Hot Friday

Happy Black Friday, everyone! Thankfully I’ve learned over the years to do my Christmas shopping months early, so I haven’t needed to buy anything, but it’s still nice to have a day to sit around and relax with the family.

Or at least it would be, if I hadn’t woken up feeling flushed and exhausted. From the moment I woke up today, all I wanted was cold drinks. The coldest drinks. Powerade, water, soda, (mostly soda); I just needed to drink as much as possible. No foolin’, I’m pretty sure I went through six liters of diet soda this morning.

It eventually occurred to me (by which I mean my wife told me) to check my temperature, and it was up to 103 degrees. We called my doctor’s on-call nurse, and after some back and forth realized that there had been a misunderstanding about my steroid prescription. While that might have been the cause of the high temperature, her medical advice was to keep an eye on my temperature and make sure it didn’t go any higher, and otherwise to just get some rest.

That all turned out to be pretty good advice, because after laying in bed for approximately eight hours, I woke up with a normal temperature of 97 degrees. And a little sweat. Okay, maybe more than a little sweat.

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Actor’s recreation of my post-nap state

All right, fine. I woke up with so much sweat that Haley and I had to immediately change every sheet and pillowcase, including the special sheet and pillow protectors that we’ve been using since chemo started, because I had soaked through absolutely every layer of everything we had.

After a cool shower and change of clothes for me, I’m feeling a good bit better (certainly less thirsty). According to my local medical expert Dr. Wife, this type of rapid fever and sweating is a common Lymphoma symptom, just crazy fevers out of nowhere as my body tries to fight the disease in my blood.

So the day was a little bit “wasted,” but if there’s a day to do that, the day after Thanksgiving is probably the day for it. The rest of the family spent their day playing games and resting, so it wasn’t like there were many family activities to miss.

And now that I’m feeling better we can continue with this week’s tradition of dinner followed by a Fast & Furious movie (for the purposes of this week, they will be referred to as Fast & Turkeyous). Tonight we wrap up the series, learning the Fate of the Turkeyous. I’m betting it involves a lot of destroyed cars and the Rock throwing someone through a ceiling.

Thankful

Happy Thanksgiving, everyone.

I’ve always had a lot to be thankful for, especially as the years have gone on and my life, family, and career have kept on improving to almost ridiculous levels. This year, for obvious reasons, I have even more to be thankful for.

I’m primarily thankful for Dr. Jacob Smeltzer and his staff at St. Luke’s East Hospital in Lee’s Summit. Dr. Smeltzer and the other doctors and nurses in his office have been going above and beyond what’s expected of them (and what other doctors have done) to help me get through all of this.

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The people inside this building have saved my life, and continue to do so.

This fight is still ongoing, and there’s a lot of rough road ahead, but I know it’ll be easier with Dr. Smeltzer and his team by my side.


Of course, this being Thanksgiving, there’s more to the day than sincerity and thankfulness. There’s also food, and lots of it.

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Artists’ rendering of the Higgins Family Thanksgiving

Haley’s brother Matt is still in town, so everyone’s been having a blast. We’ve been watching movies and he and the boys have been playing all sorts of games while school is on Thanksgiving break.

The actual Thanksgiving dinner should be pretty relaxed this year, which I always prefer. Some years things are a little more formal, but I think the plan for this year is to have a nice big dinner, sit by the fire, and doze off while watching action movies.


Whatever you and yours are up to, I hope you all have a wonderful day. No matter how dry the food comes out, or how many commercials there are during whatever movie marathon your family decides to watch, I hope everyone remembers the true meaning of the day: That Television was created by a Canadian turkey in order to avoid being murdered by pilgrims.

Happy Thanksgiving, everyone.

Gettin’ Out

With the boys spending Tuesday night with their mother as usual, and Haley’s brother Matt being in town, the three of us decided to head out last night to catch a movie. Haley and I have been waaay behind on movies, and had been wanting to see the new Thor, so we went out for the seven o’clock show last night.

The movie was fantastic, but what was really surprising was how much going out to a movie took out of me. Halfway through I was ready to fall asleep, and by the time we got home I had no energy at all. I literally walked in the door, sat down on the couch, and fell asleep.

My energy levels have been real low in general lately, but this being the first time I’ve gone out to do anything recreational in a long time was a pretty good illustration of just how far my stamina has fallen: Going to an “activity” where I sit in a room for two hours is just about too much for me.

