oh if only I had hair...

When I cut my hair short it was all a preemptive strike against the shock and emotional stress of loosing long locks of hair on my pillow or in the shower. I had a very short buzz cut when I went into the hospital for my second treatment. Since my cycles were three weeks apart that's exactly the time when my hair was scheduled to start to fall out. Sure enough when I was sitting in my hospital bed I started to play with my super short hair. Some part of me was still clinging to the thought that perhaps clippering my hair was a bad idea - i.e. that it would never fall out and that this would have been a big waste. But there I was, playing with my little stubble and having little tufts of hair come out. By the time I made it home from the hospital I had some random bald spots. I suppose I should have taken pictures, but trust me, it wasn't very pretty. So, the next morning I took at razor to my head and shaved it all off. The great news was that my eyelashes and eyebrows didn't seem to be affected. Sure, they would fall out, but there was no real noticeable increase in the number of lashes that would come off when I washed my mascara off. That is of course until around the time that my 5th treatment started. Then they seemed to want to head for the hills and fall out with no indication that there would be reinforcements. I now have one long eyelash on my left eye (not that they were ever anything but puny) and about 5 on my right. Then I have a bunch of little sprouts that are about a milimeter long. But I have no idea if they'll fall out again or if these will be in it for the long haul. Last week I even bought false eyelashes just to wear for some big meetings at work without feeling self conscious. Since my last treatment my hair new hair started to come in a little bit, but the tips are very blond. Of course about a week ago (remember that was about 3 weeks after my last treatment) even the new blond hair was falling out. It has dark brown roots, so it's anyone's guess what the actual color will be once it's filled in. Total length at this point is about 1/4 inch. I am guessing that it will grow about the same amount over the next month and then settle into the 1/2 in per month that's a normal rate of growth.

However, hope springs eternal and since chemo ended almost four weeks ago I am optimistic that my hair and lashes will start growing at some noticeable clip faster than that. Unfortunately no scientific medical information seems to be available. Doctors either don't want to give you an average time-line because they don't want to disappoint you or the general medical community just doesn't care. I kind of get that - the more important clinical work is on refining the chemo drugs so I'll survive, not in studying if/when I'll have luxurious lashes and eyebrows again. Yeah - I'm thinking of the t-shirt "chemo ate my eyebrows". Until then I'll be wearing false lashes, pink wigs, and colorful scarves.

you're hot then you're cold; you're yes then you're no...

It seems like so many things in my life recently have been on a serious roller coaster. So riddle me this one batman: am I up or down after you juxtapose the good and bad news?

Lost 5 lbs, BUT it was likely all water weight from edema that's likely something I'll have to permanently deal with.

My radiation got rescheduled to a more desirable time (7:50AM appointments rather than 8:30), BUT I still have to go through radiation.

My hair might be growing in light blond, which is seriously cool since it was very dark blond before I shaved it off, BUT it's starting to fall out again and I'm down to a total of 5 long lashes on both eyes and about 6 long eyebrow. On the other hand it is growing and it gives me something to pick at.

I ran 3.1 miles this morning and only had to walk 2 times and only for about 10 seconds each time. I also sprinted the last 200 feet and felt great; BUT I was still only at a 12 minute mile and I wasn't able to run very far last Friday on my long run (4.5 miles) and to be on track for the October 1/2 marathon I should have been at 6 miles...

I got tattooed by the radiation technician, BUT they were only four little dots and that's not very cool and/or exciting.

This weekend I decluttered a bunch of stuff, swept, mopped, and polished the kitchen, dining room, and living room BUT I scarred the kids in doing so & I still have a HUGE pile of toys in the entry hall where I relocated them from the living room.

This weekend I also went to see Lady GaGa and she was awesome BUT I had to get up at 4 am when someone had an accident in their bed.

If you know me at all you know I'm up!

still surreal

I don't know to whom I should attribute the quote that the days are long, but the years are short. It seems hard to believe that summer is almost over (which you can tell by the crappy weather we've had today) and that I am done with chemotherapy. I put a lot of things on hold mentally and emotionally. Part of me is starting to process that now. Yet I still have so much to look forward to. You know, I have to subject myself to the next part of the scientific experiments that will grant me superpowers. So, I had my meeting with my radiation oncologist last week and today I had a planning CAT scan - yippee, more radiation. I was poked in ways that I won't describe and tattooed with four little "jailhouse tattoos". That's where they put ink on your skin and then jab you with a needle. You can't imagine the fun, and unfortunately they refused to make any interesting designs. Just your basic dots. Then they used the CAT scan to line me up so they would have a roadmap of where my lymph nodes and stuff are for my daily radiation treatments. Next Wednesday I go in for a "dry run". They will put me in the machine and instead of radiating me with radiation I will be getting an Xray. Then the doctor will make sure things are perfectly lined up and starting Thursday (August 26th) I get daily doses of radiation. My last treatment is scheduled for October 5th. I know time will eventually move along, but at the same time it is so odd what becomes a "new normal" .

