Hi All,
I had the most frustrating appointment today with the surgeon who removed the cancer from my head!
I am VERY disappointed in this doctor and I actually don't think he knows much and he definitely never seems to think for himself in my case! I am SO fed up and certainly don't think much of him. He may be good with his scalpel but he has many faults!
The last 4 months or so I have been having trouble with the scar on my head as you all know. There is a section of the scar that is weeping and really sore and doesn't look right. It comes and goes in cycles of 2 to 3 weeks. One minute it seems really healed and a normal scar and then all of a sudden it has stuff on it and weeps and seeps and becomes real bumpy which was kind of like how the other cancer started off but a bit different. After the head and neck oncologist watching this for 4 months, and Alan and I.....I have become concerned because the cancer I had has a high rate or reoccurring on the scalp and if it gets into the lymph nodes it can spread and it can be quite agressive. Of course, I don't want to do that and after the last cancer fooled us for 12 months, I don't want anything to get bad if it is a problem. The doctors thought the other thing was nothing to worry about and it ended up being some rare tumor! I am acting quick on this just in case.
3 weeks ago my head/neck oncologist told me that the surgeon needed to see it pronto because it looked very abnormal and he wanted to biopsy it and see what was going on. The surgeon could only get me in 3 weeks later and guess what? The scar has gone through its cycle and it looks normal now. I knew what the surgeon would say. Nothing to worry about and all normal. That happened when I showed him before Christmas when there was a tiny scab from its cycle but not looking crazy like. Well......not only did he think it was normal, he didn't seem to take into account the history or my doctor sending me there. He said that he wouldn't act on it with how it looks and he would be crazy to touch me unless he had some reason! So I said, rather urgently, that what should we do then......should we make an arrangement that I call him when it goes funny again and he get me in the next couple of days so he can see it because it is quite bad and unusual. This doctor sits there all high and mighty, hand on chin like and says NOTHING! He wasn't even concerned about the scar he said. I kept trying to tell him it goes yucky and my head/neck specialist was concerned and so was I and about FA and that people with FA can die from leaving something that looks suspicious. He still sat and said nothing. I am sorry but what an idiot!
I got upset and raised my voice.....didn't yell but got real assertive and told him that he will cause me to get into trouble with my health if he doesn't check this out. That if he has no idea how to keep my body safe, then I would be my own advocate. He then said, "I am not av available to you 24 hours a day you know!". What an idiot. What a bad attitude as a doctor.....no concern, no wanting to learn about something that could make him a good doctor. Can't even think for himself. He said, "all scars hurt you know". SO I did my, "I am a nurse and a patient who is verey aware" routine which I know they hate but they got to know they are not better than me and I know what I am doing for my health. No one is gonna pull their "high and mighty" trick with me when they have no clue! I told him that I knew that scars hurt but they DON'T WEEP or BLEED like mine was. He said, "no". A simple no. I also told him that as a nurse and as a patient I have a responsibility to myself. I think that he is not seeing what could be serious and all I am asking is that we look into it. So I will call him when it happens again and he will see me. In fact, I am going to get Alan to do it. Doctors never refuse him. I will go back to my head and neck specialist in a week and tell him the surgeon is not really co-operating and he said that if it gets real bad we will get a second opinion. I don't want to be cut open. I am not surgery happy but I do want to know why my cancer site is doing this and I don't want to be stupid.
When I asked, "can't you understand what I am saying?"...he just stared. However, the nurse in with me said in front of him, "Yes, I understand what you are saying and think you are making sense.....". Praise the Lord someone understands.
I feel cross now and it has been hours since the appointment. FA is hard enough without doctors making it extra difficult!
Phew! Thanks for letting me get that out. I am so tense. I am just trying to take care of myself *sigh*
So this sagga continues. I don't like going to new doctors when one knows your history already.
Anyway, that is my update. I have to get ready for a "Meet the teacher meeting" as Isaac starts year 1 on Monday! Wow!
Love you all,
Charisse
Thursday, January 29, 2009
Tuesday, January 27, 2009
Counts
Hello All,
I hope you like my new background. Yep, I know, I know....the words are a little harder to read with this background...but I love the background and want to keep it for a while. Also, I chose it so that your eye muscles get a good work out....hehe...haha.....hehe. Sorry.....
I had my counts repeated on Wed last week and to my relief my platelet count has come up to my average. I practically hugged my doctor when I was told and felt SO relieved. I can tell you having it drop so low was scary and I hope it doesn't do that again.
As for my neuts (ANC), they are still low but climbing up again. On Wed they had gone up from 200 to 350 and I am usually over 500. So really I fluctuate between 500 and 1500. Normal is about 2000. Labs can differ with that normal. It was good to see the count climbing again and I will be much relieved when it is up again. They are not high enough to have a port inserted yet though.
As for the port, I am not sure I am going to have that done now. My haematologist was not too keen on it since the idea was presented. A bit of history. The nurses at the cancer center constantly hassel me about a port. I have difficult veins and the last year have had very sore veins. They get upset and don't want to prick me but also feel bad if they have numerous goes which is understandable. However, I have not ever felt comfortable about a port.
