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!

May 15, 2012

Two things got me thinking tonight at dinner:  the title of the book I’m reading, and dinner itself.

The book is “Living with Lymphoma, A Patient’s Guide,” by Elizabeth M. Adler.  Dr. Adler is a neurobiologist who was diagnosed and fought her own battle with Non-Hodgkin’s Lymphoma, and wrote this awesome book as part medical text, part personal experience.  It’s an ideal blend of both, providing solid basics on cellular biology and the mechanics of lymphoma and treatment, along with her individual journey through this disease.  Her story is frightening at times, but I value her honesty in telling it.

Dinner tonight was a homemade Shrimp and Grilled Asparagus Quesadilla on Whole Wheat Tortilla, presented with sides of Roasted Salsa Verde and Guacamole, and a lovely glass of chardonnay, served in the garden at sunset. (I'm Terry and I'll be your server tonight…..) 

Evening bliss.

When I sat down in my chair to soak up the last rays of today’s sun and looked at the tray before me – plate, glass of wine, and book – I realized that THIS is what Dr. Adler meant by titling her book “Living with Lymphoma”:  cooking a great meal, savoring a nice glass of wine, reading a good book, and sitting in the midst of a backyard that has flourished under one’s own hand. 

Yes, I have been diagnosed with cancer.  But it certainly isn’t going to define who I am.  The title of the book isn’t “Surrendering to Lymphoma.”  Rather, it’s a reminder that no matter what the hindrance or impediment, life goes on.  And it’s up to us to define what shape that will take.

For me?  I’ll take the power of a good meal in a beautiful garden over stinky old cancer any day.  Suck THAT, lymphoma!

May 9, 2012

Bone marrow biopsy day.  More hijinx in Cancerland!

(FULL DISCLOSURE:  Depending on your tolerance level, some of the photos and/or text that follow may cause ooogi-ness, queasiness, hair loss, an erection lasting longer than 4 hours, or an oily discharge.  OK, so I made up that last one…..)

Didn’t sleep well at all last night – very restless and woke up a lot.  But after my favorite breakfast of blueberry waffles with sliced banana, and a great cup of coffee, I took Jake for a walk and felt rarin’ to go.  Let’s get this party started!!!!!

The BESTEST daughter!

Ready to go.  Let's get this show on the road!

My Lymphoma Goddess and Hero, Carol Ann, met Amanda and I at the oncologist’s office – with a bunch of gorgeous, yummy-scented bright yellow freesias. 

Kicking lymphoma's ass.

She didn’t know until later that I had chosen yellow as my “cancer color,” the hue that I can turn to for its energy, vitality, warmth, happiness, and power.  The sun is the essential life force of everything, and it’s what makes the desert my sanctuary.  I decided early on to channel the symbolic power of yellow – and the sun of my beloved desert – into this lymphoma journey.    

Carol Ann likewise had a bone marrow biopsy (BMB) when she was diagnosed with Hodgkin’s Lymphoma, and knew what it was going to be like – I am grateful to her that she didn’t divulge the details!  The research I had done on BMBs kept mentioning “discomfort,” “pressure,” etc.  Yeh, uh-huh….. 

Andrew, one of Dr. Glenn’s awesome nurses, started the shenanigans by taking my blood pressure. 

Mildly shocked at how high my BP was, but I guess that's to be
expected when one is about to undergo BONE PIERCING.....

No billowy hospital gown this time – I got the ever-popular paper drape.  Everything off from the waist down, and I was ready to rock.

Please, Terry, can we lighten things up a bit and not be so serious?

Skin was cleaned and disinfected with Betadine.  Dr. Glenn had such a gentle touch, it felt more like a spa treatment than surgical prep.  

I seem to get either the too-big hospital gowns, or the too-short tables.....

Next was the “bee sting” of Xylocaine to start the numbing process.  I’m glad I couldn’t see what was going on, because I heard Carol Ann say that’s one big mother fucker of a bee…..

TGFX - Thank God For Xylocaine

More, please.....

Pease, love, and numbing agents.

Dr. Glenn pulled out her bag of tricks and got started. 

SO glad I couldn't see this.....

A small nick was made in my skin and the biopsy needle was inserted.  Easy-peasy lemon-squeezy.  Didn’t feel a thing.  This’ll be a piece ‘o cake, right? 

