February 26, 2020
"Where does the time go?" After a month off in October to give my skin a break from the chemo rash, I'm in Month 9 of the daily lapatinib / Temodar protocol. Honestly I don't know how I will cope with all the deficits from the treatments over the years, not to mention what the tumors could be doing to make me feel so impaired. Things seem to be very difficult - ugh! Pain in my trach area is off the charts - same with my lower back. Dr Phillips reminded me that I'm ingesting poison and it's not surprising that I'm feeling so beleaguered. Sigh...
MRI results - "Good/Mixed" - Awaiting a group consensus. Seeing Dr Gilbert on March 3 at NIH.
Welcome to my website! My name is Carol Welsh and I'm a brain tumor survivor of over 20 years. At age 30 I was diagnosed with adult ependymoma in the posterior fossa of my brain in April 2000. It spread to my spine in 2014. On October 17, 2014, I was operated on for a tumor at L1 and then on October 28, a tumor at T6-9. The pathology on both was Grade III Ependymoma. Also on October 28th I had my existing trach revised so I could begin using a ventilator at night to help with my breathing, and a few days later I had a PEG tube inserted in my stomach since I lost my swallow, and needed to be tube-fed. I had the PEG tube removed in April 2015 - a major milestone.
My ependymoma has been relentless.
In the winter of 2016, an MRI revealed five new spinal tumors. From May to June of 2016, I received 36 radiation treatments to my mid and lower spine via proton beam at Hampton University Proton Therapy Institute (HUPTI). Plan was to pulverize the tumors and also bathe the spinal cord to help ward off future recurrences. I later did proton therapy on my cervical spine at Georgetown University Hospital in Washington, DC.
During the past 20 years wrestling with the brain tumor, I've had three brain surgeries, one gamma knife radiosurgery, a placement of a shunt, a course of IMRT 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. I have struggled to accept my deficits while also trying to overcome them through therapy, will and hope.
On December 19, 2008, I had sudden respiratory arrest. Fortunately, I was in the ER already, because I had gained 10 pounds in about a month and had grown increasingly confused, exhausted and was hallucinating at night. The CO2 level in my arterial blood was 75, climbed as high as 124 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 complex sleep apnea and chronic hypoventilation, which is shallow breathing at night. My right heart failed because of pulmonary hyptertension caused by repeatedly low oxygen levels at night. I was, and still am, hypercapneic which means I have high levels of CO2 in my blood. Here's a good article which explains both obstructive and central sleep apnea: http://www.washingtonpost.com/wp-dyn/content/article/2009/06/12/AR2009061203267.html. My throat is so collapsed during sleep (and during the day) that I can't blast through the tissue with a CPAP machine. With the trach, you bypass this nerve-damaged tissue - but at a price (having a hole in your neck). 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.
These years I can barely withstand all the physical problems I face every minute: from double vision, headaches, balance trouble, legs that feel and respond like cooked pasta, trach pain, abdominal pains, swallowing difficulties to sheer exhaustion and most troubling, a sense that I am removed from the world around me and overwhelmed.
I've created this site to help other patients and caregivers learn about adult ependymoma and to give my story as one example. Besides the details about an ependymoma itself, I hope my website describes "the complete change in my lifestyle" -- a sentiment first articulated to me by a fellow ependymoma survivor, Kathy (Claremore, OK).
Ependymomas are classified in four divisions:
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.
Like many patients, I've always wondered how long my ependymoma was in my body before it caused any problems. I asked Dr. Fine this and he wrote, "It's impossible to say how long you had the tumor. The fact of the matter is that this is a very slow growing tumor so it's conceivable that you had the tumor for years or even decades. Just impossible to know."
[In July 2013 a biopsy of a lump I found in my right breast revealed DCIS, known as "Stage Zero Breast Cancer." I had it removed over two operations, including plastic surgery on my left breast, and thankfully there was no sign of invasive cancer. Happily, radiation was not indicated. I decided against taking an "insurance" regimen of Tamoxifen. I highly recommend my network of breast cancer specialists, including genetics counselors, in the DC/VA area if anyone ever would like my contact list!]