Gotta Love Color!!

Just a minor update folks!!

I went for radiation yesterday but it was finalizing mapping, not actual radiation treatment. That will begin today.

So not on my Top 10 List of favorite things to do - lying still on a hard metal table in an uncomfortable position would be right up there.

Part of the problem is the whole lying STILL. My head is facing upwards towards the left, both arms are up over my head, the "mold" which was made to help me stay in correct position is not what one would call soft and comfy. Did I mention the table was hard, unyielding metal????

The amusing part of all of this, however, is I felt like I was in some science fiction futuristic alternative universe. Here is this big machine raising me up, moving around me, coming close CLOSE to me, moving back from me, making noises, changing lights, and this is not yet the real deal. Hmm...

They (my royal Radiation Attendants) were working on making sure all the measurements are accurate, entered into the computer accurately and I am sufficiently marked for good templates to be made with which I will then have radiation applied to only the place where it is deemed necessary and such.

To do this, I got more, and more, and more mapping marks. I am now a veritable cool spectrum only rainbow. In addition to the lovely blue marks I already had been mapped with, I now have a rich, royal, and luxurious purple, a turquoise green and then whatever colors result from when these colors overlay each other.

Today I will find out what the "templates" hold in store for me. Then I will go see "Harry Potter, The Deathly Hallows, part 2" - which I have already seen, but my younger son has not and is MOST anxious to see.

So now I will sally forth to don my sleeve ( I have yet to pick up the gauntlet which IS now in stock at the Gauntlet Store) and do all the other things necessary to my daily activities.

The XRT begins...

Throwing Down the Gauntlet

Tomorrow I have Herceptin infusion. It will have been THREE WEEKS since my last one. YAY me!! I am enjoying not having to go every week. I am feeling a LITTLE anxious about going tomorrow, but nothing near that "Thursday Phobia" I had when I was undergoing the chemo cocktail and the weekly infusion of H. Very happy to not be afraid of any day.

Dr. Newman, my radiation oncologist, had referred me to a Lymphedema specialist, therapist. She has like this 10 week waiting list!! However, I got a call yesterday that she had had a cancellation, could I come in Wednesday at 9 am? You bet!! So Ruben -- my faithful sidekick -- and I went there this AM. She was quite nice and we had some fun with her and I was prescribed a compression sleeve and a gauntlet. (Thus the name of the post. After all, don't you just love that - a gauntlet, I do.) I have some new and exciting information to process, some new procedures to manage lymphedema, which, admittedly, I have really NOT had much of a problem with, but which will likely be exacerbated by radiation and I now am equipped to deal with it for life.

Unfortunately, when I went to pick up the sleeve and gauntlet they only had the sleeve I need in stock. I'll have to wait a while for them to get the gauntlet in stock.

Okay, it's probably just me - this whole delight in having a "gauntlet" - it's the romance of such an old word, don't you know. Can you not see me in "lady of the manor" clothing with absolutely Robin Hood clothing??? Only clean. With indoor plumbing, central heat and air, all the modern amenities...

My hair is definitely coming in!!! I can see color now where before it was like baby fuzz, and it definitely is growing. The upside of having no hair - I haven't had to shampoo, condition, or even comb my hair AT ALL for months now. Plus - the bonus of it is much cooler!!!

At the lymphedema therapist's this morning it was really quite warm. I was able to take off my hat and headband and feel a bit cooler. Ruben and Marilyn had to keep their hair on. Well, you better find humor where you can, people!!!

I am actually feeling really quite good!! I can taste again, I am actually hungry again as opposed to merely obsessed with the idea of food, I do get fatigued, but - oh well!

I am so blessed, so grateful for the blessings and I am happy to greet each day.

I wish the same for each of you - only without having to go through this mess!!!!

A New Map of the World

well, sort of....

My life has been dictated by medical issues this entire year. Just the fact. So last week we took a much needed break and took a short trip to New Orleans to visit my uncle and aunt.

