As usual, there have been some drastic changes lately.

I came into the hospital last Saturday, in the hopes of refilling my painkiller prescription. I had stupidly forgotten to do that during the week, and the only way to get a refill during the weekend is to check in with an actual doctor. When the doctor saw me, he looked at my fever of 103.3 degrees, and decided that I wasn’t going anywhere.

So I was admitted on Saturday afternoon, and a couple of other issues were quickly noticed. For one, I appeared to have something in my lungs. Even worse, my right eye, which I’d been having trouble with since my hip surgery, appeared to show something in my brain pressing on some nerves.

After four straight days of tests, including my very first Spinal Tap (aka Lumbar Puncture), it’s been determined that my Lymphoma has spread to my lungs and into my brain. That second part is pretty bad.

My reaction upon hearing the test results.

So. Our current plan – and I emphasize current, because things change at the drop of a hat around here – is for the following:

I will be taking a new, somewhat experimental drug to deal with the existing cancer in my legs, lungs, and basically everywhere else below the neck. This will be just like my old chemo regimen, only stronger. One treatment every three weeks, and then keep an eye on the potential side effects.

I will also be travelling to the Plaza location of the hospital (which I do not have fond memories of), for an additional treatment. This one will be twice a week, and it will consist of a special drug being administered through Lumbar Puncture.

So, to repeat, that’s two Spinal Taps for me each week for the foreseeable future.

My doctors have been supportive, but they’ve also been getting grimmer and grimmer. I’m going to be honest and admit that things are getting pretty serious. The fact that the cancer has entered my brain is about as serious as things can get, and some of my doctors have even suggested I consider just taking it easy, making sure I’m comfortable, and spending the time I have with my family.

I can’t do that.

I don’t mind dying, I truly don’t. I’ve had a great life, certainly a better one than I deserve. But have you met my kids? Have you seen how amazing they are? I’m not leaving them. Not yet. I have lots more to teach, and they have lots more to show me. No matter how serious this all gets, and no matter how many painful treatments I need, I am not giving up.

I’ve survived more, and worse, than anyone reading this knows, and I’m going to survive this. I know I keep a positive attitude, and try to keep things light-hearted, but I am a fighter, and I am going to fight this.

To help get information to my boys, I’ve started working on a series of videos entitled Daddy School, the first of which I posted late last night. These are intended for my boys, but anyone can watch them if they find them entertaining.

I’m also working on putting together a college scholarship fund for the boys, so that anyone who gets the urge to help can throw in ten dollars now and then. This is still in the works, but once it’s up and running I’ll be posting links to it pretty constantly and shamelessly.

This is a pretty crazy time, and there’s a lot going on. For all I know, the plan may change again next week. But for now, this is the way things are. If you have any questions, please feel free to reach out in the comments.

I’m out of the hospital and back home, with a fancy new metal hip joint and everything.

I was admitted early Tuesday morning, and had the surgery pretty quickly. I then woke up about ten hours later with a whole lot of new sensations and feeling like a cotton-headed ninny muggins.

Y’know how each hip joint consists of a ball and a socket for the ball to rotate in? If not, maybe go search google for “hips” and click on the first link that doesn’t have the word Shakira in it.

Anyway, it turns out my cancer ate away so much of of the ball of my left hip, that it was ready to crack any second. This explains all the pain I’ve been having in my left hip the past few months.

So my orthopedic oncologist destroyed that ball, and replaced it with a new metal ball joint. That metal ball joint will use the same ‘ol socket my hip has had all these years, because we haven’t spotted any problems there.

She also scraped out all of the cancerous material from the damaged joint, and sent it out for testing. We don’t have every test result back yet, but so far it looks like it an old dead tumor, and not new cancerous activity.

So I spent Tuesday, Wednesday, Thursday, and Friday at the hospital, working with both Physical Therapy (PT) and Occupational Therapy). Perhaps you, like me, did not realize that those were two separate things. But alas, they are, and they often want you to do the same exercise(s)  over and over again.

After four days of trying my charming best, and some light cajoling, KU finally agreed to turn me loose. Haley came and picked me up, and now I’m back in my wonderful little house with my wonderful little family.

I had a lot of meetings planned for this past week, that were wiped out by this emergency hip surgery, so I’m trying to get them re-scheduled as soon as possible. I’m sure I’ll have some updates to my scheduled by lunchtime Monday.

The pain isn’t too bad right this second, but if I move my hip in any sort of unusual way the pain reminds me that it is very important not to do that.

