Negative

Well, I started my cycle this morning and took a pregnancy test this afternoon in the event Dr. K asked me if I took one I could tell him I did. And it was negative. I had a feeling Tuesday night I would start today but of course I was hoping I would not. But, it is what it is and yes, I am disappointed. I called Dr. K's office to let them know. He mentioned trying one more time and I needed to let him know as soon as possible since he had me start Femara on Day 5 which would be Monday. He's out of town and will see the note first thing Monday morning with enough time to call in a prescription of Femara and I can start it that night. I am starting to change my mind a little about the laparoscopy if we don't get pregnant this next try. My first concern is doing something outside of God's will and wasting our time getting to God's will, but I also feel like I have only tried one time and if I don't try again or have the surgery I won't be giving it my all. I'd be quitting too easy, like I haven't really tried. I worry too much sometimes. We will continue to pray about it and we'll let you know here on the blog what happens next. Thank you to everyone for your prayers, thoughts and concern for us. We really appreciate it.

~Holly

Fifteen Days

Well, on Day 15 the IUI was performed. I picked up this huge box from the cryobank which contained the canister and carried it to Dr. K's office. Roger came about ten minutes after they told me they were starting the thawing process. It didn't take long and we were moved into an exam room. I got ready and on the table. I was a little nervous and Roger could see that in my face. He told me we could run out of there if we wanted but I just laughed as I took more deep breaths out. Dr. K came in with a nurse to assist him and we started the process. It was pretty much painless except for one sharp pain similar to the pain I felt from the HSG procedure which told me he was in my uterus. It was over before we knew it then he elevated my bottom half and told me to lay there for about ten minutes. He wrote some notes in my file then Roger started with the barrage of questions. I couldn't think of any questions just yet but Roger covered it all. And Dr. K again was more than happy to answer Roger's questions. He even pulled out a binder with diagrams and was showing us the procedure compared to natural conception. It was very educational. This is also when we asked him about what to do next. He told us to test at home in fifteen days. If we tested earlier it would most likely indicate positive because the HCG shot I was given the day before to release the egg remains in the system and could give a false positive on home pregnancy tests which tests for HCG. When Dr. K was done and left the room, Roger prayed over me and for us. His nurse came in a few minutes later to tell us I could get dressed and leave. It was a little strange of an experience but it should be since we were trying to conceive in a doctor's exam room and not in the privacy of our home. Plus it wasn't as fun as trying to conceive in the privacy of your own home. :) So we are waiting fifteen days to test which will be Saturday, January 1st. What a way to start the new year!

The very next day, Roger had his first seizure in 3.5 years. When he started the clinical trial at MD Anderson he had to switch one of his anti-seizure medications because it increases liver enzymes. And increased liver enzymes affect chemotherapy so they would have to increase his chemo on the trial and they don't want to have to do that. So they switched it to a different anti-seizure med and have been keeping track of it in his system with his bi-weekly blood tests. But the levels in his blood have always been under where they would like to see them but he had not had a reason yet to increase the meds so they left them where they were. But good ole Dr. Conrad Roger's oncologist also prescribed him Ativan to keep on his person at all times in the event he started to have a seizure. So as soon as we figured out it was a seizure and not a toe cramp, he grabbed his Ativan pill on the night stand and put it under his tongue as he laid down on the bed while the seizure was working it's way up his right side. It lasted one minute longer and made it up to his lower back then stopped completely. That was pretty freaky. So it was only a partial seizure thank goodness. He felt loopy the rest of the day and sat a lot as his right leg was exhausted from the seizure. He left messages with his team at MD Anderson and on Monday they increased his Depakote and felt like that was really all he needed. They will continue to monitor the levels in his blood. But this answers one question we have had for a while. Roger will probably have to be on anti-seizure medications forever.

Since the IUI I have been asked the same questions from people, "Do you feel pregnant? Do you feel different? Have you tested yet? When can you test?" At first I did not feel any different. Plus I didn't know what being pregnant felt like so I couldn't answer that one. But as I got asked over and over again I started to think more about, "Do I feel different?" That's when I started noticing small things. Then I remembered the counsel of a very wise girlfriend who gave me some great advice this summer when we had a few months to try naturally. She told me to be aware of my mind playing tricks on me and even making me think I am feeling or imagining pregnancy symptoms, that way I am not super disappointed when I am not pregnant. I completely understood her advice then because I have experienced my brain making me think I am feeling things when I am not or I am imagining things that are not. My lower back has been hurting. But I started working on my core again a couple weeks before so that could be from all the crunches and push ups I had been doing. It could also be lower back pain from starting my cycle soon. I have been really tired lately. But that could be from us staying up too late and just being lazy during the Christmas break. We drove up to Roger's family's Christmas celebration and as soon as I got in the truck I started to feel sleepy even though I had only been awake for a couple hours. But I start to get sleepy every time I get in a vehicle for short and long drives for ever... Nothing new here. I have had some small weird feelings on one side of my pelvis. I don't know how to explain those but again, my mind could be playing tricks on me.

If my home pregnancy test is positive, I make an appointment for a blood test at Dr. K's office. If their blood test is positive they will test again in a few days to watch the numbers to make sure it is not an ectopic (tubal) pregnancy since there is a slight kink in my right fallopian tube. Once we get past this, I will then return to my ob/mid-wife practice. If my home pregnancy test is negative or I start my cycle, I also make an appointment to return to Dr. K's office to discuss the next step. So we'll test this Saturday and of course, you'll know here on the blog. And now you know how to pray for us. Thanks everyone and hope you all had a very Merry Christmas!

~ Holly

Day Fourteen

Okay peeps, I'm going to get down and dirty with this. Had a long day and want to get to bed asap. Today was day fourteen. I took the Femara last week and had no side effects. Yeah! This past week I started to feel a little bit of lower back pain. Last night lower abdominal pain on the right side started. I had the ultrasound this afternoon. After an hour wait, I finally went back. Dr. K reviewed my HSG procedure films real quick with me and told me he wanted to try 3-4 IUI's and if I didn't get pregnant then we should do a laparoscopy of the right fallopian tube since it wasn't as open as the left to see if there was any scarring. I thought, maybe.

I really wish they would have told me it was going to be an internal ultrasound. Not that it hurt, but that's not what I had envisioned. Anywho, Dr. K started but didn't like the position of my uterus. He said it was tilted. I have been told this once before by an Army nurse practitioner but I didn't give her much credit because she gave awful annual exams. Then he proceeded to move it. Didn't know that could be done. Must have worked because he continued with the ultrasound then I saw my eggs. Of course I had no idea that's what they were. So I started asking questions. If you know me well, you know I ask a lot of questions. Dr. K was cool about it. I think he enjoyed it.

So it basically looked like a sonogram (see picture to the left for an idea. no this is not mine. roger wasn't with me and if he was, he would have posted a pic on facebook!) with one big round black spot that was split in three. I asked him if that was an egg and he said, "Actually that's three." I almost freaked out. I thought to myself, "WTH?! Three!" Then he proceeded to explain to me how he measured them to figure out how mature they were. He said only two of them were mature. That was just the right side. He announced he was going to the left side. He said there were two eggs in the left ovary. Again, I thought, "OMG!" But they were really small and not anywhere near mature. Whew!

He asked me if I brought my shot with me to which I answered yes. He told me his nurse would give me the shot and I was to come back Friday at 3:00 pm with my frozen sample for the IUI. I asked him how many frozen samples I should bring with me. He said one but then asked me how many we had total. I replied nine. Then he told me we should do 2 IUI's and if I didn't get pregnant we should do the laproscopy because he didn't want to use up too many samples. It didn't dawn on me until I talked to Roger on my way home that Dr. K doesn't want to use up a lot of samples because he plans to try IVF if the IUI's don't work. But we forgot to tell him we don't want to do IVF at all. And after having the HSG procedure, I sure as heck am not looking forward to my fallopian tube being scraped out. No thank you. So Roger and I will tell him tomorrow at our appointment. If the IUI's don't work we decided we would pray about it but we don't want to do the laparoscopy or IVF.

