bengel

Jen, I had 15 days of PCI after chemo, lung radiation and a right middle lobectomy. My oncologist and radiology oncologist were in total agreement. The brain is a "sanctuary" for cancer cells and there was no question according to them that I should have it done. I had similar side affects as twodogs, but my hair goes in every direction, some are curly and some are straight, so I just keep it short as in my picture. That's the way I wore it when I was playing ball and before I married my college sweetheart. Of coarse I had to change alot of other things after I got married and am still learning after 38 years. Twodogs: I whistled real loud as we drove past your place driving to and from Rapid City on I-90 when we visited our kids in Gillette. Jen, I have excellent doctors so our agreement from the very first dx was that I was willing to go to the wall to conquer this beast. After 3 years of being "clean" I'm glad I did. Bud

Hi Aims, Allow me to add to my previous post that there is hope in the Lord and prayer has done marvelous things. This evening during our prayer time my wife and I will pray for your husbands courage to face what lies ahead. Our Grace Group will also add him to our list needs. Bud

Hi Aims, WOW!!! A month and nothing has been done? I agree with many of the other opinions but one month is already to long to wonder about what is going on. Get a second and third opinion. Travel if you have to, but don't wait. With cancer everything is TRUE or FALSE. There are no multiple choice questions or mutiple choice answers. Tell your husband that as an former high school coach I say if he wants to stay in the game he has to quit whining and grow up about the facts of life. I did not choose to get lung cancer but it is now an assignment in life that I deal with every day. I want to stay in the game. The other choice only brings sadness and hardship on the family. Also, please take good notes at his appointments. Your specific information will be valuable for help when you post next time. Now go do the right thing. Bud

My Chemo/Radiation treatments were six sessions of carboplatin/vp16 and 35 days of radiation at the same time. I then had a right middle lobectomy with 15 days of PCI after the surgery. I have been "clean" for 3 years. I hope this helps with your decision. Bud

My journey into the world of lung cancer started with a trip to the emergency room at 2 a.m. on July 9, 2001. It was the night of our 35th wedding anniversary. I had been working on a major remodeling project on our house since the start of summer vacation from teaching high school architectural and mechanical drawing. I had been on a jack hammer for five days removing the existing concrete porch and exterior bricks and siding. I had moved 15 yards of rubble and material into a construction dumpster on Saturday so Sunday was my day of rest and worship and a special day with my wife. My heart was pounding, my left arm had shooting pains and I could tell my blood pressure was high. I have been taking blood pressure medication since high school because of a family history of high blood pressure. Annual physicals always verified this so the multiple symptoms prompted me to wake my wife. I was beyond using biofeedback to settle my heart rate down so we decided to go to the emergency room. The nurses immediately hooked me up to the EKG machine. My blood pressure was at stroke level. The ER doctor was called in and immediately recognized me. He was a former student from 15 years earlier. Needless to say I felt very comfortable about the thoroughness of my care. The nurses had children who had attended high school where I taught and were giving me a lot of TLC. After the doctor got my blood pressure down and admonished me for working too hard he said “we’ll take a chest x-ray to finish and then you can go home and rest.” Three days later my primary care doctor called to say he wanted to see me in his office. I thought he was going to check my blood pressure and tell me to slow down but instead said the x-ray showed a spot on my right lung. He could not account for it from any of my previous exams. He was very surprised because I had been his patient for twenty years, a non-smoker, and never exhibited any lung related symptoms. I always had TB tests taken in the arm and were always negative. He scheduled more x-rays. They continued to show the spot so he referred me to a pulminologist. He confirmed it was probably cancer and scheduled a CT and bone scan. My wife and I flew to Billings, Montana for a wedding in Red Lodge the week before my scans were scheduled. We then drove to Gillette, Wyoming to see the house our son and family had bought. On 9-11, 2001 we left Gillette to drive back to Billings. On I-90 between Gillette and Buffalo we heard the news about the Twin Towers being hit by the aircraft. When we arrived at the Billings Airport all the flights were cancelled. How were we going to get home so I could get to the hospital Friday afternoon to get the stuff you have to drink before a CT scan? There was one rental car left that would allow us to drop the car off at the Oakland, California airport. It would take us two days to get home so we rented the car and left immediately. Needless to say there was a lot of anxiety on the way home. Because of all the anxiety I knew I needed help from the Lord with the upcoming events. I searched the scriptures for wisdom and found Romans 5: 3-5 to be a comfort. “... we rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.” I already have the Hope of Glory in my heart so I looked at my situation as a character building assignment. At each event with the medical profession I asked the Lord to teach me something new or to be a blessing to those who were in charge of my care. So when I had my bronchoscopy the pulmonary tech taught me what those real long q-tips are for. The doctor confirmed the 2 cm tumor had cancer cells but they looked unusual. I was referred to a highly respected oncologist who became a friend as we progressed through pet scans and second opinions at UCSF Medical Center, developing a plan of attack, and referrals to other specialists. We learned I had “an atypical carcinoma tumor considered in the differential diagnosis, however the tumor cell nuclei are hyperchromatic with finely granular chromatin characteristic of small cell carcinoma, rather than having the coarse clumped chromatin seen in atypical carcinoid. In addition, there are other features more typical of small cell carcinoma, such as nuclear molding, scanty cytoplasm, and the smeared basophilic DNA around the blood vessels. Also, there is probable mitoses and apoptic figures arguing for a diagnosis of small cell carcinoma. Two other pathologists reviewed this case and concur.” My case was staged IA. My oncologist was very straight forward and learned I don’t like whining and indecision either so our discussions were always frank and to the point with a little humor thrown in. When he asked me if I was willing to go the distance, I agreed. The plan was to have 6 sessions of Carboplaton and VP 16, 35 sessions of radiation to my right lung to shrink the tumor, which it did, and then surgery to remove the middle lobe of my right lung. I told the thoracic surgeon before surgery good mechanics give you your used parts back but he said he could only give me pictures, which he did. After surgery the plan called for 15 sessions of brain radiation. The radiation techs, who gave me the lung radiation, were so nice they agreed to come in 15 minutes early each day so I could get the radiation done before my first period class. I lost my hair for the second time. I was declared “clean” and now see my oncologist every six months. When I told my oncologist that I wrote to this website about my PCI experience and that the brain was a “cess pool for cancer cells” he chuckled and said, ”No, no, no, that’s a construction term, the medical term is sanctuary.” I have added a gastroenterologist and urologist to my list who have made sure my colon and prostate are clean and working properly. My cardiac specialist continues to see me once a year. During this journey my wife has been an anchor of support. I have met many new friends who “care.” I have learned doctors are human, don’t always have the answers we want, or information we think they should have at their fingertips. I have learned anger is not a healer. In retirement I continue to be the press box announcer at our high school, work on plans for remodeling projects, build things for the grandkids and play my tuba in the community band. By the way, the country porch remodel turned out better than expected. It took longer than planned because of this little interruption but was recently written up in the home and garden section of our local paper.

