Dave's Cancer Fight

A Guest Blog Post Encouraging Cancer Patients

2011-07-25T11:03:00.001-05:00

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

2008-11-16T17:33:00.002-06:00

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

2008-10-21T20:55:00.004-05:00

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

2008-08-17T21:10:00.002-05:00

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

2008-07-08T21:46:00.001-05:00

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

2008-05-18T18:02:00.000-05:00

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

2008-05-10T13:56:00.000-05:00

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.

EDG Procedure Number Two

2008-04-20T21:55:00.002-05:00

Its been a while since I’ve posted an entry. Since I had my first EDG procedure (this is the abbreviated name for the throat stretching), my life became much busier than before. I began driving into work, logging about 20 hours a week. Additionally, I started speech therapy twice a week. All of these new activities resulted in more fatigue that I like to admit. As many of you know, I’ve been very active my entire life running nearly every day. So, its hard for me to come to grips with the fact that I tire by doing activities I don’t consider exercise.

Speech therapy has been challenging. Returning my tongue to normal movement is going to take effort and time. Back in January, I was not able to protrude my tongue beyond my lips. Now, I can extend it almost an inch. However, the tip of the tongue still does not move well to the right. Over the past two weeks, I’ve been able to advance the tip from moving as far as the midpoint to now about ¼ inch past the midline. It is a bizarre feeling to tell a muscle in your body to do something and not have it respond. My speech therapist encourages me to be patient. I continue to do these exercises daily so I will be able to use my tongue to speak clearly, move food in my mouth and play my trumpet with accuracy.

On Friday, I had my second EDG procedure. My esophagus, which was opened from 1 mm to 10 mm in the initial procedure, had closed to about 3.5 mm. While this was expected, I was surprised as I did not notice much difference in my ability to swallow during the past two weeks. Because the opening was initially so small, it may have narrowed significantly within a day of the first procedure. The GI doctor was able to open my esophagus to 11 mm this time. The goal is 18-20 mm.

I’m beginning to accept the fact I may have my feeding tube for quite some time. Over the past few weeks, I’ve replaced one of my tube feedings each day with a meal by mouth. Smoothies, creamy soups and jell-o have been my foods of choice. They say pastas will be in my diet by summertime. I will return in about three weeks for another EDG procedure.

I also had a visit to my ENT physician since my last post. It was a very positive visit, and he was pleased with my progress. Based on his examination of the lump in my lymph node, he decided taking a second sample to check for cancer will not be necessary. The lump is continuing to shrink. The next test to validate the cancer is gone will be a full body PET scan the first week of May. I meet with my oncologist May 15 to learn the results.

Thank you again for all of your support. Your prayers, Bible verses, letters, emails and blog posts encourage me when I’m frustrated or tired. You are helping my recovery. Every single communication I receive brings joy to my heart. Thank you for your friendship.

Only a millimeter?

2008-04-03T22:02:00.001-05:00

In my last post, I talked about the possibility this would be a pivotal week. This week has been filled with good news and several changes that will lead me toward a more normal life.

On Tuesday, I had outpatient surgery to stretch my throat. The procedure was done with a fluoroscope. This allowed the surgeon to watch a live x-ray on a monitor as he operated. As I waited on the operating table I described for the surgeon my experience with swallowing. As I did this he turned to the nurse and requested she retrieve the infant instruments. After surgery, I learned why. The diameter of my esophagus was only one millimeter wide. Yes, about the size of a pen tip. He was able to open it to a diameter of ten millimeters. To eat solid food, additional surgeries will be required to achieve a width of 18 – 20 millimeters. For now, I am able to drink smoothies and eat food up to the consistency of apple sauce. I intend to replace one of my daily tube feedings with a smoothie or soup eaten by mouth.

Learning the remarkably small opening at the top of my esophagus explains what I’ve experienced since I began sipping fluids in late February. If I sipped too much water, I would have to wait until a gurgling sound and minor discomfort stopped. On one occasion, I was sipping some chicken broth made from Campbell’s Chicken and Stars soup. I tried to chew and swallow a single piece of rice. I could not swallow it, which now makes sense given the narrow opening of my esophagus.

I am told I will have multiple procedures to normalize my esophagus. The procedure, which only takes ten to fifteen minutes, uses an instrument to mechanically stretch the scar tissue from the radiation. Between procedures, the esophagus will narrow slightly. The narrowing lessens over time, and in many patients stops. In others, the narrowing continues and the procedure must be performed one or two times a year to maintain the normal esophageal opening. I don't think Theresa will mind If I have this done often. She gets a kick out of my anesthesia induced jovial behavior after I wake up from the procedure. ;-)

On Thursday, I had an appointment with my radiation oncologist. He was very pleased with my progress. The lymph node continues to shrink, and his examination led him to say there is nothing he found to concern him. He schedule me for a PET scan in early May. This test will scan my entire body for cancer, and I hope will be another validation my treatment was successful. Additionally, he recommended me for speech therapy to advance the mobility of my tongue.

Finally, we discussed my return to work. I had hoped to gain approval to work 30 hours a week, but received his support for up to 20 hours a week. This is probably best. On the few occasions I have ventured out for more than a couple of hours, I’ve found I tire quickly. So beginning next week, I will travel into work on most days, instead of working from home. This is one more step in my journey to return to a more normal life.

Pivotal Events Next Week

2008-03-29T09:20:00.003-05:00

Next week, the first week of April, will present a two opportunities for me to return to a more normal life. On Tuesday, I will have my first outpatient surgery to stretch my throat. I'm anxious to learn how my swallowing will improve after this procedure. I'm told it may take several procedures to achieve normal swallowing. Even if this initial attempt allows me to eat some foods, it will be a win. Another benefit I'm looking forward to is the ability to sleep in a lying position. I still must sleep in a sitting position due to the pooling of fluids in the back of my throat.

Then on Thursday I meet with my oncologist. I am going to request his permission to return to work up to 30 hours a week beginning April 7th. I look forward to getting into the flow of life again. For me, working with my co-workers at American Century Investments is a big part of that.

I will target next Thursday evening for my next post. At that time, I will be able to provide an update on both my surgery and visit with my oncologist. Until then, take care.

Reclaiming My Independence

2008-03-19T18:31:00.003-05:00

During this battle with cancer, my reliance on others, especially my wife Theresa has been significant. I’ve always been independent… maybe too independent. Part of the reason my sentimental emotions have been so acute is directly related to receiving the love and support from so many of my friends and family.

My energy level continues to improve, and that has led to me reclaiming normal daily activities. Last Thursday I decided it was time to drive again. The look on Theresa’s face was priceless when I told her I was going out for a short drive. It may sound trivial, but to drive down the street, fill the car with gas, or drive my daughter to the nearby shopping district makes me feel like I’m part of society again. It’s a great feeling!

Early this week we received more good news regarding the result of treatments to destroy the cancer in my body. The lab results taken from the lump in my neck demonstrated no evidence of cancer. However, my ENT did not see any lymph cells either. So, he cannot be 100% sure the cancer is gone from the lymph node. There are one of two possibilities. First, only scar tissue is left. Second, he missed the target when he took four samples. I feel like I’m clean, but there is a slight chance the result could be a false positive.

