5 Great Days...Camping for Halloween.

Even with the heavy rain and 35 MPH winds on Friday into Saturday a.m. it was a great trip!
Of course for my family it wouldn't be a complete trip without the rain. Somehow, it would just seem....wrong. To all who know us, this is common knowledge, a joke we laugh about later...even during.
In any case, we all had a blast, and if we can't do that despite the rain, what's the point, anyway? Heheh.
My family always has a great time camping, but the Halloween trip just sort of caps it off...one final party for the season; going out with a bang! Hey, as far as I'm concerned, that is right up my alley when it comes to most things in life.
We all really get into Halloween too. Every year we go with close friends of ours and their family, get side by side campsites, go nutzoid decorating, send the kiddos trick-or-treating, candy for the kids; a couple of drinks for the adults, go cut loose with a bunch of other adults and kids as a DJ pumps some music for a while at the campground pavillion, go hang out and laugh 'til our sides ache around the campfire...
We just have a great time.

But this year was even better than most...
My birthday almost always falls in tandem with this trip, and sometimes through no fault of anyone involved, kind of gets lost in the shuffle a bit.
Not this year.
My dear husband got me a cake from the best bakery in our area, managed to bootleg it into our house without any awareness on my part, and then smuggle it out into the camper without arising any suspicion. Once we got to the campground, he waited until the coast was clear to covertly slink with cake in tow over to our friends' camper, the final hiding spot.
In the meantime, I had spoiled myself the day before with a pumpkin pie (one of my favorites) to bring along on our trip. I jokingly referred to it as my "birthday cake." Little did I know that at that time, Ed was thinking "Oh shit...no it ain't!"
There were several times before we hit the road that it got a little hairy.
Ed laughed after the fact about how whenever he saw an opening to shift the cake's location, I would pop on over to wherever he was for some reason or another. But when he came out with our friends singing Happy Birthday my jaw was on the ground, and then I turned into a blubbering fool.
I had no clue whatsoever.
And that was the first night.
Just five awesome days. Is there anything better than that?
I even forgot about melanoma for a good part of it, and when I didn't, it was just remembering in response to a question someone asked me about how things were going.
I kept it distant from my thoughts as much as possible.
It would not wreck my fun...
At least for now.
Coming home was infinitely harder...
Coming back to reality...
Coming down...
I can feel myself falling; my stomach clenching up, my chest tightening...
STOP!
I refuse to go there.
Not today. For now, I will dream of better things; a brighter reality with only great possibilities.
This past trip cannot be the last. The dark cloud of fear won't blacken my mood if I don't allow it.
For today, I will dwell in all that was and is amazing...soak it up and enjoy it for all it's worth.

Being Brave, Positive, and Strong

I stand together with several of my fellow melanoma patients on this one: I am sick and tired of having to constantly be brave, positive and strong. It is downright impossible to maintain non-stop.
This has come up a couple of times lately on MPIP, and in the blogs of other melanoma patients, and I have to cheer them on for their openness and honesty.
I get worn out, frazzled and just plain bombed outta my wits at the sheer prospect of having to constantly project this image of the courageous, strong and inspiring cancer patient. Don't get me wrong; it is a dubious honor..one that in most cases, I do want to live up to...just damned hard to keep carrying it on and on from day to day....We do what we have to do to go on LIVING. Not a one of us chose of our own free will to enter into this "battle" that, in all reality, we may not win.

Will I do what I have to do? Will I fight? In a word: YES. It goes without saying that life is worth fighting for. But are there times that I want to go screaming and running for the hills like my hair is on fire? Definitely.

It is just this belief that our culture has to never be weak, have constant strength and always be upbeat and positive in the face of adversity. Never is this more apparent than with the expectations put on cancer patients. It is this belief that gets under my skin like a bad case of hives. This need to never crumble, come unglued...or even let anyone see us cry.

In reality, where I prefer to dwell, these are the things that make each of us more human, vulnerable....real. In the name of all that is Sacred and Holy, why do we as people feel the compulsion to have to live up to a constantly perfect standard set by a cultural belief? It is unforgiving, frustrating and unfair.

