Sunday, January 31, 2010

Slow going

I had my hopes up that Mike might be getting home Monday, but of course, something else has come up. Dr. Neel said if he spent Saturday and Sunday out of bed and moving around and eating, he would be ready to go home.

Well, he's getting better on the eating part. But now he has gout in his left knee and he can't move. He's in a lot of pain from it. They are giving him some steroids and pain medication. If it's not better tomorrow, they'll bring in a rheumatologist to see what they can do. They think it's a result of all the fluids and medications he's had over the past two weeks building up around his joints.

But aside from that, he's really doing well. His blood counts are normal, the kidney doctor has stopped coming by because that's all normal now, and they stopped the nutrition in the IV. He's also talking now, which is nice.

As soon as the knee is taken care of and he can get back on his feet, he'll be coming home. It really is always something, isn't it?

Thursday, January 28, 2010

What day is this?

Seriously, I'm losing track. Mike has been in the hospital for 11 days now. It seems like a year. He has reached that stage where he just wants to get the hell out of there. And I can't blame him. Since he's been there, he's not had more than two hours of sleep at a time. Nurses and doctors are constantly in his room, checking his blood pressure, changing IVs, bringing pills or making him try to sit up. He just wants to come home so he can get some rest.

So he is on a feeding tube, which is really just an IV. Nothing down his nose, so that's good. In the meantime, he's slowly starting to eat actual food: yogurt, Jell-O and grapes. I don't even want to think about how much he weighs.

He's also getting some physical therapy to help him regain his strength. They've been doing leg and arm exercises and getting him to walk a little around his room. He's still weak and very tired.

But I'm hoping that we are getting closer to getting him home. I'm going to ask Dr. Neel in the morning what he needs to see happen before Mike can be released. Maybe that will give us something to work with as well as a time frame.

I hope it's soon. I forget what our normal life looks like. I'm missing so much with my daughter. The other night I got home just as it was time for bed, and I wanted to tuck her in and she said "No, mama. Nana tuck me in." When I'm at the hospital with Mike, I'm feeling so guilty about not being with her. And when I'm with her, I'm worrying myself sick about what is going on wih Mike. I'm ready for this to be over.

I'm so grateful that Sue is here now. And I'm grateful for my mom doing my laundry yesterday. And I'm grateful for a good friend bringing us some yummy white bean chicken chili. And I'm grateful for Starbucks for keeping me fueled.

Tuesday, January 26, 2010

Road to recovery?

That's what Dr. Neel said this morning about Mike. Still having a hard time believing it. He's talking a little more and starting to sit up some, but is still very weak.

There has been some talk about bringing in a physical therapist to help Mike start to regain his strength so he can come home. I can't believe he's been there nine days now. It's all starting to blur together.

I took Julia to see him Tuesday evening. He was very happy to see her. And she was very happy to see him.

But the big issue for me right now is Mike's lack of eating. The doctors and nurses told him he needed to drink three Ensures a day and three of these icky-tasting protein shots since he won't eat. This was after the threat last week from the dietician of a feeding tube.

Well, here it is five days later and he's barely drinking two Ensures a day. It is a constant struggle all day long to get him to drink them. He's so mad at me for pushing but I don't care. I don't know what it's like to be as sick as he is, but I do know that he will never get better or regain his strength if he doesn't eat.

I'm beginning to think they should have given him the feeding tube. I'm going to see what Dr. Neel thinks about it. I just want him to come home.

Monday, January 25, 2010

Good numbers

I wanted to do an early post today because I left things last night pretty sour. While Mike still feels like crud and is still weak, his white cell counts are back to normal and some of the other things like the kidneys, etc. are improved as well.

Dr. Neel was very happy this morning. He said the light at the end of tunnel is near. Things should start to pick up.

Although I'm still having a hard time reconciling what the doctor is saying with how Mike looks. I'm a very impatient person.

However, he is reading the newspaper as I type and they want him to try to sit in a chair sometime today. I think I may bring Julia in this afternoon.

Sunday, January 24, 2010

Up and down

It's starting to seem like as soon as I write Mike's making some progress, the next day he's feeling like crap again. And so it is with today. This morning, he was a little more alert and active, reading the newspaper again.

I went home to give my mom a break and see Julia for a bit and when I came back he was again barely speaking or able to move. A nurse described him as "profoundly weak."

I was really hoping today he would start feeling better. His white blood cells are up to 2.9. They were .20 just two days ago. So that is good.

I just want him to feel better. I am nearly losing my mind so I can only imagine how he must be doing. I mean, how long can this go on? I just want our normal little life back.

Saturday, January 23, 2010

Baby steps

Mike is still weak and unable to get out of bed, but I'm seeing small signs of improvement. And the best thing of all -- he got to see Julia today.

First the medical update: There were a ton of doctors in this morning. My sister-in-law Lisa was there so I could spend some time with Julia. Basically, they are monitoring his kidneys and his stomach, where they figure the infection is. They're fighting it off with antibiotics, but say it will ultimately get better when his white cells go up. They're starting to go up now.

