Seizures

When we returned to see Mike yesterday afternoon, he was non-responsive again. The only time he was really moving any body parts was when he was having seizures, and he was having a good many of them. The doctors put him on Versed (ver-sed) last night to control the seizures and it appears to be helping thus far. The drawback to the Versed is that it’s a sedative, so he’ll sleep and we won’t know if he can do anything or not. He needs to go 24 hours with no seizures before they take him off of the medication. After that we will find out if he can respond to commands. I don’t know what the options will be if the Versed doesn’t control his seizures or if he’s still non-responsive after being off it.

On another note, I do want to say how absolutely wonderful the doctors (and entire staff) are here. It is a dramatic difference from what we experienced in Columbia. We paged the doctor yesterday to see what time he thought he would be by in the afternoon because we had to leave to change hotels, and he asked what time would be good for me. How nice is that? Even the doctor we saw on Monday when we went in for the clinical visit has been by every day to check on us and Mike, and she’s not even considered to be his main doctor at this point. While it would have been nice to get up here last week so that we would probably not be in this predicament, we are extremely blessed that Mike was scheduled to be at Duke when all of this happened. I firmly believe he has the best care available in the country here.

One other thing…I seem to be getting a more regular cell phone signal now, so if you leave me a message, I should be able to get back in touch with you.

A Good Sign

Your prayers are working! Mike had been completely unresponsive, but he is now moving his feet on command. He had not moved his legs at all since Monday night until just a short while ago. We’re a LONG way from getting where we need to be (he’s still not moving his arms), but this is a fantastic start. Please keep praying.

More Waiting

Things are still not looking good. Last night we became a little hopeful after talking with the neuro-oncologist. She said Mike’s rapid decline may have been caused by a seizure, and it would take a while for him to recover from that. He was able to squeeze my finger, move his thumb a little, and move his tongue around as if the tubes were bothering him. He had not done any of that earlier in the day. Unfortunately, this morning he is non-responsive again. The doctor wants to try to give it another 24 hours and see if there is any improvement.

Wait and See

Things are not going well. Mike is doing worse in intensive care today than he was last night when he was admitted. The doctors are a little perplexed as to what caused his rapid decline yesterday. Usually, there would be some sign of seizure, bleeding, etc. but none of that was present. (Typical of Mike not to follow the textbook, eh?) He has a breathing tube hooked up to him, as has been the case since he was admitted to ICU. He hasn’t stopped breathing, but his breathing was a bit shallow and the tumor’s location is in the part of the brain that tells the body to breathe; they were afraid that the tumor would cut off that signal and he would stop breathing altogether. He has an EEG to monitor seizures, but none have been recorded.

The next 24 hours are critical. The doctors have said the tumor is absolutely NOT operable, so that option is out. They are giving Mike tremendously high doses of steroids as well as other agents to treat anything that may possibly have caused his decline. The doctors are going to reassess him in the morning. If he is not responsive, we’ll have to sit down with the doctors to see if there are any other possible options.

Please keep praying…I’m certain that is what made my three hours of sleep last night feel like eight, and it’s the only thing that can help Mike now.

Pray for a Miracle

Mike has taken a turn for the worse. He is in ICU here at Duke, so we will be here the rest of the week. They did a MRI on him, and the tumor now measures 5.5 centimeters by 5.5 centimeters. (When they first found it at the beginning of the month it was 4.5 x 4.7.) I don't know what our options are right now...the only option may end up being surgery which is EXTREMELY risky because the tumor is located in the center of his brain and has spread to the right and left sides.

I know several of you have left messages on my voicemail, but I haven't been able to get a solid signal up here, so I haven't been able to listen to them.

Brief Duke Update

Mike is not doing well; his brain started swelling again today. The doctors here at Duke tried increasing his steroids, but he threw up everything. As I write this, we are sitting in the emergency room so that he can get hooked up to an I.V. and receive his steroids that way. We need him to be coherent tomorrow because he has to be able to knowingly sign consent to participate in the clinical trial. It has more promising results than traditional treatment. As soon as I have the time I will write more details about today's events and what is involved with the clinical trial, but I at least wanted everyone to know what is going on at this point.

