Peter D - Diagnosed 1994 with GBM IV
I had just met my wife to be and we were very happy together. Her 1st husband had died of Cancer. We thought that it could never happen twice in a row. To our great disappointment it did. On April 28 1994 I was diagnosed with some kind of a brain Tumor. We had talked of marriage before the diagnosis, however with impending surgery that would surely leave me with deficits, or even possibly death, we decided it would be good to marry. My children would not be able to make life or death decisions and my lady had already done so and was a nurse. I had a neurologist test me and he said it seemed like a tumor to him, and suggested that we see a surgeon. We made an appointment for Monday. He told us to 1st have an MRI and bring results with us . Monday afternoon at his office, he confirmed the worst. Yes it is a brain tumor and it is a Glioblastoma Multiforme IV, the most aggressive and deadly tumor of all. He wanted me to have surgery right away. The tumor was located in the left Frontal Lobe and was about a robins egg size.
I was put in the Hospital and began steroids and anti- Seizure meds. My whole world was collapsing right in front of me. I wasn't ready for this. I needed time to put my affairs in order. With a Prognosis of 3 to 6 months I had to make all of my life and death decisions before submitting for surgery. I spoke with my surgeon about the things I needed to do before surgery and while he didn't disagree with me he said that we had differing realities. We agreed to give me a week off with the stipulation that the following Tuesday he would operate. I checked out and set up an appointment with my attorney, to draw up a will and get my affairs in order. Following this my gal and I picked out wedding bands and arranged for a church wedding in the hospital chapel, and had a reception for 60 people , all in 1 week. My son had asked me to be his best man and I had to do this before surgery. Sooo, friends of ours drove us to the wedding, I carried out my fatherly and best man duties and returned home trying to prepare myself for this upcoming surgery.
Sunday and Monday were all too long of a wait with too much time to think. It was just overpowering. I don't think I slept much and when Tuesday morning came, I was a wreck. I had told my surgeon that I did not want to be awake for any of the pre-op things and he graciously agreed. They took me into the operating room in a wheelchair and transferred me to a table. The anesthesiologist came over and introduced me to the team and said this shot is just to relax you.
The next thing I knew was that I was awake in some large room. S ICU. My head felt heavy and so did my arm. I could move one arm and started exploring . Head all wrapped in bandages. Arm has large foam block with what seems like hundreds of wires attached to it. The catheter was in its place and that was about as far as I could reach. Nurses all around, noise, talking, looking, poking around the clock. Blood work every few hours. A continuos prodding and poking mixed with questions. Who are you, what's your name, where do you live, who is the president etc. I feel perfectly fine , and when I realize that the operation is over and I am alive, I cried. I did not think that I would ever wake up again.
Everything went well and the surgeon lets me go home on the 5th morning. I was in a state of confusion and depression. After all I was told that my prognosis was 6 months . I didn't know what to do or if I should bother to do anything at all. Such a short period of time.
I began radiation therapy the following week at my hospitals cancer center. Lots of pleasant people, with smiley faces offering encouragement. I wonder if they know that I am not going to be alive in 6 months. Radiation was easy but made me tired and cranky. 7 weeks everyday. My post surgery MRI was negative, what a relief, and I thought that after Radiation I would be all done so that I could have some time to enjoy what little life I had coming. Wrong! I was told how bad this tumor was and how aggressive it was and that to insure that it would not come back that I needed to do some chemo-therapy. Sooo, I met with the oncologist, who I did not like right off the bat. He basically told me that if I wanted to live I HAD to do 6 rounds of PCV. This is 1994 May, and there aren't many alternatives available. When I asked why 6, why not 5 or 7 he got angry and said that THEY have found that 6 is best. End of discussion. I just know that I'm going to love this.
I start with blood work to get a baseline and then a days worth of CCNU pills. Next week more blood work and a shot of Vincristine, followed by 2 weeks of Procarbizine, 3 times a day, including week-ends. Back for yet more blood work and another shot of Vincristine. The worst thing about this regimen is that you have to take these pills yourself and you know they are going to make you sick. Thank God for Zofran, a great anti- Nausea med.
After this I got 3 weeks off for good behavior and to build my body back up again in preparation for round 2. It comes all too soon. Each round goes well for me until the beginning of the 4th one when my blood numbers take a nose dive and hit the floor. The kind onc. doc. gives me more time to re-coup and we do blood work again in a week and when OK we start again. 3 rounds like this plus the 1st 3 , added to the 7 weeks of chemo and I am out almost 46 weeks, real close to a year. Funny thing, I did not die. I was so busy fighting this treatment that I didn't think much about dying. Shortly after completion of the Chemo I am scheduled for another MRI. For me the MRI is very frightening. If anything is found then it could mean more surgery or re-growth and impending death. I get very anxious waiting for the MRI date to come. My wife and I make an agreement for her to schedule the MRI and not tell me until that day of it to help me get through the anxiety of the whole process. Were lucky, she knows the Dr. in the MRI dept. and he gives us a "wet" reading so that we don't have to leave without results. What a help that is for me. The results of the 2nd MRI are negative again, Thank God. For the 1st year out of treatment I do a MRI every 3 months. Then I switch to 6 months. To date I have had 14 MRIs and everyone has given me fits of anxiety. I don't think that I will ever be able to handle them without anxiousness, even though everyone has been negative.
