Category Archives: What’s my cancer story?

What makes me write about cancer? How did I feel when I heard the news?

Chemobrain…my secret shame

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chemobrainI suffer from chemobrain!  Gasp… I said it out loud.  I sort of hinted that I have some memory issues with my closest friends, but I have never gotten on a computer and typed those words out for the whole world to see.  My goal, I guess, is to try to reach other people who may be suffering in silence.  Many of us are embarrassed to explain it fully to their bosses, or their spouse, or even their kids.  You may not know this, but everybody is not as understanding of memory issues as you would think.  I ask everybody not to judge those who are doing their best to: fill out necessary paperwork for their kids school; who are taking too long to make change for a cup of coffee; who leave burners on; who can’t find their hat, library card, or the gas bill that they had in their hand two minutes ago;  or who can no longer follow the directions on a can of soup.

I have been cancer free for six years, and I can tell you that I am a whole lot better than when I first started chemotherapy.  Back then, I saw the pamphlets in the clinic; all neatly lining the literature rack in the waiting room.  I thought I was an intelligent woman, so I ravenously checked every one of them out with the eye of a woman who had managed million dollar budgets and a large staff.  Worried about this new thing called “Chemobrain,” I discussed my concerns with my husband.  He dismissed the whole thing as one of those 300 risks that could possibly happen to when when you take arthritis medicine…or one of those erectile dysfunction pills.  In my actual appointment with the doctor, I was too freaked out about everything, so I never brought it up.  Later, I took all my nice pamphlets of nutrition, chemobrain, radiation therapy, and everything else back home, where I neatly filed them in a binder.

Things started out fine, but then got really strange around month three of my six-month chemo course.  Two horrible mom things stood out, causing me to freak out and worry.  Horrible thing number one was when my teenage daughter went to a friend’s cottage for the weekend, along with six other girls from school. The cottage was four hours away, and she was always a bit nervous about long visits.  I know myself enough to know that we would have talked about her concerns.  I probably would have said, “Don’t worry…Daddy can pick you up if it doesn’t work out!”  She’s smart enough to pack an appropriately filled suitcase, and I know my husband gave her money, because they had an expensive weekend filled with water parks, teenage dining and plenty of shopping.  Would you believe that child left on a Friday, came home on Sunday evening, and I didn’t recall that she had gone anywhere; until a month or two went by and another mom asked me if my daughter had fun! Holy crap…I totally blacked that entire weekend out!  Had the mother never ask me, it would have never entered my mind!

Horrible thing number two was when my husband suggested I join him and the kids in a board game that he invented.  We loved playing that game!  There was a board, dice and fun cards that had exciting pictures on them.  At one point in the game, you look at the picture on a card and you make a move based on whatever it was.  Long story short, I could look at the picture (let’s just say it was a cat), put the card down one second later, and then not remember that there was a cat on the card.  Holy crap, crap, crap!  That is freaking scary! What other things was I not remembering?  Thank God my husband picked up the slack, and just let me do whatever it was that I thought I could manage.  I couldn’t follow a recipe anymore.  I couldn’t balance a checkbook.  I couldn’t be responsible for signing the Friday Folders from my kids’ schools.  Thankfully, I had four kids at that time.  I had jumped off the corporate track and was working part-time as a Lunch Lady in my kids’ school; thankfully, with not a whole lot of responsibility.

The thing is, even when things are going amazing, stress can make us have memory issues.  Cancer just puts a whole wicked twist to our forgetfulness, so we may never even know what we completely lost.  I’m not saying that everybody will suffer from chemobrain, like I did, but there are quite a few people out there who are suffering in silence. People forget their kids at the library.  They forget what they came into the store to buy. Many cannot remember names, or recall relevant information that would have been easy to recall before. Sometimes it is embarrassing, and sometimes you just want to cry…or stay home.  It is sad, depressing and sometimes the people around you get really sick of the this constant problem.

I am going to tell you what worked for me, but I am sure that you can look up many different treatment options that would better fit your lifestyle.  Everyone is different, so every person’s chemofog is going to be different. If you are not suffering, then congratulations…but don’t judge anybody else!  Also, I am not a doctor.  I do not endorse any products, nor do I expect you to follow what I have done.  If you have questions, check with your own physician.

