Thursday, Dec. 11, 1980
My first day of writing a journal to record what's happening in my life. I woke up this morning staring into the eyes of my new- found mate, Audrey. I'm becoming very attached to that woman.
We took a shower together, went downstairs for coffee and then we kissed goodbye. Kevin showed up for work, late as usual. We talked about Jimmy Scala and how nervous he appeared lately over the status of the Egremont Inn. Things are beginning to get pretty hairy around here. Fewer lunches and dinners are being served. I just hope we can hold out through the winter.
Friday, Dec. 12, 1980
I woke up this morning at 9:30, not wanting to get out of bed because my room was so damn cold. I decided to go for a swim since that usually helped to alleviate the persistent pain in my back, and lately I've been neglecting it. Jimmy hadn't come back from Albany, so being a live-in at the hotel, I'm responsible for the building against possible villains. He didn't get back 'til 10:45, so I had to blow off swimming.
Saturday, Dec. 13, 1980
I woke up late today, but I still had some time for a quick swim. I felt groggy from that s - - - - - wine the night before, and from this pain in my ass (literally). It seems to be getting more intense. I could barely put my socks on or tie my shoes. The muscles are so incredibly knotted up.
Audrey finally showed up at 4 p.m. She did some of the baking for Sunday's party, then we met in the walk-in for a few sneak kisses. How long will this euphoria last? I'm on cloud nine . . . if there is such a place.
Tuesday, Dec. 16, 1980
Audrey and I had planned to go into NYC but because of the snowfall, we thought it unwise to travel. Instead we had breakfast in bed and made love again. How fantastic!!! I hit the floor to do some of my back exercises which had been prescribed to me.
We all went shopping in Pittsfield which was agonizing for me in the car. Kevin was telling me that Tony may have a deal for us in opening up our own restaurant in downtown Pittsfield. I think maybe this may be the break I need. I'd like very much to have ownership in a business.
Thursday, Dec. 18, 1980
It's Audrey's last night here. Xmas vacation has already begun for her so it's back home to mom and dad. It's pretty depressing for me since we spent the whole of the last two months together. I've been thinking a lot about this relationship and what may become of it. Audrey is so bright that I know some day she'll just take off. I guess I'm just going to ride it out and not worry about the hurt. The companionship is great and well worth the risk.
Friday, Dec. 19, 1980
Dinner was slow. Very slow. Time to do some heavy soul searching into the business world. Please, God, give me a break!!!
Audrey called me at 11 p.m. She got caught in the parental third degree because of our relationship. I suspected that they might feel this way about me, a lowly cook, you know. How can such a bright woman as Audrey's mother be so damn small when she hasn't even had the opportunity of meeting me?
Saturday, Dec. 20, 1980
We did next to nothing for lunch and dinner. The entire pleasure in cooking is to be able to use the freshest ingredients for an appreciative clientele. Without any people it's impossible to have any fun.
Saturday, Dec. 27, 1980
I'm still trying to rest my body after those two days in Clinton. I'm back to work, and speaking of back, mine still hurts. Dr. Cohen called me yesterday to say he was going to put me through a whole series of rectal tests. One of them is a radioactive enema. It scares me. I've had so many tests already, X-rays especially. I told him that the pain seems to decrease when I use the drug Indocin. We left the situation open for a week of so.
Jan. 5, 1981
It has been a few days since I last wrote in this journal. In eight days we did over 470 dinners. I went crazy for a while there, but on the whole I'd prefer to be busy than bored.
Today I went to Albany. Audrey and I had a nice time in the South Mall. We even went skating. I rented a pair of figure skates and fell flat on my face. It felt terrific to be out there on that tiny ice rink in the midst of a crisp wintery afternoon.
We drove back and as usual, couldn't keep our hands off one another. For the little car I drive, we sure try to make the most of it.
Tomorrow, it promises to be quite unusual and perhaps humorous. I'm going to dinner with Audrey and her parents for the first time.
Monday, Jan. 12, 1981
It has been a noticeable long while for this next journal entry. I've been very busy. We are beginning to see some returns in the business, which pleases me.
Dinner with Audrey's parents went very well. We talked a lot about the Inn and touched on politics. Audrey seemed pleased with the evening.
