I wrote and perform the song playing in the background.. See lyrics at the bottom of this page!
Last updated: 11/6/2015 Johanna passed away a few days ago
The path to my diagnosis of a Grade III Oligoastrocytoma was an arduous one, as I had become notably symptomatic by the end of 1994. One night in December 1994, my roommate and I walked across the street to catch the bus down to the BART station to get the train to Berkeley. We were headed to a concert by one of my favorite artists, and I thought nothing could dampen my anticipation of this event. Dizziness then almost overcame me as I struggled to maintain my footing. I'd certainly had nothing to drink and no one was around to whack me upside the head and knock me off balance. A few deep breaths later, and rather confused by what had just happened, I hopped on the bus to the show. At the theater that night, with my favorite vocalist singing to me, I almost collapsed in a heap in front of the stage. My knees began to buckle and I let go of his hand. I strained to stay afoot as my head swirled with the notes of the song and my stomach turned upside down. This was hardly the joyous night out I had expected.
The next day I called for a doctor's appointment.
Are you stressed?? Dr. M. asked me as he took my blood pressure, etc. It was Christmastime. Everyone is under pressure at that time of year. I highly doubt, however, that anyone experiencing stress has dizziness and deja vu and almost falls down at the shopping mall and at concerts. His solution was perfect for me, the supposed hypochondriac: Xanax and a Christmas vacation. Sounds good, doesn't it? I wish it had been that easily solved. Needless to say, I switched physicians after the holidays to a new member of the group. In the early spring I went on antidepressants to help alleviate the sadness and lack of control I felt in my life around these episodes.
After months of spates of dizziness, deja vu, intermittent nausea, and what appeared to be depression, my new doctor was as puzzled as I. I was 26 and otherwise healthy. Then the violent headaches started...waking me up out of my sleep and striking at the most inopportune times, such as at work. An axe mercilessly penetrating my skull. Ironically, as soon as I stopped the antidepressants the headaches subsided...at least temporarily.
I was feeling worse with each passing week, and by late August 1995 my doctor agreed that a visit to a psychiatrist might be of help, especially if these episodes were related to depression. I visited a psychiatrist and was prescribed what was then a new antidepressant, without the same side effects as the usual ones. Maybe there was hope, I thought.
While attending a concert in Golden Gate Park with a girlfriend of mine on September 2, 1995, I was hit again by a violent headache. While I cried in pain Judy helped me walk to the market to get something to help...nothing helped. I was laid up the rest of the weekend, including Labor Day, fighting several blindingly painful headaches.
The day was nearing its end on Thursday, September 7th, and our Executive Director and I were still at the office. As I prepared to leave I was struck again by that axe. I screamed and cried as I tried to do anything I could to make the pain subside. Mike asked me if I was ok, but all I could do was hyperventilate. When I had regained my composure I called my friend Cory...we were singing in a production that weekend for which I had co-written some of the songs. I told her I could not make it to rehearsal that night...the words strained to come out of my mouth. She rushed over to pick me up...she got me home, fed, and put me to bed. Clearly I was not singing that weekend.
I realized I could tolerate no more...the episodes, as I called them, and the headaches. The next morning, on the 8th, I called my doctor's office and pleaded for the first available chance to be seen. I thanked them profusely for the 10:00 appointment. I told my boss, Nadine, that I would probably be back by lunchtime.
Janeen looked me over, and then did an eye exam. She stopped and a troubled look came over her face. there's papilledema I want you to go to the ophthalmologist across the way on an urgent basis. She called over and got me an emergency appointment.
The ophthalmologist performed a battery of tests and said to me, Yep...papilledema and some other things we're concerned about. We want you to get an MRI. I called Nadine and let her know we had no idea yet but that I would call when I knew something more.
I had never had an MRI before this was a new experience. I had to lie perfectly still for about forty-five minutes while inside a machine containing a huge magnet that made extremely loud bangs, chirps, and other noises. I was still lying on the table after the scan had ended when the technologist said to me, There's something showing up on your scan we want the neurosurgeon to look at it.
Neurosurgeon? There must be some mistake. I was pretty sure I would be told there was nothing there and that I had migraines or cluster headaches. Confused, I went to my doctor's office and waited for news. I called Nadine every few hours and told her the same thing nothing yet and I would let her know.
