A Guest Blog Post Encouraging Cancer Patients

Why Cancer Patients Need Support Groups

If you have cancer or survived it, you almost certainly remember the exact moment when you received the diagnosis. First came shock, then perhaps denial, and then questions. Later that night, you may have lain awake, your mind full of worry and other powerful feelings. Usually, this is just the beginning of what is nearly always a very emotional journey. Thankfully, you don't need to take it alone.

Even if you think you have no need of a support group when you first attend a meeting, you will soon discover that the benefits of being there extend far beyond the walls of room. Those who participate almost always report that their group was a vital source of comfort. After all, cancer touches every area of your life. Often, you will need support as you adjust to changes in energy or physical abilities. If your oncologist has recommended surgeries, there may be changes to your appearance. Time off of work, and an altered role within your family may also affect you. The people in your support group will often have similar experiences. As a support group member, you'll discover a great sense of relief when you're able to talk freely about these challenges without needing to concern yourself with the affect it will have on your friends, spouse, or children.

The opportunity to learn from each other and lean on one another can make a challenging time in your life bearable. The effects of this support are measurable. In one study of women diagnosed with gynecological cancer, those who participated in a support group reported less depression and anxiety, better relationships with their caregivers, better sexual function, and a higher level of participation in leisure activities. In short, group therapy was an essential means of gaining a sense of control and hope.

Often, it is the recovery of empowerment that is hardest to attain. The modern view of cancer seems to imply that a positive attitude and clean living might make us immune to it. Thus, when a person has cancer through no fault of their own, the social stigma and even internal self-blame require the healing presence of an understanding community. There are different groups for many different types of cancer including but not limited to, breast cancer, melanoma, bone cancer and even very rare and terminal cancers. Groups that focus on healing and getting better usually have to do with the common cancer such as breast cancer. Yet there are also those groups that need to focus on coping with a deadly disease. For instance, many of those who have mesothelioma contracted it when they were exposed through work or warfare to asbestos. Mesothelioma prognosis is poor. The mesothelioma survival rate at 5 years is 10%. Thus, patients are often faced with reconciling their feelings about mortality while also navigating complex legal issues related to collecting compensation or veteran's benefits. While perhaps not identical, issues like these are part of every cancer patient's life. When so much about their lives might feel as if it is beyond their control, patients find great comfort knowing they can take a hand in determining their psychological and spiritual being via a cancer support group.

By: David Haas

One Year Later

A year ago on Sunday, November the 18th I received my first radiation treatment in the morning and my first chemotherapy in the afternoon. Today, I went to church in the morning with my family, watched some football and enjoyed God's wonderful creation by playing golf on a brisk 50 degree afternoon in Kansas City. What a difference a year makes. I have another PET scan in a few weeks, and all appears to be going as well as anyone could have expected.

I encourage you all to enjoy life and all the little joys it has to offer. The bad stuff comes and goes, but we can all choose our response to the ups and downs of life. Give your family and loved ones a hug. Try not to get caught up in self-centeredness, or seeing things only through your eyes and give others the patience, grace and understanding that strengthens relationships. Relationships matter. Cherish and nuture them. Make a positive difference in someones life -  as often as you can. Just as many of you did for me this past year. Thank you and God bless.

Dave

LiveSTRONG Challenge & PEG Tube Removed

Its been too long since I've updated this blog. I'll provide an update on my progress in a moment. First, I would like to call your attention to an event a member of my eBusiness team at work is participating in to fight the global battle against cancer. Jennifer Pumphrey, a very talented and inspiring individual, is riding in the LiveSTRONG Challenge in about 10 days. Please visit her web page at http://austin08.livestrong.org/jpu If you are so inclined, please support Jennifer in her effort to raise money for to fight this disease that adversely affects too many people on this planet.

