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.

 

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.

Left Leg: Left Message

Over the past week, I’ve started having pain in my left leg. This isn’t the leg that started the whole mess, and as far as I know my cancer hasn’t metastasized to that leg. Our best guess has been that the pain is being caused by my white blood cells being repaired due to my treatment.

That doesn’t lessen the pain, however, and it had been getting worse each day. By Friday night of this week I was taking more than my usual amount of pain killers and was still in so much pain that I could barely sit with my kids for our weekly movie night.

I woke up around one in the morning with my left leg feeling like it was being torn off, and moved out to the living room to let my wife sleep in peace while I grunted and groaned. I finally decided to call the non-emergency line for my doctor’s on-call nurse, to tell them what was happening and see if they wanted to schedule some tests for this other leg.

The first time I called, the automated system hung up on me.

The second time I called and managed to leave a message. I got a call back within two minutes, from a different doctor who told me he had no idea who I was or why I was leaving him a message at one in the morning.

The third time I called and left another message; As far as I know this one went to the right place. I took more pain killers and stayed up until about three thirty, then went back to bed once the pain had subsided.

When I woke up this morning, the pain was gone. Not lessened, just gone. I have no idea what caused the pain, or if it’s going to come back, but for right now it seems to have gone away. I’m scheduled to meet with my oncologist first thing Monday morning, so maybe he’ll have an idea just what the hell that was all about.

The Way Things Is (as of September 27th)

Things are going about as well as can be expected at the moment.

As of my last PET scan, all of the visible cancer has been eradicated except for the original spot in my right femur. The fact that this spot hasn’t been taken out by my chemotherapy worried the oncologist enough to change my treatment regimen. The new drugs are much more powerful, and are causing a lot more fatigue than I’d had previously. For a few days after my treatment started, I was barely able to get out of bed. At one point I tried to play a video game and found that the tips of my fingers were too fatigued to work correctly, which was a surprise.

My legs and hips are in a lot of pain, but I have medication to help manage it. I am getting a bit concerned about the amount of pain medication I’ve had to take lately, but I’ve always been paranoid about prescription drugs. I’m currently taking between 10mg and 30mg of percocet each day, so we’ll see how that effects me long term.

Psychologically, I’ve taken a bit of a hit lately. I’ve been able to keep up a pretty positive attitude about all of this, but a recent talk with the staff who are managing my bone marrow transplant shook me a bit. The doctor casually mentioned that the transplant means there’s a 10-20% chance that I’ll be dead before Christmas, which something of a shock. He later walked it back a bit, saying that those numbers included all transplant patients, and I was on the younger and healthier end, but still… those numbers aren’t something I like thinking about.

My next round of chemotherapy starts next Monday, and two weeks after that I’m going in for more PET scans and tests. The results of these tests will determine whether or not we can proceed with the transplant, or if I will need to start a new chemo regimen with the addition of radiation therapy. I should know a lot more then.