Long after the office was closed, I noticed that a couple of the staff was still there. This must be something major if Makela and Erica were staying around, I thought. Around 6:00 p.m. Janeen came in after receiving a return call from the neurosurgeon who evaluated my scan. She closed the door behind her. My life would never be the same after that moment.
I wish I had better news, but you have a brain tumor, Janeen said. I could not process thisa brain tumor? My first thought was that my father had buried his wife, I would be damned if he was going to bury his daughter. Fight or flight mode was in full effect from the first moment I received the news. I also envisioned an egg in my head being scooped out. It was not that simple as I came to find out. This was more like a softball with tentacles that dug into the surrounding brain tissue.
Janeen told me that I would be receiving a call from the neurosurgeon that evening. I want you to go home and be with family. I don't want you to drive because I don't want you to go into seizures, she told me. I asked her about the potential outcome of this but she could not tell me she did not know. She was not direct but I could tell by the look on her face that she thought my time on this earth might be very limited. She also loaded me up on Dilantin, an anti-seizure medication. (I learned after surgery that I had been experiencing temporal lobe seizures all this time- the "episodes".) Good thing I didn't own a car even though I had a valid driver's license. I took a cab home because I knew I would not make it home on the bus without bursting into tears. I still cried all the way home to Noe Valley but the cab driver didn't seem to mind.
I stumbled up the stairs to my apartment and opened the door, my tears still in full force. Laura looked at me and asked what happened. I could not even articulate it but finally managed to calm down enough to do so. "I have a brain tumor" I just could not say say anything. She called one of our girlfriends, who came over and called my friends in my address book while I waited for the surgeon to call and I dealt with my family. I called Nadinethis was not going to be fun. Nadine I don't know how to say this, but I have a brain tumor. After the shocked silence came a tearful voice, Couldn't you have just gotten the flu? I'll cancel my trip? I stopped her right there. She was due to leave for Paris the next day and I told her to go. There was nothing she could do and I assured her that my family would be coming.
I then waited for the neurosurgeon to call me so that I could get all the details before breaking the news to my parents. The last thing I wanted to do was to call them with half information. Dr. Weinstein called me to introduce himself and to tell me what would be happening on Tuesday September 12th when my head would be cut open for the first time. I would see him for the consultation on Monday. It was certainly not the way I had anticipated starting the new week.
Armed with information but still a blubbering, crying idiot, I picked up the phone to call my parents. My folks were retired, and if you called them after 8:00 p.m. it had better be good. My mom is also very hard of hearing and adamantly refused at the time to get hearing aids, so we spent a lot of time yelling over the television to talk to her.
Me through my tears: Hi, Dad.
Dad: Hi bug, you don't sound good. What's wrong?
Me: Dad, are you sitting down??
Dad then leaned away from the phone and said, It's Johanna, she wants to know if I'm sitting down.
Me: Dad, I have a brain tumor.
Dad to my mom in the background: She says she has a brain tumor.
The conversation ensued in this manner like a Honeymooners episode as I explained to my father what would be happening starting Monday. However, this is not exactly the way it happened. My mother wasn't even home.
Mom straightened me out about this a few years back. Come to think of it, had she been there she would have gotten on the phone with me, right? The irony here is that my mom was enjoying the evening out with a couple of girlfriends having dinner. She learned during their time together that the doctor they all went to had just died of (are you ready for this?) a brain tumor. She had no idea what was about to befall her when she came home.
She walked into the living room to find my grandfather and father sitting in the dark, no lights, no television, and no radio on. My grandfather abruptly jumped off the couch and said, "I think you two need to talk." Then my dad broke the news to her. They immediately paged my doctor, who had graciously provided me with her number and invited my parents to call her. The conversation with my doctor was not easy according to my parents. "We'll do everything we can to make her comfortable," Janeen said.
The whirlwind of the weekend before my surgery took me from going to my office and cleaning off my desk to my parents' arrival on Sunday evening. Monday we met my neurosurgeon, Phil Weinstein, for the first time.
What about when everything is back to normal after surgery?? I asked. Is there anything I might not be able to do? I was thinking about skiing, roller skating, and other outdoor activities that I enjoyed.
Well, your professional football career may be over but other than that I don't think there should be any problem. I told him that powder puff was never my thing anyway. So far, so good; I had the answers I wanted, which I'm sure were far different than those my family wanted. (I was more concerned about losing my musical abilities than any possibility I might not live.) I left the room and he met privately with my family. I don't know what was said there but I'm sure it wasn't very optimistic.
