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

That #@%* Question

I spent this last weekend in Fannett, Texas with my family. It was our yearly Kiker Family Reunion and my first chance to see many of my cousins, aunts and uncles since my diagnosis. I played in the family golf tourney on Saturday. I couldn’t quite make 18 holes because of the treacherous Southeast Texas humidified heat. I also find the alligator warning signs that are posted on the course disturbing. Not to mention, the actual alligator swimming in the water around the fifth hole.

My cousin Martha had a particularly hard question for me. One that my sisters, Dad, and cousins make many little references or jokes about on our visits to MD Anderson, but never actually discuss.

It was a simple enough question. She had just one more after the questions she had asked the day before. “I mean, how are you dealing with all this? It has got to be hard without your Mom being here or just being able to talk to her. Wouldn’t it be better with her here just to talk to or do you think, thank goodness she was spared all this”….?

Damn. I hate that question.

This is a tough one, and a question I’m seldom able to choke out an answer for. Our Things to Invent List, that Julie and I started on my first visit to MD Anderson, not only includes inventing a better tasting Barium, an enema-less CT scan, and a color poop chart/wheel for really defining color and shape for your medical team. It also includes trying to come up with something, some sort of Heavenberry device to call Mom. Not every day, just occasionally. Sharon could use it when she needs advice on raising the boys. Do I wish my Mom were here? EVERY SINGLE DAY. Do I wish my Mom were here to go through this? It’s such a tricky question and I still don’t have an answer for it. Ultimately, I think I am thankful she doesn’t have to go through any of this. Maybe the ones who are here, are exactly the ones who are supposed to be here with me. Martha, give me some time with that question. I’m certain it’s something I’ll need to work through with a professional.

The time I spent visiting with my family was great. It made me realize I’m not going through any of this alone. It really is a village. This crazy adventure is happening to all of us and hitting pretty close to home for some who love me. I have a ton of support in many places. Aunt Dorothy reminded me the Methodists are still praying for me. Thank you again for that.

As for tomorrow, I still have my shrinkage number in my head. I feel good about it. I’ve also decided to pretend like I’ve never heard of having an enema with a CT scan in my life. I’ll act totally surprised and indignant, as though I have no idea what the nurse could possibly be suggesting. I’ll say “seriously, I’ve never had one of “those” before and this is my third scan.” It doesn’t take much in the way of silly diversions to make it a bit easier. It will also be Julie’s first time back in the “staging area” before the scan, which should also provide plenty of comic relief.

For my family and friends, who really do believe I will have no problem getting through this “blip in my life”, thank you. Thank you from the bottom of my heart. Your confidence gives me strength.

Photos

smack, smack,
Jan

PS. My niece Haley, who teaches fire safety, suggested I try a stop, drop and roll move to avoid all enema situations.

Finally, an Update.

It’s been awhile since the last update, but oddly enough, you haven’t missed much. There was a trip to Crystal Beach with my family. I had two days of quiet before my sisters, nephews and niece arrived. I’m afraid at this point I’m used to the noise so it was a welcome relief when “the boys” and Tori arrived with fishing poles in hand. The highlights: many naps, crossword puzzles, 2008 Crystal Beach Phase 10 Championship (I came in third), fishing with Ben, D’Lisa’s funniest joke of 2008, a trip to Galveston with Beverly, absolutely no sunburn since no one would let me out in the sun, and a barbeque with the whole family.

Sure, there are more stories, like Sam (4) actually trying a wheatgrass shot and abruptly spitting it back out in my hand while choking out the words “ Awww gross Aunt Jan.” There was also another dubious incident in the bathroom, but all I could hear was Sharon putting everyone in timeout while she tried to figure out exactly what had been put into the toilet. Good, good, times. You can’t find that kind of fun in any luxury beach resort.

I started my 14-day chemo on the first week of the beach with little or no problem walking, exercising, napping etc. I had a couple of lengthy bouts with chest pains toward the end of the week, so I was taken off of the Xeloda until the cardiologist could advise. His team tweaked my drugs a bit and I was back on the Xeloda by Tuesday with no issues. Dr. BAH’s office gave me magical no vomit pills for my five days on the Temodar and they were very helpful. No heavering so far.

In general, all is well. I go to MD Anderson July 15-16 for more measuring. Again, I’m taking a fiercely optimistic approach and packing my robe and slippers, just in case. I have a number in my mind. I say it several times a day. The number is larger than 2cm, but smaller than 5cm. We’ll see.

“But how’s your head Jan? How are you handling this?” Those are questions I get quite frequently. I flounder between trying to grasp for some sense of normalcy versus being reminded regularly that I do have cancer, and that for 14 days of the month I struggle with the meds and my focus, concentration and being overwhelmed. However, I know I’m in good hands and the chemo is working. It’s actually shrinking the tumor.

Thanks for being patient with the updates and for all the support here in Austin, Houston, Fannett, and other cool places. I get lots of email and cards. Thanks and keep them coming.

Photos

smack,
Jan