Round Two – FIGHT!

Mistakes were made. I underestimated my opponent; didn’t respect what he was capable of and got sucker punched. That’s on me. I didn’t take my last chemo appointment seriously.

Image result for mortal kombat subzero round 2

I felt pretty good when I left. Little tired, but not bad. I went into work the next day. Didn’t think anything of anything. Slept like a rock Tuesday night. Slept like a rock well into Wednesday. Most of Wednesday to be honest. Then the nausea hit.

Fortunately, I think we’ve learned some lessons. I need to keep up on the drugs that they give me. You know, for nausea. I’ve been eating ginger everything. So much so, I think my hair is turning red. At the very least I’m starting to develop a hankering for human souls.

This time, I got the chair in the infusion center that faces the door. I get to see everyone that comes in or leaves. Most importantly, I’m either the first or last thing they see.

It’s kinda like this. Who am I kidding? It’s exactly like this. G.R.owl.

Round Two just started. How it’s going to end is a different story. I’ve got my drugs. Ginger out the yin yang. I’m going to take things a bit slower this week than I did last time. Remembered to shave; sheared would probably be more accurate. They taste like chicken, BTW. Human souls that is.

Hey Girl. Want to do some chemo?

One Down

Finished my first day of chemotherapy. I’m scheduled for six months of chemo, twice a month. So that leaves me with 11 more treatments. I wanted to share a couple of random thoughts I had in no particular order.

  1. There are a lot of old, sick people there. Not sure where the young, healthy people get chemo, but it’s not here. Maybe I need different insurance.
  2. Aaaaaaah…Kelly Clarkson!
  3. My nurse was decked out like he was working in an Ebola ward, dancing on used needles, while handling my IV bags. My nurse is afraid he might get sick handling the stuff he’s about to stick in my IV and he’s here dressed like he’s fixing a Polonium sandwich for a friend of Vladimir Putin’s. Something isn’t quite right here.
  4. There’s going to be some discomfort when they remove this.
  5. I had a cheese burger for lunch, instead of a deli sandwich. I heard that too much deli meat can cause cancer. Good thing I didn’t spend my formative years working at Subway. Or eating my weight in sub sandwiches. That could have some serious repercussions when I get older.
  6. That was probably the chemo brain typing.
  7. My chemo has three pages full of side effects. Not a single decent super power among them. I’m now susceptible to cold, but I don’t get even a garbage mutant ability like Jubilee to make up for it.
  8. I asked for a drink. I got a room temperature Diet Coke. Forty-five seconds after being shown the stocked fridge of drinks. Warm. Diet. Coke. Because of a side effect from a drug I was getting three hours later.
  9. Nope.
  10. I took a change of clothes, but ended up forgetting my sneakers. Bad news: cowboy boots don’t EXACTLY go with sweatpants. Good news: I really am 6’6″ tall in heels. All these years I was joking after all.
  11. One ice cube in a glass of room temperature water is three too many. Sigh.
  12. I don’t glow in the dark. Not even a little.
  13. I numbered the list of thoughts that were in “no particular order”. The sad part, is that I didn’t realize it until just now.
  14. If I say something inappropriate now, I get to blame it on “Chemo Brain”.
  • Paul wrote in 2 Corinthians 12 that God allowed him to have a thorn in his flesh. Three times, he prayed that God take it away, and each time God said “naw, its good where it is.” I was thinking that I could use a little smaller thorn in my side. Instead. Maybe, I just need my faith to grow into my thorn.

Crossing the Jordan

Had some great news from my Doc appointment today. My wound has healed.

Truth in lending. My wound was healed on Monday, but I wanted confirmation before I got too excited. Monday when we changed out the ribbon packing my wound we were a little surprised. The ribbon, roughly four inches, had been pushed out of the tunnel and was coiled up nicely at the bottom of my “third belly button”. Yeah, I have three belly buttons now. Miracle of modern medicine. There’s also a nice set of railroad track looking scars. Gonna forgo the pic on this one. You’re welcome

We were shocked; shouldn’t have been, but we were. Our small group prayed for healing for my wound Friday night, and I got it. The tunnel went from 4.5 cm to 0.2 cm in three days. If that’s not God’s healing I don’t know what is. What I know is that God hears Ann’s prayers. There is no doubt in my mind of that.

Now it’s a bit of a mad dash:

  1. Appointment with my Surgeon on Friday
  2. Get a hold of the Oncologist and get chemo scheduled
  3. Bloodwork for my CAT Scan, Thursday
  4. CAT scan Sunday afternoon. Yes. Super Bowl Sunday. Probably why they had an opening. Let’s face it, I don’t watch the 38 hours of pre-game anyways.
  5. My country’s 500th anniversary to plan
  6. More bloodwork 48 hours before I start chemo (see #2)
  7. Probably something else I forgot

I’m at my Jordan river and I’ll admit I’m scared. I’ve spent almost three months recovering from surgery waiting to get moving. I’m moving. Look. It’s not 40 years of wilderness, I get that. It sure felt that way at times. All I have to do now is cross the river and fight my battles. God promised Israel victories, but they still had hard work to do.

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Joshua took 12 stones from the River and set them up as a reminder of what God had done, in the crossing (Joshua 4:1-9). With that in mind, I’m happy with my three belly buttons. There could have been more…

Small Word

My job doesn’t offer disability if you are sick, injured, recovering from surgery or what not. You have sick leave and vacation time that you use. After that, you can apply to be put into a Leave Donor program. What happens with the Leave Donor program is that folks can “give” you their vacation time that you can use. That’s what I ended up having to do. I used up all of my accrued sick and vacation leave and threw myself on the mercy of my peers for donated leave.

I got some news this week that completely humbled me. Three days after the request went out, I had over 300 hours of leave donated to me to use for my recovery. A touch over seven and a half weeks. My co-workers donated 305 hours that they could have spent with their families, to me. That’s incredible. Obviously, I’m thankful. Thank you just seems such a small word to say, but it’s all I have.

Your generosity leaves me completely humbled. Thank you.

 

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.