The Daily Dump

life with CDH1, and everything that follows

We’re getting a makeover

I’ve decided (free time permitting) to keep up with this blogging thing– its been a great outlet during my recovery, and I’ve really enjoyed sharing my experience. This will be my last post here at the ‘rachelkinney.wordpress’ address. I hope you’ll continue to follow along on my new site: Foodie With No Stomach.

Instead of focusing just on my surgery and recovery, I’ll be casting a wider net and sharing more of what’s going on in my kitchen, my fitness strategy post-TG, and news/happenings in the gastric cancer community. Basically, if you’ve enjoyed reading my wholly ‘me’ focused posts, you’ll still get some of that, but you’ll also get some good food porn and other extras here and there! Hope to see you over there 🙂

Two months post-op

Since my last post, I’ve connected with more CDH1 bloggers—Originally I had been following (more like lurking on) a few blogs here and there looking for pointers and tips for myself on what to expect during my recovery. Little did I know that one of those bloggers had found me as well! From Marne’s page I linked up to a few others. This a rare genetic mutation, and probably even more rare to find others willing to share so openly about their experiences with it, so I’m thankful to have been connected to so many, and hope those connections continue to grow. One thing I’ve noticed is that every blog I’ve come across has a really positive, go-get-em tone/attitude. Not sure if positive people are more likely to share, or if sharing openly about tough situations makes you more positive. Hmmm. I’ve included links to the blogs Marne shared at the bottom of this post. Never know who might find their way here through a google search, so I figure it doesn’t hurt to have the information posted in two places. Steve Dang’s “Farewell Stomach Tour,” makes me feel a lot less guilty about the tasting menu Drew and I splurged on when we took our trip to Quebec City right before my surgery!

There are a lot of shady things that go down on the internet and through social media, so I’ll take all the warm fuzzies I can get from positive connections being made across the globe!

Recovery Progress:

I continue to progress in my recovery and haven’t hit too many bumps or hiccups since my last update. Life seems to be (mostly) returning to normal—I’m back into the 9-5 grind of the work day, back to weekly meal/grocery planning, and the Big Guy and I are embarking on some new home improvement projects. All those weeks cooped up inside during recovery (and, during this never ending winter we’re having in the Northeast) gave me plenty of time to come up with a fairly extensive list of projects and ideas for putting our mark on our place. I’m excited to see it all come together—picking paint colors, agonizing over first world problems like window treatments, accent walls and the dangers of participating in a trend (I’m looking at you, grey color palettes and chevron area rugs).

My new relationship to food seems to be a pretty positive one– I’m not sure if my portion sizes are getting closer to normal, or if tiny portion sizes are starting to become the norm, but either way, I seem to be able to tolerate just about everything. Since I started back on normal food, there hasn’t been too much of a strategy in what I eat. With the objective being to get calories in and maintain a weight, I find myself picking foods based on specific cravings rather than thinking about a truly balanced diet. Thankfully I enjoy cooking, so on week nights I’m good about preparing a well balanced meal for Drew and I. During the day I should probably try to replace my usual snacks of ice cream and goldfish crackers with some fresh fruits, nuts and vegetables.

I’m really thrilled that food hasn’t become a negative experience for me. Where some people take up writing or photography as a hobby for creative expression, mine has always been cooking. From start to finish- browsing the farmer’s market (sometimes with a list, sometimes making impulse buys), planning a meal, trying a new flavor combination, recipe or preparation method, and then ultimately sitting down with friends, family, or just the Big Guy and literally breaking bread together. Eating and dining are hugely social experiences, and I’m glad that I don’t feel too much like the odd man out in those settings. I am definitely not as interested in agonizing over the ‘right’ restaurant choice or jumping on board every latest food trend and, frankly, maybe this is a good thing. I’ve also learned that foodie anxiety and the constant hunt for the most artisinal/small batch/heirloom/hyper-local items is pretty annoying for everyone but the foodie. See Portlandia for a hilarious exaggeration of what I’m talking about.

