Hi All,
i had my haem/oncol appointment this afternoon and got the results from my bone marrow biopsy. My blast count was recorded at 3 to 4 %!!!!! YES!!!! Last time they recorded it at 6 to 7%!! Hehe, I know it doesn't always make sense but it seems God is answering my prayers.....at least with this one. It was so nice to feel relief. I know it is still higher than 1 to 2% and I know I still have clones and a "messy marrow" but that was just something that encouraged me.
I live in fear of a high blast count with my history. God is good though. I really do believe that God can do anything and that prayer works even though I feel overwhelmed by multiple things right now :-)
If you want to know what has been going on lately, please also refer to the journal entry before as I updated that only earlier on in the day.
Thanks for your support!
Love Charisse
Wednesday, July 29, 2009
Tuesday, July 28, 2009
Pathology results and recovering
Hi All,
well it has been a rough week. I have been so swollen and in extreme pain. I have upped my pain relief with the surgeon's knowledge and it has helped greatly but I can't walk around or sit. I have to be laid back in a chair, or lying down otherwise the pressure and pain are just too much.
Tomorrow I will see my gynae to check the site. She is worried that there could be some wound break down because of how bad the swelling it. I have had a little blood loss but it is only a tiny bit. Some could be left over from my period anyway.
I got some path results. They have removed all the pre-cancerous cells......in fact, what they took out showed no pre-cancerous cells or cancer. SO now there is most definitely a clear margin. They took 4 biopsies and one or two of them showed viral changes. We are looking into this at the moment.
I also got the results back from my head biopsy a few weeks ago which I forgot about. That too was a pre-cancerous lesion type thing on my head and it is my understanding that they cut it all out with the biopsy. SO......that was on the other side from the head cancer I had last year. Luckily I was being cautious hey! I wear a hat all the time now. Even in winter, I wear the beanies when outside. I never used to be stupid in the sun but I suppose there may have been times when I didn't wear a hat. With FA, I am discovering that you just can't take any chances. I have worn hats as long as I can remember so may be it was when I was younger. It scares me though!
Ok, I have to endure a shower....ouch! I have a haem/oncol appointment this afternoon.
Love Charisse
well it has been a rough week. I have been so swollen and in extreme pain. I have upped my pain relief with the surgeon's knowledge and it has helped greatly but I can't walk around or sit. I have to be laid back in a chair, or lying down otherwise the pressure and pain are just too much.
Tomorrow I will see my gynae to check the site. She is worried that there could be some wound break down because of how bad the swelling it. I have had a little blood loss but it is only a tiny bit. Some could be left over from my period anyway.
I got some path results. They have removed all the pre-cancerous cells......in fact, what they took out showed no pre-cancerous cells or cancer. SO now there is most definitely a clear margin. They took 4 biopsies and one or two of them showed viral changes. We are looking into this at the moment.
I also got the results back from my head biopsy a few weeks ago which I forgot about. That too was a pre-cancerous lesion type thing on my head and it is my understanding that they cut it all out with the biopsy. SO......that was on the other side from the head cancer I had last year. Luckily I was being cautious hey! I wear a hat all the time now. Even in winter, I wear the beanies when outside. I never used to be stupid in the sun but I suppose there may have been times when I didn't wear a hat. With FA, I am discovering that you just can't take any chances. I have worn hats as long as I can remember so may be it was when I was younger. It scares me though!
Ok, I have to endure a shower....ouch! I have a haem/oncol appointment this afternoon.
Love Charisse
Sunday, July 26, 2009
Post Surgery
Hello People,
I got home this afternoon. I had the gynae surgery on Friday. They re-excised where the cancer was to get a clearer margin with the pre-cancerous cells. They also did a vulvoscopy and puncture biopsied 4 other places.
I discovered that my platelets had done a drop before the surgery due to me having a flu type bug 4 weeks before. I did have signs of this and was worried so I had the appropriate platelet support, especially since this surgery was going to be quite a wide incision with biopsies.
6 weeks ago when I had the original cancer cut out I had hardly any pain and was just in for the day. I also experienced no bruising at all last time. This time was different. I have some bruising and a wider cut plus 4 biopsies. They injected adrenaline into the wound which made me swell very badly. The adrenaline was to constrict the blood vessels to help decrease any bleeding. They also injected heaps of local so when I woke I wasn't too bad with pain. The surgeon said that I didn't bleed bad with the cutting but when they went to stitch me up, I started to bleed with the stitches being pulled through.....so not bad when cutting but sensitive while stitching....... However, I still didn't bleed too much and had very minimal ooze following the surgery. In fact, VERY minimal. I was told that I was bleeding like someone who had normal platelet count. However, obviously they still are very careful because my count is generally lower and a low neutrophil count can make bleeding and healing more of an issue. My neutrophils were still normal for me but low for someone who is normal. I had IV antibiotics given while in surgery.
