"I'll Take What It's NOT over What It Is...ANY DAY!!"

Today is April 1st.  April Fools Day.  I realize that today is customary for jokes... but can you say 'Partial REMISSION? My tumor markers are in normal range.  Now we still have to get my CA 27/29 tests back and they send out for that in Northern California, but the last time it was checked it was 65.  Closer to normal range.  As of today no more Taxol and just a few more treatments of Herceptin and Zometa and now back  my aromatase inhibitor by pill.  I've been waiting to be able to go back on that for a while.  We're keeping an eye on my neck now while I am no longer taking Taxol to make sure it doesn't get out of hand like it did last Thanksgiving.  While sitting at my Doctor's desk looking at my CT Scan, he had the picture of my neck pulled up, and said "I don't know what that is, but it's not cancer."  I said "I'll take what it's not  over what it is any day!" The cancer that appeared in my bones is not present at this time, and what was there he is under the impression that it's directly from the Zometa, as it sometimes appears on Scans as just that. It did not alarm him, it's not going to alarm me. I am beating Stage IV Breast Cancer!!  My God is BIG!  BIG!!  BIG!!!

Now what was it I said I wanted to do... well I've decided to create an 'Un-Bucket List'... a way of eliminating what I won't be able to do... for what ever reason, some WAY beyond my control.  First on the list is get a ride on the back of a Cop's Harley.  I've been in the back of a cop CAR, why not the back of a cop Harley?  Never gonna happen.  First, it's forbidden.  They are not allowed to transport anybody... believe me, I asked!  :D  And he was cute too... he he he!!  Second, the hogs are not equipped to ride a second passenger, they're one seaters.  :( Out of my control, I can accept that!

Second... see the Eiffel Tower and the Mona Lisa.  Now setting aside the minor bump in the road labeled cost, I could not get my CDL renewed because of all my marriages and divorces (4) and the fact that my documents that I do have (post 9-11) don't size up for the Department of Highway... you think they are seriously going to give me a passport?  And getting the documents would involve going to four different states where the divorces where filed, by myself and my EX's.  One of them being Alaska.  That's a lot of driving... ~thinks~  wait... I have time... maybe I'll put this on the 'other' list...

There's another, that brought up the whole idea of the 'Un-Bucket List' and for the life of me, right now I cannot think of what it was... chemo brain wins this one!  But have you now fear, I'll keep trying to remember, making my brain to recall what it was!

I was thinking the other night, I don't have my muse anymore.  Not, I say, that I even knew what my muse was before, but it was clear that the last couple of days, there was evidence of one reappearing.  Today I had no doubt, that my muse, which by the way, doesn't always have to be (or at least in my opinion) a human being.  To me, a muse can be something like being in the process of beating cancer!  Stage IV Cancer no less!  If that's not a muse, I don't know what is.  A muse is something that ignites you, enlightening you and provides the words that all fall into place!  Riding down the pass today on the bus, it appeared to me like this was my first trip on the pass... everything looked refreshingly new and different.  I saw a waterfall and practically jumped out of my seat (means that white stuff is melting up top!)  Clearly, today, I was seeing the world in which I live through different colored glasses.

So... that being said... I've set a date.  September 3rd.  After I have participated in the Relay For Life here in Star Valley, (which now is sort of a closing ceremony for me) I am on the road.  Kentucky bound, but stopping all along the way to stop and smell the roses... for I have all the time in the world!

Aloha!

Friends...

Has lately become a term that is used at random, if you will.  One goes to any particular site, and is invited to add someone to their 'friends', this person usually being a complete and total stranger, by the power of a click, they are instantly 'friends'.  But what is a friend, really?


I have been online now for about ten, twelve years, give or take.  Dating sites, social network sites, blogging, you name it, I have been there.  Along the way in my travels through the wonderful world wide web, I have met some pretty incredible people.  Once was the time when our own individual social circle meant the geographical area in which one lived.  Not any more, I am so glad to say. Once was the time when the information super highway meant a trip to the library.  Not anymore.  


I am a traveler.  Always have been, always will be.  Maybe you could say there's a little 'Gypsy' in me.  Whether I am traveling across country or via web, I'm on the go.  And along the way, some pretty special people have come into my life.  At the time, one may not know or realize the impact one has on another person's life, what their friendship means to them.  


