Saturday, August 20, 2011

My blog has been published!

My "adventure" continues, but in a new way. I have published my blog and it's now a book! It's still called, "Marcia's Marvelous Adventure", but with the added sub-title, "a cancer survivor's journey through chemo and beyond". It is available in paperback for $14.99 at the following website: cheshirepress.com. When there, go to Library and then Memoirs...and there I am! (I also have some copies of my book at home, for anyone local to buy...and I'll autograph them!)

I have been asked if I am going to start a new blog, and I've been thinking about that. I'm going to become a grandma in October, so this might be just the thing to write about! It will be a much happier adventure to be on, and full of many new changes in baby paraphernalia and "how to's" since I had my own babies.

In the mean time, thank you all for being followers of my marvelous adventure. I hope that good health and a happy life can be an adventure we all share now.

And, stay tuned!

Saturday, July 9, 2011

Afterward

It’s been a few months since I posted “Making lemonade” and I’ve had a few more hairs add themselves to my head during this time. Imagine my surprise! I had the opportunity to visit sunny Florida earlier this year and that’s when I first noticed the sprouting begin. Granted, there’s still not a lot of hair, but I finally have some definition to my head…sort of like a peach does. I now have lots of baby fine fuzz all over my head, sprinkled with grey and brown.

I also am seeing some itty bitty eyelashes appearing, and a few light colored eyebrows sprinkled along my brow line, but nothing you can really notice. What you’re really seeing is the eyeliner around my eyes, not the lashes, and my eyebrows have been carefully applied with a brush and powder.

I am wearing my wig less and less, now that it’s warm outside. Except for times when I want to dress up a little more, I prefer wearing hats, or just going bare-headed. I’m still a little self-conscious when I first go somewhere in public bare-headed, but I’m probably more aware of my baldness than anyone else. I don’t know who I think I’m fooling, though, with my hats…it’s obvious that there’s no hair underneath them. But I guess that they’re a security blanket, of sorts…they add some definition to my head. What’s funny is that I am so used to seeing myself in the mirror bald or with a hat on, that when I do opt to wear my wig, it’s like greeting an old friend again. I find myself thinking, “oh, there you are…nice to see you again.”

The cutest thing happened to me the other day while at the beach spending the afternoon with friends and our families. After about two hours into our time together, their three year old grandson suddenly stopped playing with his truck, looked straight at me and said, “you don’t have hair”, to which I answered that he was right…that I used to have hair, but I had to take some medicine and it made my hair fall out. He simply said, “oh…my mommy has hair,” and then went back to playing. If only life was as simple as that of a three year old!

Do I miss my real hair? You bet. I still find myself admiring haircuts and colors, and thinking to myself that if I had hair I would be a redhead again, and have feather extensions put in. Does it make me feel bad when people talk about their own hair when with me? Not at all; I don’t give it a second thought. You see, in my own mind I still think of myself as having hair, so I totally empathize with anyone who is talking about their hair. There’s no need to tiptoe around the subject or apologize when it happens.

What really matters, is that I am healthy again and feeling great. My doctors tell me that I am cancer free and only want to see me every 3-6 months for the first two years after surgery and chemo, just to check in with me. There will be no more blood tests or mammograms, which is a little scary, but I have been told that this is the new protocol and that I can come in to see them at any time if I have concerns.

I feel like I have been given a new lease on life and am making up for lost time. I am physically able to do everything that I did before cancer and chemo, with almost the same energy level. I am walking the full three miles again with my walking buddies, as well as playing tennis and golf, and rejoice at being tired for a physical reason.

What has really surprised me about my “adventure” has been the number of people who have told me that I have been an inspiration to them. I never gave it a second thought…this is life; you just learn to roll with it. I know that I had it pretty easy as far as having an early diagnosis and being able to tolerate the chemo. But I’ve always been one who “puts on a happy face” rather than dwelling in “poor, pitiful me” thoughts. Negative thoughts never do anything but generate negative energy, which is counter-productive, especially when you have a battle to win.

