Tuesday, December 18, 2012

On the road again...

Last week was another one for the records, Hanukkah, catching up after a week away and then...Leo appointments...finally met an amazing pediatric physical therapist, Nancy Dilger, who will get him the proper help he needs. I know I shouldn't go there but I feel like if he had been working with this specialist 6 months ago he would be walking by now. At least now he is in the right hands. He will see her at her West LA clinic once a week in addition to twice a week in-home physical therapy through Westside Regional Center starting this Wednesday.  He also started speech therapy today and will have twice weekly sessions. It was his birthday yesterday and my poor baby was sick. He started a runny nose sunday at Abby's party and now it's hitting him full force. Abby woke up with a runny nose yesterday morning too...after having the best weekend ever, her friend's Princess party (wih Cinderella and Aurora) and then her very own over the top girls only fairy party Sunday! This week is the combination of sick kids, a cold that Mommy has now caught too, and finally, beginning chemotherapy. The insurance company approved the "pre-authorization" of the Xeloda Monday afternoon so I started it last night! There was a moment where I thought, "why not just start it in the morning?" but then I remembered how thankful I am that there is a medicine available to me that will save my life so why wait??? Time to get the party started.


Wednesday, December 12, 2012

Flaming out...

Dr. Moulder said I should start Xeloda right away as a stop gap treatment until I get the results from the repeat liver biopsy. She had me repeat the CT scan because she wanted to confirm that nothing has changed since the PET/CT I completed in October.  She made it sound urgent to start the pills. Now it is crickets and I can't get in touch with her. Every breast oncologist in the nation (practically) was at the San Antonio breast conference last week. And now it is almost two weeks since I had that meeting with her. I am getting frustrated. So far the best news I've heard is that my brain MRI was clear. I am still waiting to hear about the CT scan and the treatment plan. MD Anderson is completely high tech. Everything, all my medical reports, including physician's clinic notes are online and accessible to me. Nothing is off limits or filed away. I like that. I also see that my chest x-ray came back completely normal as well. My blood work shows however that my tumor markers are still creeping higher. And that is why I want to get started on this Xeloda immediately...what is taking so freaking long?!?!?


Monday, December 3, 2012

Houston...we have lift off!

I came to M.D. Anderson Wednesday night last week. We got in very late and my appointment was in the early afternoon. I still had to fill out paperwork and while trying to eat some breakfast felt incredibly ill.  I had to go back up to the hotel room and while trying to fill out the paperwork kept getting nauseous and finally threw up. I immediately felt better. I couldn't figure out if it was something I ate (never finished breakfast though) or nerves. David swears it was nerves. I was pretty nervous about the appointment but I've never thrown up from anxiety before...

I've been reading several books lately. I just finished "The Shack" by W.M Young and have started reading Pema Chodron's "The Places that Scare You: A Guide to Fearlessness in Difficult Times".  I've also started doing home based yoga with a wonderful Kundalini teacher, Andrea Brook, (yogagirl.com) and am starting to feel more grounded. These books, the yoga practice and the Shaman sessions seem to have commingled themes...they all are pointing to me in the direction that I need to listen to my body. I need to meditate and concentrate on my breath. On the present moment. On my feelings, emotions and bodily messages. I think I am starting to break through and be better about this so it seemed a cosmic wake up call that I couldn't even recognize how anxious I was and understand that it could be the cause of my "selling buicks" before the appointment...

Any who....I had a good appointment with Dr. Stacy Moulder, who, thanks to Dr. Pittman, I had googled and got to know her over youtube and various articles she has published.  She is quite accomplished and further affirmed my belief that M.D. Anderson is on the cutting edge of cancer research. I was excited to meet her and discuss treatment plans.

The Breast Center at M.D. is a finely-tuned, well-oiled behemoth of a machine. They are not fooling around and everything is efficient, timely, and organized without feeling too sterile, even though they treat in the clinical setting. Dr. Moulder was uber smart and she was very caring to boot. I didn't come prepared with a list of 20 questions (looking back maybe I should have) because I wanted to just get a general gut feeling of the institution and the doctors.  Sometimes (ha ha) I tend to over complicate things and I wanted to try to keep this appointment simple.

Dr. Moulder completed her physical exam and didn't notice anything out of the ordinary. Her plan is to take Xeloda (using the readjusting protocol by Memorial Sloan Kettering) for one week on, one week off and start right away. I have to repeat my CT scan and given the odd headache and vomiting she also wants me to get a brain MRI. She says she is being cautious since I've never had something like that before and I get it... It's always good to rule things out otherwise I'll think every little headache, etc. is possibly the cancer spreading to the brain. The brain, as she said, is called a "sanctuary" sight since it is not able to be targeted by chemotherapy agents.

She also wants me to repeat the liver biopsy so that I can get all the genetic profiling and full panel gene array information (which is what I figured) so that if we learn of any genes being over-expressed my treatment plan can be targeted as such; which also opens the possibility of various clinical trials.  The biopsy is part of three different clinical trials and it is paid for by the researchers. I signed up since I will get all the information for my medical records once the results are complete AND I am entered into their database for new clinical trials that arise in the future. At the end of the appointment that was it. I gave some blood and had a chest x-ray completed and then it was done. David and I went to dinner and then took the first available flight home in the AM to spend the weekend at home.

We flew back to Houston early this morning so that I can have my CT scan, Brain MRI and, pending results from the scans, complete a repeat liver biopsy later this week.

I need to mention that I took a valium before I left the hotel room so I would be nice and relaxed during the scans. And I am nice and relaxed. I'm drinking my Barium drink (banana flavor - seems the easiest for me to tolerate) and the IV was actually uneventful (Thank the Lord).  Now I'm just waiting to go in.  I'm not thinking totally clearly since I'm so chill...

The past few weeks have not been so relaxing, it's mostly been a race to get Leo into the right hands for  helping him to walk. He is not a client of Westside Regional Center. He completed a vision screening there which led us to take him to see a pediatric opthamologist, and he was diagnosed with Amblyopia and started wearing glasses. I try to avoid stress but this whole process has been extremely stressful for me. I kind of manage my care second to his, and in my opinion that is they way it needs to be right now. The glasses are an ongoing battle; for the most part he keeps them on and doesn't seem to bothered with him that is until he is eating, or gets tired or decides he wants to take them off for no apparent reason at all...but he's been a trooper. And he looks adorable! Kids are so resilient, they get used to things very quickly. He has also been evaluated by an occupational therapist, had his follow up with the pediatric orthopedic surgeon, and met with the WRC's pediatric neurologist. At that being said, he has been making strides in his speech and seems to be getting stronger every day. He still is only cruising, standing for short times solo and only taking a few steps but the physical therapist and the orthopedic surgeon both recommend orthotics. I am still unsure but I think the may have Leo wear something called AFOS which are ankle braces that fit in shoes and provide full ankle support. Precious little guy, all this is happening when he is also hitting the terrible twos - when he wants to be in control of everything yet really is in control of nothing (aka temper tantrums are starting)...  Oh but spending all this time one on one with him is fun and he is really becoming such a momma's boy. I love it. The kids really are starting to play together nicer and it seems to be getting easier (at times).

I want to acknowledge that two other people, my grandma Myrna and my friend Burton are also getting scans today. I am praying for GOOD news all around!!!