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Artists’ representation of my current energy level


I know I promised more Daddy School videos, and I have a couple of ideas that are ready to go, but I’m holding off for two reasons:

First, I still have a big mark on the side of my face from last weekend, when my ottoman jumped up and punched me.

Second, for about a week now, part of my face has gone numb which has affected my speech. It’s a small patch of my face, on my right side, mostly affecting my lower lip on that side. It’s not an enormous deal, and it’s improving, but if I’m going to be filming videos for people to watch later, I may as well wait a couple more days so I don’t have an unexplained speech impediment.

Anyway, that’s all to explain that there will be more videos forthcoming once I no longer look and sound like a bruised neanderthal.


Lastly, schedule-wise I was dead on in my prediction from the other day. My treatment for today (Wednesday, 11/22) has been cancelled and rescheduled for Friday, the day after Thanksgiving.

I’ll be getting another Spinal Tap, and I’m getting pretty used to them now, so things should go pretty smoothly. I’ll likely bring my headphones and just try to pass out and listen to a podcast or something.

In the meantime, I hope everyone reading this has a wonderful Thanksgiving, and enjoys all the family and food they can. I love you all, and I’ll continue to post updates as often as I can.

The Way Things Is (as of November 21st)

Hey everyone!

Things have been going pretty well since I was discharged from the hospital on Saturday. My legs have been regaining their strength even quicker than I had hoped, and I’m able to walk around the house without any issues. My appetite is still completely gone, but that’s not that big of a deal; As long as Haley keeps forcing Ensure into me so I have some nutrients and whatnot, I should be doing just fine.

We’re still on Operation Egg Salad, which involves “normal” Chemo every three weeks and a special drug delivered to my brain and central nervous system via Spinal Tap

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Pictured: Typical Spinal Tap Process

I’m going to give up a whole bunch of sympathy points right now, and tell you all that getting a Spinal Tap is not quite as bad as you’ve heard. It ain’t pleasant, but once the needle is in the pain is very manageable.

The worst part is what happens after the Spinal Tap, which is that you have to remain completely flat for two hours. The way the chemicals and gravity and your spine all work together, getting up and moving around after a spinal tap could give you a headache so bad that you are likely to want to murder everyone around you.

Luckily, I have several years of experience in laying flat for several hours, so it hasn’t been a problem for me so far.


So what’s next? I currently have another Spinal Tap scheduled for Wednesday, but I think that one is a mistake and is going to be cancelled in favor of one on Friday or some other time. Basically scheduling is a little bit of a mess right now.

We’re having family come in and out of town for the next few months; Right now Haley’s brother is in town, which is great for everyone. The boys love him, he gets along great with everyone, and it’s always a blast when he’s in town.

My father will be in town starting in a week or two, and then my best friend (and former boss) Mike Armstrong will be staying out here for a week as well. We’re all looking forward to these visits, especially since they coincide with the holidays. Thanksgiving should be a blast, and, of course, I have my usual way over the top Christmas plans.

That’s it for today, I’m going to try to post more frequent updates to keep more people in the loop, but for now I’m going to go see about taking a quick nap. I love you all, and feel free to drop into the comments!

The Way Things Is (as of November 19th)

Greetings, readers. I was discharged about noon on Saturday, and I am, once again, back in my wonderful home with my wonderful family.

This previous week started out with some pretty rough business. I was admitted into the hospital with a fever over 103 degrees, and the doctors had some very somber news. One doctor, whose opinion I trust very strongly, truly made it sound as if I have only weeks to live.

This diagnosis was based on two primary points:

  1. The lymphoma appeared, as of Saturday, to have spread to my lungs and given me pneumonia.
  2. My right eye was behaving in a way that made it almost certain that the lymphoma had also spread into my central nervous system, including my brain.

Both of these matters are very serious, and would indeed dramatically lower my current life expectancy. Since then, however, the following developments have occurred:

  1. My primary oncologist, and the doctor who has been saving my life, spent a lot of time speaking with specialists at the Mayo Clinic. Between them all, they’ve devised a course of action that they feel very good about.
  2. On Wednesday, I started on Stage One of this new plan, which involves a new experimental chemotherapy drug called Brentuximab (and this will be the last time I spell that). So far it seems to be working well, and the side effects have been minimal.
  3. The second and final stage of this new plan (since it involves the Mayo Clinic, let’s call this Operation Egg Salad) will start on Monday morning, when I’ll be getting additional experimental chemotherapy drugs. Only, these drugs won’t be delivered via intravenous plug, or pill, oh no… this drug will be administered via Lumbar Puncture (also known as a Spinal Tap).

