My Fears

The crux of my fears about losing GH have been eloquently expressed by Dorcasina, a young widow who recently lost her husband to cancer. She is the mother to a fantastic-sounding three-year-old. In this post, she speaks honestly about all the things she misses about being married. It's everything I fear most. I'm so sorry she's going through it.

Weekend Blues

Radiation Update

GH and I went to his radiation consult yesterday. We're plowing ahead with radiating the spleen, the hope being that the spleen with shrink down and stop hoarding/eating platelets. This is an uncommon procedure; it's much more common to just take the spleen out. But the doc feels like the potential benefits outweigh the risks, so we'll give it a shot.

GH goes back to the inconveniently located downtown hospital again tomorrow for another consult/planning session, then starts the treatments on Friday or Monday. Side effects are nothing new: nausea, vomiting, fatigue. The doc cheerfully said, "We'll give you plenty of anti-emitics for the nausea!" to which we replied, "Which ones? We're all stocked up on Zofran, Compazene, and Decadron. And Ativan!" I've joked before that we could probably finance our kids' education by selling GH's drugs on the street, but that was before someone stole his OxyContin.

I am plagued by The Hunger That Knows No Bounds today. I've had a granola bar, some cereal, some cheese popcorn, and two clementines. And it's only 11:30! I think the cheesy pregnancy aerobics video I did this morning is a factor. The video was led by Kathy Smith, all decked out in a leotard and accompanied by a posse of preggos in coordinating unitards. Very 80s hair and lots of puffy socks. The workout was actually pretty good, but as a break in the middle, Kathy and the Preggos did "The Pregnancy Shuffle," some kind of odd rap. It included the lines, "You should pass on the bagel/And do one more kegel!" Um, OK. Thanks for the tip.

Going to the BSO tonight. Trying to be excited. I love the symphony, but I'm so lazy! And I have a paper and take-home test for class this week. I suppose I should enjoy my last season of symphony tickets, though. No BSO renewal for us next year!

It's a girl! And a boy!

Ultrasound went great today. We really liked the Maternal-Fetal Medicine specialist we saw. He said that the babies look perfect and they weigh about 8 oz. each. The presenting twin (the one positioned to come out first) is almost certainly a girl; she is positioned right below my belly button and it was hard for the doc to get a clear shot. But he put the odds at 95% girl. The non-presenting twin is breech and is most definitely a boy.

Hurrah!

All my vitals looked good, too. I've gained 16 pounds and my blood pressure was only 110/68, so that's looking good. I have developed a hemorrhoid (sorry for the TMI), which really sucks. But it's a small price to pay for healthy babies.

Ultrasound image on top is the girl, a nice full-profile view. She is on my right side. Image on the bottom is the boy, just a head shot as he was too wiggly for a full view. You can see his ribs really clearly in the image, which is interesting (at least to me). They are perfectly positioned to kick each other in the head in utero. Great.

Merci Beaucoup

Just a little thank-you note to those of you who have been leaving comments. They mean a lot to me. I was very cautious at first about privacy and getting the URL for this site "out there;" as time has gone on, I've posted it in comments here and there on other blogs and have been pleasantly surprised to see that it's brought some people to the site.

Thanks for all your kind words. I hope you want to keep reading.

Always something . . .

GH's treatment yesterday went well, for the most part. He was supposed to get a combination of Gemzar and Avastin, but he ended up only getting the Avastin. The oncologist has set up a radiology consult for us on Monday to discuss radiating GH's spleen in an attempt to shrink it down and thus boost the platelet count. I guess this radiologist has a lot of experience with blood disorders and cancers and has used this treatment to some success on other patients. GH's oncologist gives it a 50/50 chance of working; the radiologist may have a better idea of what the odds are. In any case, it's a less-invasive option than spleen removal, so it seems worth exploring. It looks like GH will have the consult on Monday, be fitted with some kind of device that guides the raditaion on Wednesday, and start the treatments a few days after that. The treatments themselves last only 5-10 minutes but are given every day for 2-3 weeks. GH is worried about scheduling the treatments around work, but I'm sure his employer will be understanding. They have been so far.

In any case, radiation and Gemzar don't play nice together, so the Gemzar is on hold until the radiation treatments are over.

Tomorrow is Big Ultrasound day. Hooray! I'm excited and nervous, but mostly excited. There's a part of me that feels like we're spoiling things by finding out the sex of the twins, but mostly I can't wait. My coworkers and classmates are all placing bets.

