Archive for December, 2012

It’s only hair…

December 24, 2012

As I do my old man comb over brush forward, I am slowly coming out of the fog. It really annoys me that I am trying to fluff forward my hair, but I think back on my chemo day. I had my VIP seat as usual with my “A” team. Each of the nurses came to hug me and tell me  how happy they were to see me. I realized looking at their faces that someone was gone. I quickly did a scan and made every attempt to scan my brain for faces I remembered. It was a blur. Not to be without care, but there are so many faces both very young and old.  I could not remember. I was in/out of my drugged phase at chemo and a couple sat down next to me. I always try to be open in case someone has a question since I have been there and done that. They were newbies. The husband had that same look of shock and disbelief, but said one thing even though his eyes were saying something else. The wife kept cheering on even though she had that grey look of cancer and walked as if the wind blew, she would break due to any slight breeze. The wife passed out. The husband began with his questions, but I knew he just wanted to talk and talk. He was wishing he would be any place else. He cycled through the timeline and attempted to focus on all the highlights. I listened and smiled. I felt sad again that someone else was dealing with this cancer crap. I felt worse that Jim and I were still dealing with the cancer crap. It is a strange combination of frustration, sadness, happiness, and gratefulness. Right now, I am thankful to be here and dealing. I frightened Alex again with my passing out while he was talking to me. He had bad dreams and told us that he barely slept. I never intended to fall asleep and kept thinking if I just put my head on this pillow, I was going to be much more comfortable. Oh well!  I will add some more hair gel to do the fluff forward look, but do not take in consideration any windy conditions. Not wanting to look back, but the holidays are like that…I am much better than I was the last 3 Decembers. It is all relative. I plan to make the most of every day during this winter break whether wind, rain, sun, or more wind. I may even wear a hat. I am hoping you all stop for a moment and enjoy THE MOMENT. Really hair or no hair…it’s only hair…there is so much more.

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Holiday time…apologies to friends and family

December 17, 2012

Since December 2009, I have not really felt that great during holiday times. Looking back, I realize that not only have I missed the winter break, but I missed many events over this year. In the past week, I have enjoyed very special moments with friends and family. During these truly special enjoyable moments, I realized that I missed birthdays, concerts, ballets, parties, baseball games, and just every day life of friends and family. I said before that cancer is a selfish disease, but either I was too foggy or too sick to know what I have missed. I am sorry that I missed knowing the who, what , where of your life. I feel terrible that I may have missed your birthday or your child’s birthday. Cancer may make people angry for different reasons and I feel terrible that I have not been there for you. You have all been there and continue to be there for me on this crazy cancer ride. I know I have not been here to listen to your worries or celebrate your joys. I have to admit that I haven’t even been all that “there” for even Alex and Jim. Alex’s usual comment has been lately, “are you with us, mom?”  Could it be the cumulative effects of chemo or just my brain full of cancer job duties? Either way, I don’t like it, and I am not sure I have much power to make it all change. Yes, looking back does not help anyone and especially a cancer patient, but neither does looking forward. This always just ends with the day facing me. So, you can possibly understand my dilemma and guilt for all I have missed. I am truly sorry that I am not who I was (the queen of knowing all). I cannot apologize for who I have become. Alex asked me if I am a warrior or a survivor? I think I am a little of both, but more of a warrior every day.  My focus is on doing all I can to be here every day. Some days it is easier than others, and the job is difficult to define. This cancer job is all consuming.

I go back to chemo this Wednesday and we will discuss the “plans”. The port has not become my friend yet and Alex even said that it is too big for my body. He will get used to it like I will. I am not sure why it itches or still aches, but I am sure it is part of the healing process which is longer since I am still on chemo. The plan will be to stay on this chemo or how long can I stay on this chemo or to add any other drugs or who knows. I did get back the latest and greatest genetic report. This discovery was that of all the genes causing cancer I do not have any…zero, zip, nothing inherited to cause my cancers. Which brings us all back to the question of what is causing this and why won’t it go away? This also may mean that the new trial that UCLA will start in January may not even work for me. There are so many unknowns and unanswered questions. We will see what the discussion will bring in hope that I can have a break of some kind or possibly go 4 weeks for each chemo instead of 3. I seem to have lost a lot of time between the last chemo and the port surgery. After this next chemo, I will have a break because Alex has a break.

