--- part 14 --
On Friday December 4, 2015 I had my first dose of IV Kadcyla and once that finished up in pre-op they wheeled me into neurosurgery to have a pediatric Ommaya Reservoir placed in my head. My family and friends were freaking out that I was having surgery and in the hospital again but for me it was what needed to be done -- and probably should have started sooner.
I definately recommend getting the pediatric sized Ommaya if you can swing it, it is much smaller and no one can see it. I do have a scar from the cut into my scalp but you can't tell. Oh, and they don't have to shave your head either, it takes a new surgeon to be willing to do this and you have to push for it -- tell every person on the surgical team that you don't want your hair cut and they can goop you up with vaseline instead. I think their rare concern is with meningitis but I'm healthy and strong so it wasn't an issue for me. Why not cut your hair? I'm of the opinion that anything that helps your body feel stronger, healthier, more normal can only help you to fight cancer better. When we are downtrodden, let them take us from ourselves without thinking about it we aren't as strong. Fight for your body and yourself. Fight to be treated as a person. Have them err on the side of being conservative with your body, not medically, they aren't the same thing. It's about treating the cancer and not messing up your body, or doing the least amount of damage possible.
What can I tell you about the Ommaya Reservoir...
The Ommaya Reservoir is a type of port into the skull and brain, used to deliver chemotherapy agents into the central nervous system. It was developed by Dr Ommaya for use in pediatric patients, some of whom present with cancer types such as leukemia that are likely to spread into the CNS and for which intrathecal therapy may be beneficial. If you watch the start of the documentary "Cancer: The Emperor of All Maladies" the pediatric oncology team is actually discussing placing an Ommaya port into the toddler in the first parts.
The brain has no opening, no easy access points. Over the years neurosurgeons have learned that there is an area on the right brain that has less activity, that is between more critical areas. It is through this area that they place the Ommaya catheter, to position delivery of the drugs deep into the center of the brain where the spinal fluid is generated. They also use it to place shunts and stuff when folks have hydrocephalus or meningitis or brain mets -- but only some kinds.
It did hurt, gave me a headache for a couple of weeks where I had to use hydrocodone and Tylenol. The area that had been injured hurt in my right forebrain and I had an odd pressure behind my right eye -- but it didn't feel the same as the cancer did when it was causing pressure to my eye. Doing movement hurt too -- I guess I proved that your brain really does move around when you are doing activities.
I had to treat myself as if I had a brain injury -- because I really did. I took extra omega-3 and tried to get extra rest but it was a long month. Plus the ketogenic diet I switched to also at the start of December also is known to cause alterations to the sleep pattern. After the first two weeks the pain settled down a lot and now it just feels weird when I get dosed intrathecally.
What I learned from experimenting on myself, with some sage advice from others who have dealt with LM is this:
- drink an extra liter of water on days when you receive IT treatment. You don't want to be dehydrated at all, you are introducing drugs right into the CNS and you want to stave off chemical meningitis
- steroids help reduce headaches and inflammation -- I have not gotten IT steroids so I found that taking 2-4 mg of dexamethasone a few hours before treatment helped tremendously
- extra strength tylenol - I would take 500 mg with the dex, about 2 hours before being treated and I wouldn't get a headache
- boswellia serreta -- I take this every day since surgery last summer. It is commonly used for arthritis but it also help reduce cerebral edema -- chemo messed with my body and caused some subclinical pre-arthritis in my body. I take 600 mg 2-3 times a day and so I include it in my ommaya headache helpers.
What frustrated me to no end was that IT Herceptin is new and not well documented, plus brain mets and LM are completely underresearched. When I tried to tell my neuro-onc what was helping me she instead decided that I was masking symptoms of mets inside (not outside) of my cerebellum and learned not a damn thing from me, the patient. You know, the actual person with a hole in her head and an awful diagnosis. No wonder neuro-oncology is so far behind, I am constantly amazed by how lame they are and it further reinforces to me that I need to be my own advocate because on their own they will try to kill me with the same-old, same-old and the path is littered with corpses to attest to that.
About Your Ommaya Reservoir Placement Surgery for Pediatric Patients
https://www.mskcc.org/cancer-care/patient-education/about-your-ommaya-reser voir-placement-surgery