One unexpected improvement in my cooking habits is that I am more relaxed about cooking in general. Not every meal has to be a made from scratch masterpiece fit for pinterest or 100’s of instagram likes. I still make those masterpieces (at least, I think they are masterpieces), but they’re more special, intentional and thought out. On nights where we want to keep the kitchen clean and spend our limited free time with friends or each other, a package of store-bought ravioli and a jar of sauce will do just fine. The kitchen is one of my top happy places so I’m happy to be back to enjoying it, and I’m also happy that I’ve balanced my over-the-top foodie compulsion to always make the ‘best’ meal with a more relaxed attitude. I’ve danced around the subject for a bit now… what I’m basically saying is I think I’m less of a snob now. And that’s a good thing. I forgot how good a simple grilled cheese sandwich and tomato soup could be! 😉

Basically, things are fairly mundane for us right now—but considering all we’ve been through in the past 60+ days, we’re thankful for boring :). I told a coworker the other day, 2014 is the year of home improvement. 2015 will be the year of white sandy beaches.  (She was quick to point out that 2015 sounds way more fun. I tend to agree).

Links to other CDH1 Bloggers:

Life Without a Stomach:
http://www.ourlittleweb.com/marne/

http://dangsteve.com/

http://cytosinedeleted.wordpress.com/

It’s the beginning, not the end.
http://www.beginningnottheend.blogspot.com.au/

Genetically Challenged
http://geneticallychallenged.wordpress.com/

Eating is a full time job

I’ve been out and about a good deal since my last update—running errands, searching high and low for some pants that fit, and just generally having a bit more activity in my days. Getting out of the house so much has been a real morale booster, and helps me keep the boredom at bay. This week I am planning to get back into the gym for some light cardio. Dr. Wang was very clear that I should do no sit ups, swimming, or anything else that engages by core until 2 months after surgery. He did encourage getting other types of exercise or light cardio and I’m looking forward to regaining some of my fitness level. Just like everything else, I’ll be patient and ease my way back into things. The last thing I need to do is ruin all of my great recovery progress by giving myself a hernia!

On Monday I am returning to work—I work from home and without a commute or extensive morning prep routine, I feel like I can get back to work sooner than I would have otherwise. Being engaged and having to stick to a bit more of a schedule during the day will be good for me, and will get me out of this kick of taking naps every day. I’m convinced I don’t really need the naps anymore, but they’ve just become routine (confession: I still might take a lunch break cat nap here and there).

I’ve read on a few other folks’ blogs that right around 6-8 weeks post-op, a lot of people have some backwards progress in terms of being able to tolerate foods, and having heavy discomfort following meals. I have experienced bits of this for the past couple of days. My theory is that, as things have gotten progressively better, I have gotten less careful about what, how much, and when I am eating. Yesterday was actually pretty terrible—I had 3 meals (instead of my usual 5-6), paid zero attention to taking small snacks between meals, did not stay hydrated during the day, and probably ate too quickly when I did sit down for breakfast/lunch/dinner. Basically, I wasn’t thinking about eating whatsoever, and was just winging it. My absentmindedness set me up for a crummy food day. After every meal I had terrible cramps and a lot of pain. I was warned that going too long between eating or drinking would make for unpleasant symptoms once I did eat something, but I just was not paying attention yesterday. Not a happy camper. Lesson learned, and here’s what I’ll do differently to avoid another day like yesterday:

  1. Hydration: keeping water, tea, etc. by my side as often as possible, and continuously sipping throughout the day. One thing I have noticed with absolute consistency is that when I keep my fluid intake consistent and near constant throughout the day, my meals and snacks seem to sit a lot more comfortably.
  2. Schedule: like it or not, eating is a job now. I need to get more structured. I’m prepping some snack sized portions today so I’ll be able to grab and go during the workday. I think it’s just hard to get all the gears in motion again once they’ve come to a full stop, so I’ll make sure to be nibbling and sipping regularly between meals to keep everything moving.
  3. Slow Down: Get back into the habit of being overly cautious and eating more slowly.  