So the nurse gave me the shot and I am so glad she did it and not Roger. He was way too eager to stick me anyway. It was not pleasant. Then I had to call the cryobank to make arrangements to pick up a sample tomorrow. As I drove away from Dr. K's office I prayed a little bit because I started to feel a little nervous maybe scared. "What the heck am I doing?" crossed my mind once. I thought to myself, "Holly, fear does not come from the Lord." and just prayed for God to give me peace and if this was His will for us to take the fear away and give me peace. Can you tell I needed peace? I must have said it forty times in my prayer. I did have to start over a few times because traffic was distracting me. I know if I would have talked to a girlfriend I probably would have started crying. And I almost called one but decided crying on the phone driving on I-35 was probably not a smart idea.

So there you have it. Rough recap. I pick up the frozen sample tomorrow at noon. Then meet Roger at Dr. K's office for the IUI at 3:00 pm. So please pray for us, for me, for the IUI, for peace and I'm going to try to not be selfish and say only one egg to be released and ask for you to pray for God's will to be done on that. But no praying specifically for multiples! Although there are two people we know who seem to think since there are some twins on Roger's mom's side of the family we have a higher chance for multiples, that's not how it works people. Roger's only contribution was sperm. The eggs are my doing. There are no twins on my mom's side of the family but since I took an ovulation stimulant that would be the only reason we would have a higher chance of multiples. Okay, enough. Thank you and good night. ~ Holly

Day One

So yesterday was Day One for me (Holly). Which means my cycle started (finally) and I had to call Dr. K's office to let them know. They called me back in the afternoon with all the instructions then had to call me back later to answer all my questions. Here's a recap:

Day - What to Do (Date)
1 - Start Cycle (Dec 3)
5-9 - Start Femara (2 pills a day every evening) (Dec 7-11)
12 - Be home between 8a-3p to sign for Ovidrel (Dec 14)
14 - Ultrasound (bring Ovidrel in case) (Dec 16)

The questions I had for them were what is Femara and Ovidrel and how would we know when the actual IUI will be performed as I need to schedule with the cryobank for pick-up plus I was going to help a friend on Dec 17th as she recovered from surgery the previous day.

Since my cycle is anywhere from 26 to 30 days now, the doctor suggested using a drug like Clomid to help ovulation become more precise since we have to do IUI to conceive and you really need to know when you are ovulating to be able to time the IUI. Well, Femara is basically the same as Clomid except better. From everything we read online, it doesn't have as many side effects as Clomid and it doesn't stay in the system as long as Clomid so it doesn't hinder conception. The next drug they mentioned was Ovidrel. The nurse had to call me back on that one but thank goodness again for the internet because by the time she called me back I had all my questions answered. In order to be able to time ovulation accurately to be able to know when to do the IUI procedure, they use Femara but the egg has to be released precisely also. That's where Ovidrel comes in. It's a shot that helps release the mature egg from the ovary.

So here's how it goes down. At the ultrasound, Dr. K will check to see if the egg is mature and ready to be released. If it is mature and ready that day, he will give me the shot there at the office. The IUI could be performed as early as the next day. If the egg is not mature and ready at the ultrasound, Dr. K will tell me when to inject the shot myself at home and then the IUI will be performed. Yes, this means I will have to give myself a shot or Roger has volunteered to give it to me. The online pharmacy that is mailing the Ovidrel shot to us has videos to learn how to inject the shot. We watched it and it seems easy. Then we got nosey and watched a few other videos for other fertility medications and almost scared ourselves.

I didn't know I had signed up for all of this, but it's what we have to do to get pregnant while Roger is on the clinical trial. Fun, fun! ~ Holly

Step Two Down, On To Step Three

Well, the HSG procedure is complete. It was not pleasant at all. I was actually shocked at how much it hurt. But as soon as it was over the pain ended. They let Roger stay in the whole time. Dr. K said it's the first time in ten years he has let a husband stay in because he usually doesn't like them to see how much pain their wife is in. But Roger told him I have always been there for all his stuff and he wanted to be here with me. Dr. K told us during the procedure that everything looked good to him. The left fallopian tube was completely open and the right was not as open as the left but it should not hinder conception. So we're on to the next step which is the first day of my next cycle I have to call their office to inform them and they will set up a flow chart then make an appointment for me to come in and get the Clomid instructions and get ready to do the IUI. We will also be working with the cryobank to transport the frozen samples to Dr. K's office on the days of the IUI procedure. All this could happen as early as the end of next week but of course we won't know until it happens as my cycle is still not predictable. But of course we'll update the blog when we know something more definite.

Roger's blood work last week showed his white blood count went back up so he can continue on the clinical trial. We know him working 70+ hours a week for 19 days straight was not good for him. He is working towards getting more rest, eating healthier and taking better care of himself and we'll post about that in a few weeks. But the extreme overtime ended and he was able to get rest and is back to normal. We go to MD Anderson in Houston on Monday and Tuesday next week for his next MRI, echo-cardiogram and labs. We are excited about this next MRI as the last one two months ago showed no new growth. We are eager to hear what this one shows.

So please pray for what both of us are going through all at the same time. We hope and pray for everyone to have an amazing Thanksgiving. Of course, I'm hoping Texas A&M beats the hell out of the University of Texas. But Roger is hoping for the opposite. A house divided, only for four or so hours on Thanksgiving day during the football game. ~ Holly

Step Two

Step one for us getting pregnant while Roger is on the clinical trial drugs happened last Thursday. It was giving blood for a whole mess of tests. See the blog post Here We Go for more details on the blood tests. I even forgot one of the tests, Vitamin D, in that long list of blood tests. But I will be getting the results of the blood work tomorrow before my appointment.

The next step is an HSG procedure which will take place tomorrow, Thursday, November 11th, at 1:30 pm. Roger is going to go with me which I appreciate. I have been doing some research on the HSG procedure by reading websites and forums and watching YouTube videos. Most of these people make it sound super awful and painful, but again, I think there are some over exaggerators and drama queens out there. Just like with the mammogram, people kept telling me how much it hurt and how painful it was and it wasn't painful at all to me. I don't have any issues with annual exams either. So I'm hoping for the same with the HSG procedure.

I will admit I am very interested in the results for both the blood work and the HSG. I have been seeing a holistic chiropractor for a couple months working initially on allergies which I don't have right now and now getting off my ulcerative colitis medications. He has found a few other symptoms that show possible adrenal and thyroid issues. So we're working on that naturally and it will be interesting to see what those blood tests show. I am also interested in the HSG because the x-rays will be seen right there during the procedure and I will be able to see my own uterus and fallopian tubes and if there are any abnormalities. Yes, I know, I'm strange. But I have never been pregnant so I don't know what state all those are in for me. I am getting closer and closer to 40 years old so no telling what's going on in there.

So that's the latest with conception. I'll try to get Roger to post a blog about his current brain cancer clinical trial happenings. Although not much has changed since our last update. If you could pray for what we are going through tomorrow we would really appreciate it. And you know we'll let you know how it goes here on the blog. Thanks-Holly.

Serving Orphans

This past Sunday, November 7th was Orphan Sunday. It's an initiative to bring awareness to orphans, foster care, adoption and raise up people and organizations to stand in the gap for orphans and the families and organizations that support them. Our church, Austin New Church (ANC), has many families adopting this year and just recently supported two organizations that help orphans.

