Friday, July 13, 2012

Money, money, money!!

When we were in the States, we had to go to a ATM every few days to take out cash for the treatments I was getting.  Every single time we did, Kate would ask to see the wad of cash and then exclaim, "Holy!  We are rich aren't we?!"  Little did she know it was only $3,000.00 at a time, but in 20's it looked like a lot.

Every single time I would tell her that money doesn't make us rich.  It is what we have as a family in this life and what we all have together is what makes us rich.  Then she would say, "But we're still rich right?!"  It was so cute.

One day when I got "home" from treatment, she busily made something for me while I had a nap and the boys were outside.  When I woke up she handed me this.

"Here Mommy.  I made you this money.  It should be enough to pay for the rest of your treatment.  I can make you more if you need it."

Seriously, I didn't want to let her out of my arms.  It was so sweet and so very special.  It is amazing how intuitive children really are to what is going on around them.  She has no concept of money, but knew we were spending it and she wanted to help.  I am one lucky Mommy.

What's in your drink?

Well, this is what is in mine.  It is gross.  I have added two small carrots back to it so I don't barf on the counter while I am chugging it back.  Carrot juice is high in sugar, something I am not supposed to be having but they make a HUGE difference.  I am supposed to juice 3 times a day, but if I only get one in that is ok too!  Some is better than none.

Want to try me?

I like to call it joker juice because it is deep green and purple.  But when I added the carrot back in, it looked more like a Halloween cup of crap.  Once it is all mixed up it is just looks plain old sick.

Feelin' Calm

That is how I felt the entire time leading up to my CT.  Calm.  I was reassured many times that there was nothing to worry about.  But, sitting in the hospital, waiting for the exam, well, that's an entirely different story.  That is of course when I talked myself into worst case scenario.  What would we do, how would we handle it, how would we tell the kids, how would I pick myself up, yet again, dust myself off and keep trying.  Knowing there was something in my brain was just so much harder to swallow.

The test went fine.  I was somewhat calmed by the fact the my GF's brother was working so it was nice to see a familiar, friendly face (the other guy that works there is pretty cool too!  He has been there for most of my other CT's) and joke around with the two of them.

But as soon as that test ended, I asked when the results would be available.  He told me later that afternoon they would be electronically but we wouldn't have the official results until 3-4 business days.  Of course.  More waiting.  Well, by this time I had talked myself into have this new problem in lives, and how were we going to deal with it.

I called Ken to see if he could phone our family doc and find out.  Last time he did this, he went in on his own but he said you could tell that our doc was wanting me to be there too to discuss things.  So he said that this time dr would want to see us both.  Fair enough, I just didn't know how I was going to take the news sitting in the office.  It was easier when Ken came home and told me and we could fall apart together.

Ken called the office and got us in.  We were getting ready to head out of town to a family reunion and my nephew's mission farewell (they serve for 2 years!!  Amazing boys!).  I was conflicted about wanting to know, but just really needed to so we could either fake it till we made it, or have a really great weekend.

Waiting (have I told you how CRAPPY waiting is?!) in the dr's office felt like forever.  When dr came in she told us that she hadn't had a chance to look at the results yet either so we would all see them together.  She pulled the results on her computer and started reading through.  Let me quote-ish "No cancer in the brain", well, that is all I heard anyways!!  I almost swore I was so happy!!  I felt like a 1,000 pound weight was lifted from my back.  I felt so great, the greatest I had felt in a long, long time.

She was happy for us too and wished us a great weekend.  I smiled and cried and thanked God all the way home.  I was so thankful for so many things.  The small miracles that happen in our lives are amazing! 

Now we are just going to figure out where to go from here.  I feel really good about the plans that we have made with our Dr here and I feel, once again, that I am in good hands.

The "Other" Doctor

Ken and I got in to see the other doctor.  What a relief!  We were greeted with a friendly smile and there was absolutely NO tension between Dr and us.  It was so nice. 

Dr explained that they couldn't follow the protocol of Dr. F, but that of course they would follow my care and follow up as I still needed it.  We knew that the "Canadian Cancer Center" wouldn't approve the therapy that I had received in the States, but it was so great to know that this Dr would be there for us anyways.

We discussed a few options of things that we thought needed to happen.  First of all, the head CT.  Ken and I were wanting to get a chest CT at the same time to just get it all over with, but Dr explained to us that we should start in one place and then go from there.  IF something showed up in the head CT then we wouldn't need to do a chest CT because we would already know what it was.  If it was in my brain, then it most certainly would be in my lungs.

Ken still really wants me to do a biopsy, which I do not believe in.  I believe in the Greek test that I had done which did find the cancer cells anyways.  What more do we need to know?  But Ken and Dr (and others) have expressed their opinion that they think I should get one done anyways.  I still don't see the point.  With possible tracking and such, why do it??! 