The bone marrow aspiration was done first.  Dr. Glenn used a syringe to pull up a sample of marrow cells.  According to Caring4Cancer.com, “It is common to feel pressure as the needle is pressed into the bone, and a pulling sensation when the marrow is removed.”  Now that’s an understatement.  HOLY MOTHER OF GOD!  That’s when the expletives began to fly out of my mouth.  It’s hard to describe the “sensations.”  The tissue from the skin down to the bone is numb, but the bone itself can’t be anesthetized. How do you think it would feel to have a thick-ass SPIKE puncture your BONE?  Yeh, that’s how it felt…..

Calm on the outside, but yelling FUCK FUCK FUCK on the inside (OK, on the outside, too)

But worse than the actual puncturing was the “pulling sensation” as the marrow was drawn up into the syringe.  It felt like my entire abdominal insides were being sucked up into a vacuum cleaner.  I was trying to do rhythmic yoga breathing, trying to stay calm, but my eyes were squeezed shut and I was sweating and shaking and cussing like a drunken sailor.

Nice pillow to bury my face into (and not in a good way.....)

Dr. Glenn then performed a core biopsy, by inserting a hollow needle (a.k.a. SPIKE) and removing a small, solid piece of bone marrow.  Again, pressure and pulling and sweating and cussing.

Your eyes would be squeezed shut too,
if you had a surgical tool sticking out of your back.

Apparently I couldn't squeeze my eyes shut enough
and had to use my hand to make sure they were closed.

Dig for it, Dr. Glenn!

Did I mention how glad I am that I couldn't see what was going on?????

The greatest single word I heard today was when I asked Dr. Glenn if that was it?  Was she done?  And she said YES.

Thankfully DONE!

Tying everything up into a neat little package to send off to Pathology.

The biopsy needle was withdrawn, pressure was applied to quell bleeding, and I flipped onto my back to keep pressure on the site for a few minutes.  Turning over from my tummy to my back was no easy feat:  I was securely pasted to the paper covering the table by the considerable quantity of sweat that had poured out of my body.  Apparently for me there’s a third response to perceived danger:  fight or flight - or perspire.

Back in an upright position, it was time to don panties, shorts, and flip flops and head down the hall to make the follow-up appointment.

Panties tossed from daughter to mother = good times.

Amanda was visibly relieved that this latest thrill ride in Cancerland had concluded!

Not stressed in the least, is she?

Then it was off to Cheesecake Factory for lunch.

Finally - food and sunshine!

It’s about 4 hours post-biopsy as I write this, and my hip bone is achy and sore now that the Zylocaine has worn off, but doesn’t feel too bad.  I’m glad this step is finished and out of the way, and that I don’t have to wait three more weeks to have it done.  I’m grateful for Dr. Glenn and her skill and sense of humor, and SO thankful that Amanda and Carol Ann were there with me today.

Next step:  follow-up appointment with Dr. Glenn on May 25 to go over all the test results – PET and CT scans, lab work, and bone marrow biopsy.  That will determine what our next adventure in Cancerland will be! 

For now, though, I’m going to enjoy the rest of the day, maybe get a little bite to eat, perhaps a glass of wine, and take pleasure in a vase of beautiful freesias.

Yellow - my color for energy, vitality, warmth, happiness, and power -
and kicking lymphoma's ass!

May 7, 2012

Lab work?  Done & waiting for results.  PET and CT scans?  Likewise done and awaiting results.  Bone marrow biopsy?  Not for another three weeks yet.  UNACCEPTABLE!

Conventional wisdom maintains that you are your own best advocate when it comes to your health, and that one must take a proactive approach.  Being impatient doesn’t hurt either…..

Over the past few days, I began to get pretty anxious at the prospect of having to wait another three weeks before having the final diagnostic test that will enable the oncologist to stage my lymphoma.  Yes, it’s indolent (slow-growing), so I’m not worried about my cancer cells careening out of control over the next few weeks – but, as you may recall from an earlier post, I deal best in concretes and definites, and hate ambiguity.  Having all the tests done except one leaves everything vague – no staging, no treatment plan.  Remember, I’m the one who needs DATA and lots of it.  Having the bone marrow biopsy will be the final step for the oncologist to assemble all the facts so she can give me what I need:  INFORMATION, a direction, a plan.

Lymphoma in the bone marrow automatically ratchets the disease up to Stage IV, which significantly affects treatment.  Now, don’t confuse this with Stage IV of, say, breast cancer.  Both Hodgkin’s lymphoma and Non-Hodgkin’s lymphoma (the type I have) are very treatable even at Stage IV, whereas other forms of cancer at higher stages are much more difficult to get under control.

