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Old 04-27-2012, 07:48 PM   #1
Rainsong
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Default The crisis you have to worry about most

is the one you don't see coming. Mike Mansfield

On March 27, my husband was found in the parking lot of our local Martin’s grocery by two health department employees suffering from a seizure. They immediately called an ambulance, then used his cell phone (which he was attempting to use when the seizure occurred) to hit “redial” and notified me.

At first the doctors weren't sure what was going on but they thought either a reaction to his meds (not likely since nothing has changed and there are no new meds) or he had a stroke.

His speech was garbled, he had difficulty using his left arm and he was
having seizures.

The only thing I knew for sure was we were both scared.

During the four hours I was at the hospital (came home to take care of Abby, our pup, and get a bite to eat while he had his CT scan since I could not accompany him), he did regain some use of his left arm and I was able to understand some of what he was saying. He also had regained his sense of humor--he asked me to bring Abby back to hospital with me.

The CAT scan came back negative for stroke, so they performed an MRI.

The MRI showed a 3/4" diameter tumor on the right parietal lobe. Full body X-rays show he has no other tumors in his body so this was considered a primary site. The neurosurgeon said the tumor was close to the surface and relatively small.

Surgery was on Monday, April 2, after which a section was sent to pathology to determine whether or not it is cancer. Hubby came through the surgery fine, except for an infection from his IV, but we won't know whether the tumor is malignant or benign for a few days yet.

He's still keeping his sense of humor, so that's good.

So far it doesn't look like any lasting damage to his brain or body functions. No sagging face muscles, no limitation on his limb movements. Still, I felt like I had been holding my breath for over a week.

April 10
At the neurosurgeon appointment the staples were removed. Then the doctor dropped the bomb that sucked all the air out of the room. My husband has been diagnosed with glioblastoma multiforme, an aggressive brain cancer--the same kind that killed Teddy Kennedy. Prognosis is not good but we are not giving up hope. There are some people who have survived 10 or more years with this type of cancer. Most die within two years and many in a lot less time. While the neurosurgeon was able to remove all of the body of the tumor, glioblastoma has microscopic tendrils which are impossible to surgically remove as to do so would cause more damage to the brain. Neither radiation or chemo are very effective but sometimes they do work for this type of cancer.

Radiation oncology appointment is set for April 23. This had to be postponed as my husband suffered another seizure the same day and was sedated at time of appointment. He had a few short seizures over the weekend culminating in the wallapalooza on Monday.

We did get to see the radiation oncologist on Wednesday (25th). He is coordinating with the oncologist at the VA in our area so the treatments will be covered by the VA. Since the treatments have to be given on a daily basis and the nearest VA hospital is over 70 miles away, there is no way we can do the trip each day.

And, because of the IV meds on Monday, his arm became infected (for the second time) which meant we ended up at the local VA clinic for antibiotics. The radiation oncologist also gave him an additional med to take when he felt a seizure coming, one that works faster than the regular anti-seizure meds he was prescribed after surgery. His neurologist also increased the dosage for the anti-seizure meds so hopefully those will be under control.

We've had our wills, Power of Attorney and Advance Directives drawn up and now have to make an appointment to have them signed and recorded.

Monday (April 30) we go to see his neurologist and on Wednesday, we have to make a trip to the VA hospital so their doctor can give the okay for all additional treatments can be performed locally.

Rainsong
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