Caregiver is a word I really never thought about or even used in my daily vocabulary before TJ’s diagnosis.  Suddenly, in the blink of an eye, I became a caregiver.  I was thrust into the role of scheduling doctor appointments, taking notes when the doctors spoke, administering medication on schedule and noting side effects.  Being a caregiver to someone with a serious illness is so much more than making lunch and handing out pills.  You become that person’s emotional support as well as the brunt of their emotional outbursts.  The responsibilities at times seemed endless and it is mentally and physically exhausting.

Many do not have a chance to prepare for the role of caregiver.  I did not get to read and study up on TJ’s diagnosis. I had to learn as we went along.  The pressure was on me to ask all the right questions, to choose the treatment path and hardest of all…to be positive.  TJ’s emotions were in overdrive because of the steroids, mine were in overdrive because of the fear of losing him.  He was able to act out while I had to put on a happy face and tell him it was OK.  I had to sound truthful when telling him he looked good.  I had to hide and find a little bit of time to myself to cry without him seeing me.  While he saw the beauty in every sunset we watched those last few months together, I saw it as a countdown to not having him to watch a sunset with.  Yes, we joyfully counted down chemo sessions and had some laughs with the nurses and others in the chemo room, but it was all too bittersweet.  I felt as though time was slipping through my fingers and there was nothing I could do about it.

Often times the caregiver is the unsung hero in the battle against cancer.  During TJ’s illness many people inquired about how he was doing, both physically and mentally, but they often did not ask about my wellbeing.  At the time my focus was on TJ too and I never thought anything of it, but looking back I realize how hard it was on me also.  Cancer takes its toll on not only the patient but family members and friends as well.  When someone beats cancer they are called a “survivor” and yes, they truly are, but so are those close family members and friends that supported and helped them through their battle.  I know the patient/survivor realizes the role the caregiver and others played in their battle, but the outsider is completely unaware that it takes a whole battalion to make one survivor.

In the instances where the cancer patient does not survive there are very few who even stop to think that the caregiver is left feeling distraught and wondering if he/she did all they could.  I talk with many widows, some of whom are cancer widows and many suffer from guilt that stems from the care giving process.  There is an overwhelming sense of relief that it is over, which produces guilt, but at the same time many feel guilty for cross words that were spoken during an illness.  As a caregiver for a loved one you do things for that person that are only spoken of in private with others who have “been there” too.  A caregiver rarely complains about their role, even in the worst of times, but it is a role that stays in the mind of that person for eternity.

Being TJ’s caregiver was the hardest thing I have ever done in my life.  I also feel honored and privileged to have been able to help him when he was most vulnerable.  It was our love for each other that became our weapon against cancer.  TJ thanked me many times for sticking by him and caring for him.  We lived life as full as we could those last few months and enjoyed every minute of our time together.  We both knew time was limited and we were determined to express our love unconditionally during the time we had left.  No, I did not choose to be a caregiver, but I am grateful for the experience and the opportunity.  It strengthened me and taught me compassion.  I learned to simplify my life.  It taught me to appreciate the simple things, the moments that may not have meant anything before.  Most importantly, I learned that through nearly 16 years of ups and downs in our relationship TJ & I loved each other very, very much.

One day out of the blue TJ said to me, “Thank You”. I said, “For what?” He then said words I will never forget, “Because of you I have known what it is like to be truly loved.”

To care for the ill without prejudice you must forget who you are, listen to those lying before you in sorrow, and think, “I can be of help”. ~ Unknown

Monday, before TJ was released from the hospital, we met with the Radiation Oncologist.  I am not sure if I was numb by then or just exhausted, but I don’t remember much of what he told us.  What I do remember is that radiation was scheduled to last 3 weeks, 5 days a week and they have appointments available from 5 am to 9 pm.  TJ and I were thrilled at the thought of getting a 5 am slot.  I could take him and get him home and still get to work by 7 am.  My boss was already aware of what was happening, and very understanding that I would be missing work, but to not have to would be great.

Monday afternoon when TJ and I got home I witnessed the first of numerous emotional outbursts he was to have.  Not only do steroids make you hungry and filled with energy they make you emotional, especially with the high dose he was taking. So the steroids coupled with the fact that he was facing his own mortality made him an emotional wreck.  When we arrived at home TJ greeted the very excited dogs and then leaned against the kitchen counter, looked at me, and began crying.  Just seeing him cry immediately brought tears to my eyes also and as I headed toward him he said, “I will never work again”.  This revelation was tearing him apart.  TJ was a hard worker and enjoyed working.  He had gone from framer to superintendent to crane operator in his life.  Now, because of the brain tumors he was at risk of seizure and therefore unable to drive.  Once again, I didn’t know what to say to him so I just held him tight as his tears soaked my shirt.

