Do you remember Tuesday December 2nd, 2003?

No? Neither do I. But I certainly wish that I did. Of course I did not know it then, but Tuesday, December 2, 2003 was going to be an important day for me.  Looking back I can't remember a single thing that I did on that particular day. If I had known that this would be the last day that I would ever be pain-free, the last day that I would be young and healthy, the last day in my life before I had to face my own mortality...had I known all of that, I'm sure I would have done something special on that day. I would have used the day wisely. But I don't remember one single thing about that day.  The date, however, is forever etched in my mind.

The following day, Wednesday, December 3, 2003, is a day I do recall.  This is the day my life changed dramatically.  From this day forward nothing would ever be the same.

Jump forward until today as I write this entry, it is September 2011.  A lot of time has passed since December 2003. A lot of pain, a lot of grief, and a lot of fear.  But also a lot of laughter, determination, and joy.  It's time for me to recommence blogging.  I'm going to be reflecting over everything that began on that fateful day in December 2003 and my journey since then. Some of what I will write be difficult for some people to read because at times it will be painful, all of it will be very honest, but know too that some of it will be joyful and will indeed make you laugh.

If you traveled with me on the journey the first time, I welcome you to join me again on another journey.  If you're here for the first time, I welcome you to also join me on this endeavor. Your comments are welcome so if you are moved to comment, please do so.

Before I begin taking this second journey through my life since cancer, exploring how things changed when I was diagnosed, and what I went through, let me first set the scene (only in summary form) leading up to the beginning of that roller coaster ride.

Prologue

Born and raised in Australia I moved to the US in 1997. I was married to an American and although things were very difficult making that kind of move away from all of my friends, family,  career, study path, etc., since I'm a very determined, strong-willed, independent person, I never doubted that I could mange that type of life change. Of course I set about making friends and forging a life here, and for a while that was okay.

I'll skip all the irrelevant in-between stuff that simply isn't pertinent to the story I wish to tell.  But ultimately there came a point in my life when I was faced with my (then) husband being, well,  less than loyal let's just say. This was not the first offense, but there were discussions and it was resolved, or so I thought, and we moved on. I had however, made it clear that if this were to happen again it would be the end of our relationship. I'm nothing if not true to my word. Three strikes you're out. And so, divorce proceedings began. That whole story could be a book in unto itself, but as I said, it isn't relevant to the story I am documenting here.  Also I'm actually a friend of, and on very good terms with, both my ex-husband and his new wife.  Dredging up all of that old stuff and posting it here would not benefit anyone.  We are all well beyond that point, and I see no reason to revive it whatsoever.  I have to mention it only so you get the feeling of where I was in my life right before all of this began.

So there I was going through a very emotional, stressful, difficult time.  Of course there's all the usual issues people experience with a divorced.  Why me? What I do wrong? What could I have done differently? Was I not good enough?  The anger, the sadness, the whole complex mess that everybody inevitably goes through at the breakdown of a marriage, or any relationship for that matter.

Perspective, however, is an amazing thing. As soon as I was diagnosed with cancer I assure you, all of the divorce issues were  over and done with. My ex and I were, and still remain, amicably friendly. It's amazing how quickly you can get over things when something worse comes along.

Even before my diagnosis I was doing rather well, for the most part, regarding the recovery from the divorce. I was going out with friends, I was going to the gym all the time, I was extremely healthy, fit, active and happy.  I wasn't interested in dating anybody, I was just interested in enjoying my life,  my friends, and forging out a new life for myself, on my own.  I thought things were going along quite well.

Although I do not recall anything I did on Tuesday, December 2, 2003 I'm sure my day included going to the gym, spending time with my pets, and likely at least talking to some friends. A regular day in the life of a regular person who was recovering from a traumatic end to a marriage, but managing to be quite happy, positive, and completely unaware of what the next day was going to bring.

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Below is my first blog post, written while I was going through the journey I never wanted to take. I am obviously in a very different place physically and emotionally now than I was when I wrote any of these entries.  It will be interesting explore them now, remember what it was like, (not that I could ever forget), but now to be able to see them again, knowing that I survived, knowing what I know now, will I see things with new eyes? Will I wish I had done things differently?  It is all about perspective and my perspective, in fact, my whole life, has changed a great deal since then.

This is the first entry originally posted on my website - www.ancoraimparo.net.  Under the category " I, Phoenix." Named for my steadfast determination to rise from the ashes.

The Beginning

Wednesday December 3, 2003, a day like any other day, or so I thought.  My friend Rob and I, along with Rob's brother and his girlfriend all went to the movies. I had been looking forward to seeing the movie Timeline. It's a 2 hour movie. Unfortunately I didn't get to enjoy that movie because about 5 minutes after we took our seats, I felt pain in my chest, on the left side. At first I thought I had pulled a muscle, but the pain began to increase.

The pain increased to the point that I thought I would need to leave, but I did not want to ruin the movie for anyone so I kept quiet. The pain became so bad I almost told Rob I needed to borrow his car. I thought I could go home, since I live close to the movie theater, and grab a pain killer and come back and enjoy the rest of the movie. But I knew he'd want to know why I wanted to leave and then he'd want to come with me. So, I sat there, in agony.

