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!!!

June 1, 2012

You didn't think I could just sit around and do nothing for the next three months, did you?  So it was off to see my favorite acupuncturist Susan yesterday for a little of her nutritional wisdom and voodoo magic.  

Integrative medicine is the holistic approach that carefully melds the typical Western cancer protocols of chemo and radiation with often non-western therapies, such as herbs, botanicals, and vitamins; yoga; homeopathics; acupuncture; guided imagery; etc.  “Carefully” is the operative word, because some vitamins and supplements can compete with some chemo drugs for the same metabolic pathways, making both ineffective at best and downright vicious at worst.  But, since I’m not doing any chemo right now, there’s a whole world of integrative medicine open to me.  

I saw Susan regularly a few years ago for treatment of migraines, back and hip pain, and awful peri-menopausal crap.  Her combination of acupuncture, Chinese medicine, and nutrition helped tremendously and got me over some pretty wicked symptoms.  It was good to connect with her again, and to learn that she and I were on the same page with our goals:  to get my immune system as healthy as possible to enable my body to fight when it’s time, to try and arrest the development of some of this cancer thing, and to get my Qi flowing the way it should be.

Little red-tipped needles - MUCH better
than a bone marrow biopsy!!!

Life is always better under a warm blankie.....

Susan, a.k.a. "Doc"

Peace, yo.

The Dragon Room, obviously.....

Susan's potion corner.

A big part of Susan’s approach is nutrition, and she gave me a laundry list of things to start incorporating into my diet, including organic green leafies (kale, chard, etc., which are high in chlorophyll, a powerful blood builder – just the thing to kick ass on a blood cancer!); Brazil nuts (selenium-rich, they can slow cancer cell propagation and help kill off cancer cells that just ain’t dyin’ on their own); and whey protein instead of the soy protein I’ve been using in my smoothies (according to Livestrong.com, because of the estrogen-like compounds in soy, “…..menopausal women could be at risk for developing cancer with long-term intake of soy.”  Why take the chance of inviting MORE cancer?)  

So today, after a long romp with Jake at the dog park, we made a trip to Boney’s/Henry’s/Sprouts and stocked up on healthies.

Just what the hell am I supposed to do with THIS thing?????

Seriously, am I really supposed to eat something that's
bigger than my head???

Uh-oh.  I'm turning into one of THOSE people.....

Now, those of you who know me know that I’m a recovering junk food junkie – until a few years ago, fast food was dinner most nights of the week.  I slowly started making better choices at the grocery store, and then began cooking and freezing batches of yumminess that are easier to pull outta the freezer and heat up than a trip through the drive-through.  Make no mistake:  I’m still a Mexican food addict and would eat deep-fried chimichangas every night if I could.  But since this cancer thing came along, I’m way more conscious of what I put in my body – if it’s gonna go in, it’s gonna do some good.  

Wow – and it only took me 50+ years to figure that out…..!

Tonight's dinner: Barley-Lentil Pilaf with Mushrooms and Asparagus, served
with a Sauteed Kale and Chard Melange Dressed in Fresh Garlic and Teriyaki Sauce.

Just tonight on the news, there was a report of new cancer drugs that yield better results with fewer side effects.  Research is constantly producing improved, state-of-the-art cancer treatments and therapies.  Combine that with the “watch-and-wait” approach and integrative medicine, and I think this non-chemo interlude will be time well spent.

May 25, 2012

Appointment today with Dr. Glenn to get the final results of the PET and CT scans, blood work, and bone marrow biopsy, and to do the staging.  

And the votes are in:  Lymphoma in my pelvic, retroperitoneal (abdominal), and supraclavicular (neck) lymph nodes.  And in my bone marrow.  Stage 4.  Remember, though, that this is indolent – very lazy and sluggish to develop.  

I usually dislike the words "lazy" and "sluggish,"
but in this case, I'll take 'em!

