Notes on my vacation...

Ahhh... traveling.... It can be so much fun. I had an awesome vacation this past week. I need to make myself some notes so I don't have a fit of chemo brain and forget what all I wanted to talk about. In short, I loved every minute of my trip. We had lunch with some friends. We had lunch with some family. We spent quality time with our cousins. We visited a vodka distillery. We hung out with aunts and uncles. We saw a beautiful wedding. I met new friends ( who now have been informed... by me, of course, that I am the most awesome person ever... hey... when you got it, you know?). I found some butter. I drank some wine. I was guarded by ferocious dachshunds at every nap. I video taped some silly things. But mostly, I enjoyed being surrounded by people who love me for me. So... I have lots of posts to write, but right now I am going to bed.

How a bad dress can be a good thing.

Ahhh... Vacation!  Don't we all love that word? For me, this has been a double vacation. I have been off the harsh chemo drugs for a month and I am in the bosom of my extended family for a week. For me, that has been a recipe for relaxation. And when I relax... I sleep. I think I have slept more since Tuesday than I have slept in months. I get up, I have coffee, I go nap. I get up, I have another coffee, we go out for a couple of hours to visit, I nap. Last night we came back from lunch with friends and I fell asleep. My cousins and I were going to go out, but at midnite when I finally woke up, I found them asleep on the couch... so I went back to bed. I think my body has decided that if it isn't wearing the correct colors of work, it has a license to sleep. And I am not fighting it.

I am back up north with Michele's side of the family, who I adore. Strangely, they like me too. I don't really know what I did to earn this love, but I am not complaining. The day before yesterday, we visited with a cousin for lunch, hit an Aunt and uncle for a brief visit and then stopped at yet another aunt and uncle's house for a much longer stay. I don't think Michele intended the visit to be that long, but see... there was this fiasco with a dress.

One of the cousins is getting married. It's going to be a Renn/Celtic wedding and the flower girls dress is supposed to be period clothing. Now... I have some experience with period clothing. Here are some pictures of my absolutely beautiful, perfectly made Revolutionary war dress.



Full Length shot of Revolutionary war era dress

Handmade Revolutionary war era dress.

For a brief period, My friend Nancy had me joining her family in Rev War re-enacting, and those dresses are complicated and they are made on the person to fit exactly. Those dresses were perfect to every last detail. This flower girl dress looked worse than something made for a Walmart costume section. The seams were puckered. The thread was black on the red satin, sewn unevenly. When we removed the hemline seam to re stitch it, we found extra material sewn into the hem for no reason. It looked like the seamstress had just folded the bottom over a couple of times, stitched it quickly with whatever thread she had and then cut off the excess. There were seams stitching nothing to nothing. The zipper wasn't anchored in. There was extra material everywhere, the black neckline was torn and hastily re stitched to cover the hole. Basically, I could have sewn this while under the influence of Chemo. The kicker... the family was charged $150 for this. I can only assume this dress was not finished, but was hurried because of a short time line. At any rate... the dress repair provided me some time to sit and visit with my In-laws. And I enjoyed it. For me... the terrible dress was worth thousands because it gave me a chance to sit and share an evening of closeness with one of my Aunts. I mean, I love crafting with people. And ripping stitches out of the same hemline makes you sit close, and as you seam rip, you talk. You share funny stories. You plan. You ask questions. you learn.

I kinda hope there are more bad dresses out there waiting...

Shake your Bon- Bon!

I am probably the silliest woman in the world. People who know me well know that I am missing  that filter that most people have that stops them from doing insane things in public. I have been known to sing loudly (and badly!) at work. I will break out into a rumba or swing if the song on a store's radio system is one that I like. I wear goofy hats, odd glasses and will happily show you my mismatched striped socks if you ask. I have no problem flashing my mastectomy scars at the curious. One of my favorite things to do, however, is dance. I love dancing. Michele and I took ballroom dance lessons for about 3 years before I was diagnosed.  With the cost of treatment, my up and down energy levels and other factors, we had to stop taking lessons, and basically stopped going to the dance parties. But that didn't stop me from dancing on my own.

People worry about how I am feeling with all that has been going on health-wise. Well... at the height of the really toxic treatments, I felt like hammered whale poop. But after the mastectomy and the change to different chemo treatments, my energy started to return. As it returned, I started trying to return to normal... Or at least my version of normal.

