Friday, January 30, 2009
Always been a dog person. Now I know why. The distasteful CAT scan from last week which produced the not-so-fun allergic reaction also bought me a call from the oncologist at MD Anderson today.
The scan shows some "densities" within my liver and "nodular areas" within my pelvis. She said the nodules in the pelvis could be artifacts from my recent surgery. The liver? She's setting up an MRI to learn more. If it's malignant, that puts me in stage 4. Four out of four...like three out of four just wasn't good enough. Of course, we don't know anything yet. Because the CAT scan isn't definitive. So now we just wait and worry.
On the bright side (must have a bright side, must have a bright side, she repeats to herself)...if I'm stage 4 I don't have to mess around with this clinical trial. All the good drugs are approved for people with stage 4. Because they've all been tested on people with stage 4 cancer. Because when you're down to an 8% 5-year survival rate, you can throw out all the rules and go at it guns a-blazin'. So I might get that cetuximab and make my insurance company pay for it after all. So there!
By the way, I love it that so many of you are concerned and call to check on me. And I'm happy to talk, tell you about the kids, find out about your life. But I'm kind of over the cancer talk. I'll really strive to post everything I know out here, brutally honest for the all the world to see. But then I'm spent. I can't go over it again and again. OK?
Wednesday, January 28, 2009
After our meeting with the oncologist at MD Anderson last week, I've been doing more thinking and research. The only chemotherapy they've offered me is FOLFOX, a combination of 3 drugs that are the approved standard of care for Stage III colon cancer. That lovely standard of care that produces a 44% 5-year survival rate. I asked about some other, newer drugs that I've read about that are molecularly targeted therapies. Specifically, there's a drug called cetuximab, which is approved to treat stage 4 colon cancer (once it's metasticized to distant organs). For my technically-oriented friends, I put a little more info on cetuximab below.
So what does this mean for me? Well, there's a clinical trial going on at hospitals across the country to compare results between FOLFOX alone and FOLFOX+cetuximab in stage 3 colon cancer patients. The trial isn't being run at MD Anderson, but Baylor's cancer center here in Houston is a trial site. So I've been talking to them. There's a pretty narrow window for enrollment and a specific criteria. I have to be less than 8 weeks post-op and I'm 3 1/2 weeks right now.
So what do I want to happen?
- I want to get accepted into the trial.
- I want my insurance to pay for my treatment in the trial (or at least the vast majority of it). In general, they don't cover clinical trials, but hopefully they'd cover all the costs related to the standard chemo and we might have to pick up the costs to administer the cetuximab (the drug itself is free since it's a trial).
- I want to win the coin flip. Trial participants get randomly assigned to one of the two study groups. So I could enroll and it's still 50-50 that I'd just get the standard chemo. And I really, really, really want the cetuximab.
- I want this all to happen really fast.
I know this may sound flip-floppy. I really wanted to get in to see an oncologist at MD Anderson, but when I did, they only offered me the same chemo I could get anywhere else. And honestly, I know that's all they have approved, but I'd sure like something more effective. I just don't like the odds. Maybe my cancer would respond really well to that treatment regimen. But maybe not. In the majority of people, it doesn't work. I just want something better. From everything I read I honestly believe that cetuximab will be approved as part of the standard of care for stage 3 colon cancer within the next 10 years. But I can't wait that long. So send all your positive energy, thoughts, and prayers and we'll see if we can't stack the deck in our favor a little bit.
From The American Cancer Society's Complete Guide to Colorectal Cancer...
Cetuximab is what's called a monoclonal antibody and it fits, like a key into a lock, into epidermal growth factor receptors (EGFRs) on the surface of a cancer cell. When it fills these receptors, the epidermal growth factor has no place to attach. This makes the EGFR unable to activate the cell and it stops the cancer cell from growing. Unlike chemo, that just goes and kills everything in sight, this type of therapy is more specific and targeted to the cancer cells. Cetuximab alone and in combination with other drugs has been repeatedly shown to shrink tumors in patients with advanced colorectal cancer whose tumors grew despite standard chemo.
