One of the hardest things to do in life is to live once you've been told you are going to die. It's as if life speeds up after you receive knowledge that your days are ticking away on a finite clock that you have no control over. One important thing that I learned while experiencing the devastating affects of Pancreatic Cancer with my mother as she fought this distressing disease is that it is crucial to focus on the time that you have rather than on the time you don't have. To me this article is a condensed version of the Diary of Cancer Patient's Daughter as I explain what living with Pancreatic Cancer is like from diagnosis to death as I framed the picture of my mother's experience in my mind.
I hope and pray that you receive something out of these words birthed out of pain that will bring you peace and help you or your loved one with a Cancer diagnosis live a little longer and happier in spite of the sad reality you are facing. There are 7 D's in this Cancer Diary that can help you manage the physical and mental aspects of this awful disease. Remember that what you don't do in the Cancer Crisis is just as important as what you do.
Entry # 1: The Diagnosis:
My mother Joyce was 66 years old when she was diagnosed with Pancreatic Cancer during the summer of 2008. Though all Cancer is bad, Pancreatic Cancer is considered one of the worst because it is the most difficult to diagnose. The reason is that the symptoms mirror digestive problems as the disease hides in the depths of the digestive system. My mother had chronic pain in her stomach and though she went to the emergency room several times receiving numerous tests and ultra sounds the doctors kept telling her nothing was wrong with her and sent her home every time. Initially they thought it was a problem with her gal bladder which is a common misdiagnoses in the case of Pancreatic Cancer.
Her Father Boyce whom she was named after died of Pancreatic Cancer 20 years earlier, but the chance that she could have that very same thing never occurred to her or anyone else in our family. If Cancer runs in your family, especially Pancreatic Cancer, I would advise you to have regular screenings for this disease as early diagnosis is a key to survival. One of the most deadly things about Pancreatic Cancer is that because it is so hard to diagnose most patients don't receive their diagnosis until they are already in Stage 4 of the Cancer when there is practically no hope.
The symptoms of Pancreatic Cancer include: abdominal pain and pressure, jaundice, nausea, loss of appetite, depression, weight loss and weakness. My mother had all symptoms except for jaundice. Just because a person is missing a common symptom doesn't mean they don't have Pancreatic Cancer. The most common procedures used to diagnosis this brutal disease are: Ultrasonography, CT Scanning, Endoscopic Retrograde Cholangiopancretography, Endoscopic Ultrasound, MRI, and Cholangiogram Percutaneous Transhepatic. I'm pretty sure my mother had all of these tests done and it can be very draining to endure such experiences, however it is vital in obtaining a diagnosis. The results of her diagnosis showed that there was a tumor on her pancreas blocking the flow of bile from her liver, as well as, the flow of enzymes from her pancreas. In her case the tumor was wrapped around a blood vessel and surgery to remove the tumor was not really an option. Very few surgeons in the country would have been able to successfully perform the surgery and her chances of survival would have been slim to none. Even if she had of had the surgery her quality of life following it was questionable. This surgery is commonly known as the Whipple Operation and removes a large part of the pancreas, the duodenum and a portion of the bile duct
What do you do in this situation? You make the choice to live the best life in the time that you have which is undetermined and different for everyone. Suck every drop of joy out of life you can as quickly as possible. If we could turn back the clock and do it all over again the one thing we would do differently is have annual screenings for the disease conducted because had we done that my mother might still be alive today. What you do in time can determine the time you have on this earth.
Many people allow the hands of time to cover their eyes to what they don't want to see. Open your eyes today and if you have not been diagnosed with this disease begin to use preventative measures such as a healthy diet, exercise, and regular checkups with your doctor.
Entry # 2: Denial:
We were in such disbelief after receiving the diagnosis we failed to take immediate action locked in the paralysis of our new found reality. One thing Cancer does not give you is time. That big devil called denial must be dealt with. I can still hear my mother saying, “I can't have this…not me!” You must come to grips with what you have in order to get a grip on the situation. Sometimes I think of Cancer being more of an accident of health rather than a mistake of nature. All you can do with a mistake is wish that it never happened but accidents can be prevented. Maybe this is a little optimistic since Cancer tends to creep in like an unexpected thief to steal your most prized possessions. Even so, optimism is always stronger than pessimism and it merely means that our powerful spirits encased in a fragile frame of flesh chooses to live.
