Saturday, June 27, 2009

Saturday is a special day, it's the day we get ready.....

The weekend is here. The long planned for garage sale at Charleen's is over for me. It started at 6 a.m. er, sorry 6:15 I was late, this morning. There was a lot of traffic starting about 7 a.m., I should have counted but anyway it was steady all morning. Then about 1 p.m. it got totally dead and I was tired and my face hurt so I called Al to come and get me in the truck. I didn't have much stuff in the first place, but I did sell a few things. Ok, so I only made $23.50, so who's counting.

Then Al and I went for some lunch over to Kneaders. As we were walking in the door, I saw a man standing by his car, smoking. Oh no--I could feel it coming on. The Urge! The Urge to accost a stranger (or even a group of strangers) to tell them to stop smoking. I tried to stop myself but found within 2 seconds I was standing in front of him, telling him I don't normally accost people in the parking lot, and to please excuse me. I told him I have been diagnosed with lung cancer, and I never smoked. I told him he is 10 times more likely to get it than me, and since he is a smoker, it will likely be a worse cancer. I said please don't smoke, it is horrible having lung cancer.

Please someone stop me before I hurt myself!!!!

But seriously I hope any of you within the sight of this blog will accost everyone you know and anyone you see smoking and warn them about the dangers of carcinogens in cigarettes. Especially anyone you see around children. In my opinion, that is just child abuse. You say you love your wife and children, yet you smoke? You absolutely do not love them. You love yourself and that is all. Someday the piper must be paid, and if it isn't you with a big ol' honkin' tumor in your chest, it could be your precious child. Can you live with that?

Wednesday, June 24, 2009

The History of Acne

Basically, I have had acne all my life. I mean that. I had really bad blotchy skin through my teenage years and early twenties. I used to pray that the acne would go away. It was the bane of my existence. Then in my late twenties and early thirties, something in the hormones of having kids must have changed in my body after that, because then it lessened and wasn't quite so bad. I still would have breakouts periodically but it was so much better than before I wasn't bothered by it so much.
Now if you can believe it, I have acne again, and I'm happy about it. What????? Yes I'm actually wearing it like a badge of honor. The reason for this schadenfreude is the new cancer drug I started taking on June 15 called Tarceva. This drug has not been around very long, I think it just got FDA approval in 2005. It is used in lung cancer and pancreatic cancer patients and has been very successful in many cases in stopping the cancer from growing for a period of time, and in other cases to shrink it even more. Since it hasn't been around very long, there are not a lot of statistics on it, but many patients are having great success in no progression for years. Long story short, the best indicator that my cancer cells are affected by this targeted drug is the rash. If I had not developed the rash it could mean the cells didn't have the receptors the drug hones in on and causes interruption of cell growth.
Dr. Litton thinks that because of my fabulous response to chemo, I will also have a good response to Tarceva. I saw him today for a check on my status, and he was pleased with the rash. He gave me an order for a chest x-ray and I made an appointment for another followup with him on July 15.
He says the rash will probably continue, so I will still use the Clindamycin gel and Minocycline antibiotic. If the rash gets worse by next week, he has prescribed a steroid called Medrol.

Sunday, June 21, 2009

Utterances of Comfort

I've written the basic chronology of the beginning of our cancer journey. I say our because my husband Allen has been traveling this road too. It has been very difficult for him but he has stepped up as needed to help both with day to day tasks and with spiritual comfort. Our families are involved too and they have been there whenever we have needed them. I don't know how people who don't have family can get through something like this, so I am thankful for each and every one of them.

What I haven't written about yet are the circumstances of this event from a spiritual standpoint. I am hesitant to write about spiritual events in a forum like this, for fear that my inability to convey the true spirit might fall on deaf ears or seem unbelievable to the skeptic. I have been thinking about this for a few days and have decided that while this story is my own and I can choose to keep it to myself or share it with all, I would be a very ungrateful servant of our Savior if I did not tell all who read this and let them make their own decisions about what it means.

Allen had the opportunity over 30 years ago to meet a wonderful man who became his spiritual mentor and a second father. This man was his mission president in the Minnesota Minneapolis Mission, Douglas Callister. I'll keep it short in this post but let it suffice to say that I believe that mission calls are inspired and Allen's call to serve under President Callister was life-changing and life-saving for Allen. In the ensuing years, Allen has strived to keep tabs on the president, whether he was in Southern California, countries of the former Soviet Union, or Bountiful, Utah. So when the diagnosis came for me, it was only natural that Allen would call the president, especially since he has been a general authority located in the Church Administration building for the last 7 or so years. Allen expressed his sorrow and fears to the president like he would have to his own father, and knew he would receive comfort there.

