oh shizzle.

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

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.

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

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

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

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

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