As far as medical tests go, the sleep study was a snap. I was hooked up to about four-hundred belts, leads, and brain wave sensors, had some probes stuck up my nose and then told to go to sleep. Which I did.
At 4:45 AM, I was jostled awake, unprobed and unbelted, and unceremoniously kicked out with my slippers and pillows to wait on the street corner for Jeff to arrive. The medical equivalent of the walk of shame. The sleep tech had a great time last night, but now had an early meeting to get to. She'd call me! I still have not heard from her, going on five days now. (Do you think there is someone else? I KNEW I should not have fallen asleep on the first study, but I just felt so COMFORTABLE around her. We had a real connection).
This morning, I scheduled my six-month brain MRI at Hopkins for a date to be announced later. I was on the fence about whether to do it before the holidays or after. Given the flu going around, I am not all that psyched about heading to the hospital. And after recent complications I had due to a simple IV, my needle phobia has spiked to a previously unforeseen level of fear. Wild horses may need to be involved for this pending test.
Assuming mustangs are not permitted in the hospital, I will likely pop some Vitamin Z (Xanax) before IV placement. Last time, I took the higher dose and Jeff had to practically fling me over his shoulder to get me out of there. I was having the BEST time! The upside was that I was not worried about that IV, not one little bit. I may or may not have given the IV tech my phone number and told him to call me at home later and I'd make dinner for him and his wife. I get friendly when drugged.
I've had a down sort of week thinking about scheduling this MRI and the trip to the hospital, waiting for phone calls, vetting opinions. I've found that the more specialized the medical speciality, the less likely you are to find two doctors who agree. One wants to cut off the offending organ, the other wants you to take some multivitamins and do yoga.
It is exhausting to try to advocate for yourself as a patient in that scenario and make the "right" decisions, when most times no clear-cut "right" answer exists. As someone who spent almost twenty years in school (math majors out there: I am counting studying for the Bar, anyone who has done it knows that counts), I *like* right answers. Especially when the wrong answers have such potentially devastating consequences.
I am wallowing a little. OK, a lot. I was first diagnosed on November 16th and the thought of that date approaching is making me ... something. I cannot even put my finger on what it is. Complicated things. Full of loss, regret for things I took for granted "before", angry, grateful to still be here, frustrated. I know wallowing is not attractive, and I do not do it often. But when I do, I commit. Wallow hard or go home.
The brain surgeon I saw several months ago had only seen one other tumor like mine. ONE. (She was still alive, too, after two years). And he see twenty tumors a week, does hundreds of brain surgeries a year. It makes it hard to know what the typical path is, what the right treatment is and of course, what the prognosis is. What is that quote in the medical field for low-hope cases?: "You are a statistic of one." It is extremely lonely when you actually are a statistic of one (or two).
When I was first diagnosed and hit the computer for manic research, I was astounded by how cruel this disease is. You have surgery and if the surgery goes "well", in brain surgery speak that means it does not kill you, you likely still end up with severe deficits. And then the tumor has a high likelihood of growing back, more surgery ... more risk, more deficits.
A year ago, I was in a much different mindset. I wanted this thing OUT of my brain, no matter the cost. If the surgery killed me, so be it. I could not live with watching and waiting ... hoping for what? Wondering if every headache is a brain bleed or just a headache (sometimes it is just a headache). Jeff pointed out that there was not a surgeon we'd seen who would do it, I countered that we could find someone. One surgeon to agree to a risky surgery. Just one risk-taker was all we needed, we'd travel and have it done. He gently reminded me that the outcome was 50-50, meaning we'd been quoted that rate of survival for the surgery. A coin toss.
And the risk for coming out of it blind, paralyzed, or brain dead was even higher. I replied, "I'd sign a DNR and you would pull the plug if my brain did not make it. That is what plugs are for." (I have never been one to mince words). He looked horrified and conversation was over.
I thought I would give it six more months and then - maybe - find someone to do the surgery. I did not know how I could be strong for a year. I did know how I could keep going knowing that there was something growing inside of me that could kill me, at any point. I did not think I could be that strong ... I did not know how I could get up in the morning, every day, and keep moving. How do people do this? That was last year.
Now I am switching gears a little, sorry for the whiplash. I have been reading the website below for a long time, since I was first diagnosed. There is not a lot of information out there about patients' experiences with adult ependymoma (of which I likely have a subcategory - the subependymoma). This website is the one I have found about a patent's experience with this particular type of tumor.
Here is the link. I quote below from several sections of her website, the italicized text below are her words, not mine. I encourage you to take a look at her website and read through it. This woman is the very definition of strength. Her story resonated with me (for obvious reasons). If you are inclined to pray, add her name to your prayer list. If you are inclined to send encouraging email, her email is on her site.
http://www.adultependymomabraintumor.com/
Welcome to my website! My name is Carol Welsh and I'm a nine-year survivor of an adult ependymoma, a rare brain tumor. I've had three brain surgeries, a placement of a shunt, a course of radiation and oral chemotherapy called Temodar which did not stop the growth of my tumor. On March 22, 2005 I started a different "heavy duty" chemotherapy regimen, a combination of IV carboplatin and IV etoposide (VP-16). I completed three more rounds of the chemo (April 12-14, May 7-9 and May 28-30) to buy some time while I investigated the possibility of a third surgery, which I eventually had on December 13, 2005. With the recurrent tumor I had headaches, balance problems and severe double vision. In fact, I had so many physical complaints that I was overwhelmed. For over eleven months I took a daily dose of Decadron which has its pros and cons - it is a vital steroid to control edema (swelling) around a brain tumor but it has horrible side effects. Since my third surgery I have struggled to both accept and overcome my deficits.