When I visit the ENT again in early April, he will palpate my neck to determine whether the lump is smaller. If it is, then there will be no follow up. As the doc said, "We aren't concerned about lumps that are shrinking." If it is the same size, he will arrange to draw another sample, but this time in a radiology room so he can visually validate the sample he draws is indeed from the lymph node.

The gastroenterologist to whom I was referred is on vacation this week. I would like to begin sessions to mechanically stretch my throat next week. Theresa contacted his scheduling nurse. but we have not yet received a confirmation.

Now that I am driving and beginning to get out and about, the next big hurdle to returning to a more normal life is the ability to eat and swallow in a normal fashion. If all goes well, that may be only weeks away.

A Great Day In Kansas City

2008-03-12T22:15:00.002-05:00

Today the temperature reached the upper 70’s in Kansas City. The great weather, a good appointment with my ENT and a visit to American Century to celebrate the launch of a new web site made this one of the best days I’ve had in a very long time. Yes, my spirits are high, and that feels great.

My health continued to improve over the past week. I am beginning to feel more energy and I’m gaining confidence to participate in life events again. My tongue was the big winner this past week. The white on my tongue went away the middle of last week, and I no longer have stinging sensations on my tongue. My tongue looks and feels new. Probably because it is. The process of replacing radiation damaged cells with new cells is nearing completion. Movement is also better, but still weak on the right side. However, the additional movement makes it easier for me to pronounce words. Several people have commented that I am sounding more and more like myself. Hooray!

The visit to my ENT was also positive. He provided me with some medication to manage dry mouth. This drug will stimulate my salivary glands to produce the moisture my mouth needs to be healthy. I still have three to five months for my salivary glands to repair themselves. However, I’ve been told not to expect my mouth to ever again be as moist as it was before radiation, but I’m still hopeful to be an exception to the rule.

My ENT referred me to a GI doctor to have my throat stretched. As I mentioned last week, I’m now able to drink fluids. However, I am still unable to swallow anything more dense than the consistency of a thick fruit juice. Scar tissue built up from the radiation treatment blocks my ability to swallow in a normal fashion. I will undergo a series of treatments to mechanically stretch the scar tissue, which will promote a normal swallow. Some patients are set after this series of sessions, while others must schedule regular "maintenance" sessions a few times a year.

My visit with the ENT doctor closed with him taking a sample of my enlarged lymph node. Unlike the event in Pittsburgh where the three lab technicians performed fine needle aspiration on my neck without anesthesia, I received treatment to deaden the area before the fine needles were inserted to pull out samples of the mass in my neck. If you are ever given the option --- insist the area is deadened first. Much easier! ;-) I will know early next week if there are any remaining cancer cells. If so, I will have surgery. If not, it will be just one more piece of evidence pointing toward the successful defeat of the cancer that invaded my body.

Visiting American Century Investments and seeing my team members and business partners was uplifting. I tried to say a few words to the group, but couldn’t. Theresa stepped in when I found it difficult to speak. I tear up when I speak about my condition or thank people for the support they have provided me. I have spent so much of my life giving and now that I’m on the receiving end it is very humbling and touching. The eCommerce team and our IT business partners are such great people. I can hardly wait to once again work with them daily to meet the business challenges with which we are faced.

Next week I will report the results of the biopsy and hopefully have more information about stretching my throat. I can’t tell you how anxious I am to be able to eat food by my mouth again. There are way too many food commercials on TV. When even the fast food spots look good, you know its been too long since your last normal meal… 119 days… not that I’m counting. ;-)

Life is in the Details

2008-03-03T21:56:00.002-06:00

A week ago my spirits were high following good news from my doctors. My attitude was perfect to push the envelope on several fronts, and I did. I was also reminded of how far I still have to go.

Recovery from cancer in the base of one’s tongue presents several challenges. A healthy oral cavity is critical for speech, eating, drinking and in my case, playing the trumpet. Each oral cancer patient’s recovery is different as the treatment pattern and effects of radiation vary depending on the location and size of the cancerous tumor. My doctors continue to remind me it is not uncommon for patients to take a year to recover. As you can imagine, I do not want accept this. However, I’m finding there are some parts of this recovery I can’t push.

Last week, I made good progress in my ability to swallow. From early December until early February, I was not even able to swallow my own saliva. Last weekend, I sipped Arizona Green Tea in one ounce servings once or twice a day. Now, a week later I’m sipping two to three ounces of fluids about every hour. I also began to sip some soup, but I’m not yet able to take in much more than one or two ounces.

The main obstacle to my swallowing is a damaged area between the base of my tongue and the top of my esophagus on my right side. I am told some patients have to have this area stretched several times a year to maintain adequate swallowing capability. Time will tell on how this will play out for me.

My tongue also continues to improve. The stinging sensation from radiation burns is fading. During more intense periods, I was given a “magic mouthwash” that contained lidocaine to dull the discomfort. My tongue’s mobility is also improving, but I still cannot move my tongue to touch my teeth or cheek on the right side of my mouth.

Two other areas damaged by radiation include my salivary glands and facial hair. Theresa says she wouldn’t mind it if my facial hair didn’t return. My cheeks are much smoother! Right now my whiskers have returned for my moustache and a one-inch strip from my lower lip to my chin. My salivary glands, on the other hand, I hope will recover. Now that the blisters have healed, I’m left with radiation damaged salivary glands to moisten my mouth. They don’t produce enough moisture resulting in dry mouth. I swish with water regularly to keep my mouth from getting too dry. Finally, I’m happy to report my taste buds have recovered. So when I sip sweet tea or salty chicken broth, the taste is just as it should be. Whew!

While I will continue to strive to regain as much normalcy to my life as possible, I know the gift of life itself is blessing enough. So while I remained focused on returning to health, I thank God for each and every day of life I’m given.

A Much Better Week

2008-02-25T21:26:00.002-06:00

What a difference a week makes. Last week this time I was finally getting my nausea under control, but mentally I was down. I felt like I had taken several steps back. I was not where I hoped to be nearly two months after the end of aggressive radiation and chemo treatments. On the other hand, Theresa reminded me this is the first time in over two years I have not been on pain medication. With the withdrawal from pain medications behind me, my physical health improved through the week.

On Wednesday I had an appointment with my ENT. He was very pleased with my progress. The next visit, March 12, he will take a sample of my lymph node to validate the remaining lump is no longer cancerous. If by chance it is, I will undergo a neck dissection to remove the mass. The ENT also encouraged me to work up to three 3 oz drinks per day and to exercise my tongue by chewing gum. It takes me about two minutes to drink an ounce of Arizona Tea, but its getting easier each day. The gum, on the other hand, is difficult to chew. My tongue is becoming more mobile, but I still cannot move my tongue to the right past the mid-line of my mouth.

On Thursday I met with my radiation oncologist. He confirmed both the mass in the base of my tongue, and the mass in my lymph node have shrunk by 75%. While he won’t yet declare success, he says I am on the trajectory that leads to a successful outcome. He also encouraged me to play my trumpet, which forces me to exercise my tongue. I tried to play once or twice in January, but I was not able to form an embouchure. This time was different. While I have little strength, I am now playing my horn 20 minutes a day. Finally, the doctor agreed to approve increasing my work schedule to three hours a day. I am probably at least a month away from actually going into the office.