I had always thought that if I lived after treatment was over I would be free of all this cancer stuff. I couldn't have been farther away from the truth. It seems that this cancer journey will not end until I am in my grave. I will always have this Brain Tumor thing over my head and I will never stop thinking about it or worrying that with every headache it is coming back. My surgeon has told me that with a GlioBlastoma there is no recession its not a case of if it will come back but when will it come back. I have to live every day of my life with this.
I have many things that I do to cope with everyday life. Prayer every morning and night is my way of starting and ending my days. I find comfort in my faith and believing that God has kept me alive for a purpose. I voluntarily retired from my career of 27 years. I turned what energy I had towards helping others. Before my 1st year of treatment was complete I had begun volunteering in the cancer center of my hospital, counseling and helping people cope with their own cancer. I also began attending a support group for cancer patients and have found that it is the most wonderful place for me, a place where I can feel normal. The support group gives me just that, support, no stares, no doubts about me , just a comfortable place where I can open up and know that the people are listening and understanding what I am saying and how I am feeling. It is a weekly meeting and I look forward to it. As a group we have parties, attend seminars, and educate ourselves on new procedures. As soon as I found about the National Brain Tumor Foundation and the Brain Tumor Society , I made contact to see what they were about and what I could do to get involved. I am now manning a Hot line for Glio Patients. I'm sure that I have spoken with fellow Glio patients all over the world both by phone and e-mail, and have made many friends. The satisfaction I get from this bolsters my own sense of well being. I have recently begun participating in conferences, writing articles, and making presentations to groups about me and Cancer. I try to let people know what we go through to survive, and hope that they can understand. I have also taken a more active role in my church and attend mass faithfully.
I am a member of the on-line cancer list group and can be reached through e-mail using the form below. I have learned so much from this list and am a daily reader there.
All of these things are the methods I use to cope with this disease. I find that I have to be busy in order to not get myself in a state of depression, and all of these things help me to cope with everyday life.
Prayer, support from family and friends, support groups, volunteering, faith in God, knowing that HE is the reason that I am here, helping others all contribute to my survival.
For now this is the end of my story, but if I have anything to do with it, I hope to update this every year for many more years.
Follow-up - added October 22, 2000
Here I am again, this time as a 6 1/2 year survivor. My journey so far has been filled with many emotional highs and lows, along with both physical and mental long term survivorship problems. Some of my lowest moments are when I see friends I have made throughout the years pass on to the next world, many dying from the same brain tumor that I am living with.
As with anyone with cancer, my physical capabilities have been diminished. I can no longer do many of the things I did in my pre-cancer life. While I have the initial strength, I no longer have the long term endurance. My tumor was left frontal, and due to the long term effects of radiation done in 1994, besides losing most of my hair, I have lost some of my short term memory. When people ask me how I cope with this, I tell them that "when I forget something, I no longer worry about it, I just try to forget that I forgot it."
Most recently, I began suffering from bouts of double vision which on occasion were accompanied by short but severe headaches. My immediate response was that the tumor was back! After a MRI which proved to be negative, and then an EEG looking for evidence of small strokes, also negative, and then an MRA, some kind of a vascular study, also negative, it was suggested that I contact a neuro-opthamologist. I spent a day with one, who also found nothing. My own radiologist suggested that it just might be caused by the radiation. The long term effects of the radiation could cause a narrowing of some of the veins on the left side of the brain, which supply blood to my left eye. A simple aspirin a day seems to be the cure, so far.
On this journey of mine, to date, I have had 1 surgery to remove the tumor, 7 weeks of radiation, 6 rounds of PCV chemo, 19 MRI's, more needles and blood draws than I care to count, and all of the emotional anxiety, limitations, and problems that go along with living with a brain tumor.
However, for me, this has been a very small part of my journey. I have also had some wonderful experiences along the way. On May 7th of 1994, I married my best friend, 10 days before my surgery. She has been my inspiration to live. Through her and her existing family I have been blessed with 3 beautiful grand children. We have traveled extensively and in 1997 we were able to travel to France and participate in the 100th year celebration of my patron saint, St. Terese of the little flower.
This journey has also awakened my spirituality and my faith in GOD. I have become much closer to my church, and have become a member of our Parish Council. I actively share my blessings with others. I still volunteer at my hospital's cancer center, and am an associate of the Sisters of Charity, which run the hospital. I am also a member of my town's local food pantry, and help provide meals to the needy of my town. I continue to Mann the Brain Tumor Hot Line for the Brain Tumor Society and the National Brain Tumor Foundation. I have expanded my role as a survivor by being a support person for the Hope Network, and have recently had my story added to the "uhealthy.com" web site.
