5.07 MILLION!

Well, today was a long, long day, but hopefully a productive one. My blood counts continue to rebound – WBC is at 7,900 and the platelets are up to 33 (see a couple of posts down for the proper ranges). The best part? We were go for stem cell harvest!

Here’s the way the stem cell counting thing works. Dr. C’s magic stem cell number for me is 5 million. When the harvest is done, it takes a count of 10 million cells to have an actual harvest of 1 million. Therefore, my counts would need to be higher than 50 million to be able to do the harvest in one swell foop. My count? 57 million, baby.

Now, this doesn’t mean they have all that they need, so don’t uncross your fingers just yet. I find out tomorrow morning if I have to come back in for more harvesting. They were able to get the machine hooked up through my antecubitals (that inside part of your elbow where they draw blood), so they didn’t have to insert a line into my neck. Barb took many pictures which we’ll have up here in a bit.

Before the collection, I got another couple of Neupogen shots, which might help boost that 57 a bit, as well as one unit of blood.

Now, I have no problem seeing a big water balloon of blood above my head. I have no problem seeing the line come down and go into my port. I had no problem seeing the blood go in one arm, into the machine and back into the other arm. At some point, I had to move the tubes around a little bit, and that red bllod tube in my arm? It was… warm… That was quite unsettling to me, as we all know that warm = body temperature = HOLY CRAP, THIS IS THE BLOOD FROM MY BODY!!!

I felt I handled the revelation well, though. No screaming, no puking, no crying, just an occasional muffled whimper.

Oh, and I also realized what an idiot I was today. At one point during the collection, I had to go to the bathroom. When you’re hooked up to a huge filtration machine, you can’t just toddle off to the toidy any time you get the urge. I told my keeper and she brought me a urinal and pulled the drapes. Just before she left me to my business, she helped me get off of the stretcher and stand up. Shortly afterwards, the bright light of idiocy shined down upon my bald pate.

You see, I have rather limited hospital stay experience. My first extended stay and use of one of those handy dandy urinals was when my hip was dislocated back in ’94. I couldn’t move out of bed, so they gave me the bucket and I figured out how to use it. Thus it was when I was in the hospital for my last round of chemo. They had given me a strong diuretic in the middle of the night to try to calm my asthma attack, so they lined up a couple of urinals for me so I wouldn’t have to keep dragging my IV pole over to the bathroom. Working from prior experience, I… did my business… lying down like I had when my hip was dislocated. Only today did I realize : If my legs work, I can stand UP and use one of these! SO much easier!

Idiot.

Hey gang, I’m back. Well, I’ve been back for awhile, but I’ve been a bit too tired to get my thoughts together and post anything of note. The hospital stay’s still kind of a jumble in my brain and the time since then has mostly been spent sleeping. I do have a bit of recent news though, so I’ll let you guys in on it.

Since getting out of the hospital, I’ve been having two Neupogen shots a day. These are the shots that boost your white blood cells, like Neulasta but a smaller, more controlled dose. Over the weekend I got the shots down at Yale and on Sunday they drew bloodwork on me. Typical white blood count should be between 4,000 and 10,000. My white blood count was 900. Platelets? They were bad too. They were at 39 and the normal is from 100 to 150.

Anyway, this is bad news. I stand a big chance of getting infected by stuff and/or bleeding all over the place. Good thing my hair’s gone so I don’t need to shave. On Monday, we did more bloodwork (can’t clot well? Let’s stick a needle in you!) and things were better. My WBC doubled up to 1,800, but my platelets dropped to 21. Apparently 20 is the magical barrier where they do a blood transfusion on you, so I got out of having that done yesterday.

The good news? Even though my WBC is still in the basement, its doubling and the fact that my back has been killing me since Monday morning means that I’m currently a churnin’ burnin’ stem cell factory. In a mere couple of hours I’ll be down at Yale where they’ll be drawing some more blood to see if the situation is ripe to start harvesting stem cells. Hot diggity doodley!

So now that I see the time, I guess I’d better wrap this up and start getting ready to leave.

Well, it’s that time – I’m leaving work to go get checked in to the hospital. Don’t worry though, I’ll have a special guest blogger keep you all up to date – Barb!

Don’t miss me too much…

Well, things are moving again for me treatment-wise. The oral surgeon (Dr. Tool as Barb and I affectionately call him) said Tuesday that while my wisdom tooth holes weren’t healing as fast as a typical patient, they’re on track for me with my loverly situation. That means we are a go for the new chemo. I got the call from the transplant coordinator today and took some notes.

Next Thursday (March 30th) I get admitted into the Yale Children’s Hospital. My coordinator says it’s because the facility is the nicest to put me in, but I highly suspect one of the infusion nurses wrote something in my chart. I’ll be getting four bags of ifosfamide, each one given over a 24 hour period, a bag of gemzar for a couple of hours each day, and one push of the navalbine in one day.

