Jan’s Sunday Punch

buh bye tami tumor!

2011-11-05T13:45:00.000-07:00

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.

2011-08-22T05:12:00.001-07:00

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.

2011-04-13T19:48:00.000-07:00

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

2011-02-20T15:00:00.000-08:00

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

2011-01-18T19:40:00.000-08:00

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

2010-12-07T21:01:00.001-08:00

“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

2010-10-11T18:29:00.000-07:00

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

2010-08-11T18:55:00.000-07:00

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

2010-07-07T11:57:00.000-07:00

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:

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.
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.
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)
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?"
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)
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)
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...
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.

Blogpost: Oh the Possibilities...

2010-05-15T11:23:00.000-07:00

From Jan's Sunday Punch blog.

Sheesh. I know it's been a long time since I've posted. It's not because things have been boring. Quite the opposite this time. I'll try to shorthand the events of the last three months. I saw a neuroendocrine/carcinoid cancer specialist in Kenner, LA. Recommended "debulking" the tumor in my liver by taking out as much as possible. What? Surgery back on the table? Really? "Yeah it's risky and yes there may be complications, but your best chance at any shot of resetting your clock is to take the damn thing out. Oops, we can't take it out, so let's take out as much as possible and treat the rest with chemo on the spot. We'll take out your gall bladder, the other little tumor you never talk about, and feel around for the primary tumor while we're there. And by the way, this thing is huge."

Wow.

I went back to Houston and talked to my docs at MD Anderson. The recommendation was still, no surgery. No way. Chemo-emobolization or a study to "slow down" the tumor growth, but no surgery. They didn't seem to be supporters of debulking.

Shit. That's quite a difference of opinion. One of the top specialists in neuroendocrine tumors versus the number one cancer hospital in the world. Who the hell's going to make this decision? I opt to see another specialist. Not necessarily a tie-breaker, but to reinforce the recommendation of surgery. I leave for the University of Iowa in Iowa City to visit this specialist in early June.

Meanwhile, more testing to determine the logistics of a possible liver surgery. Not quite a done deal yet. For instance, how much liver must be left for me to survive? What are the vessels like? What type of strain is the tumor having on my liver? Is surgery really feasible? The answers to all these questions, and more, will be determined by any number of 64-slice CT scans, MRIs, etc. I've also been to a couple of support/awareness meetings and met other folks with this type of cancer and even some that have had debulking liver surgeries and more. Great people with plenty of good advice.

And that's where I'm at now. Teetering on the brink of information overload. Testing and waiting. I think, either waiting for a time to make a very hard decision or maybe I won't have to make a decision after all. Maybe there really is only one option after all the testing is done. Nothing happens very fast except the speed at which my mind can produce irrational and desperate thoughts. So for now, I'm willing a tumor to stop growing, drinking wheatgrass again and trying not to think too much. I also see Dr. BAH frequently for much needed advice. I'll try not to wait so long to update the blog again. Thanks, as always, for the constant support and prayers.

pow,

jan

oh shizzle.

2010-02-28T18:35:00.000-08:00

From Jan's Sunday Punch blog posting.

Stability didn't last as long as I'd hoped. I was going for 25-30 years, but obviously not on that particular drug study. The tumor increased a bit in size on my last scan Feb 26. I was promptly removed from the study and the search for Plan C is currently underway.

Dr. F initially suggested a bland embolization. It's invasive and one I'd hoped we'd use as a fallback plan. Dr. F found a couple of drug studies as well. The studies are testing drugs to see if they effectively slow the growth of tumors while controlling the two main side effects of carcinoid syndrome. This time not so much about shrinkage, but control or slowing down the rate of growth. All are good options.

Cousin Julie and I are scheduled to see a Neuroendocrine Specialist in Louisiana today. We made the trip last night after a couple of weeks of mad shuffling to get biopsies, scans and test results to the offices here in Kenner, LA.

I'm not sure what the day will bring, but I'm hopeful and thankful I have options. It's been difficult to get my head around not being stable. "Hopeful" was harder to get to this time. It may be because there doesn't seem to be any interesting drug studies right now that could produce the shrinkage I need without risking growth. The options start being embolizations or other procedures I don't fully understand or haven't researched yet. But that's okay, that's what I'm doing now. "Hopeful" is back. It never actually left, but just needed to move out from under frustration and fear.

I understand there may not be a "silver bullet" out there for me yet, but I'll take a few strategically aimed pezzizles at this point.

I'll keep you posted. smak,
jan

Blogpost: Happy in the New Year

2010-02-12T19:03:00.000-08:00

From Jan's Sunday Punch blog posting.

Happy New Year. Everything's been going fine. Or at least everything I'm going to write about in this blog. (see explanation of gastrointestinal tract from Benched blog) No, no new tumors, just occasional discomfort. I had to skip one dose of Avastin in January because of a gnarly sinus infection, but I did get back on track in February.

Still stable. Feeling fine. We are restaging at the end of February to determine if the tumor is indeed staying the same size. My postings have been less frequent because I'm quite boring as far as the cancer goes and that's a good thing.

What's been going on? I traveled to Scotland for the New Year and had a great time. Lot's of castles, beaches and snow. No problems with meds or angina while there. Enjoyed a Scottish beer for New Years and later in the trip a vegetarian haggis. Not for the faint of heart. Very soon after my trip in mid January, I adopted a dog named Mozes. Or maybe he adopted me? He's beautiful and brilliant. He keeps me busy, entertained, and he doesn't seem to give a shit about cancer. I quite often imagine his internal voice saying, "What do you mean you don't feel well? Getupgetupgetup, let's go, it's time for our walk m'lady." (This happens at 5:30 am every morning.)

I'm busy at work, pottery class and always, always trying to win a lottery. Whether it's the one with the big money or the one where the doctor says "it's gone." That sums it up. I'll check in after my restaging/measurement.

smak,

jan

Stable for the Holidays.

2009-12-24T11:53:00.000-08:00

sta⋅ble

[stey-buhl] adj. exhibiting no significant change

Happy Holidays. I was at MD Anderson in Houston on Tuesday and Wednesday before Christmas for my regular 9 week restaging. My test results were good. Another stable. I'll take it. We (Team Jan) are pretty happy (read relieved) about the news.

The CT scans, blood tests and chest x-rays on Tuesday went fine. Julie was with me as usual. The nausea during the CT scan iodine blast unfortunately permeated my peppermint armor, but I held it together. There have been no real issues with any new symptoms from the Avastin, Rad 001 or the angina.

On Wednesday, Dad and I met with Dr. F, Carmen and various other medical staff. After our discussion about the status of my tumor, my next question (in my head) was, so what happens with stable? How long will it last and what does it mean? Those are hard questions to answer. I looked the word up in the dictionary and frankly, I only really like three of the definitions. The one above and a building for the lodging and feeding of horses, cattle, etc. My personal favorite is the place where Baby Jesus was born, but technically that was a manger (a box or trough in a stable or barn from which horses or cows eat). I talked with Carmen about it for a bit (the stable part, not the horses or Baby Jesus part), and will continue talking about it with Dr. F. in future appointments. Nurse Carmen, if I haven't already mentioned, is in charge of the drug study I'm currently on. She also gave me the 28-day Sandostatin shot. Her motto for the shot: if it doesn't hurt, it isn't working. And she means it, but not in a bad way.

The best part of the trip? Seeing Mrs. Z Huddleston smile after her rigorous 3 week chemo treatment for Acute Lymphocytic Leukemia (ALL). I met her and her daughter, Robin, when I was in Houston at the first of December. She had just been diagnosed by her family doctor and moved her treatment to MDA. We watched the blizzard in Houston that day and talked about computers, resources, cancer, faith, and other stuff. They are great folks from Alabama and I really enjoyed and am inspired by her resilience after 3 grueling weeks of not only getting her head around having cancer, but dealing with being in isolation and the highly toxic drugs. She is a very strong woman with a very strong family to support her. GO Mrs. H GO! You can do it!

Happy New Year. Thanks for your constant support, prayers and confidence that I'll keep on keeping on. I'm looking forward to an awesome 2010.

smack,

jan

PS. To cousin Julie, my Dad, sisters, brothers, family, and friends who take the time to call, email or go to these appointments with me and shower me with a moon full of support. Thank you. One day I'll figure out a way to make those words bigger or at least as big as they feel. I couldn't do this without you. I know I'm not always a ray of sunshine and I tend to lose my sense of humor at times. But thank you from the parts of my heart not experiencing angina. The best parts.

Saved by a Starlight Mint

2009-10-25T08:42:00.000-07:00

Great news. All went well during my cancer restaging/measurement last week at MD Anderson. Even with skipping a dose of Avastin (chemo), I had a minuscule amount of tumor shrinkage and no additional spreading. Onward with another 9 weeks on the drug study.

And yes, it was a Starlight Mint that saved me from the perils and embarrassment of iodine nausea and vomiting.

Each CT scan requires that I drink a substantial amount of mixed berry flavored barium. It's a chalky white, milk of magnesia-like drink that I sip slowly for 1.5 hours so it will light up my gastrointestinal system like a football field when it contrasts with the rush of iodine being pushed through my system by IV. Each time the iodine is pushed through the IV a tidal wave of nausea hits me like a mac truck. (Think New Years Eve drunk. You have to keep one foot on the floor while you are in bed so you'll stop spinning.) I get dizzy, my mouth and nose both wreak of metal.

I've tried different things so I'll stop gagging (and occassionally spewing) while in the CT tube. First I tried smelling alcohol during the scan. Next I tried a wet towel around my neck. At last, one very smart IV RN gave me three Starlight Mints and told me to keep one in my mouth and I wouldn't get sick. I gave one to Julie because she deserved one for dealing with my neurosis during restaging scans. I popped one into my mouth before the scan and it worked. I say saved. The radiologist kept reminding me not to accidentally inhale the damn thing while I held my breath during the scan. Me choking on a mint would mess up her scans. I'm going to give that big needle using IV RN a hug next time I see her.

My Dad went with me for the results discussion on Friday and patiently waited with me for my chemo appointment. It was a long day, but he managed to find a quiet spot with a good chair for at least two naps. I finally heard one of my favorite words from a very professional RN. She said "oops" very quietly while she was trying to put the first chemo IV in my arm...it was awesome. No really, it was terribly funny because you never expect them to actually say it.

happy healing,
jan

PS. The third Starlight Mint went to the chest x-ray guy because I put them in the front pocket of my scrubs and it messed up two of my chest x-rays. I thought it was the least I could do. I suspect he may not have eaten the mint since it was radioactive at that point.

Back in the Saddle-Blogpost

2009-10-03T19:25:00.000-07:00

Back in the Avastin (intravenous chemo) saddle again. I received my 17th dose on Friday. Feels a little like starting over again after skipping a dose, but it's good to feel the awesome healing sting. I also received a flu shot. Nothing special about that except that I now feel impervious to those contagious folks who still come into work anyway, but still vulnerable to H1N1 until Dr. F decides it's a good thing for me. Thank goodness he's big on research.

Good times with Elise on the drive to Houston and back except when the chocolate on her granola bar looked funky. It's the little things that bug us not the big-ass ones. One would expect a brand spanking new chocolate covered granola bar to have grade A chocolate, but maybe our expectations are too high for an Exxon station.