I’m anxious to learn what the next few weeks will bring. I feel like I’m on the cusp of more breakthroughs. To give myself the best chance of recovery, I’m currently doing the following activities to improve my physical and mental condition: lifting weights three times a week, walking on the treadmill, sipping fluids, playing my horn, chewing gum, staying away from public places and working 10-15 hours a week. And, in true “Dave” form, I have tracked all of these activities, my nutrition intake and medicines in an Excel spreadsheet.

Talk with you next week!

Nausea, CT Scan is positive, So many friends

2008-02-18T16:19:00.002-06:00

Its been a while since I’ve posted an entry. I have not felt physically well the past week. Nausea began around Tuesday increasing in intensity through the weekend. I’d recently began some new medications for my mouth that had side effects of nausea. So we shifted those medications, but the nausea only increased. We also inadvertently forgot to change my pain patch, which causes a variety of withdrawal symptoms, one of which is nausea. Since I’ve had no pain without the patch, we decided to move ahead with stopping its usage.

However, it was a casual conversation Theresa had before a rehearsal with our family doctor, who plays in the band with her, that lead to identification of the issue. He suggested the nausea was caused by an acid imbalance in my stomach due to the liquid food I’ve been consuming. Sure enough after taking a Pepcid, the symptoms reduced dramatically. We will work with the nutritionist after President’s Day to determine how to break this cycle.

On Thursday last week, I went to the hospital for a CT scan. We received a voice mail from the radiation oncologist office late Friday. She indicated the CT scan revealed positive results. Both cancerous masses are continuing to shrink. When Theresa spoke with our family doctor at band rehearsal, he indicated the CT results were impressive. I will meet with my ENT doctor this Wednesday and the radiology oncologist Thursday to receive more details. But, for now, it appears the treatment is having the desired effect on the cancerous masses. Thank you, God.

Finally, I would like to reinforce my appreciation to all of you for your support. I’m not sure this was best, but I decided early on to not respond to any blog post. I’ve found that increasingly difficult. I read every post, often more than once. I’m overwhelmed when I see posts from friends and co-workers I’ve not seen in years. I want to reach out and say, “Thank you for caring. Its so good to hear from you.” The cards, letters, emails and blog posts have come from so many different corners of my world. One doesn’t realize how many friends one has accumulated until times like this put a spotlight on that reality. I want to thank each of you from the bottom of my heart for reaching out with support, no matter how small. It really does keep my spirit in the right place, and brings back many fond memories from my life experiences.

Swallowing Test

2008-02-09T18:32:00.000-06:00

This past Thursday, I completed a video swallow test to determine what, if any, nutrition I could begin to take by mouth. Here is how the test works. First, while sitting in a chair, a “video x-ray” machine is positioned to record the motion of one’s oral cavity and throat. Second, a speech pathologist gives the patient white barium solutions with different consistencies to swallow. Finally, the radiologist and others watch the barium solution move through the mouth and throat to assess risk and swallowing capability of the patient.

To begin, the speech pathologist gave me a spoonful of barium the consistency of nectar. This went down okay. There was a little gurgle when I swallowed, but nothing of concern. Then I was given a spoonful of barium the consistency of honey. I was able to swallow, but there was some discomfort in my throat when I did. Finally, I was not able to swallow well when the consistency was as thick as pudding. My tongue had trouble manipulating the substance . Then when I swallowed my gag reflex was triggered.

For the entire test, none of my swallows indicated risk of aspiration. This is good! In other words, my throat was able to direct the solution to my esophagus and away from my wind pipe.

So while I would have liked to have advanced further, I am now cleared to begin swallowing liquids the consistency of nectar. We were given a substance to thicken broths and drinks to the right consistency. Initial attempts at sipping these liquids indicate I have a long way to go, but it is a step forward. For that, I’m thankful.

I am doing what I can to suppress my desire to have more normalcy to my life. Over the past six weeks since treatment stopped, I’ve gone through periods where I work to accelerate my recovery to times when I just sit back and wait for changes to occur. I find it best when just I accept where I’m at and enjoy life as I am able.

Finally, last week I began to work from home one to two hours a day. I’m very thankful to my boss and human resources for allowing me to begin working again, even though its minimal. This has helped my mind… and the days go by just a little bit quicker.

Talk with you soon.

Five Week Check Up: Good News!

2008-01-31T19:39:00.000-06:00

Today I had a check up with my lead oncology doctor. Going into the check up, I was not feeling positive about my progress. On the positive side, I’ve continued my weight gain of one pound a week. On the negative side, my mouth has not been healing as quickly as I’d expected. However, I must have set the expectation bar too high as the news Theresa and I received today was very positive.

First, the most encouraging news. After the doctor examined my oral cavity and felt my tongue, he announced that he could not detect the cancerous mass he identified back in November. While a physical exam is not definitive, it is encouraging to hear this news. He also noticed scar tissue was building near the top of my esophagus. To insure I am able to swallow with no restriction, a mechanical stretching of this area will probably be required.

The lymph node lump my oncologist has been monitoring also demonstrated encouraging changes. While the length and width were the same, it is definitely flattening and thus getting smaller. A CT scan and other tests will determine whether a neck dissection will be required to remove the remaining mass. This decision will be made in late February.

The only negative news was the identification of a mild case of thrush. Theresa and I suspected this as the top of my tongue began to turn white last week. This is a very common situation and is treated with medication. Removal of the thrush, which is a yeast infection, will reduce the discomfort I am experiencing inside my mouth.

Overall, this was a very encouraging check up. I was very pleased to hear the doctor say that even if surgery is required to remove the lump in my neck, we have a great chance of “hitting a home run.” Theresa and I interpreted that comment to mean there is a strong possibility of total success. He also noted that my recovery is progressing more quickly than most. So, while I feel frustrated with the pace of healing, I must remain thankful and patient.

February will be busy for me. Next week I will have a swallowing test. If all goes well, I will be cleared to begin shifting my food intake from the PEG tube to my mouth. After twelve weeks without tasting any food, I’m looking forward to a new found appreciation of taste. However, that may not come until my taste buds heal, which could be late this year. Then, the following week I will have a CT scan, which will be key for the check ups scheduled with my ENT physician and oncologist third full week of February.

To sum up, I am cautiously optimistic. Current evidence suggests I will be on the right side of the 50/50 odds I was given just twelve weeks ago. Then again, when God is involved odds don’t really matter, do they.

Update and Two Special Gifts

2008-01-27T21:12:00.000-06:00

This coming Thursday, the last day in January, I will meet with my lead oncology doctor for a check up. From my first meeting with him, he let me know the recovery period would be measured in months, not days. While I did not want to believe him, time is proving him right. The degree of damage caused by radiation and the rate of recovery varies by individual, but for my particular cancer and treatment, the convalescence can be two to six months.

This past week, was uneventful, and my mouth continued its slow healing process. The blisters on the inside of my cheeks are decreasing and I hope they will be gone within two weeks. My tongue still has a long way to recover, but I am gaining movement. I try to sip water a few times a day, but swallowing is not comfortable, yet.

