“An individual has not started living until he can rise above the narrow confines of his individualistic concerns to the broader concerns of all humanity.” Martin Luther King, Jr.

With treats in hand and a reservation for chemo party of one with plus one, I was confident that I would get a seat. Of course, I had to add my nurse request at the front, once I made a nice snack plate offering. Now, I know the look. It was a half way smile with eyes not directly fixed on mine. Their eyes looked at my chin which if I didn’t look this morning; I would have thought I had grown a beard overnight. Regardless, as Jim was asking me if knew who my nurse was, I was called by a friendly familiar voice. If I had a top pick of nurses, this nurse would have been in the top 2. She did get bumped to number one as soon as I remembered that she has the same vomit phobia as I have…ever since childhood. She is so sweet and speaks with a soft and warm voice always with a smile. She has 2 kids and her son is the same age as Alex. I had my pick of seats, so I chose my favorite, but asked her if it was okay since I don’t want her to be jogging between patients just because I wanted my favorite seat. She reviewed my order with me and smiled when we told her that order was incorrect. She told us not to worry even though we did. She took my blood to see if I could even get my chemo. I thought all levels should be okay, but what was up with my platelets….down they go in one week and I was missing some red cells…okay, now I was out of excuses. Last week, my excuse was the big blood draw Scripps took from me. Oh well, I looked at the print out provided by my last week nurse and you really have to be almost needing a blood transfusion for them to not give you chemo. I knew my doctors wouldn’t let this happen and had told me with this drug we could take a week off and it would not impact anything. I got my printout from last week of my tumor marker…no news there.
I guess I am still trying to do some record breaking.
I told my doctors that I believed my tumor went down.
They told me that would not happen until 3 cycles. I know they think I am crazy!

And their off, first negotiation was the steroids…I said no, they said yes, nurse was on my side, then race to the finish line….answer was no steroids since my husband the rock star convinced them that  if we changed too many things at once how would we know what was working! Then, to the anti-nausea meds, yes we knew that the average person does not need them with this chemo, but haven’t they learned that I am not average? Negotiation number 2: anti-nausea drugs…with pills in hand and some back and forth plus explanation on how the chemistry worked, I get the IV anti-nausea drugs. Thanks to my rock star
husband once again for being so brilliant to understand how these drugs all worked. Now next question, “to port or not to port”: after the team of nurses look at my arms and decided once again how great it is that my arms are so slender (glad my butt is not needed in this), no port was needed, but they would let me know. The IV was started and I saw the familiar faces, the young girl who has a 10 month little girl, the repeat woman who flies in weekly, and others who I lift my eyes to smile, but am not ready to hear their stories. I saw the story in their faces and bodies. Their frail bodies withered in pain as if smiling caused them to have more pain. I made small talk to the group about the patient that no one wanted to sit next to or “play with”. We all commented that “she meant well”, but her negativity was too much and her outbursts and anger was something this group did not relate to. I had the team of nurses’ comment about the cake pops, pumpkin bread, and last week’s fortune cupcakes.
They also all checked my IV and worked as a team to ensure that I won’t be nauseous. Of course, the acid reflux set in and I popped a pill. My top 2 nurses decided I needed an extra boost to avoid dehydration and helped with my nausea. They paged my doctor and he agreed. Okay, this added about 30 more minutes, but proved to be worth it. I looked around the matrix and it was full. Not an empty chair in sight. The nurses were literally running patient to patient. I asked the nurses and they commented that it had been this way since December. The office staff went from hair down to hair clipped up with who knew what…everyone looked frantic, but nurses were still smiling as they grabbed a snack or two while checking blood for each patient. My rock star husband asked for my next appointments as we had a bad feeling with Monday holiday and February holidays. I actually heard them say, “No more room, we cannot do it”. One nurse told me it is as if they were giving away wide screen plasma TVs! Are we still on this mathematical problem? You know once I get to a good place, I am not going to let this go! We walked out to the lobby to see standing room only! Not a seat empty, nowhere to even stand. We both decided to get the bathroom keys from the other office, but soon saw that room filled to capacity too! We left knowing that I must follow up on my schedule.

Not sure why, but I passed out in the car on the way home. I haven’t done that in a while. I passed out after seeing Alex’s smiling face and hearing him telling me
he had a great day. This was so much better than then the steroids. I woke up and was able to eat something only to go back to sleep. I woke up thinking
I was feeling fine and sent a text to my friend that I wanted to go for a walk. Jim looked at me and I know what he was thinking. I realized that I could barely go up and down the stairs. I could barely get out of the chair!
Okay, another text for some help to get a few things since Jim had to work.
I can imagine my friend smiling as everyone knows how I am. Thanks to team Joanie who ran around for me around the town. I was feeling so much pain, but happy not to be nauseous. I passed out once again. I knew Jim had been on the phone all day and left for some work crisis. I do hate the selfishness of cancer.
I was in my fog.

Unfortunately, I woke up at 4am and decided to try to make Alex’s wish come true to see a basketball game. He is now equally obsessed with football. I think it is genetic. As he continues to tell me random facts, I think of my father who knows everything about everything regarding sports. I found all sorts of great deals on Clipper tickets. I got caught up in the moment. Then, the reality of the situation happened. Jim and I had a conversation about what we both were thinking. It was emotional and cathartic, but just as painful as the pain I was physically feeling. I was angry. I hate all the reminders that my body gives me as the chemo fights the cancer. This is my life. This was yesterday. This is today and we do the best as we can. My husband the rock star knows too much, hears too much, and sees too much. He is my protector and my reminder to stay strong. We walked in Dana point and I felt the ocean air on my face. I took deep, deep, breaths and thoughts of sunshine filled my mind. We sat on the bench and talked about getting rid of the carpet to wood on the stairs and in the loft, cleaning and sealing the tile downstairs. So, it goes, life goes on. I woke up again at 4am and feel the fog lifting. I think of that John Denver song even though Alex thinks Country Road is a made up song. He informed us of this “fact” when he had his last trumpet lesson. In the words of John Denver:

Sunshine on my shoulders makes me happy
Sunshine in my eyes can make me cry
Sunshine on the water looks so lovely
Sunshine almost always makes me high
If I had a day that I could give you
I’d give to you the day just like today
If I had a song that I could sing for you
I’d sing a song to make you feel this way
Sunshine on my shoulders makes me happy
Sunshine in my eyes can make me cry
Sunshine on the water looks so lovely
Sunshine almost always makes me high
If I had a tale that I could tell you
I’d tell a tale sure to make you smile
If I had a wish that I could wish for you
I’d make a wish for sunshine for all the while
Please seize the moment and have a sunshine day!

 

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One Response to ““An individual has not started living until he can rise above the narrow confines of his individualistic concerns to the broader concerns of all humanity.” Martin Luther King, Jr.”

  1. Diane Says:

    I love you Joanie! xoxo

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