Here are my two favorite quotes for the week in doctor visits. And yes they are absolutely taken out of context:

"Can you turn and face the other direction, I'm right-handed."

"Jan, we don't actually get extra points for killing you. After we've spent all this time and research getting the tumor small enough for resection, there are no extra points for killing you during the surgery."

Peaceful healing,

jan

Benched-Blogpost

2009-09-11T20:35:00.000-07:00

So, I've been benched for a few weeks...sort of.

I didn't receive my latest scheduled dose of Avastin today, in hopes that by skipping this one dose, it will allow a wound to heal. Prolonged use of Avastin makes it difficult for wounds or infections to heal regardless of whether it's a scrape, bruise, or other stuff. I would also be unable to have any sort of surgical or dental intervention for a few weeks if needed. Of course, surgical intervention will be needed one day.

I'll skip about seven days of the Rad001 as well. The discomfort experienced, both physically and mentally, for the last few weeks trying to take care of the problem myself has been pretty high on the pain management scale. Dr. F and study RN Carmen both felt like it was the way to go after a lengthy exam and lecture with handouts today. Of course they had to deal with an impressive, 30 minute argument/tantrum from me over this decision, but I finally relented. Evidently I can miss up to three doses of the Avastin (which I have no intention of doing) without any significant issues. Really? That makes me laugh just typing it.

As far as the "wound" goes... I have a cancerous tumor in my gastrointestinal system. Specifically on my liver, which is a major organ in the gastro-nebula. "The gastrointestinal tract (GIT) consists of a hollow muscular tube starting from the oral cavity, where food enters the mouth, continuing through the pharynx, esophagus, stomach and intestines to the areas where food is expelled." There is no end to the havoc one can have wreak on this system. There is also no end to the countless hours I spend conjuring up analogies for the experiences I'm having so I don't have to say the words for any of the areas where food is expelled. I try to use clever metaphors and then have health-care professionals or friends look at me as though I'm crazy and say things like "now who did this to you?" "Explain to me what a Pantone color is." Or my new favorite, "Now what does a pastry bag have to do with this again?" Unsuccessful metaphors that usually involve Italian words I don't know, cake decorating accoutrement and/or farm analogies. Sigh. (sigh with me here) I think I'm making it too hard. For the sake of my sanity and retaining any semblance of dignity, I'll let you come up with some creative wound/infection I might have on your own. Call it an interactive blog.

My great friend Susan D. accompanied me to this one. She's a great advocate for me. It was a very quick trip obviously. During the appointment she was snapping (photos) away like a mad woman. One of her many careers is documentary photography. Lot's of photos. I'll save them for the book. Susan knows a lot of stuff, but she didn't know cows don't have testicles.

Peace, love and healing. Super fast healing.
jan

PS. Never forget 9-11-01

Pace Yourself-Blogpost

2009-08-23T21:17:00.000-07:00

My latest measurement at MD Anderson this past week showed stable disease. No progression or reduction. I've been on the study combination Rad011/Avastin study for 15 cycles. Almost one year. We'll continue with this plan, which I sometimes refer to as chemo light, and ride "the wave of stability" until it is stable no more. It will actually buy us more time to determine our next steps. Why chemo light? I only refer to it as chemo light because compared to those who receive traditional chemos, or traditional chemos in conjunction with Avastin, I think I have it a bit easier. I'll take my fatigue, itchy rashes, nausea and angina over what some of those folks have to go through any day. However, I would appreciate it if someone would take the barium enemas back.

So, it appears I am still the host nation of one 13.something cm stubborn-ass, currently inoperable, tumor on my liver. Again I am reminded of the wise words of one doctor who said "Jan, you're running a marathon, not a sprint." Most of those folks in that waiting room out there are in a sprint for their lives. You need to pace yourself because your race is a marathon. I've never run a marathon before. I haven't had to sprint since high school if you don't count trying to make it across the UT campus before class starts. I was actually built for the "throwing" sports. Regardless, I'll take it. Smart doctor.

As for my other appointments, all is well. Cardiologist appointment went well. Normal EKG. Blood pressure is fine. Acupuncturist is still sticking me with needles weekly. Therapy, well let's just say it feels like needles sometimes, but I seem to be surviving.

I travelled to my tests with Julie on Thursday and to the appointment and chemo on Friday with my great friend D'Lisa. I've been very lucky to have great folks who are able to drop everything to accompany me. Thank you and love, love, love. (Aside: Sorry Jules, but I think you knew I wouldn't be writing about the latest shitshow CT scan and resulting hilarious humiliation. Maybe some other time if I'm stuck for blog matter or if I'm ever writing a new episode of I Love Lucy.)

That's the latest update. If you are reading this blog as a note in Facebook the blogsite is located at www.janssundaypunch.blogspot.com.

smak, pow and thanks for all the well wishes and prayers,

jan

Sleepers

2009-07-10T12:05:00.000-07:00

I see more sleepers on my trips to MDA than anything else. There seem to be two types of sleepers here. Family or friends of someone with cancer. This is their time to take a break and rest. I know Dad uses his time here wisely by grabbing a nap when he can. The other type of sleeper is the actual cancer patient that's been so medicated, they can't hold their eyes open. The sleepers aren't noticeable anymore, they just kind of blend into the furnishings. I can't see them sleeping nor can I hear them snoring. And I'm certain none of them notice when I snore.

I was waiting to go into my chemo appointment and was sitting across from a woman who was clearly in a fistfight with larynx or esophagial cancer. My clues were the large, angry horizontal scar where her neck meets her chest and her raspy voice. She looked pooped. Radiation battle weary, but a real beauty. She was a tiny, friendly woman who loved to talk, watch One Life to Live, and at the time was either loving or hating her sleep. She drifted off and began to talk in her sleep. She reached for something while she slept. She kept reaching, stretching and reaching until she almost tumbled from her chair. She was reaching for something the rest of us couldn't see. She kept reaching for it as far as she could until she woke herself up. She laughed and started talking more about Dorian Lord, then fell right back to sleep again. I hope she eventually touches whatever it is she's reaching for.

My cousin Janet and Dad accompanied me to this appointment. It was a quick day trip for blood tests, Dr. appointment and Avastin. I warned them both ahead of time it would be a gritty, full of gnarly graphic details appointment. "Not for the faint of heart. Hit the door if it's too much for you", I said. I'll spare you the details, but it did require me rehashing my story four times for four different members of my "dream team". Then again later to Jules who couldn't be there and Becca, Janet's sister, who is an LVN. I'm not sure I've seen my Dad laugh that hard in years, not to mention Janet. I'm certain they weren't laughing at my expense, but at the reactions, questions and suggested solutions for my discomfort. The fifteen minutes we spent laughing hysterically until we all realized we were crying was worth it.

We had a great Kiker Family Reunion this weekend as well. Good times catching up, but once again, too short. Thanks for hanging out with us for the day Janet. I'm glad to know you'd do it again.

smak, jab,

jan

Take My Urine, Please.....

2009-06-18T14:15:00.000-07:00

On Thursday, I spent 24-hours gathering urine for a super special MD Anderson test. I believe my doctor orders a 24-hour urine collection for a hormone test (5-HIAA) in order to determine what tumor markers my body is giving off within a 24-hour period. I gather this in a big orange jug that I keep on ice until its ready to turn into the lab. When I arrived at MDA on Thursday morning, there were no orders for the test. So no one would actually take the jug with my pee in it. I had to ask nicely for a nurse to take it and hold it until the orders were written with the strict understanding my pee would be discarded if no one (DR.) claimed it by the end of the day.

I easily recognized the humor and irony in this situation. I couldn't give my pee away, damnit. I spent 24 hours gathering this stuff and 2 hours trying to find someone to take my big ass jug-o-pee.....sheesh.

I usually carry my big jug in a large bag with handles. I just do. I don't feel comfortable toodling around MDA with a huge orange jug. EVERYONE knows what's in the jug. It's gross, but it's part of the deal. The first bag I was carrying it in actually ripped and the jug dropped about 4 inches to the floor in a very crowded blood draw room. I could hear 20 people (okay, maybe only 8) gasp in unison. All eyes were on me and my jug-o-pee. I started giggling, while my favorite phlebotomist, Mercedes, howled with laughter. I actually got applause from the crowd for not spilling my pee.

Great news today. We measured the tumor with a the usual chest x-rays, blood and urine tests and a CT scan. No change in size for the largest tumor (tami), but the smaller satellite tumor that is connected to her did shrink. This means the weaker cancer cells (or low-hanging fruit) have been eliminated. Now we have to keep pounding away at the tumor with more of the Avastin and Rad001. I thought, as did Dr. F, this was great news. Now, you might be saying to yourself "What the hell Jan? A satellite tumor? I didn't know about anymore tumors..."

Explanation: I have one really large tumor on my liver fondly known as tami tumor. Another, much smaller tumor is located on another part of my liver, but is connected to tami. I call this a satellite tumor. A third tumor is located in a lymph node next to my pancreas. The two smaller tumors are irrelevant unless we get tami under control. We remove tami and the smaller ones are removed as well. We control tami and we control them all. It's all good. Believe me, it's great news.

Sister Sharon went with me this time. She did a good job helping to quell my nerves during the prep time for the CT scan and offered the appropriate amount of empathy after the test and again throughout the evening while I dealt with the indignities of iodine and barium. It was cousin Julie's first time to miss a CT scan. However, she called regularly to make sure Sharon handled things appropriately. Thanks for the massive amount of support. Onward with the study.

smak, pow,

jan

Spinning Around

2009-05-30T06:09:00.000-07:00

Friday marked the end of my 10th cycle on the Avastin/Rad001 study. Time flies. Dr. F. gave me a nice big dose of antibiotics for what may be an upper respiratory infection. The combination of Avastin, antibiotics and my "nerve" pill created an experience similar to what I would imagine it would be like floating on rough seas. The kind of dizzy/nauseous that happens to those who drink too much and must sleep with their foot on the floor to quit spinning. A feeling I seem to recall from my college days.

I hadn't been feeling well for about a week and at last, an upper respiratory infection arose from within. I was thankful it wasn't some new side-effect. I'll feel better in a few days. My blood/urine tests were good otherwise and it was a relatively quick trip to MD Anderson.

I saw the coolest shirt in the Leukemia area on Friday morning. I sometimes have to go there for my blood tests. It's like walking into a party where everyone already knows each other, but could always use another guest. Most of the patients are there daily so there is a sense of community. Not for the faint of heart since the treatments for Leukemia are very aggressive and toxic. A young woman with no hair and a mask was wearing a shirt that said "Jesus Loves You, But I'm His Favorite." She saw me reading it and gave me a big smile behind the mask. She knew. She was very confident.

Karen and Greta went with me to my appointments and hung out with me for the day. We had a great time. I really appreciate the great friends and family who go with me and generally keep me company at the hospital. You know how the old saying goes, "it's not where your fishing but who you're fishing with..."

