Tuesday, March 27, 2012

"Sympathy" pain

Jeff and I at chemo July, 2010
I am still on cloud nine from the news from my recent scan.  Things look good here in cancer land.  I have yet to hear the words "remission" but I really don't care.  I suspect that is due to the fact that I still have cancer in my body, it is dead and shrinking every day, but it is still there.  Remission is kind of a dirty, tricky word anyway.  To be in remission means that you can just as easily be out of remission at any given moment.  Being told that I am in remission would cause me to worry about possibly being out of remission and honestly, I would rather not have that hanging over my head.  I would rather spend that energy in much healthier ways, like getting healthy, recovering from cancer and cancer treatments, regaining my mind power, focus, concentration and memory.  It still gets better on some small level every single day, not noticeably better from day to day, but better in comparison to months ago and for that I am so very thankful.

My two year "Cancerversary" was this recent Saturday.  I knew it was coming but when the day came I actually completely forgot all about it.  I guess I have had other things on my mind.  I should have been celebrating.

The boyfriend and I have been growing apart for quite some time now.  We have been losing our connection, both emotionally and physically.  I have felt it since the day he came with me to hear those words "You Have Cancer".  I can still vividly remember the look on his face before those words were even fully off the lips of the doctor.  At first I thought it was shock.  This is what I told myself for a long time.  What I failed to see, or perhaps did not want to see, is that it was indeed shock, but also some other things like pity, sympathy, and with those words the first unconscious brick was placed in the wall that would later come between us and our love for each other and lead to the demise of our relationship.

Every time I had a procedure or went for chemotherapy, another brick was placed in that wall.  Every time I confided in how much I hurt physically, how uncomfortable I was, every time I vomited or was too weak to fend for myself another brick went into that wall.  He began distancing himself from me.  He felt as if there was nothing he could do for me.  I am sure it was not easy for him to watch someone he loved having to go through such a fight for their life.  There were times he would even say out of frustration "I can't deal with this".  The first time was shortly after my diagnosis while we were in Hawaii.  It was just too much for him to handle and he shut down.  He stopped communicating with me completely.  I tried every tactic from tough love, to heart felt conversations to becoming angry and bitter but nothing could get him to open up about how he really felt.  This went on from the day I was diagnosed until one week ago.  There came a time that I finally gave up on trying to get him to communicate with me.  That was around last November.  We didn't spend the holidays together, we only hung out to ski or have a quick bite of lunch or dinner together then we both went our separate ways, usually with me going home and him going to a bar.  It was at one of those bars where he met someone who could fulfill his need for physical stimulation.  We hadn't had sex in months.  Even though we were still in a relationship he cheated on me.  This happened the day after I found out the awesome news from my last PET scan.  Perhaps he didn't feel quite so guilty about it because I no longer had cancer.  He wouldn't seem like such an ass then as he would if he cheated on his girlfriend while she was fighting for her life.  I don't blame him for seeking sexual connections with someone else, I had become unavailable to him in that way due to the lack of communication resulting in the lack of knowing how he felt about me.  I don't hate him.  Hate is a word I rarely use.  It just isn't in my vocabulary.  Much more can be solved from love than hate.

Then we had a much overdue conversation.  He came clean, and honestly talked to me about how he had been feeling for so long.  I know he still loves me and cares about me.  But there is a huge loss.  The fun we used to have, the connection we shared, the way we were so completely and deeply in love was lost the day I got my diagnosis.  All he could see was "sick Laura" and he felt as if he could do nothing at all for me.  He stayed with me for nearly two years yearning for what we once had pre-cancer.  He wished, as did I, that we could find that love again.  I watched hopelessly as my body ravaged from cancer and chemotherapy became a former vision of itself and became undesirable to the person I loved the most.  All of those times he used to sneak up behind me and hold me while planting little heated kisses on my neck were just gone.  It was if if he was afraid to touch me, afraid he might hurt me or break me or afraid that he might get "the cancer".  For two years he kept his mouth shut and did not communicate his true feelings.  He was afraid of hurting me and my feelings.  He fell out of love but never told me.  He stayed with me partly because he felt sorry for me!  He had the courage to finally disclose this to me recently.  Now let me just say that I am so appreciative to finally have an honest heart to heart conversation with him, but it still doesn't make it easy to hear that the person you loved was not with you out of love for you, instead they stayed with you because they had pity on you!  I had my suspicions that this was the case but none the less, it is still a hard truth to take.  An emotional punch to the gut, some one ripped your heart out of your chest and stomped on it a few times before returning it a bruised and broken mass.  The last two years of my life (in the relationship arena) have been a sham, nothing but deceit, dishonesty, lack of communication, lack of love, and full of someone who I though was acting out of love actually acting out of pity.

