Missed it by this much

Today was a … challenge. I had an appointment at the wound clinic to have the staples from my incision removed and what not. After the dozen or so staples were removed, the nurse noticed something. Mainly, that one of my staples had been rubbed to the point that it opened up a hole. Yep. A nice little hole that lead straight down to my existing tunnel. So, the tunnel that I’ve been trying to heal, has a second hole to the outside. I will take this opportunity to point out that I didn’t have this second hole in my stomach before I got the wound vac. Last week, I only had one hole. Today I have two. I know that I skipped that day of Medical School, and correct me if I’m wrong, but I don’t think that is how healing is supposed to work. I kind of expected the number of holes to decrease, not increase. If this keeps up, by Valentine’s Day I’ll look like a Tom and Jerry Cartoon.

That’s more than a little …frustrating, when you consider what a royal pain this stinking wound vac is. On the plus side; with a couple of colored scarves tied together I could do a really neat party trick right now. Not much of a plus side I know. I’m into this thing for a bit over a week and I’m worse off than before it started.

I’ve alluded to previously, how much it hurts to have my wound dressing changed in general. The wound vac dressing is all that and more. So much more. It’s a completely exquisite experience that I wouldn’t wish on anyone. Well, Surgical Harpies excluded.  The internals of the Wound Vac get changed every three days. Or, I should say can’t stay in any longer than three days. Whichever you prefer.  How this all is working out should surprise exactly no one at this point.

I got everything changed out on Wednesday, right on schedule. Thursday, I go to the Wound Clinic to have my staples removed. With the location of the staples, and the wound; the wound vac “covering” had to be removed to pull the staples. Once the seal is broken, everything has to be replaced; you can’t just throw new plastic covering on it. Yes. I asked. So, two days in a row I have to go through this. For those of you playing the home game; what’s three days from Thursday? If you said the Sunday before Christmas, you’d be right. The next time I can get to the Wound Clinic or my Home Nurse can get to me is … Tuesday. Wednesday to Tuesday is how many days? More than three… That’s WAAAAAAYYY to long to leave the packing in place. So, I get to have everything replaced on Friday. That’s three days in a row of exquisite pain having the wound vac changed. For the record, Friday to Tuesday is OK in this case. Apparently, Christmas Day doesn’t count. Yes. I asked.

Yeah…

I don’t understand it either at this point. I just don’t understand. So… I go back to what I know:

  • Suffering produces perseverance; perseverance, character, and character, hope. Romans 5:3-5. Suffering: Check. Check. And… Check. Fairly confident I’ve got this covered. Perseverance: Um… Check?  I’m still persevering. Character: I’m most definitely a character from what I’m told. There’s probably a Widget I can add for an online poll and pie chart the results. Check. Hope: This is the one that I’m still working on.
  • Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged for the Lord your God is with you where ever you go. Joshua 2:9.
  • He who began a good work in you will carry it on to completion. Philippians 1:6.

I know these things. I know them in my head; I just need to work on knowing them in my heart. It seems that I’m off by about twelve inches.

Well… This sucks. Literally.

This past week was … something. My wound has been healing very slowly. It drains a lot and the top dressing needs to be changed twice a day, as it will just weep and seep through the bandages and padding. Not only is that (hmm… not just gross) ooky, having a ginormous wad of gauze on my stomach has made wearing anything more than sweatpants extremely uncomfortable to say the least.

Enter the Wound Vacuum. I totally get the idea behind it, it makes sense. Pack the wadding with sponge. Seal the whole thing up. Apply some suction. Not only does that remove the ookiness, but it helps pull the skin and tissue together so that everything can heal. For those of you who aren’t familiar with this wonder piece of medical technology; you’re free to make the same mistake that we did and Google it. I’ll give you a minute to hit YouTube and check out some videos. Take your time.

Isn’t that fantastic? What a modern miracle of science and medicine. Now that we’ve marveled at what a … device this is, there are one or two downsides. These things are STUPID expensive. I mean. Government Acquisition expensive. I half expected to see a little star logo on the bottom next to a Made in Ft. Worth, TX line. See, I never forget who I’m picking on.

KCI (the real manufacturer) doesn’t allow the devices to be sold. They can only be rented. Rented at the tune of $40 per day. If you’re thinking, wow.. that’s a lot of money. I sure hope you have insurance. Um. We do have insurance. We’ve got pretty decent medical insurance through work. That $40 per day is how much we pay for this little darling. Yep. $1,200 per month. After insurance. That means, the total bill for this is, a whole lot more. If that’s not bad enough, these things are tied up in patent suits; companies will buy out other companies and then shut down their competing products.

