Screeching Halt

What in the world is going on? Everything seems to have come to a screeching halt.

Looking for the Truth

Since the transplant failed to achieve complete remission the decision was made to do exploratory surgery to find out exactly what was going on.
During that procedure on August 8, 2008, what appeared to be a large tumor that had my doctors very concerned, ended up being nothing. But while the surgeon was inside my abdominal area he took additional tissue samples as a precaution.

After being tested in the laboratory those additional biopsy samples showed the lymphoma had in fact transformed into a more aggressive cell type. I was told it was “Diffuse large B-cell lymphoma originating in the preexisting follicular lymphoma.” This surgery saved my life!

List of events

  1. August 2, 2008 — Tests, Waiting, and More Tests
  2. August 13, 2008 — Time to come clean
  3. August 18, 2008 — Believe in your heart
  4. August 22, 2008 — Still processing the news

  1. August 2, 2008 — Tests, Waiting, and More Tests
  2. It is always mindboggling for me to anticipate test results. And, as I told a couple of wonderful ladies this afternoon, that emotional stuff is difficult to deal with so I do my best to keep it in check.

    Very often I have to keep my mind focused upon the good things in life because difficult things seem to take over. Not only is that unhealthy, it is a snowball that can easily upset ones whole outlook on life.

    Tools like CarePages give people like me a way to communicate with other people. Now let me explain my purpose for communication with people here is to offer encouragement to them. It also gives me a single location to tell my story so the telephone calls and visits can be kept to a minimum. Plus, I am sure everyone has experienced the little drill, where one person tells a story to ten other people; then one at a time they tell the others what they heard. The end result is utter chaos. Often the story isn’t even recognizable by about the second iteration.

    Couple the fact that people only see and hear things from their perspective, their life experiences that focuses them upon the facts they hear and interpret within their realm of understanding, and it gets exasperated beyond recognition. Just imagine what the doctors and nurses must think about their patients and caregivers when they talk to us after the fact. Do you think we ever really understand what they tell us?

    With that background I will tell you that Friday, was the day I had blood tests run again, and got results from my recent PET and CT scans. Included in the news was the fact that I need additional tests run over the next week or so. After that is completed we will have more facts to fully understand where I am at this stage in my results from the autologous stem cell transplant I had on January 15, 2008. Once I know more I will be able to share the facts with you, but for now I must wait like I have done so many times over the years. Another piece of information I can share is that day was also my second month since the last seizure.

    I will ask that everyone pray for Deborah and me throughout this period of time. Waiting is difficult and God can and will fill our spirits and minds with his power and strength if we just ask him to. Your continued support will be appreciated. Don’t forget to keep all of the BMT doctors, nurses, and patients and their caregivers in your prayers as well.

    «Top of Page»» «List of Events»

  3. August 13, 2008 — Time to come clean
  4. Today is literally the first day I have been able to stay in bed and rest without my mind wandering and keeping me from getting the rest I need. I guess the drugs they have me on are working. My mind has been divided so much the past few months over things I had long ago made decisions about and put to bed. I found myself worrying again and that is not healthy for anyone. So I asked for help understanding and overcome those issues again with God’s wisdom replacing the worry.

    Several people noticed that my last post was ambiguous and contacted me for an explanation. I came clean with them and told them the truth. Here and now I want to confess I got caught up trying to keep peace where it is impossible to do so. Some people don’t understand and never will. Others are very perceptive and lend support especially with the going gets tough. And my goal for sharing my story and my experiences is to share the woes of a cancer patient’s existence, all of it including the ups and down.

    If you will be honest and think about the past years or months in your life you will see all our lives have ups and downs. It is those of us that choose to look for the ups to carry us beyond the occasional valley we all come upon that have an especially blessed life.

    After many years searching for the truth and trying to understand I finally learned I cannot change anyone except for Daryl Sprague. The rest is out of my hands. Except for the attitude I express towards the other people. My decision is always to share the Love of God with everyone no matter what. It works well for me. Even when the emotional times of chemo and the stem cell transplant drag my soul down into the midst of the mud I still raise my head up with God Almighty’s help to focus my spirit upon him. He always brings me through the storm and he has done that again. Like my Uncle Kenny always tells me to say, “Praise God.”

    Some of the best times I have had in my life have been spending time with My Uncle Kenny and Uncle Gary and they have both been there for me recently as well. You don’t have any idea what their love for their nephew can do for me. My aunt’s both boost my spirit too and I am the most blessed person on the earth to have them all in my court and praying for me. Thank you!

    The most disheartening news I have heard recently has been that my cancer is not following the rules. But those of us who know how this game is played know there are no rules for cancer. It is an evil thing that can only be overcome by God himself. The doctor’s who are the best (like all of mine are) will tell you they simply give us the medicine and God does the rest. I gain comfort and strength from my faith in God and his power being shown by my life. Recently I have had such an experience.