My next visit is in mid June. Praying for some shrinkage. Anything will do.

smak, pow,

jan

PS. Bill Askins passed away last week after being diagnosed with an aggressive malignant brain tumor in 2007. I heard some truly inspiring stories about Bill's life, his family and his ferociously courageous battle against cancer. My favorite Bill quote and one I have written in many places to remind me constantly is "peace is the absence of fear." My heart and prayers go out to his family for their continued strength.

How to Squeeze a Tumor.

2009-05-07T10:38:00.001-07:00

I took some time off. I had to get my head together. I spent some time feeling sorry for myself after my last measurement results, because that does still happen occasionally. That lasted about three days or until my doctors and my therapist set me straight. I don't know if I've mentioned my therapist yet, but they all put their own special perspective on this situation for me. Then I shifted my paradigm. You see, I still had the expectation of a 3cm or 5cm reduction. A reduction is still a reduction right? No matter how much it is. Hell, I'm still packing my robe and slippers in case they walk in and say, "time to go to surgery Jan".

My paradigm had to shift. So I took a break. I read Nancy and Bill™'s blog. http://web.me.com/nancyaskins/B&N_Journal/News_about_Bill/News_about_Bill.html "April 2009
Tumor recurrence, no viable treatment options, started hospice." Keep fighting Bill and stay strong.

My Carcinoid email buddy, Kristy, from North Carolina passed away. Her tumors had spread and they lost control. http://www.phish.com/news/index.php?year=2009 Her last email to me was positive and strong. "Something would work. It had to." She was even looking forward to her college reunion in 2010. Kristy started the Carcinoid group on our CSC site. She was a great inspiration and teacher to those of us who were new to this type of cancer. She gave great advice and was an awesome cheerleader.

I took some time off and I got my perspective back. It took understanding how lucky I really am for optimism to resurface. Thank goodness, I did get my perspective back.

So let's start this again blog from the beginning: My April measurement results were GREAT. The tumor reduced in size by 1/2 cm. We're still in control and we are still getting reduction.

How to squeeze a tumor? I thought is was a better title than putting "Jan's Loses Her Perspective, But Gets it Back". At least three doctors in the last 2 months, I think the tall Italian fellow was a doctor, squeezed the hell out of tami. The smallest ones seem to do the most squeezing. They get on their tip toes and sort of lunge at the tumor. (I won't name names.) The mechanics behind actually getting under my ribs and putting hands on the tumor is quite taxing for both the doctor and myself. Sharon and Julie usually just think it's funny. Don't ask to squeeze tami unless you actually have a PHD and are technically an oncologist or an acupuncturist. (Oh yeah, I have one of those now as well.)

A lot has happened this past month. I'll be more diligent in the future about posting on the blog. Thanks for the support, the cards and notes. I'm still doing great. Really. I'm still a smartass so that's a good sign. And I am very thankful, so thankful, that we are still in control.

smack, smack,
jan

PS. Rest now Kristy. You will be missed.

Hot D@mn...

2009-03-15T07:34:00.001-07:00

My latest visit to MD Anderson went well. I was very happy friend Stephanie could drive with me and that Ruthie could meet us. We (my cancer team and I) have relatively short appointments between testing/measuring visits. We really just discuss side-effects, refill prescriptions and they send me on my way to receive the chemo (Avastin). And I am certainly not complaining about the simplicity of it after 15 months. I'm on my 8th cycle of this chemo study, with an approximate 16% reduction. My next measurement is around April 16, and I'm looking forward to seeing if this chemo holds up and continues to control and peck away at the tumor slowly.

Each MDA visit is followed by a cardiologist visit the following week at the Austin Heart Hospital. I report in for an EKG and to discuss how my blood pressure is doing. We increased one of the medicines in January which may have caused some difficult side-effects that we are now trying to resolve by decreasing the meds again. Although the drug is helpful for maintaining an angina-free heart, it might have contributed to an increased depression, and caused me to feel listless, unenergetic and sluggish. Yes, "unenergetic" is a word, I looked it up. So I am still Crabby-Spice occasionally, but most of you knew that already. I'm working on the other stuff with a trained professional.

In general, ALL IS GREAT. Having another birthday is always a GREAT sign. It's actually more of a HOT DAMN I MADE IT ANOTHER YEAR kind of a sign!

I now leave you with an awesome quote. It's one of Nancy A's faves. Life is a roller coaster, be careful not to spill your drink.

smack,

jan aka Crabby-Spice

Lean Into It.

2009-02-16T19:40:00.000-08:00

I was in Houston this past week for another three-cycle measurement and a 21-day jolt of chemo. I had a small amount of reduction, around 1cm. This shrinkage will bring my total reduction percentage up to approximately 16%. I'm heading in the right direction. However, this number is not anywhere near a size that can be surgically removed because of the position of the tumor and two key blood vessels. Another issue is the amount of blood flow to and from the tumor. When tami tumor set up camp, she drove her stakes in deep. I think it is safe to say that as long as this chemo is reducing the size of the tumor and/or controlling growth, we are in for a long haul. Lean into it. I am.

Still no signs of a primary tumor.

I met my new study RN who I will call Harley RN. The bike story will come later. I'll work with Harley RN rather than RN Melissa who has moved on to do other things and is no longer with MD Anderson. Dr. G and PA Brand have increased my dose of a med to help with the blood pressure. It just makes me a little crabby at times. Cousin Julie's comment was, "hard to tell a difference because you're so crabby anyway Jan". She means it with love, but not hugs. Julie is not a hugger.

I traveled from Austin this time with our family friend, Ruthy. Ruth managed to bullshit her way into the IV room with me to watch. She told them she traveled all the way from Paraguay so she needed to come in with me. Nice move. I'm always amazed at how few boundaries I really have or how laid back MD Anderson seems to be at times. When they start letting Julie give me the IV, we might need to be concerned. She asks frequently if she can give me the IV using the magical "veinfinder" machine, but they just laugh at her. Incidentally, Julie has never asked if she can administer the contrast enema....

Cousin Lee Ann and my pal Greta also joined us. Greta gave me a kickass necklace made of crystals and stones to heal and calm me and my liver.

I'll keep you posted. Thanks for your support.

smack,

jan

PS. Since Nurse E. has been the one to give me the last three contrast enemas during these CAT scans, I've decided it might mean we are married n some cultures. I haven't told him that. I'll just start referring to him from now on as my enema husband, or my "husbenema". Who says I'm no good at long-term relationships?

Unexpected Inspirations

2009-01-25T07:30:00.000-08:00

Hello friends and family. Chemo blast number six went smoothly. Dad sat with me while I was getting my Avastin drip. I had no scans again which has been nice the last couple of visits. No disrobing and no trips to/in the tunnel. My blood tests are still doing fine. And for the most part I am feeling well. I'm struggling a bit with my blood pressure and angina again. I haven't had to worry about those for the last two cycles, but it appears we may need to make some further adjustments. I check in with Dr. BAH and the cardiologist, Brand PAC, this week which will be helpful.

While waiting for my appointment at MDA. I had a great visit with a woman who had an aggressive type of cancer in her pancreas. Her doctor had been trying to reduce the tumor so they could operate and remove the tumor and some other "optional organs". She was absolutely giddy with excitement and a little nervous at the prospect of finally making it to surgery. Her surgery is planned for Tuesday. I met pancreas-lady while six or seven of us patients were waiting around to be weighed and measured before our appointments. There seemed to be a backlog and she was just chattering away to a few of us. She asked all about my cancer and another woman's (lung-lady) as well. She continued to talk with excitement about the preparations she'd made for her surgery on Tuesday. She had a "bring it on" attitude with the training and stamina preparation to back it up. It was as if she was experiencing the runners high at the 20 mile mark. We didn't talk long before I had to go back with my Nurse Bigshot. We gave each other a hug for good luck and strength, then we went our separate ways.

Over the last few weeks I've also had the chance to meet Sally, who is an awesome firecracker of a gal with that same "bring it on" attitude, and who has lived for twenty years with NETS in her liver. She's been gracious enough to share her experiences with me which has been invaluable. It's been especially great to hear about her longevity with carcinoid cancer.

I am eternally grateful for meeting pancreas-lady and Sally. I hope I have the strength to see past the journey to surgery and the anxiety over having over half my liver removed to be excited and relieved to have finally gotten there. It is a necessary part of the process, but I think I can finally "visualize" the other side with confidence.

Thank you both for being so damn inspirational and friendly. Bless pancreas-lady and her family during her surgery. I told her I was certain she was going to do brilliantly and gave her the STAY STRONG SISTER battle-cry.

I'm also sending a shout-out prayer for my friends Clear and Christian in the UK. Love, love, and strength. Stay strong.

kisses, jan

Happy New Year

2008-12-30T11:59:00.001-08:00

Happy New Year. I've been looking forward to a new year. I keep thinking it has to be better than 2008, although there were some high points. In general, I'm glad to be moving forward. Still.

I'm on cycle 5 of the Rad 001/Avastin study. My visit to MD Anderson this week was very positive. No scans, but I had a GREAT, yes all caps great, exam, blood and urine tests, and another dose of the Avastin chemo. My white blood cell counts are not dropping, which is good news. My previously troublesome hobgoblin tests are now normal and it appears I'm the healthiest I've been for quite a few months. Dr. F and Mel seemed really, really happy. It was as though I made a 98 on a test after making numerous borderline Ds. Not quite 100%, but still great. I think my liver even felt a bit smaller when the doc did his routine punch and jab exams. Yes, Dr. F even practices his own punches on our gal tami tumor. And, it seems as though we might have the angina/heart side-effects under control for now.

I'm coming up on my one-year diagnosis anniversary,.. birthday? Not quite sure what to call it. But yes, it will be a year this month. I'm not sure what the recognition for an anniversary like this should be. Any other “celebration” BC, would have required a Makers Mark (straight up) with a menthol cigarette. But that hardly seems appropriate with huge ass cancerous tumor in my liver. Fireworks maybe? Or just hanging out with family and friends and I've been doing that since Thanksgiving. So maybe I'm already doing whatever I'm supposed to be doing to recognize tami's introduction into our lives.

Christmas with Sharon, Mark, Cory, Luke and Sam was awesome. There is nothing like hanging out with a 4, 5 and 8 year old on Christmas morning. It was a Superhero and Star Wars Clone Wars day. And for as many games of Phase 10 that were played during the Hurricane Ike evacuation, Thanksgiving, Christmas and New Years, it is safe to say my status as Phase 10 champion for 2008 is still intact. I cannot wait to read the contradictory responses to this one statement.

I'm looking forward to 2009. I'm looking forward to this damn tumor moving out, with the help of Dr. A, of course. I'm looking forward to being able to say I did kick cancer ass. My heartfelt thanks to my family and many friends who have been there for me during this very difficult year. I cannot imagine how much harder this would have been without your constant love, hugs, prayers, well wishes and support. I feel very blessed. And yes, I appreciate the hugs. Really.

Happy Holidays,

jan

And Then it Started Snowing in Houston....

2008-12-10T21:42:00.000-08:00

I got great news yesterday. tami did a bit of shrinking since our last measurement. It appears she's reduced approximately 10.3% in size. This equals a little over a 2cm reduction in overall size. There is still not a "magic" number out there for a size we need to get to because much of it depends on the reduction of size and how it pulls the tumor away from the portal vein. The plan for now is to continue on the current study with the chemo provided every 21 days.

