Getting reacquainted with cancer... for the third time

I cannot believe we have not posted in three years! I'll get down to it...

I had a brain MRI done about a week ago and today I got to see my Neuro-Oncologist... but not my regular doctor.. Dr. Conrad unfortunately passed away from an accident that apparently occurred at his home. Sad thing, he was a rock star, one of the top 100 is the US. I'll miss the guy. So instead I saw Dr. Groves, he and Dr. Conrad both came to Austin from MD Anderson Cancer Center in Houston, they know the staff back there very well. Good thing too, because today the scans showed an abnormality.

Six months ago the scans were perfectly clear. Today, which was my five year scan, shows a mass about 5mm across in size below the original tumor site further down in my brain. Dr. Groves is pretty certain that the tumor, an Ependymoma Grade III, has returned. We know its been there less than six months, but we do not know the pace it is growing at.

Top row of images show the white dot which is the tumor, bottom row is six months ago.

Tomorrow Dr. Groves is going to speak with Dr. Lang back at MD Anderson Brain and Spine, who was my neurosurgeon back in 2011, they will discuss the scans and come up with a plan. Right now there are three obvious options: surgery (again), radiation (last done in 2006) and the experimental Delta 24 (DNX2401) trial that Dr. Conrad and Dr. Lang worked together on. In addition, we will be doing another MRI in six weeks to see if we can chart the growth rate of the tumor.

We don't know much more than that at this point. When I heard the news I felt like I got the wind knocked out of me for a bit, but had to realize that we have this and this is the smallest we have ever found it which is a good thing. On the long drive home filled with rain and traffic, I notified Holly, family, and my closest friends in my battle to let them know. Now I am letting you know because we have never kept this a secret. We hope that what we have gone through over the past ten years has helped somebody out there going through something similar. Am I scared? Yes. Anxious, sick, worried, tired? All yes.

I don't want to go through this again. I hate it. I hate it for anyone that has gone through this. The uncertainty and questions. I don't want to go through it again and I don't want Holly to either. But now there's Abigail. I never wanted her to have to experience Daddy going through this like he did the past two times, but she will.

I know what you're thinking.. how can you help? Pray. Pray for a miracle. Pray for healing. Pray that the dot in the MRI was an anomaly and won't be there in six weeks. Don't feel sorry for us, fight with us. Encourage us. Be there if we need it. That's what we'll need in the coming weeks.
We'll get through this. I'll survive. I may lose more function after another surgery, but at least I'll have my life and family.

‪#‎cancer‬ ‪#‎braintumor‬ ‪#‎ependymoma‬

Brain MRI Results July 2011

We went to MD Anderson in Houston for a post-surgery MRI on Monday and on Tuesday we saw Dr. Conrad, my Neuro-Oncologist. He said that everything looks good and they do not see any signs of the tumor. The cavity that was left after the tumor was resected has filled in a bit and it looks like the swelling has reduced significantly. All of this is great news! The doctor was pleased with my progress and we go back in three months for another MRI, which will be in October 2011. At that time we will also visit with a Radiation-Oncologist to see what their thoughts are regarding radiation therapy. All in all, great news as we expected.

This week I also discussed my progress in physical therapy with my therapist, Jacqueline. I am meeting and/or exceeding many of the goals that she set for me three months ago. As a result, we will be moving from three one hour PT sessions a week to just two starting in August. This is important because I will start working full time again in late July and this will allow me to start working at a more regular time three days a week instead of two. I will still need to focus on exercising at home at least thirty minutes a day, which I always don’t want to do, so please pray for me on that one.

Physically, I feel fine and am rarely napping anymore. My energy level is much higher and we recently had the wheelchair that we were renting picked up as we didn’t feel that we needed it any longer. I am no longer using the cane and can walk fairly well on my own. I am still lacking strength in my hamstring and ankle, and don’t seem to have any voluntary movement in my toes or the ability to move my foot side to side, those losses are a bummer, but life will go on because I’ll be able to walk better and better even without those functions.

Thanks for checking in once again. I should get the new MRI images next week and will post pics from it when I get a moment.

-Roger

Back to MD Anderson for follow-up

I have to make this a short one. I’ve been doing very well and am getting stronger every day. I’m still doing physical therapy three days a week from 8-9am. My therapist, Jacqueline, is a master. She is young but very creative and always knows how to challenge me, which I like. She is a Godsend! I started back to work (at home) a few weeks ago… four hours a day at first. This last week I bumped up to six hours per day. I go back to a full time schedule in late July. PT along with work has been challenging for me to stay energized all day long. I have to remember to eat well and get rest when I can. Amazingly, I am not napping during the day at all anymore, which means my endurance level is picking up.

