Gemzar and Navelbine kicked my ass!

Alright, I'm going to go with the theory that the Gemzar and Navelbine had to shock my system in order to effectively do their intended work on putting to sleep the Evil Inside Me. Either that, or they're just heinous drugs that are unsustainable over the long term. But we're not going to go there. I'm sticking with the first theory and am working very hard to mold my mind into a welcoming, receptive shape going into this Tuesday's second treatment. But let me back up.

I had the first one a coupla Tuesday's ago, and it passed pretty uneventfully. The actual infusion was about an hour, but if you've ever spent any time in an infusion ward -- and I sincerely hope you haven't and won't -- you'll know that one hour becomes many, many more. Anyway. Lorraine was with me, making me laugh -- God, I love her -- and when we went to grab a bite to eat back at a restaurant near home, I got hit with uncontrollable shakes and shivering -- no fever. Teeth chattering audibly, hands and body shaking in just this crazy way -- in 98 degrees! It lasted about an hour and a half, until I was bundled up beneath a bunch of blankets in bed.

The headaches hit that night. Blinding, leveling headaches. Not migraines, just really bad headaches. Duane mentioned that he'd had "debilitating" headaches after his first treatment but not thereafter, so I'm hoping that will be my experience also, as those headaches put me out of commission pretty much through the end of the week. I think they were exacerbated by the extreme dizziness I get when I'm constipated -- a biproduct of my stem cell transplant. Constipation is a biggie with this regimen, and I found myself in the dreaded laxative/stool softener catch-up mode despite my best efforts to be proactive going into treatment.

Loss of appetite was another biggie, so I sort of stopped eating....and when I went back in to get my bloodwork checked a week later, I was 13 pounds lighter! (Actually, 15 now!) How's THAT for a weight loss plan? I jest. (And inwardly rejoice.)

We also found that next Tuesday that my blood pressure was 140/110 -- so they detained me and gave me morphine to address my headache and stomach pain. They threatened to keep me overnight, but the morphine got it down below 100 so they let me go. Turns out Gemzar has a less common side effect of high blood pressure, so now it seems I'll have to go on some sort of blood pressure medication to manage it for as long as I'm on this regimen. That sucks, because I never had a blood pressure problem before and was happy about it.

Like I said, the constipation was an issue, so when I finally did go (with the violent assistance of the magical and effective Sorbitol) I strained quite a bit, and now have done some internal harm to my heretofore nicely healed 10" incision from my open abdominal biopsy. The outside's fine, it's the inside that I've hurt, and the surgeon's office says that I'll just have to not strain anymore and let it reheal for a few weeks. Fabulous! It's very, very painful, and feels like I've got a fresh wound. And here am I with a big fat supply of oxycodone, percocet, and morphine -- yes, I have morphine! -- and I'm afraid to take any of them because they all cause constipation. Ah, the tangled rat in a maze that is the life of a constipated cancer patient.

On a more serious note, I'm trying to massage my mind into some sort of positive resolve around this treatment. I said about it elsewhere:

This first one was just really, really hard, and I can only hope that it was just this first one. I can't live like this for any sustained period. I was talking to someone about it today, and she was telling me that I've adapted to all of these chemo regimens in my cancer career, and that I'll figure this one out too. That's sure as heck my plan. The difference, I pointed out to her, between this one and the others is that this one has no end goal. I went into both ABVD and my SCT stuff with this mentality of, "OK, this is a means to an end; you suck it up, you make the best of it, and you do your time. This is the cost of a cure, so it's worth it." I could also give you an end date on each experience. This time, there is no end date, and there will not be a cure. So it's a really different ballgame, one which will require that I develop different coping skills and improve my emotional resilience.

The pic above is of our newest family member, Sergio. We adopted him from a rescue org in January, and just adore him. He's a pretty neurotic little freak, but then that just really adds to his appeal. Oh, and he's definitely my dog, which is nice since he's warm and soft and makes me feel indispensible and godlike even when I'm feeling all pukey and wobbly.

Palliative Care

So much has been going on that the prospect of updating here was overwhelming, but I'm determined to get caught up so I can get back to posting smaller, regular updates going forward! The high points of this post: the open abdominal biopsy came back positive for Hodgkins Lymphoma, I've started maintenance chemo, and I got a tattoo!

That tattoo you see above and below is MINE! I just got it! I designed it myself with some important aspects in mind. Now that I know that I'll never again work in a corporate environment, I figured what the hell? The angel wings are meant to give me a feeling of being enfolded and lifted up, elevated out of the moment and carried up to another place. They're also meant to be MY wings, to give me a place to go to in my mind where I can feel like I'm flying and am strong and powerful up high above everything where I can only hear the sound of my own mighty wings. The green leaves are part of my "happy place" -- you know, that happy place you go to in your mind's eye when you need to escape your present reality. (My happy place is truly beautiful and multisensory, and it has helped me so much during some of the harder moments throughout my journey.) Anyway, my happy place includes lying on my back in lush, fragrant grass looking up at rustling tree bows whose green, green leaves cross over one another and the blue sky peeps through along with dappled sunlight. (There's a lot more, but I'll spare you every agonizing detail. ) The word, "Grace" is meant to encompass so much; not just the way in which I hope to travel through the remainder of my days, but also to serve as a reminder to appreciate all the gifts we receive in this life and to savor every moment -- for each one is a gift.

In other news, I started my new chemo regimen yesterday. I'll return to that topic in a minute, but first I wanted to say that I did end up getting the invasive abdominal biopsy. They tried to do it laparascopically, but once they were in there they realized that it would not be possible; apparently my intestines are larger sized, and that, combined with the fact that the node they wanted was right next to a major artery and completely surrounded by organs prohibited doing the biopsy the easy way. So they cut me open, did what they needed to do, and kept me in the hospital for a few days. I now have 4 new scars on my stomach, one of them 10" long! They told me there would be a 6-week recovery time, and I think that really will be the case because it still hurts, surprisingly.

A cure is not an option for me at this point, so the purpose of this new chemo regimen, Gemzar/Navelbine, is to, for the time being, get me back into a temporary remission for as long as possible. The Gemzar and Navelbine (I'm getting them without the Doxil discussed in that link) won't secure me a forever cure, but I'm really hoping it can buy me at least a couple of years without negatively affecting my quality of life. Ah, the "how much time have I got, doc" question: The least I've got is a year, and the most is probably 4-5, unless something else comes out that is (1) effective and (2) available to me. So we'll see.

I got my first treatment yesterday, and I'll get it bi-weekly for as long as it's working. I'll get scanned in 2 months to see if I'm responding. Then, provided everything's still going well, I'll get a little break -- maybe a month? -- in the fall before going back on it again. So far I feel nauseous and really tired. Yesterday, right after treatment, I got a serious case of crazy shakes from feeling freezing when it was 78 degrees...but no fever. There's also a headache that won't quit, and a general feeling of being hungover. Constipation is rearing its ugly head, also. I've got some pill or another to address all of those issues but the fatigue...and that's what beds are for! There's a small chance I could lose some or all of my hair on this, but it's small. I really will be devastated if that ends up being the case, so I'm trying to just think positively and expect a positive outcome on all fronts.


Emotionally, Lorraine and I are pretty messed up. It hurts so much to think of her being left behind, and I can't believe I'm actually going to die from this cancer. I don't want to die -- I thought we'd grow old together, she and I, and that I'd still get to see and do so much more in my life. There's just so much....it's too much to put down here, it's just too much.

Anyway, I'm trying to focus on savoring all my remaining days and moments while acknowledging that this is just really hard.