The best thing that this view of life has enabled me to do is to reach out to others who have a breast cancer diagnosis and offer them my support, as well as my own experiences. I don’t claim to have all the answers, nor do I see myself as some sort of cancer guru. I am, simply, me. Do I get tired of dealing with cancer all the time? Yes, but the reason is because it grieves me to see so many women being diagnosed, at all ages, every day. On the flip side, though, it is a constant reminder of how fortunate I am to be a SURVIVOR! And so I see this as my opportunity to pay it forward.

What has allowed me to persevere through my own “marvelous adventure” has been my acceptance of what was put before me, a steady belief in my doctors and surgeons, a strong faith, the love of my family and friends, and a positive attitude. A friend sent me a wonderful little anecdote by an unknown author entitled, “I Intend to Have a Great Day,” that really sums up what I believe to be true in life. The last part of it goes like this:

Attitude is everything.
Have a great day!
Be kinder than necessary,
For everyone you meet is fighting
Some kind of battle.

Live simply,
Love generously,
Care deeply,
Speak kindly…
Leave the rest to God.

Wednesday, April 13, 2011

Making lemonade

Saturday morning I hosted a coffee at my house. Invited, were three women who also have had breast cancer, gone through chemo, lost their hair, and waited expectantly for it to grow back in. And then the unexpected happened...it didn't. No one tells you that possibility before you start chemo. I can understand why...it would probably deter many more people from undergoing chemo, given the side effects we already hear about. But it makes me wonder just how many other women are out there who's hair has not grown back, and are hiding beneath their wigs.

We spent the morning getting to know each other...laughing together, as well as sharing cancer and treatment stories. It was a wonderful feeling being able to talk freely with eachother, knowing that we all totally understood and empathized with the cancer journeys we had each embarked on, and the shock and disappointment we each had felt when our hair did not grow back as expected. I greeted them at the door bare-headed, which I think surprised them. But by the end of our visit they each, singly, took their wigs off so that we could compare hair...or should I say lack of hair...and wigs with each other. We learned alot about, and from, eachother.

What's interesting is that none of us is completely bald...our hair is just very, very thin and wispy...nothing you could style in any way. They've grown their hair out, while I've kept my hair very short all over. They've been post-chemo for two to four years, while I am just a year this month. We all had different chemo "cocktails" and some had radiation as well. There was no common denominator between us, other than cancer itself. We are just part of the unlucky 10% whose hair doesn't grow back after chemo.

We all have grieved for our hair in different ways. We have tried lotions and potions and vitamins and special ionized hair brushes and stimulating head massages. Anything that sounded in the least bit viable, we have tried. Some have seen a little improvement, but for the most part, our hair remains the same...thin. Even our eyelashes, and eyebrows...thin (or almost non-existent). But at least those can be colored in...or tatooed. That was a whole other discussion...

What impressed me the most about our being together was the bond that was immediately felt by all of us. We were brought together by coincidence and fate, and became instant sisters because of it. We share a common positive attitude and curiosity, and have each turned our own "lemons" into "lemonade". I am thankful to have found these wonderful women to share my latest journey with, and know that we will continue to meet and encourage eachother, as well as any others who may come our way.

Before they left, I gave each of them a pair of "diamond" earrings...some "bling" to wear. I told them that we all need a little "bling" in our lives, especially when we're in the midst of the dark days of cancer, treatment or hair loss. This has become my new mission...to try and brighten the days of other women who are going through cancer or treatment with the simple gift of "bling". And it worked with them...they were all smiles.

Friday, February 25, 2011

I think I flunked my eye exam!

In school, I never was very good with multiple choice questions. They all sounded like they could be the correct answer, with just a little variation to make them tricky. That's how I felt after having my new lenses put in my glasses...I think I chose the wrong answer. I'm not sure if I chose "one or two", "two or three", or "three of four", but whichever one it was, I was still struggling with reading and my eyes were tired and strained all the time. I tried my best to get used to them for a couple of weeks, but I finally had to call my eye doctor and admit that I thought my lenses weren't correct. I had chosen the wrong answer.

