It seems to strange to me to be updating the blog and not be able to tell you how Tom is doing.

I received the following poem from a friend of mine a while ago and thought it was worth sharing with you.

You can shed tears that he is gone
    or smile because he lived.
You can close your eyes and pray that he will come back to you
    or you can open your eyes and see all he left.
Your heart can be empty because you can't see him
    or can be full of the love you shared
                                              - David Harkins

There are many things that I miss about Tom and worse is that he was so capable of doing so many things and I don't even know where to being.  The toilet broke and I didn't know how to fix it.  The water softener filter needs to be changed and I can't get the cover off.  I can't fix the timer on the towel warmer.  Every where I look, the little things he took care of, and some not so little.  I'm lost.  I can't find my way.  And I'm scared.  How do I live without him?  People keep telling me it will get easier.  It isn't.  I know I'm not the first person to ever have to go through this but I just don't know how it's done.

In a previous blog I mentioned the 5k walk that I am coordinating to take place on November 5 at NHTI to raise money for lung cancer research.  Last Sunday I decided to start contacting some local newspapers to ask for free ad space,  not only to advertise the walk but, to inform folks about the devastating effects of lung cancer.  As a result of my inquiries, on Friday the Laconia Citizen came to my home to interview me for a human interest story.  I had the journalist in tears with my story.   I am so grateful they took an interest.    I will take all the publicity I can get if it helps people learn more about lung cancer and if it helps to raise money for lung cancer research.

I also had a meeting with the Oncologist last week.  It was not our imagination that Tom seemed to be getting better.  The Oncologist indicated with Tom's original cancer diagnosis, and the aggressive treatment they administered, he expected him to recover.  The cancer that showed up in his spine was a shock to his physician team as much as it was to us.  When I asked if it was related to the lung cancer he said he couldn't be sure but had to assume it was.    He also said he would try to be more forthcoming in supplying his patients with more information in the future.

I want to share some lung cancer statistics with you.  You'll be seeing these again in the future as we gear up for the November walk.

• Lung cancer is the NUMBER 1 cancer killer.  More than breast, prostate, colon, ovarian, non-Hodgkin's lymphoma, and melanoma cancers combined.
• Lung cancer impacts 1 in 14 Americans.
• More than 1 1/2 times as many women die of lung cancer as breast cancer
• 65% of Americans diagnosed with lung cancer have either never smoked a cigarette in their lives or have quit smoking.
• Less than 15% of people diagnosed with lung cancer survive 5 years post-diagnosis because it is discovered too late.
• There is no widely available effective early diagnostic tool available today.
• If lung cancer is caught before it spreads, the chance for survival improves to over 60%.

Do you know why fewer people die of breast and colon cancer?  Because of early detection as a result of screenings available.

As I have become more involved in the Lungevity Foundation and the upcoming walk I have learned more about lung cancer.  Before Tom was diagnosed with it we didn't think about it.  I ask myself, why is that?  Breast cancer fundraising efforts are advertised all the time.   Colonoscopy's are recommended, by physicians, after a certain age.  Breast cancer awareness, breast and colon early screenings are due to efforts of folks like you and me who pushed for these things to happen.

When I see folks I haven't seen for a while and they find out Tom passed away from lung cancer, the first thing they ask is "did he smoke?"  I think that is an incredibly narrow minded comment.   Given the above statistics, only 35% of those who smoke die of lung cancer.  What's more baffling to me though, is if someone passes away from breast cancer we don't ask "Were they taking hormone replacement therapy drugs?  Did they eat right in order to prevent breast cancer? Were they overweight?"  These are some of the causes of breast cancer but it never occurs to us to ask these questions.  When someone passes away from colon cancer we don't ask if "they ate enough fiber", "if they were overweight".  Isn't it the same thing?  More importantly, Tom did not deserve to die this way.  He never did anything in his life to warrant the pain and suffering he endured as a result of this horrible disease.

