Lung Biopsy and Plotting a Course of Action

Dear Friends,
Yesterday (May 25) I had a lung biopsy procedure; which was an interesting experience. This is where a small probe is placed into my lung in order to sample one of the growing nodules present there. The doctor performing the procedure selected the largest nodule, which was in the left side, and was able to take the sample using a CT scan machine. The most direct route was through my back, so I had to lay on my stomach in the CT scan machine for about 2 hours; with partial sedation and alot of pain killer. It still hurt quite a bit, and was a strange experience feeling a probe going into my chest and lung (that is why it was "interesting"; which is the kindest word I could come up with). One positive aspect of this experience was again observing the incredible kindness and compassion of the hospital staff. One of the two doctors who perform these biopsy procedures had called me the night before, and went through the whole process just to set my mind at ease. The next morning when I got to the hospital, I found out that a different doctor would be doing the job; but still the doctor who had called me the night before made sure to find my prep room and assure me that the doctor on duty would do equally well and they had both studied my case. The nurses and other staff who handled me were equally kind; in fact the nurse who put in my drip needle did the best job ever (believe me, I have had alot of IV drips the past 9 months). The doctors who perform these chest related biopsy procedures said mine was a tough case in the lung area, because my nodules were so "small". What a thought, that something growing in your lungs can still be described as "small".... a good thought for the day. Another complication of these lung biopsy procedures is risk of the lung collapsing, due to removal of negative pressure naturally occuring in the lung. The location of my insertion was having a high risk for lung collapse, which would have required having a tube inserted into the chest cavity and then an overnight stay in the hospital. Fotunately, this did not happen and I was allowed to go home after a 4 hour observation period and 2 chest X-rays. In the > 24hrs since, I have not had any further problems and the pain is almost completely gone. Now the hope is that there was enough tissue from the biopsy to get a definitive pathology type leading to a course of treatment.

I also had a visit with my oncologist the day before the biopsy. Myself, Usha and my father attended this visit so that we could all listen to what was said and cross check notes afterward. We were really amazed at how much background research my oncologist had done in the one week since we last met. He had talked to others specializing in this type of situation, and consolidated the information into treatment options; assuming the biopsy reconfirms the original tumor type discovered last August. The institutes with most experience in this area (rhabdo type sarcoma in adults) are Sloan-Kettering in NYC (where we had our surgery and initial chemo schedule) and MD Anderson in Houston. Unfortunately, there is not alot of experience in this type of sarcoma in adults; and the next logical step uses different chemicals but is nothing really new. It is still mostly practiced in children. There are slight variations or additives that my oncologist will try, depending on effectiveness; but since my original course did not seem to eliminate all cancer cells; it is possible that this will also have limited success. The goal is to at least get the growth to stop and then take steps to have the nodules reabsorbed into the system; and go from there.

We also got another good lead through contacts which Usha has developed while serving on the Borad of Trustees with Donald Danforth Plant Science Center. One of the trustees is the CEO of Merck Inc.; which is actively involved in cancer drug research. Through this contact, we received information on early stage trials of an antibody based drug from 3 different companies which appears to show efficacy in sarcoma cases. One of the companies still had 2 openings in these trials, and would institute Phase II trials in the next few months at various hospitals. Information was also given for a coordinator of experimental trials in sarcoma cases, and this coordinator offered to talk with me or my doctor to explore options. We need to make a decision soon on how to participate in such experimental drug trials; but this new option may be required to find at least a temporary solution.

On the spiritual and emotional fronts, this is still a work in progress; which is true of everyone (we are all God's work in progress). There are really times of little joys (such as interacting with the hospital staff during my biopsy) and many times of dark thoughts. These negative thoughts can take over one's mind and affect physical health also. They do not help in building faith-based peace of mind and perspective; so must be done away with as much as possible. Sometimes it seems that this takes more strength than one person can handle. But it helps to have family and friends. One of my brothers has visited this weekend. He always seems to have good words for me, and during our walk together this morning he was really able to put life and after-life into perspective in such a way that my mind has been more peaceful today. Good family is another reason to praise God.