I have received many special gifts and meaningful letters from friends and family over the past few months. While there is not enough space in this blog to begin to describe them, I would like to highlight two gifts I received from groups who are very important to me. First, over Christmas, members of my church made a bevy of Christmas tree ornaments with special messages. Theresa and I hung the handmade ornaments on a tree downstairs in the home theater room where I’ve been living. The tree and ornaments are a constant reminder of my church family, many of whom I’ve known for thirty to forty years. Theresa and I intend to put this tree up every year as a reminder of what we hope will be victory over cancer.

The second major gift I received just this past week. My friends and co-workers at American Century Investments made a quilt filled with personal, handwritten messages intertwined between the colorful quilt squares. The border of the quilt is, appropriately, a pattern of musical instruments and the word “jazz.” Another leadership team at American Century Investments has sent one or two cards of encouragement every week. I extend my most sincere thanks to all of you for these and the many other special gifts and notes you have sent me.

I plan to provide an update after my Thursday check up by Friday, February first.

An Emotional Haircut

2008-01-18T11:34:00.000-06:00

As my slow, but steady healing continues, Theresa and I are discussing how to add simple activities back into my life. For those of you who know me well, if I’m not busy, I’ll find a way to become busy. That has not been the case the past two months. I have not been seeking out things to do, but that is beginning to change. Now, as my fatigue begins to diminish and my health slowly returns, I’ve begun to add simple activities of 20 to 40 minutes to my day.

On Thursday, I went to my sister-in-laws’ salon to have my hair cut. While some types of chemotherapy result in the patient losing their hair, that was not the case with me. I did lose my beard and spots of hair where the radiation entered my head and neck. Otherwise, my naturally thick, coarse hair was unaffected by the treatment. So after nearly ten weeks without a hair cut, it was time!

What took me by surprise was how emotional I became when I stepped into the salon. I found myself fighting back tears as these people I barely know showed concern for my health. This caused me to wonder how will I react when I see close friends from work, church or music groups?

These intense emotions first flooded over me after I was diagnosed with stage IV cancer back in November. The depth of these emotions have grown more intense as I experience your overwhelming support day after day. The preciousness of life and my appreciation of the personal relationships I have with each of you are driving this deep seeded emotion. On several occasions, I have put down a card or walked away from reading an email because my emotional response to the words of support is more than I can handle. I am truly blown away by the love and support all of you have poured out to me.

I’m sure I will work through these emotions in time, but I suspect I will forever have a deeper sensitivity and appreciation for relationships whether casual acquaintance, close friend or family. It has been truly humbling to receive the caring, loving support from so many of you these past months. Thank you.

Initial Post-Treatment Check Up

2008-01-12T18:53:00.000-06:00

Friday I had my two-week post-treatment check up with my radiation oncologist. Most of the news was positive and one area was identified for monitoring. My doctor was encouraged by my weight gain of three pounds over the past two weeks and the low level of pain I’m experiencing. Both of these as well as the gradual healing of my neck from radiation burns and oral cavity indicate I’m on a good path to recover from the damage chemotherapy and radiation imposed on my body.

The area identified for monitoring is the lymph node on the right side of my neck. It did not shrink in size over the past two weeks. This lump will be monitored closely including a CT scan in mid-February. Then, in the third week of February a decision will be made if surgery to remove the lump is the best course of action. This is not uncommon, and in most instances the lump is scar tissue left from the radiation’s destruction of the cancer. It is also possible, treatment was not totally successful. It will be about two to three months before we will know if the treatment accomplished the goal of killing the cancer. This timeframe is consistent with what I was told from the beginning.

In the meantime, I’m praying for the lump to once again begin to shrink. As you can imagine, I prefer to not extend my recovery by another surgery. Then again, if that is what is required to resolve this episode with cancer, I must be thankful a remedy is available.

I had also hoped to be cleared for a swallowing test, but that was not to be. The swelling in my mouth and throat will need to diminish further to ensure an accurate test. My next appointment with the radiation oncologist is January 31st. If I continue to heal at the current rate, a swallowing test will likely be scheduled early in February. Until then, I will continue feeding through my PEG tube. My doctor has asked me to begin sipping water and swallowing to prepare me for the possibility of taking food by mouth in February.

Thanks again for your thoughts, prayers and support. This may be a slow recovery process, but I’m advancing one day at a time.

Contentment

2008-01-07T18:00:00.000-06:00

My blog entry today considers the attitude of contentment. Something that takes on a new meaning when you face death. When Theresa and I were first married, we would treat ourselves to a can of Cherry Hi-C. It doesn’t’ sound like much now, but against a $30 per week grocery bill it was a big discretionary treat. Twenty years later, we have a separate pantry just to store all of the food we buy, but don’t really need. Our level of contentment with food has changed along with our capacity to purchase food. This cycle played out very rapidly during my cancer treatment.

The most challenging time I faced physically during my battle with cancer was about four to six days after my second round of chemotherapy. During that time, I was pleading with God for relief from the nausea, fatigue and intense discomfort. I was elated when I could sit awake for just a few hours and talk with my family. Now a few weeks later, I’m wishing I didn’t have to sleep fourteen hours a day.

I am repeating a pattern typical of us all. Displeasure with current circumstances, then improvement. However, once the improvement grows old, desire for the next stage of improvement. There are positives and negatives with this reaction. On the positive side is the drive for us to advance and push our limits. On the negative side is lack of contentment and unhappiness with the current situation.

How am I reconciling this? I will not focus on what I desire and don’t yet have. I will begin by focusing on the positives of my situation to ensure I have an attitude of contentment. Then, I will plan and take action to improve my health. Rooting my attitude in contentment is a lesson I’m sure I’ll be able to transfer to many facets of my life – career, fitness, music, parenting, etc. However, that doesn’t mean I won’t put forth effort to get better at what I do. I’m too much of a competitor for that! ;-)

My health continues to improve. The radiation burns are no longer painful. I’m still shedding some skin, but the underlying skin is tough enough for exposure to the air. The blisters and burns inside my mouth continue to heal and my tongue is gaining movement. I hope to begin taking some food by mouth in the next week or so. I continue to sleep in a sitting position. I don’t feel safe lying down with the thick saliva and choking fits I have. I see the doctor on Friday and hope to learn what else I can do to add more normalcy to my daily routine.

Thanks again for your thoughts, prayers, emails, cards and letters. You are keeping my spirits bright. Talk with you again soon!

Recovery Slow As Promised

2008-01-02T21:33:00.000-06:00

I’ve been blessed with remarkable health during my lifetime. Before this bout with cancer, I had not missed work because of sickness in over ten years. When I do catch a stomach flu, its often gone in less than 12 hours. When heath professionals said my recovery from the chemo and radiation would be measured in week and months, not days, I knew my patience would be tested. In fact, recovery of some of my oral cavity functions could take up to a year.