The price isn’t the only detraction to this marvel. Let me take you through how this works. Instead of shoving a wad of soft, soaked gauze into my wound, a piece of sponge is cut and shoved inside. Not a soft, cushy, nice sponge, but one of those stiff, black, medical sponges. Then it’s all covered up in adhesive plastic. A hose is taped in place. Everything is covered up in adhesive plastic again. That’s when the wound vacuum is turned on and suction is applied. Imagine the exquisite feeling of your insides being pulled all together, at the same time. Yeah, it’s fantastic, but it’s not the best part.

This is the part that I’m really looking forward too. The vacuum helps promote healing, right? Brings the tissue together, so it can grow back. Guess what happens when the sponge needs to get changed? The three rolls of adhesive plastic get pulled off first, along with the first two layers of skin and all of my body hair. Then the sponge gets pulled out. The sponge that has been pulling all of my insides together promoting growth. Tissue that has been promoted to growth into the sponge. This is why I think the wound vacuum was dreamed up by a Surgical Harpy. And, I get to pay for this. Ya for me!

At least I don’t have a 5 lb boat anchor tethered to me that I have to haul around every where I go. Oh. Never mind. Something has to provide suction, and that suctioned goo has to go somewhere. I’m just glad that it comes in such a stylish bag to put over my shoulder. Sigh.

There is something good, though. I don’t have a big wad of gauze shoved in my pants anymore. Ok, typing that, it reads a lot worse. How about, pants almost fit better. I actually managed to wear a pair of jeans for a few hours on Saturday before they hurt too much. As long as this Harpy inspired wunderkind gets my wound healed faster, it’s probably worth it. The sooner my wound is healed, the sooner I can get back to my life.

I’ve got work to get back to, chemo to start, and Gilda to frame for it. Frankly, I’m swamped.

 

Look Out for Yourself

I’ll be the first to tell anyone, I had some amazing nurses and great assistants during my Hospital stay. Their care got me through my stay. I told the patient advocate as much in person, in my customer service survey, and in writing. My Doctors, for the most part, were pretty good. Not nearly as good as my nurses, but not bad. I mean, they’re only doctors after all, right? Now the other part, eh… not so much. They were the Surgical Harpies as I (fondly?) refer to them.

As I’ve alluded to before, after my surgery I ended up with an incision that is roughly 10″ or so long starting just above my belly button. During my time in the hospital, it got infected. Enter the Surgical Harpies. A Surgeon, who we will refer to as Dr. … C and her assistant came in to check it out and make things right.

Making things right included:

  • Taking out some of the staples
  • Opening up a hole roughly the size of a quarter in my abdomen
  • Expressing puss and other nastiness from incision
  • Identifying that from the hole, the wound “tunneled” roughly 4″ up and 1 1/2″ down from the hole. The hole itself was almost an inch deep
  • Then packed the whole thing with gauze

The Harpies flitted away to wherever Harpies go. Hades. It’s Hades if my Greek Mythology knowledge check is correct. If you read that and thought to yourself, that sounds like it really hurt. You’d be wrong. It really, really hurt. On a scale of 1-10, it was a Super Saiyan level of pain there. The part that endeared the Harpies to my heart wasn’t when they ignored my pleas for pain medicine, but when the assistant threw a package of wipes on my chest and told me to “use these to clean yourself up” before they left.

Now, the packing of my wound needed to be changed twice a day. Fortunately, I had a skilled and caring nursing staff that took care of that. Until the Harpies returned a couple of days later. See, they insisted on repacking the wound that my nurse had packed just three hours earlier. While I told them to stop, and begged for my pain medicine, then begged for them to stop so my nurse who was standing right there could give me said medicine; they continued. They pushed on, did a half assed job and finished with a “See, we’re done.” Before galloping off to… Hades I think is what we determined.

At that point, I’ll admit it. I was pissed. I grabbed the phone and tried to call the Patient Advocate. I say tried, but my nurse gave me the belated pain medicine and they hooked me up with some primo stuff. No idea what the street value on it was, but I sure wasn’t seeing straight. To give you an idea of just how angry I was. Normally, the shot of pain medicine I got was enough to take me on a nice long trip to Nap Land. Not today. I was wide awake and angry.

