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

“My job is to stay alive long enough for the medicine to outrun me and I am not going to be unnecessarily buoyed or unnecessarily depressed by someone else’s experience. I have my own fight to fight.” Elizabeth Edwards

Plan C Part Two

From Jan's Sunday Punch blog.

I've had both sides of my liver radiated with microspheres since I posted last. I was in Kenner, LA last week having the left side done after the right side was initially radiated in August. I struggled with the steroids, depression, night sweats, flushing and nausea, but eventually started feeling better when it was time to have the left side done. The doctors had me do a CT scan here in Austin so I could bring it with me. I picked up the results of that CT scan on Friday evening so I could have it when I left on Saturday morning. I read the radiologists report and the damn results of the scan showed the tumor had grown. Crap. (insert photo of me shaking clenched fists). It wasn't a huge amount of growth, but any little bit at this point sucks. And I couldn't talk to anyone about it until Monday at 8 am. Nice.

I did get to speak with a nurse at the NET clinic in Kenner on Monday morning. There are several reasons the test might have shown an increase in the tumor size and after talking to the doctor on Wednesday before the procedure we determined I needed to get through the whole treatment then we could do more extensive tests that are more comprehensive. The doctor initially said I would probably have an easier time with the left side. We talked about side-effects and how the instant the microspheres hit the tumor they start working so the tumor, as it dies off, gives off lots of gunk (hormones) causing the night sweats, flushing, etc. Not much to do about it but stick it out. After the procedure was over he mentioned he needed to speak to my cousins who were waiting for me. The hot doctor had decided at the last minute to give me a larger dose of the radiation. I responded with "so I won't really have an easier time with the left side after all?" and he replied "yeah, not so much" as he waved his surgical mask and rode off into the sunset. I was sedated so everything had this sort of ethereal, bad movie feel to it.

So I'm off again. I'm moody, crabby, sensitive, emotional and sometimes don't particularly care to be around other people. The nurse said it would pass and I'd probably feel better again by Christmas. Sounds great to me. I'm thankful for those patient folks I work with. The ones who are unsure they should step into my office, but do it anyway and usually with a big smile on their face. Thanks for making me feel normal when everything else isn't normal at all.

The radiology team at Ochsner was great and plenty funny. Lots of Cajun accents behind those masks which made it hysterical while I was in the twilight zone. One nurse asked if she could take a photo or two while I was being prepped for the procedure since the senior nurse was leaving in two days and trying to train everyone on how to do the prep for this type of procedure. Since I was already zinging along on sedatives I said, "sure, no problem..." I hope like hell I never see those photos on any social media sites because they were not a good look for me. That's all that needs to be said about that.

Thanks to Julie and Lee Ann for taking the trip with me and babysitting me while I came out of sedation. Thanks Karen for chauffering me to and from Fannett. And a special shout out to cousin Dana who brought butterfly bandages over so we could get the bleeding near my femoral artery to stop. Sounds a lot more dramatic than it really was. She has a cool head. Love love love to you all.

I'll keep you posted on any further developments, but really at this point I'm just a crabby cry-baby who can be seen laughing hysterically at times. This adventure does still slightly resemble a Fanny Flagg novel or maybe just a bad Lifetime Movie made for television.

smak
jan

Plan C Version VI

From Jan's Sunday Punch blog.

I'm happy to say we finally have a plan for now. Plan C version six. Yes, version six (embolization, study, surgery, chemo-embolization, transplant, oops no surgery—microspheres). I leave for Kenner, LA on Monday to have a procedure that will inject radiation in the form of microspheres into the arteries/veins that carry blood to the tumor. The spheres will hopefully create shrinkage havoc for the tumor. One similar to the Wicked Witch's demise in the Oz movie. The ideal result would be enough shrinkage that would allow a surgeon to consider resection. Most likely, this treatment will occur in two phases, six weeks apart.