I would be the first to say I would much rather stop big tobacco from manufacturing and selling smoking products.  It isn't going to happen.  There is too much money involved and too many influential people that aren't going to let that happen.  Cigarettes are the most addictive drug on the market.  We can say smokers knew the risk.  We could say that about crossing the street.  Doesn't it seem that early detection, as with other cancers, would be the answer?  Or, do we bury our heads in the sand and say "Well, if they smoked they made their choice".  Is it a choice?  If it is, why don't you loose the 10 lbs you've been trying to loose forever?  Why don't you work out every day like you said you would?  If you don't couldn't you have the next heart attack?  Does the prospect of that make you take better care of yourself?  We're all out there, as long as it's not happening to us.   

I am going to do everything in my power to make the November walk, in memory of Tom, work.  I want to bring an awareness to lung cancer and some day maybe there will be early detection.  Someday there may be a widow sitting in her house all alone, missing her husband, but it won't be from lung cancer.  Some day.

Thank you Brenda and Kerry for your comments on the last blog.  Your comments, as always are very much appreciated.

Thank you all.

I will start this Blog with the response I received from Tom's Oncologist....

"Dear Ms. Drolet

I received and read your recent letter with great sadness. I am very sorry that I and my staff did not provide the support that you feel you and your husband needed in his time of need. Our best efforts were not enough and for that I am truly sorry.

Tom developed a dramatic and relatively unusual development with metastatic disease in and around the covering of the spinal cord. I want to reassure you that every attempt was made to help improve his pain control and his overall functioning. However, nothing that we could have done would have changed the course of his illness. It is the sad but unfortunate truth.

His loss was, I know, truly devastating to you. If we could be of any help in answering any of your questions about his illness or if you feel that a talk with either the hospice social worker and bereavement counselor or a talk with Paula Plona, our oncology social worker here at the Payson Cancer Center, might be of benefit, please let us know.

Again, I am very sorry that we fell short of fully supporting you and your husband.

Also, thank you very much for sending me the book Love, Medicine and Miracles. I very much appreciate it.

Again, my condolences to you on your husband's passing."

I believe his response is sincere.  I am going to call him tomorrow to make an appointment to talk to him about Tom's cancer.  I know it won't bring Tom back, although I would give anything if I could, I still need answers.  There are those of you reading this Blog who would think this is a waste of time but please believe me if you are ever in the position  I am in now you would feel differently.  I hope my letter will help the next family who has to deal with this devastating disease.

Thank you so much Kerry for your comment on the last Blog.    You say Tom did not deserve this disease.  You were there.  You know how he looked in the Hospice House.   To see someone like Tom, who never stopped, end up the way he did was devastating.  To watch it happen day after day was heartbreaking for me and for anyone else who watched the disease unfold. 

I can't tell you all how many times I've known folks who have lost spouses or loved ones.  I've said I am sorry and truly meant it.  There is no possible way you can really understand what happens to the ones left behind until you've been there.  I know I didn't.  Any of you who know Tom and I know that we not only loved but respected each other.  How does one recover from that?  Any of you who know me also know the last thing I want is pity or sympathy.  Believe me when I say I wished I could feel differently.  I wished there were just one day that I would not be crying.  I wished there were just one day that I didn't see the look in Tom's eyes when he knew he was going to die.  I wished there were just one day I didn't remember him withering away.  I wished there were one day, just one, that I could talk to him, hold him, be with him, if only for one minute, just one.

I finally went to see my Mom this weekend.  She is 86.  I may have mentioned this in a previous blog but I never told her Tom was sick because she is home bound and I thought there would be no point in worrying her.  I haven't seen her for several months and it took all the courage I had to see her because I knew I would fall apart.  She asked how I was doing and we both started crying.  She lost my Dad when he was 47.  He dropped dead of a heart attack.  She told me "they say it gets better but it never does".  I believe her.  This kind of trauma changes you.  

I love our kids.  I love our grandchildren.  I am not lying to you when I tell you that I wished I had died that day with Tom.  Again, please know I do not say this for sympathy.  I have discussed this with our kids.  They know how much I love them and this isn't about them or the grandchildren.  I am trying to "get it together" but I don't know what that means.  Because at the end of the day I'm alone without the love of my life.

