Five Week Check Up: Good News!

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

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

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

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

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

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!