So how am I doing, now that I’m a full five days away from my last day of treatment? I’ve begun to notice a subtle improvement in the blisters and burns inside of my mouth. Yippee! My radiation burns on my neck have worsened as the top layer of skin has left pink, raw new skin exposed. Ouch! This, I’m told will improve over the next week or so. I’m still very fatigued and sleeping about 14 hours a day. On a very positive note, a speech therapist from our church visited New Years eve. He works regularly with head and neck cancer patients. He said my swelling and oral function are where most patients are at three weeks post-treatment. So, I must be thankful my body tolerated radiation as well as it did.

I’ve begun to put on some weight, even though I’m still receiving all of my nutrition in liquid form through my feeding tube. To give myself a chance of regaining weight in the best possible way, I began very light exercise this week. On Monday, I walked a half mile on the treadmill and did a few arm curls. Today, I walked seven tenths of a mile and completed some arm curls. I never though it was possible to be winded and break a sweat walking just a half mile! I guess that is a sign of just how weak I am. Slowly but surely I hope to regain my strength.

I mentioned last week Elliott’s truck was totaled in a wreck. In the past, we would establish “performance standards” Elliott had to meet before we would step in to make him whole. Time will tell if our decision was best, but Theresa and I decided to teach Elliott about grace through this incident by replacing his truck today. We describe grace as something freely given to someone that is not deserved. In response to receiving something through grace, one is motivated by thankfulness to honor the giver through respect and obedience. This is how we respond to our divine blessings and the gift of salvation. We pray this situation will reinforce this truth with Elliott.

Talk with you soon!

Recovery Phase Here I Come!

2007-12-29T18:21:00.000-06:00

Well, I’m ready now to begin a new phase – recovery! Yesterday, I had my last two radiation treatments. I’ve been warned to not expect much change for a while. However, its hard not to anticipate each additional day removed from the treatment protocol designed to destroy the cancer, and in the process my health. For each day removed from the treatment, is one more day my body will utilize its divinely inherent healing process to repair itself.

I have been told there are some functions in my oral cavity that may not return, or only partially return to normal. Possible long term side effects include functionality of salivary glands and taste buds that loose their sensitivity. The radiation doctor carefully mapped out the application and intensity of radiation to mitigate these risks, but his first priority is killing the cancer, not insuring my mouth returns to its pre-treatment state. I have sipped liquids recently and noticed that sweet liquids and water taste awful, but chicken broth was closer to normal. Time will tell how this plays out. Again, a small sacrifice to have a chance at a cancer free life.

Last week was a bit of a rollercoaster for me. On Christmas Eve, I felt good enough to travel to my mom’s home a few minutes a way. This is where we have traditionally spent Christmas Eve as a family. No one expected me to have the strength to do this, so it was a real treat for us all. On Christmas day, I went for radiation treatment in the morning. The clinic was closed but my physician and a technician came in special to make sure my last week of treatment was on protocol (Thanks again to both of you!). My wife’s family and my family came to our home on Christmas for brunch. The previous evening was pretty exhausting for me, so I ended up spending much of Christmas sleeping. Then on Wednesday evening we received a phone call from Elliott. He was very shaken as he told me he just had a bad wreck. He and his girlfriend were returning from dinner when he hit “black ice” as I-435 North crosses the Missouri river. He spun out of control and eventually came to rest with his truck facing the wrong direction pinned against the guard rail. Theresa met Elliott at the emergency room. Elliott’s girlfriend was bruised and Elliott broke his nose, but nothing too serious. His truck was totaled. We focused on the protection God provided to shift his teenage mind from the loss of his favorite material possession to the physical protection God provided. More lessons and growth ahead on this front, I’m sure. Needless to say, the emotional energy on top of the final days of treatment resulted in me sleeping a lot Thursday and Friday to fight off the fatigue.

The events of the past week reinforces my resolve to beat cancer. There is so much I still want to provide my family in the way of guidance and support. I pray for God’s healing and the privilege to serve Him for many years to come.

Thanks again for your continued cards and notes of support. They are keeping our spirits bright! Talk with you soon.

Special Video

2007-12-24T13:49:00.000-06:00

Merry Christmas, and to my Jewish friends a belated happy Hanukkah.

As my friends and family know, music is an important part of my life. While my formal training was primarily orchestral, I've had the time of my life playing with a very special group the past two years called Soul Focus. We formed with the primary intent of representing American Century Investments in Fortune's Battle of the Corporate Bands.

Each year, over forty bands submit a three track CD to the competition. Eighteen are chosen to perform in three regional competitions. Finally, nine bands are chosen to advance to the finals held at the Rock and Roll Hall of Fame in Cleveland, Ohio. In our first year of competition we advanced to the finals and placed third. This year we won the finals competition! For the second year in a row, Soul Focus won the Fan's Choice Award, an online poll hosted at money.cnn.com

I cannot begin to describe the strong bonds Soul Focus members have formed with each other. The character and quality of each band member is truly extraordinary. In addition to my illness, three other members have been fighting serious health conditions,too. We are no longer just about music. We have become like family in our support for each other.

The name Soul Focus was originally a play on words for our music genre and the "sole focus" our company must have to win in the marketplace. A third meaning has emerged as this group of talented musicians has forged a connection that is indeed as deep as our "souls." Here is a link to our live competition at the Rock Hall. I hope you enjoy this clip of what can be called the best corporate band in America -- American Century Investments' Soul Focus.

This is a large file, and is best viewed on broadband connections. I hope you enjoy this 15 minute set. I know Soul Focus did! ;-)

Five weeks down!

2007-12-21T14:38:00.000-06:00

Within a few hours, I will have my last radiation treatment for this week. That marks five weeks down and one to go! Yes, I see the light at the end of the treatment tunnel, and eagerly anticipate next Friday afternoon. My challenge over the next few weeks will be managing the blistering and damage the radiation is doing to my mouth and throat.

Earlier this week, I noted a concern with my weight and the ability to establish a good nutritional routine. As the nausea from the December 10th chemo treatment began to wane this week, it became easier for me to keep my food down and halt my weight loss. Yesterday, I was able to achieve 2000 calories for the first time in ten days. (At its worst, I was able to achieve only 600 calories over three days.) I believe I’m now on the right track to slowly, but surely add a few pounds each week.

I’ve always been a believer in the power of goal setting. While they seem trivial, even small goals like increasing nutritional intake by one can of liquid food per day, or doing what is necessary to make every radiation treatment help maintain a positive spirit and attitude. In fact, its when our physical and mental capacity are the lowest that our goals should be the most achievable. This increases odds of success, which further builds our confidence to overcome the next, more difficult hurdle.

Another observation I’ve had over the past few days is how relative assessment of one’s physical well-being can be. Its no secret chemo affected my body in a way I was not able to easily tolerate. As the intense nausea and fatigue began to subside earlier this week, I commented to Theresa how I felt a thousand times better. Since it was nice out, she suggested I walk outside to get the mail. While I indeed felt remarkably better, the effort to get the mail quickly reminded me of just how far I still have to return to normal strength. I’m confident I will continue to get stronger, but I’m a bit further away than my relative improvement in physical condition led me to believe.

Talk with you soon. I hope to have a little treat in my next post.