Today I started the day slowly with a protein shake (something I had been neglecting to do for the past week) and am going to do my best to follow the rules above. I hope I can make it to see the end of the game tonight—this old lady starts fading fast around 9PM these days 😉

January 26: Boston, Being Social and Date Night!

Thursday

This past week was a great one—I shouldn’t be surprised, but I really am impressed every day with how much the pace of my recovery has sped up in these past two weeks. On Thursday we went to Boston for one more follow up with Dr. Wang. When I had my moment of truth with the scale at the Dr’s office, I weighed in just .5 lbs lighter than last week (for the record, I was wearing a lot more layers last week!). I was glad to have maintained the same weight, and so was Dr. Wang!

As far as my recovery goes, he was very happy with how I am doing and gave me some tips on massaging my incisions to encourage them to flatten out—currently the one larger incision (the one they used to take my stomach out) has been really bumpy and uneven. I’ve also been using Vitamin E to reduce the appearance of the scars from my incisions. The massaging feels weird, but after just a couple of days I already notice a difference in it flattening out. Just one of the many pieces that go into proper bikini season prep 😉

Dr. Wang also did a more detailed review of the pathology on my stomach with us. Of 33 lymph nodes identified in the stomach and surrounding tissue that was removed, 0 (zero) showed any evidence of cancer involvement, and there was nothing to suggest that any of the (tiny) foci of cancer cells in my stomach had spread anywhere beyond my stomach. Glad we took care of this when we did!

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Friday

On Friday I was expecting to wake up feeling totally wiped from the previous day’s trip to Boston. I was pleasantly surprised that my energy level seemed to be pretty normal in the morning–  I took advantage of this and used the day to run a few errands. In the evening we went to a local event in town called “The Taste of St. Albans.” It was a really great event—tons of local vendors and producers offering small tastes of food, wine, beer and other treats. It was the perfect event for someone like me. Each sample/tasting was just a bite or two, and we took our time going from booth to booth—I couldn’t have over eaten or eaten too fast even if I’d wanted to! We ran into a few of our new friends and neighbors and it was really great to just be out and social. I slept really well that night—stayed in bed until just before 11AM the next day… I am usually a very early riser and just get ancy feeling like I haven’t accomplished anything in a day, so I guess I just needed the rest. I’ve certainly learned a few things about just slowing down and taking it easy when I need to through this whole process.

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Saturday

Saturday was a lazy-ish day. We slept through breakfast and had a big lunch (well, I had a little bit of lunch, and then came back for seconds about an hour or so later). Once in a while, I am hit by major fatigue after eating a meal… I haven’t been able to pinpoint whether or not this is because I ate too much, or if it is a specific type of food causing this crash, but I crashed hard after lunch yesterday. So, even though I had slept in well past any respectable time in the morning, I got back in bed and zoned out to an episode of Keeping Up With the Kardashians (No, I’m not ashamed of that, and I really hope that Kris and Bruce are able to work things out). After my siesta, I was re-energized and got some light housework done and hung curtains in the dining room—see, I did do at least one productive thing yesterday so it all evens out!

In the evening we finally got our date night in— I got dressed up to what Drew calls, “weekend cute” and we went to an early movie and grabbed some dinner right after. During the movie we split an order of popcorn and a diet soda—popcorn is a perfect snack for me because its mostly air. I can eat as much as I want without worrying about eating too much. It’s nice to have that as a go-to snack! At dinner I ordered a half turkey sandwich and cup of clam chowder—I ate about ½ of everything on my plate and the Big Guy helped me in finishing everything up. Drew ordered a small meal, knowing he could top off with my leftovers if he was still hungry. I think we’ve developed a good system for eating out! On the way home I felt really full, and had maybe one minute where I felt a nasty cramp, but otherwise I did great for having a really good volume of food (for me, anyway!)

