Getting Ready

I’m going to try and fill in the gaps from my last post. I got some sleep last night and was able to eat better yesterday. I am officially under 160 and have lost about 4 pounds in the last couple weeks. But really, not too bad overall.

The genetic test I had done costs $3,400. How insane is that? Apparently they go through every gene looking for “errors”, line by line. If I do come up positive, she said that when there is an abnormality it will be the same within families so if my mom and sister need the test theirs will only cost about $400 because they will know exactly where to look. Hopefully insurance will cover it, she said I will get a phone call if my cost will be over $375 so I will get some warning if I need to freak out.

The spots that lit up on the MRI are a bit of a mystery to me – she said they are low in both breasts and could be lymph nodes – I didn’t know there were lymph nodes down there so that was news. I thought the closest ones were under the arms. I guess we will find out. I’m going in Monday morning for the ultrasound first and then I will definitely get a biopsy of the lump with the possibility of the other two spots getting biopsied as well. The good news is that now that I have my own doctors, they are taking good care of me. The oncologist told me that their office really likes to stay ahead of all the side effects that they can and I should call the nurses immediately when I have any issues. So they called me in a Lorazepam to make me loopy for the procedure and some pretty serious pain killers for afterwards. So I should also be able to get some sleep afterwards.

Our 5 year old is all excited to have a sleep over tonight at Paw Paw’s house – especially with his aunt in town. They will hang with both kiddos tomorrow while mom takes care of me.

The nurse who runs the study told me that my hair would fall out gradually rather than all at once – but I read last night that the med I’m getting for the first 12 weeks causes “total” hair loss rather than a percentage so I don’t know if it’s slower because of the weekly dose or if she’s full of it. I guess we will find out soon. Thursday is going to be my chemo day. I will also get a steroid for the first round and during the second round I will have to go in the day after for a while blood cell booster shot. Anyway, I’ve got to start shopping for some headwear and thinking about a short hair cut.

I expect to have the port put in sometime this week and start chemo on Thursday, if not it will be next week for sure. When we met with the oncologist she told us that chemo is so critical to triple negative patients that she would start it in the recovery room from surgery if she was allowed. I think it’s good to start it as soon as possible. They can start via IV if we don’t get the port in by Thursday so my guess is we’ll go for it. Then I can start the countdown – 16 treatments over 21 weeks.

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4 Responses to Getting Ready

  1. Leigh says:

    Enjoy that Lorazepam and popping those yummy pain pills. I wish that you could have been given this stuff during and after the first biopsy! I’m glad that you’ll be comfortable. I’m looking forward to hearing the results of the MRI and I know that you are too. Thanks again for keeping us posted on this blog. I know that the time we hung out in person was light years ago but I still have nothing but love for you. You’re such an inspiration, even though you really didn’t ask to be one. Many people will gain strength for yours and that’s pretty amazing.

  2. Leigh says:

    I meant to say hearing the results of the ultrasound, btw. 🙂

  3. Christina Cullinane says:

    Jenn – your chemo will cause all of your hair to fall out, but it takes time for it to do so… should start around 14 days. My Mom cut her hair short as a prep, but still it came out in patches and got annoying for her so she had my Dad shave it after a couple of days – the last straw was when it interfered with her having a cup of tea without hair falling in it (and believe me her tea is important!) You’ll be buzzing from the steroids for a couple of days, then you’ll feel kinda flu like symptoms, the white cell booster will cause you to ache so take everything they give you and head it all off before anything gets severe. There are lots of good drugs to help you… take them and call them if you need something else!
    I’m guessing that the place they did your genetic testing did not have a grant to cover the cost. I had a grant through Komen to cover the cost for my patients that did not have insurance to cover… doesn’t hurt to ask call your local Komen affiliate to see if they have a local place with a grant if your insurance does not cover… it is a chunk to swallow if you don’t, but the information is valuable.
    Hugs!

  4. dietriotgirl says:

    I’m sure you already know about the hair stuff since I’m late to these blogs. But just in case, the hair loss is gradual but total meaning it ALL will fall off but not at once. You wont wake up being completely bald. Chucks missing, maybe. My fiancee is that long hair rock star guy, so he kept his hair long hoping the hair loss wouldn’t be bad. He made it a few weeks into treatment without any hair loss. Then while waiting in a office for treatment he ran his fingers through his hair and it was all over. He shaved his head by the end of the week.

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