Caregivers - Riding the roller coaster with the patients

Let's face it, cancer is a family affair. While only one in the family may be afflicted, most of the immediate family becomes intimately involved. And within that group, there is usually a specific person designated as the “caregiver,” the one who watches and monitors all the daily activities of the patient.

These responsibilities include the administration of medications, the changing of wound dressings and visiting the the doctors with the patient, to name only a few.

Often, the caregiver has a better grasp of what the patient needs than the patient. This makes sense because the patient may be on several medications, is faced with fatigue and simply has a lot on his or her mind. Further, in my case, I was really "out of it" for several days after my initial surgery, so Vida, my caregiver, had to stay informed on what was going on. She also made the necessary preparations prior to my release for my homecoming which involved making sure the proper equipment was in place, like the oxygen tanks, the suction machine and the nebulizer.

I was also unable to drive for several months after the surgery and had to go to the hospital for 7 ½ weeks of radiation and chemotherapy treatments. In addition to these, periodic doctor and therapist appointments were constantly required.

From the day I went home in March, Vida has kept daily records of every medication I take throughout the day, the time they were taken and the dosage. Often, this was needed when we went back to the doctor for a medication review. We easily knew what was taken and how many of each. The doctor was then able to determine what changes may have been required. The records were also used once when we were told to call for an ambulance due to a reaction I was having. The paramedics needed to know precisely what I had been taking.

We had a visiting nurse when I got home in March as well. She would take my vitals, check on the wounds from surgery and report back to the doctors on anything unusual. Insurance cut her off after a few visits, so she spent time showing Vida how to change the dressings and went over the supplies we would have everything we needed.

Caregivers also give emotional support. The title of this blog is the cancer roller coaster and the caregiver follows the same ups and downs as the patient. But since they were not on medications, recovering from surgery or undergoing serious treatments, the caregiver tries to stabilize emotions of the patient and when he or she is feeling down, they will try to build me back up. Likewise, they jump at the opportunity to celebrate the triumphs as well.

A positive attitude is one of the key components for a successful recovery, so even if Vida was down, she would have to do her best explain all the good that is happening despite any brief dips. And she demonstrated her care for me by doing just that.

Cancer is a difficult disease to deal with. As much as the patient may try not to think in that direction, the possibility of death comes into sight, even if the cancer was not considered terminal. The caregiver knows this, and Vida knew this. Every time the roller coaster takes a dip down, a certain fear factor sets in. The patient and the caregiver need to come to terms with this and support one another. There isn't any choice but to make the most of any situation that comes along. That's simply what we have to do.

ChooseHope.com offers a framed caregivers poem that I got for Vida as a gift. The poem reads:

Thank you for standing by me and lending an ear.
For helping me out by just being near.

Thank you for cheering me on or saying a prayer.
For holding me up and showing you care.

Thank you for making me laugh and giving me hope.
For showing support and helping me cope.

Thank you for all that you've done and all that you'll do.
I am so very fortunate to have someone like you!

Written by: Linda Nielsen- Choose Hope, Inc. Copyright 2000

What does cancer mean to you?

I asked this question to friends on facebook to see what the response would be. For me, cancer was a scary word going back quite a long way. While I did not have a thorough understanding of the disease, I did know that many people have had cancer, died of cancer or have yet to be diagnosed with cancer.

It was like a monster hiding behind the trees in a forest waiting to jump out at innocent people of all ages. It tries as hard as it can to strangle the energy, the hope, and the life from these people.
Cancer is still far too successful to be taken lightly.


This is what others had to say:

Kitty: "It has no rhyme or reason and strikes without warning. It doesn't discriminate between social or economic classes regardless of faith or the lack of it. It brings everyone into the shadow of the valley of death. It builds incredible courage from living with a life-threatening illness. It teaches us to appreciate and live in the present moment, because there is no certainty or reality other than now."

Wendy: "scared, worried then thankful for another day, live life to the fullest...I'm 8 years a cancer survivor...."

Gwen: "Fight."

Thomas: "Loss and sadness unfortunately."

Diana: "We call it the Devils Disease!"

Ronnie: "To be absent from the body, is to be home with the Lord." Then he added: "Cancer scares me because it is a slow, horrible way to die. Death does not scare me. Living with the pain, the uncertainty and being diseased for a prolonged period does frighten me."

Debra: "Sadness ...depression. ..I am breast cancer survivor so I know about the worries ...."

Jessie: "There is a cure. Cancer is a demon working with death. But He is defeated. Because Jesus won the victory. So all you need to do is cast it from your life. If you believe Jesus is your Lord and savior and believe HE has all power over the devil then you are qualified to do it."

Ann: "Scary then hope"

Martha: "Scary stuff, and I know many many people who have won the battle. I feel you and my brother Richard will be among them."