It hurts, cuts deep, makes me wonder when all of the loss that cancer brings with it will ever end.  Having cancer is a very lonely place.  I have a huge support group of friends and family out there and they, YOU, all have been my one constant in my life.  For that I thank you all from the very depths of my soul. As for my journey through cancer on a daily basis, I did it all alone.  I had no one to hold my hand when my body screamed from the toxic chemo cocktails injected in my veins.  No one to check on me when I woke up in the middle of the night vomiting my brains out.  No one to hold me and tell me that it would all be ok when I was so afraid of what was ahead.  Instead I put on a smile as best I could, tried to make it work, and hoped to god, the universe, pink unicorns, whoever/whatever that my beloved and I could make it through this and come out better on the other end.

I still love him.  I love the way we were, the luckiness and thankfulness we shared with each other in the beginning. I miss the planning and daydreaming of all the things we wanted to do together.  I miss the sweet, loving kind man I fell in love with.  This is what I will hold on to and will keep close to my heart.  Not the bitterness, lies, cheating, and pity.  We all have ways of dealing with, or not dealing with cancer.  Surviving cancer has been by far the hardest thing I have ever had to do in my life.  I found a way.  I love my life! I love my lifestyle! I love who I have become from all of this! I love ME!  True, it hurts now but I can also see that it will lead to a blossoming of character and spirit and new growth, so fitting for spring.

Hopefully this will be the last of the hurt for a while.  Time to devote to myself and helping others.  Time to heal from all of the trauma and deceit.  Time to forge a new path into a bright new future filled with love, joy, compassion, admiration, and gratitude for every moment of every day.  A time for wholeness, or Sowelu a rune that was tattooed on my body so very long ago that constantly reminds me that we are all a part of a greater whole.

And just for the record,


Friday, March 16, 2012

New lease on life!

I went to see my oncologist yesterday with my mom in tow.  We were both trying to contain our excitement at the seemingly awesome pictures of the last PET scan that I had done on Monday.  We thought it looked really good but then again, we didn't want to put the cart before the horse.

My oncologist was "very pleased" with my scan results, which is saying a lot for him as he tends to be very understated most of the time.  I am sure that his profession requires a certain amount of detachment from becoming emotional over patients test results.  It appears that I am indeed CANCER FREE!

I still have dead tumors in my liver (they are continually shrinking) but there are no LIVING TUMOR CELLS left in there or in the rest of my body!  Needless to say my mother and I were both sporting perma-grins for the entire day after that.

It is like a new lease on life!

All of my hard work has paid off and in LESS THAN TWO YEARS FROM MY ORIGINAL DIAGNOSIS!

Two years ago on March 24, 2010 I had a very grim prognosis.

Two years ago my world spun out of control.

Two years ago I decided to take control back of every possible thing I could control.

I radically changed my diet, it was do or die and I was not going to be complacent about accepting what the statistics told me.  I was told I was inoperable and incurable and that I did not have much time left on this earth.  I was not a candidate for liver transplant, living or deceased as the cancer had metastasized from my bile duct into my liver and they were afraid that it would be a waste of an organ to give me a transplant as it could potentially have spread to other places that they were unaware of.  I took this to mean that I would have to do this all by myself, cure myself from the inside, as in INcurable.

I want to share my story far and wide!   I want everyone out there to know that it can be done!  I have scoured the internet for others who have cured themselves from extensive, aggressive, incurable, cholangiocarcinoma and I have found none.  Why is that?  I have found others that have cured themselves from other types of cancer but not CC.

It wasn't easy.  Over 40 chemotherapy treatments and in between all those treatments nutritional IV's to help me negate the nasty side effects of chemo.  So many drugs, handfuls of oxycodone daily, rashes, early menopause, hair loss, mood swings, constant itching and ringing in the ears, my brain turning to mush, loss of weight and with it all muscle tone in my body.  The list goes on and on and I still struggle with many side effects today.

