SCLC - 7 years and counting

[mjb]

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.

[RandyW]

Thanks You for Sharing! And Write the book Love the title!!!

Sorry to hear about your old doctor retiring. was he the one from Puerto Rico?? He sounded like a great doctor!!

Love all the little notes and thoughts ant End of this post!

[laban]

Thank you for sharing those words with us. I can relate to much of what you said and wish I could put things on paper like you. You and your husband are very brave people. I know it's a long and difficult battle at times and that trusting in God is sometimes our only relief.

Looking forward to the "14 years and counting" story too.

God bless you both

[jaminkw]

Don't have a lot of stamina to sit at the computer for long these days but I read your post all the way through. Your husband is an inspirational story I need right now. I'm not newly dx'd but more than 3 1/2 yrs into my journey and for the first time am getting really scared I'm not the amazon woman I thought I was. But I do have some characteristics in common with your husband--optimism, determination and sense of humor. Your post reminded me of that and how important they are in this struggle.

Thank you, I needed that. Best of luck to your husband in his continuing fight.

Judy in KW

[Bud Baker]

Congrats, MJB, great attitude and great information in your post!

You are so right about keeping track of what has been done. The lack of communication between medical institutions and medical professionals is one of the biggest flaws in our health care system, I think. I learned it all too well during my wife's breast cancer treatment.

My lung cancer treatment came from the VA, and that isn't a problem with them. Every single medical visit, right down to notes from the medical professional it was with, are kept on their computer system, and every medical professional you visit has instant access to it.

I remember a CT scan I was having in June, 2008. I had had a preliminary hospitalization in November, 2007, lobectomy in December, and chemo from February to April, including a stay in the emergency room after a bad reaction to Taxotere.

As I walked down the hall toward the scan room with the CT tech, he turned and said to me, "You've been through a LOT these last few months!" It occurred to me that it's a good thing when the medical professional you're seeing knows that, as well as knowing what all of it was for.

[Joppette]

This was written beautifully, and eloquently. What a wonderful, but difficult story to write. Thank you for taking the time to do it, as it lends hope to those of us with the disease, and incredible advice for the caregiver too.

This was an important post.

Thank you.

Judy in MI

[mjb]

Thank you all for the kind words. So many people dealing with so many different kinds of cancer - it's almost overwhelming and I am in constant awe of how well you handle it. But one thing I have learned absolutely is that people can overcome incredible odds. Hugs and kisses:)

[dianew]

I too want to thank you for posting your story. While I am the patient, not the caregiver, your story is an inspiration and gives much hope.

Diane

[clifsdy]

My daughter told me to look at this web site. I have just been told I have lung cancer. I start chemo wed 5/11/2011. I'm scared. My girls and husband have been great. My frist dr told me I had 1 maybe2 yrs. eading your story helps me I agree there is not much support for this. I have been thru breast cancer clean 10 years. Now this. I do blame myself I smoked and knew I should quit. Now I have this and quit. my girls and husband are my biggest support friends have come thru too.

I havve 3 new granddaughter born last year and want to be around for them.

keep talking to me I'm scared and hate putting everything on my family.

thank you again. sharon

[dianew]

Sharon - welcome to the site that none of us really want to belong to. I am not a moderator, or I would move your post to insure most of the others will see it and welcome you, but I know they will find you anyway.

Please don't listen to anyone who tries to tell you how long you may have . . . they don't know and they are usually soooo wrong.

You don't say what type of LC you have or what kind of chemo they will be giving you, but there are almost certainly many members who have had the same chemo and can be very helpful when it comes to handling side effects, etc. As for the smoking, don't waste your energy feeling guilty. I smoked also, and I understand the feeling, but I started when I was 13 and had no idea the tobacco companies were artificially increasing the amount of nicotine in order to "hook" people. That being said, there are also many other reasons people get LC -- if it was that simple, all smokers would have it -- but they don't -- and there are many people who have never smoked who do have it.

With your family to help you and your grandchildren as inspiration, I believe you will do wonderfully and hopefully can remain a part of this site helping others for many years to come.

Will be thinking of you on Wednesday - please let us know how you are doing.

Diane

[eric byrne]

Hi Sharon,

Welcome to LCSC,always a pleasure to meet a new friend.This has been a real home to me for over a year now,and I have since got to know all the buddies here,everyone has been so kind to me,they are such a friendly and supportive bunch.I was a wreck when I first arrived,a lung cancer dx is a pretty tough pill to swallow,and does take a bit of time to adjust,so dont worry,things do get better with the passage of time,one day at a time,easy to say but....I was so unprepared for this dx,something dreadful had entered my life and I didnt think I was equipped to deal with this,or have the courage to cope.Following my dx led to my oncologist laying out his treatment plan for me,which brought new anxieties,will my hair fall out with the chemo?(well not bothered about the gray ones),will I have nausea?will my surgery be excessively painful?will I be left breathless a permanent invalid?.oh boy you name it-I will have dreampt that up too.Well for all my worries,nothing close to my imaginings came true.I promise you I sailed through the lot,with only the slightest of discomfort.

Dianne's comments are so true,yes I smoked also, that through my poor life choices,my wife and daughter share in my pain.Guilt-dont punish yourself,many have lung cancer and never smoked,you cannot be sure your smoking led to this dx,it really is irrelevent,we are where we are,we cannot change our past,but we can have some control of our present.

You are not alone in your experiencing a unsolicited remark by a medical practitioner,who for some unfathomable reason passes out death sentences without reflecting first on how the reciprocant might feel.My GP and my appointed Lung Nurse,gave me only two years- max(my tumour was in a bad

place),I can tell you I am well past my expirey date and still here-also re-Robert Lowe.

I wish you all the very best as you go through your treatments and that you arrive safely out the other side,always remember you are now in all our thoughts and you will never be alone.

[mjb]

Sharon - Back before my husband was diagnosed he ran into a former co-worker and friend of mine at the coffee shop. Almost didn't recognize him because he had been going through treatment for lung cancer and had lost a lot of weight. Upshot was, I got back in touch with my friend and we started having lunch occasionally when he's in town. He me that when he was diagnosed, he had his sister go with him to the doctor because she was a nurse - they told him he had 3 months to live at the outside. He thought it was kind of funny because when he was telling me, it had already been a year or two. Last time I talked with him was a couple of weeks ago and he's still going strong. Don't let anyone set limits and don't waste your time feeling guilty - my husband smoked, my father-in-law who had the same kind of cancer smoked (though never heavily) and had quit 14 years before diagnosis, my father-in-law's mother never smoked or drank a day in her life and she had it. There's a lot they don't know about what causes cancer. Obviously.