in my teens.

Tuesday, May 6, 2008

Dr Hickman

You didn't think I'd keep up this now daily blog did you...no, neither did I! Had a great night at the Elbow gig last night. Great venue, quite civilized compared to what you get in the UK and Australia. They didn't want to let me in with just my Australian drivers licence for ID. They relented - thankfully. Support act; Air Traffic were very good in a Coldplay/Keane vein. Elbow were magnificent though. Frontman Guy Garvey has such a great rapport with an audience. He admitted how ridiculous encores are, so asked the crowd to sing a song instead. 'Louie, Louie' was chosen and the Seattle crowd did a great job (it had been 'Wheels on the Bus' the previous night in Vancouver).

Had our first visit to the University of Washington Hospital today. After a 'round the houses' bus trip we eventually arrived and registered. Unfortunately Dr. Hickman was not available to do my procedure. What a disapointment! The procedure was fine though; they administered just enough drugs to make me feel drowsy. Usually I'm knocked out. The revelation was the quality of the food at the hospital. It is actually tasty! Ye gods...I couldn't believe it! I'm actually looking forward to it (this opinion may change in the coming weeks!).

We made our way back to the clinic to meet with Dr. Doney regarding the decision on which chemo protocol to go with. It seems a medium chemo enough to stop the cancer in its tracks, to keep me in remission stage, prior to conditioning is the way to go. It also looks like I can administer the chemo at home via a pump rather than being admitted to hospital. Sounds good so far, we'll see how things progress tomorrow...

Monday, May 5, 2008

Daily Update

As promised here is a daily update ("Ooh, how exciting" I hear you cry). Had the usual blood tests this morning. I was expecting to be to admitted to hospital today to get going with the chemo, but it seems the schedule is for the Hickman line (central line to administer drugs/withdraw blood) to be inserted tomorrow morning and then I'll possibly be admitted on Wednesday to start the chemo. We shall see...oh, and the doctor doing the procedure is - wait for it - a Dr. Hickman! I'm just glad his surname isn't Butcher.

Had a long walk today up to the Space Needle/Experience Museum again. I noticed a Post Office up there the other day, so managed to get Jack's birthday box sent in good time for his b'day on the 23rd. Also popped in to Easy Street Records (which just happened to be around the corner). The last of the great independent music store's. Picked up the new 'Fantastic Journey' DVD documentary on the greatest live band of all time - The Who. With 4 hours worth of footage to watch - as I'll be stuck indoors for weeks - this is perfect.

We just met up with Kelly and Pam from Kentucky. Kelly is a transplant survivor on his 12 month check-up. This is a real milestone for those people recovering from a transplant as most complications will appear well within that period. Always nice to come across a success story with Leukaemia.

I'm off to the Showbox Club tonight to see the 'moody and magnificent' Elbow from sunny Manchester. It's my last free night for a while so I'm looking forward to it. I actually saw them in Melbourne last year a week before I was diagnosed with Leukaemia. So it's a bit of an odd feeling seeing them again just as I am about to go back into hospital. A strange coincidence indeed...

Sunday, May 4, 2008

Vol 1, No. 2



Well, here we are at week two already. Time - as always - is speeding by. Had another round of tests during the week: Lumber puncture (or Spinal Tap - thoughts of 'Stonehenge' or the more obvious 'Big Bottom' did not come to mind at the time!) to test for Leukaemia in the spinal fluid (results were clear - thankfully), the usual blood tests and yet another bone marrow biopsy on Friday. We decided the biopsy was a very good idea to see how the Leukaemia had progressed since last week. Unfortunately, the result shows it has more than doubled to 4.7% blasts. Although clinically still in remission - barely - it was possible to start a standard double cord transplant on Thursday. However, I feel the increased risk of relapsing post transplant with Leukaemia present at transplant is a risk not worth taking. So we have decided to have another round of chemo prior to transplant conditioning to kick these cells out. This means we can progress with the expanded cord blood transplant; which is the reason we came here in the first place. It does mean an extended stay of course, but I feel it is not worth compromising the long term results. Not sure exactly what the plan will be for the coming week as we decided late on Friday afternoon to go with this option. I imagine a central line will be inserted tomorrow and chemo will begin pretty soon. This will mean a week in hospital and then recovery at home with daily out-patient visits to the clinic.

