The End of a Journey

First let me make perfectly clear...there is NO CURE for stage 4 non-small cell lung cancer.

I had touched lightly on my husband's cancer in regards to the relationship with his faithful companion Holly and her loyal dedication...now as we believe the journey is ending, she is sending signals of what is to come.

We can learn so much from dogs, how they process grief, how they move on with their lives, and watching them for signals on moving on has been a new lesson for me. Holly has been trying to tell me something. Her detachment now and once never ending vigil by her master's side is decreasing.

In September, 2011...we were post eight rounds of chemotherapy. The massive tumor was shirking and very small. In November, the tumor had become nearly nonexistent...although lymph nodes were still hot on the CAT scan. Doctors were elated, this was a triumph and a possible road to remission. Infact, one of the oncologists said it was remission, and my husband happily went back to work on a short schedule. His men, as he called them were so happy to have him back after seven months as he is a good leader and taught them so much with his advanced skills in metal fabrication. He was doing so well, and was about ready to go back to his eight hour schedule....we thought the worst was behind us. Then one evening he came home with a severe headache. His potassium levels had been very high just a few days before, and he was administered a binder. As those levels can cause the heart to stop, and no explanation could be provided.
We entered the hospital the next morning, the pain was excruciating. While we went through all sorts of tests, no one could come up with any explanation. We were referred to a neurologist at KU Medical center, the tests showed a stroke in the eye that had caused the pain and loss of eyesight. I feel strongly in my uneducated opinion, it was caused by the series of chemo drugs, or combination.

Chemotherapy is the only chance of possible survival or remission. A slim sector (the miracles) of patients do experience remission of two to five years from these drugs. But what we did not ask, as we were desperate for that miracle, were the effects of such drugs. I am not so sure the cancer itself would have been much worse. The neuropathy caused by the drug cisplat in the hands and feet is so very painful. The pain the patient goes through while being poisoned with chemo is something to consider if you are smart enough to "ask" the right questions.

One thing I do want to be sure to share, is to listen to your body. If you become extremely fatigued, or have anything unusual going on...don't dismiss it, and get to your doctor. If your doctor does not listen to your concerns, get another doctor.

While he did have two hospitalizations one in November, and then again in December for bronchitis at which time another CAT scan was done, and tumor in check...at our appointment just one month later, the tumor was back and growing. We were shocked, looking forward to another clean "cancer under control" report, and thinking work which is all he wanted in the entire world would be approved and he would be released again for a short schedule.

The point I am trying to make sadly, is although they say attitude is everything when fighting cancer....and it is for the patient, do your research. Read statistics at Cancer.net, Cancer Treatment Centers of America, and other sites. I am talking about specific cancers, and stages. Non small cell lung cancer kills more people than breast, pancreatic, liver, bone, brain and stomach cancer combined. This I found out on my own via web research.It would have been nice to have known this initially...but I did not "ask" the right questions.

Do I feel angry that oncology used words such as "cure", which is pure fiction? Yes, I am angry...our primary physician raised an eyebrow when I relayed the "good news" in November when I had our child in for his flu shot. Am I angry that when I tried to pin them down to anything other than "think happy thoughts?" You're damn straight I am angry. To tell patients the truth, is that too much to ask? At least tell their spouse when they pull them aside and look them in the eye for answers. I told them I am tough, but don't play emotional mind games with me when I can do a little research to find the truth. I have to know the truth. In November or December, I do remember becoming insistent with oncology, and our oncologist incharge knelt down, looked me in the eye and said, "you want statistics, but we don't know God's plan...." No we don't know God's plan, but God has given you loads of patients to provide statistics, and I feel it is your mission to provide these up front.

Now in being fair, I am told by a retired oncologist friend that on that day in November, indeed the cancer was generalized, had reduced in size to the point it was hardly detectable. The lymph nodes were hot in the CAT scan, glowing....but this would be normal. we did have remission for three months. Until the chemo had worn off.

For that I am grateful....but to keep hoping, being told the first two years are the hardest, makes one believe there will be two years. And then on a routine followup, we get the "well, the cancer is growing rapidly, we can put you through four more weeks of chemo but will be mostly treating side effects.....or you may go into hospice." "We can also check with other cancer centers to refer you..." "You have choices to make" It reminds me of the drug commercials, side effects are anorexia, lethargy, general pain and suffering....but the upside is you will receive possibly three months. Which is worse?

What happened to the cure word? So you are saying after all of this treatment and cheer leading that's it? Then Damn it! Say "that's it!" Advise patients on what to do. What would you do if it were you is my new question....and I feel it is your obligation to give me a straight "answer." I have boxed up my pom-poms, and advise you to do so too....but looks like you already have.