Even people with diseases such as drug addiction and alcoholism must come out of denial before they recover. I know Cancer survivors and they are the same people that came out of denial and dealt with the disease. You will never take action in regards to something you don't believe.
Entry # 3: Drugs:
We live in a pill popping nation where there is a drug for every situation. One of the main problems with drugs is that they mask symptoms but fail to provide a cure. Drugs do their best to cover up the Cancer until the victim is covered with earth in a coffin. I keep hearing rumors that there is a cure for Cancer but the medical and funeral industries are making too much money off of the disease to release the cure. I don't know if that is true but it sure makes sense.
Though drugs were diagnosed to help my mother one of the first things we did which is extremely important for Pancreatic Cancer patients was to have a stint put in. Stints were inserted into the tubes leading from her liver and pancreas to help them function and this helped her to live a better life. In some cases, depending on the size of the tumor, it is very difficult to insert stints but there are several alternative methods and procedures to accomplish the same effect. If you have a good doctor he will inform you of all options. If you have a doctor that doesn't tell you all the options; get another doctor.
My experience with a mother with Pancreatic Cancer perfected a hatred in me for Morphine which is the pain medication my mother was put on. Since the pain caused by the Cancer is so intense our options were limited and we wanted my mother to be able to live out her days as pain free as possible as I think anyone would. The Morphine altered her mind, changed her personality, and caused aggression and paranoia. The effects of the Morphine put the family in pain while relieving my mother's pain.
At times it was as if she was out of her mind and it nearly drove us out of ours. She no longer trusted the people that loved her and many times would forget what she was saying in the middle of a sentence. The family told her many things over and over again and she wouldn't do them and always forgot what we told her. To me Morphine kills a person before they die. It kills their ability to convey the essence of who they truly are. There are alternatives for pain relief drugs but I don't know how much better they are since we only dealt with Morphine.
It amazes me how Patrick Swayze filmed a television series with Pancreatic Cancer refusing to take pain medications so he could concentrate on and accomplish his work. I remember hearing him speak about preparing hours in advance of his shoots to be mentally and physically prepared to accomplish every task in pain. I think drugs such as Morphine make a person die faster because it arrests their mind. In the movie the Matrix if you've ever seen it, Neo is doing the jump program with Morpheus and falls. When he comes out of it he is bleeding and makes a statement to the fact that he thought it wasn't real and Morpheus tells him that the mind makes it real and that the body cannot live without the mind. If you are mentally incapacitated, how can you make a conscious decision to fight for your life?
A glimmer of hope came to us while dealing with the madness of the Morphine which is an alternative pain treatment that Cancer patients can receive that deals with injecting alcohol around certain nerves to block the feelings of pain. My mother had this procedure done but said that it didn't work. To this day I don't know if the treatment really didn't work or if by the time she had it she was
already addicted to the Morphine and the pain she felt were the pangs of withdraw.
Unfortunately Morphine was only one wave in the ocean of drugs we had to deal with. There were digestive enzymes that had to be taken prior to eating, beta blockers, heart medication, anxiety medication, insulin for the diabetes caused by the shut down of the pancreas, medication for indigestion, vitamins, blood thinners for blood clots and so many medications we had to make an Excel spreadsheet just to keep track of them.
One of the effects of the disease that had to be dealt with was extreme swelling of the abdomen and feet to the point where diuretics were prescribed, fluid draw procedures had to be performed by using a needle to draw the fluid from the abdomen and as for the feet; only house shoes could be worn. I found out that the swelling was caused by the Cancer mainly due to the body's reaction to the tumor and to the lack of protein in the blood disabling the bloods ability to hold fluid.
The things that a person goes through with Cancer are almost endless. Every part of the body is affected; especially the mind, the will, and the emotions. Based upon the experience I encountered with my mother a couple of other crises we had to press through was the C Diph infection causing chronic diarrhea causing contact isolation that is almost like quarantine to be implemented. My mother could barely eat and we had to put on hospital gowns and gloves to be in the room with her or even come in contact with her.
