Skip to content

Long time….

Observations from the Oncology Treatment Room

Part 20, May 2, 2012

It has been a while since I published any thoughts or writings about life and/or cancer.  I apologize for the hiatus to those of you that are concerned or follow my progress.  Although I did write things on my visits last November, I did not post them.  I must admit there are times as a human being that I don’t feel like sharing my thoughts, regardless of the cancer within.

I think of the struggles I’ve faced and although I do not minimize them, they are small compared to the struggles I see in others.  For example, I work with a courageous young man that lost his wife last summer to a tragic situation.  He and his wife were very much in love and had two small children.  In fact, during one of my conversations with him prior to her death, he had told me that he was falling in love all over again.
I see this young man almost daily.  I see the pain in his eyes for the loss of his wife from several months ago.  At times it seems like yesterday.  I see the hope he has for his children.  I see the strength and character he has in his ability to even function through the pain and loss he has suffered

We talk regularly about life and his kids and how he is coping with his situation.  He is an inspiration to me in so many ways.  His daily survival is so much more than I have endured.  I have lost weeks, months maybe in my battles.  He has lost a lifetime with his wife.  My pain and suffering seems insignificant.

Through it all, his smile is contagious.  His eyes light up as he talks of his two small children.  He is working through his pain.  He is my daily inspiration and reminds me of how fortunate I am, regardless of my situation.  I have so much to be thankful for

Although I am not necessarily thankful to be sitting in this chair in the oncology treatment room, I am thankful I am alive and able to function.  I am thankful for my family, my home, my job, my faith.
At this time, my frustrations grow as I sit here, with a needle in my port, but no treatment being administered.  I have been advised the staff is waiting on a fax for approval to administer the drugs that had to be mixed specifically for me.  Historically this treatment averages over $8,000.00 and they have it here, mixed and ready to go.  It has been forty minutes.  I’ll wait another twenty minutes and see what happens.
——–
Well, I waited more than a hour!  And they were still waiting to hear about approval.  So I asked them to check again, so they called about it.  They advised me it could take up to 24 hours for approval.  What?  Then why am I hear waiting?

I had them pull the needle and I went home without treatment.

This was because they were trying to get assistance for the medical billing for the treatment through the drug company.  I told them I didn’t need assistance, I had insurance and with the cost of the PET scan, my deductible has been met.  They didn’t care.
Will try again next week.  Maybe….   ; )

Observations from the Oncology Treatment Room Part 18, Nov. 1, 2011

Tuesday, November 1, 2011

Here it is, a bright, sunny, fall day. Going to work last night, I could see my breath for the first time this season. The cold weather is on the way. “Cold” is a relative term considering I live in the Atlanta area and considering the other parts of the country I have lived in. For example, Greeley, Colorado had about a foot of snow last week. Makes this little “cold” seam rather mild. I guess I am getting soft in my old age.

It has been a while since I’ve written, but by the grace of God, I have not sat in this chair since May 24th. My life has had some bumps in the road, but I muddle through. One of the good bumps is my new dog, Buddy. A golden retriever. He is seven moths old today. I never thought I would want another dog for several reasons. Buddy has been very therapeutic for me. He is a happy go lucky, and sometimes goofy puppy that constantly brings a great attitude and always seems happy to see me, unlike other people I come across in life.

Buddy is a great social activist, sniffing other dogs and people sometimes. We sometimes go to local dog parks, where Buddy makes a lot of friends and I meet several other dog owners. He helps me stay active which has helped me in many ways, including losing weight and being outside more. With both children away at college, Buddy has been a constant companion during most of my waking hours.

But enough about my dog.

The last several months have been difficult. The daughter of friend died early in the summer and then in mid-October, a friend and co-worker died. The summer was filled with grief and joy, tears and laughter. Grief in the loss of friends, joy in knowing they are no longer suffering and both are in a better place. Tears for many things, the children they left behind and the pain of losing a loved one in the prime of their lives. Laughter in the memories and reminiscing shared with other friends.

The loss of these friends makes me think how fortunate I have been. To think I have been dealing with cancer for 21 years this month is remarkable. It is remarkable that I am still here, still fighting and still beating the odds. That makes me wonder “why me?”

Why am I still here and two other lives been taken that still had so much more to give? Why has my disease lingered, gone away, returned and repeated the cycle so many times? Why do these little children have to go through life without a mother when my children were able to have me? These questions and others make me wonder.

So here I sit in the treatment chair. My mind racing in several directions, going over and over the same things. Being thankful that I still am here. Even if I am in an oncology treatment room. Thankful that I will see my children in about three weeks during the Thanksgiving holiday. I hear from my daughter on a regular basis. Mostly regarding money since she moved into an apartment and going to school full time and her part-time jobs not being enough to pay the bills. But at least I hear from her.

The treatment room is getting busier, but it is after 11:00 a.m. I arrived this morning at 8:42 for my 8:45 appointment. I was escorted back to the exam room where the nurse took my vitals and my blood. She accessed my port and we exchanged pleasantries. I fell asleep on the exam table while waiting for the doctor. It was uncomfortable and I woke up a few minutes later. I then adjusted the back of the table to a reclined position and fell back asleep.

After about a 30-40 minute nap, I was woken by a knock on the door and then the door opening and the doctor coming in. The doctor sat down and apologized for the lateness by saying it seemed like he starts the day off behind with all the appointments he has. He then went over my scan results. Overall, he said it was looking good. Just one area of uptake in my upper left side, near my neck. I don’t exactly remember what the area was called.

The Benedryl is taking affect and I am starting to drift off a little. More later.

It is now 2:00 and the Benedryl induced sleep finally wore off and I am groggy but awake. My IV bag still looks like about a half hour to go, so I have a little time to write.

As I look around the room, there is only one familiar face. A woman, about 35 years of age that was here back in May when I was last treated. Other than that, I recognize no one, except most of the nurses. Even a couple of the nurses are new.

The man next to me is told his white blood count is non-existent so he cannot receive treatment today. He doesn’t understand. He tells the nurse he needs the treatment to survive. She tries to calm his fears and explains the dangers of continuing treatment with a low white cell count. A minor cold could quickly become life threatening pneumonia in a few days. The doctor had written a prescription for an antibiotic for him to take to help protect him and assist his immune system over the next week.

