Megan Jones, 10/4/1972 - 9/6/2011

Hello Everybody,

I am sorry to bring you sad news, but Megan passed away around 2:00 on the morning of September 6th, 2011.

I know that this news will be a shock to many of you, especially if you were aware of how often Megan bounced back from previous low points during her journey with cancer. The relatively quick decline of Megan's health over the past several months just seemed like a bump in the road, but in hindsight it was an indication of where the road was going.

I can assure you, however, that Megan's passing was peaceful and she was comfortable and with loved ones at the time.

In lieu of flowers or other condolences, I am asking that a donation be made in Megan's name to any of the following organizations:

Cancer Support Community: http://www.cscpasadena.org/
Habitat for Humanity, San Gabriel Valley: http://www.sgvhabitat.org/
Ohio Historical Society: http://ohsweb.ohiohistory.org/
Pasadena Humane Society & SPCA: http://www.pasadenahumane.org/

Lastly, I invite you to view the slideshow that we played at Megan's memorial party, found in the link below:

http://www.youtube.com/watch?v=4kfkWTxI9S8

Thank you for all your support over the past couple of years. Megan did not publish updates to this blog very often, but putting herself out there helped us feel less alone in her journey, and for that I am forever grateful.

Take care, and thank you, again.

Jonathan Martinez

Pressure Drop

Happy New Year!

Feeling good these days, and trying to live between these two lines:

The proper function of man is to live, not to exist. I shall not waste my days in trying to prolong them. I shall use my time.

~ Jack London

I find nothing reproachable in those who rage mightily against the dying of the light.

~ Stephen Jay Gould

Here's some classic reggae for your enjoyment:

http://www.youtube.com/watch?v=MlciGKIAdhE

The High Road

These days I'm feeling good and wanted to thank everyone for the positive vibes, prayers, good thoughts, and messages! I love getting back in touch with everyone, although I continue to fall behind on my correspondence. Just know that I love it. Thank you!

New Insurance
Since January 1, 2010, my new insurance - Anthem Blue Cross PPO - seems to be covering the very-expensive out-of-pocket costs I was incurring for some treatments! Instead of $3700/mo. for oral medication (Tykerb), they are charging me $15/mo. copay! No questions or problems, either. Additionally, they have covered another stereotactic radiation procedure in February, 2010 - again, no questions asked! It may be almost double in premium ($800/mo. instead of $400/mo.) and a $2,000 deductible a year, but so far, it's a lot less than I was paying! Also, I switched to allow me to see any doctor I choose, almost regardless of any "network", and that seems to be working, too. So good news all around there! As anything could happen, I'm just enjoying the current "non-problem" situation, but not counting on a future that does not include problems with insurance. As I have learned, it seems to be the rule, not the exception, that there are problems with doctors, staff, insurance, tests, etc. Yuck.

Latest PET/CT scan and blood results
My latest PET/CT scan still shows "Near Complete Remission" (as my onc. likes to write) from the neck down. Blood is drawn every three weeks before treatment (iv Herceptin), and it is "unremarkable" - yea! My CEA - the broad tumor marker that stands for Carcinoembryonic Antigen in case you're interested - is lower than ever. When I was diagnosed in January 2009, this number was 31.4, and is now 1.3. The normal range for anyone is 0 -4.7. It's been decreasing every 3 weeks and is now the lowest it's ever been. I also get checked for another tumor marker, the CA 27.29, which is supposed to be more sensitive to breast cancer, and it was originally 265 when I was diagnosed. It is now 15.3, and the normal range is 0 -38.6. So this is all very good news! I hope it continues this way!

Half-Marathon
In February, Jon and I did the Pasadena half-marathon. I loved it and was so happy to be there and doing it, but it was grueling in parts. I trained with a friend, but we only made up to a long-run of 8 miles beforehand, so I knew the 13.1 mile race would be difficult! Also, my friend had an injury that made it impossible for her to participate in the run, so Jon did it with me! Yea for that! Unfortunately, he got an ankle injury around mile 3, which made the run even more difficult. But we finished, a little over 3 hours after the start, and it was a fun goal and an emotional achievement. Now I need to get another goal b/c I need more motivation to get out there! Maybe some smaller 5Ks in the near future.