I have lowish neutrophils (fight infection). Often I hear of people with FA or bone marrow failure having neuopgen injections to increase their neutrophils. However, research has shown that these injections can increase the risk of leukaemia in an FA person's marrow. In fact, it can cause this. Because my marrow is pre-leukaemic we avoid this drug because it would cause me trouble and I don't want my marrow to go into full leukaemia. However, that means that I just plod on with neuts that are lowish. Now, in general life....for me this isn't a problem. I seem to have neuts and platelets that work heaps better than their level. I am still careful but I am in no way suffering majorly from infections and stuff. My problem was the immunoglobulins that I have the infusion for. However, with having a port that is not a part of you.....it is foreign to the body and allowing access to the blood....having low neuts is not really a good thing because low grade infections can start and stay in your body. You then need to be hospitalised for IV antibiotics and sometimes even have more ops to replace ports. I am not having a transplant so I am not in hospital correcting my marrow........I can understand why my haem was worried and I have been worried too. This port could cause more problems and strain on my marrow than it could be good for me. So what is my solution if my veins are so bad! I have to trust God and see what happens. I am not comfortable having a port with this type of risk! I don't want to be sick and I certainly don't want my marrow thrown around or upset from bad infections because of a port. So far, I am going really well and am very well! Does any of this make sense? It is so hard to explain on email or computer. There are other reasons as to why I don't want a port as well.....but with my haem so uncertain and me feeling uncertain, I believe that God put a stop to the operation so I could think more about this. I will see my haem in 2 weeks and have another big discussion with him. God has always provided me with solutions when I have been in a difficult spot!
However, my counts were fine for my gynae procedures under anaesthetic. I had a pap smear and a hysteroscopy. I get results in a week or two.
ok, it is 44 degrees C here today (111 degrees F). I have a doctor's appointment to get to. Please keep praying. FA is a constant battle with counts and all sorts! Thank you for your prayers and support. It is greatly appreciated as I do get very worried and stressed. However, I must stress that God is amazing and He continues to encourage me through every worry and burden and He works wonders with my health!
Love Charisse
I hope you like my new background. Yep, I know, I know....the words are a little harder to read with this background...but I love the background and want to keep it for a while. Also, I chose it so that your eye muscles get a good work out....hehe...haha.....hehe. Sorry.....
I had my counts repeated on Wed last week and to my relief my platelet count has come up to my average. I practically hugged my doctor when I was told and felt SO relieved. I can tell you having it drop so low was scary and I hope it doesn't do that again.
As for my neuts (ANC), they are still low but climbing up again. On Wed they had gone up from 200 to 350 and I am usually over 500. So really I fluctuate between 500 and 1500. Normal is about 2000. Labs can differ with that normal. It was good to see the count climbing again and I will be much relieved when it is up again. They are not high enough to have a port inserted yet though.
As for the port, I am not sure I am going to have that done now. My haematologist was not too keen on it since the idea was presented. A bit of history. The nurses at the cancer center constantly hassel me about a port. I have difficult veins and the last year have had very sore veins. They get upset and don't want to prick me but also feel bad if they have numerous goes which is understandable. However, I have not ever felt comfortable about a port.
I have lowish neutrophils (fight infection). Often I hear of people with FA or bone marrow failure having neuopgen injections to increase their neutrophils. However, research has shown that these injections can increase the risk of leukaemia in an FA person's marrow. In fact, it can cause this. Because my marrow is pre-leukaemic we avoid this drug because it would cause me trouble and I don't want my marrow to go into full leukaemia. However, that means that I just plod on with neuts that are lowish. Now, in general life....for me this isn't a problem. I seem to have neuts and platelets that work heaps better than their level. I am still careful but I am in no way suffering majorly from infections and stuff. My problem was the immunoglobulins that I have the infusion for. However, with having a port that is not a part of you.....it is foreign to the body and allowing access to the blood....having low neuts is not really a good thing because low grade infections can start and stay in your body. You then need to be hospitalised for IV antibiotics and sometimes even have more ops to replace ports. I am not having a transplant so I am not in hospital correcting my marrow........I can understand why my haem was worried and I have been worried too. This port could cause more problems and strain on my marrow than it could be good for me. So what is my solution if my veins are so bad! I have to trust God and see what happens. I am not comfortable having a port with this type of risk! I don't want to be sick and I certainly don't want my marrow thrown around or upset from bad infections because of a port. So far, I am going really well and am very well! Does any of this make sense? It is so hard to explain on email or computer. There are other reasons as to why I don't want a port as well.....but with my haem so uncertain and me feeling uncertain, I believe that God put a stop to the operation so I could think more about this. I will see my haem in 2 weeks and have another big discussion with him. God has always provided me with solutions when I have been in a difficult spot!
However, my counts were fine for my gynae procedures under anaesthetic. I had a pap smear and a hysteroscopy. I get results in a week or two.
ok, it is 44 degrees C here today (111 degrees F). I have a doctor's appointment to get to. Please keep praying. FA is a constant battle with counts and all sorts! Thank you for your prayers and support. It is greatly appreciated as I do get very worried and stressed. However, I must stress that God is amazing and He continues to encourage me through every worry and burden and He works wonders with my health!
Love Charisse
Wednesday, January 21, 2009
Surveillance, baby, blood counts, pictures
Hi All,
well I had bloods taken today to see how my neutrophils are going. I didn't ring for them this afternoon but will know in the morning as I have another procedure booked. I am having my usual surveillance of a hysteroscopy and a pap smear under a GA. It doesn't really matter too much if the neuts are lowish for these procedures but they needed to be checked anyway. I hope that the platelet count has recovered because they did a strange drop that has concerned me. I hate it how that happens. So far, whenever that has happened I have recovered but I get really concerned if a trend may happen. As I mentioned in my last post, I know that God is doing something in my life despite the physical manifestations of FA in my life. It sounds crazy but if I told you all the details about what God has been doing some of you would think it amazing and others would probably be not sure what to think. I press onwards in faith with what God has actually revealed to me and because of this I have hope. However, it still gets scary with this walk.
I am still very worried about my head where the cancer was removed. It is not acting normal so on the 30th I will be seeing the surgeon again to work out what is going on and that may need to be re-opened. May be they can do a biopsy first before re-opening to rule out any re-occurance of cancer. Oh dear. God has things under control but the way He works makes me feel confused sometimes. I must hold on to the clear promises He has made me because God does not give empty promises. I press onwards. However, I am human and clearly worried about things.
On a good note though, I am seeing the fruit of some promises that God made to me years ago and this is exciting because it proves that God is not full of empty promises and He keeps His Word. I am not going into detail but when the time comes I will tell you ALL ABOUT IT!!!
