I am taking that as a message from a bit higher authority: Focus on treating the cancer and getting back on my feet. God will take care of the rest. I needed that, I’ve been a bit depressed about the whole thing. Time to stop being depressed, there’s work to be done.

While I was waiting, I received a call from a person with the Oregon Work Incentives Network. As regular readers know, I’m a blind guy, and I’m unemployed. I’m on just about every public assistance program out there, and I don’t want to be. I just want a job, to live where I want, and to pay my taxes like everyone else.

The problem is that if you are in public housing, getting a job that pays a little, but not a lot, disqualifies you immediately from the subsidy, but doesn’t guarantee you enough income to afford the “market rent” (which is 120% of what a similar apartment in the same place would cost). That means an entry-level job could make you homeless.

This is so ridiculous that there exist work incentives to help people with disabilities get out of such situations. The problem is, these apply to HUD and Section 8 housing, but do NOT apply to “Project-based Section 8″, which is operated through HUD. So basically, I can’t just “get a job”, unless of course I am prepared to move immediately upon accepting one.

The regs say I have to report changes to my income (such as employment) within 10 days. I happen to know that they cannot change my rent without 30 day notice, regardless of how it changes. If I read the rules creatively, technically I don’t have to report a change in income until 10 days AFTER it changes, i.e., after I receive a paycheck, at the latest.

This might be workable, here’s how: They cannot raise my rent the following month, because I must be given 30 days’ notice. And if that notice were to fall on or after the 3rd of the month, it would take effect a full two months later.

It kind of makes me feel a bit sick to have to play these kinds of games with the government. I feel a bit like I’m trying to cheat the system. But the fact is that I have $714 of “income”—that’s your money, not mine—and every cent of it is precious as long as the amount of income I have, and am allowed to earn, is strictly regulated in such a way to ensure that I really MUST remain where it is safe—sitting on my rear end, while you pay me not to work because I’m blind.

If you ask me, dealing with the cancer is easier than waking up every day knowing that I am a freeloader, and that I don’t really have a lot of choice in the matter.

I fear this may be getting off too far into politics (something I have said from the beginning would not be the purpose of this blog), but if you have an opinion on this, feel free to offer it. I ask only for civility.

Then down to brass tacks. What did the MRI’s show? I’ve been waiting for that answer now for a week. Probably nothing, but maybe there really is something to worry about?

The only way I have found to mitigate this kind of anxiety even a little is to pray and to trust in God. Whatever result there is, it fits his plan. He never gives us more than we can handle—though sometimes I sure wish his estimation of my abilities was nit quite so high.

I could use a few prayers right now, if any of you, my faithful readers, can spare a moment to offer them. Thanks!

I recently learned that Theresa is presently in Palm Springs…fighting a type of cancer that appears in bone marrows. If you would be so kind, please pray for her.

Thanks guys!

These scans were of chest and pelvis. I have a soft tissue sarcoma, and these tend to spread to lungs, if they go anywhere. And if they do, usually the only option is chemotherapy, which doesn’t work a lot more often than it does. And if the chemo doesn’t kill the cancer, the cancer is likely to kill you. (It’s a little more complicated than that, but that’s the simple breakdown.)

Now, I’ve come to terms with the possibility that my life could be a lot shorter than I ever intended. I’ve accepted that as long as I have the opportunity to do what God has put me here to do, that it doesn’t matter if I live 35 years, 53 years, or 105 years. And I am doing God’s work while I can, so I’m on the right track there.

The problem is that the scan was Wednesday, and the doctor is going to tell me what the results are next Tuesday. It will be just about a whole week between the scans and the doctor telling me about the outcome—of course they’re not going to release the results to my electronic chart until I see the doctor. It doesn’t matter that I’m quite capable of reading the report for myself. I don’t care what the results say, I just want to know what they are!

I’m praying for peace in my heart until Tuesday, and I’ll ask you to join me in that prayer if you will. I’m also keeping busy with all the other things I am doing right now, and I really do have other things to be worrying about right now. (Like the hosting for this website, which was just billed last night—if you can help, I’d sure appreciate it!)

The waiting game is the most obnoxious part of this whole cancer thing and has been since the beginning. The cancer itself was scary and all, but I could handle that. The pain was significant, but I managed. Recovery from surgery was long, but I was patient. Waiting for tests and results though, that was hard.

How do you cope with waiting for results? Even if they’re not life and death sorts of things, I’d like to hear from you!

