Back to Page 1May 31,2002…Joe notices a large mass low on the left side of his neck while shaving.
June 1… Joe goes to our family doctor, he is sent for a chest x-ray.
June 2… Joe has a CAT scan of his chest and neck. He is told that he as lung cancer.
June 4… Joe has a needle biopsy of the mass on his neck.
Joe is fifty years old at this time, and as far as we knew, in good health. He has not been for a physical for eleven years. He had no symptoms of cancer prior to the mass appearing on his neck.
June 11… Joe has an appointment with our family doctor to go over all tests that have been done. The doctor refers him to the Massey Cancer Center in Richmond VA.
June 14…Joe has an appointment with Dr. Baker at the cancer center. He goes over all prior tests, examines Joe and sends him for a CAT scan of the brain. Joe has three tumors in his brain.
This is why Joe has been having headaches, we though he had allergy/sinus that was causing the headaches.
Dr. Baker says Joe has Stage IV, late stage lung cancer, adenocarcinoma. He tells Joe there is no cure, but a 25% chance of controlling the cancer for a while with chemo and radiation treatment. Joe will have chemo every twenty-one days for six treatments. Without treatment he has one to six months to live. Joe feels he as no alternative, he will have both treatments. He wants to live as long as possible. Dr. Baker tells Joe to file with social security for disability. Dr. Baker prescribes oxycontin for the pain Joe is having in his head.
FEELINGS: Our entire life has changed in one day. We are afraid, this will be an adventure we did not expect or want to take. How does a man go from working every day of his life for thirty-five years to be disabled? This battle is going to be the hardest thing he as ever done.
I am numb, emotions are running wild. I want to scream, but don’t. I do not cry, I am just numb.
June 17… Joe has MRI of his brain.
June 19… Joe has an appointment with Dr. Song, radiation oncologist. He tells Joe of a new radiation, pinpoint radiation. It is an option instead of whole brain radiation. He explains that whole brain radiation will cause some side effects, and the pinpoint usually does not. Joe opts to have the pinpoint radiation. One of the side effects that may happen with the pinpoint radiation is seizure. Dr. Song prescribes decadron to prevent Joes Brain from swelling during the radiation.
June 20…Joes has his first chemo treatment. It is a mixture of taxel and carboplantin. He is also given benedryl to prevent an allergic reaction. The chemo treatment takes three and a half-hours. Joe has no side effects from this first treatment.
June 24…Joe has a mold made of his entire head for the radiation treatment. It is made from a type of plastic, and Joe jokes on the way home about the mask, and how it was made.
June 25…Joe has the first of three brain radiation treatments. He will have them for three days in a row. They strap him to an ex-ray type table and with his mask on put a box looking device on his head. They then use a laser looking lights to line his entire body up how they need it to be. The treatment takes about thirty minutes. Joe has no ill effects from this treatment other than he is very tired.
June 27…The last radiation treatment, Dr. Song arranges for a brain MRI to be done July 31, it will show if the radiation worked and starts Joe on a schedule to reduce the decadron until he is no longer taking it.
July 4…. Joe’s hair is falling out; he is very upset by this. I shave off the hair that remains, Joe is more comfortable now, but is self conscious about being bald.
July 11…Joe has his second chemo treatment. Dr. Baker’s physician assistant sees Joe and believes the mass on his neck is smaller. Some good news even if it is small. Joe has developed a rash on his legs; she prescribes Allegra and a topical ointment. Joe’s lab work is very good.
While I do not remember the exact date it is somewhere after the second chemo that Joe begins to feel the side effects of the treatment. His muscles in his legs ache, it is hard for him to stand and or walk. He is still able to eat good at this point. But in general does not feel good.
July 18…. Joes has a chest CAT scan. Joe is very nervous about waiting to see Dr. Baker on July 30 to hear the results of the scan. He try’s not to think about the cancer, but it seems to be all he can think about. The ordeal is mental torture for Joe, and I feel so bad for him. He does not want me to tell the rest of the family how he is feeling. And I don’t.
July 30…Joe has his third chemo. Dr. Baker feels the scan shows a very slight shrinkage of the mass in Joe’s left lung. Joe will continue will the same treatment. We are glad to hear some good news.
The bad news is Joe is very sick, from the chemo. He is sick to his stomach and vomits several times a day. He is very week, and can hardly stand up by himself. His legs ache constantly, and his feet go numb on and off all day and night. He is not able to taste food, everything tastes like metal. And if food does not taste like metal, it just not taste right.
Joe is a good actor; he does not want any of the family other than me to know how bad he feels. He puts on a good act when any one comes by to visit. Even in front of the children and his mother.
July 31… Joe has MRI of the brain.
August 5… Joe sees Dr. Song the radiation was a success. One tumor is gone, one is almost gone, and one is under control. GREAT NEWS! Joe will continue coming off of the decadron. He will not need a brain MRI until November 5.
