Tuesday, June 30, 2009
Suffice it to say the doctor's appointment yesterday went well. How well?
I've been moved from a weekly to a monthly appointment schedule and taken off all daily medications, allowed to go out into public with no mask, and told that in a month I can be relieved of dietary restrictions! That's right, people - one month to sushi!! YAY! Also, I'm having my Hickman catheter (basically a tube with three IV sites permanently implanted in my chest to make it easy to draw blood and give medications) removed next week - which means they anticipate not having to draw my blood or give me meds as often. YAY! The doctor accepted that I am never getting intrathecal chemo again. YAY!! She also said that I probably won't need any more bone marrow biopsies because I'm in molecular remission. YAY!!!
And the biggest news of all? I can go back to work! The doctor is sending me a note and I've decided two weeks is an appropriate time line. I was going to shoot for next week, but then I got the surgery scheduled so I'm holding off. I think I'll start going to the gym to get some stamina back. Even sitting at a desk for 8 hours a day is hard work when you're used to laying around...
This all sounds like great news, but it's not 100% rosy. I'm still going to be on what's called maintenance therapy starting next month. It's pill chemo for two years, and though it's not as strong as IV chemo, it will take something out of me. It also has the possibility of messing with my blood numbers, and for that reason some people choose not to do it. Because I'm in the best kind of remission the doctor went right out and said that she would be understanding if I took that option, but she wants to try it first. So we'll see how it affects me, and if it's intolerable I can just decline. Sounds good to me!
All in all, a great hospital visit.
So my mom went home yesterday. We got her to the airport for her early-morning flight and it was all I could do not to cry. I will really, really miss her. Although it was for a terrible reason, getting to spend so much time with my mom has been so good for me - and you need to be able to pull something good out of a situation like this. I realized how close Mom and I are, and we had so many great times. More than just having someone to help me, I am going to miss having someone to be with me though I'm happy that she gets to resume her life. So it's bittersweet that she finally gets to go home.
Teddy took today and yesterday off work and we've been hanging out. Hooray for getting to spend time as a couple! I have to admit, I have missed that a LOT, as much as I liked having my mom around. We spent yesterday hanging out, and today looks like more of the same. Ahhhhhh, life is good.
Thursday, June 25, 2009
In other news, my mom will finally be going home soon. That doesn't sound the way I intended it... You see, the saint of a woman has been here since my diagnosis in February. Living with us. Away from her husband, job, income, responsibilities, and essentially her life. Oh my god, how do I deserve such a mother's love? I am so happy for her that she finally gets to go home, which I can tell she desperately misses, but I'm also so sad. The bonding we've had in these months has been phenomenal and I'm just not ready to give up getting up and having Malt O Meal with Mom every morning like when I was a kid... I'm also not sure I'm totally ready to live on my own again, doing the grocery shopping, laundry, garbage, and things like that that require carrying things up and down steep stairs that, I admit, I still have trouble making up under my own power without huffing and puffing. I'm getting better, though, and I need to get better faster. Lately we've been spending hours a day just playing Rock Band; it's been a hoot! We've done some cooking, but not as much as we've wanted to due to the heat. So Monday we take Mom to the airport, then doodle around for a few hours before my doctor's appointment.
Which takes me to my next point: where am I going from here? When can I go back to work? I feel almost ready, and I definitely feel ready to replace that lost income! We're not drowning, but we're also not sipping margaritas on the poolside, kiddies. Luckily my insurance coverage continues to be excellent, and I am getting reduced COBRA rates (don't look that up if you don't have to; it's insurance continuation and a pain in the ass). I plan on this appointment being a quiz of the doctor as to how soon I can get back along with life. I won't say that I want to go back to work (I've been pampered and praised for 4 months... would you? ;) but I want to go back to working, if that makes sense. Contributing. I feel lazy. I also would like to hear that some time soon I can go out in crowded places without a face mask and can eat sushi again and even take out the cat litter. My immune system is getting back to normal finally, and I want to take advantage of this fact! So after my Monday appointment I promise to let you all know the prognosis for the rest of my summer, if not life.
Heavy thoughts for the middle of the night. Perhaps I should go back to reading my mom's cat-themed murder mystery fluff. Sadly it is all I have left in the house that I haven't read or attempted to read.