We left the office and headed down the stairs outside to the parking lot. As soon as the door shut behind me, BOOM! My head exploded again into another violent headache. My parents banged on the door to get Dr. Weinstein's attention as my poor sister-in-law tried to sit me down on the edge of a planter while I cried and screamed in pain. Dr. Weinstein came downstairs and witnessed the very thing that got me diagnosed in the first place, and I'm glad he did. He ordered that I be immediately admitted to the hospital, which was just across the parking lot from his office. My parents whisked me off to Mt. Zion and to the admitting office as I tried to calm down.
The first surgery on September 12th was six and a half hours long. I remember waking up in the ICU to see my family and a couple of friends before promptly falling back to sleep.
I had heard that the frozen section of my tumor looked malignant but they needed to confirm via the full pathology. This took a few weeks to get back, which I had been told is normal. On the three-week mark following surgery I called Janeen and asked if the pathology results had come back. She advised that they had.
Me: Is it cancer?
Janeen: I know what it is, but I don't know what it means.
Me: Janeen, please tell me, is it cancer?
Janeen: I know what it is, but I don't know what it means.
Me: IS IT CANCER?
Janeen: Yes, but I don't know what it means. We are going to start you on radiation therapy, and then chemotherapy. She was trying to tell me that she had no idea what would work, if anything. She was married to a neurovascular surgeon who apparently gave her the rundown on my prognosis and this disease the day I was diagnosed. That was an education I'm sure she never expected to have or to need.
I started radiation therapy not long afterwards, without any discomfort or ill effects aside from the cumulative fatigue that starts about halfway through treatment. The regimen lasted six and a half weeks at UCSF.
One morning I woke up to see a sizeable clump of hair on my pillow. I scratched my head and pulled out a huge tuft of hair without even feeling it. I laughed my head off! They told me this would happen and I didn't believe them. I thought it was only chemotherapy that caused hair loss/thinning. I suppose that targeting your scalp at close range with a beam of radiation would hurt some hair follicles. This hardly worried me what fell out grew back eventually anyway.
We're going to start you on chemotherapy as a preventative measure, I was told. The December MRI had shown that the tumor bed was clear and all looked good. Of course there was no way to tell what may have been lurking at a cellular level but I was thrilled there was no visible tumor. 1996 began with then-standard PCV chemotherapy: a cocktail of two pills (Procarbazine and CCNU) and Vincristine, which was administered by IV.
In early March I had another MRI to check the progress of my treatments. I then went to the drug store to pick up my next round of pills. I had received a message on my answering machine from my doctor's office during my brief trip to the store. Don't take your chemotherapy, we found something on your scan and we're not sure what we're looking at yet. I waited on further word as to what was next.
On March 19, 1996, I was sent to Lawrence Berkeley Labs for a PET scan so that my doctors could confirm whether my tumor was back or if the MRI was actually showing radiation necrosis or post-surgical changes. UCSF did not have a PET scan at the time and they were not as prevalent then as they are now. Andy came all the way to San Francisco from his job in the east bay to take me back and forth.
It took roughly three weeks for my doctor's office to confirm that the PET scan was positive for cancer recurrence. I asked if I could take a quick trip away and was told no. On Monday April 15th, tax day, the call came from my surgeon's office. We have you scheduled for surgery on Friday the 19th. At least this time I had an extra day or two to wrap up my life. Don't even ask me if I filed my taxes that year because I can't recall. I called my parents again to tell them of the impending surgery. They came up the day before the surgery and again stayed at a local hotel. My brother Andy and his wife Dawn were still out in the east bay and could be there on short notice.
Surgery this time was much shorter (about three and a half hours long) and recuperation for me was incredibly easy. My mom says that when I was in recovery, Dr. Weinstein came out to talk to them. Her description of him was that of a little boy that had a new toy boat. He was very pleased. They had removed the new growth, which was still cystic, as well as the tumor remnants from the first surgery. Of course this surgery was not quite the emergency that the first one was, and there was not nearly the level of brain swelling as with the initial operation. The pathology revealed that what was left of the tumor consisted of anaplastic astrocytoma, still an aggressive form of cancer. The oligodendroglioma component had been eradicated most likely through my radiation therapy. This time I was away from work for just over six weeks, a far cry from the three-month-plus recovery time of my first surgery.
