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.