Results Day!

Today was the bone marrow aspirate results day. For the past 3 or 4 days, I have been getting increasingly worried about this. I know this goes against my recent philosophy of trying not to worry, but this test is really important. It tells you whether the last 3 weeks of chemo have done anything and, as importantly, whether you are classified as reaching 'complete remission'. This is defined, morphologically, as having less than 5% blasts in the bone marrow and is an indication that the chemo is working. If you don't hit 5% your chances for cure drop significantly.

The last three days have been hell - whilst I didn't stress as such, my mind kept pondering my 'next steps' if the results were bad. What would I change? What would I do?

I was literally shaking when I was with the doctor and none of my sentences were coming out straight. Eventually we got to the pivotol point and I am delighted to say that my results were excellent. I had 2% blasts in the morphological test (cell smearing test) which is just about what normal people have (everbody has a certain number of blasts that are precursors to normal blood cells).

I get the results of a more detailed test later - this test is called a flow cytology test which analyses each and every white blood cell in the sample and counts whether it is normal or leukemic. Fingers crossed this is a good result to.

Once I was told, relief washed over me and I was genuinely thriled for the first time since I was diagnosed.

Me, and family celebrated by going out to a restaurant for lunch - the first time I had been out in a normal social scenario since I was diagnosed.

Looking back, I suspect I have been over-cautious in terms of isolation whilst in hospital and moreover isolation through avoiding crowded places since I've been out.

However, I think my motivation for this is as follows: When you have leukemia, or any serious illness, there is very little you can do to help your treatment.

The main things are:
- eating well
- drinking well
- remaining calm and stress free
- keeping yourself free of illness

That's it - you can add meditation and self-belief, etc, which I also strongly believe in, but there's nothing physical you can do, like physiotherapy, that will help you heal. Because of this, I think I'm trying to put 150% effort into doing each of the above just so it feels that I'm doing something!

All in all, I think I have had a relatively easy ride this round of chemo. I'm fully aware that my future rounds may not be so easy so am not being complacent. I'm still touching wood a lot of the time. I hope next round goes similarly....

(written retrospectively)

Happy Christmas!

Happy Christmas to everybody!

So pleased to be out with family and Aeey on Christmas Day!

Thank you for all your support this year!

(written retrospectively)

Bone Marrow Day :-(

Had another bone marrow aspirate today. The doctors do this about a week after your counts have come back up again to check using two different measures if/how much leukemia is left in your bone marrow...... of course, even if there are no blasts showing in your peripheral blood, they can still be in the bone marrow which is the source of all blood cells.

Fortunately an aspirate is less painful than the biopsy that I had when I was first diagnosed. Well, when I say that, I really mean it is a briefer experience. It still hurts like hell. It is hard to explain the sensation, but it feels as if somebody is drilling in to your bone. Which is, to be fair, pretty much what they are doing... it is such a unique pain that the memory of it hurts more than the actual soreness after the event. Hope I forget it soon....

I won't know the results for the week so no more news really. Had some more blood tests today and my PICC line was cleaned. Now going home to sleep off the painful memory and look forward to Christmas day tomorrow!

(written retrospectively)

Going home!

Just a quick post today as I've been told I can go home today! It's a little bit surreal because I literally pack and walk out the door. Can't explain why this feels odd, I guess it is because I have gone from a protectively isolated room with a daily routine designed to keep me infection free to being allowed to walk down the corridor and into the street. I haven't stepped into the corridor for about 1.5 weeks! It feels like a wild jungle to me.

Technically, the doctors were waiting for my white blood counts to reach 1.0, and then for my neutrophils to reach 0.5. Well today was 0.48 so close enough....

As a farewell surprise, today's lunch is a Christmas dinner with all the trimmings which was a welcome festive treat!

So, I will now be packing all the cards and bits and pieces that have been so kindly sent to me by my lovely family and friends into a box. But no fear, I'll bring them all back again for the next round!

(written retrospectively)

Shaking and Shivering...

Today was a bad day. A spot appeared under my arm and the doctors wanted to treat it with some more antibiotics so it didn't spread any infection. I had an IV infusion around 1pm and within an hour I was shaking and shivering uncontrollably.

Fortunately, I could reach the nurse call button and within about 10 minutes a nurse came in and injected me with hydrocortisol and a muscle relaxing steroid. Was breathing through an oxygen mask and trying to control my breaths as I had inadvertedly started hyperventilating. The nurse was excellent and helped calm me down and within another 5 minutes I was calm, breathing normally and no longer shaking.

All in all a very scary experience as I have never experiend a so-called infusion reaction, but fortunately the effects disappeared so quickly afterwards.