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Next Steps:

Now that my energy level is returning and I have a good sense of what ‘safe’ foods are, I don’t see too much reason for why I shouldn’t return to work soon. Hopefully they’ll take it easy on my for the first week or so when I return 😉

(Finally) clean out my closet. Almost every day I say “I’m going to try on everything I own and donate what doesn’t fit anymore.” And then I come up with a lot of excuses for not doing so. Time to bite the bullet and let go of some favorites! (and maybe make room for new favorites?).

January 20: Making More Progress at Home

Things at home are going really, really well so far. The main highlights:

  1. Still maintaining the same weight.
  2. Continuing to eat a wide variety of foods with lots of success.
  3. Controlling eating pace and quantity is starting to become natural.
  4. Drove myself around (solo) on a few errands this week (nevermind that I had to take long naps afterward to recover).
  5. Drew’s been working around the clock updating IT stuff at his offices, so we weren’t able to get that goal of a date night accomplished, but we did go out for breakfast on Saturday. I’m proud of how I managed my intake and eating pace with a giant restaurant portion of homemade corned beef hash and poached eggs (my favorite) staring me in the face.
  6. We had people over to watch yesterday’s football games and it felt great to be back in the kitchen preparing food for guests.
  7. Still need to take naps every day. I’m sure I’ll get my energy level back soon.
  8. Bottom line: I feel more normal every day!

OK now all the details for those that want to read a novel.

It may have been mostly in my head, but getting that feeding tube out earlier in the week was a game changer. I’m moving around a lot more confidently, sleeping better, and have a bit more pep in my step. In the past few days I have worked in a few more ‘new’ foods. Most notably, spinach. I know this sounds really boring, but everything is new again! I previously assumed vegetables and roughage would be the last food to add back into the rotation. In my head, these foods would be tougher to break down and therefore tougher on my gut to handle without the help of a stomach. I made my version of spanakopita (basically, I follow a traditional recipe and add in whatever meat/protein I have on hand to make it a one-dish meal). It is out of this world if you can pick up lamb merguez sausage at your local store or butcher—but it works great with plain shredded chicken breast (what I used this time) as well.

My take on Spanakopita

My take on Spanakopita

As long as you aren’t making your own phyllo dough, it’s a pretty quick/easy weeknight meal that reheats well. I am proud to say I had not one, but two small portions of this dish, and I didn’t feel any of my typical gurgling/mild cramping that I had grown to view as normal following any meal. Also, I was able to take in sips of water with my meal for the first time—typically I have to choose between eating and drinking because of the lack of real estate inside of me. I suspect that the fact that all that spinach takes longer to digest (the very thing I was afraid of) actually caused my gut to slow down and take time digesting. Perhaps when I was eating pastas, grilled cheese sandwiches, and other ‘simple’ carb-based foods, my gut was just going full force and getting ahead of itself since that stuff breaks down so readily. Truth be told, I’ve actually never been a fan of most pasta-based dishes, so I’m happy to reduce their frequency in the rotation anyway. I’m going to make a conscious effort to incorporate more fiber-rich vegetables and whole grains into my cooking this next week to see if I can confirm that this works for me.

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I mentioned in the highlights that we went out for breakfast this weekend. Not quite date night, but I’ll take it! I ate a ‘me’ sized portion of my meal and pushed my plate to the side—not because I was displeased or done, but because I just couldn’t stop nibbling on the meal with it right in front of me. Restaurant eating really is a test of self control. The server was convinced there was something wrong with my meal and asked if I wanted to send it back because I ate so little. I think I’ll have to get used to that happening!

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I think from here on out I’ll prefer having folks over to watch games or do other longer-term afternoon activities rather than sit down dinner parties. When everyone is hanging out for an extended time, EVERYONE grazes the entire time and they all eat at ‘my’ pace so I don’t feel as singled out. At a dinner party or restaurant, my food issues are a bit more obvious and hard to conceal. I even had an entire can of seltzer water (first time carbonation agreed with me) while watching the game. Carbonation has been my ‘excuse’ for not trying any craft beers since surgery (these used to play a prominent role in the Big Guy and my weekend activities)… I think I’ll still be cautious and hold off on any alcohol for a while. I’m doing really well and just don’t want to throw a wrench in things. There are a lot of great hard ciders available locally here in Vermont, and that’s what I really miss. But I think I am quite a ways off from trying something that sweet just yet. Baby steps!

