Help

I’ve always been a very solitary and private person. I was raised as an only child, and had a very small group of friends. When I’m asked if I need help with anything, my reflex is to immediately answer that I’m fine.

That’s all had to change lately.

These days I really do need help. It’s an unusual and odd feeling, having to rely on so many other people. I’ve been dealing with hospitals for almost eight months at this point (whoa), so I’ve gotten used to being “helped” in the sense that hospital employees have been doing their jobs… taking vital signs, communicating information, and performing other formal duties.

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This may not be the kind of help I’m looking for.

What I’m not used to is people helping because they want to help. It wasn’t until I had a home heath aide come to the house this weekend that I realized that people other than my wife had help to offer that went beyond medical advice. We’ve had family in town recently, and they’ve all been a huge help, but there are limits to what they can do.

Over last weekend, we had an aide visit from a really nice and helpful woman that actually left me feeling somewhat positive about what’s happening to me, which is obviously a new thing.

It wasn’t just that she had positive things to say about my prognosis, it also had a lot to do with her demeanor. This will sound strange, but she acted as if I was a victim of something terrible and needed help, not as a “patient,” if that makes any sense.

Actually, after re-reading this and thinking more about the visit, I think the key word was sympathy. I’ve been getting sympathy from other people of course, so that’s not a new thing, but the ability to convince me that I’m going to be okay was such a great feeling.

Hopefully these visits will continue, and they’ll leave me with the same set of positive feelings. Regardless, I’ll take all the help I can get these days.


Due to my illness, we have created a Gofundme campaign for my sons’ college tuitions. If you can spare anything we greatly appreciate it. If not, simply sharing this link would be a big help. No matter what happens, Haley and I want to be able to give the boys the best future possible.

Should I recover, all donations will be refunded.

Link to make a donation: https://www.gofundme.com/edhigginsmemorial

The Way Things Is (as of December 4th)

Hey everyone! Hope you all had a great weekend.

I’m still in the hospital (St. Luke’s East), and will likely be here through the middle of this week. We’re not 100% certain what caused the emergency from last week, so I’ll be here until we have that mystery figured out.

For what it’s worth, though, I’m feeling fine. Even after five days of laying in the same damn bed and being constantly poked and prodded, I still look at least somewhat human.

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Fig. 1 – Large North American Male after being subjected to one week of the American Health Care system.

Here’s what we do know:

  • When I was admitted, I was in sepsis (aka severe blood poisoning).
  • I also had a fever of over 103 degrees Fahrenheit.
  • Lastly, scans of my lungs showed a large amount of blockages that weren’t there the previous week.

After several days of additional scans and tests, and a lung biopsy* (more on that one later), we’ve lowered the main possibilities to two:

  • Due to my wasted immune system and crazy low white blood cell count, I caught some kind of infection (my wife and son were sick last week, which could account for this) that resulted in severe pneumonia. This would be a pretty good result, because we could simply treat the infection and take care of my immune system moving forward.
  • The other possibility is that my Lymphoma suddenly exploded without warning or obvious reason, and spread to and throughout my lungs. While this is very, very unlikely, it would also be very bad news, and would mean that we’ll need to again adjust my chemotherapy.

As I mentioned previously, one of the tests they performed to try and diagnose my lung issue was a lung biopsy. As it was explained to me, it’s a simple procedure where a needle is inserted into a numbed spot in my side, and a piece of the abnormal lung is pulled out in order to be studied. And, as far as I can tell, the biopsy was successful, and a piece of lung was successfully extracted for testing. Hooray!

However! There was a little surprise in addition to the biopsy, a surprise called Pneumothorax. This is a condition where the doctor accidentally lets out some of the air that’s supposed to be hanging out in my lung, and isn’t immediately able to replace that air. Soooo I ended up with a partially collapsed lung. Not so Hooray!

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It wasn’t life threatening, but any type of deep breath resulted in the kind of pain where your eyes pop out like that lady who was popular on talk shows in the 90s. I would not refer to the next few days as an enjoyable experience.

Anyway, we’ve got it fixed now, and I have to really try hard to get that pain to come back. For now my breathing hurts just the normal amount.

