My New Year

I just gave myself my first shot of Lovenox on my own. They had wanted me to come in to observe my technique, but I feel like crap. I wasn’t going to drive feeling the way I do. Do not mix cancer and colds; you won’t like the way you feel. Even Ben commented on my increased cough.

I explained to them that my daughter was a Type 1 diabetic so I had to give her just a few shots over the years. More so earlier than later; they started training her right away at the ripe old age of four to take care of her condition. Would that we could do that with all kids, teach them to take care of themselves. It would be a far, far, better world. I’m posting a picture of her being trained by a nurse to give a doll an injection that appeared in the local paper at the time.

Anyway, they let me stay at home and shoot up by myself.

If you read very many blogs you will notice that they sometimes post the music that they happen to be listening to as they put their words to electrons. I’m going to do that too.

I had to fire up the VCR—remember those—to watch a video about Lovenox and how to give myself a shot. I have very few tapes left; they’ve all been replaced by DVDs. But I had a copy of a television show, Austin City Limits, that I absolutely love. I’ve titled the tape My Girls. Egotistical of me, I know. It’s an Austin City Limits Songwriters Special, originally aired in 1986, over 20 years ago! It features Gail Davies, Roseanne Cash, Emmylou Harris, Lacy J. Dalton, in addition to Mary Anne Kennedy and Pam Rose. An awesome 60 minutes of female writers and vocalists. It’s brought tears to my eyes several times; Roseanne’s My Old Man, almost anything Gail Davies does, Emmylou…. Heck, they’re all good!

I ran out to PBS.org to see if I could find a DVD of the show. Apparently they don’t do that anymore. But I did find out that the two writers Mary Anne Kennedy and Pam Rose had formed a group called Kennedy Rose (not to be confused with Rose Kennedy) and put out a couple albums.

I did happen to find a video of Gail Davies doing her Grandma’s Song from the special while listening to her sing it on my tape! Wanna talk about coincidence? The story behind Gail’s song? Her grandmother, Francis Witten, taught her the song she starts out with, an old folk tune. She then segues into her tribute song about her grandmother. NEAT!

Gail Davies happens to be one of those Christians whose views are reflected in her music, like her song Never Cross That Line. Well worth listening to. Songs that teach values; interesting concept.

It’s time to take wash out of the drier, put more in the washer, and to fix supper. If I can get one shot, two meals, and three loads of wash done today, I’ll consider today a success. The dishes will have to wait.

And as always, remember that "As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Correcting my father ;-):

- They aren't roses, and they're dots SOOO tiny, you have to point them out for them to be visible. They're barely tattoos ;-)!!

- There are tons of folks older than you! I know you may not feel that way right now, which I totally understand, but you're not that old ;-). That's partly why this situation is understandably so hard to deal with.

- To help explain the stats you quoted a bit.... Docs talk in terms of "five year survival rates." They rarely tell people things like "you have ___ years to live," 'cause that was never accurate anyway. So, the surgeon had said that, WITHOUT surgery, there is a 10% chance you'll be alive in 5 years. WITH surgery, there's a 30% chance you'll be alive in 5 years. The next day, your Oncologist clarified those numbers by saying that, because your cancer had metastasized, those rates ARE worse for you. Now, neither one really specified what role the 6 weeks of radiation will play in those numbers.

- Sorry for the brutal honesty, its even hard to write it, but that's what that all means. I admit, even though I KNOW all this stuff intellectually, those stats were the hardest part for me to hear, as a daughter. That, and the fact that the docs insisted on using the word "palliative" instead of "cure" because you are "Stage 4 w/ Metastasis." They will never use the word "cure" for someone Stage 4 or higher, only "remission" if they are completely successful.

- Now, all that being said, the surgeon was the ONLY one who seemed really motivated to get Dad on the table and cut him open. All other docs have said that the surgery is extremely invasive, would not prevent cancer from coming back elsewhere, especially in the lymph nodes where it has already been detected, and would be "life-altering." The purpose of it would be to alleviate symptoms the tumor is causing and to extend Dad's healthy comfortable years. So, the docs, as well as Dad, have expressed the desire to save surgery for an absolute last resort. On a positive note, the surgeon was clear that Dad would NOT be an invalid or incapacitated after the surgery, but his relationship with food and eating would be forever changed. Not too fun.