Am I brave? Most days I don't feel like it.
I was blindsided; backed into a corner and had the rug pulled out from under me on several occasions. Melanoma does that to too many of us.
Many days I am screaming inside.
Since melanoma, I am a scatterbrain who would so often forget my head if it wasn't attached.
I wake up each day in a cloud of doubt, fear and insecurity about whatever the future may hold for me.
Some days, I wonder whether or not I should seriously consider being put on a stiff dose of mood enhancing, anxiety reducing medications.
So many days, being brave is just plain hard work.

Some days we have to face the reality of the fear. Fear of the unknown. This is a completely human fear. Our need to have absolute answers to whatever questions we have, and at times, to go literally batshit when there just aren't any answers.

The living in limbo state that melanoma can induce can erode the mind and fray the nerves of most anyone....I know it has cooked my circuits good quite a few times.

As cancer patients we know that to go on LIVING, we have to reframe our thinking. Train ourselves to live moment to moment; to live fully within the moment we are in right now. To think too far ahead brings with it a certain level of insanity.
Living moment to moment, never knowing what to expect could potentially bring about a person's undoing....But on the flipside, it can bring freedom.
Okay...more than enough rambling from me for now :)

What a day

Well...I had one heckuva looong day today. Had to be at the hospital for all the pre-op/pre-admission testing at 10:20 this morning. Let me just tell you, that was such an experience...a frustrating one. Stuck in purgatory for more than three hours while I waited to be herded like a cow on to the next station where I would be poked and prodded...gotten ready for this surgery coming up. Waited over an hour before my name was even called out.

The woman that sat next to my husband and I had us in stitches for a good part of the morning, however. She kept huffing and puffing, growling, and grumbling...She had been there since around the same time as we got there. Ultimately, it got to be sort of a joke, albeit sarcastic and riddled with underlying animosity and aggravation over the disorganization of the whole place...I could smell my nerves and they singed and cooked within my skull, the longer the time stretched out; told Ed that I was getting ready to get snappy and surly on someone pretty damn quick. Many of the staff members were skulking around, doing nothing much in particular, all the while, this waiting area was being packed in with more people by the minute....like sardines, we all were.
I said to Ed that pretty soon there would be an uprising among the masses...a mutiny. I could tell that Ed was ready to snap on someone. I joked that I would lodge a complaint with the powers that be...wherever they may be...obviously not there, not this day...I also said to Ed that there would be hell to pay if they were all holed up somewhere on a two hour lunch break while all four hundred of us peons were waiting in suspended time and missing lunch; told him he ought to go get a stinky ol' Italian hoagie and smell up the joint good for 'em...

Anyway, 2:oo came and went, and we were free at last to move on. Had to choke down lunch and make up for all the missed sodas (I am a hard core soda addict...gotta have some vices) before 2:30 or so, when I had to be up to see the surgeon to discuss the surgery more...and of course, and at long last, to get my scan results!

The GREAT news first: My brain MRI was clear (wasn't too worried about that one), and for the most part, the CT was clear. A couple of little nodules showed up in my lungs, but the doc said that they were "non-specific"...Another CT is recommended in 3 months or so to make sure they don't grow or multiply. Aside from that...ALL CLEAR!! I am still, right now at least, a stage IIIb. I am so relieved...and of course, ecstatic.

As for the isolated limb perfusion, the date has been bumped up. I will have to go in on November 3rd now...Still really scared of the complications of this whole deal, but after I read that path report from the stinkin' subQ that was removed, all I could think was that I had to make sure that I stay a stage III...and this is the only way I can think of right now to give me the best odds at that. That stinkin' ol' subQ was within 1 millimeter of the deep margin. All the way down to the muscle fascia...and there was lymphovascular invasion...That just sounded bad to me, even before he explained it better. And of course, I cannot forget the little babies that this sucker spawned after it took up residence in my upper thigh...

Also...found out that the doc will have to remove the deeper lymph nodes; the ones higher up into my abdomen. He will be going in there to access those vessels for the perfusion, and to be safe, he is going to pluck out a few more nodes...Man. Another thing to wait with baited breath for the results....