Monday, January 26, 2009
Trevor had a little mishap today. He leaned against the chair at the computer desk, it swiveled, he lost his balance and hit his face against the desk. So those wiggly teeth that we were hoping to preserve...
Well, #1 has bid adeiu to his mouth and #2 is likely to follow sooner rather than later.
Trevor's first question (between tears)..."Will the tooth fairy come tonight and leave money under my pillow?" Yes indeedy, so glad he's a glass half full kind of kid. He's not grimacing in pain here, just trying to show me all his teeth.
Thursday, January 22, 2009
OK, so I said I'd post today, but I'm not up to it. CT scan itself went OK (if you disregard having to drink 30 oz. of barium "smoothie). But I must be allergic to the iodine contrast, because a few hours later my whole torso was bright red and incredibly itchy. And I've got a fever which adds chills and aches to my list of reasons that computer time isn't on my list tonight.
Let's just hope tomorrow is better because a certain handsome boy is turning 6 tomorrow and I want to help him have a great day.
Wednesday, January 21, 2009
So we met with the oncologist today, it was a long day and I'm very tired. I didn't realize that it wasn't just a meeting with the doctor, but paperwork first, meeting with the P.A., meeting with the oncologist, the off for bloodwork, then x-rays, then a CT scan. They were backed up in CT and it looked like I might not get in till 8 pm so I bailed out and will go back tomorrow for that. Ah, the luxury of living 2 miles away. Given my exhaustion, I'll just give the highlights and maybe elaborate tomorrow.
They're scheduling me to have a port put in, probably in about 2 weeks. In the meantime, I'll be having a scope done on the remaining portion of my colon to see if there are any other polyps or tumors (they couldn't scope past the tumor before). The CT will give them more info about the lesions on my liver and make certain there isn't any metastasis to my lungs or other organs. Assuming the liver, lungs, etc. are clear, I stay classified as Stage IIIC and start my chemo, probably in early February.
I'll be doing chemo every two weeks for 6 months, so twelve cycles total (I know my mathematically challenged friends appreciate that kind of help, right?). I'll go into MD Anderson for the first day of the infusion, then come home with a pump that will continue chemo for another 46 hours at home. Then I bring the pump back in and I'm done till the next cycle. Except for the side effects, which can fill your days with all kinds of fun between cycles. The chemo regimen I'm doing is called FOLFOX. I'll elaborate more on the actual drugs and side effects tomorrow. For today, I've become quite aware that although I'm feeling much less pain these days, I'm so prone to exhaustion from the smallest exertion. Of course, it didn't help that I stayed up till 3 am last night reading a trashy Twilight novel that Kathryn gave me. But regardless of who's to blame (either cancer or Kathryn, definitely not me), sleep is calling.
Monday, January 19, 2009
"I love you to the car wash and to the bayou and to the ground and to the street and to the clouds and to outer space and to the moon and to Jupiter and back to the house and back to the bayou and back to outer space and that's it."
And that's plenty if you ask me.
Sunday, January 18, 2009
My friends Buck and Kerri sent a cookie bouquet the other day. Didn't know you were allowed to write such PG-13 messages on cookies.
Hayden has been gone to stay with Renee and Marissa since Saturday morning. Since Monday is a school holiday, he won't be back till tomorrow. It's so much quieter without him. Trevor says he misses Hayden, but I think he's actually enjoying being the oldest for a change. As usual, Hayden doesn't seem to miss us a bit. We had a brief phone call last night, but I'd guess that was more Renee's idea than his.
Juliette's top molars have broken through. The bottom ones are still working, but thankfully the last few nights have been a little more peaceful. Hope I'm not jinxing myself by saying that out loud.
I had visitors Friday and Saturday and I think I'm still wiped out from it. I feel pretty good right now, and have even gone a few whole days Vicodin-free, but I tire really easily. Hayden's birthday is Friday and ages ago I signed up to read in his classroom in the morning. So I'm trying to gather my energy to actually do it. It's like Pee-Wee's big adventure, except without Large Marge hopefully.
