Thursday, February 16, 2012


I do not like surprises. I have only been surprised on rare occasions. But generally I find out before anyone can surprise me. Some of my more memorable surprises- my 19th birthday in the dorms; my first pregnancy, my third pregnancy, my 30th birthday party, my cancer diagnosis and let's see...Today. 

Today was a day of suspense and one big surprise and then harsh disappointment. 

I went to OHSU to meet my cancer care team. One of my friends with cancer said it well when she likened the day to an upcoming holiday or your birthday. There is big news coming.  News just for me. Despite some rough days this week, I had already accepted that I had cancer.  Now, I was eagerly awaiting a plan. It was to be an end to these long two weeks. And a start to a journey. I was mostly calm as we checked in and became very impressed with OHSU cancer center. They greeted us and made sure we were comfortable every step of the way.

First, we met the patient care coordinator I have been on the phone with all week. Very nice, a little sarcastic, but I liked that. She lightens the mood. But yet, he has really been getting the coordination of things done. Next we met the breast surgeon. Dr. Naik. She went over the pathology reports and the CT and PET scans. She was very thorough in explaining the course of treatment. So it looks like 3 months of Chemo,heal for 3-4 weeks, surgery (mastectomy and reconstruction) heal 3-4 weeks, and then radiation. I will also need to take an additional drug called herceptin because I am HERS2 positive. OK this wasn't bad. Much what I expected after talking with some others who are going through or have gone through breast cancer.  I wanted to know when we could get started. 

Then came the big HOWEVER!  

HOWEVER, your ct and PET scans both showed some abnormality in the lymph nodes in the chest.

 HUH?? WHAT??? 

Medically speaking (and straight from the report) "A left hilar lymph node anterior to the aorta measures 6mm. An additional left hilar lymph node measures 6 mm in short axis and adjacent to the left common carotid artery at the thoracic inlet there is a 5mm lymph node with hypermetabolic activity,suspicious. There is residual thymic tissue in anterior mediastinum that are concerning for metastatic disease"

What does this mean? It means that there are other lymph nodes that appear suspicious and additional biopsies are needed to rule out these having cancer cells. If they aren't we proceed with previous treatment described. If they are malignant, then my cancer has spread and a new treatment course will be needed. The big word is metastasized. 

I met with two other oncologists as well. Dr. Chui and Dr. Duffy. (I wanted to tell my kids that Chewbacca is my dr.) Anyway, both very kind but very serious and honest. If my biposies come back positive for cancer cells, there may not be a cure. FUCK! I don't say that word...ever! But I have to say it now. There has to be a cure. 

So, I am now referred to a pulmonary oncologist to do a biopsy of the nodes near my lungs and then I will be doing additional biopsies of more lymph nodes under my arm. They want to know if the cancer did indeed spread. 

So all I can do again is sit and wait to see if this cancer is taking over my body. Not going to start treatment....yet. I don't even have a treatment plan.....yet. Don't I have to start getting rid of this stuff NOW! They say it doesn't appear to be growing, but the flip side is. I have to sit and try not to imagine the worst possible scenario........My families life with out me. Because that is the ultimate. I hate to say and I am sorry to be so honest. But it is a reality that could happen. 

I am still going to think happy thoughts. Think positive...mostly. But I can't always stop other thoughts from coming. I am walking around numb. The emotions come and go. I went to the store on the way home. (We needed milk, you know.) But when the cashier asked how my day was going I said "pretty good." I wanted to say "pretty shitty actually. Just found out my cancer may have spread." Wonder how she would have like that? But that isn't me. I will smile and know that I am strong and tomorrow I will be stronger than I was today and when they put a scope down my throat to biopsy my lung and nodes...I will be strong. 

But sometimes strong is hard. Then into my head pops Kelly Clarkson: 
"What doesn't kill you makes you stronger
Stand a little taller
Doesn't mean I'm lonely when I'm alone
What doesn't kill you makes you fighter
Footsteps even lighter

My head does some weird things. But let's just pray that the positive thoughts stay there because I don't want to think of the alternative.

love :)


  1. Oh geezus! I am praying for you with tears in my eyes. I got the news about HERS2+ from my doc too. A special kind of strain that is spoken about with a frowny face. Words were flying by me that day and only a few got stuck between my ears including "possible death". WTF? Stay strong my dear! Your biopsies will be good!!!

  2. Bad Words!!! Bad Words!!!
    and more BAD WORDS said very loudly.

    MAdonna ~ You are in my thoughts and prayers that your biopsies will benign and you can begin the plan of attack. Lots of love sent your way!!!

  3. What the crap! I am so sorry! Know that you and your family are on my prayers. Let me know if you need anything!

  4. Madonna you are a very strong person and remember that God will be with you thru it all. You and your family are in my prayers.

  5. I came by this blog in a mostly unlikely way....

    I was doing a searching for the term "concerning for metastatic disease" and one of the "hits" was the front page of your blog.

    I already knew good and well the "bottom line"....I have metastatic prostate cancer. It has decided to take up residence in various locations on my skeleton.

    I see that you have not written anything here in over a month.

    What is a month? What is a year, or a day. These words/concepts seem to mean so little to me "nowadays".

    Basically I just wanted to thank you, Madonna, for your efforts here. I'll be doing chemo at some point I suppose, even though there is no cure for what I have, none, zero, zilch....imagine that.

    Of course they no longer do the bit where the doc says "you only have 6 months to live". I just try to live each and every day/minute to it's fullest. That doesn't mean I always succeed, only that I try! Sometimes it just means dwelling on the pain, the constant reminder, and wondering what *possible* purpose it serves!....the drugs don't really even do that much to numb it out. Of course I am a bit of a wimp, even though I was burned from the waist up in an industrial accident when I was 18. Life can bring some funny stuff sometimes....I had a genuine "out of body" experience while riding in the ambulance. I've offered to tell various people about it...nobody has ever taken me up on the offer!

    I've reached a level of acceptance about this stupid affliction that I would never have thought possible. This cancer will kill me unless something else does first....for sure....absolutely positive. And ya wanna know something? I could give a shit less on one level....the strain it puts on those who love you is ridiculous. They try to understand and say the "right" things, but more often than not there IS no right thing to say, it just what it is, and it is up to each of us to make the best of it or just give up and die without a fight.

    Personally I plan to stick it out to the bitter end. I know *exactly* what to expect, it won't be pretty, or painless, but I am determined to be the *best* example of someone "dying from cancer" that I can. I want my wife and son to be proud of me for being as strong as anyone possibly could be.

    Well Madonna, wherever you are and whatever you are doing, please know that your efforts here brought me some distraction from my own temporary suffering....that's certainly worth something. I hope you will feel up to writing again soon. I know how it is to NOT feel like writing. I've felt that way myself quite often lately!

    This cancer business sure can be lonely as hell.

    I am hoping to get involved in some volunteer hospice work...I think I would be good at it!

    All for now. I was forwarded something today that I found quite inspirational, if a bit "corny". It's rather long though, and you will have to tell me it's ok to post it, or you could send me your email and I will send it to you personally...I don't do facebook or any of the "social network" stuff, but I *think* I have a google account....pretty sure they own everything nowadays don't they? :-)

    My best wishes for you and yours....truly.

  6. I had to do a good bit of editing to get my reply down to the limit of 4K or whatever it is. Parts seem fairly disjointed...sorry bout that!

    I did discover that I have two blogs of my own. Maybe I will pick one of them and try to write something worth reading?

    Or not....