Shortly, after all this went down my Hospitalist came in and I regaled her with the tale of what had happened in the morning. She was mortified and paged the Harpies and the Hospital Patient Advocate. Amazingly, the Surgical Harpies were slow to answer their page. As I told my wife, they were dodging me. It was a good while after lunch before Dr. C showed up.

The part of this that I regret is, some of my coworkers had stopped by. We were having a really good time talking and laughing, just hanging out. When the Harpies decided to grace us with their presence, my friends had to take off. I think my exact words were, “I’m sorry, guys. There is something I have to take care of.”

I chaired the meeting with my Mom, Wife, Day Nurse, Hospitalist, Patient Advocate and Dr. C in attendance. I started off fairly nonchalantly thanking everyone for coming. From the start I stated the reason I asked everyone to attend was so we could “discuss the completely unacceptable way I had been treated as a patient at the hands of Dr. C and her assistant.” When Dr. C started to say something, I cut her off stating that she “misunderstood her role in this meeting.” and that “her input was not required.” I was direct and blunt; channeled my inner inspector when the inspection goes straight down the toilet and the site tries to argue that their complete lack of execution is in some way admirable behavior. I had none of it. I did stipulate that her assistant was not to be allowed into my room again during my stay. Should she come in, I would notify security. Dr. C tried to play the “I’m stupid” card, and say that she didn’t understand what was wrong. So, when I described what happened that morning as examples of unacceptable behavior, the Hospitalist asked my Nurse if she was present for any of this. She confirmed what happened. Now, my wife claims that I went too far when I informed Dr. C that “if it ever happened again, I would snap her finger like a twig.” Here’s the thing. She tried to use the “I didn’t know” defense and I wanted to make sure she understood what “unacceptable behavior” meant, and the consequences of those actions. Hey, I saw Doctor Strange, broken fingers are bad for surgeons. Like, really bad.

I’m not one to advocate violence. In talking with my night nurse that evening, the Surgical Harpies had been mistreating every patient on the floor. No one else called them on it. Somehow in their minds, this was an appropriate way to treat another human being; a person under their care.

Why did I decide of all the things that occurred during my stay, this was something to share? It’s to tell you this. You are your own best advocate. Not your nurse. Not the Patient Advocate. Not even another Doctor. No one else. Only you are the best suited to speak on your behalf. Well, and stop forest fires. If you aren’t going to speak up, then you must be OK with how things are going. I’m sure that if I hadn’t had that direct and blunt conversation, the Surgical Harpies would continue their reign of terror on that floor. If you’re being mistreated, its up to you to say something. You don’t have to go it alone,  but if you desire change … start with the man in the mirror, or woman as the case may be.

Things Not Said

Let’s not think of this as me leaving things out, or trying to conceal or hide anything. Rather, me just taking my time to reveal all the details. Kind of like Burlesque Story Telling. You know… that might make a better title than Things Not Said. Need to think about that one a bit. Don’t feel bad or take it personally, I didn’t even get the full story when all of this went down. It also took a fair bit of time to get all of the information from all of the various doctors that I’ve been dealing with. Enough of that for now.

My Surgeon removed the mass that was causing my blockage, as well as 14″ of my colon. I took to calling the mass Seamus. Looking back, I really should have named it Gandalf. I’ve  the name Kuato suggested as well. Since it’s my mass, Seamus will do. Well, apparently Seamus took a parting shot at me, as if starving me half to death wasn’t enough. Based on the pathology repoort, Seamus was malignant.

That wasn’t the result that we were looking for. As a matter of fact, we were pretty optimistic that everything was OK and that Seamus wasn’t the mean drunk that he ended up being. I mean, I knew I wasn’t pregnant. Crisis adverted. Ok, I was pretty sure I wasn’t pregnant. My daily bloodwork showed that my white blood cell count was normal. A whole host of other things that we were keeping an eye out for all looked fine.

We kinda figured that if things weren’t OK the Surgical Residents that saw me every morning, the Hospitalist that stopped by in the afternoon, the Surgical Harpies (I mean other members of the Surgical practice) that stopped by every afternoon; I mean, someone would have mentioned it, right? “So, let’s take a look at your staples today. How’s your pain? How are you eating? Do you feel nauseous or like you need to throw up? You have cancer. Be sure to get up and walk around today, that will help your incision to heal.”

