All the pain I can bear

On the morning of October 27, 2010, I awoke in my bed, screaming on the top of my lungs, waking my mother, who rushed to my bedside.
It is the worst pain of my life on the left side of my body, a pain I never had felt before. The pain feels like someone took a rusty razor blade and shredded my muscles on the left arm, abdomen, and left leg. The pain in my joints feels like someone took a nail gun to my joints (shoulder, elbow, hip, knee, etc.).
I could hardly move. The touch of the bed cover on my left side felt like fire. Why do I have this burning pain? I could barely breath. What happened to my body? It is not that I had never experienced any pain in my life. I had been through a lot as a child and an adolescent:

• Second and third degree burns over 100 % of my face that I sustained during a fire explosion when I was a 13 year old. 
• A bicycling accident, resulting in about 350 stones imbedded in my face. It took my mother, who was acting as a nurse on that Sunday and the surgeon several hours to remove all they could. I still have a few left and every few years one works its way out). My father was no use once he had carried me to the hospital, because he fainted at the sight of the blood dripping from all over my face.
• And a dislocated shoulder, ripped tendons and broken ribs in a skiing accident in college all pale in comparison to this pain on the left side.

After the seizure on October 5, 2010, I had a subsequent series of MRI sessions that showed a gapping hole in my back, 1cm high and almost 3cm across one of the major bones (L4) in my spine, as well as a compression and deformation of the disks by over 1 cm both above and below L4. However, nothing else: apparently no new lesions or any cancer activity in the brain, fortunately no apparent damage anywhere else.
For two weeks, I lie in bed:
Too weak to get up, sleeping 22-23 hours/day - just getting to the toilet is a painful undertaking.
My mother feeds me 1-2 spoonful at bedside every day – if I eat a bit more, I throw up. The pain in the back is palatable.
My weight drops from 178lbs in late August to ~140 lbs by ~ Oct 20th (79.5 kg and 63.5 kg respectively). Any chemotherapy as well as physical and occupational therapy is on hold.
Then an urgent message from my neuro-oncologist at UCSF: ordering me to start taking chemotherapy for 5 days at a high dose from 10/21 to 10/25, and to come to UCSF for another round of vaccine on 10/26.
I dutifully take the temodar. My father sent an email to my neuro oncologists, and Andy Parsa - my neurosurgeon at UCSF, pleading to reconsider the timing of the vaccine, because of a strong potential collision between temodar (an immunosuppressant, as it inhibits the division of not only cancer cells, but also other cells like those of the immune system), and the vaccine, which is an immune booster. Nobody from UCSF replied. My UCSF neuro-oncologist goes on a vacation in Italy to Florence and Rome, which she later describes as splendid.



As a result, I receive the vaccine on the day after the last dose of temodar for this cycle (October 26 2010). Then on October 27 – barely 12hours after the vaccine injection – the onset of my severe pain.
Now the thing with temodar is that its metabolites accumulate in the body, so that the side effects are strongest in days 4-8 after starting the temodar, just when I got the vaccine.

The trigger was the collision of the temodar and the vaccine.

Dr. Rose Lai from Columbia Univ. finally diagnosed my pain as Reflex Sympathetic Dystrophy (RSD), also called Complex Regional Pain Syndrome (CRPS), a disease that affects the sympathetic peripheral nervous system. It is a disease, which is both unpredictable and difficult to treat.
The problem is that the pain itself is only the symptom of the underlying cause, which in itself is a viscous feedback of phantom nerve sympathetic nerve pain, because of course nobody cut me up. The pain jumps from the major muscles to major joints and back. In the first few weeks, this pain persists for 24 hours a day.
The trigger was the collision of the temodar and the vaccine.
For weeks, we try to get the help of UCSF’s neuro-oncology department for my excruciating pain.
In late November, we finally meet my UCSF neuro-oncologists. Their only solution is to prescribe a series of really ugly opiate painkillers like hydrocodone and tramadrol with terrible side effects, like vomiting, severe constipation, nausea, unbearable tiredness and weakness, just to name a few. However, there is no effort to help me with expert guidance (i.e. pain specialists). As we find out later, UCSF has a pain clinic, which has world experts in the treatment of RSD. It is typical of some institutions like UCSF to neglect patient care, and when problems arise not to search for experts in their own institutions. So much for our expectation of team UCSF – very disappointing.
The UCSF neuro-oncologists defended themselves claiming that they had never heard of RSD, but in an unguarded moment, one of them let it slip that my symptoms did not match those of RSD.  Well if you do not know RSD, then how can you know the symptoms? Furthermore, it is completely immaterial what they know about RSD. The fact is that they do not offer any solutions or refer me to pain specialists. Thus, I suffered for almost two months without effective pain treatment.

It was again my dear Rose Lai from Colombia, who referred me to the Stanford Pain clinic (under the direction of Dr. Sean Mackey, where I have received a series of treatments since December. These professionals at Stanford got their act together and were treating both the symptoms (the unbearable pain) and the underlying disease quite holistically, through a combination of ganglion blocks – for both stellate and lumbar ganglions, located in the neck and the lumbar regions, respectively – and excellent physical and occupational therapy, among others. Ganglions are nerve cell masses and essentially the junction between the autonomic nerves of the central nervous system, and the autonomic peripheral nerves.
A ganglion block is a surgical procedure, where the physicians inject about 10or 20ml of a pharmaceutical concoction, consisting of a ganglion blocker, an anesthetic (lidocaine), and a steroid directly into the vicinity of the targeted ganglions. The good doctors are using thick needles of various lengths, and various guidance mechanisms (ultrasound, x-rays, or old-fashioned deep knowledge of the human spine) to guide these needles (they are up to 20cm in length). After the first procedure, I insisted that they do not use an optional sedative, so I was watching them with detached interest poke me in the neck and into the back. The effect in each of the six or so ganglion blocks was instantaneous relief, as if someone turned off a switch. The pain relief tends to wear off in increasing intervals, at first one and later on for three weeks. Through a still continuing exercise regime the pain has become manageable with occasional unbearable flare-ups that I treat with non-opiate painkillers with no notable side effects, as well as acupuncture and meditation.
I really want to praise the Stanford doctors, nurses and especially the therapists, and getting cross referrals within Stanford and associated programs is the best and least painful my parents and I have experienced.

Now, in the middle of July 2011, almost nine months after the onset of the RSD, I still get the occasional flare-up, but mostly I can manage. However, there are always small setbacks with twisted ankles, and twisted knees (falling out of bed in the middle of the night no less).

The worst part is that my physical rehabilitation has been set back by about a year: Before the seizure, which was caused by my UCSF oncologist, as I like to remind everyone, I had hiked for 8 + hours without pain and without the help of a cane. Now I have to rely on my cane.