Eveyln MacDonald – Stage III Non-Hodgkin’s Lymphoma
My name is Evelyn MacDonald and I was 49 years old on May 2 of this year 1998. The following is my best attempt to tell my story.
Back in the summer of 1994 I was waking up each morning feeling like I had a bad hangover. I thought this a little suspicious due to the fact that I had not had a drop of alcohol. One morning in August I was scratching my back and noticed a small mosquito size lump, but did not really think to much about it. Life goes on. I started back to work in September 1994 because I work for the board of education. During that month I noticed I was waking up with extreme night sweats. I put this down to the beginning of my menopause. I was also extremely tired all the time and fell asleep at the drop of a hat. It was in November of that year that I began experiencing some strange feelings in my right foot. It felt like it was numb in parts of my feet.
At Christmas time my husband, bless him, felt that I should go to have a check up. I now had several small pea size lumps on my back and a few bigger ones on my stomach. I made the doctors appointment, explained to the doctor all of my symptoms and showed him the lumps on my back and my stomach. First of all he said that the lumps were just swollen sweat glands and they were nothing to worry about. He had seen many patients with this type of problem. He advised me they would go away by themselves in a few weeks. He also advised I have some blood work done thinking that my tiredness and night sweats could be due to a thyroid problem. I did just that but, the blood tests showed no abnormalities. I was still feeling extremely tired all the time the lumps were now developing all over my back. My foot pain was getting worse and worse.
I went for a complete physical in January of 1995. The doctor again said the lumps were my sweat glands, the night sweats were the beginning of menopause and we were still trying to discover the sensations I was having in my feet. more blood tests revealed nothing. The doctor gave a drug call premarin or estrogen. She said in two weeks I would notice a considerable difference in my night sweats and have a lot more energy. She was wrong – the medication did not do anything for me. Feeling worse and worse every passing day, I returned to the doctor for one more series of blood work. It did reveal a couple of things, one that my hemoglobin was at the low end of the scale and my red blood cell sedimentation rate was high They really did not know the reason for this but it was abnormal.
I returned home from the doctor that afternoon feeling very discouraged and frustrated. I knew in my heart something was extremely wrong. The pain in my right foot had now moved into my left foot as well. As I was sitting at my kitchen table I put my hand on my neck to hold my head up and discovered a very small lump. Becoming extremely concerned I immediately returned to the dr. and she examined me. The news was not good!! The big C word came into the picture.
She immediately set me up with a specialist to have him look at the lump. The BAD news starts. He examined me carefully . He examined under my arm and found another and he also did not like all the other pea size lumps he had found on my back and stomach. he scheduled a biopsy to be done the following week, that was in late March. I remember waking up in the recovery and finding the doctors hovered over me. Mrs. MacDonald you have non Hodgkin’s lymphoma. The rest of that conversation is somewhat of a blur. I believe I was in shock and really did not know much about the disease.
My husband picked me up from the hospital and I remember driving home with him saying Steve I have cancer. We cried all the way home and many hours into the night. We just felt this was not happening to us.
April 1995, my husband and myself and my oldest son David (22) had a trip planned to Phoenix with a stop over in Los Vegas. The tickets had been paid for a long time, so we could not postpone the trip. But I was to enter the hospital the day we returned to have many, many tests done to discover where the cancer was.
I remember how horrible I felt physically and the fact that I had just been told I had non Hodgkin’s lymphoma. But not wanting to disappoint the family I treaded on. My husband was very worried and wanted me to go on the trip and have perhaps one last fling, no one knew at this stage what life had in store.
The trip was somewhat of a blur, I was in a great deal of pain with my feet and had to be pushed in a wheel chair most of the time. I tried my best to be fun and not think about the weeks that lay ahead of me. We did not inform the children yet of the news for I did not want to upset them. I know deep in my heart that they knew something was very wrong but were afraid to ask.
I was extremely ill in Phoenix, I laid in bed most of the time while my husband and son tried to enjoy some of the exciting things to do in Phoenix. I woke up in the middle of the night two days before we were actually booked to come home. I was overcome with chronic pain in my feet – the pain would not go away. I informed my husband that I must get on the first flight back to Calgary and admit myself to the emergency room at the hospital to find some relief from this agonizing pain. We were able to catch the next flight home leaving at 7 am. Thankful to be home I went to bed, took some Tylenol and went to sleep for a few hours.
The pain became so bad that I could not wait for my scheduled admittance to the hospital that was the following Monday. My husband rushed me to the emergency room that Saturday night. This is somewhat of a blur because of the narcotics that were administered to control the pain. But I do remember looking over at my husband several time who was sitting by my side and feeling warmth and love from him being with me. It was a very long night and they admitted me around one in the morning. I sent my husband off with a kiss and told him how much I loved him and how scared I was.
Sunday I drifted in and out of consciousness. My husband visited most of the day holding my hand I was in severe pain and could not walk.
Monday morning the doctor came in and the testing began. I do not remember much about those days as I was extremely drugged most of the time. I was in the hospital about 1 week. They had discovered I had non Hodgkin’s lymphoma in I think stage III. The bone marrow was fine and none of the cancer had spread to any other organs or tissues. Just some of the lymph nodes. Finally a little good news. The doctors were still very puzzled by the pain I was having in my feet.
