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Brain Tumor Survivor: Kathy K.

Kathy

Last update 2/16/2013

In July, 1986, my mind "turned off". Somehow, I continued to work, though I don't know how, Did wonderful things, like lose the car in the parking garage, get lost in the car. I was a teaching nurse in a large clinic / hospital. It is strange that no one noticed a problem --other than "veering" when I walked.

I vomited a lot, but privately, in rest rooms. I ate crushed ice and crackers at work, trying to settle my stomach. Over a period of months, I lost 50 pounds. I saw many doctors, but even a history of melanoma, which likes to go to the brain, did not prompt them to check my head.

Every time a test showed a normal stomach and did not explain the vomiting, there was one more bit of "proof" that this was "all in my head." By mid- October, I was signed into the psychiatric unit of the hospital I worked in, still off-balance, still vomiting, still falling down. Even a siezure in there was misinterpreted through the psychiatric view.

I spent 2 weeks in there before they finally scanned my head and found a very big tumor "occupying one third of the posteror fossa" plus a lot of edema and hydrocephalus. (The tumor was mainly cerebellar, 4th ventricle area.)

There was a quick transfer from Psychiatry to Neurosurgery, from being responsible for washing my own clothes, etc, to complete bed rest with I.V.Decadron. They found the tumor on a Tuesday and scheduled surgery on that Friday, telling my family they might have to do it sooner as an emergency, but they wanted to try to get the swelling down first. I have a hole in my skull that they made, preparing for a shunt that was not puit in during that surgery.

After that surgery, I can remember being told that it was "meningioma ... benign ... slow-growing ... wouldn't come back." Well, it was atypical (grade II), not benign; and it came back, malignant, in 4 years.

That one was found when I was hospitalized (in a different hospital, different doctors) for another reason, and my head was scanned the morning after admission. This was 8 months after a "clean" MRI.

After its removal, I had a regular schedule of visits to the neurosurgeon and the neurologist and MRI's every 3 or 6 months for 5 years. On the 6-year MRI, there it was again -- big.-- one year after a clean MRI. So I had a 3rd posterior fossa craniotomy -- incision down the back of the head and neck.

This time the neurosurgeon fixed a hole in the dura with a cadaver patch. After the 2nd surgery , the scar tissue had not knit together properly, leaving a hole through which cerebro-spinal fluid leaked. The 3rd tumor was apparently spread through that hole, so it had to be patched.

What is life like now? In one word, different. Like nothing I had planned. I've lost my nursing job, my marriage, my step-family. But I've gained too. Though I cannot hold a job as a nurse, I can stil share my nursing knowledge with these list members or sometimes in person. The marriage probably would have ended anyway. There is a tremendous amount of support and caring via e-mail on the lists, like the BRAINTMR list. I've been able to attend several Brain Tumor conferences and meet fellow - travelers on this road. I've been amazed at the adulation received when all I've done as a "long term survivor" is stay alive. We might have problems,............................ BUT WE SURVIVE!!!!!



ADDED 4/17/2007

  1. I completely forgot to include the fact that I had radiation treatments in early 1997: 5000 rads (50 grey) in 25 sessions. The radiation was basically ear to ear for a small part of tumor #3 (October,1996) that was "inoperable". It did cause me to lose hair behind my ears, but that has grown back. The hair loss really didn't show, as my other hair covered it. The radiation also "burned" my ear lobes, and I was given a soothing ointment called AQUAFOR for that I had some vomiting though that was probably due to the location of the radiation -- near the brainstem), and I remember being very tired. On the last day, my "graduation", I was given a diploma stating that was entitled to "pampering". .

  2. In January and again in February, 2006, due to hydrocephalus ( "waterhead" -- a buildup of fluid in the ventricles causing pressure on the brain tissue ) I had to have a V-P shunt -- ventriculo-peritoneal, brain-to-belly drainage -- surgically put in and then revised in another surgery. The revision was because the abdominal end of the shunt coiled up and was not draining properly thus causing hydrocephalus again. The development of the hydrocephalus was blamed on the scar tissue from the three craniotomies, plus the radiation, causing a blockage. Now I've had hydrocephalus three times: before the first tumor, before the shunt insertion, and before the shunt revision. I think all that ICP --Increased Intracranial Pressure -- has caused some damage, but not enough to stop me from doing things like writing this . .