- So, sorry for being a downer, but having witnessed the Dad-doctor conversations en masse lately, I wanted to catch everyone else up to speed a bit. As hard as it is, its important to be realistic about it all. Now, all that being said, there are no NEW side effects with radiation, so that therapy won't be any WORSE than the chemo so far. Plus, Dad is taking his IP-6 and reports feeling a bit better. There are other "alternative" therapies that may be available. AND, statistics are, by definition, general. There are always those at the extreme ends of the spectrum that defy all odds, anyway ;-).

Sorry I didn't post any of this sooner. It takes a while to process it all. Plus, we were pretty busy when I was up there.

xoxox,

Amy

About Me

OK, things have been hectic in a nice way lately. Today was the first day I got to drive myself in about three weeks. Not that I was always able to drive myself, but it was nice to let someone else drive for a change.

I started Chemo on the 19th and Amy got to share that with me. They pulled the pump Christmas Eve Day; the same day that my sister and her husband showed up. It was certainly was nice to see them again. And they loved the dogs.

I was already set up with a series of consultations, so I was at ABMC every day last week but Christmas Day. Monday I had my pump removed. Wednesday I had a surgical consult. Now, you may think I’m complaining again when I say I got there and they didn’t have a record of my appointment. Well, I guess I am. But I’ve come to expect that from Aurora.

The surgeon was a cardio/thoracic surgeon; as opposed to the “general” surgeon I had seen way back in the beginning. It seems that they work as a team doing surgeries of my type. So it was nice to hear his side of the story.

It seems that for people with my level of esophageal cancer the prognosis isn’t very good. Ten percent for a Grade 4 B patient. Surgery can increase my chances to 30%, according to the doc.

It was nice to have my daughter, Amy, and my sister and brother-in-law there to hear some of this from the horse’s mouth, so to speak. They got to ask questions and satisfy their own curiosity.

Interesting note: Several days later, Amy and I were having lunch with Amy’s friend and her husband at a local Mexican restaurant, when we noticed the surgical doc sitting across the room. We traded waves. Later he came over and said Hi and mentioned that he was from San Antonio so he needed Mexican food often. Seems like a real nice guy.

Thursday, I had my ten-day consult with the oncologist at eight days. He was more of the opinion that surgery may not be necessary with a course of radiation and different chemotherapy. He was going to wait for input from the other docs, but was ‘quarterbacking’ the whole treatment and that was his thoughts. So, it looks like I’ll be doing at least one more course of chemo, but with different drugs. It seems that the body adapts and reacts to the drugs after a while. I complained that I still hadn't received my scans yet and he said that he would see that I got them. Hmmmm, oh, not yet.

Friday I had a Radiation oncology consult. It looks like I will be undergoing six weeks of radiation therapy, if you haven’t figured that out from my schedule. I now have four tattoos! They are very tiny roses, two on my lower chest and upper abdomen and one on each side. These are the targets for the radiation beam so it passes through where they want it to go without hitting anything important. At the same time, four different beams hits the tumors with all the energy, but divides it up for the different paths so they only get ¼ the energy.

And, as I said, this doctor also said that surgery might not be necessary for me after they’ve had their shot at me. I’m waiting to see.

While we were there, I heard the receptionist talking to, I assume, Medical Records to get my name changed in the computer. It must have worked; I'm back to being H.

That was last week. Amy left Tuesday morning so that threw me into a great big spiraling depression. OK, maybe not that bad, but I was sad to see her go. Before she left though--it must have been Sunday night--I was undressing in my room in front of the mirror. Being almost directly under the light, I noticed that I saw the shadow of the bulge of the port. But halfway between the port and the AC joint—that bulge on the upper point of the shoulder—there was another larger bulge. Feeling it, it felt soft, just some swelling. I called the kids to witness and verify my observations. Amy—or was it Ben?—noticed that I had another “bulge” above the collarbone. I thought it curious, but didn’t worry too much about it. I asked a couple of people about it, one a nurse, and nobody gave me any cause to worry.

So, I didn’t think about it at all on Monday. Today, however, while I was changing, I noticed the upper bulge was larger. I thought it was the beginning of a goiter! So I called the VLCC and got an appointment.

I take that back. I asked if they wanted me there at any particular time. They said just come in and they would take care of me. So, I got there about 1:30PM. They didn’t get around to me until 2:30PM or slightly after. They took me in, got some history, looked at my chest and decided an ultrasound exam was in order.