Dlynn: It is a dark cloud that follows me ...but I defeated it once and if it comes again I will stay faithful that I can beat it again if its in the plans. Amen." 
Then she added: "    My 5 yr post bone marrow transplant scans came back clean this month! So lymphoma is most likely a thing of the past....but there are possible consequences from treatment I have to be aware of. We all have to live each day fully no matter our health history. All our days are numbered. Even for those with perfect health."

George: "There is hope"
 

     
 

How well does the medical staff communicate your condition

I mentioned in an earlier post that I first noticed the lump in my jaw in November, 2013. I have seen thirteen doctors and therapists since that time:

Family Doctor
Medical Oncologist
Radiation Oncologist
Otolarygologist
   1 - dissection
   1 - reconstruction
Pain Specialist
Proctologist
General Surgeon - Power Port
Ear, Nose, Throat Specialist
Speech and Swallow Therapist
Gastroenterologist
Pulmonary Specialist

Selfie:Waiting in the emergency room

I appreciate and respect the specialty each one has chosen. As with any group of individuals, there were some I liked better than others. But each had their own task to do and some tasks overlapped each other and that I understood.

The problem, however, is that there seemed to be very little communication between the doctors regarding my treatment. Often, doctors would disagree with each other and I was left to decide who to listen to. As a patient under professional medical care, it was awkward to hear one doctor recommend one medication only to have another tell me not to take that and to take another
instead.

We have all heard second opinions matter, but I don't see this as a matter of a second opinion; I see it as differing opinions falling under the same blanket of professionals. In other words, it was not a case of two doctors with the same specialty offering different approaches, it is two doctors with different specialties, assigned to help me within their own specialty, offering opposing viewpoints.

I was also recently told by an "old school" nurse who has been around a long time (her words, not mine!) that doctors may not share all the information you may need. Often, they will wait to see what the patient asks then answers those questions but none other. She suggested that whenever I go to see a doctor, prepare a list beforehand and bring that so those questions can be asked. It's a good idea, too, because I found myself forgetting certain questions only to remember them on the way home.

I have seen a commercial on TV for a cancer-specific healthcare facility with locations in various parts of the country. In the commercial, the group of doctors and specialists assigned to a patient gathered around a conference room table discussing treatment plans. That, to me, sounds like the right way to approach this problem with the best interests of the patient in mind.

And the fact that these doctors and specialists are in different buildings or areas of the city should not matter. Technology has that problem solved. If a 6 year-old boy can talk "face-to-face" with his 85 year-old grandfather from different parts of the country on the computer, certainly a handful of doctors can do the same.

The roller coaster heads downward again

Thanks Amy for this great poster

If you were not able to understand the concept of the roller coaster ride, here is an example.

About three weeks ago, I got the results back from my most recent CT Scan. For the most part it was great news. There was some concern about a lymph node that had grown in size since the last scan. There did not seem to be much concern, so we considered it a good report - an upward swing.

Last week, I had a scheduled appointment with my original surgeon. I was asked to bring a copy of the CT Scan report so he could review it himself. He checked my surgical scars, reviewed the scan and checked inside my mouth where I was still having considerable pain.

It was determined that I needed additional surgery. They wanted to removed the enlarged lymph node, remove two nodules from the original surgery and take a biopsy of the gums and inner lip to see why there is lingering pain.

My surgery is scheduled for October 28. Fortunately, I can go home the same day, but the surgeon said there may be another round of chemotherapy after the surgery is completed.

Thus, the roller coaster. Just when we think we are riding high and headed toward the road to recovery, we are dealt another downward spin. We get used to it, sort of. It is always our hope, of course, to just get better and put it all behind us - never giving up. The disease, however, has a plan of its own.

Prescription Medications

There aren't too many procedures performed at a hospital that don't require at least some kind of medication before, during and/or after the procedure.

With my cancer (malignant neoplasm, floor of mouth), extensive dissection and reconstruction of my mouth was required during the 8 hour procedure. Parts were harvested from my arm and leg to help with the reconstruction. A tracestomy and PEG Tube were implanted, all of my lower teeth were removed, part of my tongue was cut off and replaced with part of my arm and leg and the cancer tumors had to be removed. Mouth pain is something that has always been a 'sore' area for me.

While I was in the hospital, I was on morphine, although I don't know how much or how often. What I do know is that pain was seemingly well-controlled. I also remember, however, that there was a lot I did not remember.

Then, seven days after surgery, I was released and was given two pints of liquid Hyrdrocodone (I had the PEG-Tube and was unable to use my mouth for any purpose).

Throughout the course of the recovery, I was prescribed many drugs. Some were for various, basic maintenance but others were narcotic pain relievers. These included:

• Hydromorphone
• Oxycodone
• Tramadol
• Fentanyl (patch)
• Gabapentin

We had to keep track of all medications taken throughout the day to make sure they were taken and also to make sure I did not take any over the prescribed dosage.

When the medical team was having difficulty determining why pain was still an issue, one suggested that I might have to find a pain level I am comfortable living with. That did not sound too promising.

Sometime I would take over-the-counter pain relievers to supplement what was prescribed, but I had to be careful since all of those come with precautions such as the possibility of liver or stomach damage.