“We’ll try again next week,” the nurse tells him. The older gentleman slowly gets up and walks away, feeling dejected, somehow being robbed of what most cancer patients hope to be life saving treatment, even though it depletes the human body of the ability to fight off minor infection. We sometimes wonder if the cure is worse than the disease.

There are several things that make you question cancer treatment. The first thing is the medical staff always warns you that everyone is different and there are no guarantees that the treatment you get will work. In fact, they will usually tell you that the treatment you are receiving may cause other side effects that can be life long ailments. One example of this is diabetes.

When I received radiation treatments twenty years ago, they stressed the possibility of contracting diabetes as a side effect of the radiation treatments along with about a dozen other possibilities. I ended up with some bad side effects. The radiation damaged my discs in my lower back in the radiation field and also damaged my colon. I am also a diabetic now.

Is the treatment worse than the disease? I would still say no. The issues I have had were serious and emotionally traumatic. But I am still here and seeing my children succeed in their endeavors, positively impacting some people around me and enjoying the sunshine and new friends, new beginnings and seeing some things end.

Early detection is very important in fighting and overcoming cancer or any disease. As for me, I will continue the fight, take the treatments and survive as long as I can. I will continue the course of treatment and testing and trusting that the course of action is the right thing to do.

I will keep trusting in my God and give Him praise for the life that I have. For the healing I have experienced over the years, and the new beginnings I have been blessed with.

Until next time.

Observations From The Oncology Treatment Room

Observations from the Oncology Treatment Room
Part 17, May 24, 2011

Tuesday, May 24, 2011.

It is a beautiful day today. Life is good, albeit with challenges, adventures, triumphs and defeats. We (I say we as if talking for everybody out there) only hope that our triumphs far outweigh any defeats, or should I say setbacks.

After twenty years of fighting this disease, I can honestly say that the triumphs have outweighed the defeats. I get beaten down sometimes, discouraged by the disease and sometimes want to give up. Yet my desire to live and love and to be loved has far outweighed the fleeting moments of defeat or depression.

After working all night, I am doing well, but will soon feel the effects of the Benadryl and most likely snore a little while after I fall asleep. The nurses say I don’t snore too much or too loudly, but they say it with a smile on the faces. It makes me wonder, because my children (bless their hearts) tend to say the neighbors could hear me. In fact, my daughter and I shared a motel room one time when we traveling. I am thinking it was to visit a college, but I am not sure what the trip was for.

Anyway, she ended up sleeping on the bathroom floor with the door closed, with the exhaust fan on and her headphones in with her iPod turned up and still said she couldn’t sleep due to my snoring. I think she must have been exaggerating. After all, it didn’t wake me up.

I do hear other people snoring in here through the day. I hate to admit that it has always been men that snore. Like last week. There were two other men that were snoring at the same time. It was actually comical. It was sort of like an episode of “The Three Stooges” where they all snored in sequence, each making a different sound, but keeping perfect timing. Then every once in a while, one of them would break the rhythm and do one of the “stutter” snores where it seems like they took a deep breathe and had what I would call a rapper snore, where there were several short bursts in rapid succession.

If I could replicate the sound in typed word, it would be unique. But you have probably heard it, that three short bursts of inhale snorting. Interestingly, it was timed perfectly to continue to keep the rhythm with his counter part.

After my treatment was complete last week and I packed up and began to walk out when a man stopped me. He was sitting in the last chair in the room and seemed to be in good spirits. “What are you in for?” He asked.

“Lymphoma” I responded.

“Me too.” He said.

Having something in common, I felt compelled to chat with him for a few minutes. Turns out he was an Air Force pilot during the Viet Nam conflict. When he retired from the military, be became a pilot for Delta Airlines. He is now seventy two years old, retired and fighting lymphoma. Not a great way to spend your retirement.

He had purchased a WWII German fighter plane and restored it and flew it around the country for exhibition with different air shows. He had restored it and then sold it several years later. We continued to talk about his flying, I told him about my dad learning to fly during WWII in the Army Air Corps and his continued flying after that until he was about 70 years old.

We talked about the lymphoma. I told him that I had saved an article from TIME magazine from several years ago that discussed lymphoma and the article indicated that exposure to petroleum products was one of the causes of certain lymphomas. He indicated he was not surprised, and thought that could be part of his problem with his aviation career and then the restoration of the old airplane.

He also mentioned several of his Viet Nam buddies had died of cancer and he referenced “Agent Orange” and how that was dispersed to kill foliage in the jungles to help them navigate through them. “Yeah, I’ve heard of that.” I replied.

I looked up Agent Orange on the internet at a Veteran’s Administration website that is provided by our government. It lists fourteen possible diseases that are possible side effects to the exposure to Agent Orange. Included in that is several forms of cancer, including Hodgkin’s Disease and Non-Hodgkin’s Disease. Both are forms of lymphoma cancer.

Thinking of this veteran, I am reminded that this weekend is Memorial Day weekend. I sit here getting this treatment and remembering this conversation and thinking how fitting it is to recall and write about this at this time. This is one more thing to add to this weekend of memories, memorial services, family outings and picnics.

As for me, this weekend is also the anniversary of my father’s death. He died May 27th, 1995 of organ failure related to his advance leukemia. We buried him on his 73rd birthday on May 31st. He was a WWII veteran, having served in the Army Air Corp, stationed out of Homestead, Florida.

I have always had a great deal of respect for our armed forces and their sacrifices for the freedoms and rights we have as Americans. If it was not for their sacrifices, including the exposure to enemy fire, gunshot wounds, loss of limbs from land mines, even sacrificing their own lives to keep the United States of America a free nation.

Add to that list (above) the ongoing list of diseases caused by exposure to chemicals such as Agent Orange and the mental issues and traumas they suffer by their commitment to maintain and fight for our freedoms. Our service men and women deserve greater respect and gratitude than what we, as a nation, give to them.

May God bless our armed forces and their families. To all of our armed forces: active, retired and reserves, THANK YOU for making my freedoms and rights as an American citizen possible. Our country owes you a debt of gratitude.

————–

Benadryl has worn off and although I am not fully awake, I am functional, sort of. I guess that depends on how well you know me and gauge my level of “function”.

The treatment room is the fullest today than any of the other three treatments from this go round. Only two chairs are empty today.