They were so cute - they were worried that Ruben and I were probably "bored hanging out with the old folks." We actually had a very nice visit and we had fun. They are interesting, funny, kind people. My uncle at 83 is really a very good driver. Does that sound scary? To have an 83 year old drive you around and into N.O. proper? Well, take a deep, calming breath people!! He is seriously an alert driver with very good reflexes and consciousness of other driver and their foibles.

We visited the World War II museum, we went antiquing (oh, I found a FABULOUS hat that my sweet husband bought for me), we went to the Abita Springs Brewery, we visited my 2 cousins, we ate like kings and queens and we R-E-L-A-X-E-D!!!

It was great. I really needed to just get away and unwind for a bit. And we laughed a lot. I must tell you, Ruben is a huge Dallas Cowboys fan and my little firecracker aunt Jo is totally ready to poke fun at him for that. We were talking Saturday morning (after {who dat?} the Saints kicked butt in their first pre-season game) and she casually mentioned that, yes, The Saints had played pretty well and had a good margin of victory unlike the Cowboys who just eked by the Broncos. I started laughing immediately and it took Ruben just a moment to realize he had been dissed. He cracked up too. As much as he dishes out, he is certainly able to take it. He just had not expected aunt Jo to dish on him... very funny, indeed.

Before we left last week, I had an appointment with my Radiation Oncologist, Dr. Newman. We both liked her very much. She is personable (which always helps) and very thorough. After she came in and spoke to me she asked me if I had any questions. She was SO thorough, though, that she had addressed any questions I had at that time. I did reserve the right to come up with more - you don't know what you don't know until you find out you didn't know something.....

She did advise me that I am healthier than most of the people who work in the building! Once I start taking the tamoxifen or WHATEVER pill I will have to take the rest of my life that will be my only prescription! Go Melanie!!

So - we had set up an appointment, which I had yesterday, for "mapping." I am now mapped and marked. In a teal blue. No tattoos (yay!!), just permanent marker - which WILL fade away and have to be re-marked. And I have my own personalized "form" which will hold me in the proper position for radiation.

They wanted to start me next Thursday. Uh-oh. I have a Herceptin infusion that day. At 10:30, which was when they wanted me to begin radiation, and the infusion will take about 3 hours. So Radiation will begin the following week. I will go on Monday for a "dry run" and to talk to Dr. Newman, then Tuesday will be the first of the "real deal" appointments and I will be able to set up appointment times. I should have no problem setting them for my convenience. The people I met yesterday, Sam (what a cutie he was) and Brandy were very nice.

The radiation treatment proper will take only a few minutes. However - I will have 6 1/2 weeks - or 28 (or more if necessary) of radiation. Monday through Friday. I'll just have to plan what I will come in to town to do in addition to radiation since you just don't go all the way in to town for just one thing when you live out as far as we do, not with gas as pricey as it is!! And besides which, it will take longer to get there than the appointment will take!!!

I can expect to get fatigued (nothing new there compared to chemo!) and possibly burned, but all in all - this will be a cake walk compared to chemo. I say that now! Really, I do know it will not be anything like this first part has been, and I am happy as a clam to not be in a box, you know???

So - my journey continues, and I am quite happy to say so!!

How to Lose 10 Pounds in 2 Days

It's quick! It's easy! You, too, can lose 10 pounds or more in 2 to 3 days!!

Oh, wait.
I lied. It is quick, but it is not easy. And it is really not something I would recommend to anyone!!!

It's called Chemo!!

Well, that is a sort of depressing start, isn't it, now? So, to go to positive -- as is my nature -- I will change my tack now.

I had my final chemo - round 6 - on Thursday July 21. 2011. HALLELUJAH!!!

The usual MO for chemo has been I feel okay on Thursday and mostly okay on Friday but by Saturday. No, no. Well, with round 5 AND this round 6 I felt okay (that's at best) on Thursday and part of Friday....