The last thing is, and this is a point I keep trying to make but I want people to hear very strongly: I am not giving up, and I am not going anywhere. It’s in my nature to make sure that every potential disaster down the road is accounted for, so I’ve been working with my life insurance company and making all other sorts of plans, but these are only to keep any worry off of me and my immediate family.

I am sick. I am fighting a very rare and very aggressive disease that wants to kill me a dozen ways. But I am not dying. Repeat after me, please: Ed is not dying.

Unless you’re one of two people in the world, you have no idea how hard I’ve had to fight in my life, and how strong I really am under all this goofiness. I don’t care how strong this disease gets or how many treatments it needs or how many things it takes away from me: I am not going anywhere.


Now that that business is out of the way, I quick update on being home. My hip has completely healed from the surgery a few weeks ago, so my walking is fine. Every doctor is always concerned about their patient falling, especially one like me with so many leg issues. But I’ve healed very well, and I spent the past week walking around my hospital room with no issues at all. Since I’ve gotten home I haven’t even needed my cane (“Michael”).

Of course, the minute I’m home alone I catch my leg on the bottom of my recliner, lose my balance, and whack my face on the edge of the ottoman on the way to the floor.

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Can’t hide this one; So now I have to use “Michael,” because there’s no way my doctors will ever let two falls slide without making me do something stupid like surgically attach walkers to my arms.

Also, now that it looks like my wife kicked me in the face, I need to make up a cool reason for her to have done that. Maybe she caught me looking at some really weird porn, like Giraffes, or Squids, or old tires or something? Help me come up with some ideas in the comments, please.

 

The Way Things Is (as of November 16th)

As usual, there have been some drastic changes lately.

I came into the hospital last Saturday, in the hopes of refilling my painkiller prescription. I had stupidly forgotten to do that during the week, and the only way to get a refill during the weekend is to check in with an actual doctor. When the doctor saw me, he looked at my fever of 103.3 degrees, and decided that I wasn’t going anywhere.

So I was admitted on Saturday afternoon, and a couple of other issues were quickly noticed. For one, I appeared to have something in my lungs. Even worse, my right eye, which I’d been having trouble with since my hip surgery, appeared to show something in my brain pressing on some nerves.

After four straight days of tests, including my very first Spinal Tap (aka Lumbar Puncture), it’s been determined that my Lymphoma has spread to my lungs and into my brain. That second part is pretty bad.

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My reaction upon hearing the test results.

So. Our current plan – and I emphasize current, because things change at the drop of a hat around here – is for the following:

I will be taking a new, somewhat experimental drug to deal with the existing cancer in my legs, lungs, and basically everywhere else below the neck. This will be just like my old chemo regimen, only stronger. One treatment every three weeks, and then keep an eye on the potential side effects.

I will also be travelling to the Plaza location of the hospital (which I do not have fond memories of), for an additional treatment. This one will be twice a week, and it will consist of a special drug being administered through Lumbar Puncture.

So, to repeat, that’s two Spinal Taps for me each week for the foreseeable future.

My doctors have been supportive, but they’ve also been getting grimmer and grimmer. I’m going to be honest and admit that things are getting pretty serious. The fact that the cancer has entered my brain is about as serious as things can get, and some of my doctors have even suggested I consider just taking it easy, making sure I’m comfortable, and spending the time I have with my family.

I can’t do that.

I don’t mind dying, I truly don’t. I’ve had a great life, certainly a better one than I deserve. But have you met my kids? Have you seen how amazing they are? I’m not leaving them. Not yet. I have lots more to teach, and they have lots more to show me. No matter how serious this all gets, and no matter how many painful treatments I need, I am not giving up.

I’ve survived more, and worse, than anyone reading this knows, and I’m going to survive this. I know I keep a positive attitude, and try to keep things light-hearted, but I am a fighter, and I am going to fight this.

