July 30, 2012

Acupuncture with Susan last Friday.  Continuing to feel well and healthy and very un-sick!  I can’t emphasize how grateful I am for this normalcy, because I know full well the eventual ramifications of this disease.  I’m thankful for every day that I can go to work, labor in the garden, take Jake on long walks – anything that doesn’t involve cancer.  

I made the cognizant decision a while ago to make this cancer thing an insignificant part of my life.  I mean, at this point, why shouldn’t I?  It’s not affecting how I feel, it’s not influencing how I live, I’m not undergoing chemo right now – so why shouldn’t I tuck it away on the back burner?  Susan and I had this discussion on Friday.  She holds the belief that I should be fully aware at all times of this unwanted guest who’s set up housekeeping in my lymphatic system and bone marrow.  

I explained that I am indeed acutely aware that I have Stage IV Non-Hodgkin’s Lymphoma – it’s one of the reasons I frequently utilize the full term when describing it – and it’s never far away in my daily consciousness.  Every day, I read or research something new about it (or blog about it).  However, I’m not giving cancer the power to dictate how or what I do.  

Instead, I’m choosing to give power to:

Balance.
Levity.
Joy.
Forgiveness.
Beauty.
Mindfulness.
Strength.
Relaxation.
Tolerance.
Peace.

And, the biggest of all:  letting go. 

People and issues and past hurts that were monumental not very long ago are mere blips on the radar screen.  To be sure, I dwell, ruminate, and stew like every one else, but it’s so much easier now to give the matter due attention and then just let it go.  Life truly IS too short, ya know?  Why would one choose to fill their mind and spirit with negatives and grudges and damaging stuff?  Because that’s exactly what it is: a choice.  We all make the choice to either be pissed off or weak or bitter – or to sac up, face it head on, and roll with it (whatever “it” may be at the moment).  

Now, given that our time here is finite, how would YOU rather live?  

For me personally, the role of wounded little bird just never fit very well.  

So, I adjust my allegorical nuts, don’t give cancer any power, and make sure I do everything I can to keep it an insignificant part of my life.

And life is GOOD!

 

Jake thinks so, too!

July 17, 2012

I’m feeling scary well and living a perfectly normal life.  I am so grateful that for me, right now, Stage IV cancer really doesn’t mean anything in terms of how I feel, what I’m able to do, or quality of life, aside from the occasional fatigue and body aches.  I absolutely do not take this period for granted, because I know it will change at some point.  I just don’t know when.  

I think the major contributing factor of why I’m feeling so well – and not allowing any covert stress or anxiety sneak in and affect my health – is due to being proactive and not just passively doing “watch and wait.”  I’ve never really accepted that term.  It’s as if one is in a state of suspension, forever waiting for the other shoe to drop.  That’s not a good life philosophy.  “Watch and live” is much more apropos, and it’s helped tremendously during these three months since diagnosis.  

A big part of the “watch and live” tactic is the continuing treatment I’m receiving from Susan, the awesome acupuncturist / naturopath / nutritionist.  The newest weapons Susan has armed me with are OncoMAR and OncoPLEX…..

…..and you can bet I did copious amounts of research on them!

Nine separate reports on OncoMAR -
and there are many more that I read but didn't print!

OncoMAR (also known as Avemar) is fermented wheat germ extract that carries out a critical function.  Abnormal cells (including cancer cells) can build a protective “sheath” around themselves in the form of a surface molecule that disguises them from attack by the immune system, allowing them to continue to develop and grow undetected by the body’s own natural killer (NK) cells.  Fermented wheat germ extract / OncoMAR suppresses the abnormal cells’ ability to generate that surface molecule which masks them from detection, so that the NK cells can recognize them and do their job.

(If you couldn’t already tell, this shit is just fascinating to me!)  

OncoPLEX is super-packed with sulforaphane, a naturally-occurring compound in broccoli that supports “cell suicide” (apoptosis, or PCD - programmed cell death) in cells that have the potential to mutate.  If you recall your basic cell biology, cancer cells run rampant because the DNA becomes damaged or mutates and the cells don’t die when they normally should.  OncoPLEX is like the Dr. Kevorkian of cell suicide, facilitating it to happen.  YAY for cancer cell apoptosis!  

