Dealing with Breast Cancer as seen by
A surviving family member
And dealing with physicians and hospitals that
May or may not be competent
I am not a professional writer, but just hope to get the message across to those who care to read.
This narrative short story is dedicated to my loving wife of 22 years who died after a long battle with breast cancer. It is a story of her courage, the desire to live a life as normal as possible, the treatment, problems associated with it, good medical care and horrible hospital conditions. Hopefully, this will open your eyes to what is available for those suffering from different types of cancer, especially those with metastatic breast cancer.
I also would like to commend Dr. David Caldwell of Danville, VA. For his total dedication to his profession as an Oncologist.
We have many good competent physicians out there, but there are also quite a few that do not care about the patient and have questionable abilities.
Special thanks to my mother Barbara Jarman for being with Cathy every step of the way and for all her support and love.
Thanks to Eli, Delaney, and Corey for being the grandchildren she always wanted. You were the loves of her life.
Thanks to Johnny Edwards. Cathy could never ask for a more supportive brother and friend.
Thanks to Walmart. As Cathy’s employer the support was absolutely amazing. That goes for the management as well as the entire staff.
In the summer of 1998, my wife decided to have her first Mammogram. She did not have any symptoms, nor did she have any family history of cancer. She met with resistance at the Danville Imaging Center and was told that since she was only 35 years old there was no need, to call back when she turned 40. This is apparently common practice in the medical field. My wife is not one to push issues or be confrontational so she said OK and dropped it. The following year she decided that since the insurance pays for it anyway, time to get checked even though she had no family history of breast cancer. She finally got a Mammogram in August 1999. On Wednesday she had the test, on Thursday they called saying there was an abnormality and she needs to come in on Friday for another test. Friday morning she does as requested, but we were headed out of the country for the next 5 days, so myself and our daughter Candie had to help soothe her for the entire trip because as you would expect. Waiting for results when you know they found something out of the ordinary can make a person very nervous.
Upon our return, she immediately calls the imaging center and is told to contact her OB/GYN doctor for the results. This is when we find that there are physicians who do not see the urgency of these problems. It took two weeks for this doctor to refer her to an Oncologist. That only happened after I called and basically gave them hell for dragging their feet on this matter. I do not know if this was an issue of his staff or the doctor himself, but for those of you in Danville you need to know that was Dr. Beavers office.
Now we go to Danville Oncology and talk to Dr. David Caldwell. For the first time we feel a little comfort. Without ever making us feel rushed, he explains in detail the cancer, the stage Cathy is in and the difference in the stages. He answered every question we had totally to our satisfaction. He explained the treatments, the expected results, the risks, and assured us we would get the attention needed. He also invited us to get a second opinion and even offered the names of some good oncologists. Cathy felt very comfortable with this doctor and decided to trust him completely. This was one of the few good things that happened throughout this ordeal. It turns out she had a large lump nearly the size of a fist and we needed to act quickly. The next step is to inform our youngest daughter (Candie) who is in high school. This was hard for us, but must be done. When we told her, she cried and only knew cancer was deadly and her emotional response was “I don’t want you to die.“ It was important that we explain to her that cancer does not always mean death and we are going to fight this thing with every avenue available to us. She became her mothers biggest supporter from day one.
Dr. Caldwell refers her to Dr. Percival, a local general surgeon. The next step was to have small section of our breast removed to test (biopsy). We now need to find out if the cancer is malignant or not. This doctor came highly recommended by Dr. Caldwell.
