Michael Lewis

Amieb, I can't add much to what the others have said, but can tell you that a Stage IV diagnosis is not an immediate death sentence. I am one who has survived three years with a Stage IV diagnosis and they have been the happiest of my life. Lean on the group here for answers to your concerns, get second and third opinions on everything, find a good level of pain control for him and enjoy each day. Yes, there will be tears in abundance, but there will be people in abundance who will walk beside you and dad in prayer and support. Glad you are here. Michael

First, thanks to those who brought happy support after my previous Alimta post. Friday and Saturday went well, and I was actually thinking that maybe no side effects! Sunday changed that with very bad nausea, headache, vomiting. Until this morning, (Wed) have not been able to keep anything down. Finally changed nausea meds from Compazine to Lorazepam. Waves of nausea are mostly gone and my morning banana feels like it's gonna stay. Overall impression?...if it gets no worse than this, It was a good choice, and I can tolerate a few miserable days over the long haul. Michael

After more than three years waiting for the "other shoe to drop" I began chemo with Alimta yesterday. My cancer is growing, albeit slowly, and I'm experiencing pain which is pretty well controlled with morphine and vicodin. Since I was largely asymtomatic since being diagnosed in Jan, 2004, I'm grateful for the slow growth of the disease and the wonderful time with family and friends. In fact, to date, the worst troubles have come first from surgery in 2004 and chemo in 2005. Recovery from the surgery was/is a long process and I attribute troubles with Cisplatin/Gemcitabine chemo mostly to the massive steroids received. I have to say that I experienced some anticipatory nausea when entering the chemo floor for the first time in nearly three years, but the infusion went well and I returned home tired and very hungry. Today, I feel well and will resume normal activities. I have read many negative comments on side effects with this drug, but so far, am experiencing none. Now we wait for future test results and scans. I understand how the drug works, and look forward to good results. I do understand that it's a very expensive item, but Medicare does cover. Does anyone know what treatment with this drug actually costs? I will update if I experience side effects, but, so far, so good! Michael Lewis Seattle

Eric, Just wanted to say hello from another Seattle-ite. We are fortunate to have some fine doctors and facilities here. Your mom will receive the best care available anywhere. We also have a local support group specific to lung cancer patients, their families and caregivers. There is absolutely no cost for this and you can meet with other patients and caregivers on a one-to-one basis for questions and information. Email me if you are interested. The road you are about to travel is rough, but I'm glad you are here to receive information, care and fellowship. Your mom will be included in my prayers. Michael Lewis Seattle

Mike, Sorry to hear about your father. I would suggest that you contact your local hospice group. In the meantime, there is an excellent web site at: http://www.hospicenet.org/ There is lots of information there about hospice, but also end of life issues, symptoms and also information for caregivers. Hope it helps answer many of your questions. Michael Lewis Seattle

Leslie, Glad you are here. As far as your oncologist is concerned, asking for ten years more after a cancer diagnosis is like asking for a new BMW. It's a statistic over which he has no control. I don't mean to be harsh, but sometimes we ask questions which we don't really want answers to. Changing docs may or may not buy you more time. It's always, always important to seek another opinion. Like most, I asked the same question, then was embarrassed bargaining with him for additional time. Others may suggest that this is not the doc for you, but if you are looking for answers beyond the statistical curve, it's anyone's guess. And that does not take a medical degree. Having said that, I will share the experience of a young facilitator in my local lung cancer support group, a med student. She recently interviewed for a residency at City of Hope Cancer Center in Southern California. She was floored by the newest research there, which is being done at a cellular level on cancer DNA. They have devised a method to "break" the DNA chain, causing the cancer cells to die. Her description was that when two important links are broken, the cells literally commit suicide. It means that someday, 170,000 moms, dads, brothers and sisters, and, yes, children, per year, who suffer from lung cancer, will come home at night to their families. So, contrary to my former beliefs, there may actually be a cancer cure forthcoming. Meanwhile, I have enjoyed the last four years from original diagnosis and am looking forward to some more time. How much? I have no clue. The real question and constant challenge for me has become not, "..what could I do if I had another year?"...but "..how can I make TODAY more significant in the lives of my family, friends and self?". Best, Michael Lewis Seattle

