Waiting on Pins and Needles (Mostly Needles)

Almost a year ago Paul got blood clots in his arms (if you want to read about it I have moved the posts over. You can read them at http://dorktasticoddments.blogspot.com/2006_01_01_archive.html and http://dorktasticoddments.blogspot.com/2006_03_01_archive.html).

Here is a brief summary for those of you too lazy to go read: Paul’s arm randomly got hugely swollen and red (we called it the “Emergency Sausage Arm”). We went to the hospital. He had a large clot in his shoulder area and a bunch of smaller clots down his bicep. Since then he’s been on blood thinners and has had a gijillion blood test both to make sure that his blood thinners are at the right level and to determine what caused the clot.

One of the bajillion blood tests that Paul had when he first got the clot tested the Antiphospholipid Antigen levels in his blood. High Antiphospholipid Antigen levels can cause clots, but do not necessarily cause clots (so it could have been a random clot or it could have been because of the high levels.) The high levels in turn can be caused by a number of things including, but not limited to, the following:
1) An undetected cancer (this option has now more or less been eliminated through further testing)
2) Antiphospholipid Syndrome - APS (also called Phospholipid Antibody Syndrome or Hughes Syndrome)
3) A virus
4) Random fluctuation

In January, when Paul had his clots, his AP levels were 25 (positive result), at his next test they were 18 (indeterminate result) and at his last test they were 8 (negative result). For comparison, a normal person has no antiphospholipid antigens in their blood at all. The gradual decrease likely means that the original result was not a random fluctuation, however it is good that the levels are dropping because it means that it is less likely he has APS. The hematologist was not confident enough that Paul was fine to take him off the blood thinners without further testing though. If his next test comes back negative or with no score at all, she will be relatively sure that the clot was caused by increased Antiphospholipid Antigen levels in his blood which were caused by a virus. That would mean that once the levels were low enough he could go off the blood thinners and he would likely never have a clot again. If the levels increase then there will be further testing and likely longer relationship with the blood thinners along with all of the consequences that brings.

Today Paul took his last blood test. It will take roughly five more weeks to get the results at which point he will have been on blood thinners for a full year; a year of increased risk of hemorrhaging and easy bruising, without carrying heavy things or playing hockey, but also without blood clots, stroke, blindness or heart attack. It seems a fair trade to me.

One of my greatest fears when we got married was that I would be widowed within the first year of marriage. (I know, I am a crazy person). We’ve successfully passed that threshold but we're not out of the woods yet. Until we get the results of his last tests, we will be waiting on pins and needles (mostly needles, he has to have blood tests on average twice a month) to find out if he is safe. Until then I will just hold him a little closer, hug him a little tighter and cherish the time we have together.

C is for

Today we finally had Paul's appointment with the hematologist, 6 weeks after discovering the blood clots.

She went through Paul's medical history, examined him, and laid out the information as she saw it.

There are three possibilites for a cause of the clot:

Most likely - Carrying in 70 pounds worth of IKEA boxes a week before our hospital visit caused an injury to the blood vessels in his shoulder, resulting in the clot (I brought this up the last thing before we left - since Paul didn't mention it - and the doctor seemed extremely relieved by this and hopeful that it was the cause rather than the other two or some unknown factor).

Possible - He had high Antiphospholipid Antibodies in his blood. The levels were higher than normal but not so high as to indicate anything certain. This could potentially indicate a blood disorder that led to the clot or it could be normal fluctuations. He is having the levels re-tested in April and September to see if his levels are consistently high, usually higher, or if that was an anomaly caused by the blood thinner injection at the hospital.

Least likely - Possible cancer in the pelvis or abdomen - he has an appointment for a pelvic/abdominal ultrasound in April.

He will be on blood thinners until at least October, which is when we go back to see her. He is allowed to start being more active, but still no lifting and no contact sports - nothing that is hard on his arms.

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It always amazes me the impact of the C word. Cancer. It chills us to our marrows, flushes us with panic, and makes us cling tighter to our loved ones. Cancer is larger than life and even though it was the least likely option, it was the one that both of us fixated on.

Everyone has a cancer story: a lump, a mole, a lost friend or family member. Someone who fought to the end, someone who lingered too long, someone lost too suddenly, or someone who fought it and won. There is nothing good about cancer, no hidden benefit or positive side effect. You wouldn't wish it on your worst enemy, even on your worst day.

The scariest thing about it is that it's an overgrowth of the very cells that make up your body. It's not an outside invader, it's your own body turning against you, out of control with growth. To defeat it, you have to kill or remove a part of yourself, surgical sectional suicide. Cancer is synonymous with terror, which seems irrational but sometimes isn't.

I guess you know you're grown up when C is not for cookie anymore.