mjb Posted April 25, 2011 Share Posted April 25, 2011 If I wrote a book, that would be the title - 7 Years and counting. I've been hanging around the boards since my husband was diagnosed though I don't post much. I feel like I need to share my husband's story to encourage others but I find it difficult to come here and write - like I'm opening up my soul and letting people in. Nonetheless, here is an abbreviated story of our journey with SCLC. In January of 2004, my husband got out of his truck and passed out on our front porch which is made of rough stone. Not a good place to take a fall! We put it down to low blood sugar, or possibly the flu coming on. The next morning he passed out again as we were having coffee at a coffee shop. This was the start of our journey, though we didn't know it yet. We had just gotten our youngest off to college and were starting to focus on building for retirement. The best laid plans o' mice and men . . . The diagnosis was delivered by a 68 year old doctor originally from Puerto Rico who immediately said "This is not a death sentence." We were very fortunate our first doctor said that because there were others along the way who didn't hold that view. You can look at my signature and see the treatments and tests we had so I won't go into great detail here. Through these treatment, tests, hospital stays and in between, we have dealt with side effects - dizziness, loss of appetite, falling down, seizures, confusion, memory loss and more. Thank God for our families and for the people who continually prayed for us. While I'm at it, let me thank Him for giving us a sense of humor - you wouldn't think that you could joke about having brain surgery but trust me, you can! Scott had two years of ongoing treatment, chemo, radiation, stereotactic brain surgery, regular brain surgery and guided navigator (robotics) brain surgery. The last one was especially scary because there was concern that he might come out of it partially paralyzed. Fortunately he didn't. Then we had four years of tests that were good and he gradually started regaining some of his strength. Though he was frustrated that he couldn't do the things he used to, this was the "new" normal. That's a phrase you hear a lot and at some point it sinks in and you find out what it really means. Then last year during a routine CT, hot spots showed up again. He was diagnosed with lymphoma and there was also a suspicious spot in the lung that they couldn't get to. They did chemo but the spot in the lung was still there. In September he underwent surgery for a biopsy, followed by partial lung removal when they discovered that he once again has SCLC. I almost lost him this time - and I learned how to give an IV. Once again he pulled through and is now on his second kind of chemo. Over the past 7 years, there were times when I felt that I was being carried by prayers and the universe. I am so very grateful for my family and friends. Few of them live here but they call, show up when needed and keep us in their thoughts and prayers. Certainly you discover just how short life is and how valuable every day is. You also discover just how much you can bear and how much you can do when you have no choice. It's not that I'm strong - I don't have a choice. But God does give me strength. The one who is strong is my husband. I look at what he has gone through and wonder how he has managed to do it. Our new doctor (the old one has retired) laughs at the jokes he makes and the things he says and I tell her she should be glad it's not me because I would be whining and crying. Here are some random things that I hope will be helpful to those newly diagnosed. I wish I had kept a journal (though I don't know when I would have had time). It is absolutely critical to keep a record of treatments and tests. Hospitals and clinics don't maintain that information and you will get hopelessly lost if you don't have it to refer to. It's okay to cry (trust me, I've been there on this one). Expect changes in yourself or your loved one. The treatments take a toll, some temporary and some permanent. But the basic person is the same one you have always loved or been. I would say that dealing with the medical profession and the constant waiting around teaches patience, but the truth is my husband was a very patient person before this happened and now - not so much. Do not let anyone convince you that you have x amount of time left. We had two different doctors indicate that it was hopeless. Thankfully Scott didn't believe it and chose to live. If you are a patient, get someone to advocate for you. If you are a family member, advocate for the patient. If at all possible, do not to leave your loved one alone at the hospital! Nurses will not take care of them like you do and may not realize when there's an emergency. The doctors can certainly provide guidance but it's ultimately your call on treatments. And if something doesn't feel right you need to let them know. And by the way, no question you have is stupid. There is very little support for lung cancer patients and families. Sad, but true. You can always come to lungevity.org for support, to ask questions, to rant and rave, whatever you need to do. It's like a safe house. Don't let people guilt you. Maybe you smoked, maybe you didn't. Maybe it contributed to your cancer and maybe it didn't. We all do things that are not good for our health. Some people live to 100 with bad habits while others do the right things and die young. We don't know what all causes cancer. Your focus needs to be on living day by day. You are going to hear comments but just consider the source. Patrick Swayze in his interview with Barbara Walters before his death said something like "my b***s***t meter is very sensitive." Facing the end of life as we know it affects how much time we want to waste on people who aren't contributing something positive. Faith and attitude are, in my opinion, the two most important factors in healing. It also helps to have good doctors:) Sometimes you have to just turn loose and trust the universe to take care of things. Try not to get overwhelmed. Yes, the bills still have to be paid, the lawn has to be mowed, the groceries bought, the washing done - all the things you were already doing and on top of that there has to be time for treatments and rest. I would wish that I could hug each person who is going through this as either a patient or a caregiver. I know how hard it is. A final comment before I close. When my husband was first diagnosed he said to me "Five years from now I will still be here and they will have new treatments". Half of that statement was right. But research for lung cancer is not a high priority and there are not many new treatments. "No one ever told me that grief felt so much like fear". C.S. Lewis Love to you all. Quote Link to comment Share on other sites More sharing options...
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