Chemo Reality

Big reality check.  I went for my lupus chemo treatment yesterday.  I take them every four to six months, and each treatment set consists of two treatments, two weeks apart.  This was the first tiime I’d been with a group that was expressing the difficulties of their situation.  Previously, I’ve been surrounded by people who were either cheery or not talking.  Yesterday, I heard sadness, bitterness, anger, frustration, resignation…a pastor who was there for treatment was writing a sermon, which he titled based on some of the sad things people were expressing.  He talked briefly about hope and prayer, sitting there with his own IV, probably not ten years older than me.  One patient who passed through told another that he wasn’t returning to work, that his doctor had given him six months.  Someone said “When someone finds out I have cancer, the first thing they ask is ‘When are you going to die?’.”  A nurse passed through, commenting on the vigorous conversation in our group, and a neighbor said “Yes, look how we’re all smiling as these chemicals kill every cell in our bodies.” 


Now I’m not saying that everything was gloomy.  It was just a realistic, vocal bunch of people who are pissed off at what disease is doing to them.  After 16 years of lupus, you know I sympathize!  We still commented on each other’s activities (one with a computer, another selecting Christmas gifts from an NFL catalog, two of us with knitting, the pastor consulting his handbook and scribbling notes) and shared our water, candy, knits, and even a few phone numbers.  My nurse was older and experienced, the best ever, popping my IV into my requested vein and checking on me regularly, with interesting conversation.  The coffee was freshly made.


Inside I had some tears for the fresh pain some were exhibiting.  I had some more tears when I found that my medication grant (my treatment isn’t covered by Medicare) wasn’t going to cover these December treatments.  That $2,000 translates directly into more college loans for my daughter next semester.  I am more than fortunate to have some resources to draw from in these crazy economitis days.  I try not to let the economitis eclipse my decisions about treatment. 


This morning I called my parents early.  They told me they were still getting dressed, but they stopped to talk.  We had some big laughs over some of my mom’s boudoir lessons in my childhood.  They were happy and cheerful and expressed great anticipation for their day, relishing the pancakes for breakfast, morning newspaper, soap opera time together…at 89 and 90, they enjoy everything.  What a boost for me!


I’ve got LOTS to do today.  I can’t let chemo fatigue oveertake me.  I’m delivering two donated knitted pieces for a church silent auction.  The proceeds will go to a recreation/education center in a depressed neighborhood.  Then I’ll make a huge post office run, sending back some mail order items that won’t work, and posting a couple of packages to customers.  Yikes!  I had forgotten.  I got another order last night.  I have to find the product and pack it.  What am I doing playing on my computer?!



Kicking B-cell Butt!

I did it!  I did it!  I did it!  The big, goofy smile is still on my face!  I spent six hours in a cancer treatment infusion center today-because oncologists are the guys who are set up to give this medicine, even though the recipients are partially rheumatology patients like me.  It was a nice facility, connected to a hospital, well-equipped and comfortably furnished.  I had my own super-padded recliner and table and infusion pump on a handy rolling pole (the good kind that doesn’t tip over when you try to walk and push it around).  There was ample seating for patients and their significant others, a snack area, convenient bathrooms, and friendly nurses. 

The only thing lacking was a sense of patient impowerment.  The attitude that I got over the phone, that things were casually moved along without forewarning for patients, persisted through the day.  There didn’t seem to be a definite time for anything, and no one made an attempt to orient or enlighten me.  After being signed in and going through the usual new patient routine (giving up my insurance cards, handing over a sheaf of medical information, getting weighed and measured) they led me to the treatment area and abandoned me.  I tried out several recliners, settled on one and took out my knitting.  I worked on it for a while, then worked on it some more.  I was close enough to the glassed-in nursing area to hear them say they were waiting on a response from my insurance company to get started.  I waited some more.  After an hour of too much thinking, I started to blubber.  I found another recliner in a more secluded corner and looked out the window and wiped tears.  Eventually the nurse approached with another patient, an elderly woman and her daughter.  I sniffed up the tears and put my tissues away.  Pretty soon a nurse came and drew blood and started my IV. 

Alright!  The show was on the road…NOT!  This was just the premedication with Benadryl.  Slow, slow, slow IV drip…getting sleepier and stupider by the minute…until time to see the doctor.  Walk back to the exam room feeling like i’m walking in Karo Syrup.  I was stiff when I came, now I’m stiff and mushy.  We talk a few minutes, catching up, ”Essie, I knew it was you, Essie, and you cannot work any more?” and plan out some testing and further treatments.  I’m to take this again in two weeks, then repeat in six months.  Discussion of demyelinating disease (kind of like multiple sclerosis) occuring in a few treated lupus patients.  Mushy brain zhoooms past that.  Back to my recliner.

Most of the recliners have filled up in the partitioned room.  Chemotherapy seems to be a popular thing to do on the day after Christmas.  The people are all being nice.  Perhaps they are in the bargaining phase:  “Cure my cancer, God, I’ll be good!”  Some talk a lot, some brought things to do like books and puzzles.  Only one little partitioned group watches TV.  In the background I hear their CNN Headlines, reviewing the tiger maulings in San Francisco and the little found girl from the airplane crash in Panama again and again.   There is lots of cancer talk.  My pod mates and I prefer to discuss construction and home building and the lukewarm coffee, although once we are a bit acquainted, the man closest to me admits that he has cancer in the lining of his lung and his bones.  He is afraid after having reactions to the first two chemotherapy meds they tried.  He doesn’t know the names of them, or what he is getting now.  He hears that the Canadians have a cure for this.  I enjoy our conversation.  To think that I considered moving when he came because he smelled so strongly of cigarette smoke, bless his heart.

Finally my medication is started at a slow drip.  They set a timer and increase the speed of the drip every 30 minutes.  Intermittently playing with my mohair, I watch the drip chamber as if with a stern glance I could will it to drip faster.  I take frequent mental inventories of my body to see if I am dying.  More inventories to see if I can detect the B cells throwing down their auto-antibodies and heading for the hills.  For a while nothing happens.  Two trips to the bathroom, a pack of peanutbutter crackers, a cup of coffee and 4 inches of mohair later, my lips and scalp start to itch.  I request more Benadryl, no problem, two lovely pink capsules.  The itching goes away. 

At the end, my medication infused, the nurse removed my IV and said “Good-bye.”  I went out to the billing person and turned over a credit card to pay the sizeable 20% that my insurance doesn’t cover.  No Wii for me.  No Wii for Essie.  Now that’s when I should have cried!  And no surprise:  I had to go back and ask for the appointment for two weeks from now, because evidently that hasn’t been communicated to the nurses or they haven’t passed it on to me.  Oh well.  I’ll know what to expect next time.  The B-cell battle is the important thing.

I did it!