The chemotherapy was scheduled to start around the beginning of May 1995. I was to have 6 bouts of chemo, with several different drugs administered. There was about a 3 week wait between each treatment. I did not have to much trouble with the side effects of the regular treatments. A little nausea and tired , no appetite. But was surprised – I had expected to feel worse. The feeling in both of my feet had gone out of control but the doctor hoped that after the treatments my feet would gradually start to feel better.
After the second treatment I received some incredible bad news. The tumors were not shrinking the way the doctors had expected. He felt that this treatment was not going to be able to control this very aggressive cancer. I was heart sick. He Explained to me about a new clinical trial they were conducting at the Tom Baker Cancer Clinic, luckily here in town. He felt that I was a perfect candidate for this cancer research trial. He sat down and explained in detail that this treatment consisted of two high dose chemo treatments followed by a bone marrow transplant.
He explained to me and my husband exactly what would take place and how many complications could arise. I was scared to death. At this time my husband and myself felt that we would like to avoid this treatment if necessary.
At the end of May that year I was at home alone after my second regular chemo treatment had been administered. I started to get severe stomach pains and felt like I was constipated. As the evening progressed the pains got worse and worse. I was doubled over at this time. I phoned a good friend and asked her to go to the drugstore and by me some suppositories hoping this would do the trick. My family were all gone for the evening. She did this for me and said how terrible I looked. I said I just wanted to be alone. Worried and concerned she did not want to leave me alone. I encouraged her to go and tried the suppositories. Nothing helped. At 8 pm. I was forced to call 911 and was taken by ambulance to the hospital. The paramedics thought I had food poisoning. I remember being in agonizing pain and screaming. The nurses came in and said I was scaring all the other patients. They administered strong doses of morphine and I drifted in and out of consciousness the rest of the night. I remember waking up finding my loving worried husband beside me. The doctors were there explaining after doing several tests that they felt I had a bowel blockage and scheduled me for surgery at 5 am the next morning.
Apparently the surgery was a success. After opening me up they discovered part of my large intestine had become wrapped together in a knot. They straightened it all out and put it back in place. The doctors said this was apparently a birth defect. I could not believe after 48 years I would have trouble with this now. Not cancer related at all.
The worst problem was that I had just undergone my second dose of chemo two days prior and my resistance and immune system were low. I ran a high grade fever for about 1 week. Finally I was released to go home and I actually felt pretty good.
During the summer I became extremely ill. I was told to see a doctor specializing in chronic pain at the cancer center. I cried and cried because of the pain from my feet. They had me on morphine for a while but that did not help it just put me to sleep. I prayed to God to please help me and spare me the pain or at least make it tolerable. I kid you not, God answered my prayers. The next day the pain slowed from a pounding ache to a tolerable level. I thank God for him listening and helping me at this time. The hospital was able to find a drug called dilaudid that helped control the pain level somewhat as well. My feet were still numb and I was unable to walk, I was bed ridden most of the summer. In August I had to make the decision about the clinical trial. I had a meeting at the cancer center with a number of doctors who explained exactly what was going to happen. First they had to put ia a central intervenous tube in my chest because of all the IVs I would have to have. This sounded scary enough. But it got much worse. They informed me at this time that if I did not choose to proceed with this clinical trial I had only two months left to live. Other information received was that there were only 20 people allowed to do this trial I was number 16. Four people who had chosen to go ahead had died during the treatment. They told me how incredibly sick I would become. Explaining the nausea the mouth sores, and all the complications that could arise. Then they explained the bone marrow transplant that I would need after my second round of high dose chemo. I left the doctors office scared shitless. I basically had 3 days to decide which route to follow. My choices were to proceed with the experimental trial and all the risks involved, or simply go to pain management who would help to make my last few months tolerable. I remember my husband telling me that we had to pursue this as our only alternative because the other choice was to do nothing and just watch me die. This all seemed like it was a nightmare I kept hoping I would soon wake up.
Because of the strong love of my husband and two grown children I found the strength to carry on and have the high dose chemo and BMT.
I was admitted the middle of August 1995. The chemo was administered by IV over a 24 hour period. I thought I could not feel any sicker than I had previously, but boy was I wrong. There are a lot of things I do not remember because I was so drugged up. I do remember my husband calling every hour from his work and seeing me everyday. I remember him crying at my bedside praying I would be o.k. He was in shock to see how sick I really was. The doctors had tried to prepare us, but nothing could have prepared us for the road that lay ahead. I spent three weeks in the hospital fighting infection after infection. Finally I was released to come home to recover enough to have my second high dose treatment. Upon one of my visits between the first and second treatments it was discovered what they thought to be a new lump. The doctors seemed very discouraged by this news and ordered a new cat scan. They felt if this was the case there was no need to continue with the second phase of this treatment. I left the hospital totally devastated by this news. Feeling I had gone through this for nothing. After reviewing the cat scan it was found that some of the tumors had shrunk considerably while a few had enlarged over a short period of time. After a meeting with the doctors and the nurses it was decided to continue with the treatment, because there were no other options at this time. It was at that time that they took my stem cells and froze them to be later injected after the second high dose chemo that would kill all my bone marrow. It was at that time I dreamed of suicide and the best way to do it. I pictured myself in my vehicle with the garage door tightly sealed. I lay awake nights trying not to think of my family discovering my body. But all the fight was drained out of me. The news got better . Immediately my tumors began to shrink. I had horrible mouth sores and lost about 25 pounds. All I could do was sip at some ginger ale. I could not eat anything at all.
