Coming up for air - this is where I am at???

[Lyn]

Where do I begin, I thought I had posted before I went off air but can't find them, I have been unable to do much, well here goes, delaying radiaiton in case chemo doesn't work. Started Gemzar/Txk/Zometa/ Herceptin early this week. Stopped taking steroids bad move, I felt like I had been run over by a steam roller. Had Echo done, and as usual I set off all the bells and whistles. Seems my LV is down to about 46%, never been under 50% since I started in early 2001, that isn't the worst of it, they are not happy with the fluid build up in my pericardium and suspect the worst, had the echo doc, then the registra, then a specialist who spoke to my onc Boris, had it been available I would have been admitted then to drain and test the fluid, apparently not a lot but double last time but I am not retaining fluid to the lungs so not the heart, so Tuesday is scheduled for test and see, I am staying in hospital and of course Tuesday is supposed to be my next chemo session. My blood pressure has been low ever since I returned from the Cruise from Hell February 26, 90/55 and that was after I had been reved up walking a big distance from the car park, so it must have been lower before, docs do not feel it is related to my heart medication, but reduced it by 6.5mg anyway,I am still on eostrogen Blocker, I won't come into any bargains with that again, making it grow, if my arm hadn't stopped working they never would have found the tumour until it was too late, I see the orthopaedic specialist on Monday, my once bad now better arm is aching so due for more hydrocortosine, the pain is breaking through my 20mg morphine, anti inflammatoy nerve blocker, I don't seem to be able to feel the lumps under my arm any more but as not tests were done in the beginning I really don't know what is shifting them but I suspect it is chemo, that bit is good news but also means we know what it is/was. So I have been walking around like a drunken sailor in a fog since my first day back on land and torturing my toes because I can't feel them I am now on anti-biotics, penaccilin and I have orders to wear closed in shoes, good thing it is coming up to winter. So I had my pity party yesterday, I told everyone how ungrateful they have been and that I am only staying alive so as not to disrupt there life style, works for me a good reason to keep fighting on, I also made the oncs stipulate that the neck area is just pressure and not in the bone or chord, I can live with that, as long as it isn't on the march in my pericardium, don't really know if anything will be done different, just drain the fluid and let me go on my merry little way with chemo. Everyone has to get use to me talking 10 to the dozen and doing housework in the middle of the night, otherwise they will have to roll me around the house because I won't be able to move myself, I just have to watch what I eat, not like the first time, I was like a termite, if it ws in front of me I ate it, this time I seem to be craving fruit, yoghurt and fried rice.. I shall keep you all informed.

Love & Hugs Lyn

[Lyn]

white blood cells are low as well, so all stacked up against me.

Love & Hugs

Bits me me laugh, bits filled with me with admiration, and bits made we want to cry.

Have you thought about trying and find a newspaper to do a regular slot for on your very individual outlook on BC and its impact on life.

RB

[tousled1]

Lyn,

I can't and won't say that I know what you are going through. I will say however that you are a strong individual who inspires a lot of women on this board. Just try and think of yourself for a change - do what you want, when you want to do it. Hang in there, better days are around the corner.

[Sandy H]

Lyn you certainly, deserve the title, "Living Legend". You have been through so much and yet keep on fighting. I will be praying for you that Tuesday will end well for you and you will get some comfort and good news. hugs Sandy

[Lolly]

Well, Lyn, as usual you're up to your eyeballs in "it", and I mean that in the best way possible...that you're up to keeping those around you on their toes, and I hope they all know that we're all helping you keep an eye on things from our neck of the world too, so that should make them double sharp!
Fruit, yogurt and fried rice sounds good to me; be sure and throw some fresh minced garlic into the rice and fry it in light olive oil

<3 Lolly

Lolly - "light olive oil". I am not sure what this is. I posted some information on the contents of refined olive oil on the site earlier. Some refined oils are up to 50% omega six. The olive oil with the lowest omega sixes were the cold pressed virgin oils.

Just in case of interest.

RB

[Lolly]

RB, I had read somewhere that a good quality "light" extra virgin olive oil was nutritionally equivalent and better for cooking as it has a higher "smoke point", the light designation referring to it being filtered but otherwise the same. But now I can't find that reference, and in fact have come across many references warning against "light" olive oils as being inferior nutritionally. My mistake, better to stick with good quality E.V.O.O.

<3 Lolly

[Barbara H.]

Lyn, Keep on fighting and thank you for sharing your stories.
Barbara H.

[Lyn]

WELLL WELL WHERE TO BEGIN? Light at the end of the tunnel, OK going backwards, had second dose of Gemzar with other drugs, I have been pretty much wiped out the last few weeks so hopefully you will be able to get your heads around all of this. Hospitalised again for low blood pressure, Left ventricle regular echo showed down to 46% so my onc thought the worst, arranged for me to have heart biopsy, I was admitted with all normal BP, pulse. oxygen and temperature, on paper I don't look sick, red and white cells still a bit low but not a concern, liver function, kidneys and others all ok, blood pressure back down again to 90/50,no one seems too concerned, only me and the family when I bump into them. My onc told me he was cancelling my chemo, because things can go wrong, I was OK up until then so I lost it for a couple of hours. Got down to the lets get stuck in and specialist said he didn't feel it warranted to do a biopsy on the result of the CT as he could do more damage than good so he wants to just do another echo in a couple of weeks, wouldn't have thought CT and Echo would be so different, I still had my herceptin this week and stongly feel positive that there is nothing there to look for, the lumps under nmy arm also seem to have gone. I believe I may have had the beginnings of Pericardus again but because I was already on anti-biotics and NSADS, the protocol treatment I had the first time, that we stopped it before it got full blown, well that is my diagnosis and I am sticking with it, so I am happy about that, it took longer to get out of the hospital than to get in and they still hadn't caught up to me with my chart, good thing I knew what I was doing, many phone calls were made and Boris my onc agreed with them also, I saw him at chemo and I told him I am an alian programmed for things to happen at certain times and when they can work me out they get to meet the intelligent life forms. I have been in so much pain, worst is fractured shouder, which was apparently my collar bone I fractured in October, so when I fell on the boat from hell, I chipped another part of the bone off, I top up with Ordine if I need to. Radiation still on hold if needed, so we still have a lot of options to get me back on deck, including the new trial drug from Melbourne, and sober of course, I will be cured along with all of my lovely friends, no FAMILY, on this site. I am up on the steroids at the moment so I tended to ramble on a bit, at least I didn't get out the vacuum cleaner. Oh and as for the family matters with my kids, I won't even go there at the moment, some rest I am supposed to be having.


Love & Hugs Lyn

[suzan w]

I really love reading your posts...you are an inspiration to us all! And proof that a good sense of humor is priceless! Keep up the good work!!!

[Susan2]

I love reading your posts because you have such a wonderful outlook.

Take care,
Susan