buh bye tami tumor!

Posted from Jan's Sunday Punch Blog.

Oncologist W: You know what, we just need to stop f*cking around with this. Let's just get it out.

Me: blink blink. (turning red) I can't stop blinking (you know that thing I do when I start blinking too hard). I keep trying to blink myself out of this. It's not working. I give Julie a blank, get me out of here look. Julie does this laughing, oh shit thing with her face when she's surprised. I think she wants out, too. (silent scream while I hover over the whole shitshow) But what about the other radiation treatment?

Oncologist W: Let's just quit f*cking with it. I'll get Boudreaux. (Yes, the surgeon's name is really Dr. Boudreaux and he's really good so don't even think about any Boudreaux jokes.)

I did another CT 3D scan in Kenner and a day later we were talking with the surgeon.

Surgeon B: (After betting Julie the surgeon would say no again. Or maybe she bet me.) Mhmmm. Mmhhmmm. Yeah (sigh and serious look as he shows us the scan). Well, do you have anything big planned for the next couple of months? We can plan around any vacations or trips....? We just need to get it out. We'll do a central hep..bwa wa bwaaa" ...sounds I can no longer hear...

Me: Me shaking my head, but I can't make a sound. (blinking again)

Julie: No, nothing planned.

Surgeon: Okay, then enjoy Thanksgiving. We'll do it November 30th here at Ochsner and you should be feeling better by Christmas.

He hugged me or some other sort of physical contact while asking me, who is not breathing at this point, if I was going to be okay. Julie just kept talking and asking questions.

So there you go. After many discussions, questions, logistics and calls to the nurse, tami is leaving the station. What she doesn't pack up and take with her to the bin, will either be radiated or chemo-gelled on the spot. Also, they'll do an extensive search for the primary cancer while I'm on the table.

Surgery, recovery, adjusting to new habits, diets and growing more liver. I'm not sure sometimes if I'm smiling, screaming, laughing or crying. I had no idea I'd be so terrified of the thing I most wanted—surgery. (DON'T GET ME WRONG, I'M VERY HAPPY ABOUT THIS.) For now, I'm generally calm. It gets easier every day to visualize little or no tumor.

tami tumor didn't get much smaller, but judging from the position, I'm not sure there was ever an amount that was going to make it easy. stupid cancer picked the middle of my liver to build her apartment with a winding staircase around my vein. The surgical procedure is called a central hepatectomy. My family and I will be in Kenner, LA (NOLA) for 7-10 days at or near Ochsner Medical Center. I head back to Winnie for a short while, then to Austin. Our plans are flexible.

November 30. buh bye tami.

bam, pow, smak, whhheeeeeeeeeeee!

jan

Okay, Okay, So I Took the Summer Off.

Published from Jan's Sunday Punch Blog.

I tried to take the summer off from cancer. (Insert LYAO) Here is an update since my last post. As many of you have kindly pointed out, the last time I posted was April 13. At least it was in 2011.

Last May, my doctors in NOLA reviewed test results from earlier that month, and were surprised and delighted at my 1cm reduction in tumor size. I was pretty damn happy about it, too. They suggested waiting until October to test again. I said no. We compromised by having me take a 5HIAA test which measures tumor markers over a 24 hour period and some blood tests. Those tests, taken in July, came back consistent with results of similar tests. What does that mean? It means I've been stable since April. My next scheduled measurement testing (CT and Octreoscan) was last week. I travel to NOLA again next week to discuss results and options for moving forward. I suspect it will be some sort of radiation treatment again, but slightly different than the Sirspheres.

In May, my local oncologist suggested or "wished for me" the ability to take the summer off from cancer. I laughed at her and questioned her sanity. She said, "I know, it's not possible, but wouldn't it be great if you could just turn it off in your head for the summer?" It was a great idea, and I gave it a good shot. For awhile I found myself thinking about things like crazy deadlines, stupid hackberry trees, non stop heat, appropriate water levels for tubing, the mom and baby giraffes as YO Ranch, missing fireworks on the fourth of July, Mozes and the endless amount of squirrels he chased, SPF ratings for the beach at Surfside and that crazy Labor Day Phase 10 tournament. I won.

It wasn't possible to totally forget about this big ass tumor or whether a transplant is really a viable option or integrating more supplements and increasing acupuncture sessions, and so on and on and on.

It was a busy, fun summer. Cancer or no cancer. I can't make any promises, but you're due an update next week after my trip to the Big Easy. Thanks for the continued support.

smack pow, jan

PS. Goodnight Steve

Someone Else’s Liver.

Since my last post, I traveled back to Rochester, MN for a follow-up visit to the Mayo Clinic. I followed up on the surgeon's suggestion to speak with the transplant team. Last summer, they were the doctors who suggested that while they didn't think I'd have much shrinkage with radiation or chemo, I might be a good candidate for a liver transplant. And in fact, the doctor I met with thought I was a good candidate for transplant. He suggested I do this sooner rather than waiting until later. He said he believed a transplant would benefit me rather than make things worse. They were ready to order the slew of tests to try to find a primary and to make sure I could be approved transplant.

