Cancer

Falling

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We had another very scary incident the other night. I woke up very early Thursday morning, needing to use the restroom. I considered asking Haley for help, but she’s been tired and I wanted her to get as much rest as possible, so I decided to let her sleep.

(FYI, my “bed” has been a particular spot on the couch for the past few weeks. It’s more comfortable than it sounds)

I successfully used the bathroom without help, but the effort completely wiped me out. I then made a terrible decision and tried to grab a soda from the fridge on the way back to “bed”. As I went to close the door to the refrigerator door I stumbled slightly and lost my balance. I was able to control my fall so I didn’t hurt anything, but I ended up on the floor and unable to get back up.

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I called out to Haley for help and she came running. The experience was terrifying for her, being woken up by her husband yelling for help. When she got into the kitchen, I was leaning back against the refrigerator, struggling to breathe. Taking some time to relax and concentrate on my breathing helped with the oxygen situation, but I was still stuck on the floor.

After several aborted attempts to get me up off the floor, I ended up pushing myself backward across the kitchen and living room floors. This left me leaning back against the couch, but still unable to get up off of the floor. It took approximately 20 minutes, but we were eventually able to get me up onto the couch thanks to Haley’s incredible strength.

It might sound like a joke or exaggeration, but to get me up off of the floor Haley had to dead lift a 250 lb man. I truly was just dead weight, unable to provide any help. I am continually impressed by this woman.

I’ve read what I’ve just written, and it does not convey just how scary this whole experience was. I spent nearly an hour on the floor of my own house, completely unable to get up. I was helpless in every sense. To help ensure this never happens again, I will be getting Haley’s help any time I need something from another room.

We also found out that if something like this does happen again, it’s possible to call the non-emergency number for the Fire Department and they will come out to help. That sounds embarrassing as hell, but at this point I frankly don’t care about my pride.

Regardless, the time I spent laying helpless on the floor of my own house, unable to stand, walk, or even crawl, was enlightening. I knew that trying to do things on my own was a little “dangerous,” but this really drove home for me the potential consequences and just how close I am to causing myself serious harm.

Thank goodness I have the support system I have, especially my wife. I’ve said it before and I’ll continue to say it: I would not be here if it wasn’t for their help.

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

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Help

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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

Oxygen is Good

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We spent a lot of time this weekend dealing with “Home Health” people. Saturday morning we had a worker stop by from an agency that handles Pallative Care. After a lot of discussion, we realized that what we want isn’t Pallative Care but Hospice Care. I’m still a little fuzzy on the distinction – I believe Pallative Care is designed to manage the pain of stable patients, while Hospice is preparing for death, but either way the practical results of each mean that Hospice is going to be better and easier than Pallative in terms of getting help.

First on the list of that help is Oxygen. Last night a worker from the Hospice agency stopped by and dropped off an Oxygen machine. It’s not quite what I expected… I was expecting either a small pack that strapped to my waist or something, or a device involving actual oxygen tanks. What I received instead looks more like a carpet steamer; We fill it with distilled water, and it provides the oxygen through the usual tube and canula that I used in the hospital.

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Using the home oxygen canula

It’s only been one day, but the oxygen has already been a giant help. Just the other night I struggled trying to sleep, because every time my concentration dropped my oxygen would drop dangerously low. Now that I’m ensured of at least a steady supply of oxygen, I can drop my attention enough to get some actual sleep.

We’ve had several guests in town lately, which has been great. My father’s been here a few weeks, and he’s been great about helping with practical things… helping run errands, take the boys out of the house, things like that.

My best friend Mike Armstrong arrived here over the weekend, and that’s been so great. I don’t see get to see Mike very often, as he lives in Utah, but he’s my best friend in the world and any minute I get to spend hanging out with him, even while I’m this sick, is a delight. The hours we’ve spent watching terrible movies and playing bizarre video games with my kids have been a great distraction from what’s happening to me, and I always feel better when Mike’s around.

In terms of strategy, we’re still pinning all of our hopes that MD Anderson down in Houston has some kind of treatment that will do something. So far we’ve been unable to find any treatment that even slows down this stupid lymphoma, which is pretty crazy. So we’ll be flying out of Kansas City on the 19th of this month. There is no pre-planned schedule of what’s going to happen once we’re down there, so I have no idea what to expect. I’ve booked everything for a return trip that weekend, but we could be staying anywhere from one or two days to several weeks.

Obviously I’d prefer to be home for Christmas so I can spend it with the boys, but a quick trip to Houston also likely means they have nothing for me, so we’re just gonna have to see what happens once we get down there.

Lastly, I finally put up the fundraiser for the boys. I hate doing this – asking for help is humiliating enough, but asking for actual money runs against all of my instincts – but the boys will need help when I’m gone, and they will always come first.

While donations are obviously hugely appreciated, you can also just share the link to people you know. I’m terrible at getting the word out and social media in general, so every person you can share the link with is a help.

Link to fundraiser campaign: https://www.gofundme.com/edhigginsmemorial

Thank you everyone. Please feel free to leave any questions or comments below.

 

Getting Serious

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Hey everyone, hope you’re all doing well.

I try to keep things pretty light-hearted on this blog, but that’s going to be difficult for a while. My condition is deteriorating, and the lymphoma has officially spread to my lungs. Breathing has gotten pretty difficult, and any effort on my part, even going to the bathroom, requires extensive rest and recovery.