President Callister immediately reached out to Allen like a father would to his son, and offered to give a priesthood blessing. This was arranged to happen within only a couple of days of the call, and was set for March 17. We invited everyone to come who could get away on short notice, my brothers, sister-in-law Ellen, my mother, our bishop and our son-in-law. He had made sure his calendar was clear to take plenty of time for us, and he sat and counseled with us in a conference room near his offices. He is very knowledgeable about the subject of cancer; he has a son Matthew who is a radiation oncologist at the Mayo Clinic in Arizona and told a story of a man who came to him with a cancer that was seemingly incurable, but Dr. Callister persisted and came up with a regimen that put his cancer in remission. He also related the story of a friend of his in California who has lung cancer but still functions in church service and with patients, even though he is past retirement age. My impression at that time was that this man believes in the miracles of modern medicine, and that scientists and doctors are inspired to find cures and treatments for all kinds of ailments. I found myself peaceful and calm as he counseled all of us to be of good cheer. In fact he said that our Heavenly Father looks dimly on those who are constantly in despair when faced with sickness that can end our mortal lives. He said such despair demonstrates a lack of faith in the Atonement of Jesus Christ.

When the time came to receive the priesthood blessing that was the reason for our visit, I asked our Bishop Dave Platt to do the anointing and President to seal the anointing. Bishop Platt applied the consecrated oil to my head. All the priesthood holders gathered around me as I was seated, while they stood in a circle while putting their hands atop my head.

Even before he started to speak, I felt a warmth begin to course from the top of my head and slowly move downward. To begin, his exact words were: "Sister Joyce Annette Bennion Luker, by the power of the holy priesthood, and in the name of the Master--" At this point the warmth had reached my chest. Then suddenly it was no longer just warmth, the sensation was heat. It enveloped my whole chest, both right and left sides. It lingered there as he spoke. It was a sensation that burned but was not painful. At that moment, I felt the presence of that Master of whom he spoke in the room. I knew to my core that my Heavenly Father and my elder brother were aware of me at that moment. My spirit told me that my Father had created this body that I inhabit for this earthly journey, and that he was fully aware of the cancer that was in my chest, he knew full well where the problem was, therefore the burning was a communication between just me and him. I also felt that my brother, my Savior, knew only too well the suffering I was going through and would continue to experience in the future. He understands suffering and pain to an extent I will never fully comprehend. All these things were communicated to me within seconds as the blessing continued, and the heat left my chest, returned to a gentle but perceptible warmth, and continued through my body and exited through my feet.

Before the blessing started, I was slightly panicky because I was afraid I would not remember the words that were spoken. I knew that if I could just remember everything he said, it would give me great comfort. In fact, Allen and I had talked about taking a recorder but ended up not doing so, and in that moment I regretted that decision.

However, I did remember 2 important points he included, and as I reconstructed these words later, I realized that while someone else might remember other words, these were the 2 things that were most crucial for me to remember. First he said that this illness would not have the power to shorten my life. He said I will live the entire length of time that my Heavenly Father and I agreed upon before I left his presence. Second he said that my Father in Heaven will direct the doctors in my care and all details of the medications that will be chosen for my therapy. He will be involved in every decision made by the doctors and nurses who care for me.

This post is long but I hope those who read it can feel of my sincerety in posting it here. I don't do it lightly. I am a believer, in fact I would say that "I know that I know" that God lives, He loves us, and He has given us His holy priesthood, which is His power to act in His name, and that if we honestly and truthfully seek Him, we will find him.

I don't know how long I will stay on this earth, but I do know when the time comes for me to go to my heavenly home, it will be when my agreed-upon hour arrives. As I said in an earlier post, when we first got the big diagnosis, we thought my death was imminent, probably within 2 months. Now here I am, nearly 6 months later. Each extra day seems like a gift to me.

Sunday, June 14, 2009

Megann is home for a visit!