I wonder when the hell I'm going to get better, or if I'm going to get better. The right buttock is swollen. It's getting more and more difficult to walk and sit comfortably. A small pain in the ass has now turned into a nightmare. The pain is continuous. Please God, heal me someday!
Thursday, Jan. 15, 1981
I am so confused and aggravated.
Monday, Jan. 20, 1981
I managed to make it through a very painful weekend. It's time to stop work and prepare for recuperation. I am limping around pretty down and out, and just plain miserable. Today I've been lying in bed reading.
Tomorrow morning I'm supposed to see Dr. Lynch again. I hope I'm not in for some more depressing news. I can't wait to be normal again.
I pleaded with Jimmy to take me off the payroll, but he said in his own conscience, he couldn't do it.
Tuesday, Jan. 21, 1981
Today was the day that I found out I need an operation. It'll be an exploratory, just to find out what's going on inside. The X-rays proved that something -- a large mass -- was pushing against the bone. I am very depressed. I wonder if it's a tumor, malignant? Or maybe it's something simpler than that.
God, please help me get through this. It's so painful. Friday morning I check into BMC (the Berkshire Medical Center) for a CAT scan which should determine what I have.
Friday, Jan. 23, 1981
The real nightmare has begun. I rode up to BMC flat out in the back of Jimmy's car. I barely said a word. I'm scared to death that it may be something really serious. The CAT scanner determined a growth the size of a grapefruit. The doctors didn't say a thing about it, other than they'll have to do a biopsy. I'm really scared now. With my luck the thing will be cancerous.
The phone calls came buzzing in soon after word got out. I've heard from dozens of friends and relatives. Mom started to cry on the phone, which started me going. Now I'm a wreck.
Monday, Jan. 26, 1981
I woke up early this morning because of the operation. Mentally I was prepared for it, especially if there was good news around the corner. The anesthesia wore off eventually and the pain set in. I was moaning and groaning, and Kevin and Joanne were there feeling pretty helpless. The nurse came in and gave me two more shots for the pain. That was it.
Audrey has been coming by every day to see me and trying to lift my spirits. She has been an unbelievably beautiful person to me. I don't know where, or how, to begin to describe it. I was diagnosed earlier by the doctors as having a cardoma.(??) It's an extremely rare type cancer, so now I'm to be transported to Memorial Sloan-Kettering Hospital in NYC for major surgery. According to the doctors, it's a slow growing tumor, comparatively speaking.
Thursday, Jan. 29, 1981
This whole thing has really gotten my spirits down. The nurse came in at 10 a.m. to say that I'm leaving for NY within the hour. My mind is going in circles. I wonder if I'll have much of a future left. That thought makes me so depressed. How does anyone learn to deal with the prospect of limited life, especially at 27 years of age?
Friday, Jan. 30, 1981
I had trouble sleeping again last night. The doctors came in in a team of six or eight. It's all kind of mind blowing when you hear them discussing your case. I have something completely different from what they had originally diagnosed???
Sunday Feb. 1, 1981
I have a malignant tumor which is treatable with chemotherapy. The first diagnosis called for radical surgery. No one has lived through it for more than 15 years. That was terrific news considering prior to that they gave me every indication that I could walk out of here perfectly normal.
The final diagnosis for my particular type cancer is really a mouthful. Something called rhabdomyosarcoma. Chemo starts Saturday morning. I'm nervous as hell. First they give me a shot to make me sleep, then they pump me with four intravenous bottles of different types chemo drugs. I'm to get another shot for nausea, and for the finale they're going to do a bone marrow. Christ, does that hurt. I screamed in pain.
Now I'm laying in bed, and have been for the entire afternoon. My parents are here. I'm shivering and I feel just awful. Late that night I woke up and started to vomit all over the place. The sheets were changed but then it happened two more times that night. I feel totally helpless.
Tuesday, February 1981
My head has so much to digest, I find I cry over the smallest inconveniences. It's so difficult to believe that all this is happening to me. I'm like a wounded animal, wanting to run and hide in the woods and eventually die, alone, by myself. My body is so pumped up with drugs that it makes me weak all over. Consequently, my will to survive this whole ordeal diminishes. Somehow I've got to find the strength to fight this thing or I'll die. Why me?