Here's a little bit about microspheres: SIR-Spheres (brand name) are tiny polymer beads (about one third the diameter of a strand of hair) that are combined with yttrium-90, a radioisotope that emits pure beta radiation. Y90 (yttrium-90) has a “half life” of about 64 hours, that is, every 64 hours the level of radiation falls by one half until it is effectively gone after 2 weeks. The radiation from Y90 penetrates an average of only 2.5 mm (approximately 1/16 of an inch) in tissue. After injection into the artery supplying blood to the tumors, the spheres are trapped in the tumor’s vascular bed, where they destroy the tumor cells by delivering the beta radiation. The radiation is targeted to the tumor and after 14 days the majority of the radiation effect has occurred. SIR-Spheres are considered a regional treatment as the radiation is directed to the liver and does not affect other organs in the body (hopefully). Since the SIR-Spheres are biocompatible they can remain in the liver without posing any danger to the patient.

Unlike conventional external beam radiation, which can only be applied to limited areas of the body, SIR-Spheres selectively irradiate the tumors and therefore have the ability to deliver more potent doses of radiation directly to the cancer cells over a longer period of time.

So we, Cousin Julie, Dad, Bev and I, head to the Big Easy (Kenner is a suburb of NOLA) on Monday, August 16. The whole treatment process is a two-day outpatient experience (Aug. 17-18). We should be back in Winnie for recuperation by the 19th. If you're in the neighborhood, I'd be happy to whip you in a game of cards. But call first in case I'm in a crabby mood.

That's the plan. I'm excited about focusing on this strategy. I'm glad I learned tons this summer about my options, especially understanding what Plans D and E might be. I'm hoping for the best, again. Thanks for the support and the great notes.

I'll keep you posted and will publish photos. It ought to be an interesting adventure.

smack, jan

Many Opinions

From Jan's Sunday Punch blog.

Hey whatsup? I won't act innocent like it's okay I haven't posted in a long time. I know, I know, a blog is about timely communications... I truly appreciate all the the notes from folks checking on me since my last post.

I've spent the last few months researching and visiting specialists. I'm waiting on the third surgeon to determine if he can do surgery. If not, I've got to determine what the second best option will be. The scenarios: y90 Microspheres, bland embolization and the third is Peptide Radio-Receptor Nuclide Therapy (P.R.R.N.T) treatment in Europe. All have their benefits, and challenges in terms of side effects and insurance. When a treatment plan is determined, I hope to work in parallel with the Mayo clinic to determine if I qualify for a liver transplant.

I'm trying not to freak too much at the delays and the time it takes for everyone to weigh in. I'm also trying to keep it all straight in my head since everyone who weighed in has a different opinion or "idea". I'll keep you posted.

Here are a few observations from the last few months:

1. This tumor takes up 60% of my liver. Fortunately this has not changed much since my diagnosis in 2008. My expectation until this statistic was presented to me by Dr. O'Do at University of Iowa was 40%...tops. Imagine my surprise.
2. My brother David is a wimp about bland food and believes this is the only thing all restaurants in the midwest serve . Next time we'll need to pack a bottle of cayenne pepper sauce for him to have when the whining starts.
3. Midwestern folks refer to parking garages as ramps. Sure, I knew about stuff like pop meaning soda, but it would have been good to know this before we tried to find a place to park at U of I. Not to mention the added drama of David trying to maneuver a minivan. (Thanks for going with me Dave)
4. Not every CT scan requires an enema so it's a good idea not to keep asking "am I going to have to have an enema" every time you have a scan. People look at you funny and say stuff like "do you really want one Ms. Kiker?"
5. The people I met in Minnesota were some of the nicest. Sharon and I were certain the Mayo Clinic was heaven. (not really heaven, but you know what I mean...impressive)
   
6. On several occasions at Mayo, Sharon had to be retrieved from the rotating doors used in every building at the facility. I thought she had become more sophisticated about moving doors since her move to Austin back in 85, but maybe she's reverted back to her country ways after moving to Kyle? (thanks again sister for going with me to MN)
7. Being trapped in a room or car with my dog after he farts. If the the noxious gas he produces was some sort of miracle tumor shrinking treatment, I'd be cured. If there had only been a warning label on his little dog ass before I...
8. I am the 2010 World Cup Phase 10 Champion.

I'll keep you posted when that final surgical opinion comes in. Thanks again for the notes, calls and prayers.

love, love, love,

jan

ps. Thank you Carolyn and Minarovics for insisting (guidance, suggestion, hammer?) on a trip to Mayo. You were right. They are willing to consider a transplant. Thanks again.