I missed blogging while I was in the hospital, and so I have a bunch of things I need to circle back around on. Things like Halloween, and the fact that my son Logan was selected as first chair for Trombone in the Kansas City Metro District Honor Band. That may sound like a bunch of gibberish, but trust me, it’s a pretty amazing accomplishment. We’re all so excited for him.

I think that’s everything for now, just wanted to try and get caught up with some things. I’ll hopefully have the time and energy to post more often this coming week.

Manamanah.

Doo do do doo do.

Oh boy, has it been a week.

I’ve been trying to post regular updates, making sure to put out at least a status update each Wednesday. It’s now very early Saturday morning, and this is the first time I’ve had the time or ability to actually sit down and write something.

Starting last weekend, I’ve been feeling more and more like something was wrong, internally. The pain in my left leg has come back, and is generally staying at its highest level. The good news is that if I really work at it, there are ways I can arrange my legs that will lessen the pain somewhat, but any kind of pressure (including walking) will immediately fire it back up again.

I’ve also been having a high temperature, and it kept creeping up over the course of the week. Over the weekend, it was in the 99s. By Tuesday, it was over 102. I called my oncologist’s nurse each day to see if there’s anything I could or should be doing for the fever or leg pain, and the answer has been to take Tylenol and increase my painkiller dose.

Finally, Wednesday morning, after spending three days sleeping two hours at a time with a wet washcloth on my head, I went into the Emergency Room. I knew there wasn’t much they could do, but my symptoms were starting to mimic what was happening when I had sepsis back in July. That infection nearly killed me, so I decided going to the ER to run some tests on my blood was the safe thing to do.

The staff at St. Luke’s East agreed with me and admitted me pretty quick. They took cultures of blood and urine and mucus to make sure there was no infection, and admitted me overnight for observation.

While I was still being admitted, I started getting phone calls from a different hospital, the University of Kansas. They’re the ones who are handling my bone marrow transplant, and sure enough that’s what they were calling about.

You can’t see my phone here, so just pretend I’m talking into my hand because I couldn’t find a banana

If you remember from last week’s post, scans had found hot spots in both of my legs, and we were holding off on the transplant until we could have an open biopsy to get in there and figure out what was going on. Well, throw that out the window. Now it’s been decided that they’re just going to move forward with the transplant no matter the results.

(Well, that’s not true… if they find a family of malignant Fraggles living in there, that might delay things by a few weeks).

They’ve already selected a donor (all I know is that he’s a 20 year old male, and his blood type is O+), and they’ll be getting him ready over the next few weeks. In the meantime, they’ve scheduled a veritable plethora of appointments for me. Over the next two weeks, I have every possible kind of test scheduled, as well as meetings with a psychologist, a financial planner, a social worker, a teacher, a Native American Shaman, a protocol droid, and Xanthos, the Zoroastrian demigod in charge of medical billing.

The current plan is to have the transplant around Thanksgiving. There’s still a lot of dominoes that need to fall the right way to make this all work, but it feels good to be making progress.

In the meantime, the fever has stabilized somewhat. It’s only gone over 100 degrees a couple of times since I was discharged, and the Tylenol seems to be helping. The leg pain remains a real problem; My oncologist keeps telling me to take more pain medication, so that’s what I’m trying. We tried out a few other painkillers while I was at the hospital – Morphine didn’t do much for the pain but did give me immediate nausea every time it was administered.  Fentanyl, on the other hand, worked great for the pain. The only side effect was that it caused me to sing an a capella version of Avril Lavigne’s “Girlfriend” to my very patient wife.

I’ve spoken with a pain management doctor, and I have an appointment one of these days to see about getting a Fentanyl patch, which sounds like it would be a big improvement.

Finally, one last thing…

I WARNED YOU THEY WERE TRYING TO TURN ME INTO A GOSH DANG HULK!

Yesterday was the day we’ve been waiting for for a while now, the results of my post-chemotherapy tests. If I’m cancer-free, we go forward with the bone marrow transplant. If not, we start over.

Anyway, we got the results, and they’re kind of a mixed bag.

The Good News

The biopsy of my bone marrow shows absolutely no cancer. This is great news, as the bone marrow is how the cancer was spreading and what was causing my pain. It’s also typically hard to remove from bone marrow, so it shows that the chemotherapy was pretty effective at getting it out of there.

Even better news is that they’ve found several 100% matches for my bone marrow transplant. This means that once we start the process, it can move forward really quickly. According to what we’ve read, other people have to wait months to find a donor, so I’ve been really lucky here.

