Tuesday, December 23, 2008
Mike's blood cell counts are low because of the chemo and he has to have a transfusion on Christmas Eve. The counts were low last week so they started him on a weekly medication called Procrit, but it takes a while to kick in. The numbers were even lower this week, so the doctor is insisting on a transfusion, which works immediately.
Normally, low red blood cells make you feel weak and tired and short of breath. Mike has been feeling fine. Last week's chemo was pretty uneventful. His numbers this week were 7.8 and apparently normal is 9. A nurse told him a lot of people who have a 7.8 are in a wheelchair. So even though he might feel fine, the nurse said his organs are crying out for the blood.
It sounds like a big deal, but it's really not. It's done at the same place as chemo and is essentially just an IV. Unfortunately it takes four hours.
So on Christmas Eve, I will be at two of my least favorite places: the chemo room and work. Yes, I have to work Christmas Eve night. My heart is aching because I will miss getting my girl dressed in her Christmas jammies and putting cookies out for Santa and tucking her into bed. And I'm missing our friends back home so bad I can't stand it. And don't get me started on all the snow.
I'm feeling a little bah humbug!
But if we can just get through the next couple days, our little family will have Christmas day together and this weekend we are going to Naples to see the Casales. So I'll try to suck it up and be as tough as my husband...
Here's hoping all of you have a fabulous and Merry Christmas and many blessings in the new year!
Wednesday, December 10, 2008
We have noticed a difference. We're trying not to think too much about it or get really excited. The tumor got smaller once earlier this summer. So let's just say we are cautiously optimistic.
But it was really nice to hear something good for a change. I got my Christmas wish -- I can finally take a deep breath.
Sunday, December 7, 2008
So we finally put up the Christmas tree this weekend. Everyone's getting in the spirit -- even Julia who learned her first Christmas carol. If you can get through the minute or so of me begging and pleading in this video, you can hear it.
She's obsessed with the Christmas tree -- not sure how we're going to keep her from yanking the ornaments off or climbing up it or eating the lights. Check out what she did with Ella while we were putting the tree up...
It's kind of hard to feel all Christmasy in Florida. Especially when I've been hearing from friends how cold it is back home and how pretty the snow is. I've seen several facebook updates talking about making chili or curling up by the fireplace. And I've been in such a funk because I miss that so much.
But then we had a day in Florida like Saturday. Mid 70's, clear sky, sunny and perfect. A day for lounging in the hammock.
Sunday, November 30, 2008
Mike's just been really tired and nauseous and not had much of an appetite. This coming week is an off week, so he'll probably start feeling back to normal just in time for a new round. Thus is chemo, I guess.
But we have certainly been counting our blessings this week. We have so much to be thankful for, especially days warm enough to go to the beach:
Monday, November 24, 2008
This is my husband four days after chemotherapy: in a bounce house with his 2-year-old. Seriously. He is so tough and determined not to let this stupid cancer get him down. His strength amazes me. If I were in his shoes, I probably wouldn't get out of bed. In fact, were it not for Julia, I wouldn't get out of bed as it is now.
We go back to chemo tomorrow. Mike's been feeling pretty good the past couple of days, so hopefully he'll be good to go for a big dinner on Thanksgiving.
Back to the bounce house: Julia was invited to my friend's daughter's birthday party at one of those places with all the inflatable stuff for climbing and jumping. It was sooo much fun. Julia had a BLAST. She went non-stop for more than an hour. I, on the other hand, was beat -- because it was mama who had to do all the climbing to get Julia up to the giant slides. Whew. I was sore and barely able to walk the next day. A sad state of affairs, I tell ya.
Friday, November 21, 2008
Thursday, November 20, 2008
Before, it would take a couple of days before he started feeling lousy. We're hoping that won't be the case this time.
Next chemo is Tuesday.
Tuesday, November 18, 2008
So Mike will have chemo tomorrow, one day next week, and then he'll be off for a week. Then the cycle will start over -- one day a week for two weeks, then off the third week -- for two more cycles. Then a CT/PET scan to see if it's working.
Mike's not thrilled to be headed back to the chemo room with its bright yellow walls, chipper nurses and fake leather recliners. But he's ready to be fighting this stupid cancer again. It's been almost two months. The side effects of the new drugs are supposed to be minimal. Mike of course is planning to work tomorrow afternoon when it's over... You know how he is.
