A little history

For about 2 months, Chris has been experiencing some lightheadedness, head congestion, decreased hearing and occasional headaches.  Primary Care took a look and treated him for the congestion and thought it looked like a eustachian tube dysfunction.  Blood pressure was a little elevated so an additional bp med was added to his current regimen.  After taking the first dose of the new bp med, and while at work, Chris experienced his first episode of what we now believe are seizures.  Janet picked him up from work and brought him home, he had some dizziness at home over the weekend but nothing significant.  The following Monday, October 10 he got up from his desk and had another episode of dizziness resulting in a brief loss of consciousness and loss of bladder control.  Janet picked him up and we went to Urgent Care.  The doctor checked neuro status, did some lab work, and EKG and looked at his ears.  Ears were still "not right" but resolving, everything else was normal.  Had him stop the new bp med and said to follow up with primary care in a week.  Janet left the next day for San Francisco, Chris finished out the week with no further incidents.  Janet returned home on Friday and the weekend was uneventful.  However, the head congestion remained and Chris mentioned headaches a time or two which seemed to resolve with Tylenol.  Remember, Chris has had pretty severe allergies all of his life and the Santa Ana winds have come back to the area which tends to exacerbate the problem.  We chalked most of this up to the ear problem and the allergies.

Sunday, October 16, Chris turned 53 and we spent a fairly quiet day celebrating his birthday.  On Monday the 17th, Chris was at work, got up to use the restroom, experienced the dizziness again and had another incident of bladder incontinence.  Janet drove out to pick him up again and rescheduled his primary care follow up appt from Thursday to Tuesday morning.  PCP still felt like the problem was ears and probably cardiac as blood pressure has been slightly elevated throughout this period of time.  However, he made a referral to Neurology and ordered a cardiac stress test.  Told him to continue to use the Flonase for his head congestion as well as an antihistamine.  Neurology appointment and stress test were scheduled for the following Wednesday.

The rest of the week was, again, uneventful.  Chris and Janet went to a play on Saturday and helped celebrate the 50th birthday of our dear friend Melissa on Sunday.  Tuesday morning October 25, Chris is at work and experiences another bout of dizziness.  He goes home from work and we are happy that the Neurology appt is scheduled for the following day.

Neurology appointment does not point to any neurologic problems.  The neuro status exam, questions of orientation and past medical history, etc. are all normal and appropriate.  The Neurologist feels the symptoms Chris has and the incidents of dizziness, congestion, etc. are not likely to be seizures and probably is related to a cardiac problem.  However, he ordered a CT of the head, an EEG, a carotid ultrasound and a sleep study.  Later that day the cardiac stress test was completed and since the Cardiologist wasn't called into the room and Chris didn't pass out while on the treadmill, we assumed it was fairly normal.  Chris went back to work on Thursday, had no problems that day and finished out the week and through the weekend with no problems and said he actually felt like maybe his head was clearing up and he was starting to feel better.

Monday morning, October 31 at 10am Janet called Chris to check on him and see if he had any dizziness, etc. since it all seems to happen just at work.  He said he was fine, had had a tiny bit of dizziness early in the morning but nothing else.  At 10:15, Chris called Janet back and said he had just had another episode of dizziness while sitting at his desk and had awareness that his arms were moving but did not feel like he was in control of what he was doing.  Felt confused and wanted to know if Janet would e-mail the neurologist, let him know what was happening; that the first available CT scan was November 18 and is there something else he could/should do.  Janet sent the email.  A couple minutes later, Lisa, another co-worker, called Janet to say that Chris was not right and he needed to be seen today, preferably in the emergency department.  The ambulance was called to transport Chris from the office to the ER.  Janet drove out from her office to meet him in the ER.  Chris had not yet arrived in the ER when Janet got there, so she drove up to his office to pick him up and bring him in.  After Janet arrived in the psychiatry department to pick up Chris, he experienced another of the episodes he had been having earlier that day.  He became very unfocused, unable to talk, unable to coordinate his movements and just looked glazed, flat and gone to another place.   When he tried to talk, his speech was slurred and the words didn't make sense.  The EMTs arrived and asked the orientation questions which he was not able to answer correctly this time, however, a few minutes later he was completely oriented and his answers were appropriate.  Chris was taken to the ER at Kaiser, Fontana.