But I knew that it was still going to be hard on her. It’s not exactly easy on me either, and I am a lot better at keeping my head when faced with tough situations than most. So I got it in my mind that perhaps I should consider a support group for the two of us. There’s got to be something like that, right?

Sure enough, there are tons, most of them pretty specialized, but they all had a medical mentality in common. These are generally run by licensed social workers (not licensed counselors), and what I found out was that most welcomed “patients” but not “caregivers”. Yes, they actually use those words to describe a person and their loved ones! How degrading and condescending can you get? I get enough “patient” and “care” and “experts” who “feel my pain” as it is, right? Clue to the medical profession: I don’t want you to “feel” my pain, I want you to make it go away. I bet you can see where this is going already.

One group did say that “caregivers” are welcome, so I talked Katie into going. We went, and the room was pretty full of about twenty people and two social workers. Because three of us “patients” were new, the entire 85 minutes or so was spent going around and having people tell what their name was, what their diagnosis was, and what caused them to come to the group. A couple of times, people tried to respond to something another person said, but they were reminded that we don’t discuss what other people have shared, because that could make somebody feel bad! There was one exception to that, but I’ll come back to it.

You see, not only was this group not exactly “supportive”, Katie and I were told upon arrival that “caregivers” like her were welcome to come to the first meeting to “support the patient”, but were asked not to return because it could negatively affect the group’s dynamic! I got a turn to speak, but Katie was given the opportunity to say about three words the entire time. Worse, because she’s much more empathetic (a tendency to be a feeling vs. thinking person), she developed some attachment to the group where I didn’t.

Now I’m sure by now you can guess the one time someone was allowed to speak about something another person said, it was directed at me—a criticism of my faith in God to get me through this or make sure I live long enough to do whatever he put me here to do! Yes, the one time anybody was allowed to even acknowledge something another person said, it was an attack on my Christianity. And there was no rebuke from these two social workers either!

Katie is in a counseling graduate program. She said that if she had handed in what she observed as a group counseling proposal for an assignment, she’d have failed. I could only say that she would have deserved to fail if she thought that group was in any way helpful.

This leads me to my point: If you are Christian, and you need support when facing a major trial like coping with cancer (yourself or a loved one), it’s got to be Christian support! Nothing else, and certainly less, will help you face what is happening with trust in God. They cannot do it, because they cannot understand it. At best, a non-Christian will excuse your “vain hope” that some mythical spaghetti monster will magically cure you as a way of coping with the very real possibility that what you’re dealing with is cancer—and cancer kills people!

Christians know things here that non-Christians just don’t. We know, firstly that we aren’t just holding out some vain hope for a mythical being. We know that God’s out there, that he’s listening, that he loves every single one of us, no matter what we’ve done, and that he wants us all to find our way to him. We get that. Most of us understand that we have free will, and that the important thing is that we choose him over the world and ourselves. Many of us understand that God allows bad things we do to ourselves, and sometimes other bad things as well, but that he will turn every bad thing to goodness if we will but cooperate with him. A brief flame may burn brightly, tragedy may be a catalyst to prevent future tragedies, that sort of thing.

We understand these things, but people who do not share our Christian faith simply cannot understand these things. Even if they do understand them, they cannot accept them, because accepting them first requires accepting God, Jesus, the cross, life in the hereafter, God’s grace, and even to some extent what might be called the economy of Heaven. This is not something they are prepared to do.

If you want support as a Christian, then you need support from a group of Christians! Such a support group can open and close with prayer without offending anyone. We can actually discuss what God is doing in our lives, as well as the difficulties we have. We can pray for each other. And for the love of God, we can accept that things like cancer affect those around us as well as they do ourselves. Sometimes, those people need support as much as we do.

With two Catholic hospitals in this city, both of which offer cancer treatment, does it surprise you as much as it does me that nothing like that exists? Truly, I cannot even find evidence that anybody has ever tried to start such a thing. So I am trying to do so, because I think it needs to be there. And I think this is how God is turning what could be tragedy for me into hope for others.

What do you think? I’d love to hear from you on this one!

Emblem of the order

While I generally try to keep my politics out of this blog, I need to approach the issue long enough to say that the Catholic Church is far from united even on those political issues that fit the work God has called upon us to do. Some Catholic organizations lean a bit either to the left or to the right, politically speaking. Since I first learned of the Knights of Columbus as I was preparing to enter the Church back in 2006, I’ve never heard a single person complain that the Knights leaned either direction. They lean to God. I know that sounds corny, but they do.

