1 month follow up

March 23, 2019

I just go back last night from my 1 month follow up appointment at the NIH.  The appointment went great, but getting there is a bit of a different story.  So let me back up a bit and fill you in on the details.  Matt and I flew home on Tuesday March 5.  And boy were we ready to be home.  Our flight was in the morning so we had be at the airport bright and early.  We left the hospital on the airport shuttle at 7 am when it was freezing outside.  If I remember correctly the temperature was in the teens as we were loading up in the shuttle.  We were both a bit anxious to have the day be over.  We both knew it was going to be a long day of fairly uncomfortable travel.  Shuttle rides are never pleasant for me as I tend to have some motion sickness.  So I sniffed peppermint oil all the way to the airport.  And it felt so good to get out into the crisp air once we arrived.  I had packed some snacks and protein drinks to take on the plane with me.  I knew security would be an issue with the liquids so I got a letter from my Dr on NIH letter head explaining my situation.  TSA was very understanding and let me keep it all for the day of travel ahead.  I’m so glad my hubby was there with me to navigate all of that though since there was lots of walking and then standing around waiting.  When we arrived in Phoenix I can’t even begin to describe the joy I felt when our kiddos were there to pick us up.  It was amazing to see their little faces and feel their big hugs.  I sat in the back seat between the two of them to hold their little hands and chat with them on the 30 minute drive home.  They were super excited to see us as well.  It was almost like they couldn’t believe we actually came home.  Our daughter, the oldest, kept saying “you are never allowed to leave for 2 weeks again.  That was too long!”  I could appreciate that statement.  Haha.  

The next week was a bit of an adjustment as I now had 2 very active excited children with me.  Thankfully I had so much help from my husband and mother in law (Grandma).  I didn’t have to worry about getting my oldest to school or picking her up for that matter.  Grandma was able to get her to school everyday, play with our youngest, and then pick up her up when school was out for the day.  And then a good friend offered to bring Emma home from school every day for a couple of weeks after this first week.  It is so humbling to let so many people in our lives help us so much.  We are so appreciative.  Not only did I not  have to worry about getting Emma to school, I didn’t have to worry about making food for anybody either.  Several people dropped food off for us for a few weeks and my husband was amazing at just figuring meals out.  My days were consumed with eating, drinking, sleeping, and then repeating many times.  So it was a godsend I was able to focus my energy on what my body needed.  I was feeling good and getting a bit bored of the same food options every day so I decided to venture out on March 14.  That morning I decided to try one of our homemade breakfast burritos.  It’s got eggs, spinach, onion, and mushrooms (all cooked of course).  And it went well.  It took me a while to eat it but I was able to eat most of it and felt good the rest of the day.  So the following day, March 15, I decided to have another one.  Again, went down pretty well and felt good the rest of the day.  

That evening I had plans to go to a St Patty’s day walk/run even with a friend.  Originally we were going to run the 8K on March 16 just before heading to Maryland for my original surgery date of March 21.  But since the plans changed I wanted to try to walk the 1K the evening prior to the run (March 15).  So we met up and walked the fun 1K kilt run/walk.  We chatted and got caught up on each other’s lives.  It was fun.  Then we decided to get a bite to eat for dinner.  We chose pizza (since pizza had been going well for me so far).  We ordered the margherita pizza.  I knew it would have tomatoes on it, but I thought ‘they’re cooked, they should be fine just like the pizza sauce’.  At the time I didn’t think about the skin or the seeds of the tomato.  So finished dinner, went home, and went to bed feeling just fine.  Well, I woke up in the middle of the night with pretty bad abdominal cramping.  In my on and off wakefulness from the pain I thought to myself “it has to be from the tomatoes”.  Woke up nauseated the next two mornings.  Just not feeling right.  Went about my day not eating or drinking as much as I had been.  This was the first time I actually vomited.  I was nauseated and my appetite was almost nothing. I forced myself to eat at least a little throughout the day. Monday I was feeling much less sick to my stomach.  Oh wait, I don’t have a stomach. Haha. *insert knee slap*.  Okay much less sick to my tummy. But no food looked or sounded good. I struggled with this and not having an appetite for the next several days and dry heaving daily.  Which then spiraled into a mental battle quick. This was the week of my 1 month appt. I was scheduled to leave Phx Thursday to fly to Maryland and have my appointments on Friday. I was very nervous about this trip as I planned on traveling alone and the way I had been feeling made me weak. I felt very dehydrated and drained of any energy.  I spoke with the NIH dietician, Rachael, on Monday and just talking to her about the foods I had been eating was making me so sick that I had to put her on hold to dry heave into the kitchen sink. This was the worst I had felt since surgery.  I was definitely not expecting to feel this bad especially since I had been feeling so good.  My energy level was so low I laid on the couch for days.  All of these physical hurdles we causing lots of mental hurdles as well. I really started to feel down about myself.  I was only 3-4 week post op and finally realized, with the help of Rachael,  I needed to be kind to myself and give myself and break. She told me to write down all the positives that are happening. Like being able to tolerate water with fruit in it or eating pizza on the daily.  So I made a mental note of all the positives happening right then and there. Every time I started to feel down about my progress I would remind myself of the positives and it would help me tremendously. It’s amazing how fast your mood can improve and stabilize just from practicing a little gratitude daily.

