I typically plan a full day when I head up to San Francisco for treatments.  There are so many factors that can slow things down, especially if the day includes seeing the oncologist.  I know she takes time with each of her patients, so she is often late.  However, the wait is always worth it.

As you know, this has been a difficult summer.  Whole brain radiation took a lot out of me and the side effects just keep on coming.  Additionally, I have side effects from chemotherapy and side effects from support drugs.  I've lost weight in spite of eating and I'm struggling to keep my protein levels up and my glucose levels down.

Within the past two weeks, I've developed a cough that makes it hard to breathe.  I had an emergency CT scan today as it was suspected the cancer had moved to my lungs.  Fortunately, that wasn't the case and my lungs remain cancer free.  I am grateful.

However, there's definitely something happening and we don't know what it is.  There appears to be compression on lymph nodes that could impact breathing.  This could be a minor case of bronchitis.  This could be the beginning of pneumocystitis, an infection that hits folks with compromised immune systems.  I am now on a low dose antibiotic (one pill three times a week), as well as increased steroids to reduce inflammation.

The CT scan revealed progression in the liver and my liver is slightly more enlarged now (bloated).  I have random bouts of vomiting (happened this morning at the clinic with about 30 seconds warning!) because the liver is pressing on my stomach.  My chin is completely numb from neuropathy, as well as three fingers on each hand and both big toes.  The "dead" chin was enough for my oncologist to take me off my current chemotherapy.

I will return to San Francisco tomorrow for the new chemo.  For those who are counting, this is my tenth treatment regime in 4.5 years.  There's some degree of trepidation for me in this because historically speaking, one tends to be on treatments for less and less time as the routine goes on.  But then again there are many examples of good responses, even late in the game like this.  I am familiar with the new chemo (gemcitibine and cisplatin) and have heard good things about it.

One of the key people on my treatment team is Em.  She is the schedular and in spite of all the changes that happened today, she literally was right on top of them and got that CT scan on the books, lined up the radiologist to get the scan read and let the infusion center know that things were switching up.  Almost as soon as my oncologist said, "No chemo today, new chemo ASAP," Em had a new schedule going.  Additionally, she looked ahead through September to keep my original schedule as close to what we had in order to accommodate my family needs.  She is truly an amazing professional who has made it a point to come out from the back office to meet me.  She has even taken her break time to visit with me while I'm getting chemo!

I still have a month before we do a brain MRI.  I have mild symptoms that could be cancer activity or just side effects, so I'm trying not to second guess anything.

I'd say the biggest physical things I'm dealing with are breathing, fatigue and food.  I'm really hoping that the antibiotics and steroids kick in soon to help with the breathing.

Part of the food issue is the fact that everything tastes terrible.  Side effect of chemo!  I'm trying to listen to my body with the fatigue ... when it says, "sleep," then that's what I do ... I sleep.  When I have trouble sleeping, I do quiet activities.  I've gotten used to sleeping two or three hours at a time, regardless of what time of day it is.

The kids are in their third week of high school. Both are settling in well.  Rachel has a heavy class load, but balances that with one fewer class than most of her classmates.  She still enjoys her cheerleading.

Michael enjoys his classes as much as a 9th grader can and likes the flexibility of his classes.  I know he and Rachel enjoy walking to school together.  They are pretty amazing and are becoming quite independent.  Michael is now a part of a premier soccer league (something he's always dreamed of) and has a renewed interest in the sport.

Art continues to work hard to provide for us, but is also making time to spend with us at dinner and on weekends.  He and I continue to try to have a date night each weekend.

Writing is very painful for me due to nueropathy in my hands.  I'm unable to work on my Bible Writing Project for any length of time.  I'm reading along, though, where my writing left off ... a chapter of 1 Kings and a chapter of Psalms.  I used to hate the Psalms (I considered them to be quite whiney), but now that I'm in them, I can so very clearly see myself.  I think that's a true reflections of 2 Corinthians 4:16

"That is why we never give up. Though our bodies are dying, our inner strength in the Lord is growing every day."