Lori, Cancer is a disease unlike a cold, pneumonia or any of many others for which prompt treatment may save a life. In fact, often rushing to treatment may be detrimental. For me, rushing to surgery was probably a wrong decision. We fell into the "let's fix it quickly" trap. Had we looked at other options and talked carefully with other medical experts, it's likely that we would have had information about post-surgery chemotherapy, an option not offered by our provider at the time. I feel today, that adjuvant chemo may have saved my life. In retrospect, it was bad medicine practiced without full disclosure. Most here are not doctors, but we have the combined medical experience to rationally discuss cancer issues, having been there, either ourselves or as caregivers. Truth is, if your dad has advanced (StageIV) metastatic lung cancer, he will die from the disease or complications thereof. As his caregiver, I hope you would be with him in those last moments, knowing that he was able to do all the things he wished under your watch, including attending your wedding. Listen carefully to the advice you are given above. It's given in a spirit of love and compassion from kind people who have walked your path. As caregiver, you will make decisions from an aspect of what's good for dad. Sometimes, you must be the strong, even forceful caregiver who is not afraid to plant your feet in the ground and refuse to proceed with anything until all your questions, all your doubts have been answered and all your options have been explained to your complete satisfaction. That's not dad's job right now, it's yours. I feel I can be clear and concise about this, because it's the kind of care I would want. Bless you and dad, Michael Lewis Seattle

Dear Lori, You are the only one who can advocate for your father. It sounds as though the treatment you/he are receiving is not meeting your expectations. It's folks like you that this forum helps most. Read all you can and search the internet. Print or write down your questions and prepare for the next appointment. Locate a major cancer center in your area and don't leave until all your questions are answered. Please, PLEASE, get another opinion and do it soon! Your Dr's nurse deserves to be fired on the spot, and his callous response and rush to chemo with an obviously frail patient is at best, extremely questionable. You did not state exactly where you were receiving treatment, but there are many fine cancer centers in Illinois. Do not let your elderly father begin chemo, particularly first line chemo, without a second opinion and without having both your questions and his answered. He deserves better treatment and a physician and staff who will give you the time to answer all your questions and discuss the many alternatives for treatment. Chemo is brutal and will reduce even an otherwise healthy man to tears. Run...don't walk! I'm now a three year survivor and have been down this road. My original prognosis was 6 months to a year. That's why few physicians will even guess at a prognosis early in treatment/diagnosis. He has the potential to survive his remaining days in comfort and clarity. Please give him the opportunity to do so. All my best to you and dad. Michael Lewis Seattle

For those experiencing residual pain and stiffness at surgery scars, a physical therapy technique called Myofascial Tissue Release can help. I discovered this by accident after complaining to my wonderful PT about my scar. She rolled her eyes and said, "take off your shirt". She then performed a technique for releasing the "sticky" scar tissue along a portion of my scar. Later, she showed my wife how to perform and continue these manipulations. The results were excellent. She later commented that surgeons know about this, but sometimes fail to mention dealing with the tissue they leave following surgery. A word of caution...this is for well-healed tissue, not for those a few weeks or months post-op. Also works for scar tissue resulting from tube insertion. I do experience pain in the cartilage where my surgeon separated ribs. There is a definite lump there which is quite sensitive and shows up on scans but hasn't changed since a few months after surgery. I take medicine for diabetic edema which really helps. Hope this is helpful to some of you. As always, YMMV.. Michael

For all those newly (and not-so-newly) diagnosed, especially with a daunting prognosis, I just wanted to share that this month I entered the 24th month following a mets diagnosis. The original prog was 6mo to 1year. How little they know! I have not posted for some time, but the last two years have been wonderful, living life to its fullest. Setting and achieving short-term goals has been a big part of my survival. (at least I believe). Managed to walk my very special daughter down the aisle this summer, shortly after walking my bride of 39 years for a re-commitment of our vows. Made the second relay for life survivors walk at Husky Stadium and was filmed with several others for a TV special on Lung Cancer, broadcast here in Seattle. A big blessing has been working directly with several other lung cancer patients, sharing experience, strength and hope. Networking directly has given me a sense of connection and a happiness beyond description. I have never felt more in touch with myself, my humanity or others. Without the very mixed blessing of this disease, this would have never happened. What's next? don't know, but as the disease progresses, I hope to reach my 65th birthday in July, to hang a third survivors ribbon around my neck at the Relay for Life, celebrate my wife's birthday in April, maybe eat turkey come Thanksgiving and pass out the gifts, as is our tradition, at Christmas. Hey...Why Not! The grace of God has given me more time than I ever thought possible. The rest is absolute bonus time.. Bless you all.. Michael