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This week we go back to Boston one more time for a follow-up with Dr. Wang. I think he’ll be pleased with the progress I made. Having the appointment earlier in the week to get the feeding tube out has given me more motivation to maintain my weight. My goal is to weigh in at the same weight for this Thursday’s appointment. If my weight is lower they won’t make me put the tube back in (it’s a whole other surgery to put a feeding tube in, so once it comes out, it’s out), but I just want to show that I could maintain my weight without it.

Thanks for reading– that’s all for now!

January 15: Tube Free and Home Alone!

My feeding tube was removed yesterday—the difference in my ability to move without pain and stand up straight was almost immediate. What a huge win! Most people don’t seem to have many issues with their feeding tubes, so I guess I was just one of the unlucky few. Either way, I am so happy that the last tube is outta here! I’m almost a normal person now! (If normal people count the number of times they chew their food and take naps after any normal physical activity).

After some back and forth with the surgeon’s office in Boston and Fletcher Allen, we were unable to get ahold of the local surgeon at Fletcher Allen to make an appointment yesterday. So, Katie, Mom and I packed up and drove to Boston in the morning. Considering it was a 4 hour drive (both ways) for a 15 minute appointment, I think they win Mother and Sister of the year.  They more than deserved the glasses of wine we poured for them when we finally got back home at the end of the day.

Since I have the tube out, and really had such immediate improvement in my comfort level and mobility, Mom and Katie packed up this morning for the long, gray drive back to DC. With Drew returned to work full time and Mom and Katie gone, I’m home alone for the first time in a month! Also, it looks like my wishes for a thaw to clear the ice from our sidewalks came true.

I am looking forward to:

  1. Bundled up walks around the neighborhood and getting my activity level up a bit.
  2.  I’m still pretty stiff and twisting/turning around is a bit of a challenge, so I asked Drew to turn my car around in the driveway so I wouldn’t have to back out… not sure if I’m brave enough to go on a solo car trip any distance away from the house just yet, but it is nice to have the option!
  3. Tagging along on Drew’s next trip to the gym to walk on the treadmills. If I get too tired, there are some big comfy couches in the lobby area of the gym where I can read a book and wait for the Big Guy to finish up his Big Lifts.
  4. Go on a date with the Big Guy! He deserves a night out. Right? I’m sure I have something in the closet that fits… and the oversized look is in now anyway 😉

When we were in Boston, the doctor that saw us did peak into my file and gave us a preview of the detailed report from the pathology that Dr. Wang will be going over in detail with us next week when we return for our true follow up visit. The pathology revealed 3 foci of cancer cell growth in my stomach lining; each less than 1 mm in size. There is obviously no telling how long they would have stayed that small or how long they had been there, but it confirms that the bad stuff really was in there, and it was only a matter of time before it grew out of control. Considering the size of the foci, I am still in awe that the random sampling of biopsies from my original endoscopy even picked anything up.  After we got out of the appointment I texted Drew to tell him we should probably buy some lottery tickets with our lucky streak!

I have maintained my weight for about 6 days now– and hope to keep up the good work on that front. I still have a feeling I’ll level off at a lower point than I am now, especially once I am back to a normal activity level. I’ve read of all kinds of complications that can take place from loosing too much weight too quickly.. so let’s avoid that altogether!

January 13 – The Foodie is (slowly) Making a Comeback

Today marks 24 days post-op, and I think that overall I’m making really great progess in my recovery. I’m doing better and better with solid foods, and while I’m no where near ‘normal,’ just yet, I am starting to see how I can eventually work toward that.