The ER doctor ordered several tests including the CT scan.  We were told the results were inconclusive and Chris needed a MRI of the brain.  Chris is VERY claustrophobic so they gave him Ativan, attempted the MRI and failed, gave him another dose of Ativan, tried again but still no luck.  Back in the ER and the physician said she would speak to Neurology about what to do since they were not able to complete the MRI.  Earlier in the day there had been discussion that the MRI was necessary no matter what it took to get it done.  After talking with the Neurologist, the ER physician said they would try a CT scan with contrast since Chris was able to tolerate that procedure earlier in the day.  The CT with contrast was done and the Neurosurgery chief resident physician told us that there was swelling in the brain, that they look for asymmetry of the right hemisphere and the left hemisphere, but you could see that was not the case.  The ventricles in the right hemisphere were much smaller than those on the left and the CT showed a light white area mostly on the right but pushing into the left hemisphere as well.  At this point it was after midnight, Chris had been admitted to the Adult Observation Unit and the Neurosurgery resident said while they needed to get the MRI, it didn't need to be done that night and they would work on getting it together during the day on Tuesday.

Tuesday, November 1 and more waiting for when and how the MRI was going to be accomplished.  EEG that had been ordered in the clinic last week was done. The decision was made to use Versed and Demerol for sedation for the MRI and Chris went off to have it done.  Apparently it was difficult, but they did barely manage to get the MRI done.  The neurosurgery resident on call that day came by and showed us the MRI.  There was swelling in the brain but there was also a small 0.7 millimeter lesion in the right frontal lobe.  She said it was treatable, Chris asked if he would be able to go back to work and she said yes.  She said the neurosurgeon on the case would be by in the morning and would go over the MRI then tell us what the plan was from there.

Wednesday, November 2.  The neurosurgeon assigned to the case stopped by to see Chris.  It turns out that he is one of the surgeons that Chris worked with a couple of months ago on an awake craniotomy case who Chris really liked a lot and feels very comfortable with.  The doctor told us that he feels the lesion is a low grade glioma in the right frontal lobe.  He will do a stereotactic needle biopsy then refer Chris to a neuro oncologist in the Los Angeles Kaiser facility for treatment; but, he said he needed to get another MRI without contrast to use while performing the biopsy.  He said he would make arrangements for the MRI to be done under anesthesia...more waiting.  Meanwhile, the Neurologist came in and wanted to go over his interpretation of the MRI...bad news...he thinks that even though the contrast did not really enhance the areas of the brain other than the specific lesion, Chris has got an invasive, aggressive tumor throughout his brain.  He emphasized that this was his opinion and that he is not a neurosurgeon or a neuroradiologist and that he feels bad about bringing us this bad news.  A little bit later the MRI department was ready for Chris so he was taken down for the study.  3 hours and 3 studies later, Chris arrived back in his room.  The anesthesiologist said he did well except when his blood pressure started to bottom out and that they had to have two people to keep the mask on him (or something like that).  A little while later the neurosurgeon came back in to discuss the MRI and the plan.  Initially the Neurosurgeon had said that he would do the biopsy the next day (Thursday), however someone started asking questions about at home prescriptions and otc medications.  It was determined that since Chris has been taking baby aspirin every day for the last 5 years he was too high a risk to have the needle biopsy done.  The Neurosurgeon said he didn't want to take the risk since if the needle caused something to start bleeding, they wouldn't find out til later and by that time it would cause a bigger problem than what we need to deal with.  So, the biopsy was moved to November 14.  Janet asked the neurosurgeon about the discrepancy between neurosurgery and neurology.  The neurosurgeon said that yes there is a large area of lighter color throughout the brain, but it did not take up the contrast as a tumor normally will do and they won't know what anything is until the biopsy is done and the pathologist reads it.  He said they would make sure Chris is stable and get him discharged by Friday or Saturday.  Knowing that Chris was in good hands in the ICU and the plan was to move him to a medicine floor the next day, Janet went home to sleep.