Let me set a little scene for you. We live in a small southern town. Everyone here knows everyone else. We watch out for each others kids and dogs (yep... if your dog gets loose and you aren't home, someone will just put the dog in their own yard till you get home, or in my case, since I work walking distance from the house, they just call me at work and say Hey! Cleo is on my porch. Should I just put her in the yard again?). As the weather warms up, we spend evenings on our front porches. You will hear guitars playing into the wee hours, sometimes accompanied by singing (One night my neighbors sang "Simple Man" by Lynard Skynard till 2am). Sometimes alcohol is involved and you end up with the incident we all like to remember as the underwear serenade (a Neighbor stood in his doorframe, in his tighty whiteys serenading us with "You've Lost That Lovin' Feelin'" ... and this was the first night we were in our new home... talk about Welcome to the neighborhood).  No one here calls the cops on this stuff... we all just get along and sometimes shout out song requests when we get tired of the same song over and over (I swear... I do know all the words to every Skynard song now). So, my contribution to the neighborhood weirdness quota is my dancing. I dance anywhere and everywhere. Mowing the yard is a great time to practice your latin hip movements and also, if you have a stubborn patch... West Coast Swing will get all those stubborn weeds.  I am the Lady who Dances while Mowing.

Lately, however, I have added a new title.

See... I have my IPod. On that evil tool is a whole bunch of dance music. I walk to work listening to it. Okay... maybe WALK is not the right word. In truth, I dance to work and Dance home from work. Yep... my porch sitting neighbors have seen be bust out in triple steps, arm styling and many a twirl. They have witnessed many a West Coast spin as I dance with my imaginary partner down the sidewalk.  On one memorable day, a man walking the opposite direction with his groceries stopped to join me as we both displayed that , Yes, we DO have the moves like Jaggar.

So... almost two years into a Stage IV diagnosis, I am still feeling well enough to share my joy.

 

Easter is coming!

While on vacation at the beginning of the month, I talked Michele into doing easter bunny pictures. I love my wife... she will humor me in just about anything. She will sing goofy songs to me. She will dance with me in the aisles of Target as we listen to the Muzak playing on the in store radio. And she will snuggle bunnies to make me happy. I love her so much! Just Sayin...

 

 

 

 Happy Easter everyone! May you be Blessed this weekend and every day.

 

 

Trials, screens and grass skirts...

The news is in... I am in the Phase 1 trial at UNC-CH. A whole bunch of scans are being scheduled again so that the company running the trial has all the information they need as accurately as possible. And, hey... I am okay with that. The additional great news is that the trial will start for me on 5/6. I will be able to attend two weddings!

When we got the news that I was accepted into the trial, Michele had just gotten home from work (at almost 1am... geeezz) and I asked her to check her email, as mine was eating mail and never letting me see anything important. Actually... emails from the Pyramid Collection come through... and they are kinda important to me because I love their clothes... but emails from doctors never seem to show up. Anyhow... She opened the email and when she read it to me, I jumped up and danced around the kitchen, hugging her and my son and of course, I cried. I don't think anyone could have been more excited than I was right at that minute. I felt like I was going to explode. I felt like running through the streets shouting. I felt like a million pounds had been lifted off my back.

Since that day, I have noticed that all those little aches and pains I have been experiencing have all seemed to disappear. I suppose I was more stressed than I realized.

Other than that, I have no more news on the cancer front to share... so I will just let you know what this particular goofball has been up to lately.

I got my dress for the wedding in NY. I also bought some Cinderella slippers. Little "glass" slippers with a "diamond" heart on them. Yes, they are just clear vinyl with some glitter, but I love them. I plan to wear my dress and my Cinderella shoes to my first day of the trial. Maybe even a tiara. I will be the Cinderella of the therapy room.

Yesterday I was at work and a lady who spoke with me weeks ago about my cancer came in. She told me she had been putting off getting checked for years, but after talking to me, she said I just stayed in her mind. She finally made an appointment. Luckily nothing but a benign tumor. She wanted to thank me for motivating her to get checked. I hugged her (but I am the queen of hugs after all).

Me getting Pie faced for CMN.