I recently came in contact with friends I had made on a site I blogged on several years ago.  I had been there for quite a while, and made quite a few friends.  See, the thing is, I get bored easily.  With living situations, with mates, with environment, right now my boredom is stemmed from being snowed in with 20' walls of snow around me.  With the site I was blogging on, I simply got bored with it.  With the site and blogging, not with the friends I had made there.  However, when I closed off my profile there, I in turn, closed out the friends I had made.  


So I ask, what is a friend?  Looking at all the definitions and the Wikipedia there are pages and pages of what a 'friend' is.  To me, it's someone who knows me, knows my quirks, good points and bad, yet still accepts me as who I am.  So what does that have to do with my blog and my journey now you may ask?  (Or you may not, you may be one of my friends reading this and knows exactly where I am going with this...) 


Lately I have been struggling.  With just about everything.  My will, my willpower, my intentions... my journey itself.  I felt as if I were getting lost in the emptiness that surrounds  me.  Lost in the definition of what lies ahead for me.  I mean really, how does one handle sitting outside death's door?  Yes, a certain degree of faith is involved.  But I'm talking deeper than that... the 'knowing'. Or not knowing, but knowing it's just around the corner if you will... I'm getting lost right now trying to put it into words.  It's not easy to convey.  


But recently, in the last few weeks, I have been one by one, been reestablishing contact with some of my friends from this site I was on, and it's giving me new hope, no, not hope, courage.  Yes, that's it...courage.  When something as devastating as cancer comes along, and takes away one's vision, it takes a friend to bring it back.  For that, I thank my friends who daily and constantly encourage me to fight this fight!

Cancer Is Not a Joke

When I got the phone call that early August morning confirming my biopsy was positive and that I had Invasive Ductal Carcinoma, my whole world went numb, and I sat in silence for the rest of the morning. What now?  Surgery?  A mastectomy?  Chemotherapy? Radiation?  The questions were endless, and my mind couldn't quite grasp what was going on, even though prior to, I already has a suspicion it was going to be positive.  Was I going to die was the first and foremost at the very top question.  Of course I still had to undergo tests to find out what stage I was.  Bone scan, PET CT, Muga to see if my heart was going to be strong enough to handle the rough road I was in store for.  The phone call informing me I was Stage IV, of which there is no cure, only treatments to better quality of life and try to prolong the inevitable.  It felt like I had been punched in the solar plexis.  The air immediately left my lungs and couldn't breath. My whole world was shattered in a matter of three weeks, the worst possible news one could ever get in their life.  My immediate thought was 'I am going to die'.  How soon was the question that followed.  Would there be a great deal of pain, and let me assure you, 1-10 for pain levels just don't factor in when it comes to identifying the level of pain sometimes associated with Cancer.  That was August 27, 2009.

Since then I have been undergoing chemotherapy to somewhat aggressively treat the cancer. I actually had a Doctor look me straight in the eyes and tell me I was going to die from this disease.  Thanks for the vote of confidence Doc... seriously. I have lost all my hair, twice.  My nice long long eye lashes that made my eyes look like saucers have all disappeared. I have now what I call raccoon eyes, dark and sullen looking.  Concealer can only do so much.  I look at the gal in the glass looking back and wonder who are you, I don't know you.  I've never seen you before.  I want the old Leilani back.  And I want her back now!!  

I ended up going into the hospital for a week in December for Pneumonia.  That brought on a onslaught of 'what if's', with my family being so far away, and unable to get to me where I live now, burried in mountains and ten foot walls of snow ( I have come to the painful conclusion I am no snow bunny!) But I felt alone and scared. 

So far this year I have lost two chemo buddies from treatment and found out today a fellow blogger passed quietly last month.  You see that empty chair and can't help but wonder am I next?  I have radically changed my diet, which really didn't need that much revamping to begin with, but I have added some cancer fighting foods to help my body fight this better.  At one time they had me on more pills I thought was humanly impossible for one person to actually keep track of and take on a regular basis.  Penicillin move over, Xanax is the new wonder drug.  Keeps me on a level plain, and the panic attacks to a minimum.  And trust me, when dealing with Stage IV Metastatic Breast cancer, there are panic attacks, especially when you hear someone lost the fight.

Here's some facts about cancer JUST with women, not to mention all the other devistating cancers out there taking lives on a DAILY basis.

