1035 Brain Cancer Timeline

Monday, December 25, 2006

I've been cleaning out old hardcopy files, and I found some stuff I want to preserve, just in case my hard disk fawl-down-go-boom. This seems like a good place to put it, this being "my journal" and all that. It may or may not be interesting to anyone else, but that's not the point. Whatever. Just thought I'd warn anyone who stumbles into this entry.

When Jay was ill, I kept a timeline, so that as we went from medical center to medical center, doctor to doctor, they were aware of what had gone before, and what films and lab reports were available. This is it. We must have had very good doctors, because believe it or not they really were interested in this information, and often asked for specific materials. We always requested and got "second originals" (not copies) of scan films and copies of reports, so we had them instantly available, in our possession. By the third year I was carrying around a canvas bag containing about 30 pounds of films and reports.

I am going to throw out the lab reports, but I still have all the MRI and CAT scan films.

• 10/03/98 First seizures. ND Hospital. Dr. WGooch. Start Dilantin.
• 10/03/98 CT scan - judged normal.
• 10/08/98 MRI - shows tiny "pinhole" bright spot, so small a different "slicing" would have missed it..
• 01/28/99 Followup MRI shows "golf ball" sized tumor.
• 02/07/99 Complete body bone scan to rule out secondary source, Kingston Hospital. (Shows right kidney is missing. Surprise.)
• 02/08/99 Pre-op MRIs, Albany Medical Center.
• 02/09/99 Right parietal occipital craniotomy and resection of brain tumor. AMC, Dr. JPopp. Pathology says high grade mixed glioma, oligoastrocytoma.
• 02/11/99 Post-op MRI, AMC.
• 03/08/99 Sign up for clinical trial of intensified PCV (procarbazine, CCNU, and vincristine, at 150% the normal dosage) with bone marrow transplant (BMT). AMC, Dr. SWeaver.
• 04/06/99 Start stem cell collection (apheresis). Has "absence seizure" during procedure on 04/07.
• 04/08/99 End apheresis.
• 04/19/99 Start PCV clinical trial cycle 1 (42-day cycle).
• 05/05/99 MRI, AMC.
• 07/02/99 MRI, AMC.
• 08/23/99 Stopped PCV after 3 cycles. Prior MRIs say tumor is under control. Start testing for bone marrow transplant.
• 09/19/99 MRI, AMC, last tests before BMT.
• 09/20/99 Yesterday's MRI shows tumor has returned, as big as before surgery. BMT canceled.
• 10/05/99 Pre-op MRI.
• 10/06/99 Right parietal occipital craniotomy and resection of tumor, AMC, Dr. JPopp.
• 10/06/99 Post-op MRI, AMC.
• 10/27/99 CT scan for radiation planning, Vassar Brothers Hospital.
• 11/04/99 Start fractionated radiotherapy, VBH, Dr. MBurke.
• 11/05/99 CT scan for radiation planning.
• 12/21/99 End fractionated radiotherapy, 33 treatments.
• 01/10/00 MRI, AMC.
• 02/01/00 Start Temodar, AMC, Dr. SWeaver.
• 04/05/00 MRI, AMC
• 06/06/00 MRI, AMC, after 4 cycles of Temodar. Shows tumor regrowth.
• 06/14/00 Thalium spectroscan, AMC.
• 06/26/00 MRI, AMC, planning for radiosurgery.
• 06/27/00 Steriotactic radiosurgery, AMC, Dr. VKing and Dr. JEmerich.
• 07/06/00 Dr. SWeaver goes on maternity leave. Dr. VKing covering.
• 07/10/00 Start Tamoxifen (200 mg/day), AMC, Dr SWeaver/VKing.
• 08/14/00 MRI, AMC.
• 10/16/00 MRI, AMC.
• 10/23/00 Superficial clots in left leg, AMC emergency room, develops tremor and fever while there, admitted. Diagnosis: Increased edema in brain, probable tumor regrowth, taken off Tamoxifen, put on Dexamethasone. Note - all his doctors are at symposiums all week.
• 10/25/00 Thalium spectroscan, AMC.
• 10/27/00 Discharged from AMC.
• 11/02/00 Regular doctors reexamine scans. Tumor has not increased in diameter, "may" be growing into surgical cavity. Put back on Tamoxifen.
• 11/09/00 Greenfield filter implanted, inferior vena cava. Pre-procedure tests again show missing right kidney, and left kidney enlarged, with funnel-shaped "mega-ureter" (which totally freaked out the short-coats until the long-coats arrived).
• 11/27/00 "Left-side neglect" begins. He doesn't recognize his left side, can't put pants, coats, etc. on.
• 12/18/00 MRI, AMC, tumor is apparently growing, increasing edema. Carboplaten is offered, but we reject it because the side effects are so bad.
• 01/03/01 Sign up for immunotherapy trial at Nalitt Cancer Center, Staten Island, Dr. SPannullo.
• 01/10/01 Craniotomy, Staten Island University Hospital, very wide excision, Ommaya reservoir implanted. Post surgical - severe left-side neglect, paralysis, psychosis, DVT both legs, visual disturbances, low sodium & hematocrit, etc. Pathology report shows some tumor excised, but apparently mostly necrosis.