  1. Somewhere in one of my weird health books, I read that a natural doctor had good things to say about Resveratrol and Turmeric as a memory booster.  I really think that combo worked well for me, so I have been taking them ever since.
  2. Gingko Biloba.  This is widely recognized as a memory enhancer.
  3. Vitamin E, Fish Oil and all the good fats from nuts, seeds, and healthy oils (olive, coconut).  The brain needs to be lubricated to have all wiring working good, so this is not the time to be on a low-fat/bad-fat diet.
  4. Read books, magazines, newspapers, pamphlets, or whatever…and reread them if you have to.  Keep your mind fluid by reading words, looking at pictures, reading comics, wellness books, cookbooks, or anything else you can find.  Read to your kids.  I spent a lot of time doing detox baths, so I read for long periods of time in the tub.
  5. Do puzzle games like word finds, crossword puzzles and sudoku.
  6. Play games that make you sort and remember things.  My favorites are Euchre, Go Fish, Scene It, Old Maid, Spoons, Chess, Checkers, and so many more.  You might suck at it for a while, but keep with it.  It will help you out.
  7. Play games that make you be creative.  My favorites were Pictionary, Scattegories and Scrabble.
  8. Play video games that help you with hand and eye coordination.  We played Mario Kart, Guitar Hero, Rock Band, and Wii games of all sorts.
  9. Learn a completely new thing that you never did before.  I looked at it as though the pathways and connections were not working; almost as if it was an electrical current that didn’t connect.  The trick was to find new pathways and connections in another part of your brain.  You can learn a new language, learn how to paint or draw, or learn how to play an instrument.  You can take up writing poetry or making jewelry.  You can play video games by yourself or with your kids.
  10. Get outside and walk, think, observe the beauty of life and nature, and to find quiet gratitude time.

I attribute my mental recovery of doing all the things that I mentioned above.  Also, I personally learned the new language and technical skill of playing Guitar Hero with my children.  I started off simple, with singing vocals and watching the kids play the instruments.  The drums were too confusing to me, so I never really learned how to do them at all.  Eventually, I found my groove by playing the guitar, which became my new life saver.  I started playing on an easy level, but I worked my way up to an advanced category that even impressed my kids.  Somewhere over the next few weeks and months, my fingers and brain began coordinating together, and I suddenly didn’t have to “think” about what I was doing.  It became so natural for me to play all these great songs, even though they were not on my playlist (lots of super hard-rock stuff that my son liked!). Somewhere in my journey, I became good.  As my skills improved in everything, my memory started to become more reliable.

What’s the moral of my story?  Like all survivors, it is a personal journey for everyone.  There are parts that suck, and there are parts that suck even more!  I still take lots of vitamins and supplements to keep my brain lubed up.  I write blogs for other survivors, and that forces me to think hard.  I read and learn as much as I can about health and wellness, especially natural healing.  I write poetry, children’s stories and I love to make homemade greeting cards.  I couldn’t follow a recipe for almost year and a half, but now I am back in the groove of cooking and making up recipes for delicious foods.  I still play kick-ass guitar in my basement, and it always makes me so happy to have something fun to do with my kids.  Games are fun for me again.  Things feel mostly “normal” for me.  In fact, my oldest daughter was studying intelligence in college.  She wanted to do a session with me, which determined intelligence and processing time.  I got every single question right, but it took me a lot longer than the average person would have taken to get to the answer.  I may never be as quick to process as I was before cancer, but I know I will eventually get there.  I cut myself slack and remember that I am alive.  As of today, I still plan to do everything I can to keep my brain and mind loose as a goose and ready to learn.

 

 

My move towards alternative health and wellness…

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alternative healing picsIt is spring of 2014 and I truly feel amazing.  I have turned fifty this past year, so I feel like I am in a different stratosphere of my understanding of everything.  My kids are getting older, I have taken a job in a completely different industry, I have learned to “let go and let God,” so I guess it would only be natural that my world views on health and wellness would have evolved as well.  Way back when I was diagnosed, I felt too afraid to trust anything other than what the mainstream health practitioners had to offer me. It was 2008, and my cozy little world had shifted off its axis.  I was too busy coping with family and job, and I was really good at feeding my mind and body with emotional regret and toxic relationship anger.  I certainly was not savvy enough to educate myself on the many protocols that were out there to help treat cancer, and I don’t think I was in the emotional state of mind to be open to them.  My sister tried to help me, opening my mind to things that I could easily incorporate into my standard health practitioner’s plan of chemo and radiation.  She encouraged me throughout my journey, helping me to stay abreast of new treatment options that she learned of.

It has been six plus years since I was first diagnosed.  I have grown on many levels of health knowledge, trust in alternative options and in my general understanding of many aspects of my life.  It has taken me a few years to come to the comfortable place where I am, but I feel I am in a better position to talk about treatments that worked, or about how I feel more confident offering hope to those who are currently scared and lonely.