I can't wait to see Audrey. She will make me laugh and feel happy, which is exactly the medicine I need. She knows just how much I love her. I need that closeness between us.
We got high together, something I hadn't done in a long time. It was euphoric at first, then the tears started to well up in my eyes. I couldn't stop crying. My mind is so damn confused.
Thursday, February 1981
I am trying to get psyched about another zap of chemo. My mind has been spinning over the question of whether this is the right treatment or is the answer in macrobiotics. Could one's diet really be the cause of this malignancy?
In the meantime this is taking a toll on Audrey. She's having trouble dealing with my recent weight loss and my baldness. I guess I can understand that. She has her own life to live to the fullest. I could make it alone if I had to!
I'm sure looking at life with a whole different perspective since my diagnosis was announced. I'm very happy to be alive. To walk, breathe, talk, laugh and smile are feelings that are especially precious to me, as of late. I love life. God, please help me.
March 3, 1981
I made it through the last chemo treatment. Couldn't wait to get the hell out of the hospital. My roommate was dying of cancer. He was about my age. He only weighed 85 lbs. It was a horrible sight to see. He was given heavy doses of morphine for the pain. God, please don't let me die that way.
Audrey has been a real godsend. I'm forever indebted. I still see her all the time and we have no trouble finding words to say to one another.
April 15, 1981
I obviously haven't allowed myself time to record what's been happening lately. Too bad, so much has changed, and I would hate to forget anything. Since I last wrote, I've had two more chemo treatments. After the last treatment, I was seriously beginning to wonder if I'm going to survive this. Already I've lost 25 pounds. I'm weak as hell, and I have an operation yet to go through. I can't believe how depressed I've been.
I just spoke with Dr. Rosen. This time about the recent CAT scan I had. He said that there is still a sizeable mass at the base of the spine, and he has ordered a change in the chemo drugs. Terrific!!
May 1, 1981
I'm bedridden now. My foot is causing a lot of pain. It's excruciating, especially if I try to put any pressure on it. I'm going crazy. If it's not one thing it's another.
It's a gorgeous day outside, and here I am stuck in this stale square room. The kitchen at the Inn looks more and more appealing to me now that I'm set apart from it. I really miss cooking and being part of the action.
Audrey continues to amaze me. Her spirit has been most courageous throughout this whole thing. I don't know how she manages to prevail and still come up smiling. She has been my lifesaver; feeding me, doing my laundry, dressing me, driving with me to the doctors', and most exciting is her insistent cheer, and still aching desire to make love with me when I'm able. I truly love her more than I can ever remember loving anyone before.
Another chemo treatment is scheduled. For only one day I would love to be normal again.
Almost every time I start thinking about Mom and Dad I start to cry. I think in some ways it's just as hard on them as it is on me. Mom is noticeably upset. It hurts to see her that way. I had a marvelous childhood: country clubs, hockey, vacations with the family, golf, baseball, swimming. It really upsets me to see what I'm putting them through.
May 5, 1981
I slept badly again last night.
Audrey and I awakened early. We got to the hospital around 3. The X-ray wasn't until 10. Dr. Rosen looked at the tumor and the leg. He said the thing looks as though it had grown some more. My face nearly dropped to the floor when he said that. God, please don't let me die!
Wednesday, May 6, 1981
A note from Audrey . . . . Dear Rod, I love you immensely and intensely and I'm with you ALL THE WAY! Your lover, Audrey.
Sunday, May 10, 1981
I made it through the intense chemo treatment. I was on the IV for four days. Boy, did my kidneys really take a beating. I was constantly urinating. The first drug they administered was a steroid, which the minute it hit my bloodstream, I felt an intense prickling sensation. Awful! Then I got a shot for pain and nausea. The Cystplatinum(??), the real kicker, was next, then came the andrymycin(??). I threw up several times, couldn't sleep and generally felt rotten to the core.
