Oxygen is Good

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.

 

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.

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.