Stress

One of the interesting things about major life events like my cancer diagnosis is that there really isn’t much of a change in life for just about everyone else on Earth. There’s definitely a big effect on close friends and family, but things don’t suddenly change at my kids’ school, or the grocery store, or my bank.

No matter how I feel when I wake up in the morning, my son will still have diabetes, we’ll still need money for food, and most importantly, my close friends and family will still need love and support.

That last one isn’t usually a problem, as I’ve been pretty good about keeping things upbeat and positive. But between last month’s negative comments from my medical support team, the uncertainty of where my cancer is at and what affect we’re having on it, and new actual physical symptoms like my facial numbness, it’s been getting harder to keep that forward-focused attitude lately.

There’s also been quite a bit of confusion regarding scheduling, mostly regarding appointments and visits from family and friends; None of it has been bad (in fact, it’s all for great reasons like new treatments, or having friends and family come into town), but the fact remains that I’m the final decision maker when it comes to everything, no matter how much energy I have, or how I’m feeling physically.

There’s also the matter of the medications themselves. I’ve had some serious issues dealing with stress in the past, and I was prescribed anxiety medication months ago. That medication helps quite a bit, and I haven’t had as many issues with anxiety and anger since getting on a regular medication.

However, there’s also now a lot of new medication related to my cancer, including some that have behavioral changes listed as a common side effect. That’s not something that I think would be a problem by itself, but when piled onto other potential problems, and the fact that life’s daily stresses don’t just stop and wait for me to feel better, feel a little like an anxiety attack just waiting to happen.

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I bring this all up now because yesterday morning (Monday) I had some issues dealing with a situation that normally wouldn’t be that big of a deal. It was a fairly normal problem with my son’s diabetes, but I wasn’t able to react to it in what I like to think of as my normal even-handed approach. Instead I got fairly angry and stressed out and turned what should have been a relatively smooth morning into a bunch of people angry with each other.

Why? What happened? Is it stress from very recent events? Is it issues with my old medication? Problems with my new medications? I honestly don’t know and that’s a problem. The only thing worse than the stress is not knowing where that stress is coming from, and I honestly just don’t know what’s happening. I do know that there’s currently nothing currently on the table to mitigate that stress, or help my close friends and family deal with it, which all just adds to the anxiety.

I have an appointment to review everything with my oncology team tomorrow (Wednesday) morning, and I’m hoping to speak with them about what’s happening to me and what I can do about it, but I’m not feeling too hopeful at the moment. We’ll see, I guess.

In the meantime, all I can do is try to relax and avoid doing too much damage to my relationships with friends and family. Of course, even that solution feels like a cop-out… if I’m the problem, “relax” feels like a pretty half-assed solution.

Having said all that, this is still the beginning of the week. There’s always room for things to get better.

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!

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.