no bad news is good news

The doctors at Suburban decided to transfer Carmen to Johns Hopkins, and oh what a transfer it was--her ambulance got a flat tire, and her backup ambulance got lost so 2 hours after leaving Suburban she finally arrived at 5am at Hopkins.

At Suburban they suspected an infection, but after a CT scan saw that the tumors were slightly compressing the inferior vena cava, which became the prime suspect of the fluid retention. If this was the case they would put in a stent to help keep the vein open. But, luckily the medical oncologists at Hopkins decided to do a scan of the legs to see if anything else was going on. The scan showed that she has two blood clots one in each of her legs. So, the doctors have decided to do a de-blood-clotting procedure, where they stick a catheter in each of the affected veins and introduce a medicine that will dissolve the clots. Unfortunately, she will have to be in the ICU after this procedure to monitor the effects of the blood thinner closely. Hopefully this procedure will go well, and by tomorrow she feels better.

Tom and I are heading up to hang out with Carmen and Jose before the procedure and to sit around the ICU's waiting room. So even though there are risks associated with this procedure, the good news is that her liver and kidneys are function just fine.

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Carmen Mateo

My mother was first diagnosed with retroperitoneal liposarcoma in October of 2005. I had come home to see her in the hospital—during the removal of a cyst on her breast the doctors accidentally punctured her lung. It was during her stay at the hospital that they completed an MRI of her core (to verify the lung’s status) and found a large mysterious mass—a tumor. Though frightened by this news she was thankful for the discovery. Weeks went by as my parents spoke with other doctors and centers trying to figure out what this tumor was and what to do. Eventually she was diagnosed—liposarcoma, a rare type of cancerous tumor that manifests itself as a mass of fat. The irony of it—my mother the skinniest petite woman in the world, had a fat tumor. Right before Thanksgiving she went to Sloan Kettering to have surgery to remove the almost 8lb tumor. Being the strong woman that she is, she recovered quickly from the surgery and began her healing journey. It was years bef...

Decisions, decisions

I want to cry, scream and pretend like nothing happened all at once. More despair as yet another treatment option fails me. Another disappointment. Another set back. Unfortunately it's not just about my ulcerative colitis and trying to get myself healthy, it's also about how my UC has gotten in the way of my hopes of eventually having a family of my own. At least when there were more treatment options I could be hopeful of maybe one day feeling better and being able to start a family. But now I'm woefully aware of my limited options and the realization that I likely might not ever really get to be normal again. That maybe no medication I try will help. That maybe the one thing I have left is the utterly life changing surgery to have my colon removed. Willful hope, denial, stubbornness...I'm not sure what to call it, but I had always believed deep down inside that somehow I would find something that would work, som...

"Nothing with me is simple...

but I am STILL HERE!" - Carmen Today was another crazy day for Carmen, you know to keep things interesting. The radiologists looked at the ultrasound, and based on that thought that perhaps it wasn't blood clots but the compression of the inferior vena cava instead. So they did a venogram to look at the veins to verify the presence of the blood clots. As it turned out, there were no blood clots, and the fluid retention was based on the compression of the lower vena cava. The doctors put in 2 or 3 stents to reinforce the vein that was nearly completely compressed by the tumors, which took quite some time because of a minor hiccup. The second stent only half deployed, but was attached to the stent above it, and so they had to hold the top stent from above as they pulled the lower stent to fully open it. (To all my future doctor friends--I can't believe you are going to be doing crazy on the spot stuff like this. You guys are awesome!) Because Carmen was actually half con...

Nectar of Life

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