On October 23rd, a team of friends and family from our church called Restore the Orphan ran in the Chosen: Marathon for Adoption. I (Holly) personally ran the half marathon. It was very hard, but a lot of fun. I don't think I'll be running a half marathon again. You can see pictures of me running here and you can do a search for the last name of anyone you know who was running and see their pictures also. And you can see the elevation of the run from my RunKeeper activity but it didn't capture all of the run as I lost GPS signal at 10.19 miles. We had several fund-raising events leading up to the marathon for our own ABBA fund at church for the families adopting. Proceeds from the event will go directly to families adopting in our area and from our church.

October 31st was the fifth Sunday of the month so ANC always does church on those days in our community and city by serving at several different projects called Serve Austin Sunday. This month we held four garage sales all over Austin to raise money for Help End Local Poverty (HELP). Roger and I worked a huge garage sale of four Restore Communities (community groups) from our church and it was a great success. Long and exhausting but so worth it because we sold $3,572 worth of excess stuff we all had in our homes. All four garage sales together donated almost $11,000 to HELP. And with this donation they were able to complete the funding for their orphanage in Port-au-Prince, Haiti and complete the funding to dig a water well at their orphanage in Marondera, Zimbabwe. HELP sent a delegation to Haiti this past week and you can follow them on their visit at their blog.

Our next big event, Restore the Innocent, ANC & Restore Austin are partnering with HELP, Music for the City and Austin Angels to bring awareness to the injustice of sex-trafficking. It will be held on December 7th at 6:30 pm at the Blanton Museum of Art. We will be showing the film Call & Response then heading to an after party hosted by Music for the City to discuss the next steps for fighting this crisis. 100% of all proceeds will go to fighting human trafficking. So, join us in raising awareness and engaging the fight!

Here We Go...

I got the referral two days after the last call I made to Tricare. That was a pleasant surprise. I called to make the appointment and they directed me to their website to download a questionnaire. It was six pages of medical history with a menstrual and reproductive emphasis. Thank goodness for the FMC iPhone app. Yes, there's an app for everything. It really comes in handy when I get asked all those questions. I don't have to calculate anything. Just enter the data and the app does it. You can save all kinds of data when it comes to the female reproductive system.

Roger and I went to meet the fertility doctor on Friday. It was just a new patient consultation which took about 30-45 minutes. Dr. K.M. Kavoussi was really nice. He definitely knows his stuff, but he does this every day. He reviewed my forms before he saw us and got straight to business. He asked a few specific questions then let us know how he starts the process. On the first day of my next cycle I have to call the office to schedule an HSG for 5-6 days later. He did say I would need to take four ibuprofen one hour before the procedure because it would cause cramping. Something to look forward to. Then on the second day I have to go get blood drawn for a bunch of lab tests. He wants to check my metabolic panel, lipid panel, CBC, estradiol, FSH (follicle stimulating hormone) and TSH (thyroid stimulating hormone) levels. The HSG and the lab results will tell him if I will need any assistance getting pregnant. If those are normal, then we can go through with just an IUI.

But since my cycle is currently 24-28 days in length, ovulation can not accurately be predicted so he suggests using Clomid which is an ovulation stimulant. That used to scare the heck out of me because 1) I don't like to take any drugs unless medically necessary especially fertility drugs because 2) I am not keen on the idea of having multiples. Although if we tried naturally and multiples occurred I would be okay with it because it was obviously meant to be but I wouldn't want to try for multiples. Again, if that happened I'd have to be okay with it, but one baby is scary enough for me I can't imagine multiples. If you read the link to Clomid above, in the clinical trial the rates of multiples were 7.98%: 6.9% twin, 0.5% triplet, 0.3% quadruplet, and 0.1% quintuplet. I know quite a few women who have used Clomid and conceived on the first or second attempt most of those being natural conception. Clomid is a pill taken once a day for five days so ovulation can be precisely timed in order to perform the IUI.

Dr. Kavoussi suggested only trying IUI 3-4 times, which is all we think we would want to do anyway, before going to IVF since we have nine vials frozen at the cryobank. Of course right now we don't think we want to go through with IVF. But we'll address that if we need to. Since we were so unaware of the process ourselves, we thought we would share it here so others can learn. Not a lot of people share their fertility issues so I had no idea what the process entailed. We live our lives like an open book so others may be helped by our experiences. So the next update on this will be after the first week of November. And all prayers are greatly appreciated. We are excited to go on this adventure. Here we go...

Referral Take Two

Well, I spoke with Tricare today and turns out there are several in-network fertility specialists in Austin including the doctor I requested the first time. The person I spoke with said she is not sure why the last person I spoke with told me otherwise. I am not surprised by this at all. It comes with the territory. I would not expect any less from Tricare actually. At least she was really nice and we had a few good laughs together about it. So another referral will be sent to me in a week. We'll see who I get this time. I wonder if it will be for the doctor I requested or someone different. I'll let you know here. ~ Holly

Stable!

The results from my blood work, echocardiogram and MRI on Monday are in. We met with the research nurse, nurse practitioner and Dr. Conrad this morning and all the tests look good. Dr. Conrad says that the MRI did not show much growth of the tumor this time as we've been seeing in the past few months. He said it looks a little plump in areas, and that my head was in a slightly different angle (which is the case for every scan), but this scan was overall stable. I have had minimal side effects and they seem to be pleased thus far. I will continue on the study for two more months and will come back to MD Anderson in eight weeks, which puts our next visit in early December. Between now and then I will have blood tests every two weeks in Austin so that MDACC can make sure my blood counts are safe.

I'm typing this up on my phone while we are waiting for my $10,000 chemo drugs. It's been an hour and we are getting hungry! But as soon as we get the meds we'll be back on the road to Austin and can finally get some lunch. Thanks again for thinking of us, praying for us and supporting us.

-Roger

First Referral & Another Prayer Request

So we received our first referral in the mail today from Tricare for a fertility doctor. Funny thing is, Roger googled his name and he retired earlier this year and is no longer practicing. I called the phone number listed and it rang until it cut off. So I get to call our insurance again tomorrow to ask them for a referral to a fertility doctor that is actually still practicing. ~ Holly

Also, we are asking for prayers for our dear friends Eric & Brea who are at MD Anderson Cancer Center this week themselves. You can read their blog at "Giving Cancer the Finger". Okay, that's not the name of their blog but we like that title better. Thanks!

Conception & Clinical Trial Update

No, we're not pregnant. But we wanted to update everyone on the latest in this department so you know how to pray for us. And we'll give a quick little update on Roger's clinical trial so you can pray for that also.

Now that Roger has started and been on the clinical trial for almost two months, we are not allowed to conceive naturally. One of the clinical trial drugs causes birth defects as it alters genes, DNA, yadda, yadda. And yes, I'm going to share this because I keep getting asked, the only form of birth control that is clinical trial approved are condoms because obviously I have to be off birth control pills in order to get pregnant and they don't want us to take any chances of getting pregnant. Now that we cannot conceive naturally, the next option is artificial insemination. I visited my the ob-gyn/midwife practice we use and although they are interested in starting to do this procedure in their office, I decided I did not want to be their first since they will not be doing any testing of reproductive capabilities and just doing the insemination. Since I have never been pregnant I do not know if I can get pregnant and I'd like to have that checked before we start using up the nine chances we have saved at the cryobank. Now we have to get referred to a fertility center and we found out last week none of the fertility centers in Austin accept our insurance. After an interesting phone conversation with our insurance, their solution is for our primary care manager (PCM) to refer us to a fertility center here in Austin anyway. The insurance will deny it then they have to find us a fertility center that accepts our insurance. I don't know how long that will take or if it's going to be that easy, but you know we will keep you informed here on the blog. We are asking for prayer for the wait and for God's direction through all of this process. We definitely don't want to do what we want but to do His will so we do what's best for His kingdom and His glory. If we are not meant to have children of our own and we are supposed to foster or adopt, that's what we want to do. And we'll definitely need clear direction for how far to go in this process and when we should stop. So please pray for us to go to God in every part of the process and listen to Him and to be have peace and joy with what He wants us to do.

