This month I have received some bad news about my health. The Melphalan and Prednisone is just not working enough to slow down the damage happening to my heart. I was in the hospital the day after my 52nd birthday, and there were some new discoveries about my heart.
I now have a new signs of poor survival rates -- my heart is producing troponin indicating damage to the heart. That is the chemical that they usually assume means someone has had a heart attack. In my case it is damage from the amyloid and shows progression of the disease in my heart. Also bad news is the ever rising BNP levels indicating heart stress.
The docs can also now see the amyloid in my heart with an echocardiogram. That is also new. It is weird but it makes the heart glow and look luminous and beautiful because the amyloid starts to make little crystals that reflect in the echocardiogram. The detail it shows is amazing. The tech and cardiologist say my heart is very photogenic. I was amazed at how beautiful it looked.
My oncologist switched my chemo to dexamethasone which makes me feel like I'm on speed. It is a nice change... no nausea so far... and I have more energy to do things. I spoke to my doctor tonight and we are going to be even more aggressive in my treatment. If my body can handle it, in two weeks I will go on Melphalan and Dexamethasone together. The response rate for this is 58%. If I respond to this chemo the stats say 37 months survival is the median for women. If I don't respond it could be anytime (I have already gone the 9 months median predicted). Sorry to be blunt but sudden cardiac death is the leading cause of death for patients in my situation so I am really coping with the possibility.
With this knowledge comes a great opportunity to grow, and to produce something great. I am not sure exactly what these gifts will be, but I know that they are coming. I have already connected deeply with some friends, and they are joining me on this journey. I am so grateful and so blessed.
Also this month, we had a terrible hail storm. Golf ball size hail just devastated my garden. Little is left and it is a great lesson in the impermanence of life. The good news is that I was able to plant the small raised bed with fall veggies already. Birth and death are so linked, and something that every living thing shares.
You can see pictures of the hail storm at: http://www.flickr.com/photos/kit_z/
For a specific photo of my poor garden see: http://www.flickr.com/photos/kit_z/2776715514/
3 comments:
Dear la otra vida 5,
Wonderful blog. Thank you so much for sharing your thoughts and stories.
You mentioned that you drank green tea and I was wondering how much/how often you drank it and whether you found it to have any effects.
Thank you again for sharing your difficult experiences with such touching honesty. I wish you the very best.
John
Thanks John. The green tea works best when I am able to drink about 2 liters a day. I can't say it is clinically proven, but its effects are noticeable. I have less fluid retention overall, improved energy levels, and what I believe is an increase in protein in my urine from my body expelling the amyloid protein. That's what I believe. It definitely helps me feel better and have less fluid retention. There are long periods when I haven't done it consistently enough but when I do I notice real benefits.
Thanks, la otra vida. I was just wondering because many people do seem to experience positive effects from it.
Great reading list, by the way. I will check some of those out.
John
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