Another False Alarm

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I already had today’s post written. It was all about how I didn’t want to go chemo today because I felt really good (in fact this is the best I’ve felt in months). Then at about 4:40 in the afternoon on Tuesday I got a phone call from the doctor’s office letting me know that they did not want me to come in for chemo. I had gotten what I wanted, but suddenly I wasn’t happy about it.

I had gone in on Tuesday morning to have what will become a standard day-before-chemo blood draw, and the results indicated that my white blood cell count has not recovered enough for me to undergo another treatment this week. The nurse that I spoke to didn’t seem to think that this was something to be overly concerned about, it doesn’t indicate anything and it’s a common side effect of chemotherapy. My doctor just wants to wait another week and give those numbers a chance to get higher before we start up again. She also indicated that with this knowledge they may be prescribing some additional medications to help boost my white blood cell counts after the next treatment, now (tentatively, I guess) scheduled for next Wednesday.

This is actually really frustrating. I spent the whole day thinking about how I REALLY did not want to go back in for chemo, but now that it’s a reality I just wish that I was going in. I mean, let’s get this show on the road! Every day I’m not being treated is another day that I’m not getting better. Please note that this sentiment is now the exact opposite of the original draft where I spent several hundred words complaining about how I did not want to go in for my second dose of chemo today. Be careful what you wish for, I guess.

The biggest bummer is that this will push us onto a new two week schedule. Looking forward, the original every two week schedule seemed to fit well with a number of events that we already had on the calendar. Most notably the upcoming holidays. Thanksgiving and Christmas both fell on what was looking to be “a good week” for me. But if I now have chemo next week and then everything is based on that two week cycle it now pushes them onto “a bad week.” Oh well. One thing I’ve clearly learned is not to count on anything, it can all change so very fast!

Next to Normal

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Today (Wednesday) was such a normal day that I almost forgot to blog before going to bed. For the last few weeks I’ve had cancer related updates and new things to share every day, but today was just a day. And to be honest, I feel perfectly healthy and I didn’t really think about cancer much today. The first draft of yesterday’s blog post (written before I knew that I wasn’t going in for chemo this week) had a big section about how great I feel, and how I didn’t want to back in for chemo because I haven’t felt this good in months. I had been told that this would happen, that after I emerge from my first dose of chemo all of my symptoms would disappear and I would feel great. It’s exactly what happened, and I had pretty much made up my mind that I didn’t need to go back and that I was cured, though I had doubts that my oncologist or my wife were going to buy it.

But still, a very normal day today. It felt like September 12th all over again (the day before my first doctor’s appointment). I got up at about 8:30 and spent the morning applying the second coat of paint to the bathroom. Then in the afternoon I took care of some errands and took the dog for a long walk before starting some house cleaning. I have energy and I have been able to accomplish things again. It’s almost enough to make me forget entirely. Like it never happened! I need to remember to enjoy this while it lasts.

I think Christine had a rough day though. As far as she was concerned it was her “Friday” all day on Tuesday. I had chemo scheduled for Wednesday and she wasn’t planning on coming back into work for the rest of the week. So it was Friday, right up until 4:45 when I called her and let her know that they had canceled my appointment. Suddenly it was Tuesday again, that has got to be a rough adjustment to make.

A special thanks goes out to all of Christine’s co-workers who have agreed to help to cover for her while she is out of the office every other week, for half the week. Especially now, when our schedule has changed and now all of the days that she needs coverage on will be shifting (and thanks in advance if and when it shifts again).

In the meantime, I’m working on getting my white blood cell count back up. I don’t really know how to do that… but I sure think about it alot. I concentrate really hard and imagine a new white blood cell just popping into existence and joining his white blood cell friends for a joy ride through my blood stream. I’m pretty sure that’s not how it works, but I like to think that it helps.

Few More Days to Sign Up

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Still a few more days to sign up to join us at the Running Scared 5K (or Walking Confidently 5K as I hope to do). My sister is hoping to register the team tomorrow (Saturday) so if you still want to join us please comment below or email me and I’ll get you in touch with her. I think she said we have about 25 people joining us next Sunday on Halloween at 9am. It’s in Seattle at Seward Park, why not join us?

The proceeds benefit the Leukemia & Lymphoma Society which has donated over $680 million to blood cancer research since it’s inception in 1954. Organizations like THIS are the reason that I have a treatable and curable cancer. Organizations like THIS are responsible for the medical breakthroughs that are saving my life. It’s a $20 entry fee with all proceeds going to cure cancer.

One caveat though, due to the change in my chemo schedule it’s now unclear how much of the 5K I’ll actually be able to walk next week as it will now be only a few days after my next chemo treatment, rather than the full week and half that it was going to be. Regardless I’m still planning on walking it, just a little slower now, and maybe not the whole thing… There is no time limit though, so maybe I’ll just “camp here, and make for the summit in the morning.” I’m certainly no threat to my last, and only, official 5K time when we did the Black Diamond Triathlon last year and I medal-ed in the team relay with Ryan and Sage.