I'm also excited to have the day off tomorrow. It will be nice to spend the time with my parents and to be away from work for a day. I've had a productive week and I'm ready to relax.

Money, Money, Money

One very lucky thing for GH and me is that we have excellent health insurance. We are covered by a major HMO through his work, and his work pays for close to 90% of the cost of the insurance. Even better, we live in a state with mandated infertility coverage, so the $11,000 that would have been out-of-pocket for us in nearly any other state of the union to create the twins (not including medication) turned out to be about $200 out-of-pocket INCLUDING the meds. With few exceptions, GH has been able to get approval for meds that require an insurance petition, including some that cost upwards of $2,000 a month. The surgery I had last year cost us nothing out-of-pocket. Once the twins arrive, they are already covered under our HMO with no additional cost to us. I am grateful every day that I don't have to worry about our medical bills dragging us into financial ruin.

What just might be the end of us, though, is daycare. Just for kicks, I looked at prices at the daycare coops at a local, very good university. $2,000 per child, per month. So for us, $4,000/month. HI. After taxes, that's basically what we're taking home. Forget the mortgage! Forget eating! But the twins will have good daycare.

That is, of course, one of the most expensive options, and one we certainly won't take because we just can't. But my searches are not turning anything up that will be under $2,000/month for the two of them, which is not particularly doable either.

Of course, I should have taken this into account before we decided to have kids. But given the time pressure we're under, what was I going to do? Not have them because of money? Argh. People who make way less money than us manage to do it.

We could get rid of one of our cars. Start clipping coupons. Sell our condo and move to a one-bedroom in a less-nice part of town. It's not that we don't have options, I just don't particularly like them. Honestly, though, you think that I'd be used to that situation by now.

I do plan to ask the woman who cleans our house (another expense we could cut!) if she knows anyone who might be looking for a childcare position; ideally, we'd like someone to come to the house to care for the twins to minimize the morning and evening drop-off/pick-up hassle. And while the kids are babies, I want someone who will love them, feed them, change their diapers, hold them, cuddle them, sing to them, etc. At four months, they mostly need love, not Baby Mozart and educational games.

This is a big stressor for me right now. But I did manage to cross one thing off my list yesterday: we're signed up for our baby training classes: Parenting Multiples in March, Breastfeeding in April, and "Infant Survival Training" in early May. All are just one-evening classes. I'm looking forward to meeting the other participants and to learning some stuff. As an only child, I don't have much baby experience, so it's certainly time well spent.

Chemo today. Power to the platelets! GH is picking me up at 11:30. Hopefully the oncologist will have some news for us about spleen treatment options.

Weekend Meltdown

I actually said the words "Right now, GH is dying" aloud this weekend. To real people. In a restaurant. Not just any restaurant: IHOP. As we ate pancakes.

It sucked.

I was out with friends, catching up after not seeing each other over the holidays and into the new year. They asked about GH's treatment. And, because I'm tired and it's been a rough few weeks, I was really, really honest. Let's face it: he's not getting treatment right now, the cancer is growing, and for all intents and purposes, he's dying.

People have a tendency to assume that because GH is still working, looks and feels pretty well overall, and that we're having twins, he must be "better." He lost his hair for a while, but it came back, so he must be cured. Ha ha! I wish. But no. We never made it clear to people when he was diagnosed that this is a terminal disease, partially because we weren't ready to admit that (and often I'm still not), partially to protect people, and partially because it's just so fucking deomoralzing and we wanted to keep all of our spirits up.

Overall, I don't regret that decision. You never know what might happen, and a part of me continues to believe that there is a way we can beat this. But there are times when I wish that I'd been more clear with people so that when the going is tough and I need to work out feelings on death and dying and loss, people weren't so taken aback.

In better news, we had a great weekend with my mom and stepdad. It was amazingly beautiful weather. We ate lobster, took a long walk, watched football, and my mom and I cooked a lot, which we always enjoy. It was fantastic. Wish I was still doing that instead of being here at work. Only two hours 'til quittin' time. I can probably makke it.

Who knew I'd ever care about garage doors?

We have a one-car garage with an automatic door. A few weeks ago, it started acting up. You'd pull the car in, push the button to put the door down as you exited, and the door would go all the way down, pause, then go all the way back up again. While a large part of me felt like, "Oh, well, who really cares?" because we don't store anything (except the car) in the garage and I'm not too worried about car theft in our 'hood, another part of me felt like I needed to be a responsible homeowner and Get This Problem Taken Care Of.

This created issues for me.