Cathy went to the one-day surgery section at Danville Regional Medical Center (DRMC) for this biopsy. It only took one day to find out that this cancer is malignant. The surgeon recommended a radical Mastectomy and the Oncologist concurred so we went forward with this procedure to remove her breast. This can be very difficult for a woman. Cathy, like most women, feel like they are less of a woman when a breast is removed. This makes it all the more important to have the support of their family. She also had a port installed in her chest. This is a tube directly into her bloodstream to allow chemo treatments and blood tests do be conducted easily with very little discomfort to a patient. The Surgery went very well and Candie stayed with her every moment in the hospital. For those about to go through this procedure, expect drainage of fluids, but with good doctors and by following instructions, the healing process goes fairly quick. Unfortunately, when a breast is removed, so are the muscles crossing the chest. This will cause a little discomfort and some weakness in the arm on the same side as the surgery was done. This does not complete cancer treatments by any means, it is just the beginning. From this point on, family/spousal support becomes very meaningful and is needed to keep up the spirits.
For the next 6 months, Cathy must have Chemotherapy every other week. She was able to do this in the morning and still work her job. All the things we hear about Chemo are not applied to everyone the same. After her second treatment she started losing her hair a little at a time. When she washed or combed her hair it would come out. When she awoke in the morning, she would have to pick hair up off her pillow. So, the dreaded hair loss has happened. A trip to the wig shop and luckily we find a wig that looks nearly the same as her natural hair and now for the first real emotional part of this ordeal. Candie and I shaved her head. She cried as she was one who always loved fixing up her hair and doing things with it. The surprising part of all this, she was actually beautiful when bald. She put on her wig, and there it would stay for the entire treatment. She would never allow anyone to see her without this wig. She was afraid people would know she was going through this treatment program and be treated differently and wanted so much to be just like everyone else. Of course, when she was home alone, or with our daughter and I, the wig was off. We would rub her head and toy with her a little to cheer her up and that seemed to work. I even offered to shave my head to be bald with her, but she would not hear of it.
Chemotherapy can do some strange things to your body and mind. The side effects include, but not limited to hair loss, fatigue, and sleeplessness. To combat these side affects, the chemotherapy drugs which is a combination of various drugs has Steroids added to it. Now the Steroids add another side affect or two. It can cause mental issues such as depression and mood swings. Now more drugs to combat this. She would have a treatment, then not be able to sleep that night or the next day. By the second night after treatment she was so tired she could not move and would have a nice long sleep. About 3 days after treatment, the effects are wearing off and she is feeling better, only to start all over again at the next treatment. Observing this is frightful. It is hard to watch your spouse going through these mood swings and not be able to do anything but offer her comfort. I find it important to treat her with the love she deserves, but she feels like she is being crowded by family when we do this. It is not a win-win situation.
During the treatment we took a trip to Disneyworld in an effort to cheer her up. She enjoyed this trip as much as possible, but was tired for much of it. She would get up and eat breakfast then nap until 1 or 2PM before she had the energy to get out and enjoy the sites. By 9PM she was too tired to do anything else and was ready to sleep. The trip was still a good escape from all the treatments and workdays.
After the 6 months of Chemotherapy is complete, step two is radiation treatment. A weekly trip to a radiologist to shoot short bursts of radiation from her neck downward will leave a permanent scar. For those that know this scar, you can spot anyone who has had this treatment. She went through this radiation therapy for a couple of months and you would think that is it. The effects of the Chemo are finally gone, the mood swings and depression has ended. The hair is growing back. It seems like things are getting better. Cathy now has her energy levels back to normal. Everything seems to be back to normal now, except for the scarring, the prostheses device she wears where there used to be a breast, and the very short hair. The bad thing about cancer is it does not want to let you go. Now that she is classified as a breast cancer survivor, she will be forever under a doctors care. The next step is a drug called Tamoxifen. This is given to patients upon completion of the treatment to help prevent the recurrence of the disease. She will take this drug for the next five years. It has side affects that come on slow, but they include loss of sex drive and premature menopause. For five long years this medication is taken daily and frequent follow-up exams at the oncology office and annual mammograms. This is the period of relief though because it looks as though we have beat this deadly disease. She completed her five years and still no sign of any cancer and we all feel a sense of relief. Cathy now has her full energy back and has developed a new attitude towards life. She has become deeply religious and has accepted God as the guiding hand.
