Wednesday, 30 December 2009

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)

Friday, 25 December 2009

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)

Thursday, 24 December 2009

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)

Sunday, 20 December 2009

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)

Tuesday, 15 December 2009

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!!

Monday, 14 December 2009

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)

Saturday, 12 December 2009

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)

Thursday, 10 December 2009


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)

Sunday, 6 December 2009


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)

Saturday, 5 December 2009

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)