Pretty Long Day

HB and I left for the hospital at 9 yesterday morning.  I should back up, at 7:30 or 8:00, HB actually made eggs on the stove, and they turned out great.  I'm really proud of her.  She can make scrambled eggs for me any time now.  My first appointment was with the nutritionist at 11.  Luckily, we could park in the cancer center parking.  That garage is far smaller, and you can only park there if you have an appointment in the cancer center, so you can usually find a decent spot without driving around for 20 minutes.

The nutritionist gave me a lot of helpful advice, and some products to try.  One of them was Carnation Instant Breakfast VHC (very high calorie).  These little guys pack an awesome 540 calories into 8 oz.  I'm excited to try them, and I can get them at cost from the pharmacy there.  My normal ensures are only 250 or 350 calories per 8 oz.  She also gave me a clinical strength ensure to try, these are the standard 350 calories, but include some specific ingredients to help restore muscle mass, which I could definitely use.

The nutritionist also told me that I should be eating between 2700 and 3000 calories a day, and around 87 grams of protein.  That seems like so much food to me, but she gave me some helpful hints on how I can boost the calorie and protein count of things.  One suggestion is to get some dry milk and mix it in with my whole milk.  I'm going to try it.  It practically doubles the calories and protein.  She also gave me a cookbook called Eating Through Cancer which I'm going to look through for some ideas.

After nutrition, it was off to get some blood drawn.  HB wisely suggested that we attempt to get my paracentesis time bumped up, because it was scheduled unrealistically tight between two other appointments that are always running pretty behind.  I talked to the scheduler, and she was like, of course we'll squeeze you in, we love you down here.  That makes me feel pretty good.  I like to be the ideal patient, the one that doctors and nurses want to work with.

The paracentesis went ok.  Dr. Dillman, who is awesome, and someone I would probably hang out with if I knew him differently, and has done this for me a few times before, was training a student in the procedure.  They had a hard time getting any fluid to come out at first, because he kept sucking up my bowel.  A little more about this procedure:  They look at my abdomen with an ultrasound to find the biggest pocket of fluid.  On the ultrasound, you see the layer of skin, a big black void area (that's the fluid), and some stuff that kind of looks like brains near the bottom of the screen.  The brain-looking-stuff is your bowels.  As the fluid is removed, the bowels will float towards the skin layer, because you're laying on your back, and your bowels have air in them.  The suction from the vacuum bottle can sometimes suck the floating bowel into the tube doing the draining.  It's not exactly painful, but it isn't the most pleasant thing either.  Imagine someone pinching a tiny part of your intestines, and you've got pretty much how it feels.  The biggest issue with this, is not the pain when it is happening, but the cramping that this causes down the road.  Believe it or not, your bowels don't like to get sucked up into a tiny straw.

Off to oncology, where HB and I met with Dr. Khan's PA, Bridgitte.  She's as awesome as Dr. Khan, which is great.  We did find out that Dr. Khan will be leaving in May, so I will get shuffled to another GI Oncologist in the clinic.  I hope that I get as lucky as I did with Dr. Khan.  The results of my CT scan show no changes.  NO CHANGES!  That's amazing news as far as I'm concerned.  In the 3 months, without much in the was of treatment, I had no changes.  My liver is functioning well within the normal range, surprisingly so, and there's only one enzyme that was elevated.  I am ecstatic.  I'm hopeful that continued treatments will start shrinking some of the masses, but only time will tell.  I don't actually see my oncologist again for another few months, so that is encouraging as well.

We met with the social worker, Chris, after oncology.  She's helping me get some funding to pay for the sutent, the one that costs $8500 a month.  Hopefully something comes through.  She also will be doing some counseling with me, which we started yesterday.  We'll see how it goes, as yesterday I was not in great shape to sit in more uncomfortable chairs.  At this point in the day, HB and I had eaten breakfast (the awesome eggs she made at 8), and we're sitting in the social worker's office as the clock is hitting 4 pm.  We were both famished, and luckily I had an ensure in my bag.  I need to pay attention to my appointment schedules better and make sure I give myself breaks.

The only thing left in the day was getting my octreotide injections, which are always my favorite.  We waited for nearly an hour to be seen, and then I was taken back to the injection room (which sounds like something you'd find in a dungeon) where I was greeted by the grumpiest looking nurse you can imagine.  Unfortunately for her, she only looks grumpy, and was a sweetheart.  She gave me my injections, and much to my surprise, they didn't really hurt.  I made sure to tell her how appreciative I was, and that I thought she was the best nurse at giving shots, which made her grin a lot.  Before I went into the room I was feeling pretty crappy, and I think a lot of it was because I was dreading these injections.  After getting them done so well, I came out feeling a lot better.  It's amazing what our brains can do to our bodies when we get all worked up about things.

HB drove me home, and we stopped at a KFC/Taco Bell for some much needed sustenance.  I've been craving fried chicken for a while, and she loves rice and beans and tortillas, so it worked out well.  It was a quick trip home in the rain, and when we got back, we had "Annie!" waiting for us from Netflix.  Overall, it was a long, but pretty good day.