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|Sunday, January 13th, 2008|
|Mollie's not here anymore...
This is Jonathan, Mollie's boyfriend.
For those of you who read this journal, you know that Mollie has been battling an increasingly aggressive brain tumor. On Dec 28th, she died at the emergency room at our local hospital. I was with her. It was completely unexpected. She was lucid, funny, and nurturing until her last moments.
We've already held a memorial, and Mollie was cremated. We intend to scatter her ashes in the spring, probably at one of the dog parks where we took our boys. Nothing gave her more joy than watching Wally run up and down the beach like a fool with the other dogs.
Mollie was very dedicated to her work at Planned Parenthood, so we've been asking anyone who wants to memorialize her to make a donation to their local PP. Any donation in support of children or cancer would be appreciated.
I won't be updating or reading this journal after this. Anyone wishing to contact me or her family can reach me at jnsimon (at) pacbell (dot) net.
|Friday, December 21st, 2007|
|No longer a chemotherapy infusion virgin
So, let me tell you something that impressed me about the infusion center where I spent my day yesterday. The nurse easily got my IV in on the first try and I don't even have a bruise. This is remarkable for me, and gave me a lot of respect for her skill. It's not tender, either. The nurse was very upbeat and positive and clued-in to me and smiled and laughed a lot. Really, it was a good experience. At one point I heard her refer to Jonathan as my "math major husband." So Jonathan and I laughed at that for awhile since he is an engineer and we're not married. In any case, if it weren't for the numbers of crazy drugs, it would have been a nice, if boring day. They even gave us cookies and beverages. Here are the drugs I got in my vein: benadryl, an anti-emetic whose name I forget, Avastin the anti-angiogenesis medication for which the insurance generously paid, Camptosar the chemotherapy itself, Atropine for belly pain, Ativan for nausea. Muy generoso. Next time I need to think up more complaints so they'll give me more. Just kiddin, but who knows what I'll need? If I need it, I'll take it.
I'm not happy *in any way* about being on infusion chemotherapy. I'm making the most out of a sad situation. The best-case situation here is that this will go on indefinitely. What does that mean, really? (mental note to self--ask neuro-oncologist what that means, realistically.) The nurse said that as long as the meds prevent growth, they are considered to be effective. And if we get shrinkage, that's gravy. So, I'm hoping that right now the meds are shooting all their guns at the growth, which I like to call the marshmallow creme. Which is what it looks like to me on the MRI--white and swirly. Not sweet and confection-like. I'm not a fan of eating marshmallow creme, unless it's mixed into other tastier ingredients.
When I think about my situation, though, it really bums me out.
Scenario 1: We control it with these drugs and I spend the rest of my life on every-other week chemo. Doesn't sound so fun. That's why I need to ask Susan Chang, my neuro-oncologist, what's likely to happen.
Scenario 2: We control it with these drugs but the insurance gets stingy and won't continue to pay for the Avastin ($13,500 yesterday alone) at a certain point.
Scenario 3: These drugs don't touch it. Then onto chemotherapy number three for me. Who knows what form that might take. It could be good, but every turn is another option used up for me.
All of these remind me the sad thing about this for me: it will eventually kill me. It's funny how my position to this fact has changed. A few months ago, I felt pretty untouchable. Confused from the meds, but optimistic
about my outcome. Hopeful that the radiation was going to really help, since I hadn't had it before. And being cancer, it threw a curve ball at me and kept growing, evidently. That's the constant with cancer--surprises. Good ones, bad ones. But you're never really in control. You can eat well and be positive and spend time with good people and see good movies and blog your little soul out, but cancer does what it wants. Seems like maybe today I should don my "fuck cancer" hat, eh?
|Tuesday, December 18th, 2007|
Insurance is paying for the medications...the chemo and the anti-angiogenesis med. Woohoo!
|Friday, December 7th, 2007|
Had an MRI on Wednesday. It shows more tumor growth. So, I had surgery, chemo, radiation, and still have tumor growing in my damn head. We're going to try to get me new chemo and anti-angiogenesis medications approved by insurance. Wish me luck.
