Brad and I traveled down to MDA on Monday to get an ultrasound and meet with a nurse practitioner (the doctor was out of town). The short story is that my primary tumor decreased, but I still have a boat-load of satellite tumors and lymph node involvement: axillary (armpit), infra (under the collar bone), supra (above the collar bone), and lower neck. Technically this is all still considered regional metastases and not distant metastases. Regional means your cancer is advanced but still potentially curable. Distant means you will never be able to get every single cancerous cell out of your body.
So while stable lymph nodes and a slight decrease in tumor size is definitely better than "your disease has significantly progressed" (like I heard last time), it wasn't the awesome news I was hoping for. I thought I felt more of a change in the tumor size than the ultrasound revealed.
Another piece of good news was from the radiologist. She heard I was concerned about cross lymph nodes and went back through all the scans I've had done at MDA and confirmed that I have not had malignant-looking lymph nodes on any of their scans. Her opinion was that the language on the CT scan from UT Southwestern was denoting that the lymph nodes were benign. So it appears I am still non-(distant)metastatic, for now. I will have another PET scan before my next MDA check-up in six weeks to see if my cancer has spread to my organs/bones and get a different measure of my primary tumor.
Each trip to MDA is sort of a beat down. The loads of appointments on the same day to minimize the time away from home, the delays and waiting time, the long ultrasound process to measure all my extensive disease, the emotional turmoil waiting for results and discussing your situation with nurses and doctors- the whole show leaves you utterly exhausted right before you hit the road for a four hour drive home. Even when you get (relatively) good news, the trip itself is still a reminder that I have a really terrible disease.
For some reason, this comparably very good news has made me more down than it probably should. I didn't receive any new information this trip, but for some reason this week I've had less hope than I normally do. I think it is because with every chemo treatment and with every drug switch, we are exhausting more and more of the few tools a triple negative breast cancer patient has to fight cancer. And every time my cancer proves unresponsive to a treatment, it becomes that much stronger, bigger, and harder to cure.
I asked my MDA researcher friend (who I just love- she is wicked smart and so incredibly knowledgable), if there was anything good about my type of cancer, any "bright side". She thought about it for a moment, and replied in the scientific way she has about her, "No." So there you have it folks- I have the worst type of breast cancer someone can have.
Right now I feel like I'm strapped to train tracks and there is a freight train headed my direction. I feel like there is nothing I can do to cut the rope and get away in time. Everyone is praying that the train will slow down or miraculously jump the tracks. And I'm told to enjoy my last few minutes before the train runs over me. And be encouraged by the fact that the train is slowing down slightly. You try not thinking about the train as it moves closer.
I've read the literature, I've talked to experts, I've done the research, and I've come to the conclusion- there is nothing in medicine and science that exists in 2015 that will heal me completely of cancer. If I am healed it will be an absolute miracle. God intervening and literally taking the train off the tracks is the only hope I have of living more than 6-12 months from now.
I want to be in my friend's wedding in June, I want to be at my other friend's wedding in Sept, I want to celebrate my 31st birthday. From where I'm sitting, I'm not sure those things will actually happen for me.
Lord, I need a miracle. Please come and save my life. Spare me Lord, give me more time with my husband and boys. Only you know the number of my days. I know you are the Great Physician. Let me live. Heal me Lord.
So while stable lymph nodes and a slight decrease in tumor size is definitely better than "your disease has significantly progressed" (like I heard last time), it wasn't the awesome news I was hoping for. I thought I felt more of a change in the tumor size than the ultrasound revealed.
Another piece of good news was from the radiologist. She heard I was concerned about cross lymph nodes and went back through all the scans I've had done at MDA and confirmed that I have not had malignant-looking lymph nodes on any of their scans. Her opinion was that the language on the CT scan from UT Southwestern was denoting that the lymph nodes were benign. So it appears I am still non-(distant)metastatic, for now. I will have another PET scan before my next MDA check-up in six weeks to see if my cancer has spread to my organs/bones and get a different measure of my primary tumor.
Each trip to MDA is sort of a beat down. The loads of appointments on the same day to minimize the time away from home, the delays and waiting time, the long ultrasound process to measure all my extensive disease, the emotional turmoil waiting for results and discussing your situation with nurses and doctors- the whole show leaves you utterly exhausted right before you hit the road for a four hour drive home. Even when you get (relatively) good news, the trip itself is still a reminder that I have a really terrible disease.
For some reason, this comparably very good news has made me more down than it probably should. I didn't receive any new information this trip, but for some reason this week I've had less hope than I normally do. I think it is because with every chemo treatment and with every drug switch, we are exhausting more and more of the few tools a triple negative breast cancer patient has to fight cancer. And every time my cancer proves unresponsive to a treatment, it becomes that much stronger, bigger, and harder to cure.
I asked my MDA researcher friend (who I just love- she is wicked smart and so incredibly knowledgable), if there was anything good about my type of cancer, any "bright side". She thought about it for a moment, and replied in the scientific way she has about her, "No." So there you have it folks- I have the worst type of breast cancer someone can have.
Right now I feel like I'm strapped to train tracks and there is a freight train headed my direction. I feel like there is nothing I can do to cut the rope and get away in time. Everyone is praying that the train will slow down or miraculously jump the tracks. And I'm told to enjoy my last few minutes before the train runs over me. And be encouraged by the fact that the train is slowing down slightly. You try not thinking about the train as it moves closer.
I've read the literature, I've talked to experts, I've done the research, and I've come to the conclusion- there is nothing in medicine and science that exists in 2015 that will heal me completely of cancer. If I am healed it will be an absolute miracle. God intervening and literally taking the train off the tracks is the only hope I have of living more than 6-12 months from now.
I want to be in my friend's wedding in June, I want to be at my other friend's wedding in Sept, I want to celebrate my 31st birthday. From where I'm sitting, I'm not sure those things will actually happen for me.
"Though I walk in the midst of trouble,
you preserve my life;
you stretch out your hand against the wrath of my enemies,
and your right hand delivers me.
The Lord will fulfill his purpose for me;
your steadfast love, O Lord, endures forever.
Do not forsake the work of your hands."
-Ps 138:7-8
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