Fun with Needles

I spent most of the day today in bed. I guess the radiation treatments of last week sort of wore me out more than I had expected they would. But with all the laying around, it reminded me that this time last year, I was in the hospital. After I couldn't shake the 40 pounds (!!!) of water weight I'd gained during my liver resection in three weeks, my oncologist decided to do a CT scan to see if it would help them figure out what was going on. And what, exactly, did he find? A MASSIVE blood clot that extended from somewhere near my liver all the way down my left leg. Exciting, right? They admitted me to put me on an IV drip of blood thinner and to perform tests trying to understand where it came from. Unbeknownst to me and my medical team, I'd been a ticking time bomb for weeks. This is probably the closest I've come to death. 

Blood clots, as you know, can kill you. The really big ones will almost certainly kill you, because they break off and the pieces can get stuck in your lungs, your heart, or your brain. So why was I still alive? Well, the news was good and bad, and it was the same news: as the surgeon was closing up my liver after removing a little more than half of it, they stapled the edges. And the doctor accidentally stapled shut my inferior vena cava (IVC) - the largest vein in your body, which returns the deoxygenated blood from the lower half of your body back up to your heart - not once, but TWICE!! The clot was trauma induced - my body couldn't figure out where the blood should go, so it made a giant traffic jam. So, the same horrifying mistake that had caused my clot and created my edema and a host of other symptoms (nausea, lightheadness, massive pain, delay in getting back on chemotherapy) had also made it impossible for the clot to pass upwards into my heart or lungs. Phew - I guess? Talk about a double-edged sword.

Once they determined that this had happened, confirming it using a special procedure called a venogram, the next question was: what to do about this? Should they leave it alone or go for surgery to remove the clot and reopen the vein? It was a really risky proposition, either way. People have lived with transected (closed) IVCs, but most of them are the result of war wounds and happen to healthy young men, not to cancer patients (who are more prone to blood clots than the regular population), and certainly not to cancer patients who are a couple of weeks out from having had the majority of their livers removed. Plus there was the fact that my kidneys seemed to be not working very well, as indicated by the edema and 40 pounds of water weight gain. Oh, and the pain! The pain of even walking around the block was excruciating - if I made it around the block, I would have to take a double dose of pain meds and stay in bed the rest of the day. One time, I crawled up the stairs so I wouldn't have to walk. It hurt that much. On the other hand, the surgery would be a very complicated and tricky affair, involving a host of the hospital's top doctors, who would be reopening the site of my liver operation plus cracking open my chest so they could get a bird's eye view of what was going on below. Again, the delicate state of my health was a major factor. As my vascular surgeon told me, "On a scale of 1-10, this surgery is a 9." Yikes.

So, pumped up on pain meds and already in a bit of an anxious state, I was supposed to make this extraordinary decision about my life. After many discussions with many, many people, my husband and I decided to go ahead with the surgery. The surgeons were optimistic and wanted to go for it, and so we did, too. It was set for the following Tuesday morning (5 or 6 days away), and they sent me home from the hospital to rest up and be with my loved ones. But then, over the weekend, as I tried to enjoy time with my family and especially my babies, something amazing happened: my kidneys kicked in, and within those two days, my edema disappeared. I lost all 40 pounds of water weight! This was an excellent sign that my body was working hard to recover from this disaster, and that not only were my kidneys working well but that the blood flow to the lower half of my body was also improving markedly. 

This significant change in circumstances prompted another round of calls and discussions - this time, they took place over the phone. Multiple doctors - my oncologist, my vascular surgeon, my liver surgeon, the chief resident of the surgery team that had done the original surgery, and I can't remember who else - all chimed in with their opinions and ideas throughout the day on Monday. (And, in a moment that was truly surreal, I was on the phone with one of the surgeons and the other line rang. When I checked the message, it was the hospital, reminding me what time I had to be there for surgery in the am and what I had to do to prepare for it! So this was really a last minute decision. Can you imagine? I can barely imagine, and it happened to me!) One by one, the doctors suggested that we skip the surgery. That it was too risky. As you can imagine, I was perplexed and somewhat disillusioned with my medical team - with one exception, they had all strongly stood behind the idea of the surgery last week - especially since it was hard for me to be objective about this situation and because I was drugged up on pain meds. And whatever I decided, I wouldn't be able to change my mind - it had taken so long to find the clot and the staples that the clot was at the point of basically scarring over, so in another two weeks or so, it wouldn't be able to be removed at all, and although they could reopen the IVC with a surgery in the future if necessary, it would involve fake parts and other variables that made its long-term success somewhat less likely.

In the end, I decided against the surgery. With my body building new blood vessels and my kidneys doing their jobs well, it seemed like the best decision. I still have symptoms from it, especially edema, which comes and goes at its leisure - I can wake up one morning with a 10 pound weight gain for no discernable reason - and my blood pressure tends to be unreliable. I still have pain in my back, but nothing like it was in the days immediately following the liver resection. I also have to take a daily dose of blood thinner - good-bye, steeps and bumps; good-bye, water skiing; good-bye to my future plans to become a WWF wrestler - and it's an injectable.  Usually, they recommend that you take this drug in your belly, but with the huge network of collateral veins that have evolved to take the place of my IVC, attempts to shoot up my belly invariably resulted in nicking a vein and thus gave me monstrous (think dinner plate size at their worst) black and crimson bruises across my abdomen that took weeks to heal. So I take them all in my upper arms. I still get bruises:

a particularly unflattering view of my upper arm

but they're not so bad. They do keep me from doing some of my old favorite yoga poses, though. All in all, it's not a terrible trade-off. But if you know me in real life, well, maybe keep this picture in mind next time you have the urge to squeeze me on the arm or give me a hug.