Tomorrow and Tuesday (7/11-12) we head back to MD Anderson in Houston for a follow-up MRI and visit with my Neuro-Oncologist, Dr. Conrad. We pray that tumor has not grown back… will you pray with us? We have decided against doing radiation therapy this time around because my gains in PT are still very significant. Once I plateau, we’ll start with the radiation. I’ll post again later this week with the results of our visit. Thanks everyone! We feel your prayers.

-Roger

Home Sweet Home, but back to MDACC Tomorrow

Hello, world! It’s me, Roger... blogging again. First of all, many thanks to my sweetie, Holly, for being so diligent and blogging almost every day while we were at MD Anderson. And for being there every day, by my side no matter what. I love you babe! When we last left you here on the blog we were still in Houston and ready to be discharged on April 5th. Everything went as scheduled and we managed to get discharged early enough to venture out and get some lunch, shop for a pair of jeans for me for dinner and then celebrate our 8th wedding anniversary over a delicious nine course dinner in the evening.

Stitch removal - Click for more

The following day we had our follow up appointment with Dr. Lang, my neurosurgeon. We were relieved that he decided that the stitches could be removed. That meant we did not have to stay overnight again in Houston and have them removed on Thursday. He answered all of the questions that we had for him and he also explained to us that the tumor had been analyzed and it returned as the more aggressive Anaplastic Ependymoma, WHO Grade 3. What does this mean? It was more aggressive this time around and this is the highest grade for an ependymoma. Did they get it all? Looking under the microscope during the surgery, Dr. Lang believes so. But it would be foolish to think that every single cancer cell was removed. As a result, tomorrow we are off to MD Anderson again to once again visit with Dr. Conrad, my Neuro-Oncologist. He is the doctor that we did the clinical trial with and we will receive further guidance from him from this point forward. I have no idea what he is going to recommend so I will not speculate but will fill you in on the details after we meet.

OT/PT Eval - Click for more

Last Friday I had my Occupational and Physical Therapy evaluations at St. David’s Outpatient Rehabilitation Services and started both today. I will have two 30-minute sessions of OT for four weeks and three 60-minute sessions of PT for six weeks if not longer. The sessions are challenging and tiring, especially PT. At this point I am not able to move anything in my right ankle or foot and the muscles in my right leg are very weak, but I do have complete sensation. The down side right now because of this deficiency is that I cannot drive.

PT / E-Stim - Click for more

Today we did what is called electrical stimulation (E-Stim) where pads are placed on specific places on the skin and an electrical charge is passed through to make the muscle contract. It basically feels like getting shocked, but is not dangerous and is controlled. The premise is that while the electricity is being applied and activating a particular muscle I am to also ‘think’ of moving the muscle at the same time. This can create a new pathway in the brain to activate the muscle that is no longer working due to damage in the brain. Five years ago I was not able to move my ankle at all and this technique taught me how to do it again. We are giving it another shot. I know… fascinating, right?

Lastly, I wanted to share the MRIs from the day before the surgery and the day after the surgery.

MRI Pre-Surgery: 23Mar2011 (Click to enlarge)

The final size of the tumor pre-surgery: 3.8cm front to back x 2.3cm side to side x 2.4cm top to bottom.

MRI Post-Surgery: 25Mar2011 (Click to enlarge)

Yep, there’s a big o’ hole in my brain now.

-Roger

Less than two weeks!

We are less than two weeks away from ‘Game Day’. It is pretty much official that my surgery will take place starting the morning of Thu, Mar 24, 2011. We are driving to Houston the afternoon of Mar 21 because I have some tests early the next morning. I have a blood test tomorrow (3/15) and am seeing an internal medicine doctor at MDACC on 3/22 so that they can take more blood and clear me for surgery on 3/24. If at any time the doctors think the Pancreatitis is still lingering, they will call off the surgery. Apparently some type of anesthetics can make the pancreas act up again and they obviously don’t want that to happen.

The question we have been getting as of late is ‘how will people know the status of the surgery while it is progress and when it is completed?’ We obviously can’t call everyone. Holly will be posting updates here on the blog. The blog then updates Facebook and Twitter. All information will be posted on the blog first, so this is the place to hang out on game day. In addition, if you are not all that much into Facebook and Twitter, and you can’t get to the blog, you can sign up to have the latest updates emailed to you for free. Just go to www.mommaerts.org on the right side there is a section titled “Get blog updates via email, Facebook, Twitter and others” just enter your email address in the box and click the ‘Subscribe me!’ button. This feature was apparently broken for a while, but I have fixed it. It will email you, post an update you on your Facebook wall or send a message to you on Twitter; it can even let you know via LinkedIn, Skype, and AOL, Microsoft and Yahoo Messengers. Please check it out. Did I mention that this service is free? I scour only the best free stuff for you my friends!

That’s about it. We’re almost done doing our 2010 taxes. And we have the finances under control. We leave for Houston in a week!

-Roger

Brain Surgery Date Set?