I am sandwiched between two ladies that have been busy on their cell phones. Both of them arrived and have been here by themselves, such as I, for the duration of their treatments. Their phones are the equivalent of to my computer and typing this blog. It is a way to provide a distraction from the loneliness and isolation people feel when being treated for or dealing with this disease.

Another gentleman down the line talks on his cell phone also. He is still waiting to get his IV connected.

The man next to him was here last week. He must have arrived when I was in the Benadryl induced coma. He appears to be in his 60s. He wears a large wooden cross on a leather cord. He appears to be clergy. He wears a wedding ring and his wife sits next to him.

They sit in silence. She reads a magazine. He sits with his hands folded in his lap, blanket covering the lower half of his torso. I am not sure if he is sleeping or praying.

The room is quiet for the amount of people that are here. There are a few muted conversations going on. For the first time, the two ladies beside me are quiet, cell phone conversations have ended. It is an eerie quiet. It seems a much happier place when there is more conversation, more normal. Out of the nineteen patients in the room, there are only three with someone here with them for support.

Work schedules and other obligations sometimes prevent spouses, loved ones or caregivers from being present during treatment. This disease is scary enough to fight with support of your loved ones, but doing it alone is harder. Support is very important for any cancer patient. Some of us need more than others. Everyone is unique.

The more fragile someone appears, the more support they need. Even when someone seems strong and continues to fight, don’t be fooled, they need support also. They may not need the constant hand holding and reassurance some others do, but they need to know their existence matters to others.

Everyone needs someone or something to live for. Be that someone to someone you would like to be that someone to. Make sense?

Compassion and love are in many ways the same. You can compare love to the ocean. The ocean is grand and appears full, and yet the rivers and streams of the world continue to pour into it and yet it is never full. So goes the human heart. Have you ever heard someone complain that they are loved too much? That they have too many close friends? I haven’t. Have you ever felt that you weren’t loved enough or abandoned? I have.

So be the someone you would like to have if you were the someone in the treatment chair.

I leave you with this thought today. It is not a new concept. Be the someone your someone needs.

Ecclesiastes 4:9-12 (NIV)
Two are better than one, because they have a good return for their work: [10] If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up! [11] Also, if two lie down together, they will keep warm. But how can one keep warm alone? [12] Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken.

Observations Part 16 – May 17, 2011

Observations from the Oncology Treatment Room
Part 16, May 17, 2011

Tuesday, May 17, 2011.

What a difference a week makes. My appointment was scheduled for 8:30 a.m. I was taken back to the exam room at 8:25, vitals and blood completed and sent to the treatment room by 8:36. It is now 8:45 and the Benadryl is flowing through the IV. A good way to start the day. If you can call it that, after working all night.

I have come to realize, perhaps a second or third time in my life, what this disease does to me twice a year when I go through the treatments. My life suffers in many subtle ways. There are a few side effects of the drug that I generally push aside and try to work through them, but some of it goes beyond that and they manifest themselves in mood swings and muscle and joint pain. I guess you can call it a pain in the neck.

I say that with some seriousness due to the fact that stiffness and pain seem to radiate through the base of my neck up to the bottom of my skull. If nothing else, the constant dull ache may be a contributing factor in my actions and attitude.

Joint pain or soreness, back or muscle pain is just a few of the misc. side effects that Rituxan lists. This can explain my pain in the neck. There are several other side effects, some more serious than others, but they generally don’t affect me. At least I don’t appear to suffer from any others at this time.

One side effect of the disease is irritability. I have found myself being a person I don’t want to be. I lose sight of the some of the important things in life, including family, friends and co-workers. My whole world suffers with me, mostly because during the four to six weeks that I endure the treatments and then allow time to flush my body of the drug, I can be insensitive to others and not always think things through clearly before I react.

Notice I said irritability is a side effect of the disease, not the drugs, although it can be both. Another side effect, at least for me and several other cancer patients I have talked with is depression. Being told you have cancer can be devastating. That devastation leads to depression in many cases.

Do I get depressed? On the inside, yes, definitely. Every six months, when I have to repeat treatment, I go through bouts of what I would call minor depression. On the outside I appear fairly strong, trying to put on a good face and attitude. On the inside, I am in turmoil.

I know that it affects the way I interact with everyone that I come in contact with. I become defensive and reply to things and people more harshly than I should at times. Sometimes I catch myself and bite my tongue to keep from saying the wrong thing. I must continue to learn to read my own emotions and temper my reactions, and not let my irritability guide my responses.

This morning, as I was driving here for my appointment, I cried. I didn’t cry like a baby or weep openly, but I felt a pain well up in my stomach as I faced another day in the treatment chair. A single tear rolled down the left side of my face. My mind races through the course of recent events.

This is how I feel in my mind: I am alone, a little boy lost in the woods, curled up in a fetal position. Crying out for help and someone to comfort me, but no one is there. No one understands. I have described this feeling before in other posts. But let me continue.

Perhaps friends and family don’t understand because I internalize so much. Perhaps it is because I don’t share much with a lot of people. Perhaps they don’t listen or want to know more about it. Perhaps I talk too much about it and they don’t want to hear it.

I find that even when people ask me how I am doing, I simply say “I’m doing fine.” Or, “good.” Even if on the inside I feel devastated. “Be strong,” I tell myself. Don’t admit weakness, that would be failure.

Failure? Or is that being human? Is there a difference? Or do I feel alone? Is it self-pity? Maybe it is a little of all of this.

Actually, it is a little of all of this.

I continue to ask myself, “Where is God in all of this?” Is He there? My faith takes a hit every time I sit here, but then it bounces back. As I sit here and think about it, I have to remember all of the times He brought me through the darkness, comforting me, coming to that little lost boy in the forest and holding me, rocking me gently in his arms. He whispers sweet encouragements in my ear. “Don’t worry my son, you are not alone. I am here with you, every step of the way.”

As my courage and strength regenerate in the loving arms of my heavenly Father, we stand together, and as a little boy holding his Father’s hand, we walk with confidence, no longer afraid as He leads me through the dark forest, out of the shadows of despair, nearer to the light at the edge of the forest. With each step I take, I leave my childlike stature and grow older with each step towards the light at the edge of the forest.

