Nectar of Life

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...

Cancer strikes again. Another sarcoma another loved one taken well before their time. This time, my poor sweet 5 year and almost 7 month (just 4 days shy) dog Rico had to be put down last week due to osteosarcoma, bone cancer. The keystone of our small family, gone and with him all sense of family -- leaving a large sense of emptiness in our huge home and hearts. Tom and I got Rico together when he was just 3 months old from a shelter, and immediately he became an integral part of our lives. With him we learned what it meant to be a family and what unconditional love felt like -- how even when Rico was a total monster we couldn't help but love him. He was diagnosed with osteosarcoma in January 2017 and spent most of his time doing well, until basically the past couple of weeks that were a downward spiral. It was really hard to notice the differences since we basically spend 24-7 all together (thanks to working from home and being super lame homebodies). But looking back it was...

A recent post on facebook about a couple's fight against breast cancer reminded me of so much my family went through during my mother's fight against lyposarcoma. While looking through the pictures and watching the videos, a flood of memories and emotions washed over me. I felt the sadness, uncertainty, fear, and determination in the woman's expression and couldn't help but see my mother's image.  Disease has a funny way of snapping us into reality--reminding us that we are mere mortals and that life is fleeting.  Right now I am facing my own health battle. In mid December I was diagnosed with ulcerative colitis, a type of chronic inflammatory bowl disease where the lining of my colon is essentially self-destructing. Upon being diagnosed, I had this flash back to the moment when I first found out that my mom had cancer. The shock, the questions, and anger. What was this disease? How long would I live? As a chronic illness how would it change my life forever? W...

This mother's day marks the beginning of a completely new tradition. In years past, my family and I would get together and have brunch at Black Market Bistro or cook up a delicious Spanish late lunch. The years that I was abroad, I would call home wishing my Carmencita a happy mother's day, making sure that Jose and Daniel were treating her to an amazing mother's day. A few years ago we started the tradition of gardening the day away. Years ago when I was younger, my brother and I would wake up early and make her breakfast in bed-- a random assortment of foods carefully brought to her on a tray that she would happily eat, with our help of course. This year is different. The duality of time never ceases to amaze me, how it can simultaneously feel so long and so short. It has been 133 days since you left us. Those 133 days feel like so long ago, so long since I heard your voice, felt your touch, saw you. Sometimes it feels like you are slipping away, like I can't rem...

2011 was a roller coaster of year with amazing highs and depressing lows. It all began with my four month adventure around the world with one of my best friends followed by a month long vacation with my boyfriend. This adventure had been almost a year in the making, and after quitting my job in January I was off to experience the world. During my travels however,  unbeknownst  to me for the most part, my mom was fighting her battle against cancer for fourth time since she had originally been diagnosed six years ago. Looking back at those months now after my mother's passing, I of course wish I had been able to be there with her, helping her with her fight. It's hard not to think that maybe if I had been there with her, things would have gone differently. I know that if I had decided to stay and not go on my travels, Carmen would have been upset and disappointed in me for passing up such an amazing once in a lifetime experience, especially since...

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 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...