Dr. Michael Prados at UCSF, who I had met in October 1995, became my neuro-oncologist after the second surgery. We discussed chemotherapy options following this surgery and we decided the best choice was Temozolomide, an experimental drug in clinical trial manufactured by Schering Plough. It was a pill that I would take 5 days of the month, take three weeks off, and start again. Dr. Prados was very thorough in his explanation of how the drug worked and what to expect for potential side effects. We had to watch my blood work carefully to ensure I could continue to tolerate the drug.
Therapy continued as scheduled and I tolerated the Temozolomide very well. A great anti-nausea agent didn't hurt the cause, either. My MRI scans every two months continued to improve and I knew the Temozolomide was working. In April 1997 I neared the trial's end. My blood results had been excellent up until this point, but I hit a wall just before I was to take the last dose when my platelet counts suddenly dropped. For three weeks in a row following that revelation I had my blood checked to see if the platelet counts were rebounding. I could not imagine not finishing this clinical trial. If I was going to be a statistic, I wanted to be among those who had reached the finish line! By the third week they had returned to acceptable levels and I was able to take the last dose and successfully complete the trial. Reaching that finish line was too important to me. I prayed daily that it would happen and it did.
I also discovered what other cancer patients already know: that happiness is indeed the last day of treatment!
I immediately dove into my next adventure, applying for graduate school. Was I insane? I had just been through two years of surgeries, radiation and chemotherapy, and here I was deciding to go back to school! I think most people would have opted for an extended Hawaiian vacation, right? Then again, I've always marched to the beat of a different drummer. I had just proven myself a true glutton for punishment. I almost wish that someone had forced me at gunpoint to buy a plane ticket to some far off destination for a real vacation. Unfortunately my friends were too merciful to do that to me. Instead I spent the fall studying for the graduate school entrance exams. Oh, and I still worked my full time job too.
In early 1998 I took the computerized GMAT exam at a San Francisco testing center. Boy, have things changed since I took the SATs in the 80s I knew my score leaving the exam that day. I did not know, however, my essay score, which would be manually graded. l got the notification in the mail a few weeks later that I received a near-perfect score on the essay. I was elated! I had been through neuropsychological testing (at my request) because I did not want any surprises as I applied for graduate school, say, how to solve certain types of math problems, spell, etc. This was reassurance that my cognitive abilities were intact and I could still function reasonably well in a testing situation. My scores were high enough to get me into the program I wanted. Soon afterwards I submitted my completed application to San Francisco State University's MBA program. Life went on after I finished graduate school in 2001; my scans were being done annually now and all had been clear.
I went to my July 5, 2005 scan in a fairly good mood it was a day off work, for starters. Then Dr. Prados stumbled as he broke the news to me: 'there is a spot at the edge of the tumor cavity. It's too small to warrant surgery, and a PET Scan wouldn't have picked it up, but it's a significant enough change that we know it's back. I was paralyzed and devastated to say the least. This was my fifth scan being done on an annual basis, and I had naturally expected that it would be clear. I was also eight years out of the Temodar clinical trial. He assured me that he would treat this aggressively and told me that I would be starting chemotherapy the following week. We discussed the treatment options (clinical trials) available at that point before we had to resort to our old standby, Temodar. I burst into tears as he hugged me neither of us had expected such bad news. At least they caught it early enough, unlike with my original diagnosis, where I was given perhaps a matter of weeks or months to live. Dr. Prados took me next door to wait for the nurse to start the paperwork for my chemotherapy.
It was quite a scene as I called my realtor on my cell phone while I waited for the neuro-oncology nurse. Annaliese answered and I blubbered at her through my tears that my cancer had come back. There was no way for me to stop this process now the loan was going to fund. Happy Home Ownership to me! I just got myself into a few hundred thousand dollars of debt, had to pack an apartment, continue to work my full time job, and was starting chemotherapy the following week! Anything else you'd like me to do while I'm at it, God?
I enrolled in another clinical trial, Poly ICLC, an immune response booster consisting of self-administered injections. My MRI in September showed no change in the tumor. Stability was a good thing, but by December the tumor had progressed (I now had tumor twins!) and Dr. Prados stopped my involvement in the trial. He put me back on Temodar to stabilize the tumor as we explored other options.