Not a whole lot to share but it looks like the surgery is scheduled for Thu, March 3, 2011. I only know this because MD Anderson has a web portal where you can see all your records and appointments and out of curiosity I thought I'd see if they posted anything yet, and they did. I have a bunch of PreOp tests, like the MRI,  the day before but I don't see the CT, so they must still be getting things together. I guess they will give me a call when everything is 100% lined up. Just a quick update for you. Will pass on more when we know it.

-Roger

The Verdict: Brain Surgery... Again

Well folks, the verdict is in… the next step is brain surgery... Again.

It was kinda funny to me that we drove 200 miles and 3 hours and only talked to my neurosurgeon, Dr. Lang, for about 15 minutes. He really didn’t sugarcoat it at all, which I appreciate. He just came out and said that it needs to come out. We asked about the trials that Dr. Conrad mentioned. The virus trial is only for patients that had a grade 3 Ependymoma that was removed and then came back. I only had a grade 2, so that one is out. The other two chemo treatments are done after removal of the tumor so we can't do those yet. He said that it is growing, and really needs to come out before it causes any damage.

There are both good and bad things:

• The bad? It’s freaking brain surgery people! There a lot of things that could go wrong.
• The worst? I could die. Just saying.
• The not so worst? I could lose movement and possibly feeling in my right leg forever, maybe my right arm and torso, and my speech center could be damaged.
• The best? I’m a little tired and weak at first but make a pretty good comeback.
• The bestest of all? I’m having my surgery at MD Anderson! It is one of the best, if not the premier cancer hospital in the world. That’s pretty awesome. (I hope my insurance doesn't disown me. Can they do that? Especially if it’s the government’s Tricare??)

First they have to look at the calendars to make sure all the staff are necessary available to perform the procedure. We’re currently looking at a time frame between Feb 22 and Mar 3. Incidentally, Mar 3 is the 5 year anniversary of my first craniotomy. Weird, huh?

Dr. Lang told us that because of the blood vessel that runs through the tumor they want to do a CT Angiogram; this will allow them to map the blood vessels in my brain so that they can see what this vessel might be feeding.

Next, they may do a portion of the surgery with me awake. They would start the surgery like normal, with me completely out, but then bring me out of anesthesia so that I could answer questions and they might also stimulate parts of my brain to see what happens to map it. I found an interesting excerpt from the Ohio State University Medical Center website in an interview with Dr. E. Antonio Chiocca, director of neurological surgery at Ohio State University Medical Center, regarding awake brain surgery:

Patients undergoing awake brain surgery are anesthetized just enough so they will doze during the incision in their skin and removal of a section of the skull. Anesthesia is then withdrawn and patients are coaxed into consciousness so they can speak during procedures on the brain itself.

“You need a very good team to do this. Neuroanesthesiologists give patients just enough medicine so they will sleep during the first phase, and then they will wake them up when we get to the brain,” Chiocca says. “We have a speech pathologist talk to the patient as we remove the tumor. If we notice any trouble speaking, or if the patient develops a halting pattern of speech, we know we’ve gone too far and we stop.”

"Though these brain centers are universal among patients, the mapping and imaging allow physicians to adapt to the “uniqueness of each brain,” Chiocca says. “And having the patient awake allows us to take care of individual differences.”

Patients who undergo awake brain surgery often are able to leave the hospital and return to normal activities within 48 to 72 hours.

Sleeping patients whose surgeries occur near these speech, memory and motion centers of the brain are at higher risk for suffering temporary or permanent deficits, but some patients will opt not to be awake, Chiocca says.

I am totally for being awake during the procedure if it helps them and gives me a better chance of coming out with less deficiencies.

MD Anderson BrainSUITE

Last, if they deem it necessary (I think it is, but that’s just me) they will perform the surgery in MD Anderson’s BrainSUITE. It is basically an operating room with an MRI machine in it so that the doctors can see what they are doing in real time. It helps them to see if they have removed the entire tumor before they end the procedure. In 2006, MD Anderson was the first hospital in the world to purchase and implement one of these systems. There are currently only six in the US. This thing is cutting edge and I hope that they decide to utilize this awesome technology.

• So how do I feel about all this? Well, I’m ready, I’ll tell you that.
• Is it scary? Yes, I’m not going to lie.
• What are my fears? I’m not afraid of death. These guys are going to take care of me and I know that’s not going to happen. But if it does, Holly and I have talked about the ‘ifs’ and there are some preparations we need to make. We’re not stupid. I mean heck, someone could trip over a cord in the OR and kaput, I’m toast. You have to think about these things!
• Am I worried about how it might affect my body? I’d be lying if I said no. But, if I survive and they get this monster out of me forever, no matter what deficiency I have, I’ll be the happiest man in the world. I’ll deal with it. I have learned how to live with limited mobility on my right side and I can do it again.