So keep your fingers crossed for us.
Oh, and several people told me "oh, that's kind of a bad photo of Julia on the Dance Party entry. Kind of blurry." That's because it's a VIDEO!! That's right, there should be a play button beneath it or you can just click on it and watch her move and groove to the music. So worth your while, if you ask me.
Friday, November 14, 2008
And he's the expert.
So he gave us a new chemo -- one he says the insurance company will/should approve. It's three drugs given in an IV two times over the course of three weeks, for three cycles (that's 9 weeks). Then he wants a CT and a PET scan to see if it's working. If so, we continue. If not, he prescribed a back-up chemo.
He explained to us what needs to happen -- we need to find a chemo that will shrink the tumors and keep taking it until the tumors shrink all they're going to shrink. Then, Mike would have radiation or surgery to remove what is left. So now I can picture it in my head and I will be willing it to happen with all my might.
So, we feel like our trip was productive. We liked this guy. He played it straight with us -- you need to have your affairs in order because you never know what will happen. This cancer is very serious. But he also gave us hope -- you have to keep fighting, you have to try everything. And he's seen people get well. He also said if we're at a crossroads again, he will be glad to consult with Mike's doctor. He seems to have a lot of tricks up his sleeve.
So here's to hoping the third time is a charm.
Friday, November 7, 2008
A typical Friday night at the Cherry house...
Julia is over her initial disdain for Halloween and looooves to wear her ballerina costume now. She also loves to dance in front of the window where she can see her reflection.
And yes, that's Rick James she's groovin' to because, well, that's just how we roll...
Who do you think she gets her moves from?
Thursday, November 6, 2008
So we're leaving Wednesday night and coming back Thursday night. The best thing is that we won't have to be away from Julia for too long. The drive is about 11 hours. Now, if anyone has any drugs to help me get through the flights... send them my way.
Now that the election is over (although don't tell Julia that, she keeps saying "Yaaay, John MaCain!" That's how she says it -- John Ma-Cain and Barack Obamba. She can also identify them on TV. How smart is that? She's TWO.) we're trying to get everything in order for our trip. We want to make sure the doctor there has all of Mike's records, every test, every CT scan, every lab report. We want to make sure he has all the information since it's unlikely we'll be seeing him again. We're hoping he can take a look and come up with something. Anything.
P.S. Sarah Cannon is Minnie Pearl! She battled breast cancer in the 80s and went on to become an advocate for cancer research. The center uses her trademark hat as their symbol.
Monday, November 3, 2008
We were told it could take months so we are happy that we could get in so quickly. It's Thursday, Nov. 13. The short time frame means plane tickets are way out of our price range so we're driving up Wednesday and back Friday. We're still scrambling on the details. I think my mom is going to take off work and stay here with Julia, though it kills us to be away from her.
We're just happy to see someone who specializes in this cancer. Dr. Neel is a general oncologist, and even when we went to Moffitt, while the doctor had experience with carcinoma of unknown primary, his specialty was lung cancer.
Still no word on the drug front. I'm guessing our appointment in Tennessee will come before any news so maybe it will be moot.
Friday, October 31, 2008
Thursday, October 30, 2008
Did I mention that the infusion and the oral medication cost $24,000 for a month's worth of treatment? Sure, we've got that laying around.
We were going to just outright buy the pills ourselves, but Mike's doctor says they really need to work in conjunction with the infusion chemo. And no way can we pay for that at $11,000 a pop.
But we're not giving up. I will not let this go and I have become shameless in my pursuit. I sent a sappy, begging, pleading letter to a VP in our company, who oversees employee benefits. I did everything but send her pictures of my child. She actually wrote back and said she would look into it. The HR person at our paper is now involved too. She says the prescription service rejected the medication because they can't find any link between these drugs and Mike's cancer. So we're trying to get Mike's doctor to send us his research and hopefully re-submit the claim. I also called our insurance company -- different from the prescription service -- and they have a process where claims for rejected medication can be submitted to them. So that is under way as well.
So we've got some balls in the air. And we're waiting to hear from the doctor's office in Tennessee to see when we can get an appointment.
It's been really frustrating, but through the insanity, we've been reminded what good friends we have and that we aren't in this alone. We appreciate all your offers and tips and phone calls and everyone working all their contacts to see if they can get something to shake out. We had to turn down one friend's offer to sell his dog's kidney... but we're truly grateful for everything.