I am sure you will love this info but it is actually that time of the month for me so it has been hard to tell where bleeding is coming from but we are pretty most certain that it is not coming from the incisions. As I mentioned before, the surgeon is really happy with me and continues to marvel with how well my body copes with surgery.
They gave me a good amount of pain relief in recovery but because the incision had local anaesthetic all injected in and around it, it wasn't all that bad. I was thinking how it didn't hurt much for being a wide incision and was quite bright when I woke up. I continued to feel bright down on the ward and was up and about to the bathroom and so on. I had some visitors! Thanks for coming to see me Mum, Denise and Alex, Darren and Angela and for the phone calls from my sister, a work mate and sms's from many people :-) Much appreciated. It all helped keep my spirits high :-) I appreciate the people who rang and couldn't come and see me because they were sick like dad.
However, that night, when the local anaesthetic wore off, boy was I in heaps of pain! It was crazy! I was so surprised! I was surprised because last time I had hardly any pain and went home the same day. Of course, I had to keep reminding myself I had more done this time. Alan oftens stays overnight with me when I have things done but this time he was going home to be with Isaac. Mum took Isaac and bed him down at her house until Alan was ready to pick him up later. Due to my distress, Alan didn't leave me til 11pm. I was just quite distressed and sore. Isaac has been sick so Alan needed to go to him. So Alan spoke to the night nurse about my anxiety and he went to get Isaac.
The pain just got out of control from there on. I ended up having 2 injections of fentanyl and panadeine forte and at some point I also had a good amount of tramadol. In the end, as it got closer to 2.20am, the night nurse came in my room, while I was still crying, and stroked my head and hand. She held my hand and I eventually fell asleep. I thought that was so sweet of the nurse. I got so distressed. I was so drugged up and had also had IVIG infusion after the surgery. IVIG infusion changes my perception as well and I don't cope emotionally as well as I do without it. I was panicked about everything, including dying from FA and pre-leukaemia and cancers and low platelets and all sorts. I remember raving on and on while the nurse stroked my head and hand! I was distressed. I take my hat off to her for being so quiet and controlled and reassuring!
Anyway, I didn't end up going home the next day due to needing more pain relief. I just rested. I had a better night's sleep the second night and managed without the fentanyl injections. I am still very sore but have managed to come home. I think recovery will take a little longer from this surgery than 6 weeks ago. Please pray my marrow recovers ok from the flu bug a few weeks ago. That always worries me.
I will find out the pathology results from the surgery and biopsies on Tuesday. Please pray that will be ok.
Pray that I don't feel too bad from the IVIG as well. On Wednesday I find out my bone marrow biopsy results as well. That is always such a huge, emotional thing.
Did I tell you all that Alan has now got a new job??? He has had one for 2 weeks with a paving franchise. He does like site management or something. Administration.....his brother is expanding his business and needed someone to take a certain position and Alan got it. Alan works 3 days a week like he was before in business management. Alan also got into university and this week was his first week doing his Bachelor of Environmental Science. He is doing external study full time. So it looks like things are looking up for us in the job area.
Oh, yes! Our house is now under contract! We got an offer on our house and the call off period has finished. Finally, we are selling our house! Praise the Lord! Things are coming under control :-)
Anyway, pray for Isaac and Alan. Isaac has been unwell with a fever, cough, runny nose, not much appetite and very flat. He is now on antibiotics but it is always a worry if I catch what he has, especially since my marrow is a bit suppressed...more than usual right now! Alan is not feeling well either. He is feeling flat and coughing a bit as well. I just cannot catch this right now! Pray for protection! Also, it is not nice to see them both sick :-(
I have some time off work while I get better.
Ok, that's all for my update! Thanks for supporting me and encouraging me. Will post again soon. I have some school holiday updates that I want to do....pictures etc. I haven't gotten around to it yet.
Lots of love,
Charisse
I got home this afternoon. I had the gynae surgery on Friday. They re-excised where the cancer was to get a clearer margin with the pre-cancerous cells. They also did a vulvoscopy and puncture biopsied 4 other places.
I discovered that my platelets had done a drop before the surgery due to me having a flu type bug 4 weeks before. I did have signs of this and was worried so I had the appropriate platelet support, especially since this surgery was going to be quite a wide incision with biopsies.