I have gone back to work two days a week in the office and the other three days I am working at home at the urging of my pastor.  My boss told me the other day that I come in the office, I don't talk to anyone and that I need to start reaching out to people because I am making them uncomfortable.    I have all I can do to go to work on the days I am there.   I am so appreciative of everything the folks in my office have done for me during my absence.  I have told them that.  I have, and would never, take advantage of anyone or deliberately make anyone uncomfortable.    I am telling you this because it is just an example of how people do not understand how hard this is.  And I guess I don't know how they would unless they have been where I am today.  I hope any of you reading this never has to experience the emptiness that I feel every day. 


I am putting these things in the Blog because I now understand what grief really means first hand.  I am hoping I can give you just a glimpse of what it feels like so you have some sort of understanding when you see me and you don't think I've "moved on" the way you might have thought I would.

My kids keep telling me I am stronger than I think I am.  They have been incredibly supportive and I could not ask for better children.  I'm not sure they are right but I'm working on it.


For those of you reading the Blog who think I should seek counseling I have done that as well. 


I continue to receive offers of help and I am so very grateful for that.  Thank you so much.


I am so thankful for those of you who continue to call and stop by.  Your never ending support means everything.




I am working on the November Lungevity walk and hope you will all be joining me.  I will be posting the information on my Facebook and Twitter pages (Kelly helped me set these up).  I am also hoping to advertise in the local papers so please be looking for it.  Lung cancer is such a devastating disease.  Please help me to bring an awareness of this disease for those who are living with and dying of this disease.



 

It's good to know that some of you are continuing to read the Blog.  Thank you so much for your support.   I do appreciate the comments. 

Every day is a struggle.  Everywhere I look, everything I do.  I keep thinking Tom will somehow come back.  Then the other day things got even worse.  I switched my cell phone over to our daughters plan to save money since I don't use any minutes and we no longer have two phones.  In doing so I canceled the line Tom and I had.  His voice mail was on the line.  The only connection I had that I could still hear him.  It's gone.  It's not bad enough that I lost him and now I can't even hear his voice.  It just keeps getting better.

I am posting this Blog to share with you the letter I sent to the Oncologist who treated Tom.  I'm hoping it will give you just a glimmer of what we went through the last several months.  I was a little kinder in the letter than I felt in my heart but I wanted to make sure he read it.  Maybe it will make some sort of difference for the next person.  I have eliminated the doctors name and address.

I’m not even sure where to begin although I felt it important to write to you summarizing the course of events that occurred throughout Tom’s treatment.

After months of Tom going to the doctor and having them continue to mis-diagnose his illness he was finally diagnosed with a tumor in his lung in May of 2010.  Needless to say, the wave of fear that came over us, I don’t believe could ever be explained.  The anger with the mis-diagnosis  that I believe was a blatant disregard for human life may fester forever.

Once he was diagnosed, he went through several tests to prove that he did, in fact, have non-small cell, stage 3A lung cancer.  This is the most information we ever received about this disease throughout his whole treatment.

We were then told he would receive 30-some radiation treatments along with chemotherapy as an aggressive approach to get ahead of the cancer.  We waited approximately six grueling weeks for the treatments to begin.  Throughout the summer of 2010 Tom endured this aggressive approach of treatment without ever complaining.  

Not once, during that time, did anyone ever explain to us what this disease might do, what our ultimate chances were, or how the disease worked in general.  We didn’t ask questions.  I’m not sure whether we didn’t ask questions because we were too afraid of what the answers might be or if we just didn’t know what questions to ask.  How would we know what to ask unless we had some experience or knowledge to base our questions on?

We were visited by a nutritionist, who, while being very pleasant,  added absolutely nothing to Tom’s treatment.    For someone to tell a cancer patient, going through treatment to try to continue to eat, and to eat things they didn’t eat even when they were well, showed me that they had their own agenda and did not listen to what we were telling them.

As Tom went through those treatments without ever complaining and with more courage than I would have ever had,    I continued to pray each day that he would be able to win his battle with cancer, as undoubtedly countless of other people do when battling this disease.

I made the decision that I would be his caretaker so that if something did happen I could be with him every minute that I could.   

The treatment took its toll on him.  He was so frail during that summer that he needed help getting up and getting dressed to face yet more grueling therapy each day and he did it because we were so hopeful that he would get better.