So the three of us came up with a plan.  If the head CT was clear, then we would do the chest CT.  If the nodule in my chest was bigger then Ken wants me to do the biopsy.  If it is the same size or smaller, then we will just continue on the way we are.  I read in Dr. F's book that sometimes the tumor doesn't go away, but that many people live a long and healthy life with stable disease.  I told Ken that even if it didn't shrink, but stayed the same, that was fine with me for now. 

We were still really worried at the cost of the chemotherapy.  We don't really have another 7 - 10 g's to spend on it, but I just felt that it was so important to finish this therapy that we started... the one I believe in.  It would be like quitting a race just before the finish line.  I wasn't in for that.

I called a pharmacy just below the border to find out the cost of the pills.  After a bit of searching they told me that all I could do was order a whole bottle of them, that was the only way that they would be able to order them in.  The cost would be - are you ready for this??  $273.00.  That was it!  WHAT A BLESSING!!!  I was so happy.  This, was completely affordable.

I called the clinic in Reno and they faxed the prescription up to a town just across the border where I could pick them up.  I finally grabbed them on Tuesday and started them yesterday.  So far so good.  Just the usual chemo bloating going on.  Seriously, I don't know what it is with chemo drugs and filling up like the good year blimp!?  I took one anti-nausea yesterday morning with my first pill (I take them 4x's a day) that was supposed to last 8 hours.  I think it must have because I felt fine all day.  Then I took my 3rd pill at 5 without an anti-nausea, and my 4th pill at 9pm, and was fine all night.  That is not to say I don't feel a little crappy because I do, but so far, it's not too bad.  We'll have to see how the week progresses.  But I am hopeful!!

Monday, July 2, 2012

Coming home shouldn't have been such a shock...

My sis and bro-in-law have been here for the last week and we have been soaking up the family fun time.  So I have not had the time to update all that has happened since we got home.

Sorry again for any of one of you who read my blog and are going to be offended.  Don't read it if you don't want to.

Let me get something out of the way for starters.  When I blog about doctors and such, I am strictly talking about the doctors I have come into contact with - all of whom are in the field of oncology.  Cancer is a trillion dollar industry/business, ya, I chose those words properly, who makes a lot of people a lot of money.  Since the "War On Cancer" began 41 years ago, the amazing menial life expectancy of most cancer patients has increased a whopping 2%.  THAT is pathetic.  For all the money, time, brains and research that goes into "the cure for cancer" that number leaves me speechless.  I DO NOT VIEW ALL DOCTORS THE SAME anymore, especially after my experiences with coming home.

When Ken and I got home, we came home with a prescription in hand and hope in our hearts.  Hope that our doctors here would co-operate with us and Dr. F.  I don't really know why I thought this.  (Only one Dr chose to support our decision in trying something else and said that he would oversee my care when we returned home.)  They didn't support my choice in going to the States to try a new approach and they were less than impressed when I asked for this help when we got home.

We PAID, out of our own pocket (and yours, for all of you amazing people who could help us out financially along our way!) for the therapy that I received.  It cost us over $30,000.00 which I am NOT complaining about.  We were just hopeful that when we came home with a written prescription for my oral chemo that I need for the next three months that the financial burden for the chemo would be lifted because I would be receiving the chemo at home.  Not so.

When I phoned the hospital to try and get an appointment with the Dr who said he would oversee my care upon returning home I spoke with the oncology nurse.  I am sure that I may have been reading into the nurse's tone a little, but after Ken spoke with the nurse later in the day, I was sure that I wasn't.

N (the nurse, for short) informed us that the chemo (which at first N had never heard of so I thought it was something different that maybe they only made in the US) would not be covered.  N wanted to see a copy of the prescription so N could ask my oncologist about it. Afterward N informed me that the prescription was the oral chemo for the cyclophosphamide that I had already taken.  This left me confused again wondering if that meant I couldn't have it again even though it was the ONLY chemo drug that proved to be effective in the Greek Test I had done.

Ken ran it up to the O unit later that day so N could copy it.  N wasn't in but he ran into N in the hallway on the way out of the hospital.  Their conversation went a little like this in point form:

* They have my best interest in mind and will do anything to help me through my cancer.

* They spoke a little bit about me already having had taken the chemo that was recommended.

* Ken was told that N thought it would be doubtful that any protocol would be followed by an outside doctor.  An analogy was given of a parent telling a local teacher that they were doing their job incorrectly because in LA they do it a different way.  Another analogy was given about asking an investment broker for advice after you have told them that their investment strategies were incorrect.  Ken asked, "So the doctor's here wouldn't follow another protocol from a US doctor out of spite?"  We were informed that the only treatment that would be followed would be one developed in Canada by the Cancer board.  So Ken asked if the dr's here looked at it and thought that it was a good and logical protocol could it be used.  We were told that that may happen but that this nurse has never seen it happen in their life.

