How to Squeeze a Tumor.

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

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

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

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

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

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

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

smack, smack,
jan

PS. Rest now Kristy. You will be missed.

Hot D@mn...

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

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

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

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

smack, 

jan aka Crabby-Spice

Lean Into It.

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

Still no signs of a primary tumor.

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

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

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

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

smack, 

jan

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

Unexpected Inspirations

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

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

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

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

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

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

kisses, jan

Happy New Year

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