CANCER SUCKS.....

But it is a little bit funny.

rock and roll chicks

rock and roll chicks
this is me with spiked hair. It's growing in. Not the greatest picture of me, good one of Cindy but this blog is not all about her!

Thursday, July 29, 2010

I can't complain but sometimes I still do

i am so tired. This will be a short one. I have been "binge working." A trick of nurses, especially those of us who are not on the books for 40 hours. Work a shitload of days in a row and then you can get a bunch off. That is how those of us with minimal sick and vacation time get vacations. Course, with radiation every weekday, my time away from home was limited to the weekend. We went to a beautiful beach in Yarmouth, staying with friends of Cindys. Well now we are all friends of each other. This was one of the very few times I have hung out with men who are the category of: OLDER THAN ME. How could they not be dead of old age, you ask? Honestly, I don't know. I made a few observations about the weekend and they fit under the category: Reasons why I hate to hang around with people my own age. However, I am too tired to write all that stuff, so you will have to wait. Sorry. You know how I hate to disappoint my thousands of followers. I will write it tomorrow. And I must say that if any of my many followers happens to be a guy that is older than me, you know who you are and you are an exception. As you have the same level of immaturity as me, when I am with you I do not feel like I am with a guy older than me. In fact, I think we are both thirty and have the scars to prove it. But most of the OLDER THAN ME guys would not know how to find a blog anyway,and probably even if they did they would not know what to do with it. I just happen to be one of those older, state of the art women who have their fingers on the pulse of the next big thing.

Yeah right. I am going to try to cut and paste the email from my nurse practitioner that we just did today. It is a great indicator of how bad communication can really fuck you up. That is something that is hard for me. I am a nurse, and granted the the vast majority of my nursing has been on a psych unit, I am not without a basic understanding of medical illnesses. I have certainly worked with oncology patients both on a psych unit and a medical one. So how do i go for weeks believing something that was not true about my body- my life! I am walking around believing that I had chemo-resistant cancer in my lymph nodes. And it took me weeks to even frame the question to ask to straighten this out somewhat. Not completely, but when I go see the nurse practitioner next week, I will look at everything from the lab about my lymph nodes. Can't believe I just sat back and let the doctor be in charge and just accepted what he said without yelling, "WHAT THE FUCK ARE YOU TALKING ABOUT!!!!" On a side note, I read an article in the Boston Globe on Sunday (the old guys bought it.) about how psychologists can glean information about the personality of a person by their blogs. It definitely said something about people who swear a lot but I forgot what it was. Something about being the best and most loved members of society? Yeah, I think that was it. Well it was a stupid article and I did notice that the newspaper was considerably thinner than the Boston Globes of my youth, before everything went on line. So they were just jealous of us successful professional bloggers (I earned $1.40 last month from the ads on my blog,) taking away all their readership. Too bad, though because there are some good points about a Sunday newspaper. You can bring it to the beach and not worry about it exploding from the heat or getting destroyed with sand, as you would a computer.

So anyway, without further ado, my email:

LN's = lymph nodes, Dr. E medical oncologist, Dr. B. radiation oncologist, who I like better,

Of course it is backwards, so you have to read it from the bottom up. The names have been changed just in case.

Thanks
See you next week
MBS

Marybeth S, MS, ANP-BC, AOCN, ACHPN
MGH Cancer Center
Gillette Center-Breast Oncology
55 Fruit St.
Boston, MA 02114-2617
617-643-4271





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From: Oleary, Barbara A.,R.N.
Sent: Thursday, July 29, 2010 2:01 PM
To: S, Mary Elizabeth
Subject: RE: A question


It definitely helped. I appreciate it. Sometimes it takes me days to come up with an intelligent question that I should have asked at the appointment. Thank you for answering it. See you next week.