The Internet has changed everybody’s world perspective.  Where once you might have felt alone and terrified with your diagnosis, now you have a handy tool that brings you to alternative views of like-minded people, and it feels amazing! Soon you find someone who you like to listen to, who knows exactly how to rock your world with knowledge and hope. The Internet has opened up a super highway of health and wellness.  It gets you exactly where you need to go, giving you the exact information that you personally need at that moment in time.  I am not saying that everything that you find will be perfect for you, and some things may not even be healthy, but it certainly will open up your mind to what other options and ideas are available.

Alternative health and wellness ideas are everywhere.  Start with a doctor or person whom you learned about on one of your favorite shows, or maybe whom you may have read about in a book or newspaper.  See what great tips and information they have to offer, and then look at the people that they follow on-line.   Key in a subject interest in your computer and see what information turns up for you to investigate.  Pretty soon you will find patterns emerging, where information connects and overlaps from one reputable source to another.  Depending on your situation, you can start by including one or two alternative options into your doctor’s existing treatment plan, or you can jump head first into some amazing alternative protocol that you know will be helpful to you. Believe me when I say this, “someone has already done the research on whatever you are looking for, and you will be utterly amazed by what kind of information you will find!”

Do you have some kind of skin cancer that is making you terrified?  There are oodles of pages devoted to black salves and snakeroot.  Do you have breast cancer…or pancreatic cancer?  Did you know that many people are treating it with massive changes to their diet and lifestyle?  Have you heard your brain cancer is totally untreatable?  There are qualified people who probably have been treating your kind for years, very successfully I might point out, and it may be more affordable than you think.    

I feel as though cancer is the impetus to change your life.  Cancer has been around forever, but our cells were purposely designed to see it and gobble it up before it became a problem for us.  A body that is healthy on every level is a perfectly built piece of mystical machinery that can and will heal from whatever is troubling it. Unfortunately, we are living in a world filled with toxic everything.  Our water is chemically treated to make it drinkable. Our foods have been genetically modified so that they are altered in a way that is not natural anymore. The things that we groom our bodies with are not recognized by our cells when we slather or spray them on.  Our emotional selves are crippled by lack of sleep and too much emotional toxic overload.  Nutrition for many people is now received at a drive-through or gas station.  Is it any wonder that cancer will strike one in two men and one in three women?

If you find that your world has shifted off its axis, I am truly sorry for you.  It is a blow that will cause many people to lose hope and eventually die.  For others, however, it will be the brutal slap in the face they needed to start making the changes necessary to bring them into a healthier universe.  I encourage you to not become paranoid and give all your power over to traditional doctors.  Our current healthcare industry is slightly skewed by a capital market that is feeding institutions all over our country.  There is a ground-swell of people fighting for changes that recognize the many protocols that will save lives.  Will it be my generation that brings about the health and wellness improvements that so many people are craving for?  I think not!  But I am doing my part in educating my children about what our world needs, because I firmly believe that it will be “their” generation that will bring about world healing on so many levels.

Let today be day one in your healing journey.  Take your first step forward by not being so afraid.  I only wish that someone would have told me that when I was first diagnosed.

From one survivor to another!

How did I find out I had cancer…

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I am a wife and mother to four crazy kids, ranging from the delightful “tween” years, all the way into early adulthood.  We live in a wonderful white farmhouse out in the country, with green fields on one side of us, and beautiful marshland on the other.  I have a great job at my kid’s school, so I get to have all my summer’s off with them.  We spend our time playing board games and “Guitar Hero,” visiting the grandparents cool place up north, or just hanging around the house and doing mindless stuff.  For fun, I like to garden, read books, cook fun foods, and I have a passion for writing.  This was my life, and it was all so lovely and peaceful, until cancer quickly changed everything.

It all started in the fall of 07, when I just couldn’t seem to shake a bunch of strange problems that I was experiencing.  I had started the new year at school, but I kept having weird symptoms that didn’t seem to make sense.  I was so tired all the time; so god-awful tired!  I had a strange, persistent little cough that gradually intensified whenever I spoke too long or took deep breaths.  I had this annoying pain in my back and right shoulder-blade, which intensified as the weeks and months went on.  I would see doctors of all different types, trying to fix “this” strange  symptom, or stop “that” weird ache.  One night, right out of nowhere, I felt a huge lump growing out of the sternum area of my chest.  How long has that been there?  It was about a half an inch or more thick, and a little less than two inches in diameter, so I completely freaked out.  My regular doctor quickly explained this away as an inflammation of my sternum, or in medical speak was called costochondritis.  They always sent me home to rest, or try some remedy that they prescribed, but then another symptom would arise, which would send me back to see a different doctor.  I remember sitting on the sofa with my husband at night and just falling apart, because the pain in my arm was so intense.  I took a lot of over-the-counter pain relievers, which never seemed to help, and I would pack my arm in huge amounts of ice, because it felt a teensy bit better when it was practically frozen.  It was horrible!

