AIHA AND SPLENECTOMY

Another few months have passed and I am so tired. We managed to get to Wales to see the family in May and it was really lovely. Family really is everything and those granddaughters of mine really know how to make me laugh. I hope they know how much they are loved....my daughter too.

I knew the AIHA was back while I was in Wales. The stairs were difficult, breathless while walking and of course, the old chest vibrations and palpatations. Couple this with feeling really unwell and you have AIHA. My consultant felt my blood counts were ok and had given me another 8 weeks before I needed to see him again. After just 3 weeks and feeling so ill, I had to give in and pay another visit This time the reticulocytes were upto about 174 and hemolysing was going at a rate of knots. Dr Roy was very concerned and it seems now the only way forward is a splenectomy. He explained that there is a 50/50 chance that it will help. 50/50 - half empty or half full? I haven't asked what will be next if it doesn't work, I don't want to know at the moment....one thing to handle at a time. He said to be prepared that spleen could be full of CLL. Once we have the hemolysing under control we will have to tackle the CLL. Meanwhile I am back on high dose steroids with all the side effects, yuk! Things are moving fast and I have another appointment next Monday with Dr Roy and an appointment with Mr John, the spleen surgeon on Tuesday to plan a way forward. I have had the pneumonia and meningitis injections ready to go as I believe they want to do this quickly. I am afraid Mr John won't do it because of cardiac problems. An ECG last week was all over the place.

I have already noticed one of my sisters seem to be pulling back and I haven't heard from my brother in quite a while. I understand this as I feel this way too when someone is struggling with illness. We don't know what to say or how to cope. But my main worry is Neil and who will look after him and support him? Or will it be the same thing again that he has to cope with everything mostly by himself. A shoulder would be a good thing to offer.

BONE MARROW RESULTS

The results of my bone marrow biopsy are in. There is still 10-12% of leukaemic cells in the bone marrow. What does this mean? Well, my doctor calls it a 'good partial response'. What does it mean to me? Disease progression. It means that I still have leukaemia in my body after my last treatment. I didn't expect a complete remission this time, but it is still a disappointment. I had hoped that I might be able to forget my illness for a little while, but it seems not. The spleen question? To remove or not to remove? The decision is on hold at the moment as my doctor is going to ask advice of a world class CLL doctor. The question he is asking is, 'is it appropriate to remove my spleen at this time'. The AIHA is fairly stable and my dose of prednisolone is now 5mg and 10 mg on alternating days. I admit I am still depressed and my spirits are very low, but I am trying to hide it.

DEPRESSION

A new year. A time I always thought of as being a new start with everything to look forward to.

But with the this disease......My last post shows I had been told there was no evidence of haemolysing (AIHA). Mmmmmmm. However, destruction of red cells continues. Yes, haemolysing has not gone away. My Prednislone dose had got down to 5mg and the pattern of the past year is that once at this dose for a couple of weeks, the destruction of the red cells starts again, which is what has happened. I have had a bone marrow biopsy this week (not the most pleasant of procedures) and depending on the result and discussion with the rest of the hospital team, I will learn on 1st February if I am to have my spleen removed. This, it is hoped, will help with my red cells.

I am tired of living with CLL and I am depressed. Ten years is a long time to be ill. I would like to book a holiday in the sun and go away and relax for a couple of weeks. But I don't feel well enough to travel far and travel insurance is a nightmare at the best of times. Travel Insurance.....maybe another topic here.

Today is the First Day of the Rest of Your Life

This is a title to meditate on......

At the hospital yesterday I had some good news. It seems that the steroids may be working as the white blood count has gone down to 115,000 and my HBG is up to 12. Hooray. The steroid dose (Prednisolone) has been going down by 5mg a day from an initial start of 50mg and this week the dose is 10mg a day. Doesn't sound a lot but I guess this is what a drug addict feels when they aren't getting their full dose. I shake most of the time and don't feel at all well, but my doc says this is all to do with the steroids, so I am reassured that it is not all CLL. Next week the dose will change again and my doc says to be ready to start treatment at the drop of a hat. He thinks we will manage to keep my husband's angiogram date on 9th February and probably start after that, all being well.

Humming

Time is flying by and no hospital appointment until the 19th when we will discuss the AIHA/treatment question again.

The effects of the steroids are well documented by others, but I have never read anything about what I describe as a kind of 'humming' or 'hovering'. When I wake in the quiet of the morning, I find my chest is vibrating very, very gently (as if waiting for takeoff) with a kind of silent humming. It's not an unpleasant feeling at all, just something I haven't felt before. It's not like my clumsiness where I drop everything in sight because the steroids make me shake so much. This is very different. And I wonder if this is a preparation for my leaving my body at a later stage? Is it my energy/ soul/ light/my essence? Now I don't find this scary because as I have blogged before, I believe I will go on in another life/world/whatever when I die, but it is very comforting for me to think this. I wonder if it will stop if/when the steroids stop? I will let you know.....