I travelled to Houston with Rana and met Julie and Greta there. These wacky gals hung out with me for the CT scans on Tuesday and Rana, Greta, Dad and Bev were there for the clinical appointment with Dr. F on Wednesday. It was a very long day, and then it started snowing flurries in Houston. Crazy. More to come....

smack,
jan

Oh the Suspense....

2008-12-06T16:44:00.000-08:00

Yes. The suspense is making me crazy. I head to Houston this week for relief from the suspense of whether or not this study is shrinking tami the tumor. It would be awesome if the Dr said, "tumor? what tumor Ms. Kiker?" I don't think that's going to happen, but I'm hopeful there is shrinkage.

I'm packing my robe and slippers......just in case. Stay tuned.

smack,
jan

Time Flies

2008-11-23T22:40:00.000-08:00

Sheesh, it's been a month since I've posted. I'm doing fine. I'm on my third 21-day cycle of the Rad001/Avastin study. I've had two doses of Avastin. I don't feel quite as flaky and forgetful as I did on the Xeloda/Temodar, but I am having some of the same angina problems. Kick-ass, sucker-punch angina. Fortunately, I'm being monitored closely by the oncologist and cardiologist. I've had an EKG and a PET scan of the blood flow in and around my heart. All tests were normal and didn't require further action. I have a handy nitro spray that I carry with me everywhere, which helps to keep the angina under control. It's sometimes very effective when I pull it out in meetings. It sends a strong message...

My last visit to MD Anderson was interesting. Always good to see the tumor removal team. I performed my duties as a study patient, had a shot of Sandostatin and received my second infusion of Avastin along with a new supply of Rad001 pills. To my delight, my brother Dave came with me to the infusion area where we watched a History Chanel show on Trucks, another on Horses, and of course, discussed the bodily functions a cancer patient experiences. Important to note here: I am not the only member of my family who discusses bodily functions. Not even close.

I have a couple of funny 24-hour urine test stories to write about, but I've decided to devote one whole blog to the lovely experience when the time is right. I'll take my next 24-hour urine test into MD Anderson around December 10. I know you'll be on pins and needles in anticipation of that one combined with tales of traveling the three hours to Houston while trying not to have to stop at a gas station to pee, which would mean bringing my big orange jug into the rest stop with me. Good times.

Yes, my next visit to MD Anderson is around December 10. I'll stay a bit longer for this next visit as I'll have a measurement to check the progress of the three cycles of the study. I'm hopeful the results are shrinkage and the quirky little aches and pains in my chest will be worth it.

Thanks for checking in and all the positive notes from the last blog.
smack, smack
jan

Ten Alternative Methods for Removing tami (On Jan's Planet)

2008-10-22T10:18:00.000-07:00

One of the ways to live life with tami without going nuts is to visualize her departure. This is usually something that happens many times throughout the day. It's a constant way to make her (and her friends) feel unwelcome in the "condo" called Jan's liver.

The following removal methods are not restricted by time, space or reality:

The largest wave from hurricane Ike would sweep tami out-to-sea along with Dr. Ben's beach cabin.
I could remove my liver during pottery class and place it on the potters wheel. After centering on the wheel, I'd use my hook to scrape tami's fat ass off my liver. Of course, my liver would be replaced after I smooth any rough edges with my sponge. tami and team would be fired in the kiln and turned into an ash tray or a toothpick holder.
D'Lisa could shoot tami off my liver with her deer rifle. Yes, this is tricky but, she could do this without ever harming me. After retrieving the tumor, she and Mark would have tami stuffed and mounted for the deer camp. tami would stay there for eternity collecting dust, cigarette butts, beer caps, etc. (Please note, before and during the time of removal there would be no drinking by the shooter.)
Dennis Quaid would travel to the tumor site in that tiny spaceship he used in Innerspace (1987). Cory, Sam and Luke would go along with him as backup support with the swords and Ben 10 watches they use on everything else that moves. Once inside, they could successfully use all tools necessary to remove and obliterate all tumors. When finished, they'd come back home to a Happy Meal, complete with chocolate shake and toy suprise as a reward for the hard work.
A new televisions series on JBO (Jan's Box Office) with a hot tampire named Bill as the main character. However, this tampire doesn't feed on blood as vampires do, but on tumors. I play the sassy, southern waitress (tampire banger) Bill seduces and feeds off of. After months of crazy tampire antics, tami and her friends are removed and... I'll work this one out offline.
I'd beat the shit out of tami in a Phase Ten tournament. The winner (me) would leave the table with a clean, tumor-free liver and a clever tee-shirt.
Elise and Susan decide to try removing tami with shuffleboard weights after a night of karaoke and drinking at Lovett's in Port Aransas. tami and I are situated at the other end of the table and the removal process begins. Both ladies consider themselves to be experts at shuffleboard and karaoke after a few drinks. It could work.
Fred Flinstone and Barney Rubble would use those big clubs on tami and smash her to a pulp. Then Fred would effortlessly peel her away and sling her into a new century. Preferrably not this one.
The alien spaceship that will be coming down to collect Dubya will also pick up their missing tumors, including tami and friends, before returning to the Mother Planet forever. Their planet will give them all the love and compassion they need so they no longer have to try to find it here.
No explanation needed.

Seriously, all is well. I've had a sinus infection this week, but should feel better any day now. I'm excited and very ready to head back to Houston for my first dose of Avastin next week. I'll take this drug by infusion rather than in pill form like the Rad001. I feel really good about this protocol and I'm putting all my positive energy into helping it work. Thanks for your prayers, kind wishes and for checking in.

punches, jan

PS. Remember to vote.

The Silver Bullet

2008-10-12T10:12:00.000-07:00

I thought I'd use an actual photo of a silver bullet rather than the Coors Lite Silver Bullet, but the ones I found looked too phallic and weird. So you get the idea. And trust when I say it pains me to use the word "phallic" in a blog.

I started the study last Wednesday. http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2006-0954 Let's call it the Tumor Eviction Project. (Or something else clever if I can think of it.) The first drug is Rad001 (Everolimus). I take this drug (in pill form) daily. Later in the month I'll add a drug called Avastin (intravenous). During my visit to MD Anderson, I was scheduled for a CT scan sans barium. CT scan with a twist. The twist was to drink a huge amount of water, as much as I could stand. I was given an IV for iodine and whisked away to the scan tube. The researcher studying tami explained that she'd be observing the blood flow in the tumor in addition to making scans. She also explained how I needed to breathe and that I'd feel a little sting at the site of the IV when the iodine was released. What she meant to say was, “Unlike the other CT scans you've had Miss Kiker, when the iodine is released, your arm is going to feel like it is going to explode. Just ignore it. Perfectly fine.” And I did.

After the scans and blood tests, I met with RN (Research Nurse) Melissa. She's very cool and got me started on the study. She also gave me a home test to turn back in when I visit on October 29. It's like college except the home test is a 24-hour urine test. So maybe not so much like college. If you see me walking (which you will not) around with a large orange jug, don't stop me and don't ask.

I also met with Dr. F. to discuss the scan results from the previous visit and then we were on our way back to Austin. I check in regularly with Melissa and keep a journal of information to turn in every 21 days. I'll keep you posted if anything exciting happens.

punch, jan

Plan B

2008-09-26T19:44:00.000-07:00

No shrinkage. I traveled to appointments at MD Anderson last week to measure tami again. There has been no additional shrinkage. Now we're moving to plan B. Plan B is the original plan A we were going to try back in April, but I had to be on the Sandostatin shot for at least two months before I was eligible. Plan B is the Exploratory Study of Avastin and RAD001 in Advanced or Low or Intermediate grade Neuroendocrine Carcinoma. Protocal 2006-0954. For inquiring minds who want to read further: http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2006-0954. Since we had a couple of months before I could join the trial back in April, we decided to give the combination of Xeloda and Temodar a try. It was a noble effort with good results at first, but we are no longer getting the results I need. Time to move on. I won't be sorry to see the Xeloda go, but I do wish it would have worked.

If I'm a qualified candidate, I'll start as soon as next week on the pre-testing for this trial. I am looking forward to being in an actual study. I'll need to spend a little more time in H-town and more frequently, but it'll be worth it.

On another note, I've added a new Doc to my arsenal. Dr. L. is a Nutritional Oncologist here in Austin. He's great and he's helped me understand some dietary benefits of eating a certain way, discontinuing some of my current diet practices and trying new supplements. Sure, I'm a little crabby about not having tomatoes or pineapple, but big picture, I can do without. Oddly enough, I could give a rats arse about not having chocolate. Who would've thought?

I'll keep you posted so keep checking the blog or my facebook page for updates. I feel great, especially since I haven't been on chemo since August. Thanks for the support and prayers.

smack, smack
jan

PS. I posted the photo of my lovely yellow drink (in the previous blog) while I was in Houston. It was my prep for a CT scan. Contrary to some of the comments received after posting, it's not actually urine. Dr. F. does not make me drink urine as a treatment for this cancer. He's not like that. I believe it is barium or Gastroview. Apple juice is mixed with it to make it taste less like ear wax. Yes, ear wax. Don't act like you don't know what I'm talking about. Everyone knows what ear wax tastes like.

And again....

2008-09-26T07:38:00.001-07:00

“you'll just need to drink this last one mizzzz
Kiker then we should be ready for your scan”......

C-Card Etiquette

2008-08-26T19:27:00.000-07:00

It's tricky no matter how you slice it. When to use the information, when to keep it to yourself. I never meant to let it slip. It just happened. And, of all places, at Office Depot. The nice young man started asking technical questions about the voice recorder I needed: what kind of software, blah, blah, blah. And then it slipped. "I need it for a doctor appointment," I said. "Why?," he asked. And then I couldn't think of a cover-lie quick enough so I just said it. "Because the chemo makes me forget things." I could have said anything here. I could have said it was because I have the attention span of a gnat, or because doctors make me nervous, but noooooooo. That young man spent 15 minutes trying to find the recorder I needed, with no luck. He was devastated. If he had had a sewing machine and could have sewn me one he would have. He was on the phone locating exactly what I needed, where, drew me a map, made notes for me, etc. He stopped short of asking to drive me, only because he still had two hours on his shift.

This example is a perfect example of needless c-card usage. In fact, I think the only appropriate use is if you get pulled over on your way to an MD Anderson appointment in Houston. I was given strict instructions from both Sharon and Steph that I would be pulling the c-card in that instance…or more accurately, that they would be using the c-card on my behalf, pointing at me if the officer had any doubts. I've also included a list of other appropriate and inappropriate uses I’ve come across on this adventure:

Any situation involving public vomiting will need the c-card unless you just don't care if someone thinks you have morning sickness. However, if you puke your daily wheatgrass drink, you'll have other things to explain to ensure no one calls for an exorcism.
When there are three people and only one camping mattress, you're going to need to pull the c-card and, in my case, clutch your upper right side for effect. (Used this one on my nieces. They won't fall for it again.)