August 20… Joe has forth chemo. He faints during the treatment. Nurse can find nothing wrong, blood pressure is good. Etc. Joe does not feel good after the treatment and sleeps the entire trip home.
August 21 … Joe is really sick, vomiting, cannot eat, and his muscles ache badly. He sleeps most of the time. He say’s he feels useless. Dr. Barker said that this is the normal side effects of chemo, and tells Joe to increase the pain medication.
August 24…FEELINGS: The last three months have been the hardest, yet one of the best times of our marriage. We are closer than we have been in years. I am so sad. He is miserable most of the time. But he keeps fighting. One of the hardest things is that he needs to occupy his mind and there is not much he can do. He feels useless. He said to me that he can barely stand the effects of chemo. He knows that he has no chance without it. I wonder if he as any more of a chance with it. Today is our son’s birthday, Joe says he wonders if he will be here for the next one.
August 27… We get a call from Dr. Baker. BAD NEWS. The CAT scan shows no improvement and in fact the tumor is getting larger. No more chemo treatments, is not working. Joe will see Dr. Baker on September 9, to discuss radiation treatment. There is a 50% to 70% chance that it will control the tumors for a while. He will see Dr. Son on this same day.
August 30… I get on the phone and call several offices of protocol at different cancer centers across the country… I am told that Joe is getting the newest treatment. There is nothing else going on medically that will help him. I search the web; again I find that Joe is getting the most up to date treatment. No one feels it is Joe’s best interest too travel to any hospital to be evaluated. How many times can a person stand to be told that you are dieing and there is nothing that can help you?
September 9… Joe sees Dr. Song, he explains about the lung/neck radiation. There are many side effects that can happen, to include… being tired a lot and sleeping a lot, skin redness like sun burn, breathing problems, possible pneumonia, weight loss, sore throat and moth sores, and soreness of the left ear.
Joe decides to have the radiation treatment. The put tattoos on him, and this takes two hours. Joe was very uncomfortable during this procedure.
September 11… Joe has the first of twenty radiation treatments. The will be given for twenty days straight not to include the weekends. Joe is on and off of the decadron and is not eating much or drinking enough either. Things still taste like metal.
September 24… Joe is having side effects for the radiation; his throat is very sore, hand he cannot eat. He is still vomiting several times a day. Mostly spits up phlem. Sometimes Joe gags for thirty minutes straight, he is very weak. The side effects of the chemo are still very much there as well. Dr. Song gives Joe a liquid medication to drink that should help with the throat swelling. It does not help.
September 25… Joe is miserable, he talks with Dr. Song about the radiation being worth the side effects. Joe’s quality of life is very poor. Dr. Song feels the treatment will be worth all the misery in the end. He gives Joe a different liquid medicine that will numb his throat. It helps slightly. Joe is also on Megace, to increase his appetite. His voice is awful, when he can talk. Our grandson is afraid of Joe now because of the way his voice sounds. This is awful and very hard for Joe.
September 27 Joe has now developed a bad rash on his back from the radiation. We wonder what will happen next. Joe is miserable.
FEELINGS: I feel so bad for Joe, he is so very miserable. It is hard for me to watch him go thru all of this. I wonder if the treatments will bake that much of a difference in the time he has left. I hate every day of this battle. It is so very hard, on all of us. I pray a lot for a new treatment, for Joe not to be so sick. And even that it will end soon.
September 28… Our son got married today. Joe was able to be there thru the ceremony. But got very sick to his stomach right after, his Mother took him home. We are all so worried about Joe. Glad that Joe could see Jason get married, but his illness put a cloud over what should have been a joyous day.
October 4… Joe has become dehydrated; we go to Richmond and Dr. Song give Joe four bags of IV fluids. Joe feels and looks better after this. Radiation is discontinued for a week and a half. Joe is in too poor of condition to take the treatment. He is down to 134 pounds. He looks and feels terrible.
October 7… One of our best friends died today of cancer, adenocarcinoma of unknown origin. His cancer was just discovered in August. Joe is very upset; his friend was in a lot of pain prior to death. Joe wonders if he too will be in terrible pain. I assure Joe that I will have hospice when the time comes and he will not experience any pain.
October 11… Joe insists on going to our friend’s funeral. It is so very sad. I wonder what Joe must be thinking and how he is holding up as well as he is. I look at our friend’s wife and can’t help but think it won’t be long until it is I up there beside my husband’s casket.
Oct 14…Joe restarts his radiation treatment, he had been given a week off due to his poor condition. The last eight treatments will be to the mass on his lower neck. He is very sick, cannot eat, and has lost quite a bit of weight. Joe is now take Zofran, for the nausea and is given Adivan to help with his nerves. This is an addition to all of the other medications. The Adivan is helping Joe, but he looks drugged and he is.
