Tuesday, August 31, 2010

Seven Weeks

I saw my doctor on Monday. As in, my GP or PCP if you're in the insurance business. The family doctor, you know? Believe it or not, he actually had no idea about my surgery. So when he walked in scanning my chart and commented that I had been in the hospital and asked why, I got a somewhat horrified look after telling him I had a total gastrectomy.
"Wh-wh-whu-wut? Why? Explain."
Then I go on to describe the course of events of the last ten months in great but succinct medical detail. He was really taken aback but once I got him up to date, he just requested a copy of the Operation Report so he has an idea of the current anatomy of my abdominal cavity. I'll be honest, I was just there for some B12.

B12 is a necessary vitamin that can only be absorbed in the stomach. If, like myself, you don't happen to have one, then you have to get your supplement in liquid form delivered through a needle. I'm not a big fan of needles. And even after being hospitalized for 10 days with, oh probably at least 40 needles being stuck in me during that time, I am no more tolerant of them today as I was when I was five years old. So the issue is how to administer the monthly shot. The nurse gave me a dose there in the office and then the doctor wrote a prescription for the next year. My husband had earlier expressed an almost sinister willingness to give me the shot so if it comes down to it, I can have him do it. But I realized that I could just have my nieces or one of my several friends employed in the nursing profession give me the shot as well.

Then Tuesday I met with my surgeon again. She is pleased with my progress and says I look great. I requested a copy of the Op report for my doctor. She printed a copy for me and said she would send one along to him. It's really fascinating reading that. I wish I had just asked her to email me a copy of it so I could copy and paste it here! But I'll type up a brief excerpt because it is my favorite part:

"The plan was to perform and end-to-side esophagojejunostomy using a circular stapler, similar to the one used for bariatric surgery. Unfortunately, multiple attempts to place the anvil down the esophagus were unsuccessful. The anvil kept hanging up just distal to the cervical esophagus and despite multiple attempts and repositioning, this anvil could not be passed. Therefore, the decision was made to proceed with extending the incision and performing an open hand-sewn anastomosis."

Hahahaha remember the stapler getting stuck in my throat? There it is. It also explains why my belly looks like I lost a fight with Edward Scissorhands. No matter. I think right now, I'm doing better than I expected I would be at two months. So I'm thankful for that but also still realize that regression is always a possibility. And I can still find myself feeling really awful at times. Like when I eat Blueberry Pie too fast or put a lot of Maple Syrup on my Belgian Waffle!

Tuesday, August 24, 2010

The Weight of it All

I bought a scale the other day. I'm not a scale person. It's been over ten years since I owned one. Probably because I knew I was carrying a lot of extra weight and didn't want to be reminded of that fact. Who needs a scale to do what a mirror can do? Women are very sensitive about the weight they gain during pregnancy, especially when their "baby" is 12 years old.

The problem I will start having in the next few months and continuing for years, forever maybe, is that I don't want to end up losing too much weight. I know, right, it seems almost sickening. While most people struggle to shed pounds, I will have to be vigilant that I don't lose too many. Some for the first time may be finally understanding that the title "Latest Skinny" has another meaning other than news update.

My surgeon said that people lose 20-30 pounds after this surgery and any more than that would be dangerous as patients become underweight. I wanted to gently remind her that I was about 50 pounds overweight pre-surgery and I wouldn't be starting to worry unless 60 or more pounds are dropped.

At my first appointment after surgery, I was weighed and had lost 18 pounds in three weeks. That's not too bad. And for right now I'm hovering in that same spot, which is good. Too rapid of weight loss brings a host of other medical complications with it that I would like no part of. I've been told that the most rapid loss won't occur until a few months in. I'm unclear as to why this is and have been meaning to study up on it. My best guess is that at first the body will hoard the fat and compensate for the lack of calories and nutrients being ingested by simply making the body very tired and unable to get out of bed, especially when there's a "Top Chef" marathon on TV. But then after a while it just gives up and realizes that nothing is going to change so it had better start burning off the stored fuel in order to keep functioning. But that's just a guess. Some of my nurse or medical professional friends may be able to refute or deny this.