Since I last wrote, I have participated in regular Vital Stim sessions before work three to four days a week. This treatment has helped my ability to swallow significantly. The variety of food I am able to swallow is expanding weekly. Water is my best friend while eating, especially if the food is dry like bread. I have also found sensitivity to hot and cold, and spicy is high. I tried some ketchup the other day and it about sent me through the roof. Who would have thought ketchup too hot to tolerate. I guess my love for mexican food will have to be put on the back "burner." ;-)

The last day of September I had my PEG tube removed. My doctors told me in August if I could maintain or gain weight for four weeks without using the feeding tube, they would approve its removal. You know me. Give me a goal and I'm ready to go. They also gave me a video swallow test before approving removal of my PEG. My epiglottis does not invert to cover my trachea, but I've developed a way to swallow that overcomes that deficiency. The removal of the PEG resulted in a second belly button. Someday, if I have grandkids, I'll have fun making up stories as to why grandpa has two belly buttons!

I also started playing golf again in early September. I finally gave up trying to keep my feeding tube wrapped up during a round of golf and just let it hang in my shirt. I just had to laugh to myself as there was no way to swing the club without the feeding tube unraveling.

So, in summary, all is going very well. All checkups with my doctors indicate my recovery is on the right path. Now its just a matter of being patient with the healing process and adjusting to the physical changes resulting from the treatments that saved my life. Talk with you soon.

Dave

Second PET Scan Yields Good Results

During the summer, I’ve made slow, but steady progress in my return to good health. I’m feeling stronger and I now only require 8.5 – 9 hours of sleep each evening. I continue to treasure every moment of every day, and the normal stresses of work and life don’t wear on me as they once did.

Last week I had a follow up PET scan to the one I had in May. This scan would both determine if cancer was present and if I could begin vital stem therapy. There was one area on the floor of my mouth that showed a low level of metabolic activity. However, the doctors and radiologist were not concerned, as it appeared to be a result of ongoing healing, not cancer. Yippee! There will be a follow up PET scan later this year, but it has not been scheduled.

On August 25th, I will begin vital stim therapy. This process involves the placement of electrodes on my neck. I will then be asked to drink fluids and swallow various types of food. The electrodes will send a stimulus through my swallowing muscles both strengthening and retraining them. I will receive this therapy four times a week for several weeks. While my ability to swallow has improved over the summer, it is still weak. Hopefully this therapy will drive the desired results.

Over the past several weeks, I’ve really pushed ahead with eating more food by mouth. Through the spring when I was exclusively using my feeding tube, I took in about 6 cans a day, or 42 cans of liquid food each week. This past week, I only had 6 cans through my tube and the rest was replaced by “regular” eating. Soft, moist foods work best like pasta, mashed potatoes and well-cooked vegetables. Water is my best friend, as the food does not clear my mouth fully when I swallow. Even though it takes 30-45 minutes to eat a meal that normally would take 10-15 minutes, it is such a joy to taste food again. And, yes, my taste has returned, which was no guarantee.

In addition to strengthening and retraining my swallowing muscles with vital stim, my esophagus still needs to be opened further. I have another EGD to dilate my esophagus August 19th. I’m approaching the point where the esophageal opening is considered functional, but it is still at about half the size of what is considered normal. I anticipate more EGD procedures through the fall.

If all goes well with vital stim therapy, I hope to have my PEG tube removed in late September or early October. The PEG tube is a rubbery plastic tube that is a little over a foot long with the diameter about the size of a pencil. It is positioned about three inches above my belly button. While it has clearly been a lifesaver, I’m looking forward to having it removed. I’ve had it since mid-November of 2007. If I can maintain, or gain weight for four weeks while eating by mouth, the doctors will approve its removal.

Thanks again for your support and your prayers. I’m getting closer to finishing my rehabilitation.

Relay for Life Event in KC

It’s been a while since I’ve updated everyone on my progress. I continue to have less fatigue, and I’m now able to work a 40-hour workweek. The combination of sleeping more than in the past and putting a priority on my trumpet, which is helping rehabilitation of my tongue and facial area, has resulted in not enough time for me to workout regularly. I hope to change that soon.