Dr. Lang said that I’d probably have to recover at MD Anderson for 3-5 days and could go home if there are no complications. If I do require therapy they have physical and occupational therapy in the hospital and could stay there for a few additional weeks if necessary. I’m looking forward to putting this all behind us and moving on. I’m tired of cancer lurking over me. I just want to give cancer the finger like my friend Eric did. No, really. He had cancer on his finger and they amputated it at MD Anderson. I’m not kidding. Well, I’m not going to give them my finger, but they can have my tumor, and just a little bit of brain tissue for clear margins. As soon as we have more info, we’ll let you know.

Thanks for reading and please continue to pray for me and Holly. We’ve got a lot going on right now, (Holly is having laparoscopy next Thursday) but somehow just being here together for each other makes it all better.

-Roger

First Trial Ends, Back to MDACC for Other Options

Holly and I made the trip back to MD Anderson in Houston last week for my every other month checkup while on the trial. For some reason I had a feeling this was different, and I was right. When we started the trial, one of the guidelines was that if the tumor grows 25% larger than it was at the start of the trial, we must stop the trial. We found out that we are now at that point, and we have to stop this trial. I have to say, I don’t know why, but I had a feeling this was going to happen. Now, stopping the trial is not necessarily a bad thing. First of all, I don’t have to take gobs of pills everyday now! Another plus? I’m regular again and don’t have to rely on stool softeners and fiber to counteract the drugs every other week! (I know, gross, but you don’t know what this means to me.) Lastly, they don’t know for sure, but even though the tumor is still growing, the drugs may have slowed its growth. So they got some data from me for the trial and that’s a good thing. I hope it is useful for someone down the line.

Where do we go from here? Last week when we visited with my Neuro-Oncologist, Dr. Conrad, we discussed the MRI. They are unclear of exactly what they are seeing. It could be tumor, necrosis (dead tissue), cystic tissue or something else. He believes that at this point the best thing to do would be to perform a biopsy of the tumor to find out exactly what they are dealing with so that it can be treated properly. After that there are several options available:

• Virus trial, where a reengineered virus is inserted directly into the tumor, the virus eats the tumor, stops at brain tissue and then dies. I wrote more about this trial back in June, check it out.
• There is one chemo treatment option that is new that I can’t remember if it is a trial or not and another that is a trial that Ii think is not quite available yet; both are IV chemos.
• Lastly, all out surgery, which we are trying to avoid.

We have an appointment to see my neurosurgeon, Dr. Lang, tomorrow (2/2/11) at MD Anderson to talk all of these over and see where we go from here. As soon as we know what’s going on, I’ll let you, our faithful readers and supporters know.

I wanted to share some stats and images with you so that you can see where how things are progressing.

First of all, I decided I'd make a table so that I could see for myself how the tumor is growing. I know it sounds weird, but I need to know these things and thought it would finally be good for me to put it on paper. I did it in Excel but can't make a table in HTML to save my life, so I took a screenshot. All the measurements are in millimeters and I took them from all the Radiologist Reports I get from each MRI. As you can see, even with the medications there has been pretty steady growth, but to the doctors, they see it as slow growth.

Next, I wanted to share two sets of MRIs. The first was taken at MD Anderson on Jun 1, 2010. The tumor is still fairly small and compact. Click each one to see a larger version.:

Brain MRI - June 1, 2010

Last, here's the latest MRI from last Monday, Jan 24, 2011. As you can see, there are some areas of black that have a white border, they think those might be cysts, but just are not sure:

Brain MRI - January 24, 2011

I just noticed that the images from last week are a bit darker, but i think you get the point. There are definitely some changes and the doctors want to know why it looks the way that it does. So, off to Houston again tomorrow. We'll let you know what the plan is soon.

Thanks again for all your prayers and support.

-Roger

Possible Clinical Trial

If you have not read our last blog, take a look at it now before you read any further or you might be a bit lost. You can find it here. Holly and I went over our options again yesterday and think we know what we’d like to do as long as Dr. Lang is in agreement. So after that, we set out to Minute Maid Park to watch the Houston Astros take on the Washington Nationals. The beginning of the game was a little boring, but the end was fantastic. Bottom of the 9th, 2 outs, 2 men on base and Astros are down with a score of 6-7. We thought all hope was lost, but then Lance Berkman singles to left and two runs come in to win the game. It was pretty cool… literally too! They closed the roof and turned on the A/C, so it was actually pleasant to be there. We thought we were going to sweat like crazy in the humid evening air, but it turned out to be a great evening after all.