By the time I reach the edge of the forest and feel the warmth and beauty of the sun on my face, I am back to who I am today. Refreshed, reassured of who is in control. My Father squeezes my hand in a reassuring manner as if to tell me that it is all part of the plan. I nod in agreement, knowing that life is good. Knowing that when there are setbacks, and I get to the lonely, dark place in the cold forest, that I won’t be there long.

I step out into the green meadow, sunshine warming my face. I turn to say “thanks.” But He is not there. For a moment, I panic. Then the warmth of the sun fills me and I know, without a doubt, that He is part of me. He is within me and I have strength and courage to move forward.

I know I will make this same journey, many more times in my life. I do not look forward to the path I trod in, but the journey out of the darkness is refreshing.

My time here is done today. I am walking across the meadow filled with warmth and confidence, to fight this battle another day.

Makes me wonder. Am I really doing good? Or am I just saying it to make people think I am. What do you think?

Until next week.

Observations Part 15, May 10, 2011

Observations from the Oncology Treatment Room

Part 15, May 10, 2011

Tuesday, May 10, 2011. Another day in paradise, also known as “the chair” in the oncology treatment room, here in beautiful Cumming, Georgia. It is a beautiful day outside and the sun is shining with a few clouds gently floating by overhead as I glance out of the windows.

Today started out very much like last Tuesday, but with a different twist. When I left last week, I was given an appointment card with the date and time of today’s appointment. May 10, 8:15 a.m.

I left work in plenty of time, not wanting to be late. I stopped at the local convenience store and got my usual ICEE because I am here for the long haul with a 5 hour treatment and arrived for 8:15 appointment at 8:00 and signed in, ready and eager to get started. I was greeted by the usual receptionist and the “hospital” wristband placed upon my wrist, complete with my name, date of birth, account number, insurance information and my doctor’s name.

I took a seat in the waiting area, knowing I was early. There was absolutely no one else there at the time. I had the waiting room all to myself and sat myself down in from of the TV mounted on the wall and started watching FOX News channel that was already programmed on the TV.

About ten minutes later, two ladies entered the waiting room. The older lady sat and the younger lady went and registered at the window. There is a resemblance. It appears to be a mother and daughter. The younger one appears to be about 60 years old.

I check my watch, 8:10 a.m. I glance at the TV and then put my head down in my hands with my elbows on my knees. I drift off to sleep momentarily until I am awakened by the sound of an opening door. I turn my head and a man in a wheel chair enters the waiting room from outside, being pushed by a woman. They appear to be husband and wife.

She pushes him over to the registration window and he signs in. Then she pushes him over to another area of the waiting room and she sits next to him. I glance at my watch, 8:18. Hmm…. Must be running just a little late.

I sit back in the chair and watch a little more news on the TV. They are having a lot of coverage of flooding on the Mississippi River in Memphis and evacuations further south as the floodwaters continue south to the Gulf of Mexico. Even though I sit here in an oncology office, waiting for chemotherapy, I am thankful for the fact that I don’t have to worry about flooding at my house. I am blessed.

I look down at my watch. 8:30 a.m. Still no one has been called back for appointments or treatment.

Hmmm…..

Perhaps there was an emergency at the Hospital and the doctor had to run across campus to attend to it. Maybe. I don’t know.

I close my eyes one more time and again am woke up by the sound of an opening door. The nurse calls out the older lady’s name. The younger lady stands and helps her mother up and they slowly walk to the nurse and are greeted with a smile and a hello. They disappear behind the door as it closes.

I glance at my watch: 8:45 a.m. I thought my appointment was at 8:15 a.m. I get up and return to the registration window and asked to confirm my appointment time.

“Yes, your appointment was scheduled for 8:15.” the receptionist confirms.

Out of curiosity, I ask if there had been an emergency or something for them to be running that far behind. “Not that I know of, but they did come and get your chart a moment ago. It shouldn’t be much longer.”

I return to my seat and tell myself to be patient.

8:50 a.m. The door opens and a nurse steps out and asks for the other man in the room. The man in the wheel chair. His wife pushes him across the room to meet the nurse. They are greeted with a smile and a how do you do.

Another nurse walks out from the back through the same door prior to the couple going through the door. Since there was no one else in the room, I was guessing she would call my name.

“Mr. Carr!” came the gruff call. More like a drill sergeant, than a compassionate nurse.

I stand up and grab my ICEE and backpack and turn to meet the nurse. “Hi” I say as I walk towards her. No eye contact, no greeting, and no smile. She just turned and walked back to a scale and stood beside it. She gave me no instruction, but just stood there next to the scale and waited. Since I have been through the routine, I knew why we were there and I set my backpack and drink on the chair next to the scale and then stepped on to be weighed.

She adjusted the slide and recorded my weight. As I stepped off of the scale and turned to my left to pick up my drink and backpack, and without a word of instruction or even an acknowledgment, the drill sergeant nurse turned to the right and disappeared around a corner. Wow! That was less than professional.

So I walked to the corner where she turned and looked. There she was in an aggressive posture, arms folded across her chest, head down, foot tapping, like she had something better to do. When she saw me heading her way, she turned stepped into the exam room without a word.

“Put your stuff over there, and then sit in the chair,” she barked.

I sat my “stuff” on a chair next to the door and “sat” in the chair I was instructed to sit in, thinking this nurse got up on the wrong side of the bed today!

She pulled out the probe on the thermometer and without saying a word, shoved it into my mouth. She waited for the thermometer to beep, pulled it out and reported my temperature and recorded it in my chart without saying another word. Then she took the blood pressure cuff and again, without saying a word, wrapped it around my arm and took my blood pressure. Mechanically, she recited the blood pressure and recorded it on my chart.

“I need to take your pulse,” she said as she reached down for my wrist. A few seconds later she let it go and recited the pulse and recorded it.

“Do you have a port?” she asked. “Yes,” I replied.

She worked in silence as she prepared the sterile items in preparation for accessing the port.

“SNAP” was the sound heard in the room as she pulled her latex glove on her right hand and said, “I need your port.” I unbuttoned the top two buttons of my shirt and pulled it over to allow access to the port. She wiped it with an alcohol swab, snapped off her glove and returned to the counter and put on another glove and retrieved the needle.

She said “take a deep breath…. breathe out….” and as I exhaled she jammed the needle in. It didn’t hurt any worse than any other time, but it seemed cold and mechanical. No compassion there whatsoever!