Feelings…Joe is talking now about his death. I think he knows it will not be long. He has done this before but not to this degree of intensity. He worries about what will happen to him. How I will get a long without him. How our children will handle his death. And that he really wanted to see our grandsons grow up. He hates that his Mother will out live another one of her children, his older brother died at the age of 22. He feels guilty about leaving us. This is so very hard to hear. Joe changes the payment option on his disability pension so that I will receive more money after his death. He knows that he will not outlive me.
He asks me if it will be ok with me if he dies at home in his own bed, if it will bother me. I assure him it will not. He says he does not want to die in front of our children or his Mother; he wants only me with him when the time comes. I tell him, I will do my best to see that this is they way his death will occur.
Oct. 25… We did not go to Richmond for Joe’s treatment. He is just too sick to make the hour and fifteen-minute trip. He is sick to his stomach and very constipated. He uses an enema in addition to the stool softeners that he has been taking all along. Joe finely has a bowel movement, and then gets diarrhea. He is miserable. He stays in bed all day, and tries to stop taking pain meds; he feels they are causing the bowl problem. He starts withdrawal symptoms, and is really in pain. I talk him into taking the pain medicine and he feels better by night. I talk him into taking the pain medication and he feels better by night. I wonder if the cancer is now spread to his bowls and stomach. I talk Dr. Song on the phone; he wants Joe to have a CAT SCAN of his abdomen.
Oct. 29…Joe has the last of the twenty radiation treatments and the CAT SCAN of the abdomen. We will get the results tomorrow. I pray that the results will be good, but somehow I know they won’t be.
Oct. 30… Dr. Song confirms my thoughts; the cancer is now in Joes liver, stomach and pancreas. There will be not more treatment. Joe will see Dr. Baker on the 4th of November. Just to see if there is anything else that can help.
Nov. 4…. Joe sees Dr. Baker, his brother and our children make the trip with us. There is nothing else that can be done. Dr. Baker says Joe has a month left, and sets up hospice for him. He gives Joe a prescription for Morphine, as the oxycontin is not working anymore.
Nov. 6…Dr. Baker calls and he has reviewed the last CAT SCAN films and does not know how Joe has not been bed ridden at least for a month or two. The cancer is everywhere in his abdomen.
Nov. 9…Joe is admitted to the hospice program. They will take over all of his care here at home. They change his medicine and put him on some different ones. I will be his main caregiver and will have to monitor all medicines.
Nov. 12…Joe went down hill over night. He is confused and seeing people and things that are not there. He knows all of us, and at time is very lucid. I call hospice and they tell me this is coming from his liver shutting down. I did not know liver failure could affect a person’s mental capacity.
November 18… Joe went into a coma last night; he fell asleep at about 9:30 with our son beside him in his bed, and never woke up again. Prior to this Joe was very confused. He said many things that led me to believe he was reliving most of his life. He constantly thought he was at work; he was a pipe fitter, our son and son in law work “work” with him as he was sitting in our bed. He kept saying to me that he wanted to go home. This I believe was him referring to the fact that he was dieing. And that he was ready. He talked often about past things and people that we had not seen for years, like it was current. He would not stay in bed and we walked with him many times at 4:30am in our yard.
Hospice was amazed that he was able to get out of bed during this time. They also told us three different times that he would not live though the next week, and the then the next day.
Nov 21…Joe died today at 3:30pm, the time of day he usually got home from work. He died quietly in his own bed with me holding his hand. No one else was in the room, just as he wanted. He did not struggle or gasp, and he showed no signs of being in pain the last three weeks of his life, he just quit breathing.
March 26… It is four months now since Joe has died. Looking back I have only a few regrets about his last months…
Joe himself told me that had he know how sick the chemo was going to make him he would not have taken it give the percentage of 25% that it would help. And he wondered if he would have had a better quality of life without it. But when someone tells you that you have a terminal illness it is basic human nature I believe to do anything that might give you a chance of helping. As Joe said “he had to try.”
I regret that the cancer was not found sooner, However Joe had no symptoms until the mass on his lower neck appeared. From what I have read this is usually how this type of cancer is found. When it is too late.
Joe and I and the entire family was put to the “test” many time during Joes battle with lung cancer and in many different ways. I know we all did a very good job of meeting this test head on.
I was able to take a leave of absence from my job and stay with Joe from the first day until his last. This means more to me that I can put into words. Joe needed me and I was able to be there for him every day.
I recommend… to anyone having a family member that is terminal to spend as much time as you can with that person. While knowing you are going to die is not a good thing, it is good when you have time to talk to your family and friends to say all of the things we forget to say in our busy everyday lives.
To do research as often as possible on the illness, you will be surprised of all of the information that is out there, and to join a support group on the web or in you local area. These are very helpful, and provide information that you may need. You will also be able to make friends with some very good people.
In the case of cancer go to a teaching hospital as soon as possible after a diagnosis.
To use hospice at the earliest time possible, that way the patient and their family get to know the nurses, and the program that they provide.
