With Awesome Sauce on top! Who? Danny, of course! – Ann O.
I took the afternoon off from working on my Zometa / Novartis Oncology project to go with one of Danny’s nurses to his violin concert this afternoon. I may or may not get around to putting video up…. it was fabulous, so I hope I find the energy.
You know, not that long ago, Dixon and I truly thought that it would be a miracle if Danny could play Twinkle all by himself… heck,it took a miracle for him to be able to sit up AND hold his violin AND hold his bow all at the same time. So to be able to watch as he and his friends played Irish fiddle tunes, some jazz, and Humoresque and the First Seitz ….. what a gift.
From Facebook – Ann O
Sunday night 7/13
Facebook asks, “What’s on your mind?” Cancer. Symptoms of a growing tumor pressing on nerves and blood vessels, and symptoms from the treatment. Like one big, two medium and countless small hematomas from the Lovenox blood thinner shots. And all the queasies from the increased dose of Cytoxan…. Appointments at the cardio-oncologist and the oncologist tomorrow, with accessing my port and chemo shots and labs for yet another drug that would be a great addition to the ones I’m already on, but insurance won’t pay for. I guess so far we’ve been lucky, in six years this is only the second drug that insurance has decided won’t help me, even though the doctors think it will…. and it could be worse, this one is only about 600 dollars a dose for the generic. Plus infusion fees. And labs. Sigh. But at least my eyelashes are growing back….
Monday morning 7/14
We have a win win plan for the non-covered chemo drug. If I sell the unwanted and unloved parts of my totally-out-of-space-in-my-dining-room yarn and spinning fiber stash on Ravelry or ebay, my family will be happy to have that space back, and I won’t have to worry about well meaning friends starting a gofundme site (which we totally don’t need) or even worse, worrying about us. But I refuse to sell socks to get chemo money. Socks are for RR fundraisers, and that is all. (except for the cashmere ones for the Wild Fibers Women’s Center…. Susan Ralph and Richard Lawn at Colourmart donate that yarn, so it will escape destashing ) So there you go, problem solved. Now if we can just cure my anxiety….
ESD – please know to your very core that Ann O is praying for your peace and anxiety relief.
From Facebook -
OK, we started the day with a list, one, two three and four. ONE is done, they got my port with the first attempt, it worked, and I will just keep it accessed as Dixon and I travel all over town today to all these appointments. And we got FOUR – with no room to spare, and of those FOUR thousand white blood cells, in my opinion, not enough of them are lymphocytes (the kind of cells that make the antibodies that fight viruses, for example, essential when you have a six year old who LOVES to share germs…) …But four is four, and so we get to check that one off, too. Therefore now we are working on (infusion) TWO…
Cut and paste from Facebook:
One Two Three Four. Chemo day today. First going to oncology office to get my port accessed. Praying that they get it with ONE stick. And that it works all day. They will check my labs, too. Then I go over to the hospital for the first of TWO infusion chemos. Then home, take my Cytoxan (chemo number THREE) … At 3:30 we meet with oncologist, I have a whole list of things I am worried about, all written down for him. He’ll not have time for the whole list, but I hope to leave with a little more confidence in the plan. Or a new plan. Then at the oncology infusion center I get the last chemo. All, of course, depends on my white cell count being FOUR, as usual.
Here’s the problem. Today, despite the craziness, isn’t itself going to make me feel all that bad. So why am I such a wreck? it’s because once they put those chemo drugs in, there’s no way to get them back out. it’s a totally irreversible process.
Like jumping off a cliff. The actual jump isn’t the bad part, right? But it sets into motion a specific set of consequences…. a chain of events because of the absolute guaranteed death of millions of cells… both good ones and cancer ones. Honestly though, if i had more confidence that the cytotoxic consequences to the cancer cells would be as significant as it will be to all the good cells, I would be happier about the process… today I am not particularly happy about anything. Just scared.
See those little purple cells? They are invasive lobular carcinoma, like mine. Bigger view of the slides makes them look like ants at a picnic, just winding their way between all the good cells. But see how they infiltrate, get all mixed in with the good (pink) cells? That makes them harder to measure, harder to detect, impossible to just cut out. They are nasty sneaky little cells.