My next appointment with Dr. Glenn the oncologist is a month from today, on August 17.  Since my last appointment with her in May, I’ve integrated the following into my life:  

• Education, education, education.  You can never learn too much about the creepy-ass disease that’s decided to make your body its home.  
• Weekly acupuncture treatments to empower my immune system and to try and keep this cancer thing indolent.  
• Daily OncoMAR and OncoPLEX.  
• Daily Green Goodness smoothie (kale, chard, carrots, blueberries, raspberries, whey protein powder, milled flax seed) – a whole buttload of nutrients, antioxidants, and Omega-3.  
• Eliminating most meat and dairy.  Well, with the exception of my beloved Combo #4 from Nando’s (cheese enchilada and taco) and my nightly bowl of chocolate chip cookie dough ice cream!  Come on now!  
• Incorporating even more healthy grains into my diet than before, like sprouted grain pasta and cooking with lots of lentils for protein and quinoa for its antioxidant phytonutrients.  
• Snacking on sunflower seeds and Brazil nuts for the antioxidants and nutrients, and for the selenium that slows the propagation of cancer cells.  
• Eliminating bottled water and using a water filter.  Do you know how nasty San Diego’s tap water tastes?!?  Add that to the cancer-causing BPA that can leach out of plastic bottles into water, and a household filter and aluminum water bottle make a lot more sense.  
• Using organics whenever possible.  
• More mindfulness.  More gratitude.  Less stress.

I’m not sure what testing, if any, Dr. Glenn will order at the August appointment – blood work, CT or PET scan, or ???  I’m still a newbie in Cancerland and don’t know what to expect in terms of monitoring.  I’m curious to see if three months’ worth of changes and better choices has facilitated any improvement.  Don’t get me wrong:  I’m fully aware that while my form of NHL can be treatable, it’s not curable.  But, if we can keep it from progressing, or knock it back a little, then that keeps toxic treatments like chemo and its side effects off the table for a while longer.  

Regardless, I can say one thing for certain:  I am so much healthier with Stage IV Non-Hodgkin’s Lymphoma than I was before!

July 5-6, 2012

I had to do it.  I had to force myself to venture out of the cocoon I was beginning to swathe myself in, the self-imposed travel aversion I had been weaving around my psyche.  I realized it was becoming a problem when I was saying “no” to trips more than I was even saying “maybe.”  That’s just not me, and it was time to step up and reclaim my wanderlust!  

So it was off to Big Bear for an overnight Cancercation.  I was badly in need of a day off from cancer – from research and reading and stressing – but needed to stay somewhat close to home so my anxiety level wouldn’t skyrocket.  Big Bear was only a couple hours away with an abundance of bed-and-breakfast inns (no camping this time – if I was going to be away from home, it was gonna be as foo-foo as possible, dammit!).  

I booked a room at Gold Mountain Manor, a magnificent log mansion built in 1928, and hit the road.





Stunning July day at Big Bear.



Gold Mountain Manor.

Above the Southern California smog line, I regained my peace, my balance.  Apprehension about venturing away from home vanished, replaced by seriously blue skies punctuated by bright white afternoon clouds, sparkling clean air, and brilliant sunshine.  Trees.  Water.  Birdsong.  LIFE.  

Cancer?  What cancer?  I was again normal.  I wasn’t “newly diagnosed with Stage IV Non-Hodgkin’s Lymphoma.”  I was just me, on a roadtrip and enjoying a few summer days in Big Bear.  And it was fucking awesome.

A friendly local.....

Loving the beautiful gardens and grounds of the Manor.

Soaking up the gorgeous mountain sun on the veranda.

Looking back toward the lake while
riding the ski lift to the top of Snow Summit.

So what was my take-away from this little adventure?  A whole bunch of “nevers.”  Never permit fear to take hold.  Never let cancer dictate what I will or will not do.  Never allow cancer to prevent me from doing something that I’ve always loved.  And never, EVER give cancer any power.  

I view this as one of many cancer tests, to see how far I would back down, how much of my life I would give up because of the fear that this cancer thing tries to incite.  

Well, I got news for you, lymphoma: 

July 1, 2012

During the weekly acupuncture appointment with Susan on Thursday, I posed a question to her about an issue that’s been vexing me lately.  

The background:  Since being diagnosed in April of this year (and finding out a month ago that it's Stage IV), I've become pretty much a scaredy-cat.  Although I'm watch-and-wait and asymptomatic (except for the achy bones at times and occasional severe fatigue), I've become uber-reluctant to venture away from home except to go to work and run errands.  My passion has always been travel and I've always had a vacation or camping trip in the works as something to look forward to.  But right now, I just don't want to be away from home.  It’s rare that I’ll go camping, even with my beloved “Stella” parked in the driveway patiently waiting for our next adventure.  Right now, I'm content just to hang with my dog and my books and my garden.
 

Stella, BTCT*
(* Before This Cancer Thing)

What happened to my adventurous spirit?  I’m the one who hates to fly but who traveled to Italy with two girlfriends, and who learned to tow her own trailer solo because I love to camp and don’t want to be dependent on anyone else.  Where'd my boldness go?  Is it a heightened sense of vulnerability?  Maybe a fear of this cancer thing rearing its head far away from home?  