Well, my surgeon took a couple of days of leave after he stitched me back up. Now, I don’t begrudge him a bit. I really like my surgeon and am appreciative of the work that he did, the Surgical Harpies, not so much. While he was on leave, the other docs that saw me on a daily basis all thought that one of the others had that conversation with me. “Which way did he go? Which way did who go?” Pretty much how that went down. So, after my wife and I pestered for the results of the biopsy for a few days we got the news.

That took a little bit to sink in.

There was good news, and the Hospitalist that broke the news to us was very positive. My margins were clear. At 14″ the margin should have been clear for crying out loud. A dozen lymph nodes were removed and looked at; they were clear as well. No history of Colon Cancer in my family. I’m young (relatively) for Colon Cancer; it’s typically found in patients that are in their 50s and older. Ton of things going my way.

So, it’s with all of these things going through my noggin that we met with the Oncologist. We were taken a little bit back when she said that she had appointments book for me already to start Chemotherapy. How it goes down is that while I have some things that are going my way; given my young age and some other things I’m at a high risk of reoccurrence of Cancer. I honestly appreciate the Oncologist being aggressive. I’m just not thrilled with six months of chemo, twice a month. Oh yeah, that’s once my wound gets all healed. Here’s the kicker. I’m doing chemo, to kill off any loose cancer cells that may have gotten dislodged or broken off and are floating around in my blood stream. To counter this threat, chemo needs to be started within three months of surgery. So, I’m roughly a month out of surgery already (my clock is ticking like this). After three months, anything floating around will find a place to hang out and future hilarity can ensure. Now, that is assuming that I can tolerate/finish 6 months of chemo. One of the side effects of the drugs is neuropathy. One of the side effects of my diabetes is neuropathy. Wait, huh? The chemo is going to raise my chances of developing neuropathy, as well as the usual cast of characters: loss of appetite (not again), thinning hair, etc.

It’s a bit of a race at this point. Will my wound heal in time for me to start chemo? Are there any cancer cells floating around my body looking for a home, maybe just a couch to crash on for a few months? Tune in next week to find out if our hero can defeat Seamus and the Legion of Malignant Cells.

Hilarity Ensues

So when I say “hilarity ensued”, it did on a couple of occasions. It started all the way at the beginning of the story when my wife took me to Urgent Care. See, I called the Nurse line for our Health Insurance and described my symptoms, what I did to attempt to relieve my pain, etc. The Nurse told us to go to Urgent Care and that we had the option of going to a location in Fredericksburg or Woodbridge. Now, it’s getting late at night. Fred is a good bit closer to my home that Woodbridge, so that’s where we head.

After being in Urgent Care for a couple of hours, the Doc orders up a CT Scan. Which is great. Except for the fact that the Fredericksburg facility doesn’t have the ability to conduct a CT Scan. The closest facility that can is… Guess where. Yep. Woodbridge. Thankfully, Fredericksburg had the barium prep in the pharmacy. You may be asking yourself why they had the prep but no CT; I asked myself that same question as well. Heck, I even asked the Nurse and she had no idea.

Now, you may be thinking to yourself, “Man, that’s really unfortunate but I’m not sure I would describe it as hilarity ensuing.” That Friday evening when things (OK me) stopped; I did the same exact same thing. Called the Nurse line. Informed them of what is going on. They then gave me an option of what ER to go to; Stafford Hospital or Virginia Hospital Center. Stafford Hospital is a ton closer to where we live, so that’s where we chose. We hit the ER, get checked in, go through triage and make our way back to a room. Fortunately, the ER wasn’t THAT busy, but it takes a little bit to run the gauntlet. ER Doc comes in. Guess what facilities Stafford Hospital doesn’t have? If you said an Abdominal Surgical Unit, you win! Do I even need to write where the closest Hospital is that has an Abdominal Surgical Unit is located? It’s Virginia Hospital Center (VHC), if you didn’t see where this is going.

To really appreciate this situation, you have to be familiar with Northern Virginia and the traffic that we endure out here. While the distance driving isn’t all that much, the traffic. You’re talking an hour, maybe two hours from Stafford where I live to Arlington where VHC is located. Oh, and that amount of time. It varies depending on when you leave and what direction you are going (North or South).

Moral of this story is “Don’t allow me to pick a medical facility in an emergency.”

So, yeah. At least I got to ride in an ambulance; never done that before. Truth in lending here. I slept most of the ride in the ambulance. I was tired by that point in the morning and had already received some pretty nice drugs for the pain I was having. While it was a new experience, it was pretty much wasted on me.