During all this our daughter has come of age and married and has two children. I also have two older children (her step-son & step-daughter) that have showed their support throughout all of this. We spend as much time as possible with these precious children. Life seems to be getting better, we have developed a closeness that only those who have been through this could ever understand. She is working and enjoying her job. Time to take a vacation and just enjoy some of the sights.
While vacationing with her mother-in-law in September 2006 Cathy started having stomach pains and called me to set up an appointment with her doctor. Upon her return some tests were done with suspicious results. This was followed up with an MRI. Her doctor pushed this test through very quickly and unfortunately the results are not what we had hoped to hear. The diagnosis is Metastatic Breast cancer. For those who do not understand this, the breast cancer is no longer confined to the breast area. She has cancer attacking her liver and an area in her bones. This is very upsetting since we know that this has become extremely serious. The plan is to do Chemotherapy and hope the cancer shrinks so it can be surgically re moved.
So, another round of Chemo. We started immediately. This was combined with some expensive and powerful medications to work on this new cancer. Thank you for medical insurance. This medication would cost nearly $1800 every three weeks without it. She takes 3 500mg pills every morning and repeats at night. The Chemo is weekly. Side effects are terrible. Her hair thinned this time, but she did not lose it. The pills however, create a lot of problems. Dry skin, fingers tingling, feet dry and skin cracking. Constant attention has to be given to these problems to prevent pain and infection. Every few months a new MRI is done. The cancer has shown no growth, but no shrinkage either. A PET scan shows nothing new. She now has to deal with sleepless nights, followed by very long naps, depression, pain in her hands and feet, and no energy to enjoy life. It is such a terrible thing to stand by and not be able to do anything to help. The treatments have taken there toll on her. As the time has gone by, she has become weak. She became a little withdrawn and spends a lot of time with her bible now. She does not talk about her problems and supports her family the best way she can. Candie has her third child. We now have seven grandchildren and this is the one thing the gives her strength. Cathy lives for her grandchildren. Our son-in-law returns from Afghanistan and moves to New York with our precious daughter and that is a devastating blow to Cathy. I truly believe that Cathy and Candie were joined at the hip and this separation was difficult.
By the summer of 2007 she is still working, but is tired all the time. She has a four day work week and spends most of her three days off in bed, or sitting around the house in her night clothes. No energy to get dressed and do the things she so enjoys. On a few occasions, the effects are so severe that her Chemotherapy is skipped for a week to allow her body to recover. It does not recover much. After nearly a year of Chemo, the cancer still shows no change. She has been getting frequent headaches, and basically aching all over. Her neck bothers her. She is now being pumped with steroids to fight the treatment effects.
It is now August 2007 and her energy has been completely exhausted from the treatments and we are looking at alternatives. In September she drives up to New York to visit Candie and the three grandchildren. Although she was tired all the time, she found the energy to do things with these babies. Nothing could ever stop that. Because she was tiring easily, having headaches and other problems she started talking more with her doctor in an effort to find out what is going on. In early October an MRI reveals a small tumor in her brain In November while at work, she suddenly got double-vision and had to be driven home. This is a scary symptom when you have so many other problems. The following morning she saw Dr. Caldwell and he suspects the cancer has spread into her brain stem area. She would never work again. This is when we found out that medical care in a small town is inadequate.
The local hospital was purchased by a for-profit corporation named Lifepoint. They have cut services, had their accreditation revoked, and laid off many people leaving us without a reputable hospital. Because of this, some doctors have left the area and good doctors can not be recruited, after all a doctors reputation is only as good as the hospital he is affiliated with.
