Last year was certainly busy but looking back it seemed pretty uneventful in regards to Travis’ health.  Don’t get me wrong, I am more than thankful that he is defeating his tumor but I feel somewhat removed from the caregiver role.  I am not sure that I will ever “retire” from being a caregiver but Travis is significantly more independent than he was a couple of years ago.  He is now in school full time and is working full time.  He still lives with chronic pain in addition to other permanent adverse effects stemming from his tumors and the surgeries. However, over the last 12 months or so he has really learned how to manage his conditions in a way that allow him to live a more typical lifestyle. This does not meant that he does not have bad days; he still does from time to time.  But he has more good days than bad.

This year we went on our first major vacation as a couple. Hawaii.  I was nervous about going because I was worried he might not be able to participate in the physical activities that Hawaii is known for.  He ended enjoying the ocean and snorkeling so much that within a month after we returned home he became a certified open water scuba diver another month later he became a certified advanced open water scuba diver.

This July 13^th will mark the 4 year anniversary of Travis’ second (and last) surgery to remove his brain tumor.  I doubt that when he was laying in the hospital trying to recover from surgery that he ever expected that he would be well enough to be doing everything that he is doing now.

As I reflect on the last 6 years I realize that the old saying, “no news is good news” pretty much sums up why this website had been on hiatus.  I never thought that life could or would go back to normal for us but I was obviously wrong.  I hope that this post gives you strength and encouragement that things can get better.  Please do not ever hesitate to contact me regardless of the length of time in between my posts.  I receive inquiries and comments from many people with many different stories and I am always willing to listen and do my best to help.

Trina

Much has changed in our lives over that last two years. Travis has retired from the Marine Corps. We moved out of our old apartment into the one that we are living in now. Travis had CyberKnife radiation. Victoria started middle school. We received AMAZING NEWS that Travis’ pesky Schwannoma tumor succumbed to Dr. Adler’s treatment. NO MORE TUMOR!!!! I started back at work and went back to college.

Travis accepted his dream job at Northrop Grumman. He entered through a wonderful program called Operation Impact. Since retiring from the Marine Corps. Travis has been seeing new doctors. He struggled through Methadone withdrawal and is now 100% METHADONE FREE. He has a prescription for Vicodin to use for breakthrough pain but he has not taken any since June 30th. He has come a long way from his daily doses of 3000mg of Neurontin and 10mg of Methadone.

Our offer was accepted on our first home. (We are in escrow right now.)

Travis came down with Diverticulitis and then suffered from a secondary infection as a result of the antibiotics given to him to treat the Diverticulitis.

So much has happened over the last two years.  Life sure has not been easy but things seem to be turning around.  We are learning to see the glass as half full rather than half empty.  I expect that we will continue to face hurdles but what I have learned is there is nothing that Travis and I cannot accomplish if we put our hearts into it.

In my opinion, this is proof that CyberKnife radiation works.  It is the best treatment for a schwannoma brain tumor.  If you have a tumor or know somebody who does then ask the  doctor is CyberKnife would work for you.

I want to write more but I donated blood today and my finger is really sore from the prick.  I will try and write more soon.

You can’t ask for anymore than that.  I also got excited thinking that Travis was one of the patients included in the study.  We have not confirmed that Travis was one of the individuals discussed in the article but he will be asking his surgeon tomorrow on his visit.

I will paste the article below and a link to where I found it.

http://journals.lww.com/neurosurgery/Abstract/2009/02001/Cyberknife_Radiosurgery_for_Trigeminal_Schwannomas.4.aspx

Cyberknife Radiosurgery for Trigeminal Schwannomas
Sakamoto, Gordon T.; Borchers, D. John III; Xiao, Furen; Yang, Hee-Jin; Chang, Steven D.; Adler, John R. Jr.
Abstract
OBJECTIVE: Trigeminal schwannomas (TS) are benign tumors that are managed by surgical resection and/or stereotactic radiosurgery. Most radiosurgical series report results using the gamma knife. The CyberKnife (Accuray, Inc., Sunnyvale, CA) is a frameless, robotic stereotactic radiosurgical system. In this series, we report our experience using the CyberKnife in the treatment of TS.
METHODS: We retrospectively reviewed the medical records and diagnostic imaging in 13 consecutive patients with TS who were treated with the CyberKnife from 2003 to 2007. Seven patients had a previous surgical resection. The mean tumor volume was 6.3 mL (range, 0.39-19.98 mL), and the mean marginal dose was 18.5 Gy. Six of the tumors were treated in a single session. The mean clinical follow-up period was 21.8 months (range, 7-53 months).
RESULTS: In this series, the tumor control rate was 100%. The average reduction in tumor volume was 45% (range, 14-98%). A modest improvement in facial pain was noted in 4 of the 6 patients who presented with this symptom. One patient had improvement in facial numbness, and another had improvement in pretreatment headaches. One patient developed jaw weakness and facial dysesthesia, and another patient developed asymptomatic radiation necrosis.
CONCLUSION: Although the length of follow-up is limited, we report our initial experience with CyberKnife treatment of TS. Our results demonstrate tumor control rates and clinical outcomes that parallel those of previous reports using gamma knife radiosurgery; however, long-term follow-up studies are needed.

Stanford Trip

We have GREAT NEWS.  We had an appointment with Travis’s neurosurgeon and he believes that the tumor resection and radiation was a success.  Dr. Adler does not think that the tumor will grow back.  We are ecstatic!!! 