Wednesday, January 14, 2009
Finally confirmed my appointment with the new oncologist. Seeing her next Wednesday afternoon. And it looks like she's "in-network" on my insurance plan. Could I be so lucky?
In other news, Juliette slept through the night last night for the first time in forever (well, not forever, she slept through the night from 4 weeks - 1 year and then something went awry about a month ago).
Hayden has seen his favorite preschool girlfriend 3 days in a row and he's beside himself. He gets all, "Mom, leave me alone" when I try to tease him about it, but then he says "I'm seeing her again tomorrow" and he can't hide the delight on his face.
Trevor has announced that after he's done with preschool, he doesn't want to go to kindergarten. "Why?", Sean asks. "I don't know how to stay on green," Trevor replies. Hayden's teacher has this red-yellow-green conduct system and Hayden has proudly stayed on green the whole school year so far. Trevor is already doubtful about his ability to behave so well. Honestly, I've got a few doubts myself (especially if he and Logan end up in the same class), but I think we can live with a few wild yellow or red days.
Tuesday, January 13, 2009
I appreciate everyone's respect as we took a little time to digest the situation. I can't say it isn't disturbing, but it doesn't change my resolve. So onward we march...
I saw the surgeon today for a follow-up appointment. He removed my staples (I thought there were 17, but I think it was actually 19 or 20). I've lost about 15-20 pounds from my normal weight and he made some recommendations to try to regain some weight before I start chemo.
He said that the healing from the surgery appears to be going well. He confirmed that the disfigurement (puckering, crookedness, lack of navel) in my scar was really a necessary product of the hernia that was challenging to repair. Down the road, post-chemo, post-colostomy reversal, it can be repaired/improved with another surgery that would put some type of mesh in my abdominal muscles, but that's pretty far down the road.
The surgeon was concerned/disappointed by the pathology results. He recommended that I see an oncologist at MD Anderson, which is still a work in progress. They have my records now and we're working on the next step. The surgeon also said that I still need to have the rest of my colon scoped to make sure there are no more polyps or tumors. Since I had a complete obstruction in my sigmoid colon, they were only able to scope a small portion of my colon in the hospital. So he recommended that in 2 weeks or so, after the stoma from my colostomy is securely healed in place, that they go in and scope the rest of me. Hopefully that is uneventful and doesn't lead to discoveries that would require additional surgeries.
I met with the oncologist who was assigned to me at the hospital. Even though I don't feel like I will pursue treatment through his office, I'm going to continue under his care till I have a relationship established with another oncologist. This doctor would like to put in a port for my chemo next week and have a PET scan done to check for any hotspots that may be malignant and require additional surgeries before my chemo. I'll probably stall on this so I can have it done by the facility that will ultimately be coordinating my treatment. The oncologist indicated he would recommend a 6 month course of chemo, with treatments for 3 days every 2 weeks. He said the treatment will be pretty aggressive and that I should assume that I'll lose my hair. So wig shopping we will go...
That's about all for now. Thanks for all the kind thoughts, prayers, notes, food, and gifts. It all means so much to us to be surrounded by all your love and support.
Thursday, January 08, 2009
The oncologist just called us with the pathology results. We really haven't had time to digest it all, and you can look up with stats as well as I can, but suffice it to say the news wasn't good.
The tumor was large, about 3 cm x 4 cm. It did not penetrate the lining of the bowel, but it was almost there. 9 out of the 19 lymph nodes biopsied showed malignancies. They were able to get a clean resection of the tumor itself, both the margins were negative for cancer.
The cancer cells themselves were grade 2 out of 4, so they weren't a very high grade.
The staging is T3N2. This means stage 3 with more than 4 lymph nodes involved.
I think I'm not really in the mood for rah-rah, good cheer, pick-me-up, enthusiastic comments right now. So it's OK to say nothing at all. Maybe we'll just all have a moment of silence.
Wednesday, January 07, 2009
First full day at home.
First post-surgery shower.
First visit from the home-health nurse.
First time to show the kids my 17 staples (BTW, Dr. McApathetic, would have been nice if you'd left me with a belly button. I know "it wasn't cosmetic surgery", but still, you didn't have to leave me a total freak show).
