Thank you for your support on this, your thoughts and prayers and suggestions and general notes of support. I read and re-read them (even if I don't always answer) and they are so energizing to me.
If you want further information on the surgery, here is a link to a recent NYTimes article:
Tiron is INCREDIBLY organized with my medical files, so we were able to connect with doctors relatively quickly. We talked with Dr. Paul Sugarbaker in D.C. (the granddaddy of this surgery in the US) and Dr. Laura Lambert at UMass. Talking with Dr. Lambert, I felt such relief that i could cry. Or maybe I just wanted to cry that I am in this situation having this conversation. Nevertheless, she is the walking persona of a great doctor for me: Confident without being cocky, optimistic without false promises, and caring with a solid base of experience. We considered talking with doctors in Pittsburgh, but I couldn't even imagine anyone better than Dr. Lambert for me.
In addition, we talked with people who have been through this surgery. I have to call one more person on my list, but overall, everyone who has been through this agrees that this is one big surgery though well worth it. You know how you go for your first bikini wax, and quite a few friends will say that it smarts, but there are also a few who will say, "It isn't so bad." Well, there is not one person who is saying, "It isn't so bad." THAT is scary.
It is also sobering to think that, for as energetic and strong and invincible as I feel right now, I know enough about surgery to realize that it totally knocks you on your butt.
The good news -- remember, this is all relative, but hey, I'll take it -- is that they have simplified things somewhat so my hospital stay won't be as long as they used to require in the past, and I don't need to go home with a feeding tube. Yay! I hate being in the hospital, and I love to eat. At first, I thought this meant I was getting "HIPEC light," which I didn't want. If I am going for this, I want to do the whole thing. But Tiron explained that in years past, heart surgery required a longer stay in the hospital than it does now, so I do believe that I am getting the full treatment here.
We continue to see what else is out there. There is a place in Germany where they analyze your blood and determine whether the chemo you are getting will do anything for the tumor you have. (I'm not sure I got that description completely right.) So we are looking at that. There is a place in California that does something similar if you have a tumor that has been extracted in the past, say, 24 hours. I have to say that the best thing I've found is in China. I'm not going for it, but I'm following the blog of Terri Taylor, the Pittsburgh journalist who is currently being treated there for rectal cancer. I'm very intrigued and hopeful. Ironically, she reported on this very treatment in the 90's. It is used in the US for other cancers, but not all cancers.
Yes, I have become one of those people chasing all over the world for what I can find. I used to think those folks were pathetically desperate. Of course, whenever I judge someone, I find myself in their shoes. And I don't actually feel desperate. I mostly feel like not everyone does everything well, and the world is small. So where once you might travel to, say, New York, to see a specialist, you might now travel to Germany or China. Of course, it is still more time-consuming and expensive. Details, I suppose.
Okay, we got the decision down and had a plan. We would get the kids settled in school, and then do the surgery. My rock star MGH surgeon was even available to be there, which comforts me as she knows all the parts of my abdomen as they are currently arranged. (All my insides are in new and different places than they were when I was, say, 40.) She has also become my security blanket. We aimed for the week of Sept 16.
KEY WORD: Plan. Ugh.
Psalm 33:10: He frustrates the plans of the peoples.
Or, as Woody Allen says, "If you want to make God laugh, tell him your plans."
Plans in place, we left for a two week vacation on Cape Cod. The week started off with intense abdominal pain for me. I could walk around but in definite pain and couldn't eat for three days. I suppose it helps my swimsuit body, though with a breast prothesis and colostomy bag, I don't worry so much about how I look in a swimsuit. Then, I started bleeding from parts where I should not be bleeding.
Off to Cape Cod Hospital for a CT scan to see if there was anything big and scary causing the bleeding. That in itself was borderline comical - so many old people that I hoped they were there for the AC. Add to that a CT tech who smoked a cigarette just before seeing me. I couldn't resist unloading on him. Of course, he got his revenge by scanning me THREE TIMES just to see if I had the correct port in my chest. That is before he even did the scan I came for.
Tiron got a copy of the scan so that we could check it out ourselves at (our rented vacation) home. I didn't envy him. We wanted to know, but it was still really scary. The good news is that there was nothing big and scary and new showing up, though the liver met we knew about grew a little (not unexpected) and there appears to be a new liver met who decided to join the party. The written report from the doctors later confirmed all this. Weirdly, I was relieved that that was all there was, and we went on with our vacation.
We had a GREAT vacation. Idyllic actually. But the bleeding got worse, so we headed home on a Friday morning.
That afternoon, I set up an ultrasound for the bleeding, a PET CT in preparation for the surgery, and got a surgical date of Sept 12, which I am trying to change because the kids will have JUST started school and I want them to be a little more settled. Plus the last time I was in the hospital on Sept 12, we had a baby who died so that week still carries alot of emotion for me. Life is so complex! I set up the anesthesia appointment and an appointment with the surgeon, and started the process of booking rooms nearby for any caretakers to stay. So the wheels are moving quickly. My head is spinning with everything I should be doing here to get everything set and everyone ready for the change to school and for my hospital stay and recovery. Kind of like hurricane winds on the inside to match the hurricane winds on the outside.
So I will leave you with this comic that someone found for me. Definitely expresses my state my mind at times during my chemo vacation.
Be well, and hug someone today!
Love and prayers,
Marie
