Come in! Go away!

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I spent the better part of the morning preparing to exit my house. I felt like an alien in a strange world driving along in Tamara’s car. I wanted to hide. I was not at all interested in the prospect of talking to anyone. Agoraphobia, that is my self-diagnosed condition. Well…I do not really want anyone here either so I have a condition in which I no longer really want to be around people especially groups of people. Maybe I will get over it.Maybe not.

Today was the first of three with back to back appointments in which I am gaining a better understanding of what transpired at the surgery. So as best as I can explain it here are the results. So the good news is that the cancer did not involve the chest wall or muscles…I don’t think.I think that’s what she said. There were a few surprises.

1. Even though the doctor took an extensive mass from underneath my left arm the pathology claimed there were only 3 lymph nodes in that mass. All of which had cancer.

2. Despite a mammogram, 2 MRI’s,3 cat scans, and 2 petscans…..I had breast cancer on the right side as well. Specifically, an invasive ductal carcinoma with lymphovascular invasion. That’s right in case that slipped you by…it is not the same cancer. I had a different breast cancer on the other side. Lucky me I wanted to try them all. So it is a good thing that I pushed to take both breasts. I would be dead.

3. I may not be HER2+. Which means I do not require herceptin. They will review that part of the pathology again to make sure. It’s possible that parts of the tumors have/had different receptors that were either positive or negative. Its technical I guess.

The other thing is that I did not get clear margins so I will have to get more surgery before I am able to start radiation. I will know more about that tomorrow when I visit the surgeon. I do not know anything more than this so please do not bombard me with questions about the surgery. I will post about it though. Also, they took 18 lymph nodes out of my right arm and two had cancer. So that’s good I think. I am not looking forward to more surgery but I have been told that it will not be as invasive as the first one.

I am really at a loss. I guess I should be relieved or happy. I am upset that I can’t start radiation any time soon. Also it will be even longer before I am recovered from surgery. It is taking quite a toll on me. And I feel very hollow and distant from my baby and husband. All of which leaves me a bit depressed. Each day is a little better. But now just thinking about them cutting into me is a truly disturbing thought. I was upset by giving blood through my port today. I hate the smell of alcohol and anything medical. It turns my stomach.

Speaking of stomachs….I lost like 20lbs. Which is probaly the weight of my boobs and some water I was carrying around post chemo. I was saying how happy I was to be on these antibiotics that make me nauseous because I am not really eating. That upset Joann Hulnick{ patient advocate} so she is contacting the nutritionist for me. And a therapist as well. Maybe she can help me with my agoraphobia. Also a lymphedema specialist is coming to the house to help me with that as well.

OK. I am now officially sick of myself. You know everything. I love you all. Ciao.

8 Responses to “Come in! Go away!”

  1. LuLu says:

    I don’t have much to say other than I love you. If you think of anything you need, as tiny as it may seem, please let me know. I’d love to see you when you’re up it.

    Lately I’ve had Matthew 17:20 running through my head almost constantly.

    “I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there’ and it will move. Nothing will be impossible for you.”

    Love you.
    xoxo LuLu

  2. Dina says:

    You may be sick of yourself, but we are surely not sick of you. Some of the results sound promising. Confusing, but promising. Hang in there. I don’t know you well enough to offer to watch Clay or come to your house to help. Surely I will buy a poinsettia, but is there anything else I can do?

  3. leann says:

    cancer sucks. i don’t have anything to say that hasn’t already been said or anything to make this all go away. except this:

  4. leann says:

    whoops, my picture didn’t show up. i’m not that internet savvy. it was one of those cheesy posters of a kitten hanging onto a branch saying “hang in there”. (does that really cheer people up???)
    anyway, i love you and am praying for you.

  5. Aimee says:

    “I had breast cancer on the right side as well. Specifically, an invasive ductal carcinoma with lymphovascular invasion. That’s right in case that slipped you by…it is not the same cancer”.

    Andrea- I’m no expert here, but I’ve had 4 years of IBC education, so I know more than the average person. What you’re describing is exactly IBC! So it IS the same cancer- you had IBC in both breasts! The fact that you didn’t get clear margins is not what we would hope for. Most likely you will get more chemo (maybe before or concurrently with radiation, but surely after). They say that the state of affairs at the time of surgery is a prognostic indicator with IBC. But, don’t let that discourage you- if you are not HER2 positive that means no Herceptin (or Tykerb), which could seem like a scary thing, but actually means that the cancer is not quite as aggressive as it could be. I don’t know what neoadjuvant chemo you’ve had, but if you’ve had taxol, it’s been all over the news that taxol isn’t as effective with HER2 negative cancers. Without clear margins you’re going to really have to be vigilant about watching for skin mets. And as for more surgery, please seriously consider that- trauma to the area that already has cancer in it can really exacerbate spread as the lymphatic system works overtime to heal the trauma. Sometimes leaving tumor in place is a better choice, as surgery won’t remove it all and a systemic treatment would be necessary anyway. This is why with Stage IV cancer they usually don’t even do mastectomy.

    Is your oncologist doing Circulating Tumor Cell counts? It wouldn’t be wise this close to surgery to do that, but at some point 6 weeks out or more, you may want to push for that as a regular part of your clinical work-up.

    I am sure you’ve got to be very nervous and scared with the results not being what I’m sure you wanted and being delayed in radiation. If the delay runs past the normal surgical healing time, is there something else you can be doing to help you feel more in control- like take supplements of some sort? There are lots of anti-cancer stuff: antioxidants, curcumin, PeakImmune4, etc. If that’s not your cup of tea, why don’t you ask the people who are helping you to juice for you- carrots, celery, etc. And if that’s not your cup of tea either, at least go for a daily JambaJuice (with immunity) and buy some V8 at the store to drink down daily. I think if you focus yourself on doing the things you can do to keep yourself in the boxing ring you will feel better and your mood will also improve.

    You will get back to yourself, even if a “new self” eventually. It will take time. Heck, you’re still under the effect of anesthesia! Give it about a month and you’ll notice a marked difference between then and now.

    Thanks for continuing to journal here, even if you don’t feel like it. It’s an important way to chronicle your journey for your kids and also helps me to know how to pray for you………..

  6. Kristine says:

    Andrea,

  7. Wendy says:

    Andrea, Love you girl friend. Hang in there.

    Aimee, Thank you for your public comments. Your understanding, explanations and encouragement of Andrea are helping me to gain a better understanding of what is going as well.

  8. Andrea,
    I have to say that after spending some time with you yesterday I began to forget what all you’ve been through! You are still beautiful, funny, sweet helpful and motherly with your children, and willing to help an old friend with a sticky situation. It was just two old friends having a conversation. It reminded me that you are still very much yourself, just fighting something new. Thank you for taking the time (when you are going through hell) for answering questions and offering suggestions to help me be a better mother and to raise a decent child.

    I hate that the doctors have to do another seemingly unnecessary surgery, it kills me that they couldn’t get everything at once. I hate that after all those tests they assured you that your right breast had no cancer. Thank God that you had the strength to tell them to remove both!

    Thank you to all of your children for allowing me to steal some of your mom’s time.

    I love you, Amy