"Usually we think that brave people have no fear. The truth is that they are intimate with fear."
Title Quote - Pema Chödrön
I have found quotes to be especially meaningful lately. Maybe it is all this time at home, or maybe it is my ever evolving outlook on life. I have been told many times over the past couple of years that I am brave for what I have gone through, but I don't feel particularly brave. I am just doing what needs to be done to survive. Most would do the same. The difference between me and my former self, is that I have learned to overcome some of my worst fears. Once fear is confronted, there is no where to go but forward. Looking any other direction is giving in, and I am not ready to do that just yet. So, onward I go.
"We have two lives. The second begins when we realize we have only one." - Confucius
I shared this quote during a work icebreaker the other day. I didn't know it would be such a hit, until I received several personal messages about it. The brilliance of this quote, is that it means something a little bit different to everyone. To me, this quote was quite literal. It took me being told I could die, for my innocence and feelings of indestructibility (common in "youth") to be shattered and for my "second life" to begin. I am grateful every day for this new perspective. Life looks so much brighter these days, and cancer got me to realize that even the smallest things are beautiful.
My 6-month follow up appointment at the NIH, out east, was cancelled due to COVID-19 concerns. I had phone calls with my dietician, and nurse practitioner instead. I then had my 6-month labs drawn here at home while I was at the hospital for my monthly injection treatment. All my labs were good. My iron has remained within normal limits, so no need for another iron infusion, thankfully. Everything else was good too. In fact, now that my energy levels are returning, I feel healthier than ever. I have now lost just over 40 pounds. Having that extra weight off, makes me feel so much lighter and more fit, even though I have definitely lost a lot of muscle and need to get working on that now that my weight loss has almost stabilized.
Not sure if, or when, I will be headed back out to NIH for a check up. I am feeling good, so I am glad there is no rush for me to make the long journey at this point. I will probably just try and put it off until September, at which point I will be 1-year post op. In a way, it has felt like many years ago that I had my stomach removed, and in other ways, it feels like it was yesterday. I was just talking with my stomachless sister yesterday, and she said, "doesn't it feel like ages ago that we had our surgery and were walking the NIH halls together? Like sometimes I forget I don't have a stomach!" Yeah, oddly enough, me too.
Eating and drinking are coming along. I still have those random off days every once in a while. I call them, "My hard to swallow days." I still haven't quite figured out what causes it, but basically from the moment I get up, until the moment I go to bed, swallowing food and/or liquids is painful and a true struggle. I have to force myself to get things down, because if I don't eat enough one day, I know I will feel lousy and tired the next. Luckily, these hard to swallow days are getting less and less frequent. In the first few months after surgery, that was not the case and it was really hard to stay positive when I would have more than a few of these days in a row. It was frustrating, and scary. Now, it is maybe one day out of a month, and I know I will likely feel better the next so it isn't so bad. I just have to make it through 12-14ish hours. No problem!
I am broadening my horizons in terms of sweets. I haven't found much that I absolutely can't eat, except for some artificial sweeteners. Go figure, I can handle real sugar, but the fake ones do a number on my new gut. Before surgery, I was told this would not be the case, I was prepared to never touch sweets again, but I am very grateful for my progress. I always have sugary treats with protein first, well not always, and that was a mistake I won't be making again any time soon. Let's just say, "sugar crashes" with no stomach, are totally debilitating. I have never felt like that in my life, and it is not fun, so I will do my best to avoid it if I can. But, this is all a learning process, and trial and error is all part of it. My new faves are peanut m&m's, semi-sweet chocolate chips, rice crispy bars, and cereal. All in stomachless portions of course, but still sweet and satisfying. I know, these don't seem like big feats to all you stomach wielding folks, but to me, this is HUGE progress and helps my overall food outlook.
I have also found that I can drink small amounts of plain water! Some days I can drink more than others. And, some days this is still hard, or makes me feel nauseous, or feels stuck in my throat. But, I am trying at least a little each day. I have heard from other stomachless folks that you can "train" yourself to be able to drink it. So, I'm giving it a try. And, on the days it works well, I am enjoying it very much. Oh how I have missed you water!! I have also added coffee back into the mix. I find it goes down really well in the morning and helps me stay hydrated throughout the day. For those of you who have followed along on this stomachless journey since the beginning, you know that staying hydrated has been the hardest part for me and most new seahorses. Drinking like I did pre-total gastrectomy is just not possible. No gulping. No large sips even. Just small sips of liquid all day long, and very slowly or it hurts or causes painful, gassy, burps or hiccups. And, it is a very fine line. Because if I drink too much throughout the day, I don't have much of an appetite for food. Which is a new problem, because up until about 2 months ago, it was all I could do to get about 24-36 ounces of fluid down in a day. My dietician says I should aim for 2 Liters!! I'm still not to that point, but I am more hopeful since I have been able to get up to 48-60 ounces on good days. I use the veins on my hands as indicators of my hydration. For the first 4-6 months post-op, they were barely visible and sometimes sunken in. Now, when I am well hydrated, my veins are very visible and protrude quite a lot. Probably partially because I am a lot skinnier now, but I can still tell a difference in how they look between good and bad drinking days.
As of Friday May 1, 2020, I am back to work full-time. I have been part-time since December, so this is a big step. My long-term disability checks will officially stop, which is scary, but also exciting. I am moving on. And, work is going well. I am lucky to be able to work from home during this whole COVID situation. I can't afford to get sick and inevitably loose more weight, so I am happy to be able to stay safe. Andy is home too, which has been really nice. I am happy to be back at work, my co-workers have been so supportive, and I enjoy feeling challenged again.
My goal for May: Maintain my weight. I have been steadily loosing less and less weight each month, and I have also been able to consume more and more calories. I feel I can succeed at this goal, and I will be excited to remain at my current poundage.
"Throw kindness around like confetti." - Molly B., Kansas - Dove Chocolates...that's right. I'M EATING CHOCOLATE NOW!!
P.S. Last one, I promise. This one made me chuckle, and is from one of my favorite Instagram accounts. At first, COVID-19 felt like a cruel joke. I had literally just started feeling "normal." I had just returned to work, and Andy and I had many trips booked and on the calendar. Then...BAM. Stay at home until further notice. Now, about 7 weeks in, I see this as an opportunity to gain physical strength, perfect my eating, increase my emotional well-being, and slow down before emerging back into the world. I guess the world wasn't ready for me just yet. That's ok. I have had a lot of practice at this whole shelter in place idea, so not too big of a deal. I am enjoying my home, my husband, my furbabies, my neighborhood, my neighbors, the weather, working from home, and the spring flowers emerging from the ground. Please stay safe everyone.