My primary oncologist here in Kansas City is pretty pessimistic, and has told me that he’s basically out of options or treatments to try. There is a special hospital in Houston called MD Anderson that is something of a last resort for us right now, and I’ll be taking a trip down there on December 20th.

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Current Goal

As it is right this minute, I’m frankly not well enough to travel. I will need some kind of portable oxygen, which we’re still hoping to arrange. We need to arrange oxygen for when I’m home, too – keeping my O2 levels up has been a struggle for a while now.

Anyway, based on everything going on right now, if I do nothing I’ll have just a few weeks to live. We’re not giving up, and I’m going to fight this stupid disease with everything I have, whatever it takes. For now the goal is to make it to Houston and hope they have something, some kind of treatment, that can slow this thing down.

Of course, I have to plan for the worst, so I’ve set up a fundraiser for my kids’ and their future college tuition:

Click to Donate Now!

I’ll try and keep the updates coming as much as I can, but fatigue has been an obvious issue. Sleep has been tough, and the sleep I’m getting has been pretty rough with the lack of oxygen.

Anyway, have a great day and I’ll hopefully be updating again shortly.

When things get scary.

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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.

Big Changes, Big Questions.

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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.

What is Chemotherapy Like?

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When I was first diagnosed, and told that I’d be getting chemotherapy treatments, I really had no idea to expect. In my head, I was picturing being strapped down to a chair while a green laser shot into my eye, so I’m pretty sure I thought chemo was what turned Bill Bixby into the Incredible Hulk.

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Pictured: Not Chemotherapy

In the hopes of saving other people unnecessary worry about being Hulkified, I thought it would be a good idea to share my experience of what chemotherapy is like. Keep in mind that this is my experience, and your treatment regimen may be different.

For what it’s worth, the specific chemo regimen I started with is called E-CHOP (or CHOP-E, or CHOEP – basically they had a cool backronym with CHOP but then had to add an E in there), which stands for a bunch of drugs that I’ve forgotten the names of. I know the P is Prednisone (a steroid), and I think the E is for something like Etopicide, which is probably some kind of rat poison.

The chemotherapy I was originally receiving was scheduled over six three week periods. I would go into the hospital for days 1-3 (as an out patient) and get my drugs, then spend the next two and a half weeks recovering.

That chemo turned out not to be strong enough for my particular cancer, so my new regimen involves fewer days and stronger drugs. Now I receive drugs on days 1 and 8, and go in twice a week to have my blood tested to make sure the stronger drugs aren’t melting my blood.

Okay, so, back to the original topic, what is chemotherapy like? If you’re going to be receiving chemotherapy, your doctors will almost certainly recommend that you have a port installed. It’ll seem weird, but it really is a good idea. What they’re going to do is install a piece of equipment into your chest, under the skin, that will connect to the veins near your heart.

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What my port looks like several months after installation

The reason having a port installed is a good idea is the amount of time and pain it will save you in the long run. The port allows a qualified nurse to only inject one needle, that can then be hooked up to multiple inward and outward lines. This way, any time the nurse wants to take some blood, or start a new IV line, they can just hook it up without having to inject you with anything. If you have multiple days of chemo scheduled in a row, you can even leave the line in for a few days, saving you more injections.

Speaking of multiple days of chemo, how should you prepare on a treatment day? If you have a port, try to wear something that buttons up, to make your port easier to access.

I also tend to think of treatment days like airplane flights; Once you’re checked in, you have hours of sitting in one chair ahead of you, so you should make sure you have everything you need ahead of time.

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The contents of my chemo bag: Desk fan, bag of wires, pepto, lip balm, travel tissues, hand sanitizer, pain meds, portable game system, emergency back-up charging battery, pen, and tablet.

Not pictured above: Granola bars, Powerade, and unstoppable and amazing superwife who will use the time you’re at chemo to clean and decontaminate the entire house, change your bed sheets, and even bring you lunch.

The place that you’ll be going to receive treatment is called an Infusion Center. Most larger hospitals will have one, and it’s basically a big room full of chairs with IV stands next to them. I’ve only been to two infusion centers, but both of them put “relaxing” images on the ceiling for you to stare at.

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This means something

Your day will probably start by receiving what are called “pre-meds,” which are things to keep you hydrated and prepare your system to receive the stronger medications to come. You’ll know when you’re getting the strong stuff because the nurse will suddenly appear wearing a decontamination suit, and the IV bag will be covered in a brown wrapper with toxic symbols on it. The nurse will also likely need you to confirm your name and birth date before giving hooking you up to the stronger medicine.

As a side note, if you ask the nurses how long a days treatment will take, you’re almost certainly going to want to add about 20% to whatever they say. It’s not their fault, they think of time in terms of how much each “bag” takes, and just add that together. They typically don’t include the time between bags, or the extra time at the end of each bag as some of them tend to need a few extra squeezes to complete. If you’re told that your treatment will take four hours, you should probably plan on closer to five.

Once all of your medications for the day have been given, you’re free to go. Your treatment will of course have side effects, and I’ll talk about some of those in a future post.

Depending on your individual side effects, you’ll almost certainly need someone to drive you home. If you have more medications scheduled for the following day, you’re going to want to leave the port hooked up, as this will be easier than getting it hooked up again the following day.

I hope this was at least a little bit helpful or informative. If you have any questions, or if there’s some information I’ve forgotten please feel free to let me know.

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Warning: Chemo does not make for the most flattering photos.