I just want to know what I’m up against.  How widespread is it?  What organs, if any, are affected?  Are there tumors, or is it confined to the lymph nodes?  And waiting another three weeks to have the final test just ain’t gonna cut it. 

So I got on the phone today and advocated for myself.  I told the oncologist’s nurse that I was stressing about the lag time; he listened to me and understood my concerns, and by the end of the phone call, I had the appointment rescheduled from May 30 to May 9.

So, the day after tomorrow, I get to have a long needle pierce the flesh on my hip to extract marrow and quarry a small piece of bone.  And I’m happy for it.   It’s a step closer to having all the data.  It’s forward motion and being proactive.  And it’s a satisfying bit of self-advocacy.

Bring on the biopsy!

May 4, 2012

Radiology Day – woo hoo!  Began the morning by getting up at 5:AM (on a day off yet…..) so I could get some breakfast in me prior to the 6-hour fast before the scans.  But it was OK because I could crawl back into bed with a satisfied tummy and catch a few more zzzzzzzzz’s – now THAT’S how a morning should be!

Checked in and filled out paperwork, then was escorted to the changing room.  Sean, my stylist for the day (alright, so he was my Radiological Tech too) had a lovely and ever-fashionable big-ass gown waiting for me.  After transforming into a proper patient – readily identifiable by being sheathed in a humongous, billowing garment - he got the IV started.
 

Big-ass gown?  Check.  IV installed?  Check.

My view after IV installation.  This month's Sunset magazine features camping!

After posing for paparazzi, Sean positioned me on the CT table and we were off.

Am I the only one who thinks CT scanners look way too phallic?

  

CT scans of both neck and chest meant two pushes of contrast dye, the stuff that causes a whole body flush and makes one feel like she peed her pants.  No matter how many CT scans I get, I’ll never get used to that sensation, even though the tech lets me know when it’s coming.  I first feel it in my mouth and throat – a heavy metallic taste – then my ears feel hot and flushed from the inside out.  Next the flushing spreads to my chest, and finally the pee feeling.  It’s amazing how quickly the circulatory system picks this stuff up and commences to rush it throughout my body:  it takes probably less than 10 seconds from the first push by the tech to the pee sensation.

Done with the CT scans and dressed, I was escorted across the parking lot by Fabiana (LOVE that name – molto Italiano) for the PET scan.

Vuong, the PET tech, poked my finger to read my blood sugar: 79 (normal is 80 to 120 – yeh, no kidding it was low - no food for 8 hours).  He then reached into a metal box labeled “CAUTION – RADIOACTIVE MATERIALS” and extracted a thick metal vial that he hooked up to my IV port and pushed – yum, radioactive sugar!!!  The F-18 Fluorodeoxyglucose (FDG) binds to cancer cells so they will be highlighted on the scan. 

Should I be scared.....?

I then sat back for 35 minutes so the glowing glucose could make its way through my body.  Meanwhile, Vuong asked me what date it was.  May the 4^th, I replied.  To which he responded, “May the 4^th be with you.”  He REALLY needs to keep his day job…..

My view while waiting for the glowing glucose to wend its way through my body.

There were two of these bags at my feet in the small room I was waiting in.
Shouldn't these be a little more secure?  Couldn't someone
just walk off with them and sell them on E-Bay to some nuke-crazy country?!!?

The actual PET scan took longer than the CT scans, probably close to 30 minutes.  But as soon as the door was closed and the scanner started doing its thing, I zonked out.  No night-night drugs, no sedatives – it was just very peaceful and relaxing in there and very conducive to sleep.  I never even heard Fabiana come back in and didn’t know she was there until she began taking the blankie off.

Done!  (Am I glowing???)

As I left, Fabiana handed me the sheet of post-PET scan instructions, which included the following:

“You will retain some of the radioactive material from your injection for 24 hours.  This can cause you to set off alarms at certain areas where radiation monitoring is in progress; i.e. airports, garbage dumps, border patrol checkpoints, etc.”   Well that’s just great.  Now I can’t take that load of junk to the dump on my way to the Tijuana Airport…..

I guess I’m in a holding pattern until I hear from the oncologist.  But, today’s scans were an important step forward:  Dr. Glenn will be able to stage the lymphoma, which will determine if or when I’ll start treatment.  However, I won’t be holding my breath for her call – it’s Friday, it’s the weekend, and I’m SO sleeping in tomorrow – after battling this wicked cold for the past week, that’s all I care about right now!