I entered the hospital the second week of Sept. for my last high dose chemo treatment and my BMT. I remember the nurse had this huge needle to stick in my arm. I said, “Oh God here comes the bad stuff,” and she looked me straight in the eyes and corrected me, saying this is not the bad stuff this is the good stuff. She informed me that the last person she injected this drug into, she was going to marry 2 weeks from today. This gave me a real boost and I looked at her as if she were my guardian angel. She proceeded to tell me her story and it gave me great confidence in the procedure that was going to follow. The injection took no more than 1 minute. I lay there thinking of this medication in my body killing off the cancer cells one by one. The next morning I received my bone marrow. It was extremely successful, but must confess that I really did not realize all the complications that might have arisen until after the procedure was over. I think that was a blessing actually.
The following day I became deathly ill. I threw up for 48 hours straight. I had no bowel or urinary control I was so ill I was hallucinating. I was on so much medication my brain went into over time. I called my husband at work and told him he had to pick me up and take me to the funeral, and asking all kinds of questions regarding the service. My husband said to me, “Ev Who died?” At that point in time I was brought back to reality for a moment and said my dad. My dad has been dead since 1981, God bless him. For the rest of that day, I dressed and undressed several times finding myself floating in and out of reality, not knowing what I was actually doing. The sickness from this dose made me 5 times as ill as the first dose did. The mouth sores were worse, everything was worse. My husband was horrified to see me he thought I might die everyday as he left my side to go home to our family. Some times I do not know which is worse, actually going through the ordeal itself or watching your loved one going through it!
Over the next week I gradually began to feel a little better day by day. Still sipping on ginger ale and ice because of the horrible mouth sores, having to gargle and disinfect every 2-3 hours. All I could think about was getting home to my family and my own bed. I was allowed out for a few hours each day, so my husband would pick me up and take me home for a few hours to be with my family. I was not able to do much but sleep but it was so peaceful to be at home without nurses taking blood or disturbing me every 10 minutes. Finally at the end of September they released me with promises to come back everyday so they could check my blood and counts etc.. I complied. This continued for awhile and than I only had to go back every week and than every two weeks and than once a month . The doctor was extremely pleased with my results. He felt I had done far better than he had expected. My foot problem still remained and I made numerous visits to a pain specialist trying numerous medications to help with my pain. Nothing seemed to work. We finally found a drug called neurotin which somehow calms the nerves so they do not send out the messages to the brain. The doctors discovered that the pain in my feet was caused by the swelling of a lymph node in the pelvic region that caused nerve damage in my back. The doctors reassured me that these would heal themselves but it could be a matter of years, maybe three or four.
Update: May 1998
This is now May 1998. My cancer is in remission, all my tumors have disappeared, and I live a good life, not to the point that I was at before all this happened but I am thankful I am on this earth. I tire very easily and still have to take dilaudid and neurontin. I hope that one day I will regain the feeling in my feet. I have some other aches and pains that I am not sure of the cause but am anxious to talk to others who have gone through an experience like this. I hope this gives new light and encouragement to others who are looking for happy endings. God Bless you all.
Update: January 2002
I am very happy to report that I have just seen my oncologist for my last check up. The cancer never returned and the doctor gives me an almost 100% guarantee that I have beat the horrible disease that threatened my life back in 1995. As I sit here and re-read my story, I truly feel like I am living proof of a miracle. I have heard from many people over the past years and am thankful that I have had the opportunity to give many people………. hope, faith, comfort, and answers for such difficult times… each and everyone of you may be experiencing. Over the past years I have gone through a very difficult divorce and emotional difficulties not cancer related. Once again, I triumph. I am presently working 6 hrs. daily at an elementary school as a teacher’s assistant. Both of my boys are living with me. I still have a difficult time with my feet due to the damage done to the nerves, caused by the 10 cm. tumor in my stomach. I still have faith that one day they will return to normal. I take neurontin three times daily along with dilaudid. I am hoping to talk with my doctor and see if I can replace the dilaudid with something that does not cause sleepiness. My main difficulty now is my constant feeling of fatigue. I still am not able to climb mountains, but I thank God that I have the wonderful life that I do. I wake up each morning and try and make the most of each day. I will continue to offer hope and support to the people who wish to write ………… God Bless. Evelyn
I would be happy to hear from anyone out there who is willing to share their experience with me. Please contact me, Ev. My e-mail address is [email protected]
This CancerGuide Page By Eveyln MacDonald. © Eveyln MacDonald
Page Created: 1998, Last Updated: February 2012