So now to present day, Saturday, March 23, 2018. I am tired. I was literally in D.C. for less than 24 hours.  Arrived in Maryland at 8pm Thursday night and flew out of D.C. at 5:30pm last night. Which put me home at 7:30 last night.  

But the trip was really good. Both flights went relatively well as I forced myself to eat even when I didn’t want to every 2 hours because I knew this was going to be what gave me energy.  First thing yesterday morning I had an appointment for labs and then a DEXA scan because they couldn’t get me on the schedule before surgery since it had been moved up a month kind of last minute.  I was so tired and just not feeling super great that I started crying when I needed to lay down for the scan. I hadn’t laid flat since surgery (because of my now risk of severe bile reflux) and was so nervous to do so for even 15 mins that I started crying in front of the tech. And then she started crying!!  She has a 4 month old baby therefore still pretty post-partum with emotions and all. I felt so bad. Haha. We had a good laugh about it. Then I laid flat for a whole 15 minutes.  And it felt amazing with no reflux (at lease nothing noticeable) and I was so excited to be able to do this from time to time. Haha. 

Next came my clinic appointment with the surgical team.  Rachael (dietician) and I had a very lengthy talk about how to get rid of he negative associations with food. My brain is just trying to protect me from getting ill again. She said every time I felt decent I should eat something even it if was something small. And every time I didn’t get ill from eating it should make those positive connections again. Anyway, taking with her, the NP and my surgeon really turned my mood into something more positive. I couldn’t believe I was sitting around feeling sorry for myself when I could have it so much worse.  I knew it was time to make an appointment with my counselor.  But I do recognize I can’t control the nausea so my NP prescribed me some medications. Fingers crossed they work!

SURGERY

March 2, 2019

Wow, today is a Saturday and I am 9 days post surgery already.  This has been quite the whirlwind.  10 days ago I never would have imagined things are going as well as they are at this moment.  Okay, let me slow down a bit and catch you up with some of the small details since surgery.  Just in hopes it might help somebody in anticipation with surgery.  

SURGERY DAY:  Honestly this entire day is a bit of a blur.  I was so nervous that I don’t even remember much about pre-surgery stuff.  The last thing I remember in pre-op is saying bye to my hubby and then getting set up in a ‘chair’ almost like a massage chair while sitting on the stretcher so the anesthesiologist could place my epidural.  She said “I’m going to start giving you medicine to relax you for this procedure” and then I don’t remember a thing.  Apparently they put the epidural in and brought my hubby back to sit with me until the OR was ready.  I was awake and talking like normal, but can’t recall any of it.  Fast forward to the recovery room and I barely remember waking up a bit teary.  My hubby was there which was amazing and he said I was a bit teary before surgery as well.  It’s amazing what Versed does to your inhibitions.  At this point I didn’t feel pain at all.  I was very comfortable and had no nausea.  It was everything I could have hoped for immediately post-op.  The ride back to my room is a bit of a blur as was transferring back on to my hospital bed.  Once there a long nap was in my immediate future.  I wasn’t hungry, I wasn’t thirsty.  I was comfortable and totally willing to rest.  I had a foley but couldn’t really feel it.  My history of lower than normal BP had a few people alarmed as it was even lower than my normal.  So they did a bit of adjusting with the epidural which was totally fine with me.  I really couldn’t care less as long as I was comfortable.  The only complaint I had was shoulder pain and let me tell you it was painful.  So I kept my heating pad on it which helped a bit.  Other than moving and walking there’s not much you can do for the deferred shoulder pain.  

POST-OP DAY 1: They had me up to the chair bright and early this day.  Lots of incentive spirometer using and trying to ambulate at much as possible.  Shoulder pain continued but got a bit better the more I was up and moving.  Just did some walking within my room this day.  And honestly still wasn’t hungry but my mouth was very dry.  Ice chips and sips were helping greatly with that.  Those ice chips are amazing!

POST-OP DAY 2:  They let me start with clear liquids!  I was on a fluid restriction of 200ml every 6 hours just to be sure everything for the operation was good to go.  So I was sipping from a medicine cup most of the day to ensure I didn’t take in too much fluid.  It felt so good to drink although I remember wishing I could just get some real good water to just drink down.  

POST-OP DAY 3:  I started on very slow full liquids today.  My mouth continued to just be dry and yucky feeling.  Full liquids were going down pretty well in the morning.  I was feeling hopeful this was all going okay.  Then, in the afternoon as I was sipping I started to feel a reflux feeling.  It kind of felt like heartburn with a feeling everything was trying to make its way back up.  I was not comfortable.  So I reverted back to ice chips.  This was quite a discouraging afternoon and wore me out. 

