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
