Time

Rereading a collection of essays by Reeve Lindbergh, I came across this quote by theologian Donald Nicholl: "Hurry is a form of violence exercised upon time."

I liked that quote. I liked it so much that I stopped reading and wrote it down right then.

Hurrying to capture it, as it were.

In the fall months before I was diagnosed with multiple myeloma in late 2004, I would get to a point every evening where I would be so cold and worn down that I would fall asleep in the very hot bath I had drawn to warm my chilled and aching body.

That memory is particularly strong these days because lately I have been getting to a point every evening where all I crave is heat and relief for my chilled and aching body. If I am not careful, I doze off sitting on the sofa, clutching a warm corn bag. When I fall into bed at night, it is with gratitude that I do not have to try to be capable of one more act, one more thought.

This winter I have dealt with a multitude of annoying medical matters, most of which turned out to be nothing, but all of which turned out to be inconvenient and tiring while they were occurring. A few, the cholesterol issue in particular, have lingered on into spring. I see both my personal physician, the amazing Pat, and my oncologist, the equally incredible Tim, in April. To the former, I will say "we need to come up with a new approach to the cholesterol." To the latter, I will say "I sure as heck hope the symptoms I am experiencing are related to the statin I am now taking and not to the myeloma."

I think (hope) it is, but I do not yet know. I may be whistling in the dark. Again.

All of this medical stuff, minor as it may be, has sharpened my awareness of time. Again. Time, time, time. How much time has passed already? Lots. How much more time is left? Don't know.

A blogger who writes about his myeloma for The Myeloma Beacon recently wrote about the effects of living with this disease for six years: "Multiple myeloma takes its toll.  A physician once told me that between the disease itself and the treatments, it wears you down.  I am certainly not what I was six years ago."


I know of what he writes. Myeloma, even when it is quiet (like mine has blessedly been), messes with your mind. It messes with your sense of time. 


Myeloma, including the reality of it one day reemerging, makes me want to hurry. Maybe that is in part because I don't know what I have left in terms of time but more likely it is because I know - for real, for sure - that time is finite and limited.  


And then I bump up against Nicholl's words: "Hurry is a form of violence exercised upon time."

I worked a very short day today, finishing off my 24 hour week before 10:00 a.m., before breezing out of the county building and walking home. I conscientiously walked slowly, not hurrying, not rushing. We are in the midst of a warm, early spring and today is more of the same. The air was gentle and every bird on the block was joining in the morning chorus. Crocuses, snowdrops, and daffodils are in bloom everywhere. Forsythia is budding. I walked slowly enough to see a sprinkle of white violets in the yard down the street.

I walked slowly enough to loosen my grip on time and linger in the moment.

Time takes enough of a pummeling from me as it is.  It is time to give time (and me) a break.

Cancerland's Top 40 Hits

Sometimes my body reminds me in no uncertain terms that I live in Cancerland.

Today is one of those days.

When my cancer had the upper hand, before it was diagnosed (and even afterwards for many weeks), I felt different internally. I was not "sick" exactly, but not "well" either. At best, it felt as if there was a constant turmoil in my body. Was I coming down with the flu? Did I pick up a virus? At best, I constantly felt that a creepy-crawly prickling sensation both inside and out. (We won't discuss the worst days.)

When I first met Tim, my wonderful oncologist, and told him about it, he speculated that my body was trying to fight the cancer, much like it would any other infection, and I was feeling the fallout from the battle.

The first time after my stem cell transplants that I felt that internal battling sensation, I knew - just knew - that my cancer was back. It turns out it wasn't. So as soon as I stopped hyperventilating, I asked Tim why was I still feeling this way?

He said that there is evidence to suggest that when the body has undergone some major medical trauma such as a stroke or cancer, the physical trauma imprints itself in the memory. For unknown reasons, the body then randomly "replays" those physical memories and the occupant of the body feels the traumatic symptoms just as if they were happening all over again "for real."