Don’t:

Any situation involving an embarrassing incident in a public bathroom. Don't worry about using the c-card, just get the hell out of there.
Don't use it at work if you can help it. It just makes folks worry and you should be able to get by with a "need-to-know" scenario here. Only those who need-to-know and those who have to help you wrangle your insurance coverage.
e-harmony dating: honesty is the best policy here, but on a need-to-know basis only. Otherwise, they just start worrying about when your hair is going to fall out.
Let people assume you are not drinking because you are righteous or pregnant. Keep them guessing. No need to use the c-card here. You'll kill the mood of the happy hour, party, etc.
Don't use it at Sephora. I only mention this one because it almost slipped out when I was shopping for a moisturizer that would work for my drying/aging/over-medicated skin. I stopped there right after the Office Depot incident so I was still not on my game.

I'm sure I'll come across many more instances of proper etiquette with cancer. It seemed like good subject matter tonight because nothing really exciting is happening. I'm on the dreaded day ten of the fourteen-day cycle. The med prescribed to make me sleep through the Temodar tonight is actually making me slightly nauseous and I clearly cannot sleep.

smack, smack,
jan

Wise Words from a Friend

2008-08-17T16:52:00.000-07:00

Greetings. It has been too long since my last blog. Apologies, but you know this cancer thing isn't always as exciting you would think. (A fact I am very thankful for.) If it weren't for the excitement provided by my insurance company, who is not approving this course of treatment, I'd say it is similar to watching paint dry. (Again, very thankful.)

I had a quick cardiologist checkup last week. I got a thumbs up to keep on keeping on. I also visited MD Anderson last Friday for a quick appointment where some of the discussion was how difficult my insurance company was being. Trust me, you really want those appointments to be about the TUMOR, not about the difficulties with insurance. I did get the once-over from Dr. F. I also got a new prescription for magic, no vomit, pills, which was nice. In general, a good visit with my marching orders to proceed. Afterward, Julie and I had lunch to discuss the whole morning. We like to recap.

I start my next round tomorrow, and it will last for fourteen days. And sometime in mid-September, we measure again to see if there has been any shrinkage. At this time, we do not know when I'll be scheduled for any other procedures besides my 28-day octreotide shot and my CT scan.

As I was driving home today from Fannett, I kept trying to put my finger on what makes this all seem so messy and random. I just kept thinking about what a mess this is. What a mess I am. Even my head is messy. When I arrived home I had received a couple of packages. One contained the chemo and other a small gift sent by great friends. The package came with a note as well. It was the note that helped me put my own mess into perspective. This should get me through chemo and enemas, because it was filled with good mojo. "Life is messy. One day at a time, my friend." This may not sound as profound to you as it does to me, but coming from a family who is going through their own special "mess", it seemed profound. Thank you Team Bills. Thank you from the bottom of my heart.

kisses,
jan

Doing Just Fine.

2008-07-30T09:59:00.000-07:00

Greetings,

I don't have much to say this week. I just wanted to check in. It has been many days since my last communication so I thought I'd just ramble a bit. I had some difficulty getting my chemotherapy approved by my insurance this time which I found odd since this is the FIFTH FREAKING TIME I'VE BEEN PRESCRIBED THESE MEDS. We worked through it and I was calm, cool and collected. I only elevated my tone once.

Another tidbit you may not have known is that I can possibly use my cancer/chemotherapy to get out of jury duty, but cannot use jury duty to get out of going through this d@mn cancer. Seriously.

I'm on day ten of this round of chemo and doing fine. Unfortunately my chemo buddy, Bailey the dog, won't be here to sleep with me this time. Bailey was one of my sister Karen's dogs. I have a bedroom at sister's house which I stay in during the five days I am on Temodar. I don't like to throw up without someone in the vicinity. (I don't stay at Sharon's house for this event because I only have a bottom bunk there. I would also have to share a bathroom with three small boys, one of whom isn't very good at his aim.) Anytime I spent the night at Karen's, Bailey always slept with me in my room. I think she was afraid she was going to miss something fun. I used to think she slept with me because she felt guilty for not being one of those "cancer sniffing" dogs that could have sniffed out my tumor before it reached the "oh sh#t" stage. Dogs don't feel guilt, silly.

Unfortunately, Bailey passed last week so she won't be joining me for the rough days. It seems she was dealing with her own tumor which caused fluid to build up on her heart. If I were only a "cancer sniffing" human, I could have saved us both. We'll miss her. I do recall, however, that at the first sign of a gag, Bailey was on the other side of the house for the rest of the night. My up-and-down trips to the bathroom all night seemed to hinder her rest. I would sometimes catch her and my sister at the end of the long hallway checking in on me as I hugged the commode (toilet if you're not from the South). Occasionally I would hear a tiny "Jan, are you alright?" coming from the other end of the hall. I would just wave them on. Nothing to see here folks. I'm already wearing a ponytail holder so no need to hold my hair back. Move it on. Shows over.

There's your ramble. Thanks for checking in on me. Goodnight Bailey the dog.

smack,
jan

Stay the Course.

2008-07-18T19:36:00.000-07:00

I had a great talk with Dr. F. this evening and the conscensus was to continue on with the current chemotherapy regimen. The shrinkage from the previous round of chemo was not significant and it appeared there was possibly more necrosis than shrinkage. Necrosis is the death of cells or tissues through injury or disease, especially in a localized area of the body. However, Dr. F. still has to get the final numbers from the test analysis.

My questions back to the good Doctor were about how successful any more of this chemo treatment might be. "Is it possible we've seen all the shrinkage we're going to see and that it is unlikely we'll see any additional shrinkage?" "Are there other things I can do to contribute to the success of this chemotherapy?" etc. Dr. F.'s response to these types of questions was helpful for me to put this into perspective. One of two things will happen. Either we will be successful in the continued shrinking until it gets small enough for Dr. A. to resect, or it may not work and we'll need to change strategies. We'll try something else. But for now, the best thing I can do it to keep going and use the Xeloda as consistently as possible for maximum effect. And somewhere in there I believe he said "kick this cancer's ass" but I could be wrong and if so, he'll let me know soon.

To be honest I'm not sure if I'm experiencing the relief of not having to have surgery yet, or the dread of additional chemo. I didn't feel ready to be whisked away to surgery quite yet. The photos of the tumor on my liver still looked tricky. Tricky to remove. I know, I know, this isn't a Milton Bradley game of OPERATION and an electric current isn't going to buzz if we do something wrong. And thank goodness it isn't me that has to do it. Dr. A. is a very qualified surgeon.

I know, I just pretended to be ready in previous blogs. It was truly the scans that threw me. Oh I'll be ready next time. I'll be ready alright. Bring it.

Chemo starts Monday. More to come.
Jan

We Got Shrinkage.

2008-07-16T19:20:00.000-07:00

It's not as much as the previous round of chemo, but the tumor is still getting smaller. I don't have an exact number yet because they were still doing their technical calculation stuff. It isn't a real tape measure after all. Next steps are for Dr. F. and Dr. A. to discuss whether the shrinkage is enough to operate or to determine if we (meaning me) should continue with the chemo. The doctors will have that discussion on Friday and let me know by phone.

The testing went well. I spent quality time with my great friend Greta, cousins Janet and Julie and sister Karen. As I mentioned in the previous blog, Julie provided comic relief in the staging area. The staging area is where I have to drink the last glass of barium and change into scrubs. At one point I believe the nurse was about to pee herself laughing so hard at Julie. She really shines in these types of situations. (Julie, you may want to consider a career change.) The staging area is also where I tend to start freaking out. Mainly because they've made me drink about a gallon of barium (and yes it tastes like ear wax) and the impending gloom of the enema. This barium, combined with the sensation of the iodine in the IV, the enema, the holding of the breath and the scan tube all work together to create a magical, claustrophobic situation for me. Julie actually came in the scan room with me to snap a few which I will post later. Then Nurse Ramone chased her out when the dirty work was to begin.

I had a good visit with Dr. F. He does a great job reminding me we are on the right track. Thanks for all the great emails and good wishes after the previous blog. Results on Friday.

Photos

kisses,
jan

That #@%* Question

2008-07-14T21:19:00.001-07:00

I spent this last weekend in Fannett, Texas with my family. It was our yearly Kiker Family Reunion and my first chance to see many of my cousins, aunts and uncles since my diagnosis. I played in the family golf tourney on Saturday. I couldn’t quite make 18 holes because of the treacherous Southeast Texas humidified heat. I also find the alligator warning signs that are posted on the course disturbing. Not to mention, the actual alligator swimming in the water around the fifth hole.

My cousin Martha had a particularly hard question for me. One that my sisters, Dad, and cousins make many little references or jokes about on our visits to MD Anderson, but never actually discuss.

It was a simple enough question. She had just one more after the questions she had asked the day before. “I mean, how are you dealing with all this? It has got to be hard without your Mom being here or just being able to talk to her. Wouldn’t it be better with her here just to talk to or do you think, thank goodness she was spared all this”….?

Damn. I hate that question.

This is a tough one, and a question I’m seldom able to choke out an answer for. Our Things to Invent List, that Julie and I started on my first visit to MD Anderson, not only includes inventing a better tasting Barium, an enema-less CT scan, and a color poop chart/wheel for really defining color and shape for your medical team. It also includes trying to come up with something, some sort of Heavenberry device to call Mom. Not every day, just occasionally. Sharon could use it when she needs advice on raising the boys. Do I wish my Mom were here? EVERY SINGLE DAY. Do I wish my Mom were here to go through this? It’s such a tricky question and I still don’t have an answer for it. Ultimately, I think I am thankful she doesn’t have to go through any of this. Maybe the ones who are here, are exactly the ones who are supposed to be here with me. Martha, give me some time with that question. I’m certain it’s something I’ll need to work through with a professional.

The time I spent visiting with my family was great. It made me realize I’m not going through any of this alone. It really is a village. This crazy adventure is happening to all of us and hitting pretty close to home for some who love me. I have a ton of support in many places. Aunt Dorothy reminded me the Methodists are still praying for me. Thank you again for that.

As for tomorrow, I still have my shrinkage number in my head. I feel good about it. I’ve also decided to pretend like I’ve never heard of having an enema with a CT scan in my life. I’ll act totally surprised and indignant, as though I have no idea what the nurse could possibly be suggesting. I’ll say “seriously, I’ve never had one of “those” before and this is my third scan.” It doesn’t take much in the way of silly diversions to make it a bit easier. It will also be Julie’s first time back in the “staging area” before the scan, which should also provide plenty of comic relief.

For my family and friends, who really do believe I will have no problem getting through this “blip in my life”, thank you. Thank you from the bottom of my heart. Your confidence gives me strength.

Photos

smack, smack,
Jan

PS. My niece Haley, who teaches fire safety, suggested I try a stop, drop and roll move to avoid all enema situations.

Finally, an Update.

2008-07-07T04:27:00.000-07:00

It’s been awhile since the last update, but oddly enough, you haven’t missed much. There was a trip to Crystal Beach with my family. I had two days of quiet before my sisters, nephews and niece arrived. I’m afraid at this point I’m used to the noise so it was a welcome relief when “the boys” and Tori arrived with fishing poles in hand. The highlights: many naps, crossword puzzles, 2008 Crystal Beach Phase 10 Championship (I came in third), fishing with Ben, D’Lisa’s funniest joke of 2008, a trip to Galveston with Beverly, absolutely no sunburn since no one would let me out in the sun, and a barbeque with the whole family.