Here’s a happier picture. Danny at orchestra while we were at Suzuki Intitute. He REALLY liked conducting and worked very hard at learning some basic skills. I am hoping that tonight, before this irreversible cytotoxic process we were talking about up above really gets started, that I can post the videos and the rest of the photos from our week. That would be lots more fun than thinking about the consequences of cell lysis …
We are at Virginia Suzuki Institute, and settling into a routine of classes, chasing George, rehearsals, trying to keep George off the elevators, practicing and trying to explain to George why he can’t sing along during master classes…
He had to tell Papa all about the music this morning….
My parents aren’t here because I decided I needed them more next week with chemo… So Emily is here and that is a VERY good thing….
Because, look at this photo:
Just in case I can’t get a good photo tonight, I captured this one during our 8:00 rehearsal this morning. Tuesday night at institute is the advanced kids and faculty concert. The first half is the oldest students, who are here doing chamber music since many of them are pretty much finished with the whole Suzuki repertoire, who accompany the medium big kids playing the classic Suzuki pieces like the Bach Double and a Vivaldi or Seitz or two… Even though Emily is not officially attending the institute, she is sitting in for the viola section for this orchestra, along with Brian who is there because he is doing the chamber music thing. As we prepared for camp, I was so happy that both of them would be playing together, it was one of the parts of the week that I was most looking forward to. It always brings me such joy when my babies make beautiful music together…
BUT, here’s the cool part. Danny, despite five hours of other classes yesterday, spent many, many hours practicing on his own, and managed to learn and memorize the second Seitz and will be playing tonight too. So that photo? It has Emily AND Brian AND Danny, all playing together. Look -
You might have to zoom, and you can only see a bit of the top of the back of Brian’s head, but they are all there. Really, truly.
Joy, joy, joy.
There are some moments that remind me why all this chemo and all these tests and all these drugs and everything is worth it. This morning was one of them for sure.
Oh my goodness, all I need to do is let one person know that things aren’t quite as easy as I’d hoped and then the whole western half of the state of Virginia, along with most of eastern TN, comes flying to our aid.
I truly was OK with not being able to give my undivided attention to the fiddle students at their concert, having spent the last 48 hours sitting in class being absolutely amazed that they can learn astonishingly complex tunes with such facility.
I was slightly sad that we missed supper tonight, I am looking forward to our annual trek to Barbara Kingsolver” Harvest Table Restaurant… and I KNOW I didn’t say anything to anybody, but ended up having a wonderful supper in our room with perfect hot soup and a whole box of desserts to choose from. We will certainly be visiting that remarkable bastion of locovoriousness later this week, but meanwhile, the take out gifts brought happiness, for sure
And Nothing can be better than when an overtired, overloaded, out of his element 6 year old finally relaxes enough to fall asleep on your chest… So, it’s all good. Although tomorrow we have three children in two different orchestras all starting at 8 AM… I KNOW I will be having cake for breakfast. probably shouldn’t save any of the wine to go with…. Now if only Anne Francis Bayless and Catharine McClure Jackson and Meg Spear and Danielle and Tom Mathis’s family were here…. Next year we are kidnapping Ginny Foreman and Sarah Ryan Ma for sure. Oh!!!! And did I tell you Mama Rowena Soriano Gonzalez Aldridge and her Ella will be here Thursday??? video tomorrow, I promise. Love and hugs.
Do you remember when Elizabeth asked if she should make Ugly Socks (which might get worn) or Pretty Socks (which will be capital-c Cherished)? Well she chose Pretty with bright & cheerful colors. She made a pair for herself to match. The recipient shall get them this morning!
Updated from Facebook:
So. We are at Suzuki. I am so happy to be here, but far weaker and having more pain management problems than I had thought, Let’s just say I didn’t realize how much we’ve been able to rearrange things back home to give me the illusion that I was still mostly able to do my job…. We all climbed back into bed after breakfast and had a family meeting in the hotel today, and we’re trying a new plan this morning that might tide us over until Dixon gets here Tuesday. You know what? Cancer sucks. I try to be a good sport about things most of the time but once in a while I think that it’s really, really not fair that our family has to deal with it.
- Ann Onymous