    On the big day a few weeks ago I went for my recent blood test, PET and CT scan results. The blood tests were normal. However, once again, the doctor carefully announced that we have problems based upon the scans results. This time it appeared the cancer was active and growing in just three short months between my three month and six month post transplant scans. It required immediate surgery to get an up-to-date biopsy from the area of concern, and formulate a plan.

    My oncologist already had the big picture scenario in place: surgery for the biopsy, chemotherapy to stop the growth, and an allogenic stem cell transplant as quickly as possible. I actually saw the surgeon and anesthesiologist before leaving his office that day and was checked into KUMED for the surgery on Friday, August 8, 2008. Yea, I started my own Olympic games that day as well.

    I just got home yesterday afternoon with news that the original biopsy shows no sign of cancer. There were some additional samples taken in other spots that show the same good information. Right now we are waiting on the final biopsy tests all to be completed to make sure.

    My new fashion statement includes what my Daddy would have called a zipper from top to bottom right beside my belly button. It’s pretty close to eight inches in length and has approximately 25 staples holding me closed right now. My next appointment to clarify everything is August 22, 2008. That day we pray God will reinforce the good news he has already given us a glimpse of. No cancer found.

    Let me close by saying I am doing well, I am sore, but I a bull headed about the heavy drugs because they make me sleepy. I hear that is a genetic thing from my Uncle Gary. It is so neat to hear I have things in common with that guy I love so much.

    Remember God loves you and he does all kinds of special things to show us his love. My story is a perfect example.

    «Top of Page»» «List of Events»

  5. August 18, 2008 — Believe in your heart
  6. Believe in your heart that something wonderful is about to happen.

    Love your life. Believe in your own power, in your own potential, and your own innate goodness.

    Wake every morning with the awe of just being alive. Discover in each day the magnificent, awesome beauty in the world.

    Explore and embrace life in yourself and in everyone you see each day.

    Reach within to find your own “specialness.” Amaze yourself and rouse those around you to the potential of each new day.

    Don’t be afraid to admit you’re less than perfect; this is the essence of our humanity.

    Let those who love you help you. Trust enough to be able to take.

    Look with hope to the horizon of today for today is all we truly have. Live this day well.

    Let a little sun out as well as in. Create your own rainbows.

    Be open to all your possibilities, all possibilities and miracles. Always believe in miracles.

    Author unknown

    «Top of Page»» «List of Events»

  7. August 22, 2008 — Still processing the news
  8. It is always wonderful to walk into the KUMED Cancer Center and see all the staff. I love seeing the patients and their caregivers coming and going because they are just like me. We have a lot in common.

    Today, it was the end of two long weeks of waiting. First, I had to wait for my body to heal from the surgery that left an eight inch incision in my belly. Second, the for the results of the biopsies the surgeon had carefully taken from inside my body to find out exactly what is going on just three short months after my last set of tests.

    I don’t know any way to break the news any easier than to say there was good news and bad news. The good news is the large mass was found to be scar tissue or in the words of the actual report “Fibroadipose tissue.” And the bad news was the other smaller samples that were removed came back with the report stating “Diffuse large B-cell lymphoma originating in the preexisting follicular lymphoma. Now we have the problem clearly defined.

    It will be yet another week before I see my oncologist to find out what these definite results mean to my treatment regimen. I did speak briefly with Dr. Skikne today and he said to talk to Dr. McGuirk about radiation. The doctor’s have a little homework to do on my medical case then get their heads together to determine how to handle my future medical care.

    This news reminded me that in the past I had a different diagnosis for my first recurrence in 2000. When I looked it up the description Dr. Kashyap gave me was “Diffuse Mixed Cell Lymphoma” along with the follicular B cell type. There sure is a lot to keep track of with non-Hodgkin’s lymphoma and I am glad I have the best doctors and medical team in the country caring for me. And that my beautiful bride is in my court!

    As I have mentioned before, my goal is to share my story to help educate patients about their role in a diagnosis and treatment regimen like this. Also, to educate people in the medical field about my experiences and how they impact my life. As you might expect there are good things and bad things in every scenario.

    Since I think I was born with my proverbial cup half-empty I try hard to flip that every morning to half-full. Bad news, or disappointing news, makes it more difficult. But I do have hope and faith that God is in control of everything. With that background I am working hard to see past the bad things to find some good things to report to the medical professionals so I can give them a measure of success along with the problems I identify along the way. May I ask you to do the same?

    Let’s all share our stories with other people to give them hope along the way. And I beg that you will also take note of the good things you experience and the problems that come your way and report these things to your doctors and nurses. When you are given the opportunity to fill out a survey for the organization that cares for you do so. Let the people at the decision-level know what you think. All our lives are at stake if we don’t take time to participate in this process.

    Most of all I ask everyone that reads this to pray for people who deal with medical conditions. Some are easier than cancer and chemo while others are more devastating. Either way we are all just people traveling this journey called life together. And, as a simple sign that was made a long time ago that still hangs in our office says, “People helping People get the job done.” Isn’t that really what we all are!

    «Top of Page»» «List of Events»