More Stereotactic
Also around the time of the half-marathon, my neuro. looked at the brain scans and definitely thought he could identify "new growth" which necessitated some brain radiation. I took his advice to do more radiation, but not his - and other docs' - recommendation to do "whole brain" this time. Whole brain is misleading anyway b/c they just focus on the lesions - not the whole brain - and do more traditional radiation from the outside, including smaller doses over something like 4 weeks. I said I wanted stereotactic again b/c there was a slightly smaller risk for side effects. The docs recommended traditional radiation to destroy the cells/lesions we couldn't yet see on the scans, but I'm still hoping to break that blood-brain-barrier on my own, give my immune system its best shot, and keep me entirely side effect-free, so we'll see how well I do! The February stereotactic brain radiation was performed the days immediately preceding and following the half-marathon, but I felt nothing. It was great. I'm glad I made that choice against traditional radiation, I just hope it was a good one in the long-run.

Headaches
Currently, I'm on a two-week dose of steroids (Decadron), 6 mg./day broken up into a dose of 2 mg. w/breakfast, lunch, and dinner, to get rid of what my neuro. thinks is inflammation on the largest treated lesion in the brain (cerebellum). Since I stared the steroids, I have not been getting headaches - as I occasionally was for a month - so I think they're doing their job. I asked the neuro. if I could have a smaller dose of steroids than he originally recommended, and he lowered the dose, which is very good news for me. The side effects I've had from the steroids these last two weeks include: sleeping less (5 instead of 8 hrs.), some sugar/food cravings, quick-to-anger once or twice a day, some mild euphoria, and feeling "revved-up". I've tried to use the good side effects to my advantage by being industrious, using my new-found and regular will-power/discipline, and making "good" choices. So I've been doing a "two-week experiment" with a very good diet, all the right supplements, green-juicing, yoga, acupuncture, etc. to help the steroids de-activate the inflammatory response/pathways. Seems to be working very well, but I'm anxious to get off these steroids, since one is not supposed to stay on them for long!

Immunotherapy
I continue to do immunotherapy with the integrative medicine MD in Santa Monica. So far, I've received this therapy every week since February, and next Wed. will be the 18th treatment. I go to the doc's office to receive a small injection of GcMAF activator (Gc protein derived macrophage activation factor), which is a nano-particle and can be injected in the vein or muscle. I choose to go to the doc and have it done in the vein to get the best possible results. The head researcher is Dr. Yamamoto, who works in Philadelphia and Japan, and you can see some of the latest published research here:

http://www.ncbi.nlm.nih.gov/pubmed/19031451?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

The idea behind the macrophage therapy is that cancer patients make a certain enzyme (Nagalase) which turns off macrophages, a necessary white blood cell in the immune cascade, and allows the cancer cells to grow and thrive. It's yet another idea in a lot of the research I've seen out there that talks about how cancer makes a "hospitable" environment for itself and uses the body to help it grow by changing the micro-environment to its liking. Everything I try to do to effect the cancer revolves around making a more hostile environment for the cancer to thrive, and get my body to do what "normal" bodies do to cancer cells. The idea is that everyone has cancer cells in them all the time, it's just that a regular immune system usually recognizes these cells as foreign and makes them die. I think in technical-speak it's called "apoptosis", and I'm always trying to encourage this regularly-planned cell death to take place! I also try to turn off the inflammatory and glycemic pathways that may be activated in my body, to help make it harder for the cancer to overwhelm my system again. So, for example, I eat a low-sugar, low carbohydrate diet, but include more green juicing and movement. It makes me feel better everyday, I get to take some action, and I think it is having a positive effect!

So I'm trying to use this two-week steroid-induced psychosis (it's like starting everyday with a strong cup of coffee, and then there's another around lunch, and then dinner!) to make better choices and get things done. One thing I've been able to do is identify how I like feeling, and how I'd like to feel more of in the future. Sounds straight-forward and easy, but it's something I hadn't done and don't usually do. Also, I tend to fall mostly in the trap of subjectivity and relativism, so I can rationalize/make excuses for myself and everyone's' behavior and choices! But this time I came up with some things I like for myself and want to cultivate more of. Here they are!

I want to do more of this:
- Forget about my diagnosis and everything I've been told that means
- Live knowing there are no rules and there is no ground
- Feel healing occurring instead of fighting disease
- Think about the self recognizing the non-self
- Be aware I am living a deep, richer life b/c of this diagnosis
- Know that I have a great life!

