Sleepers

I see more sleepers on my trips to MDA than anything else. There seem to be two types of sleepers here. Family or friends of someone with cancer. This is their time to take a break and rest. I know Dad uses his time here wisely by grabbing a nap when he can. The other type of sleeper is the actual cancer patient that's been so medicated, they can't hold their eyes open. The sleepers aren't noticeable anymore, they just kind of blend into the furnishings. I can't see them sleeping nor can I hear them snoring. And I'm certain none of them notice when I snore.

I was waiting to go into my chemo appointment and was sitting across from a woman who was clearly in a fistfight with larynx or esophagial cancer. My clues were the large, angry horizontal scar where her neck meets her chest and her raspy voice. She looked pooped. Radiation battle weary, but a real beauty. She was a tiny, friendly woman who loved to talk, watch One Life to Live, and at the time was either loving or hating her sleep. She drifted off and began to talk in her sleep. She reached for something while she slept. She kept reaching, stretching and reaching until she almost tumbled from her chair. She was reaching for something the rest of us couldn't see. She kept reaching for it as far as she could until she woke herself up. She laughed and started talking more about Dorian Lord, then fell right back to sleep again. I hope she eventually touches whatever it is she's reaching for.

My cousin Janet and Dad accompanied me to this appointment. It was a quick day trip for blood tests, Dr. appointment and Avastin. I warned them both ahead of time it would be a gritty, full of gnarly graphic details appointment. "Not for the faint of heart. Hit the door if it's too much for you", I said. I'll spare you the details, but it did require me rehashing my story four times for four different members of my "dream team". Then again later to Jules who couldn't be there and Becca, Janet's sister, who is an LVN. I'm not sure I've seen my Dad laugh that hard in years, not to mention Janet. I'm certain they weren't laughing at my expense, but at the reactions, questions and suggested solutions for my discomfort. The fifteen minutes we spent laughing hysterically until we all realized we were crying was worth it. 

We had a great Kiker Family Reunion this weekend as well. Good times catching up, but once again, too short. Thanks for hanging out with us for the day Janet. I'm glad to know you'd do it again. 

smak, jab,

jan

Take My Urine, Please.....

On Thursday, I spent  24-hours gathering urine for a super special MD Anderson test. I believe my doctor orders a 24-hour urine collection for a hormone test (5-HIAA) in order to determine what tumor markers my body is giving off within a 24-hour period. I gather this in a big orange jug that I keep on ice until its ready to turn into the lab. When I arrived at MDA on Thursday morning, there were no orders for the test. So no one would actually take the jug with my pee in it. I had to ask nicely for a nurse to take it and hold it until the orders were written with the strict understanding my pee would be discarded if no one (DR.) claimed it by the end of the day.

I easily recognized the humor and irony in this situation. I couldn't give my pee away, damnit. I  spent 24 hours gathering this stuff and 2 hours trying to find someone to take my big ass jug-o-pee.....sheesh.

I usually carry my big jug in a large bag with handles. I just do. I don't feel comfortable toodling around MDA with a huge orange jug. EVERYONE knows what's in the jug. It's gross, but it's part of the deal. The first bag I was carrying it in actually ripped and the jug dropped about 4 inches to the floor in a very crowded blood draw room. I could hear 20 people (okay, maybe only 8) gasp in unison. All eyes were on me and my jug-o-pee. I started giggling, while my favorite phlebotomist, Mercedes, howled with laughter. I actually got applause from the crowd for not spilling my pee.

Great news today. We measured the tumor with a the usual chest x-rays, blood and urine tests and a CT scan. No change in size for the largest tumor (tami), but the smaller satellite tumor that is connected to her did shrink. This means the weaker cancer cells (or low-hanging fruit) have been eliminated. Now we have to keep pounding away at the tumor with more of the Avastin and Rad001. I thought, as did Dr. F, this was great news. Now, you might be saying to yourself "What the hell Jan? A satellite tumor? I didn't know about anymore tumors..."

Explanation: I have one really large tumor on my liver fondly known as tami tumor. Another, much smaller tumor is located on another part of my liver, but is connected to tami. I call this a satellite tumor. A third tumor is located in a lymph node next to my pancreas. The two smaller tumors are irrelevant unless we get tami under control. We remove tami and the smaller ones are removed as well. We control tami and we control them all. It's all good. Believe me, it's great news.

Sister Sharon went with me this time. She did a good job helping to quell my nerves during the prep time for the CT scan and offered the appropriate amount of empathy after the test and again throughout the evening while I dealt with the indignities of iodine and barium. It was cousin Julie's first time to miss a CT scan. However, she called regularly to make sure Sharon handled things appropriately. Thanks for the massive amount of support. Onward with the study.

smak, pow,

jan

Spinning Around

Friday marked the end of my 10th cycle on the Avastin/Rad001 study. Time flies. Dr. F. gave me a nice big dose of antibiotics for what may be an upper respiratory infection. The combination of Avastin, antibiotics and my "nerve" pill created an experience similar to what I would imagine it would be like floating on rough seas. The kind of dizzy/nauseous that happens to those who drink too much and must sleep with their foot on the floor to quit spinning. A feeling I seem to recall from my college days.

I hadn't been feeling well for about a week and at last, an upper respiratory infection arose from within. I was thankful it wasn't some new side-effect. I'll feel better in a few days. My blood/urine tests were good otherwise and it was a relatively quick trip to MD Anderson.

I saw the coolest shirt in the Leukemia area on Friday morning. I sometimes have to go there for my blood tests. It's like walking into a party where everyone already knows each other, but could always use another guest. Most of the patients are there daily so there is a sense of community. Not for the faint of heart since the treatments for Leukemia are very aggressive and toxic. A young woman with no hair and a mask was wearing a shirt that said "Jesus Loves You, But I'm His Favorite." She saw me reading it and gave me a big smile behind the mask. She knew. She was very confident.

Karen and Greta went with me to my appointments and hung out with me for the day. We had a great time. I really appreciate the great friends and family who go with me and generally keep me company at the hospital. You know how the old saying goes, "it's not where your fishing but who you're fishing with..."

My next visit is in mid June. Praying for some shrinkage. Anything will do.

smak, pow,

jan

PS. Bill Askins passed away last week after being diagnosed with an aggressive malignant brain tumor in 2007. I heard some truly inspiring stories about Bill's life, his family and his ferociously courageous battle against cancer. My favorite Bill quote and one I have written in many places to remind me constantly is "peace is the absence of fear." My heart and prayers go out to his family for their continued strength.

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