So-what IS your prognosis?

People ask this a lot-and there is no good answer.  Statistics are fine, but nobody knows where an individual sits in the spectrum.  The more salient question may be: do you really want to know?  If the prognosis is poor, will it help you to fight?  If it is good-are you reassured, or will you be less accepting of an unexpected bump in the road?  Another frequently asked question: 'Don't you need to know about <some cancer treatment issue>?' Increasingly my sense is no: you pick a doc you trust and can relate to, and then do your best to follow their treatment.  'Knowing' more about the disease is probably not a big part of dealing with it, and frankly overall may prove to be a detriment in the overall battle.

Batting 1000

Wow-the blog is launched and no letter bombs or nasty email.  Ted Kaczynski, eat your heart out.  Seriously though, thanks to all of you who have called, emailed, commented, stopped me in the hallway, or just avoided using a one finger salute.  Prior to starting this I had significant blogophobia,  but your kindness and support has frankly been overwhelming. Thank you all.

Now for the Real Chemo

CT Scan #2 doesn't show enough improvement to stay on Rituxan.  The next step is R-CHOP, an acronym for a standard lymphoma full bore chemo with the hair loss and other associated fun.  Given one day every 3 weeks for 6 sessions-pretty much takes care of summer.  Pre-treatment heart function tests are done since the chemo can cause heart damage. Had a port inserted to spare arm veins.  First treatment is fine but after 5 days of high dose cortisone and abrupt cessation, you hit the wall.  Nausea and every bone, joint, and muscle feels like you went 10 rounds with Rocky.  Looking forward to second treatment-let's just get this done!

So now what???

Despite all the sophisticated medical testing, it is very difficult to know just how 'bad' this type of lymphoma is and how aggressive treatment would need to be. Dr. Kaplan suggested trying a milder Rituxan therapy first, rather than the more conventional and aggressive chemotherapy. Rituxan is a monoclonal antibody that is easily tolerated, and google it if you are interested in more detail. The therapy was given once a week and continued  for 4 weeks total, and we get to the end of April. External lymph nodes (the glands in your neck, underarm, groin, etc.) reduced in size significantly and things seemed to be progressing well.

The answer

Turns out I have (and you can start paying attention about now) a variant of so-called non-hodgkin's lymphoma called mantle cell lymphoma.  Unless you are a hematopathologist, this is not terribly understandable.  Frankly I would just as soon not understand it, but I couldn't find that choice among the multiple choice answers .  Check out National Cancer Institute if you have the inclination.  You don't want to do this reading as homework either, trust me.

Biopsy time

I see a head and neck cancer surgeon (a doctor whose acquaintance I don't recommend for just casual visits) and we get set up to remove a couple of lymph nodes from the back of my neck.  Surgery happens and you go home and fret.  I am already aware of significant anemia, an elevated malignant white blood cell count, and low platelets, all due to bone marrow invasion by tumor.  Being a retired physician causes you to become decidedly psychotic, since you know just a little too much about what is happening behind the curtain. So you wait.

The Oncologist

Trust me when I tell you that no matter how wonderful your Oncologist, you'd really rather never acquire the need to meet him or her.  Dr Kaplan is a deity at the Swedish Cancer Institute-they don't say OMG, it's OMDrKaplan.  Anyway he sees me the day (you read that correctly) of the CT Scan.  He looks me over and thinks I don't look sick enough to have a horrible lymphoma. Great I think-maybe this won't all be bad.

THE Ultrasound

So I go to see a Gastroenterologist in late Feb and he thinks maybe I have gallbladder disease.  My mother had hers out at age 29.  An Ultrasound exam ends with a Radiologist telling me I have lymphoma and need a CT scan right away.  I wish he hadn't sugar coated it and told me the real deal-yikes. Enlarged spleen and lymph nodes were compressing my stomach and causing the trouble eating.  Talk about a turning point-how to have your life change in the space of one sentence.  Get to drink that wonderful oral CT contrast stuff, have IV contrast, and  then they do a CT of chest/abdomen/pelvis.  Don't ask how much radiation that is-you probably don't need a night light for a week.

How it started

Everyone wants to know how it started.  Well it didn't really start, it just sort of crept up.  I probably wasn't well in the fall/winter of 2010, but by the New Year things were definitely not right.  With the knowledge of the retrospectoscope, maybe there were some night sweats and perhaps a little weight loss.  Developed trouble eating a meal with stomach pains, cramping, and even vomiting.  Thought it might be ulcer trouble, but a standard ulcer regimen didn't help, so I decided to see a real doctor-they're the ones who see you in their office and take care of you properly.  Doc friends will know what I mean.