So please pray for my blood counts that have me really petrfied right now. I am holding onto God's promises!
Below is my beloved Isaac and myself! I think this is a cute picture which I took on my phone. We "adopted" a little boy from Africa through the Christian organisation, "Compassion". He is such a sweetie. Isaac thought that we adopted him for real, as in living at our house! He was so excited and talks all the time about being a big brother! Shame.....but we will be able to make a difference in this child's life. Isaac has already been writing letters to him and drawing pictures. I am yet to write my first letter and send some family photos and at the same time, send it in the post to our dear little 4 year old boy! God is good. It is great to be able to help other people.
A new addition! Don't I look like a natural???? As I was holding her my heart felt full of love!
Ha! She is not ours! I wish I was able to annouce the birth of another baby of ours! I long to! Ha! My good friend, Rachelle, had her baby 3 days ago. A little girl. She already has a little boy. She is so gorgeous and today Alan and I went to visit and enjoyed a great chat with the parents. I was able to hold her pretty much the WHOLE time we were there! I felt like I was looking down on Isaac for she is so small...Isaac was smaller but her smallness reminded me of Isaac. How I long to hold another one of my own in my arms. It is one of my dreams again!
Ha! Isn't Alan a natural? Look at him chillin with the baby in his arms and on his knee! Yep, we would look good with another addition to our family! Congratulations my dear friends! Thanks for letting us hold your beautiful baby while we were there!
This is a cute shot. Check out the dummy or pacifier as said in the States :-) Alan you are a natural! Haha!
Well I thoroughly enjoyed time with our friends at the hospital. Rachel is so easy going and that is a credit to her. Both her and her husband are dear friends and I always have a great laugh with Rachelle! She cheers me up SO much no matter what is going on in my life and she encourages me in my dreams! She walks with us in our faith walk as well and I just want to say thank you.....and thank you for letting me cuddle your baby as it meant SO much to me beyond belief!
well I had bloods taken today to see how my neutrophils are going. I didn't ring for them this afternoon but will know in the morning as I have another procedure booked. I am having my usual surveillance of a hysteroscopy and a pap smear under a GA. It doesn't really matter too much if the neuts are lowish for these procedures but they needed to be checked anyway. I hope that the platelet count has recovered because they did a strange drop that has concerned me. I hate it how that happens. So far, whenever that has happened I have recovered but I get really concerned if a trend may happen. As I mentioned in my last post, I know that God is doing something in my life despite the physical manifestations of FA in my life. It sounds crazy but if I told you all the details about what God has been doing some of you would think it amazing and others would probably be not sure what to think. I press onwards in faith with what God has actually revealed to me and because of this I have hope. However, it still gets scary with this walk.
I am still very worried about my head where the cancer was removed. It is not acting normal so on the 30th I will be seeing the surgeon again to work out what is going on and that may need to be re-opened. May be they can do a biopsy first before re-opening to rule out any re-occurance of cancer. Oh dear. God has things under control but the way He works makes me feel confused sometimes. I must hold on to the clear promises He has made me because God does not give empty promises. I press onwards. However, I am human and clearly worried about things.
On a good note though, I am seeing the fruit of some promises that God made to me years ago and this is exciting because it proves that God is not full of empty promises and He keeps His Word. I am not going into detail but when the time comes I will tell you ALL ABOUT IT!!!
So please pray for my blood counts that have me really petrfied right now. I am holding onto God's promises!
Below is my beloved Isaac and myself! I think this is a cute picture which I took on my phone. We "adopted" a little boy from Africa through the Christian organisation, "Compassion". He is such a sweetie. Isaac thought that we adopted him for real, as in living at our house! He was so excited and talks all the time about being a big brother! Shame.....but we will be able to make a difference in this child's life. Isaac has already been writing letters to him and drawing pictures. I am yet to write my first letter and send some family photos and at the same time, send it in the post to our dear little 4 year old boy! God is good. It is great to be able to help other people.
A new addition! Don't I look like a natural???? As I was holding her my heart felt full of love!
Ha! She is not ours! I wish I was able to annouce the birth of another baby of ours! I long to! Ha! My good friend, Rachelle, had her baby 3 days ago. A little girl. She already has a little boy. She is so gorgeous and today Alan and I went to visit and enjoyed a great chat with the parents. I was able to hold her pretty much the WHOLE time we were there! I felt like I was looking down on Isaac for she is so small...Isaac was smaller but her smallness reminded me of Isaac. How I long to hold another one of my own in my arms. It is one of my dreams again!
Ha! Isn't Alan a natural? Look at him chillin with the baby in his arms and on his knee! Yep, we would look good with another addition to our family! Congratulations my dear friends! Thanks for letting us hold your beautiful baby while we were there!
This is a cute shot. Check out the dummy or pacifier as said in the States :-) Alan you are a natural! Haha!
Well I thoroughly enjoyed time with our friends at the hospital. Rachel is so easy going and that is a credit to her. Both her and her husband are dear friends and I always have a great laugh with Rachelle! She cheers me up SO much no matter what is going on in my life and she encourages me in my dreams! She walks with us in our faith walk as well and I just want to say thank you.....and thank you for letting me cuddle your baby as it meant SO much to me beyond belief!
Well, I have to get up early tomorrow at 0630am. Rachelle is in the same hospital as me tomorrow. SO if she has not gone home after my procedure and I have woken up from my anaesthetic, I might pop in and see her :-) She said that would be fine.
My sister is due her baby in about a month and a bit. I will be an aunty again! So many people having babies. I know of 3 people who had babies this past week! Awwww.........tears in my eyes :-)
Thanks for the support and keep praying. We have some hurdles to get over while we achieve our dreams at the same time :-)
Love Charisse
Thursday, January 15, 2009
Port surgery cancelled
Hi All,
well I fasted and went to the hospital today for the insertion of my port. I really had to pysch myself up for this surgery.