Competence in Columbia

I have a renewed faith in the world of adult medicine here in town after meeting with the oncologists today. Mike and I met with a radiation oncologist and a medical oncologist, and both were top notch. The radiation oncologist actually went over Mike’s MRI with us (a novel idea) and showed us the visual images from it. It was rather amazing to see just how big the tumor is in proportion to Mike’s brain. The medical oncologist told us based on Mike’s age and where his tumor is located, there is typically only one method of treatment for it, and that is a combination of chemotherapy and radiation. The chemotherapy is actually just a pill, so Mike would take that orally (I don’t remember the name of it, but I know it starts with the letter t) and do the radiation along with it for a prescribed number of weeks. At the end of that, they would do another MRI to see if the tumor had decreased in size. The only other option is to participate in a clinical trial. They aren’t authorized to do clinical trials here, but Duke is. He strongly encouraged us to participate in one of those if one is available. Basically, with the typical treatment, only about 20% of people are three to four years beyond their initial diagnosis. That obviously means 80% of people don’t have long-term success, so participating in a clinical trial could be more beneficial. The medical oncologist also said based on the size and location of the tumor, it does not look operable. The tumor is somewhat buried in the brain; it’s not like it’s sitting on the top edge and could just be scraped off.

I talked with Duke today, and we will be going up there on Monday. We have an appointment Monday afternoon and another Tuesday morning. We should be able to leave around noon after the Tuesday appointment. Here’s what is supposed to happen during these appointments…

Day One:
Complete a history and physical
Review pathology and most recent MRI
Answer any questions we have
Order any updated labs and/or an MRI (they may take place later that day)
Determine a plan of care

Day Two:
Meet with a social worker
Meet with a nurse educator to learn about the treatment and Duke’s team approach to care

Still at Home

I know a lot of you check the blog regularly, so I didn’t want you to think anything drastic has happened and I just didn’t post anything. We arrived home Friday afternoon around 4:00. Mike took a three hour nap in his own comfy bed then we went out for a Japanese dinner (a couple of steps up from hospital food). We let the girls stay at my parents’ Friday night, and I went to pick them up Saturday afternoon. We didn’t do anything too eventful over the long weekend—Mike finally got the hair cut he’d been fussin’ about getting the last couple of weeks, we ordered a pizza Saturday night, and went to his aunt’s house Sunday for his cousin’s 40th birthday. We wanted to go to church Sunday morning, but Ava had a nasty, nasty cough and runny nose, so I didn’t think the other parents would appreciate her presence too much. I surely wouldn’t be too happy if someone else brought their sickly child to contaminate my children!

We’re both planning on going to work tomorrow to have some normalcy in our lives. Mike isn’t allowed to drive yet, so I’ll have to take him to Northeast before I head over to Airport. He’s definitely a heck of a lot better than he was last week at this time, but he’s not 100% back to his regular self. As one of the physician’s assistants put it to us, think of Mike as being on a spectrum. Before this tumor came about, he was all the way to the left of the spectrum. When he was admitted to the hospital, he was all the way to the right of the spectrum. Now he’s in the middle of the spectrum. Hopefully, with all of your prayers and some help from the doctors at Duke, he’ll keep inching back towards the left. (This is all, of course, metaphorically speaking…don’t go reading anything political into his place on the spectrum!)

On Wednesday we have appointments with a medical oncologist and a radiation oncologist here in town. Once we’re seen by Duke, the oncologists here will work in conjunction with them to give Mike the treatment Duke prescribes. We haven’t heard from Duke yet as to when we’ll be going up there, but they are closed today, so I wasn’t expecting to hear from them before tomorrow at the earliest. If anything eventful happens with the oncologists or if Duke calls, I'll post it on the blog, so everyone will know.

