They like me! They really like me!

MD Anderson called and told me to come see Dr. Curley next Wednesday morning! HORRAY!!!!

I just booked a flight and a car, Honey’s on the phone with MD Anderson now, making lodging arrangements! We’ll be there for a week (returning Wednesday 12/12) and if the doc wants to do any further surgery or whatnot, we’ll go back. My inlaws might be coming with us…they haven’t decided yet.

So, next Tuesday was already busy but now it’s EXTREMELY busy. Morning, see Dr. Kortz (surgeon). Afternoon, see Dr. Cane (oncologist at Univeristy of Colorado). Nighttime, fly to Houston. Arrive in Houston close to midnight. See Dr. Curley Wednesday morning at 11am! HOLY COW! I guess with Honey behind me, pushing me or dragging me as needed, I’ll be able to do it.

I am so excited! I feel like I just won the lottery!

WHAT A DAY I HAVE HAD!

Met with a Radiation Therapist early this morning (Schreiber) and he was great (although he had beady, steely eyes that kind of freaked me out!). He told me all about his radiation techniques and how they would work on me. The goal in his treatment of my tumor would be to relieve my pain and discomfort temporarily. He assured me his radiation could not CURE my tumor and it’s unlikely that if he were able to shrink it and then left it alone that it would not return again later. Makes sense to me. The risks are minimal and would most likely NOT damage the healthy part of my liver. He stressed, though, that we really need to find out from the surgeon first and foremost if he thinks he can go in and remove any of this tumor, now or even later if we were able to shrink it with chemo and radiation. That’s next Tuesday morning and the surgeon is great, straightforward and honest so I trust whatever his assessment will be.

Schreiber told me a bit more about the radiation seeds that he can implant in the tumor but that would have to be done surgically and only if resection (surgery by Kortz) was not an option at all. Basically, that would only be done to try to control, though not completely erraticate the tumor, because of where it’s located. He talked with us at length about how we are seeking second and even third opinions from other oncologists. He said the University of Colorado’s Anschutz Cancer Center is really the best way to go in state and if we chose to go to MD Anderson (see below) and they suggested a radiation treatment that he has access to, he’d be willing to administer their plan to me locally (ie. I wouldn’t have to LIVE in Houston for that).

I felt confident in his ability to treat me. Though I am not starting anything until I get all the opinions I am seeking. He will call me back in a week to see if I have more questions or need more help deciding.

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I decided to try MD Anderson. In addition to whatever the University of Colorado can do for me, I decided this type of tumor is so rare (only 19,000 in USA last year), it would be in my best interest to get care from THE cutting edge in the field. I know a lady who knows a lady who is a mucky muck at MDAnderson so we’ve been swapping phone calls all day. Instead of taking the usual route of faxing all my reports to their general GI department and wait 7-10 business days for them to review and call me back, I have a direct line to their leading LIVER TUMOR EXPERT! I have just faxed all my reports (37 pages!) to his assistant who will get them to the doctor to review and they will call me back later this week or early next week (one week at MOST) to let me know if they think I am a candidate for their services. HORRAY! I bet I am. I will be very VERY disappointed if they reject me though. I can’t even think about that possibility right now. Ugh.

My godmother and her hubby live in Houston, very close to MD Anderson. If I can be seen there, we’ll go stay with her for a few days for testing and whatnot. We have a credit with an airline from the Las Vegas trip we had to bail on earlier this month so that will help pay for last minute airfare (cringe!).

I spent most of the day driving from doctors’ offices and hospitals collecting copies of my ultrasounds and CT scans on CD. Now that I’m branching outward from my normal stream of referred doctors, I need to have everything IN MY POSSESSION to hand over, fax, or otherwise deliver to these doctors I intend to see. I think I need a bigger folder!

Also, I called my insurance company to see how much of my trip to MD Anderson or even just the Univeristy Med Center they would cover and WOW! Our medical coverage is GREAT! So no more worries there.

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Some of you have emailed me about alternative/complementary treatments. Thank you for those ideas! I am seeing an acupuncturist/herbalist who has been working in BioPhysics and BioPhotons for years and has even been written up in reputable scholarly journals. My shrink led me to her and I’m excited to work with her. Basically, she’ll assist me in clearing out and aligning my energy centers. This is by no means going to serve as a replacement for conventional therapy, rather as a complimentary treatment. It can’t hurt, huh?

I am also interested in seeking a nutritionist. Before I go cutting out refined sugars, caffiene, foods that are purple or other sorts of crazy dietary changes, I need some guidance. Once I get a treatment plan lined up, I’ll secure a nutritionist and work on that, too.

Today I begin walking mom’s dog EVERY DAY. I woke up to freezing temperatures and snow on the ground but, as it always does in Colorado, the sun has been shining all day and most of the snow has melted already. So I’d better find the leash and get out there! (FYI: I’m not walking the dog in order to lose weight. In fact, since my diagnosis, my doctors are all telling me NOT to lose any weight right now. My appetite is already wonky and I’ve already lost a couple of pounds by accident. Now is not the time for diet! I am walking the dog to get exercise into my life because the books I’m reading both stress the importance of it, even in simple doses like a walk around the block.)

