On May 30th, just over a month after Sam's passing, my father lost his battle with leiomyosarcoma (actually died from complications following three brain surgeries). For various reasons, I have chosen not to update Samantha's blog with family news, and have elected to keep it virtually as she left it. For those interested in catching up on the aftermath, please feel free to read my blog: http://rhymeswithdrowning.blogspot.com

4/12/05 - Godspeed, My Darling

My beautiful wife Samantha, my soulmate of 20 years, wife of almost 15, mother of my two wonderful children and my partner in all things, passed away at 5AM Tuesday morning (4/12). I held her hand and comforted her during the last 3 hours of her fight, and am consoled that she has found peace after such a hard struggle. Rather ominously, as she took her last breaths, there was a soft roll of thunder, and a songbird immediately started singing in the tree outside - a fitting exit for a lifelong actress and director.

Sam was comfortable and surrounded by everyone's love, and held by her husband as she opened the door and went on the Big Journey. Her last whispered word to me was "love". It was an intense human experience that I will never be able to forget, and I hope that I have someone holding my hand when it's my turn. If her passing taught us anything, it is to not sweat the small stuff, and to cherish EVERY MOMENT you have with your loved ones. You ultimately don't know how many of those moments you will get.

We are grateful for the kindness and support the online community has shown our family through some emotionally and financially challenging times, as Samantha took a rare and aggressive cancer head-on and said, "it's not my time yet!" She was strong, resilient and loving to the end, and we will miss her always.

Sam wanted no "memorial service", but she said we could have a party and have fun. If you live in the Puget Sound area, there will be party on May 1st. Email me at todd@deep7.com for time & location details as they are determined. If you don't live in the region, raise a toast to Sam on May 1st and be with her in spirit.

Edit (4/19/05): Samantha's illness took a heavy toll on our family, both emotionally and financially. We lost our company health insurance just as she was diagnosed, and the out-of-pocket medical expenses consumed what little we'd managed to start saving for retirement, maxed out our credit cards and our home equity. Without my business partner to help run the company, I am effectively unemployed and must seek outside work to support my kids and the mortgage on the home they've grown up in. A fund has been established to aid our family getting back on top of things. You can donate to the Samantha Downing Memorial Fund c/o Todd Downing at any Wells Fargo. Once things have stabilized, we hope to convert the fund into a charitable institution that can be used to aid other young families facing financial hardship from terminal illness. You can also donate via PayPal to todd@deep7.com, although it's an Ebay merchant account and PayPal will take their pound of flesh. Again, we thank you for past kindness and hope that you are all well.

2/24/05

February is not a nice month for me. At least not this year. On about the 8th, I was admitted to the hospital for pain in my pelvic bone. Lo and behold (after another MRI), it's more tumors - this time in the central area. They put me on a morphine drip to take away the pain and started me on radiation for that portion of my body. Also, my platelet levels were low, my calcium level was so low they were afraid to let me out, my magnesium was getting better, but still needed a drip. My scalp had created an infection, so they also put me on IV antibiotics. They also gave me a blood transfusion. After the first unit, I started feeling very uncomfortable and insisted they take it out, so they did. The big problem for me was that they were running the blood through a "stuck-in" IV rather than my port. My port was being used for all the other stuff, and you can't mix blood with anything else when you're giving it. At the end of my visit (and I'm talking VERY end - it was the last thing they did before discharge), they put in another two units through my port and I was fine with both of those. They kept coming in to check up on me, because I guess it's not uncommon to get a reaction like that when the body feels like it's about to have too much blood. There's a name for it, but I can't remember it off the top of my head and all my searches on the web come up with nothing useful. Anyway, I was finally released on the 17th.

During my stay, they gave me a four hour "pass" to go out to dinner with my family for my birthday (on the 11th). It was very close to a disaster, and I was so happy to get back to the hospital where it was quiet. It was nice to see family during that time, though. Thanks everyone for thinking of me on that day. The energy was so strong it was almost visible.

Now for the "best" part. Yesterday I had a ct scan, and today I got the news. Everything's much worse. None of the chemotherapy or the antibody therapy (or whatever you would call it) did any good at all. It just gave me a huge number of side effects, like my lack of calcium, platelets, magnesium, potassium, and white blood cells. Also, the scabs on my head, which are healing rapidly now, and a great deal of bloating (I gained 20 lbs in water weight, all stored below my lungs all the way down to my toes). I have two huge rashes on the backs of my shins that seem to be caused by the bloating. They are going to tap my tummy tomorrow and see how much of it they can remove that way. I don't seem to be able to urinate well, and I think it's because all this liquid is pushing down on my bladder and cutting off its ability to fill up. I'll feel like I need to pee, but when I stand up, that feeling goes away.

The answer is - no more chemo. At all. Everything "new" on the horizon just does the same thing as everything else we've tried already. So we're going to get me healthy again - raise all my levels back to as close to normal as possible - and continue looking for other alternatives. We have talked about the radiation where you put a seed into a spot and radiate it directly, but we feel that I'm too sick to try anything drastic. The doc says that, as far as the statistics show (and we all know statistics don't even seem to be decent guidelines anymore) I have 9 to 12 months if I do absolutely nothing. I figure just geting healthy is a good thing, and that's my next aim. That will definitely help my quality of life. I'm tired of being tired. And sick of being sick, but I'll be less sick soon, we hope.