* Every year, there are more than 41,100 cases of uterine cancer, and more than 7,400 deaths from the disease.

*  There are two types of cervical cancer, squamous cell cancer of the cervix (SCC) and adenocarcinoma of the cervix, 

    with SCC representing about 90% of cases. Every year, more than 11,070 new cases of invasive cervical cancer 

    and 3,870 women will die from the disease. 

*  Every year, there are an estimated 22,430 new cases of ovarian cancer and more than 15,280 deaths from the disease.   Ovarian cancer causes more deaths than any other form of cancer of the female reproductive system. Ovarian cancer is the fifth most common cause of death from cancer among women in the United States.

*  Each year there are over 182,000 new cases of invasive breast cancer, and more than 40,000 women die from breast cancer every year. Excluding skin cancers, breast cancer is the most frequently diagnosed cancer in women, and the second leading cause of cancer deaths in women. There are more than 2.5 million breast cancer survivors living in the United States. A woman’s chance of being diagnosed with breast cancer in her lifetime is 1 out of 8.  Men you are capable of being diagnosed with breast cancer as well.  Despite common misconceptions, more than 2,000 men are also diagnosed with breast cancer each year. Of those, approximately 450 will die from the disease.

That is why when I read that Conan O'Brien made a callous and uncaring remark about being asked to host the EIF's Womens Cancer Research Foundation 'An Unforgettable Evening'  and I quote " Hilarious host Conan O'Brien said, "Tom Hanks and Rita Wilson asked me to host this event and I thought wow, cancer, the jokes just write themselves." Unbelievable that someone can be so uncaring, and his picture was taken with Martin Short, who  accepted the Courage Award on behalf of his wife Nancy, who tragically passed away from ovarian cancer in August.   He lost his mother I believe when he was 12 to cancer as well.  

I'm in an rage about his carlessness and foolish statement.  I am writing anybody and everybody I can think of from Oprah to Ellen, Natalie Cole, the National Ambassador, trying to get the point that cancer is not funny, it's not a joke, does not write it's on jokes, it takes lives.  Horribly and tragically, leaving behind a void in the loved ones lives.  I'm trying to get the point to Hollywood that there's a line in the sand when it comes to what's funny to joke about and what's not.  Cancer clearly falls under the ladder.  It is no joking matter.  

Of all the funding that is raised to fight Breast Cancer only 3% goes to Metastatic Breast Cancer, and mainly for quality of life, not trying to find a cure for us... yet clearly 30% of us are Stage IV.  Of which there is no cure.  Our diagnosis is a death sentence.  For some it comes early on, one day seemingly healthy, the next day... gone.  

Have you been affected by cancer, of any type?  Do you know someone who lost the fight or is currently fighting, or even a survivor?  Or know someone who knows someone?  Nine out of ten of you will probably answer yes... I am asking you to join me in my fight to get this message out.  Write letters to the stations, to sponsors, the celebrities asking for their help in getting this message out, the message that there is a line in the sand when it comes to what's funny to joke about and what's not. Cancer, of any type, is most definitely not.  Now some of who are dealing with it sometimes use humor to help us fight this battle, but that is OUR choice .  Let's not let Conan get away with making uncaring statements like that or any other comedian who thinks cancer is a joking matter.  It does not write it's own jokes, it kills.  

This post is dedicated to Daria... may you rest in peace my dear and be free from the pain and suffering. You will be missed.

Godspeed. 

Army of Women

About a week or two ago I received an email about a study being conducted at Stanford University regarding sleep and the effects of stress with Metastatic Breast Cancer.  They are still looking for more women.  Here is the link to the web site and I am going to try to copy and paste the link to sign up for the study.

http://www.armyofwomen.org/  (Link to sign up for Army of Women)


Too much stress and not enough sleep are familiar to many women with breast cancer. The question is whether they might lead to recurrence by affecting your immune system. That is what a group of researchers at Stanford University want to find out. They are studying the effect that stress and sleep-related hormones may have on the immune system and cancer progression.


If you are a woman who has metastatic or recurrent breast cancer and you might be interested in participating in this study...please read on.
Even if this study isn't right for you, please pass it on! PLEASE REMEMBER, if you don't fit the criteria for this study, there are MANY, MANY more upcoming studies and one of these studies might need someone just like you!!

