Cindy has written the continuation of her story, two years later- read below the news of her and her family:
Cindy’s Story - Updated July 11, 2009
When I wrote my story for this website, it was June 2007, and I was undergoing radiation after my second brain surgery. Many things have happened since then, a few bad, but mostly good. I think it’s time for an update!
I finished radiation and the daily chemo pills on June 25, 2007. That was a very long six weeks. I also started eight weeks of outpatient physical therapy before I finished radiation. By doing that and the exercises at home that the therapists showed me, I was gradually able to regain most of the motion in my left arm and leg. I can still tell I’m not as strong on that side, but it’s so much better than it was. When I notice it most is during my tap class. My left ankle and foot just won’t always do what they’re supposed to. But that’s a good excuse… I just tell Jade, our teacher, that I can’t do it! I do try, though, and hopefully I’ll continue to get better.
I finally got a full-time job in February 2008. The secretary at my church was retiring, and I was hired for the position. Seven days of training before she left, and about six weeks after I started, it was Easter! Talk about baptism by fire. I have since made it through two Easters and one Christmas, and I think I’m doing pretty well. The pay isn’t great, but I do have great health insurance, and the pastors and other staff members are wonderful. I couldn’t be in a better place.
In March 2008, after finally getting a job and more or less getting back to normal, I had yet another cancer scare. I was (and still am) having regular follow-up MRIs. My radiation oncologist thought she saw something on the MRI, so she had me do a special one called a spectroscopy. Not covered by insurance, by the way, which I didn’t know at the time. Anyway, after that test, she personally called to tell me that the cancer was back. Needless to say, I totally fell apart. I scheduled an appointment with my surgeon. In the meantime, I had a healing service with a gentleman at my church. I know people have varying opinions about that, and I was somewhat skeptical myself, but all I can say is that I know it worked. It was the most powerful experience of my life.
My parents and I went to see my surgeon, who had seen the spectroscopy images, and he was not at all sure it was cancer! I was not at all surprised. He and my regular oncologist encouraged me to go to Houston to M.D. Anderson Cancer Center, just to get another opinion. I went in April 2008, and the two doctors that I saw there agreed with my surgeon. It could possibly be cancer, but it was definitely not nodular like a tumor, and there no “fingers” coming from it. They said it could be necrosis from the radiation, scar tissue from the surgeries, any number of things.
As of now, I am still having MRIs every three months, but will probably cut back to every six months soon. There have been no changes. In fact, the most recent one shows that the spot in my brain looks a little smaller. I am still taking Temodar, chemo pills specifically for brain cancer, and Kytril, an anti-nausea drug, five nights out of each 28. I’ve been on that regimen for almost 2 years, and will probably continue that for another few years. My new neurologist prescribed different anti-seizures medications, and I’m doing extremely well on that front. I have a seizure maybe once a month, sometimes not that often, and it lasts a few minutes at most. It’s always my left arm or leg or both, and it’s usually not really twitching like you’d think of a seizure. It’s more like a bad cramp in my foot or hand that I can’t rub and get rid of. But I can deal with that. My hair still is extremely weird because of the radiation on my head. It’s all more curly than it used to be (and more gray), but the left side is just as thick as ever. The right side, where the radiation was concentrated, is much more thin and coarse. I have been wearing a wig for over two years, which I’m sick to death of, but that side of my hair may never go back to normal. This is probably the most difficult thing for me to deal with. I know it’s vain, but I always considered my hair one of my best features. I just started using Nioxin shampoo and conditioner, and it definitely has made a difference. I don’t think I’ve grown more hair in the thin areas, but it does look thicker. My poor hairdresser is at a loss as to what to do with it, but she’s great. We’ll figure it out as time goes on.
Other than medical issues, things are going very well in my life. My daughter just graduated from high school and will be going to college next month. She is planning to be a physical therapist. I think that’s great (although she’ll have to be in school for 7 years), since I know how much my therapists did for me. My son is still living in PA and working full-time. He’s talking about taking culinary classes, and possibly joining the Marines. My ex-husband is no longer paying child support, since our daughter is 18 now, so I’ve been cutting corners as much as I can and trying to find a part-time job at night. I just decided to try being an Avon representative, - they’re no longer called Avon Ladies, apparently - so wish me luck and pray for me about that.
The most exciting thing that has happened in the last two years is that I’ve started dating a wonderful man. In July 2008, I attended my 30-year high school reunion. Al and I barely knew each other in school, but we got reacquainted at the reunion, had our first date on August 30, and have been together ever since. It’s a long-distance relationship for now, which is difficult, but we’ll work that out eventually. We both know we’ve finally found the right one. It certainly took us long enough!