Last but not least, on November 2nd of 1999, my son and his wife presented us with their first child, a bouncing baby boy named Peter.
In closing, all I can say is, "ain't life Great!!!".
Actually not much has happened since the 6 1/2 year point with the exception of turning 60 and surviving for another 2 1/2 years. Things come and go. I am much less concerned with my own personal health now and I can even schedule my own MRI's, how about that. There have been so many new and wonderful options in this Brain Tumor World of ours that I believe that when the time comes for me there will be many things I can choose from, and places for me to go, another planet compared to what was available back in 1994. Yes, there is always a little anxiety but not enough for me to be stressed out about. Still doing MRI's and blood work on a 6 month or so basis and still coming out with no sign of any tumor. My volunteering has increased and I am very happy about that. I get to see more patients than ever and my e-mail level is growing. I am getting into some great fishing with a friend of mine, and this has added yet another dimension to my life.
I have learned how to live with this tumor and not worry about it every day, I have found my personal nitch in life and am enjoying every day of it, and of course my faith and prayers are always on the increase.
On April 28th of this year I celebrated my 10th year of survivorship with this GBM tumor of mine and for me the 10 years have brought much happiness and a life filled with satisfaction by helping others in need.
Today May 7th is a special day for me, it is the 10th anniversary of my marriage. I still volunteer in the cancer center of my hospital and a few weeks ago my neurosurgeon stopped me and said "aren't you coming up to a milestone " and "this deserves a celebration" He then asked me to make an appointment for a visit with him and tell his secretary to get a bottle of champagne chilled to celebrate my 10 years of surviving. Today my wife and
I went to his office and the whole office was there to help us celebrate this wonderful milestone. I cannot tell you what an uplifting experience this was for me. I never expected to live this long or to live as cancer free as I have. Hopefully HE will continue to be bless me with life so I can continue to help others that need help.
I am now out over 11 years and still doing well. My scans are still not finding any sign of tumor and I feel good. I have been noticing that I am getting more forgetful as time goes on, but my family thinks thats just because of my increased age. I am getting more comfortable with this tumor and just recently decided to move to Arizona and escape the cold winters of New England. We have successfully moved and I am still enjoying my life. I thank the good Lord everyday and night for the life he has given me.
We are now living in Arizona for almost 2 years, and it has been a blessing for me. Besides the good weather, there is so much to do and see. I seem to have much less free time than ever, it makes the time fly by. Hard to believe that I am out over 12 years and still doing well. I think we moved to the right town, called "SURPRISE". You sure could have fooled me that I would still be here. Medically, my MRI's are still not showing any sign of tumor. I continue to thank the Lord every day and night. My short term memory has not gotten any better and I find myself having slower recall. By taking advantage of today's technology, I now have only device to carry with me. It is combination cell phone, appointment calander, birthday and anniversary alerts and lots more. It keeps me going with mininmal problems (I feel more normal than not). As far as the new roads, highways and huge developements go, I have a portable GPS system that is always in the car with me. A very calm and understanding voice guides me from my home to any place I want to be and back. So, even with limitations, I can still do and feel normal without any undo anxiety or fear. These high tech items are very user friendly and guide you. If you have any problems the manufacturers are always willing to help.
I will continue to do my volunteering, just new hospitals and different people.
So for now I will say thank you for reading my story and please write if I can help you.
This month on the 28th I will have survived for a full 14 years. Once again my latest MRI shows no sign of any tumor. Thank the Lord.
That's the good news. In june of 2008 I elected to have open heart surgery to correct a childhood heart defect that finally caught up with me. The surgery and recovery was worse than the Brain Tumor, However I survived and am back to being better than ever. Of course my eyesight worsened and I was informed that I had cataracts in both eyes. Wouldn't you know it. it seems that this cataract thing is reserved for the elderly which at 65 I qualified. That's what I get for living so long. LOL.
Oh, yes I still have my GBM tumor, but it is interesting to note how I managed to forget about it for a while.
Lastly my step daughter blessed us with yet another boy grandchild, Noah. I have so much to be thankful for and I truly know the meaning of
"Life Is Great".
Today May 17th I am celebrating my 16th year of survival. I can still remember when I was given the diagnosis. Itâ€™s hard to explain how the fear just took over. Now I have learned how to let it go and enjoy all that HE has given me for as long as HE wants. I wouldnâ€™t trade the life I have for anything.
This past Christmas was spent with our children in Connecticut. When ever we go back I try and have an MRI and visit with my surgeon. I have been noticing that my balance is becoming worse and he also noticed it. The MRI is still not showing any signs of tumor and he told me that it is possible that over time things like this may happen. I also seem a bit slower and I have some trouble when walking stairs.
I try not to dwell on them and know that with the good life I have been given some bad has to happen. I just keep going and thank the Good Lord every day for the life I have.
Please write and if I can help I will.