In March 2006, right around my birthday, Dr. Prados offered me a clinical trial with a combination of Temodar and an experimental drug, SAHA. I was definitely more than willing to participate if it involved my old friend Temozolomide! The summer of 2006 ended with the best news yet: my scan showed that both tumors were gone! Of course I had to treat chemotherapy as I would an antibiotic: take it until the drug is gone, not just until I feel better. I still had five more months of the clinical trial left. I finished the Temodar/SAHA trial in March 2007 and am now on 6-month MRIs. I am a bit skittish about returning to annual scans as I have now been through this three times. UCSF follows up with me every few months to ensure that rigor mortis has not set in and I'm doing okay.
My next MRI is set for Monday February 28, 2011. I am hoping for good news and will keep you posted!
Update: March 31, 2011:
It turns out that there was a (new) spot on the 2/28/2011 scan, and it was believed to be a blood vessel. We do not know why it would suddenly enhance, and my oncologist has reviewed my scans as far back as 2008 to see if anything had shown up before. It hadn't.
We decided to repeat the scan on March 28th as a precaution and to make sure it wasn't something with perhaps aberrant timing of the dye catching the blood vessel. Monday's scan shows a second spot on the opposite side of the tumor cavity. The first one has not grown but is still there. Tomorrow, April 1st, Victor Levin will present my case to the Tumor Board in Redwood City, CA to determine the best course of treatment. This officially marks my 4th battle with the disease...
Update: April 29, 2011:
The meeting with the neurosurgeon, Dr. Sheridan, went very well today and I left it far more optimistic than when I came in. Dr. Sheridan was very forthcoming in presenting my treatment options to me, including surgery. He also introduced the possibility of the changes in my scans being related to my previous surgeries and therapies, and not necessarily recurrent malignancy. This was the first time I'd heard that brought up as a possibility. He said we will not know until the pathology comes back, and if there are no malignant cells we won't really know what it is. We are not dismissing the idea of it being actual grade 3 recurrence, but this was the first time I had heard anyone on my care team assert that there is a chance it might not be.
I am scheduled for preoperative appointments on May 27th and surgery will be done on May 31st. He will be resecting the remainder of the right temporal lobe but has advised me that the risks of the surgery include the risk of stroke and possible loss of additional peripheral vision. I have only lost the upper left quadrant, which does not at all affect my daily activities; it simply means I do not play sports where there are balls flying above my head, like volleyball. The concern is that I might lose some lower within my field of vision. That of course may affect my driving.
I am praying hard that perhaps all this is just treatment-related changes. I am hopeful but guardedly cautious. Dr. Sheridan said we don't know yet if I will need radiation and chemo afterwards. We will see following surgery.
Santa Prados, slip some chemo under the tree for me
I’ve been a good guinea pig.
Santa Prados, hurry down the chimney tonight
Santa Prados, a 10:30 MRI too...in AC-05
I’ll wait there for the tech.
Santa Prados, hurry down the chimney tonight
Think of all the trials I've missed
For Temozolomide with a SAHA twist!
I really do believe in you
Let's see if this chemo will work for me!
Santa Prados, some bonus frequent scanner miles
For every five I've had six scans this year!
Santa Prados, hurry down the chimney tonight
Santa Prados, one little thing I really do need are shares
Of both Merck and Schering Plough stock!
Santa Prados, hurry down the chimney tonight
Santa Prados, fill my stocking with some lab slips
For Bilirubin, Neutrophils and Hematocrit too!
Santa Prados, hurry down the chimney tonight
Come and trim my Christmas tree
With bottles from the Inpatient Pharmacy!
I really do believe in you
Let’s see if this chemo will work for me
Santa Prados - forgot to mention one little thing - a receipt
For the co-pay I paid to sing you this song!
Santa Prados, hurry down the chimney tonight!
I came home from the hospital a week after surgery, on June 8th. I was able to walk, etc. although I woke up from surgery with horrifically violent headaches (I understand those were caused by blood hitting and agitating the spinal column). The day after I came home I completely lost my ability to keep my head up, or sit up, let alone stand and walk. I wound up back at Kaiser Redwood City for 10 days before I was discharged to a rehab/skilled nursing facility here in Santa Rosa. I spent 5 weeks there, regaining my strength to walk again. It took until about the 3rd week before I made any notable improvement. By week 4 I was able to stand up and walk although my legs were very shaky. I had wonderful physical and occupational therapists who made sure I got up and moved around.