Thank you for all you do.  I wish I could write thank you notes to everyone (My Southern roots are appalled that I haven't done so!), but I just don't have the energy.  Thank you for the meals, the gifts, the phone calls, the texts, the emails, the cards, but most of all, thank you for the love.  Thank you for showing up.

When you've lived with metastatic cancer for as long as I have, you tend to hear it all.  I've heard so many "miracle" cures that very little surprises me anymore.  Generally, I don't get emotionally invested ... to each their own ... but at at times, a story that breaks my heart crosses my feed.  This is such a story.

Don't get me wrong ... conventional treatments are not easy.  They have rotten side effects and can easily steal weeks of your already shortened life.  However, I will always stand by the fact that these treatments are the best we have for now and that we've come a long way from even 20 years ago.  We still have a long ways to go.

The beauty of conventional medicine is that it's been stared at, examined, analyzed and inspected for FAILURE long before its success is identified.  Researchers want to know what can go wrong with a treatment in order for it to be considered for use in the human body.  Clinical trials consist of three phases (all of which have different components to them) and the idea that a cure is being hidden due to money made by treatments is just ridiculous.  It is incredibly expensive to bring a treatment to general use and it takes a long time for a company to regain even the slightest profits on these drugs.

This article goes into ten reasons why it would be impossible to hide a cure like many conspiracy theorists postulate.  You can find an older article here. It's written from a researcher's point of view.

Proponents of "alternative" treatments often say buzz words like "all natural," "no side effects," "secret cure the government doesn't want you to know about," etc, etc.  This is why the story I referenced above simply appalled me on every level.

This is pretty much a laundry list of the most common "alternative" treatments available ... in Mexico ... because none of them have withstood the test of FAILURE.  There's tons of testimonials about successes, but no trials, not longevity of study and certainly, no scientific evidence to solidly back up these claims.  (A few people may have had success, but the vast majority have not.)  It's almost the equivalent of giving over a dozen "treatments" at once.

The whole idea of coffee enemas ... five a day?  Isn't that eliminating the supposed "benefit" of 13 juices a day?  Why put juice in only to remove it right away?  Our colons are NOT designed to have so many enemas and the damage will soon be seen.

When conventional treatments are recommended, the medical team is usually careful to go over side effects and benefits.  I know I've asked to see the studies and statistics for all my treatments and because they are so detailed, I'm generally pretty confident that I can trust the information provided.  I know there are exceptions, but generally speaking, there is truth in what my team tells me.

The disclaimer above?  (I won't advertise for this clinic.) It does nothing of the kind.  In fact, it pretty much says, "We don't guarantee anything, and we only go by word of mouth."  (Testimonials are NOT the same thing as clinical trials.)

On July 5, I read this update:

I gasped aloud when I read this.  I literally said, "She is dying now.  They are killing her." I've had parasites before from living in the Far East ... they do not take a year to show up.  Dying cancer cells do not cause anemia or low platelets.  Living cancer cells do. This woman was blatantly lied to by the "board certified team of doctors under the leadership three brilliant and passionate Americans who have all taken cancer treatment to another level, and are changing the medical industry and the world."  THESE doctors are the ones who should be challenged in what they are doing in the name of making money.

I don't know this woman or her family.  I do know she is the second patient I had read of going to this clinic within a month's time frame.  The first woman died with a week of returning home and this woman died the night of July 5, the same day this above post was written.  There will be no testimonial on her behalf.

Nothing could have saved them. (Both women had metastatic breast cancer, same as me.)  They were dying anyway and conventional treatment failed them.  We need so much more.  My heart breaks though, that they chose to die thousands of miles away from home without a full support network in place.  They both chose to be away from their children.  Their families both continue to say this was the right medical choice for them (Note, no medicine involved.) and that if they had done this from the beginning, their loved ones would still be with them. 

Therein lies the fraud.  Clinics such as these ARE truly about the money and they take heartless advantage of people literally gasping for their last breath.  Tens of thousands of dollars are needed for these clinics (who can't even maintain clean water) and when someone dies, more tens of thousands of dollars are needed to transport bodies home.

I'm angry and I'm bitter.  I know that what we have isn't enough.  However, snakeoil is not the answer.