Monday, December 22, 2014

Take Charge of Your Body's Well Being

Good Morning Cancer Patients and Caregivers;
When you're diagnosed with cancer your oncologist and your cancer treatment team treat the disease. Their focus is defeating your cancer and curing you. Their intent is to kill the cancer before they kill the cancer patient with the treatment. The issue I see more and more is the issue of the well being of the cancer patient not being of equal importance of focus while going through treatment. Let's face it, the oncologist, surgeon, radiologist, infusion nurse and all the other professionals on your cancer treatment team get paid whether their treatment is successful or it fails. Would their success rate change if they were paid based on the survival and cure rate of the cancer patient? What is lacking in most cancer patient treatment regimes is a combination of treatment to cure the disease coupled with  proactive patient care, so the cancer patient can; endure the grueling toxic abuse treatment creates, successfully get through the treatment rounds and recover for the next round, and enable completion of the treatment protocol.  For example, if during chemo treatment the cancer patient drops 10 percent of their body weight, they are putting their body's well being at risk. They lose body mass and strength, have reduced their nutritional replenishment needed to meet the recovery and nutritional needs of their body as well as reduced the capability of the body to fight infection. As the body becomes weaker, the ability to sustain normal living becomes more challenging. The cycle of self-degradation from cancer treatment continues. Most of the time a feeding tube is inserted into the stomach to ensure the cancer patient is receiving adequate nutrition. This occurs as a result of the lost body weight. It is a reactive remedy to the lost body weight, body strength and lost nutritional needs to endure cancer treatment, rather than a proactive remedy that works with the cancer patient during treatment to maintain body weight and physical strength, increase their nutritional requirements and ward off infections.When the oncologist prescribes the product Boost or Ensure to supplement the cancer patient's nutritional needs, or requires a feeding tube be inserted, the cancer patient has neglected taking charge of their body's well being. They have allowed the cancer treatment process to take charge of their body's well being with one of many reactive remedies.

The body's ability to fight cancer, endure the treatment process, stay strong, recover from each treatment round and ward off infection is one tough task that needs the commitment and rigor of the cancer patient. It's one tough journey for you and your body. Don't let the treatment process take charge of your body's well being. It could happen at some time anyway but if you take charge of your body's well being, you increase your ability to endure the treatment and improve the success of your treatment.

Wednesday, October 22, 2014

The Dread of Dehydration

Good Morning Cancer Patients and Caregivers;
Dehydration is one side effect that sneaks up on you when you are in treatment. Your oncologist and cancer treatment team will encourage you to consume mass quantities of fluids when you are being treated so you don't get dehydrated. When I was going through chemo treatment they even infused hydration into me so I wouldn't become dehydrated. With all the attention to dehydration and the consumption of mass quantities of fluids, I became dehydrated anyway,at the completion of the radiation treatment and continuous chemo infusion.

When I completed the radiation and continuous chemo infusion I was in the oncologist office for a check-up. He informed me I had become dehydrated and wanted me to come in the next day for an infusion of hydration mix. I told him I was going to the lake to recover and assured him I would consume mass quantities of my favorite summer time fluids. He insisted I come first thing in the morning and informed me that my self-hydration plan was insufficient to replenish the needed hydration I required. Begrudgingly, I came in for the hydration infusion that was completed in about an hour. Although getting hydrated kept me from leaving for the lake first thing in the morning, the effects of the hydration did make me feel better. So I left an hour latter for the lake and kept myself hydrated with my favorite summer time fluids.

I can't say I felt bad being dehydrated. The way I was shown I was dehydrated, the nurse pinched the skin on my forearm before my wrist. If the pinched skin remained pinched and vertical as mine did at the time, I was dehydrated. If the pinched skin returned to its horizontal position I was not dehydrated. What made the matter worse was I had been put on a meds to remove the liquids that were accumulating in my lungs so I couldn't tell if I was drying out from the meds or from the chemo and radiation, regardless of how much liquids I consumed. It seemed like another cancer conspiracy, I needed to consume mass quantities of fluids to stay hydrated during treatment but needed to take meds to remove fluids from my lungs. I'm sure the combination of treatment and the meds contributed to the dehydration.