Today we were scheduled to see Dr. Lang, my Neurologist, at 2:45pm; but we got a call yesterday asking if we’d be interesting in moving the appt earlier so that we could leave town earlier and we gladly said yes. We got there at 11:30am and finally saw him at 12:30pm. It would have been sooner, but their paging system was down and they had a tough time letting him know we were ready. It’s okay though… I had fun lounging on his recliner in his exam room and playing with the tools they use to show things to patients… my favorite was the brain I could take apart and put together and wouldn’t you know it, he walked in just as I got it apart. I put it together again though pretty fast. Seemed kinda easy; just saying.

Anyway, he said that he had spoken to Dr. Conrad, my oncologist, regarding the trials and explained each one to us. He agreed that the Lapatinib and Temozolomide trial is worth trying. The Delta-24 trial is really only for people that have a grade 3 ependymoma. They don’t know if my tumor is now a grade 3 and the only way to find out is to do a biopsy by cracking me open. But if they are already in there they might as well remove it, so it is a catch-22. There are some other factors for that trial that make it a not so great fit for me, so for now, that one is off the table. The last trial, 744, he didn’t know about, so that too is off the table for now. He feels that in the end, the tumor will have to be surgically resected (removed), but since it is so slow growing, the first trial is worth a shot.

So that was it. Decision made. They notified Dr. Conrad that we are interested in the Lapatinib and Temozolomide trial and we should be hearing back from them soon. Apparently we will have to go back to MDACC again to again meet with Dr. Conrad to talk about the trial and all the specifics behind it. I am hoping it is as soon as next week. If we start the trial in the next weeks, at the end of the two rounds of the trial, if no progress is seen and the tumor needs to be resected, it will most likely happen no earlier than August 2010. This will allow us to make all our trips we scheduled this summer! I might feel like crap, but we’ll get to be with friends and family, which will be a huge blessing.

A few last notes… To be sure that this tumor was an ependymoma, MDACC wanted some slices of the tumor sent to them from Washington, DC. I put in the requests to the DoD in DC and MDACC got them, examined the slides and agreed that the tumor was an ependymoma, grade 2. Also, the MRI from yesterday revealed that the tumor has grown a bit more, just 1-2mm in three months, which is slow.

I'll let you know when we have anymore news. Thanks for the prayers and support.

-Roger

Non-Surgical Options??

We had an interesting visit today at MD Anderson! We started early with an MRI, blood tests and then moved on to see my Neuro-Oncologist, Dr. Conrad. He already looked at my MRIs from this morning and told us that in his opinion, the growth was recurring tumor growth, not radiation necrosis. We went over the new images and it appears that the tumor has grown an additional 1-2mm since February 2010, which is very slow. With that in mind, he told us that we have the luxury of time, and with that, several options. First of all, surgery is always an option. But there are a few clinical trials I may be a candidate for.

We discussed the surgery again and Holly brought up the blood vessel that goes right through the tumor. Dr. Conrad said that Dr. Lang (my neurosurgeon) is very patient and again gave me a warm fuzzy that he is, in fact, a badass. Dr. Conrad said Dr. Lang is very patient and would do everything possible to avoid cutting the vessel out. But since the tumor is taking it sweet time and I’m healthy he suggested several clinical trials which are very interesting.

First, there is a trial being conducted by the Collaborative Ependymoma Research Network (CERN) Foundation specifically for my type of tumor, which is an ependymoma. Basically I’d be on a chemo drug and a new drug that is a signal inhibitor. It targets this type of tumor and I am a perfect candidate. I’ll have more details on this later, but you can read about it here. This would put any surgery off for several months until they see if this works. I could be on this treatment while in Austin, have blood tests there and only have to return to MDACC every two months for MRIs and would continue with the treatment as long as they see progress. Progress would be the tumor shrinking.

Another trial that I am eligible for is a very interesting one. There are two groups in this trial which has been researched by both of my doctors along with other doctors. In group A, they make a small incision to get to the tumor and inject a virus named Delta-24. It is a modified live virus. Sounds Sci-Fi, eh? They inject the virus directly into the tumor and it kills the tumor cells but leaves brain cells alone. In group B, they insert a catheter into the tumor and leave it there. They then inject the virus and in two weeks they suck the tumor out. Group B should be approved by the FDA for testing in the next few weeks. You can read about Delta-24 here and see both of my docs.

Lastly, there is another drug called 744 that will be out in trials in the near future. He didn’t talk a lot about it, but said it may also be a non-surgery option in another few months. There's a little about it here.

All of this is very interesting and does not mean this is my last hope, but rather because the tumor is so slow growing, is an opportunity to try an alternate treatment before another invasive surgery. Tomorrow morning we meet with Dr. Lang and discuss all these options again with him and maybe make a decision. I am excited to have the opportunity to participate in a trial and possibly make history with a new drug and maybe help save more lives in the future. We’ll have more info tomorrow after the appointment.

Again, thank you all for your prayers. Wow, what a road we have been traveling down. As for Holly and I, we are off to have some fun and are going to catch an Astros game tonight against the Washington Nationals, Can you believe I rooted for the Nats when I was in DC? I guess I felt sorry for them because they were new.