As always, my deep gratitude for you and all the positive energy and attention you have put in my direction. My life is better for it!

Here's the song/video for the subject title by Broken Bells, which is Danger Mouse and Shins' lead vocalist & guitarist James Mercer, and one of my new favorites:
http://www.youtube.com/watch?v=TFkDCU2b7Ow&feature=channel

Hope you enjoy!

It's the Most Wonderful Time of the Year

Hopefully, most of you have been reading my short updates on Facebook, but I apologize for the extended period of non-blogging! I've realized I enjoy reading others' blogs so much more than writing my own. But this stagnant blog has brought comments from friends like, "You know, the fire is over!" (a reference to the picture posted here since September), so I will post more regularly. At least I'm getting one more post in before the end of the year!

My health is very good these days - I'm feeling great and have been able to do a lot of holiday activities. Decided not to travel - was considering driving to Ohio and Oregon to see families - and although I miss our families, I know this was the right choice. I've been told that "stress is cumulative", and I've been feeling that way recently. An intermittent eye twitch and small anxiety attacks have been keeping me cognizant of making choices to limit activites (even the "good" stuff). Seems to be working, and I'm taking things slower and staying relaxed.

Recent blood work (I have blood drawn every 3 weeks) shows the tumor markers are still within the "normal" range, and my last PET/CT scan showed continued "near complete remission" from the neck down; however, in October, a brain MRI showed a little growth of the 2 previously-treated lesions, and 2-3 new small growths, all in the cerebellum. We were moving forward to schedule some more radiation, but I'm happy to report that a brain MRI performed last week showed stability in the growths - actually, the neurologist couldn't see the 2-3 new growths that were visible last time. Very, very nice to hear. Now I'll just go in for an MRI in 6 weeks and we'll see what it looks like.

On the subject of radiation, I've been reading a lot about the dangers of CT scans - seems depending on the calibration of the equipment, radiation from a CT scan may equal hundreds of x-rays and increase future cancer risk. My oncologist recommends I have a PET/CT scan every 3 months, but I've pushed it to every 4 months, which means 1 less a year. The latest research includes all sorts of scary findings that different hospitals, even different machines in the same hospital, are exposing people to various levels of radiation - some well beyond what is necessary to perform the scan. Researchers are quantifying the future cancer risks from multiple CT scans, and they're significant. Any traditional treatment choice involves a risk-benefit assessment (chemotherapies have risks for causing secondary cancers, too), but most docs will tell a patient, especially one with active disease, that frequent scans are necessary to catch disease progression before it does any damage. My new plan is to ask radiologists to give me the radiation output numbers for the CT machines. Even if I can't confirm that the machine is properly calibrated, at least I'll let the docs know someone is paying attention.

Unfortunately, I do have a new condition to contend with. Herceptin and Tykerb can both cause a decrease in heart function (the antibodies in the drugs turn off cancer cells, but also turn off cells in the heart). My latest echocardiogram showed heart function down 10-15% from the baseline. Good thing is - this condition is almost always reversible. To remedy the lowered heart function, I'm taking a blood-pressure medicine that should make it easier for the heart to pump. If the blood pressure med doesn't work, I may go off the Tykerb and Herceptin regimen to allow my heart function to return to normal, after which I will get back on the regimen. Luckily, I don't have any symptoms of the decrease in heart function (e.g., shortness of breath or swelling in the feet).

In October, I added another doctor to my arsenal of specialists. He's an MD practicing internal medicine and also "integrative medicine" - the prevention and treatment of disease through the use of diet and supplements as well as traditional medicine - also known as "orthomolecular medicine", I believe. Unlike any of my other doctors, this one doesn't tell me, "There's nothing you can do," and "Eat anything you want." When I hear that stuff I just feel defeated - it affirms my perception of the medical establishment as a cult, or a big pyramid scheme with the drug companies at the top. This new doctor has given me science-backed recommendations for diet and supplements, and I'm happy to have this kind of professional support in my life now.