To be honest, I have not really wanted this surgery and have "Settled" for an abdo port because you cannot see it. Otherwise, I feel uncomfortable even talking about a port. This morning I felt pretty vulnerable about the whole thing and pushed myself to get to the hospital, sit there and be admitted and so on.
Well just before the anaesthetist is about to put in my jelco, the surgeon asked for Alan and I to come in the room for a chat. I had already seen him once. Turns out my neutrophils did a freak drop.....that is what I am calling it before I am never usually under 500...and usually 1000 or closer to it. My counts from yesterday came back and my neuts were only 200! I was shocked. So of course, surgery got cancelled because infection is too dangerous with a port. *sigh* I felt confused because I was relieved that I didn't have to have the port and then panicked about the low count....and some other counts bothered me too. SO I must admit that I have had some good tears today.
Now the port is delayed for at least 2 weeks! I don't want it anyway :-(
I just wish I didn 't have FA. Yep, can you tell...I feel real negative and upset today. Usually I can have such a good outlook but I am struggling today. I don't want low counts....I don't want to die from FA.....I don't want to experience a transplant with all the trauma that happens.....I don't want anything to do with cancer. I don't want anything to do with ANYTHING about FA. I feel agressive and upset. I don't want a port.........FA is SO debilitating. Sometimes the FEAR is unbelievable.
I wish I didn't have FA. I want so badly to be a normal person who can do normal things and not live with a fear inside all the time. I hate watching for counts as to whether they are normal or not. I don't like the options that us FA people have with medical science. They are not exactly great options. Oh yes, I appreciate the research that happens. However, it is still hurtful to our bodies and the process of "getting help" with FA problems is emotional and depressing.....and just because I have not had a transplant doesn't mean I don't experience life and death decisions.....or experience facing death.
I dislike pre-leukaemia and low counts and I dislike transplant and what it does it you. I am sad that my brother died a month after his transplant. I feel sad.
I am fed up that medical science cannot cure this thing. Only God can you know...........us humans will never understand the complexity of the human body no matter how hard we try. There may be a cure one day but we are not God....Jesus is God and He knows.... someone might think that discouraging and in a way it is, because medical science cannot help without hurting ......but I have to believe that God knows everything about my body and can fix it even when doctors have no idea. He is in control. Although today I don't feel it.
I write a lot on this blog but there are some huge things I don't share. I have a very close walk with Jesus and I am plodding along through this FA stuff, trying to achieve things that FA doctors tell me I cannot. My future with FA from a medical person's view is bleak but my future from God's point of view is full and bright and exciting.
I believe Jesus can heal. I believe He has asked me to keep pressing and I will because no medical science gives me hope like Jesus does. I believe Jesus heals a lot through medical science but boy, in my life time, I have seen miraculous healings too! Without a doubt. I really have guys....I have witnessed with my own eyes....big things......blood diseases and stuff....miraculous! It does happen!
My heart bleeds sometimes with everything going on. Today, I know God must be in control but I feel so angry at people. You don't wish someone to have FA but sometimes thoughts are so strong when you feel so closed in. I don't want it. I want a bright future and I want more children and I want to be free of FA problems.
Why should I settle for things that hurt me to fix FA stuff? Is that the best I can do for my future? No, I can have so much more. I believe I can! I REALLY feel this! Why should we settle for all of that FA stuff being the best we can do????? I want to go for greater things and with Jesus' help, I know it is possible.
I know, I know....many people will read this and just think it is venting! This is more than venting.....these are deep things in my heart...and I am only scrapping the surface. Some people may say, "get real",.......but you know what? I dislike it when people think that I am only talking Christian jargon.....because I am not...Jesus has more for me than this. I won't give up. It is real people. It is real. He has already revealed interesting things with FA and my life.
Hmm...I don't know if I even stayed on track with what I was first discussing?
FA is frustrating. Life can be frustrating but I will run on in the race....not just plod. Thanks for hanging in there through my entry :-)
Love Charisse
well I fasted and went to the hospital today for the insertion of my port. I really had to pysch myself up for this surgery.
To be honest, I have not really wanted this surgery and have "Settled" for an abdo port because you cannot see it. Otherwise, I feel uncomfortable even talking about a port. This morning I felt pretty vulnerable about the whole thing and pushed myself to get to the hospital, sit there and be admitted and so on.
Well just before the anaesthetist is about to put in my jelco, the surgeon asked for Alan and I to come in the room for a chat. I had already seen him once. Turns out my neutrophils did a freak drop.....that is what I am calling it before I am never usually under 500...and usually 1000 or closer to it. My counts from yesterday came back and my neuts were only 200! I was shocked. So of course, surgery got cancelled because infection is too dangerous with a port. *sigh* I felt confused because I was relieved that I didn't have to have the port and then panicked about the low count....and some other counts bothered me too. SO I must admit that I have had some good tears today.
Now the port is delayed for at least 2 weeks! I don't want it anyway :-(
I just wish I didn 't have FA. Yep, can you tell...I feel real negative and upset today. Usually I can have such a good outlook but I am struggling today. I don't want low counts....I don't want to die from FA.....I don't want to experience a transplant with all the trauma that happens.....I don't want anything to do with cancer. I don't want anything to do with ANYTHING about FA. I feel agressive and upset. I don't want a port.........FA is SO debilitating. Sometimes the FEAR is unbelievable.
I wish I didn't have FA. I want so badly to be a normal person who can do normal things and not live with a fear inside all the time. I hate watching for counts as to whether they are normal or not. I don't like the options that us FA people have with medical science. They are not exactly great options. Oh yes, I appreciate the research that happens. However, it is still hurtful to our bodies and the process of "getting help" with FA problems is emotional and depressing.....and just because I have not had a transplant doesn't mean I don't experience life and death decisions.....or experience facing death.
I dislike pre-leukaemia and low counts and I dislike transplant and what it does it you. I am sad that my brother died a month after his transplant. I feel sad.