2/3/05

Everything is running as smoothly as can be expected. Because of the rash (which is still basically present, since the scabs are still healing), and because of the fact that, on physical examination, my doctor believes my liver has shrunk down some, we are "cautiously optimistic" about this particular regimen working. However, the use of Zometa is causing a loss of calcium and magnesium. The last two times I've gone in for infusions, my doctor has had me in there for a four hour magnesium drip. Today, they added calcium to that and something else that I missed since I was pretty sleepy from the Benadryl. Turns out that I didn't need to take the Benadryl at all, since it's really for blocking reactions to the Irinotecan, which I wasn't going to get this time around. But I had been told to take it before I came in last time, so I thought I was following directions. Anyway, I had a nice nap, and was there from 9am to after 6pm. The office had set up my free transportation pickup for 6:30, but the taxi never showed. I had to call around and finally found a ride, and got home about 25 minutes before 8pm. Thank goodness for relatives and friends!

Next week, we'll probably set up a ct scan for the following week. So I'll probably have a scan the week of Valentine's Day. I'd really like to know where this new stuff is taking me, and whether or not we are right to be "cautiously optimistic." I'd really like to see a change for the better at this point, as I'm sure we all do.

Thank you all for your prayers and well wishes. Knowing that I have support out there really keeps me going, even on those days when I just can't get out of bed. And yes, there have been those days in recent weeks. I can get so tired that I can't even sit up for more than a few minutes. I'm hoping that putting the calcium and magnesium back into my body might help, just as putting the potassium back in my system seemed to. I've got some huge pills and chewables I have to take for all this, but maybe it will be worth it. The pharmacy decided that the best way to get calcium in me was with Tums, but I don't know if I agree with that. I think what I will do is talk to the doctor tomorrow about switching to a calcium or a calcium + D tablet instead and just using the same mg he wants me to have. I really don't want to mess with the acidity level in my stomach while filling up on calcium. It just doesn't seem right somehow.

1/21/05

Hi everyone, and welcome to another year. I know it's been nearly a month since my last update, what with the holidays and visiting and shopping. And the new chemo, which I talked about on December 23rd. The regimen is slightly different than what I had originally said, though. We're not doing herceptin, we're doing Erbitux (aka cetuximab). I think I overheard someone else's drug name and ended up replacing it in my head. So I'm supposed to have Erbitux weekly, then Irinotecan, 5FU and Leucovorin two weeks on and one week off. Then I get Zometa monthly to make the mets in my pelvis go away. They give me all kinds of side medications, too. As well as things to bring home and take for a few days afterwards. Those are the hardest to remember I think.

Anyway, during this time, I had to take my computer down because I got a worm in my system somewhere. I went to all kinds of tech sites, trying to figure out how to make it go away and found out that a lot of people had been hit by the same thing and no one knew how to get rid of it. So I put everything important on to Todd's storage drive and wiped my hard disk completely. That same day, Todd had invited a friend over to take a look at his machines and see if there were any way of marrying them into one big, fast machine. This took a lot longer than expected, and in the end, after much gnashing of the teeth and swearing at computer machinery, it didn't work. My brother came over to see what he could do to fix it, but things did not bode well. Basically, the big storage drive got iced somehow in all this process and we've lost a great deal of the data that was on that drive. Including most of our contact lists, which we're slowly rebuilding.

So now that the majority of the fires have been put out, we can get back to our normal lives. The link to 2004 just has all of last year's postings on it, in the same order they appeared before. I will eventually get around to fixing that year up like all the rest, but now is not the time. I'm pretty tired, and fatigue seems to be a side effect in just about every one of the drugs they're giving me. Fatigue doesn't help you get to sleep, however. Don't ask me why it doesn't work, but I can get in bed, lay there for a good hour and never fall asleep. I'm still fatigued and don't want to get up, but I'm not sleeping either. I just do the Ambien thing at night and that still works. I actually did get out to run errands today.

One other side effect that I've had to deal with is what they call an acne-form rash. It looks like a really horrible case of acne, but normal acne medication doesn't do anything. It started out on my chin and spread to my entire head. And this was considered a "mild" case. Some people get this reaction all over their bodies! It's hard enough to deal with what I have, I can't imagine it being everywhere. Because this rash also showed up on my scalp, it's been making a lot of my hair come out, too. I was looking really patchy and my hair was starting to become annoying - falling out on my keyboard, into my food, in my drinks, and clogging up the shower again. So we buzzed it short today. Because of the scalp problem, we couldn't shave all the way down to the bottom, but I didn't want to. I'm not going to be in pain when I brush my hair, because there's nothing to brush. I can skip the conditioner step, because there's not enough to condition, which gives me one less time to stick my head under the spray, the part that really hurts. And I don't have to worry about trying to style it, because there's nothing to style!

I'm really too tired to continue. I've been working on this off and on all day and I need to put it to bed. Online.