My focus on our weekend turns to the memory of walking in the rain on the beach sipping hot chocolate. I cannot ignore the episode at Fashion Island and the idiot gunman. Yes, we were there and I saw the gun and the man. I was frozen in disbelief while Jim and Alex told me to run and move. My thoughts were in slow motion and questioning why there would be someone doing this at Fashion Island. Alex was frightened and shocked too. So, instead of looking back, we decided to dance around and be sillier than silly. We are on the countdown to sleeping in and enjoying family, so we are looking to tomorrows a teeny tiny bit.

Again, all I can say is sorry that I am not there like I used to be and sorry that I missed so many of life’s events. You should know that I always want to be there and be with you more than I can say. So, what I will say is that I am hoping you are not too busy in your life to enjoy the moments with your family, talk to your friends both near and far, dance around the house, sing holiday songs, sip hot chocolate, walk in the rain (or snow), and don’t let the day go by without being kind to others whether it is your postal carrier, your neighbor, the car in front of you, or the person in front of you writing a check for their groceries. I appreciate all your support as this continues to be a long journey. As I enter my drugged days, I borrow some words from a sunshine warrior and wish your days filled with “one fun thing” (I can always find one and know you can too).

Can you bling or have lights on your port?

December 5, 2012

Lesson learned (lost track of numbering): you always want a surgeon who thinks your surgery is “no big deal” and acts like cutting you open will be the same as brushing his teeth. We arrived to the surgery center or arctic zone as we like to call it with minimal issues of traffic. I was greeted with the usual paper work and copies of the HIPAA stuff that I could make my own coffee table book if I kept every single one of them. Of course, I looked around the waiting area and realized that I brought the average age down to about 70. Then, we heard the complaints of people waiting too long and a few whines, but in minutes I was called back. My first nurse looked shocked to see me and kept shaking her head in disbelief. She said she read my chart (and I reminded myself that on paper I look pretty bad) and told me that I had been very “busy” and then followed by the “why didn’t you get a port in 2010?” I answered that maybe my doctors were so optimistic that I would only have to do chemo for 6 months (even though I was thinking that getting a port equals an admission that I am a person with cancer). Regardless, I was thrilled that this nurse really read my chart even the small details. I was told that I could keep my underwear on only realizing that I should have worn better underwear. It was as if I felt that once they would start the surgery the “audience” would say, “check out those undies”.  Then, there was the question of my last anesthesia which was something I could not explain since Jim was the one there. Jim came back to explain my inability to start breathing among other details he would have liked to have forgotten. While waiting for the audience of residents and more nurses, Jim googles the surgeon, so we know what he looks like. Each time I am met by a new audience member, there is this look of either disbelief or depending on the experience level look of fear of saying the wrong thing. I am very familiar with all the looks and just joked that once I put the surgery cap on that someone better promise to give it back since my hair was still falling out and I want to “glue” it back on.  I also asked if there was a way to put lights on this port since Alex would find it cool to have lights under my skin. My surgeon thought it would be a good idea to have personalized ports. Once we met the surgeon, he sped through the part cutting my neck open to reach my jugular vein and Jim and I stopped listening. Again, I was reminded that being thin in the wrong places only increased other issues. Of course, I joked that I really should get a butt port and wouldn’t that be funny for the infusion center nurses. I kept thinking to myself that they think that they must have started the IV drip for surgery even though this was my typical behavior. Yes, I know I have been through a ton and it has only been 2 plus years (feels like 10 years). My anesthesiologist was amazing . Even though all the audience was convinced I would have the IV in my feet, he found a vein to use that others would have needed an ultrasound to find. More nurses came in and I lost track of names and their individual jobs. Soon I was wheeled into the operating room. The IV was started, but I was only a bit dizzy and kept thinking that I really did not want to see anything. As I was looking at the ceiling and deciding that it needed to be repainted, I was in or out hearing Beatles music and other 70s music making me think that my surgeon was in his 50s. I heard voices, but didn’t hear what they were saying. VERY STRANGE. Next think I knew I was on my way to recovery remembering the last song I heard (only to forget it now) and was talking to my anesthesiologist nominating him for anesthesiologist of the year. I was not foggy, but not clear. I kept telling him my neck hurt and when I was breathing my lower shoulder, front of rib cage area hurt. I felt fully awake, but nurses felt that several “pushes” of percocet would do the trick. Nope, still hurt when I was breathing. They started with oxygen and had to take a chest xray to ensure the device was placed correctly. More nurses reviewed my chart and seemed like they didn’t want to deal with me since I wasn’t the straight forward case. Luckily, I found my nurse who chased everyone to figure out what had happened. Next chest xray had to be done since my lung could have been punctured like a balloon with a pin hole leaking. My pain remained while I was breathing, but my neck was somehow feeling good AND I could not feel anywhere on my chest. I decided that was a good thing since I later noticed the amount of blood on my gown. Of course, no one wanted to sign off on my chart since I was a mystery. I joked and said what could be worse than cancer? I was convinced that I was okay to go since I could breathe and my nurse discussed that I could have pinched a nerve or the residents discussed referred pain. Finally, the chief of something signed off and we were ready to go. Only I could not even dress myself and why didn’t someone explain that I wouldn’t be able to lift my arm or move my neck. Thank goodness for my zipped sweatshirt. I definitely needed a wheel chair and gave into the process.