The other side of the equation is exercise. I had been dabbling in yoga for several years but had never maintained a regular practice. Even still I had somewhat of a routine of a few stretches I would do before getting out of bed most days. I realized one recent morning that I haven't been doing them and my hamstrings are screaming.

My biggest fear with the weight loss is that as my body begins to cannibalize itself for fuel, it will start taking the muscle first and not the fat. So I need to start some simple stretching and weight lifting to save my muscles from complete atrophy. But of course, for any kind of physical activity, I need to be getting enough appropriate nutrients. Again a challenge. It's hard to do any kind of exercise, like stretching, walking or laundry, without enough energy to sustain oneself.

Then there's the abs. My abs are totally ripped. Well, actually, they've been sliced by a scalpel. So at least I can say they are "cut," right? I think they cut along the connective tissue but I'm not sure. In any case, they have to get at the organs underneath the muscles somehow, right? I've been told it can take up to a year for these muscles to heal completely; the specifics are on my list of questions to ask the surgeon at my next appointment. You know all that "engage your core" you've been hearing in pilates class for the last 10 years? Yeah, I can't do any of that. And no heavy lifting either. I'll run the risk of a hernia or even permanent damage. And I don't want to jeopardize my future as an abdominal model.

I get on this scale almost every day. I'm pretty sure it's broken because it's cheap and it doesn't function the same way it did when I first got it out of the box. Right now I'm holding pretty steady with a fluctuation of +/- 3 pounds. It's the time when I get on one day and find myself down five pounds from the day before, then the next day another three and the next day another four, that's when I'll be in trouble. That's the day when the old me, who would be jumping for joy, will be tempered by the new me, who will be very concerned and start consulting medical texts and scouring the shelves of GNC for some miracle product that will help me gain weight. And the old me will want to smack the new me. But that's just how it goes.

Thursday, August 12, 2010

One month down!

I know full well that there is no normal. There are no true milestones to look towards. There is no way to compare my progress to anyone else's to see how my adaptability and recovery measure up to others who have had this surgery. But it doesn't stop me from doing just that.

One young man returned to his office job on a part time basis after only three weeks while I've heard of others who are considered permanently disabled and unable to work; so I guess I'm doing okay. One woman jumped back in to her usual workouts on an elliptical trainer and strength training after only one month, while others are barely able to consume enough calories to muster the energy to walk to the refrigerator to get something to eat, so I guess I'm somewhere around average or normal.

I'm contantly re-reading the abandoned "gastrectomy" blogs of those who came before to see what I should be doing, what I should be capable of at any particular point in time. Laps around the whole floor the day after surgery? I only ever did half a lap in the hospital and that was a full week post-op. Well, it must have been a tiny hospital those others were in, right? What about that goo that I may find myself gagging up? That happened to him at five weeks and her at about two months. When will it happen to me, if it even does?!

I realize that the body adapting to not having a major organ is no competition, but still, I'd like to at least place. At least be in the middle. I guess for now I am. Sometimes on the lower end of middle, or "less adjusted" if you will. I realize things could be better. As long as I don't start to think they should be better. And I'm thankful every day that they are not worse. Because things can be a whole lot worse!

I took a drive on Friday with my son; my first excursion behind the wheel for a little over a month. At my appointment on the 3rd of August, my surgeon did not give me clearance to drive. And that was fine because I didn't feel up to it at all. She said to just make sure I felt okay, wasn't nauseous or taking pain meeds, duh, and that I could turn around okay and perform all of the functions a driver does without feeling uncomfortable before I tried to drive.

I spent a large part of the day listening to the township crew resurface our road and then listening to the dogs bark at the guys when they were right out front. As early evening approached, I decided to take my son out for some food and ended up running into town and getting some pizza after stopping at the bank. It was a nice, short trip that actually did tire me a bit; so I had to rest when I got home.

So that's another milestone I have accomplished. And I did it right around the same time my niece took her first drive, so I'm right on target. Comparatively speaking!

Sunday, August 8, 2010

Craving

Let's just forget about last week, okay? Several days of me feeling just awful and thinking it would never end. It's nice to have come out of that. But eating and drinking continue to be a struggle. I have to make sure I'm getting enough nutrients and a good balance as well. Mostly I need protein. Soon I'll have to do a full nutritional analysis of my diet and adjust everything accordingly. After the past few days, I'm happy to simply ingest anything at all.