I am fed up that medical science cannot cure this thing. Only God can you know...........us humans will never understand the complexity of the human body no matter how hard we try. There may be a cure one day but we are not God....Jesus is God and He knows.... someone might think that discouraging and in a way it is, because medical science cannot help without hurting ......but I have to believe that God knows everything about my body and can fix it even when doctors have no idea. He is in control. Although today I don't feel it.
I write a lot on this blog but there are some huge things I don't share. I have a very close walk with Jesus and I am plodding along through this FA stuff, trying to achieve things that FA doctors tell me I cannot. My future with FA from a medical person's view is bleak but my future from God's point of view is full and bright and exciting.
I believe Jesus can heal. I believe He has asked me to keep pressing and I will because no medical science gives me hope like Jesus does. I believe Jesus heals a lot through medical science but boy, in my life time, I have seen miraculous healings too! Without a doubt. I really have guys....I have witnessed with my own eyes....big things......blood diseases and stuff....miraculous! It does happen!
My heart bleeds sometimes with everything going on. Today, I know God must be in control but I feel so angry at people. You don't wish someone to have FA but sometimes thoughts are so strong when you feel so closed in. I don't want it. I want a bright future and I want more children and I want to be free of FA problems.
Why should I settle for things that hurt me to fix FA stuff? Is that the best I can do for my future? No, I can have so much more. I believe I can! I REALLY feel this! Why should we settle for all of that FA stuff being the best we can do????? I want to go for greater things and with Jesus' help, I know it is possible.
I know, I know....many people will read this and just think it is venting! This is more than venting.....these are deep things in my heart...and I am only scrapping the surface. Some people may say, "get real",.......but you know what? I dislike it when people think that I am only talking Christian jargon.....because I am not...Jesus has more for me than this. I won't give up. It is real people. It is real. He has already revealed interesting things with FA and my life.
Hmm...I don't know if I even stayed on track with what I was first discussing?
FA is frustrating. Life can be frustrating but I will run on in the race....not just plod. Thanks for hanging in there through my entry :-)
Love Charisse
Saturday, January 10, 2009
My Head
Hello Everyone,
well we have been busy here. It is still the summer, school holidays. We have 3 weeks more of holidays. In total, Isaac will have had 7 weeks school holidays at the end of all that! Wow! I have thoroughly LOVED having him home. Usually mums tell you that they get restless and tired with the kids being at home. I have not experienced this these holidays at all. Isaac has been so well behaved and we have done so many interesting things. Isaac is not ready to go back to school yet either. He has told me that. He isn't even bored! I hope that he feels ready to go back in 3 weeks. I want him home but he will have to start school in 3 weeks. I hope he feels ready!
So this past Friday I had my IVIG infusion and it went really well. I am not feeling too bad. Yesterday I felt rather shaky and I have a bit of a headache and leg pain but otherwise I am ok.
My head scar is healing up ok. I have been having a bit of trouble with it though. For anyone who doesn't know, I had a small, cancerous sweat gland tumor removed from there some months ago.....4 or 5 months ago. The top of the scar is still quite sore and I get a sharp pain that goes down into my head. About 1 cm of the scar there is very tender and seems to weep easily. It doesn't bleed but stuff builds up a little and then gets really sore and then feels moist and I can hardly touch it! So I told the doctor about it on Friday and he looked at it again. He said it is not acting quite normal. He is a head and neck oncologist. The rest of the scar is fine and healing well. Still a little tender but not untouchable. He is concerned something is going on there. He said that my scalp could be just really tender and delayed in healing with FA and stuff....or that there is a stitch still stuck underneath there causing this problem or that there could be abnormal cell activity going on again......the cancer. So he wants me to go back and see the surgeon to get an opinion and he wants to wait 4 more weeks to see if it settles and if it doesn't he would like the surgeon to re-open the wound to see what is going on. He said that this should be done to see if a stitch is festering under there as well....and in the mean time they would take a biopsy to check for cancer again. So re-opening it would be the key. That means another surgery which I felt a bit sad about :-(
So please pray for a good outcome there.
This Friday is my surgery date for the infusa port going into my abdo. Everything is organised and there is no reason why that shouldn't go well.
Now we have been up to quite a bit here with it being so hot. Below you can see Alan and Isaac taking a swim in my parents' pool! Lovely!
We went on a trip to the Museum with Isaac's best friend from school. Both families.....ours and theirs went and it was lovely. They had a special expedition about dinosaurs on top of the usual museum stuff :-) Isaac saw this panda bear and has been sleeping with it and babying it ever since we got it for him.....so cute!
Here are the kids having hands on fun at the museum, learning about "digging" up fossilised eggs and stuff.
I think the expedition was fun! What a cool photo!
Just before New Years in 2008 we went to the river with Darren and Angela, Alan's brother and financee. It was a lot of fun. Angela brought her dingy which had a hole in it by my bottom and we paddled around in it with water up to our waists!! Haha....hence the look on our faces! It was a windy day and we had to work hard while rowing! I laughed a lot!
Alan caught a fish.......not a huge one. One of the kids caught the biggest but the fish got away. These are Carp which are a nuisance and so you cannot throw them back in even if they are babies....shame
Isn't this a beautiful shot? By our little cabin by the river?
On to other activities. Alan and I went to a friend's wedding. We got all dressed up fancy like...hehe.....I didn't realise this picture isn't so big!
Ha! Jumping back to the cabins at the river.....aren't they cute?
Ah yes, now jumping back to the wedding. All dressed up! Alan and I on the left.