As for Roger, he is almost done with the second cycle of the clinical trial (each cycle is 28 days). His first MRI, echo-cardiogram and blood tests at MD Anderson will be next Monday, October 4th. He will follow-up with his oncologist and the rest of the clinical trial gang on Tuesday. This meeting will most likely not be the decision making meeting to continue the trial. That will most likely be done at the end of the fourth cycle with the second MRI in December. Of course we'll keep everyone updated here on the blog.

So now you know what's going on with us and how to pray for us. We really appreciate the prayers. Thanks!

-Holly

Sewing Projects-One Hour Dress

So I have been on a sewing kick lately. I was introduced to a blog recently that had a list of free online patterns and I found a few I wanted to try out. I decided to start with this One Hour Dress pattern. It was really neat to try and I learned a lot by experimenting. This was my first time to sew with knit fabric. And as a result I definitely know why I always avoided knits. It definitely took me more than one hour to make it. Even a few of the commenters said it took them about two hours. I even made the cheetah print belt to go with it. I have been wanting a cheetah print belt for a while to jazz up simple dresses but couldn't find one at all. So I decided to make it. Of course, as always, I used coupons from Jo-Ann's to purchase the fabric for the dress and belt. I love coupons.

I also created a simple craft this week called a t-shirt necklace. A friend told me about it and I was intrigued enough to Google it and try it. It was a lot of fun, super easy to make and looked really cool with the outfit I wore. I am hoping to start another dress this week to go along with a dress I made last week and I'll blog about it when I'm done. I have a few other sewing projects lined up which should keep me busy for a while.

Serve Austin Sunday

Well our last Austin New Church Serve Austin Sunday project held on August 29th was a huge success! You can see pictures from the Communities in Schools Extreme Classroom Makeover by clicking on the image to the left. It was so cool to make over a room that would help kids feel more comfortable talking with the CIS counselors and enable CIS to better serve these kids and their families. Great job everyone!

Our next Serve Austin Sunday will be huge! We are hosting a HELP garage sale party on the morning of October 31st at the school where our church meets. All proceeds will go to HELP which is dedicated to ending extreme poverty by rescuing orphans, restoring their hope and renewing their communities.

So would you please look through your homes, garages and sheds for items you would like to donate to our garage sale party! We will be collecting donated items so you can bring them to us or if we can, we will get them from you. If you would like to volunteer at the garage sale or donate baked goods or breakfast tacos, please let us know.Thanks!!

One Month Clinical Trial Check-up

From Holly: As we drove into Houston, I saw all the buildings flying past us and I just got this overwhelming feeling because of what we were doing there and why we were going there. And I just stopped reading to talk with God to myself asking him to help me not worry about today or tomorrow and just live every day, day by day and asking him to help me be the best wife I can be, patient & understanding & there for roger as much as I can. I had a few tears which made my nose run and I used all the napkins we had in the glove box. Le sigh.

From Roger: Wow, Holly is making me follow up her post with mine. No tears, sorry. Yes, so we had our one month follow-up. This was basically to see if my blood cell counts are okay and if so, to increase the chemo dosage. They didn't increase it a whole lot, but this may mean more stoppage while on the chemo and more fatigue. I snapped a picture of my daily regimen for you to admire. The first set of pills on the left are called Lapatinib. Each one of those orange monstrosities are 250mg of signal inhibiting goodness. This is the experimental drug that they have been using again breast cancer and certain types of melanomas. It has been promising for my tumor. I can't eat anything for two hours before I take these and for one hour afterward, so I just get up in the morning and take these first thing and don't eat anything for an hour. My experience so far with these has been okay. These leave me a little loose and I end up having diarrhea a few times a week. Other than that, they're not bad so far. The next row over are my daily 10am pills. Starting from the top is Depakote ER, then two Keppras, both anti-seizure drugs. Below that an allergy pill, kinda like Sudafed-D, but free (thank you taxpayers!) And lastly a multi-vitamin. I've been looking into taking better multivitamins and supplements from USANA, but more on that in another post. The next row to the right are my nightly 10pm pills - same anti-seizure pills that I take in the morning. And last but not least, the chemotherapy pills, Temodar. Everything else but these I take every day. One cycle of therapy is 28 days. I take the Temodar on days 1-7 and 15-21. I have to take them at night but only two hours after eating and then nothing afterward for one hour. In addition, I also take an anti-nausea pill called Zofran (the litttle pill to the left of the Temodar capsules) thirty minutes before I take the Temodar. I have not really had any issues with the Temodar yet except for constipation, but I have been able to combat that with a stool softener, like Colace. They warned me today that with the increased dosage I might be more constipated and might feel more nausea, but we'll see. I'm glad I got the constipation thing pretty much figured out with the Colace, because that was a rough first week.. I mean, have you ever pooped rocks before? It hurts... trust me.

Sitting in the waiting room at the pharmacy was boring as usual today... annoying people with their cell phone ringers going off all loud, phone conversations going on, being called to the desk only to be told to keep waiting because the insurance wasn't finalized yet. One thing caught my attention that I kept hearing though was the pharmacy clerk tell patients what their co-pays were for their meds... $40, $60, $100.. then I look at mine. $9 for 28 days of pills per prescription. Did you hear me? NINE! And that's at a pharmacy!! If I go through the mail order pharmacy it is only $3. The whole picture does not come into focus until you look at the bill for the drugs I picked up today. The Lapatinib is a trial drug, so it is provided to me for free. But the Temodar is not. The total cost for two bottles was $12,300.60. Wait!! What?? Yeah. So, as you may or may not know, the US Army Medically Retired me, so I have Tricare for insurance and the government foots most of the bill. Now, they never pay full price. It looks like they are only paying $8397.60. I am paying $18.00 Why am I sharing this? Because I want to thank you. I want to thank you for not only paying your taxes, but for supporting those that are still serving and those of us that served. It is because of you that I have this chance at life. I was pleased to hear that last week Operation Iraqi Freedom was finally ended. Most of our soldiers there are now in a support role. I met a lot of guys that were injured in Iraq when I was at Walter Reed in Washington, DC and I'm glad that very few, if any, will have to suffer through hell there again. I'm not saying that I didn't support the purpose of going there, but there were some things that the leaders above didn't do right. They failed the men and women on the ground in many ways and I'm glad that they are taking care of the ones that need it. I have no idea where I am going with this, so I'll just end it here. Thanks again to everyone for your prayers and thoughts. We love you and will continue to update you.

-Roger

Approved! and Greetings RFL-ings

I had to send an email to my entire office today. Not to tell them that I had cancer, but to tell them that there is a stupid freaking tumor about the size of a quarter expanding in my brain pushing brain matter out of its greedy way and increasing the risk of seizure. I felt like it was time to let people know what is going on and to let them know how to help me if I do have an episode. That also let me include a shameless plug to the blog… so for all of you RFLers… Welcome! You have no idea how much I love you guys, love my job, love what you do, and love serving you every day. You change people’s lives and it makes a bad day at work okay knowing that you guys make many bad days much better for a lot of people out there. Thank you.

Okay, so enough of that. I found out yesterday that I am approved physically, medically and insurance-ically for the trial. I got a call from a case manager at the insurance company who also told me that I should be eligible for travel reimbursement now. That means they will pay for gas, all meals, parking and hotel for our trips to Houston. I called the travel people and they said the same thing and emailed me all the paperwork. I also got a call from MD Anderson and they finally said that they can give me the meds. I had some flexibility on the date to get them so I actually asked my boss which day would be best and we both agreed Tuesday would be a better day. I have missed key meetings on Mondays for five weeks in a row and have not worked a full five day work week in eight out of nine weeks due to travel, and this week will be another. I only get so much time off and have been working extra hours to make up time so that I don’t have to use so many days. Right now I am planning on driving to Houston and back on Tuesday. We’ll have Holly’s niece Elizabeth and nephew Cole with us this week, so I’m going to have to drive by myself since [two 6-7 year olds] + [6-7 hours on the road] = murder. I’ve been trying to find someone to go with me, but no luck so far. Any takers?