Today is the 3rd anniversary of my small cell lung cancer diagnosis. It is also the 38th wedding anniversary to my college sweetheart and helpmate. Both events have had a profound effect on my life. I have been inspired by others at this website to write my story about my cancer journey. I posted it in the My Story section. My journey has followed a textbook roadmap with nothing more unusual regarding side effects than what others have posted. There are many subplots but I felt it would make my story too lengthy to keep the reader interested. But one that I have a lot of fun telling is when I was loosing my hair after the third chemo treatment. I walked over to the desk of a student who I had known since childhood. I looked him straight in the eye with all seriousness and said “if you don’t get your floor plan design finished by Friday I’m going to just pull my hair out.” I then reached up, grabbed a handful of hair and pulled. I opened my hand. He was shocked and the other students sat in stunned silence. I laughed, told them about chemo with this teachable moment and said I would be bald tomorrow. That night I got in the shower and rubbed off the rest of my hair. The next day everyone was saying I looked so cool and looked like Telly Savalas. Walking through the quad became a real trip for the students. I am sending thank you cards to all my doctors as each date of significance approaches. I am so thankful for their care. Yesterday I attended the memorial service at our church for a friend who died of lung cancer. He was a highly educated man but didn’t listen to his own body as symptoms began to mount. By the time he had an exam he was Stage IV. We need to be proactive with this disease. Thank you for your inspiration and information. Bud

Hi Twodogs, Welcome to our group. You will find a very supportive and helpful group here. Where in Wyoming do you live? The avatar picture was taken outside our kids house in Gillette, Wy. when our new grandaughter was born. Bud

Suzie Q, I agree. I'm glad breast cancer gets the attention it does but lung cancer needs the exposure too. Some people have actually said things like "What's your problem, Why did you get lung cancer". Even health issues have a perceived ranking. Blessings to you and your mother. Bud