I made an appointment to go back in and get re-tested (oh, no!) and, sure enough, came up with a different "answer"....about two "clicks" less than before. So Lynnette kindly re-ordered my newest prescription for me (you're allowed to send them back once if they're not just right) and ten days later they came in. At first, I thought they were the correct answer this time. But after another couple of weeks, I wasn't sure that these were working as well as hoped for again. I was still having to adjust my glasses up and down my nose a little, and my eyes were still getting tired. So, once again, I called Lynnette and asked her if she had kept my other new lenses. She said she wasn't sure...that she might have thrown them away, but that she'd check and let me know.

Two days later she called to tell me she had found them...in the trash! She had rummaged through their trash bags and found them. I was so thankful...but embarrassed! I had turned my doctor into a dumpster diver! Fortunately, it didn't come to that, but only because their dumpster had recently been emptied. We laughed, and then agreed to a time when I could go back and have her put my recently recovered lenses back in my glasses.

To make a long story short, my "dumpster lenses" are still not the correct ones...I'm back to choice # 2 again, after trying choice #1 and having sore, red eyes after wearing them. I'm wondering if my dry eyes are affecting things for me, as they certainly contribute to my eyes feeling tired, as well. In the meantime, I have another appointment in April to re-check my dry eyes and possibly have plugs put in, and Lynnette said that we can re-test my eyes again for vision as well. I hope it's not multiple choice!

Saturday, February 19, 2011

Sore buns, but happy heart!

Well, I made my television debut yesterday and I think it went well! The interviewer, Tim, was very easy going and I hardly even realized that we were being taped until it was all over. There was no calling out "lights, cameras, action" to warn me...it just started as an easy conversation with the microphone suddenly pointed at me. Probably my most notable quote that they extracted and used from my interview (they cut and spliced three individual interviews together) was when Tim asked me what my expectations were from doing the cycle challenge, to which I answered, "sore buns". Probably not the answer he was looking for, but I couldn't help myself...it just came out!

This morning was our time to ride. Rich and I shared one bike for two hours, switching every half hour, while our son-in-law, Matt, brought in his own bike to ride on a trainer and rode for an hour and a half. We were entertained and kept pumped up by a live band made up of teachers from West Ottawa called Staff Infection, who volunteered their time and played all the hits from our era and more. The time passed quickly because of them, and I can't really complain of having sore buns! The room was full of 50+ bikes, not including bikes that were brought in and put on trainers by individuals, and it was an amazing sight to see. Having never done a bike-athon, I didn't know what to expect...how are all the bikes lined up...where does everyone fit when not riding...where do the supporters go?

We were lucky and were in the front row, so we had space in front of us to pull up a couple of chairs to sit on when not riding. The group next to us sat on the floor and played Uno while waiting their turns. But if you weren't in the front, there was only enough room for the rider and maybe one other person, but you wouldn't want to stand there for long because everyone was so close together. So when you're assigned a time slot, that's really your own solo time to ride. A time to just pedal hard and enjoy the view! Volunteers continually walked through the room with trays full of goodies...slices of bananas and bagels, cookies, energy bars, snack mix...and there was also water and Gatorade available. All you really had to do was show up and pedal...the organizers and volunteers thought of everything else.

All in all, it has been a wonderful first experience for me...I plan on participating again next year. And, as always, events such as this touch my heart...with gratitude for my own happy ending, and for the hope that is inspired by the efforts of so many wonderful people working together. Thank you, everyone.

Thursday, February 17, 2011

Who's that FOXy lady?

This weekend is the 24 hour Ultimate Cycle Challenge to raise funds for cancer research. Teams will be riding bikes for 12 and 24 hours, and I have the priviledge of having a team organized and named in my honor by my friend, Betsy. It's called Marcia's Marvelous Milers! Because of this honor, I thought that I should ride with them, even though the thought of riding a spinning bike for an hour sounds grueling! But I've been told that "coasting" and other forms of resting are allowed, so I know that I will do just fine!