So where do we go from here?  Since this type of cancer is very s-l-o-w growing, the typical standard of care for Stage 4 Asymptomatic Follicular Non-Hodgkin’s Lymphoma (NHL) is watch-and-wait until symptoms begin to show, thus deferring chemo and its side effects for as long as possible.  

Since I’m not exhibiting any symptoms and am feeling scary well (except for intermittent bouts of extreme fatigue), I’m kind of “on hold” for right now.  

As you may recall from earlier posts, however, that’s NOT how I operate.  This is NOT my normal “rock-out-with-your-cock-out” approach (thanks, Jo, for that!).  I don’t like uncertainty.  I don’t like NOT having a plan.  So knowing that I have this cancer thing residing in my lymph nodes and coursing throughout my bone marrow and doing nothing about it is gonna drive me (even more) insane.  

My logical brain completely gets the theory behind “watch-and-wait.”  If a patient is feeling well, you don’t want to infuse them with a shit-load of toxins that will make them very UN-well while the chemo is doing its job of eradicating the cancer cells.  It's that whole quality-of-life thing.  Also, there is a risk with some chemo drugs that your body may build up resistance to them, making them less effective or altogether ineffective later.  You don’t want to blow your wad early on and not have those big guns available later when they’re needed more.  And there will always be “later” with follicular Non-Hodgkin’s Lymphoma, because it will never completely go away - I will experience periods of disease and treatment, followed by periods of remission, followed again by the disease/treatment cycle, followed by remission, etc. etc. etc.  Some fun to look forward to, eh?  

I’ve done a butt-load of research on different approaches and treatments, and clinical studies involving Rituximab (Rituxan) look very interesting.  Rituximab is an FDA-approved monoclonal antibody, a manmade version of the proteins made by the body’s immune system, which has been studied as an initial treatment followed by maintenance therapy for asymptomatic follicular NHL.  It’s already being used as part of a multi-drug chemo regimen in symptomatic patients.  

According to Highlights from the 2010 Annual Meeting of the American Society of Hematology, studies comparing Rituximab vs. watch-and-wait reported that “Among those who received Rituximab, between 80 and 90 percent did not need additional treatment.”  Of those study participants who were on watch-and-wait, only about 50 percent did not need more treatment.  The report further states, “In addition, the cancer had not continued to grow in about 80 percent of patients who received Rituximab, compared with about 35 percent of those who received watchful waiting.”  

The choice seems pretty obvious, doesn’t it?  Start on Rituximab prior to becoming symptomatic.  But, despite being fairly well tolerated in most patients, Rituximab still carries its disadvantages, side effects, and risks - including liver, kidney, and heart failure.  Yikes!  

My next appointment with Dr. Glenn is in August.  I suppose I need to (a) be grateful that, for now, we can go this long between appointments, and (b) look at this three month period as not “doing nothing,” but rather extra time to continue researching and coming to a decision about what I want to do.  

In the meantime, we had another lovely post-appointment meal at Cheesecake Factory.

This is becoming a habit.....

Dinner was followed by a little diversionary side trip through Bloomingdale’s, where I spied a GORGEOUS Coach purse that is strong competition with the Prada bag I saw in San Francisco in April…..

All this fabulousness, AND it's in my cancer color, too!

As my Lymphoma Goddess Carol Ann said to me, "I may get hit by a bus tomorrow, so I might as well look cute today.”  

Right on!  Spoken like a true Cancer Warrior!   

Fuck all this cancer shit.  I think I made my decision:  I need a new purse!

May 20, 2012

I went camping this weekend for the first time since the diagnosis a month ago.  And you know what?  A finding of Non-Hodgkin’s Lymphoma doesn’t change a thing.

The wildflowers are still blooming.

The ancient live oaks are still standing.

The birds are still singing.

The granite boulders are still solidly in place.

The trail beneath my boots is still calming.

The solitude is still there for a girl and her dog to lose themselves in.

The world still spins, and life goes on.  And life - for me - has always meant living outside, being in the backcountry, treading lightly as a part of the natural world, not apart from it.

Why would I allow cancer to change that?

L'chayim - to life!