Before I begin, I would like to let you know, that I will continue to post photo's from our much needed trip ~ away... it was extremely relaxing, beautiful, warm, and peaceful. I know, without a doubt, where my heart lies. I found a beautiful beach on the last day of my stay ~ about an hour south of Cocoa ~ which had some very nice and friendly resident's. The ocean was a marvel; beautiful shades of aqua and blue, with a crisp clearness. We found some of the best seashells! Brilliant colors and textures ~ and some awesome small conk shells! Without a doubt, this is where my heart of all heart lies.
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Alright ~ now, to post the news from today's visit with the NIH. I am still trying to absorb it all... the "shock and awe" ~ stage...
To begin, there is some activity in my upper thigh where my last biopsy was performed. However, it is hard to determine ~ because the sample/tissue may not have been a good one ~ and it may be lighting up due to scar tissue...
Next ~ the lump that I mentioned in my groin ~ which has become relatively large, and which is causing me some extreme pain ~ is indeed Melanoma. It is in the lymph nodes within the lump.
And finally ~ the 7mm of tumour that was left in my pelvis from the last surgery ~ has definately grown. It has become of some concern... it has grown enough that it is enlarged and entangled around even more arteries/nerves; so that... a) it may not be removed surgically b) it is causing the fluid in that area to push up against my bladder ~ and I now have an infection, which needs to be cleared up with antibiotics ~ asap c)the pressure from the fluid combined with the added new lump ~ is causing the blockage of my lymph nodes and slowing them down ~ which is causing all the swelling in my right leg.
So, what does all this mean? ~ basically ~ Dr. Yang said that the lump isn't a main concern at this time ~ it can be surgically removed, if necessary. However ~ the bigger problem/issues lies within the pelvis. The tumour that has grown and entangled itself even more... which is causing and will continue to cause more problems... needs to be taken care of.
My only option... is the TIL treatment.
The doctor called the lab while I was there... and they are working on growing my tumour cells to see if they will combat active melanoma in the lab setting. He said to give them about 1 week for the results. If, it works... I will be called to come in and do the TIL treatment within the next 3-4 weeks. If not, he will be looking into other alternative's similar to the the TIL.
The TIL is ~ to say the least ~ rough. I was given a packet of info and orally informed of the possible side-effects. I will Definately, loose all of my hair. I will be extremely sick ~ vomitting/nausea, etc... all the good stuff. But, I will be monitered well. There is a possibility of bodily function damage ~ kidney, livers, etc. There is also, a small percentage change that I may have permanenet brain damage. About 1 in 100.
So, there it is.
Basically, as the Dr. stated... if I choose not to do the 3-4 week long intense treatment... the tumours will continue to grow and spread...with the inevitable. This is the best chance and option that I have at the moment.
Am I scared?
Scared to death.
Absolutely.
Do I want to loose my hair?
Absolutely not ~
but, like the doc said: "it will grow back"
and the possibility of further complications/damage... well, that outweighs the alternative ~
I do agree with the doc...
deep down... I know, that the situation I am in... is not good. not good at all.
So, for now... I am going to pump in the antibiotics... and take the pain meds as needed... my immune system needs to be up and ready...
before they wipe it all out!!!
I've got 3-4 weeks to try and take care of some personal issues and prepare...
(I most definately need to get a cd of the ocean to take with me during treatments!)
3 comments:
I am so sorry that you are having to face this rough choice and treatment. I'm glad you got your time away and I'll be sending out a ton of good thought and prayers for you. As ever, Carver
Hi becky
This is so unfair, I hate that you have to go through this fear and stress, the thought of such medical trauma, but if it cures you it is so worth it and some people are cured, just think that you will be the one. I can only imagine the fear you must have to carry around with you all the time must be so scary, I imagine the fear of medical intervention that is most times making you sick. but maybe you won't get sick, some people don't , my dad had chemo and didn't bother him at all, he got a little hand and foot pain, he ate, he felt good. but the day the doctor told us it wasn't working, well that was the most horrible feeling on earth, sometimes I wonder if I should have just taken dad when we knew it was in his liver and brain,lymph nodes groin and underarm, I wish I put him on a plane and took him to a tropical paradisem drinking, soaking up the sea breeze and just having fun, we spent 6 months of hospitals, one november day we were waiting for our car it was cold out I had dad in his wheelchair in front of the door and when the wind would blow he would put his face into the wind, I said " dad does the wind feel good ?" he loved it, I said well at least these treatments let us spend every day together , and he said, "yeah but I wish somewhere fun..maybe a movie" so simple his request, yet so impossible we were racing with the clock ,looking for the next miracle,two weeks dying in the hospital was horrendus,I just wanted to grab him and take him somewhere, but I was too scard, but I feel every decision I made was bad, the doctors don't help much with the decisions, you are young and strong and you can take it,stay positive , this life is so short ,so fleeting ,filled with so much beauty, the sunset, snow falling, palm trees, babies, so much, something created all this for us, I don't know if I would call him god..but something ,why do we feel these feelings of love so deeply if they just end, where is my dads; energy , that made him , him, his voice,his laugh, I can still hear him laughing ,sometimes in the movie we would get embarrassed, the last movie I saw with him was the departed , we are from boston so dad loved it, I looked over at him during the movie with his mouth open ,laughing, at mystic river when the daughter was murdered, looking over at him with tears going down his cheek, crying at the fireworks at disney and saying he got chills when he saw minnie mouse, we would go on the rocking roller coaster and he would reach his hand out of the harness so he could hold mine, they we would get out and run to do it again...how could he be gone??>?? where is it? where is the energy that made me love him so deeply so powerful. It has to go on , why would we feel these feelings of love and sadness?My dad died jan2 08, he was alone because the nurse told me to go home to rest she would call me at once if anything changed ,she knew I wanted to be with him,I told him when he go to the other side to let me know,send me a sign, his funeral was january 6 08 , in boston in january, my thing with dad was thunder and lightening storm, i was scared when I was like 5 ,I would go into his room to get him, he would take me to the front door to watch the lightening and count to the thunder came. that meant how many miles it was away, I mentioned that in an email last yr and dad cried , sometimes just remembering living with my parents and sisters and brother seems like another life time,,but sometimes it feels like yesterday, the night of his funeral I took ambien, ativan wine and a percocet, yes I am lucky I woke up at all, not my intent ,really, but anyway at around 3am I woke up to the loudest thunderclap I have ever heard, thunder and lightening, without rain, it was bizarre,,my whole family was awakened,it went on for half hour, I think I got my sign,I don't know why these things happen I can't explain them, but thunder in boston in january is crazy, love is out there in the energy,the spirit that made him , him, I see the beauty of seasons. trees all dead looking, spring they regrow ,more amazing then the year before, infinity , nothing ever ends, when you think of space never ending it makes you think , yeah there could be somewhere we'll all meet up with, love can't just end,.why would we feel it? I am sending you thoughts of courage, contentment, love,a beutiful snow fall,the birth of a baby a whole new human being who we just love , a little person you just meet and feel that love like a tidal wave, becky I know your are afraid and I don't blame you , you must be scared for you and for your daughter ,when we become mothers we have to fear who will love them like I do, why does my kid have to go through this ,I will pray you are the one to breeze through treatment beat this damn desease, you can email me any time
Hello, I have been following your log through MPIP. My husband finished the TIL cell with Yang two Thanksgivings ago. He is doing great. Let me know if you need some more info.
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