One doctor said it was expected that Mike would be feeling like he is. He said once the white cells start to increase slowly, as Mike's are, the body can react by essentially getting worse before it gets better. He will probably feel like this for a few more days, then all of a sudden start to feel better. Again, the whole waiting game thing.

Mike was ordered to drink three Ensure "milkshakes" over the course of the day to get some calories and nutrition in him and to try to start getting his strength up. He didn't want to, but he did it. I wanted to jump for joy every time he finished one.

I had been going back and forth all week on whether to bring Julia to the hospital. She can't possibly understand what is going on and I was worried about her seeing Mike like he is. But yesterday, I really felt like he needed to see her in the flesh to remember why he's got to fight so hard. And the doctor agreed.

It went really well. Julia was not at all phased by the surroundings. She was just happy to see her dada. She wanted to get in bed with him so bad. But we sat her in a chair next to him and she drank her juice while he had an Ensure. She also tried to feed him Goldfish. Mike was beaming when he saw her and he made every effort to talk while she was there.

My mom took her home and I stayed and hung out with Mike. He was awake and alert the whole time while we watched a movie, and he even read the newspaper. This sounds like nothing but it was a big deal to me. He hasn't had the energy or desire to do any reading or watching TV this week.

So I'm really praying this means he's starting to turn the corner.

(Also today, we eagerly awaited text messages from Philip updating us about Kris, who was in labor. FINALLY Baby Felix arrived. 7 pounds 5 ounces, to be exact. He is so stinkin' cute already. We are over the moon.)

Friday, January 22, 2010

It never ends

I left the hospital feeling somewhat positive last night. Mike had been eating and a little more alert. When I got there this morning at 7:45, he was too weak to get out of bed.

The doctor thinks the lack of nutrition is taking its toll. So the goal for the day was supposed to be getting Mike to drink some protein shakes and eat something like applesauce.

But there are a million things going on. They can't figure out what's causing him to have a fever. They think it's an infection and they've been treating with antibiotics. But today they brought in an infectious disease specialist, who ordered some CT scans to see if there's infection growing somewhere it's not supposed to be. And to get a CT scan, he has to drink a ton of this chalky fluid. So much for getting him to eat to help him regain his strength.

His red blood cells are back to normal. The white ones are creeping up. I think they are supposed to be 3.9. His earlier this week were 0.16. Today they are 0.29.

I'm starting to lose track of all that is going on. There's a kidney doctor who sees him, an endocrinologist, a nutritionist, and now this other doctor. I feel so bad for him. He never gets a moment's rest.

The only good thing is that before Dr. Neel left this morning, he told him that while it doesn't seem like it, he will start to feel better.

Thursday, January 21, 2010

More waiting

Mike is still weak today, still struggling to talk, sit up and eat. I asked the doctor WHEN he is going to start feeling better. The answer: It will take some time. They say that because he's been on chemo for a year and a half, it has a cumulative effect and it takes a while to bounce back from something like this.

He did sit up for a bit today and after threat of a feeding tube, he finally drank a protein shake, had some juice and ate applesauce. It's the first he's eaten since Sunday morning. The dietician said he wouldn't get any better if he wasn't getting some nutrition. They're counting his calories tonight to see what he can get in him. I guess if he doesn't meet a certain level, he'll be getting a tube down his nose. I am really really really praying that won't happen. Hopefully they will see he is making some effort.

He also actually watched some TV, sports of course. And I read some of the newspaper to him. I was happy to report to him that Maria Sharapova is out of the Australian Open.

Lisa decided to stay a couple more days and I'm actually going to go into work for a few hours tomorrow, so I don't use up all my sick time this week. If anyone wants to email me, it's

Wednesday, January 20, 2010

Day three

Much of the same for Mike again today. Though there have been some teeny improvements, which we'll gladly take.

He ate a couple of popsicles and drank half a soda. He hasn't had a bite of food since Sunday morning. Also the doctor wanted him to sit up today, so he sat in the chair in his room for about half an hour.

He's still just so tired and so weak. The hardest thing for me is that he's not talking, except for a word here and there. He just doesn't have the strength or energy to make the words. I miss hearing his voice.

The blood tests showed his kidneys were normal, so that is good. But his blood counts are still low. He's having another blood transfusion tonight, and he had an infusion of platelets this afternoon. He gets a shot every day of some drug that is supposed to boost his white blood cells. They just haven't gone up yet. A nurse told me today that often they will stay low and then jump up quickly.

I get the sense that this is really just a waiting game. The doctor and the nurses keep saying his counts will go up and he'll start feeling better. I just want it to happen right now.

Lisa is leaving tomorrow. She has been such a help. She went to the hospital early this morning, so I could spend some time with Julia. I hadn't seen her for days. And my mom has been watching her and helping around the house. My friend Sara is going to watch Julia on Friday so I can go into work for a little while and she made me some lasagna. Sue is coming down next week. I am so grateful to have such a good support system.

I will update everyone tomorrow.