Megann's wonderful roommate Jessica from freshman year at BYU got married this weekend at the Draper Temple. So Megs had to be there, she wouldn't miss it. She came all the way from Nashville after having just moved there on May 27. I picked her up at about 8:30 a.m. on Friday morning at the airport. I dropped her off at home so she could catch up on some sleep.

Right after that, I headed to an appointment with my family doctor, Dr. Levine. This was a followup for high blood pressure, which has risen steadily for the past few months. One day while I was at the Cancer Center for a check of my blood counts, my BP was 177 over 101. The MA wouldn't let me leave without making an appointment with my PCP, which I was able to do, and so I saw Dr. Levine later that same day. We had a good laugh over this--the Cancer Center can pump poison into my veins, but they can't mess with a little high blood pressure. Ha ha! She started me on a prescription of Bystolic, 10mg, and had me take half of that per day. I was to report back to her a month later. But when I tried to get an appointment with her a few weeks later, she was on vacation and then was moving to a new building so she was out of touch for another week after that. Then in the meantime, I saw Dr. Litton at the Cancer Center and asked him about the BP and if the chemo could be causing it. He indicated that the biological drug Avastin, because of the way it works affects the kidneys, which can cause BP to rise. So rather than see Dr. Levine right away, I decided to wait a few weeks longer til I was finished with the last round of chemo and see if my BP dropped.

So anyway I fnally reported to Dr. Levine and sure enough the BP has dropped, 120 over 90. Very good, says my daughter the nurse (she loves it when I say that). I had a great talk with Dr. Levine about the cancer journey, and I took copies of my scans to show her because they are such a big picture on the computer, it takes forever to get them to load. Seriously, it is like having pictures of a new baby, I have to show them to everyone. Dr. Levine says sometimes miracles do happen, she has seen them. She believes in them. So we are together in this battle, she is helping me to achieve maximum health so I can go on to fight the cancer. I am going to do a test overnight for oxygen levels, and determine if I might have sleep apnea, which could cause the elevated BP. We talked about appreciating life and how fragile it can sometimes be. But all in all, she feels really good about my chances and that I will still live a long time. I told her when I was first diagnosed, I thought I only had about 2 months, and here it is already 6 months down the road, so I have already outlived my first expectations. She said that for as advanced as my cancer was, she never thought I looked like I was sick. She said she was really thrown off by that.

Today is Sunday, and I brought Megann back home to get her stuff all packed up to fly back home. We will be taking her out to the airport. She didn't bring any checked baggage with her, but she is taking back her piano bench, which they accidentally left here. Allen took the legs off the bench and boxed it all up for her so she will have to check it and pay for it, but it is cheaper than sending it through the mail.

Saturday, June 13, 2009

Who, Me?

