Tuesday, January 12, 2010

Bzzzzzz. The pros and cons.

I did it again, mostly. Today worked like I thought it would, minus the dinner portion of the night. We went to dinner instead. I needed a quiet place to talk to Craig about my doctor appointment today. I didn't want us to be interrupted with all of those things that inherently get in the way of meaningful conversation at home - like dishes, laundry, cleaning of clutter, etc.

Here's the scoop:

Apparently when the surgeon removed all of the lymph nodes in my chest there were actually two (2) tumors in there - both cancer. None of the other nodes were cancerous or had tumors. So, they appear to have gotten all of them! Good news.

My oncologist, Dr. Akerley, proceeded to tell me how rare my cancer is. Basically there are variations of cancer that go from the most common to the least common in a kind of inverted pyramid. He said my kind of cancer is the extreme tip of the bottom of the pyramid. It is so rare, there is no official name for it. He called it a neuroendocrine tumor, Cushing's tumor, or something else I forgot. He said those are just what they would describe it as, but officially there is no name for what I have. I asked if he knew what stage it was - he said it was a Stage III Cancer.

A Stage III Cancer is one where the tumors or cancer has spread to a lymph node that is no longer in the initial place the cancer started out in. So, when I just had the one tumor in my lung, that was Stage I. If the lymph node was inside the lung and had the tumor, then that would be Stage II. Because the lymph nodes with the tumors were outside of the lung, it is Stage III.

Because this is so rare, there are no studies on how to treat postoperative removal of the cancerous tumors and all of the lymph nodes. So, Dr. Akerely said they (all of the oncologists at the Huntsman Cancer Institute/Hospital) look at the treatments for the more common forms of cancer in the chest to see how successful they are. This is how they decided on my treatment. Radiation AND chemotherapy.

Next week I will meet with yet another new doctor, a Radiation Oncologist named Dr. Kokeny, I think. She was one of the doctors involved in deciding my treatment, so she knows my case well. She will build a map of my chest somehow to use for directing the radiation to the right places. The radiation will last 5 to 6 weeks and I will go five days per week.

After I have my chest all mapped out and the date for beginning radiation is set, Drs. Kokeny and Akerley will work together to arrange all of my therapies. My chemotherapy will be administered via an IV. I will go through four 3-day infusions (12 weeks). There will be three weeks between infusion sessions.

The side effects are many, some much more serious than others. For example, with the chemo, my white blood cell count will drop tremendously within about 10 days after the end of each session of treatment. During this time, I have to be extremely cautious about getting sick. If I get a temperature over 101, I have to call the hospital and rush there to be admitted, where I would then have to stay for 2 or 3 days. That's a more serious side effect I have to watch out for. The one that will definitely occur is the hair loss.

I won't be bald. The hair comes out in funny ways and my hair will just look patchy. I told Dr. Akerley that I had my husband buzz my hair last spring when I couldn't stand it any more - the losing of my hair. Luckily, I don't have a funny shaped head or anything. This is one aspect of the therapy I am least concerned about. I have a lot of hats, so that helps. Also, I will save about $50 a month + between haircuts and product. It will take no time to do my hair and it will dry in an instant!

So, I wasn't really sure if I could still go to school AND go through all of this. I mean, 12 weeks is a long time and we haven't even gotten started on that yet. School only lasts 16 weeks. I was very unsure about whether or not I could do all of this. I am not super woman, no matter how some people try to convince me I am... But I thought about it more and realized, this is not something I just want to do (going to school) but I NEED to do it.

I NEED to do something else with my time other than sit around and worry about my health all of the time. I need this chance to get away every day to focus on something else, something I have control over. Unlike work or home or health, school, for me, is totally controllable. I like it. I actually enjoy it. I'm going to stick with it and come May 7th, I will graduate from all of it - school and all the health issues I've been dealing with for almost a year now.

1 comment:

  1. I have a neuroendocrine tumour that spread through lymph nodes after surgery, although mine was located in my pancreas.
    In the UK (where I live), Sweden and Italy this is sometimes treated through interferon. I've been on interferon for 3 1/2 years and my tumour is pretty much under control: localised and not spreading.
    The side-effects of interferon aren't as bad as chemo, plus they don't preclude you having chemo at a later date. You should also challenge your medical team about how long the chemo is successful for. In most gastro-intestinal NETs the chemo is good for 2 years, then you need to start again.
    Ask your team to take a look at interferon research. There's a lot out there, although trials have been very small because the tumour is so rare.