We lost two more well-known bloggers this week from the breast cancer community. Rachel was one of our most vocal and productive, in my opinion. She did research that made my head hurt just contemplating, and her strong voice was felt and loved across the web-o-net. Susan was a blogger and mother of young children. Sorrow for these women and their families reverberates across the blogosphere.
I couldn't finally get around to posting again and not mention the losses that are so high in our minds. My 'in memoriam' list is getting longer than my blog roll. Sometimes I think I don't want to find any new blogs to follow, as, in this metastatic cancer world, that means eventually losing a friend. A good run of a few years on a blog is a great run in the realm of metastatic breast cancer. So very very VERY few will be blogging for long, in the grand scheme of things. I'm grateful for the writings of Gaile Sulik, who has devoted her professional efforts to this cause and does NOT have the disease. I find an odd sense of comfort knowing that she isn't in line for the growing other blog roll. I feel like she "has our backs", and will be there to continue telling truths and waking up the population to the realities of this disease, long after many of us have logged off.
I just created a new euphemism. Okay, sure, someone probably used it before, but I gave myself a little snicker when I wrote it.
Sometimes when I keep things in my head rattling around, when I finally sit down to spill them out, they are too jumbled.
I had scans this week. The events leading up to them are just too frustrating to rewrite here. I whined and griped on Facebook about the difficulty of finding a way to use my port for those things which the Bard company assures us Power Ports can be used.
I also cannot sit for very long (another excuse for being remiss in blogging), though I did set myself up to be able to post things from my phone, which I can do lying down. It's more difficult to keep a thought when typing is that slow, but I decided that it is more important for me to start getting thoughts and events down in writing. My blog is not one of note. It's mostly for me, and for the few (you know how you are) who find solace in my ranting. So forgive me if it becomes more journalistic.
I've only been sitting here for a few paragraphs and my back is screaming at me to lie down already.
Pain, yes, the pain has been on the increase since just before Thanksgiving. I started Faslodex about that time as well, after discovering that Aromasin was not going to work, and I just couldn't bear facing the Femara side effects again. CEA numbers have been on the continuous rise. I put the scans off until the new year for new insurance purposes.
Scanxiety mode. The waiting period. Looking at disks from the scans pretending to understand any of it, to brace myself for the results. If it comes back that all this pain is a side effect of Faslodex, then hormonals and I are THROUGH. I will break up with aromatase inhibitors and divorce all anti-hormonal cancer meds. I am into serious pain meds and I will not continue a treatment course that causes this much pain and hasn't budged my tumor marker numbers. I do hope that it comes back that I have no fractures or breaks. I don't want to need surgery.
I heard some words that I liked the other day. I quoted them on Facebook, and am now waiting for someone to realize that I quoted a character from Stargate: SG1, though it is good writing:
I, like Daniel Jackson in this episode, struggle with whether I have made a difference, or made the contribution I was supposed to make, or contributed enough to deserve to rest in peace, in Alma's nap room (Alma 40:12), or in Daniel's case, Ascend. I contemplate asking friends to start thinking ahead of specific things they could share about me at a memorial service to show that I did SOMETHING of importance in this life, to show that I could possibly have fulfilled the measure of my creation, or if the bar was just set low that day. That is my main area of preponderance. I hope I used that word correctly. Spell check did not like it without the prefix.
I challenged a friend to lets come up with something profound or inspirational. Maybe I'll leave that to the writers for Oma Desala, but I did have an idea...
The tech who did my PET/CT scan was named Barbara. She did my last PET/CT in April. She is so kind and compassionate, in a strong way that makes me feel secure AND cared for. Nothing could fall by the wayside with Barbara in charge, and if someone else dropped a ball, she would fix it. The next time I have to do scans, I will remember to request Barbara. Until yesterday, I had been thinking, after the hassles I had with scheduling this time, that I needed to shop around for a new imaging center. But I think I would rather stay with Barbara. I told her she was one of the BEST medical professionals around.
So, in an effort to look beyond my own misery at times, I would like to announce Barbara A. of EVDI as the first recipient of my newly incepted "Favorite Medical Professional" award. I haven't decided if it should be "of the month" or "of the week", or day, or moment, but I feel inspired to take better note of the people who ARE doing their jobs well, and making my disease easier to bear. Thank you, Barbara.
I will be working on the layout of a card to send, careful, of course, to avoid pink. Another day, when my butt and back have more upright time available. Maybe my talented friend A.M. will have some ideas.
Look forward to my new, more frequent posts from my phone, and be warned, they will be less composed and probably more bitchy, I'm sure. This is the point where this has to be more about me, a place to vent and a place to keep record. The typing and spelling will probably go out the window as well. Please do try to recognize the difference between typos and spelling errors. I will rest easier.