Sunday, June 29, 2008

Rollercoaster Ride

Been a bit of a rollercoaster ride during the last week. The doctors suggested trying a different form of chemo that could potentially put me in remission. Because of the infection in the lungs I was told the transplant wasn't possible - at this stage - as the infection feeds off the radiation. Also, my chances post transplant were given as a 5% chance of survivng the year. Ho Hum!

Anyway, had another biopsy on Wednesday and now the results are looking promising! The flow is down to 3% and the morphology is between 6 - 10%; down from 25%. I still can't go to transplant just yet as the risks are too high. But at least the last lot of chemo actually had a positive effect. All these early bone marrow biopsy's caused a great deal of confusion. We were all ready to go home and prepare for the end on Wednesday. Then on Thursday everything changes. My chances of survival are also moving upwards now.

I had a further CT scan on Friday and it shows the two spots on my lungs are responding to treatment. One is now half the size while the other has reduced. There is something else that has appeared - they think is blood - so I will have to have another CT on Wednesday to check before we can go to anymore chemo.

I actually feel a lot better than I did last week. My cough has reduced and I don't feel the pressure on my chest that I felt before. My appetite is normal again and energy levels are very good.

The good thing is I can spend the last few days with Jack before he goes home on Thursday evening. We went up the Space Needle on Friday as - at last - it was a beautiful clear day. Also, went to the Science Fiction Museum and the Science Center again. He wasn't too impressed with the Science Fiction Museum; apart from the Death Star from Star Wars. He loved going to the Science Center again as there is loads of hands-on stuff to do. Sam took him kayaking today around Lake Union/Portage Bay - I watched from the sidelines - Jack left it to Sam to do most of the work and she was exhausted when they got back. Hoping to take him to the Baseball tomorrow night as the Mariners are back in town. If he doesn't enjoy the game he'll like the hotdogs!

Current Reading: 'The Grand Illusion: Love, Lies and my life with Styx' by Chuck Panozzo
Current Listening: 'Earth and Sun and Moon' by Midnight Oil
Currently Eating: McVities Caramels (a good dunking biscuit - slightly risky with the caramel center though!)

Monday, June 23, 2008

No Good News

I was waiting to post when I had some good news. Doesn't look like I will be getting any so I thought I'd update anyway. I had the biopsy last Friday and the initial result was inconclusive - potentially blasts of 6 or possibly much less. So that sounded positive.

Then today it seems the results show blasts of 25! Indicating that the chemo has not worked. They now want to undertake another biopsy on Wednesday to make sure.

My doctors will meet with specialists on Wednesday to discuss what to do next.

The results of the Broncoscopy were not too promising either. It looked like two different infections. They are giving me very strong drugs to deal with this, plus, on the good side my neutrophils have returned to help fight the infection.

The treatment we came here may now be out of the question. I may be able to go ahead with the regular cord blood transplant though this depends on whether the pneumonia is responding to treatment. It could be too risky to go ahead.

All things considered it hasn't been a good day.

Tuesday, June 17, 2008

Lung Infection

I've now developed a lung infection. I'm having a CT scan today and a tube down the lungs tomorrow to see exactly what is growing down there. A problem with the lungs now can cause further problems post transplant. They need to clear this up asap.

Now I've just been told that the biopsy reading for the flow which was 9 isn't the one they use to determine the blast count. The morphology result is 17/18. So not good. A slight increase in counts. This doesn't mean the blasts will not go down with the next biopsy. Day 14 biopsy's are not common so they have no data as to what will happen - we have to wait and see on Friday.

I think I must be due some good news at last!

Monday, June 16, 2008

More waiting and Jack

Have been in and out of hospital since last Wednesday with fevers. I was admitted Wednesday and left on Friday. Unfortunately, my temp rose again and I was back in yesterday. They found a bug with the first fever which they are treating with anti-biotics. Still waiting to see if anything turns up with this fever. I don't feel too bad with all this going on; I get a bit warm and an erratic heartbeat occasionally, but generally I feel pretty normal. Cheesed-off - but pretty normal!

Had a day 14 bone marrow biopsy last Friday. The sedative was excellent - I wish I could be on it 24 hours a day. Definitely puts you in a very calm and cosy place and takes you away from all this for a very short while. The early results from the flow came back yesterday and the blasts have dropped from 15 to 9. Good news at such an early stage. I have another biopsy on Friday which will be the clincher though.