There doesn't seem to be an easy answer to this problem and maybe there isn't one. Treatment can dehydrate you if you do not hydrate your system. I know I hydrated my system but apparently it was insufficient to keep from becoming dehydrated.

Dehydration is just another side effect to put on your watch list when you are in treatment. Consume mass quantities of healthy fluids (water, tea, Gatorade, coffee, milk, soup, shakes, et al) and be aware of the potential to become dehydrated. If you become dehydrated during treatment, it should not be from your lack of hydration but from the side effects of the treatment.

Stay strong, keep your sense of humor and never give up.

Wednesday, August 6, 2014

Good Things About Cancer Treatment

Good Morning Cancer Patients and Caregivers;
Every year when the month of August rolls around I remember the physical state I was in having completed two rounds of chemo treatment from June and July that required me to sit in an infusion chair for 5 hours, for 5 days in a week and repeat it the next month. When August came, I started 25 days of radiation treatment while carrying a 24 hour chemo infusion pack. I was getting pretty run down and chemo'd out. I knew there was more to come on the journey. 

I have never been a half empty or half full guy but thought there must be something good about cancer treatment besides reminding you of your mortality. About the 18th of August I started putting together a list of the good things I had experienced from cancer treatment. First, the test results showed shrinking of the tumor and my health was stable. I also noticed that chemo brain had set in, and for the life of me, I couldn't figure out why I did certain things, but it didn't bother me. I began to put a list together of the good things about cancer treatment, specifically chemo and radiation.
  • Mosquitoes, tics and chiggers won't bite you.
  • If you need to lose weight, 5 days of chemo will do it quickly.
  • Legal use of steroids.
  • No need to shave.
  • A bald head dries fast.
  • Won't need to get a haircut for a while.
  • Eat foods you don't like because you have no sense of taste.
  • Beer is one of the few things I could taste.
  • You could apply for a handicap parking tag.
  • Blame everything on chemo brain.
  • Get more sleep.
  • Sunburned without being in the sun. 
  • Pleased with small accomplishments
  • Much lower set of expectations
I’m sure there are more but this was the list I remember developing one day when I was not feeling very well and just needed to lift my spirits.

 When the treatment has got you down and your spirits could use a lift, try this. Best case, it will create a diversion so you take your mind off not feeling well. Use your sense of humor and make it work for you.

Stay strong, keep your sense of humor and never give up.

Thursday, June 19, 2014

The Treatment May Kill You, If You Let It

Good Morning Cancer Patients and Caregivers;
 If the cancer doesn't kill you, the treatment may, if you don't do everything possible to help your body withstand and recover from the tremendous abuse treatment inflicts. Although more cancer treatments are becoming focused on the infected area, chemo and radiation treatment create enormous collateral damage of good body cells while attacking the cancer cells. The collateral damage increases with every round of treatment and the high stakes poker game begins. The reality is, the treatment team is trying to kill the cancer before the cancer or the treatment kills the cancer patient. Doing nothing to assist your body recover from each round of treatment or to help it endure the treatment, I believe, reduces the chances of the treatment being successful because the treatment either has to be discontinued or its treatment strength reduced because the cancer patient cannot endure the treatment's effects.

Let's face it. Going through cancer treatment can be the worst battle of your life and for your life. Every cancer patient must decide to get Mad Dog Mad and buck up for treatment. There is nothing easy about cancer treatment as the side effects after each round of treatment compound  and get worse. When you reach the point during treatment you cannot tolerate anymore devastation to your body, is the time to dig deep inside yourself to muster up your inner strength to go the distance. Your attitude needs to become, Cure Me or Kill Me with treatment.

