Saturday, January 24, 2009

Saturday and still waiting..

I had a good night, my temperature has remained at a low 36.5 continuously now for over 24 hours. No night sweat either! The swollen lymph gland is also now completely normal. It would appear the antibiotics have done their job.

My white blood count doubled to 0.41 overnight but is still just under half what we need before harvesting of stem cells can begin. Doctor D'Souza dropped in early this morning to take a look at me and talk about where we stood. Firstly he again repeated he was surprised at how well I appeared (I got up early and made sure I was dressed and out of bed).
He felt that we were well on target to harvest tomorrow or Monday and that the counts were as he expected. What a positive attitude he has compared to his colleague on Thursday. I told him I was certain I'd would be fine and he suggested that the slightly slow WBC recovery may be because of having to fight the infection with such low numbers. Kinda like your bodies own Kamikaze pilots I guess.

I must say I'd rather be outside! It looks fantastic out there.. clear skys and sunny. By the time I leave it will have been a week since I was admitted. At least I can't blame anything I did for the infection, we all agree that the infected lymph node under my chin pretty much points to my mouth ulcers being the likely culprit and spreading from there.

Friday, January 23, 2009

Life beyond boredom..

Five days. I really hate hospitals! I can't imagine what it would be like if I was actually sick! That's probably the only thing that's keeping me sane.
I just got back from a long walk around the hospital with Sarah. We bumped into Dr D'Souza (who's my haematologist) and then later another haematologist who treated me two weeks ago when I had chemo, Both were surprised at how well I look and that I was up and around.

Sarah shaved my hair really short this morning. It was getting to the point that just scratching my head caused a dozen or more strands to shed.
That lump under my chin doesn't seem any worse and the Doctors have now concurred with me that it's more likely a swollen lymph (rather than saliva) gland. (A quick poke around just now and I think I've convinced myself that may even be getting smaller)

My blood counts have started to mobilise right on cue. They doubled overnight and if they follow the pattern of the previous two chemo cycles, they will grow exponentially over the next 36 hours. This means that there is a high probability that we will harvest tomorrow. I had hoped we would have a white count of 1.0 today which is the minimum for a safe harvest but it is 0.26 and my platelets are at 20.
We can transfuse platelets to get us up to the 50 needed for safe harvest but you can't transfuse white blood cells. (The figures are kind of mathematical abbreviations. 50 is in fact 50,000 to the mm3).

I had a huge night last night though, Night sweats continuously for 8 hours. That's really weird and I'm hoping it's just my immune system in some sort of turmoil from the infection and my white counts starting to rise and finding there's work to do.
Come morning my temperature was a very normal 36.5 but then after sweating so much that's no surprise. Each night I seem to have a different nurse attend me show concern at my high temperature. I tell them that it happens every night, they check my chart and look puzzled. I must be an enigma. ;)

I told Sarah today all I have to do to stop the night sweats is change time zones! I'm sure there's no way my body can tell if the sun is out, so how does it know it's time to start rising my temperature in the evening and lower it in the morning?

UPDATE: My temperature is a very healthy 36.6 as I retire for bed. The swollen lymph gland is greatly improved and I feel and look better than I have since coming in five days ago. Certainly the best I've been since before having chemo. Lets see if I can get through the night without a night-sweat! Fingers crossed.

Thursday, January 22, 2009

Thursday afternoon

I decided to get off this bed, put some clothes on and stop being a sick person. The problem with being in bed all day is you tend to take on the roll of being sick. If you are dressed and walking around then you become a well person. Today I am well.

Catherine Wood is the person that is in control of bone marrow transplants, it's her job to liaise with everyone and keep me informed of where things are at.
She came into my room this morning and commented on how well I looked. My theory must have some merit!

I told her about how negative the haematologist was this morning and then I showed her my note book of blood counts. I said we will be fine by tomorrow and she expressed a more positive outlook. Saying we were still within the window for harvesting and it was early days yet.

My hair is now coming out in quite large quantities, not yet clumps, but not too far off. The swollen lymph node is thought to be a blocked/infected saliva gland (I have my doubts I think it's an infected/inflamed lymph node myself) the doctors said they will get at ENT specialist to check it out tomorrow.

I know when it comes to food I usually have some quite strong views. The German food was just plain weird. However because of my mouth and throat ulcers (Stomatitis) I'm on a pureed diet. Everything is just a splodge on a plate. Not only does it look disgusting it tastes like it too. I haven't eaten solid food in a week. I wonder what my weight is? Perhaps I'll pop down the hallway and weigh myself... 69.9KG
Why do people find it so hard to loose weight? 4kg's in a week and I can't even say I'm hungry. However I don't want to loose weight and I shall make up for lost eating once I can swallow without pain.