* Ken mentioned that Dr. Dr had contacted us while being in the US and that Dr. Dr had told us that no bridges were burned and that my best interest was still the most important thing to this Dr.  At this point, N snapped back how upset N was at this doctor for doing such a thing and how unprofessional it was.  And also that he had been "chastised" for doing so. (Classic example of a doctor stepping outside the box and what happens within the medical "community" if you dare do so.)

I was really upset.  Apparently my life is a game and I am a pawn in which to make money with.  If I am not able to do that and I want to TRY something different with MY OWN BODY, then I am pretty much a write off.  This is how I feel and I know that those that I have been in contact with would swear up and down that this is NOT the case as "my best interests are in mind".

I phoned the next day again to get an appointment with one of the Dr to talk about getting an MRI instead of a CT.  I can't remember if I told you that "a single CAT scan of the chest may be equivalent to 100 plain chest X-ray films in terms of radiation exposure, and a PET scan performed with a radio-tagged sugar molecule may deliver five times the radiation dosage and exposure of a single CAT scan."  TWO dr's of mine confirmed this before I ever read it by telling me that they don't like to do CT's as often because they are finding that over time they are causing tumors and tumor growth.  They used to do them all the time but they are limiting the amount of these tests that people have to have.  At least they can agree with this statement! 

Back on track, Dr. F told me to ask for MRI's instead of the above mentioned as there was less radiation exposure which is hard on your immune system if it is working harder than normal.  We wanted to get in and ask if we could have an MRI instead so I got in with the other Dr (whom I greatly respected) and not the Dr that said he would oversee me when we returned home.  Fine with me, just wanted to ask a question.

When we entered the exam room you could SERIOUSLY cut the tension with a knife.  It was awful.  I felt sick.  The Dr asked us why we were there and we told him about the other Dr (confused yet??) who had called us to talk to us about things if something should arise and just let us know what we could do.  I went on to explain that I was supposed to go in for a CT at which point I was cut off and asked why.  I told Dr that it was because there could be a possibility of mets to the brain and we just wanted to rule that out.  The response to that was, "You don't look like a person with metastases to the brain."  I didn't realize that "those people" actually "looked" like something different.  Like my sis said, she has a mass on her pituitary gland and you wouldn't know it was ever there unless you tested for it.  Luckily hers is benign.

This is also what I find completely unfathomable... when you have cancer, the only way to detect it IF you live past the 5 year mark (in my case) it to wait for more symptoms to arise.  So on the slight probability that I may have a brain mets, we just ignore all of that until more symptoms arise?  Does it not make more sense to stay on top of things and maybe find out from the beginning what you are actually dealing with??

So knowing the pathway that breast cancer travels, does it really hurt to check it out?  Once again being confused by the reaction of the Dr I asked, "Well then, do I just not worry about it?"  The response was basically just that, to not worry about it.

After this point we got into a huge discussion about needing the chemo, why we wouldn't be able to get it covered in Canada (because it wasn't a "protocol" (seriously, I don't know how many times that word was used in our conversation) used in Canada), how ego's weren't hurt because I am not the first patient to seek other treatments, how a biopsy was the only way to figure out what we are dealing with (and if you read a few posts ago you would understand why I am not 100% game to cut into my body again with the myriad of possibilities that can accompany another biopsy), how my care is still important to them (even though I am sure on all accounts we would all be happy to avoid one another for the rest of our lives!!), how silly these "home-made remedies" are and how they burn bridges of treatments that may have worked in the future but can't because they were given in low doses, blah, blah, blah.  It goes on and on.  And then the grand finally, "Well, I have to get back to my patients who actually want and need my help."

Yes, you heard me correctly. 

I thought I was in charge of my own body and how it could and should be treated.  I am 100% sure that I pay into my BC medical, each and every month and that I am entitled to "care" (whatever the hell that means anymore).  I am so glad that the "patients best interests are in mind" (again, all of this having to do with CANCER) as long as the patient is compliant and doesn't really ask any questions or seek further knowledge of what else might extend their life above the freakin 2% survival rate that this "war" has given those with cancer over the past 40 years.

I know I am not a doctor.  I know I don't understand the reason why everything is done according to protocols and such, but my heart, my spirit and my Father in Heaven have led me to information that I feel is far more helpful and beneficial than anything that I have found anywhere else so far in my journey.

I have great respect for doctors who are actually doing their job for the "patient's best interest in mind".  I mean that from the bottom of my heart.  I am also thankful for those who don't mind stepping to the side of the box and maybe even out of it to help another.  I know that doctors go to school because they truly want to help another.  It is just sad to me that money plays such an ginormous roll in dictating what actually will happen with people and how they will be treated and how blinded some can be to the fact that there are actually some other possibilities out there in this world.  Afterall, we eventually did find out that the world is round!!