Even before I entered the Church at Easter, 2006, I was very excited by the Knights of Columbus because I have known of some of the good work they do. Each Knight I’ve met has shown a nobility and a dignity that I admire. Moreover, they have been strong in and proud of their faith.

But I knew I wasn’t staying in Eugene, so I didn’t try to get involved then. And then until I got to Portland, I would not really have had access to the Knights to consider getting involved. When I did settle, I asked my priest about a year ago if he knew who to talk to. He didn’t, other than that there was a Council in Beaverton.

So a couple of weeks ago, it just happened that I could not attend mass at St. Michael, so I went to the evening contemporary mass at the cathedral. There it was mentioned that the Knights of Columbus were trying to establish a Council at the Cathedral. Anyone interested was welcome to join them to learn more about it. I entered as a stranger, knowing nobody in the room and only a bit about the charity work the knights do. I left a proud brother, having attained my First Degree.

The Knights of Columbus exist primarily to help the clergy. And do they ever need help—just ask some and they’ll tell you! This has a lot to do with why the Knights are seen so often staying close to God, because they do stay close to God! They are heavily involved with Church ministry. The fundraising they do is a means to that end.

If something needs fixing, the Knights of Columbus are happy to help fix it. If something needs doing, the Knights step up to do it. Knights take on responsibilities like confirmation classes, Bible study, charity, you name it, whatever they can do. You can probably see why I was so interested in the order.

But more than that, there are the things I didn’t know. The Knights of Columbus are a fraternal organization, and they take it seriously. Knights take care of each other, and if something happens to one of us, we do what we can to take care of that person’s family. We’ve got insurance programs (most of which I don’t presently qualify for, but not all of them amazingly enough), and there are some benefits that are there for me just for being involved.

Even better is that I get to tell you all about it today (okay, yesterday for many of you now), March 29th, which is Founder’s Day for the Knights of Columbus. On this day back in 1882, the Knights were first incorporated, after Fr. Michael J. McGivney called together a group of men to form the fraternal organization that is widely heralded as the “strong right arm of the Church”.

Even with everything else I am doing right now, I think I can make time for that.

Then one day, I had to be out and about pretty much all day. You gotta remember that I’m blind, so the only way I get somewhere is if I walk, take a bus, or walk to where I can take a bus. So even with just four or five errands to run, it was a day-long affair. After all of that, I noticed something: I felt fine! The trick was to keep moving and you can for the most part outrun the fatigue.

So this time around, I said to myself that was what I was going to do. Just before we discovered the new tumor, I was looking for work. I haven’t stopped looking, but it’s pretty clear that the paying jobs I could take are simply not compatible with riding a bus up the hill for a daily radiation treatment. Oh, the jobs are there, but they just cannot be worked around the radiation schedule.

So I had to find other work to do. And found it I did! That’s why I haven’t been updating—I’ve been running around too much to write anything substantial! Here’s what’s been on my plate the past few weeks:

• Testifying before Oregon’s senate healthcare committee about a bill to fund a newspaper reading service for anybody who can’t pick one up and just read it called NFB-NEWSLINE®. (Don’t ask me why it was in the healthcare committee, I can’t explain that one!)
• A weekend seminar for members of the National Federation of the Blind of Oregon, followed by a day of lobbying in Salem for improvement in education for blind students in the state of Oregon. I personally met with 11 legislators and the policy staffs for another six. Out of 90 total.
• Back to Salem a third time to testify regarding an Oregon house bill that will make it easier for disabled students to receive the education they are guaranteed under federal law, but too often don’t get.
• I had been a Precinct Committee Person within the particular political party that makes me want to throw things at my screen the least often—I kind of stopped being involved when I found myself with cancer, but I’ve gotten involved again.
• I’ve built up a small supply to satisfy basic needs in the event of any short term disaster or emergency on basically no budget. Not exactly ready to handle a Japan or a Katrina, but I’m far, far ahead of 90% of everybody else at this point. And again, I did it with literally no budget. Just a careful eye on sales at the supermarket.
• Working with the Diocesan Office for People with Disabilities to utilize modern technology to help with the Mass, studying scripture and our faith, and entering the Church.
• Working to establish a Christian support group for people affected by cancer. This too deserves its own post, but I’ll just say that the need for it is immense!
• Going through the process at OHSU to become a volunteer so that I can meet with Christian patients and pray with them. I’d also like to be able to bring the eucharist to the Catholics, if I can assist the nearby parish priest by doing so.
• I’ve joined the Knights of Columbus, which is trying to start a new Council at the Cathedral. I’ve wanted to be part of KofC since before I formally entered the Church, and that almost deserves its own post!