Aaahhh, well. Guess it is going to be a hectic as hell couple of weeks ahead...I do know one thing though. I will NOT be in the hospital on my birthday this coming Wednesday. We will be hitting the road for our Halloween Camping trip. I plan on having a blast with my family and friends, knowing that this whole mess will NOT stop me from that goal..and maybe even bust out a couple of drinks in the evening around the campfire! AFter the kiddos are in bed of course ;)

My husband

To my husband, Ed; At the risk of sounding cheesy and too sappy, you are my knight, my rock, my better half, my soul mate...You amaze me.
You have listened tirelessly to all my worries, fears...dreams.
All the while, having fears and worries of your own, yet only rarely making them known. You fix things for a living...it is your job; something you have an innate knowledge of how to do. On some levels, it must drive you literally crazy not to be able to fix this...Yet you don't let it show if it does...
You are always giving of yourself, helping others, being there for them, as you have been there every time for me...Your strength, support, and constant caring have meant more than the world to me since we came upon this detour in the road together in 2003.

Caregivers face a battle of their own; unique in the way that only the loved one of a cancer patient can experience.
Caregivers are the true heroes; their strength, their compassion, their support despite all odds, and above all else, their constant love...
Keeping their own worries so close, guarded and separated from ours as patients...always putting us first. We know, in reality, they all need support too, maybe even more than we do; a shoulder to lean on and just let it all out.
All of them have never stopped inspiring and amazing me, and my husband is no exeption.

Ed, I hope with all my heart that this is just a hurdle; a bump in that long road we will travel together into old age. I pray that I will be right there by your side, holding your hand as we go charging ahead into the future. I know that no matter what we come up against, I can face it with you right by my side; I can face anything.

Scanxiety

Scan time is upon me once again. Tomorrow I have to hit the imaging place at 7:45 in the morning to have an MRI of my brain and finally get to experience what this cage like contraption will feel like on my skull, in addition to being holed up in a tube for an hour listening to all manner of banging, buzzing, ringing, etc. If I am lucky, they will give me the big ear muff sized headphones that will, I am sure, be blasting some sleepy, draggy easy listening music (that sounds more like nails on a chalkboard to me instead of inducing a relaxed state of mind) into my auditory canals...Well, maybe not with the brain MRI...not sure as I have not had the pleasure of having one of them done before now....
Then when that is all done, it is back out to the waiting area to drink some delectable oral contrast fluid for the CT scan; always look forward to drinking that down...my mouth is watering just thinking about that bitter, supposed to be orange flavored--but not!- substance just oozing down my throat...NOT!! Most of the time I just slam both huge cups of that nasty concoction....Well, okay...maybe the second HUGE cup isn't quite as easy to choke down in a quick series of gulps...
I must say I am a whole magnitude of order more edgy about this batch of scans than any other set I have had up to this date in time...
Anyway, I must confess, that I am rather edgy today to say the least...and wishing for something to mellow out my fried nerves...
Okay...guess there is my vent for the day.

Freedom of the mind

I have always loved to draw...I believe my mother has pictures that I drew when I was as small as two years old. That particular picture is of a cow, if I remember correctly, and was quite frightening...
Drawing can get me in a zone...get my mind focused only on the subject of my drawing or painting...and off of other things...Kind of liberating...
The pic of my sister's basset hound, Abby, as a puppy was my most recent (last spring), and before that, it was hummingbirds...Melanoma, and all the incredible people fighting it inspired me to draw them...
Some of these other pictures date back as far as 15 or more years ago, like the one of my sis (above) when we were both little...Drew the pic when I was about 18 though...
Just realized I hadn't done any artwork lately....Figured it was far past time for me to pick up the pencils and paints again.....

A Sad time on MPIP...

