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!

May 3, 2012

Home again with this shitty-ass cold. 

Using incredible powers of hindsight (!), I remember that I was down with a horrible cold just three months ago – hideous coughing, utter exhaustion, lost my voice, had to get a prescription for cough syrup with codeine in order to sleep, etc.  Now, getting sick twice in a few months is probably no biggie for most people – happens to them all the time.  But it doesn’t for me.  I RARELY catch what’s going around.  I’ve always joked that it’s because of my superhuman immune system:  when I was a child, I was on a regimen of frequent and regular gamma globulin injections because I was ALWAYS sick, due to some sort of immune system problem (I never paid attention to what my mom and the pediatrician were talking about, so I have no idea what it was).  I’ve always assumed that the reason I never get sick NOW is because of the gamma globulin shots THEN.

On the flip side, I’m also wondering about the occurrence in general of these last couple of colds.

According to the National Marrow Donor Program, “NHL is a cancer of the lymphocytes. Lymphocytes make antibodies, proteins that attach to foreign cells and mark them to be attacked. Lymphocytes also direct the rest of the immune system to attack the foreign cells and help in the attack.”  Following that line of logic, if the lymphocytes are compromised because of NHL, then they can’t really do their job of telling the immune system to attack the foreign invader (i.e., this crappy cold).  Perhaps that’s why this cold and the one in January are so intense and prolonged: NHL is affecting the ability of my lymphocytes to produce antibodies, and my immune system just ain’t gettin’ the message to fight off the cold.

I guess this cancer thing pretty much shoots the crap out of my lifelong theory of having a superhuman immune system!

  

May 1, 2012

I guess being a life-long Parkie (a.k.a National Park Service employee) has influenced me in more ways than one.  Naturally, I crave the wilderness, hiking, camping, and exploring.  But when faced with what is anticipated to be a prolonged situation, I automatically go into Incident Command mode (“IC” for short).  First thoughts are to marshal all available resources, organize, strategize, develop protocols, then execute tactics.  God, I’m a nerd…..

Going hand-in-hand with being in IC mode is my proclivity for being an Info Junkie.  Always gotta have more data.  Always gotta know more.  Always something new to learn.  Did you think cancer would be any different?  J

The internet is great for when I need a quick fix of info.  But I still like hard copies of stuff – paper things that I can mark up, highlight, organize, and digest. I always have a dossier full of whatever I’m currently entrenched in or researching.


The dossier.....

Yes, the dossier cover says what you think it says.  My new motto.
I LOVE FunnyCancerShirts.com!

As for information sources, the Leukemia and Lymphoma Society and the Lymphoma Research Foundation are wellsprings of knowledge.  I went on their websites and ordered a ton of materials that I’m still sorting through. 

Latest batch of crack for this Info Junkie.....

I know some people take the “ignorance is bliss” approach to dealing with cancer, and for them, that works.  For me?  That would drive me INSANE!  I gotta know, so I can put into play those strategies, protocols, and tactics that my IC head has formulated.

So for now, I’m in fact gathering mode – gimmie all your brochures, booklets, and fact sheets, because I got a data brain that needs filling!  

April 30, 2012

Home sick today from work.  No, no, no, it’s not what you think!  It’s just a nasty cold.  Ugh.

But, being home today allowed me to get two important things done:

• Scans have been scheduled for this coming Friday, May 4.  Will have CT scans of my neck and chest, as well as the PET scan.  It’ll be a busy afternoon – thankfully, they were able to schedule everything back-to-back at the same location. 
• Blood draw.  I popped over to the lab at Sharp Grossmont and gave up at least five vials (I lost track after that, as the phlebotomist and I were talking about cockatiels).  I called the Oncologist’s office earlier to see if it would be OK to do the blood draw with a cold; since I didn’t have a fever, I was good to go.

Always moving forward…..  J