Dr. Caldwell referred Cathy to a Neurologist. This physician, Dr. Hurtado should never have been involved. Even with the severity of this, it took two weeks to get her in to see the doctor. In the interim, she has gone on disability and new symptoms are showing up daily. She is so weak, she needs help to walk. This doctor told her to get a walker and scheduled her for physical therapy without trying to diagnose the problem. Please, remember that you can always get a second opinion and if you do not feel comfortable with your doctor, get another one. On top of this there is a serious language barrier with this doctor. Now we have serious cause for worry. Another month passes and we still do not know for sure what is going on. We found that this brain tumor is not causing her symptoms, and that is scary. We are worried and constantly researching this and trying to get something done. Thanksgiving has come and this determined lady makes a great holiday feast. She labored for hours under the pain and stress to make sure we all would have a great Thanksgiving meal. This would be the last time she ever cooked a meal. She has been approved by her insurance for disability. This we hope is only temporary, but our hopes are dashed very quickly.
By December she has become so weak, that we have to help her stand and dress herself. She has fallen several times when she can’t hold herself up. Cathy is the one who does not complain to us ever. She is trying to deal with this and not talking about it. She is so tired, that it has become an effort just to talk for a moment. She now has to rely on family for even the most simple of tasks.
Finally, she calls our daughter in New York and told her she better come down here now. I do not know what she was thinking, but she was very adamant about her coming home. She called two other family members to tell them she probably would not be coming to visit them anymore, but she never indicated this to me. She never wanted to be a bother, but this was a scary moment for me to see this behavior. She still won’t complain, but she feels something is not right, but won’t say it.
That night she needed help standing up when she fell on the floor. She did not have enough strength to pull herself up. I had to help her to the bathroom and back to bed. This is the weakest I have seen her and we are all now very worried. She has deteriorated more every day. She was very restless, rocking in her sleep, talking in her sleep, and acting very odd. I woke her and she said she was OK, and went back to sleep quietly. I slept in a recliner next to the bed, her foot constantly rocks now and I can’t sleep due to the constant movement.
In the morning I was unable to wake her. She had such a rough night that I assumed she was just sleeping hard as she had done often of late. I went to work but called the house shortly afterwards to talk to Cathy’s best friend (my mother). She lifted her eyelid and she was not responding so she immediately called 9-1-1. She was still unconscious when she arrived at the local hospital. The emergency room worked hard to get her to respond and she eventually stabilized, although we still did not have a good diagnosis of the problem.
At 2PM an MRI was done and she was moved to the 5th floor of the hospital. She did not awake until around 7:30PM and was confused, did not understand why she was in the hospital and was very uncomfortable. She went back to sleep. At 8PM, Dr. Caldwell was in the hospital trying to get results of the MRI and had to apologize to us because there was no Radiologist available to read the MRI and he is not qualified to read it. This is when we started to realize this hospital was not the place to be. I did call another physician at home. A local Neurosurgeon (Dr. Joel Singer) logged in to the hospital system and read the MRI and noted that it appeared there was some cancer activity in the brain stem area. This information is of course passed on to Dr. Caldwell. Unfortunately, because Dr. Singer is not her physician, this was not noted on her chart. Finally, the next morning around 8AM, Dr. Lippert, the radiologist looked at her MRI and oh my god, he found nothing. Nothing. Now, confusion on our part has set in. After giving the doctors a rather rough time, they got a second radiologist to look at the MRI and he also saw nothing. This second Radiologist was identified by Dr. Owusu-Yaw as Dr. Henry Huson II. On the second day in the hospital she awoke again and asked where are we. She did not remember being in the hospital, no recollection of the previous day, and did not know what was going on. Candie and our son Mike JR. have arrived. Cathy’s brother Johnny has just got to town. Unfortunately, this is when things gets worse. Dr. Caldwell had to go out of town and we realized that if we want adequate medical care, we must leave Danville Regional Medical Center as quickly as possible. I wanted her moved to Duke University hospital because of their reputation. The doctor on duty would not do the transfer because she was not his patient. After talking with hospital administration I got nowhere. One of the doctors on duty in the hospital was Dr. Henderson; a pulmonary doctor. He absolutely refused to work on a transfer because he was not her physician. This in my opinion is putting the patient’s needs last. I do not understand how a doctor can be like that. The patient is suffering, not getting proper care, and being made miserable by a non-caring staff and this doctor allows this to continue. Now we have physicians who do not do what is necessary for a patient for reasons that make no sense.