First time to feed one of my babies a bottle of formula (hard, very, very, inexplicably heartbreaking, but at least I'm here to hold her).
First of many naps with Trevor in the big bed.
First totally unexpected care package from a girl from my high school -- Cosmo and nail polish -- I love Facebook.
All in all it was a good day. Still nothing from pathology. It's hard to have cancer and not know the staging or path forward. I'm a do-something, let's go, impatient kind of gal. So this will be a much-needed lesson in patience for me. We'll take it as it comes.
I haven't really said enough specifically about what a rock Sean has been through all this. It makes me verklempt just to think of how steady he has been by my side, being my voice to the doctors and nurses, being gentle when I didn't deserve it, not flinching at things that would have sent many a lesser man running for the door. It means so much to have someone you can completely trust, completely count on, a partner as if that word was enough. In sickness even more than in health. How did I get so lucky?
I watched a little Oprah today. She said that if you're breathing without a machine, you can start by being thankful for your breath. I can do so much more than breathe. I can walk and talk and type and hug and eat and laugh and make sarcastic comments about the hospital staff. So please don't feel sorry for me. I'm here surrounded by people I love and getting messages of love from so many dear people near and far. And I had at least 20 things make me smile today. And I'm looking forward to tomorrow. Hope you're doing the same.
Tuesday, January 06, 2009
Finally made it home. Waited for hours upon hours to be taken to have my central line removed (by the way, ouch!). Made it home around six and had 10 minutes at the dinner table with the kids before I collapsed.
Trevor was super cuddly, Juliette was a little under the weather, and Hayden is Mr. Independent. But the dogs? I'm guessing they were exiled from the big bed by Grandma Denise in my absence so they were absolutely overjoyed by my return. I think a few weeks of convalescence will be right up their alley. They've pretty much been rehearsing for this their whole lives.
Never thought I would get so much pleasure from laying my head on my own pillow. It's better than Vicodin. Sweet dreams.
Monday, January 05, 2009
They say that for the tumor to have gotten to the point it did (completely obstructing my colon), it would have been growing there for 10-15 years. It's just hard to think that this cancer has been there since before Sean and I started dating, before I ever carried any of my precious babies. Just lurking, growing. They say the kids need to start having colonoscopies in their mid-20s. Poor things. What a genetic gift, eh?
Today has been a little challenging. They took me off all my IV pain meds at once, trying to prep me for going home tomorrow. I went from total NPO at midnight, to trying to force down food and drink in an effort towards independence. After almost 2 weeks of not eating or drinking, I think it's going to take a little time to regain an appetite. And then there was the reality of the colostomy, which is really more reality than I wanted to deal with on a day with no Toradol or morphine.
But tomorrow's another day, hopefully a day where I can go home and the babies won't be scared of me. I've been sitting in this bed staring at pictures of their sweet faces just wishing I could hold them without all these wires in the way. Tomorrow, whatever else comes, will bring the cuddles I need.
Sunday, January 04, 2009
Despite a 12:30 am dose of Benadryl and a 1:30 am dose of Toradol. I'm not in substantial pain, just itchy, sweaty, and wide awake.
I even had the nurse draw my bloodwork at 1:30 am so she wouldn't have to wake me at 4 am like she usually does. Yet, here I lie, wide awake at 4 am.
I've been overwhelmed by everyone's generosity over the past week. The countless expressions of love and thoughtfulness, small and large, have meant so much to me. I know I couldn't do any of this without the support of my family and so many of you have expanded and redefined what it truly means to be a family. I feel rich in the truest sense to be blessed with so many lovely souls in my life. Thanks for being my backbone when I needed it most.
Saturday, January 03, 2009
She had a pretty rough night last night. The pain in her back was pretty significant and she couldn"t pump those pain killers in fast enough. It seems the hospital has this thing about people OD'ing so they only let you get a dose once every 10 minutes by pushing the button. Of course, that doesn"t mean you can't push the button 10 or 20 times every 10 minutes in the hope of receiving a bonus dose.