Good News and Bad News

The good news is that Mike is going home! Seeing as how Mike isn’t hooked up to anything and takes his medication orally now, we can do that at home. I know he’s excited to get out of here. The doctor is working on writing prescriptions and orders for Mike to be discharged. I’m not sure exactly what time we’ll be leaving, but I suspect it will be within the next couple of hours.

We got the final pathology report from Duke. Mike’s tumor is a glioblastoma, grade IV. In layman’s terms: it’s really bad. It’s basically the most aggressive tumor out there. I talked with Duke today, and they’re actually booked for the next two weeks with consults, but they are going to work Mike in in the next week and a half. Depending on what they think once we get up there, they may start with chemotherapy then go to radiation, or they may just start with radiation. Once we have a definite date on when we’re going up there, I’ll let you know.

The Squeaky Wheel Gets the Oil

The pre-biopsy, post-brain swelling Mike is back!!! All delusions and hallucinations seem to be gone (either that or he’s doing a really good job of fooling me). Mike is now able to walk around without falling all over the place, and he was able to take a real shower today. (He wasn’t so big on the bed baths and the no rinse shampoo…although I’m lovin’ that shampoo and will have to take the bottle home for days I don’t feel like washing my hair.) Mike no longer has the I.V. hooked up to his arm, and he just had the staples removed from his head. I tried to talk him in to saving the staples, but he wasn’t so interested in that. I think they would have been great for "show and tell."

The neurosurgeon team is now on board with trying to get everything coordinated with Duke and helping out with that in any way they can. We’ve asked that the neurosurgeon here call Duke to talk with their neurosurgeon, so that they’re hearing from someone else other than just me. I think as soon as we have an appointment scheduled with Duke, Mike will be released from the hospital. They just don’t want to release him without knowing what our next move will be, and I can understand that. I was hoping to hear something in regards to all of that this afternoon, but no such luck. Hopefully, we’ll get a clearer picture on where we’re headed and when tomorrow.

Closer to Normal

Mike is getting much better, though he’s still not completely back to his normal self. He’s getting mad at me for him being here, so that’s a good sign. If you want to swing by the hospital to see him, that’ll be fine. He’s still confused on some things, so you can’t believe everything he says, but he’s becoming more reasonable. Just keep that in mind if you happen to stop by to visit…if you want any facts of what’s been happening, Mike isn’t the one to ask right now!

Back at the Marriott

We’ve moved back to the North Tower at the hospital, so we have a lot more room to stretch now. Still the same towels, though. You would think as much as this place costs a night, they could provide some higher quality towels. I was lucky last night that Phillip insisted I go home around midnight so I could get some sleep. Otherwise, I would have been as tired as he was today. As expected, Mike was confused about where he was and kept trying to get up and leave last night. It was more of the same throughout the day today. He’s quite delusional and is hallucinating a bit. It can be a little entertaining at times, but it’s quite taxing at night when you’re tired and trying to get some rest. I FINALLY talked with a doctor about 5:00 today (that’s another story in its entirety), and he’s going to try lowering the steroids to see if that helps with the hallucinating. Mike’s sodium level is back to normal now. Hopefully, the combination of the lower dose of steroids and the normal level of sodium will get all of Mike’s faculties back in order.

I got in with an oncologist today. As seems to be the case with a lot of things around here, I had to take care of this myself. Yesterday I gave the physician’s assistant the name and number of the oncologist I wanted because Mike has to be referred to them by a doctor, but the P.A. didn’t bother to call. He seems to think that since I am planning on going to Duke that I don’t need to have an oncologist here. Luckily, God places the right people in our lives. It ends up that Ava’s speech therapist’s husband works for the oncologist we wanted, so a few phones were made, and, poof, we have an appointment with the oncologist we were wanting.

I talked with Duke today. They said they had not received the tissue samples, so that was another battle I had to fight. It ends up that this hospital sent the sample to the pathology department at Duke and not to the brain tumor center like they were supposed to. Had I not made any calls, the brain tumor center would have never known the tissue samples were there. Anyway, they’ll take between three and five business days to determine their official diagnosis. If Mike gets back to his normal self, we should be able to go up there next week to have them look at him. He has to be able to knowingly sign all sorts of paperwork in order for us to do that. I’m supposed to call them when he is able to function more normally.