Within a few days of coming home I developed nerve pain and neuropathy in my left side, apparently due to the surgery. I am now on medication for it, as well as chemotherapy as a preventative measure (my old friend Temodar is with me for a total of 6 months, August through January).
I was home for a week and began having awful stomach aches one weekend. I went to the ER upon recommendation of the advice nurse, was admitted that night, and spent 6 days in the hospital to have my gall bladder out. I wanted to ask God if there were any other body parts that needed to be removed - speak now or forever hold your peace!
I just finished cycle 2 of Temodar on September 21st...I see my neuro-oncologist on October 14th following an MRI. Provide that my blood work is still good he will prescribe dose #3. My platelets dropped from 229 in August to 129 in September, and that was only after one cycle. Dr. Liu was willing to do the second cycle because the platelet count was still above 100. I am hoping it holds up for the next dose.
I'll know more after my blood work and MRI in October.
I can't believe it has been six months! I have completed 6 cycles of Temodar and start my 7th, tomorrow on February 2nd. Unfortunately I had an ER visit on January 9th, prompted by a full day of unshakeable dizziness, balance issues and a general malaise. After walking around with a friend and with my symptoms worsening, I realized that it might be best if she take me to the ER. A CT scan and blood work all came back within normal limits. My neuro-oncologist suggested that it may be the chemotherapy, as he has had petients on Temodar who experienced dizziness. I had finished 4 nights of Temodar and had one more for the cycle. We then decided to conduct my MRI a week earlier than scheduled to ensure there had been no major changes. He did advise me to discontinue the Temodar if I experience this again.
My recent MRI showed no change from mid-December to late January, but there was a significant difference between October and January. The spot we are watching had noticeably shrunken and enhancement was greatly reduced. We will see what happens with the next scan later in March. I am still battling nerve pain, but I recently started a low dose of Decadron to help. The pain itself has shown some improvement.
The good news is that I am finally taking the trip of my dreams! I leave for 8 days in London in late February. I will be spending my birthday there too! Can't wait to see a drummer friend of mine play at a London jazz club. I had planned this trip earlier in February under the guise that I would be done with a 6-month chemo regimen. After I had already purchased my ticket, Dr. Liu advocated that we complete 12 full months of Temodar instead of 6. Since every chemo regimen I have previously completed lasted twelve months each, I was willing to continue on. The trip is now my mid-chemo and birthday celebration.
I am also still working on my book, continuing to compile and verify resources. I will likely ready to publish by early fall, provided all goes well and I finish Temodar as planned. 17 years this year...
I had MRI #63 in June and it was again stable; we are probably just looking at scar tissue and post-surgical changes. I am officially done with chemotherapy treatment. I have retained my crown as the "Queen of Temozolomide"!
For the first time in my 17-year battle, I feel like I'm really done and not waiting for the other shoe to drop...AGAIN. I am working with the Department of Rehabilitation to gradually move myself back into the workforce. It will be a process but I am not sweating it. For now I am enjoying my first summer vacation since I was 15, and next month I am flying to PA for a big family reunion. 2012 is the best year I've had in a while, especially in light of my two-month "hospital staycation" in the summer of 2011 following my 3rd brain surgery.
2013 marks 18 years out of my diagnosis of a Grade III Oligoastrocytoma. My Facebook profile specifies my occupation as "Professional Survivor and Reigning Queen of Temozolomide". I can't believe I'm still counting, but MRI #66 is coming up in late February. They are now every three months instead of two months apart. Yay for progress! My scans have all been improved or stable/clear since my third craniotomy in 2011. My neurosurgeon essentially "threw out the baby with the bath water" by removing the entire right temporal lobe. Removing the tumor AND its surrounding playground seems to have worked quite well. My last round of Temodar was actually in March 2012, two weeks after I returned from my London vacation, although I was "officially" released from further treatment in June 2012. The only longstanding issues I have had since this last craniotomy and my chemotherapy are the nerve pain affecting the left half of my body, and the deep brain stroke that showed up on my April 2012 MRI. I was completely unaware that I had stroked until my neuro-oncologist and I reviewed the scan. I realized then that I had likely stroked over the previous weekend! Two days before my appointment, my nerve pain became inexplicably and severly exascerbated and I felt awful. I even missed a concert for which I had already purchased tickets. The band I was going to see had performed the night of my brain surgery in 2011 and for two nights afterward, so I had already missed them before. My friends know that in order for me to miss a concert I must really be feeling poorly. Thankfully, we have now found a medication to which I am not allergic that controls the nerve pain, AND my band is coming back in April 2013 to Oakland.
