The Decision Point

So Joe and I saw Dr Parker (my oncologist) this morning. She went over my pathology report with me and it had good news and not so good news. Of course we all hoped and prayed for no evidence of disease or "complete pathological response" to the chemo at the time of surgery. As we know this did not happen, it would have made a huge impact on my life expectancy as well as make these next decisions much more clear. The good news (that we already knew) was that it did respond to the chemo and shrunk to half it's size AND that there was no disease in any lymph nodes. This means if the chemo didn't completely kill the tumor then did it completely kill any possible rogue cells that are elsewhere in my body.

I came in with my guns (or I guess I should say my folder) fully loaded with research. I know that Dr Parker went to a symposium in December and that she highly regards information presented at that so that is where I did my research from. I brought in some documents I printed and highlighted from some of those presentations...and I happen to have chosen one from a doctor that she knows and respects!  This led to her offering to looking into the costs involved with further testing of my tumor to see what category it falls into. Of course insurance does not cover it since it is cutting edge research and not yet "approved by the FDA". It will tell me if my tumor is more or less receptive to the platinum drugs. If it is the type that is receptive then I may decided to move forward with a drug called carboplatin. UCSD is going to open a trial on this, for women just like me, that are just out of surgery and done with the "standard of care" treatment plan. I would not go into this study since I could get randomized out of it, she would just simply give it to me. She is also looking into the guidelines of the trial to see if it is given after radiation.  

In a nut shell there are still A LOT of variables out there before decisions can be made. This is exhausting!!!  It is so hard that nothing is cut and dry and that decisions aren't clear. I know that I also exhaust my doctor. I am sure that I am the only one that comes in and does this to her. I told her that I only get one shot at this and I want it to be the best shot I can give. I don't want "standard of care" I want cutting edge, push the envelope care. Of course she explained that with all chemo drugs comes a high level of toxicity and that complete consideration needs to be taken before adding another one. It also means I will have been in chemo for close to a year when all is said and done.

Of course I DON'T WANT more chemo but in the same breath I want to do what is best for the long run. I do not like the odds that only 60% of women with this go 10 years without a reoccurrence. So far odds have not played out well for me and I am not a gambler. She is supposed to call me when she gathers her info and we will make a decision at that point. 

I am scared and really could use your prayers for clarity for both me and my doctor. 

Healing

So and update on my healing from surgery...it is all going very well and I am happy with how I am doing. I can start driving a little now so that is a relief.  I still can't work for 4 more weeks though and need to come back slowly. Of course getting more chemo can certainly interfere with this but if I do get it there is a good chance it will be after my 6 weeks of radiation that would mean I wouldn't be done with chemo until mid July! Argh...that is a long time from now. From what I understand, that drug is given every 3 weeks for 6 treatments but that info is from the nurse and not the doctor so I could be wrong. I hope I am wrong and that it is a shorter amount of time! That would only give me a few weeks before Kendall's wedding to heal.  Either way, I will be there celebrating her day and dancing the night away!

Blessings

It has been a blessing to be able to be at home healing and I have actually done better than I thought I would with not going into work. Of course I miss it, I miss the wonderful women I work with and seeing all my clients and catching up with them. In the same breath I have been trying to make the most of my time off. It has been wonderful to get visits from old friends and even having a few excursions out and about. Yesterday I had a visit from my dear friend Leila. She drove down so we could visit and go out to lunch...you know you are having a great time with a friend when you end up visiting for so long that the time flew by and we never even left the house! It was wonderful to see her and we are planning on being better about getting together. We also had a house guest that was also recovering from surgery and he was able to drive so I highjacked him a few times to get me out and about. We saw a move, went to lunch...it was good company!

My other blessing is to know how many of you are praying on my behalf and I truly appreciate it so much! I need them all. As I said before I would really appreciate your prayers for clarity for both me and Dr Parker with the decisions that lay ahead. They are big ones and ones that can impact my life expectancy.  Thank you for your prayers and words of encouragement.

Sorry if I Scared Some of You Off

Many of you have shared with me that people are afraid to contact me. When I first started this whole thing and was trying to get info out to everyone I had worded something in a way that I feel I need to explain. I had stated that "the phone and email were not my friend". What I meant was that I was completely overwhelmed with everything and that if everyone I was getting info out to tried to call, text or email me that I think I would have fallen a part.  Can you imagine, I was letting all of my clients, neighbors, family, friends, church and such know what was going on and it would have meant hundreds of calls and such. It freaked me out to even think of it. I don't want any of you to be afraid to reach out and say hi if you feel the desire. I still prefer email over calls or text messages. That way I can give my undivided attention to you. I have never been one that liked to chat on the phone and I forget about text messages and not always good at responding to them. I love hearing from you and hearing your words of encouragement and I really like just hearing about normal stuff. Please do not feel I am unapproachable!  I just don't like needing retell or update people...that is why I have my blog, so I don't need to say everything hundreds of times! ;o)  Okay, I hope that is set straight now and I apologize if I turned any of you off, it certainly was not meant to do that. I need you all! 

I will keep you all posted when I hear from the doctor. Prayers until then please! XOXO to you all!

Love these 2 cards from my great niece and nephew!