Come January 1st, I should be covered under a new insurance! I took advantage of my employer's open enrollment, and switched from CA Blue Shield HMO to Anthem Blue Cross PPO. Here in California, Blue Shield and Blue Cross are totally separate companies. The PPO has higher monthly premiums and slightly higher co-pays, but a normal-ish deductible. I made this change to be able to (hopefully) see any doctor I wish, and to increase the chances that recommended treatments will be covered. I spoke with many benefits and insurance representatives and read a lot of materials and was assured that, since there would be no "lapse" in coverage, all my current treatments would be approved and covered. I thought maybe pre-existing conditions exlusions could be invoked here, but I was assured this would not happen. I'm still nervous.

My battle with CA Blue Shield is moving very slowly, as BS drags its heels to respond to the latest requests for "retroactive authorization". I am still very hopeful that the denials will be overturned. By switching insurance, I am hoping to avoid any future denials of treatment. In fact, Tykerb, the drug I am currently paying for out-of-pocket, was recently proven to have synergistic cancer-fighting effects with my other treatment, Herceptin (which insurance is covering). This new research should bolster our request for insurance coverage, since I've been denied previously b/c of the lack of research showing positive results! After the New Year, my onc. will be submitting an authorization request to my new insurance, so keep your fingers crossed!

And finally, Healthcare Reform. Although I am unhappy that the Senate bill does not include a public option (and it looks like inclusion of any public option will mean failure of the bill), I'm encouraged that it still includes provisions to restrict insurers from revoking coverage at a moment's notice and significant limitations on pre-existing conditions exclusions. And while I'm elated that millions of uninsured people will have access to affordable healthcare, I am deeply disheartened that the treatment of the newly-insured will still be determined by insurance companies, who are concerned about shareholder profit and not effective and efficient provision of healthcare.

My deepest gratitude goes out to everyone who has supported us this year. Thank you from the bottom of our hearts! Happy Holidays!

Fire! Fire on the Mountain!

We're hunkered down and watching as the largest fire in L.A. County since 1897 rages just a few miles from our house in Altadena. Since last Wednesday (8/26) the fire has been spreading and is now estimated at 140,150 acres (219 sq. mi.) - almost all inside the Angeles National Forest. So far no evacuation orders for our block, but a previous evacuation order was issued for an area just a few streets west of us. Fire fighters are stationed at the north end of the streets that abut the forest, watching the hills and ready to give us the order. There's been little wind and the smoke has been heading away from our home, but there have been a couple days of intense smokiness inside the house.

On Saturday we packed up our 2 cats and headed south for the day. We came back home that night after the smoke cleared out, but have kept our bags packed. Yet another surreal situation this year that I thought I would only see in movies and Internet chain questionnaires: "If you had just a few minutes to gather up your most valuable possessions, what would you take?" It turns out I don't care about photos, jewelry, old letters, etc. What I seem to care about now is all my medical paperwork. Très romantique, right? Since I can't bring filing cabinets, four paper grocery bags stuffed with files are lined up by the front door, ready to go.

One of our neighbors maintains a great community blog, which has been the best source of information about the fire (way better than any "news" outfit): www.altadenablog.com

Although the blog host posts regular updates, the best information is in the comments section, as people write the latest information they've received directly from fire personnel and report which way the fire is moving. The blog is building community and connections here that I think will last beyond this crisis.

Did you know that the lungs are the source of chi in the body? I did not know that. I was informed of this fact by my acupuncturist when I tried to cancel my appointment this week and was told it was imperative that I come in! I'm not coughing or feeling anything in my lungs, but there is ash in the air (and on the lawn and on the car), so I'm staying inside with windows closed (and I went to my appointment).

My health has been good - still some discomfort around the ribs from my surgery in June, but otherwise I'm okay. I'll be going in for blood tests/treatment next week, so we'll see if the tumor markers are still low. And in a couple weeks I'll have a PET scan and that will show any new changes.

A producer from the program "NOW on PBS" contacted me and said they were interested in my story for an upcoming healthcare reform episode. Not sure if anything will come of this, but she said they might come out at the beginning of Sept. for filming. She found my story on the Obama Healthcare Stories website.

Here's a link to the subject song by the Grateful Dead:

http://www.youtube.com/watch?v=YdO_CmfFKYE

Which Side Are You On?

Jon and I attended our Congressman's (Schiff) healthcare town hall night before last.  I expected a couple hundred people packed into an auditorium, a few cops, a news van or two, and some scary protesters (they'd already burned an effigy in Maryland - what would they do in L.A.?).  