Another good friend of mine, Tom, is on the Challenge committee and asked me if I would agree to be interviewed by FOX-17 News on Friday afternoon for their 10:00 news report that night. They want to interview a couple of survivors who are participating in the challenge and Tom thought of me immediately. Now I just need to lose about 10 pounds before tomorrow because they say that television adds weight to how you really look! Actually, it's what I'm going to wear that I can't decide on...should I wear my bright pink "warrior" tennis shoes and bright pink shirt, or should I be more demure and wear my electric blue shirt and blue & black tennis shoes??? Which color would de-emphasize my sure to be "red as a beet" face as I'm interviewed (it's a phenomena I can't control...when I speak in front of people, the heat rises to my face and I turn beet red). I guess you'll just have to tune in tomorrow night and see which look I decide on!

P.S. Has anyone else noticed I seem to have a thing going on with foxes?

Wednesday, February 9, 2011

It just blew in from the Windy City...


Back in December when my oncologist told me that my hair would probably not grow back any more than it is now, Rich immediately sprung to action. He made a few phone calls and, through a friend of a friend, found a wig salon in Chicago that specialized in custom made wigs. Since my baldness doesn't seem to be just a temporary condition anymore, he wanted me to get a really good wig, customized to fit my head exactly, at whatever cost (well, he probably would have drawn the line somewhere).

I was able to check out the website of the salon, and was amazed at the video they had which showed models wearing their wigs...they looked so real! You could even see their "scalps". The bio of the owner, Brian, said that he had become bald at the age of 14, and so was at first self-taught in the wearing of hairpieces, and then went on to school to learn more about the world of hairpieces and wigs...fitting, cutting and customizing. So he not only talked the talk, but also walked the walk. And he was especially dedicated to helping cancer patients who had lost their hair from chemo. He sounded like just the person for me.

As it happened, Rich was going to be in Chicago on business in early January and I already was planning on joining him, so I contacted Brian's salon and made an appointment to see him. His partner, Jeff, answered the phone and, after hearing my story, asked me to send them a picture of myself before I lost my hair so that they would have an idea of what look I was wanting to recapture with a wig. (I sent them a picture of me as a redhead, of course!) As we're chatting away, he asked me which hotel we were staying at, and when I told him, he said that it was within a few blocks of the salon, and very chic and hip. He then advised me to wear black and leave my "Michigan clothes", i.e. fleece, at home, so that I would fit in! Evidently, his memories of visiting Holland and Douglas are of people wearing fleece, even though it's summer when they visit. I laughed, and promised not to wear any fleece, while actually thinking that maybe I would wear it to my appointment, just to spite him!

Like the dutiful person I am, I wore black to my appointment instead of fleece, but I would have anyway...it's Chicago, afterall. Plus, it's just easier to pack. Jeff acted as if we were old friends when Rich and I arrived and took us back to a private room where we met with Brian. They both were impressed with my Holland wig and thought it looked very natural and real on me, which made me feel good. But I still wanted to try on one of their custom made wigs, to compare it with my own "off the rack" wig.

The first wig they had me try on was dark blonde and shoulder length...not exactly the short red head look I was expecting. I tried it on for them and it looked horrible! I told Brian that this was not the look I was wanting. So he went out of the room and then came back with a short, dark brown colored wig which he placed on my head. Whoa...I looked like a vision of my mom with her full head of hair! It was kind of curly, too, but still wasn't the look I was wanting. I was beginning to wonder if they had even looked at the photo I had sent them before my appointment.