Tuesday, January 19, 2010

More of the same

Today was pretty much a repeat of yesterday. Mike is still weak, not able to talk very much and is sleeping a lot. His white blood cells are still pretty low. They are giving him medication to get it back up. He got a blood transfusion this afternoon and that brought his red cells back up, so we're hoping that will give him some strength back.

I just wish it would happen soon.

He's still running a fever and is receiving antibiotics to help him fight whatever the infection might be.

We're doing a lot of waiting and hoping all the fluids and meds will kick in and he'll start feeling better.

My sister-in-law Lisa is here and my mom has been taking care of Julia. Thank you for all the phone calls and messages. I will try to keep everyone posted on this site.

Please keep praying.

Monday, January 18, 2010

Please pray

Mike is in the hospital. He's been having a lot of side effects from chemo, which culminated in him getting dehydrated and having low blood pressure and low blood counts, in addition to a really bad bloody nose.

This morning, he was so weak, he couldn't walk. We went to the emergency room and they admitted him. They've been giving him fluids and various medications and platelets to get his counts back up. The bleeding finally stopped and he's been resting all day.

Dr. Neel stopped in this afternoon and said he thought Mike should be feeling better in a couple days. Part of the problem is that Mike is so stubborn, he didn't get help earlier in the week and let it go so long. I think he's learned his lesson on that.

But later tonight, Mike developed a fever and the nurses fear he's got an infection, which he won't be able to fight because he has no white blood cells. They're trying to pinpoint what it is, and are giving him antibiotics in the meantime.

Please keep us in your prayers. This is a really scary time.

Friday, January 15, 2010

We're ok

So many of you have sent notes asking how we're doing after this most recent setback. So I thought I would address that. Yes, the news really really really sucks. But we're getting through.

For the first three days or so I think we walked around in a stunned sort of numbness. I couldn't really think about anything else. I was clinging to Mike, not really letting him out of my sight. I sat outside the bathroom while he showered.

It's Mike who's lifting me up. We had this conversation last week:
Me: What are we supposed to do here?

Him: What do you mean?

Me: I mean, are we just supposed to walk around like nothing is wrong?

Him: What do you want to do?

Me: I want to lay in bed and not move.

Him: What good would that do? We have to keep living our lives.

Mike is right. I would say a relative normal has set back in and we're focusing on thinking positive about chemo and keeping up the fight. We have this beautiful girl who needs us and who makes it very hard to be in a bad mood. Mike is still working, covering games in the freezing cold. School started back up this week for me. Julia still demands to be tickled every half hour or so, and one of us will always oblige. We are OK.

It helps that you all are thinking of us too.

Wednesday, January 13, 2010

An update

Just back from Dr. Neel's and an afternoon in the treatment center. Mike's now had two treatments. He'll be off next week, then go back for two more.

Here's some of what the doctor said: It was a little bit shocking to see the progression Mike's cancer had made.
He called it "dramatically worse." There are numerous areas in the liver, with the one spot that was 1 cm now close to 5 cm. Some of the lymph nodes in his chest have grown to the point that if they get much bigger could keep his lungs from fully expanding.

So that really sucks. But there was some hope. For one, he said the liver is a pretty remarkable organ in that the tumors really have to be massive for there to be trouble. And right now, Mike's not having any problem breathing.

I asked this question: Are we at a point where this is life threatening? Dr. Neel said no. Right now, all of Mike's organs are functioning and he's not having any cancer-related symptoms. What the situation is though is a warning and an alert telling us we have to get back on chemo. If growth continues unchecked and can't be brought under control, then it becomes life threatening. And the chemo that Mike's on has a proven track record with him and we just have to be hopeful it works again.

So that's what we're doing. Hoping and praying.

And we're also trying to stay warm. It's been FREEZING -- in Florida. Julia has the right idea -- flannel pajamas, a blanket and a favorite book. (Just had to throw in a picture of her for good measure.)

Tuesday, January 5, 2010

Not good

So, we got Mike's scan results, and well, it's not exactly the way we wish we were starting the new year...

We're going back to chemo tomorrow (Wednesday) because the tumors have grown. In the neck, chest and liver. Mike didn't get specific numbers on the phone with Dr. Neel, but he said the growth was "not subtle." We see Dr. Neel on the 13th and we'll get more specifics.

It seems there's a sense of urgency though, so the plan is to go back on the chemo that he'd been on last year, the one that had worked for him before. He'll do two cycles and then have scans again, which works out to be about mid-February. If it's not working, we'll have to move on to something else. Dr. Greco gave us two options when we visited him in Nashville. We haven't had to use the second one yet, so we do have a backup.

So yeah, it felt like a punch in the stomach yesterday, since we'd had such good news just a month ago. Thus the nature of cancer. A roller coaster. We just started noticing his neck looking a little bigger in the past two weeks. Not sure if the cancer had been growing all the time Mike wasn't on chemo or just came on all of a sudden.

But today, we're trying to be more positive. This chemo has worked before, so why can't it again? Right?

Friday, January 1, 2010