She continued to draw blood through the port and then flushed the port and asked me one question. “Are you allergic to Heparin?”

“No.” I replied and she pushed the syringe of Heparin into the port, taped the plumbing to my chest and the access tube to my shirt and simply stated, “you can go back to the treatment room and sit anywhere there is an empty chair.”

And with that, our interaction was over. Whew. All this time I wondered if this rude treatment and behavior was related to my asking the receptionist about my appointment time. I don’t know.

People talk about remarkable customer service providers. This nurse was not a good ambassador of this facility, yet I hate to judge her because I do not know what kind of day she is having. I seriously consider taking any additional treatments at the infusion room in the hospital versus being treated like this again.

I am reminded of the song by Sawyer Brown, entitled “They Don’t Understand.”

The song talks about people passing judgment on others without knowing the circumstances that the other person(s) is going through. We all do this, everyday.

The first verse of the song states:

A mother riding on a city bus

Kids are yelling kicking up a fuss

Everybody’s staring not knowing what she’s going through

Somebody said don’t you even care?

Do you let ’em do that everywhere?

She slowly turned around, looked up and stared

She said Please forgive them

But they’ve been up all night

Their father struggled but he finally lost his fight

He went to heaven

In the middle of the night

So please forgive my children

The chorus:

(They don’t understand)

Everybody’s busy with their own situation

Everybody’s lost in their own little world

Bottled up, hurry it up trying to make a dream come true

(They don’t understand)

Everybody’s living like there ain’t no tomorrow

Maybe we should stop and take a little time

Cause you never really know what your neighbor’s going through

(They don’t understand)

A powerful song with a powerful message. I should pray for this nurse. As the song indicates, I do not understand her situation and should not be quick to judge.

So, after all that, here I sit in the oncology treatment room. In a recliner, covered in naugahyde (a term from the 1960’s – ask your parents if you don’t know what it is), semi-reclined with my feet up, keyboard on my lap. The Benadryl nap long finished. You would think I would be refreshed, but alas, having worked all night, I am still really tired. It is now 1:12 p.m. A long day here, after getting here at 8:00 this morning.

The room is still not filled, even today. A few more chairs with people, but at least five empty chairs I can see. Beside me, there is a woman receiving an IV treatment for an unknown cancer (at least to me it is unknown). Seated beside her in an electric wheelchair is her disabled daughter. My heart breaks for her and her daughter.

The daughter stares at her mother, making audible but indiscernible sounds, with a look of fear on her face to see her mother sit in the chair with a tube connected to her. Every time a nurse attend to the IV, the daughter gets upset and shows displeasure with the nurse working on her mother, not knowing what was happening was for her mother’s benefit.

I cannot imagine the fears she is having watching things she cannot understand. And the mother calms her each time. And I cannot imagine the pain and fears the mother has regarding the plight her disabled daughter will face if something happened to her.

And here I was feeling sorry for myself because of what I considered rude treatment by a nurse. I am ashamed of myself for what now seems very petty.

The nurse attends to the mother one more time. The daughter cries out in what appears to be fear and frustration, with some whimpering and crying. The mother comforts her.

And now, my treatment is over. I am waiting for another nurse to disconnect me and release me to go home.

She just checked and verified my treatment is complete. She will disconnect me, pull some chest hair from my body and let me go.

I leave you with the last verse of the song, I previously mention. Until next week.

A man hanging on a wooden cross

Giving everything to save the lost

Everybody’s staring not knowing what he’s going through

Somebody said you don’t have a prayer

If you were king you’d come down from there

The man just turned his head looked up and stared

He said please forgive them

For they have not seen the light

They’ll come to know me when I come back to life

Go to heaven, to make everything all right

So please forgive your children

(They don’t understand)

Everybody’s busy with their own situation

Everybody’s lost in their own little world

Bottled up, hurry it up trying to make a dream come true

(They don’t understand)

Everybody’s living like there ain’t no tomorrow

Maybe we should stop and take a little time

Cause you never really know what your neighbor’s going through

(They don’t understand)

A mother riding on a city bus

Kids are yelling kicking up a fuss

Everybody’s staring not knowing what she’s going through

Observations Part 14, May 3, 2011

Observations from the Oncology Treatment Room

Tuesday, May 3, 2011. I am going to talk about something I don’t think I have mentioned much over the years in writing about my cancer related experiences. Finances. Specifically regarding cancer treatment, deductibles and copays. So here goes.

Today has not been a good day. It all started Friday afternoon when the Oncologist’s business office called me about 4:00 p.m. and advised me that I needed to bring approximately $1,650.00 with me to my appointment on Tuesday.

Huh?

I understand I have an insurance deductible and co-pay amount. I also have a flexible healthcare spending account with enough money in it to pay that, with the option of them paying that directly to the provider. It didn’t matter. They said I needed to bring the money or a credit card or make some type of arrangement to pay them.

Oh….

Being the logical individual I am, I told them about the flexible health care account again and they said they could not be confident they would be paid from that account as it could go towards the PET scan from last week.

Point taken….

Ok, from past experience, I was told that Rituxan, the drug I am treated with, has a short life span and is generally mixed specific to the height and weight of the individual patient and cannot be used for another patient. Knowing this was Friday afternoon and the drug had already been ordered for a Tuesday morning infusion, I thought they would most likely have to pay for the drug and lose money since they already ordered it if I cancelled my appointment due to the financial concerns.

So I told the financial office, “If you have to have that much money on Tuesday, just cancel my appointment because I don’t have that much cash on hand.” I do have two kids in college, a mortgage, etc.

The lady in the finance office replied, “Oh. Um, there should be no need for that.”

My reply, “If you need that much money, then cancel my appointment. I have made payments to you in the past and it was never an issue, but now for some reason it seems to be. So cancel my appointment.”

Her reply, “Well, let me have the social worker call you and see if he can find some assistance for you. But it is after 4:00 on Friday afternoon, so I’m sure he won’t call you until Monday.”

“So what can he do?” I asked.

“He has several different programs to help people in financial need.” She replied.
I work full time and generally don’t qualify for any financial aid. I know this from having two kids in college and having to fill out all of the forms for student aid that they never qualify for. Those applications should include questions like “Do you or an immediate family member have any medical condition that significantly reduces your household income?” But they don’t.

