When I entered the world of cancer as my wife Annie’s caregiver, quite frankly, I didn’t have a clue that this cancer world would be so complex. And of course, one would think the natural trend of thought would be more or less doom and gloom. Not much laughter, and very little happiness. Well as it turns out, that couldn’t be further from the truth. Cancer is a very large emotional puzzle with many pieces, some pieces are interlinked, fitting snugly, and many just simply don’t fit at all. It’s broken, and therein lies the problem.
Life Altering Words Of The Puzzle
An interlinked puzzle which has the snug fit will likely contained these two words at diagnosis–“Fortunate & Not Aggressive.” And that’s very important to a cancer patient and their loved ones. If you’re fortunate and your cancer is not aggressive, you will probably enjoy the fruits of a sweet remission. And that’s true in most cases.
As time went by and Annie and I spent more and more time at the cancer center or in the hospital, it became apparent to me that the fortunate patients were living their lives as they always did. Yes, there would have been a fear factor there, but they were still able to enjoy many of the things they always enjoyed.
When the pieces of the puzzle simply don’t fit at diagnosis, you may hear these two words–“Unfortunate & Aggressive.” “I need to get started on treatment of this poor unfortunate lady.” That statement was contained in Annie’s oncologists notes from the day of her diagnosis. He further stated that her blood cancer, multiple myeloma, was very aggressive. In other words, her fate had already been sealed. Also on that day, these words were spoken and really do speak to the nature of an aggressive cancer…”I don’t have two weeks, I don’t even have two days!” That statement was made by Annie’s oncologist in response to being told she could start the clinical trials in two weeks. Unfortunately she needed her chemotherapy now, and once she started her treatment she would no longer be eligible for the clinical trials. And that’s how it was.
Here’s my analogy for the fortunate verses the unfortunate multiple myeloma patient.
When Annie was first diagnosed with multiple myeloma, there was a lady at the cancer center that had just been diagnosed with it too. The other lady was much like Annie, probably in her late fifties, well cared for, and seemed healthy.
We met her a year later in the treatment room, a few weeks after they both had their stem cell transplants. That day when we arrived at the treatment center I pushed Annie into the room in her wheelchair, with badly diseased and many broken bones, some put back together with wire. When the nurse took us over to our treatment spot, Annie recognized the lady immediately. She looked happy, well, and was in remission. Annie, on the other hand, looked happy, but unwell, and with the diseased bones, was disabled. Annie was in remission too. Annie cancer was aggressive, her friend’s wasn’t. There’s probably a million ways I could say that, but, fortunate and unfortunate is all I really need to say.
While I was sitting there with those two ladies, I could not help but draw the parallel between the two. I’m pushing Annie around the cancer center in a wheelchair, while the other lady has a cell phone in one hand and her car keys in the other. Such a stark difference. But this sort of encounter allowed the humanity in Annie to shine through, and this was the beauty of Annie, things like that never seemed to bother her. She had accepted her fate, but was not going down without a fight, and always happily cheering for the survivors.
It would have been reasonable for Annie to have left the room that day and feel a sense of self pity. But that wasn’t the case. She was very happy to see her cancer friend doing so well. As for me, I was a bit jealous. I wished Annie could of had a normal remission too, and not always sick.
Short stories of Unfortunate Patient
One afternoon while Annie was laying in her hospital bed in the center of our living room, I asked her if she would stay in the bed, while I went to the market and picked up some staple food. She said she would, but I could tell by her smiling eyes she was fibbing. As I started to walk away, I quickly turned around facing her and said, you’re fibbing aren’t you. She just laughed and said, go on. With her badly diseased and damaged bones, she needed me with her when she got out of bed. Of course, this was just another sad reality of cancer—sometimes the caregiver may have to leave the home for just a bit.
Annie and I were different. We strived to be independent of everyone, and for the most part we were. Annie virtually had no immunity to germs on a daily basis. We had to be careful around others, and for the most part children were off limits as they carry around so many childhood germs. Dr. Tom Moore, later on in Annie’s illness was nominated to be the assistant director to the CDC, was Annie’s infectious disease control doctor, and her oncologist’s son. He told Annie and me that we had to be very careful wherever we went, he said she could catch any germ out there, with potential life threatening consequences.
When I left the house I thought I knew what she was going to do. Climb out of her bed into the wheelchair, wheel herself into the dining room, sit at the table and have a cup of her beloved coffee.
After I arrived at the market, I grabbed the shopping as quickly as I could, and was home within twenty-five minutes.
Here’s a point of interest and an example that speaks volumes to the humanity I found through Annie’s cancer. When I hit the market, I didn’t walk to get the shopping, I ran at a slow trot through the market. Being a regular for over seventeen years, many of the employees and some of the customers knew my dilemma. When I got to the line to check out, occasionally I would be moved to the front of the line by a few kind words from a checkout clerk, to the folks in line. Once in awhile a supervisor would see me and escort me to customer service and take care of me there—I never had more than a few items. But I didn’t feel like a VIP, Annie was dying and it was important for me to spend every minute I could with her. People respected the situation I was in, and I certainly would have done it for them. I saw what I saw! People care. (Cancer does not discriminate, and when you enter that world, to most of us it was color blind, and there were no republicans or democrats. Just one large family of cancer and their caregivers, all living on hope.)
