Ron's Story - We Seem to be Avoiding Feelings
by Ron Newburger
My name is Ron Newburger. I live in Grayslake, Illinois, and will be 69 on 11/13/2011. I am married, with 3 children (all grown) and five grandchildren. My 88-year-old mother-in-law lives with us, as well as my divorced son. If that was not enough, my life as I knew it came to an end 4 years ago. I relate this story, not because of anything miraculous that I did to further the advancement of a cure for GIST, but in hope that my experiences and journey may give some insight to someone else who may in some way relate.
At age 60, I decided that I would get a "baseline" colonoscopy for my birthday. Taking you back ten years prior, my good friend and PCP (primary care physician) had been after me to have a sygmoidoscopy. Every year, for ten years, I refused. After my wife had had two colonoscopies, I told my PCP that I would do that if he would recommend it. He said that there was no basis for such an expensive test that insurance would not approve. At age 60, I told him that as I was in a PPO, I was going ahead with my test with or without his approval. I went to my wife's GI doctor, Dr. Robert Hadesman at Condell Hospital in Libertyville, Illinois. We met with him for the pre-procedure office visit. We went through my medical history (including diabetes and high blood pressure) and he told me what the procedure would be like. We made an appointment and as we were about to leave my wife told him that my grandmother had died of a stomach disorder. I knew I was getting old; but, never remembered such a diagnosis. He said he would add an endoscopy to the procedure. I agreed by jokingly saying that he had to promise to do the endoscopy first. Keep in mind that my followup with my aunt confirmed that in fact my grandmother did not die of a stomach disorder; thus, there was no reason to have had an endoscopy. As you will see, something else was at work here.
The procedure was done and upon awakening, the doctor told me that the colonoscopy showed no evidence of disease (NED). That was the good news. The bad news was that the endoscopy showed a shadowy "something" on my esophagus. He did several biopsies and would have the results in 72 hours. I made the mistake of asking what he thought it might be. He said, "anything from benign to cancer." He sure covered his butt.
72 Horrendous Hours
I went home and spent the most traumatic 72 hours of my life. I was dying! There was no other explanation. I worried about my family. I planned my funeral and burial. I don't think I slept for 72 hours. And then the day came. He announced the biopsies came back "benign". What a relief. What a wasted 72 horrendous hours. He pulled me back to reality by saying that the problem was that he still couldn't accept that it was nothing. It had to be identified. He wanted to do another biopsy. I agreed and it was done. This time however, I had promised myself that I would never ever put myself through the mental anguish I had previously gone through. This time I was fine. He called me in to discuss the results. Again it was "benign". Doing fine, weren't we? He, though, was still not satisfied (persistent little bugger). He recommended that I have an endoscopic ultrasound. He sent me to the Robert H. Lurie Cancer Center at Northwestern Memorial Hospital in Chicago.
I think you can already guess the results of that procedure. Wrong! It too was benign. I then met with the Chief of Surgical Oncology at NWMH, Dr. Mark Talimonti. He explained that although all of the biopsies were benign, the tumor should be removed in case it was a GIST (as he expected) and only a subsequent pathology would reveal the truth. It turns out that my mitotic rate is 4 of 50, which may explain all of the benign results. We spoke of Gleevec, which was still in its infancy and being trialed there at NWMH. He suggested that as long as the tumor appeared to be quite operable, he would save the Gleevec for when it became necessary. I asked "If I were your father (assuming he loved his father) would you still recommend the surgery?" The answer was yes.
The surgery was in July 2003 and took 5 hours. I was in the hospital for 2 weeks and at home recuperating for another 4 weeks before returning to work. Surgery was certainly not a pleasant experience. The only thing that stands out though is that when I woke up I had asked the nurse in recovery to stay with me a couple of minutes until I could get my bearings. She said she would be right back; but never did return. Being unable to ask questions was very disconcerting for me. I felt totally lost and out of control. The other two things were the tape that was used to hold the morphine drip bothered me and the removal of the catheter changed my voice to this day. I now sing soprano.