In late May, I transitioned from speech therapy to lymphoedema therapy. I still do not speak clearly, but until my tongue gains more mobility there is not a lot I can do to improve my diction. The lymphoedema therapy aids the function of my lymph nodes, which were damaged from the radiation treatment. A very gentle massage along the paths where the lymph nodes drain helps avoid pooling of fluids in my neck. I’m also working with this therapist to open my mouth further. When I began my mouth would open 2.5 cm. I’m now at 3 cm. My next goal is to open wide enough to fit two knuckles into my mouth. If you try this, you will probably be able to insert three knuckles between your teeth. Finally, this therapy is improving my neck’s range of motion. My mobility has improved 20 degrees or more in four of six directions.

For those of you in Kansas City, I would like to invite you to a Relay for Life event, which is sponsored by the American Cancer Society. The band Theresa and I play in, Soul Focus, will perform a 40-minute set beginning a little after 6:00 PM. The event is scheduled at Oak Grove Park, which is a few blocks east of North Oak Trafficway and 76th street in Gladstone, Missouri. It would be great to see and share our music with you. Nothing is required of you. Just show up and enjoy the music.

The weekend of June 21st Soul Focus played in Nashville as part of a combined Gibson Summer Jam and Battle of the Corporate Bands event. As past winners, we can’t compete again, but it was a blast playing at a big event again. The band opened with the Chicago song Beginnings. After I played the trumpet solo, Theresa, who was on stage singing, began crying. The depth of appreciation for the little joys in life has not waned for either of us. Both of us cherish moments in life and relationships with friends and family like we never have before. While I still am not able to perform technical elements on my horn like double tonguing, my embouchure strength has returned enough to play most music.

Since my last post in May, I had one EGD procedure. The good news is my esophagus only narrowed by 1 cm over six weeks. The GI doctor was able to increase the diameter to 16 mm in my last procedure on July 1st. While 18-20 cm is considered functional, most people have an opening of 25-30 cm.

In August, I will have another PET scan. If all goes well, I’ll be cleared for Vital Stem. This procedure will stimulate my swallowing muscles and retrain them. I’m able to eat by mouth one or two times a day. I’ve advanced to chunky soups and stews. I need a lot of liquid to help move the food down my throat.

While progress is slow, its sure and steady. I continue to be reminded of just how much one can live life without all of the abilities we take for granted. I always admired disabled individuals when they participated fully in life. And, while I’m far from disabled, I have a new appreciation for how one can feel just as much a part of society even thought all the pieces and parts may not work like they should.

PET Scan Results

On Thursday, May 15, we learned the long awaited results of my first PET scan since November. The results were just shy of perfect. A radiation oncologist who has not been involved in my treatment read the scan to avoid any potential bias. This oncologist thought the main tumor in the base of my tongue had been surgically removed. It was that gone! The lymph node has calcified and no cancer is present there either. This lump continues to shrink as my body slowly removes the dead remnants.

The PET scan revealed slight and scattered hot spots on the floor of my mouth which keep the results from being perfect. My oncologist said it is rare for cancer to spread there. It is probable these tiny hot spots are a result of me swallowing during the PET scan. Any muscle that is active during the scan will consume the glucose put into my veins. I recall swallowing hard multiple times during the scan. As a precaution, I will have another PET scan in August. In the meantime, I’m considering myself cancer free!

As my appointment came to an end, two nurses who have been helping me since the beginning of this journey asked if Theresa and I would participate in Relay for Life, a fund raiser for the American Cancer Society. Specifically, they asked if Soul Focus, the band formed by American Century Investments employees, would perform. I will include information on this blog, if the band is able to play at the July 18th event scheduled for Oak Grove Park in Gladstone, Missouri. The nurses hope my participation will be an encouragement to others fighting cancer. Another band member was diagnosed with cancer about two years ago. If all goes well there will be two cancer survivors performing as examples of God’s grace and the importance of fulfilling ones doctor’s protocol.