The best news of this? After this chemo, I get my stem cells harvested! Crazy thing to get excited about, but to me, this means we’re moving forward. Once I’m done, the Neupogen (like Neulasta but less evil) starts. I already can’t understand my notes at this point. Once I get admitted, the coordinator will bring down a calendar with all of the dates for things, since she’ll then be able to figure out the specific dates and such depending on what time this starts. The Neupogen can either be given to me by one of us, by them, or by Dr. D’s office. I think at one point she said something about getting 2-3 shots per day? In the ensuing time period, I’ll be getting my blood checked occasionally by them (Yale) as I will possibly need transfusions after this chemo.

For some reason I’ve written “middle of the week of the 11th” at this point – I think that’s when the cells will be harvested. the week after that will be another PET scan. That will determine if I finally get the BEAM. If that blasted tumor’s still misbehaving, I might go for another cycle of this stuff or a cycle of something completely different. Apparently the doc’s had a lot of success with this combo, so hopefully this will do it and I can finally get started on the SCT.

I think that’s all I have written down on my piece of paper. A lot of stuff still hazy in the future, but at least we have the next step.

PBS Kids go!

I finally heard back from someone about the PET scans and the schedule. Naturally, I realized halfway home that I left all of my notes at work, so here’s what I’ve got from memory.

Basically, the PET scan sucked. It still shows the uptake in my chest, which means there’s still cancer there. What Dr. C wants to do is give me a harsher form of chemo. I’ll be back on the ifosfamide (the one that screwed with my bladder), only this time it will be matched up with gemcytobine (which is either another name for the gemzar I’ve had or something new, depending upon how it’s spelled) and navalbine (or navelbine which is something else that starts with a V but isn’t the “V” in ABVD – it’s something new). The trick to this chemo? I’m going to have to be in the hospital for it.

The nurse practitioner is the one who finally called me back and she said I would be in the hospital 4-5 days as the treatment was being given to me. The two main reasons for the hospital stay are that it’s going to be a rougher chemo than the others I’ve had and because at least one of them is on a really long drip cycle, so they have to keep me there while they give it to me.

When will this fun start? Well, now we’re back into the fuzzy haze of the future. She said it all depends on what the oral surgeons say. Tomorrow when my sandinista gets liberated, I have to ask the oral surgeon approximately how long it will take me to heal. This seems like a strange thing to ask, since people heal at different rates, and I figure that’s what he’s going to tell me. Whatever tentative date he says, I’ll call Yale and give them that date and they’ll set me up for chemo on the very next day. The NP didn’t think I’d need a really long time to heal, estimating that they’d probably be seeing me late next week. If so, that could work out well, since straddling the weekend would mean two less days of work I’d miss.

Of course, getting all of this arranged would have to find a way to throw a wrench in our plans somehow, right? Of course it does! Next weekend is Kevin’s birthday in Boston that Barb was going to be participating in. Naturally, she’s already reserved and paid for a room down there too. Oh boy! So in addition to all of this, she’s a) not going to get a break to have some fun and b) going to have to deal with the hotel people.

So now the question remains: Is it time to fall to my knees, rend my garments and shout up to the heavens “Why God, WHHYYYYYY?” Well, I considered the possibility for a bit, running through my options after the phone call. But come on – have you been reading this site? I’m a badass. Things will happen when they happen as they will happen and I will continue plugging along, proving to cancer who the boss is.

Hint: It’s not Tony Danza.

Okay, here’s the deal. I had my PET scan on Monday. I talkked to my transplant coordinator, who told me she would be off this week. I could call A, who’s covering for her, on Tuesday afternoon to find out the results of the PET scan and find out what my upcoming schedule would be.

Yesterday I called A and she was having computer issues and said she’d call me back as soon as she could access her files again. No return call at work, no return call at home. I get in to work this morning and give her a call.

She is out of the office on Wednesdays.

Would you not assume that exam results are important to a cancer patient and everyone in the immediate vicinity of the cancer patient? Would you not leave a big note somewhere saying “For the love of GOD call this patient ’cause he’s probably going crazy right now!”

So I call the emergency contact person, S, that A leaves on her voicemail. I try to explain to her how this is actually a sort of emergency, since I’m going to be out of work the next two days with the wisdom tooth thing and my boss needs to know if I’ll be in next week since I have projects that have to be handed to someone else if I’m not. Not an “I’m dying” emergency, but an emergency nonetheless since I WAS NEVER CALLED BACK YESTERDAY.

So S checks around and calls me back in a few minutes (learn a lesson, A). She starts out the call with “I’ve found out what’s going on, but you’re probably not going to like to hear this.”

A nurse practitioner is going to be looking at my scan and discussing the results with Dr. C. Why is an NP looking at them and not the doc? Go on, guess.

The doctor is on vacation this week.

Yes, even doctors need vacations, but couldn’t this have been mentioned last week? “By the way, your doctor’s going to be out of the office, so you might have to jump through a bunch of hoops to find out anything.” That’s all I ask is to be informed.

In other news, the bloodwork came back good, so tomorrow the wisdom tooth extraction will proceed. Every time I use the word “extraction,” I picture my wisdom tooth as a sandinista rebel ensconced in a guatemalan gulag. Too ’80s?