Since I’m having to be the pro-active one and take care of so many things myself that I shouldn’t have to be doing, I’ve decided to take full advantage of the sitter they have available here at the hospital. Basically, someone will come in tonight to sit with Mike and make sure he doesn’t make any escapes. I’m going to go home and rest in my own bed, so I’ll be ready to fight any more battles I have to tomorrow.

Again, we can’t thank all of you enough for all of your thoughts and prayers. I know that is the only thing that has kept me from completely going over the edge! (Although I realize some of you may think I went over the edge years ago!)

Doing Better, but Still Some Concern

My apologies for the delay in the update on the blog. I was waiting for the doctor to come by before updating, but the neurosurgeons around here don’t give a time frame of when they’ll be by, and the doctor today didn’t come by until almost 5:00. (It would have been nice to have known that they were going to be that late then I could have gone to my mother’s to spend some time with my girls.) I went home right after that to shower, and had to deal with a few things when I returned to the hospital.

The good news is that Mike was coherent today. Honestly, yesterday he looked like he was waiting on death’s doorstep. Thank you for all of your prayers. I’m guessing his lucidity is what resulted in him NOT having a CT scan this morning, but as seems to be norm around here, I’m not told a whole lot, so that’s just a hunch. When I came back up to the hospital Sunday night after running home, Mike wanted some of my Rush’s french fries. He was chowing them down, so my sister went back to Rush’s to get him some chicken. He ate almost all of that as well. Who knew that Rush’s had such healing power?!? Mike kept all of the food down and woke up at his normal 5:30am this morning; he was able to talk with what seemed normalcy though he had a little confusion about some things, such as where he was. Throughout the day Mike was confused about where he was, but he was able to answer most other general questions and hold conversations very well. As the evening has worn on, Mike has become a little more delusional about where he is and his surroundings. This is causing some problems in keeping him contained in his bed. He’s hooked up to quite a few things, so just hopping out of bed isn’t such a hot idea. I don’t think I’ll be getting much sleep this evening. Thank goodness Mike’s friend Phillip (who has driven here all the way from San Antonio) is staying the night at the hospital with me. He’s definitely been a tremendous help in talking with Mike tonight, but I'm afraid he'll be suffering from sleep deprivation along with me. Hopefully, Mike will continue to get better and we won’t have to deal with these delusions tomorrow.

No word from Duke today. My guess is that they’re doing their own pathology report on the tissue sample sent to them on Friday before calling to set up anything.

The Latest

The neurosurgeon on call this weekend thinks Mike’s brain may be swelling again which is causing the delay in his recovery. He has increased the dose of steroids. They ran some blood tests and found that his sodium is low, so they are giving him some of that as well. The plan right now is to see how those two things help then they will probably run a CT scan on him in the morning. If Mike continues to not recover well, they may go ahead and do another surgery to debulk the tumor as much as possible. There are risks involved in this because the tumor has spread to both parts of his brain.

I finally got a written preliminary report. (The info I wrote about earlier just came from the doctor right after surgery.) They won’t call it a final report because they have sent tissue samples to Johns Hopkins for a more detailed reading. This is in addition to the sample they have sent to Duke. The preliminary diagnosis reads, “High grade malignant neoplasm, pending expert consultation.” The report does state that the tumor appears to be a glioblastoma.

Still Recovering from the Biopsy

It’s pretty much more of the same as far as Mike’s recovery from the biopsy goes. He’s able to do the motor skills when prompted, but he hasn’t been very verbal at all. Sometimes he’ll know who I am and sometimes he won’t. He pretty much slept all day yesterday and slept through the night last night. (Friday night he was restless and didn’t sleep as well—he did a lot of tossing and turning, tried to get out of bed, and was really hot.) The doctor who did rounds yesterday—he didn’t do the biopsy, but he is in the same practice—said that it could take seven to ten days to recover from the bleeding in the biopsy area. So, once again, please hold off on visits at this time because Mike won’t be able to hold a conversation with you even if he happens to be awake. Good thing that faculty at RNE is so wonderful and taking care of the Chick-fil-A’s and ice cold waters at lunch, so Mike won’t be worried about that when he’s more back to his normal self. When he comes to, I think I may just tell him they’re selling faster than ever.

