Tuesday, January 20, 2009

Wearing the steel toed boots!

Hello dear ones,

Today was day 4 of chemo and day 1 of radiation and I'm still wearing the steel toed boots to kick a little cancer....well, you know my line on that :-) So far so good, with no side effects and I still have good energy. Today, Rena (one of my chemo nurses) told me I was the perkiest chemo patient she's ever had....I like that!

It's hard to believe that just a week ago I was in the classroom with the kids. I feel like I've entered a whole new world - one that is populated, thankfully, by wonderful caring nurses and good doctors and some darn incredible technology. I feel like I could be an extra on "E.R." with all the lingo I've learned recently. Dang, too bad George Clooney isn't still on the show, I'd sign up in a minute! Last Wednesday I had surgery to put in the chemo-port....I can't explain it too well, but it is a small mechanism that lies under the skin right below my left collar bone. If I press on the area, I can feel it there and now that the surgical site has healed, it's not painful anymore. Accessing it with the needle the first time last Friday was another "special moment" (can you say half gallon of Rocky Road ice cream as a reward? :) but it's ok now. This is where the IV line for the chemo is literally plugged into my chest - it goes to a line that feeds from the port to the vein by my heart that carries the chemo through the body to the tumors/lymph nodes. Truly amazing technology....it reminds me of the little transporter thingies the people on Star Trek had on their tunics -sort of a "Beam Me Up, Scotty" look to it. Since it connects at the chest, I'm hands free to read, correct student work, sleep, eat, watch dvds, chat with family or friends that come to hang out with me while I'm getting the chemo, get up and move around the center.....the IV bags are on poles with a wheel base so I am free to move about the country, as they say in one of those airline ads.

Friday was day one and it was a long one, primarily because there is so much prep work to be done before chemo begins the first time and I also met with Dr. Karamlou for a final rundown of how all this will work. Each chemo session begins with a vitals check - weight, blood pressure, temp., etc. There is a certain irony in checking weight to be sure I am not losing any. After years of going in the opposite direction (on the scale), it's a bit weird to be concerned about losing weight, but there are significant medical reasons to be concerned if that happens. No worries, folks - the scale is holding steady! Once a week there is a blood draw to check cell count.....this is what determines how my immune system is doing. If the white cell count drops too low and stays down, chemo might be deferred for a short while until the levels build back up and it would be during this time I can't be around people much...cooties, I guess. Fluctuations in blood count are quite common, I'm told, and rarely last, but if it becomes a problem, I have to isolate for awhile.

I got both barrels of the chemo agents on Friday, Cisplatin and Etoposide, which is what made it such a long day. Each bag takes an hour or so to empty and there is a bag of hydrating fluids given before and after each one of the chemo agents. Anti-nausea drugs are in with the hydrating fluids and seem to be doing the trick as I've had no upset stomach at all. Days 2-5 are just Etoposide and then no chemo for days 6-7. Cisplatin only on Day 8 (Friday). Then we wait 20 days and start the chemo protocol all over again.

Radiation began today and I will have that every day, M-F, for the whole 56 day process. Again, another odd process for someone who has had no prior experience in any of this. I lie on a bed in an isolated room and am positioned so that the radiation beams can line up with the three tattoo dots put on my chest last week. One at the base of the throat and two more midline down the chest area. The machine lines up with the scans the radiation techs view from behind protected glass and when the cross hairs are in place, they zap. The whole procedure doesn't take too long and is not at all painful though continued exposure to the radiation is likely to give me a very sore throat for awhile. The tumor sits adjacent to the esophagus and trachea at the base of my throat so to thoroughly fry the thing, it also means radiation at or on the esophagus. Not ideal, but not too many other options if we want to get to the critical area of mass. Might be drinking lots of smoothies or pureeing my hamburgers for awhile in the near future :-)

This is now my world for the next weeks....the total time, assuming no significant delays for low white cell count, is 56 days and I should finish up around my birthday. About a week to 10 days after the last treatments, scans will be done to measure progress. Obviously, the birthday present I want this year is significantly reduced (or thoroughly evaporated) tumors and lymph nodes! The pancreas cancer is still a big issue and must be addressed as soon as reasonably possible after this treatment. Though Cisplatin is not a pancreatic cancer specific chemo agent, it will go to the nodule and have some effect on that too. Ideally, it would best to treat both cancers at the same time, but the effect on my body of the two chemo agents that would treat lung and pancreas or radiation on both sites would be so hard on my body, it is possible treatment would have to stop midway and then nothing could be done for either. Not a risk worth taking.

This has been an amazing, bizarre, sometimes surreal and emotionally challenging journey and not without it's tears and apprehensions. Truly, there are probably 10,000 others things I'd rather be doing than all this cancer stuff, but I trust God and His plan for me and I know we are on this journey for a reason. The daily blessings are many and I savor every one of them. If you've been following Portland weather, it has been a season of extremes this winter and we've had record snowfall in December, the absolute deluge of rainfall and now record breaking high winds (for days in succession). The days are crystal clear blue skies and sunny (love it!), but very, very cold. I'm delighted that Corbett and I have taken good, long walks every day in the sunshine and enjoyed every minute of it. I celebrated the first day of chemo by going to the movies with mom and friends on Friday night and am so grateful to feel good and have energy to do just the simple normal daily things. Today I enjoyed a hamburger and fries with my dear friend, Annie, and it was great! Enjoying them before I have to put it in a blender :-) My community of family, friends, church, neighbors and people I've never even met, but are praying for me through requests of others - I've received e-mails and cards from people that are offering to be prayer warriors in places I've yet to visit....it's such a gift I've been given and I don't take a bit of it for granted. God continues to bless me beyond all understanding!

I told my kiddos when I left Fowler last week that I plan to be back to school with them after spring break at the end of March and I have every intention of getting through this rough road ahead and making good on that promise, blue Marge Simpson beehive wig and all! Call me, write me, come visit me, hang out with me while I'm having chemo - it's all good.

Love and hugs to all of you, I know you are wearing those steel toed boots and kicking a little cancer butt.....right along with me!

Susan

2 comments:

Anonymous said...

You Go Susan! Sounds like you'll need lots of ice cream for those sore throats...

Melissa said...

Thank you so much for the detailed info. I am following you all the way! It is so very encouraging that you are tolerating this so well! You are going to soar (not sore). Wasn't the inaugeration awesome?
Melissa