Every oncologist knows when a cancer patient loses greater than 10% of their body weight during treatment, the outcome for success is greatly reduced. As your body weight declines, your strength, stamina and ability of your body to ward off infections to keep from getting sick are greatly reduced. The cancer patient needs to be proactive in the treatment process and help their body stay strong and healthy during treatment and minimize the collateral damage treatment causes to the body. The physical, nutritional and mental body components need to be cared for and enforced, to improve tolerance of the treatment side effects and recovery between treatments.

Cancer treatment is not a journey anyone should look forward to. More cancer patients are surviving cancer and are living with cancer than ever before. Improving the success of the treatment can be influenced greatly by the cancer patient and their ability to support and nourish their body to help it endure the treatment and recover. Don't let the treatment's collateral damage cause the outcome of treatment's success.

Thursday, May 8, 2014

Sharing the Medical Tribal Knowledge

Good Morning Cancer Patients and Caregivers;

I recently provided a continuing education session for the cancer practitioners of a large hospital program, as part of their Cancer Care Spring Session.  Toward the end of the session, a discussion started with an oncologist regarding a cancer patient that was not actively participating in their treatment process and the reason could be they may be going through depression. I asked the oncologist the question: If you only spend 7 to 10 minutes with a cancer patient, how would you know if the patient is going through depression? The answer was: He wouldn’t know. Unfortunately, the cancer patient loses out because it is not recognized they are going through depression which should be treated. I challenged the oncologist about how they would suspect depression, and he explained, from experience. I called it Medical Tribal Knowledge

The knowledge gained through years of treating cancer patients, is well known among the practitioners but is seldom deliberately shared with cancer patients. Additional examples of medical tribal knowledge include: if 10 percent of the cancer patients weight is lost during treatment, the treatment success will diminish; chemo brain as a result of extensive or aggressive treatment; lack of increased nutrition and an exercise regiment to improve treatment success; and many more tribal knowledge facts I continue to learn about.
The abundance of medical tribal knowledge facts should be communicated and known by the cancer patient but because of numerous reasons, are not shared with cancer patients. The treatment process, regulation and insurance reimbursement for services may all be contributing factors. Undoubtedly, there is a shortage of man power in the oncology profession.  Oncologists get paid to provide treatment, not to provide counseling. Yet, cancer patients expect a better quality of life and quality of cancer care and treatment. There is a huge chasm between treatment vs cancer care and this chasm can be seen among the older and younger generations of oncologist. The chasm is growing as regulations dictate what activities the medical profession will be paid to provide.

The cancer patient can’t wait for the chasm to be filled. Cancer is a relentless 24/7 enemy that doesn’t rest, and the cancer patient should make certain their oncologist is the leader of the cancer treatment team and process. In addition, the cancer patient needs to be proactive in their treatment process and access the medical tribal knowledge from their oncologist and treatment team. There is an abundance of medical tribal knowledge facts cancer patients should be informed about. The only way to glean this knowledge is for the cancer patient to be proactive in their treatment process, with their oncologist and cancer treatment team. In addition, every cancer patient should be eagerly willing to share with other cancer patients the tribal knowledge facts they have gained. 

The battle with cancer may be the worst battle of your life and for your life, for most people. Every medical tribal knowledge piece of information that can be gained by the cancer patient may just be the pearl of wisdom that makes the difference in their treatment success.

Monday, February 17, 2014

Know Your Cancer Treatment Journey

Good Morning Cancer Patients and Caregivers;

Your cancer treatment journey will be filled with numerous unknowns. If you have never been diagnosed with cancer and haven't had previous cancer treatment, you probably don't know what to expect from the cancer treatment journey. When you are diagnosed your oncologist will establish a treatment regime and follow a treatment protocal for your cancer. The oncologist will communicate the treatment protocal to you and will monitor the results of the treatment as it is given. Unfortunately, the cancer patient and caregiver are generally still in shock from the news of being diagnosed with cancer and tend to muddle along through the treatment not knowing what the treatment process entails. Moreover, the less the cancer patient knows and understands about the treatment they are going through, the lower participation the cancer patient has in the treatment process.

