I’m Vanessa and I found out I had Acute Promyelocytic Leukemia (APL) on January 14, 2005 when I was 13 weeks pregnant with twin boys. This web site is the story of what happened to me and I hope you find it useful, interesting, helpful or just that maybe there is someone else out there who has been through what you’re maybe going through.
The web site is now up and running (after a bit of prodding from Charlie!). I'm now in the fourth week since my diagnosis. My pregnancy is now in its seventeenth week and the twins are moving around quite a bit (mostly at night when I'm tired!). My consultant has put me on All-trans retinoic acid (ATRA), which acts on the cause of my leukaemia. This treatment is less hazardous for the twins than chemotherapy would be at this point.
Well, was in hospital yesterday. I had my usual blood test done and waited for the results. I'm really lucky to still be admitted to the ward – this means that I always have a bed in the ward, so when I go in I have somewhere to be rather than waiting in the Day unit.
The ward is a very busy place and sometimes I have to wait a while for the results, other times I can be out just after lunchtime, it just depends. While I'm waiting I tend to read and listen to my iPod. I did watch daytime television for the first few visits but it started sucking my will to live! I also tend to get through quiet a few trashy magazines! I'm far too embarrassed to tell you the book that I'm currently reading (when I start the next one I'll let you know what it is). I've also been reading a daily devotional and I've found it a real strength at times (Thanks Pam).
Firstly, a quick update from my hospital visit on Friday. I had my blood test as usual. The results show that my blood counts have gone down a bit because my body is now trying to recover and produce more blood cells. It might take a few days to get up to speed which means that I might not get out of hospital over the next week, I'll just have to see what the blood counts are like. I'm also getting some headaches as a side-effect of the ATRA treatment, this is fairly common but doesn't help when they hit about 6.00pm when I'm doing Amber's homework with her ~:-|
Charlie picked me up from Hospital about 3.00pm and we did a little shopping at Toys'R'Us – can't tell you what, it's a big secret until Megan opens her presents tomorrow!
I did promise to tell you the name of the next book I was reading…and there is a story to it… A couple of nights ago a secret package came through the door…it was around 11pm (I think)…it was bundled through the letterbox and the courier fled into the night…very mysterious… (please excuse my over use of … for dramatic tension!).
I'm not really feeling my normal happy self today. I've too much time to think and all the possibilities and problems we have are running around in my head. Charlie and the girls picked me up from hospital yesterday about 5.15pm. By the time we got home, fed, bathed the kids, did the homework, read the night time story and put them to bed it was after 8pm. That's a big change from tea at 5pm, bath after and bed by 7pm. I'm just worried that changes to routines will affect the kids. And if this happens with two what will it be like with four? I'm worried Charlie doesn't have enough time to do everything.
I'm also worried that I'll be kept in hospital because of my blood counts and then I won't even be here to remind him about things!
Hey, Hey, Hey. I'm feeling so much better! I was in hospital yesterday and my haemoglobin, which was 7 when I went into hospital at first (11.5 is normal for a woman), has gone up to 9.5. This is good when you consider that it would be lower because I'm pregnant anyway. My platelet count, which was about seventy when I first went in, is now more than 300. All great news!
Charlie contacted the Care Group from Westhill Episcopal Church and Lyn has organised lifts home for me from the hospital when I need them – which is wonderful. It means that the routine for Amber and Megan will be the same as normal which I'm really happy about. One less thing for me to worry about!
I'm really touched by how wonderful everyone is. Maria from church came round to see us with a fantastic gingerbread treasure chest stuffed full of chocolates – and chocolate is a key part of my diet currently! This is what it looked like before we all had a piece…yum. And all the messages, both via email and the guestbook are lovely – thank you all.
Hospital today was the usual: in, bloods done, read book, wait, lunch, listen to iPod, read book, get to go home. My haemoglobin is 9.6 (was 9.5 on Friday). My consultant thinks this may well be where I would be normally because I'm pregnant with twins (boys! still getting my head round that – everything for the kids is pink and purple). I think Charlie's sweating already at the thought of me with a Mothercare account card :-).
The good news is that my consultant is pleased with my progress. He looked at my bone marrow and is content with the effects of the ATRA drug I'm taking. I'm not yet in remission but I am where he would hope I would be in my treatment. Hopefully, I'll get the results of the genetic tests on my bone marrow on Friday. These will indicate the detail of how my treatment is progressing. The upshot of all of this is that I'm still a patient in the Ward with a bed etc. BUT I only have to go into hospital on Mondays and Fridays – praise God!
I'm struggling to find much to write about today. I'm feeling really good at the moment – my headaches, which I was getting every morning and every evening – have gone! I think the headaches where associated with my anaemia. I haven't had a headache for a week, yeah!
I have a hospital appointment tomorrow for my usual blood work and physical. While I'm at hospital a cleaner works at our house from 9am to 11am. She is a wonderful gift from our friends David and Denise and she is great – saves Charlie from putting on his marigolds on Saturday morning!
Amber and Megan continue to have a busy schedule, Football for Amber, Swimming for both of them plus the playgroup and school mean that they have a busier social schedule than me…but that's not too difficult at the moment :-).
Well, it's Sunday and I'm climbing the walls! Charlie has just dragged me out of the house to do a run in the car and I do feel better for it! Up until then I was getting more than a little grumpy, annoyed, angry and generally fed up!
I've been stewing since Friday night! I just think everything would be so perfect if I didn't have leukaemia. We tried for a boy and we're having two boys, great, our extension is going to be built (tell you about that in a minute) and I just feel things are finally going somewhere…but I have this leukaemia and I'm getting really angry about it. Charlie would tell you that me angry is not a good thing…I tend to roast in my own anger for a while and then explode (we did a thing called "the Marriage Course" with friends from church, lots of stuff about communication, sharing, etc. In the bit about coping with arguments I was a "raging rhino" and Charlie was a "hiding hedgehog"…very complimentary >:-o).
Have you ever felt like everything would just carry on as normal if you weren't there? I'm here and I just feel invisible. So many people are helping us and Charlie has just "taken over" with taking care of the kids, meals and so on…I just feel a bit left out ~:-( I know he has the best of intentions but that doesn't stop me feeling frustrated that I'm not the one running around like a headless chicken!
I'm glad I'm not in hospital today but I'm just thinking that it was something to break-up what is a very long week. It was our wedding anniversary on Monday – seven years! Charlie bought some flowers for me (but he got confused about if these were the delivery for Mothers Day or for our Anniversary – he had to check his email to work out which was which – my husband…so well organised :-o!) I even had a glass of red wine with my tea…well, I think one glass of wine is the least of my worries!