Susan, in her wisdom, put it simply:  I’m nesting in the comfort of the familiar to allow my body and mind time to adjust to this reality.  Indeed, my world was kinda turned upside down by this diagnosis, so a hankering for the familiar and the routine is a natural response.

Nesting is a good thing.....

OK - that’s an explanation I can live with.  As long as I know that my trek-love is just on hold for the moment, I’m good with that.  I can relax and let my mind and body do the work of adapting to this new normal.  I know that when the time is right, I’ll venture out again.  

In the meantime, I’ll just have to fill that travel void with some other passion.  Hmmmmmm…..Any guesses on what could that be?

Purse-love!

A brand new creamy butter yellow Coach bag -
just as good as a vacation!

June 23, 2012

Weekly acupuncture appointment with Susan yesterday.  Feeling good, continuing (for the most part) with the healthy eating - nothing to complain about!  Ordered a new piece of healing juju to add to the growing collection:

I love me some Etsy.com!

Bummer of the week:  I finally took myself off of the bone marrow registry of the National Marrow Donor Program.  I joined several years ago when a local teacher needed a bone marrow transplant and was looking for a match.  Ever since Amanda’s dad Glenn endured a stem cell transplant when he was fighting multiple myeloma (likewise a blood cancer), I had wanted to do something to honor his life and hopefully help someone else in the process. 

Park Ranger Glenn and his little future Park Ranger Amanda
Grand Canyon National Park - April 1987

So I joined hundreds of other San Diegans at a donor drive held at the teacher’s school, filling out paperwork and having our cheeks swabbed, and was placed on the national registry not only for this particular patient but for anyone, anywhere, for whom I’d be a potential match.

National Marrow Donor Program
donor identification cards

When testing recently confirmed that the cancer was in my bone marrow, I knew I’d have to remove myself from the registry, but I had been avoiding it.  Why?  Because I was pissed that this cancer thing was making a decision for me.  Because this cancer thing was getting in the way of possibly helping someone.  And because this cancer thing was telling me I couldn’t do something.  I know it’s a childish reaction, I know it’s illogical – but whoever said I was a rational adult?!?!  I’ve never liked being told “NO!” by anyone – parents, boyfriends, nuns, husbands – but being told “NO!” by some stinking little cowardly cancer cells that don’t even have the balls to be symptomatic is just a bit hard to take.  

So, reluctantly, I logged on yesterday to www.marrow.org and updated my record.

Why am I blogging about this?  Because I’m hopeful that someone - or, better yet, numerous someones - reading this will take my place (so to speak) on the registry and make themselves available as a potential marrow donor.  Go to www.marrow.org and click on “Join the Registry” to learn more.

Hey lymphoma:  NO MORE OF THIS “MAKING DECISIONS FOR ME” SHIT!  Got it?

There.  I’m better.

We now return to 

June 16, 2012

Another acupuncture appointment with Susan yesterday, and this time she addressed my issues of periodic bone pain and god-awful fatigue.  I’ve had sporadic achy bones for months before the diagnosis in April; I saw my primary physician late last year because of it, and after running x-rays he found no reason for the aches.  Little did we know that Non-Hodgkin’s Lymphoma was quietly skulking about, waiting to be discovered during the kidney stone shenanigans in March!  The fatigue can be fierce at times – if I could sleep continuously for days, it still wouldn’t be enough.  Most days I have an abundance of energy and others it’s a struggle to stay awake until I finally crawl into bed around 6:PM.  Such a glamorous life I lead!

I posted my fatigue issue to one of the lymphoma forums I regularly visit, and one member theorized that it may be due to “diagnosis depression.”  I had never even considered that possibility, because I haven’t been “depressed” since receiving the diagnosis.

However, there is a LOT of brain action that goes along with a cancer diagnosis.  Even the positive stuff – taking on a whole new education in biology and cellular dynamics, researching about nutrition and incorporating all that into daily living, etc. – takes a lot of mental power.  BUT, throw in the negative stuff – dealing with the insurance company is the biggest thing that comes to mind – and THAT is a tremendous brain drain.

For example, I’m still dealing with the insurance and ambulance companies over the bill for the ride to the ER in March for the kidney stone.

That was one expensive 6-mile ambulance ride!

