Life after cancer

On July 27, 2010, in Uncategorized, by Joseph

It may seem a little silly to be thinking of life after cancer, but that is what I am doing now.

A picture of a rope bridge suspended high amongst trees in GhanaThis bridge looks as if it spans a wide gap in a forest canopy, used by some people who life high in the branches of some novel, either of SF or fantasy genre. It exists in Ghana today, as this page will tell you. It looks breathtaking, even in the photo, so I can only imagine what it would be like to have been standing there!

Perhaps I need not imagine, though. I don’t really have money for travel now, and I don’t know why I would go to any part of Africa, but who knows about later in my life? If the page this image is from is to be believed, I could do far worse than to travel to Ghana if I were going anywhere in Africa. If not, well, the world is filled with wonderous things, and I doubt most of them are that far away.

In fact, there’s probably more than a couple such things within easy travel distance from where I am right this minute. The same is probably true of you, my dear readers (all three of you.)

My advice is that you don’t wait until your life is threatened to find the wonders you didn’t even know about all around you. They’re there, if you’re ready to find them. Even my brief battle with cancer was a nightmare. I am fortunate that it has ended with healing so that I may contemplate travel around the world, or even around the block.

Each day might be your last, cancer, disease, virus, or even some idiot who isn’t watching where they’re going (including yourself!) Aside from the obvious questions of religion and conscience, I ask: Are you existing, or are you living?

 

Recovery basically sucks

On July 21, 2010, in Uncategorized, by Joseph

So I’m 14 hours away from being home and settled now for a week. You know what? In that time, I’ve been largely less active than I was in the hospital. I haven’t really done much walking around even, and this wound vac has been giving both me and my home health nurse complete fits. It’s a combination of my reaction to adhesives and the location of the wound. It’s just hard to keep a good, solid seal, especially given that what moving around I am doing is putting more stress on it than anything I was willing to get attempt in the hospital.

Now with my complaining out of the way, I can report the actual good news: The pathology report came back, and the sarcoma was 10cm across, easily at least double what it was back on the 21st. Why’s that good news? Well, they cut out a whole lot more chunk of Joseph than that, and the margins are microscopically clear. Truly, that is blessed news—they got it all! There will likely be some discussion tomorrow of radiation to ensure that they didn’t miss anything, and of course there’ll be MRIs every few months for the foreseeable future.

So now what? I’m basically home-bound while I’ve got this wound vac, but after that?

To answer that, I need to take a step back and explain something to those who don’t follow politics. I keep an eye on several commentators and pundits of various political spectra. Among them is Glenn Beck. If all you know of Glenn Beck is that he’s the loudmouth with the chalkboard and picture magnets, I’ve got to explain that he is a recovering alcoholic who freely admits he did pretty much every horrible thing you can imagine before he finally called out to God to literally save his life. No matter what you think of his politics or his theories about what’s happening, that’s pretty much established fact, and the only one that matters here.

Well, there’s another: Glenn Beck loves to read. It’s probably fair to say that the man reads more an a day than several of his biggest critics likely do in a week. That’s no insult, either—he just reads that much stuff in a day. That’s important because at an event this weekend, he told the audience that he has learned he may be losing his vision. In fact, he could be blind within a year.

Mr. Beck’s reaction to this, other than to affirm his love of reading, was something only a recovering alcoholic is likely to truly understand. He said that his eyes are not his own. He is fortunate enough to have been able to see his wife and children. If God needs his eyes, he can take them. His eyes—his life—are not his.

Having myself some vaguest hint of what it’s like to lose vision (it happens every time I step into daylight), I can only say that Mr. Beck may face a very hard road in the months and years to come. Having enough early memories of a violent, out of control alcoholic, I know the road he’s already traveled to be as hard or harder. I offer Mr. Beck and his family my prayers, because he sincerely needs them.

I had to go there for a moment to make sure that we’re clear what I am saying here:

My life is also not my own. I should have been dead or worse a dozen times over by now, were it not for the grace of God. Aside from a brief dabbling in half-hearted espousal of faith in a failed attempt to fit in somewhere as a child, I’ve spent much of my life doubting that God, should he exist, cared even the slightest for the likes of me.

As the pieces have begun to fall into place, I have begun to see the picture of who God has made me, and how. Why remains largely unclear, but that there is a why is certain. My eyes, side, leg… My body, life, and soul… These belong to God, for his purpose.