I began to watch closely the efforts of John Morgan and the United for Care, People United for Medical Marijuana, campaign.

According to the United for Care website, there were two reasons why Morgan
supports this measure:

"The two reasons behind his vocal support of the medical marijuana legalization effort in Florida, he says, started when he saw how medical cannabis helped his father, who had been diagnosed with emphysema and esophageal cancer, relive his pain.

The second reason, according to Morgan, stems from the damage he’s seen caused by the high-powered prescription pain medications his clients are often given by a doctor following an injury.

Also, 'as a personal injury attorney,' Morgan said, 'I’ve seen people in pain who end up on oxycodone. And 16,000 people die from that every year. It’s highly addictive.'”

Honestly, I cannot say if prescribed medical marijuana would have been beneficial to me in controlling pain. I was never given the chance. But I do see the support comes from some very prominent and influential people in Florida.

I will continue to watch this campaign very closely. The State of Florida has the "Constitutional Amendment X, Section 29 Use of Marijuana for Certain Medical Conditions" on the November 4 ballot.

Again, I am not sure if medical marijuana would have helped me nor do I know if my condition would have qualified me for a medical marijuana prescription, but based on the difficulty the doctors are having controlling my pain, I remain open to any alternatives.

Jake lost his battle against cancer

Jake

The journey we take with cancer can sometimes take a fatal turn on us. I had a cancer battle buddy named Jake. He had bone and brain cancer. I admired his courage through all of the tough times and I highly respect his wife, for being there following the course with him. She was at every turn, supporting him, encouraging him, praying with him.

Jake passed away one Sunday morning in September. He was younger than me and we both had different types of cancer. We rode a teeter totter together, it appeared. With cancer, there are highs and lows in physical, emotional and spiritual conditions. And it seemed like when he was on the high side of the teeter totter I was on the low side. We alternated for several months, up and down, back and forth.

Two weeks before he passed, Jake was at a low and some thought he could not tolerate a new treatment plan they proposed that could possibly pull him out of it. But he was stubborn, actually, it was more like he was determined, and he wanted to make the new plan work. Jake fought hard for his right to live. He exercised, he went through rigorous physical therapy and he tried to surpass that which was expected of him. But it was not enough.

The cancer was too powerful, it consumed his body, but not his soul. The doctors felt that hospice care would be best for him and his wife. So they checked into the hospice care facility and waited for Jesus to take him home. Again, he was not going to go without a fight.

He was constantly surrounded by family, friends, co-workers, neighbors, fellow church members. He waited and we waited. Perhaps he wanted to make sure that his house was in order first. Not his heavenly house, but the house he would leave behind to his wife. It seems he wanted to make sure she was cared for in all the right ways.

On Sunday morning, he passed into the arms of Jesus. He will be missed but we will never forget him and how he walked with me in my own journey with cancer. He did what he could for himself, but he always asked his wife how I was doing and where I was with my treatment.

He cared for us. And we cared for him. One day last week in hospice, I took his hand and said "Thank you for walking with me. I am still walking with you." He squeezed my hand in acknowledgment with the only gentle force he was capable of.

He sang in the church choir, and a fellow choir member noted that at about the time of his passing,"we were just singing ‘my chains are gone, I’ve been set free.’”

Rest easy, my friend. You are in good hands and so is your loving wife.

If in doubt, check it out!

Cancer is a brutal disease. It does not care what plans you have for the future or how many other people will be affected by your cancer. It doesn't care what you may lose in the process of trying to stay alive. Cancer does what it wants to, when it wants to and its goal is to conquer your body; it wants to kill you.

One of our greatest defenses against cancer is early detection. The sooner we realize something might be wrong and needs to be checked out, the better. Waiting allows the cancer to multiply and spread. Like the game of Risk, cancer ruthlessly takes on any part of your body as quickly as possible. It's smart enough to know that planting its seed in as many areas of the body it can will help the cancer win the battle. Clearly, it wants you to lose.

Some of us, myself included, will think something is not right with our bodies and hold off getting it checked for fear it may be news we do not want to hear. But we wait knowing deep down that not checking it out only makes things worse.  We also know that not going to the doctor will not change the condition we are frightened of.

I had a lump in my jaw and was concerned about it, so I asked my family doctor to take a look at it when I was already there for a high blood pressure medicine review. The doctor glanced at it and suggested that we will keep an eye on it.

So here was a case where I wanted to find out what the lump was, but the doctor was not concerned. This is where I should have insisted the doctor take a closer look and at least tell me what the lump was. I didn't want to wait, the doctor did.

We need to clearly express our concerns to the doctors and if they are not responsive, ask them to have another doctor come in and look at it. If there is none, seek a second opinion. It is our body and our life at risk. I have no medical knowledge, but I believe it would be accurate to say that the waiting this doctor caused allowed the cancer to spread. It was 3 months later that the cancer was finally discovered.

You owe it to yourself and to your families:

If in doubt, check it out! Early detection saves lives...