I also was raising money for CMN. My job does this every year. We usually do a booth at Spring Fest. One year we made Child ID kits for over 2000 children and raised 1800.00 for CMN. Another year, I had two local Urgent Care centers do blood pressure screenings. All the while I am standing in the booth or the middle of the road begging people for change, dollar bills, or anything to support the hospitals. And one year, it rained. Surprisingly, I made a lot of money that year too... probably because I was a 42D in a wet white t-shirt... bra less because it was HOT... and well... Wet t-shirts can earn you some money. But this year, I will be unable to do the booth because of the trial. So... never one to be afraid to embarrass myself, I donned a Groucho Marx mask and a hula skirt. My staff took my picture and posted it at the register. The goal was each shift has two cashiers. Each cashier had to raise $20.00 to get me out of the mask and then $20 to get me out of the skirt. First shift got me out of the mask... but not the hula skirt. Second shift got me out of the mask... then on the donation that would have gotten me out of the skirt, the lady making the donation stopped me. She was from Hawaii and absolutely loved my skirt. She offered to make a second donation if I would keep the skirt on for 10 more donations... not including hers... so of course I spent my night at work in the hula skirt. Let me tell you... a grass skirt is awesome for many things. It sways when you walk. It hides your big bottom. But... when it comes time to go to the bathroom.... a grass skirt is not your friend. Especially if you are wearing it over your work pants.

I finally heard back from someone in my company about having the Mobile Breast Screening Unit come visit my store. As soon as we get all the legal clearances... We will have screenings done right in our parking lot! I am quite excited about that.

Other than that... not much going on here. But I think we have enough blessings for the week. 

On a Galloping Horse called Cancer

Why can't I go to the doctor and hear something really great? Every time I go, the news is not so hot. I mean, it's not horrible, as in "You have X months to live" but still...

The cancer has progressed. They found all kinds of excitement going on internally. The lymph nodes that were affected are bigger now, and the spot in my lung has continued to progress and now I have an ovarian cyst that we have never seen before. As my doctor put it... "It's not like your progression is on an express train; It's more like you are on a galloping horse." So I have all sorts of options for this, but the option that my doctors seem most excited about is a Phase 1b trial by Novartis. The clinical trial supervisor has gained a slot for me. Now we just have to get all my prior scans to her and see if I am approved. 

For anyone who doesn't know... a phase 1 trial is described as:
"Phase I studies assess the safety of a drug or device. This initial phase of testing, which can take several months to complete, usually includes a small number of healthy volunteers (20 to 100), who are generally paid for participating in the study. The study is designed to determine the effects of the drug or device on humans including how it is absorbed, metabolized, and excreted. This phase also investigates the side effects that occur as dosage levels are increased. About 70% of experimental drugs pass this phase of testing." - From UNC-CH clinical trials website.

This is a trial for a HER-2/ HER-3 fighter. There is no information even posted yet on this trial, as it opened on the 25th of March. When I get more info, I will share it.

Michele is worried, stressed and scared. Mom is the same. Me... not so much. I have used up all my worried and scared for now. I knew it was progressing. I could feel it. I knew deep inside that the Xeloda wasn't working.  Any drug that comes at me with so few side effects... especially with the way I attract bizarre side effects, was not quite strong enough for this body. But I would like to thank the people at Genentech. Their drugs help so many people and I will be going back on their miracle drug Herceptin while we wait for the trial to either accept or reject me. We know that it works for me.

So... why am I doing this trial? Well... if I get accepted, the trial is a chance with a drug that they have high hopes for. It is combining a drug I know has worked for me in the past with a drug from a well respected company that they have high hopes for. Also, if the trial takes me, I will be checked more frequently. If the drug is not working for me, I still can go back to my other options. If I use one of the other options first, then I don't qualify for the trial. So, as Michele put it... this is another torpedo in our arsenal.  I understand the risks, and I am okay with them. It may not work for me. It may give me really bad side effects (but I am used to that), and then there is the biggie... it may be life threatening.

I know a lot of people would look at that last risk and say Heck No! No trials for me!, but I am not that person. If something were to happen, if there were some really adverse side effect, at least we would discover it on one person instead of having it happen to hundreds. Giving this a shot for me is a chance to help women I will never see, but whose lives I hope to have a part in saving. I really hope it works for me and that I sail through it with flying colours, with my cancer held in stasis (which is the goal of this test from what I understand). But even if the worse should happen, at least my life will have been lived as I always try to live... in service to others.

