Once you begin chemo you start the clock of days. I was told the hair was going to go and it would start coming out in 18-21 days. I needed to make the big decision. Do I shave in preparation or shed as I go? I wasn't sure. So, I Googled celebrities that I knew had experienced the same journey to see if they posted any words of wisdom. Fortunately, I found stuff by Robin Roberts from ABC Good Morning America. I watched her video on having her head shaved in anticipation of her chemo and I sobbed. This was way to painful and emotional of a way to go for me. She shaved because she felt it gave her control. I found this humorous. When you are diagnosed with cancer you lose most if not all control, anyway. I needed the slow small steps of shedding to get use to my new look a little at a time.
I also knew how irritated and itchy I got from whiskers. I was concerned that, in addition to all the other discomforts I was and would be experiencing and could not avoid, like the tightness of my incisions and the other multiple crappy effects you have from chemo running through your body, the last thing I wanted was to be irritated and itchy because I chose to shave my head. This was the final deal closer. Shedding was the way to go for me, no doubt.
Twenty-one days into chemo, showering equaled 50% hair loss of whatever hair was left on my head when I stepped into the shower. Interestingly, that remained consistent until I was down to a few thin strands. Knowing this, each day I would take several big deep breaths before I stepped in, kept my eyes closed and at all cost did not look down. I certainly could feel the huge gobs of hair in my hands but would rinse them quickly with my eyes remaining shut. Once I was finished washing my head, I was comfortable opening my eyes but certainly was not looking down at the drain. I didn't need to, as the water level was rising quickly because the drain was piled high with hair. A quick brush of the foot or scoop of the hand helped move the water through.
This brings me to necessities for the bathroom. I kept the trash can close to the shower so while I was showering I could quickly scoop the hair from the drain and into the can and move on. I kept a dust pan and brush in the bathroom so I can sweep up all the hair that just trickled off my head when it was dry. This is like dealing with a pet that is severely shedding their coat. But, the other people that I cohabitate with did not need to be upset by walking into a bathroom floor covered in hair and slammed into the reality even more.
Comically, during this stage, I often felt like a cartoon character when I drove in my car with the windows down. I could see and feel the hair leaving my hair and flying around the car and out the window. This would put a smile on my face. Just envisioning myself arriving at my destination with the left side of my head completely bald and the right side still full of hair was hilarious. I may attempt to draw this out some day just to put in my journal. Unfortunately, I'm not a cartoonist. So, I'm not sure if I'll be able to depict it well enough so others will know what it's suppose to be.
Shedding causes a transition of appearance, for sure. Family and friends were always curious what I looked like as the hair loss process evolved, especially if we were together and I had my wig on. I was often asked how the hair loss was progressing. I got into the habit of accessing my appearance and relating it to a commonly known figure. So, for instance, I could say I look like Albert Einstein especially when I woke up in the morning with clumps of hair sticking straight up and in every direction. But, was also so thin that it was see through across the top of my head. Then as time passed, I would say I looked like Linus in Charlie Brown with a few strands of hair laying back over my bald head. When the great day came that my hair was starting to grow back, we finally shaved off what little was left so it was almost even with the new growth. At this juncture, I looked like Annie Lennox from the Eurythmics and joked with everyone, again to break the ice with humor, that I feel inclined to sing "Sweet Dreams are Made of These" and often would than break in song.
Saturday, January 22, 2011
Let Me Make You Comfortable
I tried to make myself as comfortable for others to see me and be around me as possible. Unless I looked in a mirror, I didn't realize how I looked to others. I myself have experienced being upset by seeing a fellow survivor working through the process. Even after my own personal experience I am still moved by their appearance and my knowing. So, I purposefully did whatever I could to help everyone around me be at ease in seeing me. As noble as this sounds it really was selfish on my part.
You see, when you come face-to-face with a friend or family member you see their facial expression as a result of looking at you. This was the difficult part for me. I would get upset knowing they were upset because of me and what I was going through and there was no way I could fix that. This was even tougher to deal with because, by nature, I'm a fixer. So, I tried to fix this the best I could.
Three weeks before I started chemo, I got a short styled wig and got my hair cut short to match. So everyone got use to my new hair cut and then once my hair fell out that it was noticeably obvious, I transitioned to the wig. This allowed me to fool most people, other than family and close friends of course, for awhile longer. For the most part, it worked. I received compliments from clients and acquaintances on my "cute short hair cut" when I sported the wig.