While in the hospital, I was asked to participate in their blind study of Gleevec. I asked if I would know if I had the placebo or not. It was a blind study and I would not know. Not particularly wanting to add to the plethora of pills I was already taking I told them to pretend that I had gotten the placebo and study me in that manner. They looked confused and let it drop.
Not wanting to drive 40 miles to downtown Chicago to participate was also a contributing factor. I decided to find an oncologist up north. I did and I was on a schedule of quarterly CT-scans. I can guarantee you that this oncologist knew nothing of GIST, other than what he may have read about it. On the quarterly CT-scan, 15 months after surgery, my persistent Dr. Hadesman said that the tumor may have returned. Not wanting to waste more time, he sent me back to NWMH for the endoscopic ultrasound. They confirmed that the tumor had returned.
This time I was under no illusions that I didn't need some expert advice. I met with Dr. Al Benson, the GI oncologist at NWMH. Not only did he have several other GIST patients; but, he was a speaker on the subject at many medical schools and hospitals around the country. We again spoke of Gleevec and surgery. Again the theory at that point was to save the use of Gleevec til later. At that time, as it is even today, too many patients were becoming resistant to its effects. Sutent had yet to come on the market; but it was in trials. A full esophagectomy was the recommendation. That scared the heck out of me. So, I spent the next several weeks calling all around the country to all of the cancer centers for advice. I searched for new procedures of any kind, including RFA, that would eliminate the need for this surgery. Everyone I spoke with, to a one, said, that if it was operable, I should have the surgery.
My brother-in-law is a radiologist in upstate New York. I went to see him, as they had just gotten a brand new CT/PET machine. I was to be the first patient to use it. Unfortunately, my plane was late and I was the second (another lost claim to fame). The films showed that the tumor was cancer and that it had not metastisized anywhere else in my body. So, the decision was made.
I was then introduced to my next hero, Dr. Matthew Blum, my Thoracic Surgeon. (My first hero is the persistent Dr. Hadesman.) I don't think I have ever met a surgeon more caring and gentle than Dr. Blum. He not only explained every step of the procedure in detail; when my wife and I looked a little confused, he took the time to draw pictures to make it more clear. Every time I have ever been with him, he has had a smile on his face and nothing but kind words to say. How refreshing!
The surgery was performed in May 2005. The surgery was scheduled for 7 hours. It took 12 hours. He had to work through a lot of the scar tissue from the previous surgery. Recovery also took much longer. To preface what happened next, I have to tell you that when I went up for surgery (or down, I'm not sure) my family left the waiting area to get coffee. They left a backpack in the room with the things I might need after surgery. One of those things was my eyeglasses. Yep, someone stole the backpack. After waking up, all I wanted was my glasses. I was lost. I could hardly see the TV, so I was left to my own thoughts and dreams. I tried to focus a few times on the picture that was hanging on the wall in front of me. It intrigued me because it was hanging askance. This was to no avail.
I wasn't in much pain, perhaps from the morphine. However, I began having some very weird dreams which turned out to be hallucinations, I remember dreaming the same dreams I had dreamt two years before during my first surgery. I tried to scream. STOP, I DON"T WANT TO DREAM THIS AGAIN. It was to no avail. As much as I screamed, no sounds came out. Nobody came to help me. After four days of a dozen other "dreams" (I won't go into the ones about the third shift nurses having an orgy outside my room, or the one about Michael Jackson and Marilyn Milian of the "Peoples Court") I will tell you only about the one at McDonalds in Indiana. I was in McDonalds in my hospital bed. I was part of some FBI investigation. I was exhausted and only wanted to get back to the hospital. I asked my wife where my nurse was. She told me she had to go home. I went ballistic. "SHE WENT HOME? And left me here at McDonalds?" My wife thought I was nuts. She told me to call the nurses' station. How could I do that from McDonalds? She walked over and handed me the nurses' call button. I knew then that I was in trouble. I was losing my mind. I looked around and saw the picture still askew on the wall. I was in my hospital room. I was definitely going crazy.