Hi Larry, I concur with all of the above posts. Lot's of good advice and support is at this site. I had forgotten about some of the side effects because I was still teaching high school while I went through chemo and radiation. I guess I was so busy with students that I didn't have time to think about what side effect I might be experiencing. My routine was that every 3 weeks I would take sick days on Wed., Thurs, and Friday for the chemo and then the next Mon. and Tuesday to get better. One Friday we had a home football game. I am the pressbox announcer and "The Voice of the Don's" for Amador Valley H.S. football. I had finished the chemo at about 4:30 pm. and went to school for the game. After the game the athletic director came up to the pressbox and said, "Bud, you seem a little slow tonight and your voice is not as strong as it usually is". I explained why and he apologized . He was not aware that this was the week for my chemo. He became a strong support person for me and would always check on me to see how things were going. I hope the medical team you have is as good as mine. My primary care doctor got the oncologist on board as soon as the pulminoligist made the diagnosis from the biopsy. The plan of attack was made by the oncologist and I met with the radiology oncologist and thorasic surgeon as soon as the UCSF Medical Center doctors gave a second opinion. My oncologist insisted on a second opinion. Maybe that's why he is one of the best in the SF Bay area. Make sure your wife takes her nausea meds and drinks lots of water or juices to stay hydrated. Some foods will taste different and some foods you will not be able to be eaten again until months after the chemo. Our prayers are with you and your wife as you travel this new journey. Bud

Becky, Was it sex before, during, or after chemo that is the lead story. Bud

Hi Addie, I'm glad to hear such a positive tone to your post. I have found that a positive attitude and good relationship with your doctors is the best way to stay on top of all your assignments as I call them (retired high school drafting teacher of 37 years). I remember when I was scheduled to have my first ct exam. I had to drink that yucky stuff the night before and then another bottle the morning of the exam. I did as assigned but when I got to the hosptal the tech said if you want to do your bone scan after the ct scan he would check with the bone scan tech. The bone scan tech said sure but you have to drink a quart of water for me. It was as hard to drink the water as the yucky stuff. We both laughed because I was so full after laying on the bone scan table for an hour that the next place I had to go was the bathroom. Praying for positive information on your journey. Bud

Hi Rileys Mom, Welcome. I'm glad you found this site because there is no better place to find encouragement and information. You are fortunate that the doctor found the tumor when you are at Stage 1B. When I was diagnosed I knew I needed more strength than I had. I found Romans 5:3-5 to be a real comfort. There are also some practical things that you can do and other survivors on this site can add more. 1. Thank the Lord that the doctors found it so early. 2. Get a second opinion. 3. Establish a good relationship with your doctors. 4. Get as much information as you can, but don't allow yourself to be overwhelmed. Take it in in small pieces. 5. From my experience life's questions are now true or false, very rarely multiple choice. 6. You have a little one to take care of which will help take your mind off your situation. 7. Your positive attitude helps the healing process. 8. Don't dwell on the what if's. The scans and x-rays show you are clean, so you are clean! Be glad and spend time with your family. 9. Right down questions to ask your doctor. 10. Surround yourself with friends and family that can help you, not bother you with a million questions about how you are feeling. Our daughter your age gave birth last week to a beautiful baby girl. I plan to see her grow up along with all of our other grandchildren. Blessings to you Bud

Hi All, I had a 6th month check-up today. Doctor reports all clear. Blood work was normal. I told him about the survey on PCI. He said the pendulum swings back and forth on the subject. My particular situation warranted it because of my small cell cancer and the brain is a sanctuary for cancer cells. He got a big chuckle out of my desciption because I had been using the word cesspool. He laughed again and said "cesspool is not a medical term, you should say sanctuary". The office staff and nurses are always so nice so I took them some red roses from my garden. They also always want to see pictures of my grand kids. I told them we have two more on the way by June. Needless to say, it was a good visit at the oncologist's office. Bud

When I went through my treatment sequence my oncologist laid out the plan in a very forthright manner and said if we are going to beat this thing then this is what we are going to do. The end treatment was PCI. I had no doughts that he was doing the best for me. I stopped by the hospital every morning for 15 days. The techs were kind enough to come in 15 minutes early so I could still get to school to teach my first period drafting class. The office staff was also helpful since I had been there for my lung radiation. I am very grateful for their support. Bud

Hi JamieC777 I'm glad you found this site. It has many wonderful people that can answer you questions and give you prayer and support. We have all been in your position and understand the anguish that you are going through. Take one day at a time and try to not worry about the unknown. Ask lots of questions and establish a friendly relationship with the doctors and staff. They are now a part of your life just like family. Keep a positive attitude about all the information that will come your way. Warmest regards, Bud