If you are living with a cancer diagnosis you don't have to just accept everything your doctors say.  They are only human and as all humans they make mistakes.  They see so many patients every single day, too many to be able to fully devote their time to you and your healing.  Please, I beg you, take your control back! Become informed and educated about every little thing you can to to help yourself.  You may not believe in some of the "woo-woo" stuff like the healing power of crystals or foot detox baths or that acupuncture or acutonics can actually heal you but tell me, what do you really have to lose by trying it?  Drugs are not always the answer.  I do feel that drugs had a place in my healing process, but I also feel very strongly that it is all of the "other" stuff that I did that kept me strong enough to fight.  Who knows what "it" was that killed my cancer.  Perhaps it was the combination of everything.  I am not going to ask questions about it at this point, I am just going to revel in this moment and live in it being thankful for my new lease on life.  I still have some healing to do, and it is still a long road ahead of me to fully recover but this girl is not complaining one tiny bit!


Thursday, March 15, 2012

Scan Results Day!

PET scan from 2010
I had my 3rd PET scan on Monday.  I did not have "scanitis" as much this time as I did for my previous CT scans.  Something about PET scans makes them more meaningful to me than the CT scans do.  Perhaps it is because of the 3 PET scans I have had only one of them was not so great (the first one that showed all of the tumors in my liver).  Here is a picture of the first PET scan I had done back in March of 2010, shortly after I was diagnosed with CC.  You can clearly see the giant lump protruding from my abdomen.  It is even pushing my stomach out because it is so massive.  This is where I was told that I most likely only had anywhere from 5 months to a year to live.

Scan #2 from August 2011
The second PET scan was quite a bit different looking from this one.  This scan was from August 2011, 17 months after my diagnosis.  This is the scan where the radiological oncologist was astounded that in just 17 months I was able to somehow get rid of the cancer that others predicted I was most likely destined to die from.  This is the scan that blew us all away as there were still masses of tumors in my liver but all of them were "dead" or no longer cellularly active.  You can see that the giant mass of tumors in my abdomen is no longer there.

Scan from March 2012

THIS is the scan from this recent Monday.  This scan was performed at another place.  Normally I got my PET scans done at the Good Samaritan hospital in downtown Portland.  This time the scan was performed at my cancer clinic.  I am not sure if this is why the scan looks so different, or if it just looks so different because things are just that much better, but I am going to take it at face value.  In comparison to the other two scans this one looks AMAZING to me!  To me this scan looks like "Um...where is the cancer?"  To me this scan looks about a zillion times better than the other ones.  If they thought the last scan looked good then it seems like they will think that this scan looks amazing.  To me this scan looks like nothing short of a miracle!  But, then again, I am no oncologist nor am I a radiologist.  I have an appointment this afternoon with my oncologist to discuss the "official" results.  Who knows, perhaps I am missing something.  I am trying to not count my eggs before they hatch or put the cart before the horse but I am hoping to expect some good news today.

I visited my naturopath yesterday and got my nutritional IV.  I also had an appointment with the doc.  I had some blood work done last month to check to see if I had candida and we discussed the results of that blood work.  It appears that I do indeed have a full blown case of candida caused and/or exacerbated by the chemotherapy and other drugs used during my treatment.  Quite honestly I am very certain that I have actually had candida for at least the last 15 years and that is possibly what led to, or proliferated my cancer in the first place.  The doctor told me that he has most likely seen higher numbers come back for this test but in his clinical memory he could not remember when.  Anything over a 1 means that you most certainly have a candida overgrowth in your body and my numbers came back at a whopping 3.8!  Candida overgrowth actually weakens your entire immune system and leaves you vulnerable to other illnesses and diseases (such as cancer, rheumatiod arthritis, crohn's disease, IBS, fibromylagia, and tons of other things).  I have been at my doctors office on average of two times every months since about 1998 complaining of the same symptoms (bloating, gas, abdominal pain, mucus in stool, heartburn, acid reflux, constant stomach gurgling) and in all that time no one has ever mentioned the word candida to me.  Instead they would write it off as IBS (irritable bowel syndrome) and give me some pill or  another and tell me to come back if it felt worse!  Later the doctors actually told me that IBS is the category that they lump all digestive disorders into when they actually have no idea what is wrong with you! Can you believe that?!  So if you have been told that you have IBS, I highly recommend that you confront your doctor and ask for a simple blood test to see if you actually have an overgrowth of candida albicans instead.