Wednesday will be my first day on the trial. The nurse said I will definitely need some anti-nausea medication and they are going to give it to me. I am not looking forward to it, but am ready to get started. There’s a lot I want to share about the past few weeks but I’ll have to save that for another post since it’s so late. By the way, if you use some type of news or feed reader, you can follow the blog by clicking the links at the right of the webpage or you can scroll to the bottom of the page and sign up for it to be emailed to you whenever we post an update. It’s free and your email address won’t be sold or anything. Stay tuned as we embark on this journey… it should be… um… interesting. And barfy.

-Roger

Eligible for the Clinical Trial

Holly and I spent two days at MD Anderson and after a battery of tests yesterday we now know that I am healthy enough and eligible for the clinical trial. Only issue is, the insurance would not approve it until after I was approved. So now the good people at MDACC are waiting for Tricare/Humana to approve and then once they do we'll have to drive BACK to Houston to sign more paperwork, get the instructions and the meds. We'll have more information about the tests and all (they were pretty cool!) but I just wanted to get this out for now. I'll let you know when we get the final approval. I think the earliest we'll be able to get back to Houston at this point is Monday. Love you all! Thanks for the prayers and keep on praying!!

-Roger

Aaaaand.. we're BACK!

This is a test.. are you there? We've had a few issues with the blog and we think we have gotten them all fixed now. Did you miss us? Oh.. there is so much to share.

Clinical Trial Risks & Side Effects

Okay, part of this is so T.M.I., but we need prayer people. So you have been warned.

Roger received a sixteen page document last Friday from MD Anderson regarding the clinical trial. It consisted of the informed consent and authorization to be a participant in research, a description of the research, a description of the study, potential benefits, alternative procedures or treatment and all the signature pages. Seven of the sixteen pages just covered the risks, side effects and discomforts to the participant of the clinical trial. Roger told me about one particular risk when he got home Friday which threw me for a loop for a bit. Then I sat down and actually read through the whole document. As I was reading through the pages and pages of risks and side effects and stating them out loud as I came across really “interesting” ones, I actually said to Roger, “Have you read this? And how do you feel about all of these?” There were definitely some scary ones.

But one threw us off the most. It was the risk Roger told me about when he got home from work. I kind of went off the deep end for a little bit. You see Roger and I have been praying since last year, okay, me more than Roger, about me getting on board with having a baby. Roger has been more ready than me since he had his first craniotomy in 2006. After he went through paralysis, living in a rehabilitation hospital to learn to walk and function normally again then 30 days of radiation, he told me he thought he wanted to have a kid and did not want to miss out on that experience. We had always felt like God had used us for many things and when it came to having children if God wanted to use us that way he would make it happen and we were fine with that. We both had not felt the passion yet to have children so we both agreed if we had kids we did and if we didn’t have kids we didn’t. No biggie until he shared this with me. So I told him at the time, “When you are really ready, let me know.” A few years pass and we are both finally back in Texas and decide to build a house. One month after moving in, Roger looks over at me and says he thinks he’s really ready now. And the praying began for me to get on board with that. Obviously more praying by me of course. I read a couple pregnancy/childbirth books last summer. And this past February we met with a midwife. That’s when I felt a tiny bit excited about the process. And since then have been praying for God’s direction on timing, etc. We thought we had a plan of me getting off birth control in June, watching for signs of ovulation for a month to make sure my body was all ready to go and begin the trying in August. Then at the end of February we found out about the questionable MRI results. We began to pray about and deal with that and also asked God to direct our plans for pregnancy. We didn’t know what we should do: go with our plan, start right away or put it all on hold. There were so many factors of Roger’s yet unknown treatment affecting what we should do. Was it tumor growing back and would he have surgery and be paralyzed permanently or worse coma or death? Would he have to have radiation or chemotherapy after surgery or in place of surgery that could affect his fertility? Or was it radiation necrosis and what the heck do you do with that? These are the wonderful things you get to think about and discuss with your spouse when you have cancer. Twice.

We knew we couldn’t make any decisions until after we went to MD Anderson. After we met with the neurosurgeon at MD Anderson in May, we thought our only option was surgery and we still couldn’t make a decision until we met with the neuro-oncologist. The Thursday before we were scheduled to meet him, we were hosting our weekly neighborhood dinner at our house. Roger and I were standing in the kitchen prepping for grilling pizzas with 10-12 of our favorite people, talking about anything and everything. And Roger says to me, “Why are we waiting? Why don’t we just start trying now?” So I said okay. I was already at the end of my birth control packet and would just not start the next one. The following Tuesday we meet with his neuro-oncologist who gives us three more possible options before surgery. So we think great, we have time. Thank goodness we started now. I specifically asked him will the drugs in the clinical trials affect Roger’s fertility and he says basically it could and we should look into banking some sperm. We had already discussed this option but were thinking we had plenty of time and could even keep trying while he was doing the clinical trial. Roger took the blood tests required for it the week before we went to see the neuro-oncologist just so that part of it was done.

Then Friday we get this sixteen page document and it clearly states at the end of the risks, side effects and discomforts paragraphs in its own little section that not only should he not father a child while on the study but he should not father a child for six months after the last dose of the study drugs and must use birth control. If his tumor responds to the study drugs he could be on the study for up to two years. What? I just got on board with having a baby and this happens?! The acceptable forms of birth control are birth control pills and/or condoms. Great, I just got off birth control pills. And if your partner becomes pregnant you must tell the doctors right away. Nice. There goes our chance of trying while he’s on the study and gives us about a month and a half at the most to try to get pregnant naturally. If we don’t conceive before he starts the study, he’s got to bank some sperm and then we can start the process of conceiving via artificial insemination or invitro fertilization. Two things I never thought I would have to do. Neither fun nor cheap. At this point I’m thinking I have to get pregnant before he starts the study because I don’t want to take the chance of getting pregnant while he’s on it for fear of what it would do to the baby. So for Roger’s sake, we better get pregnant before because I don’t think I want to have sex while he’s on the study if I’m not already pregnant. Poor Roger. So we are asking for prayer for us to conceive before he starts the study, for protection from all the risks, side effects and discomforts, for peace and strength to continue to make it through this, and that we seek God and glorify Him in everything.

Thank you, Holly.

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

Another Visit to MD Anderson

I'm late posting this, but Holly and I are off to Houston to another round of appointments Tuesday and Wednesday. We slept in late today since it's a holiday and ran some errands. Also hung a new light fixture over our dining table; Holly loves it! After we pack up some stuff we'll head out.

First thing Tue morning I have some labs, an MRI and a visit with a Neuro-Oncologist. I'm not sure what to expect during his visit so we'll keep you posted. Then Wed afternoon we meet with my Neurosurgeon again to make a final decision about the surgery. We'll let you know as soon as we can.

We hope you have enjoyed this Memorial Day weekend. We mourn those that gave the ultimate sacrifice protecting the freedoms we have that many in this country take for granted. For me and Holly, these holidays always have special meaning as they were our brothers and sisters in arms. But we also salute those that have served or are still serving. Thank you for your dedication.