No. That’s not true. Not true at all. The experience wasn’t wasted one bit. I spent the entire ambulance ride from Stafford to Arlington praying. I prayed and left this entire “thing”, for lack of a better word, at God’s feet. Whatever was going on, and whatever the outcome would be; I left up to God’s Will. There were two verses that went through my head during that ride. The first was Joshua 1:9 “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discourage, for the Lord your God is with you wherever you go.” The second was Joshua 24:15 “… But as for me and my household, we will serve the Lord.” Those two verses got me through that ambulance ride, as well as through the first few days in the hospital.

Once Upon a Time

Every journey has a beginning. I guess this is mine.

I spent most of Halloween with abdominal pain. Gutted through the day and Trick or Treating, because that’s just what we do. I took November 1st off of work, hoping this was something that I could sleep off, or it was just something that I ate. My wife ended up taking me to urgent care and hilarity ensued. Around midnight, I found out via CT scan that I had a partial blockage of my colon and an appointment with the Gastero.

My appointment with the Gastero doesn’t yield much, except a Colonoscopy on Monday and not one, but two gallons of prep to drink over the weekend. The thought being, drink as much of the first gallon that I can tolerate and it might loosen things up and relieve some of my pain. Sunday, drink the second gallon and get ready for my close ups. If you’ve ever had a Colonoscopy, you know what a ridiculously daunting task this is. Two gallons of that nonsense. I’ve reported my Gastero to the Hague, as this was a crime against humanity, and I’m still waiting for them to call me back.

Then Friday happened. I guess it would be more accurate to say…didn’t happen. That evening, my partial blockage turned into a full blockage and a trip to the ER. (No Gas. No Ammo, Sergeant!) Hilarity ensues once more and I’m admitted to the hospital. A potential of Monday (maybe Tuesday) surgery, means no eating or drinking for me. Fortunately, my blockage allows things to pass again. I say I’m fortunate, because I end up getting a partial Colonoscopy at the hospital. This means my surgery gets postponed until Thursday. Armed with some CT scans and my pictures, the surgeon can see what he’s getting into and it’s not a blind emergency surgery.

I’ll take a short break from the story to point something out. Surgery got postponed from Tuesday until Thursday. I last ate something on Friday November 3rd. Surgery is Thursday November 9th. Six days. No food. This would kinda become a theme during my stay, “No Food or Drink”.

Surgery goes great. I end up getting 14″ of my Colon removed, which seems like a lot. In talking with my Mom and Wife the surgeon is absolutely giddy. Apparently, he’s never seen anyone with as long a Large Intestine as what I had. I live to serve.

I spend the next couple of days recovering from surgery with enough tubes and lines coming into and out of me; I feel like the world’s most inefficient IV filter. After about 2 days, all the lines come out, to include the NGT that is pumping out the contents of my stomach to take the pressure off of my small intestines so they can wake up. Which means, you guessed it, no food. Once the NGT comes out I’m ecstatic to order from my … clear liquids only menu. Great. instant beef and chicken broth, Jello, and an Italian ice for dessert.

Apparently, not all of my intestines got the message it was time to get back to work or a segment just wanted to sleep in a little bit longer. After enjoying two days of delicacies like Orange and Yellow Jello, the NGT goes back in. In truth, I enjoyed two meals of clear foods. I spend the next few days in misery. They end up putting in a PIC or Central IV so they can shove a pre-mixed bag of food straight into me that looks kinda like a vanilla milk shake, but is nowhere near as satisfying.

This goes on until about November 20th. At that point, my NGT is capped and the nurses start measuring how much fluid is being generated for around 16 hours. The magic number is 300 mL. If it’s under 300mL and I’m up for it, the NGT can come back out. 65mL later the NGT comes out and I get to sample clear foods for breakfast. After a meal or two, I get progressed to pudding. Pudding then takes me to a low residue diet on 21 November. My choice? A cheese burger, fries and pudding. Come on.

For those of you playing the home game, I went from November 9th until November 21st without eating. Yeah. I lost about 30lbs in the Hospital. Effective, but not a method I’d recommend.

Nervously, I get discharged on 22 November; the day before Thanksgiving. I say nervously, because we still had a lot of questions that were not completely answered. Due to some complications in the Hospital, I also have a 12″ wound in my stomach from the surgery that is healing really slowly.