Great News!

Hello All,

the surgeon just called my mobile. Seems that pathology was wrong on the sebaceous gland carcinoma. Pathology came back after having the tumor removed. It was a sweat gland but NOT sebaceous gland carcinoma. I asked him what this meant and he said, hehe...get this, "I have no idea". So I said....."ok, I will find out" and then I asked, "does this spread like a sebaceous gland carcinoma" and he said "no, the pathologist said it is not known to spread so it is a better outcome for you than the sebaceous gland carcinoma".

So there we go. This is good. I will need to go to my follow up appointment with the surgeon and also get more information about this sweat gland cancer as to whether there is any follow up at all. However, I am guessing, without consulting a doctor, that because sebaceous gland carcinoma is related to Muir-Torre Syndrome that because it is not a sebaceous gland carcinoma that I don't have Muir-Torre Syndrome and only have FA! However, I will check about all that DNA testing that was going on and will speak to my head and neck cancer specialist about the outcome of this new pathology. It is good news though. Also, they got it all. Clear margins......

Ah yes, good news. Praise the Lord. We have been praying so hard about all this.

I will get back to you when I know a bit more about this new news......yay!!!!!!

Love Charisse

How Am I Feeling? Some Thank yous!

First of all,

thanks to Alan, my wife, for writing my last update.....hehe....but one correction, he is my husband.....hehe......that is funny. For those of you who do not know, Alan is my husband not my wife.

Ok, IVIG infusion went well on Friday. I was heaps wiped out from the anaesthetic on Thursday and my head has been throbbing something awful so I have been having digesic practically every 4 hours which has made me feel a bit wiped out too. Today my head was a bit better and not so painful but my hand has been really painful where they cut out the suspicuous spot as well. I re-dressed the wound yesterday and it looked good. It looked a bit digusting not even being 24 hours old, but healthy. I will re-dress it again in a day or so and check on its progress, especially if it feels more sore. It was funny. I was seeing the doctor and showing him and felt really strange. It looked gross but good medically and I felt like I was going to faint. Being a nurse who works in surgcial areas I have seen much bigger and fresher wounds before and don't feel weird but seeing it on myself made me feel real strange. Hahaha....it is so silly.

Alan helps me wash my hair. It still has some old blood in it. It has been washed twice but the stuff really gets stuck in there....betadine as well. We have to wash my hair in sections over the bath. It feels really vulnerable and sore. After the wash though, I feel nice.

I have been wearing my new hat. Even though they didn't shave much, there was not heaps of hair at the top of my head to flop over because of the position and so my head gets cold being winter here and all and then sore. Also, I feel subconscious so I wear my new hat. Here is a picture of my new hat below. I look at bit tired though:

I have a follow up appointment with the surgeon in 10 days with the stitches and possibly to find out any more pathology results on the tumor, whether I have this Muir-Torre Syndrome and whether they got all the tumor definitely.

My platelets have been holding steady and yesterday were 134 000 which is great. I did have support platelets before the surgery so they would have been even higher. It is just nice to see the platelets holding so there will be no need for any other support platelets for healing purposes. I was really excited that my White blood cells were 3000 and my neuts were 1500 and my haemaglobin still at 13.8 despite any bleeding in surgery. They said it bled more than usual. I don't know about that because my platelets would have been higher than 134 000. I just think it was head surgery. Head surgery bleeds a lot. My clotting factors are all normal......

I want to say some thank yous. Thank you to Alan's mum, Denise, for helping us with looking after Isaac, taking him to school and picking him up and bedding him down...and for taking me to infusion. Isaac needs a lot of support when we have incidents like this. He has been a bit more teary this weekend. Thank you for your support. Thank you, Alex, for your love and support as well. It has meant a lot to us.

Thank you to my sister, Liesl, for also picking Isaac up for me on infusion day.....once again, it is great that Isaac has that family support and for us too. Thank you...it is much appreciated. Tim, we love you too. Thank you for supporting us with love and prayer.

Thank you to my sister-in-law, Angela for all your phone calls and smses and friendship and love and chats. I am greatly grateful (hehe) for that and have appreciated your support. I LOVED working with you on the gastroenterology Unit last week! Hehe...we had fun (she and I are both nurses). Darren, you are a blessing too. Thanks for your love and support.

Mum and dad, even though you have been in Africa, we have felt your love and support and thank you for your constant messages. We love you...........

Hold on everyone.....you may be thanked...hehe

Teresa Clifton, even though you have had a baby, you have been so sweet and supportive with your emails and love. Thank you so much my friend. I love you.

Jennifer gough, another beautiful person who is a part of the FA Family. I love you and thank you for your supportive emails and friendship. Thank you for the beautiful flowers that pleasantly surprised me when I got home from IVIG infusion the day after. I was so touched. We took a picture to share them with everyone.....below is the picture:

They are beautiful flowers....thank you Jennifer.

I am almost finished.

Thank you to my dear friend, Danielle....for being a great personal friend and support and a great nanny to Isaac. We love you heaps. Kiss, kiss, kiss.........and to Chris (boyfriend) who is willing to help me out with taxying Isaac and I around this Tuesday. You are a blessing.