When I was diagnosed with esophageal cancer, I had no idea what esophageal cancer was, let alone having any knowledge about the treatment regime being prescribed. Since I don't like surprises, and there were an abundance of those during treatment, Linda and I decided we needed to know our enemy (esophageal cancer) and become familiar with the treatment protocal and options I may have. As we gained more knowledge from our oncologist and from research about the cancer, the intense fear we were experiencing began to subside. After about the first month of treatment we were pretty familiar with the process and new the treatment regime and surgery requirements. I didn't like it but at least I knew what the journey would look like as it progressed. The more we learned about the treatment and the progress I was making in the treatment, the more informed we were and able to make rational decisions and choices.

The National Comprehensive Cancer Network (NCCN) has a valuable web site resource that can provide you with a wealth of information about your specific cancer and the treatment regime you can expect along with the choices that can be made. The site is at Once you have the site up on the home page, scroll down to the section NCCN Guidelines for Treatment of Cancer by Site. This lists all the cancers. Scroll until you find your cancer and click on it. Then click on the NCCN Guidelines for Patients. This will bring up the specifics about your cancer. The one for esophageal cancer is 100 pages long. This is a valuable resource if you want to know what your cancer treatment journey will look like.

I found knowing was much better than being surprised. It gave me the opportunity to ask questions and resolve any anxiety I may have had. Being knowledgeable about the treatment also helped me deal with the fear factor. Know your enemy and your treatment journey so treatment can be done with you rather than to you.

Stay strong, keep your sense of humor and never give up.

Wednesday, January 15, 2014

Managing the Insurance and Medical Expense Maze

Good Morning Cancer Patients and Caregivers:
As you probably already know, reconciling the medical expenses for cancer treatment with your health insurance company is time consuming, frustrating and just plain annoying. Why should anything be so complicated and difficult. The reconciliation effort to determine what expenses you are responsible for after the insurance coverage has been applied is a major undertaking when you are in treatment. In fact, it is equally a major undertaking when you are not in treatment and incurring medical expenses.

Based on our experience working through the maze of charges, deductibles, insurance pay and discounted charges for care, is on set of documentation and record keeping. Not to mention the enormous inaccuracies and errors in charges for medical care reported by the hospital, doctors' offices and any other medical care provider all demanding payment. Meanwhile, you are not necessarily up to your best while going through treatment or recovering from surgery or having other medical procedures being performed.

The process we developed to deal with the maze was a result of necessity. First do not pay the first invoice from the hospital or any medical provider. They have submitted their invoices for payment to the insurance company and are expecting you to cover the remaining cost. We found that if you wait, the insurance company sends you a notice of medical payment and the amount they will cover. You then verify the insurance covered procedures and expenses with the medical providers expenses to determine if they match. If they do not match, you contact the insurance company and medical provider regarding the discrepancies.

We always found numerous errors in the medical providers' expenses for procedures that were not performed and for days we were not at the medical provider. We also found there were expenses that the insurance should and would cover but because they were incorrectly coded by the medical provider, they were not covered by insurance. Numerous other errors and inaccuracies were discovered by comparing the expenses, verifying procedures and dates of service as well as challenging the coding. Many times the insurance company and the medical providers worked the discrepancies out between them and the final expenses we were responsible for were greatly reduced or eliminated.

To get organized, keep a calendar of your medical appointments for treatment and any medical procedures you have. Keep a binder or file to organize the invoices by the insurance carrier and the medical provider by date of service. Review and compare the charges and procedures for accuracy and validate they were performed. Document any discrepancies and contact the company making the error. Document the name of the person, date and phone number of the company representative you spoke with regarding the discrepancy. Make no payment for expenses until the discrepancies are reconciled to your satisfaction and the errors are corrected.

It shouldn't be this tough but the medical payment system and business processes are perfectly designed to make it this tough. So, be patient, don't get frustrated, don't pay the first invoice and be relentless in your efforts to make the provider and the insurance company get it right.

Stay strong, keep your sense of humor and never give up.