Sarcomas are rarely declared “cured”. The best you get told is that there is NED, no evidence of disease, as if you’re supposed to nurse some tiny seed of doubt in the back of your mind that the sarcoma will come back some day. I do not have that fear. I have faith that the sarcoma is gone, because I know that God is not finished with me yet. I think that if I do not stray too far from his design for me, my life will be rich and full, no matter when or how it ends. And so I pray that I may have the wisdom, the strength of will, and abundant grace to stay close.

For now, I am working to take a little bit better care of this body that is not my own to abuse. From there? We’ll see when the wound heals up where I am called.

 

A new invention

On July 13, 2010, in Uncategorized, by Joseph

Picture of an iPad attached to a strap in such a manner that it can be viewed hands-free in a hospital bed and operated using a wireless keyboard in the lap

The world's first necktop computer?

I just know this will become the latest thing for bed-ridden hospital patients (or just those too lazy to sit up in bed or in a chair. To order yours call 1-555-484-3565 now! That’s 1-555-4-THE-LOL!

 

There’s only one road…

On July 12, 2010, in Uncategorized, by Joseph

Nobody ever said the road to recovery was free of potholes. In fact, you can probably bet on finding speed bumps, lousy pavement, and the odd meteor crater in addition to the potholes.

It seems the area of my incision may be infected. If so, my plans to be discharged and head home in the near future are probably shot for the time being. That would be a bit of a bummer, because I was looking forward to going home in the morning. That’s unfortunate.

Unless it’s not. I really don’t think this is anything like part of the tumor was missed and is regrowing, but what if it were? It would be very good to know that now, rather than in a few weeks, wouldn’t it? Of course, it doesn’t feel like that, it feels like an infection. I just thought this little scratch I’ve got had become infected is all. If it is, we’ll know soon enough, and we’ll hit it hard with some antibiotics.

I trust that if I’m supposed to stay another day or two, God knows why. I’ll trust his judgment. Until then, it is already in his hands, so there I leave it.

 

No man is an island

On July 12, 2010, in Uncategorized, by Joseph

I wasn’t really sure I wanted to write about this or not before, but I think I really ought to. Fair warning that I’m going to be bouncing around to various topics and points—it’s pretty much how my mental process works.

When I first was admitted to the hospital, we were in the middle of a heat wave, and so the hospital was completely booked. Those of us coming out of surgery were overflowing into the post-op area, and there was some worry at the very start that we might have to sleep on gurneys if they couldn’t find beds for us. They did.

But there wasn’t much privacy as we were in the pre/post op ward, and there were three (and then four) of us in the same sizable “room” (with only three walls). I got to meet two other patients as a result. They were Dennis, a contractor who broke his arm in a manner requiring some metal hardware, and Brian, a student of Psychology working on his PhD who had a tumor in his neck and will have lost some nerve control in his face. It was certainly not a good time for any of us, but it worked out well enough I suppose.

I haven’t actually had direct contact with another patient since I moved to the oncology unit. Other than a few hospital-type sounds, I’ve only heard one nearby patient. I’m praying for her. Of course, this is the oncology unit, so if she’s here she’s got some kind of cancer.

When I heard her, she was talking on the phone, quite loudly. I note the volume only because it’s pretty close to the normal “speaking” volume of my family. I began learning as an adult to moderate that, and other members of my family are learning to as well. It’s made a big difference for us. In a nutshell, we now have the opportunity to speak with one another, instead of casually yelling at each other all the time. I don’t know if I’ve ever realized how much the ability to do that has meant to me.

Anyway, as I said, I am praying for this other person. Two reasons. First, when I first heard her on the phone, she was berating someone (spouse?) over his lack of understanding of how to access her personal bank accounts, not held jointly. She discussed the holder of the account, her PIN, and the amount of money in the account (which was significant), all in the space of 20 minutes, loudly enough that she may well have been in the room with me. Being concerned with data security as I am, that is alarming. She gave enough info that a bad guy could probably empty those accounts without extraordinary effort.

The next time I heard her, the man to whom she had been speaking was visiting. He also spoke loudly, but kindly, and with concern. She was accusing him of several nasty things, just about all of which one who had heard what I had and no more may readily say applied more to her than to him.