1. Who the hell do you call to fix a garage door?
2. I am cheap, no, no, frugal. I'm frugal! And I feared that the Garage Door Fixer Person would charge me a lot of money for something simple that I could do myself, and then I'd feel hoodwinked. Yes, HOODWINKED.

So I procrastinated until my lovely, handy stepfather came to town. And I am pleased to report that my slackerdom paid off. Between the two of us (well, mostly between him and himself with me watching) we fixed the door! For free! And even better, we fixed the automatic light that should have been coming on every time the door opened but that had never actually worked.

We rock. OK, my stepdad rocks. The whole thing made me feel Powerful, as if the same situation arises again, I would be able to fix it on my own.

Amazing what you are forced to learn when you buy a dwelling.

At least we've got something on the schedule

GH is going in for chemo (Gemzar + Avastin, a combo that was very helpful to him in the past) next Wednesday. Hopefully his poor platelets will be able to handle it. It feels good to have something on the schedule even though there's part of me that is skeptical that we'll be able to keep up this regimen.

In the meantime, GH's oncologist is looking into a few other options. She's going to talk to a radiologist about radiating the spleen to reduce its size; this could bring the platelet count up. She's also going to check into CyberKnife, although she doesn't think it's used on people whose cancers have spread as far as GH's has.

I'm glad today's Friday. GH is doing a consulting job after work today, so I have an evening at home by myself. In theory, I love having evenings at home by myself, but right now they are bittersweet. I want to spend every evening with GH. At least I can get some chores out of the way tonight in preparation for my parents' arrival so that GH and I don't have to spend our together time doing those. And I'll take some time to read, rest, relax. Eat some good food. We have all manner of yummy things in the house watiting for my parents' arrival.

It's Official

I talked to Dr. E7070 yesterday. GH's platelets are lower than ever, around 50,000. The study requires a minimum of 100,000. If GH's platelets were still in the 80K range, we probably could have successfully petitioned for an exemption. But 50K is too low. Clearly we need to figure out the underlying cause of the low platelets. Clinical trial aside, none of the other obvious treatment options are open to us with a platelet count of 50K. And not getting treatment is not an option that I'm willing to consider right now. Not getting treatment means death. That's really all there is to it.

We do have two possibilities to discuss with GH's regular oncologist:

1. Removal of GH's spleen. His spleen is enlarged. This is probably due to pressure from his primary tumor on a vein leading to the spleen. From what's been explained to me, an enlarged spleen is a spleen that is trapping platelets and holding them inside. If you take the spleen out, voilà! Nowhere for platelets to congregate, they circulate around, and your platelet count shoots up. The surgery is fairly easy (laparoscopic), and you can live without your spleen. The problem is that your spleen is a fairly important part of your immune system, and cancer patients are already by nature immunosuppressed. So maybe not a great option, but the benefits could outweigh the risks.

2. A radiation procedure called CyberKnife. I'm not sure it's appropriate for people whose cancers have spread, but if it is, it could be worth exploring. I'm a member of a pancreatic cancer listserv and I know of at least one member of that group who has been treated with CyberKnife to good results. So fingers crossed on that option. On the surface, that seems much better than a spleenectomy.

Meanwhile, life goes on. I have a paper due for my class tomorrow. My parents get here Saturday. We have done nothing, I repeat: NOTHING, to get ready for the twins. Oh, well, they can sleep in a sock drawer! What do they care?!

Fuck you, Cancer.

Slipping Away

For the past week or so, GH has had a lot of weird medical issues (cancer aside). His stomach has been bothering him--he'll feel queasy, or even vomit, or have stomach pain. He has rashes everywhere. He has an infected hair follicle. His back hurts. His platelets remian stubbornly low.

It's hard not to feel like this is related to the cancer, that the cancer is getting out of control, taking over his body, trying to shut him down. It's really scary.

I have this horrible feeling like he's slipping away from me, that I can't hold on. There have been a lot of tears these past few days. My temper is short. I have no time for anyone's complaints but my own.

No-Go

The clinical trial at Dana-Farber is a no-go, or at least that's the way it sounds. GH got a message from Dr. E7070 (that's the name of the trial drug) yesterday saying that GH has "a long way to go" before he's eligible for the trial. Dr. E7070 wants to talk to GH about the situation, but from the sounds of the message, this is not the path for us to take right now. Great. GH has calls into Dr. E7070 and his regular oncologist so that we can figure out what the hell to do. We need to do something. Every passing day gives cancer a chance to take the upper hand.