The next day, the surgeon's head clinical nurse came to see me as she and the surgeon did every day. I broke down. I had lost it. I told her I was going crazy. I related a few of the stories. She laughed. I said that it really wasn't funny. She explained that some people have a reaction to morphine that makes them hallucinate. Just what I needed. She immediately took me off the morphine drip and removed the catheter. This time I was prepared for the catheter, but nothing happened. I asked when she was going to do it. She said she already had. Again she laughed, "It's all in the technique." Having dealt with the hallucinations of the morphine, I can't imagine what these people who do drugs can be thinking. It was just terrible. None of them were fun. They were all so bizarre and dark some painful and some scary. Of course, I don't know what that says about me.
But, back to my second hero. Dr. Blum came to see me after a few days out of recovery to explain that the attachment of the stub of my esophagus to my stomach, which was pulled up to meet it, was fine. There is no sphincter there now, so that I have to be sure to eat sitting up (I don't know who eats lying down) and finish eating and/or drinking 3 hours before I can lay down to sleep. He also sealed off what would be the pouch of the stomach (a la a gastric bypass) to keep food from laying off to the side and causing other potential problems. The sphincter to the intestines was also opened to allow food to more easily pass thru my system. It was that opening that had "sprung a leak". The liquid was beginning to build around my lungs and would soon prevent me from breathing. I told him that my wife was on the way to the hospital for her regular visit and we could discuss it with her. He said there was no time. He left the room and the orderlies were immediately in to wheel me back to surgery. Thank God my brother was there to relate what happened to my wife. Otherwise, I'm sure my wife would have freaked out if she couldn't find me.
That surgery went well. He had warned me that the sedation medicine he would need to use might cause kidney failure. He hoped not. Wrong again. It did, and I was on dialysis for 5 days while I was kept under sedation. I knew nothing about the amount of time I was sedated until several weeks after the surgery when my wife finally explained what happened to me. Once again, persistent followup by caring doctors had saved my life.
This time my recovery in total was different. I was in the hospital for 5 weeks; most of which time I was on a feeding tube for nourishment. I finally got Jello in that last week. They didn't even want me to have water. The nurses used to swab my lips and when they weren't looking I would suck on the swab. After the 5 weeks, I was moved over to the Rehabilitation Institute of Chicago, the premier rehab hospital in the country. I was still pretty weak with the muscles in my arms and legs. I had a problem with words. I could speak okay; but I had a problem recalling the words I wanted to use. I also had a problem writing. I couldn't keep my hand steady. I was at RIC for 10 days before Blue Cross, in their infinite bureaucratic wisdom, decided that I could do this as an outpatient. I still had several tubes attached to me and a port from which to draw blood. I wasn't about to go home that way. Blue Cross wouldn't acquiesce to the doctors' recommendation to stay. So, they removed my tubes and sent me home with a cane and a handshake. I was assigned to one of the RIC outpatient units in the northern suburbs. They would send a car to pick me up in the morning and drop me off late in the afternoon. It was 6 more weeks of rehab before I could get back to work.
I reflect back to the time following my first surgery and wanting to know more about GIST. On the internet I found The Life Raft Group. I found that there was a local chapter in Chicago. I began to attend the quarterly meetings. I have met some truly wonderful people there as well as those here at GSI. Many, like me, follow the GSI group as well. After my second surgery, I returned to the group meetings. I was terribly distressed about the number of people that had lost their battle with GIST during that time. I found that I had been obsessing about GIST. I spent most of my free thinking time worried about not if the tumors would return, but when. It didn't keep me from sleeping; but it did consume most of my waking hours. At a subsequent meeting of LRG, I brought up the issue. At each of the meetings I attended, we spoke of the medicines, the trials, what GIST was all about, the tests you should have, etc., etc. Even the guest speakers, like Dr. Demetri, spoke about the same things. So I asked, "All of this is important and informative; but, we seem to be avoiding 'feelings'. I can't be the only one having a problem dealing with this". Most everyone agreed with me. We decided to have a psychologist that deals with cancer patients attend the next meeting. It was also recommended that I read the book by Dr. Jimmie Holland, "The Human Side of Cancer". I read the book, which was very good, and attended the next meeting. It was all very interesting; but, I needed more.