-Roger

2/4/08 MRI Results

Just a quick note to let you know that I went to see my Rad/Onc at the NNMC in Bethesda and we sat down to look at the MRI. And... it looks just about the same as the last two! There is definitely something up there and it is most likely scar tissue and not tumor because it is not growing at all. He said that we can probably move the MRIs from every three months to every four to six months. Sounds good to me! It's funny though... I really do fall asleep in the MRI even with all the banging and clattering going on. It's just a part of life now. Thank you to everyone for your prayers!

-Rog

MRI Monday Feb 4

First, for those of you that get the blog emailed to you, something happened to the service this past weekend and plogs that were written late last week were not emailed at all. I made the system email them to you just a bit ago. Sorry about that... if you want to get the blog emailed to you, scroll all the way down to the bottom of the webpage to sign up... its free!

I have another three month MRI Monday afternoon at 5pm ET to see how things are up there. Please continue to pray that the tumor is still gone and that healing is continuing. I meet with my Rad/Onc Tuesday morning to review the results. I'll let you know how it goes.

This week is going to be a busy one... I finally have an appt with the VA to have my physical by them for my VA disability claim. And I have a meeting with my pro-bono attorney to prepare for my hearing on Feb 13 to appeal my initial disability rating from the Army. Yes, I will get a disability rating from the Army and the VA. I'll have to explain that at a different time. I'll try to get you caught up on the lowdown this week.

Oh - and what an awesome game tonight. Personally, I was glad to see the Giants get the win over the Patriots in Super Bowl XLII. The Manning brothers get back to back rings. How cool is that?

-Roger

31Oct MRI Looks Good

Just a quick post to update you on my MRI last week. Basically, it looks stable and possibly even better than the one three months ago. But this one was done in a different machine at a different hospital, so the differences may have contributed to that conclusion. There doesn't appear to be any new growth so things are good. All of my doctors and therapists are currently submitting new and up to date information to the MEB. I have no idea if that will slow things down or speed them up. With the holidays approaching, I get the feeling they will slow down, but who knows? Thanks for the prayers!! :-)

What is normal? And HAIR!!

I have been shaving my head with a razor about twice a week. I usually do it on Sunday and Wednesday nights. Before I shaved this past Wednesday, I thought I felt a little bit of 'peach fuzz' on the top of my head where it had been hairless. Today, I can confirm that there is hair growing on the top of my head! I can feel it, but its almost invisible – very light colored thin hair. But… it is growing back in! You can’t imagine how exciting this is for me. I just can’t wait to not have to worry about shaving my head and just letting my hair grow. And having a normal head of hair will be a step toward normalcy for me. Ever since the surgery, something’s been going on. I just want to try to get back to as close to normal as possible. I don’t think I’ll ever be normal again though. In fact, I’m not even sure what normal is. I thought I was normal before the surgery, but I wasn’t – I had cancer and didn’t even know it. Kinda’ brings a whole new meaning to the word, doesn’t it? What the heck is normal?

We had a great weekend. I went to sleep very late Thursday with a headache and woke up with it again Friday morning. I was tired and decided my body needed a day off. My Oncologist, Dr. Duelge, also said I need to listen to my body. I keep wanting to just get back to a (here we go again) normal routine. But I start to notice at the end of the week that my leg starts to get a little sore and tired, and I get more fatigued each day. In fact, my Physical Therapy doctor, Dr. Milani, told me two weeks ago to listen closely to my body too. I emailed Dr. Duelge last week to ask him about my fatigue. I thought that maybe it was a side-effect of the radiation. He laid it out pretty well for me in his reply:

“…I suspect you will not be able to get by on 6-7 hours of sleep for 6-12 months after the end of treatment. You had major brain surgery (with complication of right-sided weakness) and then brain radiation for 7 weeks. … Based on what you've said, I think it may just be the getting back to work along with not enough sleep for the new Roger (i.e. the one who just had major surgery and then brain radiation).”

I have a hard time finding the fine balance between my work and my body. I feel like I have a responsibility to be productive at work. But I do that at the expense of my body. I need to find a balance, but actually act on it this time. This weekend was a great but restless weekend, in my opinion. We stayed up late Friday, stayed busy Saturday, got up super early because Holly wasn’t feeling well Sunday morning and went to church and lunch. When we got home I was exhausted and laid down for a nap. I ended up sleeping for almost four hours, getting up just before 7 pm. I was up and rested, so I took the opportunity to hang out with my good friend Matt O. We had a great time, and I’m glad we met, but now it’s almost 1:30 am and I’m still not tired. Maybe if I just lay down, I’ll fall asleep.