An episode we faced with internal bleeding caused by the rupturing of blood vessels was very traumatic and hospitalized my mother after she passed out from weakness with her eyes rolling back in her head due to the extreme blood loss. Blood was in her bowels and blood transfusions had to be issued in order to get her blood count back up to normal which is usually 14 and hers was almost half that. Had we not sought medical attention for her at that time she could have died. So that you can recognize this, the symptoms are usually extreme weakness and black loose bowels. I experienced the same thing when I was four years old and diagnosed with acute hemorrhagic pancreatitis.
We tried chemotherapy which is extremely hard on the body, killing the good cells along with the bad. Chemotherapy is like infusing your body with a poison in order to get rid of another poison. For some people it works but sadly to say in the cases of Pancreatic Cancer it is rarely effective. I am not a doctor and therefore give no medical recommendations as to how to treat Cancer of the Pancreas but in my own personal opinion and experience through observation I would say if possible, find a better way.
There are alternative treatments, natural remedies, and experimental treatments. A Cancer patient can seek studies that are being conducted for the type of Cancer they have and in many cases when they become a part of the study they can receive free or very low cost experimental treatments. One day one of these experimental treatments might be the answer. My mother used an experimental chemotherapy that was available but it was too hard on her heart. One of her smaller tumors did disappear but that wasn't enough to save her.
Chemotherapy can carry such side effects as nausea, vomiting, and decreased white blood cell counts. Historically, Chemotherapy has not been effective in the treatment of Pancreatic Cancer, but there are more up to date treatments that use an FDA approved agent called gemcitabine which has helped to shrink some tumors for Carcinoma of the pancreas.
At one point we went to see a naturalpathic doctor specializing in alternative Cancer treatments that knew of a treatment that had proved to be effective for Pancreatic Cancer. The name of the treatment is Intravenous – Lipoic Acid/Low-Dose Naltrexone Protocol. There are various articles and information on this treatment for you to research and intelligently consider.
Our problem with the treatment was that one of the drugs prescribed for it that could only be filled at a compound pharmacy blocks the affects of opiates and since my mother was on Morphine for pain a known opiate she plunged into a chronic pain episode that caused her to lose coherency from the pain and go to the emergency room where the only thing they could do to relieve her pain was to give her a drug strong enough to sedate her and completely knock her out. It was a tremendous setback in her treatment. The opiate blocking drug was supposed to be a very low dosage that should not have negatively affected her so if this particular treatment is chosen I would do extensive research and make ample preparations before trying it.
When you are personally dealing with Cancer or know someone close to you that is, you will find out quickly that everyone has a product to sell you that they claim has cured someone from Cancer. Maybe they have and maybe they haven't. Again, I remember watching an interview with Barbara Walters and Patrick Swayze when he said something to the effect of, “If you had a miracle cure for Cancer you would be rich and everyone would know you so just shut up.” We tried several products and ordered everything we thought could make a difference or be a cure. I'm going to share with you two things that you can buy on your own that we didn't get a chance to try because we found out about them too late. I don't know it they work, but its worth a try as anything is when you or someone you love is dying.
You can search YouTube and find videos on the banking soda Cancer treatment and you can search the Internet to find articles that specifically discuss the use of asparagus to treat Cancer. There is so much more I could say about different treatments and drugs but instead of going on and on about this subject I will instead give you a few helpful hints.
Helpful Hint #1: If you are strong enough to do it, aerobic exercise helps Chemotherapy patients by ridding the toxins in their system from Chemotherapy through sweat. I read an article once about a lady with Cancer that felt too sick to do aerobics when her coworkers kept inviting her to class because they didn't know she had Cancer. She started the classes eventually and felt sick at first and then started feeling better. She sweated the toxins out and one year later was teaching the class Cancer Free.
Helpful Hint #2: When a Cancer patient's veins are to the point where it is extremely difficult to draw blood or administer IV medication a Central Line which is a port for IV and medication inserted into the jugular vein by ultrasound can be good. I witnessed the pain of my mother as she was poked multiple times with attempts to draw blood and insert IV's. Save yourself this pain with a Central Line.
