“If today was your last day and tomorrow was too late Could you say goodbye to yesterday? Would you live each moment like your last Leave old pictures in the past? Donate every dime you had, if today was your last day? What if, what if, if today was your last day? ” Nickelback

I know that I have used this song for my blog, but yesterday, my grown up Alex had to ask first, if he could use the female dog word out loud to ask a question about a song. I gave him permission to speak. He asked why the Nickelback song said, “Leave old bitches in the past”. He didn’t understand, but confessed to me that he heard me use that word before and he thought I didn’t mean a female dog, but knew he shouldn’t use the word. I told him the lyrics were , “old pictures in the past” and he moved to his next question of, “could we go to the concert?”. So, I looked and yikes, it is at Staples center in Los Angeles. I told him that we should do further research about concerts closer in the area, so he is on his google  investigation. Of course, meanwhile, I think his message to me was not without thought since he is an old soul. I definitely should and do leave old bitches in the past. It isn’t worth the energy and believe me, my energy reserves are depleted.

This morning, I received the news that my tumor marker was down 10 points. I entered this data point on my graph which Alex proclaimed a downward trend with some bumps. I will take it. Just need to stay steady to July and the cruise. One of the next drugs I will take is an immunosuppressor given to transplant patients which as my doctor explained that it would be good to stay away from people. WHAT? I love people! Hmmm, for the love of people, I will do what I have to do, but prefer to do it after our cruise. Plus, would love to not wear my wig while I have a bit of hair which I will lose if I take the next routine of drugs, so it may look weird, but would be much cooler. I will have to get approval from my fashion coach, Alex.  So, my fear of numbers wasn’t justified, but I could not help last night trying to run all those scenarios in my mind while toxified with chemo and steroids…not a good mixture for numerical analysis. I gave up and went to sleep.

Back to yesterday, (sorry for the jumping around, but this goes back to the “squirrel, squirrel” moments while in chemoland fog) I was not in the mood for chemo and for the first time did not wear earrings and did not find my cutest outfit. I was thrilled to be “armed” with the baked goods o-rama. Instead of 3 offices, they now have 2 and it was packed to the rim with patients. I started handing out my goods and the office told me that my doctor said I wouldn’t be here today. Not a good sign. I saw my doctor and announced that I was here. I proceeded to go to the closet. It was packed, but they hurried me into the place since they “saved” me a chair at the window next to my upbeat partner in crime. Wow, a VIP uprade! Second time at a window and the place is packed. I felt lucky and didn’t look back or around at all the other chemo patients. I was not in the mood for the potential debby downer. I stuck by my partner and start our laughter and fun. Our nurses even unlock our chairs so we didn’t have to stretch our necks. Who knew we could have FREEDOM…I was already confused and not speaking in a logical way and didn’t even have any drugs. Luckily, I noticed that I was about to get the same drug I took by pill 15 minutes ago. Just caught that in time. Then, it came to the waiting for the doctor after my blood looked pretty good. (or good to go for chemo) Since my partner in crime (the sign was up for no loud talking and I couldn’t see if my name was written below) and I sent our hubbys for a lunch request at 10:30, we decided to alternate toilet visits since she has the same doctor. This way we wouldn’t miss him. We did notice some VIP VIP in the private room was getting a lot of attention. We also saw another doctor giving a tour of the room. We both smiled to this newbie and told her it is so easy. After they left, we said to each other at the same time, “except for the side effects”. I told her what Alex said at his middle school meeting and she told the nurse that Alex could work there asap as he understands better than most adults. Sad, but true. I would rather have him understanding about none of it. A woman came over and I wasn’t my usual extended self. I have no idea why, but these last few days of deep conversations have left me without any space for anyone else’s stories or troubles. (or should I say, any new people with any stories) My peeps are my peeps and I will always be there for my friends. Of course, I was later feeling too much guilt as this closet was pretty dismal with too many faces of 20 year olds, so I had a conversation with the woman and tried to lift her spirits a bit. My doctor explained all the scenarios which I half way listened. Since my current chemo is not that studied with the other drug, we would need to be cautious since it is a cardio toxic combination. I would have to have more heart studies and blood work every week. I did get an increase in the dose to see if that would push my numbers lower, plus I am in the final preparation for my return to Scripps on the 20th for my vaccine which will either do something or nothing. All in all, it wasn’t too bad and I went home to sleep.

Back to our middle school meeting, I was and still am so impressed with Alex and his ability to articulate his feelings so well to these adults. I also had a new found appreciation for those who do the head tilt and comment, “I had a cousin, grandma, or uncle who had cancer and died”. I never knew there were adults or adults in the world of education who could make some comments that, “they get it because they ran in a cancer race” or that Alex’s dad probably told him to “toughen up”. I am fortunate to be in a school with teachers, educators, and staff who do get “it” and have a compassion and understanding at a level that is much beyond the average person. I really thought since I have met so many people along my roller coaster that I never thought a lower range of understanding was out there. You know in a year’s time, I will change their understanding so that they would not put any student or parent in a similar situation. Alex so clearly expressed what our school has done for him like his principal just coming up to him at lunch or recess and talking about sports to get his mind off me or his teachers just seeing the look in his eyes and know what he is thinking about or a visit to the office for a chat that calms him and allows him to go back to class. He explained his friends who support him and friends who even cause distractions in the class to have laughter fill the room, so Alex won’t feel sad. Those who just understand without making the cancer be the subject and provide him with support and comfort. He also explained his coping of doing his art, music, and tennis. Most people know that I am a talker, but I was a listener that day. When I explained Alex’s sensitivity especially when he has worries, Alex got tears in his eyes and I tried not to cry too. I just tapped his leg and smiled holding back the tears. I was wondering what these adults were really thinking since most remained quiet and listened. Some had expressed how impressed they were with Alex and his honesty and ability to articulate. There is much more to him than his numbers on his test scores. Yes, in a middle school this size, you do tend to be a number, but at his elementary school with almost 800 students, he has a name and he is known for who he is. With the school year coming to an end, I used to think about how I will miss the every day faces. I didn’t really think about how much Alex’s teachers, staff, principal, and friends have done for him. Each one has made a difference in his life that is beyond what my words can describe. It has been the difference in Alex being a successful scholar. As Alex said, when teachers or people don’t get “it” (the cancer”), this causes more worries for him. I am glad that my village gets “it” and gets Alex because this had made all the difference for him since 3rd grade and my diagnosis.

I was in my fog all day and hope it will clear with tomorrow maybe a walk around the block. Hope you are all enjoying the sunshine and clear air.


One Response to ““If today was your last day and tomorrow was too late Could you say goodbye to yesterday? Would you live each moment like your last Leave old pictures in the past? Donate every dime you had, if today was your last day? What if, what if, if today was your last day? ” Nickelback”

  1. Diane Says:

    Joanie…we are so lucky to have Alex as a beacon of light, and kindness and compassion at our school. He is truly his mother’s son and you have every reason to be so proud! You are both (& we’ll throw Jim in here too!) “one in a million” and you are loved!

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