One Neurologist wanted to do Lumbar Puncture (LP) but when I asked what was involved and what are the risks, he walked off on me (Dr. Owusu-Yaw). His partner, Dr. Hurtado wouldn’t explain either. We decided against this test because of the lack of communication with the Neurologists.
Shortage of nurses mean one or two visits by a nurse on the 12 hour night shift they work. The clerk at the counter does not want to do anything responsible. When an emergency happened, we were unable to get a nurse to come for 45 minutes. While unconscious she had a bowel movement and we were unable to get help after numerous requests. After fighting with them for over an hour, I went out to demand an administrator and found a new shift had come on and they had no idea of the problem. All requests for assistance went unheeded by the staff. To make matters worse, it seems like the doctors here do not communicate with each other.
Finally, after 4 days her oncologists partner Dr. Brotherton came in and we got him to request the hospital transfer. Cathy was awake, but had some congestion so he ordered an X-ray. Due to blood pressure spikes into very dangerous levels, the transfer did not happen for two days. During these two days, no diagnosis is made and the XRAY never happened. She started aspirating food and water, so Dr. Brotherton said nothing oral is to be given and this was noted on her chart. Oh No, here comes Dr. Hurtado again. He wanted to give her pills and I had to tell him about the no-oral order. He checked the chart, then sent a nurse in with pills anyway. I am sure you can imagine the awe and disgust we have at this point.
Finally, after 6 days of discomfort and no diagnosis she is transferred to Duke University. It took only a few hours to have an MRI, XRAY, blood tests, and a urinalysis done and get a firm diagnosis. It is a worse case scenario. Dr. Singer was accurate in his findings and the two radiologists in Danville who are trained to read these MRI’s could not see the cancer lurking in her brain stem area. The failure of DRMC to do the XRAY meant she had pneumonia that was not diagnosed. They also explained the LP procedure and we decided to have this done. It is the removal of spinal fluid to test for infection, cancer cells, and other issues. It has a very small amount of risk involved, but the risk factors are worse for diabetics and those with other ailments that don’t exist here. Had this been explained in Danville, the procedure would have been done, and now we know it should have.
The Oncologist, Neurosurgeon, and radiologist at Duke discussed this case together and decided we need to move quickly. Cancer has spread throughout her spinal column and is affecting the lining of her brain. The options available are radiation and chemotherapy, but this chemo is very different. Normal chemotherapy goes through the bloodstream and has no impact on the spinal system. In order to do chemo into the spine, it will require surgery through the top of the brain and a port to be installed at the top of the brain stem. The physicians at Duke work together and are very professional from the start and this gives us a lot of confidence in their abilities. We agree to have the surgery and it is scheduled for Friday afternoon. Cathy was awake long enough for the doctors to get her statement if her heart stops. Cathy said try to revive her, but do not keep her alive on a machine. This is hard to take, but Cathy seems to have a strong mind even though her body is failing her. Cathy falls asleep before the Oncologist and Neurosurgeon explain that even with this surgery, her chances of survival are minimal. They said it was less than a 5% chance she would make it. This was the most emotional time we have had since the beginning. These physicians who want nothing more than to help are stating that they have little hope. Being told that your wife or another family member is dying is hard to take. Friday morning about 8AM I talked to my wife, Cathy and she was very weak. I explained the surgery and let her know this was her only chance, but I did not tell her that her chances were slim. I told her I loved her. By this time, her brothers, our children, and other family members have gathered to offer their support.
That was the last time we spoke. The surgery never happened, her brain shut down around noon. Candie and I held her hands until her heart stopped. She was gone by 1:30PM.
