July 19th 2008 10:40 pm

Going Home and Port Appointment

Well, what a wonderful surprise…my sister, Karen, flew out from Washington, D.C. on Thursday night!  It was fun to have everyone together.  We are both going to be heading home tomorrow (Sunday). 

I will be having a port put in on Monday at 9:30 am.  I am really nervous about the whole procedure and don’t know really what to expect.  I am not sure when chemo will begin and haven’t heard if the anti angiogenesis drug (avastin) has been approved or not.  Sol did some research on Taxol and found that it has a history to be effective in treating angiosarcoma.  That is such great news.  I also found out that one of the side effects will be losing my hair again.  I just got it back!  🙁  But, hey, if that’s the worst of it, then I’ll take that.  I have enough hats to last a long time!  🙂 

Thanks for your prayers and support as I begin a new battle this week.  I really appreciate everything everyone has done for us! 

Love,

Monica

4 Comments »

4 Responses to “Going Home and Port Appointment”

  1. sheribaker on 20 Jul 2008 at 10:00 am #

    Well, at least all of this has allowed you some good, quality family time. 🙂 There is always a silver lining, I suppose.

    I know you’re nervous about the whole port thing, but try not to worry. My circumstances were vastly different, but when I was 12 I was in the hospital for Osteomyletus (a infection of the bone) and had a broviac put in, which is like a port. It is a longer tube (it actually hung outside of my body) that connects directly to the heart and comes out of the chest. I must say that I am glad that I don’t remember being told about the surgery to put it in – it’s amazing the way certain drugs can make memories disappear – but it was the most wonderful thing ever! One of the first nights after they put the broviac in, a nurse came in to draw my blood. I was asleep, but as soon as I felt the rubber tie go around my arm I woke up and exclaimed, “I have a broviac!” My mom still loves to tell that story.

    I know the thought of something inserted under your skin and connecting to your veins is scary, but you will be so happy to have it there. I actually thought about this experience when I read your last post when you said you could smell the drugs in your memory. I can still feel the way cold liquids would run through the tube and into my bloodstream. Because my broviac was so close to my heart, the liquids wouldn’t warm before they got there, so I could feel them going through my heart and dispersing into my body. So bizarre! But all this is to say, you have gone through so much, this will be a simple procedure and one that you will wish you had done before the first rounds of chemo. Don’t worry, just think… no more needles!

    🙂 Sheri

  2. CherylGregSimoneMarcus on 20 Jul 2008 at 3:13 pm #

    Glad to hear that Karen was able to fly out! How cool, I had hoped she could join you all.

    As for the port… well, I can only echo what Sheri said.. no more needles! Everyone that I have come across who has them say the same thing.

  3. faith.gillis on 20 Jul 2008 at 3:50 pm #

    You won’t necessarily lose your hair with Taxol. I just finished 4 rounds of Adriamycin/ Cytoxin, followed by 4 rounds of Taxol. The hair on my head, which I had lost during the AC actually started to regrow during the Taxol. By the third round of Taxol I had peach fuzz visibly covering my whole head, though surprisingly enough it made the last of my eyebrows/ eyelashes fall out. Weird stuff.
    The big side effect to watch for with the Taxol is neuropathy (numbness in hands/ feet) which can be serious. My oncologist told me to take 30 g of Glutamine a day (from any health food store) and that GREATLY minimized the effects (which in some people is very long term or painful). Not all the oncologists mention this, as it is a fairly new development but makes a HUGE difference.
    Never had a port, but I suspect it will be like having a catheter for the surgery- I was grossed out at the idea of it, but while recovering after surgery it really grew on me. Never forgave those night nurses for taking it away- would’ve put up a fight to keep it if I’d had the strength. They took it and then made me walk to the bathroom like a big girl…grr.

  4. Karen on 20 Jul 2008 at 6:17 pm #

    Monica, I have been following your blog for awhile now and have often felt the desire to respond. Every time I pray for my mother, who has angiosarcoma (of the scalp), I pray for you. We know so little about this disease as my mother has opted for no treatment. She is attempting (quite successfully) to live her life with dignity and with a brave front though I know she is sometimes scared of the future and often tired of the present.

    Words feel so inadequate. I send you my prayers, thoughts and all the positive energy your way. Enjoy your family – especially that new little baby girl!!

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