Monday, October 27, 2008
I can't really say I'm surprised. They took no time in ruling either (we found out Thursday but I didn't want to ruin Julia's birthday post with ugly news) which makes me wonder if it was even really re-evaluated.
I could go on and on about how furious I am and how I feel like if we worked for a different company Mike might get a fighting chance, and how helpless and angry I feel, but I'm sure you can imagine.
So the doctor's office is now making a request to the drugmaker itself. No clue on how long this might take. It's now been a month since Mike has had any chemo...
We are also considering just outright purchasing the drug. Two cycles would cost $2,000 but we sort of feel like we need to take every shot we've got. Mike would get a CT scan after the two cycles and if it's not working, at least we would know. And if it is, perhaps we could make a new request for coverage. We're just trying to weigh all the options.
The wheels also are in motion for us to see a specialist in carcinoma of unknown primary. His name is Dr. Anthony Greco and he is at the Sarah Cannon Cancer Center in Nashville. He is THE top doctor for this kind of cancer. When Mike was first diagnosed, I read every possible thing I could on this disease, and Dr. Greco's name kept popping up over and over again. He's done numerous studies and has had a lot of success and breakthroughs. Then, the doctor we saw at the Moffitt Cancer Center recommended him and when I read his bio and saw that he went to college and med school at WVU, my heart skipped a little beat. Maybe it's a sign. Who knows.
Anyway, he will see Mike but we have to have our doctor here make the arrangements. It could be months before we get it, but we're excited to get things going.
Thursday, October 23, 2008
We almost had to cancel the party though. Julia was running a pretty high fever Saturday. Motrin brought it down and it wasn't too bad Sunday, so we went ahead with the festivities. It came back Monday morning, so we went to the doctor. Little did we know, we would end up there three days in a row.
Turns out a fever with no other symptoms is cause for alarm in little ones, but the doctors couldn't figure it out. They tested for strep, took blood to see if it was an infection, but nothing. They told us to give it another day and come back if it hadn't gone down. Back we went on Tuesday. They decided to give us an antibiotic to see if that would do the trick.
The next day, the fever was gone but the poor girl was covered in a rash. They wanted to see her yet again. I swear, she'll never get in the car with me again. She was not happy, to say the least. Anyway, it turns out she has roseola, a common childhood virus, a fever for a few days followed by a rash. She's covered in pink polka dots, but she'll be fine.
I swear, nothing is ever simple around here, is it?
Monday, October 20, 2008
We've been stuck in a maze of red tape the past several days. Try to see if you can make any sense of it:
First, we were told we couldn't get the prescription filled at Walgreen's, we had to go through the prescription service our company uses. They said they needed a "prior authorization" from the doctor. Sounds simple, right? Wrong. Doctor's office said they sent it. Prescription place said they didn't. So it went back and forth like that for a few days. Finally it gets in the right hands. Then we learn a "nurse" needed to review it. At 6:15 p.m. on Friday, I get a phone call that it's been denied. The lady said the insurance company rejected it, that they would talk to the doctor's office Monday morning to see what to do next.
Great news to get at 6:15 on a Friday, when we are powerless to do anything...
So I call the insurance company this morning to find out why this is happening. They have no clue what I'm talking about, they don't have anything to do with prescription medication, they say.
Back to the prescription service. A guy there tells me they've already sent paperwork for an appeal to the doctor, they're just waiting for a response. He tells me it could take 30 days. He tells me the info was sent to someone named Kit. There is no Kit at the doctor's office. He tells me there is. He tells me it was our employer that denied the request...
We call the doctor's office. They have no clue Mike hadn't been able to get the meds and know nothing about an appeal. They confirm there is no Kit.
Back to the prescription service. I finally get someone who puts me on hold while they call Dr. Neel's nurse. The proper paperwork is finally sent. Neel's nurse called me back later to tell me an emergency appeal was filed, basically the doctor saying this drug is a medical necessity. It will take 72 hours for a decision.
I realize this is long and rambly and makes no sense but that's what's been going on. I truly can't believe this is happening. It is beyond my comprehension that someone at an insurance company or our employer or the prescription service (I still really don't know who made the decision) can decide they know better than Mike's doctor what to do. And if we are going through this madness to get a prescription filled, I'm sure it will be a blast trying to get approval for the $11,000 chemo.