Sure, there are more stories, like Sam (4) actually trying a wheatgrass shot and abruptly spitting it back out in my hand while choking out the words “ Awww gross Aunt Jan.” There was also another dubious incident in the bathroom, but all I could hear was Sharon putting everyone in timeout while she tried to figure out exactly what had been put into the toilet. Good, good, times. You can’t find that kind of fun in any luxury beach resort.

I started my 14-day chemo on the first week of the beach with little or no problem walking, exercising, napping etc. I had a couple of lengthy bouts with chest pains toward the end of the week, so I was taken off of the Xeloda until the cardiologist could advise. His team tweaked my drugs a bit and I was back on the Xeloda by Tuesday with no issues. Dr. BAH’s office gave me magical no vomit pills for my five days on the Temodar and they were very helpful. No heavering so far.

In general, all is well. I go to MD Anderson July 15-16 for more measuring. Again, I’m taking a fiercely optimistic approach and packing my robe and slippers, just in case. I have a number in my mind. I say it several times a day. The number is larger than 2cm, but smaller than 5cm. We’ll see.

“But how’s your head Jan? How are you handling this?” Those are questions I get quite frequently. I flounder between trying to grasp for some sense of normalcy versus being reminded regularly that I do have cancer, and that for 14 days of the month I struggle with the meds and my focus, concentration and being overwhelmed. However, I know I’m in good hands and the chemo is working. It’s actually shrinking the tumor.

Thanks for being patient with the updates and for all the support here in Austin, Houston, Fannett, and other cool places. I get lots of email and cards. Thanks and keep them coming.

Photos

smack,
Jan

Bubkes

2008-06-19T14:12:00.000-07:00

I visited MD Anderson yesterday. I drove from Austin with pal Stephanie. We met cousin Julie so she could join us for the meeting with Dr. F. Stephanie and Julie provide tremendous support, humor and relief from having to drive myself to Houston, on these visits. (No good comes from me being alone with my imagination 3 hours before or after an MD Anderson appointment.) No time for puzzles. We went straight in and got to the heart of the matter with the MD Anderson team.

“Jan, I’m going to teach you a Yiddish word. Bubkes. This means nothing. You’ve got one big piece of cancer, other than that, bubkes.” This was Dr. F’s response when I drilled him about finding other cancers in the CT scans taken in May “You’ve had time to really study those tests. Is there anything in my lungs? What about my intestines?” Bubkes. Good news.

We reviewed the CT scans from May again. It’s really all about tami and getting her the hell out. Dr. F. reminded me that my focus needs to be on the liver tumor. “We have a long way to go.” We are not trying to reach a certain size at this point. The desired shrinkage size is balanced with my tolerance of the medicine and side effects. I think it’s one of those things we’ll know when we get there.

On another note, my rash of unknown origin has a possible origin. It seems a small number of patients experience a severe rash from Temodar. Once again, I seem to be in that small number. As a result, I will take steroids with the Temodar (5 days per cycle). I said, “No, I don’t want to take them.” I was oddly assertive. Next, I pleaded. I gave a good argument why I wouldn’t be taking the ‘roids, but was overruled by Dr. F. He and nurse Bigshot both got the look on their faces. Many of my health care specialists give me this look. It often means, Jan, you've been reading again haven't you? The one where they tilt their heads to the left, listen, nod and smile patiently while I finish whatever rant I am on. They handed me the prescription anyway. Doi.

More chemo next Monday. Vacation at the beach next week. Hats and tons of sunscreen. We’ll measure progress on July 15 and discuss on July 16. I believe we’ll do more chemo after we discuss the progress.

I’ll leave you with another Yiddish word for nothing, courtesy of Dr. F. GORNISHT.

Photos

smack, smack,
Jan

PS. In case you are confused, yes, there really is another tumor in my lymph node next to my pancreas. It is much smaller and will be taken out when tami is removed. I didn’t forget, don’t worry.

Rash Decisions

2008-06-12T14:34:00.000-07:00

It was all going so well. I finished with my third round of chemo. I still had (and have) my hair. No heart explosions. Not an extreme amount of hurling. I was home free…then it happened. Monday morning a funny-looking rash appeared on my neck and chest. By midday, I had tiny blisters on the back of my hands and fingers. By evening, my ankles, legs and arms were overrun and it itched like hell. I woke up scratching the larger area around my neck and chest until I drew blood. Damn. I had to call a doctor and be the 1% freak again. I feel like a medical shitshow. But whom should I call? Who handles rashes at 3 a.m.? I emailed Dr. F. He didn’t know what it could be, but I was to let him know what I found out. I made an appointment with Dr. M. and, of course, I emailed Dr. BAH, just in case her oncological researchy (not real words) genius came in handy. She opened a spot for me with PAL (Physician-assistant L) at Texas Oncology.

Some of you may know this is the week prior to our company’s biggest event of the year. Not a good time for an itchy rash or an emergency trip to the rash doctor. My co-workers were glad (feel the sarcasm) to see me leave the office in the middle of the day during our busiest week. By the time I left my office I had a rash along my hairline and on the sides of my nose. Nice. Luckily, I still have freckles that made the red marks seem questionable and confusing at first glance. But the scratching gave it away. Folks are very uncomfortable with mysterious scratching and I noticed them taking a few steps back when I talked with them. So, in the end, I think they were secretly ready for me to leave the office. I saw some of them starting to scratch as I left. Sympathetic rashing.

I met with PAL. She was great and very funny. She slyly asked me random questions while she examined my arms and hairline. In one easy movement, she wheeled her chair toward the door, holding one hand to her ear while stating that she thought she heard Dr. BAH’s shoes coming down the hall. She keeps tabs on Dr. BAH by listening for her shoes. She wanted to pull her in as they liked to study rashes together. Enter Dr. BAH. “Hey, you still have your hair, that’s a good sign.” And then, all at once a flurry of examinations began…shirt, skirt and hair lifting happened to me with mutters, pokes and hmms from the medical team. When they finished, I sat my disheveled self back down. They both looked me squarely in the eye and Dr. BAH confirmed that I indeed had a rash and it looked uncomfortable. Neither had ever seen this side-effect from Xeloda. She said it wasn’t shingles and I confirmed no changes in soaps and no poison ivy on my couch, which is where my nauseas ass was all weekend watching AX Men and Ice Road Truckers. Exit Dr. BAH and her locator shoes. More questions and humor from PAL. Steriods, lotion and no primary source. Sounds familiar. And I’m still itching.

I left TX Oncology with a rash. Just a rash, diagnosed by the best. As I left I noticed a woman who was so weak from her treatment her husband had to wheel her in a chair. I said hi and smiled at another woman with her family. She looked terrified, hell they all looked terrified. I’m sure I did on my first trip too. I wanted to tell them the same thing the young lady with no hair said to me in the elevator on my first visit there. “Don’t worry. You are in the right place and it’s not nearly as scary as you think. They’re awesome here.” And she was right.

In the meantime, I’ll take my rash, and my thinning hair, right back to a job I can still go to every day where people like me and put up with my crabby, steroid, chemo ass and incessant scratching that makes my co-workers uncomfortable. I’ll take my rash any day.

kisses,
Jan

The Thing About Hugs

2008-06-03T10:18:00.000-07:00

Evidently I’ve never been a “hugger.” Just ask anyone I work with. Occasionally, during this cancer adventure, I update the managers I work with so we are prepared when I go away for surgery. We’ve worked on a “tami eviction” plan while I take a leave of absence. It is always during these conversations that one of the managers looks at me and says sweetly, “Jan, this is where I just want to give you a big hug,” and my reply is always, “No, no thank you, I don’t think so.” However, lately I’ve noticed something different about myself and the “huggers” in my life.

Sometimes hugs are just easier. If I haven’t seen a friend or family member in a long time and they aren’t quite sure what to say or ask in terms of the cancer, a hug just seems easier. We’re talking full-on, double-breasted bear hugs with sometimes a pat on the head (mine not theirs). There isn’t time for that one-shoulder, lean-in crap. It’s a hug full of “Hey, I been thinking about you,” or “Geez, I don’t know what the hell to say so this hug should say it all.” And that is okay by me. Oh, the hugs I get.

Everybody’s hugging. Doctors, family, friends, even people I’ve only know for a short while. One awesome pottery classmate, after hearing of my adventure, immediately popped around the art table and gave me a big one. It feels a bit like those people who touch a pregnant woman's bump. Sometimes they ask and sometimes they don’t. You just lean into it and it usually ends up meaning the world.

There is no need, if you are not comfortable, in asking about the Xeloda, the insignificant leakage in my mitro- and tricuspid valves, or my bowel movements. I have “people” who ask these questions…sometimes, much to my delight, in inappropriate places like baseball games or over dinner. So don’t you fret, a hug will do just fine. However, should you ever want to know about any of the other stuff, just let me know.

Evidently I’m now a hugger.

Why hugs Jan? Why write about hugs? I have nothing else this week. Day 9 of chemo and all is well.

Some Good News

2008-05-21T20:14:00.000-07:00

Greetings,

I'm just back today from my two day visit to MD Anderson. Sister Karen and Stephanie travelled with me from Austin. We met my cousins Lee Ann and Julie for a day of testing on Tuesday. I had a blood test, chest x-ray and a CT scan. Good times.

While I waited for my blood test I ran into Ms. T. and her daughter Suzette. I went to school with Suzette at HF ISD. I recognized Ms. T. because she was a bus driver at the school. She said she had been going to MD Anderson for ten years. She recognized me after I told her my name and because my name had been on her church's prayer list for a number of months. That small town stuff is working out for me.

As always, my favorite part is the CT scan. Not. Nurse Crazy, who is actually very nice, had to break the enema news to me again. I asked her if she was sure, positive, it was necessary and she patiently looked at me and said, "Yes, yes you are going to have one. " And, I did have one. It just seemed funnier this time.

After my tests, we headed to get a wheatgrass shot at a local juice bar around the university. We rested up and headed to the Houston Chicago baseball game. My cousin Lee Ann, got us tickets in her suite. It was great and the Astros won. It was a late night with an early wake up call for an appointment with Dr. F. on Wednesday.

He didn't keep up waiting long today. He asked his usual questions. I whined about the enema. Poo talk, etc. Next, he showed us the test results. I'd never seen a cross-section of myself. I actually avoid it as much as possible. He showed us the original scan next to the new scans and estimated tami lost about 2 cm. Nice work. Of course I gave the doc his props, but also credited the diet modifications and the addition of wheatgrass. He just smiled like I was a delusional idiot. I think he still thinks wheatgrass is something you smoke. Dr. F. is going to meet with the tumor team on Friday and propose our next actions which are two more rounds of Xeloda/Temodar. We'll remeasure sometime in July. After more reduction, a discussion will happen about the possibility of a portal vein embolization. This procedure would allow the blood flow to be redirected to the parts of my liver that will be left so that it will increase in size and strength.

It was a good visit. It was good news. Dr. F. is working with Dr. G. (cardiologist) on ways to fortify my heart and arteries for the next two rounds. I'll stock up on more wheatgrass. And away we go...