[Editorial - At this point I was extremely angry. This surgery damaged him terribly. They removed at lot of healthy material. When the doctors at AMC, SIUH, and Nalitt looked at the scans, they couldn't tell the difference between tumor and necrosis, which is not unusual. But Jay had no midline deviation, and the brain sinuses were normal. We begged for a PET scan, which could tell whether the mass was active or necrotic, but neither AMC nor SIUH had the facility, although competing hospitals did, and no one would write the order. It looks to me like the Tamoxifen was working, hence all the necrosis, and this degree of extremely damaging surgery was unnecessary had we known it was necrosis. In addition, his care at SIUH was extremely poor, uncaring. When he was discharged, I had to promise him he never ever had to go back there again.]

• 01/12/01 MRI, SIUH, post-surgical.
• 01/24/01 Xfer by ambulance from SIUH to Sunnyview Rehabilitation Hospital, Schenectady.
• 02/07/01 Discharge from Sunnyview (an excellent facility, BTW). Can now walk with walker with constant verbal cueing.
• 02/08/01 To Nalitt to begin immunotherapy, Dr. RHayes. White cells collected.
• 02/12/01 Infusion of treated white cells and IL-2 into tumor bed, through the Ommaya reservoir. To continue three times a week, MWF, six infusions per cycle.
• 02/16/01 Third infusion. Jay is getting weaker, losing remaining control of left side. After third infusion and 2.5 hour drive back home, he can no longer walk. EMTs called to get him from car to bed. Subsequent infusions cancelled. Much mental confusion, cannot feed self.
• 02/23/01 MRI, ND Hospital. Shows edema throughout right hemisphere, severe mid-line deviation. Projectile vomiting begins.
• 03/06/01 Focal seizures. Visual disturbances increasing. Delusions and hallucinations. Can no longer sit at side of bed or transfer safely to wheelchair, even with assistance. Periods of no response to any stimulus.
• 03/12/01 Vomiting partially controlled. Some mental confusion, but more responsive.
• 03/xx/01 Dr. SPannullo posits that Jay had an extreme reaction to the white cells, and that a reduced amount on infusion may be better tolerated. Because he cannot withstand the 5 hour round trip three times a week for infusion, we decide to move him to a nursing home in Staten Island, closer to the cancer center, for the duration of treatments.

The nursing home was an awful experience. The place was a hellhole, right from day one. I kept a more detailed diary on that place, and seriously considered a lawsuit - except that they kept removing pages from his records, and "correcting" records, and would not make copies, and so I ended up with blessed little hard documentation.

That's another entry.
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