Monday, August 19, 2013

Chemo and Other Stuff

I know I need to update this. This has been a frustrating week, following chemo, and, more horribly, following whole brain radiation. I am not myself. I am slow and weak and tired and cannot ambulate like normal. Everything is working, just spinning at the same time. I hold the walls while walking down the hallway, and am thankful for my small house without stairs. 

It's been nearly a week since I ended WBR and began chemo. I have read that it may take weeks for the effects of WBR to wear off, and I am tired of this. It seems slightly worse each day, but maybe not. Maybe it's just the same and I can't tell. 

I did want to give an update on what regimen of chemo I am now on.

I will be infused with Carboplatin (fairly "well tolerated") each 3 weeks. In addition to that, I am taking two oral medications, Xeloda (2 weeks on, 1 week off) and something fairly new called Afinitor. Xeloda is also a fairly newish chemo drug that has shown good results for many metastatic breast cancer patients. I am praying it will give me lots of extra time. The Afinitor is different. It does something with blocking certain cancer inducing proteins (or maybe just one protein - I really do not totally comprehend). I think, anyway. Brain not to be trusted right now.

Dr. Beck and his team sent a section of the original tumor tissue off to some amazing and "savante" genetic expert at Oregon Health and Science University and received info that there are, indeed, some bad genes in my makeup. They actually have it broken down and can tell you the specific name of these genes. This a something new since my last round. 

So, they are doing all they can to be at the forefront of cancer testing and fighting, including using the newest genetic technologies and information. There are some clinical trials that coincide with that and it's possible I may be able to participate in one of those. I am still not understanding all of it, though. Dr. Beck was to have conferred with this genetic science expert guy last week. 

As far as side effects, I am still feeling those and will for a while. As mentioned earlier, most of the worst is from the radiation treatment. But the other meds are also affecting me. I have a somewhat sore mouth, which is tolerable. One of the best parts of the day is when I get a good, cold, ice-creamy like smoothie. Yummy and feels so good in my mouth and in my tummy. I guzzle seltzer water at times. I'm not sure why, but it feels great in my mouth. 

I am inordinately thirsty. I have little to no moisture in my mouth, and now I'm noticing my eyes feeling very dry. I think this is a side effect of the Xeloda. 

Also, as many of you already know, my hair is gone. David gently shaved it off over a week ago, as it was coming out in handfuls, and it continues to fall out, though I think is mostly done. This is all due to radiation, not chemo this time. And with WBR, it's sporadic and patchy. I actually have a mohawk and I think it's here to stay. It has to do with where the radiation is given. The mohawk thing is very common, I think. So much for that.

I am down to 1/2 dexamethasone pill each day for about 3 more days. They are tapering me off, and I will be so glad to be done with it. As long as I don't have headaches (or, God forbid, seizures). It interfered with my sleep something awful, so I am now sleeping some better. Of course, some of this has to do with heavy duty cough meds I have. My cough gets bad at night, so this has become a necessity.

And, as an aside, and a wonderful blessing I have had for the past few day -- I have spent hours outside. The weather here has been about as perfect as weather can be, and I have gone out back to my little backyard oasis and literally sat for hours at a time, beginning at about 5 each morning. I just sit, wrapped in a blanket, and feel the cool air on my face and look at the trees, and my flowers, and my garden, and the pool, and watch the sun slowly rise. My neighbor has a huge tree that blocks the sun for a good bit, so I can just sit for hours. I find myself sitting there asleep at times, almost catatonic...I find I cannot nor do I want to move. The feel of the air on my face is near perfect. I am convinced that Heaven will feel a bit like that...with trees and green and that early morning smell. Happy moments. David fixed me up in one of our lounge chairs as the morning wore on this weekend (after the dew dried), and I lay there in the shade, under our big umbrella and watched as he did my old jobs - gardening, watering, pruning. I felt so luxurious and spoiled.


  1. Savante - wow - you still rock the big words - and I'm sure you can rock a Mohawk. Thanks for being so open.It hurts to know you can't do the things you enjoy doing right now. Still believing for total healing. Sounds like now is the time to "be still and know that I am God." Enjoy all the sweet sensations, sounds, and colors that come from His creation. thankful you have the men in your life to pamper you right now.

  2. "Be still and know that I am God" right! You deserve to lounge and watch as David and your boys take care of jobs you did before, just resting, looking, and listening to them. I know they're happy to do them for you, and it probably brings you some joy knowing you have "guys" around to help.

    I'm hoping to catch Tawana coming your way and send something with her, or hitch a ride while my car is getting a new AC/compressor tomorrow. Hugs and prayers for you, dear Patti.

  3. You are amazing and an inspiration for many. Stay strong in this fight. Your cheering section is loud and clear with you! You are an artist in the classroom and also with words. Stay strong my friend. Love you so much. -betsy <3