Today is one of those days in which my body has decided to replay "Cancerland's All Time Greatest Hits." Like a radio alarm clock, it was playing bright and bouncy when I opened my eyes this morning. It's still going strong at the mid-morning mark.

It is annoying and a real drag, both physically and mentally.

Don't get me wrong. I am grateful that I am still around to listen to my internal DJ spin these tiresome tunes.

All the same, "we now return you to our regular programming" can't come soon enough.

The Numbers Racket

2400.

No, that is not my daily caloric intake. Nor the number of times Warren and I have…well, you know. Nor the balance in my bank account.

2400 is my latest IgG Immunoglobulin count, delivered to me this morning by Dr. Mitchell, who is not my regular oncologist, which made this number all the harder to hear.

2400 is not a number I wanted to see. While it is not a horrific number, it is enough of an "uh oh" number that after the doctor calmed me down, he told me which tests he wanted to order immediately to better interpret that number. He wants to know how much of that number is polyclonal (i.e., okay) and how much of that is monoclonal (i.e., BAD)?

That lead to a discussion of finances and costs and self-paying patients, which is me. In the end we focused on the two tests he insisted on and decided the rest can wait. Even the two most important tests are pricey, so there went another itty bitty piece of my peace of mind. Dr. Mitchell talked about bargaining with the hospital on the charges, and while I can appreciate the wisdom of that strategy, I finally looked at him and said "I understand what you are telling me. But I am tired and this takes so much out of me."

(And I was in tears too, which is never a position of strength for me.)

Now there was lots of good news in today's lab results. My IgA and IgM numbers are rock solid, as are my white and red cell counts. If the myeloma is reactivating at a furious rate, those numbers start to get shaky quickly. Those numbers, my level of physical activity, and the fact that my weight is not plummeting, are all positive signs.

All the same, 2400 hit me hard. That's my highest IgG count since February, 2005. Back then, Tim (my regular oncologist), Pat (my wonderful personal physician) and I were celebrating a number in the low 2000s, because the previous count had been 6100.

If Tim had been there today, we would not have been celebrating.

Tim Moore and I go back to November, 2004, when he confirmed what Pat had already discovered: I had multiple myeloma. I can still remember that initial consultation. After discussing what I already knew about my blood work, Tim said that while there was a slim chance otherwise, the blood work was so devastating that he was certain it was multiple myeloma. Despite knowing that was what he was probably going to say, I burst into tears and said an obscenity (not one of the nice ones), then immediately apologized because I didn't know him at all and didn't know if I could say that in front of him.

I could. We bonded immediately and that bond has never been broken.

As the nurses scheduled my tests and next appointment, they kept handing me tissues. I have been with many of them for almost five years now and that made it easier to let my guard down. It also made for a wad of shredded, wet tissues in my pocket by the time they got me scheduled.

Warren was with me today, as he usually is on my oncology days. He walked me to the laboratory; he had appointments he had to keep and I was going to be awhile longer at the hospital. As he kissed me goodbye and said he loved me, his voice broke. There were tears in his beautiful blue eyes.

I hate making my husband cry.

Back in November of 2005, Tim and I discovered that the transplants I had just undergone did not "cure" me. My latest biopsy and blood tests indicated that there was still something going on. Tim said it could be a benign abnormality that I will live with always. Or it could turn back into myeloma again. He then gave me an analogy that has stuck with me ever since.

"April, imagine your blood cells are Russians and we have a picture of them all standing there in Red Square. We know everyone in the picture is Russian. But we can't tell by looking at the photo if they are KGB agents or not."

I am waiting to see if they are KGB agents.

Life goes on though and I am more than ready to move on with my day. Early on after I moved to Cancerland, I decided I could wring my hands and weep all day every day or I could pick up the pieces and make the most of what I had. I have never regretted choosing the latter path.

As I once wrote my friend Larry, who also shares this disease, "screw myeloma." And that's how I feel right now. Screw myeloma. It's today I need to live.