Now, the doctors are even getting worried. Nothing seems to be going my way. The tumor is getting larger, the drugs aren't working, I'm bedridden, and my leg has no sensation at all. The doctor is still anxious about this final dose of chemo. My alternatives will be radiation and if that fails to make positive results, they plan to have the operation sooner than was predicted. If that's the case the operation will be much more serious. I'm starting to wonder if I'm going to make it. Please, God, can you give me a break?
The ride back was very tough on my leg, but I knew the most difficult part would be trying to get up to my room. My leg immediately cramped up when I got out of the car. I used the crutches til the laundry room, but by then I was so exhausted I had to lie down and rest for a while. I crawled up the stairs and rested again, and then used the crutches again til I hit the landing and then crawled into my bedroom. My heart was pounding like never before by the time I reached my bed. God, was I ever in pain.
May 24, 1981
I'm back in NYC, living in Robin's apartment for tonight. Dr. Rosen now wants me to go into the hospital a day earlier.
Yesterday was Audrey's graduation. I bought her a nice plant and a bottle of champagne. That woman has been the savior of my life these past few months. I love her dearly.
Monday, May 25, 1981
I stayed up late last night reading the Bible and praying to God that I will get well again. I love to read the Bible, mainly because it gives me strength to hang on.
Cobalt treatments start tomorrow, heat treatments soon after. My white blood count was down, and waiting was unbelievable. Thank you, Eva, for the rosary.
May 26, 1981
Dr. Kim examined me along with another female doctor. They felt pity for me just looking at the pain in my eyes and noticing how thin my leg was. The plan is for hyperthermia and radiation. Treatments start tomorrow.
Laurie Zaks called. She wants to stop by. Jerry Maas, too, he wants to have a scotch with me. Harold Heintz gave me the rundown on all the Clinton gossip that he dug up over the weekend. He should be by also. Scott Maxwell is bringing by his chess set for a few matches, for old times' sake. My friends seem to care so much about me. Must mean that I was a good friend to them too. Now I want more than anything to be a better friend.
Called Sister Rosemary Moynihan. She's a social worker at the hospital. She's been a great inspiration for me. Anyway, I asked her how to learn to say the rosary correctly. She's going to give me some literature tomorrow. I want desperately to be closer to God, especially during this time of despair and uncertainty.
Friday, May 29, 1981
I've been bedridden for five weeks now. It takes the zest out of life when you're confined to a bed with nothing but your own thoughts to haunt you.
Monday I get another dose of chemo. It's supposed to work in combination with the radiation. Both types of therapy will be working simultaneously. I hope not to get blisters or burns, but I suppose it's inevitable.
My dreams at night are always about myself when I was well, and in great physical shape. On occasion I do dream about myself with cancer, but it's always when I'm fighting like hell to get rid of it. It's very hard to wake myself up in the morning when I'm having good dreams. I'm much happier when I'm sleeping. I wish God would come to me in my sleep sometime, and assure me that everything will be all right. That would be fantastic!
June 1, 1981
I had a dream about my dog Ziggy, who died last summer. I saw him last in the early part of the summer at a family reunion. I was well then. He was so happy to see me. I loved that dog so much. Now I think about him all the time. We were the best of friends.
I watched the Yankees get killed by Cleveland, 7 to 2. I'm getting more and more interested in baseball.
I said the rosary last night. I feel as though I'm not really all alone in this battle with my life, when I pray. Then I tried to concentrate very deeply, with my eyes closed, to will the tumor away. I don't know if it does any good, but it's worth a try.
June 23, 1981
I received the high dose of Methotrexate yesterday. It wasn't as easy as the nurse had promised me. I keep thinking that all this "POISON" in my system may be killing me faster than the disease itself. I'm thinking more seriously of pursuing macrobiotics as a means of curing me. It's so obvious to me that I haven't made headway with chemo, and macro seems like an only alternative. For sure I'd prefer to die peacefully than be used as an experiment for some egotistical doctor.
July 7, 1981
I often think of all the fun times I've had in my life so far. Playing golf with friends, laughing over a few beers. Jumping into a lake on a gorgeous summer afternoon, swimming at the Hamilton College reservoir, and walking in the woods behind the campus. There were so many things I enjoyed doing, sometimes by myself, or sometimes with friends. I would love to do these things again.
Thursday, July whatever?
