“Always and never are two words you should always remember never to use.” Wendell Johnson

Three days later from my infusion, I am almost able to laugh at what happened. I still cannot believe what happened as I am a logical person with a mathematical mind. I would bet that there is a formula that some hospitals use to calculate the number of patients that can be seen. I bet that if I give the information to Alex, he may be able to come up with the answer. You have a number of patients, the length of their infusion, the number of chairs, and presto comes the answer. While my camping out idea seemed good at the time, it did not work as I expected.

We entered the waiting area with cupcakes and treats in hand. One of the staff had that horrified look of “what should I say?’ and the “please go away look”. She started with “we need approval for your infusion”. We knew this was not true since Jim had already called yesterday on this. We knew she was attempting to handle this with the words her supervisor told her to tell us. Then, she told me, “Joanie, I am so sorry, but we are full. There is no room. We cannot fit you in.”  I really could not believe what I was hearing. This was not a hair appointment or a dentist appointment. I needed my chemo. Chemo matrix sold out and standing room only? This was “one concert” that I thought I had a VIP pass? I was going to squat a protest and not move. Tears started flowing down my face. The staff proceeded to jump up and get me a box of tissues and told me that they would ask the supervisor. Who is this wizard of scheduling that has no math skills? There had to be a spot for emergencies. I let her know that I have the Chief’s cell phone and I would call him. The frustration was so overwhelming. I looked at the gaunt grey faces wearing masks (although one patient was coughing away and saying she was sick?!) and the frightened spouses. Were these patients told to come back another day and this was their day? I would not accept the words “no room or full”. My mind started to race for other ideas.

We were soon escorted to a private room. This was a good move as a sobbing patient was not what other cancer patients wanted to see. Poor Jim, his face had said it all. He was so stressed and worried that he kept looking up and down without really making eye contact. He attempted to reach out towards me, but I was beyond consoling. In my mind, I knew I could wait another day or two, but this was unacceptable. Alex was afraid and nervous. We had arranged pick up and schedules. Jim had been juggling conference calls and his work. My pain on my right side was not going away. My appetite was gone. I still could not wrap my head around the situation. You can tell a patient who needs chemo, “no”? My doctor walked into our room and he looked so frustrated and kept shaking his head. I had never seen him like this. He told us he tried everything and even called the area infusion clinics, but patients decided to take weeks off from chemo for the holiday. Is that my problem? He explained that they had room for 25 patients and today there were 40.  I continued my crying and said things that I cannot remember except I do remember a few of my special comments.  I told him that I wouldn’t die from cancer or chemo, but from dehydration and malnourishment  since I couldn’t eat or drink today. I told him to admit me to the hospital. Oh boy, then he started swearing and using the words “frickin” this and that. He started swearing on the lives of his family members that it would not matter a day or two if I waited. It did matter to me. It mattered because I am a patient with a family, a patient who has had a 3rd recurrence in 20 months, a patient who has cancer,and  a patient who will not wait another day. I asked him if I should call the Chief and he said, “yes”, and he would be right back.

In the meantime, my favorite nurse who helped me with my first chemo walked into the room. She had been on leave since she tore her shoulder from dealing with the “unbroken” chairs in the old chemo closet. We were so happy to see her. We explained the situation to her and we hugged. She is a small woman who doesn’t take any crap and will not put up with you being on the poor me train. She will yell at you if you are not eating and remind you of what is important. She is an incredible nurse and I had missed her during my last chemo.  She can find a vein in seconds without causing you even a pinch. She told us she will be right back. Within 5 minutes, she came back to tell me that she had a chair for me. In the meantime, Jim was passing out the cupcakes. So, did the cupcakes save my life? It may have been my nurse or ???

The infusion started with the steroids. I questioned the amount since I had not had that amount EVER. I apologized to my nurse and she said, “NEVER ever apologize for advocating for yourself!”. She reduced the steroids to half the amount. I questioned the anti nausea meds and Jim did too. In the back of my mind, I knew they were not going to be enough, but it was worth a try. The infusion wasn’t that long since I only had one drug instead of 2 or 3. Jim and I camped out for one hour to secure my “reservation” for chemo once a week. I knew I was a frequent flyer of the matrix, and did question the every week chemo. Oops, it was something that the doctor neglected to mention. While waiting to secure my seat, I was asked if I was here to check in for my chemo. I responded that unless there was a 2 for 1 special, that I already did my chemo. The others in the waiting area laughed and added if there was a 50% discount for repeat customers. I agreed that there should be some type of punch card like I suggested at Hoag for the scans. After so many punches, you should get a souvenir UCLA cup, pencil, tshirt or something!

I was right about the nausea. As soon as we arrived home, I started poppin the anti nausea pills. My nurse called me to see how I was doing and suggested some tips for eating and drinking. I was also high on the steroids. I could not sleep, but only for 2 hours. I think I played words with friends all night and watched t.v. I decided as the sun started to rise that I would walk Alex to school. It was the steroids taking over! I could definitely be an advertisement of “say no to drugs”. Walking down the hill, friends honked and looked at me with disbelief. I quickly sent a text to my friend to meet me at school to drive me back up the hill. What was I thinking? My brain was sending too many messages to me and I was spinning out of control.  Alex seemed okay, but kept looking back at me with a questioning face.

I cannot remember what I was thinking or doing. I decided that I would get my own smoothie. Of course, I get the smoothie and placed it in my cart. An older gentleman rammed into my cart at his full speed and my smoothie spilled all over the floor. Luckily for my steroids, I just quickly gave up and returned to my car having forgotten what items I was going to pick up at the store. Then, the steroid crash happened. My body could not move an inch and my mind was blank. Off to bed or so I thought? Alex walked into my room crying. Jim had been talking to him for a while. Alex asked if we were lying about what my doctors said. We attempted to reassure him, but his mind keeps racing. We reminded him again that negative thoughts zap your energy and my energy. We explained every detail of the matrix and he seemed much better.

It takes a village and I sure have a large village. Alex felt the love all day at school and had the best day ever!  Meanwhile, the nausea is almost gone and the fogginess began. I think that this morning the fog will be gone. I forgot what chemo was all about. As someone was saying, it was like childbirth. I focus on hour by hour, day by day. I cannot think that I will be doing this week after week for 6 months.  Looking forward to some sunshine this weekend! I remind you to hug your family, hug your pets, and hold onto the day!

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2 Responses to ““Always and never are two words you should always remember never to use.” Wendell Johnson”

  1. Lisa Says:

    How frustrating!!! It’s so true that you need to be your own advocate! I am a firm believer in that. Sending positive thoughts to you, Alex, Jim & your pets.

  2. Pendar Says:

    You are awesome! I am sending you prayers every day! XOXO

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