Happy New Year

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....

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....

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

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)

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:

1. The largest wave from hurricane Ike would sweep tami out-to-sea along with Dr. Ben's beach cabin.
2. 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.
   
3. 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.)
4. 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.
5. 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.
6. 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.
7. 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.
8. 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.
9. 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.
10. 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

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

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....

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

C-Card Etiquette

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

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.

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.

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.

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

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.

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

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

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

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

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

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

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

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.

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.

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

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

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

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

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.