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

April 27, 2012

First appointment with Dr. Glenn, Hematological Oncologist.  Diagnosis: Non-Hodgkin’s Lymphoma, B-Cell, Indolent.  They key word is indolent:  low grade, slow-growing.  THANK BUDDHA!

I'm INDOLENT, not aggressive!

Next steps:

• Lab work
• PET scan (to be scheduled)
• CT scan (to be scheduled)
• Chest x-ray (to be scheduled)
• Bone marrow biopsy (May 30, 2012) 

All of the above will enable Dr. Glenn to stage the lymphoma (I, II, III, or IV), which will then determine a treatment strategy.  Depending on where all this shit is in my body, treatment can vary from “watch and wait” to chemo, radiation, immunotherapy, and/or surgery.  If it’s confined to the lymphatic system and not spread to blood, marrow, or organs and I’m not experiencing any side effects from the cancer (which I’m currently not), “watch and wait” is the approach.  Once it evolves into a treatable stage, other treatment options are pursued. 

So…..right now I’m waiting.  Waiting, but certainly NOT putting my life on hold.  There’s still my job to go to, lawns to be mowed, dog poop to pick up, hiking boots to lace up and a desert to explore.  Life goes on, you know?  I’ll go through this like I’ve always done, one step at a time, and get to the other side.

Of course, no self-respecting Lympho Pixie would venture out to her first Oncology appointment without the company of her entourage:

Amanda and Lauren, with matching photos of Jake on their phones.
They are SO in love with our dog!!!

April 22-26, 2012

In San Francisco for training for work, and anxiously waiting for a call from my primary physician with the referral to the oncologist.  Finally they call with the appointment date:  Friday, April 27. 

I indulge in a little talisman gathering in Chinatown and return home with three additions to my lymphoma arsenal:


Medicine Buddha, who sits on a glass butterfly plate by my bedside.

Wood bead tassel with Chinese symbols for good health.

Yellow kimono, embellished with a dragon for strength and a phoenix for rising out of the ashes.
And yellow because of its positivity, nourishment, and celebration of life.
(Sorry for the crappy photo.....)

  

April 20, 2012

My “official” initiation into the Cancer Club of Lymphoma Warriors – celebrated by going out with Carol Ann, Amanda, and Lauren.  Carol Ann put together a huge gift bag full of wonderfully meaningful self-pampering goodies and a beautiful letter (and thank you Ryan for picking out such a magnificent bag!).

Goodies!

April 17, 2012

“Terry, you’re going to be busy the next few weeks.  Are you sitting down?”  The call from my primary physician with the result of the biopsy wasn’t a surprise – I fully suspected he’d have not-so-great news.  “You have lymphoma.”

Now it was definite, real, concrete.  But, that’s how I deal best with things.  I hate ambiguity and vagueness.  I need certainty, sureness.  So this news was, for me, a relief in a way.  No more “What if it’s lymphoma?”  “What if it’s something else?”  Now I had a direction to go in.  And, in the words of a wise spiritual leader, “Always moving forward.  Always one foot in front of the other.”

Lymphoma.  At this point, I didn’t know what type (Hodgkin’s or Non-Hodgkin’s) or sub-type.  But one thing I knew for sure is that lymphoma is not a death sentence.  Being an info junkie, I had been researching my brains out since the first mention of the word “lymphoma” in the ER on March 10.  Most important, however, has been the presence in my life of an amazing angel and lymphoma warrior, my LaLa, Carol Ann.  She underwent her own battle with Hodgkin’s lymphoma and royally kicked its ass, and is now eight years cancer-free.  Her strength, exceptional positivity, and unfailing huge heart throughout her diagnosis, treatment, and beyond are, for me, the ultimate in showing how to fight this disease and win.  Yes, she was sick during chemo, yes she lost her hair for a time - but that was then.  Now she’s competing in freaking TRIATHLONS and traveling the globe!

I certainly couldn't have known it then, but watching Carol Ann’s journey through lymphoma was laying the foundation for how I would react to my own diagnosis.  Because of her, my first thought was “Lymphoma?  No biggie.  Bring it!”

April 13, 2012 (yes, it was Friday the 13th)

CT-guided needle biopsy of abdominal lymph nodes at Sharp Memorial, in spite of blunders by my primary physician’s office staff:  referral not received by Sharp Memorial because primary physician’s system and that of Sharp Memorial can’t “talk” to each other; biopsy coded in as being for breast (no, no, no, wrong body part); scheduling conflicts; etc. etc. etc.

Check-in was at 6:AM for the 8:AM procedure, followed by prepping with lots of blood draws and installation of the IV.


Again with the ginormous hospital gowns?

All hooked up and ready to go.

The biopsy was painless and, dare I say, downright enjoyable with the combination of Fentanyl and Versed which put me into twilight sleep (no, not the vampire kind), along with a kick-ass local anesthetic that was injected into the needle site.  I was on my tummy, as they had to go into my abdomen through my back.  I remember chatting with the nurses about our dogs, then going night-night for a while, then waking up in the middle of the procedure and chatting some more.  I could hear the instruments that were snipping/sucking/extracting the tissue samples, and felt a little pressure whenever extraction was done, and I could see the doctor passing the samples to the nurse who bottled ‘em up, but there was absolutely zero pain.  Then apparently I was injected with some kind of wake-up drug, because before they even got me off the CT table and onto the gurney for the ride back to recovery, I was totally with it.  I asked to stop at the potty outside the CT room to pee, and realized then why there had been no pain:  the local anesthetic was apparently some kind of partial epidural, and my legs were quite wobbly and only somewhat functioning.

Once back at recovery, they brought me a sandwich and juice (thank Buddha, because it had been like 15 hours since I had eaten), and I napped a little during the “observation” period. 

Post-biopsy.  Done and done.

Six and a half hours after checking in, I was done and one my way home.  Piece ‘o cake.