I missed most of the movie, I was in far too much pain. At the end I thought I may need an ambulance, but of course I didn't want one. I didn't want to go to the ER either, but Rob had no intention of driving me anywhere else. I maintained that it was just pleurisy, based on how Tracey, (a friend of mine who had pleurisy a few months before), described it to me. I had read about it at the time so I was sure that was what it was.

After several hours at the hospital they finally gave me a pain killer and Rob took me home. I stayed at his place, I didn't want to be alone. I was really hurting that much. The next day I received a call from Dr Ferguson, (my GP), telling me to come in and see her. They had "seen something" on the x-ray they took the night before at the ER and she wanted me to follow up with her. I went in, willingly because I was still in some pain, and she agreed it was indeed pleurisy, (see, I knew it!) and scheduled a CT scan to check out what it was they saw on the chest x-ray the night before. I thought I would be fine, I felt better by then, so I said I didn't want more pain killers. Unfortunately, I got worse.

Lesson one. If told you have pleurisy, and subsequently offered pain killers, you might want to say yes!  On the night of the 9th of December I was in such agony I thought I would have to go back to the ER. Of course, I did not want to do that again, for more than just financial reasons. I took 3 types of prescription painkillers and none of them touched this pain. I'd have sold my soul right then to have the pain stop.  I stayed at Rob's, again because I did not want to be alone with the type of pain I was in, but in the morning I called the Dr's office and begged someone to see me right away. They got me in right away.  I drove down there as soon as I hung up with phone. I got to see the Nurse Practitioner, Christy. She found a huge lump in my neck that I had not noticed. I guess it came up the night before. Dr Ferguson came in to see me, and then they sent me to St. Dominic's hospital for an immediate CT scan of neck and chest.  I still thought nothing of this. I went for the CT scan, but my usual fears were made worse by the fact that I had not slept and I was just so very tired. The whole thing was a horrid experience but things got much worse when the radiological technologist said I had to wait, because they had "seen something" on the CT scan and my Dr wanted me to have a biopsy immediately.

I waited for as long as I could stand it and then I said "what did they see" the tech, as casual as you please, simply said to me "Oh, Hodgkins".  I will never forget that moment. The room suddenly became huge, dark, and ominous and I, in contrast became small and alone.  I calmly said "Take this IV out of my arm, I am leaving".  That was how I found out I had Cancer. It was not confirmed, I knew that, but somehow, I knew it was true.  On December 10, 2003 my life completely changed, permanently. Things were never going to be the same again. 

I remember parts of the drive home, but some of it is blank, like my mind had simply shut down.  I called my ex husband, as he is a paramedic.  I remember I could not seem to operate my cell phone.  I knew I wanted to dial a number, I even had it on speed dial, but I kept fumbling and I couldn't seem to get my brain and my fingers coordinated.  I remember I kept pressing buttons but not the buttons I needed to make the call.  Finally I managed to press the right button.  Rick answered the call and I remember simply saying "Tell me what Hodgkin's is.".  I recall his answer, "It's a type of cancer.".  And there is was, conformation of what I already knew.  I had cancer.  CANCER. 

All I could think of in that moment was, "When will I die?".

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Below are comments that were left at my site on the original blog post.  Some comments were from friends, but some were also from people I did not know.  I am keeping them and including them here because those comments meant so much to me then, and I am grateful even now.   Days when I felt so lost and alone, the kind words, often from strangers, warmed me, even for a moment.  It was a connection to life and I knew at least I wasn't screaming in the unheard silence, even if it was something I had to face alone. (Epilogue follows).

Desiree        |24.227.249.112|2005-06-28
Hi i just joined your site today. And i read your story on how you found out that you had cancer. I 'am really interested in your story and what you have to say. Two of my great aunts passed away from cancer. One of them passed away a few years ago of vaginal cancer . And the other about a month ago of breast. And my husbands grandmother about a year ago of breast cancer as well. And now his grandfather is in the hospital for colon cancer. And we don't think he will make it. We can only hope and pray. Sorry for the long letter. I just wanted to let you know that i'am a huge supporter of cancer. And i send out my prays to you. I hope to be a member of this site for as long as you have it up. You are very brave to share your story with complete strangers. But maybe it will help me and many others really understand what goes on. Take care and god bless. :)

tennisboi  - wow |172.192.111.174 |2005-07-01
I just read your story and I was thinking of what I was doing during those dates and to think that someone across on a different continent is going through something of this sort. I joined today and I'm glad I did. God speed

brigan4  - newbee |152.163.100.13 |2006-03-17
my best wishes are with you we will all meet up on e day at the restaurant

pleonhar  |192.35.35.34 | 2007-08-20
5 years ago I had a growth on my thyroid. The doctor said he would take it off and I could live with 1/2 of the gland. I woke up and was told all was well. A week later I went in to get my 'return to work' papers signed; my husband was at work. The doctor came in and asked what I was doing on Friday morning. He then said sorry. I called my husband and told him that I had cancer. Everyone has said if you have cancer this is the one you want. No one wants any type of cancer - my prayers go out to you in hopes of a cure. However - sorry to say - you can't beat this one - every ache, and pain, and bruise from this day forward that requires a doctor's visit - that "C" word gets thrown on the table every visit! Sorry. I just joined this site today - it looks interesting and I will check in periodically to see how you are. Praying for good health.