I now have a red wrist band to indicate that I have had a serious allergic reaction. oh well .....

In better news, my temperature has been back to normal for a couple of days now so looks like I beat that infection. Also, my private hope is that with all these antibiotics floating around my body, I escape having another infection until my WBCs have recovered!

By the way - white blood counts today are 0.6 so they appear to be going up already. This suggests I hit my low of 0.3 on the 13th and I am now actually in recovery. This is great news as it means that I may get home within the next week!!

White Counts Lowest

So my white counts have been dropping slowly over the past week. Yesterday they reached 0.3 which is the lowest so far. I was privately hoping that they would reach 0.0 but I've been told that it's not an indication that chemo hasn't worked if they stay above 0.

As soon as they start to rise, they need to reach around 1.0-1.5 and have a neutrophil count of at least 0.5 for me to leave the hospital! Go on you White Blood Cells!

(written retrospectively)

Temp still high .... bad rash

It's 3 days since the infection hit and although my temp dropped below 38 it still popped above a couple of times during my obs.

Therefore, the doctors have changed one of the antibiotics.

I feel better though and the pain in my lower stomach has gone so I hope it is largely beaten!

However, I have noticed this morning a weird rash on my upper legs and my left arm. It looks like thousands of little pin pricks and I think its spreading..... the doctor suspects it is due to my low platelet count. It doesn't itch or is painful so I'm not particularly worried. I guess you get used to your body doing weird things during chemo....


(written retrospectively)

Spike!

The nurses said I 'spiked' today. This means I got a temperature above or equal to 38'C and means that likely I have an infection. I have some pain in my lower stomach, so suspect this is a urinary tract or stomach infection.

Although I am on anti-fungals and anti-viral medication, there is nothing to define me from bacterial infections when I am neutropenic (<1.0 WBC). Therefore, the doctors engage in a pre-emptive strike at the first sign of symptoms. This includes:

1. Doing blood cultures of both my PICC line lumens + my peripheral blood (this will help them identify whether there is an infection in my line which is quite common apparently)

2. Start me on two strong IV antibiotics

Infections that don't go away or being antibiotic resistant are the worry so I hope these antibiotics have it licked....

(written retrospectively)

Neutropenic!

So the blood tests today showed that my white blood count had reached the neutropenia threshold of 1.0; in fact they were 0.8.

This means that I am now at significant risk of developing an infection which my body will not be able to fight on its own. This is where it gets a bit scary. The nurses give me antifungals and antivirals to help reduce the chance of me these types of infection, but there is nothing to stop me getting a bacterial infection and the only defence to these is an army of antibiotics.

Apparently 70% of infections come from your own body so there is little you can do except maintain good hygiene and drink lots of water. The others infections come from people you come into contact with - principally nurses, doctors, cleaners and visitors. Therefore I'm being a bit overcautious and only receiving visits from family.

Hope the counts go back up soon!

(written retrospectively)

White Blood Counts

Today the Doctors showed me my white blood counts (WBC). I'm beginning to understand the terminology they use and what they are looking for.

When I was admitted my WBC was 24.0. The blood test splits this up into the different types of white blood cell. Good cells are Neurotrophiles, Lymphocytes and Monocytes and they should make up 98-99% of the white blood cells in your blood. What you don't want is blasts. Blasts are either immature blood cells that haven't differentiated into proper blood cells (normal in small amounts) or leukemia cells.

My 24.0 WBC broke down as follows:
Neutrophils - 1.7
Lymphocytes - 3.1
Monocytes - 0.5
Blasts - 18.2 (huge!!)

By day 3 of the chemo, my blasts were down to 6.8 and by this morning's test, they were down to an immeasurable amount. The doctor's say that this is excellent so am well pleased today! It suggests that I am responding well to the treatment, or rather - I am not not responding well.

Anyway, I still don't have many side effects other than fatigue and very dry skin so am still considering myself very lucky and touching wood a lot....

(written retrospectively)

A routine

First night in hospital went ok. My brain didn't switch off completely when I went to sleep so it got trapped in 'thinking loops'. This happens to me when I'm under stress and my brain tries to solve abstract problems but gets confused. Still, I feel awake this morning when breakfast came.

I feel its important when I'm in here to develop a routine. I've never really had a routine other than 'work-drink-work-drink' and suspect this is an opportunity to create one. I frequently skipped breakfast when I was working and plan on specifically changing this and making breakfast the most important meal of my day (just as everybody says it should be!). Therefore, I purposefully ordered a huge breakfast consisting of the following:

1. 2 x fruit juices (tomato + cranberry)
2. weetabix
3. brown toast + marmite
4. a yogurt
5. a fruit salad
6. a cooked breakfast including sausages, scrambled eggs, baked beans and hash browns

Now amazingly, I was starving when I woke this morning and promptly finished this all off.