Yes it was a crappy day for me.
|Friday, November 30th, 2007|
|another layer of sick
I've been focusing on my recovery from the radiation treatment...good days but feeling spacey and weak. Today felt especially bad and zombie-fied. I realize that I'm actually sick now, like I have a virus of some sort on top of it all. So I took a narcotic and am about to crawl into bed. Yeah. Long sleep I will have.
|Wednesday, November 21st, 2007|
|Radiation: completed (woohoo)
So I had my last radiation treatment today. It's a relief to be done, but boy it's kicked my bootay. I spent the day lying about, and it's nice to have mom here to take care of me and make dinner and that nice stuff. It's great that she relishes in this caretaking, as well, because I'm exhausted. The brain fry is for real, I tell ya. I'm tired and spaced out and just want to lie about. I do hope that I clear up in the next few weeks and am ready and able to go back to work.
I'm bald now, btw. I had Jonathan shave off all my hair last night. I don't like that, but there's a catharsis to it and I guess I get to watch it grow back now. My mom bought a skein of black cashmere yarn today and is about to knit me a skullcap, which I'm excited about. I kind of want to be a bit loud and proud about my bald head, but it's cold out now and I need to keep my little head warm.
I'm going to bed now and hope to have a nice little Thanksgiving tomorrow. I hope that you have a nice one too.
|Tuesday, November 13th, 2007|
|update on me
1. I have a crew cut now. Not happy about it, but it seems to be the best thing for my hair right now.
2. I have more hair growing on the top and bottom of my head now, with bald patches in between. It's kind of a scalloped look, actually. Not happy about it, but what can I do? Radiation is having its effect on my hair growth patterns.
3. Scar across my head from ear to ear. Well-healed. I've had this scar for years and years. It's not any worse now, but still there. Not happy about it, but there it is.
4. My sister is here, which is nice. Last week I started to get spacey and Jonathan had my mom come for a week and now Heather is here. It's good that they came, and it's nice to have a visitor.
5. Six more radiation treatments left. Will be glad when they're done.
6. Need to go to bed. G'night.
|Tuesday, October 30th, 2007|
|Writer's Block: Happy Halloween!/opera plans
Boo! How did you celebrate Halloween?
I'm going with my BF to San Francisco to the opera to see The Magic Flute. I think it will be nice and will avoid the boys (our doogles) barking every few minutes when the doorbell rings. Ick. Because they still will bark their little doggie heads off. It will be a challenge for them, the crazy fools that they are. Before we go, we'll leave nice treats with them so they have their own task to work on. Which may be as simple as getting the treats out of the treat stick. Which is fun for them, btw. And satisfying. And delish, as long as we put tasty treats in the treat stick. Really, I think it will be a good evening for those crazy boys....although maybe a better evening for us at the opera in San Francisco. We will have a nice dinner of some sort, which won't involve us getting delicious treats out of a treat dispenser....and yet, will be tasty and nice and relaxing. I'm trying to remember what's a good place to eat in the same neighborhood as the SF opera house, and at the moment, I'm drawing a blank. Damn me. But by tomorrow evening, I will have a few places in mind. Yeah! What a great evening we will have, trick-or-treaters aside. In fact, our avoidance of trick-or-treaters is what will make our evening so nice. By golly. I swear! I also think that the boys will do well without being inside while the trick-or-treaters are ringing the bell. They will be challenged by this while they are in the back yard, but really? what can we do about that? We could put out a giant bowl of candy with a sign that says, "Take one to two pieces and leave the rest for the next group of kids." That's kind of cheating, but ultimately, is fair, I would advocate. We'll see how it goes. If we get home and there's no candy, then there's nothing that we can do about that. The kids took it all, and we'll have to assume that they took it fairly. I suspect that pretty early, the dogs will catch on to the kids walking by and ringing the doorbell. Oh, they'll catch onto this with their bark on. Nice. Friendly. Sweeeeeeet.
Well, my biggest hope for Wednesday is that the opera is fantastic and that we have a good, relaxing dinner in SF. I think we will, I really do. I just need to come up with a list of places today, so that tomorrow, when we arrive in SF on public transit, we can choose where to eat quickly. Yes, that sounds like a good plan. Good one, Mollie! Let's do it.
|Monday, October 29th, 2007|
|Saturday, October 13th, 2007|
|Thailand in October
Today was our original date of departure for Thailand. We're still here in California, and doing fine. Still duking it out with the travel company to get our moneys back. We'll see about that. My sister thought I was really strong today about it being our Thailand departure date. Yeah, yeah, yeah...I've learned that when you have something really sad, don't give it your energy or it will eat you up. So, I didn't let it get me.
|Thursday, October 11th, 2007|
|5 down, 29 to go!