Fighting Back from Chemo Round 2

2007-12-18T19:13:00.000-06:00

Just like round one of chemo, round two was a challenge to endure days four through seven. Recovery was a bit slower in round two, but now eight days out, I’m turning the corner and beginning to put the intense nausea behind me. I keep telling myself, this is a small price to pay for the potential benefits of a cancer free life.

The picture is a day or so after I received the chemo treatment. As you can tell by my smile, its also before the power of the chemo put its grip on by body. But, I thought you would all get a smile out of me in my bed, on my laptop, connected to the hospital Wi-Fi just being “Dave.”

The lead doctor is encouraged by my progress. While I’m beat up physically, there continue to be signs my body is responding as intended to the treatment protocol. Apparently, not everyone makes it as far through the protocol as I have already come.

A key concern at this point is my weight. I’m now about 117 lbs, a weight I’ve not experienced since junior high school, and 25 pounds less than my weight in May of this year. To give me the best chance of halting this slide in my weight, I’m now on a continuous pump feeding through my PEG tube. The doctor says there are more aggressive steps that can be taken if this approach does not halt my weight loss. Theresa and I are very focused on doing what we can to get this under control now, not later. We would appreciate your prayers regarding this matter.

In closing, I would again like to thank all of you for the support you are proving me through this journey. I want you to know Theresa is there on the front lines getting me through many a tough hour. She has been a caregiver extraordinaire twenty-four hours a day, seven-days a week. The toughness she has drawn on to achieve what she has in music, business and life has come through in flying colors as she constantly lifts me up physically, spiritually and emotionally. Words cannot begin to describe the intense appreciation I have for my lovely wife and the phenomenal support she is providing me. And, in times when she can’t help, so many of you have stepped in… my mom, the Riga’s, and so many other giving individuals. And, the cards, emails and notes with words of encouragement, levity, and spiritual insight each of you have sent are a source of strength for us. Keep the prayers and positive thoughts coming. We are doing what we can to beat this cancer so we have many years ahead to serve our Lord Jesus Christ on this earth.

Good News Week Four

2007-12-12T16:33:00.000-06:00

Week three of treatment opened with some good news. The main tumor is no longer referring pain up through the ear, and pain from this tumor overall has declined. This along with the return of the resonance in my voice is mounting circumstantial evidence the main tumor is shrinking. The secondary tumor in my lymph node has noticeably flattened and shrunk in size over the past week. The radiologist is pleased with the results over the first three weeks of treatment.

After an 8:00 AM Monday morning visit to the radiologist, I was admitted for in patient chemotherapy. For the past 50 hours or so I’ve received high doses of anti-nausea drugs and slept round the clock. If I continue on my current path, I will be released to return home from the hospital on Thursday. I continued daily radiation this week through the chemo treatment and recovery period.

I was concerned on how well I would weather this round of chemo given the difficulty I had with the first round. Thanks to God’s hand, your prayers and support, a great medical team, and a experience from the first round, this round of chemo is tough, but much better than the first.

The next physical challenges ahead include working through the rest of this round of chemo, and managing the mouth and throat pain from the radiation. As the radiation does what needs to be done to the cancerous tissue, it also adversely affects the healthy tissue of the mouth. This results in scaring, sores, flaking off of skin inside and outside of the throat area, etc. I’m told this will peak through the end of treatment on December 28th. Then the rate of healing from patient-to-patient can vary widely from a few months to the better part of a year.

I’m going back to sleep now. I’ll post again in a few days. Keep your prayers, thoughts and positive comments coming. Each day is one day closer to a victory!

Treatment Protocol 50% Complete

2007-12-08T16:08:00.000-06:00

This past Friday marked the half way point for my treatments. I’m told the side effects will increase until I either cry uncle, or the treatment protocol ends on December 28th. I plan on enduring the treatments with everything I’ve got so the chemo and radiation have a maximum chance of winning in the removal of this ugly disease.

I’m reminded of a 20-kilometer race when I was seventeen. I developed stomach cramps two laps into this 50 lap race. I trained too hard to step off the track, so I relaxed and took deep belly breaths for the next few laps. Finally, about two miles into the race, the cramps subsided and I was able to work my way back to my scheduled race splits and earn the right to compete in the senior men’s class-B national title race in Chicago that fall. I was fortunate to win that Chicago race for my first of two senior men’s racewalk titles during my senior year in high school. That same attitude of refusing to quit is what I’ll draw on over the next few weeks. After all, this is not as trite as an athletic competition, this is my life.

I’ve been absolutely overwhelmed by the volume of cards, emails, blog posts and more importantly the meaningful words of encouragement and laughter so many of you have provided me the past few weeks. They have made an deep impression on me. From so many corners of my life, I’ve heard from friends current and from my past. Its truly hard for me to grasp the outpouring of support. My thanks to each of you! Having never been seriously ill, or even sick for more that a day or two, I never fully appreciated the importance of reaching out in even the smallest way to encourage the sick. It sounds silly, but this is one of the many lessons I will take away from this experience.

On a lighter note, I have been keeping a spreadsheet to detail what are now important events in my daily life. (Yes, I'm sleeping with my laptop computer.) I monitor the volume of water, liquid food, body temperature, medicines and other bodily functions, complete with daily summaries. While I’ve set goals, I’ve learned there is no overriding the effects of the cancer treatments. I may ingest the amount of food I need to gain weight, but that does not mean my body will keep it. So, while I’m still focused on moving in the right direction, I’ve become a bit more patient with what my body will or will not allow me to do.

I’ll do my best to return to my earlier pace of posting to this blog. This past week I had little time where I was awake and feeling well enough to write. I enter the hospital Monday morning for chemo, and they plan for me to stay at least two days. Hopefully this will help me handle this round of chemo better than the last. Talk with you soon my friends.

Two Weeks Down

2007-12-02T19:29:00.000-06:00

Last Friday marked one-third completion of my treatments. The two rounds of radiation on Friday really sapped me over the weekend. I slept a lot. I did not realize the physical stress radiation puts on a cancer patients. When I sleep long and hard after radiation, I also have bizarre, unsettling dreams. I'm thankful for Theresa who is there to just listen and talk. She always helps to put the unsettled feeling behind me.

Whenever we face a trial or challenge in life, it is an opportunity for growth. I'm actively searching for both personal and family growth opportunities that may come out of my battle with cancer. My hope and prayer is for my family to draw closer together and deepen our appreciation for each other.

It may sound trite, but I've spent a lot of time lately thinking about all I appreciate about life and my family both big and small. I've always known these things on a conscious level, but sometimes it takes a significant event in ones life to trigger realization of the full perspective and ramifications of life.

Since childhood I’ve been good at learning life lessons vicariously. My parents pointed out how vices negatively affected peoples lives, and on the positive side how successful individuals set goals and used self-discipline to get ahead. I saw the evidence, and generally followed these examples, positive or negative.

As an adult I continued this pattern of actively observing and learning from others around me. I learned leadership and workplace skills by observing and applying, or in some cases rejecting examples of my peers and mentors. This cancer trial, is experiential for me. I pray those reading this blog will gain vicarious knowledge through my cancer experience.