The insurance company paid about $1,500 of it, but left me with nearly $500 of “denied” charges.  Their reason?  I didn’t obtain preauthorization for things like the EKG in the ambulance and the Zofran the paramedic gave me to try and stop the vomiting on the way to the ER.  Um, seriously?  Let’s conduct a quick review of the facts:  It was an EMERGENCY, I was alone, and I was semi-conscious and in tremendous pain by the time the ambulance got to my house!  And I was supposed to call the insurance company during that time and get preauthorization for things the paramedics felt were necessary?  Needless to say, I’ve filed an appeal with the insurance company to get them to pony up the balance.  In the meantime, though, I’ve had to pay that bill, because the ambulance company doesn’t care that there’s an appeal going on – they just want their money.  And THE LAST thing I want is to go into debt or have my credit rating compromised because of this cancer thing. 

The latest challenge in the insurance game is the bill I got today from the diagnostic company for the bone marrow biopsy in May.

The latest love notes.....

Ugh.

Yep, you’re reading that right:  $6,670.00 for a single procedure.  Now, the maddening thing is that the diagnostic company is saying that they billed my insurance company but the claim was denied:  “The service is not covered by this payer/processor.  Claim has been transferred to the proper payer/processor for processing.”  Excuse me?  What other “payer/processor” do I have?  I only have ONE insurance company!  And if they’re saying they didn’t pay it and have transferred it to someone else, WHO did they transfer it to?  I called the insurance company as soon as I got this bill in the mail today, but they’re closed on the weekend so the battle will have to wait until Monday.  Which brings me back to the ambulance ride:  HOW could I have obtained preauthorization in the first place since this occurred on a WEEKEND and the insurance company isn’t even open on the weekend?  Aaaaarrrrrgggghhhhhhh!!!!!

Fatigue because of brain drain?  Yeh, you betcha!

June 9, 2012

Another visit to Susan the acupuncturist yesterday, and it was good to hear her say that my energy was better than last week.  It should be!  I’ve been working my ass off to get it that way!  Some changes (radical, for me) that I’ve been incorporating over the past several weeks:

● An oxygen, antioxidant, and Omega-3 rich “Green Goodness” smoothie every day.  Whipped up fresh in the Magic Bullet first thing in the morning, it’s jam-packed with organic kale and chard, blueberries, carrots, strawberries, sometimes mango or raw sunflower seeds, and always a scoop of milled flaxseed and a scoop of whey protein powder.  It looks like a big jarful of pesto, but I graze on it throughout the day and can just feel my cells getting gratefully oxygenated!

● Snacking on healthies throughout the day - celery with almond butter and sunflower seeds, Brazil nuts, grapes, bananas – rather than the cookies and chips and donuts and crap I had been eating.

Typical work-day menu.

● Flushing my system with lots more water.  I must be descended from camel stock, because I used to go days without drinking any water.  Huh, any correlation between that and the freaking KIDNEY STONE that started this whole adventure in Cancerland?!!!?  After that painful debacle, I not only began drinking water and lots of it, but put a water filter on my kitchen sink and use a stainless water bottle, to eliminate as many carcinogens and nasties as possible.

● Experimenting with new veggies.  I never bought a beet in my life prior to today, but now I own a bunch of ‘em, along with collard greens and sweet potatoes.  Can’t wait to figure out what to do with them! (Yay for Google…..)

The result of today's hunt-and-gather foraging at Boney's.

● Eliminating most meat and cooking with lots of protein-loaded lentils and barley.  I began doing this about 3 years ago because I just FEEL better when my body isn’t trying to digest a lot of animal protein.  And while I have the utmost in admiration for my baby Amanda and her strict vegetarian diet, I just ain’t gonna give up Mexican drive-through or BBQ pulled pork.  The other stuff, though – bacon, chicken, steak, hot dogs – I’ll only have rarely and only if I go out to eat.     

● Power walking again.  Until about 2 years ago, I walked at least 3 miles nearly every night - long, fast strides that pump O2 throughout the body and work up a good aerobic sweat.  That fell by the wayside as life got too busy, but now my LIFE gets to take priority again.  It feels gooooood to be outside after work, feeling the sun and wind and pacing to Lady Gaga and Pink in the earbuds.

This is what gets me out and walking after work.

Diet-wise, I spent most of my adult life waiting for the shoe to drop:  in the back of my mind, I always knew there would be some catalyst to force me to re-tool my nutritional habits.  I skated under the radar for far too long on cake and candy and McDonald’s and coke and CRAP, until this cancer thing hit me upside the head.  I’m not a believer that diet CAUSES cancer, but once that diagnosis is on the table, you want to do everything you can to help your body help itself.  I still have a bowl of Chocolate Chip Cookie Dough ice cream every night, I still indulge my Mexican food habit, I gotta have the occasional In-and-Out burger, but junk no longer makes up the bulk what’s going into my digestive system and feeding those cells (the good ones AND the not-so-good ones).

So take THAT, lymphoma!!!