I have a car in my workshop tomorrow, the customer has driven down from Napier to us build him a high performance exhaust system. The problem is it's a unique sort of car and until it arrives we can't order in all the bits we need because we don't know what the original system looks like. I've spent most of my day looking at websites to see what overseas manufacturers systems look like and then I have scoured the country, phoning several of my suppliers trying to get the unique style of mufflers I require. I've told them I'm designing the system from my hospital bed. I'll get Kurt to order the parts once he has confirmed dimensions. The car must be finished by Monday and I'll be stuck here probably till Saturday at the earliest.

Another day in this tiny room..

Aaargh!! This is surreal! I just opened the text editor to start a new post. I have the TV on in the background (I forgot to mention my little room comes with a telly) and it's tuned to some sort of international news channel so I don't have to suffer daytime tv. Suddenly the language has changed to German and I'm feeling a strong sense of deja-vu and all the thoughts and feelings from my time in Germany are washing over me.. I'll get up and turn it off.. It's just too weird!.

Last night I ran a high fever and felt a bit unwell. I have a swollen lymph gland under my chin that is tender to the touch. My temperature is normal this morning. There's a definite pattern occurring. What it means though I have no idea. (neither do the doctors)
I had blood taken late last night so that blood cultures could be grown. I specifically asked them yesterday if they had done that on Monday when I was admitted and they said yes.. I think they lied.

I was visited by one of the haematologists this morning and he was very negative about the prospects of getting a successful harvest from me. I told him that day 14 was the day that things start to happen and that we will fine. I don't respect the guy in anyway. It was he that left me to possibly die with a zero platelet count while he went on holiday over Christmas 2006. I had a platelet count of 8 earlier this week and yet I had no episodes of bleeding. Back in 2006 I had blood coming out of the corner of my eyes and a rash on my legs caused by blood coming through the skin. A bang to the head would have been all it took.

They haven't told me my blood count for today yet, I'm expecting a slight increase and then for it to double tomorrow. I guess we shall see.
I've also asked them to take a good look at my throat. Here they are pumping me full of antibiotics because they think maybe my mouth ulcers might be infected and have gotten into my blood, but as I pointed out to the doctors they haven't actually taken a look in mouth! Apparently they will take a look later in the morning.
I know Im being critical again, but I don't think what I'm suggesting is anything more than common sense.

I'll update soon.

Wednesday, January 21, 2009

Hair Today, Gone tomorrow!

I've been having an on-going battle of wits with the nurses over being connected 24/7 to this darn IV. I only get the antibiotics every six hours but they want to trickle in 30ml of saline each hour to keep the line from blocking.
My argument is that it won't block and that it is a huge restriction on my movement and comfort just on an assumption that the line might block and need clearing. (something that even I could do)

Anyway one nurse promised to unhook me after lunch so I could shower, clean up and get into some clean clothes. Sarah waited with me as she wanted to help me shower without getting water on all the lines etc. Eventually she had to give up and leave as she had things she also needed to do. I decided to press the red "nurse call" button and get some attention. Luckily the nurse that came was happy to unhook my line. I jumped into the shower and with some difficulty managed to wash myself without getting the lines wet. However my hair ended up everywhere and the more I washed, the more I started to feel like Chewbacca.. hair everywhere. I'd say that by the weekend I'll have shaved my head to reduce the moult, if it hasn't already all fallen out.

I forgot to mention yesterday that after surgery my bed was wheeled out of the theater minus it's headboard. It had been removed to gain better access to my neck.
It took all last night and half of today for someone to find a replacement. No one on the surgery ward would own up to having it apparently. I joked to Sarah that I should just walk over there and find it myself!. Happiness in this place is having a headboard to lean against. You can't imagine how hard it is to sit up in bed without one.

My counts are still low, too low to start a stem cell harvest. The doctors are concerned that my temperature is still consistantly over 37 so have held me for yet another day. By tomorrow they will have hopefully worked out that 37+ is normal for me and let me sleep in my own bed.

Room with a view

I'm still here, they don't want me to go. My temperature seems to run in the mid 37's most of the time and that bothers them. Oddly in the many months that I have been taking my own temperature I've only seen one or two readings that were below that.
Could just be symptom of Hodgkin's.

I have my own room! It's great! It's small and comfortable with a view of the car park and Mount Vic beyond. Yesterday I was really grumpy and negative all day. Sarah was constantly apologising for me, telling the Doctors that I'm usually really positive.
I think a combination of blood transfusions and fevers added to my apprehension over having another line put in my neck went a long way to explaining my mood.

The operation went well, they gave me a sedative that was really weird. At the time I thought that I was lucid all the way through the operation but then over the next few hours I forgot everything. Apparently that is the nature of the drug, it's both a sedative and an amnesiac. Clever of them.. you can't complain, if you can't remember! LOL.

The theatre team was three people this time and it was done in a full size operating theatre. So obviously they have raised their game somewhat since 2006. I asked the anesthetist how many of these he had done and he replied "Hundreds, I train the other staff". Exactly what I wanted to hear.