I am feeling healthy these days and am working through the Department of Rehabilitation to get myself very slowly back into the workforce. I am changing career directions and will soon start studies for a certification in technical writing. I am also continuing to write a book about long-term BT survivorship. One of the things I hope to do is to ensure that I have a fairly comprehensive resource section for repeat patients/survivors; I have found that the issues I face now (as well as the assistance I seek) are far different than when I was newly diagnosed. Additionally, I think there are too many things that doctors do not tell you, because they frankly do not expect you to be around this long! My life's purpose is now to aggravate as many statisticians as I can just by staying alive.
I recently learned that my tumor has returned (again), making this my 5th battle with it in 18 years. I finished chemotherapy (Temodar) in March 2012 and, since my latest recurrence happened 11 months after I finished chemo, Temodar is no longer an option for me. I VERY reluctantly relinquish my crown as the "Reigning Queen of Temozolomide"! I will say, though, that despite multiple recurrences, I have received nearly 17 years of additional survival out of Temodar. For that I am extremely grateful. Take THAT Dr. Levin! *;) winking
I am due to have CyberKnife treatment this Thursday, March 14th to zap the pea-sized tumor that has reappeared. I had several preparation appointments last week, spending my 44th birthday on March 6th with the neurosurgeon, of all things. On the 7th, I met the radiation oncologist and had both a CT and special MRI. Radiation oncology will overlap the two images to program the CyberKnife to precisely target the tumor. Last year I spent my birthday in London shopping at Harrods. This year it was spent with a neurosurgeon. How strange is that?
I won't know for a while how effective the treatment is because of the issue of what appears on the MRI. It may be hard to differentiate for a while between tumor growth and radiation necrosis from the CyberKnife. Praying hard for good results.
Well, it's been an interesting time. I had my second recurrence of 2013 in October, making this my 6th battle (5th recurrence) since my original diagnosis in1995. The CyberKnife radiosurgery I had in March, 2013 did not work. My September MRI was inconclusive, so I had MRI #70 in October, which showed a doubling in size of the enhanced area since September. My neuro-oncologist was then 100% certain that we were indeed looking at another recurrence. He started me on Avastin therapy the next day. I have now had three courses of it, and my December MRI showed significant shrinkage (1 full CM!) of my tumor. I had Avastin again on Christmas Eve morning. That MRI result was the best Christmas present for which I could ask.
My next Avastin treatment is on January 14th, with an MRI to follow in February. Praying hard that Avastin will do the trick and kills off my "naughty child" that keeps coming back to roost where it doesn't belong!
Along with all of the treatments, I am now selling my condo because I can no longer navigate the very steep steps outside, and my nerve pain acts up when I walk downstairs. I am moving to a single-story home temporarily until I get permanent housing. The almost 9 years I have owned my condo have been challenging for a number of reasons, but with my mobility reduced, I have decided to sell my home and move on to a more pleasant and safer situation. 2014 will be a good year with some healthy changes for me.
My August, 2014 MRI (#77!) showed my tumor growing again. Since I had 2 thalamic deep-brain strokes (in May and June) likely due to Avastin, we decided to give Temodar another try. After one cycle, my September MRI (#78) showed some slight improvement. I just finished cycle two so I have a break until early October. My next scan will be in November now that we know the Temodar is having a positive effect.
My oncologist AND my family are concerned about my being on the road behind the wheel of a car since I have stroked multiple times. So, at the ripe old age of 45, I have now given up driving and last night sold my car. It is hard to watch facets of my independence disappear one by one.
MRI number 80 on December 30th showed my naughty child as being stable, which for me was a bit worrisome, thinking that perhaps the effectiveness of the Temodar after all these years might be waning. There was some noted enhancement in a couple of spots, which could well be tissue necrosis. MRI number 81 will take place on February 24th. A few days later, I am moving to Colorado to be near family at Dr. Lou's urging. He is concerned, given the deep brain stroke I had last May and the level of tumor recurrence since the stroke, that I should be closer to family, for the sake of my future.