So that’s where we are, mostly in a holding pattern waiting for those test results. Obviously I’ll share them once they come through, and we can all celebrate together or maybe just stare at a wall or something.

There’s also Christmas coming, and family is in town, so I have lots to blog about. Hopefully I’ll have the time and energy to get back on a pretty regular writing schedule. Have a great night, everyone!

 

When things get scary.

It seems like this is how half of my posts start off, but things got pretty serious this week.

Since my last hospitalization, I’ve been taking scheduled medications (mostly painkillers) twenty-four hours a day, so I’m typically awake off and on throughout the night. Early Wednesday morning I took my normal medication in the middle of the night and felt normal (well, as normal as I have been lately).

Then, around 6am, I woke up and everything felt wrong. I don’t know how to specifically describe how I felt other than that it was very, very wrong. I felt a little like I needed to vomit, and a little like I needed to lay down and pass out, but nothing I did helped get rid of an urgent sense of something inside me being very out of order.

The worst part is when my wife, Haley, tried to communicate with me. I could not communicate. I’m going to repeat that for emphasis: I could not communicate. She would ask me very simple questions, like “What’s wrong?” and I would not be able to form a sentence to reply. The most complete thought I could put together was something along the lines of:

“I… the. There’s a… No.”

Reading this now it sounds like a joke or something silly, but it was one of the scariest moments of my life. I’m a smart, capable 40-year old man and not only was there something seriously wrong with me that I couldn’t identify, but I had completely lost the ability to communicate.

It was just as scary for Haley, watching her husband instantly lose the ability to communicate. Despite her terror, she made the exact right decision and called an ambulance. My memory isn’t 100% on what happened the following few hours, but I remember the ambulance arriving and the EMTs gently convincing me to board the ambulance despite my protests that I was feeling better (I was not feeling better).

We arrived at St. Luke’s East, the hospital I’ve spent most of the previous six months at, and my disorientation continued. Nurses would ask me a question and I would repeat the question back to them, or ask them something else about an unrelated topic. I attempted several times to get a drink of water from my disposable urinal. When the hospital staff asked me what was wrong I was again completely unable to articulate what was happening to me. Luckily Haley arrived and was able to give the staff some actual useful information about what was happening.

The very early initial diagnosis was that I had a serious infection, possibly pneumonia. I mostly remember sitting frozen at the edge of my bed feeling hot and thirsty. If I remember properly, it was around this point we saw that I had yet another fever, this one over 103 degrees.

After several hours of having fluids, antibiotics, and other medications pumped into me, I started to get my faculties back and began to be able to form sentences. Luckily, we had previously scheduled a trip for my father Paul to come out and visit during the month of December, and his arrival happened to coincide perfectly with this hospital stay. He’ll be able to lend a hand with the kids and chores around the house, which is going to be an enormous help.

Finally, late in the afternoon, after spending approximately eight hours waiting in an ER room, a patient room opened up in the hospital proper. So I was moved there and have been mostly sleeping and going through tests that I’ll elaborate on in a future posts.

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The view from my current hospital room, which is the best I’ve had yet.

For now, It’s enough to know the following:

  • I had a very scary moment Wednesday morning.
  • I am back in the hospital and improving.
  • The current diagnosis is a bad infection involving my lungs.
  • Thanks to my wife, and the staff at St. Luke’s East, I’m going to be okay.

Now I’m going to go back and get some rest. I love you all, and please feel free to drop a line in the comments if you’d like to talk.

The Way Things Is (as of November 26th)

Hey everyone! Another week, time for another update.

It’s been a fairly dead week in terms of medical appointments due to the holiday, but things are going to pick up again next week. I have another Spinal Tap scheduled for first thing Monday morning, where I’ll get another set of chemo drugs delivered to my brain.

It’s been a few posts since I’ve gotten into it, but a refresher on how the Spinal Tap works:

I’m wheeled into a normal procedure room and laid face down, the position I’ll stay in for the following three hours. The main technicians then inject a large needle into the lower part of my spine, which is used for two purposes. Firstly, cerebrospinal fluid is removed for testing purposes, so we can see exactly how much of the cancer has reached my brain and/or central nervous system.

Secondly, the same injection site is used to administer chemotherapy drugs in a method known as “intrathecal,” where the medication is delivered directly into the brain.

