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