3. Surgery and Recovery

How did we know Ted had a brain tumor?
These pages were written shortly after Ted's surgery and treatment, so some of the information might sound out of date.  He is no longer taking chemo or radiation and has not taken any chemo for three years. 
Personality changes

Ted in 2004, two years prior to diagnosis

Three to four years prior to his diagnosis, I noticed personality changes. I once asked him what he had done with my real husband.  He just shrugged.  I asked him if he was depressed, but he insisted he wasn't. He got fired, not once, but three times in a two year period. He decided it was in his right to let his employers know what he really thought of them.  His filter was gone.  His brain was swelling and the cancer was invading his right frontal lobe, the lobe responsible for emotions. 

Mt. St. Helens

One year prior to diagnosis  in 2005

The headache to end all headaches

May 29, 2006

We drove to an urgent care facility and the on call doctor told us to run, not walk to Legacy Salmon Creek ER.  Between Ted's three week long headache and personality changes, the doctor knew something was seriously wrong.  He was just one of several medical professionals who helped save Ted's life. He told us to make sure the ER docs didn't let us go with the standard treatment of a pain medication and no further investigation.  He told us to demand a CT scan.  He said to make sure they knew there was a personality change.  I did what he told me and six hours later, we sat in the ER, Ted on a  gurney, me by his side, waiting for the life altering results.   

Alternate Universe

A pretty blond doctor, something you'd expect on a TV show, threw open the flimsy curtain that separated us from our old world and what was to become life in an alternate universe and said,"You have a brain tumor.  A Neuro consult is on the way down." She said it with such casualness, Ted thought she was joking.  She confirmed what I already knew.  

The Neurosurgeon, Dr. Ashok, Modha, seen in the picture to the right, came down and spoke with us before Ted's MRI. He had style and grace. He was East Indian and had studied in Canada. His calm and gentle manner reassured us in an extremely difficult time. Even after the MRI reported that it was, what he termed, probably a slow growing tumor about the size of an orange that had completely compressed and consumed his right frontal lobe, he continued to be positive and caring. 

 In the years since, we've been told by brain tumor experts from San Francisco to Boston, that Ted's longevity likely has something to do with an extremely skilled surgeon.  We can't thank Dr. Modha enough.  

Frontline of treatment

Drugs

Ted was immediately put on Dexamethasone to ease the swelling in his brain. They couldn't operate until the swelling went down. The headache disappeared but the nightmare began. He did not sleep or eat well. He was wired. He could barely sit still or lie down. Closing his eyes was difficult. He was hypersensitive to light, sound, smells, physical movements, and his taste buds had pretty much given up and died. He kept telling people he missed my spicy Mediterranean food.  

Dr. Modha was concerned about getting the tumor out and doing the biopsy as quickly as possible, but the drugs needed to reduce the swelling. It was two weeks before they could operate. Once Modha was able to remove the tumor, he said it was likely Ted wouldn't have survived another two weeks. 

Surgery

June 13, 2006

:He was  prepped, mapped, poked, and knocked out. I stood in the hallway and watched them wheel him into surgery.  I have never felt more alone.  Tears filled my eyes.  My voice was gone. I thought I'd never see him again. He was wild eyed and ready to get it over with. 

Day two ICU

 Tip for those getting brain surgery: Shave your own head. They only shaved the front of his head, leaving a bloody post surgery mess. They cut him from ear to ear, across his scalp and peeled his face down over his eyes and nose, boring a 2 inch diameter hole in the right side of his skull.

First day at home.  Four days past surgery.

In his words:  "After scooping out what was reported to be at least 95% of my tumor (there are always fibers not retrieved) they plugged, pinned and screwed together my skull. Then they flopped my face back up and over and took out all the wrinkles to boot! I woke up in Intensive care some 6 hours later with more needles and tubes and tape in and on me than I thought possible. The next few days and a couple of weeks were the worst thing I'll ever have to remember. About a week into it I described the sensation as having an over blown balloon for a head and a Tesla Coil at full spark inside it!"

 

Week three the black eye is almost gone        

  Week four the healing begins

Radiation and Temodar from Ted's point of view

Before surgery, my surgeon had predicted that the large size of my brain tumor was a good indicator that it probably wouldn't be cancerous. Not only was it cancerous, but it was a Glioblastoma Multiforme. A.K.A stage four brain cancer. The news devastated my wife and family. I was given three months to a year to live as are all GBM patients. At this point, the doctors told me they wanted to do six weeks of radiation treatment along with a half dosage of a phase three drug called Temodar. I had no idea what to expect and my wife tells me that she feared everything at that point. She was afraid the radiation would either make me so sick that I would die or that it would permanently damage my brain. She was also afraid that the Temodar would kill me. The oncologist is not a good communicator and we had no real indication of what either of these treatments would do. I'm still using Temodar five days of every month along with the Zofran.
This information was written several years ago.  Ted stopped chemo 2009.  

My bald days. Crater Lake, OR 10/06

RADIATION TREATMENT: The Radiation Oncologist had explained that the focusing of the beam was critical not only so as to be most effective but also so as not to damage surrounding tissue that could easily render me blind, deaf and/or dead! The mapping was done with a CAT Scanner and a heat molded polymer mask that locked my head into place and held it quite firmly. That data was computerized and the radiation was planned out to burn from three angles at a varied intensity and for various lengths of time. The treatment sessions took nearly 45 minutes but the actual "beam on" time was probably about 12 minutes. I was to have 30 such exposures Monday through Friday for 6 weeks and at the same time I was taking a partial dose of Temodar (75mg). I also took Zofran for the potential nausea and they had me back on the Dexamethasone to help the brain deal with the shock of radiation.

There were two dose/exposure changes and a couple of remapping Scans throughout the 6 weeks. Odd reaction: With each exposure I could see a bright blue light decidedly from the angle of exposure (my eyes were pressed closed by that mask) and, I could clearly smell a burning ozone odor. I asked about those things and was told that there is no light source and no one else smelled anything at all. That information along with the Radiation Oncologist's comments about damaged tissue affecting my senses, made me just a tad bit uncomfortable. Hair loss was the one thing that they warned me about and said that everyone is different so I could expect it but they could not say when. Where was simple; It burned off at the point of entry and at the point of exit. The pictures show the odd pattern that the radiation was leaving.

About week 3 I had some hair thinning and loss and that slowly increased until I looked pretty stupid. Time to shave it off. I did so and maintained that fashion statement for 4-5 months when I got tired of the effort and the hair was seeming to want to grow back. I do have a bullish head of hair. It grew back right through the scar lines and pretty much as thick and healthy as ever. I've kept the crew cut for a year now and I am just considering letting it get a little longer. Otherwise the chemo, Temador, kept me just a little off my feed and the radiation made me feel a bit fatigued several hours post exposures. You might say at this point I'm a pretty happy camper!

With my Aunt Toni and a full head of hair 14 months post radiation at Pool of the Winds waterfall in

Washington. 10/2007