So I left the conversation with the finance office saying, if you need the $1650 +/- on Tuesday, cancel my appointment. She left the conversation saying she would have the social worker call me.

Monday came and before I got home from work the social worker from the oncology office called and left a message on my house phone voice mail. After I got home and listened to the message, I returned the phone call and as luck would have it, got his voice mail. So I left a message for him, saying I was returning his call.

An hour later, there was no return phone call from the social worker. I was ready for bed as Sunday night into Monday morning is the hardest night on a third shift employee. I decided to try one more time, so I called the social worker again.

This time, I was successful in reaching this gentleman. The social worker began by telling about all of these wonderful programs and grants to assist people with their treatments. Then he told me about the qualifications.

Oops.

I make too much money to qualify for that one. Why don’t they ever take into consideration the fact that I have two kids in college and don’t have the disposable income that some people do? Oh well.

The social worker did tell me about a couple of grants that were available that had no income requirements, but were smaller dollar amounts. First of all, the Leukemia & Lymphoma Society. They have an annual $150 grant that can be reapplied for each June. He had a completed application and all I had to do was sign it and wait.

He also indicated the oncology office had set up a foundation that offered a $200 one time grant for patients and that it could be used to offset other household bills to free up money for medical bills. He indicated it could not be used to pay the oncology bill directly because it would appear they are donating the money to themselves. As a result, he made out a check for $200 to my mortgage company.
He also told me he would talk with the finance department and see about getting a payment plan setup for me and would call me back. I advised him that I could pay my deductible, but the balance would have to be billed so I can use the flexible health care account. He said he would see what he could do with the finance department and call me back.

I advised if that was acceptable, to cancel my appointment for Tuesday. He said that should not be necessary. He then offered an opportunity to have the treatment given at the hospital. The hospital doesn’t bill as quickly and their repayment program is not as stringent as the clinic’s. My oncologist works for the hospital also so my “treatments” could go uninterrupted.

I interpreted that as a last ditch effort to use the drugs they already had ordered for me to get, but were afraid they would have to eat the expense if my appointment was cancelled. Again I told the social worker the same thing, that if I was unable to use the healthcare account savings, then I needed to cancel the appointment.

About 8:30 p.m. on Monday night, the social worker called me and advised that they had come to an agreement, that if I paid the balance of my deductible at Tuesday’s appointment, they would bill the balance and I should be able to use the healthcare account to pay the balance. OK. Appointment will be kept.

So I arrived this morning, paid my $673.00 as the balance owed on my deductible for the year and met briefly with the social worker. He handed me a check for $200 made payable to my mortgage company. He advised me to write my account number in the memo line and include it with my next house payment. He also had a completed application for the Lymphoma Society and asked me to sign and date it. He said he would mail it.

In all honesty, I feel guilty asking for financial help. I am employed with benefits. I can pay my bills, even though it may take a few months to pay off the $1,000 copay, I can still pay it. I guess in this case, I did not ask for assistance, it was thrust upon me. I will continue to donate to worthy causes, such as the American Cancer Society and the Leukemia & Lymphoma Society. Both are excellent organizations that help patients and lead in the research for cure and treatment in various cancers.

So back to the day at hand and meeting with the doctor and treatment.

I completed the regular office routine, height, weight, pulse, blood pressure, temperature. My temperature was low and my blood pressure was high. I told the nurse my blood pressure was high due to frustrations from working with their financial office and payment arrangements. She said, “Say no more.”

My temperature seemed low because of the ICEE drink I had stopped and bought at the convenience store on my way in, since I was going to be there for several hours. I had taken a drink just a minute before the thermometer went in my mouth and the cool rush of the ICEE had lowered the temperature inside my mouth.

The nurse chastised me for not having my port flushed regularly. It had not been flushed since the last treatment in November of last year. But hey, it still works, what’s the big deal? It has been in almost four and a half years. I know I should I have it flushed more often, don’t yell at me too much. At least it will be flushed over the next four weeks!

So the nurse finishes accessing my port, drawing blood and putting that huge tape patch over the port, successfully taping hundreds of strands of chest hair to the bottom of the tape, laughing and smiling, saying she is thankful she is not the one to pull it off when I am done this afternoon. Lucky her.

The nurse leaves, saying the doctor should be with me shortly. Usually it is the PA (physician assistant) that follows up, but since there are PET scan results to go over, the doctor will see me today.

I am exhausted, having worked all night. I drift in and out of sleep while waiting for the doctor. I glance at my watch. It has been an hour since I first entered the exam room. Sitting in there, all alone, I feel empty. Numb. Waiting and wondering if today the doctor will tell me things are great, no sign of disease. Or something else.

I am prepared, I think, to handle either option, as I have done so many times before.

A tear rolls down my left eye. I wonder where that came from. “I am stronger than that,” I tell myself. I take a deep breath and wipe the tear from my face and sit up straight. A few minutes later, the doctor comes into the exam room, chart in hand, reading as if for the first time.

“Let’s see here,” he says after a brief ‘how do you do’ exchange. “It says here there is no significant activity, that’s good.” I hold my breath. No significant activity? I think I need a better explanation.

He keeps reading.

“There is some take up in the area of the left ureter, in the same area where we found an issue in 2009. It is not large enough to cause great concern, but we do want to continue to monitor the area.”

Someone take the sledge hammer off of my heart. Please.

Once again, that feeling of despair creeps in. Depression. Frustration. Reality. Whatever you want to call it. I want to curl up and cry. Inside I am weeping uncontrollably. Outside I am numb and pleasant.

After a few moments of awkward silence, the doctor says, “Let’s get you back and get started.” With that we walk from the exam roomor this disease, a longing to be free from cancer, tears, fears, then hope and peace.

I am still here and surviving. I have friends and family that have not been so lucky. I still function and do everyday tasks, like mowing the lawn and enjoying that fresh cut smell of grass. Life is good. I have to get over my self-pity, deserved or not, doesn’t matter. If I give up, I lose. It is that simple. Have faith, stay strong.

The nurse hooks up the premeds and gives me some Tylenol. Ten minutes later, the IV Benadryl starts. My temporary drug induced sleep is welcome at this time. Clear my mind of all the worries and cares this day has brought, from the financial worries to health concerns. Sleep….