When I arrived home and walked through the inside garage door into our hallway, I was shocked when I saw the wheelchair. It was sitting at the foot of our steep stairs. I immediately yelled upstairs, Annie! Are you okay!
She replied, saying that she was just sitting and looking at her clothes and shoes. Try to imagine what must have been going through her mind.
While I was gone, she got out of bed, into the wheelchair and wheeled herself to the stairs. She’d crawled up 4 steps, made a left turn and crawled up 12 more to get upstairs. From there she crawled into our bedroom and had managed to squirm her way onto the edge of our bed.
After I sat the shopping down, I went upstairs to check on her. As I walked into the bedroom she shifted her line of vision to me. I could see her teary eyes, with some understanding of what she was feeling. She had all these beautiful clothes hanging in her walk in closet, with all sorts of different shoes and boots. She was trying to come to terms with her new and sad reality, in her mind, she would never be able to dress up and feel pretty again. (And I have never met a female that does not want to look pretty.)
That night I called Melissa and we put a plan together. She came over and we cleaned out the downstairs hallway closet and Melissa brought down many pretty outfits for Annie to wear when she went to her appointments. At that time, a day out for Annie was going to the doctor’s office, cancer center, or being hospitalized.
Anything the healthy Annie wore, in my opinion, she rocked it. But when a person has a collapsed spine that is bowed out, how can they feel pretty. (In a soft voice) They can’t.
One day I was getting her ready for her appointment at the cancer center. I put a pair of dark, warm full length tights on her, she picked out a short skirt, and some sort of beige western shirt with mother of pearl buttons inlaid in chrome. I got her dressed while she was in the wheelchair. When I helped her stand, she looked in the mirror and said, oh Bob, look at my back, it looks terrible! As I sat her back down, I felt her sadness, but there was nothing I could say to her that was helpful and would be truthful. Of course, in my mind I was thinking that she sure is beautiful to me. But what does that mean to a terminally ill cancer patient with a badly bowed spine, who two months earlier looked normal. Not very much. It did help when I placed the wheelchair in front of the mirror and had her look at herself from the side view. From that view her spine and back looked normal. Funny enough, she cheered right up. She was now in costume.
Understand, as a caregiver we must never assume we know how our loved one or patient feels. We should be compassionate and kind to them, not force our opinion, and simply acknowledge their feelings. Our job is to point them in a positive direction if we can. They will, in their own way and time, come to terms with the wretched cancer and the not so nice side effects. Life happens, and in time they learn to make the best of each day.
When she arrived at the cancer center, I wheeled her back to the patient’s room where we waited for Dr. Moore Sr.
A Precious Moment
He came walking into the room, very matter-of-factly and focused, while at the same time looking at Annie and saying, “Ann, where did you get that shirt?” “I love it.” Her face just beamed, she lit up the room with her smile. Looking back, I would have paid him to say those words, but I didn’t have to. The look on his face was genuine and honest. He made her day, and probably her week. Of course, this is Kansas, maybe the western shirt brought out the cowboy in him. I don’t have a clue.
This little story is a testament of Annie’s tenacious will to live, and feel pretty.
It was on Feb 11th, 2010, when I was told Annie needed hospice now! I’ll write about that another time, but the bottom line was, I took her home against all odds and strong protests from some doctors, allowing this cute little story to be told.
It was in April of 2010 that one of the home health agency workers who had been coming over for awhile, two days a week for an hour to give her physical therapy—was on his way over.
She was sitting in her wheelchair in front of a mirror fussing with and brushing her hair, while putting on her makeup. I must admit, I did recognized that she was being a bit more fussy with her look that day, then normal, and became fascinated with what she was doing, until it dawned on me, “Allen was coming over.”
I said, “Annie, Allen is coming over today.”
She replied, “Oh, is he.” As if she didn’t know. Priceless!
That put a big smile on my face, and truly was a testament to her beautiful spirit. That’s the will to live until you die. Annie was living hour by hour, day by day, and everyone knew it, including her. Somehow she did what she always did, “Put a smile on her face, got on with her day and enjoyed it as best she could.” Annie was an amazing, inspirational person.
If you have a loved one who is terminally ill, enjoy every minute you share with them. Love them, make them laugh if you can, and watch them carefully. They will teach you things that only they can comprehend. Annie taught me so much about living one’s life to its fullest.
It’s so obvious to me now that, a patient with any terminal illness is living in a world that we can’t reach. Their sense’s are so different and much stronger than ours. Their level of consciousness is on a much higher level than we’ll ever get too. Their minds open up to opportunities and possibilities we can’t even imagine. Yes, I was a very good and loving caregiver for Annie, but in depth of thought she was always one step ahead of me. When she popped out that old timeless question of, “how long do I have left” to Dr. Moore Sr., it caught me off guard and will forever haunt me. I was thinking about living, apparently she wasn’t. When we started her comfort care, she asked me another timeless question. “How long will it take me to die–one or two days.” The depth of those questions can’t be underestimated or matched. Because of Annie