Thursday, June 18, 2009
Tuesday, June 16, 2009
Melissa's headaches got a lot worse yesterday morning so they started giving her dilaudid for the pain. It knocked her out at first, but she's feeling much better today. She still doesn't feel 100%, but she's needed less pain medicine. They took her downstairs for a CT scan last night, to maybe see what's causing the headaches, but we haven't heard any results yet.
On the bright side, her mouth sores are continuing to heal and her blood counts are starting to rise. Good things!
Monday, June 15, 2009
Around 7 or so Friday night they finally got a room for Melissa on the good old 10th floor. The difference between the two sections of the hospital are striking. If I didn't mention before, we were on a general floor. It was noisy and kind of dirty. The 10th, by contrast, is clean and quiet. It's like they're in different hospitals. Amy says that we're spoiled - in a way, I agree. The other floor is nicer than most of the general floors I've ever seen, but it's still a Super 8 motel in comparison. (I'm not saying this is the Four Seasons. Maybe a Best Western or Holiday Inn Express, though.)
(Here starts the part of the post I added today.)
They found a slight bacterial infection in Melissa's blood culture on Saturday. By Sunday, though, it was gone. The antibiotics they have been giving her must have done their magic. Her headches have mostly dissapeared, except for a couple bad relapses. The mouth sores are getting better, and they're doing a good job of managing the pain.
Hopefully, they'll be sending her home soon. But we don't really know when.
Thursday, June 11, 2009
The doctor said she'll probably be out by Sunday, at the latest. I'll keep you posted with any news.
Tuesday, June 9, 2009
You guys have got to be sick of hearing about my sick ass by now, huh? That's all I ever talk about! But here's the latest.
Last week (6/1 - 6/5) I was in the hospital for my last round of chemo. The Wednesday before that I got a bone marrow biopsy. Now everyone I've talked to said that my biopsy came back clean on the most sensitive level (molecular - that's right, I don't even have cancer in my molecules) except if you ask my actual doctor who insists the results aren't back yet. O.o I guess it's possible that everyone else was looking at a different test... but it's a strange thing. So I guess I'm waiting until I talk to her in person on 6/19 to get the real truth on that.
Speaking of squeezing the truth out of Dr. Larson, once again they decided to spring intra-thecal chemo on me at the last minute. In case you need a recap, that's where they do a lumbar puncture, remove some spinal fluid, and replace it with chemo drugs to decrease the risk that I have a nervous system relapse. The problem with this (bwahahaha - one problem anyway) is that chemo drugs make my brain angry. And by angry I mean intensely painful unless I lay flat on my back. Coming back to the original intent of this paragraph, I spoke with the good doctor after I had this intense headache for two weeks last time they did this and she agreed that the risks may outweigh the benefits. Which is why it irked me that instead of calling or visiting my room to speak to me about having doubts in that decision, she sent some other doctor to hardball me. The phrase "Well you're going to need it anyway so you might as well get it now" was thrown about. Sooomeone just lost some professionalism points. The thing is, last time she said she was afraid it had caused chemical meningitis and was unsure she wanted to do any more of this on me. *Massive eye roll*
Anyway, I'm home now. I'm sick to my stomach a decent amount of the time and I have a bad headache, but I went to clinic today and my numbers were good. I'm getting by, and I'm definitely medicated (so don't you worry there, darlings!). I'm thinking about going back to work. Not just now - just thinking. Maybe in July. I think I'll need more IT chemo, but if indeed I'm in molecular remission my chances of relasping are insanely low... so maybe I'll get back in the swing of things again soon.
Monday, June 8, 2009
I've joked about such a thing existing before, but never thought it actually did! Where do I sign up for one?
Then again, you'd miss out on the sweet, sweet taste of coffee. Hmmm.
Wednesday, June 3, 2009
Monday, June 1, 2009
We're back in the hospital for Melissa's (hopefully) last round of chemo. She's in room 1007 Kellogg, if you'd like to send cards or anything. Still no fresh fruit or flowers, please. She should only be here a week, so it's probably still a better idea to send stuff to our apartment.
Melissa would like me to leave you with the following words, "Choco-Choco Milk, Y'all!"