Thinking so much about all the warriors lost to this disease...
It has been a sad time on MPIP lately...hell, there have always been sad times; seems to move in cycles and waves...but it always seems so many are lost in a short period of time...
Kim and Ron, I know niether of you will ever be forgotten...And to all that have passed before; too many to count in even just the short 3 years I have visited MPIP. Who woulda thought that such a massive amount of amazing people would all come together on an internet BB, all with one common thread: this nasty monster called melanoma.
To all the warriors who lost their fight with melanoma, you will not be forgotten...your light will shine on: Shauna, Lesley, Lyn, UKSue, Barbara, Imo, Jillian, you are just some of many....TOO damn many....
mpip.org

Life

Just too many thoughts rolling around in my skull lately, I guess...Got to thinking about how I need to get on the phone with that lawyer and stop putting off what I really need to deal with right now: Getting a will drawn up. I guess some of these thoughts have been rolling around simply because of fear and anxiety over a very uncertain future and whatever it may bring....Or maybe it is just that I have to have a CT scan and an MRI of the brain done on Tuesday to make sure the melanoma really is only in my leg...Any damn way..just a time for spazzing out, I guess.

Worrying about my beautiful girl too...The school counselor called to speak with me about the conversation she had with her yesterday...It concerned a note that my daughter was caught passing in class to a friend of her's...

She is scared that I have to have another surgery...She is angry that the treatments I had done did NOT get rid of the melanoma...She is scared...and that breaks my heart...My husband and my son are scared too, they just seem better able to hide it...Maybe it is a trait that is only evident in males...who knows?

I know I just feel raw white hot panic at the sheer prospect of having to confront the very real threat that melanoma brings to my mortality...Something no person should have to face, much less someone young, with young children and a young husband who had dreams of a long future together...It also goes without saying that I hate even more than the fact I have to deal with all this, the very real fact that my family...my children have to...I worry more for them, obviously, than I do for myself....

Getting a little angry with myself today (to say the least) because I feel this compulsion to whine and gripe at the moment....

Weeelll....let me just shut that down right now!!

I will seek out what is beautiful around me...I will think about how blessed I have already been in this life no matter what lies ahead for me...I have already given melanoma too much today....

Life, for all the pain and angst we can experience at different points within it, is beautiful...and more than worth fighting for with all the power that we have!

Making every second count

I get to thinking about this all the time....and not just since being diagnosed with melanoma, just to a higher degree since then; the importance of infusing life with as much fun as humanly possible while we are in it! We took an incredible trip to Niagara Falls this past summer that I will remember for a lifetime, however long God has in store for me...I am sure it was unforgettable on so many levels for my husband and kids too...Life should be punctuated by moments and periods that are unforgettable and can at times, take our breath away.... Whatever fate has in store for me, I know I am hellbent on having a blast in this LIFE, and I will have to be dragged kicking and screaming out of it....
I can't help but think of one of my closest friends who I have been fortunate enough to 'meet' since this nasty, yet at times, amazing and surprising trip called melanoma began....She created a list of things she just has to do before she "drops dead"...I loved and laughed (for only the best reasons) about the idea, and decided to create one of my own.....
Things to Do Before I Drop Dead LIst:
In no particular order, Here are a few of the things I would love to do at least once in my lifetime:
1. Make it to one of the MPIP bashes so I can get the chance to meet so many of the amazing people that I have come to 'know' and grow close to through posting on MPIP.
2. Visit Disney World; believe it or not, for the first time in my own life, but even more, to see firsthand, the way it lights up my kids' eyes....
3. Visit the Grand Canyon.
4. Go on as many rollercoasters as I can (while still retaining some level of sanity) with my rollercoaster loving husband at Cedar Point Ohio.
5. Go back to Maine, where I was born, and camp there with my family....
As I mentioned, these are just a few of many things I would love to do during my life....
Some things go without saying whenever you are faced with a potentially terminal illness or disease, but are obviously unique to each person:
Watch my kids grow up...See my daughter all dressed up for her prom; listen to my son's voice change as he grows to be as big as his daddy; watch them both get married; hold grandchildren in my arms....Grow old with my husband.....Just some thoughts...
And too many dreams to count....

My overly addled brain...

