Thursday, May 7, 2009 9:52 PM, CDT

Hello,

Where to start…where to start?????

It’s been a long time since I’ve written. And so much has happened….so much. Some of my posts are easier to write than others. This one is a hard one.

My scans in March showed that I was stable and I was continuing on with my treatment.

Over the past month I’ve been off and on antibiotics and went off on 4/28 and got pretty sick and completely out of breath. Greg sent Dr. Walsh an email and asked him to put me back on the antibiotics and Dr. Walsh thought it would be a good idea if I spent a few days in the hospital getting some tests.

Now when I tell you that Dr. Walsh thinks I’m a total junkie for the antibiotics I’m not kidding. I’ve actually been off and on them since October and no one can see any medical reason for me being on the antibiotics (and just for future reference the antibiotic I’m on is Levaquin). However, I FEEL better when I’m on them. Within a few days of going off, I get lethargic and achy and I get ear aches and I run a low-grade fever and I get very short of breath.

So I get admitted into the hospital on Monday with the expectation of getting some Levaquin (yes, Yes, YES….I could officially say, “Hi. I’m Kim. I’m addicted to Levaquin!”) and instead I had another CT scan and spoke with several specialists.

Ok but the junkie DID get her fix of Levaquin and I feel much better. J

However, the CT scan showed that the disease is progressing, which means the chemo is not working.

Unfortunately, that was the second and only real colon cancer regimen there is.

There isn’t much more Dr. Walsh or conventional medicine can do for me.

This was quite a blow. And I’m taking a few days to sort out the information and make a new plan.

I may not qualify for a lot of Colon Cancer trials out there because no one knows for sure that I have colon cancer. What I have is a cancer of unknown primary in my lungs that tests like a colon cancer and responded to a colon cancer treatment.

What are my options right now?

v Dr. Walsh will do whatever I want. If I want to continue on the treatment that I’m on just to be sure it isn’t working I can do that.

v He suggested one other chemo that works against lung cancer but has relatively no side effects: Pemetrexed (or Almita as it’s marketed by Eli Lily).

v I can try to find a doctor at another hospital to review my case

v Alternative treatments

v Hospice

As sure as I am that I would like nothing other than to be cured, I am also sure that IF I CAN NOT all I want for the rest of the time I have is to spend it with my family and friends: as a mother, a wife, a sister and a daughter. I don’t want to spend it chasing chemo treatments and feeling sick.

We spoke with a palliative care doctor yesterday. What’s a Palliative care doctor you ask? As far as I can tell, aside from what its name suggests—mitigating pain and suffering--, it’s a stepping stone to Hospice.

And after talking to this doctor, I guess Hospice isn’t so bad either. It’s not just to take care of you as you die but to help you live life to the fullest while you’re here.

And Greg did point out that Art Buchwald was on Hospice for something like two years!!!! J And then this doctor said she has had people off and on hospice and then some people have “graduated” from Hospice—meaning they find a stable, healthy place and they’re not really preparing to die.

She gave me some HOPE. And she mentioned alternative treatments and talked about the mind/body connection and the strength of the human spirit.

Ok, some of you might be thinking….wow, she is a junkie and maybe the Levaquin HAS gone to her head.

But I tell you, I am TOTALLY open to any and all alternative treatments….I don’t care if it’s eastern medicine, herbs, yoga, some crazy witch doctor in the Bayou. I mean it. I will try almost anything. So send your suggestions. And by the way, my AOL email address isn’t the best one to use even if it is listed here on caringbridge. You can use: Abusheery@verizon.net

I’m also looking for miracles, so if anyone knows where I can find one of THOSE, just let me know!! J

Dr. Walsh mentioned alternative treatments but places no belief in them but doesn’t think they’ll hurt either.

So right now I’m feeling better after having the antibiotics and I think I’ve convinced Dr. Walsh to keep me on them indefinitely. They sent me home with a nebulizer and some oxygen and lots of other sorted meds mostly to help me breathe better. I have a PET scan on May 13th and have a few follow up visits with Dr. Walsh.

I have some decisions to make and all sorts of information to pour through.

I am officially still fighting. There is not ONE part of me that has given up or thrown in the towel. Please don’t think that for one minute!!!

I am so incredibly blessed to have the family that I have the friends that I have. I cannot even begin to tell you all the wonderfully amazing things they have done for me over the past few days: They watched my kids, they cooked for us, they made difficult phone calls, they brought me coffee, they baked us brownies, they baked us muffins, they brought me a rose, they brought me ice cream, they cleaned my house (yikes), they did my laundry, they sent me emails, they called me, they prayed for me, they visited me, they made me laugh, they held my hand, they hugged me, they held me, they gave me hope, they loved me.

Thank you. I would not have made it this far without you and certainly cannot take these next several steps into the total unknown without you.

You all have provided me a very soft place to fall in this incredibly difficult dark time—in the process, waaaayyy too many of you saw me without my wig….but, I’m trying not think about that!!! J

I love you all so so so so so much. Thank you for being in my life.

Love,
Kim