Throughout all this, as always, I’ve had support and love from my great parents, my children, other family members and so many friends. I continue to be so blessed, and thank God every day for everything He has given me. I would love to hear from any of you who may read this, whether you know me or not. I hope my story will encourage someone in some way.
June 12, 2007
This story begins on December 22, 2001. It was a Saturday morning, and I awoke to find paramedics in my bedroom. Apparently I had slept through a grande mal seizure. My then-husband couldn’t wake me up, and I had bitten my tongue so hard I was bleeding. He called 911, and the first thing I remember is being surrounded by EMTs who were asking me what day it was, and who was the president? I had no clue what had happened. They took me to the hospital, and thus began a long road. I had every test known to man, and fortunately there was no cancer anywhere else, but I had a marble sized tumor in my brain. It was called an astrocytoma, and the doctors said it could possibly have been there, growing very slowly, for my entire life. I had never had severe headaches or any other seizures... no symptoms at all. On Christmas Eve, of all days, I had brain surgery, at the age of 41.
I don’t really remember much about the next few days, which is probably just as well. I do remember opening Christmas gifts in the hospital. I couldn’t recall what they were until I saw the pictures! I was in ICU for a while, then a regular room, then I was moved to St. David’s Rehabilitation Hospital for 10 days. The surgeon had told me there was a possibility that my left side might be affected, but probably just my leg, and the movement would come back. He was right - after the surgery, my leg was completely rigid. It is a scary feeling to know you’re telling your leg to move and nothing happens. Fortunately the movement did all become normal again after a few days, with the help of a drill sergeant (also known as a physical therapist) named Marianne. She had me doing things I would never do in real life!
I continued with outpatient therapy for a few weeks, and also saw an oncologist, who determined from the pathology report that I did not need any further treatment. The surgeon also had told us he thought he got the entire tumor, but in hindsight I think that probably was not the case. I had annual MRIs for the next few years, and there was always a spot in my brain. They weren’t sure if it was a small part of the tumor that was left, or possibly scar tissue from the surgery. The doctors just kept watching it, and it didn’t grow or change at all, so everything seemed fine except that I had begun to have partial seizures. I still have them, and probably always will. I take medications, and I am very fortunate that the seizures are “minor” (as seizures go), and I always know when I’m going to have one. I get an aura, or a strange sort of tingling feeling, in my left arm. That’s the only reason I can drive... I have time to pull off the road if I feel one coming on. The seizures last maybe a minute or two, and I’m never unconscious. I can see and hear everything around me.
So, life seemed relatively normal. I had worked as a secretary for many years before my son Michael was born, and I was fortunate enough that I was able to be a stay-at-home (which means “in the car”) mom to him and my daughter Victoria through their elementary and middle school years. I was a room mother/field trip driver/PTA board member and loved it. But there were marital problems for several years which could not be resolved, so in March 2003 my husband and I separated, and I moved to a small duplex. The divorce was final that November, and I spent about a year looking for a job. It’s very difficult when you’ve been out of the work force for 17 years! I finally found a job as a receptionist for two female gynecologists, one of whom is a member of my church. It seemed as though things were finally going to be okay - as okay as most people’s lives ever are.
Fast forward to January 2007. I fell down the stairs in my house, but I wasn’t holding on to the railing, and I just thought I tripped. Later that month I had an appointment with my neurologist’s PA, and told her about the fall, but she said let’s just watch it for another month or so. Throughout January and February, I continued to get weaker on my left side. I was dragging my foot and the people at work thought maybe I’d had a stroke. My arm got to the point that I could barely use it. I also was having to really concentrate during phone conversations, and just was not myself mentally. That also probably had something to do with the Topamax I was taking for seizures. I went back to the neurologist’s office on February 26, and she basically did nothing. Needless to say, due to that and several other things, she is not my neurologist any longer!
On February 27, I could barely get out of bed. I called my office and told them I couldn’t come in. I also called the neurologist and explained that I had been there the day before and was now in worse shape. The receptionist said she’d have the nurse call me back. After waiting a few hours, I finally had my friend Marsha take me to the emergency room. Keep in mind that I had had an MRI the previous July, which showed no change in my brain. So I really thought this all was a result of falling down the stairs... maybe my spinal column was swollen or something. Well, at the ER I had a CT scan, and they wanted me to have an MRI the next day. I did, and the results were something I didn’t expect at all. The brain tumor was back, a malignant glioblastoma this time, and I would have to have surgery again. The surgery was scheduled for March 13. To add insult to injury, when I informed my office manager about what was going to happen, she called me back to say that the doctors were so sorry, but they had no way of knowing how long I’d be gone, and since it was such a small office they really needed to get a new receptionist right away. They did agree to let me stay on their health insurance policy for 6 months... paying the premiums myself. What I think about all of that is better left unsaid! I just think that eventually, what goes around, comes around.