Apart from the clinic visits during the week we have managed to get out a few times. We took a walk up to the Queen Anne district for a view of the mountain range that sits behind us (and can't be seen from where we are). It reminded me of San Francisco, tons of steps to reach the top of the hill. An old (for here) school was at the top which has been converted into apartments. Sam, being the brash Australian that she is, unlike me the cynical Brit, asked if we could go to the top for a good view. Surprisingly, they gave us the keys, so we got a stunning look at the Cascade Mountain range. Had a bite to eat at Noah's Bagel's (who seem to offer the best bagel's in Seattle). We then took a walk down to the Space Needle to take the monorail into the city. The monorail seems like a lot of effort for a 5 minute journey - a bit like the one in Sydney. Rather pointless really. I thought it would be full of tourists; seemed like a lot of locals. People really do not like walking here. Though I admit it is made difficult to get around in some areas. If you do try to go for a walk you suddenly find a highway blocking your way with no obvious pedestrian access to the other side - most odd.

I had an email yesterday from the daughter of a fellow patient at the Alfred Hospital in Melbourne to tell me that her mother, Lynne Horvat, had died on Friday. This was extremely upsetting as I became friends with Lynne during my initial hospital stay back in April last year. She had been admitted the same day as me which made things even more poignant. Lynne had also been re-admitted the same time as me in February this year as she had shown signs of relapse following transplant in October last year. I visited her in March to see how she was doing, she appeared well, although her blood counts were starting to fall. She emailed me recently after hearing about the 'A Current Affair' feature on TV. She was still so positive and there were still options open to her at the time. I had been thinking about her on Thursday as I was concerned that I hadn't heard from her for a few weeks. She seemed like my fellow traveller on this difficult journey. Rest In Peace Lynne. I'll miss you.

Thankfully, I had the distraction yesterday (Saturday) of meeting up with the lovely (English and South African) expatriate duo of Ruth and Louis and their daughter Naomi. They treated us to a lovely lunch of smoked salmon bagels (Noah's again!) at their house over in Mercer Island; a very nice suburb. I've never seen so many perfect lawns. I'm sure the neighbours refuse to speak to you if a weed appears. Seriously, it was great to get away from here and spend some time with people not connected with my treatment. We also shared an excellent Japanese meal with them. So an Indian meal to say thank you is on the cards when I get out of hospital (amazingly, peshwari nan bread is available here; if that can't inspire me to get well - then nothing can!).

Had a wander up to the Experience Museum today (pic above). I was tempted to cross the freeway like a game of 'Frogger', instead I behaved responsibly and spent 10 mins trying to find a crossroad. The museum is excellent. They change the Hendrix exhibition every two years (they have enough exhibits for the next 100 years - as we won't live to see this you'd think they would hold a larger exhibition?). Guitars, whole and in fragments, lyrics and some stage outfits on show (the butterfly outfit from the 'Isle of Wight' show). I also enjoyed the 'Grunge' exhibit plus some local metal band stuff (lot's of obscure albums I remember buying in the early 80's) and seeing some of Heart's old costumes. I could have got my hands around Nancy Wilsons waist - now there's a thought! The Science Fiction museum is next door. Loads of costumes, props and models from Star Trek, Terminator, Blade Runner and - oh yes - Logan's Run and the original Planet of the Apes. There seemed to be a complete absence of British Sci-Fi until I came across a can of 'Red Dwarf' lager and the Cat's costume (complete with golden pointy boots). One of the best things I saw was a poster for 'The Rocketeer'. A brilliant pastiche of art deco advertising.

I'll try to update daily from now on. Promise.

Current Reading: 'I Me Mine' by George Harrison
Current Listening: 'Exciter' by Depeche Mode
Currently Eating: Crab Sushi Rolls