This weekend my sister flew into town so we’ve got a bit of a full house—Its nice to have everyone around, and Katie is newer to the scene so she doesn’t mind it as much when I ask her to get me {fill in the blank} when I don’t feel like getting up 😉

For the past 4 days I have been off the feeding tube, and have been maintaining a steady weight. I’m probably nowhere near 2000 calories per day just yet, but I think this shows I’m at least consuming enough to maintain my weight. As I’ve said before, on average most patients level off somewhere between 10-30% of their previous body weight. Right now I’m sitting right on that 10-15% line that I’d hoped for previously, so I just need to keep up the good work! I suspect this weight maintenance is coming in large part as a result of my extremely limited activity. If I were to start a workout regimen right now (not that I could), I would probably see the lbs drop off. But, that’s ok. I can’t really start any strenuous activity again til I hit that 8 week post-op mark, so I think I have plenty of time between then and now to work on the diet. Slow and steady.  Our neighbors, Pete and Bailey, had us over for dinner last night—Bailey whipped up a really great soup, which I ate too fast. I got stomach cramps and had to have Drew walk me home early. Just when I think I’ve got it figured out! I guess I need to stop eating things that taste so good. Maybe then I’ll slow down a bit.

Also, not to bury a lead or anything, but its looking as though my feeding tube will be coming out early—this is good and bad. Good, because I hate this thing and just want it out of me. Bad, because the reason it is coming out early is because the site of the tube is extremely irritated and likely a bit infected (which, for the record was exactly why I was worried about having any feeding tube at all in the first place). It has always oozed just a little bit (sorry, graphic), which I am told is fairly normal. Despite changing the dressing regularly and cleaning it thoroughly each time, I think having that moisture  and whatever gastric juices were mixed in there sitting against my skin just irritated it to the point that a little infection was able to develop. This morning it was really painful—every time I moved felt like someone was putting a drop of rubbing alcohol in a cut. We had to soak the dressing in warm water to get it off of my skin because the ‘ooze’ had dried. Overall, extremely unpleasant, definitely gross. We consulted with the visiting nurse and with the surgeon’s office, and all agreed that if I wasn’t using the feeding tube, and it was causing this issue, we may as well schedule to remove it sooner rather than later. I agree!

Originally, we were planning to drive down to Boston tomorrow because the surgical team really pushed that they would prefer we be seen by the team who originally performed the surgery.  I could understand their point and didn’t fight them too much on it—in general, I was just happy to be getting this taken care of and having to drive 4 hours was a small price to pay. About an hour later they called back to get the contact information of the team that had made my original diagnosis at Fletcher Allen (our local hospital) before I went to Boston. It seems they had a change of heart and, considering how simple of a procedure it is to remove a feeding tube, they will try to coordinate my getting in to see someone at Fletcher Allen today or tomorrow.

That’s all for now—I promise to do a more detailed food update once we get this feeding tube issue resolved—that’s really the main focus right now!

January 10 – The Food Update

I am a solid 21 days post-op. Pain management really isn’t too much of a concern anymore—I’m going on two days of not using any pain meds or Tylenol. If you know me, you know I’m not the type to be stoic—if it hurts, I’m not ashamed to admit it and take a dose. If I’m not taking pain medication, it’s because I’m really not in pain! I have been sleeping better at night—I think in large part because of the pain subsiding. I can only imagine that means the internal healing is moving right along. Energy level is still a bit of a wild card, but I just take naps when I need them and don’t try to push it too much.

I have gotten a lot of questions from everyone along the lines of ‘so, how do you eat?’ and ‘removing your whole stomach? So what do you do about food?’ All of the questions are extremely well meaning and from a place of genuine interest and concern, but I’ll admit, it was kind of adding to the overwhelming feelings I was having that revolved around whether I would ever be ‘back to normal’ after this surgery. Especially while I was limited to solely a liquid diet, and couldn’t even handle a few teaspoons of yogurt, the last thing I wanted to do was explain a food strategy. It was all I could do to drink 4 oz of fruit smoothie over an hour, I didn’t want to get ahead of myself by going into some long explanation of how my new normal would be 5-6 small meals a day and a conscious effort to drink water and tea all day for hydration. Sure, that’s the goal, but in the moments where I could barely consume any volume, I didn’t want to talk about getting into a healthy regimen because I’ve honestly questioned over the last two weeks how that would even be possible. I was sticking to the cautious schedule of 7-10 days of liquids before trying any solids, and to be honest, I was just afraid to try solids at all.

