Today was a pretty happy day for us. After 3 years, Holly got her mediport out.  For those that don't know, a mediport  is a device that gets implanted (in this case, in Holly's chest) and then a line runs into a vein.  The purpose is so that when drugs (in this case chemo) get administered regularly, they don't need to use the veins in your arm for IV's. It is kind of weird watching the nurse jam a needle in Holly's chest, but the result was a lot better. The device was about the size of a silver dollar and I was expecting it to be about the size of a quarter.  We obviously got to keep it.  We threw it away right away because it was filled with formaldehyde, but it was cool for me and the kids to see it. The important part of the whole thing is that it is kind of closure for us.  There will always be memories of some hard times that we went through and some physical scars, but getting this device out, an obvious lump in her chest is one more step to getting on with our lives.

I think that both Holly & I had pretty lofty expectations when she stopped taking her Xeloda. While I'm sure that we knew, in the back of our heads that it wouldn't be rosy on day one, I think that we were hoping for some miracle bounce back. That really isn't the case. I was trying to explain how chemo works to a friend recently. Fortunately, it was at a New Years Eve party so that made things easy. Let's say that chemotherapy is the equivalent of the beer that he was drinking. One beer, not so bad. Seven or eight beers, you'll really be feeling it. 10 or 12 and you're getting a tiny sliver of what is going on. Not only will you feel effects of the 12 beers when you are worshiping the porcelain god, but you'll also be feeling it for a good chunk of the next day. Holly has a chemo hangover. She seems like she is getting a negligibly better each day, but it is still hard for her. She still has, and will probably have for a long time, the side effects of the chemo. Tired, nausea, tingles, neruopathy, nasty stuff. Unlike booze, no amount of Gatorade will flush it from her system. It is one of those things, like so many other things with cancer, that fucking sucks (which has now become our favorite phrase, more on that soon).

Only a month left. It sounds so positive doesn't it. But imagine feeling about as sick as you've ever felt. Now think about feeling that way for 3 - 4 months. The prospect of having to feel that way for at least another month is pretty unbearable. We see a light at the end of the tunnel, but it is fairly dim. It's getting bigger, but it is coming at us slowly. It seems like it is coming at us at the same speed, but our perception is off. Like one of those physics shows about light speed. What the hell, it's only a month. I imagine that this is what prisoners feel like when they know that they only have a month left to go in their sentence. It's only a month. A month to avoid getting shanked. Or maybe, what a parent feels like knowing that their child will be home from Iraq in a month. They are still getting shot at regularly, but it is only a month. A month seems like a really long time to feel really horrible.

On Monday, Holly had her 7th treatment. The day started like the other 6. Wake up, get dressed, get kids dressed, then the question. "Do you have any questions for Dr. Uyei?" I couldn't think of anything.  Neither could Holly, really.  We had a friend that recently had a pretty significant relapse.  So we asked about that.  Even if it is distant, it is still a concern.  So here was what we learned about relapses.  They happen, but there really doesn't seem to be any rhyme or reason behind them.  Just like cancer itself.  Colon cancer relapse can hit the colon again.  It can hit the liver, the lungs or really any where else.  While they don't come out and say it, it is kind of like when you take your car to get fixed and 2 weeks later there is something completely different wrong with it.  I wonder why they don't call that a relapse, too?  Probably marketing.  There also isn't a stage number associated with a relapse.  Odd.  I wonder why they would rank a first bout but not subsequent bouts? Is this what happens?  It seems like we've lumped going to the oncologist in the same bucket as going to the grocery store.  "Anything you want from the store, honey?"  I guess, sadly, after 7 chemo treatments and over 100 different doctors visits that we have become the experts.  We've become the old pro.  That's a bummer. Photo from the Old Pro in Palo Alto by ifindkarma. 

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Tags: old_pro, palo_alto, chemo, cancer, experience

As I've mentioned all along, the effects of chemotherapy are cumulative. We've been really fortunate in that it has usually only been the first day or so after the treatment that Holly has felt really lousy. Unfortunately, this week has been pretty bad. All of the effects of chemo are starting to catch up with Holly and she feels terrible. The worst part for her is that this awful disease is taking things away from her. Last night, it was back to school night for our son. Not that it is the end of the world, but because of, for lack of a better expression, digestion issues, she feels like a prisoner in our home. She feels like she is missing important chunks of her life. She's simply sick of feeling terrible, sick of being tired, sick of not wanting to do anything, sick of not being able to do anything. We know that it will get better over the next few days, but right now, there is no getting around it. Cancer sucks.

This is kind of the look that Holly always gets when I bust out the camera in weird situations. The 'Schnaars, put it away' look. We met with Dr. Uyei this morning to find out about the CT from last week. Good news!!! The spots in Holly's chest was simply a remnant thymic. What is that you ask? I had no idea and had to Wikipedia it myself. Essentially, it is an organ that helps in the creation of T-Cells. You can look that one up, but it is good news. We also found out that we miscalculated the number of chemo treatments that Holly has in our favor. We had thought that after today she would have had 4 more treatments, when in fact, she only has 3 more. W00T!! Finally, Holly had her 5th treatment today and feels horrible. Tomorrow will be better.

Holly had her 4th Oxiliplatin treatment today. Like always, it sucks. She went in feeling great and came home feeling crappy. I don't know how she wills herself to go or take the pills everyday. To knowingly take a poison. I don't know. She came home and crashed. She woke up and we watched a couple of episodes of Cash Cab and she crashed again. It's late and I've got a bunch of work to do so I'm gonna keep it short. The next big event is a CT Scan on my birthday (10/8). Maybe we'll get a cake with that enema. You'd think that they would give us some sort of frequent guest card or something. Like Starwood points. Instead of free breakfast or room upgrades, we'd get warm hands, fancy lube and maybe less insurance hassles.