Thank you for all your cards, letters, emails, phone calls, and especially prayers. We need continued prayer for physical and emotional healing; as well as discernment on how to proceed. This week will really be important in coming to conclusions on how to proceed with treatments that will have the best chance of effectiveness. Here is a list of prayer requests:

-- That we have a definitive outcome of the biopsy, which leads to clear treatment options.
-- That we are able to make best decisions on participation in experimental drug trials; in which timing is critical.
-- Continued faith building through prayer and study, which will lead to peace for myself and family; but also will allow me to go beyond my situation and share with others so that they can benefit from whatever I have to offer.

I have heard many people share that cancer can be a life changing experience for the better, but requires perspective to grasp that opportunity. God surely puts us through these experiences to improve ourselves in the time we have to live. There are no guarantees for outcomes in this life, but God provides us with opportunities to learn and grow in Spirit. This growth can be seen by the positive effects we have on lives of other people. I hope this blog helps keep everyone up to date on my journey; and brings some inspiration also.

BRENT

New Scans - Both Heart and Lung

Today (Monday) I went into Carle Hospital for new scans. One was to measure the heart pumping capacity to calibrate dosage of a potential new chemo drug combination; the other to again reconfirm the location of nodules in my lungs to prepare for a biopsy. Both tests went as planned, but we had a follow-up visit with a physician's assistant afterwards in preparation for my lung biopsy on Friday. This visit turned out to be very hard on me emotionally; not because of the good advice given about the lung biopsy, but because she actually showed me the lung scans on the computer screen. I had not bothered to see these while at Sloan-Kettering in NYC, but seeing them for the first time again brought up all types of emotions; disappointment and fear mostly - even though it is what we already knew going in. These feelings have stayed with me all day, but Usha has helped me talk through it and gain perspective again. I have a long way to go in placing all into God's hands; and must work every day on this. I really hope and pray that as these blogs continue, you all can see a transformation in my outlook to peace and calm for whatever lies ahead; which will come through growth in faithfulness and reliance on Him.

Here is a list of prayer requests. Please pray for healing and increase in faithfulness:
1) For a successful biopsy on Friday, and wisdom for the doctors to understand the tumor type and develop a successful treatment plan which can stop and shrink my small tumors.
2) For my spiritual growth, and faith in God's plan for our lives and beyond.
3) For wisdom to balance acceptance and faith, while never losing hope.
4) For having energy both emotionally and physically to fight through the worst of times in the upcoming weeks.
5) For being able to open my mind and spirit to place everything into God's hands.

Thank you so much,
BRENT

Sunday May 20, 2007 - An Annointing Service

Sunday May 20th, 2007 - one of the best days of my life. Our church family (First Mennonite Church of Champaign-Urbana) held a special prayer session for myself and Usha (my wife) with anointing and laying of hands. It was very moving to feel all of the love and care from so many friends. It was also a blessing to have my oldest brother and wife for this service. He is pastor of Sunnyside Mennonote Curch in Elkhart, IN. Even though we have not had opportunity to regularly attend FMC while living in India, it is still home and the source of spiritual and emotional strength. This service was a special gift to know how much we are loved when part of God's family. I still have fears and concerns, but need to place all in God's hands and praise Him each and every day for gifts, large and small. Finding peace and strength comes through prayer and faithfulness. It is a great comfort to know there are so many dear friends for help and support during this journey.

BRENT

Brent's Blog - The Begining

Hello to everyone. I am starting this blog to make it easy for relatives and other friends to keep updated with my health situation; and for creating a forum for prayer requests. I also hope this provides me with a good outlet for creative writing to share my experiences as I go through this journey with cancer. I have always found writing to be therapeutic, more so now than ever before.