Fast forward to dinner last night—Mom baked a chicken, roasted potatoes, and broccoli. While she was cooking, I made a broccoli cheddar soup that I (mostly) pureed with the immersion blender. While Drew and Mom were eating their dinner, I had my soup which was thick enough to qualify as a soft solid. Being brave, I took a piece of roasted potato and carefully chewed the heck out of the whole thing. Went down great! I know it sounds like such a tiny thing, but this was the first thing I’ve chewed in 20 days. Last night I re-read a blog of another CDH1 survivor who really carefully documented her ‘food journey’ post- surgery. Reading her blog I realized she started on solids a lot earlier than I did, and had a bit of renewed confidence to just try some things today.

Today I ate:
Breakfast: 1 scrambled egg, 1 slice of bacon (again, lots and lots of chewing)
Snack: ½ cup of coffee w/ nesquick added (because why not), a few sips of mango smoothie
Lunch: 1/3 of a large restaurant sized portion of cheese ravioli w/ marinara, 1 large piece of garlic bread, and a few French fries stolen from my mother’s plate.
Snack: 1 (small) piece of toast with butter. Lots of glorious butter.
Dinner: we haven’t had dinner yet, but I plan to attempt some leftover roast chicken and a little bit of whatever sides we come up with for dinner.  I worry the chicken might be too fibrous for me just yet—maybe we can soften it up by reheating it with some gravy or leftover marinara sauce?

Today I learned:

Eating that much for lunch was really, really stupid. It all went down fine, but I ate too quickly and about 20 minutes after eating, I was hit by some major stomach cramps and chills. I was back and forth from the table to the restaurant bathroom (I have no idea what the staff thought of us, but really, I don’t care).  It took between 40 min- 1 hour for the cramping attack to pass. I think I felt what might be considered nausea during this period, but I have no idea how I would even throw up without a stomach, so it was all just rather weird. In the moment, I felt like crap, but I’m really happy I kept it all down, and I learned a valuable lesson. Mom made a great suggestion—in the future if I order out at a restaurant, I should ask for an appetizer plate and serve myself a portion on that and then stop eating for 10-15 minutes to see how I feel. I think it was just the giant portion and huge plate at the restaurant that made me feel like I hadn’t eaten that much, when in all fairness, I probably had what would be considered a ‘healthy’ portion of pasta. We all know how out of control restaurant portion sizes are!

Despite the small setback of the cramping and nausea I had today, I’m counting today as a win. It felt great to eat a normal meal, and even better to sit in a restaurant. Even if I did just order boring old cheese ravioli. It was delicious!

Right now I’m not as worried about a full-on food regimen as I am about just figuring out what I can tolerate and trying to keep my volume as high as possible without going overboard. Once I’ve got a good sense of what I can tolerate, I’ll be more interested in really tracking my macro nutrients and making sure I hit the right numbers for protein, carb and fat intake.

This was quite the long post, but that’s all for now!

January 7 Update #2: Cancer Free!

I went from making no updates for almost a week to two in one day, but I figure I shouldn’t sit on this bit of news.

Dr. Wang is still in Argentina for a medical conference, but took some time to check in with Drew via text to discuss the results of the pathology that was performed on my stomach and the lymph nodes that were removed during the surgery. He said with confidence that all cancer was removed from my body with the surgery, and there was no evidence of cancer activity in the lymph nodes. I’m taking this to mean that, as we hoped for, the cancer cell growth was superficial and limited only to my stomach lining. Going in, we knew this was the most likely outcome, but that really didn’t mean anything until we had some actual confirmation. This is huge—no chemo necessary. Once I recover from surgery, that’s basically it, and we can just get on with our lives.