When I looked in the mirror in the car, I realized the extent of the bandages since I could not feel anything below my head. Yikes, I was definitely not going anywhere for a couple of days and I could not drive since the more I move, the more I bleed, and the more time it would take to heal. I laughed to myself thinking I was going to watch Alex’s band concert looking like a real weirdo with bandages around my neck and chest AND with no bra on?! Let’s not take away from the middle school band performance. Plus, any movement now feels as if someone is stomping on my neck and chest.

Last night, my junior doctor Alex started with his questions about having the port…would it decrease the time of infusions, would it still hurt, would the chemo get in my whole body faster, how do I go through security with it….Yikes and double yikes. I started reading the booklet they gave me. Oh great, it came with a scanned bar code and a souvenir bracelet, plus a lot of diagrams which I handed to Alex for his medical review. I asked if he wanted the bracelet and he thought I may need it. I kept thinking of the t.v. show Homeland and wondering if Abu Nazeer could access my port with this bar code and do some remote chemotherapy? Okay, I still must be drugged.

The surgery center called this morning to ask me about my breathing. Guess since I am talking, my breathing is fine, right? I asked about the bruising and how long I would have to look like a Halloween zombie or someone who had been beaten up. They said all of that was normal and I said that I hoped they realized that it was NOT turtleneck weather and how would I wear one since I could not raise my arms. I guess I could go back to the Euro scarf look or just go back to bed with another pair of pajamas on. The surgery center asked about the bleeding and reminded me that I needed to stay still for one more day and not to remove any of the bandages. I promised and decided not to ask about online shopping.

So, it is official. I am a chronic cancer patient. I realize the truth about my history on paper, but I know I am so much more than my history. I am reminded of that when I met each one of my “team” for this surgery who are equally impressed with my crazy attitude. I can continue to face tomorrow with much hope and determination despite any words on paper. I cannot let the cancer define me even though it tries to take control of some of my days. I will continue to make the most out of each day and savor every moment that I am here.

“My gift list by Alex Triestman: 1. Cure for cancer, Price: would give everything”

December 3, 2012

Chemo was a blur or it could have been the fact that I slept for 15 hours one day. I am back to losing days and am surprised when Monday was here already. This morning (as usual) I spent my early morning coordinating my blood test for the pre-surgery of “the Port” just because one code was missing. Back to reality, I have to check and double check each order and paperwork. I was still on my vacation from chemo when I asked Alex if he wanted anything specific for Hanukkah. He came back with his list and his eyes turned down without a smile. Usually, he has one “thing” that is a must have for the season. He handed me his paper with his list and one item saying, cure for cancer. I couldn’t help but to cry. Cancer makes me angry especially since this is as Alex says, “weighing on his shoulders every day”. He explains that even if he is busy that he still is worried and thinks about me. I try to re-focus his mind to all the fun we had in Maui, but he says that it is at night that his thoughts spin and spin. I get it. I get angry. I still have my angry moments and my moments of laughter. I really think it is the holiday time that makes me think about what I was doing last year or the year before or even the year before. I am so thankful to have a great circle of friends and family around us to keep things as “normal” as possible. One day at a time!

I think my fear about tomorrow has caught up to me too. I am now caught between the reality of continual treatment since I will have a port because why would my doctor agree to a port just to put one in for fun. Honestly, the chemo was such a blur because of all of the addition of pre-meds that I cannot even tell you what happened. For the first time, I passed out. This did concern my audience of nurses, doctors, and Jim. They kept asking me if I was okay. Then, the days followed with the usual drugged feeling that I don’t like with bone pain mixed in.  I still don’t feel like it is December. I am stuck in October. The months since our trip to Europe just blurred fast forward. I make my list and check it twice, but can only think about today and tomorrow.  I wish my mind was clearer, but I think the fog will help for tomorrow.  Strangely enough, it is raining, but the sun is trying to come through the clouds. I am not sure which is better, so I think I will rest and close my eyes. Dreaming of Maui….