See? All of this is possible. It is possible for a person battling cancer, facing daily radiation treatments to do the same kinds of things a normal person does. In fact, even a blind guy battling cancer (again) can do all of this. I know it can be done, because I’m doing it. (I did have to miss one day of radiation for one of those Salem trips, but we’ll make it work.)

All my life, I’ve been told by people with little imagination and littler expectations the things I can’t ever do. This is the curse of blindness (what, and you thought it was not being able to see?) All my life, I’ve been answering “you can’t” with “watch me!” Why should that change now when “you can’t” is as much about the cancer as it is about my vision? Watch me! I’ll do what I need to do, because things need to get done and if I don’t, nobody else is going to do them for me!

Yeah, I know it’s a polarity response. I didn’t get a degree in Psychology and enter the Church with a godmother who worked as a nurse in adolescent substance abuse treatment for a few decades without learning what a polarity response is and that after three decades mine’s pretty well hard-wired. That said, I have been learning to use it, and use it well!

The truth is that we can do anything we set our minds to, for good or for ill. If we seek to do what is right, God can help us accomplish it, or something else just as important. If we seek to do what is wrong, well, I can’t recommend that, y’know. But whatever we set ourselves to doing, it can be done if we’re determined that it will be. God has a way of reminding us of that when we need it.

People often don’t have any idea what they can do. That includes me, actually. If you told me a year ago that what I had was cancer, and that removing it wouldn’t be the end of the story, I would have told you quite sincerely that I didn’t think I could handle it. God knew that I can. Today, I know it too.

I still don’t know whether the time I’ve got left on this mudball full of crazy people is measured in days, years, or decades. None of us do. But if I can do the kinds of things I am doing right now, I am making these days matter. What else could a person want?

If you have cancer, and even if you don’t, do yourself a favor and make today worth living. You can do that, if you’re determined to make it happen.

What is this blog about? It doesn’t take long to figure that out. It’s about cancer—fighting it, living with it, and getting beyond it, all from a Christian perspective. So sometime last fall, at the suggestion of an online acquaintance, I added Google AdSense to this blog to help pay for the cost of this thing—a relatively paltry $120 per year. The thing is, nobody clicks on the ads. It’s not hard to see why not!

I have yet to see an ad directing you to a worthy place to donate to cancer research or to help out people with cancer. I never saw any Christian ads, not even some site selling Christian books and the like. The only ad I ever saw even remotely related to this site was one for some crackpot miracle cancer cure snake oil which looked so completely ridiculous that it didn’t even have a faint whiff of legitimacy one would associate with a decent scam! And it’s not like the unrelated ads have been much higher quality, either. The whole thing has just made this blog look like a cheap attempt to make a buck, and I’ve never really intended to make anything on this site (which is good, because I haven’t!)

I dunno how long I can keep this site up—I’m not going to actually have a job at any point during radiation (they just cannot schedule a time for me to do it that would allow me to work any job that’s currently hiring in the area), and the cost of the hosting is only paltry when you’ve got the money.

I’m looking into an alternate hosting arrangement for now, but if I can’t arrange that, I dunno. But I think I’d rather request donations to keep this site up and running to even one more day of prostituting myself and my blog to Google and their increasingly disagreeable ads, partners, and increasingly invasive business practices. This blog, while generally just my own ramblings, is about something.

As for not writing about other things, I owe you all an apology. It’s not that there has been nothing to write, so much as it has been that I’ve had so much going on that I have not had time to write anything coherent. I’ll make some time for an update tomorrow.

Yesterday, I got bad news. But it’s not the worst possible news. My scans show nothing that looks like another tumor. But microscopically speaking, the second one is so much like the first that you just can’t rule out the idea that I’ve had my sarcoma metastasize.

You can’t prove a negative, so you kinda have to decide how you’re going to treat these things. If you’ve got a good cancer team you can trust, the advice they give is likely prudent.

I guess it could be pretty scary just not knowing one way or the other. A lot of people have been asking me if I was anxious about this test and its outcome. Not really, because once I knew I has a second tumor, the implications of what that could mean were pretty clear. From there it didn’t matter much, because they can’t prove one way or the other what the deal is here.

The real question I have to ask myself is whether or not I trust God. Do I believe he has a plan for me? Do I believe I’ll have the chance to fulfill that plan no matter how short or long my life lasts?

Yes, I do.