Oh, and through all this, we had Julia's Elmo party. It was quite fun and a good distraction. She was showered with so many gifts! Oh my goodness. I will post pictures of our festivities soon.
Thursday, October 16, 2008
I cannot believe my baby is two. It literally feels like just yesterday she was so tiny that holding her made me nervous because I thought I might break her. Now she's this giggly little girl who sings Twinkle Twinkle Little Star and loves to dance and jump and make messes and curl up on the couch for a story. How did this happen?
I'm still in amazement every day. I creep into her room at night and just watch her sleep (and make sure she's breathing, yes, I still do that) and my heart just explodes. I pinch myself because I can't believe she's mine. Despite everything that's going on around us right now, Mike and I feel blessed beyond measure.
Just wanted to share some pictures of Julia from the past year.
Tuesday, October 14, 2008
But Dr. Neel wants to try two new things. One is a chemo drug that is taken as a pill. It's used for head and neck cancers. The other is a new infusion chemo that is primarily used for breast cancer but is having success with other cancers. The reason Dr. Neel likes it so much is that it tends to be successful in cancers that have been resistant to traditional chemo. Sounds like what we need at this point.
But of course, nothing is ever simple with this stuff. The fancy new chemo costs $11,000 a dose. The doctor's office is working with our insurance company and the pharmaceutical company to see if they can get it approved. We may know something by the end of the week. He would probably start early next month.
In the meantime, he's supposed to be doing one cycle (two weeks on, one week off) of the pill chemo but we're having trouble getting the prescription filled. Turns out a one-week supply costs $500. We're trying to work with the mail-order pharmacy that our insurance uses. It will cost less that way, but he's supposed to start it tomorrow, and that doesn't seem likely now.
We were in good spirits with all of this until we started running into the insurance nonsense...
We were happy to hear that there was something new to try. My prayers this week were for hope. No matter what the scan showed, I just wanted to leave the doctor's office with some hope. And I feel like we got that. Dr. Neel told us that the cancer is not life-threatening at this point. But it's clearly growing and we need to find something to stop it.
Monday, October 13, 2008
We've been busy at work, taking care of this cutie:
baking these yummy pumpkin spice cookies with cinnamon icing:
reading this book a dozen times a day:
and assembling this for Julia's birthday:
And here's a little something from cancer world that really strikes me as odd. Cancer seems to have run amok in our newsroom. (and I just mean the newsroom of about 50 or so people, not advertising, classified, anywhere else in the building..)
Aside from Mike there are three other people who have recently been diagnosed. A few months before Mike, a co-worker was diagnosed with lymphoma. She essentially retired right after and I'm not sure of her prognosis. A month or so after Mike, another co-worker was diagnosed with lymphoma. We just found out last week that she is now cancer-free, so thank God for that. But also last week, we learned that a former co-worker, who spent about 20 years at the paper, has cancer.
I've heard from one person that it was lymphoma and from another it's leukemia. Either way, they're both classified as blood cancers, and Mike's initial diagnosis was also lymphoma.
It's probably coincidence, but it makes me shake my head. I mean, I've always felt that everytime I walked into that building, it was sucking out my soul, but now I have to wonder if it's also making us sick.
So I'm hoping I'll have good news to post tomorrow. I think we're a little more prepared this time than last. Last time, it never occured to me that the cancer could have actually gotten worse. This time, I think we're ready to hear whatever and know that if it's not something in our favor, we'll just move onto option 3.
Sunday, October 5, 2008
Friday, October 3, 2008
Wednesday, September 24, 2008
Another odd thing happened to us in cancer world since my last post. When Mike woke up Saturday morning, his face was swollen and he had a little trouble talking. One side of his face was drooping. The power of three Cherry women in the house convinced (or bullied, however you would like to interpret..) Mike to call the doctor who told him to take some steroids for a few days. I think in the back of our minds we were all thinking stroke since that's a risk that comes with the chemo drugs... Turns out, that night Mike had somehow managed to fall asleep with both of his hands pressed against the tumor in his neck. Apparently, he caused some trauma to his facial nerve, we learned today. His speech is fine now and the swelling has gone down, but his sweet smile is a little crooked. It will get better, but in the meantime, I'll have to stop being so funny.