  3. Brain-tumor-wise, I'm doing OK. I still have yearly MRI's with contrast to check on the tumor, and , as of November, 2006, it was not back. Apparently the radiation did it's job. I've been told that I'm more at risk now from shunt malfunction than from tumor return. They can check on my re-programmable shunt with a CT scan without the contrast that I'm allergic to, and as of late January, 2007, the shunt is OK. I've outlasted my neurosurgeon, who retired in November, 2006. Since the brain tumors, I've had other cancers: 6 bladder tumors, and two skin cancers diferent from the melanoma I had in 1976. I'm very proud of my CANCER SURVIVOR pin, which I wear daily. My handicapped parking hanger card (I walk with a walker) says "Expiration Date: NONE" -- I'll go with that.

UPDATE 2-10-2011

In July, 2007, I had to have my left kidney removed due to RCC, renal cell carcinoma. Between 1998 and 2004, I had five TURBTs to remove six small TCC , transitional cell carcinoma, bladder tumors. There were two surgeries for BCC, basal cell carcinoma skin cancers, too. I think I need a new body. This one seems to be defective.

As you can see, I'm still here, still "perking". Physically I am managing. My balance is way off because the tumors were cerebellar. I usually use a walker, and I have a power chair to go to the other building where the Dining Room is. But I do live alone, independently in an apartment. I have help for the cleaning, sometimes for laundry and the grocery. That's not bad considering the last 25 years. Mentally, age -- approaching 70 now -- plus the brain damage episodes of increased intracranial pressure, three craniotomies, 25 radiation treatments, shunt surgery and surgical revision, are catching up with me . I still can drive on good days. I have found that the brain works better when I get enough sleep. Being tired means nothing works right.

In 2007 there was also another surgery to treat arthritis in my wrist.

Since the 2007 update, there have been no further brain situations other than shunt adjustments done with a magnet, not surgery. Other physical problem now keep me busy with all the checkups, but even that is tapering off. Hopefully there won't be any more cancers: five kinds, thirteen malignant tumors, is enough.


UPDATE 7-30-12

I had a scare last month when the eye doctor told me to "see the brain doctor" because my eyes were OK. I had an MRI early the next morning and a NS appointment that afternoon, praying that the magnetism of the MRI and that the contrast medium would not injure my solitary kidney. The kidney survived, and I'm OK.

The only other new news is an automobile accident January 27, 2012. I've been in three hospitals and various rehabs ever since. The car was totalled when someone pulled out in front of me, and the surgery to repair my totally broken right foot was on January 28, 2012k. My brain is basically OK except that it was shaken up, and I did have a seizure, I think in March. I'm on Keppra now.


UPDATE 2/16/2013

As a result of my automobile accident at the end of January, 2012, I have been hospitalized ever since. I have been in several different short-term, acute care hospitals and several rehab places. I have been on complete bed rest since the end of January, 2012, and have had all kinds of complications, including pneumonia and a seizure (that even brain tumors and a shunt did not do to my brain, but the accident did..............like I really need something to make my brain function worse!

My life has been different to say the least: nun (twelve years in actual convent), two baccalaureate degrees earned while I was a nun (B.A in Education and B.S. in Nursing), wife (eleven years), step-mother of three, step-grandmother of three, elementary school teacher for three years, RN (staff nurse in two hospitals), and instructor of practical nurses, nurse aides, ward clerks, medical assistants and arthritis patients. I am a cancer survivor, too: five kinds of cancer, fourteen malignant tumors, plus one shunt due to scar tissue from 3 brain surgeries and 25 radiation treatments. I have also had 6 immunotherapy treatments. Sometimes my life has felt like a series of crises, some of them outside myself, like the divorce of my parents after 31 years of marriage. Probably nursing and the training and volunteering as a crisis-line counselor helped me to survive. How do your survive the big things? It is like eating an elephant: one bite at a time!


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Note: My email address changed on 4/17/2007.. use the form below to contact me!
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