Jack is still enjoying his time here. We took him to the Space Needle yesterday but the queue was an hour long to go up to the top so we will go another day. We did stay and do a few things at the fair. We won four cuddly toys for Poppy (dogs and a turtle) so she will be excited when he takes those back for her. She always jumps up and down going "Presents!" when someone has been away.

I'm having a blood transfusion at the moment. I'm feeling strangely invigorated. I can feel it flowing through my veins and my canine teeth are aching. At midnight I fly!

Current Reading: 'The Wasp Factory' by Iain Banks
Current Listening: 'The Singles 92 - 98' by The Verve

Tuesday, June 10, 2008

Still Alive

Still alive and - reasonably - well. Sorry, let the blog slid a tad since last week. I managed to get out of hospital Wednesday evening. The chemo was brought forward so I could get out earlier than expected (fee's start at midnight). Haven't been suffering too much from the chemo. Stomach cramps from the first batch of chemo is the only side effect so far. Appetite and energy levels are very good which is a surprise. As it's almost a week since the last chemo my blood levels have dropped which is to be expected. Had to have a platelet transfusion yesterday as they were down to 7 (150+ is normal); apart from that just having daily blood tests and some work-up prior to transplant: heart tests, teeth check-up etc. Another bone marrow biopsy due on Friday - hopefully this should give some indication of what is happening. Fingers crossed it is positive and we can get going on expanding the cords (this takes 16 days).

Jack arrived on Friday and Sam spent a very tiring day flying down to LA to pick him up. His plane was delayed for a few hours so they didn't get back until after 6 in the evening (Sam left at 6.30am). He was very excited to see Sam - plenty of tears were flowing - and excited to see a new episode of Dr.Who on Friday evening. On Saturday we took Jack to the Pacific Science Center (near the Space Needle). He loved it as there was loads of interactive stuff for kids to do. We went to an exhibition called 'Speed' which allowed kids to build Lego cars and race them as well as other speed type thingys. I was enthralled by the footage of the original crash test human; Colonel John Paul Stapp USAF propelled himself over 1000 km/h on a rocket sled and stopped in 1.4 seconds; low and behold he received a collapsed lung, broken bones and temporary blindness in his deceleration tests...surely a USAF student could have been found with the promise of promotion and the warning of 'this may hurt a bit'.

On Sunday we paid a visit to the Lego shop in Bellevue. Jack was mildly excited. He filled a couple of tubs with Lego pieces and proceeded to construct a vehicle of Brinks Mat proportions; impervious to assault. Quite impressive for a seven year old.

Today we took him to see the Fremont Troll under the Aurora bridge. This is a sculpture under the bridge of a troll holding an actual VW Beetle. Jack said 'that's a myth' when Sam asked him if he wanted to see a troll earlier in the day. He enjoyed posing with the troll (as you can see). We then stopped off at the Chittenden canal locks. A fish ladder is integrated into the locks for migration of fish, notably salmon. This is an amazing structure, unfortunately the salmon knew we were coming so were waving their tails downstream until we left. Actually, we did see one, it was floating on the surface and looking a tad bloated. We shall return my pink friends...oh yes, we shall.

Monday, June 2, 2008


Day three of my hospital stay. Seems to be going very well at the moment. I'm feeling well despite the potent chemo they are currently giving me. A little bit of nausea but my appettite is good. Last nights pasta and meat sauce was excellent - never thought I'd say that while in hospital! Today's toasted cheese sandwich was diabolical though - along with a bowl of tomato soup this is my deathrow meal so you can imagine how disapointed I was! - must have a word with the chef.

Time is going fairly fast in here: Reading, listening to music, arsing about on the internet - thank you facebook - contemplating my navel, that sort of thing.

Looking forward to seeing Jack B on Friday. He is very excited, as you can imagine. He has asked to bring his birthday Spiderman Monopoly in his luggage - at least Poppy won't be around to destroy it mid-game! Hopefully, I will be discharged on Thursday so I can be around him rather than just seeing him on hospital visits.

Current Reading: 'The Adrian Mole Diaries' by Sue Townsend
Current Listening: 'Cities in Dust' by Siouxsie & The Banshees
Currently Eating: Mentos