And if the pain wasn't bad enough, about 4:30 she began having a lot of difficulty breathing. They began to be concerned that the pneumothorax wasn't improving so they got out the old scalpel and were preparing to cut a hole in her side to stick a tube into her lung to prevent it from collapsing. Well that prospect didn't have much of a calming effect on her breathing. Fortunately before any of that happened they took another x-ray and decided that the pneumothorax was improving and they held off. Come to find out, the whole punctured lung thing was unnecessary since the assistant surgeon said that the second central line near her collar bone was done by the anesthiologist without the surgeon's knowledge and against the surgeons' wishes. Sounded like somebody got a good chewing out.
OK. That's the weeping endureth for a night part. The joy cometh in the morning part started about 8:30 am. About 30 minutes after receiving a shot of Toradol for pain and Benadryl for a rash that she usually seems to get after anesthesia, she suddenly said "I can breathe. It's not so hard anymore.". After about 4 hours of struggling to breathe and worrying about them having to cut you and poke a tube in your lung, that was indeed good news. Next, the surgical team came in again and provided another very positive report. They looked all around while they had her open and said again that the tumor they removed showed no signs of being attached to any other organ. The liver, spleen, ovaries, uterus, and rest of the colon and intestines all looked good. The lymph nodes they took out also looked normal. We still have to wait for the pathology results but it was joyful news after a night of weeping. The doctors seemed cautiously confident and very reassuring and that made us both feel very good.
Other joys since the sun came up include the removal of the NG tube, oxygen mask and catheter, and also that she stood up and walked to the chair in the room. Later on she intends to walk in the hall.
This now concludes my first post done entirely on a Blackberry. (Yes,the Blackberry issue was resolved. I'd rather not say how.). I don't think I'll ever become a Crackberry addict like some people I know who will remain nameless, but it is nice to be able to stay in touch with friends and family and read the many words of encouragement and support. And a belated Happy New Year to all.
Friday, January 02, 2009
They wheeled LM into the OR at 7:42 this morning. The surgeon came to talk to me at 10:00. He said everything went well. He took out ~8-10" of colon. The suspicious looking spots on her liver that showed up during an x-ray a few days ago didn't look suspicious upon examination during surgery so they opted not to biopsy those. He said the liver looked good, the spleen looked good, the rest of the bowels and intestines looked good.
Her colon was swollen and clearly had been obstructed for some time. There was some evidence that her stool had contacted the appendix so to reduce the risk of infection/appendicitis they removed the appendix while they were in the neigborhood. A colostomy was installed and a hernia was repaired.
She'll have an NG tube down her throat for a day. She also has an oxygen mask because apparently they nicked her lung (pnuemothorax) a couple of days ago when they installed the central feeding line near her neck and don't want her lung to collapse. If it doesn't heal by tomorrow they may put a tube in through her side between a couple of ribs.
They will try to get her up and walking tomorrow and may start her on liquids tomorrow or the next day if everything looks ok. They expect her to stay ~5 days in the hospital. Not sure when the pathology results (for colon and lymph nodes) will be received, hopefully by the end of the week. With the holiday yesterday and the weekend coming, they expect a backlog on Monday but the oncologist said he will try to expedite things.
She has been in quite a bit of pain this afternoon and is giving the PCA machine a real workout, clicking the button every couple of minutes to get her morphine fix (although it only works once every 10 minutes). But it seems to be her back more than the stomach area. They have just given her another injection for pain and she is resting better now.
We thank everyone for the prayers, text messages, calls, and flowers. If I wouldn't have somehow screwed up her blackberry, I would have posted this 6 hours ago. I am at home doing this. ABOUT THE FLOWERS, although we do appreciate them and they are lovely, please do not send anymore now, the room we are in is very small and if we get any more they will be sitting on the floor. I hope that doesn't sound ungrateful.
Well, what else can I say. Why did life decide to start happening so fast? Hey, Michele just got here with some food for the kids. I think I'll go steal some before I go back up to the hospital. Thanks again to EVERYONE. I will try to post some more tomorrow. I know we're not out of the woods by any means yet, but I feel a little better today.