Cancer is an obsession

Cancer is no respecter of anything or anyone. It creeps into a life, takes over, and becomes an obsessive soul of thought. A friend's remission is over. She was told they would work at extending her life 10, may 20 years, but "you may want to get your affairs in order." I, in my wisdom, began to listen to her concerns, but am obsessed with telling my story as it connected (or really disconnected) to her story. Yes, I listened, however, in the conversation, interjected my journey.

It is not my journey that counts for her. It is her journey.

I recall when people would tell me of their aunt, cousin, grandpa, spouse, child, or whomever, has or had cancer and included the details. It was a compassionate gesture, a connection, an attempt to give hope or understanding. I thought: "But our story is more important to us now. Thanks for sharing and making an attempt to give compassion to our story...but your story is not our story."

Listen. Answer questions if asked, but listen. Cancer is tough enough without the need to be socially correct in a conversation.

It is all about the cancer, the healing, the processing, the emotions, and the love for the cancer patient. It is not about me and my journey, it is about her and her journey.

Cancer is an obsession. Forgive me if I obsess about our journey, because as any (remission) cancer patient knows, cancer is an obsession.

Human body puzzle

The past several weeks brought an urgency to, once again, get things in order. To make sure decisions are made, talk with those that are loved, and prepare for the next steps of treatment. A few months ago, we were told that the cancer was back. With more tests, it was not back. Then because of the spots found in his lungs, told he probably had lung cancer. More tests showed he did not. A few weeks ago, Dale was told it looked like bladder cancer had been found. With more tests, there was no bladder cancer.

A roller coaster of emotions, preparing for some kind of invasive cancer killing treatment, plagued our minds. With each clarification of the initial diagnosis, a feeling of relief was clouded with feelings of frustration and confusion.

What do doctors know any way? Do they drum up more business/income by requesting more testing, and thus more doctor visits, referrals for followup appointments, and therefore more testing? The medical billing cycle is well oiled in healthcare.

However, without doctor's opinions in personal healthcare, treatment will not happen.

We were told with mantle cell lymphoma that Dale would do well for awhile and eventually his organs would have difficulty functioning properly. Partially due to the weakened immune system and partially due to the enormous amount of chemotherapy. At each diagnosis we were ready to begin the new phase of Dale's cancer treatment, whatever that meant. Then with each false diagnosis we felt that a few more months of life have been granted.

A cancer surviving friend told Dale today, he will never feel well again. Harsh statement. What hope is there in that? Yet, it also gives hope in why he never really feels well. I have written many times in the blog, we often forget the impact  and intensity of his treatment. We just want the "cold" or "flu" to be done and get back to "normal" again. Not going to happen.

Healthcare Puzzle

Summary: the human body is a puzzle. With all its variables, healthcare people do pretty well keeping the pieces working and fitting together. Critical pieces of the puzzle may be damaged or missing and with a team of healthcare physicians, new puzzle pieces are created (prosthetics), replaced (organ transplants), or cleansed (chemotherapy). The human body puzzle is complete, yet not quite as good as the original puzzle.

More tests, more answers

Dale is suffering with lots of pain this week. Headaches, leg aches and fatigue. It has been very difficult to get through the days. He does not feel that he can leave the house because of diarrhea, bladder pains, loss of balance, and occasional blurred vision.  Last week he saw a pulmonary specialist. She said it was better that he had the sarcoidosis throughout his body than if it was just in his lungs. She also noticed that it is in Dale's eyes and has scheduled a MRI next week for verification. That does not sound that good. Some days are better than others and this week--not so good. Hopefully with more tests there will be more answers.

He made it to another birthday Wednesday and was delighted to hear from the grandchildren, always a wonderful event.

Just moments to connect

Sarcoidosis. That is what it is. Especially all over his lungs. Another doctor will look at him in two weeks. Symptoms continue to overwhelm his well being. Shortness of breath, fatigue, depression/hopelessness, and pain.

And it does not help when he is told he will have little visitors and they don't show up. Excuses seemed weak and he feels neglected. He was excited and looked forward to a lively visit. He had plans to entertain and enjoy their time together.  He waited patiently all day until, finally, was told they would not come. Maybe another day. Makes me sad. He works very hard to keep those connections strong. Seems to be non-reciprocal. Dale thrives on visits, socializations, and people connections. I can't imagine what he must feel as he is alone daily as I go off to work and he can't do much of anything.

Makes me realize that people, everywhere, need connections. The elderly, the feeble, the lonely, the alone. Take time to be with others, even if it interferes with your day. People you know are worth it. You are worth the connection.

I need to work on this myself.

Personal visits are the best, but phone calls or handwritten letters/notes are also nice. It takes but a moment to connect. But especially, show up when you say you are going to show up.

They call me Doctor

Dale has good days and not so good days. Yesterday was not a good day. His timing is usually bad for my world. I was ready to drive the two hours on my own so I could defend my dissertation today without him. Kind of a big deal for me and he had a lousy day that could have prevented him coming.   Sometimes I feel that he carries the worries of life within his health conditions and sabotages my progress. Probably not true, but seems that way sometimes...

He did well today with health conditions and we enjoyed the analytical discussion of the dissertation. About three clarifying paragraphs and its done.

They call me Doctor.

Well done, in spite of all the distractions Dale has given me over the past several years.

It was a memorable experience. The study brought some passionate self-reflections from each of the committee members. Exactly what it was supposed to do. They did not ask question about my methods or research, they commented on their experiences, practices, and beliefs and its impact on others.

Good Job!

Gathering more data

Dale met with primary care physician today to discuss the latest results of the CT scan. The lumps have spread more abundantly: lungs, lymph nodes, and chest.  Dale will go to another specialist for more tests and information. This doctor is anxious to proceed to find what is going on. There is concern. There is a problem. More tests, more data, more time.

He had a minimal day today. Weak, belabored breathing, and pain. Loss of hope, anger, and frustration have set in again. We had three nice days thinking he was on the mend. Good to feel that once in awhile.

Insurance causes delays and the doctor has to battle the system to do what needs to be done. Frustrating!

Misery in check

One week has made a big difference in Dale's well being. Sun is shining, he has been out in the yard, and he is feeling much better. The virus must be on its last weeks. Energy level greater, pain less dominating, and cough has leveled. Nose bleeds, dry coughs, and fatigue are common now. No kidney stone pain, some breathing difficulty, and his back pain is becoming more of the issue rather than the virus symptoms. Progress. Attitude improvement.

This week is another CT scan. Still don't know what pulmonary physician wanted to tell him. Insurance did not want to support that appointment.