Where does the time go? I keep telling myself to get the blog update done and then I realize another day has passed me by. I am so sorry to keep you all in limbo.
So let's get the health stuff out of the way. We visited with the radiation oncologist on Tuesday and learned that I may or may not have a couple options. The first thing we have to learn is exactly where this bleeding tumor is. (And yes, unfortunately is is still bleeding on occasion) They are still not sure if the bleeding is happening at the same place as it was in 2007 or if it is from a new spot further down the bronchial tube. I thought it was kind of odd that they did not know but I guess when they are working through the bronchoscope they don't know exactly where they are unless they simultaneously use some type of imaging to see where the scope is. Makes sense when they explain it. So the first thing I need is a new CT scan which I will get next Tuesday. Once they have the scan and know where the tumor is then we formulate a plan. Here is how the plan will go - if it is a new tumor in a new spot I probably can get conventional external beam radiation (the same process I have had 5 times already). But if it is the same tumor as before I will not be able to get external radiation as I have been given the maximum lifetime dose to that area. So what do they do? Go high tech of course! They can do an internal form of radiation called High Dose Rate Brachytherapy or Endobronchial Brachytherapy. What they do is another bronchoscopy then they feed a catheter through the bronchoscope to the exact spot of the tumor (which we will know after the CT) then attach a high dose rate machine to the catheter so they can apply radiation directly to the tumor without damage to the surrounding tissue like you get with external beam radiation. They advance this catheter 5mm at a time until they have covered the entire tumor. I am told this would probably be repeated twice more for a total of 3 treatments. I can do it as an inpatient and they would do them 6 hours apart so I would be in the hospital just 1 night and the entire course of treatment would be done. I can also do it as an outpatient but then it would be done over a few days and the scope would have to be removed and reinserted each time. If it comes to doing this I will have to ask a few more questions before making my decision. Not a lot of institutions do this and very few specialists are qualified to do it. Kind of scary to think about.
The doctor also reminded me of another option that they have talked about a few times which is systemic radiation. In this process they inject a radioactive isotope such as Strontium 89 directly into your veins. The isotope seeks out tumors and attacks them. This form of radiation is especially effective for bone tumors. Because I have so many bone tumors in my vertebrae and pelvis this may be a smart choice to consider. However I really need this bleeding to stop before resuming Nexavar so I'm thinking I need to attack the bronchial tumor directly.
Since it seems all docs take the week of Easter off so I will not be meeting with anyone until the 12th of April. That gives me a little time to think about it. I also am considering getting a 2nd opinion since they have been down my throat so many times already. I have 100% confidence in the team of specialists I have at Froedtert but sometimes it doesn't hurt to get input from someone else. There are lots of new procedures and new wonder drugs being developed all the time. I like to think I stay on top of new developments in the world of Thyroid Cancer but I would be kidding myself if I thought I knew about every possible option. On the other hand a part of me says "oh no - not again". Finding more specialists you can trust, more travel (I don't think I will find anyone in Milwaukee), more filling out health history forms and educating doctors on my unique history. It's a lot of work; very tiring and frustrating and I honestly don't know if I am up for it. You might think it is stupid of me to think that way when we are talking about trying to find a new way to extend my life but it's the honest truth. My life revolves around doctors, nurses, hospitals, and clinic visits and adding more onto that already large pile of manure is not a pleasant thought. Sometimes I just want to say "Enough!", lay down and ignore the world for a while.
Well I certainly have blathered on long enough about this adventure. Unfortunately it will probably not be resolved for at least another 10 days. Who knows? Maybe by then the bleeding will have 100% stopped. Let's all say a little prayer for that to happen and maybe, just maybe, we will have a small miracle work our way.
I have more to tell you regarding my visits with the palliative care team but the hour is late and I need my beauty rest. I will be back to you - I promise! If it is not before Easter I want to wish all of you a happy, healthy, blessed Easter. If it is not a habit for you go to church - you may learn something!
Be Well - Be Blessed!