Vacation!

I have been on vacation, of sorts, this week. It was time for my check-up scans and I needed some time to recover from the horrible Xeloda foot thing, so I haven't actually done any vacation type things. I mean.... I didn't go anywhere but mom's house, home and the doctor's office. But still, it has been nice to not really do anything much.


For the first time, I had a CT scan with barium sulfate. For those of you who have not yet experienced this great pleasure... lemme tell you. My oncologist office offers three flavors: Vanilla, Banana and Berry. I have learned from my experiences with protein drink mixes, Boost and Ensure that vanilla flavor is about as far from vanilla as... well anything. It's more like what you imagine chalk would taste like. And Berry... Well, berry flavored is purely subjective. I mean, exactly which berry is it supposed to be? I love strawberries, raspberries, blueberries and even elderberries... but mixed berry never really tastes like any particular berry at all. So of course I picked banana. After all, bananas are kinda bland and don't really leave any residual flavor in your mouth, so a banana flavored drink must be safe, right?  You need only look at my face to know what it tasted like. And you can't drink anything else to get the taste out of your mouth. So I drink half at 8:15 and half at 9, then head to the Dr's office where they gave me more. Only this time... it was Berry! I wasn't expecting berry. I was not mentally prepared for the confusion that comes with berry. I took my first sip and went "Oh Jesus! What is this???" The nurse told me berry flavor very sweetly. I said okay... I just wasn't expecting it. And I held my nose and chugged it down.

I like the CT scan. Well maybe like it isn't exactly what I mean. When it comes to scans, this one is probably the one I prefer. It's quick, they can use my port instead of my hand or arm, and the machine talks to you. It's a very comforting female voice that says "Breathe in... Hold it.... Breathe out". Much better than the MRI which clanks and whirs and slams and makes you feel like you are being swallowed by a whale. What I am not wild about with the CT scan is having to keep my arms over my head. Maybe if they had some handles or something I could use to grip it would be easier, because anyone who has Lymphedema can tell you, holding your arms over your head for 15 minutes is not comfy. But I love the lady who administers it. She is funny and gentle and asks whether you want to use your port or your arm, do you want me to freeze the spot, are you comfortable... she just seems to care a lot, and that means so much.

Actually... I have really enjoyed all but one of the people who administered my tests. The one I was not so wild about gave me my very first echocardiogram. I still had both breasts. One was sore from the port surgery I had just had, the other was the one with the tumor, and the biopsy sites, and the incision where they removed my skin to test for IBC. I was in pain, I was scared and I had up until then, never had any serious medical problems. The tech was brusque, not very talkative, and was considerably less than gentle with that wand. The tech actually made me scared of going for my next echo. Imagine my surprise when the next tech who did the echo didn't hurt me by jabbing me so hard under my ribs, or pressing so hard on my sides. The next tech made me laugh, told me what I was seeing on the screen, explained the different angles. Now a trip to get my heart checked is not something I dread... I actually look forward to it.

So... I have a friend who is becoming a nurse. She is funny and warm and caring. She is also professional, straightforward and will work her butt off to take care of you. I know this because she used to work with me as a pharmacy technician. I have seen her with patients. I have seen how she treats each one like they are the most important person there. I have heard her on the phone with insurance companies, fighting for her patients ( I was one of those patients). While I hate to lose her from my company, the thought that she is soon going to be taking all that warmth and concern (and yes, even that snappy temper when the insurance companies act stupid) and become a nurse excites me. Nurses are so important to patients. Yes... we depend on the Doctor to make us healthy, but it is the nurses we interact with most. They are the ones who have to stick us with needles, who have to deal with our files, and who have to be our go between with the doctor, the pharmacy and the insurance. They are the ones who touch you gently on the head as they change out one bag of chemo meds for the next bag. They are the ones who tuck you back in when you have to get up and go potty with your pole. They pick up your bear when you drop it in your chemo slumber. They wake you up as gently as they can when they remove the needle from your chest at the end of your treatment. Nurses are like temporary mommies taking care of their sick brood. How they do it, I don't know... but I am thankful for them every day. And to my friend who is going to school.... I still think you would be the best oncology nurse ever.