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