She died on December 14, 2007 at 44 years of age. Such a young beautiful person she was. She was buried in Danville on Monday, the 17th of December, 2007.
I would like to summarize this whole process in hopes that everyone who has to go through this will have an idea of what is involved, and where to go for help and advice.
1. Do not let anyone prevent you from getting a mammogram because of your age no matter what your family history is.
2. Do not be afraid to get a second opinion. If you do not feel comfortable with your doctor, the local hospital, or the diagnostic offices, go elsewhere.
3. Medical insurance is important. According to the National Cancer Society, 60% of those that have cancer without insurance are more likely to die within 5 years. The high cost of medications, chemotherapy, and the tests involved will be impossible to get without money. Yes, they are medical professionals, but they are there to make a living too.
4. The National Cancer Society is a great source of information (http://www.righthealth.com). Your local cancer society office is sometimes able to help with small financial issues related to treatments but remember that they have limited resources.
5. Don’t be afraid to complain to the hospital administration about care issues. In Virginia you can also complain to the Department of Licensure and Certification (http://www.vdh.virginia.gov/OLC/Complaint/index.htm)
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6. Watch for any new symptoms during treatments and immediately bring it to the attention of your physician. Minor symptoms are often a sign of a major problem. When Breast Cancer metastasizes into another area of the body, the symptoms can change. These cancer cells can migrate into any organ/part of the body at any time even during treatments.
7. Do not be afraid to question your attending physician. A good doctor will welcome this and try to help. Communication is very important and mandatory to maintain trust and confidence.
In Danville Virginia the following also applies:
Danville Oncology and Hematology is an outstanding practice. Dr. David Caldwell will make you feel comfortable and explain in detail the entire process without making you feel rushed.
For Neurological issues, Dr. Joel Singer is a leader in the field of Neurosurgery. He practices in Martinsville about 20 miles away. Avoid the local Neurologists. There is a serious language barrier and the level of care is questionable.
Do not put too much trust in the radiologists in this town. We know first-hand that at least two of them do not take the time to get a good read on test results. These two radiologists did not see cancer activity in the brain stem area yet this was on the MRI.
Have no faith in the Danville Regional Medical Center. After complaints went unanswered and I was told not to use their services because I complained I realized that this hospital is more concerned with profits and has no desire to improve conditions for the patients. I was told that the items I complained about were in the past and nothing could be done about them now by the CEO (Jeral Humphreys). Those problems still exist and nothing will be done. The hospital was purchased by Lifepoint Inc and the first thing they did was cut staff and services to save money. This has brought the level of care down to a horrible level.
Research facilities and what they do. There are many facilities that are leaders in the field of cancer research and treatment. Yes, it costs money, but isn’t a life worth it?
If you feel a hospital or doctor is not performing as he should, every state has a department that takes complaints and investigates any legitimate complaint. We need more quality physicians, and we need to drive those incompetent ones out of the medical community.
My fight to remove the CEO OF DRMC is still ongoing. I have worked with state agencies to investigate violations at this hospital and try to improve conditions for future patients. It will not get any better under the current management. I complained to another state agency to get Dr. Hurtado de-certified. Unfortunately, the state agencies are very slow to investigate and respond. In my opinion he is a menace to all those who come to him. It is a slow process when the hospital feels like they have the power to do as they please and endless funds to do it their way. For those that feel like this hospital has done something wrong, DO NOT SIT BACK AND DO NOTHING. We need to band together and fix this problem for the sake of our friends, family, and neighbors.
I hope this short letter will be of help to those dealing with cancer themselves or a close family member or even a good friend. Nobody should have to suffer through this alone and your support and kind words will help them through this ordeal. Research the treatments, check the qualifications of your physicians, do not take no for an answer.
The following blogs on the internet involve issues with the Danville hospital and Lifepoint, Inc.
www.ousthumphreysdrmc.blogspot.com
www.danvilleregional.blogspot.com
Thanks for reading this
Mike Jarman