There is some discussion in Catholic circles, where we believe that we are responsible for the sins we commit after our baptism, that circumstances can make a person not responsible for what would otherwise be sinful behavior. The most fundamental thing that defines sin is choice.

If a person’s actions are the result of mental illness or brain damage or some other thing like that, we have to ask ourselves whether or not they really had a choice. While the finer points can be debated by theologians, priests, and religious scholars, we can pretty easily consider the general case and conclude that possibly, they are not.

So I pray for this woman, whose name I do not know. I pray that God protect her from her own actions, and those who would exploit her. I pray for complete healing of body, mind, and soul. And for both her and her significant other, I pray for clarity, understanding, patience, endurance, acceptance, and joy. If you would agree with these prayers, please add your voice in saying Amen. (You don’t have to say it out loud or even believe there really is a God. Just that if there is, that what I’m asking for is a good thing.)

Besides, she’s an iPhone and iPad user, so even if she were some kind of ogre she couldn’t be all bad, could she? ;)

On the local front, they are beginning to discuss me leaving the hospital as soon as tomorrow. I’m building a list of things that need to be done or verified before I can go home. I may be off to a skilled nursing facility for a time while I am healing if we cannot be sure that I can take care of myself, living alone as I do. Your prayers that all of the right things do happen before I am discharged, and that when discharged I may be able to go directly home are appreciated.

Thanks everyone!

 

Battle Scars

On July 10, 2010, in Uncategorized, by Joseph

First, I need to apologize for the delay in writing. In our last episode, I was being hauled off to surgery. The sarcoma was growing out of control, and I swear the external part of the tumor was larger every single time I changed the dressing. Thank God he kept me sane though that, because it was only by his grace that I didn’t totally lose it.

Keep in mind here that I went from a “very unusual cyst” to a rapidly growing high grade stage 3 cancer that is extremely rare and that Wikipedia erroneously reports to mean a prognosis of less than 5 years to live. (Good thing I didn’t look to Wikipedia for medical info and advice eh? I’ve got relatives who did, though!)

The doctor cut a sizable chunk out of me—17cm x 15cm x 15cm! That’s just over six and a half inches by almost six by six more. That’s gonna take some recovery time! And yet I was standing within six hours of surgery (if really carefully!) and had developed a hearty appetite.

It’s now Saturday night and I can do many large movements, though carefully. I’m not yet convinced I would be able to care for myself upon my release from the hospital, but recovery seems to be happening at the same rate as the illness. Thanks be to God for that!

The battle isn’t over. Potentially far from it. We still need pathology results on the tumor and then we have to make decisions about what’s next. I may be passed the worst of it, as far as the sarcoma goes, though, and I will hold out for that now. God didn’t see me through all I have done to die of cancer at age 32. I have faith.

 

I’m goin’ in!

On July 7, 2010, in Uncategorized, by Joseph

On June 23rd, I learned that something wasn’t right with this “cyst”, and what was growing in was kinda strange. On June 24th, I knew something was wrong, and was told it probably wasn’t cancer, but it was very unusual, so they were running tests. On June 28th, I was told that it in fact WAS cancer, and the tumor was about 5cm across, maybe a little bigger than it was on the 24th. We asked for a consult with an oncologist, and I was referred to one at OHSU. By the 26th, the tumor was growing out of its little exit hole.

On June 29th, the tumor was measured at 7cm, and I could feel how big it was because of where I felt pain. Additionally, the tumor had filled the drainage hole completely a week ago, and was getting bigger literally every day.

Nerve-wracking, isn’t it? Apparently, once a sarcoma gets itself a supply of yummy blood to feed upon, it grows! This is apparently the reason why the sarcoma team divides these things unofficially into “small”/”low grade” and “not small”/”not low grade”, even though there are other distinctions in the not group. They just don’t matter, because the things balloon.

Given that this isn’t exactly easy on the nerves, is pretty painful, and care for the wound inevitably gets harder, it was a pretty good idea to talk them into getting this thing out of me as soon as practical. Nobody’s said, but I think I know, that once it starts growing a lot, there’s probably more risk of the cancer spreading to other parts of the body (ie, stage 4).

So, my surgery is tomorrow, I check in at 12:00 noon PDT (-0700). I’m goin’ in, and this sucker’s comin’ out.