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From: S, Mary Elizabeth
Sent: Thursday, July 29, 2010 12:08 PM
To: Oleary, Barbara A.,R.N.
Subject: RE: A question


Did this explanation help or raise more questions.
Hope you are tolerating RT well. Dr. Booboo will take great care of you.
MBS

Marybeth S, MS, ANP-BC, AOCN, ACHPN
MGH Cancer Center
Gillette Center-Breast Oncology
55 Fruit St.
Boston, MA 02114-2617
617-643-4271





--------------------------------------------------------------------------------
From: Oleary, Barbara A.,R.N.
Sent: Thursday, July 29, 2010 11:47 AM
To: : A question


Thank you Also the radiation Doc does not want me taking xeloda at least for the moment because they have to radiate the maximum amount of lung tissue allowed because I have a wierd body.



--------------------------------------------------------------------------------
From: S, Mary Elizabeth
Sent: Thursday, July 29, 2010 10:00 AM
To: Oleary, Barbara A.,R.N.
Subject: RE: A question


Hi Barbara,
I can only imagine how difficult it is to wrap your head around some of this information. I will try to explain the best way I can.

Let me start by saying that your initial staging was based on the initial pathology information available based on tumor size (T1c and sentinel nodes 2 positive nodes) is technically a Stage IIA. The decision to treat with chemotherapy and then perform the axillary dissection where an additional 6 nodes were positive, led to change in staging to Stage IIIA.

To Dr. Eggsalad's point, you are surgically cancer free and the lymph nodes were involved prior to your chemotherapy and it is fair to say that the presence of LNs helps to assess risk of recurrence and influenced Dr. Egghead's decisions about radiation therapy and use of Xeloda. It is somewhat uncertain to know exactly what pre operative chemotherapy effects were, but I suspect, that the chemotherapy had some effect on the LNs based on the path report. You have had now what we would call definitive surgery and will have had the best state of the science treatment. Additionally after RT/Xeloda, adding endocrine ( anti-estrogen therapy) is instrumental in further reducing risk of recurrence.

There is every reason to hope that we can significantly reduce your risk. So in summary, the statement that best reflects your situation is the one you remembered from your conversation with Dr. Eggsflorentine

"No, it's no big deal. You don't have any more cancer in your lymph nodes. We took it out during the surgery. The positive lymph nodes just mean there is a somewhat higher chance of your cancer recurring at some time."

Barbara,
I hope this helps and PLEASE don't hesitate to call me so we can discuss and I can answer any other questions this raises for you.

Take care.
MBS

Marybeth S.
Gillette Center-Breast Oncology
55 Fruit St.
Boston, MA 02114-2617
617-643-4271




--------------------------------------------------------------------------------
From: Oleary, Barbara A.,R.N.
Sent: Thursday, July 29, 2010 6:20 AM
To: Sr, Mary Elizabeth
Subject: A question


Hi Mary Beth, I am Dr. Egghead's patient. I met you last week and have an appointment with you on the 4th. I have a question that I wondered if you could answer before then. I have been kind of confused as to what's going on with me exactly. I didn't really have a coherent question to ask Dr. Egghead on my last visit, but i think I have one now. And you can probably explain it better. I speak nurse, I do not speak Oncologist. Here's my question: When I first learned that my lymph node surgery showed that I had 5-6 positive lymph nodes, I thought:

-*Shit! I still have cancer after all that chemo. I must have a chemo-resistant cancer in my lymph nodes.

When I met with Dr. Eggface he said (or at least I heard:)

-*No, it's no big deal. You don't have any more cancer in your lymph nodes. We took it out during the surgery. The positive lymph nodes just mean there is a somewhat higher chance of your cancer recurring at some time.
1540052

Still, I thought I had had cancer in the lymph nodes that the chemo did not take care of. Now after looking at some stuff on line about breast cancer, I think:

-* maybe you can have positive lymph nodes without it meaning that there is cancer there that is not responding to the chemo.

So now I am wondering if any of this makes sense to you and if so which, if any, of the 3 statements marked with a -* is correct. It is so hard for me to figure out stuff about this stuff sometimes. It took me this long to even come up with a coherent (hopefully) question to ask. And of course now that I have figured out how to answer the question, I want it answered immediately and cannot wait til the 4th. So, if you could just at least explain the difference between having positive lymph nodes and having active cancer that would be great. And also if you could tell me how I got to be a stage three? I wasn't even sure when I went from a one to a two.

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steven tyler in a red sox shirt!!!

steven tyler in a red sox shirt!!!
not bad for an old guy