I wake up about an hour later, still groggy from the Benadryl. For the first time, I gaze across the room. For the first time in four years of sitting in this treatment room, there are more empty chairs than patients. And there are no familiar faces. Except the nurses.
Observations from the Oncology Treatment Room

Tuesday, May 3, 2011. I am going to talk about something I don’t think I have mentioned much over the years in writing about my cancer related experiences. Finances. Specifically regarding cancer treatment, deductibles and copays. So here goes.

Today has not been a good day. It all started Friday afternoon when the Oncologist’s business office called me about 4:00 p.m. and advised me that I needed to bring approximately $1,650.00 with me to my appointment on Tuesday.

Huh?

I understand I have an insurance deductible and co-pay amount. I also have a flexible healthcare spending account with enough money in it to pay that, with the option of them paying that directly to the provider. It didn’t matter. They said I needed to bring the money or a credit card or make some type of arrangement to pay them.

Oh….

Being the logical individual I am, I told them about the flexible health care account again and they said they could not be confident they would be paid from that account as it could go towards the PET scan from last week.

Point taken….

Ok, from past experience, I was told that Rituxan, the drug I am treated with, has a short life span and is generally mixed specific to the height and weight of the individual patient and cannot be used for another patient. Knowing this was Friday afternoon and the drug had already been ordered for a Tuesday morning infusion, I thought they would most likely have to pay for the drug and lose money since they already ordered it if I cancelled my appointment due to the financial concerns.

So I told the financial office, “If you have to have that much money on Tuesday, just cancel my appointment because I don’t have that much cash on hand.” I do have two kids in college, a mortgage, etc.

The lady in the finance office replied, “Oh. Um, there should be no need for that.”

My reply, “If you need that much money, then cancel my appointment. I have made payments to you in the past and it was never an issue, but now for some reason it seems to be. So cancel my appointment.”

Her reply, “Well, let me have the social worker call you and see if he can find some assistance for you. But it is after 4:00 on Friday afternoon, so I’m sure he won’t call you until Monday.”

“So what can he do?” I asked.

“He has several different programs to help people in financial need.” She replied.
I work full time and generally don’t qualify for any financial aid. I know this from having two kids in college and having to fill out all of the forms for student aid that they never qualify for. Those applications should include questions like “Do you or an immediate family member have any medical condition that significantly reduces your household income?” But they don’t.

So I left the conversation with the finance office saying, if you need the $1650 +/- on Tuesday, cancel my appointment. She left the conversation saying she would have the social worker call me.

Monday came and before I got home from work the social worker from the oncology office called and left a message on my house phone voice mail. After I got home and listened to the message, I returned the phone call and as luck would have it, got his voice mail. So I left a message for him, saying I was returning his call.

An hour later, there was no return phone call from the social worker. I was ready for bed as Sunday night into Monday morning is the hardest night on a third shift employee. I decided to try one more time, so I called the social worker again.

This time, I was successful in reaching this gentleman. The social worker began by telling about all of these wonderful programs and grants to assist people with their treatments. Then he told me about the qualifications.

Oops.

I make too much money to qualify for that one. Why don’t they ever take into consideration the fact that I have two kids in college and don’t have the disposable income that some people do? Oh well.

The social worker did tell me about a couple of grants that were available that had no income requirements, but were smaller dollar amounts. First of all, the Leukemia & Lymphoma Society. They have an annual $150 grant that can be reapplied for each June. He had a completed application and all I had to do was sign it and wait.

He also indicated the oncology office had set up a foundation that offered a $200 one time grant for patients and that it could be used to offset other household bills to free up money for medical bills. He indicated it could not be used to pay the oncology bill directly because it would appear they are donating the money to themselves. As a result, he made out a check for $200 to my mortgage company.
He also told me he would talk with the finance department and see about getting a payment plan setup for me and would call me back. I advised him that I could pay my deductible, but the balance would have to be billed so I can use the flexible health care account. He said he would see what he could do with the finance department and call me back.

I advised if that was acceptable, to cancel my appointment for Tuesday. He said that should not be necessary. He then offered an opportunity to have the treatment given at the hospital. The hospital doesn’t bill as quickly and their repayment program is not as stringent as the clinic’s. My oncologist works for the hospital also so my “treatments” could go uninterrupted.

I interpreted that as a last ditch effort to use the drugs they already had ordered for me to get, but were afraid they would have to eat the expense if my appointment was cancelled. Again I told the social worker the same thing, that if I was unable to use the healthcare account savings, then I needed to cancel the appointment.

About 8:30 p.m. on Monday night, the social worker called me and advised that they had come to an agreement, that if I paid the balance of my deductible at Tuesday’s appointment, they would bill the balance and I should be able to use the healthcare account to pay the balance. OK. Appointment will be kept.

So I arrived this morning, paid my $673.00 as the balance owed on my deductible for the year and met briefly with the social worker. He handed me a check for $200 made payable to my mortgage company. He advised me to write my account number in the memo line and include it with my next house payment. He also had a completed application for the Lymphoma Society and asked me to sign and date it. He said he would mail it.

In all honesty, I feel guilty asking for financial help. I am employed with benefits. I can pay my bills, even though it may take a few months to pay off the $1,000 copay, I can still pay it. I guess in this case, I did not ask for assistance, it was thrust upon me. I will continue to donate to worthy causes, such as the American Cancer Society and the Leukemia & Lymphoma Society. Both are excellent organizations that help patients and lead in the research for cure and treatment in various cancers.

So back to the day at hand and meeting with the doctor and treatment.

I completed the regular office routine, height, weight, pulse, blood pressure, temperature. My temperature was low and my blood pressure was high. I told the nurse my blood pressure was high due to frustrations from working with their financial office and payment arrangements. She said, “Say no more.”

My temperature seemed low because of the ICEE drink I had stopped and bought at the convenience store on my way in, since I was going to be there for several hours. I had taken a drink just a minute before the thermometer went in my mouth and the cool rush of the ICEE had lowered the temperature inside my mouth.

The nurse chastised me for not having my port flushed regularly. It had not been flushed since the last treatment in November of last year. But hey, it still works, what’s the big deal? It has been in almost four and a half years. I know I should I have it flushed more often, don’t yell at me too much. At least it will be flushed over the next four weeks!

