Nectar of Life

I remember us a year ago, sitting around our table after spending hours in the kitchen cooking up a feast. We sat there holding hands, giving thanks for a year of health and love. This year was different. You weren't there with your bright smile and twinkling eyes to tell us through your thick Spanish accent what you were thankful for this year. Though you weren't there, I knew you were there looking over us, your family, being thankful for our health and love.  Of course we all missed you, I know you would have had a blast at Thanksgiving this year with Tom's family, but I still feel like you were there with us. Though you aren't around to read this, I just wanted to let you know what I am thankful for. I am thankful for you, and all the years that I was able to spend with you. I am thankful that there is so much of you that I see in myself. I am thankful for everything you have taught me, and how you have shaped who I have and will become. I am thankful for your

Today was hard--living through the pain of good bye all over again. This time it was so much more real. When it first happened, it was all so sudden, all so surreal. She had been dead just over a day or so. All of my emotions then were suppressed by this layer of shock. Today, everything was all too real. Everything that happened had settled over time and her absence had become all too apparent. I walked into this familiar church, a church that I had know as a child from my summers in Spain--the last time I had been there was for my first communion. I was surrounded by my extended family, many strangers who had grown up with my mother, and our close Dutch friends, Rob and Dory, who had moved back to the Netherlands. As I sat there next to my dad, brother and mom's sister, I felt the reality of her death, her complete absence. It was a beautiful ceremony, my dad gave a very touching speech about their story. This time I could not push back the tears that came trickling out. Much lik

What if Carmen had done her CT scan in December/ January instead of February? What if she had had surgery then instead of doing a trial chemo treatment? What if she had done these things and was still alive because of it? (then I would not be here in her home town saying good bye to her again) I hate these what ifs. I hate that they spin around in my head at these times, when there is nothing left that I can do about it. I guess I feel partially responsible for everything that happened. What if I hadn't been so worried about traveling around the world this past winter, that I had been able to help convince my mother to go do her CT scan earlier? What if I had been around when she made the decision to start the trial chemo treatment? What if I hadn't spent that last few months of my mother's life thousands of miles away from her? What if I had spent more time with her all these years? What if I hadn't taken her for granted? What if we hadn't assumed that it was the

It has been about 2 months since I last saw my mother. All things considered, I am doing fine, however there are times that the sadness of my loss floods my heart through teardrops streaming from my eyes. The pain is still very real, the loss still surreal. I sometimes forget that she is actually gone, that she isn't back home with my dad and brother, that her spirit is actually somewhere watching over us. The memories, photos and notes can't replace her, they can't even come close to even capturing her essence. But still, I seek them for comfort for they are as close as I can get to her right now. She has visited me in a few of my dreams, in each one radiantly beautiful, the charming brightly spirited Carmen she always was. In my dreams she is healed as if her cancer had never existed. I like to think that it is actually her in my dreams, her soul coming to visit me letting me know that she is alright, that she is finally healed and blissfully happy, like she said she wo

In life there is death; in death there is life. These past few weeks have kept me extremely busy as I prepared for my big cross-country move and kept my mind off of things. I am finally getting settled into my new home and slowly realizing the reality of everything that has happened. I have been pretty strong throughout most of this process, because I am my mother's daughter and because of the wonderful support group I have-- my amazing friends, my supportive family, my rock of a boyfriend and all the other wonderful people that have extended kind words to me and my family. I could not thank all of you enough. But in this calm after the storm, I can't help but feel my heart ache from her absence. Perhaps this feeling is heightened by the fact that I am thousands of miles away from everyone I know and love (Tom is back in the DMV for a wedding, so I am alone here in LA) or maybe it is all just starting to actually hit me. I miss being able to talk to her. I really want to he

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 captivated

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. Hopefully

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

My mother gave me the best birthday present ever—her release from the hospital! We took one last walk to the administration building to visit the massive Jesus statue and say a few words together before heading home. Carmen looked wonderful today after a good night’s rest (she was able to sleep through most of the night yay!) and another solid breakfast. The cortisone has been really effective in reducing her discomfort and nausea, so she is able to actually move around during the day. Unfortunately the cortisone is also responsible for some water retention, which is a little worrisome for Carmen because of the additional weight and the liver/kidney function implications. On the bright side, Carmen does look better with the extra weight. We all went out to O’Donnell’s in the Kentlands for a delicious birthday “lunch” (which really was at American dinner time). Having my entire family and Tom together to celebrate my 25 th birthday, was the best thing I could have ever asked for

Yesterday was a long day of tests and waiting. Her liver and kidney test results came back ok—slightly off, but nothing to be too concerned about. The CT scan confirmed the presence of the liver metastasis, which is not the greatest news, but it is the reality of our situation. Carmen looked a lot better, despite being exhausted from a day of being poked and prodded. Her abdominal pain and her nausea had subsided which was great news. She had not met with the surgeons, so no news yet in regards to the possibility of surgery. The doctors had determined however, that the abdominal/intestinal pains and nausea were associated with part of the intestine being impacted by the tumors, so the put her on a steroid to help reduce the inflammation and ease digestion. Last night we sat there as family around her bed, talking and listening and though some of the things we spoke about were hard to process and sad, Carmen was very calm and at ease. Her strength amazes me more and more every si

I guess I never thought that it could happen so quickly. Her tumors have expanded her stomach, compressing her entire abdomen area, causing her a lot of pain and nausea during digestion. This quick deterioration, which my dad mainly noticed this past week, is the reason for their early departure from PR and their appointment at Johns Hopkins today. Today she will get countless labs done- verifying her liver, kidney and other vital organ functions as well as CAT scans and MRIs to identify the lesions on her liver. What we hope for today is that her organs are functioning well, such that the surgery team recommends removal of the tumors. Yes, another risky surgery—what my mother tried to avoid this year by turning to yet another trial chemo treatment. But at this point, seems to be the only temporary salvation. If not then what? If not, then we are faced with the beginning of the end. Making her comfortable—feeding her through IVs to avoid the pains of digestion and kee

 Today I felt the pain of mortality stab me in the heart. I have always been optimistic of my mother’s condition, knowing that with optimism and hope we could battle her cancer and finally overcome her disease. These past few years since her diagnosis of retroperitoneal liposarcoma in October/September of 2005 have been a rollercoaster of highs and lows, getting through it all. I tried to be strong for my mother, show her the strength she has within, assure her that she is doing everything she can to heal herself, and that surely she is on her way to recovery. I thought that in believing in her and her strength that she would be able to overcome anything. With every returning tumor she was better equipped to heal her body, to teach her body to heal itself. I was there supporting her through her surgeries, her trial chemo treatments, always there letting her know that she was on the road to recovery. Today after finishing her second round of a trial chemo that seemed hopefully, s

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 before