One last thing - The Matt I mentioned before is one of the first people that befriended me when I came out here. He has become one of the best friends I have ever had in my life. We can talk about anything… and I mean anything. He’s getting married to a wonderful gal in October. I get to be an usher at his wedding! Anyway, Matt’s mom, Sandy, has been battling breast cancer for several months now. She has undergone chemo, but it is not having much of an effect on her cancer. She is scheduled for a mastectomy Monday at 10am CDT. Also, Holly’s father, Harvey, is undergoing a procedure to find out why his tummy has been so upset lately. His is scheduled for the exact same time. Please say a prayer for Sandy and Harvey – that they fear nothing and recover quickly. I’ll have results for you on each one tomorrow.

9/11 Events

I uploaded the pictures from our trip to Nashville today. I just need to tag them, add descriptions and make them public. Holly and I have been playing catch-up since we got home last week and I think we’re finally there.

The weather has been just beautiful here lately. Highs have been in the 70s and 80s and not too much humidity in the air.

As you know, yesterday was the 5th anniversary of the terrorist attacks here in DC and NYC. There was a lot of stuff going on at the Pentagon, so I avoided the area and went to our HQ office instead. There, I attended a 9/11 Commemoration Ceremony. The agency I work for lost seven employees at the Pentagon on that fateful day. The Director of our agency, an Army Lieutenant General, said a few words; there was music from a chorus and a short video. During the video, I could hear some very loud sobbing from the audience below. Family of the seven were present at the ceremony, but I think it came from somewhere in the audience. I guess it struck me when I heard their pain – I think the majority of us have had enough time to process what happened. But, there are some people out there that are still hurt; still suffering. I’m going to pray for peace for them, I hope you will too.

After the ceremony, I saw the director in the lobby greeting a few people. When I was in the hospital, he sent me a letter wishing me well. At the time, I was touched that word of my condition moved up the chain so quickly to the top, and that he even sent me a letter. I have been wanting to thank him and I figured, when the heck?.. I decided to thank him right then. He was talking to someone and I walked up to him and waited. He turned around, looked at my nametape and I could tell it rang a bell by his expression. He did remember and asked me how I was feeling and what was left in the way of treatments. He was very friendly, personable and it was good to be able to thank him in person. I shook his hand and was on my way.

Lastly, I’m having a hard time getting motivated to exercise again. Please pray for me on that one. I need to lose a few pounds – being so sedentary during my therapies was not good for my girlish figure. :-P

"Home" Again

Holly and I are back "home" in Arlington, VA. We had a wonderful weekend and we can't wait to share our trip with you by way of pictures. It was fantastic to see my mom and dad again. My sister Mirna is doing well and Joey readjusting to being back stateside. They kept him very busy the whole time we were there, so he was tired out. Their daughter, Ariana, is absolutely the cutest little thing. More soon!

Promises Kept!

I'm keeping good on my promises today, but before I do…

I want you to know that after the seizure a month ago, my Neurologist and Oncologist urged us to consider staying in the DC area longer. After thinking, praying and talking to friends and family, we decided they were right. It would be good to be in the area near the excellent medical facilities as long as possible. And, since the next MRI is scheduled for Sep 20, it will give us some time to decide what to do if the MRI is anything but normal. First, I talked to my boss about it, and then we both had to go talk to the Deputy Director of our Directorate – also the Agency's CIO. We had a pleasant meeting and he agreed to allow me to apply for an extension. I filled out the paperwork and as I understand, it has been submitted for approval. If it is approved by the Army, we'll be in the DC area through the end of February 2007. The last MRI I had was before the Radiation started – where they saw a very small "area of enhancement." This is why they decided to do a full aggressive course of radiation instead of a shorter course. My Oncologist said that they normally do a follow-up MRI three months after the radiation is completed. The radiation finished June 19. So, Sep 20 is when we find out what the heck is going on up there – pray that nothing is going on! Anyway, that's it for that.

I've posted some pics of Anthony's trip. You can see the whole set here. There's one very cool picture that I took at the Natural History Museum. I took a bunch of pics of the main room and then used a free program called Autostitch to put them all together. All you have to do it select the pictures and it does all the work. Check it out! Oh - and if you peeked at the pictures already, check them out again - I added comments and stuff.


As I mentioned before – my hair is growing back in nicely. Hair is growing back in everywhere except for the rectangle where it fell out first on the top of my head. Check it out…

Here's a pic from May when a rectangle started to form on the top of my head.


Here are some pics we took last night, before I shaved my head this morning.



Weird, huh? You can see that the areas that were exposed to radiation are growing back in with less and slightly thinner hair. Click the pictures and check out the notes that I posted on each one.

