I had the liver biopsy and PleurX drain put in my left lung on 12/31/2013. I was going to only stay one night for observation and to try to address the pain that I was having. Further tests revealed more information. The pain that we thought was coming from my lung and spine wasn’t just coming from my lung and spine. In fact I have some tumors in my bones in the left hemisacrum and right femur too. The spine tumors are now in more vertebrae than we’d thought.
I’ve actually been in the hospital for 6 days now trying to get the pain under control and formulating a treatment plan with my team. I will need to be here for a while longer. I am starting 10 sessions of radiation later tonight after being mapped this morning. We had hoped to do it in five sessions but for reasons I can’t go into now they have decided this is a better route and will be more effective for the future.
This treatment will stop the current progression of pain, but the way this radiation works for me is that it won’t provide true pain resolution for probably about 2 weeks and then improve further over the next few months. The pain reduction will be cumulative and take a while (long after the radiation is actually over) to see final resolution in my case. I’ll have to deal with this for a while yet.
The side effects because of where they are targeting the beams in my spine will be irritated esophagus, trouble swallowing, nausea, vomiting, and heartburn. The other radiation site in my hips will potentially cause decreased blood counts, pain, irritation, gastrointestinal pain and dysfunction and the like.
My pain is still not under control and I’m on a Fentanyl pump system that allows me to dispense medication as needed in accordance with the pain levels. I will convert over to oral medication and patches when it’s time for me to go home once we can figure out my needs. The pain and palliative care team here is unbelievably caring and devoted. So are the physicians and nurses. I have created an expanded family here already and can’t say enough nice things about the quality of care and total commitment to the patient.
I think for now that’s enough news.
Please, please respect my declaration that I do not want uninvited visitors, any gifts, or any flowers sent during this time. I know the intent might be good, but I appreciate so much those who have opted to instead donate to my Sloan Kettering metastatic research fund instead of purchasing anything for me. I haven’t been able to send thank you emails for those recent donations but trust me, they are appreciated. Good thoughts are also always just fine and have the right price tag!
This is a time when I am dealing with severe pain, a medical diagnosis that is unfolding and serious, and needing rest as much as possible. I do read emails but I am not responding to most at this time.
I was not able to start the clinical trial because of these newest announcements. We will see if I am eligible for it again in the future but for now we have to get the disease and pain under control. I did go on chemo for a few days but it now needs to be stopped during radiation. I will resume chemo after radiation is over and about a week of recovery time has elapsed.
Things change hour by hour, day by day. I’m adjusting the best I can. I hope this will at least let you know where we are, a long way from where I thought I’d be in the first days of this new year. Welcome to the world of metastatic breast cancer.