Serve Austin Sunday (May 30th)

Austin New Church and Restore Austin’s next Serve Austin Sunday is right around the corner – May 30th. For those who are not familiar with Serve Austin Sunday, it is a Sunday in which several churches cancel their normally scheduled worship services in order to collectively serve this great city – Austin! Some of the projects we will be doing are as follows:

• DownTown Grill Out: At the corner of 7th and Neches we will be feeding over 300 of the Austin homeless population with grilled hamburgers, chips, and sodas from 4-6pm. If you have extra summer clothes, bring them with you so we can help our homeless brothers and sisters stay cool this summer. (4-6pm)
• Restore the ArtHouse: Join us as we continue our renovation project on the ArtHouse building so we can better serve the poor and marginalized of East Austin. (1-3pm) .
• Extreme MakeOver: We will be teaming up with Communities in Schools to create a conducive learning environment for Blackshear Elementary. We are still in need of the following: click HERE.
• Restore Jackies: Join us as we partner with Jackie’s Fine Arts School as we continue to beautify the campus and facility for the children that Jackie serve (10am-12:30pm).
• BlackLand Community Development: We will be partnering with BlackLand Community development once again to help renovate and restore low cost housing for the poor who are seeking to make a change in their life.
• Youth Restore: ANC’s Youth is partnering with Mobile Loaves & Fishes to prepare food for and then feed the homeless.

Cancer Update: Next Steps

First of all, thanks again to everyone. Thank you for the cards, calls, texts, Facebook comments… it is amazing to me how quickly and efficiently we can get the word out about what is going on in the moment compared to four years ago. The first time we went through this we had the blog and that was it. The closest thing we had to an instant update was the ability for Holly to create an audio post that could be listened to on the blog immediately after it was posted. We don’t have the ability to do that anymore but now we have the ability to post quick text/picture updates from our phones to Twitter, Facebook or the blog. And the blog instantly posts a link to Twitter and then to Facebook… Amazing.

Even if you don’t have a Facebook account, you can still see our short Twitter updates for free on Twitter; just see the links on the right of the blog website. And just like we setup four years ago, you can still be emailed when a new blog is posted (scroll down to the bottom of the blog website to sign up.) Only problem with that is it is not very fast, the free version we have for that has its own schedule. But it is there if you need it. Any way you choose to keep updated, thank you for reading and checking in.

So, what is next? Well, quite a bit. This a long post but it’ll go quick, I promise. Let me start by telling you about our visit to MD Anderson Cancer Center (MDACC) on Wed, 4/26/10. We drove up Tues night and stayed with Holly’s battle buddy from Army Advanced Individual Training, Tina, and her husband Kyle and two kiddos Kyle Jr and Evan. They had not seen each other in 14 years! It was nice for them to visit and get a chance to catch up. They truly made our evening relaxing and Tina even made us breakfast at 5:30 in the morning. Thank you Tina! We headed south to the hospital at 6am and got there around 6:45am. When we got there we were a bit overwhelmed by the size of the place. This place is huge. Just southwest of downtown Houston, it is nestled in the middle of the Texas Medical Center that consists of 49 institutions including 13 Hospitals. We found our garage, figured out how we were supposed to pay and made it to the Brain and Spine Center on the 7th floor before they seemed to be open. They called us back a little after 7am, did some paperwork and paid our co-pay then sat and waited for vitals to be taken. After vitals were recorded we sat for a bit again and then were taken by our nurse, Stacy Flach (BSN, RN, OCN, Ambulatory Care Nurse), to an exam room. After another short wait the door opened and in marched our Nurse Practitioner, Cheryl Martin (RN, MS, FNP-C, Advanced Practical Nurse), Resident doctor (poor student) and our Neurosurgeon, Dr. Frederick F. Lang (M.D., F.A.C.S., Professor and Director of Clinical Research at MDACC). These people are going to save my life.

A few weeks ago I sent copies of my MRI CDs from three different military hospitals to them to look at. Dr. Lang brought up the images from those CDs on his computer… they were able to import those images and they were now part of my electronic medical record. I thought that was pretty high tech, even for me, an IT guy! So these are the key points that we discussed:

• Looking at the MRIs there is a change from the MRI taken in July 2009 to the one I had in Feb 2010; the mass is approximately .7mm larger from front to back
• The mass could be radiation necrosis (dead brain tissue from radiation therapy in 2006) or the tumor growing back
• There is a blood vessel passing right through or over the area of concern that might still have had some tumor cells left on it after the first surgery and it could have grown back from that
• Four years ago, the tumor was diagnosed as a grade 2 ependymoma, and those can come back more aggressive
• The surgeon’s first opinion is to take whatever it is out, but the risks this time are greater than the first; going back in a second time has a higher risk of infection, coma, permanent right side paralysis and possible damage to my speech center in the brain
• It is also best to remove the blood vessel because tumor cells may still remain on it and the tumor could just grow back again, but removal of the blood vessel means that whatever it feeds in the brain will die (They don’t know what it feeds yet)
• Another option would be to use the Gamma Knife (targeted high dose radiation therapy) but they need to know if the tumor is a grade 2 or 3 or radiation necrosis and that cannot be determined unless they remove the tumor (Yes this is a catch 22)

So now what happens?

• MDACC wants to study the tissue that was removed from my brain in 2006 because they want to make their own diagnosis of the tumor pathology; I have already contacted the two institutions in the DC area (NNMC-The Naval National Medical Center in Bethesda, MD where my first surgery was performed, and AFIP-The Armed Forced Institute of Pathology, the institute that provided the pathology report in 2006) that have my tissue samples and requested slides be sent to MDACC as soon as possible
• They will seek insurance approval for new MRIs at MDACC and to see a Neuro-Oncologist
• Have new Labs and MRIs taken at MDACC
• See a Neuro-Oncologist at MDACC (specialists of cancer in the brain) and have them review my case to see what their opinion is of what should be done next

We will most likely have the labs and new MRI and Neuro-Oncology visit done on the same day in Houston in the coming 2-3 weeks. The Neuro-Oncologist will give us his opinion and then our two doctors will discuss my case. If they both decide that surgery is the most prudent option, we will go with that. The first possible date for surgery is June.

So that was what we discussed with the doctor and he stepped out along with the resident and the Nurse Practitioner was ready to talk to us, but I needed a moment. She offered to step out and I had to let it go. What the doctor said scared me. I knew that the risk would be inherently higher this time, but dang. And paralysis would really suck, but all of it is just damn scary. I just needed to cry and pray that fear out, both of us did. She finally came back in and started discussing the next steps and dates and I mentioned that all of this was really going to destroy our summer plans. We already have four short trips planned in June and July. I know those are really not important, but we started thinking of everything. She asked us what our plans were and we told her the first was in June and she mentioned that we probably would not make that one. Then she asked us what else we had going on and we told her about the two weddings in July and a five year family reunion. Then she said that we’d probably be able to make those. I didn’t get it and I mentioned that I didn’t know how because I’d probably be in Physical Rehabilitation for a while… she leaned in toward me and she said that we ‘would not have to worry about that.’ I didn’t get it. It threw me off. Then she said, ‘Dr. Lang is good,’ that ‘people wake up from their surgeries moving their arms and legs saying that they love Dr. Lang.’ I still don’t think I got it after everything she told us. I was a bit stunned. We talked about what we needed to do next and that was it. We were done. We got there at 7am and were done by 10am.

What she said made me feel better, but know we have to be ready for the risks and possible outcomes. Holly and I have a lot to discuss, prepare for and pray about. But I will tell you one thing… I have no doubts about this hospital or our medical staff. They gave us a bunch of business cards and a neat little protector to organize everything in. Our team consists of the following:

• Patient Advocate
• Social Work Counselor
• Patient Access Coordinator (deals with Insurance)
• Nurse
• Nurse Practitioner
• Neurosurgeon
• Neuro-Oncologist
• And many other professionals we have not even met yet

I feel pretty good about this whole thing and I’m ready for whatever God throws our way. But I am also trying to live in the moment and enjoy my time with Holly right now because I know it will be difficult after the surgery. So, please do us a favor? Pray for us. Pray for peace for our minds, wisdom for the medical staff, courage to get through this again, provision for all the logistical needs that we don’t even know we need yet, and for God to be glorified through this.

Okay, that’s it for now. This is like the longest blog post ever, but this answers all the questions we have been getting. I’ll try to post MRI images soon so stay tuned. Thank you for reading and staying by our side. We love you.