On Friday I requested venodynes for Mike’s legs to help his circulation since he hasn’t been able to get out of bed, and after checking with the doctor, the nurse brought them in. These simulate movement on his legs and help prevent blood clots. Before you go thinking I’m that smart, I didn’t think of getting these on my own. Mike’s cousin, who is a nurse anesthetist, told me I should ask for them. It’s pretty nice to have someone like her who knows what sort of things can or should be done at a hospital.

I got confirmation yesterday that the hospital did send all of Mike’s paperwork and tissue samples to Duke. We’re still waiting on the official pathology report from this hospital.

On a positive note, I’m now only four pounds away form my pre-pregnancy weight. If things keep up like they are now, I may end up at the dream weight I’ve had for ten years now.

Thank you again for all of your comments to the blog, phone messages, e-mails, cards, and especially prayers. I haven’t been able to respond to all of your messages, but I have received them and they are greatly appreciated. Mike and I are so blessed to have such loving and caring friends and family. Keep the prayers going…we know God is the only physician who can heal Mike.

Friday Update

Mike is still resting a lot and not very verbal; he still has some difficulty answering basic questions. The doctor came by this morning and said that the CT scan Mike had done Wednesday night showed a little bit of bleeding in the biopsy area, so that is what is causing the recovery to take a little longer. He said it will probably be early next week before he is released from the hospital.

I gave the doctor a copy of the letter Duke e-mailed me and told him all of that stuff needed to be sent today. He acted at first as if they would wait until the pathology report came back, but I told him to go ahead and FedEx a tissue sample today because they were going to do their own report on it anyway. My pushiness must be working…the nurse just came in for me to sign a release for them to fax all of the written records thus far to Duke.

Duke called me this morning. The physician’s assistant I talked with said he would call me on Monday and we would probably schedule a tentative date for us to come up there then. He said we can’t begin any treatment until two weeks after the biopsy, so I’m not sure when we’ll be heading up that way.

Because Mike needs his rest and isn’t able to talk a whole lot, it’s still a good idea to not visit him at this point. I’ll let you all know as soon as I think he can handle visitors.

Duke

JSYK (that's "just so you know" for all of you non-texters--not that I know much about texting myself), I talked with Duke today. I am in the process of getting in touch with the neurosurgeon here to FedEx copies of Mike's MRI's and a sample tissue from the biopsy to them. Duke wants to do a reading of the tissue themselves. The doctor here has known since yesterday that we're looking at going to Duke, but they seem to lollygag a bit around here, so I'm trying to go ahead and get that ball rolling.

New Room and Preliminary Info

Well, we’ve moved from the Marriot to the Motel 6, but we still have the same quality of towels. We’ve changed rooms and are now in the old part of the hospital. Last night and this morning Mike did fine with his motor skills when prompted (squeezing fingers, pushing toes, holding up fingers, sticking out his tongue) but has had more difficulty with the verbal end of things. He has been sleeping a lot since yesterday’s surgery and has been having a difficult time answering some basic questions, so we’ve moved to what’s called “step down.” It’s a step down from ICU but a step up from where he was. They will monitor him a little more closely here.

Preliminary Report. The doctor can’t say with 100% certainty until we get the pathology report back from the biopsy, but it looks like Mike’s tumor is cancerous and what is known as glioblastoma. For those of you who knew Eric Schell, this is what he had. We really can’t make any decisions about what to do until we get that official report back, but I suspect we’ll end up at Duke if the doctor’s suspicions are correct. For those of you who don’t know, Eric was my boss before he passed away, and I remember from our conversations that he said Duke and some place in Texas were the most progressive in dealing with this particular type of tumor.

