• 10May

    I had chemo on Wednesday, and believe it or not, I feel pretty good. This is my fastest bounceback from this chemo cocktail that I’ve had so far! I slept a bunch right after chemo, but I got some energy back pretty quickly. Usually it takes a week to ten days.  This, I think, will be less. I even felt well enough to do a little light shopping with Mama-san.  When she came down here in October…well, let’s just say it is hard to pack for all kinds of Louisiana weather so she got a couple of summer things to tide her over.

    On top of that I went to the work out space and did 3/4th of a mile! Woo-hoo. Can you believe that? I was doing miles and miles at with an incline too! Or I was walking through the neighborhood at a fast pace. I was averaging 8,000 steps a day.  I have a long way to go to build myself back up from all this esophageal cancer crap.  That’s frustrating, but I feel good that I’ll be able to do it. I’m just impatient!

    Thanks to everyone for suppport and good wishes. It’s been tough, but it would have been a whole lot tougher without you!

  • 10May

    Ok, I admit it, I’ve been a fan of Bravo’s “The Real Housewives of NYC.” However, I have a little bone to pick with them (or probably more precisely the editors/producers.)

    As Bravo replays these episodes a bunch of times, I’ve seen the clip enough to be able to recite the dialogue.  It is the scene where they go to Hope Lodge in Manhattan to volunteer to cook dinner. The first few times I saw it,  I thought it was just me being silly, but the more I see it, the more I dislike it.

    Hope Lodge Manhattan has been a very important part of my esophageal cancer journey. It made it fiscally possible for me to have my esophagus removed by Dr. Flores and Memorial Sloan Kettering. Hope Lodge has enabled me to meet cancer patients in all parts of the journey. I was a teacher and a learner. People come to know each other at Hope Lodge during their most vulnerable and we all get stronger together for being together for that part of the journey. The staff is terrific and they try to provide for our needs so patients can concentrate on getting well. I met people who are like family. My Hope Lode family stood in for my Louisiana (and Ohio) family, and I am so grateful for that. I stayed there for a total of 70 days and it is like a second (or third) home to me.

    So when I saw the 6th floor kitchen area on the show, I was so excited! Then I saw the HL Director, Karen Radwin, who is great. I was so happy to see the Real Housewives at Hope Lodge.  Then they deteriorated the situation into a spat about the age of LuAnn’s husband (the Count was rarely on the show anyway…and frankly who cares about his age?) When I see that scene, I am frustrated that they could turn something great into some petty argument. Most of their time at Hope Lodge (that made it to air) was about this. Now I love the Housewives when they catifght it out in their homes, trendy bars and parties, but bringing bad karma to HL is NOT ok.

    I hope it was a better experience for those who were there.

  • 30Apr

    I’ve told you how the Relay went, but after a little time, I can tell you what I learned.

    The Relay showed me so much support and encouragement for my cancer fight.

    The Relay showed me that people will be far more generous than even I can imagine.

    The Relay showed me that people have been committed to this fight much longer than I have.

    The Relay showed me the love people have for those they’ve lost to cancer and those people are still very much in the hearts and minds of their loved ones who remain.

    The Relay showed me that making the time to “pass time” with friends is a valuable commodity in this world.

    The Relay reminded me that I am strong and am very much in my cancer fight even if  I get a little weary on occasion.

    The Relay reminded me that I don’t get through this on my own and that my struggle is a struggle my family and friends would help carry if they could.

    The Relay reminded me that good hearted people coming together for common purposes, to celebrate, remember, and hope are always stronger than cancer.

    The Relay reminded me that as in life, my attitude is my most powerful resource, and my attitude is under my control.

    The Relay reminded me that the best events I’ve been to are the ones where I laugh a lot and cry just a little.

  • 26Apr

    Friday was LSU’s Relay for Life (it had been rescheduled due to weather) benefitting the American Cancer Society. I’d never been to one before, but that didn’t stop me from having a team and getting out there! It was a beautiful day. It was great for us to just get out and pass a little time together. I met some very nice new people and hung out with friends too. I did not stay the whole night, and we didn’t give away all the prizes…which I knew would be a challenge, but that is ok. Lots of good prizes did find their way home with others and we raised a bunch more money. My goal was to raise $3,500, the cost of our staying at Hope Lodge in NYC, but we raised closer to $5,000 all totalled. There were times when it was fun, and times when it was touching. I was asked to participate in the luminaria ceremony which was an honor.  Also I saw 3 luminarias with my name on them.  The whole thing made me feel cheered on and cared about. I wish more cancer fighters had been there to get that big boost like I did.

