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.