Once again I must change my diet.  Oh well, I am a seasoned pro by now.  No sugar, no bread, no gluten, no beans, no seeds, no oatmeal, no corn, no soy, no rice (the only grains I can eat are quinoa, millet, barley and kamut), no anything that has been processed or manufactured.  In simple terms I am supposed to eat like a "hunter and gatherer" meaning if you can't find it out there normally in nature then don't eat it.  Pretty simple.  It is a shame that I just went grocery shopping yesterday and some of the things I purchased are going to be sitting in my freezer for a while until I can get this situation cleared up.  I am told that if I am strict with my diet it should only take about a month or so.  There are natural ways to rid your body of candida, for instance coconut oil, garlic, and cinnamon are known to kill it.  My naturopath has given me a 30 day supply of highly concentrated garlic and cinnamon that I take every day.  I am also supposed to eat as much coconut oil as I can, "put it in everything" he told me.  Lucky for me a friend of mine gave me a giant tub of coconut oil recently.  Another friend of mine also gave me a great book all about candida and the proper diet to follow to rid yourself of this condition.  It is a great book and it even has recipes so you can make great food that does not promote the growth of candida.  The book is called The Body Ecology Diet by Donna Gates and it is a must read!  It even has a questionnaire to see if you have the symptoms of candida.

I am finding out that having cancer is not just about trying to kill the cancer and become cancer free.  It brings with it an entire entourage of other complications.  If or when someone who is given a cancer diagnosis is able to get rid of the cancer beast people sometimes think that the world just goes back to a state of normalcy for the cancer survivor/patient, like now everything is all over and they can just resume their lives again but this could not be farther from the truth.  Cancer brings with it many things, not all of them always bad, but most of the time it brings other complications as well.  I am finding this out now.  I knew that this was not going to be a stroll through the park by any stretch of the imagination.  One (of many) positive things that cancer has taught me is that we all (even those of us out there without a cancer diagnosis) must be aware of what we put in our mouths.  Our society makes this hard for us.  Giant agriculture tells us that their products are "healthy" and we believe them.  We are completely bombarded by over processed foods that literally all contain some sort of derivative of corn and/or soy.  In small amounts and eaten infrequently these often do not pose a problem for our bodies.  But since they are in nearly every food we eat (unless we are eating mostly only fruits and veggies with 20% or less of our diet being animal products) our bodies are being over run by these yeast producing foods which weaken our immune system and create an environment for disease to flourish.

Pay attention to your body.  Listen to what it is telling you.  Make a conscious effort to really understand the way your body feels after eating certain foods.  If you listen it will speak to you.

Peace, love, light and many healthy blessings to you all!

