My First Setback

by Marilyn B.

Read Marilyn's story and track her journey…

Well, I had my first setback yesterday. I have a blood clot in the area of my port (non-occlusive thrombosis in the subclavian vein). I started having symptoms this past weekend. I was pretty tired on Saturday and never really rallied, and then on Sunday my left arm began to swell and discolor.

I had a "doppler" sonogram yesterday that confirmed the blockage. My doctor thinks it is directly related to the port. The options were to remove the port or to go on blood thinners. Removing the port is not an option for me. I don't think I could go through chemo—either physically or emotionally—if I had to revert back to a needle stick each time. I simply don't have the veins for it, and through the years of really bad "sticks," I have developed a strong aversion to the needle. Which brings me to the blood thinners. …

So I started taking blood thinners yesterday—one pill and two injections every day. The oral Coumadin will take one to two weeks to really be effective. In the meantime I will have twice-daily injections of Lovenox. I will have my blood tested every two to three days to determine when I can stop the injections. My doctor assumes it will be between 7 and 14 days. As you might imagine, the news just about put me over the edge. But I feel much better today than yesterday.

I had a good friend come around to give my husband, Jonathan, and me a how-to lesson on giving shots (thanks, Meredith!). Unfortunately, the pharmacy screwed up, and I couldn't get the drug until late last night, so we practiced with a pen. Meredith kindly reminded me that I had ample flesh in the thigh region so that is my target area. I initially thought I would be able to give myself the shots, but once I got the needles home, I realized that I am not that stoic. Jonathan was great in giving me my first shot last night, although he needs to work on his bedside manner. When he saw the syringe, he said, "Wow, the needle is a lot bigger than I thought it would be." Thanks, dear! My morning shot was much more routine.

The hope is that the swelling will go down in my arm within a day or two (keep in mind that this is my "good arm"). My goal for now is to enjoy the rest of my "good" week and keep things in perspective. My sister-in-law Anthea arrives on Sunday for treatment week and Jonathan will also be home, so I'm pretty good in terms of caregivers. Thanks for your support.