Helpful Hint #3: Keep a positive attitude and laugh as often as possible. The Bible says that laughter doeth the heart good like a medicine. Sometimes simple laughter will do more for a Cancer patient than any drug. Laughter heals and it makes a person's time on this earth more enjoyable. Talk about funny memories from the past with family and friends and laugh, laugh, laugh! You deserve it! Mental support is important. Encourage, speak positive things, and most of all be there for the person that you know that has Cancer. Cancer and all the things a person goes through with it are scary. I coached my mom and encouraged her and told her she could make it when she didn't think she could. Encouragement in love can add time to a Cancer patient's life. Ask lots of questions and gain as much knowledge as possible. If a drug or treatment you or a Cancer patient you know is on doesn't seem right; talk to the doctor about it because there is always an alternative.
Entry # 4: Disappointment:
Normally in life there are disappointments. When you already have a disappointing disease, disappointment can be magnified. What do you do when the Chemo doesn't work? How do you react when the miracle cure you found out about doesn't cure? How do you deal with setbacks that surface along the way? What you do is keep going, keep trying, and don't give up. It is important to express disappointment and acknowledge it as long as it doesn't take you captive. Just having the disease is disappointing, not to mention all of the obstacles encountered while dealing with the disease. Disappointment is not only experienced by the Cancer victim but by the family and friends that love that person so much.
I was working on my MBA when my mother was diagnosed with Cancer. Since she was already in Stage 4 of Cancer when she was diagnosed we found out shortly after the diagnosis that the Cancer had spread to her lungs and other areas of her body. I can remember the day I found out about that. I started crying at work and couldn't stop and had to leave the office. I know what it feels like to try and hold tears in and there is nothing you can do to keep them held in your eyes. I know what it is to cry until your stomach jerks in and out and snot comes out of your nose and you feel like throwing up. My mother was my best friend and because of that I am well acquainted with disappointment.
I always wondered how the people with these miracle stories that publish these books about overcoming Cancer did it. Their methods worked for them with no doubt but my mother was in such a bad state she couldn't even do most of the things these books said to do and that was so disappointing. I wished I could speak with these people personally just to ask them…HOW? How did you do it?
One of the greatest challenges faced was that my mother was a Minister and Pastor and she had a lot of people praying for her as she even believed for her own healing. Father Yah (God) is a healer but He doesn't always heal and there is always a question of why for those that are not healed. Dottie Olsteen the wife of the late Pastor John Olsteen of Lakewood Church in Houston, Texas now pastured by Joel Olsteen at one time had terminal Liver Cancer. Dottie gathered together the healing scriptures from the Bible and began to speak them over herself three times a day like a medicine prescription and was totally and completely healed.
Why her and not my mother? I don't know. Maybe Yah (the name for almighty God the Creator in Hebrew) was ready for my mom to come home with Him. All I can tell you is that disappoint can and will come in many forms. The best cure for disappointment is to overcome with an attitude of thankfulness, accepting that you don't know the reason for all things but you do know that there is a reason and a purpose for all things. Stay positive while keeping your mind and spirit open to whatever might happen. Disappointment comes when something other than what you expect or anticipate happens. With Cancer you have to be prepared for the success or failure of anything and everything. Be encouraged; you are stronger than disappointment. Don't let it catch you off guard but be prepared for it. Know that for every disappointment there is a triumph on the other side.
Entry # 5: Diet:
Anyone with Cancer should reconstruct their diet to contain the foods that fight against and can even cure Cancer. Eat and drink substances that are non-acidic, alkaline, and highly concentrated with antioxidants. Research to find Cancer healing foods.
One of the most important things to do is to drink a lot of water. Water is the source of life and the human body is mostly composed of water. There is an author that wrote a book called, “You Aren't Sick You're Just Thirsty” talking about the importance of water and its affects on the body.
Diet is a rough subject with Pancreatic Cancer because you can know all the right things to eat and not be able to consume them. The affects of the disease on the digestive system makes it very hard to eat and drink. The patient may lose their appetite and even if they do have an appetite, once they eat it can make them feel sick. Pancreatic Cancer sabotages the digestive system.
One thing that helped us was some information we found on dill pickles that assists in the digestion of food. In many instances when someone with Pancreatic Cancer or other digestive problems eats a dill pickle with each meal it helps to counteract the digestive problems so they can eat in comfort and keep the food down for nutrition to the body.
There are also drugs available to enhance the appetite, but if dill pickles can also be eaten with every meal that should help greatly as well. Since Pancreatic Cancer patients have difficulties in eating and tend to lose a lot of weight, dietary supplements such as protein shakes are suggested which are ingested easier with the use of a straw. Peanut butter can be added to the shakes to increase the calorie content and nutritional value of the shake. Another suggestion is to eat very small meals all throughout the day. The Cancer patient may not feel like eating but in order to live they must FORCE themselves to eat. Lack of food and liquid can kill quicker.