The thing I got most out of the book was that there was such a thing as a psychosocial oncologist. So I called my favorite Dr. Blum and asked if the NWMH had such a person. He put me in touch with the head of that department. I met with her for three months. We spoke of cancer and many other issues. She too was fantastic. This was what I needed.
By the way, I have found out that I do have a very small claim to fame. Because of my second surgery, my case is being followed and used as a case study for removal of the whole esophagus when GIST is presented on the esophagus.
So, what have I learned? That Cancer is a disease? A killer? A thief of body and mind? Yes. Can you take control? Yes, also. Has my lifestyle changed? I was forced to change. It took a while; but, I finally accepted the fact that no matter how hard I tried, my life would never be the same again. I can no longer eat they way I did. Nor eat the things I did. It's rather funny that I can eat hot jalapeno peppers; but, I can't eat things high in sugar. Hours of severe stomach cramping taught me that. I carry Donatol just in case I guess wrong about sugar content of foods I eat. I still have physical remnants from the surgery; such as a little pain when I have to take a deep breath or yawn or sneeze or blow my nose.
One more story and I promise I'll close. After getting out of RIC, I made an appointment to see my PCP. In the meantime, I went back to my regular regimen of pills for my diabetes and high blood pressure. It was several days later when I went to the doctor. His nurse met me, as always, and did her pre-exam. She tried to get my blood pressure, but couldn't. She tried another cuff. That didn't work either. She called the doctor in and he couldn't get my blood pressure either, it was that low, like something over 30. They called the paramedics to take me, basically across the street, to the hospital. In Illinois, the paramedics are required to start an IV before you get to the hospital. So they drove around the corner and parked to take the time to start an IV. That is just so crazy. My blood pressure started to rise as a result of dealing with that. In any case, my veins were in such bad shape from the hospital, they couldn't get the IV in after several tries. By now I was threatening to sue if they didn't get me to the hospital. They moved. We got there in seconds. Thankfully, the nurse that came to give me the IV calmed me down and was able to successfully administer the IV on one try. Yes, I kissed her hand. The short version of this was that I had OD'd on my blood pressure med. What I'm saying is that before you administer meds to yourself after such an ordeal, be sure that your doctors have reconsidered such meds and/or dosage.
I have learned that as much as we do know about GIST, there is still much we do not know. I have learned that everyone's situation is different. GIST represents only 2% of all cancers. GIST on the esophagus is only 2% of that. I still don't take Gleevec. I take no comfort in those facts or statistics. Again, I know my time will come. It is not "if"; but "when". But I don't worry about it anymore. What can I say to those that have read of this journey, this adventure into the world of medicine? I know that you don't want to be your oncologist's first or second GIST patient. Since GIST can appear anywhere in the GI system, I would want an oncologist that has had more than one patient with GIST in that location. Read up on GIST. Visit the two major websites of GSI and LRG. Join the email service of GIST SUPPORT. Listen to what people offer of their experiences. Take what may be important to you today; but, keep in mind that that which appears to be unimportant today, may by important tomorrow. You need to be your own best, well informed advocate. Unlike others that rush to the 5 major GIST centers, I don't think that's totally necessary today. More and more oncologists are becoming very familiar with GIST. Cancer is costly enough without running all over the country. Trust in you doctor is still the primary concern. If you are unsure or uncomfortable, by all means, seek a second opinion.
Respectfully, may I say that I hope and pray with all of my heart and soul that a cure is on the near horizon and, that if not a cure, a method by which to allow all of us to lead a happy and full life, albeit not normal.