Well we didn't see any burning effigies, but what a wild scene!  The event was moved out onto the street and over a thousand people were already there an hour before it was scheduled to begin.  All the local media and CNN were there, and cameras were all around filming the various battlefront lines.  

It was curious that, instead of creating a line in the sand with opposing forces on opposite sides, advocates and opponents were spread throughout the crowd.  Shouting matches erupted every hundred feet or so, and heated one-on-one conversations were throughout.  We didn't feel much like engaging the folks waving the "Obama is Hitler" signs, or the guy whose "Obamacare" sign had a hammer and sickle for the "c", but god bless the people who did.  And I was heartened to hear some very respectful and meaningful conversations.  

I don't want to discount the real concerns folks have about healthcare reform, but at this event it was my impression that, more than opposing healthcare reform, some folks were there to oppose Obama (perhaps for reasons they'd rather not say), and this was the issue du jour.

When I began considering attending the town hall, I was envisioning a mic in the middle aisle where one could just unload opinions at the Congressman for three minutes.  Turns out they had question cards to fill out, and I added mine to the box almost completely full of others' cards.  There was a part of me that really wanted to speak because I think my story's untouchable - an example of our fatally-flawed healthcare system that everyone can agree on!  I'd been invited to speak at healthcare forums, but declined because I was always in some stage of recovery, plus I was worried I might get emotional, lose my train of thought, etc.  But lately I've been feeling well, and have talked through my fears enough that I thought I could at least read a written statement.

We didn't stay to hear if my question was read, but I did get a chance to speak in an interview with Sonali Kolhatkar, host of the radio program "Uprising".  Here's a link to the segment: http://uprisingradio.org/home/?p=9389  You can click on "listen to this segment" and hear my two cents about six minutes in.  

This was the first time I put myself out there in the public healthcare debate, and I was a little worried about it.  Up until now, I've been putting my story on the internet and watching others respond.  The story receives mostly supportive responses on the web, but a healthcare reform advocate posted it to Slate.com, and some opponents took the opportunity to say some nasty things!  Like, "Just not worth it.  People are beings and beings die.  This is the cycle of life." and  "Sounds like she is already dead."  Woo-hoo!  Can't wait to jump into that thread and say, Boo!

So all this activism, and the fact that I watched Pete Seeger's 90th birthday jamboree last week, has put me in the mood for a good protest song!  Been singin' 'em all week!  Here's one of my favorites:

"With God On Our Side"

Bob Dylan w/Joan Baez in 1964

http://www.youtube.com/watch?v=yQ9tevsY17s&feature=related

Feeling the Love

I am in awe.  Completely overwhelmed with gratitude and happiness.  Three months ago I thought $100,000 in 100 days? - sure, why not make a pie-in-the-sky fundraising goal.  And now I'm astounded as the end date for the campaign is here... and so is $100,000.  

Because of your donations I have been - and will continue to be - able to afford the treatments my insurance company has denied.  These treatments have greatly reduced the cancer in my body, and I'm feeling very good, physically and emotionally, as I sit here and type.  

Although the funds raised have a direct effect on my health, I think of equal and possibly even greater effect is the outpouring of love and support.  I don't know how to have enough gratitude for all of it.  It has changed my life.  People would find it hard to believe that after a stage IV cancer diagnosis I could be the happiest I've been in my life, but it's true!

On top of the amazing life-affirming and loving notes from family and friends, I've received hundreds of supportive messages and donations from strangers, some from places as far away as Costa Rica, New Zealand, and Switzerland.  I've just been blown away by this response.

I know that all the positive messages, prayers and good energy directed at me have improved my condition, and I am extremely thankful to everyone who has helped me in this way.  Doctors can't quantify the effect of positivity on a patient's prognosis, but they know it helps.  I know it helped me very much, and continues to propel me towards more healing and recovery.

I want to write every expression of gratitude to everyone because "thank you" is just not enough.  So here are some more!  Danke!  Merci!  Much obliged!  Cheers!  Na gode!  Xie xie!  Domo arigato!  Mahalo nui loa!  Well, that was a little more satisfying (for those of you playing, yes, that IS Hausa!).  But what I really want to do is give everyone a big hug and say, "I'm so happy you're here!"  And I'm so happy I'm here!

Muchas Gracias.