I got my jury duty postponed until January so I could go with Mike today. Once I tell them I have a full-time job, a toddler and a husband with cancer, surely they'll dismiss me. Especially since I'm a journalist of sorts. If that doesn't work I'll tell them I'm in favor of the death penalty even for minor traffic infractions.
I'm not trying to get out of doing my civic duty -- in fact, anyone who knows me, knows I would love nothing more than to be on a high-profile case so I could be interviewed by Nancy Grace once the trial was over. But right now, I'm a little overwhelmed.
Monday, September 22, 2008
It was a Cherry fest (or as Lisa calls it -- a Lens Crafters ad) at our house this weekend. We had Sue, Lisa, Frank, Nick and Mad.
Anyway, we had a great time eating, drinking, laughing, drinking and hanging by the pool. I finally remembered the last time we were all together -- Mike's 50th birthday cruise back in 2006. Julia was just a blob on a sonogram then...
Thursday, September 18, 2008
It's good that we're not having to make trips to the infusion center every week, that Mike's not feeling run down all the time and that as soon as he starts to feel better, it starts all over again. It's good that his hair has even started to grow back.
Things have become very normal at our house.
But last night, I had a mini meltdown because it just struck me -- my God, Mike has cancer.
It's not like we've forgotten, but the downside of having treatment every three weeks is that it almost seems like nothing is wrong or it almost feels like we're not fighting. Mike said he wishes he were seeing the doctor every single week. It would be good to hear how things are going. Are we making progress? Are any of the tumors shrinking?
It's just the nature of this chemo, that we just have to wait. His next appointment with the doctor and his next chemo are Sept. 24. Guess where I'll be? JURY DUTY! Can you believe that?
Anyway, we've got a fun weekend coming up to help distract us from all this. Both of the Cherry sisters will be here, as well as Uncle Frank, Nick and Madison. We haven't all been together since...well since I don't know when. Yikes. This will be the first time Aunt "Soup" will be in the same room with both her nieces and her nephew. We really do need to move closer.
Thursday, September 11, 2008
I remember how it was one of those perfect almost-fall days. It was just as clear and crisp in Charleston, W.Va. as it was in New York that morning.
I remember being on deadline (afternoon newspaper...) and Stadelman walking out of his office to tell us a small plane had crashed into one of the towers and we needed to hang on to page 1 because we'd probably need to make some changes. I wish I could remember what was really slated for the front that day.
I remember my friend Steven was supposed to fly that very day to wine country for a vacation with his wife.
I remember, before we really knew what had happened, joking that we would probably be sent out to the tall buildings in town asking if they were planning to evacuate. We were all about localizing national stories. Sure enough, by day's end, I know at least Laidley Tower had closed, maybe others.
I remember I was supposed to go South Charleston High to interview people about a proposal to change the school start time. I was on the phone with prinicpal Bill Walton to cancel right at the time the plane hit the Pentagon. I told him what happened and he said "Holy shit" and hung up the phone.
I remember our publisher coming into the newsroom and working on the city desk. I don't know how many editions we published that day. I remember one reporter selling copies out on the street.
I remember going to Mulligan's at the end of the day to have some drinks because none of us in the newsroom knew what else to do and we just needed to unwind and try to grasp what had happened. I remember my friend Brad saying he was glad Al Gore wasn't president...
I remember being really proud of the paper we put out that day.
Sunday, September 7, 2008
The chemo finally caught up with Mike on Friday. He wasn't sick, just an extreme fatigue. He decided not to cover a football game so he could rest, but in typical Mike fashion, he went back into the office late that night to help the staff edit and proofread...
So we're just taking it easy this weekend. I'm thinking an activity like furniture shopping wouldn't be too exerting. I'm on a mission to get rid of my college love seat! I'll let you know how that goes.
Thursday, September 4, 2008
Friday, August 29, 2008
The side effects of both are minimal -- nothing compared the previous chemo. Mike's holding out hope his hair will grow back! One drug comes with a rare but serious risk of stroke. It happens in about one percent of patients. So I guess we're proceeding with some caution. Mike is ready to get rolling. It' s been nice not to have chemo for a month but feels better when he's actually doing something to fight this stupid thing. Please keep your fingers crossed and your prayers coming that this will be the one that does the trick.
P.S. Savannah was fun but I missed Julia so bad I couldn't stand it! I just love that little ball of curls and giggles too much to be away from her so long. But it was nice being with Mike in a city that we love so much. We're still pretty cute, I think...