Keep those prayers coming for MD Anderson to accept me!!!!!!! *HUGS*

I have lost faith in Alvarez’s ability to treat me successively.

It is his opinion that the tumor started in the gallbladder or, possibly, the pancreas. He says all those bits are crammed together so close to the liver that it spread easily to the liver. And it’s too intertwined with the veins in the liver to be cut out successfully. Maybe we could remove the pancreas and gallbladder…later…if we can shrink the tumor on the liver first. BIG IF.

His treatment plan is chemo. A specific chemo drug in particular. Though, he admitted he has never used that chemo drug on my type of tumor so he’s not sure how successful it would be.

He says radiation is too risky to jump right into. And if we chose to go with radiation seeds planted directly in the tumor, then that would negate the surgery option further down the road. But we need to talk to the radiation therapist about that tomorrow.

He says it would be better if we could determine exactly where the cancer started so we could be more specific in the treatment. In order to do that, though, it would require exploratory surgery, which is extremely risky. Also, ideally, he’d want to cut the tumor out but again, where it’s located makes it too risky to do that completely. We’ll talk to the surgeon next Tuesday about that option.

When I asked him if there is anything I can be doing on a daily basis (ie. foods to eat or avoid, multivitamins, etc) to help stunt the growth of this tumor or at the very least keep me healthy otherwise, he quickly shook his head and said, “No. Nothing you can do.” Somehow, I don’t believe that.

Basically, I suddenly no longer feel confident in Alvarez’s ability to treat me. That’s a huge blow, considering I’ve been working with him for over two months now and I had confident in him the whole time…until now. It sort of feels like the bottom has just dropped out of the boat on me. But then Honey tells me not to think that way.

Next Tuesday, we’ll see Dr. Cane, a research oncologist at the University. Alvarez made it sound like she’s really the way to go, indicating that she may have some “investigative” treatments specific to my kind of tumor. He said he’d support me in any decision I made but I really feel like I would be settling for less than I deserve if I went with Alvarez’s “inexperience.” This is not the time to be settling for anything. I’m fighting for my life here. I intend to keep seeing these other docs for other ideas and suggestions but now I am opening myself to the idea that I may very well need another opinion in the mix (just in case Cane doesn’t have anything promising for me). We’re going to ask Kortz (surgeon and liver transplant specialist) for a referral to an oncologist who may be better versed in this area.

This all takes time, which is the most annoying part - especially with Alvarez stressing, “Time is of the essence here. You need to research and weigh your options carefully but make a decision quickly.” It’s difficult but we’re doing it.

I got a couple books last night on cancer. Basically, I was looking for something I could read in bed, that would “hold my hand” (so to speak) without being overly sappy, sentimental and passive. I wanted something informative and educational - something that could offer me suggestions as to what I can do to help myself, outside of the doctors’ offices. I came home with these two books:

Fighting Cancer from Within: How to Use the Power of Your Mind for Healing

Cancer: 50 Essential Things to Do

I started the Fighting Cancer from Within book last night and so far it’s very empowering. It’s already convinced me of my own strength to make the right treatment decisions for myself, the courage to ask doctors difficult questions, and the confidence in my own participation in healing my body. I really want to get the CD’s of the author’s guidance through imagery techniques but it’s kind of expensive and I just can’t justify that cost right now.

So tomorrow is meeting with radiation therapist to see what he thinks of my cancer. Tonight, I intend to regroup my thoughts and emotions after the big let down with Alvarez today.

I have decided to get the IV catheter port “installed” ASAP and letting Alvarez’s office set me up with that (he assured me that once I have it in, anyone I end up seeking treatment from can use it). So waiting to hear back from them on it.

Just in case you’re wondering, here’s my upcoming appointment schedule:

Tuesday 11/27 AM - Consult with Dr. Alvarez (oncologist #1)

Wednesday 11/28 AM - Consult with Dr. Schreiber (radiation therapist)

Tuesday 12/4 AM - Consult with Dr. Kortz (surgeon)
PM - Consult with Dr. Cane (research oncolosist #2)

Updates will follow shortly after the appointments.

Honey’s Uncle is a nurse so I scanned and sent him the final pathology report of the biopsy. He translated it for us and it just helped us understand it better. Basically, the report says that there are cancerous cells on the liver and there are also healthy, functioning cells in the liver. The pathologist concludes that the cancer is likely to be primary to the gallbladder/liver area and not another part of the body. That’s good news.

I’ve been thinking a lot about treatments. Still. Of course. I talked with one of my best friends yesterday about how he found out he was HIV+ over the Thanksgiving weekend several years ago. He understood my frustrations of having to wait to get more opinions; wait for treatments to start; wait for the fight of my life to begin. He also understood the suddenly fatalistic thoughts I’ve been struggling with this past week. Last night I had an epiphany: I am not going to die from this. I am going to fight it and I am going to win. I will be healthy one day and I will be labeled as a Survivor. This was just a conclusion I made in my mind; I am still working on the emotional and physical strength this insinuates!

My pain is much better now. I haven’t taken any pain medication (prescription or otherwise) for two days now. I’m trying to clean the main level of our house today but I’m quickly running out of energy. It may be time to stop for now.

Tomorrow is Monday. Honey goes back to work and a dear friend is coming over to visit. The phone calls to doctors will resume and appointments will be made.