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
6 comments:
I am praying very hard for you Charisse as well as Alan and Isaac. My Family and friends are also praying so know that there are many many many people praying.
Michelle
Thank you so much for the update Charisse. It sounds like this doctor is a really good one, so even though he is not so familiar with FA or this specific type of cancer I think you are in good hands. It sounds like he took the time to listen to you and to explain things well. I also appreciate that he's going to try to avoid the skin graft even though he acknowledges that it might be a possibility.
sending you love,
rachel
Hello Charisse. Know that I am praying overtime for you during this time. I think of you often and pray for you daily. You are an inspiration to many, and your strength and faith inspire me more than words can explain. Love ya heaps.
Sorry I couldn't check in last night...wasn't home.
Praying for your family!
Psalms 33:18 Behold, the eye of the LORD is upon them that fear him, upon them that hope in his mercy;
We sang this hymn in church this morning and I wanted to share it. Am still here praying!
"My Hope is Built on Nothing Less"
by Edward Mote, 1797-1874
1. My hope is built on nothing less
Than Jesus' blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus' name.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.
2. When darkness veils His lovely face,
I rest on His unchanging grace;
In every high and stormy gale
My anchor holds within the veil.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.
3. His oath, His covenant, and blood
Support me in the whelming flood;
When every earthly prop gives way,
He then is all my Hope and Stay.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.
4. When He shall come with trumpet sound,
Oh, may I then in Him be found,
Clothed in His righteousness alone,
Faultless to stand before the throne!
On Christ, the solid Rock, I stand;
All other ground is sinking sand.
Know that I'm continuing to pray!
2 Corinthians 1:3-5 Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God. For as the sufferings of Christ abound in us, so our consolation also aboundeth by Christ.
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