I don't know what the end of this challenge will be, but I am looking at this trial as a way for me to grow in all dimensions of my life. I admire the elderly person who is spry and has a spring in their step. They have made conscious choices to continue learning, growing and maintaining a positive attitude. I look forward to developing the character that will allow me to be that spry, motivating elderly individual someday, too. I'm sure this fight with cancer will be a key growth opportunity to help get me there. I pray my memory of these lessons are long, and my application is good. This is one life lesson I prefer to not repeat. ;-)

Health Update

2007-11-29T20:39:00.001-06:00

Two days ago I posted I was showing early signs of pneumonia. The antibiotics have quickly addressed the issue. My fever went from a peak of 101 on Tuesday evening, to 99 on Wednesday and normal through most of today.

Prologue

2007-11-29T19:03:00.000-06:00

This post is out of sequence, but provides a complete summary of my two year journey to this point. I hope this story will motivate you to actively research and partner with your doctor and ask questions to learn your way through whatever personal or family health situations you face.

Over Christmas of 2005, I sensed the beginnings of a sore throat. I took AirBorne to fight the virus. Early sensations of a sore throat continued off and on through the balance of the winter. However, I never had the traditional body aches that accompany a head cold. Over spring break, I visited my family doctor who prescribed antibiotics to fight the symptoms.

By late June and another trip the family doctor, I moved to an ear-nose-throat specialist. After a few rounds of treatment that brought short-term, but no long-term success, he ordered a head and neck CT scan. The films did not reveal anything unusual. The ENT continued more tests and treatments including a biopsy of my right lingual tonsil in November of 2006. Test results showed no abnormalities.

Through 2006, difficulty and pain swallowing continued to build in waves, but the pain was never accompanied by body aches or fever. Each wave resulted in more intense symptoms. What began as minor irritation with swallowing and eating early in 2006, advanced to a narrowing set of foods in my diet. Bulky foods like Raisin Bran, heavy breads and meats took a lot of effort and were painful to eat. I also began taking Ibuprofen in the early fall to help manage the discomfort brought about by eating and playing my trumpet.

In January of 2007, my ENT physician decided it best to tap into University of Kansas Medical Center expertise. The second specialist I saw at KU Med suggested I had all the symptoms of a nerve disorder called glossophyrangeal neuralgia (GN). He prescribed anticonvulsant drugs, which provided quick and noticeable relief. However, after several days the improvement in pain faded, and returned to previous levels. It was recommended I up the dosage, which helped for a few days and then the pain and inability to swallow returned. This pattern is typical for GN patients.

Given the GN diagnosis fit my symptoms and the treatments had some positive results, I searched the Internet for experts on this neuralgia. I discovered several references to a physician in Pittsburgh who devised a surgery to resolve the neuralgia for which I had been diagnosed. I sent an email to him and went to see him in July. He prescribed a more aggressive anticonvulsant and we discussed surgery options.

In late June, I began to notice minor changes in my speech. By August speaking had become difficult all of the time, and I my speech sounded similar to a deaf person. Additionally, discomfort in my throat was now constant. GN symptoms are sporadic, not persistent. A clue I recognized and brought up with my doctors, but nerve disorders manifest in many different ways.

After several delays scheduling surgery, a November first date was set for an operation that would decompress blood vessels surrounding the ninth cranial nerve. This point in the journey marks a dramatic shift in my path to a cure for this ailment that began nearly two years prior.

Day of Scheduled Brain Surgery
The morning of November first, I remember seeing 11:50 AM on the wall in the operating room. The next I recall I saw 12:45 PM on the clock and wondered if all was well. I expected to be out of surgery after 2:00 PM. I was sedated, so I was not panicked, but I knew something was not right. The physician came so see me about 30 minutes later and told me they were not able to intubate (insert an air tube) me and had to cancel surgery. He ordered CT scan of my neck and informed me I would be in the hospital through the next day. He had secured their best ENT group to begin additional diagnosis.

On November second, the surgeon stopped by my hospital room in the morning to let me know he read the CT, but there was still more work to be done. Later that morning three pathologist came to my hospital room and each performed a biopsy of the lymph node in my neck without any anesthesia (Ouch!). They used a portable lab to read and discuss their findings outside my room. Another hour or so passed until an ENT stopped in to perform his evaluation. Theresa and my mom had left earlier for lunch. When he finished, he announced both his exam, the CT scan and the pathology results indicated I had cancer.

After the ENT left the room, I sat somewhat stunned by myself for perhaps 20 minutes or so. I used my iPhone to research what I assumed I had, cancer in the base of my tongue. When my Theresa and mom returned, I informed them of the new diagnosis. We grappled with it and I shared the web sites I found, which pointed toward a wide range of cure rates. There was a still a lot to learn. I asked for some paper and we began to plot a plan. The doctors suggested we head back to Kansas City to gain a second opinion.

We were discharged from the hospital around 4:00 PM that afternoon. We decided to drive back to KC that evening. As one could imagine, we just wanted to get home and begin dealing with this situation. We checked out of the hotel and hit the highway for KC by 5:30.

The trip back to KC was surreal. The good news is we finally knew what battle we were fighting. Our conversation was centered on our faith and positive actions we should take. My brother lives in St Louis. We were able to have lunch and spend time with Greg on Saturday.

That evening we arrived at home and broke the news to Elliott and Audrey. It was an emotional time. We focused our conversation on our faith and beliefs, and did our best to center and ground the family in preparation for this trial. Since the kids were young, we have set aside family time to study our faith and beliefs. Theresa and I always believed our primary role, as parents, is to instill values, beliefs and meaning from which our kids can make quality choices. No, our kids have not always made the best decisions, but we have done our best to give them the tools to make good choices. While Theresa and I are watching the kids closely nowadays, its good to see the wisdom we have taught them come to the surface in their words and actions.

2007-11-27T22:35:00.000-06:00

A quick update as of Tuesday evening.

First, I've included a picture of me preparing for radiation treatment. This will help you gain a sense of the experience, including the mesh mask that snaps tightly over my head and neck. The daily treatments last a little over 15 minutes. The choking feeling I initially had when snapped into the mask is abating as I become more familiar with this procedure. The protocol calls for six treatments a week (two on Friday) for six weeks. I am currently two days into the second week of radiation treatments.

Second, I've developed early signs of pneumonia. I'm on antibiotics, which are helping me fight a low grade fever. We caught this early, and hope to put this risk at bay in the next day or so.

Back Home

2007-11-26T18:16:00.000-06:00

A little after noon today, I was released from the hospital. Feels great to be home!

On Sunday morning, one of the doctors made it clear I would not be released from the hospital until Theresa and I could demonstrate we were able to care for my needs without the hospital staff, including the ability to take in adequate nutrition. After the doctor left, I created a table on the whiteboard in my room to record water and liquid food intake through my PEG tube. I knew it was important for me to increase the 8 ounces of liquid food I had ingested daily Thursday, Friday and Saturday.

Those who know me would not be surprised to hear having a goal, even small like this, helped me turn the corner. It was an emotional boost to achieve these little successes of filling out lines of the chart throughout the day.

By the end of Sunday, I consumed 70 ounces of fluids, 25 of which were food. I also moved around the room on my own and planned out small routine tasks to keep my mind focused on doing normal activities. So far today, I’m on track to exceed Sunday’s food intake and meet the targets set by my nutritionist. As I went to sleep on Sunday evening, I anticipated achieving even better nutritional intake Monday.