After his treatment, on December 21, we were told that the treatment hadn’t worked as well as you had hoped but that we would try to stay ahead of the disease by giving him more chemo after the first of the year.  Still, not much more information than that.

Of course, we all know what happened then.  The first of the year was barely there and Tom was experiencing excruciating pain in his spine.   Tom was admitted to the hospital for an MRI to see what was causing the pain.  We were repeatedly told by the hospital Oncologist that he thought Tom had a herniated disc.   Tom and I were ever hopeful.

Of course, typical of our experience with this disease the hospital stay, too, proved to be a fiasco.  The results of the MRI did not come back when expected.  I suppose, in hindsight, this may have been due to the diagnosis.  Once the results were in, the hospital Oncologist walked into our room told us very matter-of-factly that the cancer had spread to Tom’s spine and that he was sorry to tell us that but as long as the pain was under control Tom would be discharged.  We were also told that Tom would receive radiation treatments.

We thought the radiation treatments were going to help fight the cancer.  We did not know the radiation treatments were for pain management.  In fact, we were never told this and to this day do not know if that was the case.  I came to this conclusion based on something I read later that lead me to believe this to be the case.  It was NEVER because anyone informed us of what the next steps were.  In fact, it was a couple of weeks after the hospital stay before we had another appointment with you.  We were left in limbo.

Tom continued to get steadily worse.   He kept thinking it was the radiation.  Again, thinking, as with the lung cancer, the radiation was being administered to help destroy the cancer.  We met with you, at our follow up appointment.  We were told that in spite of the treatments the cancer  had spread.   There was nothing you could do.  You told us that we could get a second opinion but you didn’t think it would do any good.  You told us that we could get more treatment but  you didn’t think it would do any good.  You told Tom that you were going to put him on hospice so that he could live out the rest of his days with dignity and pain free.  You told us youwould see Tom in a few weeks and you left the room.  Tom and I looked at each other in shock and disbelief.

We felt that you couldn’t stop the cancer so you were “washing your hands” of us and that we were being pushed off a cliff.  Regardless of how you think the conversation went that is exactly how both of us left there feeling.

What a joke.   Tom didn’t even know what Hospice was and not once was it explained to him until the Hospice nurse came to our home a week or so later.

Not once, even then did anyone tell us what to expect and, to die with dignity? Please!  After what we have experienced I would be hard pressed to believe that anyone with cancer dies with dignity, whether they are on hospice or not.

Do I believe you did everything you knew how to do?  Yes.

Do I believe you could have given us more information, explained how this disease worked, been more compassionate?  Yes. 

Do I believe there should early detection and that testing for early detection is dictated by insurance companies?  Yes.

I would hope that this letter would encourage you to be more compassionate with your patients, even the ones you can’t save and that you would be more forthcoming with information.  Explain to your patients what is happening and why.  Make sure they know what hospice is.  It is, after all, their final decision.

It would also be my hope that you would advocate for early detection of lung cancer so there may be some small glimmer of hope for others.

I have lost the love of my life.  Tom and I were happily married for 40 years.  I am now at a loss to know how I am going to continue to get up each day without him and whether it’s even worth it.  He was a remarkable human being.  The likes of which there are a select few.    The world is NOT a better place without him.

I have enclosed a book for you, Love, Medicine & Miracles.  I hope you will read it and that it will help you to become a better practitioner or at least give you a different perspective.

I have come to have little faith in the medical community.  If you go to your doctor and he or she doesn't fix the problem, find someone else.  Don't always take their word for it.   Someone told me after I discussed this with them that that's why they call it "practicing medicine".  That gives you a good feeling, doesn't it?

I never used to read the obituaries.  Now I read them, look at the descriptions and wonder if those wives or husbands left, who have been married for many years like we were, are feeling as empty and alone as I feel now.  My heart goes out to them.

Take nothing for granted.  Take care of yourselves.  Take care of each other.  Live life each day.  Don't settle.  

Thank you for reading the Blog.  Thank you, again, for your support.  I hope the Blog has a message that teaches us all something, that makes us think about our lives and whether they are the way we want them to be, that makes us consider making changes if they aren't and that makes us treasure those that we love.