-Roger

Pray & Praise

We want to thank everyone for the prayers, thoughts and wishes we received on Tuesday and Wednesday. Roger will blog soon with all the details from yesterday and what the next steps are. Many people asked us how they can help or what they can do. There are only two things you can do for us: pray and praise. Pray for God to give Roger strength and courage to go through this again, pray for guidance from the Holy Spirit to make the right decisions for treatment and pray for protection from Satan's attacks and lies. And praise God for all he is, all he has done and all he is going to do. We can't thank God enough for blessing us with the ability to go to MD Anderson Cancer Center for great treatment, our experience there yesterday was unbelievable, and we can't thank God enough for surrounding us with amazing family and friends to keep us encouraged, hold us up and make us laugh. We love you all, thanks again. ~ Holly

Cancer Round 2

The fine doctors at MD Anderson Cancer Center have confirmed our suspicions… the tumor appears to be growing back. But we have a plan and are ready to fight it again. I'll have more details later today on the blog. We are driving back from Houston now and can't wait to get home. Thanks for the prayers.

-roger

Headed to Houston

It is Tue afternoon and Holly and I are heading to Houston. We will be
staying with Holly's friend Tina. They were battle buddies in Army
Basic Training and have not seen each other since 1994! So it will be
a nice visit. We head out early Wed morning for our 7am appt. We will
both try to update on facebook and Twitter tomorrow. If you go to the
blog site there are links to our facebook and Twitter pages on the
right side of the page. Check back in tomorrow to see the heck we are
up to! I am excited to begin the process to see what may or may not be
going on. But there is always the chance they will tell us to come
back in a few months for more tests. We'll see. Thanks for the prayers.

-rog

Ready for MD Anderson

I got a call early this morning from Wandra at MD Anderson Cancer Center (MDACC) telling me that they did get my stuff and the doctor was going to review it as soon as he could.

I got a call a few hours later from Wandra telling me that the doctor could not get the CDs to work on his computer. Now me, being the IT expert that I am, knew that those CDs were going to workk fine, they were exact copies. I asked her if she had them and she said yes. I asked her if she could see if they work on her computer. And they did. She said she'd call me back later.

She called me back later and said that the doctor has to review them at Wandra's computer and that he wanted to see me and the first available appointment was next Wednesday, April 28. I said yes and took the appointment. I felt bad because we have a lot of stuff going on at work that I amm needed for, but I knew I had to take it. So there, prayer answered... thank you for praying... the doctor will see me now.

We have to be there at 7am, so we are planning to drive the three hours Tuesday evening and stay at a friend's house in the Houston area. Those of you that know me well know that I am not a morning person. There's no way I can get up at 3am to be there by 7. NO WAY! :-) They sent us some forms to fill out and instructions on where to go when we get there.

So my foot is in the door now. We just need to wait and see what they see in my head. Hopefully nothing. Wait... dang.

Getting Reacquainted With Cancer

As you might know, I had an abnormal MRI in Feb. We are not sure exactly if there is anything wrong. I was being followed by the Army hospital in San Antonio, but had a relatively unpleasant experience when I saw a neurosurgeon about this last MRI and my confidence in their care plummeted. Care at a military facility is free, but I was willing to spend some money to get better care. Last week Holly and I were looking at the slim pickings of neurosurgeons in Austin when I discovered that the doctors at the MD Anderson Cancer Center in Houston also take my insurance. I called them up last week and was told to gather as much information for them as I could and overnight it to them. I burned a few copies of MRI CDs and some pathology and radiology reports and sent them off yesterday. I also wrote the doctor a letter that I want to share with you. For those of you that are not up to speed with my history, it is a quick overview:

April 19, 2010

FEDEX PRIORITY OVERNIGHT 793461030701

Dr. Frederick F. Lang, Jr., MD

MD Anderson Cancer Center

1515 Holcombe Blvd

Houston, TX 77030-4000

Attention: Wandra R 7.1651

Dear Dr. Lang,

Thank you for reviewing my case.

I am a resident of Austin, Texas. I was living in Austin when, as a US Army Reservist, I was deployed to Washington, DC in May 2004 for an unexpectedly long time. In November 2005 I began to feel involuntary jerking in my right arm. I was being treated for a back injury at the time and my primary Doctor at Bolling Air Force Base thought that it might be related to the pain medication I was taking. It was not until February 2006, when after my back treatment was complete and the jerking continued, that my doctor referred me to a Neurologist at Andrews Air Force Base. The Neurologist performed an EEG which was normal and prescribed an MRI. I went to the National Naval Medical Center (NNMC) in Bethesda, MD for my MRI in the morning and the Neurologist set me up to see a Neurosurgeon in the afternoon. The Neurosurgeon set me up for a craniotomy to be performed in several days.

My surgery was performed at NNMC on March 3, 2006. The tumor was identified by the Armed Forces Institute of Pathology (AFIP) as a grade II Ependymoma. The surgery went well with no complications other than the fact that the right side of my body was completely paralyzed. The hemi-paresis lasted ten days and NNMC transferred me to the National Rehabilitation Hospital (NRH-MedStar Health) in Washington, DC. After a little speech therapy, moderate occupational therapy and extensive physical therapy, I was able to walk again with a cane and was discharged on April 4, 2006. At that time, my right side was still very weak and the muscles from my ankle and below had not begun to move yet.

I participated in outpatient physical therapy for several more months and eventually gained limited ankle and toe movement. One month after being discharged from NRH I began radiation therapy at NNMC. I went to NNMC every day for over a month and received the fullest dosage of radiation I could get (as I understood from my Radiation Oncologist.) Also, while in DC, I suffered from three tonic-clonic seizures. All three started on my right side with my big toe; it felt like I was having a cramp in my foot with my big toe and then progressed to a full seizure. These have been controlled with anti seizure medication (Keppra 500mg AM and 500mg PM / Tegretol XR 400mg AM and 600mg PM); my last seizure was April 2007. Although my seizures have been controlled, I have always had twitching of my right foot’s big toe and also of the muscles on the left side of my right foot… consistent with the focal point of the seizures I did have. My right calf still exhibits quite of bit of muscle atrophy and my writing has never really gone back to what it used to be.

The Army insisted I stay in the beautiful Washington, DC area at Walter Reed Army Medical Center (WRAMC) to determine my disability status and after almost a year I was finally determined to be 70% disabled by the VA and the Army placed me on the Temporary and Disabled Retired List (TDRL) with 100% Army Disability. I finally returned home to Austin, TX in March 2008.

While in DC my MRIs were performed at three then four month intervals. Back in Texas, being followed by Radiation Oncology at Brooke Army Medical Center (BAMC) in San Antonio, I was only having MRIs every six months. All MRIs through July 2009 were normal showing no changes. My last MRI was taken February 2010 and the Radiologist report indicated a .7mm change in size of a mass and I was advised to follow up with another MRI in three months. I did receive a referral to a Neurosurgeon at BAMC who we did see, and he did look at the images, but he seemed more annoyed with us than anything and told us to have the other scan in three months and then come back and see him.

I was content to follow those instructions, but about three weeks after seeing the neurosurgeon, I started noticing that the twitching on my right foot was more forceful and moving for a longer period of time. The twitching has also moved up my right leg and is now present in my lower calf, upper calf behind my knee, right of my shin, above my ankle and seems to be moving to my hamstring. The twitching feels like someone is tapping my body, or feels somewhat tingly. It is a sensation I have not had before and that is what concerns me. With this new activity, I decided to only trust my life with the professionals at the MD Anderson Cancer Center.

Enclosed you will find my last four MRI radiologist reports, the pathology report from the tumor and four CD containing MRIs from 2006 through the most recent in February 2010. Please note that the two oldest CDs will not work on Windows Vista or 7, they only seem to work on Windows XP. The newer CDs will work on any Windows PC. You may contact me with any questions at --- or by email at ---.