One thing that I've read and heard time and again is that foods that work one day, may not then next. I'm starting to discover the reality of that. One thing that I started early on is those Carnation Instant Breakfast packets. They were awesome and really packed a lot of nutrients into 8 ounces of liquid. Plus since it is liquid, I feel like I can take less time between the eating and drinking when that is the eating part.

I figured I wouldn't be able to drink the whole glass at once, but on the first day, the first half went down so easily and quickly that I finished the whole 8 oz. Then every day I had it, which was most, I would drink the whole glass in one sitting! Now don't get me wrong, one sitting would take 45 minutes to an hour! But it seems now, I just can't take them, they make me feel awful. Before I abandon them for a while, I'm gonna cut back to 4oz at a time.

My general overall discovery of the past few days is that I have been eating too much at a time, that being about half as much as normal; now I have to eat even less. I realized I have to be militant with myself as well. I've taken to setting a timer as soon as I am finished eating something, say, four crackers with peanut butter and banana slices or drinking 4 ounces of Vitamin Water/water mix. So that as soon as 30 minutes elapse, I'm ingesting the next thing. What I've realized is that I need to start making things to eat before the timer goes off, because that's when I should be eating.

So really the majority of my day is spent preparing things to consume and then actually consuming them. And these seem to be issues that only make sense to those who have to deal with them. Reading about and hearing people discuss these things previously left me skeptical. Does one really have to remember to eat and drink? Do you really spend ALL DAY consumed with the trivialities of eating and drinking? Can this actually make a person want to pull their hair out?

Well now I know. Yes. Yes. And OMG YES!

I've always been into cooking shows and Food Network, Top Chef and stuff like that. Now I have a love/hate relationship with all that. On one hand, I'm still an aspiring "foodie" but at the same time, right now there's not a lot I can eat; either by volume or from a varietal perspective. So sometimes it's tough to watch.

Friday I woke from my nap craving a particular sandwich. I wasn't really sure but I envisioned something like an Italian Hoagie only more like a grinder and without the lettuce. Then, going to sleep last night, I was watching that Diners, Drive-Ins and Dives show. Ordinarily, the food on that show is just slightly on the wrong side of unhealthy for my tastes, but I was loving the items featured on this episode. I started analyzing the ingredients to see if they would be okay to eat and then plotting as to how I could get my hands on something close to it and how far would I have to travel and how soon could I go. Like a crazy person. "Someday . . . sooooomeday!"

Well yesterday, we got take-out from a pizza shop and Dan ordered me an Italian Special grinder with no lettuce. Aside from the fact I was drinking when he brought it home and I had to finish the glass (20 minutes) and then wait for that to settle through (30 minutes), it simply didn't unfold the way I had envisioned it.

Dan got me a small one which was still way bigger than I can eat in one sitting. I went to cut a reasonably sized piece off, so I cut one of the halves in half, right? Well as I was cutting it, I realized the roll, while perfect for this sandwich, was going to be too hard for me to chew up properly and I had to separate the sandwich. Next I remembered all the sausagy meats on an Italian sandwich. I'm still avoiding this kind of food as there's "too much going on" in sausage and I need more time before I attempt it. So I removed the pepperoni and anything else that appeared sausagy. I was left with a little pile of basically ham/capicolla with melted cheese and a tiny bit of sliced red onion and tomato. Which was fine and I cut it into tiny bites and chewed them well and everything went down well, no problems afterwards. But . . . It just didn't satisfy that craving I had earlier.

I think what I am missing isn't any kind of food itself but simply the manner in which we eat. When you think of a hoagie or a cheesesteak, you think of holding your food in your hand and chomping savory bites, nom-nom-nom. Cutting a pile of ham with a knife and fork and then taking dainty bites just isn't the same!

Someday . . . sooooooomeday, I will nosh on a cheesesteak. Well, maybe half a cheesesteak. I will hold it in my hand, not cut it into little bites. It will be a pizza steak with mushrooms AND onions. And extra cheese. And I will be able to take a bite out of it. Roll and everything!