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This is obviously an artist’s representation, because I don’t own blue shorts this tight.

This’ll all be followed by a visit with the full medical team on Wednesday morning, where we’ll see where we’re at. My hope is that we’re back on track toward obliterating the existing lymphoma, but there’s a real wide set of possibilities that we could come back with… anything from “the cancer is getting its ass kicked!” to “let’s start talking about our palliative care options.”

Energy wise and health wise I’ve been feeling pretty good the past few days. My sleep schedule has been gradually making its way back toward normal, even with all of the various and assorted medications I’ve been prescribed.

I’ve tried to focus most of the medications to be taken at 8AM and 8PM, which is convenient, but it also leaves an awful lot of other medications, mostly painkillers, to be taken throughout the day and night, every three hours. It makes it a little difficult to keep that normal sleep schedule, but I’m doing what I can.

Of course, I have a lot more topics I’d like to write about, and I still need to record the Daddy School videos that I’ve started, but for now things are going pretty well. Certainly better than they appeared to be going a few weeks ago.

And, of course, close and extended members of my family are coming and going for the foreseeable future, which is wonderful. It’s also teaching me quite a bit about accepting help, about actually sitting back and letting people help me, which is something that I’m not used to and is taking a surprising amount of effort to get used to and accept.

So we have spinal taps, medical reviews, family, holidays, and a hundred other topics I want to write about that I’m not going to get a chance to go over today. In the meantime I’m going to keep living, and doing what my doctors tell me, and fighting this stupid thing that’s in my blood every way I know how.

As always, please direct all questions, comments, threats and requests for nudes to the comments here on the blog, and I’ll get around to them. Take care everyone!

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.

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.

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.

Status

Too Hip to Make a Pun

Only have time for a quick update today, but it’s a doozy. My meeting with the Orthopoedic Oncologist yesterday revealed two things:

  1. The “hot spots” in my legs are not active cancers, but substantial bone damage from the original cancer.
  2. Before we can continue, I need an immediate “partial replacement” of my left hip joint.

These doctors move fast, so that surgery is scheduled for about two hours from now. I’ll be in-patient the rest of the week recovering, but I’ll have my laptop and superwife so I’ll almost certainly have a better week than any of you.

I know you have questions, so I’ll answer two that I’m just gonna make up right now. Yes, you in the plaid?

Q. Hi, I’m a real idiot. What is a partial hip replacement?

A. Hi, friend. There are no idiots, only terrible school systems that have been abandoned by those in power and given no path to succeed due the collapse of the middle class and unionized labor.

What was your question? Oh, right, that dumb thing where you can’t read. Well, buddy, take a good look at this picture:

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Now you know what I know, which is that the plan is apparently to replace my bones with something suspiciously resembling a marital aid (or “shower massager” for the conservative men out there).

Was there another made up question?

Q. But Ed, you are my sunshine. With you out of commission, who will make us laugh? Who will bring us joy? Where will the sun go?

A. Oh, you poor poor fool. There are other heroes in the world. While it’s true that I am as close to a perfect golden demigod as man has yet produced, clearly some of the people below are able to bring you some happiness. Just look at their well thought out public relations campaigns!

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Here we have the friendly Aquaman, being “Fair.” How is being fair? Well, clearly little Braden here has damaged the turtles ecosystem. In return, these majestic reptiles have gotten baked out of their minds and are prepared to eat this small boy. That’s underwater justice.

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And you can’t forget Batman, being all “Trustworthy.” As we all know, nothing says “Trust me!” like an anonymous middle-aged man putting on a mask and flying away with inner city children. He’s an example for us all, especially the serial killers and pedophiles.

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And finally, we have The Flash, doing a good deed that couldn’t possibly be misconstrued. There’s no way anyone could look at this well thought out picture and see something like, oh, I don’t know, a symbol of white authority with power beyond those of his fellow citizens using that power to take an underprivileged and likely uninsured child of a historically oppressed people, and removing him from private healthcare property at super speed!

Wait… did he electrify that kid’s wheelchair? The hell? You’re a real jerk, Flash.

(Images courtesy of Mike Sterling of Sterling Silver Comics)