On another note: I understand the blogging is a bit cumbersome with the questions and the log ins. Hang in there and keep trying.

smack smack,

Jan

PS. Mikey, you were right. I did get some really great news about the “Full Force Gale” punch that I/we have put on tami. The signs were good. And I am certain the stress relieving methods you taught me at UT have helped me deal with this adventure. Thanks for the note and the positive energy. Safe travels.

A Quiet Update

2008-05-18T08:03:00.000-07:00

Greetings,
It has been a relatively quiet week from a health perspective. I had a cardiologist appointment this week and all my tests came back okay. Or at least it is all quite manageable. I will continue to go for regular check-ins and the current medicine plan for now.

I head to Houston on Tuesday for a day of tests at MD Anderson. Wednesday morning, I'll meet with Dr. F to see if his chemo cocktail has had any effect on the size of the tumor. We'll go from there in terms of any future medical planning. Sort of a fly-by-the-seat of Jan's pants type of approach, but it's all good for now. Mentally, I've decided to take the all out, full-blown, blind optimism approach to these tests. The type of approach that will leave me shocked and heartbroken if there isn't some shrinkage and I'm not taken immediately into surgery for tumor removal. So many times I over think things (imagine that), and allow tiny droplets of negativity to seep into my space. I decided to go with this approach to ensure that doesn't happen this time. Along with this ridiculously positive outlook and the boatload of wheatgrass I've consumed, I added a few extra prayers this morning for good measure. No pun intended. I'm going all out. Sister Sharon has warned me against this type of approach but I will not heed her warning.

I'm sure I'll have a fresh batch of photos and maybe an enema story or two? But just to be clear, no photos of enemas.

Thanks for all the great emails and good wishes.

smack,
Jan

Another Round

2008-05-06T12:38:00.000-07:00

Whew. Made it through another round of chemo. Next steps are to measure tami again to see if she’s lost some weight/mass. (If you will notice, I’ve decided not to even give her the benefit of an initial cap.) I’m hoping for the best, but preparing for more chemo if necessary. Maybe that elusive primary tumor will show up as well? I’m not including a date because just knowing there is a measurement and a potential barium enema in May is enough for me. Fortunately, there will be a baseball game in Houston to offset the drama.

This blog started off as a quick note, but after chemo, I was sure I needed to remind myself of a few things. Good things, that I don’t want to forget.

1) One sentence, delivered coolly by Dr. BAH to Sobotik was enough for her to quit drinking sodas for breakfast. “Hmm, that’s less than ideal.”
2) Wheatgrass.
3) Sixth row Van Morrison seats, although I think these were slightly related to tami tumor. Thanks again Mikey and Jane.
4) Finally, I was stone-cold sober on a night out with my best pals to see and remember Elise Chittick doing the running man dance in the parking lot of the Saxon Pub. There is no end to the benefits of being able to call upon that image when a light moment is needed.
5) I finally lost 30 pounds. Everyone said it would be so hard to lose weight in my forties.
6) Lesson learned: Pottery class should never be abandoned for chemo. There is always someone who wants what you think is crap and chemo is not a good enough reason not to enroll in another one of Janet’s classes. (I find it odd that this is another parallel between myself and Patrick Swayze.)
7) I’m very lucky to have such awesome people around me (and in email). People who would never imagine in a million years that I wouldn’t be able to kick tami’s ass. And for those that I suspect don’t feel that way (yet), it might be why I’m not returning your phone calls.
8) Nurse Brian’s method of describing poo. He said, “Sweetie if you’re not going to let me see it, you need to learn how to describe it. Now, was it like…” and so on and on and on for four days.
9) There are a zillion different kinds of cancer with people having vastly different experiences with the disease. Sometimes it actually does work to pray for the “not-so-bad” kind.

10) Tori's video below. She nabbed my flip camera after a weekend of camping and left this message on it for me. This was after I wouldn't let her sleep on my air mattress in the tent. "Because I'm older and I have a tumor" didn't seem relevant. She forgave me.

11) I sat in a Borders bookstore parking lot on a Tuesday night in January, quietly listening to an old friend. She asked to, and then proceeded to, pray with me over our cell phones. She didn’t pray for a cure or even a happy ending, just for me and my family to have the strength to handle it, whatever “IT” was going to be. (Thanks again, Walza) I was warmly reminded that, yes, this could easily be a Fannie Flagg novel. And that’s okay because Fannie is good people and no one should ever be too big for their Austin City Limit britches not to be grateful to be from a small town where you are included on every church prayer list and then some. As Fannie says, “Sometimes the best surprises come from small towns.”

Blog. Don't be afraid to blog. Blog me, or email me at JKIKER@austin.rr.com or Jan.Kiker@freescale.com

Have a great day!
Jan

A Short One

2008-04-25T13:26:00.000-07:00

Greetings,
It's been a slow week for Janni. I'm on day 5 of the Xeloda with little or none of the same hellacious side effects as before. Dr. G. prescribed a long acting nitroglyceride to prevent arterial spasms. It's been good times adjusting to that one daily. Dr. F. increased my dose of the Temodar chemo to give me a nice BIG BLAST for days 10-14 and suggested we measure the tumor sometime in May.

I've been chanting directly to Tami the tumor so she will shrink. It's only weird when people notice I'm chanting in public places. It makes them think I believe someone is "with" me. Which is not entirely wrong.

I'll give you a breather from the long-winded blogs from previous weeks. Please keep those emails coming. I can be reached at JKIKER@austin.rr.com.

A big shout out and THANKS to my friends wearing Jan's Sunday Punch tees on their Relay for Life walk tonight. THANK YOU, THANK YOU AND THANK YOU I say tearfully. The shirts are awesome. Thanks a bunch for the love, support and for being in my corner.

many kisses,
Jan

From the Beginning.

2008-04-16T11:57:00.001-07:00

I thought I would take this lull (or the quiet before the next chemo storm) to backtrack on the parts of this adventure you may not be familiar with…the part before the blog. I’ll be brief because the last two blogs have been very long-winded.

January 15: by the end of the day, I was unable to take a deep breath and had searing pains in my right shoulder. Karen takes me to the hospital for what we believe is either a gall bladder malfunction or a really bad anxiety attack. (Neither Karen nor myself has a degree in medicine) No waiting in the ER waiting room because of my heart rate, oxygen levels and blood pressure. Emergency room Dr. (fondly referred to in the first blog as Dr. Assh*le) noticed my liver was enlarged, but checked my gall bladder and looked for a blood clot as well. Mental note: After the CAT scan, I become freakishly concerned that they will find something…something scary. Heather, who has arrived with Steph for levity and general eye-balling, tells me to knock it off with the bad thoughts. I start my now frequent visualization technique of boxing away bad thoughts. I evidently relate to kicking something’s, anything’s, ass. ER doctor comes back after reviewing the test results. I am not having an attack of the gall bladder, nor a blood clot. At 3 a.m. and sleep-deprived, he delivers the following statement. “You have a really large tumor on your liver and it is most likely a malignant cancer.”

“Shit. Is this really happening?”

After being admitted into the hospital, a tiny doctor with great shoes, Dr. BAH, visits me to say it could be cancer or something else. She (hematology and oncology) needs a biopsy and time to figure it out. Three days in the hospital while she figures it out. Biopsy through the ribs. Blood transfusion. Anemia. 24-hour urine test. Endless daily descriptions of my poo. Excruciating, but comic relief for my family. Good meds. I fell – we all – fell in love with nurse Brian. Thursday, a change in psyche. I mentally decide no one is going to ask me to leave “the party” early. If they do, I don’t have to go. If they try to make me, I don’t have to go quietly. Friday evening, Dr. BAH tells us she believes, and she has confirmed this, that I have a carcinoid tumor on my liver. It is probably not the primary tumor. She describes every symptom I have been experiencing over the last 8-10 months. Symptoms that no one person or doctor put together as being carcinoid syndrome. “This is a carcinoid tumor, which is a slow-growing neuro-endocrine tumor (NET). If this were another type of malignant tumor in your liver we would be having a very different conversation.”

“Shit. This is really happening.”

I am released from the hospital and well-medicated, with the understanding we will be treating this cancer in an aggressive fashion. Dr. BAH continues to do further testing to determine where the primary tumor is located. Read: Colonoscopy. Endoscopy. CAT scan. X-ray. MRI. Result: No primary tumor. “It’s been there a very long time. Years.” After two weeks she sends me to Dr. A. (surgical oncologist at MD Anderson) for further testing and resection (medical term for removal) of the tumor. Resection is the best opportunity I have to increase my lifespan with this type of chronic cancer. It will increase my lifespan significantly. It is during the time between Texas Oncology and MD Anderson that I read a book called Crazy, Sexy, Cancer Tips. Oprah says to read it and watch the documentary, so I do. I also read Beating Cancer with Nutrition. I start juicing wheatgrass and tons of other veggies. Alternative diet strategies start immediately.

More testing at MD Anderson. Referred to medical oncologist, Dr. F., after Dr. A. determines the tumor is inoperable because of the size and location in relationship to a major vein. Sidenote: WE BELIEVE “INOPERABLE” TO BE A TEMPORARY STATE. WHEN (not IF) he is able to remove the tumor, it will leave me with 45-50% of my original liver. My brother Chuck is denied permission to watch the operation, in the operating room, unless he gives Dr. A. many steaks. I decide to become the designated driver for EVERYONE from that moment on.

Dr. F is tasked with shrinking the tumor so it can be removed. Blood tests. MRI. CAT scan. Surprise barium enema. “Finding the primary tumor is critical in determining the most successful chemo plan for shrinking this tumor.” More testing. If the primary tumor is not in my liver, it continues to hide. Dr. F prescribes an octreotide hormone called Sandostatin to control symptoms and the continued growth of the tumor. PET scan. Endoscopy. Still no primary tumor, but an additional, smaller tumor is located in my lymph node next to my pancreas. “Let’s try this direction and see how the tumor responds. I’ve never prescribed this course of treatment for anyone at MD Anderson, but it is currently being tested in several other studies. ” Xeloda, Temodar….

Now you are up-to-speed. Shot of wheatgrass anyone?

CAUTION. This blog contains POO-talk.

2008-04-09T20:13:00.000-07:00

It occurred to me as I was reflecting on the details of my last appointment, just how ridiculous some of the conversations we have in that exam room must sound. This latest visit reminded me a little of a police interrogation. One cop questions a suspect while another observes. Then the second cop comes in with questions to see if the suspect answers the questions the same way.

The question I inevitably get asked is: "How are your bowels moving?" (For the sake of my sanity, I am going to rename them "vowels" for this blog. I think it sounds nicer.) The first interrogator was Nurse Big Shot. She is Nurse Big Shot only because she is the one who delivers the big shot every 28 days. POW, right in the trunk. She is actually very awesome. I proceeded to go over the happenings in my vowel-world for the next 2-3 minutes. I answered as detailed as possible and then she asked even more probing questions about content and frequency. Enter Dr. F. After our usual niceties he jumped right into symptoms, pains and vowels as well. However, he had me clarify and describe more specific details and then had me go over it with him a second time. I have to wonder if he wanted to see if my story changed? During this visit, however, he had me clarify a third time. I remember looking at Sharon and saying, "am I making sense?" She tried to describe my vowel output to Dr. F as well. Occasionally Stephanie would chime in. I'm sure strictly for clarification or interpretive purposes because I damn sure know neither one of those boitches (with love) have seen my vowel output. After we finished with that subject matter, Dr. F. commented on how red my face and neck were and asked if I was experiencing the infamous flushing symptom that carcinoid patients have. I said I didn't think so and Sharon, God love her, reminded him he just spent the last 10 minutes grilling me on my poo. "Of course her neck and chest are red, hell, mine are red after that conversation." She's a great advocate.

