The Way Things Is (as of October 28th)

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.

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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…

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

 

 

 

 

The Results are In…

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.

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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.

The Way Things Is (as of October 18th)

Last Saturday was my 40th birthday. Haley and I typically don’t do much for each other’s birthdays (or Christmas, or holidays), preferring to save up our money for our annual anniversary trip, but this year she surprised me with my very own comic spinner rack.

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Now I can pretend I live in a 7-11 circa 1988!

It’s silly, but it’s something I’ve wanted since I was a kid. It says a lot about how awesome my wife is that she not only found such a great gift, but is perfectly fine with keeping a spinner rack full of old comic books in our nice, classy living room. I’m a lucky dude.

Believe it or not, that wasn’t the coolest thing she did for my birthday this year. The other thing she arranged was so bonkers that it deserves a whole post of it’s own, so look for that later this week.

I spent most of Monday at the University of Kansas Hospital, undergoing tests. First was a PET scan, then a CT scan, and finally a bone marrow biopsy. The scans were fine, and actually seemed to go quicker and easier than the scans I’ve had previously. I’ve had CT scans that took over an hour and a half, but this one only took about twenty or thirty minutes.

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I may have dozed off while waiting for my biopsy

The biopsy went about as well as can be expected for something that involves my bones and a power drill. At least this time I was sedated. It’s been a few days, and my pelvis is still sore from the drilling, which is a sentence I never thought I’d have to write.

On Friday, we’re going back to University of Kansas for the results from all those tests. It’s hard to overstate how important those results are; If they show that I’m in remission, I’m moving forward with the bone marrow transplant. If they show that I still have active “hotspots,” we’re going to have to restart the chemotherapy, only stronger and with the addition of radiation. Either way Friday is going to be a pretty big day.

We had a bit of a scare last night, as I’ve been feeling a little sick. With my immune system so weak, I have to be very careful about any symptoms of an illness, and last night my temperature got up to 99.8° which is luckily where it peaked. I literally had my shoes on and was about to leave for the ER when my temperature started coming back down.

I have a bunch of things I want to blog about… Logan’s 14th birthday, Haley’s brother Matt coming out here for a week, the process of finding an estate lawyer and filling out a will… but my energy levels have taken a real dip this week. Hopefully after a couple more days of rest I’ll be back to posting regularly.

The Way Things Is (as of October 11th)

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.

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The Way Things Is (as of October 4th)

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.

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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.

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Like this, only 80% more blood

 

 

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.