Once the hair loss was to a noticeable point it was August...hot, hot hot. The wig for social events was usually not an option. So, I decided to go radical. I went to the local Harley-Davidson store and purchased a few skull caps/do-rags with flames. My point being, humor is great for breaking the ice. So, if I showed up at a backyard picnic in sunglasses and my flaming do-rag, the reactions of my friends was laughter because a biker chick persona was the furthest thing away from who I was.
As my family and friends got more comfortable with my hair loss, I moved to wearing baseball hats most of the time. Thanks to a friend of my sister who had traveled this journey as well, I had a collections of baseball hats in many colors and was able to coordinate them with most of my outfits.
Once the ice of avoidance (because they don't know what to say, because they are afraid they would say the wrong thing, because they were afraid they would get too emotional) was broken, I could be included like everything was normal.
Out of respect, if you will, I always wore my wig to church no matter what the temperatures or conditions. I did this because I myself recall several occasions where I would be at mass and see someone who was obviously fighting the fight that I hadn't known about in advance and found myself distracted with concern for that person and pretty much miss the whole mass. I didn't want to be that distraction for anyone. So, the wig became mandatory weekend mass attire for me. Which was also nice because acquaintances would compliment me on my cute short hair cut and I could respond, "thank you" and move on.
You see, when you come face-to-face with a friend or family member you see their facial expression as a result of looking at you. This was the difficult part for me. I would get upset knowing they were upset because of me and what I was going through and there was no way I could fix that. This was even tougher to deal with because, by nature, I'm a fixer. So, I tried to fix this the best I could.
Three weeks before I started chemo, I got a short styled wig and got my hair cut short to match. So everyone got use to my new hair cut and then once my hair fell out that it was noticeably obvious, I transitioned to the wig. This allowed me to fool most people, other than family and close friends of course, for awhile longer. For the most part, it worked. I received compliments from clients and acquaintances on my "cute short hair cut" when I sported the wig.
Once the hair loss was to a noticeable point it was August...hot, hot hot. The wig for social events was usually not an option. So, I decided to go radical. I went to the local Harley-Davidson store and purchased a few skull caps/do-rags with flames. My point being, humor is great for breaking the ice. So, if I showed up at a backyard picnic in sunglasses and my flaming do-rag, the reactions of my friends was laughter because a biker chick persona was the furthest thing away from who I was.
As my family and friends got more comfortable with my hair loss, I moved to wearing baseball hats most of the time. Thanks to a friend of my sister who had traveled this journey as well, I had a collections of baseball hats in many colors and was able to coordinate them with most of my outfits.
Once the ice of avoidance (because they don't know what to say, because they are afraid they would say the wrong thing, because they were afraid they would get too emotional) was broken, I could be included like everything was normal.
Out of respect, if you will, I always wore my wig to church no matter what the temperatures or conditions. I did this because I myself recall several occasions where I would be at mass and see someone who was obviously fighting the fight that I hadn't known about in advance and found myself distracted with concern for that person and pretty much miss the whole mass. I didn't want to be that distraction for anyone. So, the wig became mandatory weekend mass attire for me. Which was also nice because acquaintances would compliment me on my cute short hair cut and I could respond, "thank you" and move on.
Friday, January 7, 2011
Identity
Still rippling through the "changed identity" part of the journey, I've been curious to see if or how it will ever come to an end or get back to normal. Recently, I found out that for the most part, that will be up to me.
What happens with your identity is one of two things. You become invisible or unrecognizable to the people you have known and you become notable to total strangers. Surprisingly to me, this was a devastatingly significant effect of chemo, the loss or drastic change in one's recognizable identity.
When you are a people person, you naturally speak to people when you're out in public. If you see a friend in a public place, you stop and say hello and share a hug. However, when you take in most chemo cocktails, you experience a significant change in appearance which results in an unfamiliar appearance.
Like most chemo patients, whether I was sporting the short prechemo hairdo, the wig, the bald head under a hat or the new regrowth of hair that was naturally gray, I looked very different. Most people that I would see in public had no idea who I was. I called it being invisible. I truly was. Unless I chose to take the time to reintroduce myself, but that would then result in having to talk about my journey. And when you are in it, you don't want to talk about it.
I found that the more I talked about it the more unsettled I became. It made a reality that you didn't want to be in, more real. All you want is to be normal and for people to look at you and talk to you like none of this is happening. But, that is impossible because people care and want to know. As many of my network of supporters said, the more they knew about me on my journey it helped them know how to pray for me. Therefore, I wasn't going to argue. I'll take all the prayer petitions I can get.
This strange reality that I still struggle with, all came together for me yesterday. Let me first start by sharing some of the various scenarios that occur while out in public.