So now I look like a cyborg, I have red and blue tubes protruding from my neck which make movement a little awkward and my neck is stiff.
We are waiting on my white counts to start rising. Yesterday they were .1, they need to be over 1 and climbing before we can start harvesting. Today is day 13 of my chemo cycle so if my counts follow my previous treatments, they should start to climb rapidly over the next few days.

Tuesday, January 20, 2009

Re-admitted.

What a pain! We came into ward 1 on monday to have a blood test and went home again.
The hospital called later in the afternoon and asked if I could come back in for a transfusion of platelets, so we drove back in again at 4pm.
However I developed a fever in the afternoon and was shivering despite the sunny day.
I had a feeling they would keep me in so I grabbed a spare tee-shirt and shorts just in case.

Sure enough they decided to pump me full of antibiotics just in case and hold me overnight. I was supposed to come in early this morning anyway to have a line inserted into my neck, so in a way it made sense to stay regardless.
I had a terrible night's sleep, weird dreams and unable to get comfortable with the IV line in my arm. This morning the doctors have said they want me to stay another night as well, just to make sure. With my blood counts almost non-existent it makes sense.

The line they will insert in my neck is the same type that I had done in 2006 for stem cell harvesting. On that occasion the surgeon had no idea how to install it and after three attempts the line was finally put in by a colleague. The whole episode was horrific for me as it is done under a local. It took and hour and a half instead of twenty minutes. I laid a complaint that was upheld and resulted in the hospital changing the way it trains it's theatre staff.

So as you can imagine I'm fairly apprehensive about going back into theatre today. I've asked to have a sedative before hand and I will be quizzing the surgeon on their experience in the procedure.

Last night they gave me one unit of platelets and one unit of whole blood. One of the doctors mentioned today that the surgeon putting the line in wanted me to have a platelet count of at least 80 before he would go ahead. I laughed.. it was 8 yesterday and to get to 80 would mean transfusing about 5 units. Something that just isn't going to happen. I guess we shall see.

Sunday, January 18, 2009

Sunday Race Day.

Sarah and I got up at around 7 this morning, grabbed something to eat and rushed out the door to pick up the race car from the workshop.
We arrived at the race venue, Port road, at 8am in time for drivers briefing. It was raining quite steadily which I don't mind as I believe it gives me a much needed edge over the car that usually wins at this event. He has far more horsepower which means that he has trouble gaining traction in the slippery conditions. I myself enjoy a good sideways play on a wet road.

I thought the first run of the day was a practice so I hammed it up and slid the car all over the road, not realising it was an official timed run. No harm done, I was fastest anyway! :)

The next run was a lot drier with plenty of grip. I posted a personal best time of 87.7 seconds, a second faster than I'd ever gone before. (So much for taking it easy as I'd told the doctors I would, but at no time did I feel like I was on my limit)
Unfortunately the guy in the more powerful car also got a run in the dry and posted a time over 2 seconds faster than I did.

At this point Sarah and I left the event and headed into the cancer ward at the hospital and got a blood test done. Afterwards we headed home and spent the next few hours on the couch watching TV. The hospital phoned and said that my counts were worse than friday at .1 for white cells (5+ is normal) and 14 for platelets, however they did not want me to come back in until tomorrow.

It was now 2pm and I was bored, sitting on the couch watching something of no interest. I looked out the window and thought " Hmmm it's a nice day outside.. wonder of they will let me re-enter the event?"
I phoned the timing marshal and he said I could return and complete my final two runs. So I threw my race suit on, jumped in the car and headed back to Seaview.

I was immediately slotted back into the waiting queue of race cars and within a few minutes was once more tearing around the back streets of Seaview. The run was going really well until the car overheated and the computer wisely decided to severely retard my engine's power output. (later I thought maybe I had blown a head-gasket but then worked through the train of events and deducted that the computer was probably smarter than me and wanted me to stop)

I finished that run with a time almost exactly the same as my personal best from the morning, even with the misfiring engine.
I did a quick check under the bonnet, couldn't see anything wrong and headed out again for my last run. Before I even got to the first corner I lost my power steering belt and as a result my steering too! So I screeched to a halt a few feet short of the curb before gingerly maneuvered the car back to the pits.

By 3pm just one hour later I was back on the couch watching the same boring TV show.. I could have imagined the whole thing.
However the two new trophies atop the TV prove otherwise.

I took out second place over-all and in class, gaining 9 precious points towards the series, plus posted a personal best and firmly believe I can go a lot faster... maybe when I'm well again ;)

Health-wise, I have painful mouth ulcers that send a dull ache up my jaw and into my ear. Eating is excruciating. They should get better over the next few days.
I seem to have more energy this afternoon than I did this morning.. maybe I've been running on adrenalin? Guess I'll find out tonight when I crash into a screaming heap.

Cheers! ..Ron