Tuesday, July 27, 2010

Testy update

G'day all!

Over the last couple of days, I've spent most of a day at the hospital. Monday I had to talk to people about my operation. It sorta worries me when they are asking me what operation I'm having... and when the preop nurse tells me that I'm having a day procedure. The day before the operation I'm having an ultrasound with a wire put into my boob and also radioactive tracer for the sentinel node. That's a day procedure. I'm having sentinel node plus axillary dissection in one hit - they want to know which node(s) is the one taking the hit from my boob (might not be the annoyed one) and lumpectomy. So I have a small procedure the day before the big one.

The big one is 5th August and I am likely to be in hospital for three days.

2607_chorizema

Yesterday I got the results of my tests.

Good news is the primary is down to 1.3cm. I had hoped it would shrink further but the oncologist was ok with it. It is now nearly a third the size it was. He says it would be treated as early breast cancer if I had presented like this. It is still lighting up with the PET scan.

The lymph node is also lighting up. He still says it is likely to be reactive even though it is lighting up (PET scan shows metabolically highly active tissue - my larynx and tongue are apparently active, or it could be I lay in the room saying lalalalalalalalalalalala to myself for an hour as the tracer is taken up by my body....) I've had a "quite strong generalised inflammatory reaction" to the taxotere and apparently that can make an irritated lymph node light up.

I'm not quite sure that I believe him but I have to cling to that idea. At the same time, it is my lymph node in my armpit and I can feel the blasted thing All. The. Time. and it is quite annoying. I am sure it is getting bigger but that may be paranoia. It feels like it did when I first discovered it in late November 2009. The registrar surgeon I saw the other day (her name is Lola - what an awful name for a surgeon! She needs something like Bernadette or Roberta or Adelaide or some rather more serious name) said that the node is sitting on a muscle fascia which is why it is annoying - every time I move my arm, it wiggles the node and probably irritates it more.

As for the generalised inflammatory reaction, it means that my legs have puffed up, I have lots of sore muscles and you don't want to see the state of my fingernails. (But if you can't help yourself, look here and here and here.) I'll just say that my fingernails hurt like I hit them with a hammer an hour ago and some are loose and bruised looking. If I do something that annoys my muscles, like WALK or bend over or knit or spin or prune some roses, they get peeved and tell me a lot. My forearms are so tight that I can stretch them really easily - normally I am so loose jointed that getting a good stretch is difficult. Just straightening them out stretches them! I have subcutaneous swelling mostly in my legs - around my calves, around my knees, between my thighs and behind them. (My feet puff up if I don't wear "tight" shoes.) This affects all the muscles in my legs and aggravates them further cos there is just nowhere for them to contract - they are surrounded by fluid. Kneeling, bending over, putting on socks and pants, crouching, getting back up off the floor, all of these things take quite some time because whilst it doesn't hurt a lot, it just is difficult due to the fluid in the way. It is like I have big pads around my knees, calves and ankles and my legs just cannot bend as they normally would. The jeans that are usually reasonably loose are now almost full of leg. And I am three kilos heavier than I was at last chemo. But I can still fit into my slim pants reasonably well cos the legs are loose - I've gained a couple of kilos of fat around my hips but most of the weight appears to be fluid in my legs.

2607_entwined

Anyway, it is no fun with all this cancer stuff. Fear is now a part of my life and I have to learn to deal with it. Finding the new normal will be interesting. Worry is part of the whole deal, and that fear will never leave me, no matter if I live two years or another 40. Admittedly it will get better over time, if things go well for me. But I worry that they won't go well. If this lymph node hadn't flared and all my lymph nodes were clear at surgery, 97% of women in that situation are alive and healthy five years later. But if I have positive nodes, the survival rate goes down to about 50%, and the more positive nodes, the lower the survival rate.

I really would like to be a long term survivor.

Time will tell.

2607_hardenbergia

In the meantime I have to keep going. I am madly knitting and spinning and making stuff, cos heck, I have no idea how much longer I'll have on this planet and I have so many things I want to do yet! It is amazing how the fear of dying early has come back with this lymph node - whilst I was on chemo and had no lumpy lymph node, things were good. Now? Not so good. But next week, it will all be cut out of me. The lump, the nodes, the lot with any luck! 5 weeks later I'll be starting radiotherapy if the wound heals nicely - I have my setup date for 3 September and zapping starts a week later. After six weeks of that, we enter watchful waiting - three monthly check ups, six monthly CT scans for two years and then less often and if I reach five years, I still have to have regular monitoring but any recurrence is a new cancer. At this point a new breast cancer seems unlikely as I have no signs of anything else nasty or prenasty. So that is nice!

Also nice is the fact Spring is coming. The wattles are blooming (rather late!), various pears and cherries are blooming (rather early!) and our garden is springing into life again. Pics are from our front yard. Maybe this will be my renaissance from what has been a fairly horrible 8 months...

anon!

8 comments:

  1. yes I know what you mean. I went through something similar eight years ago (and I'm here to tell the tale ;) and although at the beginning it's horrendous and frightening and everything else, I can assure you it does get better. Try to focus on the positive (say for example the other 50 % of that statistic, someone is on that side, you know). Thinking of you!

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  2. Ow Lynne - that's all I can say --- my heart goes out to you.

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  3. Hang in there.

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  4. Yes, the fear of death is a strong incentive I feel!!! Small niggles can be so worrisome, but you have your future nicely mapped out,even if your doctor is Lola (!!!), so at least you know what's coming.
    Well done on your excellent shrinkage!!!!
    Has it really been eight months?? Wow!!
    Our days are slowly getting longer and the trees are starting to get new leaves too!!

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  5. Thanks Lynne for your comment on my blog. I'd been going to comment here but refrained as I didn't want you popping over to see my tale about my sister. I see you've read it anyway.

    Best wishes to you now. As comment above said, try to stay positive . Sounds like one of Job's comforters. Not meant like that. I hope all goes well for you. I do know some women who also are here to tell the tale thirty years later with never a hint of anything nasty apart from the first time..

    Hang in there.

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  6. I hope the 5th gets here as quick as possible and every bit of yuck is taken away. I bet that node is an inflammatory reaction - I'll keep my fingers crossed!

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  7. Wishing I could distract you with something that will take your mind off your lumps and bumps and prognoses for a while. Everyone needs a break from being highly stressed. Maybe Tarndwarncoort should be sooner rather than later?? Just to give you something to look forward to and plan for...you know with knitting and spinning projects to take :-)

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  8. Lynnie,

    Just wanted to let you know I was thinking of you. Tape Measure Sandy and I were talking about you last night at Green Planet Yarn and wondering how you were doing. Friday night knitting is not nearly as much fun without you and Great Nate. We all miss you and love you.

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