My body is ravaged. I'm totally devastated. I spent Monday and Tuesday in the hospital because I had such terrible diarrhea and nausea. The doctors are really running me through the mill. The tumor, thank God, is shrinking, but so is my body. I'm down to a mere 130 pounds.
July 12, 1981
I've got radiation sores which opened up. No more of that til they heal. The sores caused me to have a temperature of 103, so then I was put on antibiotics. Began physical therapy for my leg in the early part of the week. The doctors say that the loss of mobility in my leg will be permanent. The TPN (nutrition) lines fell out of my shoulder, which meant another painful incision had to be made. Since then I lost another 4 pounds. Now I'm down to 118 pounds and weak as hell. The tumor has shrunk considerably, so they say.
I had a CAT scan done on Wednesday. The results were good but not good enough. It's still too large to perform the surgery. It is pressing against the rectum, which means eventually part of the rectum will have to be removed. If that happens, I may have to have a permanent colostomy put in. Dr. Lane, the surgeon, said he'll also have to remove two- thirds of the sarcram (??) bone because the cancer has spread into the bone as well. A skin graft will be necessary, and more loss of mobility in the right leg is expected. The whole operation is very, very serious. Dr. Lane said there's a chance they may not be able to get it all and in that case I'm going to die. After the doctors left the room, I cried for a long time. I have no choice but to go through with it, and hope to God that he will see me through.
Oct. 14, 1981
I am lying in bed, at home in Clinton, recovering from exploratory surgery in my abdomen. As I lie here in bed, alone in my room, I'm plagued by thoughts of how much time I have left to live. The doctors at Sloan-Kettering made a final decision not to go after the tumor. The risk would have been too great and the physical consequences devastating to my body. I would have ended up like a zombie, if I survived the operation.
My hospital stay was another nightmare. Surgery was delayed three times. The tension and anxiety that I felt was equally as painful as the physical pain. Prior to the operation, the rectal surgeon consulted with me. He spoke frankly of all the possible permanent defects that would result from such a serious operation. I'd have no bladder control, total loss of mobility in the right leg and partial mobility in the left. I'd also be impotent for life and have to deal with a permanent colostomy. I was totally devastated! Immediately I phoned my father and explained, as best I could, the bad news. The decision to have the operation was left pending until he arrived the following morning.
Despite the consequences and the risk involved, I decided to go for it. It was understood, though, that if it looked impossible, I didn't want them to play "hero."
For three days after the operation, I wasn't moved from my position. I was in unbearable pain, and was given morphine shots every two hours 'til it subsided. I was so doped up, I didn't care about anything. When I finally did come around, the question of what they planned to do next was on my mind.
Two days later, Dr. Rosen came into my hospital room and said he wanted to implant radiation seeds in me. I would have to be in a confined room for at least a week. No one would be able to see me during that time because of possible exposure. The whole idea was scrapped by the radiologist, because he said the tumor was still too large.
Another three days passed, and suddenly, without warning, Dr. Rosen comes into my recovery room, and in the presence of my visitors and two student nurses, he callously explained my options. He was adamant about having my right leg cut off at the hip. He said, "It's a must." This news really blew my mind. I was so upset I didn't have the energy to give him an answer, nor could I cry. I knew though that I could never go through that operation. I'd kill myself before that happened.
On Monday morning, Rosen was back, waiting for my answer. I told him to forget it. He said, "You'll only have to go through with it later on, and by then there will be no chance for you ." My reply was, "I just want to go home and die in my own room, and I want to do it without your help." So that's exactly what I'm doing now. It's absolutely horrible living with my thoughts, knowing full well that my time is limited. Soon it will be all over. For a guy who really loved life, it's difficult to comprehend that it's going to end sooner than was ever imagined. I'm helpless against this horrible disease.
Believe it or not, I haven't given up yet! Macrobiotics has worked for other cancer patients, and maybe, just maybe, it can save me. Tom's wife, Debby, is cooking meals for me. My diet consists of a few raw grains and native vegetables. Everything is so bland that the diet is very difficult to digest. But it's my one last chance, and I've got to go for it.
This is the journal's last entry. Rod Burns died at home on Jan. 27, 1982.