So the neighbors… and the baby… we gave them the book and within a few days, we noticed that the baby would start crying, but then would quiet down pretty quickly. Then last week we got a small envelope under our door. It was a thank you note from our neighbors. They thanked us for the book and said that is has helped them immensely already. And that they had already recommended the same book to some of their friends! I'm glad we were able to help them (and ourselves) out. But I guess they still have bad days. Last night the baby was wailing from about 10pm to almost midnight. I just couldn't get to sleep and the earplugs were uncomfortable. I had planned to get to sleep at 10:30pm and wake at 5am, but after that, I could not do it. I got up late and my whole morning routine was behind schedule. Keep praying for them!

Holly and I are headed off to Nashville, TN Friday afternoon to see my sister Mirna, niece Ariana, mom, and dad. And Joey is coming back from Iraq on Thursday! So, it will be a mini family reunion. I haven't seen my parents since the surgery, Mirna and Ariana since Christmas and Joey since April of last year. We're going to have a great time. The only thing that could be a problem is the weather. Tropical Storm Ernesto is predicted to hit Florida later today and then track up the east coast up toward Virginia. Right now they say it will get to DC (if the track stays put) Friday morning. We're set to fly out of DC around Friday afternoon. I hope the heavy rain doesn't affect our travel.

No news is good news?

Not much going on since my last post. I’m back at work on full days. I have been working to get our most recent pictures posted for you. We’ve been waiting on what’s up next for us here in DC. And we’re off on a trip this coming weekend. I’ll have details on all of that this coming week… including the pictures I promised… I promise!

Oh yeah – I have a follow-up appointment with Dr. Milani at NRH late Monday morning. I think this might be the last one with her – she was my attending while I was in rehab. And lastly – the follow-up MRI has been scheduled for Sep 20th. More soon!

Promises, promises

So, my mother-in-law, Helen (Hi Helen!) , wants to know what’s up with the blog. Well – I have been feeling pretty good and have been pretty busy working and stuff. Things are so much back to normal, that I just haven’t much to report. But I’m sure I can rustle up a few things… hmmmmm…

Okay – first, my visit with Anthony was fantastic. We really had a great time! We did all the touristy stuff and also managed to relax and spend some time talking. He even helped me with the camera equipment at church on Sunday. Yes, we have pictures, no I haven’t uploaded them yet. Soon – I promise.

Next, the hair. It is growing out more and more. If you take a look back at the pictures from when my hair started to fall out, it fell out in a rectangle. Well, the area that doesn’t have any hair now looks like… well… kind of like a rectangle. We need to take a picture to show you. Soon – I promise.

The weather here has been very nice lately. The air has been dry and temps have been fairly comfortable. Nice weather to get outside.

And – finally, our neighbors had a baby about three weeks ago. The poor little girl cries for hours straight. And their bedroom is on the other side of the wall from ours. She wakes us up about every other night with her loud wailing. I was at the eye doctor yesterday and she was pregnant. She asked me if we had kids, but I told her no, but our neighbors did! Anyway, I told her about the crying and she told me about a book that the Air Force recommends and teaches to new parents. It is called The Happiest Baby on the Block. They also have a website: www.thehappiestbaby.com. Holly was at the PX and bought a copy for them. We’re going to give it to them tonight. I skimmed through the book and it has lots of info on how to calm crying babies. So, if they read the book, she should be sleeping peacefully in the next few nights. If she’s not, you’ll know – I promise.

Five Months!

Today is August 3, 2006 – today I celebrate five months to the day since my surgery. I have not had any seizures since the last one and the meds are not making me sleepy or anything. I have been going to work on half days all week. Next week I move up to six hour days for a couple of weeks. My hair is starting to grow pack in a few small patches. I have very thin hair on the very tippy top of my head growing back at a pretty fast pace. It seems to grow about 2mm a week. The hair on the right side of my head is starting to grow in pretty well. And the top of my head some thick hair is growing in very sparsely. The hairs are thick, but very spread out. They grow very slowly… about .25mm per week. So, it’s kind of a patchwork that looks odd. I shave the sides and back daily. Some days I slack off, but then it is a rougher shave the next day. I try to shave the top only once a week. Shaving it more often makes little pimples appear. The scar is healing up pretty well. The skin is smoothing nicely and I can even feel the titanium discs that they used to reattach the cut out bone to my skull. Cool, eh?

My good buddy Anthony is here visiting from LA. I took the metro and bus up to BWI this afternoon to pick him up. I’ve known Anthony since the 5th grade. He was in our wedding back in 2003. Here is a pic of Anthony (and Cassie too!) And here are the rest of the pics in the album. I have to work tomorrow in the morning. After that we’re going to hang out and maybe see some sights if it is not too hot.

Speaking of hot… it has been very hot here! The temp hit 101 here today, with heat indices in the area over 110. The past three days have been getting progressively warmer. Today was the worst, but there is a front coming in tomorrow and it should be in the low 90’s tomorrow and high 80’s Saturday. We saw some lightning tonight, so we know it’s on the way. Come on slightly cooler weather!!