Mike is resting a lot and is still not able to verbalize well at this point, so I think it’s best to hold off on visits. As soon as I think he can handle some visitors, I’ll post it on the blog.

Mike’s cousin found a great website that a long-term survivor of glioblastoma wrote. It’s a guide to help others who are diagnosed with the tumor. It is a little old but gives some good general information. There is a lot of misinformation out there on the web, so you do have to be careful about what you read. I was trying to create a link to this website on the sidebar of this blog, but the hospital network is blocking me from doing that for some reason, so I’ll just give the link here in case you want to read it: http://home.earthlink.net/~sdepesa

Evening Update

Mike became a little sick this afternoon necessitating a CT scan of his brain. It came back okay, so we are still in the same room. Mike is still not himself, so please hold off on visiting until I update the blog.

We have been reading your comments and appreciate all of your prayers and support.

Biopsy

Mike made it through the biopsy fine; he is recovering now. He did not have to go to ICU and is in the same room he's been in all week. Mike is still pretty out of it, so today probably won't be a good day for visitors.

The doctor said they may have some general information by the end of the day, but we won't have a full report for three days or so. (I'm assuming that's three business days.)

MRI and Biopsy Update

We’re sitting around waiting on the hospital to call Mike down to have his MRI this morning. He’s having what is called a stealth MRI, where they put about 10 plastic disks called “fiducels” (fuh-doo-culs) on his head. He has to keep them there through the biopsy tomorrow. They pretty much just work him in between scheduled MRI’s, so we have no idea what time it will be done. It could be anytime between now and 8:00 tonight.

Here’s the deal on the biopsy scheduled for tomorrow:

It will be a “needle biopsy” which is the least intrusive. It makes the smallest hole and has the least recovery time. They’ll just put staples in his head afterwards. (I think I’ll swing by Office Max today and pick up some extra staples, just so they don’t run out.)

Mike can have nothing to eat or drink after midnight tonight. They’ll take Mike down about 6:00 in the morning to start prepping him. They’ll take him to pre-op, and the actual surgery will begin around 7:30 or 7:45.

The surgery itself will take about an hour, but he’ll be down there between an hour and a half and two hours. During the surgery, they will send a frozen section of the tumor down to pathology to make sure they have what they need to read it, just so they don’t have to repeat this entire process in case they don’t get the right thing to begin with. They have told us it will take four to five days for the results, but I’m pushing for a preliminary report tomorrow.

Today's Info

Below are some questions we asked the physician's assistant today and the answers he gave us.

What are the odds that the CT scan and MRI are wrong?
One in a million. That gives us a chance…somebody’s got to win the lottery.

Where is the tumor located?
In the front midline of the brain.

What does that part of the brain control?
Cognitive ability—the ability to think clearly

What is the likelihood of seizures?
Minimal, but they are possible

What We Know Now

It takes a lot of time to write these posts with detail. As soon as I have the time, I’ll write the details of what happened when we went to urgent care then on to the hospital.

In the mean time, here’s what we know at this point (which isn't a whole heck of a lot):

Mike had a CT scan on Wednesday that indicated he has a brain tumor that measures 4.5 centimeters by 4.7 centimeters. He had an MRI done on Thursday and it confirmed the findings of the CT scan.

When we went to the doctor, his brain was swelling, and that is what caused his odd behaviors.

He has been in the hospital since Wednesday night and has been taking steroids to reduce the swelling.

Once the swelling is down, he will have a biopsy to determine exactly what kind of tumor he has and our options for treating it. He will have an MRI on Tuesday to check on the swelling and a biopsy is tentatively scheduled for Wednesday. It will take four to five days to get the results from the biopsy.

First Signs

Mike began having headaches and dizziness in June. I noticed the following odd behaviors beginning around Christmas:
Difficulty concentrating/delayed response when answering questions
Loses train of thought
Not going out to buy general household items
Sleeping late
Staying around the house all day.
Not going to work (even though school was out for Christmas break, Mike usually goes in on his days off to get things done)
Not watching college football games
Not checking cell phone messages
No concept of time