My Classes

I am almost down with this semester.  Many times I have felt like giving up.  We just have so much going on.  But I remind myself that I am a role model to Victoria and that the more education I have, the more I can help others.  Those two thoughts keep me on track.

The Kiosk

Many of you know Travis has started www.tntride.com back in October 2005, just a couple of months before he was diagnosed.  Though he has had some progress he has not been able to fully dedicate himself to it because of his illness and treatment.  If you notice some of the pictures just days after his surgery he still continued working.  Anyway, we proudly opened a kiosk on MCAS Miramar in front of the Exchange.  Travis and I are both really proud of this accomplishment.  So far we have spent two weekends there and both ended being a success.  We are going to be there again next weekend too.  I hope that this kiosk will end up supplementing Travis’s income once he retires.

My Employment Situation

Speaking of income I have had a difficult time finding a job.  I applied to a bunch of jobs here.  I turned down one offer because I was almost guaranteed a position with another company.  After months of negotiations and jumping through hoops I was told that the company has a hiring freeze and they will contact me as soon as that changes but they are not sure how long that will be.  It worries me because without that job we will most likely end up moving back to Los Angeles unless something else comes through for Travis or I.  I hate to think about that so I am just taking things day by day.

Something Else Concerning Me

A Schwannoma brain tumor is a VERY VERY RARE type of a tumor.  Recently I was contacted by another wife whose husband also has a Schwannoma and is stationed at MCAS Miramar.  What are the chances of that occurring?  Travis also worked with another Marine who was diagnosed with a brain tumor.  It makes me wonder if there is a link between brain tumors and the military.  I certainly hope not but I am going to do some research and see what I can find.

After an hour Travis’s radiation was done.  Travis’s neurosurgeon told us that he would like to see us in six months.  He also said that he expects Travis’s eye and jaw to improve over time but if it does not he could see a plastic surgeon.  Travis really enjoyed the mask he had to wear.  He asked his neurosurgeon to autograph it.  Then Travis wore the mask the whole car ride home.  Maybe this is the happy ending to a year and a half of worrying.

(click on the pictures to enlarge them)

We got a call from Travis’s neurosurgeon.  He explained to us that the reason two treatments are needed is because the residual tumor is very close to Travis’s optic nerve.  To be safe the radiation should be broken up into two treatments.  Travis explained to his neurosurgeon that we could not really come back for the second treatment and the neurosurgeon said that having one treatment on Friday morning and the second treatment on Friday evening would work out fine.

Not an hour later we got a call back from the neurosurgeon.  He asked Travis is he could come in”now” for the first CyberKinfe radiation treatment.  We told him that we would be there in 45 minutes or less, we were still in our pajamas when he called.  So we rushed to get ready.  I was excited because I want this tumor to be done with.  Travis started getting really nervous, even more nervous than he was for his surgeries.  I thought that this was odd.  He told me it was because he did not know what to expect.  On Tuesday we were given a DVD to watch that explained the whole CyberKnife process.  We had not gotten around to watching it yet. I suggested that Travis take one of his Ativans to help him relax.

By the time that we got to the hospital the Ativan had kicked in.  Travis was much more relaxed.  Travis was told to lie on the bed of the CyberKnife machine and they fitted the mask over his face.  He was given instructions to stay as still as possible and that if he needed to move (to sneeze, cough, or because he back got sore) to raise his hand and they would stop the treatment and help him.  I took a quick picture of Travis and then let the machine do it’s magic.

About an hour later Travis walked into the waiting room.  He looked like the same guy that I left on the table.  He said that he hardly remembered the experience.  He dozed off for the entire hour but was woken once when a technician offered to put on some music for him.
 

The first radiation treatment has been completed.  Now we have one more tomorrow.  I will try and get a couple more pictures tomorrow.

The IV went in smoothly and Travis waited on the gurney for his turn.  They wheeled him in a room that had the CT machine.  They positioned him on the bed and made the custom mask which will be used to keep his head in place when he gets his radiation on Friday.  When they attempted to administer the contract for the CT Scan there were some complication with the IV.  Luckily the Ativan was working and Travis was pretty calm.  The CT Scan took less than 5 minutes.  After the scan they wheeled as back to a waiting area so that we could wait for Travis’s MRI. 

Dr. Adler (Travis’s neurosurgeon) came by to tell us that there was a “slight problem”.  They were not able to see Travis’s tumor on the CT Scan.  What a sigh of relief.  This does not guarantee that the tumor is gone forever.  What it does tell us is that it did not quickly grow back.  Dr. Adler said that he knew that he got a lot of the tumor out but it appears that the residual is smaller than he expected it to be. 

I will take this great news as an early Christmas gift.  Even though the appointment yesterday went well there was still a little bit of doubt in my mind.  The picture (CT/MRI) does not lie.  There was a chance that the tumor could have grown back like last time.  The fact that the tumor was not seen on today’s scan is a great sign. 

As we waited in the Radiation Therapy unit we had interaction with a lot of different doctors, nurses and Stanford associates.  It is rare when you come across ONE caring person in a day.  In this unit and the entire hospital EVERYONE here is so caring.  It means so much to be in such a comforting environment when you are dealing with medical hurdles.  The majority of life you are a number everywhere you go.  In a classroom, at the bank, at a restaurant, but here, they really make you feel like they care about you. 

Travis went on to have an MRI.  After the MRI we were instructed to return to the Radiation Therapy Unit.  When we returned we were told that they would call us to confirm the radiation appointment for Friday.  After a long day we were ready to go back to the hotel so that we could rest.

I will update again soon.