When Holly was first prescribed the adjunct treatment of Xeloda & Oxciliplatin, we were told that her hair would probably thin a bit, but it wouldn't fall out. I think that our definition of 'a bit' and the doctors definition are two different things. While I still think that she looks great, Holly has reached a level of frustration with the thinning. I don't see it, but she is complaining that large chunks are coming out when she brushes. More than anything, though, she doesn't want to let it go too long. In her words, she'd rather rip the band-aid off quickly. She has made the decision to shave her head. It is a way for her to be in control of her cancer and it is a chance to help other people. Her amazing hair will be going to Locks of Love, an organization that uses human hair to make wigs for kids with cancer and other diseases. We recognize that for a lot of women going through cancer, the decision (or lack of decision depending on how forced it is) to shave their head can not be an easy one. Since day one, we've wanted to share our cancer experience in hopes that it will change lives either by education or empathy. This experience will be no different. While the decision to shave is not 100% final yet, it is looking like that will be the plan shortly after her next treatment (1 weeks from tomorrow). I am planning on documenting the process and posting it on this and other sites (youtube, vimeo, Yahoo video, etc.). We'd love to do some unique things around this in raising both awareness and money for colo-rectal cancers. We've thought about selling sponsorships or selling her hair by the inch in a banner ad, but we are really looking for some unique ideas that would help to encourage people to think about this horrible disease. What are your thoughts?

Back when I was a kid, we didn't have 60" plasma TV's with 1,000 channels of crystal clear, digital, high def programming. No we had 7 channels. In Philadelphia we had 3, 6, 10, 12, 17, 29 & 48. You had to know the difference between UHF & VHF and you were stuck watching commercials. Cartoons were only on on Saturday mornings from 7 - 10. While being able to tolerate such limited programming was a skill, a far greater skill was the ability to adjust the rabbit ear antenna on your set. Anyone over the age of 30 probably recalls the rabbit ear antenna. You remember your dad freaking out because the TV would go static-y during the most important play of the game. He'd get out of his Lazy-Boy and curse and scream and move them around to get a clear picture on a black and white 15" set. Your uncle would wrap tin foil around them to make them longer in hopes of getting a better signal. And then, if it were an important program, he'd have you pinch one of the ears with your left hand and hold your right hand on the radiator (baseball season only) in hopes that your body as a conduit would somehow inherit more signal from the sky than rabbit ears alone. Then the knobs. Oy vey, the knobs. Once you got your picture as close as you possibly could with the rabbit ears, it would be on to the knobs. Rotate the signal ever so slightly in order to dial in the granularity even more. Oh no, the picture looks great but it is flickering!!! "Get me my flat head boy", the Old Man would yell. Of course, I couldn't find one, but a butter knife worked just as well. Adjust the Vert & Horiz until that Phillies game comes in. The picture would look great for about 8 seconds and then the dance would start over again. Cancer recovery is a lot like those old television sets. No one has the perfect picture, it is just constant, minor adjustments. Monday was really bad. Not just like I don't feel well bad, but really bad should we go to the hospital bad. Which had it's own mental side effects. Anywhere but the f'ing hospital again. The side effects of chemotherapy seem to be incredibly unpredictable and contradictory. It might cause headaches, it might not. It might cause hot flashes, it might make you feel cold. It might cause constipation, it might cause diarrhea. Who knows? So it's an adjustment. Move the rabbit ears a little bit this way, oh, that makes it worse, move them a little more the other way. Oh, that did something else? Oh, move them around some more. It is a horrible way to live. We've gotten into the point of documenting everything. What did she eat? What were the effects? Did she exercise? What did she do? What were the effects? How did she sleep? What were the effects? And so on and so forth. It seems to be the only way to understand cause and effect of what she does and how it makes her feel. We are stating to get her body dialed in. The last couple of days she has been feeling good. Minor modifications to diet, increased exercise of course seem to be working, but as anyone who has ever tried to lose weight knows, modifications to diet and exercise are tough to pull off. The rabbit ears seem to be in the right place now, I just hope that they stay there.

Like a total dolt, I forgot my camera, but we had an awesome time anyway. Holly and I spent the weekend, kid free, at Hotel Valencia in Santana Row. We thought about going to Carmel or San Francisco, but decided that, rather than wasting kid free time driving, we would go some place close. We also lucked into some money recently, so it was almost like it was a free vacation. It was an amazing time. Upon arrival, I went across the street and did some damage at Borders and we spent the rest of the afternoon basking in the beautiful, Bay Area weather (88 sunny, of course) sitting by the pool enjoying overpriced, watered down cocktails. Saturday night, we did a bit of shopping, enjoyed a nice dinner at the quite uncool Left Bank (8:00 and empty at Santana Row is never a good sign - but no line) and retired early. Sunday morning, breakfast in bed with the paper, a trip to the farmers market for lunch and off home. A short, much needed vacation. It was just perfect. Like our Hawaii vacation, this one was cancer free. Like Hawaii, if the subject comes up, it is simply This Silliness. As in 'Once This Silliness is over, we will take a long vacation.' or 'I'm tired of This Silliness and I don't feel well.' Right now, This Silliness is causing some major problems. The side effects of chemotherapy have been less than pleasant. Holly has been experiencing major stomach cramps and more than a bit of neuropathy, but still remains insanely positive and upbeat about beating This Silliness. We know that we will. We know that we are winning this fight. Unfortunately, This Silliness has gotten some punches in during this round.