Thursday was our first appointment at the cancer center.  It was with the radiation department for fitting TJ’s mask that he would wear during his treatments in order to keep his head still.  Walking up to the doors of the cancer center was overwhelming for me.  Seeing the word CANCER in giant letters, being there with TJ, wondering if he was going to survive this and knowing he probably wouldn’t was almost more than I could handle.  When we entered through the big doors the waiting room was packed.  Some of the patients were easy to pick out, others looked remarkably well.  Those that looked remarkably well were encouraging to both TJ and I.  TJ signed in and we took a seat, he held my hand while we waited.  Holding hands was solidarity to us; we were in this together.

When his name was called I was told I could come back with him.  I was directed to yet another waiting room.  This room was very small and there were only about 8 of us in there.  Everyone was chatting as though they knew each other and I felt very much like an outsider sitting in a room where I didn’t belong.  I did not join in the conversation as I still was finding it hard to believe I was at a cancer center.  I listened to them talk about their loved one’s cancer, how many treatments they had had and how many were left to go.  As I continued to eavesdrop I realized they did know each other; they met here 5 days a week waiting for their loved ones to finish their radiation treatment.  They all have at least one thing in common….a loved one with cancer.  I looked at their faces, young and old, full of worry and concern.  As I looked deeper I saw the fear and exhaustion that cancer causes.  It deeply affects the family members as they move into the role of caregiver.

The conversation then shifted to a member of this group that was no longer there.  His wife had passed before she finished her radiation treatments.  I thought to myself, this is why we have this appointment time, because someone did not survive.  They then spoke of her cancer. “It had metastasized to her brain”. Another said, “Yes, he told me she had 4 lesions on her brain”. Then another said, “Yes, once it is in your brain you are done, you just don’t make it”.  I got sick to my stomach. I felt a huge lump in my throat.  I just knew I was going to burst out in massive sobbing at any moment.  How could they talk like that in front of me?!  I hated that place, I hated all those people and I wanted to be anywhere but there at that moment.  I didn’t think I could keep the sobbing inside much longer and then TJ appeared.  TJ had that big smile on his face that he was known for and happily asked me if I was ready to go home.  I leaped from my seat and hugged him as tight as I could.  Just feeling his arms around me calmed my stomach and the sobs welling up inside of me.  After a moment he pulled away, looked at my face and asked if I was OK.  I shook my head yes, still afraid of the sobs escaping and we walked, hand in hand, out of the cancer center.

I arrived at the hospital early Sunday morning for TJ’s biopsy.  As is the standard he could have no food or drink until after the procedure.  TJ, of course, was complaining about being hungry and wanting a cup of coffee.  He was on a very high dose of Dexamethasone via IV so was ravenous.  For those that don’t know, Dexamethasone is a steroid and will make you very hungry and give you an enormous amount of energy.  His biopsy was scheduled for 8:00 a.m. so it wasn’t long before they began prepping him to take downstairs.

The biopsy was to be performed in the outpatient surgery area and on call nurses were called in to assist.  Because it was a Sunday and no other outpatient procedures were scheduled they let me go into the room with him where the biopsy was to be performed.  TJ, being the outgoing guy he is, combined with the steroids, was happily chatting away with the nurses.  When his pulmonologist arrived I was pointed toward the waiting area and he told me he would come and talk to me when the procedure was complete.  If you have ever been in an outpatient waiting area you are aware that it is usually very crowded and busy.  On Sunday there was not one other soul in the waiting room with me.  I think this was the first time I really thought about what was happening.  I had not told any friends about this, only his Mom and my sister.  I assumed his Mom had told other family members and that my sister called my brother, but at this point I was alone.  A waiting room in a hospital is a hard place to be, but sitting there all alone wondering about our future was overwhelming for me.  In the past 36 hours I had too many people look at me with that look of pity and simply say, “I’m sorry”.  If I was already tired of hearing this how was it going to be when my friends and extended family began doing the same thing.  I began to seriously consider the repercussions of losing TJ…financial, mental, how his dog would react, my future…my mind was racing with very scary thoughts.  Looking back I think this was my first anxiety/panic attack.  I had never been so terrified in my life and I never felt so completely alone.  I was alone and with a very uncertain future.