My sister and I going to our friend's kitchen tea which was a High Tea, a couple of days before. I felt all prettied up then as well :-)
So that is just some of the stuff we have been up to :-)
well we have been busy here. It is still the summer, school holidays. We have 3 weeks more of holidays. In total, Isaac will have had 7 weeks school holidays at the end of all that! Wow! I have thoroughly LOVED having him home. Usually mums tell you that they get restless and tired with the kids being at home. I have not experienced this these holidays at all. Isaac has been so well behaved and we have done so many interesting things. Isaac is not ready to go back to school yet either. He has told me that. He isn't even bored! I hope that he feels ready to go back in 3 weeks. I want him home but he will have to start school in 3 weeks. I hope he feels ready!
So this past Friday I had my IVIG infusion and it went really well. I am not feeling too bad. Yesterday I felt rather shaky and I have a bit of a headache and leg pain but otherwise I am ok.
My head scar is healing up ok. I have been having a bit of trouble with it though. For anyone who doesn't know, I had a small, cancerous sweat gland tumor removed from there some months ago.....4 or 5 months ago. The top of the scar is still quite sore and I get a sharp pain that goes down into my head. About 1 cm of the scar there is very tender and seems to weep easily. It doesn't bleed but stuff builds up a little and then gets really sore and then feels moist and I can hardly touch it! So I told the doctor about it on Friday and he looked at it again. He said it is not acting quite normal. He is a head and neck oncologist. The rest of the scar is fine and healing well. Still a little tender but not untouchable. He is concerned something is going on there. He said that my scalp could be just really tender and delayed in healing with FA and stuff....or that there is a stitch still stuck underneath there causing this problem or that there could be abnormal cell activity going on again......the cancer. So he wants me to go back and see the surgeon to get an opinion and he wants to wait 4 more weeks to see if it settles and if it doesn't he would like the surgeon to re-open the wound to see what is going on. He said that this should be done to see if a stitch is festering under there as well....and in the mean time they would take a biopsy to check for cancer again. So re-opening it would be the key. That means another surgery which I felt a bit sad about :-(
So please pray for a good outcome there.
This Friday is my surgery date for the infusa port going into my abdo. Everything is organised and there is no reason why that shouldn't go well.
Now we have been up to quite a bit here with it being so hot. Below you can see Alan and Isaac taking a swim in my parents' pool! Lovely!
We went on a trip to the Museum with Isaac's best friend from school. Both families.....ours and theirs went and it was lovely. They had a special expedition about dinosaurs on top of the usual museum stuff :-) Isaac saw this panda bear and has been sleeping with it and babying it ever since we got it for him.....so cute!
Here are the kids having hands on fun at the museum, learning about "digging" up fossilised eggs and stuff.
I think the expedition was fun! What a cool photo!
Just before New Years in 2008 we went to the river with Darren and Angela, Alan's brother and financee. It was a lot of fun. Angela brought her dingy which had a hole in it by my bottom and we paddled around in it with water up to our waists!! Haha....hence the look on our faces! It was a windy day and we had to work hard while rowing! I laughed a lot!
Alan caught a fish.......not a huge one. One of the kids caught the biggest but the fish got away. These are Carp which are a nuisance and so you cannot throw them back in even if they are babies....shame
Isn't this a beautiful shot? By our little cabin by the river?
On to other activities. Alan and I went to a friend's wedding. We got all dressed up fancy like...hehe.....I didn't realise this picture isn't so big!
Ha! Jumping back to the cabins at the river.....aren't they cute?
Ah yes, now jumping back to the wedding. All dressed up! Alan and I on the left.
My sister and I going to our friend's kitchen tea which was a High Tea, a couple of days before. I felt all prettied up then as well :-)
So that is just some of the stuff we have been up to :-)Please pray for me as I have my port inserted and my head looked at. Life has been exciting and continues to be.
Until next time!
Love Charisse
Thursday, January 1, 2009
Our 10th year wedding anniversary, final pictures of Christmas Eve and Day 2008!
Well it is the year 2009! Happy New Year again! I am recapping on some things that happened in 2008 and some final Christmas pictures.
One exciting thing that happened in 2008 was on December the 19th! Alan and I had our 10th year wedding anniversary! Yep, 10 years!!! I was 20 when I got married and Alan was 21. I am very proud of our 10 years. Not many people make it to 10 years these days........and we are no normal couple with the stresses of FA at our door step all the time. I commend Alan and am very grateful to him for sticking around throughout the hard times with FA. It should come naturally to any spouse but sadly, it doesn't and many people don't hang around. Well my guy is extra special. He takes care of me all the time and stands by me when FA gets tough. I love Alan with all my heart and I want to thank him for 10 wonderful years. I would never want to be married to anyone else. I want to grow old with him. We have had many challenges together like Isaac, our little boy, being born 13 weeks early. We spent 3 months along side Isaac's humidy cot while he was in hospital "cooking" some more so he could come home. That was a tough period but worth while! We have gone through many bone marrow biopsies together and scary results. We have endured the diagnosis of a small, serious, head tumor that was cancerous and had it removed. Alan stood by me in 2007 when I was seriously sick and hospitalised with pneumonia.......as you can see we have had plenty happen. We have had wonderful things happen as well though. Alan is my best friend. I have enjoyed all the laughs that we have had.....and will continue to have. I have enjoyed going to the movies together and having romantic evenings! I have enjoyed our family holidays and outings. I am proud of what we have achieved as a couple with Fanconi Anaemia Australia. Alan has put a lot of time and energy into FA Australia to get it to where it is.....our first camp last year was a real milestone. Overall, I have enjoyed being married to Alan and look forward to more crazy and exciting moments with him.....hehe....Thanks Al!
