The Count

17 and 1/2 pills.  I hadn’t counted in a while, and I was a little surprised.  It is truly distilled to a minimum: 

1.  Prednisone takes five tablets right now, a 5 mg and four 1 mg, to make up my 9 mg dosage.  I am on a very slow, gradual taper.  In two more weeks I can decrease by 1 mg.

2.  Three vitamins, B12 for my mostly meatless intake, folic acid for the two medicines that deplete it from my system, and D to replace the action of the sun that I must avoid.

3.  One nonsteroidal anti-inflammatory, for my osteoarthritis.  Helps with pain, too.

4.  A low-dose diuretic for the swelling, and potassium to replace what it depletes.

5.  A beta blocker for the chronic tachycardia that I’ve had since my diagnosis.

6.  Two antidepressants, one of which helps tremendously with the lupus and fibromyalgia pain.

7.  Over-the-counter antihistamine.  I am allergic year-round, crazy when you consider I’m on prednisone daily.

8.  One pain pill, still on minimum dosage with as-needed use.

9.  Low-dose aspirin to prevent the crazy blood-clotting that I experienced a few years ago. 

Periodically I need to lay it out, pill by pill, and convince myself that every bit of this regimen is necessary.  The alternative is to start dropping off pills and wait for the consequences, something my training and experience discourages.  I understand the aversion most people have to taking so much medicine.  This is not, however, polypharmacy.  Polypharmacy refers to mindlessly throwing prescriptions at problems without considering necessity, interactions, or possible alternative therapies. 

That’s the pills, folks, just the pills.  Still on weekly injections of methotrexate, and the rituximab infusions every four to six months.  Also on diet with very few animal products, as much exercise as I can tolerate (including our new Wii), and positive thinking. 

This inventory will have to do.  I have to go deal with a stinky, disobedient dog.



Weekend Ramblings

Yesterday I looked in the mirror and saw a pink person.  I had a gentle flush all over, like someone with mild sunburn.  My skin blanched, that is, when I pressed down with my fingertip, it would leave a light place, then I could see the pink colour coming back.  Today I wore a pink dress to the breakfast restaurant so I wouldn’t seem so pink.  Or maybe it was so my pink would just seem like a reflection of what I was wearing.  Actually, it didn’t hurt that the pink dress fit a lot better than it did last year when I bought it, and I thought I was looking good. 

I’ve had spells of sweats for the past couple of days, and everyone has noted how warm my skin feels.  I’ve also been a little tired, but not so I couldn’t manage packing and going to see my daughter and enjoying it.

I’m listing these symptoms because, with the infrequent dosing schedule, I tend to forget what the aftermath of rituximab treatment is like.  I just have a vague idea that I don’t feel great for a couple of days, then it’s okay, when actually, some very specific things occur.  The first of this pair of treatments occured four days ago, and will be repeated in two weeks.  I had post-treatment giddiness related to being around that roomful of cancer patients and knowing that, thank God, I wasn’t being treated for cancer. 

My daughter curtailed other activities and spent lots of time with me on this combined birthday-parents weekend visit.  Her dad was also there, and we shamefully missed every parents weekend activity and made our own plans.  I had a great time.  Saturday night consisted of my girl and her best friend hanging out in my hotel room.  We watched Madagascar and Shrek, talked and played on the computer, and they introduced me to blackberry Alize.  This was the twenty-first birthday, and it was absolutely perfect to be able to see her enjoying it.  Friday, at her favorite restaurant, she proudly ordered a beer and presented her legal ID. 

I drove home today listening to a great oldies station.  It should be the law that you have to go back and listen to some oldies once a month.  I heard “Dance to the Music” by Sly and the Family Stone, “Instant Karma” (John Lennon), some great ’80s disco music, ’60s Motown, Simon and Garfunkel, Billy Joel…just a huge array of great music without many breaks.  Did you know “Bridge Over Troubled Water” was the number 1 song the year I started high school?  Okay, me either. 

This weekend I put my knitting down long enough to re-discover my online Scrabble game.  I think I should give it a little spin now.  There’ll be more writing time this week. 


Losing Mothers and Keeping Life Open

I woke tired this morning, after a deliberately early bedtime and a seemingly comfortable night’s sleep.  It was a struggle to be ready in time for the 9 a.m. expected arrival of a workman, but I made it, and was disappointed when he did not.  He appeared two hours late, bringing a helper so that he could finish the task of washing my house in one day.  My brick-and-siding exterior was begging for that pressure washing and soapy scrub after four years of sloppy rain baths. 

I was also begging for something – what?!  I forced myself to put some things in the Pod, finish laundry, clean up the kitchen.  After some restful time on the couch watching Milk and knitting chemocaps, I gave in to a nap.  I am still tired.  The flare, barely disguised by a modest prednisone increase?  I’m seeing my rheumatologist tomorrow, then getting my first of two chemo doses on Wednesday.  This cycle will move on. 

Last June I talked about the loss of mothers that my daughter’s group of friends has sustained (, and today we’ve hit another of those days.  We heard about the loss of another mom from our old neighborhood and her high school group, as well as the grandmother of a good friend of hers.  I think I pointed out before that the parental losses she has witnessed have been overwhelmingly mothers, with only the rare father dying.  We have no explanation for this. 

The other explanation I don’t have is why they are gone and I am still here.  I have 17 years of lupus behind me, marked by a distinct improvement over the past year when I began rituximab treatment (the B cell killer).  Most of the women we lost were affected by such acute conditions, or by relatively short illnesses with fatal courses.  For the second time in my life, I feel that I’m still here for a reason. 

The first time I was overwhelmed with this feeling was when I was a medical resident rotating through the bone marrow transplant unit.  At that time, mortality from the procedure was 50%, and the patients were all younger than 40.  Children were coming to the hospital, staying long enough for me to become attached (weeks, sometimes months), and then dying.  I had one special buddy who was a preteen girl that I visited when I was on call.  I recently found a card that she wrote me after her discharge, thanking me for a hamburger I brought her on a slow night.  She died soon after, and I felt galvanized to work harder and throw myself into my clinical career.  I had to work “extra” and be better to make up for the dying children. 

Now my feelings about being spared are different.  There’s not the notion that I must make up for someone else, but that there are fruits of life I am to experience, good things.  I am not complaining about my life, or saying that I’ve earned anything better.  It’s just that somewhere inside me is the feeling that the best is yet to come.  Maybe it’s just my innate hopefulness and optimism, but I’m keeping my life open for it.