Thanks for a wonderful topic. I have not posted here for some time, but I do drop in and scan messages. My fears & anxieties are pretty similar to others; leaving my wife of 39 years, not seeing my youngest ( 18 ) go to college, find a good job, get married, have children. There are financial concerns for my wife, but our other two kids are doing well and I know she will always be taken care of. I guess the one emotion this misses is anger. (Have been told that anger and fear are really the same emotion). I want to see my grandchildren when they are born, want to walk on the beach with my beloved (as we always planned). I want to be able to start projects and do some planning for the future. As an architect, I was paid for my vision, for planning the future of things unseen outside my mind. I do believe that I learned to live there in the future, rather than the present. Today, I have learned to live in the present, hard as it is, sometimes. Because I remain without symptoms other than tiredness and SOB, others take it for granted that I will live a long time. That's not a bad problem when you think about it, but how far ahead can I plan, with reasonable expectations of completing anything? I know that the cancer is lurking there and have no idea when/how it will come to hit me. I know I will die from this disease, but meanwhile, have the best of medical care, a fine doctor and a wonderful family. The way I am handling this today, is setting short term goals which, up to now, have been successful. We just returned from a ten day trip to California for a family reunion celebrating my MIL's 80th birthday. While in our home town, we renewed our wedding vows, a truly joyous event, with my young son as my best man. The ring he held for me will go on his hand when I pass. Our trip back to Washington was up the coast of California and Oregon, two of the most beautiful of God's creations. This coming Sunday, my daughter is being married and I will walk her down the aisle. So, the plate is pretty full, but I wonder, after these short term goals are past, what next...? Fortunately, I'm obsessive and will come up with some project or event to keep the "willies" away. I'm a recovering alcoholic with seventeen years of sobriety and also a diabetic. Not long ago, I was visiting with my oncology nurse and she commented, "Michael, the bad news is that you have three fatal diseases....The good news is that you can do something about two of the three." So, I do have some choices... Each morning I wake up and think, "I have cancer", but somehow I get another day, hour, minute, which I treasure and appreciate. Having cancer has made me a better father, a kinder man, an appreciative and loving husband and has allowed me to fearlessly open doors that needed opening and close doors which needed closing. I think that, had I prepared for the life after, sooner in my life before cancer it would have been an even more extraordinary life. A reasonable faith in a higher power seems to help many, be it God, or another of the many choices. In the fellowship of Alcoholics Anonymous, we are taught to choose a higher power, a God "of our understanding". I'm glad I chose who I did, because the God I choose to live with is absolutely who I die with. Michael ..for all those who suffer..there WILL be a cure...

Hi Missy, Glad you chose to "blow up" here! We all need a safe place where we can vent without fearing criticism. Glad you are here and caring for mom. Don't know if you have a pain center near you, but it might be a place to find some relief for her. No one should have to endure pain in today's age of miracle drugs. With prayer.. Michael

Hi Carleen, Your post touched me deeply. As we try to figure out how we fit in this new and unwanted relationship as "patient" and "caregiver", sometimes we simply feel lost. I have never fit the role of patient, even though I think most men love to be spoiled by their wives and girlfriends and I am no exception. My wonderful wife, Bobbie, has always been the family caretaker. Unfortunately, after 39 years of marriage, she is now a caregiver to a dying man. Not a role she wants or deserves. However, I'm not the only one who is sick here. It is very easy for me to play "victim" in all this. I have to say this very carefully, because I don't want you to think I'm accusing Keith. This disease has brought sickness and misery to every member of this family. I have to remember, on a daily basis, that I must also support my family members and friends who suffer also, to give them permission to ask that their needs be met, as well. For me, the fear has gone, and what I feel right now is a tremendous need to explore what is happening medically, to re-open doors which need to be open and to close doors which need to be closed. I need to give my wife and children the OK to be needy, too. I cannot expect comfort unless I give comfort to the best of my ability. Sometimes, Bobbie and I will be somewhere and just look in each other's eyes, then hold each other and cry. It is my responsibility to continue to give her kindness, love, and tender care. That' what I promised 39 years ago when we mutually recited..."till death do us part". That's a three-way mutual promise between mates and God. With my prayers.. Michael

Hi Youngnblessed, How sorry it is when young people become victims of this cursed disease. My daughter, who is two years older than you, was the hardest to tell when I was diagnosed stage IV. Suddenly your life seems to be in a shambles and all the future plans you have so happily made, seem to go out the window. This is not a death sentence. You will hear it again and again, here and from others. God gives us all a purpose in life, and we often don't get to choose that purpose. You are OK, and can be a light for your husband and others to see. Hold strong to your faith, and don't be afraid to ask many many questions. Ask until you completely understand, until you have viewed all the reports, xrays, CT's, MRI's and had them interpreted for you. Be his eyes and ears. He is fortunate to have you. I'm so sorry you are here, but you have found a place where you will be lifted up, encouraged and held in prayer. Michael

Mch, Welcome and good luck with the future appointments. As many have said, this is not a death sentence! Lots of survivors here to support that statement and to offer you support. Best part is reading the GOOD news when someone has a remission and can share that with the board. You are in my prayers.. Michael