The caveat, to me, seemed to be that I needed to identify a living donor. Someone who is a tissue match who can donate a portion of their own healthy liver. The portion of their liver would then replace my entire tumorous liver. In both patients, the remaining liver would increase in mass to accommodate what our bodies needed. In cases like mine the doctor been more successful in getting approvals for living donors as opposed to a deceased donor. It would be almost impossible for me to qualify to be on the list to receive a deceased donor liver for too many reasons to list in this post. I’ve not been a fan of the living donor. It's risky for the donor and difficult to ask anyone to go through that surgery. The doctor spoke with me about my concerns. He was understanding but didn't agree.

I let him know I would like to continue pursuing other options as long as they didn’t disqualify me for transplant in the future. (MIBG and PPRT) He supported me and wants me to keep in touch. He said I should wait until I'm ready to go through the transplant testing approval process since it is an expensive and extensive process.

I left understanding that he will be presenting my case to the transplant board at Mayo and I should call him when I’m ready. He did caution that waiting longer often means disease progression, but not in every case. It was a great experience talking with him and his team, and the Mayo Clinic is just an awesome facility.

So here is the funny part, in case you were actually waiting for the humor in this post. I brought my family up-to-speed on the appointment in an email later that afternoon. I've included some of the banter between my siblings and cousins.

David (brother 2): "So if I offered you my liver does that mean I wouldn't have one? Or will they just take part of it? I'm not really using it for anything constructive so if some of it would help you out I would be glad to give some up. It would probably mean I would lose some weight and I'm all for that."

Julie (cousin): "Hold on. I think we need to look at how much that liver (David's) has been through. On the other hand mine is pure and I could use a weight loss program. So you could take some of mine, but if you need the whole thing go with David."

Lee Ann G. (cousin): "Maybe we could all just give a hunk. I'm certainly not as pure as Julie, but possibly in better shape than Dave. So if you want to go middle of the road, I'm in."

Chuck (brother 1): "Jan, would you really put Dave's liver in your body? Do we need to talk about some of his history? He started drinking gin and tonic in junior high! I probably have more liver than any of you and there are no transmittable diseases coursing through my veins. You might (and this is my favorite part) even become a little more personable and definitely friendlier if you had a little more Chuck influence. Of course, you might eat a little more too."

Sisters (1 &2): crickets chirping...

In defense of my sisters, Karen and I have discussed our plan. She needs to be able to help take care of Mozie and I if I go through this and Sharon only reads email once in awhile so by the time she reads that I need part of a liver, I will have already found a donor.

I'm moving forward with trying to figure out how to move forward. There are no half ass opinions here. For the past year every doctor or team I've met with believes their way is the way to go. And I've asked the best doctors who treat this type of cancer. My next trip to New Orleans will probably be in May and I believe I will try the next step radiation treatments there. After that, I have lots to think about. And now I have another option which is a good thing.

Thanks to my family for being a constant source of love, support and laughter.

smak and pow,
jan

A Quick Trip to the Big Easy

From Jan's Sunday Punch blog.

My trip to New Orleans went well. Cousin Julie, sister Karen and I went in a little early to enjoy some good food and then gambling later at Harrah's. Not my usual night in NOLA, but we were celebrating Karen's birthday. Karen did well at the machines. Julie and I just sort of broke even.

I did slightly better than break even at the clinic. There was a small amount of reduction. I decided we would measure again in three months to see if I experience any additional reduction from the Sirspheres. If the size of the tumor stays the same or gets larger, then I'll go back to Kenner to have an intra arterial MIBG treatment. And hopefully go to Jazzfest 2011. I haven't found a good description of this treatment or analogy for it so I'll leave it at being similar, but not the same, as Sirspheres. No spheres are involved. But the doctor will deliver a blast of radioactive material to my tumor through my femoral artery.

My next steps, besides continuing to "reduce", are to revisit a doctor at the Mayo clinic to determine if there's any chance in hell I'm a candidate for a transplant should I eventually need it. I've heard Rochester Minnesota is nice in the spring. I visited the clinic there last summer with Sharon, so I suspect it could actually be cold. Looking forward to those nice folks there.

Thanks for your continued support, hugs and prayers.

jan

It Really Was a Good Year

From Jan's Sunday Punch blog.

Happy New Year.

I'm happy to say today is year three since DX (diagnosis). I'm shooting for 20 to 25, but I'm always happy to have just one more. I've been busy testing and preparing for my next trip to New Orleans to see Dr. W. I've had two treatments of Sirspheres. If you remember, those are radioactive beads embedded in my tumor in an attempt to reduce it in size or kill it. Since the last treatment I've just been carrying on with my life while the medicine works. That's what you have to do. You have to forget you have cancer for awhile (as much as you can forget something like that) and do your life. It's gets a little easier each year. This year, no miserable, painful side effects from the chemo study. That made the holidays somewhat miserable last year. This year, it was pretty great. Some abdominal pains and the regular anxiety associated with "not" thinking about cancer. I almost had my head totally together during Christmas. My sisters might not agree, but we didn't ask them did we? I stopped having so many drama attacks around New Years Eve. I think. But I still have some focus and memory problems that might be caused by stress. Which might explain my losing streak in Phase 10 over the holidays. Even though you forget for awhile, you still experience cancer. I know, it sounds weird.

The initial reports back from my local doctor, Dr. BAH, is that there has been no new growth and the tumor stayed the same size, which is good. She gave me a multitude of things to think about and to ask the doctors at the clinic in New Orleans, so I'm all set. Now I just need for Dr. W. to review the reports and determine our next course of action. I'll keep you posted.

smak, smak

jan