Epilogue

So, this is how it all started.  I have always wondered what I did on December 2nd, 2003.  I would not have squandered that day, had I known it was to be my last day without pain.  When I say that it was my last day, I mean that completely.  I do not mean for a short time, I mean - ever.  Since that day, I have not had a pain free day.  I used to believe that I would, that eventually I would recover to the point of becoming pain free.  But I have long since come to terms with the fact that all the chemo and other treatment I received has caused irreparable damage and I am simply never going to have a day without some level of pain ever again.   It is the trade off for survival.   My joints have been degraded causing pain in every joint in my body.  The cartilage is all but gone in my knees.  My shoulders have bone spurs, as do my C5 and C6 vertebrae. Most days I have terrible pain in my legs, the right being usually worse.  Some days I can not tolerate the pain in my right arm, from my neck, all the way down to my fingers.  Again, usually worse in my right side. I swell up, all the time. I swell everywhere, but my legs and feet are usually the worst.  My vision has deteriorated greatly, also attributable to the chemo. And the two absolute worst of life-long side effect of all are the 'spasms' (for want of a better word), and the bone pain.  The bone pain may be impossible for you to comprehend, unless you have experienced it. I certainly would never have had any hope of understanding this if someone had told me about it, had I not experienced it for myself.

Anywhere on my body where the bone is close enough to the surface that you can feel it, I experience tremendous, debilitating pain if touched.  For example, if one of my cats climbs onto me, and they walk on my leg, I will quite literally, scream in agony.  This is by far the worst side effect. I am now used to pain, it is a constant, daily, never ending thing for me.  Because of this, and because of how long I have been dealing with it, I am used to a certain level of pain. That 'usual' level is now my 'normal'.  That doesn't mean I am not tired of it, but let's face it - this isn't going to change, not for the better anyway.  But the bone pain and the spasms are so bad they bring me to tears.   The spasms, (I really don't know what else to call them), are caused by nerve damage.  It's not repairable, but thank heavens it is nowhere near as bad now as it was initially.    What happens is, for no reason, with no warning, completely randomly I will experience what I can only describe as a cramp, but it isn't muscle cramp.  It's more like a loss of ability to control my limb, be it arm, hand, leg, foot. Sometimes it happens in my back or side, but that is not as common.  If it is in my hands, my fingers will be bent in a deformed manner and I can't move them. This is accompanied by horrendous pain.  If it happens in my legs, or feet, my toes may bend apart in a deformed manner, and I can't move them, or can't move my leg.  This too is accompanied by chronic indescribable pain.  Fortunately, while I know this will never completely cease, it has gotten a lot better than it used to be.  It was a lot more frequent, a lot more severe, and each incident lasted a lot longer.  It was so bad initially that there was no way I could stop myself from screaming.  Now days I can usually manage not to scream, but if you are near me when it happens, you will be very aware that something is very wrong and that I am in very bad pain. 

What else do I now live with? Well, there's the brain fog that never completely lifted.  And for someone who valued her brain, (It's probably my only asset), knowing that the poison that might cure me, might also destroy a part of my brain, was very difficult for me.  It doesn't seem like I have lost  the knowledge that I had, not too much anyway, but what it has done is caused me to not always be able to access the information when I need it. For example, if you have ever tried to think of a word, you know the word you need, it is right on the tip of your tongue, but you can't quite reach it.  That's how it is. Only it happens every day. It's like looking through an open window, you can see the word or information you want, but you can't access it.  It remains just out of your reach.   It is so frustrating.  It used to bring me to tears.  Now I just get frustrated, and if it happens too much in any one day, I get a little angry.  


My hair all fell out, but has since grown back.  Not as thick, and now it grows much more slowly.  I am sure I am the only one who even notices how thin my hair is.  It's not a vanity thing, but we will discuss that issue in a later post.  I have aged, I watched that happen.  I used to look a lot younger, and I don't mean I have simply aged the amount of years that have passed, I mean I saw the chemo actually age me, very quickly.  There's more, but that too can wait for another entry. 

Physically I am no longer able to do the things I used to do.  There are many signs of the damage caused by the treatment I received.  But I am here. I am alive. I get to see the sunrise each day.  So, if I knew exactly what it would be like, if I could have known precisely what side effects I would have to live with.  If I could have seen what restrictions, what pain, what frustrations would forever be mine - would I have gone through the treatment?

For all the wonders in the world.  For all my amazing friends.  My precious pets.  My amazing partner - and for all the ocean sunsets and moonlight nights.  Hell yes.  Yes, I would.

Until next time,