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

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!”