Lifewithoutaspacebarishard!

Well! WOW, it's difficult to write without a spacebar! My notebook's spacebar broke (and then there were some connection problems) so I've had trouble getting in an update -- sorry!

The truth is also that I spoke too soon about the dosage reduction making life so much easier. I'm exhausted so for the time being I'm just going to share here an update I gave to a dear friend:

I'm just really having a hard time with this chemo, unfortunately. It turns out that it's a little bit better with the decreased dosage but just a little. I've still got some significant physical difficulty for about 12 of the 14 days between cycles. (One treatment = one cycle.) The biggest complaints are debilitating fatigue, debilitating headache, and debilitating constipation/crazy bowel issues. Once in a while there's a little projectile vomiting thrown in for excitement, but the accompanying diminished appetite is actually yielding happy results on the scale!

Isn't this a happy response? I just like you too much and feel like you're too much of a friend to put on my breezy, "I can handle it!" voice, so you're ending up with an earful. (Or eyeful, as it were.) The truth is that Lorraine and I are really worried about this chemo regimen, because neither of us can imagine it being sustainable over the longterm. I kept hearing how "well tolerated" it was, but that has just not been my experience. I don't have enough energy to even do laundry or play with my dogs, my head hurts so much we have to speak in hushed tones and I have to stay in bed, and my stomach is always cramping or in a state of flux and great crisis. I haven't lost any hair yet, so that's a great relief, as it could have thinned! We'll talk to my onc this Friday (I see him before each treatment, which is an absolute pleasure, as we adore him and trust him completely.)

Emotionally, we're both quite fragile. Of course, it weighs on everything, and there's never any escaping the reality of it. It's just so heavy. And THERE. I can only assume -- and hope to God -- that it gets easier. Lorraine is absolutely amazing, but she's in such pain. We both are.

I'll post more soon, I promise.

And there was much rejoicing!

Well, friends, I am THRILLED to report that the small reduction in Gemzar dosage --from twelve hundred something thingamajigs per metric squared something to a thousand something thingamajigs per metric squared something -- has made an ENORMOUS difference in my well being!

I had treatment on Friday. Friday night was ok, Saturday was pretty good also until the evening, when a headache hit and also a mild feeling of having the flu. On Saturday I gave myself a Neupogen shot, so Sunday morning brought back, hip, and thigh pain (it's normal; the purpose of the shots is to put your bone marrow into hyper-production of white blood cells, causing the marrow to expand, which is temporarily painful. Some folks experience pain with these growth stimulators more than others, and I just happen to fall into the hit-by-a-truck category. C'est la vie.) Sunday I felt worse, with increased headache and jaw pain, nausea, mouth pain and fatigue, but still pushed myself to be up and active all day, and probably overdid it because I really fell out in the afternoon. This morning, Monday, I've got all of the aforementioned complaints -- as well as a RAGING headache -- but I'm truly NOT complaining! I'd say I'm faring, overall, about 75% better than I was during the last cycle. That's huge! I was out of commission for 10 days on that one! Lorraine is ecstatic. She missed me last time! (I was getting out of bed around 7:00 p.m.)

The constipation is under control this time -- still an issue, but nowhere NEAR the problem it was last time. I'd say the headache, jaw pain and body aches are the worst. But seriously: SO much better than Round One.

Sorry to go through the whole litany of bodily experiences, but I record them all here, as I've done since the beginning, in the hopes that my experience can be of some benefit to someone else down the road. I know that when I first entered into what would become a sort of cancer career, I was so eager to read of others' personal experiences with treatment, and there was a real dearth of Hodgkins blogs back then. (Now there are many more.) As I've entered into new treatments I've found so little personal info online, I've vowed to share my experiences here. Interestingly, I share MUCH more information here than I do with my closest friends!

In other news, Lorraine and I have entered into a new weight loss period......of which my part will be shared here! Holy mother of GAWD it will be good to talk about something besides freakin' cancer!! Hello, Weight Loss Blog, my old friend! I missed you so! As some of you may know -- or read in my blog header -- this thing started, back in the day (2004,) as a weight loss blog, back when I was busting my ass to lose weight instead of beat (or live with) cancer. I lost about 80 pounds in 8 months by watching what I ate and exercising. (The loss was not related to my lymphoma; nothing sudden or drastic, just a steady rate of loss which actually slowed towards the end, as my cancer was progressing.) I'm currently about 20 pounds over my ending weight of that time, and I intend to do it again like I did it last time. Stay tuned.

#2 postponed

Tuesday's chemo was postponed because my counts were too low, so I got a reprieve! It really was a break because it allowed me to enjoy the 4th with some great friends. The low counts made me feel pretty punky, but I still felt better than I had in a couple of weeks. On Tuesday Lorraine and I met with my doc to review how the first treatment had gone, as he'd been out of town, and he was pretty struck by the severity of my response to Round One. We were in agreement that this regimen shouldn't keep me in bed for 10 out of the 14 days between treatments. (Gee, you think?)

He said that normally he'd keep the dose high for the first month or two to do as much damage as possible right out of the gate, but that because of how low my counts went and how badly I reacted, he's going to lower the dosage now, beginning with tomorrow's treatment.

Going forward, my treatments will be on Fridays, and I'll give myself Neupogen shots on every other day for the first five days after each treatment to keep my white blood counts up at a safe level. I sure don't enjoy giving myself shots in my stomach and don't exactly relish the prospect of doing that for the rest of my life, but at the same time I'm very thankful that the shots exist and will allow me to continue to receive my treatment uninterrupted.

As for my spirits, well, they're going to get better with some medicinal support. We're doubling my Wellbutrin dosage to meet the "heavier load" of my terminal status. I'm definitely depressed, so hopefully this will help. I still haven't seen my therapist (Hi, Ali!) in private yet, but Lorraine and I have both benefited from a few talks we've had with her. Maybe the Wellbutrin will warm the waters into which I'll dive whenever we do talk.

In the meantime, I'm really enjoying some canine therapy -- not only my own two, but also a neighbor's big, drooly hound as well. There's not a lot that's better than puppy kisses for making everything right in the world, is there?