I knew something was up when the technician got up during the exam to go consult with someone. It was later confirmed when she left and brought back two more technicians to check her work. It was finally cast in stone when she told me that I had a small clot in a peripheral artery that was causing the problem.

I went back downstairs to the VLCC to await their input. It seems I will be getting blood thinners: Lovenox shots to the stomach, and Coumadin pills. At first, reading the box, I thought the Lovenox was “Love NOX (otherwise known as Nitrous Oxide).” Isn't NOX the same as "laughing gas?" And. you should be interested to find from where (whence) they derive get the drug. Gross!! And if you look up the Coumadin, you’ll find it’s a rat poison! Really! Would I lie?

BTW, my friend in the hospital over deer season for a blood clot was getting shots to the stomach. I’m curious to know if it was the same stuff.

So, I’ll be giving myself the shots until the blood levels of the blood thinners are up to the proper levels to take care of my clot. Since my daughter is a Type 1 diabetic, I’m no stranger to giving shots. But it’s a little different when you have to give them to yourself. Nurse Margaret—did I mention that I like her professional manner and her empathy?—trained me on giving myself the shot. It’s somewhat different than normal shots because there is an air bubble that they actually want me to inject to block the escape of the drug. Other than that, it’s pretty much straightforward. So, I gave the shot and she said that I did just great. Go figure.

I may try to train Ben to give his old man the shot, too. If things don’t go well, he may need to give me other shots someday. And since Himmy is diabetic, he already gives his cat shots. Can I be any worse? Don't answer that!

The nurses had asked if I was having any pain, specifically in the right arm. I haven’t had that yet. But, as I type this, I am developing a pain in the muscle of the shoulder just up from the soft bulges. I’ll keep an eye on it.

So, that’s the deal for now. If you have any questions, if I haven’t explained everything in an intelligible manner, just let me know. Or Amy can correct me! It’s not as if that hasn’t happened before, that my kids correct me. Sometimes I need it. :-D

Amy Watch 2

“Age does not diminish the extreme disappointment of having a scoop of ice cream fall from the cone.” -Jim Fiebig

The same goes for watching your child, adult as they are, leaving with their “kids” to return to their home far, far, away after staying for almost three weeks. Now I’m depressed.

It was fun having Amy and her “monsters” here, even though I didn’t always feel up to it; I had both kids and their pets with me. It reminded me of happy times when the kids were young. It was the best Christmas present they could have given me followed closely by the big heavy blue bathrobe that withstands even winter’s chill when out letting the “monsters” take care of business before getting into the van for the return trip.

Amy left this morning at 8:00AM to return home. To keep folks apprised about her progress, I’ll do the same with this post that I did for her trip up.

I have this post set for Jan 10, so it will stay under my "sticky" schedule when I add other posts this week since I will be bored with little to do when Ben goes to work!

1/1/08
08:00AM -Amy left! :-(
10:10AM -Crossing over into Illinois! The dogs are "moping and whining."
12:05PM -Passing Kankakee where the kids were born. She's now driving in snow and will have snow down past Effingham. She sends me text messages and asks for mileage and weather reports! I look things up on the Internet and text her answers back. Ain't technology wunnerful?
03:15PM -Passing Effingham, IL. Still snowing.
04:28PM -Sunshine!!!!
06:00PM -Past Paducah, KY. Looking to stop the night in Franklin just south of Nashville.
07:17PM -She made Tennessee!
08:15PM -She just got to the hotel in Franklin. She's beat after12 hours and the dogs are rarin' to go! Hopefully she'll get them calmed down for the night. Anticipating an early start in the AM.

Sweet dreams, all!

1/2/08
08:45AM -Got a text message that says she's in Georgia. Four hours to cross GA and another three to get to Tampa and she's home. I asked when she left, 'cause I was waiting for her text message to wake me up early. She said she left at daybreak, which for Franklin was around 6:58 this AM. Allowing for the time change, that would have been about 6:00AM my time. So, see you back here about 1:00PM!
03:13PM -Just got into Florida. I didn't find out why she took so long. Probably stopped for lunch and to potty the monsters.
05:56PM -Our time, Amy just got home!

Sorry I didn't keep this up-to-date in real time. Had some fun here with the doctors. It seems I have a blood clot. But now that I've given the spoiler, I'll update you in another post.

But Amy is home safe and sound.