Personally, I’m particularly excited about the fact that the type of bone marrow transfer I’m getting means that my immune system will be completely overwritten by my donor’s immune system. That means I can say goodbye to my Celiac disease, and probably some of my allergies as well, which is fantastic news.

The Bad News

Unfortunately, the results from my PET scan were less great. They showed “hot spots” in both of my femurs, which are areas of increased cellular activity. The scan doesn’t show exactly what’s causing the increased activity in my legs, but it could definitely be a second cancer (it could also be an infection, though that’s less likely), so we can’t move forward with the transplant until we know exactly what’s happening in there.

Much like this great picture of Toad, it’s my legs that are troubling.

To get some answers, a normal biopsy isn’t going to cut it here, so we’re going to have to open up one (or both) of my legs and really get in there to see what the trouble is. I have an appointment next Thursday (the 26th) with an Orthopedic Oncologist, where we’ll talk about the surgery and hopefully get it scheduled. Even after the surgery, it’ll be another week before the results, so it’s going to be a while (at least three weeks is my guess) before we know what’s causing these hot spots.

I hate not having answers, especially when I have so many family, friends and co-workers worried and wanting to know how things are going, but I’ll take the good news where I can get it, and the fact that I have no scheduled chemo for at least the time being is a great feeling.

This past Monday was my last scheduled chemotherapy appointment. Next Monday I’m going to the University of Kansas for a whole day of fun tests – First a PET scan, then a CT scan, and finally another biopsy. The results from those tests should be ready by that Friday, October 20th, when I’m going in to review everything with the transplant team. They’ll tell me at that point whether or not we can move forward with the bone marrow transplant.

Either way, there’s going to be more chemo appointments. If the cancer still isn’t gone, we need to kill it. If it is gone, we need to destroy my immune system to the extent that we can shove someone else’s stem cells into me without my body putting up a fight.

I’m actually feeling pretty good after this most recent round of treatments. My energy level is okay, and the pain has been minimal. There’s some muscle tenderness, and some painless spasms in my legs, but nothing too bad.

Mentally I think I’m doing better as well. That weekend we had last month where my son spent the night in the hospital, my cat died, and my doctor told me my chemo wasn’t working, all in less than 48 hours, took a lot more out of my spirits than I realized at the time.

There’s going to be a lot of things to deal with when this is all over; debt, getting my work back on track, etc. While some of that is anxiety inducing, it’s a weirdly comforting thought that I’ll only have to deal with all of that once I defeat cancer.

Basically, there’s no reason to sweat the future if my own goddamn blood can’t kill me.

This week is the start of my fifth round of chemotherapy treatments. I spent all of Monday in the infusion center, getting the stronger medication that’s part of my new treatment regimen.

I usually don’t feel too bad after a day of treatment (the fatigue usually comes a few days later), but this one was pretty rough. I spent the first couple of hours feeling an urgent need to vomit, and my head was throbbing. Laying down to rest around 6pm resulted in me finally waking up about twelve hours later feeling a good bit better, the headache and nausea gone.

As of tonight (Wednesday), I’m back to the usual symptoms of fatigue and lower leg pain. The fatigue really is something else… it doesn’t matter how much rest or sleep I get, I just have absolutely no energy. I had to walk down to the basement for something yesterday, and even that left me out of breath and weak.

Like this, only 80% less cute

The lower leg pain isn’t that bad at the moment, I think it’s mostly from swelling due to water retention. It feels like everything below my knees is attached to weights, which makes walking difficult and keeps me off-balance.

This is the second time I’ve gone through the new treatments, and if it’s anything like the first, this weekend is when the fatigue and pain will really hit me, so we’ll see.

Mentally I’m doing okay. I had a talk with my oncologist before my chemo on Monday, and he was still mostly encouraging. While he couldn’t rule out the new pain I’ve been having in my left leg as a new metastasis, he thinks that it’s far more likely to be pain due to bone marrow in my pelvis rebuilding.

I have some pretty big tests scheduled for October 16th, which will determine a lot of what happens next. If those tests still show some remaining cancer, then we’ll basically have to start over but with the addition of radiation treatments, which doesn’t sound very fun.

If the tests show that I’m in full remission, then we’ll move forward with bone marrow transplant, which is its own set of worries. If you want to sleep tonight, do yourself a favor and don’t research the possible side-effects of Graft vs. Host Disease. It’s not nearly as funny as Arrested Development made it seem.

Like this, only 80% more blood