Leah, my beautiful friend, thank you to you for the help you will be giving me this Tuesday as well with looking after Isaac and I in the afternoon! We really appreciate it. I wanted to thank you in advance.

Cassie! My true best friend. We went through school together and have remained so close throughout the years. You have been through so much with me including when Shannon, my brother, died one month after his transplant. I know you remember the day well. I love you. Thanks for your love and support.

So much support!!!! So many messages in my guestbook and emails. I love my FA Family! You guys are great. If I have not thanked you personally, please consider yourselves thanked now. It would become even longer if I continued to thank everyone. However, I wanted to acknowledge those specific people.

One more person I cannot forget.....my husband, yes.....husband, Alan. Alan we have been married for 10 years this December and you have stuck by my side through many dramas with FA. I am blessed to have you as my husband. I am so glad you have not run away from me and have been so loyal. I could not do any of this without you. I love you very much. Thank you for always being there for me.

Ok, I have said all I can say tonight. I love you all and will update soon again.

Lots of love,

Charisse

surgery

Hi everyone,

Alan here, Charisse's wife. Just updating all of her fans on how things went today with her surgery.

Charisse did very well and will spend a few more hours in hospital, but we plan to be home tonight.

I spoke with the surgeon, and he said the tumor was pretty localised, so he did not have to take an enormous section of charisse's scalp.. praise the Lord!!

they managed to shave around the area, and not a quarter of her head--to the relief of Charisse, who should be able to style her hair to cover.

As to be expected, Charisse exercised her patient rights with determination; kicking myself, two nurses, and the surgeon himself out of her room so she could negotiate how she is to be treated with the anaethetist... go Charisse!!!!

I donned the scrubs, shower cap and booties also; and walked charisse into theatre and held her hand as she fell asleep. The whole theatre knew when the G.A. took effect as she started to snore. he he he

The surgeon made an oval-shapped incision twice the depth of the tumor with an approriate margin around the outside. Thankfully, they were able to close the wound with stitches and not have to use a skin graft.

Further down the page, there is a picture of the site... it looks a little gorey in the picture, but it's not so nasty looking in real life.... or perhaps I am developing a tolerance to looking it.

Aside from all this, Charisse is feeling relatively good... a little pain (to be expected) but otherwise okay. As mentioned before, we will be heading home later tonight, then Charisse returns to another hospital tomorrow morning for her IVIG infusion!!

So that's it... if you would like to see the picture scroll down...

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Tomorrow is the Day!

Hello All,

tomorrow is almost here. It is 6.30pm at night. Tomorrow I will have surgery to take this sebaceous carcinoma of the scalp out of my head. We have all been praying that this tumor is only small. I go in at 0830 in the morning and have some support platelets as a precaution and then I am booked for 0930 but they will probably be late in getting me in. I will be surprised if they are not late. They will also take out this suspcious spot on my hand.......

I have been working on Wednesdays lately and that has provided a good distraction for me. I have needed it because I have been a bit down. I was very overwhelmed by this tumor even though it is small. I had to put my life plans on hold a little bit. I felt very discouraged. I am extremely nervous about tomorrow. I sure hope they don't go crazy with shaving my hair off. I want them to be conservative....and I will tell them again and again tomorrow to be careful because even though hair grows back, long hair is pretty special to me......it is all about how it makes you feel. I don't need to feel horrible about myself anymore than I do. *sigh*

Well, I have some pictures of when I spoke to the reception/year 1 class about nursing. I won't put up too many of them but at least you can get the jist. I didn't take the photos, the class teacher had permission to do so.

I spoke to the class about what nurses do and brought some things with me so they could interact. I had my stethoscope and some children were able to listen to their own hearts. The picture below is of me bandaging my "patient's" arm. Hehe. On the chair is a dressing pack that I brought from work. It is not sterile on the chair but they got the idea of how we set it out and use it and clean someone's wound with it. I showed them all of that and demonstrated on my patient how to clean and dress a wound.


Hehe.....I have got more photos but there are many children in the photos so I didn't want to put them all up. This is an action photo of me....hehe....my face is strange because I am talking about nursing. Hehe. I am wearing my uniform which is hard to determine in these photos but you get the general idea.

Anyway, it was fun.

Well, Teresa Clifton has her baby! A baby girl.....Violet Rose I think. Congratulations to the Cliftons! If you want to read their site, the address is:

http://cliftonclan.blogspot.com/

It is always exciting when a new baby comes into the family!

Thank you for the constant support from everyone. I am going to go. It is time for dinner. I have helped Isaac with some homework...sight words but I need to help him with one more thing before bed.

Love ya,

Charisse

Surgery Date!

Hi All,
a VERY quick update.....literally.
My surgery date is the 24th July. That is in just less than 2 weeks.

Thank you for ALL your support. It has been great and I have really needed it.