While browsing through a gift shop, I made eye contact with two ladies who asked, "are you a survivor?" I smiled and said, "yes, I am". As it turns out, these two ladies were sisters and one of them was a survivor herself. So, we chatted for quite a while and shared about our experiences.
When I went to breakfast with a very good friend and our daughters, someone I've known for over 15 years and had just chatted with on Facebook the day before, approached our table to chat...with my friend. She didn't recognize me, until I looked her in the eye and said something. She felt so bad but it was no big deal for me. It's the reality that I've gotten use to.
I have seen people in places and assume that they didn't recognize me. Only to find out later from someone else who also knows that person, that they did in fact see me but chose not to talk because they didn't know what to say.
While I was descending an escalator in a dept store, I happen to make eye contact with the older gentleman behind me. He had a big, jolly smile on his face and asked, "was it a hard decision to go with that hair style?" Of which I answered, "it really wasn't a choice". He was then very apologetic as I was telling him, "really it's fine, no big deal". He then went on to say, "I was going to tell you that you look really good with it".
So this is how it is on a daily basis. There is no way you see them coming or no way to know which one you're going to get. I've thought many times, at what time will I be normal, recognized by those I've know for years and no longer notable by strangers.
Yesterday, I learned that I may be in control of that decision to a certain degree. As I was making a quick stop in a ladies clothing store to look for the perfect thing to wear for New Years, it all came together. My daughter and I whipped through the clearance rack, found several possible selections and headed to the dressing rooms. The store manager came over to unlock the door so I could try them on. As I'm trying on, I hear her say to my daughter, "is that your mom? She looks so great with her short hair, I love it." To which my daughter replied, "Yes, she does, but it really wasn't her choice." The woman asks, "is she a survivor?" My daughter says, "yes, she is." The woman says, "me too, twice."
So, I emerge from the fitting room in one of my finds from the clearance rack and engage in conversation with my fellow survivor. Seconds later, the fitting room door to my left opens and out steps a woman who says, "me too, three times." We all start to laugh together in disbelief.
These ladies could have chosen to be normal and not notable. But I am so thankful that they bravely chose to speak up and share. The three timer to my left was a breast cancer survivor. She says, "lets join hands and share our positive energy." So, we did. As we cheered for each other and our successful journeys we are quickly joined by a young lady who just entered the store. She was not much older than my daughter. She is sporting the very same hair style as I am, style by chemo. She joins us and says, "hey, me too." She had just finished treatment for lymphoma in October. She was walking by this store, had never been in there before and for some divine reason, felt compeled to enter and there we were cheering. I decided we need a picture, this was so unbelievable. What an amazing experience of hope.
My daughter took our picture, and asked for the e-mail addresses of our new friends. I sent these ladies an e-mail with our picture attached. It would be so great to stay in touch and share our stories of continued health and success.
Being a cancer patient is something no one ever would want to be identified as. But, because of your new identity you have opportunities to meet the most amazing people. I think I will always chose to meet and identify with these people whenever I can.
What happens with your identity is one of two things. You become invisible or unrecognizable to the people you have known and you become notable to total strangers. Surprisingly to me, this was a devastatingly significant effect of chemo, the loss or drastic change in one's recognizable identity.
When you are a people person, you naturally speak to people when you're out in public. If you see a friend in a public place, you stop and say hello and share a hug. However, when you take in most chemo cocktails, you experience a significant change in appearance which results in an unfamiliar appearance.
Like most chemo patients, whether I was sporting the short prechemo hairdo, the wig, the bald head under a hat or the new regrowth of hair that was naturally gray, I looked very different. Most people that I would see in public had no idea who I was. I called it being invisible. I truly was. Unless I chose to take the time to reintroduce myself, but that would then result in having to talk about my journey. And when you are in it, you don't want to talk about it.
I found that the more I talked about it the more unsettled I became. It made a reality that you didn't want to be in, more real. All you want is to be normal and for people to look at you and talk to you like none of this is happening. But, that is impossible because people care and want to know. As many of my network of supporters said, the more they knew about me on my journey it helped them know how to pray for me. Therefore, I wasn't going to argue. I'll take all the prayer petitions I can get.
This strange reality that I still struggle with, all came together for me yesterday. Let me first start by sharing some of the various scenarios that occur while out in public.
While browsing through a gift shop, I made eye contact with two ladies who asked, "are you a survivor?" I smiled and said, "yes, I am". As it turns out, these two ladies were sisters and one of them was a survivor herself. So, we chatted for quite a while and shared about our experiences.