I actually expect that after the first hours of recovery, I’ll be in less pain than I have been. Looking forward to that. It seems from the doctor’s examination by touch that my tumor is pretty much subcutaneous. My own sense of it is that he’s right. Hopefully that means the tumor mostly grew in the direction of least resistance, which is out through the hole. I’m going to have one incredible scar from this thing.

A scar, and a life that has changed forever. Amazingly, most of the change has been for the better, though I could do without the need to pop pain pills any time God’s ready to lift that burden from me. (Hint, hint, hint!)

 

A message from God

On July 3, 2010, in Uncategorized, by Joseph

A couple of months ago, I bought this book for Mary at a white elephant sale at St. Michael’s. Mary has a great love of books, particularly spiritual books, and even if she had a copy of this one, another would not be unwelcome, because she could give it to someone else who needed it.

At the time, I didn’t have a lot of cash. But the white elephant sale was winding down, and so they decided to declare everything half-off, in the hopes that they’d have less to carry out. I decided then that I must get it for her, since it would now likely be just a few dollars. The price quoted? Fifty cents.

I had intended to get it to her a couple of times between then and now, including Tuesday, but hadn’t managed to do it. I did give it to her Friday when she and Mary Kay came up to help out a bit in my apartment. After that, I had an uncomfortably long MRI, and then after they’d gone back to Mary’s place, a bit of a scare regarding the holiday weekend.

The message? It’s in the book and the timing of all of this. On July 2nd, the meditation is on illness. The first part was on the anointing of the sick, why we do it, and what comes from it. That was for me. The second part was for those who care for those facing serious illness. That was for the Mary’s.

God put that book into my hand, and made sure it got to Mary exactly when it was time. If there’s any doubt, July 3rd talks about St. Thomas the Apostle, faith, and Tom’s dual confession of the risen Christ, “My Lord and my God.” Yeah, “Doubting” Thomas seriously needs a better publicist.

Thomas is my first name, if you didn’t know that, and my own conversion is an echo of his.

 

Get well Paige!

On July 2, 2010, in Uncategorized, by Joseph

This is going to require a little explanation. I used to be pretty involved with iPhone jailbreaking. That’s the process of setting up iPhones and other similar devices to run software Apple doesn’t approve of (but seems to peruse for ideas when they need new features every year, all the while trying to stop us from doing them!) One day, Paige shows up to become an active part of the same community.

Based on what Paige told me of her work at Apple, and some of the things she did that I clearly misinterpreted, I got a little concerned about what it seemed to me that she might be doing. This concern blossomed to mistrust, and the whole thing escalated out of control. We hadn’t had a civilized exchange in almost a year now.

I learned recently that she had surgery some time ago for a brain tumor. I learned that it was in remission for the time being, but that it was going to kill her at some point. I also learned that she was still carrying a lot of anger and bitterness toward me.

A couple of nights ago, she apologized for her part of the whole thing, and tried to bury the hatchet, so to speak. I told her that it was all water under the bridge, and we both have bigger things to worry about. But it occurred to me after we spoke that I never offered an apology for my own part, and I believe I owe her that.

I just learned that some time that could not have been very long after we spoke, she had a seizure and was hospitalized. A few hours ago, her condition was “upgraded” from critical to coma, and the latest I’ve heard is that they’re moving ahead with a surgery to relieve pressure on her skull in the hopes that she’ll be able to recover more easily.

Part of me wonders if she maybe knew that something like this was coming, and wanted to settle some affairs so that she could concentrate on fighting this thing. If so, I’d say she’s going to fight pretty hard.

0When the diagnosis finally hit home, it occurred to me suddenly that a lot of the things in my life just weren’t very important anymore. That went for a few of the “positive” things, and nearly all of the “negative” things.

You’d think that when I was told I had cancer, my anxiety levels would’ve shot through the roof. They didn’t. Somehow, I intuitively knew to take stock and stop worrying about the things that didn’t really matter anymore, probably before the shock wore off. By then, the net result was that my anxiety levels had gone down, not up. I’d eliminated more worries than the cancer created.

My advice? Don’t wait until you are forced to think about this kind of thing. Do it now. The result will be a more peaceful and happy life, without the added risk of potentially having less time to enjoy it.

Get better Paige, we’re all praying for you.