So, on day 3 of radiation treatment, I told the folks that the mask was painful to my nose and they cut that part out. So, the radiation treatment is no longer painful for me. Also, I timed it both yesterday and today and realized that it really, actually, only lasts for 10 minutes. Which is kind of long, but not the 20 minutes plus that I previously mentioned. So, like I said in the previous entry, I'm having a positive attitude and things are improving.
Of course, I've spent the entire past week fighting with insurance and pharmacists and doctors' offices about my chemotherapy coverage. I now have a month's worth sitting right here, and it cost me $40. According to the pharmacist, it's worth $10,000. Which sounds ridiculous, but is probably true. Ridic, indeed.
|Friday, October 5th, 2007|
|Radiation and medical care with multiple doctors
I had my first radiation treatment yesterday. It sucked. It wasn't the *worst* thing in the world, but the mask smashed my nose and the back of my head and I couldn't talk and was so uncomfortable. People kept talking to me, but it never was clear whether they were talking to each other or me, and I couldn't answer back anyways. It was the first treatment in 34, turns out. Unless something changes the doctors' minds.
While I was getting irradiated, Jonathan went to the pharmacy to pick up my chemotherapy meds...which weren't there. I got a prescription on Monday, then found out that the dose was wrong on Tuesday, and called the doctor's office Tuesday. The doctor called in the new dose Tuesday. I then called the pharmacy, who said that the doctor hadn't specified which dose pills to dispense. Arrrrgh. They said they'd call the doctor to get that info, and I let go of it until yesterday when I needed the medications, and the pharmacy hadn't heard from Dr. DaRosa. Of course all this happened after 5pm, so I couldn't really do anything about it then. So, no chemo on the first day of radiation, which is okay with me except that I want this treatment to be good and effective. I think that the sooner I can get chemo going, the more effective this treatment will be.
When I got home from my radiation fest, I called my mom. I was really very cranky and pretty much told her so and got off the phone. Then my sister (who is visiting my mom) called and I told her I didn't want to talk to her, either. They both felt bad for me and were sweet, and I called my sister this morning to reassure her that I'm okay, I was just having a bad moment yesterday. And she got it, of course, but I wanted to clarify that with her.
So, I'm not so nervous about today's treatment. It won't be fun, but every day I will get a little more used to it.
|Thursday, September 13th, 2007|
So, I have an appointment with a radiation oncologist for Monday. I will show up with a list of questions and ask him to sell me on his servicios. Maybe he'll sell me...actually, he probably will. I'm so sad, but am already mostly sold on the notion that radiation give me the best shot right now. The oncology nurse told me that I will probably, over time, have a decreased ability to multitask. I'm known for being able to do a lot at once, and deeply saddened that this will likely be impaired, but--I want to live. That's what it comes down to. And putting all intellectual vanity aside, who can blame me?
|Sunday, September 9th, 2007|
So, as it turns out, I had a grade three oligoastrocytoma. *Not* what I was hoping for (was hoping for grade two oligodendroglioma. The "astrocyte" part of my stuff is much harder to do battle with, and of course we always want lower grade growth.) They think that Mr Fancypants surgeon did a good job and may have gotten rid of all of it. So yeah, good for him. I'm still left with treatment decisions, and without enough information in the world to make them.
#1 Restart chemotherapy, taking it monthly, with frequent rescans of my head.
#2 Chemotherapy with radiation, daily, for six weeks. A tougher option, but may set myself up for cognitive decline in a few years as a long-term side effect of the radiation.
So, how to decide? Do I want to do radiation? Of course not. May have permanent hair loss, may have long-term cognitive issues. But do I want to kick its booty? Why yes I do. Radiation would give me the best booty-kicking chances. But one doctor really recommends waiting for the radiation. He says that he would, because he really prizes his own intellect (I very much relate to this sentiment.) So, it comes down to a quantity versus quality of life issue which nobody can really honestly predict for me. I asked him what I should read to inform my decision and he admitted that there is nothing for me to read. So my sister and her husband found journal articles online, which I'm reading...and they are fairly distressing. After my "five year freakout" six months ago, reading that I have maybe fewer years left is, um, upsetting. And possible cognitive decline? Not something that lights up the way.