    The next day I went to Jess and Blake’s wedding and it was beautiful. It was classy and sweet and fun, just like them. I love it when weddings suit the people getting married.  That has to be a good omen! Much love, happiness, and a little something from Williams Sonoma for them! :)

  • 24Apr

    Ok, so this de-yellowing process took about a week for the majority of it, but I’m still itchy and slowly working my way back to fully normal. I knew this chemo would be hard on my liver, but I had no idea what that really meant.  The number that measures my liver function is supposed to be 1, it is now 3 and still dropping, but at one point it was 12. So you can imagine that at the 12 stage I didn’t feel so hot.

    I’m not wearing my wig anymore. It is getting warm in Louisiana and it was itchy and my sensibility won out over my vanity. I have little sproutlets of hair and it doesn’t look great, but if feels better that is for sure! It only took me losing my hair 3 times to get to this spot. The other times, the wig was securely on my head for the smallest of trips outside the house…or for any visitors! Occasionally I get funny looks but no one has had the guts to say anything mean…I’ve had friends experience that.  If they did, I’d have a snappy comeback!  And of course, my friends have been very supportive! My LSU bucket hat has been a very good investment!

    I’m finally back at work on a regular basis. It depends upon the week as to how many hours I can do, but the further we get from chemo treatment day, the better I feel. So one week isn’t great and then it gets better and better. The first week after chemo I move kinda slow, physically and mentally, but then that wears off and I feel like normal again! It is a good feeling to go to work. Sometimes mom comes with me and I’m lucky that my colleagues have taken to her just like me.  So on those bad days she comes with me and reads in the library.

    I’ve tried to build up my strenght a little by walking, but it is slooow progress. However, I’m workin’ on it!

    Tonight we have the RELAY FOR LIFE benefitting the American Cancer Society. I don’t know that we’ll relay the whole night but we raised a lot of money…waaaay more than the team goal of $3,500. We have great prizes and it is supposed to be good weather. So I’m hoping we have fun and raise a little more money.

    More later! Be well!

  • 05Apr

    It has been an eventful week! Thursday,  March 26th, the Relay got postponed, and I started turning really really yellow. My face, hands, eyes, all of me just seemed to have this gross yellow glow. I was still peeing in glow in the dark colors and I felt horrible…too horrible to even turn on my computer. The itching was out of control. I was in misery.

    Dr. Bienvenu saw me from about 20′ away and saw how yellow I was.

    Finally after 2 ultrasounds, a CT scan and an MRI, Dr. Christensen determined it was a blockage in my liver. That kind of threw me. I felt terrible and it seems like things about your liver are serious by definition. So, Dr. Christensen decides we need to put a plastic stent in my liver where the blockage is to open things up. It is probably a lymph node pressing on that area.

    So, I was scheduled for Thursday to have a stent put in at OLOL. They were going through my mouth to get to my liver, so naturally I was sedated (knocked out) for this! As usual the people at OLOL were nice, the process of checking in and all that stuff was really efficient. I guess they didn’t get started until a lot later than planned and once they got started they had a tough time negotiating my replumbed anatomy. So what was supposed to be a 45 minute procedure turned into a 2 hour procedure.  However, they got the stent in!

    The only hitch was at once point Mama-san was trying to find out where I was, and no one seemed to know. So for a few minutes I’m sure she was freaked.  However, I got found, which is good! It was supposed to be an out patient process, but because the procedure took so much longer, I stayed overnight…which was good. (special thanks to the night nurse who brought me popsicles!) Lyn and Ashley came by after work which was right when I was getting ready to leave post op for my room. I was pretty sedated, so they can’t hold me to anything I said! (Actually, I probably just blathered and didn’t say anything of consequence.)

    I felt so bad before the procedure…I can’t explain it. It isn’t about being yellow as much as it is about feeling terrible.

    Well today is Sunday and I’m less yellow everyday! I still itch, but it’s better. I am really tired and my tummy hurts and my lip was swollen where they had the tube going into my mouth, but I’m feeling better! Hopefully I’ll continue in that direction.  Sister Dulci said that I have what it takes to beat this. I believe she is right, but sometimes I’ve gotta dig down deep!

  • 27Mar

    Monday was chemo day! (Ok I’m trying to feign some excitement…) This was my second round with the new drug combination and it went better. Dr. Bienvenu changed my pre-meds so I didn’t have some of the bizarre side effects I had last time, and of course we used my new port, which was easy to do…but it still feels weird. No matter how you try to do it, chemo takes a whole day. From blood work and seeing the doctor to the time it take to put in the three chemo drugs, it’s a five hour adventure.