To help get information to my boys, I’ve started working on a series of videos entitled Daddy School, the first of which I posted late last night. These are intended for my boys, but anyone can watch them if they find them entertaining.

I’m also working on putting together a college scholarship fund for the boys, so that anyone who gets the urge to help can throw in ten dollars now and then. This is still in the works, but once it’s up and running I’ll be posting links to it pretty constantly and shamelessly.

This is a pretty crazy time, and there’s a lot going on. For all I know, the plan may change again next week. But for now, this is the way things are. If you have any questions, please feel free to reach out in the comments.

Big Changes, Big Questions.

After another series of tests, and taking my hip, various doctors have talked amongst themselves and decided that my treatment is not currently working. As such, the transplant I’ve been waiting for has been cancelled.

Where do we go from here? I’m not sure. There are some possibilities, and we’re looking at each of them, but as of 4:30am on Thursday, November 9th, there is no plan. I know some of my friends, family, and co-workers like to know what the plan is so that you can help, but that’s just not something we have right now.

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Artist’s rendition of the current plan

At the very least, this is going to involve starting over from step one. It may involve flying to special hospitals in other cities, or experimental drugs, or shrinking myself down to a subatomic level, get injected into my bloodstream, and find each individual t-cell and stomp it’s ass.

(Wait… if I was subatomic… and how would I inject me into me? This one may need a second draft)

Having said all that, due to the history I have with these doctors, there’s a 10% chance one of them will call me tomorrow to tell me I have a transplant scheduled in ten minutes, only they need to turn all my toes backwards. I am becoming more and more convinced that my lead doctor is actually Rocket Raccoon.

That’s all the information I have for now. If you’re worried about me, please stop. I’m fine. If anyone could use your sympathy, it’s my wife – She’s had to deal with the brunt of all of this. There’s nothing “brave” or “strong” about having cancer, I just lay here. It’s the woman who makes sure I take every last medication, tracks every appointment, drives me to every appointment, checks on me throughout the night, pushes doctors for answers, and still finds the time and energy to take care of a house of four.

As for me, all I have to do is keep getting up every morning, no matter what, and that’s not stopping any time soon.

The Way Things Is (as of November 5th)

I’m out of the hospital and back home, with a fancy new metal hip joint and everything.

I was admitted early Tuesday morning, and had the surgery pretty quickly. I then woke up about ten hours later with a whole lot of new sensations and feeling like a cotton-headed ninny muggins.

Y’know how each hip joint consists of a ball and a socket for the ball to rotate in? If not, maybe go search google for “hips” and click on the first link that doesn’t have the word Shakira in it.

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Anyway, it turns out my cancer ate away so much of of the ball of my left hip, that it was ready to crack any second. This explains all the pain I’ve been having in my left hip the past few months.

So my orthopedic oncologist destroyed that ball, and replaced it with a new metal ball joint. That metal ball joint will use the same ‘ol socket my hip has had all these years, because we haven’t spotted any problems there.

She also scraped out all of the cancerous material from the damaged joint, and sent it out for testing. We don’t have every test result back yet, but so far it looks like it an old dead tumor, and not new cancerous activity.

So I spent Tuesday, Wednesday, Thursday, and Friday at the hospital, working with both Physical Therapy (PT) and Occupational Therapy). Perhaps you, like me, did not realize that those were two separate things. But alas, they are, and they often want you to do the same exercise(s)  over and over again.

After four days of trying my charming best, and some light cajoling, KU finally agreed to turn me loose. Haley came and picked me up, and now I’m back in my wonderful little house with my wonderful little family.

I had a lot of meetings planned for this past week, that were wiped out by this emergency hip surgery, so I’m trying to get them re-scheduled as soon as possible. I’m sure I’ll have some updates to my scheduled by lunchtime Monday.

The pain isn’t too bad right this second, but if I move my hip in any sort of unusual way the pain reminds me that it is very important not to do that.

I missed blogging while I was in the hospital, and so I have a bunch of things I need to circle back around on. Things like Halloween, and the fact that my son Logan was selected as first chair for Trombone in the Kansas City Metro District Honor Band. That may sound like a bunch of gibberish, but trust me, it’s a pretty amazing accomplishment. We’re all so excited for him.

I think that’s everything for now, just wanted to try and get caught up with some things. I’ll hopefully have the time and energy to post more often this coming week.

Manamanah.

Doo do do doo do.