February 10, 2009
I started having problems with shortness of breath in January of 2009. I was putting all the Christmas paraphenalia away down in the storage area of our basement, then when I would come back upstairs (like I have done about 20 million times in the last 28 years) I could hardly catch my breath. I knew this was not normal. I thought maybe I had asthma or a cold. Then I started to realize that I could no longer get air in my lungs while lying down to sleep. I started to prop up my pillows and attempted to sleep sitting up at a 90 degree angle. After 2 weeks, I went to see my PCP, Dr. Levine. She did an EKG, she thought maybe I had had a heart attack. No, the report was my heart was "fabulous." Then she sent me next door to have a chest x-ray done. I brought it back to her office shortly thereafter, and she showed me a huge shadow in my right lung. What the heck was it? I never thought once of cancer. How can non-smokers get lung cancer? I thought I was safe.
February 12, 2009
Dr. Levine's nurse Chris called a couple of days later to have me call the hospital to set up a CT scan. I couldn't get in until February 20.
February 20, 2009
First CT scan. Not a horrible experience but not what you would choose to do either. By this time I knew things were pretty serious. After the results came back, Dr. Levine called me at home. She said they couldn't tell for sure but worst case it is cancer, best case, an infection. She had set up an appointment with a pulmonologist, who shall remain nameless for reasons you will read about later on.
February 27, 2009
Met with pulmonologist. He reviewed the CT scan with me, never indicating anything but cancer. We scheduled a bronchoscopy that he would perform on March 3 at Intermountain Medical Center.
March 3, 2009
Reported to IMC for bronchoscopy. How fortunate for us that the nurse was Erin Walker, from our ward. It was so much easier to have a familiar face there to explain and comfort us as we started this journey. I seem to remember waking up during the bronchoscopy, I could not stop coughing and felt unable to get my breath. Later on in the recovery area, the doctor came in and showed us pictures taken during the procedure. It showed my right bronchial tubes nearly blocked. He said, it is what we thought-cancer. I called my mother to meet us at the house, and cried all the way home.
March 6, 2009
We went to the pulmonologists office to get the results of the bronchoscopy. He seemed very disconcerted and told us that somehow the bronchoscopy results were messed up--it happened somehow in the process of staining and identifying the cells taken in the needle biopsy. So the bronchoscopy has to be redone. Set up an appointment for the next Monday at 7 a.m.
March 9, 2009
Bronchoscopy #2. Equally as unpleasant, if not more so.
March 10, 2009
Scheduled PET scan. Another weird experience. Again, I am thinking through the whole thing, is this really happening to me?
March 11, 2009
I never heard anything from the doctor until 7 p.m. Finally he called, but I wished he hadn't. He just bluntly said the evaluations show it is non-small cell lung cancer, and it has spread to your neck, stomach, and liver. I can tell you we didn't get any sleep that night. We cried all the rest of the evening, and started talking about how to prepare for my imminent death.
March 12, 2009
Today we met the oncologist, Dr. Gregory Litton of Utah Cancer Specialists at the Cancer Center at IMC. He spent an hour and a half with us, diagramming the whole situation and explaining everything 3 times. The cancer is non-small cell adenocarcinoma, Stage IV. The original site was in the lower right lobe, then it spread to the lymph nodes in my chest. That area was what had increased in size and then blocked the bronchus. Then it had spread to other lymph nodes in my neck, stomach and near the liver. He explained that the cancer is not "in" my neck, stomach, nor liver, it is in the lymph nodes near them. We really liked him from this first appointment, and for the first time, I felt hope for my future.
March 20, 2009
Started chemotherapy today. I am receiving Carboplatin and Alimta, plus a biological drug called Avastin. Again, my infusion nurse was someone from our ward that we have known for many years, Ann Calder. I have been fortunate to be the recipient of many tender mercies, and I count Ann and Erin as 2 of those. They both have such a calming, competent demeanor that settles one down and says everything will be all right. The treatment went fairly easily. I can't say it was awful. I was very sleepless the first night though, had nightmares and bit the inside of my mouth. That was sooo sore for days. I felt a really strange popping sensation in my chest all night. I had nausea on Monday and Tuesday, but taking the Compazine made it go away quickly. I was late for work both of those days, but I made it through each day with a lot of understanding from my coworkers. About the 1st of April, my hair starts to come out. Especially in the drain after I shower. Poor Allen, he is very upset about this. I am more philosophical--I am reassured that it will grow back, and in the scheme of things, I don't really care. Hair is no longer that important to me.
April 10, 2009
Treatment #2. Went much easier this time. I am getting used to it. My blood counts are excellent. Many thanks to my Father in Heaven, his gift to me of this healthy body is helping me to fight these out-of-control cells. It is getting easier to breathe. I can now sleep on my back, or on either side with no problem breathing.
May 1, 2009
Treatment #3. More of the same. It is getting a little easier. I am walking each day and trying to keep up my stamina. Blood counts are still wonderful.
May 22, 2009
Treatment #4. Old hat now. I don't know if this will be my last treatment or not. In the infusion area, there is a special bell mounted on the wall that all those who finish treatment ring as they are leaving, and everyone claps. Even though I don't know if I will be back, the nurse had me ring the bell. Everyone cheered!
May 26, 2009
Went to IMC for CT scan and PET scan. I am very apprehensive. Will I find out that the cancer has spread some more? Do I dare hope that the way I feel so much better is the best indicator that the chemo has worked?
June 1, 2009
Met with Dr. Litton. He showed Allen and I the scans. The cancer that was filling my right lung had partially collapsed the lung, but the lung has now reinflated itself. The big original tumor site has disappeared-what is left appears to be scar tissue. The lymph nodes in the chest have shrunk to normal size and are no longer blocking the bronchus. Dr. Litton gave us copies of the scans and reports. We carry them around for days, showing them off like a new baby. No more chemo--we will save that for later if the cancer starts growing back. I will start a new biological drug called Tarceva on June 15. It is called an EGFR, an epidermal growth factor receptor.
P.S. I have lost about 25% of my hair.