    I feel pretty good today after a couple of days of staying quite. This chemo is harder on me than the other two previous ones. As long as it works, I don’t care! The nausea is tough, even though I’m medicated for it. Today I have to get a neulasta shot to build my white blood cells and that can knock me out a bit.

    I think I’m handling it better as I was able to go to work for a couple of hours on Thursday, not just telecommute. Considering this is only 4 days past chemo, I think this is progress!

    LSU”s Relay for Life event has been postponed due to all the crazy weather. So stormy! We have lots of fantastic prizes so I’m hoping it goes well on the new date!

    The Mama-san is busily pureeing stuff like a scientist.  To be honest pureed blackberries aren’t that great, but I eat them.

    I’m off to get ready for work today. I’ll make it for a few hours today, and pretty soon I’ll be on a streak!

    Be well!

  • 22Mar

    The thing about esophageal cancer is that it affects a lot of other stuff, and that stuff affects stuff, and then you wind up going crazy trying to keep track of all of the stuff.  Maddening!

    Like right now I’m taking chemo (5FU, ocsaliplatin, epirubicin) and a few smaller ducts in my liver are a bit enflamed.  It could be enflamed because of the tiny little cancer spots all over the place or it could be due to chemo. If it’s because of the spots, more chemo is what will make it better. If the chemo is the culprit, then that is a different story. Nevertheless, the inflamation makes me itchy….really, crazy itchy…my liver makes me itch..Is that weird? I think it is. I can take something for the itching but it is only moderately successful. If you see me, feel free to scratch my back! Oooo! That would be great…random back scratching!

    I also, like many folks with cancer, am hyper aware of just about everything.  Is that a pain? Was that pain there before? How bad is that pain? Do I have to pee more than usual? What color is it? And there is often a strange answer.  Mama-san asks if I have pain and to describe it and I am stumped for words. (Right now I am pain free.) The chemo makes pee red…which is shocking even if you know it is supposed to happen. Why I feel the need to share this is a bit beyond me at the moment. I guess I want you to understand that a lot is going on in my mind. hahahaha!

    Cancer means that some part of my cells went “rogue” in a bad way…which shakes me up a little sometimes. I wonder if some other part of me will revolt too…actually I don’t think about that too often…just sometimes. I thought my cells and I were getting on famously. I’m an entertaining girl with many fine qualities. Do my cells know this?

  • 18Mar

    …but first, thanks to all who have donated time, money, or prizes to the Geaux Past Cancer Relay for Life Team! There is still time if you haven’t and want to!  Check out the team page at http://main.acsevents.org/goto/geauxpastcancer. It is still not too late to join or donate!

    Now on to today’s news! Met with Dr. Bienvenu and the CT scan was good. No cancer visible. (Now remain calm…it doesn’t necessarily mean no cancer.) This means that none of those tiny spots that Dr. Estes couldn’t remove have sprouted into something larger.  This is very, very good news. Of course you know, for every two steps forward, there is one back. The scan also showed some ducts enflamed in my liver. So before I can resume chemo, I have to get that figured out. It isn’t cancer, but it is what is making me so nauseous between chemo treatments. So more tests and hopefully Dr. Christensen can solve this and keep me from getting too off track with chemo.

    I’ve gotten lots of emails with people donating prizes for our Relay for Life Team and some emails and facebook posts with people just saying really nice things to me. I am a very lucky person to have some idea how much she is cared for! I’m humbled and honored and just plain happy.

  • 17Mar

    And no, I’m not referring to wine. (Bummer, huh?)

    I was a brave gal and finally relented and had a port put in my arm on Monday. As you may have read in a previous post, I did NOT want to do this and have had quite a lot of chemo without one. Thankyouverymuch! Something about it seemed creepy to me, but I put on my big girl underoos and did it!

    Get this, they keep you awake for this procedure and you could even see it happening if you wanted to. I did not. Of course, my arm was numb and I was pretty relaxed…thank you magic of medicine! Still, she put a titanium thingy in my arm. Not that I have biceps of steel, but there didn’t seem like there would be room…she made room.

    I deserve the Snoopy Band Aid for this one because I was freaked about it and I behaved quite well.

    When they took out my esophagus and part of my stomach and sort of replumbed it all, I wasn’t freaked. Nervous a little, sure, but not freaked.  So anyway, short story long, I will now make chemo nurses breathe a sigh of relief. I aim to please!

    I also had a CT scan Monday and get the results on Wednesday. Let’s think really good thoughts!

    My arm is sore and keeps getting bumped just being in the house, so I’m staying quiet today.

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