Friday evening - oh great - it is output only, shall we say. There is almost nothing going in. Certainly there is nothing going in that is not going to come right back out in the wrong direction. >Sigh<

At any rate, by Saturday evening on this round I was able to get a little bit in and just feel miserable. I had, by Saturday morning, however, thrown up enough that my throat felt like acid had been poured down it. Oh wait!! That's wrong!! Acid had been thrown UP my throat!! I asked my sweet husband if he would kindly go get me some Chlora-septic spray. Which, naturally, he happily did for me. Attempting a warm salt-water gargle did NOTHING except attempt to provoke more regurgitation - well brushing my teeth does that too. I am hyper sensitized at this time... The Chlora-septic did help some. Some. Mostly it is now just a matter of letting time heal and eating and drinking mild and soft items. I ate one half of a banana this morning and it was all I could do to swallow it, as it was too "hard," so later I made a nice soft scrambled egg.

And!!! YAY!! That was the last Friday evening I will spend dumping my lunch out the wrong way. And the last Friday night I will spend dumping what little I could get down for 'supper' and the last time I will feel that bad!! YAY YAY YAY YAY YAY!!!

I still feel somewhat weak, very fatigued, and at the same time I feel so jubilant to be finished with this part of the process!!

I had a MUGa exam (heart volume test) Tuesday before chemo and it was the same results as the first one I had in March. This is good news. It means the herceptin, the drug I must take for a year and which can destroy heart muscle - temporarily - has not done me any harm to date. Dr. Rassam has advised me that should the next test not be good enough volume wise in his estimation, that we would take a hiatus from herceptin to allow my heart to recover and then restart, as many times as necessary.

Now I am going to take a LITTLE break before I start radiation.

I know there is plenty left ahead of me on this ugly journey. I have radiation, I have the hormone treatment, I have some sort of surgery to smooth out and improve my physical appearance, I have to go to the "image recovery specialist", I need to go to some support group because there are SO many issues related to this cancer that you simply cannot begin to wrap your head around them all. I know that the treatment requiring one to 3 week visits to Dr. Rassam will not be over until what, April of next year.

I do intend to celebrate. Publicly! Maybe with a dance! And absolutely with food. Because I will be able to live in food reality that is not based merely on theory. I will be able to actually taste and enjoy everything again. I mean, come on, when applesauce and tapioca are about as far as you can go.... yeah, that is living in food theory. Perhaps more accurately, it is living in hopes of food theory becoming food reality!!

This week - I hope to go for scallops. Yum

July 8, 2011 from July 10, 2010

2nd Battalion, 327th Infantry Regiment, 1st Brigade Combat Team, 101st Airborne Division was what my younger son served with for two tours of duty in Operation Iraqi Freedom. He was a Bravo Bayonet. My nephew now serves in Afghanistan with almost exactly the same designators. Sadly, he is a Delta Demon. (Just kidding Jamie!)

Kidding aside, these young man are getting hammered and have suffered woundings and deaths. One of the young men who was recently killed was PFC Anthony Simmons. He was a young man who was from here in Tallahassee, and it was my honor to attend his funeral to represent my family, to offer what support I could to his mother, his brother - who also serves with 2/327, and his other family members.

8 July, 2011

It has been a year, today, since Anthony Simmons was killed.

I had initially started this post, as you see, last year on the day of his funeral. Something made me wait until now.

While this post is to honor and remember young Anthony, it is even more specifically to offer support and honor to his mother, Renee.

Renee is a member of a rather elite club to which NO ONE wants to belong, she is a Gold Star Mother.

I served as a Blue Star mother and I recall only too well, the harrowing pain and worry one carries for their child on deployment to war.

You think you can understand because you are a mother what it would be like. I thought that too. Until my son deployed to Operation Iraqi Freedom, now known as OIF 1. You have absolutely no idea what it is like, I promise you, until you live it personally. And it is hellacious.

Thus I know that I cannot begin to imagine what this has been like for Renee, what this continues to be like for her. I do not mean to minimize the sorrow or pain of any other family member, please understand. I single out the mother because that is a singular relationship.

There is a special bond between mother and son (sons) that I had never known about as a daughter. I have absolute confidence my sons would walk through fire for me, as I would for them. I am sure this is the case for Renee and Anthony and Nicholas as well.

