Lolo Update!

Well, Michael and I spent Thursday and Friday in Jefferson City. We met with the doctor and his medical team Thursday and they ran various medical tests on me. Then I had scans run on me on Friday. I had four scans...an ECHO for the heart, a CT, a brain MRI and a bone scan. I took a sedative because the MRI is pretty traumatic. Even if you aren't claustrophobic, it is hard not to be when you have your head in a cage and a lot of metal sounds on the outside of the machine. It literally sounds like heavy artillery being shot at me in a random fashion. Horrid! They even give you head phones, but it doesn't matter. The only thing that helps is semi-sleeping through it so that is what I try to do.

I think we have jumped through most of the hoops to get on this trial. We had a series of questions for the doctor there, the main thing being that he would be comfortable with working with my oncologist here in KC. I want my medical team to expand, as it needs to...I don't want to have to exclude my old team. In fact, I just won't do it. The trial may be run be a site here in Overland Park, yet they are wanting me to transfer everything to them for a year and basically not keep contact with my oncologist. Not sure that I understand that.

I had our insurance company try to make me switch last year also. They said he wasn't on our plan. So, we have forked out a lot of our own personal money to keep this team because, quite frankly, they have proven themselves several times over to SAVE MY LIFE! I am not really putting that in all caps for you all, but for the doctors or the insurance companies who would try to make me switch for sub-par medical care. I am not sure they realize this, but my life is hanging in a delicate balance right now. I can not get my choices wrong. So, I won't.

My story is not about dying from this disease, but about living with it until I can find that magic bullet to blast it out of my body for good. That does not mean I don't have bad days. To be honest, this week hasn't been very good. I have had digestion issues because the benefit of my stint is wearing off. It is a small stint so we did not expect much from it, yet it is horrible to feel as though you are hungry, yet you are not sure what a food you are eating is going to do to your digestive system.

Anyway, because of this problem, my bilirubin count was high when we went in for the bloodwork on Thursday. However, this is not a non-starter. This does not mean I can't get in the trial. Besides this residual liver issue, I have never really had been symptomatic with my disease. I have endured side effects from medicines, but my actual cancer has not caused me many, if any symptoms. Funny, huh? I am a great candidate for this trial. My heart is good and I tolerate meds with minimal side effects. It is a targeted drug that goes after my type of cancer...so what are we going to do about the counts?

Well, this is what happens when you have a great medical team (and a great husband). While I was in scans Friday, the Jeff City doctor's office got a new appointment for my next bile duct stint, which was very kind of them. However, none of us were happy with the lateness in appointment (about 10 days out from now) because this would push my being on the trial out for a bit longer. We have to give the liver some time to work the excess bile through my body before we do blood counts again.

So Michael called my oncologist at KUMED to see if he could help because he knows my the surgeon. Michael left messages with everyone on our doctor's team and told them of the dilemma and they were able to work with the bile stint surgeon (real title, unknown to me so I hope that does not sound insulting - he is a guru to me) to get me in this MONDAY morning at 9am. Yes, I said Monday morning at 9am! There was a late cancellation so the pushed me right into the appointment. (On a side note, I am not sure how you could cancel with a doctor like this because there is usually a need for the procedure, but I will not question it too much.) Michael and I were so ecstatic because, mostly, this will minimize my days of discomfort. But, if things go like clockwork I could start the trial without a glitch in Jeff City, MO the following week. There would be no delay from our original plan.

We will call our team in Jeff City on Monday to let them know of this change in scheduling. They are very kind and courteous, hardworking. We can tell they want me in the trial because they want to help me. They were never possessive of me, even offered to let me come back to KU once they are able to get the. However, the drug company would not allow that. This is okay because Michael and I are not immune to weekly travel. The infusion time is short and I owe my life to Genentech. They created Herceptin, which has helped me and so many of my friends. You know there used to be so many stories and movies about young women getting breast cancer and dying young because there is nothing they could do for them...well, Genentech is one of the drug companies who has changed my story and the story of many of my lovely friends. They are running this trial and if they want me to stay in a specific spot, I am fine with it.

So that is my plan and that is what I will pray for and meditate on. Sometimes, these bends in the road (like with my bilirubin) are actually just bends in the road, not ends to them. Sounds cheesy, but it has been true with me. There is always an option...sometimes you just have to do the hardwork to get there. Thank God, I am a hard worker, huh? :) Because the Jeff City site is one of the first places to get this trial going, I could be the first woman in America to be on the trial. How cool is that? I can put that on some credentialing list for advocating for my own health. Now, keep in mind, I would much rather have good health than to have credentials in fighting so hard for it, but that will come in time. I am sure of it.

If I am a little quiet over the next couple of days, it is because I don't feel great and/or I am recovering from this surgery so don't read anything bad into it. There is nothing bad about it. We are chasing this cancer out of my body and that does not come without side effects. I will definitely write when I can and I will be as open and honest as possible. But, God has made my body resillient and I will be back in action as soon as possible.

Oh, and the Redbook is out...the one with me in it! Yikes! I will post the cover in another post...if I can figure out how? Diane Lane is on the cover, but I am in the middle! ME! So exciting and humbling. Thanks for reading the blog and ask as many questions as you would like.

Blessings,
Lolo