As an example, appointments are scheduled at the same time every day and some people have 60 or more treatments. Sitting in the waiting room I was able to watch quite a few these souls and their interactions. Lots of them had developed weird relationships with other patients and the medical staff. For one woman today was her last day. The receptionist was congratulating her on "graduating" and more than one person made the comment "you won't know what to do with your afternoons now that this is over". Her response was "I can think of a lot of things I'd rather be doing." She didn't want to be there and I just wanted to scream "I don't belong here either!" I don't want to be one of these people who comes in day after day chatting it up with my new "friends". I'm sure most of them are lovely people, but I have allowed myself to be sane because I've refused to admit that I'm sick. I don't know if I'm just having a little emotional roadblock brought on by the anticipation of the next phase, or if I'm just overly stressed this week. Pile on top of that the fact that I am disappointed that today was one of those days where I didn't get to see the kids at all. I was on a conference call hiding in my basement before they got up and by the time I was done, they were gone. I then had a dinner meeting that went until 10 pm and of course they were asleep before I got home. Remember the post about balancing things? Yeah, that was this week. Posting about it didn't seem to make it all better. Since it's late I'm going to sleep on it and see if that makes things better.

more insurance woes... aka I don't know how to do it all...

I am now "officially back" at work and boy do I love my job. Immediately I got slammed with two large reviews and I have also stepped back into a management role at my favorite client. The gentleman who had taken over for me while I was out for surgery and chemo is moving to Las Vegas, so the natural move is for me to take up the reins. Timing seems perfect and since I love the people there is no client I would rather serve. But I do need to pay attention to balancing things. Although busy hands are happy hands I probably can't be as over-zealous about work as I used to be. I thrive on stress - but right now that's probably not the best idea. So it really puts a lazer-like focus on doing a better job of creating work/life balance. You know, the thing I never seemed to have before the stuff hit the fan. Remember the Thanksgiving that I gave up my vacation time and worked on a proposal while my family was in town? You know, the proposal that we didn't even win. Yeah - those are the choices I didn't like making before, but am trying to avoid like the plague going forward. I will also have another administrative burden to handle: radiation. I went to the radiation oncologist last week to discuss my treatment plan. I will be going back later this week to get a CAT scan so the good Doc can make sure he knows where all my parts are. Then they program the radiation machine. A week or two later I get to start my daily infusion of superpower #2. I am presuming that Scotty won't be able to accidentally beam me up since they will be using a precise pattern focusing on the surgery site and lymph nodes. I don't have the exact schedule yet, but it is likely to start the last week of August. As for the logistics, it will be daily treatment making it a large time commitment.


So I decided to call my company's leaves and disability team. The sad news is that they will only cover disability if I'm out the whole day. It's an all-or-nothing deal. So, I could (easily) get approved to be out of work full-time for the 6 weeks of radiation or have a few hours eaten up by radiation and on top of that put in my 8-10 hour day... hmmm, neither one sounds like a fun way to spend most of September and October. The creative option is to work my butt off for 3-4 days a week and then have them write me out for 1-2 days of disability so I can recover and take it easy. My company and management have been wonderfully supportive, so I have no qualms about any of this actually being a problem. It's just another thing that I didn't think I would ever have to worry about.

biohazard spill on 11 SouthWest

Just about every chemo treatment something exciting happens. I fondly remember the first time where I showed up and my orders hadn't been submitted. Then there was the time that they were flat out wrong and they wanted to give me the wrong dosing of the drugs. Other visits included orders that weren't signed, but this time things were so exciting that I got a "code orange". Codes are interesting. They are used so that patients don't freak out over what's happening. You wouldn't want to hear "biohazard spill" or "uh-oh someone flat-lined" in the room next door. Code Orange at my hospital is a bio-hazard spill. In this case it was my precious taxol. How it came about is an error in training people on new processes. Over this past weekend the hospital changed the connection tubing on some drug bags. When my favorite nurse opened the bag to plug in my IV line it spilled some. They had trained her to open the bag a certain way, which she had done - but the training was wrong. I didn't freak out, but by this time I had already been subjected to numerous "you won't care what I do to you" drugs including the 25 mg of benadryl, some aloxi, decadron, and various others that are delivered right to the heart. So I grinned like a drunk fool and tried to take some pictures of the cleanup. (I know they're blurry, like I said, I was drugged!) Overall the damage was minimal. The spill was small enough that they didn't need to mix any more chemo, so that was fortunate.

The interesting and/or perturbing thing is that this hospital is one of the best in the nation. That means I am getting a pretty high standard of care even with the inconsistencies and silly issues. I trust my doctors and nurses (at least most of them) and am very glad that I am in this facility. However, reinforces the need to question them and keep them (and me) on our collective toes about the treatment they are prescribing and I am receiving.

So here I am at the culmination of my chemo treatment 8 hours away from being done with taxol and cisplatain. Then in about a week I meet with my radiation oncologist to discuss the next phase of treatment. I have already read horror stories on the internet about some radiation treatments that have gone awry and so I have a small list of questions for my radiation oncologist next week. If there's anyone out there who has experiences or advice to share about the radiation leg of the journey please feel free to let me know.