Nectar of Life

Tuesday August 9, 2011 Daniel, Tom and I spent most of the day cleaning the house up and waiting for Carmen's hospice gear to arrive. Late that night she came home in an ambulance from Hopkins. She was extremely tired, but still mentally there and able to talk though it was through quite whispers.  We set her up in the living room so that she could be in the midst of all the action downstairs. She had made the brave decision to enjoy the rest of her time here at home with her family. Though she was in pain, she was happy to finally be resting at home. Jose slept beside her on the sofa, attending to her throughout the night. I was surprised that her condition had deteriorated since we last saw her on Sunday night-- that night she had walked around, sat at upright at a table to have dinner, fed herself easily, willingly ate, and was a bit chatty, but not extremely chatty for Carmen standards. By Tuesday night, it seemed her ability to move was limited, and she was subdued by the pa...

Today we are gathered to recognize the life of caring woman. To many, she was Dr. Carmen Mateo or just Carmen, and to a few of us she was Carmencita (Mari Carmen to her sister who just arrived from Spain), or mom to my brother Daniel and I. She was and still is an inspiration to us all, with her kindness, grace and strength. She was selfless always putting everyone first, whether it was a stranger, a patient, or her family.   As she would say, lo mas feito para mi. Carmen was full of love for the world, always wanting to take care of everyone. She touched the lives of all the patients she encountered while at NIH and in her everyday life. She was the type of person that you would meet once, and after a lengthy conversation, oh how my mother could talk, would make you feel like you were special. She is unforgettable; her inner beauty always radiating through her twinkling eyes and quirky smile. She had this aura of energy surrounding her that captiva...

Sing anyway. So the chemo trial is out of the picture. Whether it is because it is actually not possible to get Carmen in the trial, or because she does not want to go through the painful side effects of the chemo treatment that probably won't cure her disease, I do not know. All I know is that tomorrow (probably) she will be coming home for hospice care until nature takes its course. It is hard not to look back at all the things we could have done. I know this must be extremely hard for my mother, but we should not harp on things we can not change. It is also extremely hard for me to just accept that this is the reality of our situation, but we should have the strength and grace to support Carmen now in these difficult times. We have spent almost 6 years in this battle, where we have hoped for a miracle to fight what seems to be the inevitable now. I think the worst of this all, is the uncertainty. We simply do not know how things will go, it could be weeks or days. It seems ...

This has been quite a crazy weekend for the Serrano-Mateos. Carmen was still retaining a good amount of fluid, so she stayed in the hospital for further observation. Saturday Tom and I hung out with Carmen as Jose had to go be on-call. Since she had been on her feet for a good part of the day she was tired and in pain from the fluid building up in her feet and lower legs. Tom and I massaged her feet, which definitely decreased the fluid and pain. She was pretty exhausted, but still managed to sit at her table to have a delicious dinner that Daniel made for her. Daniel stayed the night with her, while Tom and I came back to Bethesda to celebrate Kim and Anya's birthday party. As terrible as it may sound, it was nice to have a night where I could be "normal" and hang out with my friends like any other 20ish year old. Not that I don't enjoy being with my mother, but all this has been very overwhelming and to have a night where I don't spend most of the night think...

Today Carmen spent most of the day laying in bed. She was still tired from yesterday and the procedure. Her fluid retention is slowly dissipating, but of course it takes time. She had put on almost 10 pounds of weight during this, so you can only imagine. Her liver and kidney enzymes are stable, which is good news as always. Her potassium levels were a bit high in the morning and a little less high in the afternoon, but still high enough to cause some concern preventing her from being released. Because she wanted to rest, we didn't stop by to see her today. Hopefully tomorrow we will know what is the deal with her potassium and maybe get released from the hospital. Fingers crossed!

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...

Carmen's procedure is tomorrow.... So after doing an extensive ultrasound of her legs (to map the veins for the procedure etc.) and a CT scan of her head (to ensure that she doesn't have any lesions that could bleed out during the procedure) there was no time to actually do the procedure, so it has been pushed back to tomorrow morning. Which is actually better because the ICU's night staff is a lot smaller (more people=more attention on Carmen) and Carmen had this afternoon to relax after her sleepless night. She was very tired and weak today, and because of it was feeling a little overly nervous about the risky procedure tomorrow. Her doctor assured her that the team was one of the best and that she had nothing to worry about, which made her feel a lot better. She also got some pain meds which made her feel a lot more comfortable and able to rest more, as she put it, "my body... is like nirvana." Carmen had a special visitor today! Anna stopped by her stompin...

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. Hopefu...

the tough get going! Carmen was very tired today. Last night she decided to stop taking the cortisone, because she thought it was making her retain a lot of water, so today she was a bit meh. While on cortisone she had increased appetite and felt very upbeat and energetic, so once she got off it, she was very tired and felt a bit down. So today we took it easy. Carmen and I drove to the farmers market at the Y, usually we would just walk up there, but it was extremely hot and Carmen was tired. We got some fresh veggies and fruits and headed back home. Carmen laid down to rest for a bit as we prepared another delicious salad- mixed greens, artichokes, radishes, onions, tomatoes and cucumbers with her Carmen-style "rice" (a mixture of brown rice, barley, quinoa cooked with cumin, cardamon, parsley and cloves). We had a nice lunch together (we were all here except Jose who went into the office for a bit) and then sat in the living room watching this movie/documentary call...

day by day...is how we are taking this journey. Yesterday's feast left Carmen feeling not so great, and gave her some trouble sleeping. This morning she did feel better, despite the lack of sleep. We had a relaxing morning lounging around the house. Jose and Tom where working from home, and Daniel had work later today, so we all got to hang out. Carmen, Tom and I then went to WholeFoods to stock up the kitchen, which was seriously lacking in supplies. Carmen was her usual self searching the entire produce section for the perfect fruits/veggies, and running around the store. Once she got tired she sat in this cool sitting area/cafe at WholeFoods. We got home and started making lunch as Carmen directed us from the sofa in the living room. We made a great mixed greens salad with radishes, onions, black olives, artichokes, tomatoes in a Carmen-made lemon-mustard vinaigrette. I made a quinoa salad with roasted veggies (red peppers, asparagus, mushrooms, onions) and grape tomatoes. We...