I figured out later that Nurse Big Shot and Dr. F. each ask me the same questions and compare notes in his office before he comes back in with his final directives or to ask for further clarifications. They don't actually try to see if my vowel story changes. I've decided to keep a vowel notebook from now on. I do joke frequently about the interest these doctors have in my vowels, but it is an important part of the bigger exam. My vowel output tells them many things such as if the octreotide medication is the right dose or if I'm experiencing any colon/intestinal issues. Since they've never located the primary tumor, a certain vowel output for an extended period of time would indicate the need for further testing.

Overall, my visit to MD Anderson was productive and informative. Dr. F agreed he wouldn't try to give me a heart attack with his crazy drug combinations, and I promised not to have one.

Actually, there were some pretty strict rules established around my use of the Xeloda going forward. I'll have a 14-day rest and during that time will work with the cardiologist to "finesse" the drugs controlling my blood pressure, heart rate and coronary spasms. If Dr. G and Dr. F are in agreement and comfortable going forward we'll give it a second try around April 21. If any of the same issues come up, I'll stop taking it and try only the Temodar.

Enough medical talk. It was a beautiful day in Houston, sort of gray and cloudy, but beautiful none the less. The drive was great. Lots of bluebonnets and good conversation.

I'll update you on the next chemo round. If you have any questions or comments, please post them in the blog. It's really a good place for me to blab, but also a good place for a conversation.

Much love,
Jan

My Spastic Heart

2008-04-04T16:40:00.000-07:00

Here is a quick update after my wild ride blog. I actually stopped having the tightness in my chest after getting off of the accelerator drug Xeloda. After two days, DR. F. asked if I wanted to try it again and I said YES, of course! He insisted I see either my oncologist or general practitioner here in Austin to have a stress test immediately. It seems that less than 3% of people who take this drug experience something called coronary spasms, which would be the cause of my discomfort. Dr. M. took me immediately the next morning and had the nurse give me an EKG. And that’s when the trouble started….

“Now Jan, we probably don’t have anything to be concerned about but we need to get you over to the Austin Heart Hospital to run something more than just a stress test. There is something irregular showing up on your EKG and we need to see what it is. It very well could be from the Xeloda, but let’s just check it out.” said Dr. M very calmly. A few hours later I’m sitting in a cardiologists office (now my cardiologist, Dr. G) listening to him explain to me that a stress test might give him the details he needs to figure out what is happening, but what would be more effective is to do an angiogram on me right away. This afternoon. The only familiarity I had up until this point with angiograms was that both my parents had one minutes before they were wheeled into emergency bypass surgeries. It also occurred to me about this time that the last time someone wanted to do a test on me to uncover details, I was wheeled out of an emergency room with cancer. The panic started. “It is a simple procedure and we’ll be able to determine what has happened to cause the irregular EKG. It could be a blockage or some sort of spasm as a result of the Xeloda or you may have had a small heart attack.” Full-blown panic gets bigger at the suggestion that I may have had a small heart attack. A heart attack out in my garden, my sanctuary of peace, on a Sunday afternoon? Sister? Karen, is this really coming out of his mouth? At this point my blood pressure and stress levels are so high, sister Karen has to go and ask for a sedative for me.

We wait patiently in an office until they can find an open bed for me at 3:15 in the afternoon. When one was located I was immediately wheeled in the room where multiple nurses were waiting to get me ready for this procedure while the angiogram team waited in the hallway ready to whisk me away. They had to get started by 4:00 or they needed to wait until tomorrow. Nurse Bossybutsweet started on me first. She had me strip down al fresco while Nurse Franticy had me sign many documents as she was getting my paperwork taken care of before I was whisked away. Nurse Bossybutsweet said, “okay honey take everything off and lets get you hooked up.” She then proceeded to stick multiple electrical contacts all over my body from toe to neck. She was moving things around and sticking those things here and you know, there. It felt sort of women’s prison-ish, but I tried to get past that. She then had me sit down while she took my vitals. She took one look at my blood pressure and said in a loud booming voice, “NOW LISTEN HERE LITTLE GIRL, YOU NEED TO CALM YOURSELF DOWN—this pressure and heart rate are way too high.” And she could say that because she was incontrol and I was obviously not. I said, yes ma’am very quietly and had a brief meltdown, which she indulged me. Then off we went to the procedure room. I was pumped full of drugs and still didn’t fall asleep.

I’ll spare you the details of having to stay awake, nekkid and “prepped” in front of a room full (3) of people, but there are details. A catheter was used in my femoral artery (aka groin) to deliver the contrast agent to my heart for the x-ray images.

The final result was a test that went really well and I wasn’t whisked away for a quadruple bypass after all. They found three arteries with blockage and surmised that this blockage along with the arterial spasm was causing my discomfort. I may need a stent in at least one of those arteries one day, but not today. Let’s work on the cancer first team. Ta-da, a new drug for Jan to take care of my blood pressure, coronary spasms and a rapid heartbeat—a threefer. And a new blog about my spastic heart, which is also an excellent 80s punk band name should we ever travel back in time to do that.

I’m still on my chemo and quite nauseous and hurling frequently, but I feel better that my heart won’t explode while I try these crazy combination drugs Dr. F wants to use to shrink the tumor.

That’s all for now. But, that’s enough now isn’t it?

One final note, those folks at the Austin Heart Hospital were great. They tried the best they could to give my panic comfort and ease. They tried. God love em.

Kiss, kiss, smack,
Jan K

A Wild Ride

2008-04-01T19:58:00.000-07:00

So far, this cancer adventure has been quite similar to another adventure I had growing up. I was a barrel racer as a youngster and I rode a yellow quarter horse named Pretty Boy. He had a gorgeous long blond mane and tale. He could run like the wind and take a corner like nobody's business. He was as unpredictable as he was beautiful. Pretty Boy was a charmer who would entice me to ride him, because it looked like fun, then run like hell with me holding on for dear life. I didn't even have to kick him to move, I just leaned forward and he took me where he wanted to go while I hoped for the best. Was he going to scrape me off on the fence or knock me off with a low hanging branch if I couldn't stop him? My Dad would have the arena gate shut after the start of our race because we were never sure I'd be able to stop him when the ride was over. It was the closest thing to flying without a net I've ever experienced, until now. Specifically, the constant motion, change in directions and unpredictability of cancer and the medicines used to treat it.

This week was my first week on chemo. While taking the first accelerator drug, Xeloda, I started experiencing chest pains that traveled into my throat. It seems it might be okay to experience the known side effects such as nausea and vomiting, but you apparently shouldn't start experiencing different ones. Dr. F took me off the drug Sunday night. I still need to take the actual chemo drug, Temodar, starting today for five days. I'm supposed to discuss further with Dr. F. next Wednesday. I was really hoping for an easy ride. A quick one that got me from point A to B without being scraped off, but it seems to be as unpredictable as my rides on Pretty Boy. So, I've decided to sit lower in the saddle, keep my chin down and focus on enjoying the ride no matter how scary or exciting it gets. Dr. BAH reminded me last night not to worry about being taken off the Xeloda. I don't get extra points for toxicity so having as little as possible is better and that the Sandostatin (hormone treatment) is also doing the job. And yes, I'm still hitting at least 2-4 oz. of fresh wheatgrass juice daily which has to be doing something.

You may have noticed I've added links to a page of photos and several sites that might be helpful if you aren't familiar with this type of cancer. Thanks for indulging my analogies. I'll write again next week after my trip to MD Anderson.

smack, smack, kiss,
Jan

PSYCH

2008-03-21T07:41:00.000-07:00

I got a big PSYCH when I went back to MD Anderson last week to meet with Dr. F. (medical oncologist). There was not wholesale agreement with the “tumor team” about the portal vein embolization. If I had proceeded in that direction it would have made me ineligible for two studies and kept me from surgery for six months to a year. Instead, I am starting a chemotherapy plan Monday. Dr A. (surgeon and member of the tumor team) still feels confident he only needs the tumor to shrink a small amount and he can remove it surgically (resect).

The chemo plan consists of taking Xeloda and Temozolomide in pill form. I’m on a plan that lasts approximately 15 days, then I take two weeks off. I’ll continue this for two or more rounds depending on my reaction to the drugs.

I think this is an unusual course of action, but we are going to give it a try. Dr. F. used these two drugs together in 2005 when he conducted a study at Columbia. The tumor team agrees with this direction as well.

Hopefully all will go well with this chemo, if not we’ll try something else. Dr. F. was sure it wouldn’t make the tumor bigger.

In other news, I believe we’ve cooled it on the testing for now. Still no sign of a primary tumor. My last test was a week ago Thursday. I participated in a small bowel function test. I thought long and hard before mentioning this test because I was afraid to put the word “bowel” in my blog and because it immediately conjures up images of a small team of judges in white coats with scorecards ready to rate my latest “deposit”. Not so. It was actually a test where they photographed barium as it traveled through my intestines and colon. Nice and somewhat aerobic.

I'll keep you posted on any new developments and how the chemo is coming along. I thank you for your kind thoughts and well wishes.

Jan K

Jan vs Tami Round One

2008-03-11T12:26:00.000-07:00

Greetings,
At last Dr. F. has made a recommendation. It seems, after consulting with the tumor team, the best first course of action to try to shrink this tumor (nicknamed tami) will be a portal vein embolization. He's built in some additional options depending on the tumors response. If it actually grows because of this treatment, I'll be switched to a plan of chemo used in one of the current drug trials. If it shrinks, another PVE may be necessary before Dr. A. is able to resect the liver and tumor.

Portal vein embolization is used to cause the atrophy or shrinking of a part of the liver and the hypertrophy or extra growth of the remaining liver. Dr. F. warned me it is an unpleasant and painful procedure, but I'm not sure he's actually experienced one himself. I decided to stay in denial about that part of the conversation for many reasons. If I know something is going to be painful won't it be really painful and won't I fret and worry about it? YES. Can this "pain" he speaks of be worse than when emergency room Dr. Assh*le decided to press down on my liver and diaphragm to see if they would "spring" back which was followed by the only shrieking scream I can remember producing in the last 30 years? Besides, they have a really cool chart for pain in hospitals and when you rate yourself they bring you stuff. In my head the pain cannot be an issue, it just has to happen. I can already hear Beverly and Sobotik chanting "stay ahead of the pain Janni, stay ahead of the pain".

This procedure will require a few days stay at MDA in the lovely H-town. I'll keep you updated on a date, but I expect it will be within the next few days.

Thanks for all the inquiries and support you've shown for my family and me during this time. I feel like this is the first step in really starting the fight process, but we really started the day after that emergency room visit. I greatly appreciate the prayers, kind notes and emails. We (it may take the entire “village”) will kick this tumor's ass.