Today I feel like I am hanging on to a quickly unravelling rope...my nerves are fried from worrying too much...
Got a call from one of my surgeon's assistants (the surgery coordinator) to ask what seemed at the time, like a somewhat off the wall question: "Have you spoken with the doctor in the last couple of days?" I replied that I had not spoken with him since the day after my last appointment, about a week or so ago. Then he asked "SO you haven't spoken with him since the surgery date was set up?"...I said Nope, I hadn't. The assistant then informed me that he was pretty certain that my surgeon did not want to wait until November 8th to to the perfusion, that he wanted to do it in the next couple of weeks. He then asked what the reason was for the holdup. I told him that I requested not to have the surgery done over my birthday, and informed him that my family had a trip planned for six months now for Halloween. He then made it a point to say, "Ma'am, I don't think you understand how serious your condition is right now. The doctor believes with the magnitude of the situation you are in, and with your being a young woman, you should get this done sooner rather than later. I am sure he does not want to wait until NOvember."
Let me just start out by hollering, "I don't want to be chained to a hospital bed on my 35th birthday...Yes, I realize the seriousness of the predicament I am in, and most people around me have already begun to think me half past whacked in the head, but I digress....
I do believe that my doc will have to explain to me like I am feeble minded, why another week or so to wait for this procedure is detrimental to my case...I am definitely open there...and of course, if he tells me something so devastating that it gets my nerves any more sizzled than they already are....I will jump on it with full enthusiasm...Well, I guess not, this is a perfusion we are talking about...there is no way to be "enthusiastic" about that no matter how much candy coating is obscuring the reality. But I will jump on it with some level of dread...
I am just so reluctant to give this trip up; fun being so important to me...LIVING fully, before being laid up for a bit, but even moreso, I hate the prospect of my family having to give it up...
Basically, it is safe to say, I am WIGGIN' OUT...big time!

The "magnitude" of my situation?....UGH!

Aaahh, well....we gotta do what we gotta do...and when all is said and done, what I want most is to kick this monster called melanoma square in the ass!

A Melanoma Journey

So many of my fellow melanoma warriors have created blogs, so I figured, What the hell? I might as well try it myself....Seems like a pretty cool way of getting some of my thoughts out and keeping them from overcrowding my brain...The bumpy, scary, and sometimes heartbreaking rollercoaster ride that is known as melanoma can do that--overburden our minds with too much stress and far too many thoughts not to get some of them out...Technically speaking, I began my journey with melanoma back in 2001, only I was blissfully unaware of it, since I was misdiagnosed. The ugly mole was shaved off and the slides were misread as "not significantly atypical enough" to be called dysplastic.
In any case, it grew right back, and two years later, in 2003, I was blindsided with the news that I now had melanoma, a type of skin cancer that can be fatal. Since then, the longest I have been NED (melanoma speak for no evidence of disease) has been for at most, 16 months. My first recurrence sent me onward and upward from stage Ib to stage IIIb. The recurrence came in the form of an in transit metastasis right next to the wide excision scar from where my original melanoma was removed. I began a course of two treatments, GM-CSF along with Temodar, a type of chemo. A month after finishing the GM-CSF and two months after the Temodar, another recurrence popped up...a subcutaneous/in-transit metastasis that was only about an inch below where my nodes were taken out at the same time as the first recurrence.
This crap just keeps deciding to rear its ugly, nasty ol' head....
At least as far as I know right now, only in my left leg...
Now, I face what is so far the scariest treatment plan yet...for me, at least: Isolated Limb Perfusion. A tourniquet will be applied to my uppermost leg; a couple of major blood vessels will be hooked onto a heart lung bypass machine in order to circulate ten times the lethal dose of a chemo agent known as Melphalan; at the same time, the leg is heated up to about 104 degrees, since apparently, it makes the chemo more effective. This is done for approximately an hour and a half before being flushed out of the leg with clean blood...All this in the hopes of obliterating this beast once and for all...I have to hope for this above all else...
Frankly, however much I hate to admit it, this procedure scares the livin' shit outta me...Yet for as much as it does, the melanoma is truly starting to scare me more...
Ahhhh, well...We will see....