I cannot begin to fathom how the strength is found to carry on when you hear your son is lost to this world. As a mom, I can tell you that you see your son, the grown man, the soldier, and you see at the same time that sweet little 3 year old who tells you you are the" bestest mommy ever" and how much he loves you. And you know that that 3 year old who you picked up when he fell and kissed his worries away and laughed with and hugged and tickled and turned into a human airplane for his entertainment is right there in front of you in the grown man. And now the eternity of him is gone.

Forever.

And his birthday comes. And Thanksgiving. Christmas. Easter. Family events. And you have to cope and go on. Surely just a morning, just any ordinary morning is hard enough to bear and you have to endure them all and every special moment too.

I think, Renee, that you have found how to become a warrior goddess among women. I think it was required of you and you didn't want to do it - who in God's green earth would? - and you picked yourself up morning and took a step, as you had to. Some days, I would bet you had to pick yourself up many, many times.

You, too, are a hero because of this.

I was proud of my city, our city of Tallahassee on that day almost a year ago. I was proud of how Rolling Thunder stood honor guard at the church, both the evening before and the day of the funeral. I was proud for you how you stood and opened yourself to kindness - from friends and family and from strangers as well, for I came to offer respect and kindness on behalf of my family and was, myself, a stranger to you.

After the funeral, I was proud of so many citizens of our city who stopped their cars and got out to bow their heads, of homeowners who came out with flags as the cortege passed. I was proud of the fact that for this miles long funeral procession, the Interstate was closed off to other traffic. Both directions. To give honor to a young hero, the Interstate was closed off to non-procession traffic. The Rolling Thunder, the Firefighters, police, sheriff deputies, emergency workers who stood to honor this stricken family in the heat of July in Tallahassee, what pride in honor they showed. I was proud of our city when, as we got off the Interstate, the sidewalks and street sides were filled with people holding flags, offering their condolences and making their efforts to extend honor to our military in general as well as to this family, this soldier in particular on his last ride. As we turned up towards the cemetery, people in this neighborhood, too had their flags and many stood in front of their homes to offer what they could.

The cemetery was packed.
PACKED.

So many people wanted to offer kindness, courtesy, sympathy, honor to you, Anthony and to your family.

I was proud of our city that day.
I know, Renee, that you must also have been proud of Tallahassee doing honor to your son.

We honor you, Renee. You have walked a whole year now with this bitter sweetness. That your son Anthony is not here and yet he is. You have shown so many people how to keep walking, keep fighting, keep your head up and keep moving.

My heart keeps empathy for you. I'm proud of YOU, Renee. And I am willing to bet that laughing from somewhere we cannot hear, cannot see, is Anthony -- saying with great pride "That is MY mom."
God bless.

Tuesday after Round 5

Oh man.
This round was really rough.

First of all, let me allay the worries I inadvertently put on a dear friend's heart with a post I had that mentioned (I think it was my insomnia post) preparing for the end... I have a positive and WILL KICK THIS THING attitude, I promise you. So saying, I know I am nearer the end than the beginning and having lost my own dear parents, I know it is a wonderful gift to leave your loved ones that your things are in order. And I believe it will be a gift to myself to have my things in order as well. I intend to stick around for quite some time..

Back to roughness....

I did eject most violently Friday evening, what little I had input on Saturday and the almost nothing I took in on Sunday - and more than that. To the point I called the Doctor on Sunday. I am really not a big cry baby, as I think most who know me are aware. In fact, when I felt so so horrible on Sunday and was talking to my sister she had to lecture me about not waiting to ask for help until I had to be hospitalized. Oh, yeah, that is a family trait - "I'm fine, I'll be fine in just a minute, not to worry." Ha!!

So I did get hold of my doctor who advised me to be sure to NOT allow myself to dehydrate and if I didn't eat to not worry too much about that for then - just pour in Gator Ade or Power Ade and if better the next day try only mild things like chicken soup. Which did help.