When I went to breakfast with a very good friend and our daughters, someone I've known for over 15 years and had just chatted with on Facebook the day before, approached our table to chat...with my friend. She didn't recognize me, until I looked her in the eye and said something. She felt so bad but it was no big deal for me. It's the reality that I've gotten use to.
I have seen people in places and assume that they didn't recognize me. Only to find out later from someone else who also knows that person, that they did in fact see me but chose not to talk because they didn't know what to say.
While I was descending an escalator in a dept store, I happen to make eye contact with the older gentleman behind me. He had a big, jolly smile on his face and asked, "was it a hard decision to go with that hair style?" Of which I answered, "it really wasn't a choice". He was then very apologetic as I was telling him, "really it's fine, no big deal". He then went on to say, "I was going to tell you that you look really good with it".
So this is how it is on a daily basis. There is no way you see them coming or no way to know which one you're going to get. I've thought many times, at what time will I be normal, recognized by those I've know for years and no longer notable by strangers.
Yesterday, I learned that I may be in control of that decision to a certain degree. As I was making a quick stop in a ladies clothing store to look for the perfect thing to wear for New Years, it all came together. My daughter and I whipped through the clearance rack, found several possible selections and headed to the dressing rooms. The store manager came over to unlock the door so I could try them on. As I'm trying on, I hear her say to my daughter, "is that your mom? She looks so great with her short hair, I love it." To which my daughter replied, "Yes, she does, but it really wasn't her choice." The woman asks, "is she a survivor?" My daughter says, "yes, she is." The woman says, "me too, twice."
So, I emerge from the fitting room in one of my finds from the clearance rack and engage in conversation with my fellow survivor. Seconds later, the fitting room door to my left opens and out steps a woman who says, "me too, three times." We all start to laugh together in disbelief.
These ladies could have chosen to be normal and not notable. But I am so thankful that they bravely chose to speak up and share. The three timer to my left was a breast cancer survivor. She says, "lets join hands and share our positive energy." So, we did. As we cheered for each other and our successful journeys we are quickly joined by a young lady who just entered the store. She was not much older than my daughter. She is sporting the very same hair style as I am, style by chemo. She joins us and says, "hey, me too." She had just finished treatment for lymphoma in October. She was walking by this store, had never been in there before and for some divine reason, felt compeled to enter and there we were cheering. I decided we need a picture, this was so unbelievable. What an amazing experience of hope.
My daughter took our picture, and asked for the e-mail addresses of our new friends. I sent these ladies an e-mail with our picture attached. It would be so great to stay in touch and share our stories of continued health and success.
Being a cancer patient is something no one ever would want to be identified as. But, because of your new identity you have opportunities to meet the most amazing people. I think I will always chose to meet and identify with these people whenever I can.
Saturday, December 25, 2010
The Mission
Just the very word cancer, is not a word anyone wants to hear spoken. Whether it's from the mouth of a friend who heard about another friend, from the mouth of a family member about that family member or another family member, from the mouth of a doctor about you. They say it's always harder on the caregiver of the person with it, than it is on the person who has it. I never believed that to be true until it was spoken to me...by a doctor.
The person with it sets themselves on a mission to get through it as quickly as possible. My mantra was, "the faster I run, the quicker I'm done". They get busy about this business. While the people watching can't do much but support that person in whatever ways they see fit. But even harder on the side lines, is to watch that person struggle mentally, physically and yes even spiritually.
Many interesting thoughts, ideas, understandings and acceptances occur in your mind from the moment there is a suspicion that you might have cancer. Once you have it, you have it.
For now, I have no reason to believe that there are any active cancer cells living within me. But once you do, it's something that will always be a part of you. I have had many experiences living through the cancer journey that, despite all the reading I did to prepare for whatever was coming next on the journey, I never found written about. And yet, these experiences were significant enough to me that I decided to put it them writing.
The person with it sets themselves on a mission to get through it as quickly as possible. My mantra was, "the faster I run, the quicker I'm done". They get busy about this business. While the people watching can't do much but support that person in whatever ways they see fit. But even harder on the side lines, is to watch that person struggle mentally, physically and yes even spiritually.
Many interesting thoughts, ideas, understandings and acceptances occur in your mind from the moment there is a suspicion that you might have cancer. Once you have it, you have it.
For now, I have no reason to believe that there are any active cancer cells living within me. But once you do, it's something that will always be a part of you. I have had many experiences living through the cancer journey that, despite all the reading I did to prepare for whatever was coming next on the journey, I never found written about. And yet, these experiences were significant enough to me that I decided to put it them writing.
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