At the precise moment that I was thinking it was a good thing I am in a hospital because my heart is racing and I think I might pass out the doctor walked in.  I sat up straight, blinked away the tears, swallowed hard, took a deep breath, smiled and with a steady voice asked, “How did it go?”  He explained to me that because of the large amount of steroids in TJ’s system he could not get him to sleep for the procedure.  He had given him more than the normal amount of anesthesia and TJ was still talking away.  He finally gave up, told TJ to stop talking and stuck the scope down his throat anyway.  TJ handled it well and he thinks he got enough of a sample to send to pathology.  We laughed about TJ talking so much and I thanked him for coming in on a Sunday to perform the procedure.  He then put his hand on my knee and said to me, “You really need to call Dr. E. to prescribe you something to help you get through this; it is reasons like this that those types of drugs are intended for.”  WHAT?! I thought I was presenting a strong front, I thought nobody could tell I was losing it on the inside, I am a strong person, and I don’t need drugs to get through this.  Turns out I did.

When TJ and I got back to his hospital room he ordered some lunch and then wanted to go outside.  Being cooped up inside was driving him crazy.  I asked the nurses if we could go for a walk outside and they would only let TJ go with a wheelchair because of the anesthesia he had in his system.  When they brought the wheelchair TJ grabbed it and began pushing it out the door only stopping to ask me, “Are you coming?”  The Dexamethasone was clearly dominate over the anesthesia and as we walked past the nurses station they all began laughing and TJ asked if any of them would like a ride.  As we boarded the elevator I could still hear the nurses and doctors laughing.  Once on the elevator TJ put his arm around me, hugged me tight, told me how much he loved me and then said, “sit down, I know this has been hard on you, let me push you outside for a break.”  I sat down and we exited the elevator laughing.

I stayed with TJ until they got him in a room on Friday night so I didn’t get home until after 11:00 pm.  Needless to say I didn’t sleep much that night.  I was back at the hospital by 7:00 am on Saturday morning.  Before I left I called my sister in Indiana to tell her about TJ’s diagnosis.  Somehow, in between my screaming sobs, she was able to understand what was happening.  I also asked her to call our brother, I just couldn’t mentally handle telling him or anyone else for that matter.  Talking about it meant accepting it and I wasn’t ready to accept it.  When I got to TJ’s room he was wide awake and looked good.  I soon realized it was due to the Dexamethasone he was on for the swelling in his brain.  We chatted and drank coffee while waiting for his breakfast, which, because of the steroids, he practically swallowed whole.

The first doctor we met with was a pulmonologist.  He told us he was scheduling a biopsy of the spot in his lung for Sunday.  It was their belief that his cancer started in his lung and has metastasized to his brain.  They needed to know what kind of cancer it was in order to know how to treat it.  This type of biopsy was normally an outpatient procedure where they go through his mouth to get a piece of the lung tissue to send to pathology.  They also had to confirm that it was cancer.  We liked him and he was also a personal friend of our primary care physician whom we just adore.  We felt good after talking to him, and then in came the oncologist.

The oncologist said after the biopsy he would start with brain radiation and follow that with chemotherapy to go after the spot on the lung.  He did not want to tell TJ his prognosis but TJ insisted he tell him. The doctor sat down in a chair next to TJ’s hospital bed and said to us “This is exceptionally difficult for me because you & I are the same age. There is a less than 5% chance you will be around a year from now. Make sure your affairs are in order.” That took my breath away like no other moment in my life has or ever will. Somehow I managed to eek out a “thank you” to the doc as he walked out the door.  Thanks for what I don’t know, but at the time it seemed an appropriate thing to say. TJ & I both were so stunned that neither one of us could speak or even cry. I curled up in bed with him and for a good 30 minutes nothing was said. What is there to say at that point? We knew it was cancer and we knew it was bad, but we kept telling ourselves that people beat the odds all the time, but that was before we were told the odds we were up against. When I finally was able to breathe again I got out of his hospital bed and went over to the window, I still did not know what to say to him.

We ended up spending the afternoon talking about our “affairs”.  I intermittently burst into tears and so did he.  I was 43 and he was 48, we thought we had our whole lives ahead of us and now we are talking about the possibility of him being gone in a year?  He let me know he was going to fight with all he had and that he was going to be in that 5%.  I was devastated, I was scared and my heart was breaking.  I could not figure out what we had done in our lives to deserve this. 

We had 3 dogs and numerous horses as well as goats that all needed to be fed but I didn’t want to leave him.  I needed to be with him every minute that I could.  Finally, sometime after 10:00 pm I knew I needed to get home to take care of the animals so I headed for home with a heavy heart.  The dogs had been locked in the house all day so of course I had some “accidents” to clean up when I got home (thank goodness for tile floors). Obviously I could not be mad at them but while I was mopping up urine I said aloud, “this is just small stuff, not important, and in the big picture it is all small stuff, don’t sweat the small stuff”. There was a time before that I would have been crazy hysterical about the dogs peeing in the house but not anymore. When TJ came home from the hospital I told him about that incident. From that point on there were countless times that things happened and we would both just look at each other and say “it’s just small stuff, don’t sweat the small stuff!”