Thursday, November 3.  Janet is gathering up some things to take to the hospital and Chris calls.  The neurologist had come back in to see him and unfortunately he came in when no one else was there.  The neurologist wanted to apologize for bringing such bad news but felt he had to tell Chris what the story was.  The neurologist said that based on the MRI and CT scans that were done, he felt that we are dealing with an aggressive, invasive, untreatable cancer that has spread fairly extensively through the brain including the brain stem.  Chris asked what all of this means and was told that with this kind of cancer, he would have 1 to 3 years to live.  Chris asked about going back to work and Neurologist said if it were him he would focus on making preparations to have his family taken care of and just spending time with family.  This was really shocking news in that it is not consistent with the Neurosurgeon's or the Neuroradiologist's opinions and the symptoms he has been having do not indicate that there is a problem throughout the brain, especially involving the brain stem.  Janet got back to the hospital and a few minutes later the Neurosurgeon came in to just review again the plan of care.  We asked him about the discrepancy in opinions and how the Neurologist has given his very grim, terminal opinion.  The Neurosurgeon stood firm in his belief that this is low grade glioma, very treatable and no matter what, there is absolutely no way to tell until the biopsy is done and the pathologist provides his findings.  At this point any thoughts about what it is or isn't remains basically an educated guess.  In the meantime, Chris needs to go home and relax until the day of the biopsy and then when the results are in, the treatment plan will be determined which may or may not include chemotherapy and radiation.  He has been placed on Decadron to decrease the swelling in the brain and Keppra to control seizures.  We spent the rest of the afternoon getting ready to go home.  Thursday afternoon we left the hospital and will return on Monday, November 14 for the biopsy.

Friday, November 4 was uneventful other than the numerous phone calls and text messages checking on Chris and learning that he was home from the hospital.  Friday afternoon Judi Thompson brought Chris lunch and visited for awhile, in the evening Allan and Melissa Steward came over for a bit as well.  Chris was clearly tired though by the end of the evening.

Saturday, November 5 was pretty quiet as far as phone calls, etc.  Saturday afternoon, Chris and Janet went to see Riverdance at the California Theater in San Bernardino.  Janet had given the tickets to Chris for his birthday a few week earlier.  We enjoyed the show but the activity certainly took its toll on Chris.  As we were leaving to go back to the car, Chris appears to have had another seizure that affected his walking.  He had a little trouble getting down the stairs, he said his heel kept catching on the steps.  Janet has her own difficulties with stairs because of ongoing knee issues caused by the tibial plateau fracture earlier this year so she wasn't paying really close attention to Chris coming down.  Once we hit the ground floor though, Chris held onto Janet and as we walked out, Janet could tell there was definitely a problem.  Chris wanted to sit down so he sat on the curb for a few minutes then Janet went to get the car.  By the time she was back with the car, Chris seemed to be back to his regular self.  We spent the rest of the evening at home without further incident.

Today is Sunday, November 6.  Chris has done some laundry today and emptied the dishwasher.  He is sleeping off and on and complained of waking up with a headache today.   He hates sitting around with nothing to do.  We have gotten so many phone calls, text messages and emails expressing great concern, love and support from so many friends and family members.  Forgive us if we don't respond to you all personally; the sheer numbers are overwhelming!  Please know that we have received every one of them though and we feel just so loved and cared about.  God has blessed us in so many ways and we know that he is in control.  Thank you for the thoughts and prayers you are all sending.  We appreciate each and every one of you.   We also want you all to know that if we need anything we will definitely take you up on your offers to do what needs to be done.

Janet and the boys are doing ok too.  We are just blessed to have each other and lean on each other for support.  Sam, Ryan and Jonathan love their dad very much and are very concerned about him but they are going about their normal lives and we have all decided that until there is something to worry about, we won't worry.  Colleen suggested today that we not borrow any trouble, so we won't do that!

Janet goes back to work tomorrow and Janet's parents will be coming down to stay and help out.  They will arrive probably sometime on Wednesday.  You see...we are so very blessed!

We love you all.