And then Brian showed me the magic of steam. Using a clothes steamer, he showed me how to straighten the hair of a wig, or curl it. When I asked about steam melting the hair (these are still synthetic hair wigs), he said that steam is a wig's best friend...you can create all kinds of styles with steam. It's dry heat, such as ovens, that melts wig hair. So, in minutes, the wig went from curly to straight and looked much better. But it was still too much hair for me, and the fit wasn't quite right, so Brian took if off of me and left the room again to do some more magic to it, this time with needle and thread. When he came back, he put it on me again and it fit like a glove. After running my fingers through it (it felt almost like real hair, unlike my other wig) and playing with it myself, I decided that this was the wig for me...let the cutting and styling begin. (He isn't able to keep a large inventory of wigs in the salon due to space, so only has certain "stock" wigs to try on that can be customized to whatever you want.)

The scary thing about having a wig cut and styled, is that it doesn't grow back like real hair does if it gets cut too short. So it was hard for me to see the scissors darting in and out and hair falling to the floor. At one point I thought he had cut too much from one of the front sides, but then Brian explained that these wigs are made with all individually hand tied hairs, and that he had someone who would add hair back if I wanted, as well as add the red and gold highlights that I had decided it needed. Amazing. So, once the styling was completed, I left the wig with Brian to send out for highlights and additional hair.

It was two weeks before my new wig arrived, but it was worth the wait. The highlights are perfect and add just the right amount of redness and gold to it, and the fullness it has is something I always wished my own hair had had. But the best part is how well it fits and how good it feels on...I can almost forget there's a wig on my head. There's no slipping or sliding on my head anymore and no wig liners to have to wear underneath as with my other wig. This wig came with it's own anti-slip strips sewn into the front and the back of it, which keeps it secure on my head without any added bulk. It makes me wonder why all wigs don't have this sewn into them...it seems so simple.

I'm fooling a lot of people now and feeling good about how I look with my new wig, as I wear it all the time. It feels secure on my head and I can even wear hats or headbands with it...I just have to remember to hold on to my bangs before taking them off ,or everything comes off! But even though it does feel like it's a part of me now, I'll still be doing what Brian calls "the wig walk" and keep my head lowered on windy days...it's still a wig, afterall!

Tuesday, January 18, 2011

Eek...a mouse!

I lost something yesterday that had been with me for the past 14 months, helping me to get well again...my port! At 5:00 p.m., I was ushered in to a surgical room at my surgeon's office, told to remove my clothes from the waist up, and to put on one of those lovely cotton surgical tops that tie in two places, but don't really keep you covered or warm. My attending nurse, Amy, was already a friend...another "sister" and breast cancer survivor who had been part of the six of us chosen and photographed for Dr.Liberty's Relay for Life team.

Rich came with me, despite my telling him it was not a big deal, but he wanted to be there to see the "finish line" with me. He made himself comfortable in a corner chair in the room and soon Dr. Liberty came in. It was like old home week, with the three of us girls hugging and congratulating each other for reaching this milestone. My examination table soon became my surgical table, as Dr. Liberty lowered me down so that I was lying flat on my back, ready for surgery. I was to be fully awake, which had surprised me when I first made the appointment. I was certain that it would be a bloody affair and I might bleed to death, but Dr. Liberty assured me that it would be all right, and that she hadn't lost anyone yet!

She proceeded to give me several shots around the port to numb the skin on the surface and below, draping the area with several cloths, all the while chatting with me and Amy. We chatted back and forth about hair, lack of hair, eyebrows and eyelashes, dogs and puppies...at one point Rich piped in that he was glad he wasn't a girl! As we talked, Dr. Liberty cut open my old incision, snipped away at the scar tissue that had grabbed hold of my port and, before I knew it, my port was out...I didn't feel a thing! And I was kind of disappointed because I didn't see a thing, either. I had been kind of hoping for one of those mirrors that dentists have where you can see the site they're working on, but this room didn't have anything like that. I also had been forwarned that I might feel the port's line come out of my vein, as it was about 8 inches long, but I didn't feel any of that, either. It was like magic, how easily and painlessly it all came out. A few stitches later and it was all done.