So I actually planned a surprise gathering for him in his honour on the night of our anniversary. My cover was that we were going out for a romantic dinner together. Then we were going to walk by the river and come home for a nice night together. Meanwhile, he did not realise that I was planning a surprise party. I contacted all his friends and my friends.....people who are significant since we got married. Once Alan and I left for dinner, I told both parents and they came over to set up for the party. I had ordered a cake and had made a "photo board" of our journey together as a couple. They set it up for me. Alan and I actually did go out for a romantic dinner and a walk by the river but I had to get him home by 8pm for the surprise party. It was difficult....hehehe.....because I didn't want him to know. One of our friends, hehe.......even rang Alan's phone and asked if they were supposed to be at our house for some anniversary thing! Haha.......if you are reading, you know who you are.....hahahahahaha!!! Alan thought he was pulling a prank! Hahahahaha! I managed to get Alan home at 8.30pm and he got a BIG surprise! Haha! He said it was his first surprise party! Haha! I haven't got the photos from the actual party yet. I need to get them off of mum. However, Alan and I took some photos of ourselves while walking down at the river where Alan presented me with a beautiful bracelet with some diamonds in it :-) See our photos below!
In case you have not noticed.....I rather like wearing this dress :-)
This is the photo board that I made for Alan. The journey begins. It is hard to see but the first number of photos are of Alan and I at my 19th. We were just courting then. We went to see the Phantom of the Opera......then our engagement, my bridal shower, the wedding, the honey moon, our first Christmas on our honey moon, our African holiday, with child, Isaac born and now.......
I took a photo of this photo on the photo board.....haha! I am 19 here, Alan 20....we were going to the Phantom of the Opera together!
You can't see this very well.....another photo of a photo because I couldn't be bothered scanning :-) This is us kissing at our engagement.
The picture of me holding the cat is one of my only pictures while I was pregnant! The others messed up! What a shame! Also you can see one of Isaac when he was born. He was only 27 weeks gestation when born.....so tiny!
We were on our honeymoon when we had our first Christmas. In the Flinder's Ranges here in Australia!
My 30th birthday party down on the right.....in our formal wear!
The board again....
Ok, I never got to post our Christmas Eve and Day photos. Here is the cubby we got Isaac all "wrapped up"....hehe. He loves it!
Christmas Eve......the cat's Christmas Tree, their presents and Santa's milk, cookies (eaten) and carrot....hehe
Isaac sleeping! I did move the snuggly from his neck. It wasn't wrapped around. He was VERY asleep!
Our stockings hung up! Isaac's is very full! We just had lollies....that's all we needed :-)
Christmas Eve......Isaac goes to bed...no presents.....he wakes up in the morning......presents!!! I used to love that about Christmas morning and still do!!!
Christmas Day photos are out of order. This is Alan's Aunty's house. His family was there for Christmas Day. We went there for Christmas tea or dinner. It was a warm day and Isaac and Alan went in the pool with Alan's cousins
Me....in that dress again.....at Alan's family's house
Uncle Darren.....Alan's brother....I think this is a sweet shot....he was being silly though..hehe
Aunty Angela......Darren's fiancee...nice shot :-)
The Fam!
Me with my Christmas present.....a video camera!
Over the last year or so, Nanna (Denise) and a whole lot of other family members have been knitting Isaac a big blanket . Nanna gave it to Isaac this Christmas because it is finished! It looks great!
Alan's mum (Denise/nanna), myself and Alan
Now this is my parents' house. We were here for Christmas Lunch. They also have a pool. Isaac got a radio controlled boat for Christmas from my mum and dad. I was having a go at "driving" it! Yes, yes, I promise that Isaac drove it the most!
Christmas Lunch! Doesn't it look yummy! Seafood!
Isaac and his radio controlled boat!
Isaac having his lunch!
Isaac and Eliana (cousin, my niece) laughing and shouting something like, "Presents, presents" Haha!
Alan and I by my parents' Christmas Tree!
Isaac posing. He is cute.
Now this is at the beginning of Christmas Day. At our house. Alan in his PJ's .....hehe......he got a GPS for Christmas from me :-)
Isaac setting up a bigger and better track with him new Thomas accessories that he got for Christmas!
Isaac and his Thomas accessories that he got from Alan and I and Santa for Christmas....haha There is Rollercoaster Moutain, a railway crossing for cars and extension tracks.....
Opening presents
Transformers! Thanks Aunty Jacqui!
This is the railway crossing that Santa got for Isaac. For weeks and weeks up to Christmas Isaac didn't know what he wanted and he said, "you decide". So I did. Then we went to see Santa a week or two before Christmas and Isaac asked him for a railway crossing where cars can cross over to add to his Thomas Track. Ever since he asked that day he kept mentioning it every day. He would say, "I hope I get that crossing for Christmas..." Well we looked everywhere for one! Ha! We couldn't find one. We went on the net and everything was in the USA or UK and would not ship to Australia. Then we went to e-bay and guess what......?????? There is was!!!! New and not used and right around the corner from our house....kind of! Haha! God was kind to us and answered our prayers.....so Isaac got what he asked for! Haha!
Well, I hope you enjoyed the photos....they were backwards. That closes Christmas for last year (how weird is it saying that????)
One exciting thing that happened in 2008 was on December the 19th! Alan and I had our 10th year wedding anniversary! Yep, 10 years!!! I was 20 when I got married and Alan was 21. I am very proud of our 10 years. Not many people make it to 10 years these days........and we are no normal couple with the stresses of FA at our door step all the time. I commend Alan and am very grateful to him for sticking around throughout the hard times with FA. It should come naturally to any spouse but sadly, it doesn't and many people don't hang around. Well my guy is extra special. He takes care of me all the time and stands by me when FA gets tough. I love Alan with all my heart and I want to thank him for 10 wonderful years. I would never want to be married to anyone else. I want to grow old with him. We have had many challenges together like Isaac, our little boy, being born 13 weeks early. We spent 3 months along side Isaac's humidy cot while he was in hospital "cooking" some more so he could come home. That was a tough period but worth while! We have gone through many bone marrow biopsies together and scary results. We have endured the diagnosis of a small, serious, head tumor that was cancerous and had it removed. Alan stood by me in 2007 when I was seriously sick and hospitalised with pneumonia.......as you can see we have had plenty happen. We have had wonderful things happen as well though. Alan is my best friend. I have enjoyed all the laughs that we have had.....and will continue to have. I have enjoyed going to the movies together and having romantic evenings! I have enjoyed our family holidays and outings. I am proud of what we have achieved as a couple with Fanconi Anaemia Australia. Alan has put a lot of time and energy into FA Australia to get it to where it is.....our first camp last year was a real milestone. Overall, I have enjoyed being married to Alan and look forward to more crazy and exciting moments with him.....hehe....Thanks Al!