That morning we got to the hospital before dawn to prep for surgery. A nurse shaved part of my head... they were able to use the same incision as before. She also shaved little places all over my head for small electrodes, called the MRI fiducials. It took weeks to get all that glue out! I think the surgery took about four hours. My parents were told by the surgeon that he had gotten all of the tumor that he could see. I was in the regular hospital for 4 days, then moved to a rehab hospital. I was expecting that, since I’d been through it before. Little did I know that I would end up being there almost a month. Once again, my leg wasn’t working, but this time neither was my arm. I had about three hours of therapy every day. Also during this time, I basically became toxic on Tegretol (carbamazapine), had one major seizure, and was pretty much out of it for a couple of days. Thank God my parents were there and took over!
I would like to say here that anyone who goes into any hospital, for surgery or not, needs to have someone go with you - relatives, friends, anybody you trust. You may think you’ll remember everything that’s said by doctors and nurses, but you won’t. Have people pay attention to the medications that you’re given as well. I know people in the medical profession try hard, but they are human and sometimes make mistakes. I’ve met many wonderful doctors, nurses, therapists, techs, etc. through this experience, but I’ve had some lousy ones, too!
So, moving on... I was finally discharged from the Healthsouth Rehabilitation Hospital on April 11. I was to have outpatient therapy for another four weeks, which I’m finally done with now. My leg is working fine, my shoulder is still a little stiff, but I have exercises to do for it. I also have a great new neurologist. I went to the same oncologist from 5 years ago, and he advised me to undergo radiation treatments and also chemo pills, hopefully as a precautionary measure. As of today, I have nine radiation treatments left, hallelujah! I’ve gone Monday through Friday every day since May 8. My hair has just about all fallen out, but it will grow back, except maybe the spot where the scar is, and where the radiation is being concentrated. I may have a bald spot there forever. The radiation specialist explained that they do radiation where the tumor was, but then they also go out to a wider field, because studies have shown that sometimes microscopic cancer cells are still there that can’t be seen on an MRI.
The first two nights I took the chemo pills, I was sick all night. They had given me phenegren for nausea, which apparently did nothing! Then I got a prescription for Kytril, which has been great. I still feel queasy sometimes, but no vomiting. However, don’t ask for Kytril unless you have a prescription plan with your insurance. We heard that it costs $600 a pill! That is insane, as are all the hospital bills, but that is the state of insurance and drug companies in this country.
So that brings you up to date. I haven’t been able to look for a job so far. That will have to wait at least a month or two. I was not able to get any kind of government assistance - i.e., food stamps, Medicaid, etc. - because I had an IRA with too much money in it. So I had to withdraw some from that... never mind my retirement! I also couldn’t get Social Security benefits, because you have to be disabled for at least a year. If you are wondering about suing my former employers, trust me, we tried. But Texas is an at-will employment state, which essentially means that if a company has less than 15 employees, they can do anything they want. I try not to be bitter about all of this. I have not (thank God) lost my sense of humor or my faith. I try to remember a great quote from Reba McEntire: The 11th Commandment should be “Thou shalt not whine!” That is not to say that I don’t have my moments, because I do, but I think that’s okay. A good cry is good for you sometimes.
I would like to end this by saying thank you to so many people. I won’t mention names, because I’m sure I would leave someone out. First of all, my wonderful parents, who moved in with Victoria and me on February 27th and have been here ever since. I’m sure they can’t wait to go home!! I never could’ve gotten through all this without them. To my friends in sorority and our dance studio, who took up collections for me, along with many other things. To my friends at Oak Hill United Methodist Church, who are still bringing food every 3 days. Not many people doing chemo gain four pounds! Thank you all so much. To my other relatives and friends, some online as well, I can not begin to express my appreciation for all the prayers, cards, e-mails, calls... it is truly overwhelming. I am so blessed. Last but not least, my thanks goes to Odile Kane, who wanted to do something although she’d never even met me, and created this website. It is my hope that we can help someone by telling my story. Let me leave you with these thoughts - what doesn’t kill you makes you stronger, and “I can do all things through Christ who strengthens me” (Philippians 4:13). If you’ve read all this, maybe you’ve been angered, or inspired, or had a little laugh. If so, I’ve done my job.
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