I asked to see the port, as I had never seen anything other than a picture of it after it was put in me. It looked like a miniature computer mouse, tail and all! It was about the size of a hershey kiss, but heart shaped, and with a thin tail. Rich asked me if I wanted to take it home with me but I said no, thinking it might seem weird to do so. But I'm wishing now that I had taken it home...it would be a great show and tell!

Wednesday, January 12, 2011

How dry eye am!

Yesterday I went to the eye doctor for a routine visit, but also because I've been having trouble reading and know that changes in vision can be a side effect of chemo. I've noticed a problem since I started chemo, but it seems to have gotten progressively worse lately. I find myself adjusting and re-adjusting my glasses up and down my nose, and finally just give it up and read until my eyes are too tired and blurry. Not a very pleasant experience for someone who loves to read as much as I do.

At my exam, I learned that one eye's vision hasn't changed but that the other eye has, and so the two of them have been fighting as to who the brain should be listening to when I'm reading. After choosing the best lens between choices "one or two, two or three, three or four", the right correction was determined and it was as if I had put 3-D glasses on...everything was clear again and popped right out at me. It was wonderful!

As we moved on to the "dilated eyes" part of my exam, my doctor asked me if my eyes felt dry, to which I answered, yes...all the time. She said that it looked like my tear ducts were clogged, and also that my oil glands were all dried up, which had caused scarring inside my eyelids...all compliments of chemo. I also had some crazy eyelashes on my lower lids that were turning upward, rather than down, and were poking me in the eyes. I told her that must be the reason I often feel like I have sand in my eyes, on top of their feeling dry. She said she would like to pull them out for me, so she numbed my lower lids and, using her magnifying machine to guide her, plucked out the crazy little eyelashes for me. Ahhhh, no more sand.

While on the subject of eyelashes, I asked her what she thought about the drops that are advertised to increase eyelash growth, and if they really work. She said just what I suspected she would...that they do increase growth on eyelashes that already exist, but don't cause new eyelashes to grow. Just like the hair growth products for your head, they only increase growth of hair that is already there. So, like the hair on my head, I guess my eyes will be "bald", as well. But thank goodness for eyeliner!

She prescribed a couple of kinds of drops for my eyes, to lubricate them and to help with my tear ducts. I told her that one of my most annoying side effects during chemo had been the constant tearing of my eyes, and now here I am having dry eyes...talk about opposite extremes! She smiled and then told me that actually they're one and the same...that my tearing eyes had been caused by my having dry eyes. Go figure.

Monday, January 3, 2011

Bring out the hats and horns...and pass the candy!

Today was a red letter day for me...it was my last day of chemo! Rich took the afternoon off from work to go with me and, as usual, the place was full...hardly an empty seat to be found. The private rooms were all taken, leaving us to take two of the last chairs available in the general sitting area. I've become accustomed to sitting out here with the other chemo patients over the course of time. Many of them I see each time I'm there...some are older, some younger, and some are obviously sicker than I am. They are there alone, or with a family member or friend. We all have our little routines and sometimes share our stories. Today I overheard a man tell his wife that he hoped that he would be given a reason to live...to which she quietly answered, I am here and I am your reason.

Being there never fails to make me realize how fortunate I am...to have found my cancer early, to have health insurance to pay for the needed surgeries and chemo, to have the strong support and love of my husband, family and friends. I am thankful for every day and for how little I have had to suffer. I am reminded again of how trivial hair is in the big scheme of things.

Before my appointment, I went downtown to the candy store to buy a box of candy to take in to the oncology nurses as a thank you for all of their TLC. I asked for a five pound box, to be filled with all of my favorite chocolates...double dipped malt balls, milk chocolate covered peanuts, bridge mix, and dark chocolate covered peanuts. It was a smorgasboard of chocolates! When I got to the oncology center, I gave it to Wendy, my nurse throughout my treatments, and asked her to share it with all of the other nurses there. There were oohs and ahs to be heard as they picked out the candies they wanted...it was a universal sound of thankfulness, both given and received.

Forrest Gump had it right when he said that life is like a box of chocolates...you never know what you're gonna get. I think I've got it pretty good!