Love Charisse

Sebaceous Carcinoma and Muir-Torre Syndrome

An FA doctor has been in contact with me. It appears that sebaceous carcinoma is commonly associated with the Muir-Torre Syndrome. I don't know much about this disorder but it is an autosomal dominant inherited disorder and involved different types of cancers.......this is a vague overview....polyps, skin cancers and benign growths.....this is just SMALL info that I have found...I would need to talk to a genetic cousellor to understand it more....it is also a DNA disorder. The cancer I have is rare but when it pops up is usually associated with this syndrome......I am guessing with this disorder and FA DNA disorder that makes cancer a real problem and surveillance high. The idea of this makes me feel INCREDIBLY scared and overwhelmed. I am actually feeling a bit cross, emotional, alone, terribly frightened and praying like anything that I don't have it. I don't want FA.....but I would prefer to ONLY have FA.....not this other thing as well.
Arrangements have been made, via suggestion of a highly respected FA researcher and doctor, to have the tumor examined for this other disorder to find out if I have this other disorder as well. So that is what we will be doing next.
Please pray for me. I do feel panicked.
I need to get to sleep. I must got to work tomorrow.
Love Charisse

Surgeon

Hello People,

I had my consult with the oncological surgeon today who works with breast cancer and special types of skin cancer...and does a lot of plastics. He is one of the most experienced in Adelaide. He does "left field" kind of stuff.....obvious this cancer and FA is left field.

The appointment in itself went well. The area does appear to be quite localised on my head which, in itself, is a good thing. We will tell more when they open it up and cut it out. Most of the raised stuff on my head is actually gunk from it seeping and ozzing and getting stuck in my hair. So.....he will shave an area on my head, cut a reasonable size out...he didn't say how big exactly but that is would be a reasonable size. He is trying to do a direct close which is where they pull the skin so that it closes with the skin on the scalp...so my hair will grow normally and so we have less infection. If he cannot get it closed because of how big the amount they remove, he will take a skin graft from my upper, inner, arm...they think...and place it there and I will have a bald spot....although my long hair should cover that. I am a little upset about that but what can I do? They will do their best to do a direct close and not need another wound for skin grafting and all.

I will have antibiotic coverage and I will have platelets to be cautious. It is a day stay but because of infection and possible bleeding...they want me in overnight.

He said something about getting another MRI of the head, neck and torso....to check that it is clear and nothing has spread. I have not got a date for that....and need to confirm because he didn't give me a form.

Then there will be surveillance because this cancer can pop up out of no where for 5 years after.....so surveillance with MRI's and checking the lymph nodes every 3 months for 2 years and I suppose a bit more spaced out for the next 3 years after that. However, right now he needs to speak to my haematologist about organising blood......I am positive I won't need actual blood unless I bleed heaps, but my iron levels are a HUGE 14!!! (140 for other measurement)...that is WELL within the normal range.

I remind myself with my huge surgery in January where they opened up my abdomin for surgery...I had some support platelets before that.....and I didn't bruise or bleed at all from that! I had one spot of bruising....not dark either. I also didn't get infection....so I know the scalp can bleed a bit more but I also know my body is hardy...and as my haem said.....I have more young and efficient platelets than the ruined and spastic ones that FA usually have....and that is encouraging even though my level is lower...which would explain why I don't bleed as badly.

There were some other things that need to be confirmed before they do the surgery and are planning it well. He thinks in 3 weeks. I expressed my urgency about cancers and FA........I think he was SO shocked at the truth of FA and what I have already faced with my marrow.

I will be getting in touch with some other FA specialists in the head and neck cancer field to make sure we are following protocol for surveillance and stuff afterwards....and now. I am amazed. This guy is a top surgeon and yet he tells me that he has only seen one other case of a sebacious gland carcinoma. He said it is VERY rare! Leave it up to FA...and now I would be the first FA he has treated.

I will let you know anything else soon.
Love Charisse

Biopsy Results

Hello All,

I am feeling a bit alarmed. The doctor rang me with the biopsy results of the skin cancer on my head.
It definitely is a cancer...it is not basal cell carcinoma which would have been safer because it doesn't spread. It is called sebacious carcinoma and I have been told that it is a rare cancer and probably attributed to the fact I have FA. It is a "different kettle of fish" as the doctor put it and urgent that it comes out. Yes, it can spread but hopefully it has not. They will be able to tell more when they remove it. I am booked in to see a specialist on Friday at 3.45pm to arrange surgery. It has scared me and I am so CROSS with myself. It was being treated for a fungal infection and I knew it was not getting better....it got better, I stopped the treatment, it got worse again so I went back on treatment. I should have gone heaps earlier to have a biopsy and followed my gut......but when you have lower platelets doctors don't like to biopsy often........and they say so....not that I should blame them BUT I still should have gone with my gut and asked for a biopsy sooner and I feel annoyed with myself. This just proves that what I know about my body is superior than any doctor. My dermatologist is not to blame. It was him who said that my platelet count is fine for a biopsy.....and when I had it...I didn't bleed..........moral of the story. Go with your gut on your health with FA because the patient or parents of the patient are usually right! I hope it has not been cancerous for 12 months!

So please pray nothing has spread and that it will be removed with no problems.
Love Charisse