What's the study about?
The purpose of this study is to learn about the relationships between psychological factors such as stress, quality of sleep, hormones, immunity, and cancer progression. This study will enroll 125 women, and at this time needs up to 20 more.  

What's involved?
If you join the Stress and Breast Cancer study, you will be asked to answer questions about your medical history and health-related behaviors. You will also participate in a 2-week at-home sleep data collection, which includes keeping a sleep log, wearing a watch-like device that will assess your activity and sleep, and two nights of more detailed sleep recording. Finally, you will be asked to stay at Stanford Hospital for 28 hours (2 days and 1 night)where your sleep will be assessed, and you will be asked to provide blood samples through an IV, saliva samples, and complete a psychological assessment including interviews and questionnaires.

If you do not live within 1 to 2 hours of Stanford University, in addition to the 2-week at-home sleep data collection, you will be asked to travel to Palo Alto, California for 4 days and 3 nights. If needed, hotel accommodations and travel to and from the airport will be provided.

Who is conducting the study?
David Spiegel, M.D., Professor and Associate Chair of Psychiatry & Behavioral Sciences atStanford University School of Medicine

Where?
Stanford University, Stanford, CA 




You can join the Stress and Breast Cancer study if you match
 ALL of these MAIN categories: 
-You are a woman between 45 and 75
-You have metastatic or recurrent breast cancer
-You live in the United States
-You are willing to travel to Stanford University in Palo Alto, 
California for 
2 days and 1 night, if you live within 1 to 2 hours of the University
 ; or 4 days and 3 nights if you live farther away.
-You have not had another cancer in the past 10 years other than 
breast cancer, skin cancer, or in situ cancer of the cervix


here is the UTL for signing up...  

http://mailing.armyofwomen.org/rd/9z1zm1o2f0f09ag3al0pum0lcptd0f8e9i5i1pq0d88

Three Months

That's how long it's been since I quit smoking. And I feel great.  Wait a minute, actually I think it's going on four now. Well I sort of feel great.  No, actually I don't feel great at all.  I have been fighting this cold/flu slash what ever this bug is... one thing I'm NOT doing though (thankfully since I am NOT smoking) is coughing.  But yea for me.... I'm a NON SMOKER!!!  Wooo Hoooo!!!!

My Doctor has me on Taxol every week, Herceptin every week and Zometa once a month.  Now, finally I can say the pain is under control.  A couple of months ago, it was far from that.

This past October my lymph nodes in my neck and throat and behind my ears were severely swollen.  The pain was off the hook.  I couldn't raise my left arm higher than my shoulder.  When I called my doctor for some pain pills I was told they didn't think it was related to the cancer.  "Are you freaking kidding me?" I thought! What DO you think it's related to, my cousin Sam? I was practically in tears talking to them about the pain and trying to convey to them the level of my pain.  This was pretty much the first time I've experienced pain to this degree, and I wasn't handling it to well.  I was given a minimal amount of pain pills which I had to ration off until I could get in and have them look at the extent of what was going on and deal with it from that point on.

By Thanksgiving, I had pain pills, but it just wasn't getting the pain under control.  Thanksgiving weekend is pretty much a fog.  I ended up being taken to the hospital and admitted for pneumonia.  I remained in the hospital for a week.  Now I find myself exhausted.  I've been out of the hospital now for over a month, and am still feeling the effect of the illness.  Pneumonia is no joke and nothing to kid around with.  My energy level usually plummets by early evening.  New Years Eve it took all I had just to stay awake past eight o'clock. This is so not like me.  I'm usually the party animal, ringing in the new year all night long! Not this kid, not this year. The week in the hospital we were able to get the pain under control, and after a few weeks of the Taxol, the swelling had gone down in the lymph nodes and the pain went from ten plus to about two or three.  Much better...



Scheduling is being changed from every week to every third week.  It'll be nice to have two weeks off, where I am not riding the commuter bus home.  The down side to this is  being stuck in treatment now for a four or five hour stretch.  This should be interesting.  Me sitting still for that long of a stretch.

Time will tell...


Now the really good news is when they did the bone scan, the cancer did not present where it first did when I was staged.  There appeared to be some on my ribs they weren't sure about,  but none anymore in my lower back!  God you are so incredibly awesome!!!  Thank you Lord, I give you all the praise and glory!!!