POST-OP DAY 4:  This same discomfort continued.  This was Monday, so my attending surgeon was back to the hospital and described it very well.  I was constipated at that point.  Hadn’t pooped for at least 2 days prior to surgery.  So he was explaining that if my transverse colon is backed up with poop its going to make it difficult for my liquids to pass down my intestines past that colon.  This really helped me mentally that I just needed to pass some stool in order to feel better.  So they started me on some stool softeners, laxative, and suppository.  Which resulted in a small stool, but it really helped me feel better so I felt comfortable starting on full liquids again.  And was able to sleep a bit more comfortably.

POST-OP DAY 5: I woke up this morning feeling descent.  My mouth still feels so dry and I felt super drained of energy.  I had some liquids first thing in the morning and then a couple hours later was able to actually eat some solid food.  I had very small bites of cottage cheese, yogurt, and cream of wheat with peanut butter.  That helped me a bit to increase my energy.  So felt I was able to do even more walking this morning than the past couple of mornings.  Well, afternoon came and the exact same reflux feeling came back.  I felt more bloated than I had ever felt and knew I just needed to poop.  Finally at 7 o’clock at night after several attempts of different laxatives and suppositories I convinced the Dr to give me an enema.  Which gave me the most relief I had had in several days.  It seemed like I had been walking and walking and walking all around the hospital and it just wasn’t working to get things moving.  

POST-OP DAY 6:  This day is a bit of a blur for some reason.  I just remember feeling like I was making good progress considering but that I still didn’t feel quite right,  Something wasn’t right.  I felt I was forcing drinking throughout the day.  I felt dehydrated.  Just kind of thought this was a normal feeling and moved on with the day.  Ate mac n cheese for the first time and ate a pretty good amount.  Way more than I thought I’d be able to for sure.  

POST-OP DAY 7:  It was difficult getting up this morning (as it is most mornings for me, haha).  But I got up, took a shower, drank some water and walked some laps around the unit.  I ordered food and while I waited I walked some more laps.  This really made my day start off well.  At home before surgery I am so used to getting up and drinking lots of water before doing anything else and this morning I felt like I was actually able to do that.  Drinking a lot of water took a good hour or so, but I was able to hydrate before anything else.  And the rest of the day followed suit.  Ate breakfast, lunch, and dinner in small amounts and was able to drink these protein drinks in between.  I finally felt like I had figured out a little routine that worked for me and incorporated my ‘normal’ life.  This was the first day I felt more myself since surgery and it felt amazing.

POST-OP DAY 8:  Since yesterday went so well I felt it was time to venture out of hospital food and try out a restaurant.  My surgeon’s partner recommended a place called Luke’s lobster.  I’m not a huge lobster person, but I saw on their menu they have Lobster Grilled Cheese which looked amazing.  So for lunch, hubby and I headed out of the hospital to Bethesda to try this place out.  It was a cute little restaurant where you order your food at the counter and they bring it to you.  Which was perfect for my first outing so I didn’t feel pressure to hurry up or anything.  I ate a whole half of that Grilled Cheese!  And I tried a couple of potato chips!  Chewing tons of course.  Never in a million years would I have imagined I would be eating this much a week out of surgery.  I keep thinking it’s too good to be true.  I’ve talked with my dietician and surgeon about it and they both say I’m doing great and doing everything I should be doing.  There was a lot of walking involved with today so I was a bit nervous I was doing too much of that as well but they both confirm as long as I’m feeling good it’s fine and walking is a good thing.  They did warn to not be alarmed if tomorrow or the day after I’m a bit tired.  Which makes total sense.  

POST-OP DAY 9:  I’ve stayed in the lodge here on campus the past 2 nights which has been amazing.  It’s quiet and the bed is much more comfortable than that hot hospital bed.  Slept in a bit today so started my calorie/protein counting a bit later than I had hoped.  But it felt amazing to sleeping in.  Had breakfast in the kitchen here and then enjoyed a protein drink a couple hours later just while hanging out.  Watched a movie and then took a nap which set me back a little too.  But then I was ready to head out on the town for lunch (at 3pm in the afternoon,  haha).  Hubby and I walked about 1.5 miles to a mexican restaurant called Guapos.  While on the walk we were passing a running going the other way and I said “good morning”.  Matt looked at me and said “it’s 3 o’clock in the afternoon” Haha.  We had a good laugh about that.  Anyway, I digress.  At Guapo’s I ordered the steak quesadilla and ate 1/3 of it!  It prob took me 45 mins to eat it, but I got it down.  Then walked back to the lodge where I sit now.  Being outside in the crisp air felt amazing.  

I’m still amazed how much food I’m actually able to enjoy at this point in the game.  I don’t know if the surgery is just becoming more perfected where patients are just doing much better post-op or what. But whatever it is, I am so grateful to be here to enjoy the beautiful weather, food, and people.  I feel I have beat the odds for this nasty cancer just because now we know I will never had to worry about getting it and having to fight it like so many other people have.  #fuckcancer