So if anyone has wisdom, I'm open to it, but I don't think there is one clear answer for me. Right now I'm leaning towards the radiation option, which I'm told is the standard of care. I think I would be a badass to just do chemotherapy, and really like that notion, but may be a bit to fearful to walk that tightrope. In any case, it is clear that my disease is doing what my disease does, which is to progress and worsen. Motherfucker.
|Monday, September 3rd, 2007|
So, surgery went fine. I'm recovering well, feeling good. My sister was here for two weeks and now my mom is here for a week. Having extra family here is good, if somewhat frequently stressful.
But the frustrating elephant in the room is that we don't have a pathology report yet. So, we know that I continue to have cancer. And yes of course we knew that but this surgery takes us squarely out of the realm of denial which I enjoyed a few months ago. SO, we don't know if my tumor was grade 2 or 3...or a combination of both, whether it was oligodendroglioma or astrocytoma or a combination of both. Not knowing these things means we don't know what treatment modality I'm up for in the next few weeks...most certainly chemo but who knows about radiation. They will also do testing for gene deletions which are a big prognostic indicator. I look forward to knowing if I have them (the gene deletions), although they have lots of potential to really bum me out.
Apparently, the way that the fantastic surgeon works is that he really protects the good brain matter during surgery, and inso doing, may smash up the tumor a bit. So it could still take a few weeks to get path results. Which, frankly, sucks, but what can I do about this now?
|Sunday, August 26th, 2007|
So, I had my surgery on Wednesday and things seem to be going well. Will get the path report next week, which will be the next newsy thing. My face is a bit puffy, but overall I'm feeling fine. Hanging out with my sister and Jonathan, which is nice. Titrating my pain meds and trying to sleep with my head up so the puff will drain more quickly. But overall? Doing well. :)
|Tuesday, August 14th, 2007|
So, I think I have a surgery date...Wednesday August 22. While it's a relief to have a date, and to have a fancy-pants UCSF surgeon, it's still sucktastic overall to have a new tumor in my brain. In case that wasn't self-evident. I'm continuing to ride the brain cancer rollercoaster. I told Jonathan's mother about my surgery date and she said this was very good. I said no, it's not a good situation, but I'm glad to have an appointment. Because mostly it's crap, frankly. And trust me, I'm being as positive as I can, but I'm also being honest.
|Friday, August 10th, 2007|
So, I called in sick this afternoon with a little freakout. I think it was appropriate. They were very sweet to me, especially seeing as my calling in meant they had to cancel a bunch of patients.
But, here is a ray of sunshine: Jonathan has set up the page with our doogles:http://home.pacbell.net/jnsimon/index.html
It's really nice.
|Tuesday, August 7th, 2007|
So, in the "Cancer Sucks" category, it's back. Well, it never really went away. But now I have a new tumor, and it's growing faster than the stuff I've had. Looks like I'm up for a surgery/chemo/radiation cocktail within the month. It doesn't seem real, I'm pretty numb about the whole thing. Waiting for Dr. Butowski to call after he takes my stuff to tumor board on Thursday. (yes there is such a thing as a tumor board, and this isn't my first encounter with one.) Kind of waiting for more news before I really freak out. He's going to ask the "left brain" neurosurgeon what he thinks. (yes they have "left brain" surgeons--can you believe that?)
Right now I feel inordinately lucky to be getting care at UCSF. I'm scared about what's ahead for me. Readying myself to do battle with the insurance company. Where I have surgery and what chemo is covered may become issues.
I'm also bummed that this may affect our Thailand trip...
|Thursday, July 19th, 2007|
Okay, so how dorktastic does this make me, but I'm still so excited. The professional photographer wants our permission to possibly use some of our doggy photos in something else--like a calendar or a book or maybe her website. Of course she can! I imagine that they will be used in exactly nothing, but I'm still signing the release and sending it back to her, stat. Get our doggies' star careers going, man. :) There are some beautiful shots in the batch. And yes, Jonathan plans to post them online, but he's been working his little booty off, so hasn't had time to set up the site yet. They are on my new iPhone, so if you visit me, I'll show them off. ...and yes, the iPhone is very, very cool. :)