6 weeks ago when I had the original cancer cut out I had hardly any pain and was just in for the day. I also experienced no bruising at all last time. This time was different. I have some bruising and a wider cut plus 4 biopsies. They injected adrenaline into the wound which made me swell very badly. The adrenaline was to constrict the blood vessels to help decrease any bleeding. They also injected heaps of local so when I woke I wasn't too bad with pain. The surgeon said that I didn't bleed bad with the cutting but when they went to stitch me up, I started to bleed with the stitches being pulled through.....so not bad when cutting but sensitive while stitching....... However, I still didn't bleed too much and had very minimal ooze following the surgery. In fact, VERY minimal. I was told that I was bleeding like someone who had normal platelet count. However, obviously they still are very careful because my count is generally lower and a low neutrophil count can make bleeding and healing more of an issue. My neutrophils were still normal for me but low for someone who is normal. I had IV antibiotics given while in surgery.
I am sure you will love this info but it is actually that time of the month for me so it has been hard to tell where bleeding is coming from but we are pretty most certain that it is not coming from the incisions. As I mentioned before, the surgeon is really happy with me and continues to marvel with how well my body copes with surgery.
They gave me a good amount of pain relief in recovery but because the incision had local anaesthetic all injected in and around it, it wasn't all that bad. I was thinking how it didn't hurt much for being a wide incision and was quite bright when I woke up. I continued to feel bright down on the ward and was up and about to the bathroom and so on. I had some visitors! Thanks for coming to see me Mum, Denise and Alex, Darren and Angela and for the phone calls from my sister, a work mate and sms's from many people :-) Much appreciated. It all helped keep my spirits high :-) I appreciate the people who rang and couldn't come and see me because they were sick like dad.
However, that night, when the local anaesthetic wore off, boy was I in heaps of pain! It was crazy! I was so surprised! I was surprised because last time I had hardly any pain and went home the same day. Of course, I had to keep reminding myself I had more done this time. Alan oftens stays overnight with me when I have things done but this time he was going home to be with Isaac. Mum took Isaac and bed him down at her house until Alan was ready to pick him up later. Due to my distress, Alan didn't leave me til 11pm. I was just quite distressed and sore. Isaac has been sick so Alan needed to go to him. So Alan spoke to the night nurse about my anxiety and he went to get Isaac.
The pain just got out of control from there on. I ended up having 2 injections of fentanyl and panadeine forte and at some point I also had a good amount of tramadol. In the end, as it got closer to 2.20am, the night nurse came in my room, while I was still crying, and stroked my head and hand. She held my hand and I eventually fell asleep. I thought that was so sweet of the nurse. I got so distressed. I was so drugged up and had also had IVIG infusion after the surgery. IVIG infusion changes my perception as well and I don't cope emotionally as well as I do without it. I was panicked about everything, including dying from FA and pre-leukaemia and cancers and low platelets and all sorts. I remember raving on and on while the nurse stroked my head and hand! I was distressed. I take my hat off to her for being so quiet and controlled and reassuring!
Anyway, I didn't end up going home the next day due to needing more pain relief. I just rested. I had a better night's sleep the second night and managed without the fentanyl injections. I am still very sore but have managed to come home. I think recovery will take a little longer from this surgery than 6 weeks ago. Please pray my marrow recovers ok from the flu bug a few weeks ago. That always worries me.
I will find out the pathology results from the surgery and biopsies on Tuesday. Please pray that will be ok.
Pray that I don't feel too bad from the IVIG as well. On Wednesday I find out my bone marrow biopsy results as well. That is always such a huge, emotional thing.
Did I tell you all that Alan has now got a new job??? He has had one for 2 weeks with a paving franchise. He does like site management or something. Administration.....his brother is expanding his business and needed someone to take a certain position and Alan got it. Alan works 3 days a week like he was before in business management. Alan also got into university and this week was his first week doing his Bachelor of Environmental Science. He is doing external study full time. So it looks like things are looking up for us in the job area.
Oh, yes! Our house is now under contract! We got an offer on our house and the call off period has finished. Finally, we are selling our house! Praise the Lord! Things are coming under control :-)
Anyway, pray for Isaac and Alan. Isaac has been unwell with a fever, cough, runny nose, not much appetite and very flat. He is now on antibiotics but it is always a worry if I catch what he has, especially since my marrow is a bit suppressed...more than usual right now! Alan is not feeling well either. He is feeling flat and coughing a bit as well. I just cannot catch this right now! Pray for protection! Also, it is not nice to see them both sick :-(
I have some time off work while I get better.
Ok, that's all for my update! Thanks for supporting me and encouraging me. Will post again soon. I have some school holiday updates that I want to do....pictures etc. I haven't gotten around to it yet.
Lots of love,
Charisse
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