Knowing I have another round of chemo on December 10th, I’m making plans increase my physical capacity to tolerate the treatment, albeit small, over the next two weeks. This will include walking on a treadmill and exceeding my recommended caloric intake. I hope to be at a higher weight when I begin the next round of chemo. I know its important to move at a measured pace. I look forward to improving my physical condition over the next two weeks to prepare myself for the final round of chemo.

I met with both my chemo and radiation doctors today. The radiation doctor indicated he does not look for any change in a patients tumor until the second week of radiation treatments. He was surprised my voice began to return late last week, and said that was a very good sign. While physical examination indicates the tumor size has not changed perceptibly, it has softened considerably.

A review of responses to this blog demonstrates I have been blessed with a rich and diverse set of friends. I appreciate the different and unique relationships I have with each single one of you.

November 24 Update:: Chemo Hits with a Vengeance

2007-11-24T19:11:00.000-06:00

I will not use this blog as a way to detail my physical discomfort. Everyone who is affected by cancer and its aggressive treatments must endure unpleasant effects. This disease does not discriminate. The healing process is a journey. Here’s an update from the past few days.

Around 4:00 AM Thursday morning, Theresa and I realized managing my condition was beyond our ability and we checked into NKC Hospital. For the next few days, I slept, took meds, made it to my scheduled radiation treatment and had a few brief conversations with doctors and nurses. The health care professionals have been nothing short of amazing.

When I asked the chemo doctor about my nausea, she indicated cancer patients in the past rejected additional treatments of the type of chemo I’m receiving, even thought it was the only proven remedy for a specific cancer. Thankfully, there is a recent anti-nausea drug that reduces its side-effects. What a horrible thought to know there is a drug that will cure you, but you can’t bring yourself to accept treatment because of the severe side effects. I keep telling myself this is a small price to pay for the potential to put this challenge behind me.

Now some good news. This morning (Saturday) I called Theresa and she began crying. Why? My voice has begun to show signs its returning to normal. While there is still a long journey ahead, it is comforting to see God’s hand begin the healing process. If all goes well, I’ll be released Sunday or Monday.

Thank you for your continued prayers and support.

November 19 - 20 Update

2007-11-20T13:43:00.000-06:00

From the view of my medical team, my body is responding well and as expected to the radiation and chemotherapy treatments. From my view, I had hopped I would feel good enough to put in a few hours of work today. It was a bit silly of me to think I would somehow be less affected by chemo than others are. Humility is good, but I can't help but be optimistic about my recovery! -)

The past two days I've fought nausea, loved the fact I have a feeding tube to maintain nutrition and hydration and slept almost all the time. Not sure I've ever felt this sleepy. I'm told these symptoms will persist for several more days.

I've started a draft summary of this journey... if I were a Hollywood writer, this would be known as a prequel to this blog. What started as a sore throat in December 2005 morphed into my current diagnosis of cancer in the base of my tongue. If all goes well, I'll post this overview in a day or so. I will take time to write a "shorter letter", which will enable you to come up to speed on my two year journey in a few short minutes.

Take care, and thank you for the support all of you are providing. I find your posts uplifting and a great reminder of the many remarkable people I've been blessed to develop friendships with over my lifetime.

November 15 -16: Feeding Tube

2007-11-18T20:41:00.000-06:00

This visit to the hospital is to have a feeding tube placed. The surgeon threads a tube down my esophagus to my stomach. There is a light at the end of the tube which allows the surgeon to see where to make an incision and pull the tube through the skin. The end result is a flexible tube that extends 6-8 inches out from a spot that is about three fingers below my rib cage and an inch to the left of the midline of by abdomen.

The surgery went smoothly. In the operating room, the surgeon asked me if I was ready for the anesthesia. I looked at him with a serious face and said, “I think I’d like to try this without being put to sleep.” He began to explain there are some surgeries he does without putting the patient to sleep, but he did not advise that with this procedure. I then told him I was just kidding. Later in the recovery room his nurse stopped by to say the surgeon is always playing jokes, but no one was ever able to get him. She said it was fun to see the tables turned on him for a change.

I’m really glad this feeding tube (aka PEG tube) was a recommended. While my stomach muscles near the incision have been sore for a few days, it beats the pain of eating. Now my meals are ingested via a large syringe to funnel water and liquid meals through the feeding tube into my stomach. It only takes 15 minutes to “eat” a meal… with no pain!

For well over a year, I’ve experienced pain whenever I eat, sometimes lasting for a few hours. As a result, I’ve eaten less and less over time. My weight loss started in May when I was 141 lbs. I then dropped to 136 lbs in July, 132 lbs in October and 125 lbs today.

My doctors say the radiation will result in an extremely sore throat that will make it difficult, if not impossible to swallow. This PEG tube will help me achieve required nutrient and caloric intake. This will be my new way of eating during the six-week cancer treatment and possibly well into 2008… again, a small price to pay to overcome the cancer.

Sunday, Nov 18

2007-11-18T17:23:00.001-06:00

I woke up this morning anxious to begin treatment. Radiation went better than I expected. The mesh mask that snaps tightly over my head, neck and upper chest creates pressure on my throat making it difficult to swallow. I have to mentally relax as it would be easy for me to panic as it feels like I could choke with each swallow. Unlike the radiation preparation sessions which were up to 45 minutes of being strapped in, the actual treatments are only 15 minutes long. That's a relief. To stay mentally calm during these sessions, I mediate on God's attributes.

After leaving the radiation facility, which is located adjacent to the hospital complex, I was admitted for my first round of chemotherapy treatment at NKC Hospital. I received several hours of fluids and anti-nausea drugs by IV before the chemo was administered. The chemo drug itself took only about one hour to flow into my body. No nausea -- yet!

Overall everything went smoothly today. The radiation mask triggers pain in the tumor area and intense headaches... a small price to pay for a cure.

I'm in a new single-bed hospital room with WI-FI access. In fact I'm creating this entry from my hospital bed just moments after the chemo treatment finished. If all goes well, I will be released sometime on Monday.

Treatment Schedule

2007-11-17T17:35:00.000-06:00

The type and location of my cancer results in a high reliance on radiation treatment. The tumor is primarily located in the right side base of my tongue, but it does cross over the midline into the left side as well. This renders the tumor inoperable. It is not uncommon for tumors in the base of the tongue to be declared inoperable. The cancer has also spread to one lymph node in my neck.

The protocol is for six radiation treatments each week for six weeks. This will consist of daily treatments Monday through Thursday and two treatments each Friday. Chemotherapy is scheduled for day one and day 22 of the protocol.

I report at 8:45 AM Sunday morning November 18th for my first radiation treatment. Once radiation is complete, I will be admitted to NKC Hospital where the initial dose of chemotherapy will be administered. If all goes well I will be released sometime on Monday.

I know this will not be an easy journey, but I am excited to get this fight underway, grow from this experience and observe God's loving hand.

Theresa and I have been overwhelmed by the cards, emails, phone calls and home visits you have all given to provide us support. We deeply appreciate your prayers and thoughts.