So yeah, think about joining us if you can. It should be a lovely walk (or run if you wish) near the shores of Lake Washington. And thanks to everyone who has already signed up to join us, it should be a fun morning!

“The Blood”

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I had a chance to see the results of the blood test which kept me from chemo last Wednesday. Whereas a normal person has a white blood cell count (WBC) in the 4.0 – 10.7 K/ul (I think that’s thousands per unit maybe?) range, mine came back at an underwhelming 1.5.

I can see all of my blood test results online so I went back and looked at the results from previous CBC/PLT/DIFF’s that I’ve had just to give since I was curious to see how those numbers have changed. My first doctor’s appointment back on September 13 had my WBC count at 13.7 which is actually high. I don’t know if it’s related, but this would be back when my symptoms were pretty acute and I was consistently running a temperature in low 100’s most of the time. Two weeks later, in anticipation of my first chemo treatment and chest port installation (which still hasn’t happened), I had another blood draw and my WBC count was back down to 10.7, just on the high end of the normal range. But then my first chemotherapy treatment came along and wiped them out… all of them.

This is one of the reasons why people going through chemotherapy are so prone to infection. Christine is much better at freaking out and worrying about this much more than I am. She’s admitted to pretty much becoming a germ-a-phobe lately, as she convinced that she’s going bring something home that I’m going to catch and that will kill me. She’s taken to leaving the house armed with disinfectant hand sanitizers and wipes, and has become an obsessive hand washer. It’s like the Swine-Flu scare all over again. Admittedly, I haven’t been so great about changing my habits in that respect, and I’m pretty sure that it’s slowly driving her insane. But I don’t really leave the house as much as I used to so as far as I’m concerned, I’m more likely to catch something from the dog (fleas, rabies, a tapeworm) than I am from the outside world. Still, 1.5… if that’s what it was two weeks after my first dose of chemo, I shutter to think about how low it actually got. What’s worse is that Christine might be right to be so concerned.

I go in again this morning for another pre-chemo blood draw before tomorrow’s re-scheduled treatment. Here’s hoping that my WBC count has come back up enough so that I can have chemotherapy tomorrow and we can send those numbers crashing back down. What an odd thing to wish for.

Haircut

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It was time, and to give you an idea of why, we filmed this quick into before we cut it:

Unfortunately, due to video compression, you may not be able to clearly see the handfuls of hair (switching to 480p helps). But trust me, they were there, and they were kind of gross. If you have a long-haired pet and a furminator, then you get the idea.

I figured that my hair was going to start falling out about now, but I thought that it would be in response to my second chemo treatment. Imagine my surprise then when it started falling out in a big way this weekend. We had noticed that it was certainly thinning in places, but when I got out of the shower on Thursday and toweled off my head the towel was FULL of hair in a pretty gross way. It was happening.

As the weekend progressed we started finding more of it around the house and every morning my pillow is increasingly covered with hair. Even after a few short days of hair-loss I was starting to notice some real bald spots. So, as you can see from the video, since I can’t touch my head without pulling out a chunk of hair (a pretty nasty feeling I assure you) we made the decision to cut it pretty much all the way off.

Armed with some clippers that I picked up at Costco, Stine made quick work of my hair… but not before we had some fun with it.

Before. Note the included 'cape' which I wore even though it really didn't do anything to help keep the hair off of my clothes

Smoldering Good Looks

Punk?

I should have just left it like that

'Every Who down in Whoville loved Christmas alot ...'

And finally, after a few more passes with the clippers:

New Recruit? ... or Cancer Patient

Lots of space between the hairs up here... I do have a bit of a widow's peak, but it's certainly been exaggerated lately by the hairloss

Fallen soldiers

We decided to start by just cutting it real short. This is primarily just to keep it so that I no longer feel like a cat in spring as I walk around leaving my long hair all over the furniture, but if it continues to fall out leaving large bald patches (which there are certainly already a few) then we’ll go back and essentially shave the rest off to create a more uniform look. It may just continue to fall out in only certain areas, or it might fall out everywhere. Only time will tell. And as I keep learning there are always surprises.

I really thought that it would take a few treatments before it got the point that it would pull out this easily though, but I guess it’s just a testament to the power of these chemo drugs. It’s crazy to think that it’s been 3 weeks since my FIRST and only treatment at this point and I am still experiencing new side effects. Should definitely be interesting to watch my body react to these treatments as I start having them every two weeks like originally planned.

Speaking of which, my blood test yesterday came back and my white blood cell count is at 3.8, just 0.2 away from low end of a normal person, but high enough that we’re headed back to bootcamp chemo today. 1B, here we come! We’ll see you on the flip side!