According to the American Brain Tumor Association and the National Brain Tumor Society, ependymomas are glial tumors which arise from ependymal cells which line the ventricles (spinal fluid spaces) of the brain and the center of the spinal cord. Ependymomas make up 3 - 6% of the estimated 52,236 primary brain tumors diagnosed in the United States in 2008. Ependymomas occur at the peak ages of 5 and again at 34. While they are rare in adults, ependymomas are the third most common brain tumor in children. Most occur in the posterior fossa (the lower back portion of the brain) and of these, nearly all occur in the fourth ventricle. A 2002 eMedicine report states 5-year survival rates of 76% for adults and a dismal 14% for children. According to the Chicago Institute of Neurosurgery, about 10% of brain ependymomas will spread to the spinal cord through the cerebro-spinal fluid.
Ependymomas are classified in four divisions:
1. ependymoma (the general term for the tumor)
2. anaplastic ependymoma (more aggressively growing cells)
3. myxopapillary ependymoma (occurs more often in the spinal cord)
4. subependymoma (grows slower than a typical ependymoma)
Ependymomas are graded using the World Health Organization (WHO) standard - grades I and II are considered benign and grades III and IV are considered malignant or "anaplastic." However, benign ependymomas can be anything but benign. "Low grade" is a more descriptive term than "benign." As space-occupying lesions in an extremely limited space, often they are malignant by location, and sometimes they can recur, perhaps not as fast as might be the case with anaplastic ependymoma, but they can recur nonetheless. Mine recurred the first time after three years. The location of a brain ependymoma can be devastating. Think real estate as in, "location, location, location." Where the tumor is and the skill of the neurosurgeon in attempting to remove it are most important. Some people are wrecked from the surgery to try to remove an ependymoma that might be attached to one or more cranial nerves on the brainstem. The cranial nerves are twelve pairs of nerves that are the critical sources of a person's ability to breathe, smell, see, chew, taste, move and hear. My surgeries resulted in several deficits because of the "insult" to some of these nerves. Fortunately, I have regained these abilities at least partially. Some patients, though, never regain some vital functions, such as their swallowing, breathing, walking or speaking ability.
On December 19, 2008, I had sudden respiratory arrest. Fortunately, I was in the ER already, because I had gained 20 pounds in about a month and had grown increasingly confused, exhausted and was hallucinating at night. The CO2 level in my arterial blood was a whopping 75 and it's a miracle that I wasn't in a coma. I was intubated, ventilated, and ultimately ended up with a tracheostomy. It appears that damage to my respiratory center in my brain stem from the 3rd surgery and/or the radiation caused chronic central sleep apnea and/or hypoventilation, which is shallow breathing at night. My right heart failed because of pulmonary hyptertension caused by repeatedly low oxygen levels at night.
I am presented with two nightly solutions- a mask with bilevel ventilation support or a trach with ventilation support. I have several head and scalp issues related to my tumor, plus a not-so-subtle tendency toward claustrophobia, that make the mask option more complicated than it might seem initially. Meanwhile, I can barely withstand all the physical problems I face every minute. My breathing crisis is a prime example of the sinister nature of brain tumors - and the key factor of tumor location and resulting damage to the most sensitive area of the brain, the brain stem.
October 30, 2009 Update:
Oops - today I spent some productive time in an ambulance. A sinister piece of chicken salad got me during my lunch! Fortunately immediately I took my trach cap off so I could at least get enough air and finally dislodged the devil just as we rounded the corner into the hospital. I tried everything at home - swallowing some water, coughing, hard swallows - it just wouldn't budge and it was uncomfortable. I was so grateful for the trach (I got air through the tube) and grateful to the EMT squad - and to Mom for calling 911 for me. It was scary to be sure, especially when I detected the telltale plastic-y smell of the oxygen in my nose - it reminded me of all my times in the hospital and I felt that fear I have when I'm there. The exciting thing is that one of the paramedics suggested I try and breathe slower, and I consciously tried my diaphragmatic breathing techniques - and they worked! Thank you Robi for teaching me this!
I am still stuck stuck stuck - the Bipap is not working for me and with the CO2 in my arterial blood gas creeping up - it was 58 on 10/15/09- I don't know how long I can wait. Meanwhile, I'm feeling lower and lower, weaker and weaker. I don't really know how I'm making it. Thanks for everyone's help.
I read this three times, and then a fourth. And cried. Selfishly, as much for me as for her. And then I made a donation to the American Brain Tumor Association in Carol W's name. If you have read all the way to the bottom, I encourage you to do something in the name of someone else today. Pay the toll, send a card, make a donation ... or just smile at someone you pass. Whatever. One thing for someone else. It will make you feel good. Much better than wallowing.
