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!!!

I'm Still Here... I think?

After careful consideration, and I might add an enormous amount of uncontrollable pain, I have opted for conventional methods.  There are just too many success stories out there with conventional medicine.  I want to be one of those success stories.  I choose to fight with chemotherapy.  The side effects this time don't seem to be as chronic as it was the first time.  I am considerably more tired this time around,  although I was sick for a while and this could be a side effect from the cold/flu I had in conjunction with the chemotherapy.

For me to get chemo, it required a move to the north.  Way way up north.  Wyoming to be exact.  Land of 'me hunter... You Jane!'  One can definitely tell when it's hunting season here.  The men, and some women, dress in camouflage.  Right now I'm surrounded by enormous mounds of snow.  The next big 'event' is the Snowmobile competitions.  One must really enjoy winter sports living in the northern regions such as here.  I'm thinking I'll be the lounge bunny.  Inside nice and warm, watching everyone else out there in the cold.  Reading is a GREAT sport!!  he he he...


Now, the question is, did this  have anything to do with my faith?  Did I lose my faith?  Nope.  My faith is as strong as it was from day one.  I will say this, my numbers are down considerably.  Is it a result of my faith?  I would say without a doubt.   Is it a result in the homeopathic or alopathic (not sure if I am spelling it correct there) or both? Who knows.  Who cares.  All I know is I am going to continue with what I am doing, one day at time.  My complimentary along with the conventional.

Aloha!!

'Lions and tigers and bears! Oh my!!' Wait, what was that?

We grew up with fairy tales... Cinderella, Snow White, yada yada yada.  The Prince always rode in on his white horse and saved the day.  The white picket fence scenario embedded in our minds as little girls, which when reality reared it's ugly head, showed us was not the case.  There was no prince, white horse or 'happily ever after'.  Once fantasy and reality showed they were on two different planes, which to believe in became a challenge.  So introducing something as 'faith' in a spiritual basis was sometimes seen as a possible 'fantasy' if you will.  Exactly how DO I differentiate between the two?  How do I incorporate believing in a Higher Power, whom I choose to call God, into my daily regiment?  When it's something not seen, felt or heard?

It was put to me in the simplest of forms early in my spiritual walk, if you will.  'You believe when you turn on the light switch the light is going to come on, right?' 'Yes, but that is science.' 'In a sense, yes, but the concept of faith is the same'.  Believing the light will, [here's the pessimist in me...providing the wiring is correct and bulb is good, and power is stored] illuminate.  So how does that apply to my faith? 

The Bible tells me if I have the faith the size of a mustard seed, I can move mountains.  WOW!  That's pretty impressive. Has anybody weighed a mountain lately?  That's pretty dog gone heavy.  Or better yet, seen the size of a mustard seed? But I'm not looking to move mountains, I'm looking to heal my mind body and spirit of all the toxins that harm my being.  Which, I'm pretty sure can be summed up as moving mountains.  And all it takes is faith the size of a mustard seed.  Which are so incredibly small, it's amazing! Hebrews 11:1 tells me "Now faith is the substance of things hoped for, the evidence of things not seen."

When one embarks on how they are going to travel in the journey they did not ask for, ie. being diagnosed with Breast Cancer; they are faced with many choices.  A lot of times, I feel anger, which is derivative of fear of the unknown.  Oh but wait, isn't that what life itself is, unknown? So why should this journey be any different than any other lessons learned in life?  Well, because there's a certain mortality attached to it?  But wait, that's life itself, right?  Who says we are all going to live to be one hundred or so?  As Thoreau states: 'Tomorrow is promised to no one'.  In a sense, I have been given a blessing.  I have been given a time frame on which to chose how to spend my life and how I want that quality of life to entail.  Not all are given that choice.

A.W. Tozer goes on to state "What is overlooked in all this is that faith is good only when it engages truth ...". Ahhhh.. truth!  So there it is, the meat of the matter.  I was told by someone a very long time ago, 'When I share something with you, don't take it as gospel just because I said it, seek for yourself that it is in fact the truth I am telling you.  Question everything, as some will purposely tell you falsely!'  Truer words have never been spoken!

I've been doing my homework.  If I am going to travel down this road, I want the correct road map of the path that will get me to my 'destiny' if you will, with the most informed and practical approach possible. At the same time, I want to stop and smell every flower along the way.  See the beauty in each sunrise and sunset, which by the way, are absolutely breath taking out at sea, along with seeing more stars in the sky at night than one thought possible to occupy such a vast place.

One of my favorite books 'The Greatest Miracle In The World' by Og Mandino sums it up nicely...
http://www.wowzone.com/godmemo.htm.  I think I need to go to a book store and find another copy.  Damnedest thing keeps happening, I always end up giving it away to someone whom I feel at the time really needs to see that they are truly a miracle.  As are you, me and everyone of on the face of the earth.