No News, Please Be Good News

We have not heard a word from the doctor running the clinical trial at Dana-Farber. GH had his blood test; not sure what the results were. Not sure where we stand in the petitioning process to get him in the study. Not sure when he'll go in for more tests. Calling has produced no results. GH is going to call his regular oncologist today--she's very good about returning calls--to see if she can light a fire under someone at D-F or at least get us some info about what's going on. It just feels like we're losing ground with each passing day. We need some ACTION.

Action is also needed on the work front. Man, have I been lazy at work. Must change this. Starting, ummm, NOW!

Finally Friday

Yesterday was long.

I swam in the morning at the Y, which was great. Went to work all day, which was work. Went straight to class, which was interesting. Called GH and found out that he was suffering from a stomach bug, poor thing. Stopped on the way home to buy him the essentials: soup, ginger ale, chips, fruit. Did some nursing. Fell into bed at 10. Slept like a log until 12. Then couldn't sleep at all after that. Tossed. Turned. Read for a while. Ate a snack. Tossed more. Turned more. Finally fell asleep at 6:00. Ugh.

I realize that in the realm of long, bad days, this is hardly something to complain about. It was just a busy day followed by a bad night's sleep. I just get so twisted up in knots when GH doesn't feel well. Has the cancer spread? Is the cancer more active? Does he just have a bug? Worrying is so draining. I know the worrying doesn't help anything, but it's nigh impossible to just turn it off.

GH is home from work today resting. He feels fine, but better safe than sorry. He was supposed to go do a consulting job this afternoon, but that's off, too. Hopefully a day of R&R will get things back to our version of normal.

2005 by City

Following the lead at kottke.org and megnut. com, here is my 2005 by cities. I had to spend the night in a place for it to make the cut:

Boston, MA*
Portland, OR*
Detroit, MI*
Milton, VT
Portland, ME
New York, NY
Chicago, IL
San Antonio, TX
Road Town, Tortola, BVI**
St. Thomas, USVI**
Nassau, Bahamas**
Juneau, AK**
Sitka, AK**
Ketchikan, AK**

Kind of a paltry list by my normal traveling standards, but it wasn't exactly a typical year. The list for 2006 will likely be even shorter due to the arrival of the twins and the associated difficulties of traveling with tiny people.

*Multiple visits on nonconsecutive days.
**Visited on a cruise, so technically no overnight stay.

Revelation

That might be a bit grandiose. But something occurred to me a day or two ago, as GH endured yet another marathon lecture from his mom over the phone about the same old shit. The lectures, they are endless! GH will often just put the phone on the table next to him and go about his business, checking every five minutes or so to see if she's STILL TALKING. It's crazy. And it gets especially crazy when things take A Turn for the Worse, which is certainly what things have done lately.

But here's what occurred to me: I don't think GH's mom has ever really, seriously thought about the fact that GH could die. I'm sure it's crossed her mind, but I don't think she's ever let the thought stay in her conscious mind for a while. It's not a thought one wants to eagerly welcome, that's for sure, but it's a thought that I feel like I have to let myself ponder and accept as a part of my reality just so that I have some level of prepardness should it come to pass.

I know we all have different ways of coping with things, and GH's mom just might not be able to handle the idea of GH dying. Goodness knows it's not an idea I enjoy, it's just an idea that I have to acknowledge so that I'm able to reject as 100% out of hand some of the crazy shit she's willing to promote as a way to keep GH alive. While both GH and I take his disease very seriously, there has to be a balance between cancer obsession and actually living a "normal" day-to-day life. For his mom, any way of life beyond Cancer 24/7 means that we're not doing everything we can to fight. She just doesn't accept that sometimes dinner and a movie is the best thing you can do.

Speaking of fighting, GH is enrolling, or trying to enroll, in a clinical trial at Dana-Farber Cancer Institute. The trial has shown to be effective in a few pancreatic cancer patients, which is promising. But you have to have a platelet count of 100K to enroll. GH falls well short of that, and has for months. The study doc is going to petition the drug company running the trial for an exemption and seems confident that we'll get it. I sure hope so, because if that doesn't work, we're pretty much out of obvious options.

On a more positive note, I saw the twins last Friday. They look good, and all of my vitals were where they should be. I have to go in for a thyroid check next week, then we'll have The Big Ultrasound on 27 Jan at which point we should find out if we're having boys, girls, or one of each. Hooray! That will be fun.

Thank goodness there's something to look forward to.

Resolutions 2006

1. KILL CANCER.
2. Be a good parent.
3. Read 50 books. (I'd better get the bulk of this goal accomplished by June!)