I had hoped to gain approval from my oncologist to begin Vital Stim, which is a procedure to trigger contraction of my tongue and swallowing muscles. While my esophagus is now wide enough for soft foods, my swallowing muscles are not effective at moving the food from the base of my tongue to the esophageal opening. My speech therapist has provided me a full compliment of exercises to strengthen these muscles, but the progress is very slow. Vital Stim is used to accelerate the rehabilitation process. However, there have been reports of Vital Stim triggering growth of cancer in the head and neck, if its used too soon after radiation. My oncologist, who is appropriately conservative, will approve use of this treatment when I have a PET scan that leaves no doubt the cancer is gone. The tiny hot spots on the floor of my mouth were enough to sway his decision against approving this treatment.

On Friday, I had my fourth in a series of EGD procedures. You may recall my esophagus was opened to 14mm two weeks ago. This time the doctor was able to advance it to 15mm. I will have my fifth procedure in about a month. In the meantime, I’ll keep working my swallowing muscles and pray my salivary glands and tongue mobility continue to improve. Thank you again for your letters, emails, support and prayers. You are making a difference in my life.

The New Normal

Over the past few weeks, I’ve reflected on how my daily routine and tasks have changed. I’m adapting to my “new normal.” On one hand, I’ve returned to many of the activities that filled my life before cancer – church, work, music and most importantly I’m able to provide my family emotional support and guidance again. On the other hand, there are many physical and emotional changes. Some of which may never be the same, but it doesn’t seem matter. The important parts of life are in place. Before I fall asleep each night, I thank God for one more day of life on this earth.

The physical changes range from the humorous to frustrating. My feeding tube has created a few laughs for me recently. While “eating” lunch in my office at work, the tube slipped out of my hand as I attempted to close it. After a few seconds of liquid spewing from the wiggling tube, I was able to get control and stop it. I just sat there and laughed at the thought of what just happened. This is one part of the “new normal” that shouldn’t last too much longer. On the frustrating side is my speech. While its getting better, I find my tongue gets tired when I engage in a conversation with someone at work. My mind is zipping along, while my tuckered out tongue is begging me to stop talking. Maybe forcing myself to be more concise in my communication will not be a bad thing. ;-)

There are many more examples of how my daily routines have changed, but I won’t detail them all here. The bottom line is my shift in mental attitude. I’ve moved from “I can’t wait to return to normal” to “accepting that normal will be different going forward.” I will continue to strive for improvement, but I realize that one can get along pretty well in life without all of the body functions most of us think of as normal.

On May 2nd, I had my third EDG procedure. It went better than expected. My esophagus did not narrow as it did after the first procedure. The doctor was able to open my throat to 14mm. The goal is 18-20mm. After my fourth procedure, which is scheduled for May 16th, the GI doctor told me it will be up to me to let him know if or when another procedure is required.

While my esophagus is now wide enough for me to eat soft foods, I’ve found my swallowing muscles are not efficient at moving the food between the base of my tongue to the esophagus. The one meal I eat each day by mouth has become an exercise to strengthen my swallowing muscles. Since my salivary glands are still not up to par, I also use water to help wash down the soft food. I view this as another positive step towards the “new normal.”

On May 8th, I had a PET scan, which is a reliable test to spot cancer in the body. I expect to learn the results when I meet with my oncologist May 15th. The first step in this test is to have glucose injected into your veins. Then after a 30 minute wait to allow circulation of glucose throughout the body, you lie down on a narrow table. This table moves you through a large cylinder that scans the body and provides an x-ray like picture of the body. Because cancer cells are metabolically very active, they consume the glucose and show up as hot spots on the PET scan. Here’s to a hot spot free PET scan result next week!

My apologies for the long delay between blog posts. I’ve heard from several of you wondering if everything is okay. To be honest, my work schedule has resulted in me being fatigued in the evenings and I’ve gotten lazy with my updates. I intend to provide another update next weekend after I learn the results of my PET scan. Until then, take care.