I look forward to working with you to seek answers and solutions to this possible recurrence.

Sincerely,

Roger J. Mommaerts, Jr.

SFC, USAR, RET

I saw that the package was delivered before noon. I didn’t get a call from them today and decided to call them around 3pm but was only able to leave a message. I don’t know where we go from here. I don’t know if they will ask me to come to Houston to run tests or ask me to just have my next MRI with the Army at the end of May. I really just want to go to Houston and have them test the heck out of me to determine if there is anything wrong or not. I’m not going to say that I’m not scared because that would be a lie. I have cried a lot at work and at home in my wife’s arms thinking about all of this. But with MD Anderson as a possible solution, I feel a lot better. I try to keep my mind off things by working and spending time with Holly. There sure are a lot of I’s in this post, so I’m going to stop for now and just post it. When they call me tomorrow I will let you know what they say. Right now we just need your prayers… prayers for peace and for healing. And also please pray for my friend and co-worker Jay. We sit across from each other and both of us are going through quite a bit right now. But I think he needs more prayer than I do. He has lung cancer now which is a reoccurrence from when he had cancer in a different part of his body five years ago. So, yes… prayers for healing big time.

Thanks,

-Roger

New Location for the Blog

Hi everyone, as you may have noticed, the blog has moved to a new address. We host our blog with Blogger, who is owned by Google. They were no longer supporting the way we publish our blog posts so we had to move it to a different server. This really should not matter to you. If you subscribe to the emails you will still get them.

We don't post a whole lot on the blog these days, Facebook and Twitter are just more convenient. If you want to follow us there you can find us at the following addresses:

• Facebook Roger
• Facebook Holly
• Twitter Roger
• Twitter Holly

That's all for now... more soon!

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Restore the Orphan

So I decided about a month ago I was going to put triathlon on hold this year and concentrate on my running. I have a few reasons why I want to concentrate on my running, some I am not ready to share yet. But one is that I'm just not feeling swimming for some reason. Which is strange. I love to swim. I don't know what's going on with me. But I am loving running right now. I think I am feeling running right now because my body needs it. Have you ever heard that saying about your body knows what you need. Like when you crave certain foods it's because your body needs the nutrients or whatever from that food. I think my body needs me to be running right now. My goal was to run more frequently and then longer and faster. So last week I started running three times a week. It was great. I loved it. See, my body must need it right now for me to think running three times in one week feels great. I know, I'm weird. I've heard it my whole life. "You don't like chocolate and you love to run? You are so weird." I'm used to hearing it.

So last week I ran 13.5 miles total. And I want to keep up with that for as long as I can. To help my triathlon training, I always registered for a triathlon to have a reason for all the training. But I didn't really have any running event to keep me going except for the tons of 5K's and 10K's in Austin almost every weekend. Then Sunday at church, our pastor mentioned a half and full marathon for adoption in October. For a second or two I thought, I could do the half marathon by then. I even spoke to a friend after church who's doing the full marathon and told her I'd think about running the half. Then today I got an email from another pastor at our church about a team from our church for the adoption marathon and I got excited. I always had to do triathlons by myself since no one ever wanted to do one with me, but there are tons of runners in our church and I did several runs last fall with them. It was nice to do a run with friends. God has spoken to many people at our church recently about adoption and many of them are going through the adoption process now. And I can't think of a better reason or time to have a team from our church run as a team in a marathon for adoption. It's just so cool. I love how God works. I get goose bumps just thinking about it.

So I'm registered for the half marathon. And I would love for you to join me and the team from my church. You can read more information and get the links to register, etc here: Restore the Orphan. I completely understand if you don't want to run a half or full marathon, so please consider supporting our team. If you are wondering what kind of training it would take to run a half or full marathon, check out this website Cool Running. They have lots of good training programs, for free! Not only would you be supporting adoption, but you would be improving your health. So join me. ~Holly

"Green" Easter Egg Hunt

On Saturday, April 3, 2010, the Austin Farmers' Market will have a "Green" Easter Egg Hunt starting at 10:00 am until total pick up (lasts about 15-20 minutes) in Republic Square Park.

Come be a part of a truly "green" event with no sugar, high fun! We'll have two stages of 'hunt' in Republic Square Park to let the little ones go first at 10 am sharp, then let loose the older kids several minutes later.

Please help us prepare the farmers' eggshells to fill with grass seed for the "cascarone" eggs that the kids pick up. Come to the info booth to get empty cartons to then fill up with empty egg shells that you prepare at home. Then bring them back now for the kids to fill three weeks before the event!

How to prepare empty egg shells:

Hold up your egg in left hand, smaller pointed end up. Tap gently with knife, spoon or fork to make an indentation in the top that is the size of a silver dollar. Then take your right thumb and pointer finger together to punch through the weakened shell and pinch out the shell on top to make a hole the size of a silver dollar (or larger). You will be inserting your thumb into the egg white--so don't be queasy. Throw the pinched out pieces of shell into compost. Shake out your egg into your container for cooking later. Gently rinse out the shell with warm water, turn over for drying a few minutes on a towel. Put into empty egg carton for storage until you have enough to bring to market!

Combo Loco

Sometimes I am a complete idiot. Why didn't I think of this a long time ago. I love HEB's Combo Locos. They are great. You buy one or two items and you get one to five items for free. For instance one of this week's Combo Locos is buy a Stouffer's Party Size Lasagna or Enchilada and get these four items for free, Nestle Nequick, white baguette bread, Creamy Creations sherbet, and Fresh Express Caesar or Caesar Lite Complete Salad. Not a bad Combo Loco.

Most of the time the Combo Locos have at least one or two items I don't want or won't eat in the list of free items. Like, I wouldn't get the Nestle Nesquick if I was going to get this Combo Loco. Sometimes it's the whole thing, buy and free items I don't want. So usually I just don't get the items I don't want or I don't like. I always get asked at the check out, you didn't get "blank" and I always respond, "I didn't want it." Now to my mother that is sacrilege. Her philosophy is, "It's free!" My philosophy is if I won't eat it, it will just spoil or if I shouldn't eat it, I'm not going to bring it into my house.

So today I went to HEB for our weekly grocery shopping. One item I was already going to get was a bag of salad lettuce. Roger and I eat about one or two a week. We love salads. So I ventured to the produce section and saw an HEB employee putting Combo Loco coupons on all the bagged salad. I scanned it real quick and saw I wasn't interested in the deal. It was buy one bag of bagged salad and get a four pound bag of Texas oranges for free. What was I going to do with four pounds of oranges. Roger and I eat a lot of fruit every week, but four pounds of oranges would go bad on us. It's just the two of us at home. We don't have any kids. We have friends and neighbors with kids over to our house, but how was I to know if they'd be around to help us eat them before those four pounds of oranges go bad. And I'm sorry, I hear this from my mother-in-law a lot, but I don't want to freeze them. So I started to grab the bag of salad lettuce I wanted and the lady said, "Oh don't forget your coupon. You get four pounds of oranges for free." And I said in response, "Thanks but I can't use up four pounds of oranges before they go bad." And she said in response, "Give it away."

That's when it hit me. Give it away. Duh! Give it away. Not only could I help a family by giving them free food, but it made me think of all the times I had not gotten free items because I couldn't use them or didn't like them that I could have given them away. All the families that could use the stuff I didn't like, the homeless people I drive by every day, the food bank that always needs help. I think there is even a bin at HEB where you can donate food. Ugh! Talk about wanting to kick myself in the rear. So that's what I'm going to do from now on. If I'm buying a Combo Loco and there are free items I don't want, I'm going to give them away. Why not? HEB is giving it away for free anyway.

I wanted to share this because I figured some people do the same thing as me. I ask that if your grocery store combines items you don't want, please give it to someone in need. Thanks-Holly