So I actually planned a surprise gathering for him in his honour on the night of our anniversary. My cover was that we were going out for a romantic dinner together. Then we were going to walk by the river and come home for a nice night together. Meanwhile, he did not realise that I was planning a surprise party. I contacted all his friends and my friends.....people who are significant since we got married. Once Alan and I left for dinner, I told both parents and they came over to set up for the party. I had ordered a cake and had made a "photo board" of our journey together as a couple. They set it up for me. Alan and I actually did go out for a romantic dinner and a walk by the river but I had to get him home by 8pm for the surprise party. It was difficult....hehehe.....because I didn't want him to know. One of our friends, hehe.......even rang Alan's phone and asked if they were supposed to be at our house for some anniversary thing! Haha.......if you are reading, you know who you are.....hahahahahaha!!! Alan thought he was pulling a prank! Hahahahaha! I managed to get Alan home at 8.30pm and he got a BIG surprise! Haha! He said it was his first surprise party! Haha! I haven't got the photos from the actual party yet. I need to get them off of mum. However, Alan and I took some photos of ourselves while walking down at the river where Alan presented me with a beautiful bracelet with some diamonds in it :-) See our photos below!
In case you have not noticed.....I rather like wearing this dress :-)
This is the photo board that I made for Alan. The journey begins. It is hard to see but the first number of photos are of Alan and I at my 19th. We were just courting then. We went to see the Phantom of the Opera......then our engagement, my bridal shower, the wedding, the honey moon, our first Christmas on our honey moon, our African holiday, with child, Isaac born and now.......
I took a photo of this photo on the photo board.....haha! I am 19 here, Alan 20....we were going to the Phantom of the Opera together!
You can't see this very well.....another photo of a photo because I couldn't be bothered scanning :-) This is us kissing at our engagement.
The picture of me holding the cat is one of my only pictures while I was pregnant! The others messed up! What a shame! Also you can see one of Isaac when he was born. He was only 27 weeks gestation when born.....so tiny!
We were on our honeymoon when we had our first Christmas. In the Flinder's Ranges here in Australia!
My 30th birthday party down on the right.....in our formal wear!
The board again....
Ok, I never got to post our Christmas Eve and Day photos. Here is the cubby we got Isaac all "wrapped up"....hehe. He loves it!
Christmas Eve......the cat's Christmas Tree, their presents and Santa's milk, cookies (eaten) and carrot....hehe
Isaac sleeping! I did move the snuggly from his neck. It wasn't wrapped around. He was VERY asleep!
Our stockings hung up! Isaac's is very full! We just had lollies....that's all we needed :-)
Christmas Eve......Isaac goes to bed...no presents.....he wakes up in the morning......presents!!! I used to love that about Christmas morning and still do!!!
Christmas Day photos are out of order. This is Alan's Aunty's house. His family was there for Christmas Day. We went there for Christmas tea or dinner. It was a warm day and Isaac and Alan went in the pool with Alan's cousins
Me....in that dress again.....at Alan's family's house
Uncle Darren.....Alan's brother....I think this is a sweet shot....he was being silly though..hehe
Aunty Angela......Darren's fiancee...nice shot :-)
The Fam!
Me with my Christmas present.....a video camera!
Over the last year or so, Nanna (Denise) and a whole lot of other family members have been knitting Isaac a big blanket . Nanna gave it to Isaac this Christmas because it is finished! It looks great!
Alan's mum (Denise/nanna), myself and Alan
Now this is my parents' house. We were here for Christmas Lunch. They also have a pool. Isaac got a radio controlled boat for Christmas from my mum and dad. I was having a go at "driving" it! Yes, yes, I promise that Isaac drove it the most!
Christmas Lunch! Doesn't it look yummy! Seafood!
Isaac and his radio controlled boat!
Isaac having his lunch!
Isaac and Eliana (cousin, my niece) laughing and shouting something like, "Presents, presents" Haha!
Alan and I by my parents' Christmas Tree!
Isaac posing. He is cute.
Now this is at the beginning of Christmas Day. At our house. Alan in his PJ's .....hehe......he got a GPS for Christmas from me :-)
Isaac setting up a bigger and better track with him new Thomas accessories that he got for Christmas!
Isaac and his Thomas accessories that he got from Alan and I and Santa for Christmas....haha There is Rollercoaster Moutain, a railway crossing for cars and extension tracks.....
Opening presents
Transformers! Thanks Aunty Jacqui!
This is the railway crossing that Santa got for Isaac. For weeks and weeks up to Christmas Isaac didn't know what he wanted and he said, "you decide". So I did. Then we went to see Santa a week or two before Christmas and Isaac asked him for a railway crossing where cars can cross over to add to his Thomas Track. Ever since he asked that day he kept mentioning it every day. He would say, "I hope I get that crossing for Christmas..." Well we looked everywhere for one! Ha! We couldn't find one. We went on the net and everything was in the USA or UK and would not ship to Australia. Then we went to e-bay and guess what......?????? There is was!!!! New and not used and right around the corner from our house....kind of! Haha! God was kind to us and answered our prayers.....so Isaac got what he asked for! Haha!
Well, I hope you enjoyed the photos....they were backwards. That closes Christmas for last year (how weird is it saying that????)Happy Anniversary for another year.....11 years at the end of this year.
We did go on holidays to the river for a couple of days. I have some photos of that too.......so more posts to come!
Medically, I have infusion coming up this Friday and my infusa port surgery the next!!!
Love you all,
Charisse
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