Tuesday, March 6, 2012

Life's ups and downs

Getting in the sled.  Zoom, zoom!
Boyfriend and I went skiing on Sunday.  It was really warm up at Mt Hood Meadows, somewhere around 40 degrees.  They had just gotten pounded with snow recently and all of that powder was condensing and melting into what resembled giant piles of lumpy mashed potatoes with runnels everywhere due to the melt and freezing rain the day before.  Some runs were pretty crappy, but others were pretty glorious spring skiing on corn snow.  We had already made 4 runs when we noticed that the ski patrol just opened up a run in Heather Canyon, the "sidecountry" of Meadows.  We raced over there and were some of the first people through the gate.  It was glorious! Steep with a few inches of soft corn snow covering the pristine untracked hillside.  We quickly made our way down the first pitch hooting and smiling all they way at our good fortune.  As we approached the runout at the bottom of the slope the snow got stickier and lumpier.  Boyfriend is always ahead of me and stops to wait and watch me come down the hill.  This time was no different.  I noticed him waiting for me at the top of a little knoll and once he saw I was having no trouble he continued on.  I was slightly disappointed as I was looking forward to a little breather as the thick snow made quite a workout for me.  I decided not to take a little break to catch my breath and rest my legs and pushed on wanting to catch up with him.  Then it happened.  As I made my turn my left ski tip plunged into a thick sticky lump of snow and since I was leaning a little too far forward my ski tip sank straight down all the way to the tip of my boot.  The rest of my body, being already in motion, continued to fly forward in a contorted pretzel with all of my weight and momentum being concentrated on that one left leg.  I cried out in pain as I felt all kinds of things go wrong in my lower leg and ankle.  My skis did not release this time as the fall was slow comparatively speaking to other falls I have taken.  I was stuck, head facing down the hill lying on my stomach with my legs twisted unnaturally underneath me.  I tried to push myself to a more natural position and pain seared through my left ankle and lower leg.  My first thought was that I had fractured or broken my femur, bad news.  Then I thought that perhaps my achilles had been completely torn from its anchor under my heel, again, bad news.  As I tried to push myself up, my arms would punch through the soft snow and I would fall back onto the injured leg again crying out from the pain.  I heard boyfriend call my name, "HELP!" I yelled in a feeble voice.  I shouted louder again "HELP!".  I finally righted myself and released my boots from my skis.  Assessing the situation the best I could I deducted that I hadn't seriously broken any bones.  I was afraid to take my boot off for fear of what I would find there.  People stopped to see if I was ok.  I directed them to boyfriend so they could relay the message that I needed help and asked them to notify the  lift op that I needed ski patrol.  Ski patrol was there within 5 minutes examining me and asking me if I thought I needed a sled just as boyfriend came hiking up over the hill with a worried expression on his face.  I was going to try to be tough and ski on out but as I tried to put pressure on the injured leg I knew I would be riding out in the sled.  If you have ever had a ride in a ski patrol sled you know that as you make your way down the hill you get all kinds of curious and sympathetic looks from those out there who are contently shushing down the hill thanking their lucky stars that it is not them in the sled on the way to first aid.  The patroller, Stan, who was pulling my sled was a rock star!  We blazed down the steep hill passing other skiers and boarders along the way including boyfriend.  As the sled bounced past him at mach speed he said that I had the biggest shit eating grin on my face! I believe it! The sled ride was actually a lot of fun believe it or not!
Das Boot!
Later, after a few hours in the clinic and lots of ice and x-rays, the doctor determined that I did not have any fractures in my bones.  Good news! What I did do was sprain my ankle and tear my achilles tendon (OUCH!) that was where the majority of the pain was coming from.  I went to the clinic yesterday and got styled up with some crutches and a giant immobilization boot that actually feels really good due to the compression around my ankle.  I call it "Das Boot".  Since then I have been resting, icing, and elevating and I must say that it seems to be feeling somewhat better today.  Here is the bummer of the whole deal.  I am supposed to be moving in the next week.  WHAT?! That's right, packing, loading and unloading boxes and furniture.  All of my friends that can help work during the day and boyfriend will be gone to Chicago as of this Friday.  I am staying positive though and looking at this as the universe telling me that I needed to hire some movers.  I am hoping that I can scrape together enough money to be able to do just that, otherwise the moving thing will be extremely difficult at best.

It is strange how things happen sometimes.  I focused on getting out of this crappy government housing that I am currently in for months now, pretty much ever since the day I moved in.  It is so unhealthy here.  I focused on finding a healthy, affordable place to live and even got a much coveted section 8 voucher to help me out.  I found an awesome place that is only 1.5 miles from my current apartment.  I got accepted and submitted my deposit.  I started packing already as I expect to move within the next 7 days.  Then I got injured to the point where I can't walk without crutches making moving impossible.  So what do I do?  I could be angry and depressed about how life seems to be so unfair all of the time.  I could be bitter about how every time I seem to catch a break something happens to ruin it all.  I could do and feel these things but I don't.  I actually feel pretty damn lucky.  Lucky that I have no serious injury.  Lucky that even though I have stage IV cancer I am well enough to go skiing in the first place.  Lucky that even though I have been skiing and snowboarding since 1989 this was my first real injury and the first time I have ever needed the assistance of ski patrol.  Now I am going to focus on how lucky I am that I will be able to have movers do all of the hard work for me.

Sometimes life gives you ups, sometimes it gives you downs.  You can't have one without the other. How do you handle those? Do they make you grateful or bitter?