Vitamin D fights Cancer and freshly juiced vegetable juices containing the juice from green leafy vegetables can be extremely helpful especially when drank right after juicing when vitamin content and living substance is at a high level. The external diet is also important which consists of Epson salt baths that help to heal and release toxins from the body.
We all know the saying, “You are what you eat.” Eat what is alive and it will help you stay alive. The first 3 letters of the word diet is the word die. Don't let what you are eating kill you. Since Cancer patients many times have to give up foods they love in order to live, it is great if the family can conform to their diet in support of their dietary efforts. Some foods make Cancer grow like simple sugars. Cut the sugar out of your diet and use a natural alternative like Stevia to sweeten foods. Stevia is a naturally sweet leaf that is available in powder and liquid form to sweeten foods and use in recipes. I am a big Bible reader so I love that Stevia is a leaf because the Bible says that the leaves shall be used for the healing of the nations. Other well-known artificial sweeteners can actually be poisonous to the body so be careful with them and avoid them if possible.
Entry #6: Death:
Even when you know someone is going to die, nothing really prepares you for the affects, effects, and real life reactions to that death. Everyone's experience is different, and I will share my personal experience with you hoping it will help you in some way. I can remember my mom looking at me one night and saying to me, “I'm dying!” I didn't know what to say back because even though I knew she had Cancer and death seemed inevitable, I refused to accept the fact the she was actually going to die.
We took her to the hospital on a Thursday and the very next day they wanted to send her to hospice. Hospice is a great and awful place all at the same time. Great due to the care and support and painless exit for the patient from this world they provide. Awful because you know that it is the last place you will be with the one you love. Hospice facilities are very comfortable and they give you a chance to say goodbye even if you don't want to. No one does. Please know that you aren't the only one going through this; neither are you the only one that has ever gone through this.
Counselors are provided, as well as, chaplains for spiritual support and prayer. You will receive a booklet explaining the death process which helps you know when death is near. During this process, give the Cancer patient a lot of love, comfort and support, and make sure you yourself get ample food and rest. Speak to your loved one while they are responsive and even after they are in a drug induced comma because they can still hear you. Be sure not to be selfish and release them to pass on so they won't linger on in suffering. That is all I will say about the hospice experience as you will learn more as you are actually in it. This is the time to meet with the funeral home and make preparations for the funeral and burial. You won't want to do this, but it is necessary and will help smooth out the process. Overall, hospice is a place to say your final goodbyes.
Entry # 7: Debt:
My dad only had enough life insurance to cover my mom's funeral, and this is not recommended. The moment a Cancer diagnosis is in place get as much checkup free insurance as you can get. For some reason the bill collectors don't understand the word death, and you can be stuck with bills that increase your sorrow after your loved one is gone. You will need a living will for your patient to be able to make medical decisions for them and you also need a power of attorney to deal with their accounts way before a death experience is upon you. You may have to handle business matters that they can't deal with while they are still alive and after they have passed on.Also make sure a will is in place so you don't have to deal with probate. Some accounts are easily closed after death simply by submitting a copy of the death certificate to the creditor and it is important to see if insurance is in place to pay off accounts upon death such as mortgages.
I have shared my heart, soul, and intimate personal experience with you in this article to the best of my ability. It should not take a crisis such as Cancer for us to become mortgage and debt free but if something such as Cancer arises I know that being mortgage and debt free can be one less worry. Work to reduce or delete your debts as much as possible. My dad would have more freedom and options today had his house been paid off when my mother passed. In addition to medical bills there were some prescriptions that cost $800 for a 10-day supply after our prescription benefits ran out. Death and sickness know nothing of the extra financial burdens that can increase and extend sorrow.
You will feel the pain of your loss for awhile and it will be absolutely unbelievable for a very long time, but you will get through it. Remember the good times, look at pictures of life, and hear the voice of your loved one live on in your mind and spirit forever. I wish you abundant peace. If you would like to find out how to get a copy of the book I've written in hopes of helping people deal with the loss of a loved one, please call or email me.