So the nurse finishes accessing my port, drawing blood and putting that huge tape patch over the port, successfully taping hundreds of strands of chest hair to the bottom of the tape, laughing and smiling, saying she is thankful she is not the one to pull it off when I am done this afternoon. Lucky her.

The nurse leaves, saying the doctor should be with me shortly. Usually it is the PA (physician assistant) that follows up, but since there are PET scan results to go over, the doctor will see me today.

I am exhausted, having worked all night. I drift in and out of sleep while waiting for the doctor. I glance at my watch. It has been an hour since I first entered the exam room. Sitting in there, all alone, I feel empty. Numb. Waiting and wondering if today the doctor will tell me things are great, no sign of disease. Or something else.

I am prepared, I think, to handle either option, as I have done so many times before.

A tear rolls down my left eye. I wonder where that came from. “I am stronger than that,” I tell myself. I take a deep breath and wipe the tear from my face and sit up straight. A few minutes later, the doctor comes into the exam room, chart in hand, reading as if for the first time.

“Let’s see here,” he says after a brief ‘how do you do’ exchange. “It says here there is no significant activity, that’s good.” I hold my breath. No significant activity? I think I need a better explanation.

He keeps reading.

“There is some take up in the area of the left ureter, in the same area where we found an issue in 2009. It is not large enough to cause great concern, but we do want to continue to monitor the area.”

Someone take the sledge hammer off of my heart. Please.

Once again, that feeling of despair creeps in. Depression. Frustration. Reality. Whatever you want to call it. I want to curl up and cry. Inside I am weeping uncontrollably. Outside I am numb and pleasant.

After a few moments of awkward silence, the doctor says, “Let’s get you back and get started.” With that we walk from the exam room to the treatment room. I sit down, my mind racing in so many different directions. All of the same emotions flooding my body: hate for this disease, a longing to be free from cancer, tears, fears, then hope and peace.

I am still here and surviving. I have friends and family that have not been so lucky. I still function and do everyday tasks, like mowing the lawn and enjoying that fresh cut smell of grass. Life is good. I have to get over my self-pity, deserved or not, doesn’t matter. If I give up, I lose. It is that simple. Have faith, stay strongnadryl starts. My temporary drug induced sleep is welcome at this time. Clear my mind of all the worries and cares this day has broug

I wake up about an hour later, still groggy from the Benadryl. For the first time, I gaze across the room. For the first time in four years of sitting in this treatment room, there are more empty chairs than patients. And there are no familiar faces. Except the
I stop fighting the exhaustion of having worked all night and the lingering effects of the Benadryl and fall back to sleep.

I wake up and take a look at my IV bag of Rituxan. About fifteen minutes left. Where did the day go? It is 3:00 p.m.

I am sorry that I did not make any “observations from the oncology treatment room” today. My mind was pre-occupied. I’ll try to do better next week. I stop fighting the exhaustion of having worked all night and the lingering effects of the Benadryl and fall back to sleep.

I wake up and take a look at my IV bag of Rituxan. About fifteen minutes left. Where did the day go? It is 3:00 p.m.

I am sorry that I did not make any “observations from the oncology treatment room” today. My mind was pre-occupied. I’ll try to do better next week.

PET Scan….

Positron Emission Tomography.  Or PET Scan.  In an unofficial definition it is where someone shoots radioactive sugar water into your blood stream and they make you sit for an hour for it to circulate and then place you on a table and slide you through this big electonic donut shaped thing.

More technically speaking it is:  “A PET scan allows the physician to distinguish between living and dead tissue or between benign and malignant disorders. Since a PET scan images the biology of disorders at the molecular level, it can help the physician detect abnormalities in cellular activity at a very early stage, generally before anatomic changes are visible.” as described on the web site: http://www.petscaninfo.com/zportal/portals/pat/petct_basics.

The sugar water, or glucose as the more scientific name, is mixed with a radioactive element.  It is mixed with the sugar water because cancer cells absorb the sugarwater very easily and quickly.  So the radioactive material tends to concentrate in tumors so to speak.  Then they run you through the donut shaped imaging machine, which is capable of CT scans as well and a CT and PET scan is usually done together for better imaging results.

The gamma radiation given off by the concentration of the sugar water in a tumor lights up on the scan making the location and size of many tumors very easy to locate.

I am telling you all this because I had the pleasure of having yet another PET scan this morning.  I go to the oncologist for follow up and to start treatments again next week.  One of the “rites of spring” in my life.

Regardles of the results, its all good.  Meaning, it is all good.  Either way.  It is good.  Not knowing is the issue most people deal with.  The fear of the unknown is worse than dealing with the known.

After twenty years of being poked, prodded and cut on, I guess I am numb to it for the most part.  I could say I am used to it, but I don’t think that is an adequate description.  I don’t really mind going in and getting the IV started, as long as the technician is competent and can find a good vein.  Let me re-phrase that.  “as long as the technician can access a vein on the first try.”

I can’t blame the technicians for my scarred veins.  After twenty years and regular sticks for blood for this or blood for that, there is a lot of scar tissue that the needles just won’t penetrate.  It is to the point where most of them go straight to the wrist or back of the hand.  That area is definitely more painful than the bend in the elbow.  But hey, if it works and they only stick me once I can endure.  I close my eyes and clench my teeth and soon it is over. Most of the time.

After working all night, it alows me to take a nap while laying on the table being slid in and out of the donut.  The scan process takes about an hour.  The prep time is about an hour and a half.  But like I said, it is all good.

A lot of emotions are running high this year.  A lot of things going on and I don’t want to slow down.  This will slow me down a little.  Not a lot, but a little.

But hey, life is good.  I am a SURVIVOR.  Survived for more than 20 years now.  That is an accomplishment I guess.  I have lost friends and family to cancer, but I have survived.  If only to be an encouragement to others, that is enough.  There is hope, there is advancements, there is grace. There is God’s comforting arms surrounding me.

Regardless of the gloom and dispair I sometimes feel when dealing with cancer year after year, there is still comfort in knowing God is in control and He has blessed me.

Comfort in knowing my daughter told me she wanted to be a doctor, an oncologist.  She said I have inspired her.  So if she touches one life in the future or finds a cure or makes a cancer patient smile, it has all been worth it.

So sit back and relax because next week I return to the Oncology Treatment Room and story continues.  See you there.