Whoo- hoo - Chicken soup for Independence Day celebration. Ha ha ha ha. It IS kind of funny, you know it is. That is also why we cooked out LAST weekend!

So for me, how do I know it is really, really bad? When my own saliva makes me want to eject.

Oh, yeah. Gross, I know, but there it is.

Definitely feeling better today. Saturday was the pits, Sunday was the pits. In fact, on Sunday Ruben ran out to Wally world to get me gator ade and chicken soup after I spoke with the doctor. He has been so awesome, my rock and my support. I don't know how I would have done without him by my side.

Dr. Rassam advised me that this is the cumulative effect of chemo and that the next round may be even worse.

Oh joy.

I cannot look at that right now. I have 2 weeks of improvement and I am going to focus on and enjoy each and every moment of that time - and take the Xanax before Herceptin infusions!!

Today I got up had a cup of tea (which oh, how I long for a good cup of joe!) and a banana, got viciously attacked by my cat - thank goodness I had my robe on!; then after I let my stomach tell me it was okay I scrambled up a migas breakfast (corn tortilla cut up and cooked then add scrambled egg) and 1/2 of an avocado. I did eat the avocado half but couldn't finish the egg mixture. It was tasty but I just don't seem to be able to eat as much - well there is a blessing!! - and because I had felt so queasy for so long, I figure it will be far wiser to under eat than even eat enough!

I slept very ill last night, but then I will sleep well for the next couple of nights so that is okay too.
My sweet friend Fran came to visit yesterday and brought me some spaghetti sauce which now awaits me in the freezer. It was so nice to see her and have a chat.

I must thank everyone who has been so very kind! Cards and visits and meals and most especially prayers from around the world.

My wind chimes, which I am so enamored of, bring to mind the lesson of both wind chimes and prayers. I always carefully check a wind chime before purchase. No clunkety-clunk, no tinny ugliness for my wind chimes. They must be a sound of pure musicality and loveliness. They resonate on the air as if they were a fragrance left behind by fresh, lovely flowers. I have 2 on my front porch, and 3 on my back porch. Each time I pass them I chime them so as to hear them first ringing brightly then lingering on the air, sweet reminders of the sound they make reluctant to leave their presence unremembered. Those are what prayers are like to me, as well. And my sweet friends and family who pray for me, you lift my name up before God Almighty and keep it there, sweetly lingering in His presence, a loving reminder for His blessings to pour on me, to heal me, to calm and strengthen me, to lift me to His Blessed presence.

Please keep praying for me, I do value it and feel it. I am ever grateful for your kind prayers.

And I pray for you each in return, lifting you in song like melody to shimmer in the air before the eyes of the Almighty.

love to all

Round 5

I went for Chemo cocktail infusion round 5 on Thursday. Round 5!! Only one left - thank goodness!

I was fairly well rested as I took the xanax as per my previous post, so the infusion itself was not too bad. And super bonus for me - I only felt mildly woozy instead of that awful so called "high."

Friday also went pretty well until the evening. It seems as if your digestive track just stops working. I was hungry and had lunch (the very delicious Chick-Fil-A Grilled chicken and fruit salad - I'm telling you it is FABULOUS!!) and that was fine. Dinner I was hungry too but only ate half of a hamburger and half of a baked potato and had to stop. The nausea had begun to build.

Disgusting long story short - about an hour or so later - contents ejected violently upward. Repeatedly. My throat still hurts and I was fighting my own saliva being too much for me to handle all night long. I feel a little better this morning. Tired, not rested at all - it IS kind of hard to sleep when you feel that way and besides I have to take a prescription every 6 hours which kind of cuts your day into strange pieces...

So I had a cup of weak tea, 3 bites of banana, and a tapioca this morning. The tapioca I ate half of, put back in fridge and ate the other 1/2 about 30 minutes later. Trying to hydrate and I know I am going to have to really watch my energy level today!!!

On the positive - oh my friends - this is a day above ground and those are always good, good, GREAT!!

Just wanted to let you know I am alive and kicking, fighting like a girl as rj has directed me!!!

love to all