Wednesday, August 4, 2010

First Post Op Appointment with Surgeon

Yesterday I saw Dr. C. She was pleased with how the incisions are healed and took the steri-strips off of the smaller ones. I told her just to leave the big one because I was paranoid that ripping that big long one off, would open the wound, even though I know it won't. I guess this is a good place to explain all the incisions and holes that were made in my belly since I haven't done that previously.

We had decided to do the surgery laproscopically, so there would be a few small incisions rather than one big one and I also should expect a shorter recovery time. I told her I was fine with that as long as they could get everything out that way. She said she was pretty sure they could but set the surgery up to be prepared to go in the traditional way if there were any complications. She also wanted to try these new staples they have to close the anastomosis, and I told her I was game for that too.

As it turned out, she was able to perform the surgery laproscopically and get everything out that she needed to. The problem came when they went to staple the anastomosis, the new connection between my esophagus and intestine. It turns out they couldn't fit the stapler down my throat to do it from the inside. It's hard not to picture these doctors with a standard office Swingline trying to get it down my throat. I can only imagine that it's smaller, like those mini staplers you get with desk sets that never work.

So they ended up doing a standard incision anyway (from sternum to navel) just to make the new connection. So yes, my abdomen will be a mess of scars, from all that. Not to mention the holes for the feeding tube and the drain tube that was in. I'm not really concerned about it as my bikini modeling days are long over!

Dr C. told me that while it might be hard to hear, everything I'm feeling is completely normal. Yes it stinks and it's awful but it's normal. So I'm thankful that there's nothing abnormal that I'm feeling because that would mean something is terribly wrong!

Pity Party - Don't Buy Into It! I Just Need To Vent...

Pardon the slowdown with the posts. I've realized that this will be a lot harder and take a lot longer than I originally thought. I asked my niece the other day how long it takes before I don't feel like total crap every waking moment. She hastily replied "six months." I wanted to cry. I think I did cry. But that seems to be the norm, four to six months before there are breakthroughs that allow one to feel anything close to normal.

I don't need to go into the details. It's hard for some to believe that trying to get enough to eat and also drink in one day is actually a struggle worthy of breakdowns and panic attacks. Not to mention the pain and nausea that eating and drinking cause. Plus, I need to remain upright for up to 30 minutes after eating or drinking anything. When I most want to just lay down and relax, I have to be sitting up or even walking around!

And I'm unable to drink and eat at the same time. At first, it's recommended to let up to an hour to pass between the two. (I'm trying to whittle that down to 30 minutes). Which is difficult when you are told to eat every hour and a half to two hours, it takes 30-45 minutes to eat, and you have to squeeze in fluids with almost an hour on either side between those frequent mini meals. If you do the math, you will clearly see that it is IMPOSSIBLE to work that schedule, and I'm often falling behind well before noon.

I'm most concerned about hydration. I was keeping a 64 oz container of water in the fridge to measure how much I had been drinking and was doing pretty well for like the first week. Now water seems to be giving me problems.

I'm the kind of person who would chug water, every morning, every evening, the middle of the night. I keep these frosty mugs in the freezer and would pull one of them out several times a day, fill them up two, maybe three times and chug glorious life-giving water. Well those days are over. Not only do I have to take little sips (I'm almost up to half a gulp though!), but water actually makes me feel I'll. I though it was the weirdest thing until my niece concurred that she couldn't drink straight water either.

So now I am attempting adding Crystal Light powder to my water to make it more palatable and go down better. I attempted Gatorade but I don't think it agreed with me. Yesterday I started some Vitamin Water and that didn't hurt as bas as Gatorade. The only thing I've found that works ok and actually eases any nausea/I'll feeling is Ginger Beer. No, not Ginger ale, that would be too easy, and cost efficient. It's this all natural Jamaican style beverage. And oh yeah, I have to open the bottle well in advance and then stir it in a glass until all the bubbles go away.

Usually the saying goes "No News is Good News" right? Unfortunately in my case the opposite is true. But I realize that most of you are reading this blog to keep track of my progress and I don't want to be a Nervous Nelly or a Debby Downer. I'd rather focus on the triumphs and successes. They will just be few and far between and this process of recovery will take much longer than I originally thought.