This is great news, and could not have come at a better time. I was in a bit of a funk all day—probably just tired from yesterday, I made the mistake of attempting to eat yogurt again,  and getting fed up with not ‘being back to normal’ yet (I know, I know, I’m not even a month out of surgery and should be a bit more patient). This news definitely lifted my spirits—not to mention that starting at around 4 PM today, our front porch was a revolving door of deliveries—flowers, cards, care packages, etc. from friends and family. I should probably buck up a bit and turn that frown upside down, eh?

What a good note to end the day on—now I will celebrate with some creamy tomato bisque courtesy of my Mother-In-Law and a movie rental on Netflix—exciting times!

January 7 Update- 18 days post surgery

I have lapsed in making updates to the blog lately—many apologies! The reason for the lack of updates is mainly because there isn’t that much to update anyone on (which, is good news!). I’m still working to tolerate more full liquids and cycling through on the feeding tube every day as well to get some extra nutrition while I work toward taking in more real food.

My energy level comes and goes, and every day usually involves some kind of nap. Yesterday there was a break in the sub-zero temps so Mom and I went on a field trip to browse through a few local furniture stores. Having lived in smaller apartments before buying our place, we have a few empty rooms in our house so I’m always on the lookout for a good deal to chip away at some of that empty space J. I woke up this morning feeling like I’d done the mother of all ab workouts yesterday— when I think about it, all of the walking around stores and getting in and out of the car multiple times was probably the most activity I’ve seen since before the surgery. I’m sure I’ll have plenty more mornings like this where I’m paying for the previous day’s activities, but I think in the long run, as long as I’m not over doing it, pushing myself to be out and about will go a long way toward fighting off any kind of slump, boredom or worst case, depression from just being so limited. Maybe we’ll get a January thaw that will clear the sidewalks and make walking around the neighborhood a viable option for my daily activity (hey, a girl can hope!).

For the short term future, I think my days of increased activity will likely be followed by lower-key days of recovery, but as long as the overall trend toward feeling ‘normal’ again is positive, I’m ok with that.

Now that I’ve had a week at home, and about 5 days of ‘full liquids,’ I’m starting to learn what I can and cannot tolerate. So far, I tolerate warm, creamy soups best, and am able to take on the most volume of those without feeling too full. Beyond that, smoothies and this super-rich Califa Almond milk are going down pretty well also. The colder, sweeter, and thicker something is, the less easily I seem to tolerate it (ice cream, yogurt, etc). I’m still trying to have a taste of those things here and there, but I’m not pushing it. I got a bit carried away with a Liberte yogurt the other day and without thinking just ate the whole container in about 5 minutes. I was paying for that with some painful stomach cramping and other unpleasantries for the next hour or so. Lesson learned. Eat slowly, and with caution J

Other than that, there isn’t too much to update. We have an appointment in Boston on 1/23/14 at which point Dr. Wang will evaluate my progress and hopefully remove the feeding tube. Now that I’m well on my way to healing from the surgery, the site of the feeding tube is really the only thing that gives me consistent/continuous discomfort. It is tender, and my biggest complaint is that it is on the side of my body that I usually sleep on, and also prevents me from sleeping on my stomach. This may sound like a small thing, but you try forcing yourself to sleep in a position that you are not used to! Harder than it sounds!

My sister, Katie, will be flying in this weekend. I would really like to get into Burlington to walk around a little bit and, if I’m feeling up for it, actually go out to lunch somewhere. I’ll probably just order a cup of tomato bisque or something similar, but it will feel good to be out and doing normal things. Hopefully the weather cooperates!

That’s all for now, and I’ll try to be better about posting updates more consistently. My email and facebook message inbox tells me there are folks out there who are still interested in hearing about my progess, so I won’t leave you hanging!