Mom started her chemo tonight. I mean, right now, as I type this they’re filling her with a poison designed to kill the cancer before it kills her. A little bitter? Damn right I am, but I’m happy for her more than anything.
Here’s how it started:
1. Got a call at home from my dad who tells Jen (I’m in the office working on a down server) that they found out what kind of lymphoma it is. It’s called Diffused Large D Cell Lymphoma.
2. I called my dad on his cell and he tells me that it’s a good thing that they caught it when they did, a few more weeks and she would have been “a goner.”
3. The steroids her doc gave her, it turns out, may very well be the only way she’s gonna get through this (and she is gonna get through this, the docs are super-confidant). God bless her doc, he had the foresight to get the treatment going soon and this helped stop or slow down the cancer.
4. Called mom at her hospital room, left a message. Called her cell (both per dad’s recommendation by the way) and got her voice mail. Left her a message.
I’m flying up to see them next week after my Microsoft seminar in Seattle. I fly up Tuesday, do my thing until Thursday afternoon and then haul ass up to my folks’ place for Thursday – Sunday then fly home and get back just in time for Claire’s nap to be done.
I talked to her for a bit last night from her hospital at University of Washington. They’ve got her there for more tests and, if they can determine what specific type of lymphoma she’s got, might even begin treatment.
She’s in very good spirits and told me that the docs are taking fantastic care of her. Her room overlooks Lake Washington and she told me there’s a beautiful dogwood tree right outside her window. She’s got her own private room with its own phone number and internet access and the food, in her words, is delicious.
Just got off the phone with my dad and he had some pretty good news about my mom.
This sounds very weird to say, but the good news is that she’s “only” got lymphoma! The myelofibrosis isn’t there after they ran a few more marrow tests. Now that they know, they can start working on treating, if not curing the cancer. She’s going to UW next week for some meetings and they’ll probably work with her on scheduling out a treatment plan.
Sorry for no updates but we didn’t have any new information so I didn’t really have anything to post. Until today.
The good news is we now know what she has, and it ain’t LD. Turns out she’s got two separate things going on with her at the moment. The first is Myelofibrosis which is a “mild” type of cancer that affects the bone marrow’s ability to produce the “juice” it’s supposed to. It’s treatable, if not curable, by taking steroids.
The other thing she has is some sort of Lymphoma, but they’re not sure what type it is yet.
They can’t start treating the myelofibrosis yet though because they believe she still has some sort of infection and taking steroids would cause that infection to get worse.
Her breathing problems aren’t really breathing issues. Her lungs are processing the oxygen just fine, it’s her blood that isn’t. The myelofibrosis is causing her body to not produce enough blood cells to process the oxygen so she’s going to be attached to an O2 tank or O2 generator for the long term.
Everyone is optimistic and a huge weight has been taken off our shoulders since we now, at least, know what’s wrong with her and can start dealing with treatment.
I just wanted to thank all of you who have reached out over the last few weeks wishing my mom well. She, and I, really appreciate all your well wishes, so, thanks!
**UPDATE 3/20/2008 2:20 PM PDT**
Here’s a very informative link about myelofibrosis, also known as IM. It’s a PDF so it might load slowly.
Just got off the phone with my mom in her hospital room. She’s in good spirits and is hoping to be released today.
Here’s some things she’s told me:
* They’ve got her off of the IV antibiotics and she’s now taking antibiotics orally.
* She had a chest x-ray this morning and is waiting for the results.
* Still hasn’t been told what she’s got but she says she saw her doctor and the lung specialist talking in the hall a while ago.
* Hoping for news within the next hour or so.
* She says the hospital’s been treating her very well and has been very attentive and thorough.
* They gave her Ambien the last two night to help her sleep.
That’s all I’ve got for now, more information as I get it.
Thanks everyone for your well wishes by the way, I’m grateful (more than you know) for your thoughts.
I spoke to my mom this morning and they’d taken her off the IV drip but she’s still on O2 to help her get more blood oxygen. She was in good spirits and when my brother called me an hour or so later after visiting her I got another thumbs-up as well.
Just got a call from my dad 20 minutes ago letting me know that the docs were concerned about a blood test result and think she might have some fluid in her lungs so they’re, right now as I type this, scoping her lungs through her nose to take a better look. Dad and Erik are going to be swinging by the hospital this evening to check in with her.
My mom calls me yesterday from the hospital telling me that they think she has Legionnaires’ disease. Personally, I knew very little about the disease but didsomeresearch and now feel like I know more about the issue.
She’s in pretty good spirits and they’ve got her on IV antibiotics, but they’re still not 100% sure what she has, so they’re calling it “atypical pneumonia.” They running a culture on her sputum and will know for sure when those results come in, hopefully today.
I’m flying up to Seattle to drive up to their place on Friday, she says she should be home by then, to spend the weekend with her and my dad.
Keep her in your thoughts for me, but when caught early, it’s really not terrible dangerous.
Still, it’s (allegedly) Legionnaires’ Fucking Disease! when my mom gets sick, she doesn’t mess around, she goes balls out!
Last weekend, Jen, Claire and I joined the Johnston Clan (Caley, Sonya, Lex and Logan) and the Eppenbergers (Tom, Shelly and Lane) for a little adventure.
We weren’t sure we were going to be able to go as Jen had been terrible sick with the flu but she was starting to feel better and took a chance on going with us. It turned out to be just fine.
We started out by driving to Oakland to take the train from Jack London Square to Sacramento. On the way we made the usual train stops (I assume as I’d never been on this specific Amtrak line) and when we got to Suisun City we came across this beauty:
Claire claims it is a “mommy” train because it looks like a girl and who am I to argue with her?
When we got to Sacramento we took a quick five-minute walk from the train station to the Vagabond Inn and dropped off our bags. Once we got settled, we hoofed it over to the Train Museum and spent a few hours watching the kids run around and enjoy the museum:
I’d been to the museum before quite a few times when I was younger and once with Jen when we were still dating, but it was the first time for everyone else but Tom. I think Tom and I agree that the displays haven’t changed one bit since we were kids.
After the kids got naps in (well, Claire and Lane at least), Tom, Caley and I walked around Old Town Sac for a while and enjoyed some coffee and, as Tom mentioned in his blog what may very well be the world’s smallest comic book shop. As I’m a regular at the shop here in Livermore, I didn’t purchase anything but Tom and Caley did partake and it did my geeky heart proud.
We went to La Terraza for dinner and while, it tasted pretty good, it did a wonder on almost everyone’s stomachs. I wouldn’t recommend it. The only cool thing was watching Logan assed out on a few of the chairs:
I got some pics of him posed with some beer bottles too, but haven’t posted them on Flickr yet…
We got back to the hotel and played with the kids (and each other). There was a slight issue when Logan locked himself and Claire in the Eppenberger’s room for a while, but all in all they (and we) had a blast.
We got up the next morning, ate at Denny’s which was right next door and hoofed it back to the train station. The only time we really got hit with any bad weather was on the walk back to the train station when the skies opened up and it started raining. The rain wasn’t too bad, it was the wind that really kicked our asses and broke Jen’s umbrella.
We dried off at the train station and I got this picture of a a mural on the wall of the station:
We got home none the worse and have very fond memories of the trip. We totally need to make this a regular thing!