This is not really the beginning of my journey with cancer; in fact it has been almost 10 months since my diagnosis. But in many ways, this past week has felt like the beginning of realization that I have this disease. It all started back in late May, 2006, when I felt a large lump in my left hamstring. My family had been living in India for the past 11 years, doing agricultural research to develop improved seed varieties for farmers there. Since our children had gotten older, with more spare time I had been active in jogging distances and just assumed that my lump was a pulled muscle. But over the next 6 weeks it did not get better, and seemed to grow. By early August, it was obviously something concerning and my local doctor who advised to get an MRI in the largest close city (Bombay). The result was shocking; a 12cm x 6 cm tumor which encompassed my mid-left hamstring. We immediately went to Sloan-Kettering Cancer Center in NYC for surgery. The surgery was very successful (called "limb saving surgery" - which sounds great) due to the incredible skill of my surgeon. We were then surprised with the pathology report; a children's sarcoma type known as "Rhabdomyo sarcoma". In adults, this type of sarcoma is rare and rapid growing - but is known to respond to chemo and radiation treatments. So we started on a long course of chemotherapy in NYC. We moved the chemo and radiation treatments to my home town cancer center in Urbana, IL, so my wife and I could stay with my parents and be close to all my family. Our sons remained in India; one at an International School in North India and the other stayed with close friends at our home in India. Fortunately, my body handled the chemo / radiation treatments really well, and we even made 3 trips back and forth to India over these past 8 months. My first two chest scans (Sept. and Jan.) were clean, and everything looked great going into the final round of chemo in mid-May. But much to our shock, and disappointment, this last round of chemo was never to occur. We have now found that the cancer has spread into my lungs; in the form of many small nodules and one larger one (over 1 cm). What this means is that the chemo treatments we tried initially were not effective, but there was no way to know this because we had nothing to measure it against. This initial chemo treatment course used 3 drugs that were very old (30 years or more) but known to be effective in children.

So now for the new beginning part. I realize that up to now, I have not accepted having cancer. I only accepted having a tumor which was removed ... a really foolish attitude. Now I have to accept cancer all over again. It is like being told again for the first time. Shock, denial, sadness, fear, regret; not once but twice. We are now in process of getting a biopsy of the new growth, and then setting out on a new treatment options. On the positive side, I really like my doctor here at Carle Cancer Center in Urbana. He is positive and creative, keeping up on research. Carle also has a tie in with Mayo Clinic. Sloan-Kettering in NYC is one of the top cancer institutes in the world, but at this stage it is really difficult to go back and forth to NYC; so we would like to base out of Urbana and go up to Mayo if anything more is needed.

I got inspired to set up this blog, from another blog by Nathan Detweiler and his parents /friends (http://nathanstory.blogspot.com/). Nathan has the same scarcoma type, but it had spread into his lump node system; and in many ways was a more difficult case than mine. I was really inspired to read how his cancer had responded to chemo and how he fought through many obstacles to survive and graduate from Goshen College; including a stem cell transplant procedure. Just reading his experiences over a 2 year period gives hope that something may work out and we must never give up. Another aspect of Nathan's blog which has been especially moving, is how much his experience has brought him closer to God and taught him to rely on God for strength. His faith is inspiring; as is his ability to find joy even in the lowest moments. Following this example, it is time me to more earnestly seek God's guidance and use this experience to grow in faithfulness and trust in Him. I realize that once I achieve this, a calmness will come over me and I will be at peace.

I want to share scripture sent to me by a dear friend upon learning of my cancer recurrence:

PSALM 118 5 - 9 :
"God Answers Prayer"
In my distress I prayed for the Lord and he answered me and rescued me.
He is for me! How can I be afraid? What can mere man do to me?
The Lord is on my side, he will help me. Let those who hate me beware.
It is better to trust the Lord than to put confidence in men.
It is better to take refuge in him than in the mightiest king!

I hope to share my journey with you all, seek your prayers, and gain inspiration and spiritual insight along the way.

BRENT