Had my second chemo this morning as well - just the cytarabine this time. Was uneventful and thankfully I haven't had any side effects yet so feel blessed and lucky. I've started 'touching wood' a lot and I notice that my general level of superstition rises. You feel compelled not to jinx the good positive things (like no side effects) by being complacent. Weird.

Other things in my routine are brushing my teeth after every meal (to avoid bacteria in the mouth which may speed up mucasitis) and peeing into a cardboard urinal so the nurses can add up how much water has come out of me. I also am urged to drink a _lot_ of water each day - at least 2.5 litres and I make a note of every drink that I consume. Of course, some of these things I don't intend to continue when I'm out of hospital!!

That's it for now, the rest of my day will largely be spent sitting or lying and watching TV or a DVD.....

(written retrospectively)

Admitted and first chemo!

Just a quick post to say that I was admitted today. I have been blessed with a private room with:

a) TV
b) DVD Player
c) Computer + Webcam
d) Broadband Internet
e) Fridge

... everything I need! Actually I'm amazed with the facilities here. Having internet in my room will be a lifeline I suspect....

They had to put a semi-permanent line into my arm to allow them to take stuff out (eg blood) and put stuff in (eg chemo). This was a reasonably painless experience but psychologically its a bit freaky having a port hanging out of your arm. My arm's a bit sore, but it's not too bad.

They also took my blood and showed me how viscous it is - this is apparently due to all the bad ugly leukemia cells clogging up my blood. To be honest, this is also the first time that I genuinely admitted to myself that I have leukemia. Prior to that it was an invisible enemy that everyone said I had but for which I had seen no first-hand proof. In fact, just before I was admitted, I sat down with one of the doctors and asked him again whether he was 100% sure that I had leukemia and that it wasn't all a mistake. I suspect this kind of denial is common in this situation, but seeing how weird my blood tonight really made me a believer!

I also had my first round of chemo tonight. I am on a course called 'DA 10+3' which means I take Daunorubicin for 3 days and Cytarabine in parallel for 10 days. Daunorubicin comes in a big syringe and is bright red and is a bit off-putting as it is being administered into you. The problem is that they set up a saline IV drip and then push the Daurnorubicin (find it hard spelling this) into the saline flow to dilute it. The IV machine doesn't like this because if the pressure in the line gets too high it thinks it is blocked and shuts down. Therefore the machine keeps beeping alerts as it is administered and I get worried that undiluted Daurnorubicin is flowing into my body. As it happens, I have been told that this isn't really a problem anyway so not to worry about it. I'm being told not to worry about a lot of things and to be honest, I am doing my best not to do so.

I have no control here and I have to trust everything and everyone around me. Not used to that situation, but there is no value in worrying or stressing about a situation you cannot control.

I also learnt that 'having chemo' isn't that bad (as long as you don't have an infusion or allergic reaction which I fortunately didn't). At least in my case it was ok - the IV push feels a bit cold for both the chemos, but I didn't feel anything. The cytarabine is a clear liquid that might as well have been saline to me. So getting chemo isn't bad. Instead, its the side-effects that follow administration of chemo and the risk of infection during the your periods of low white blood count that make it difficult (apparently 90% of patients will get an infection on each round of chemo).

So ... fingers crossed I don't have too bad side effects and that I have minimal infections!

(Written retrospectively)

Decisions

So I've made some decisions ....

First of all - I want to try any drugs that my consultants consider have benefits that outweigh risks. I don't like talking numbers, but the Consultant at Hillingdon commented that 45% of people in my age group (20-61 I think) survive AML for 5 years, at which point they are considered cured. This means that anything that increases this number is worth it unless the side effects increase my risk of death.

Second of all - I'll use my work health insurance and go private as (a) this is what insurance is for (b) it will guarantee me a private room, which is nice if I'm going to spend 3 months in hospital and (c) I can always move back to NHS if needed.

In terms of a hospital, I was initially very keen to stay with Hillingdon hospital as the staff and Consultants had been so good to me. However, now I have decided to go to the Royal Marsden which is both an NHS and Private hospital and is recognised to be one of the top cancer hospitals in the UK. They have accepted me which is great news and I'm due to be admitted tomorrow afternoon! I'm very eager now to get treatment started so I get through the chemo.... no point delaying and every day I am told my white blood count is increasing with bad leukemia cells!

