Treatment. It Begins…

I haven’t written in a long time.  I was hoping it would be even longer.  (Never would have been fine.)  However…..my cancer has progressed and treatment is about to commence (a fancy way of saying “0h crap! This can can not be good.”) So, time for an update.

Some quick background might be helpful.  I went to see my oncologist in mid-May. As she was doing her exam, we had this brief (and telling) conversation:

Doctor: Are you still planning to take students to England this year?

Me:  Why yes…in just over two weeks.

Doctor: What date exactly?

I didn’t feel like this conversation was heading in a positive direction.  It wasn’t. Turns out that my blood work up looked like an Etch a Sketch piece of artwork – the cell counts that were supposed to be going down were in fact doing the opposite – as were the ones that were supposed to be going up.  (I never really liked playing with an Etch a Sketch.)  My doctor didn’t appreciate the way this art piece was looking either and even less fond of my departure plans. We “compromised.” If I could demonstrate stability in a week – she would give me permission to go on the trip.  Enter wheatgrass juice. (Yup…just what it sounds like.)  A brief Google search suggested that it improves platelet counts.  I began drinking it morning, noon and night. I have no idea if drinking grass really made a difference, but a week later my platelets were up and my bags were being packed. (It was a great trip by the way.)

I returned and the real action began. My counts were worse and it was time for some more tests – I’ll spare you the details – but let me just say that I think it’s time that doctor’s begin offering frequent flyer points as an incentive to show up.  Next came the decision of which treatment to use to put this cancer into remission (since there is no cure at this point).  Behind door #1 was aggressive chemo and immunotherapy.  Behind door #2 was what is best described as chemo in a pill – one that specifically targets the cancer cells in my blood.  I picked door #2. So….starting Friday, I begin taking three pills at the same time each day. (Did I mention that you have to wear gloves when you touch these pills?? Seriously?!)  I’ll take them as long as they work. The current research shows most folks getting about five years of remission while on these meds.  When they stop working…chemo is still an option…but we’ll be hoping for other treatments…or even better, a cure.

Sometimes people ask about my use of humor regarding my experiences with cancer.  Here’s what I think: Cancer can steal a lot from you – peace of mind, a sense of healthiness, etc. But at some level I have to maintain some control.  Humor has always been my best defense and I have no intention of allowing cancer to control it.  Don’t be fooled though.  I hate cancer. Having it sucks. It scares me.  It makes me beyond sad and angry at times. But I have to take control where and when I can. So sometimes I laugh. (I was never good at whistling in the dark anyway.)

Does this medication have side effects?  Yes.  Do I know which ones I’ll experience.  Nope. What do I need?  Your acts of friendship for both me and my family.  Cancer impacts the whole family.  Your hugs, prayers, kind thoughts, good energy and willingness to pause for a moment on occasion and commit to  “random acts of kindness” will always be welcomed by anyone who is living with a chronic illness or grieving a loss.  My thanks in advance.

Going Mental….

My British friends have a lot of great phrases and “going mental” is one of them.  It’s what I want to say sometimes when people ask me how I’m doing. “Hey great…just going a bit mental.”  Frankly, it’s just a lot easier than saying that I’m feeling so anxious that I just want to throw up.  (A better response too when you’re asked how you are doing when you are all having dinner! That “throwing up” part can really put people off….I know, trust me.) And frankly…having cancer really can make you go mental.  Fortunately, I don’t feel like this all the time.  Often I really do just feel pretty great.  But there is another way that I personally think of this phrase.  Sometimes I get really introspective (mental) and my thoughts can drift for awhile. (Call me at 4:00 a.m. some night and you’ll often find me going mental in this way.) I guess this is the nature of things when you have to let go of the control you once believed you had over your body and you realize that tomorrow really is a new day and you’ll just have to see where it takes you. (I’m banking on a retirement home someday in the very distant future….one where everyone wears khaki pants and Ralph Loren shirts. Just can’t do that spandex look!)

Physically, I am doing well most of the time.  We met with my oncologist a few weeks ago. She had the results from my latest round of blood tests. Using part of the 5 or so gallons of blood they drained from me again….they did a chromosome study.  I won’t pretend to completely understand the results…but she said that they were encouraging.  The cancer is attached to one of the better chromosomes. (That was such a weird sentence to write! I have never in my life thought that one chromosome might be better than another! ) I’ll take it though. Even better, although my white cells are still elevated, I don’t need to start any treatments at this point – or the foreseeable future. (So my receding hairline is just age related. Damn.)  I will see her again in October when we start the tests again……

When I am not feeling as great, it is usually one of two things.  My bones are aching or I’m nauseous.  The latter is the biggest pain.  It turns out that I have a lot of enlarged lymph nodes in the trunk of my body.  Add to that the “fatty liver” fun….and you get nausea.  (I like to think of this as the lymph nodes in the area of my stomach and that “fatty liver” getting together and having an on-going buffet….kind of like the Romans used to have.  They don’t seem to know when to stop and I pay for their gluttony.)  Add to that a dose of anxiety and it’s a recipe for $#%&! (Hey, I work at a Christian college….have to think about the words I put into print.)    Tonight in fact I am meeting with a dietician who has some very specialized knowledge of the diet and CLL.  I suspect that by morning I’ll be restricted to eating alfalfa sprouts and tofu.  Good times. Stay tuned.

So that’s the latest update.  I do want to add my thanks to so many of you for your acts of kindness.  They are greatly appreciated.