(written retrospectively)

It's AML

I spent the weekend in Durham with close friends and did everything in my power to forget the unknown. The fact was that I knew nothing - they had done some tests and there was a chance I had something nasty, but ... I knew nothing. Therefore there was no point worrying about it. That was the idea anyway..... I did reasonably well until I kept feeling the soreness of where the bone marrow biopsy was done. That brought it back until I calmed myself down.

But it is Tuesday today and I had an appointment with Hillingdon for the results of the biopsy. As soon as I arrived, I met some of the nurses I had met during the tests and everyone and everything felt very familiar. They did another blood test and then I went to see the Haemotologist Consultant with my parents.

"You have AML". I heard the words and remained calm. I don't know why I was calm. Shock probably. However, in a way it was what I suspected and it was just a play playing out in mind for which I already, somehow, knew the plot. The Consultant explained up front that nowadays they aim for 'Cure' not just for treatment but was honest about the prognosis. The words "this is a life changing event" rung in my ears....

Those who know me well know that I use planning and process to reduce stress and solve problems. Therefore we jumped straight into planning mode to put a structure around the next days and steps and to stop me concentrating on this 'life changing event'.

Weird thing was that I still felt absolutely fine. It was only when I was in Durham that I felt some breathlessness and I'm pretty sure that was largely psychosomatic. It's hard to accept you have something really really wrong with you when you feel ok. There are a lot of leap of faiths ahead, I guess.

The Consultant explained that there is a trial started for AML sufferers which is looking at 'cutting-edge' treatments - AML-17. AML-17 offers the current Gold Standard chemotherapy regimes but adds in a couple of new drugs (in my case, Mylotarg and an m-TOR inhibitor) for some patients to understand the effectiveness of these new drugs.

Therefore, two big decisions to come - do I go on the trial and potentially get the new drugs (eg 80% of trial participants will get Mylotarg) and do I go private or stay with the NHS?

In either case, I've been told I will need 4 rounds of chemotherapy that will take 4-6 months of mainly hospital time and that I shouldn't go back to work this week due to the risk of picking up an infection on the tube or in the office. Chemotherapy aims to kill fast multiplying white blood cells, such as leukemia cells. Unfortunately it also kills normal white blood cells, red cells and platelets (i.e. pretty much everthing). Each round of chemo takes about 1-1.5 weeks to administer, then a week whilst my counts continue to drop. Finally, my counts should start to improve and when my white blood count gets to a survivable amount, I can leave the hospital for a break before coming back in for the next round.

4 months seems like a long time .... can't really get my head around that right now....


(written retrospectively)

You need to come for further tests!

"You need to come in for more further tests asap, i.e. tonight" These are words you never want to hear. I was at work last night when the call came. I had been for a routine blood test a week or so ago and had already been called back to the GP yesterday morning for a repeat full blood count (FBC).

So when I got the call from the GP, it meant to me that they had confirmed something was wrong with my blood. The GP told me to go as soon as I could to the A&E department of the hospital and ask for the haematology department where a Doctor was waiting for me. I couldn't understand the urgency of the request - just last week I had been running round London at 3am singing karaoke and feeling on top of the world!

When I got to A&E around 8pm that night, of course, they had never heard of me and started to put me through the standard A&E process of initial triaging (Them: "What's wrong with you?" Me: "Nothing that I know of, but you're expecting me" Them: "No we're not") then eventually being seen by a doctor. They repeated the blood tests again and found elevated white blood counts. Around 1am last night they also realised that I was meant to have been sent to a different hospital but the GP hadn't relayed that message.

So now I knew I had elevated white counts and that I had to go to Hillingdon hospital the next day. A quick google later and I was an armchair expert in all the various diseases and other causes of these symptoms. Not great reading!

So this morning, filled with denial-optimism that it was all a mistake, I went to Hillingdon hospital where they rapidly did a large array of blood tests and an urgent bone marrow biopsy / aspirate. The urgency once again unsettled me, but the nurses explained that they wanted to get the samples off to Kings in the afternoon and therefore needed to hit the 12:00 courier.

For those who are lucky enough not to know, a bone marrow biopsy involves inserting a needle directly into the bone and extracting a sample of the bone marrow and bone marrow fluid. It hurts. A lot. I'm not ashamed to say that when it was done I had a panic attack and started hyperventilating. The staff were remarkably good though at (a) getting it over with quickly and (b) calming me down so - THANK YOU!

After a recovery period, I met with the doctors - they didn't give anything away, but from my reading and the tests they performed, I suspect they thought it was AML - Acute Myeloid Leukemia... my next meeting is set for next Tuesday when the results of the biopsy will be ready.

(written retrospectively)