Finally, I was referred to a thoracic surgeon, because my regular doctor said she thought I had some kind of “funny looking genetic thing” on an x-ray.  Thankfully, this man started to get the ball rolling, ordering an MRI to be done within two days.  When I met with him to hear the results of the MRI, I still assumed that it was costochronditis, and that it had probably gotten a little worse than it should.  Still, I wasn’t that worried, thinking it wasn’t anything that a serious course of antibiotics couldn’t cure.  I liked this smiling, dark-haired doctor immensely.  We were the same age, we both had four kids, and he seemed like an eternal optimist, like me.  Without a speck of distrust for this kindly doctor, I happily followed him as he urged me out into the hallway, where we could look at the MRI results on his fancy light-box.  With a trusting smile on my face, I looked up at the shiny box on the wall and blankly stared…too stupefied for words…too terrified of what I saw.

The first sign of panic that hit me was the instantaneous pounding of my heart, which felt like it would burst from my chest like a bomb.  My face suddenly felt hot, like it was on fire.  I stood a foot and a half away from the light-box, but I felt like I was experiencing one of those cinematic effects that a director puts in a horror movie.  Even though I didn’t move an inch from where I stood, I felt like the space between me and the light-box grew twenty feet apart.  Everything suddenly seemed so far away from me, and an oppressive black cloud started to close in around my peripheral vision, making me feel like I was in a long tunnel.  Behind me, people were walking to their own doctor’s appointment, completely oblivious to my newly altered universe.  I was aware that the doctor was still talking to me, but I didn’t recognize the language.  He was using his pen to point out interesting parts of my scans, and suddenly I knew without a doubt, “I am going to die from this!”

I have a bit of a medical background, because I had taken some medical transcription classes many years ago.  It was a year-long certificate program that would educate us on abnormalities and conditions that could arise in every system of the body.  We learned that a fish-hook stuck in an eyeball was probably not a good thing, and that “rales, rattles, and rhonchi” were all words that a doctor would use to describe how a heart sounds.  We also learned that huge, ungodly looking masses that grew inside your chest cavity, pushing into the spaces where your lungs and your heart belonged, were definitely not good.  We learned that people definitely needed their lungs to live, along with their heart, and that it would be advisable to not have ungodly looking stuff growing in there!  This was Medical Transcriptionist -101, and students who paid attention in class would have learned this on day four!

To make a long story short, “Amazing Thoracic Surgeon” immediately scheduled a follow-up meeting with my husband, “Just so we can all get on the same page…okay?”  In a complete panic, I went home and relayed every sordid detail to said husband and, like the good man that he is, he calmly told me not to worry, “You panic about everything!  Let’s just see what the doctor has to say!” and then we didn’t talk about it again, until that wonderfully reassuring doctor gave us a few minutes of privacy in his office.  And that was just after ushering my husband out to that infamous hallway of his, where he took us to go look at that pretty little light-box thingy on the wall.

“Completely caught off guard, and blown away!” was how I would later describe my husband’s grasp of the scans, and he isn’t even a trained medical transcriptionist like me.  The surgeon discussed the chances of it being cancer, “probably,” and he laid out the five different kinds that it could possibly be, ranging from some kind of lymphoma, “which will be your best bet” to a more deadly sarcoma, “well…let’s just pray for lymphoma!”  Then he educated us about the treatment plans for the five different options of cancer, and then, being the ever optimistic man that he is, he completely reassured me that he would do whatever it took to keep me alive, and I believed him.

The thing was, I could totally tell that this doctor liked me and my husband.  He said I reminded him of his wife, “She’s the glue that holds my family together!  I could die today and our children would be okay…but if she died…that would not be good!”   That man said a lot of stuff to me that day, although I can’t remember it word for word.  What I do remember hearing, however, was that if he had to hack me apart and piece me back together, in whatever manner that it took so that I could go home to my kids, he was going to do it!

Immediately, we scheduled the biopsy, and I went home to figure out how I was going to break this to my parents, and figure out all the details of my job.  But what was I going to do about our children?  How do you even begin this kind of conversation with your kids?  What do you say, and what do you not say?  It was all too difficult to deal with, so I remember going in my room to be away from them; I couldn’t control the tears and I didn’t want to freak them out.  I had a real problem to deal with, my youngest child.  She’s my precious, anxiety-laden six-year-old daughter, who has this unnatural obsession about me dying on her since she could string a few words together.  This has been her fear since day one, and all I could think about was, “Oh, my god…this is actually going to happen to her!”  Of all my children, this one couldn’t even let me go to the bathroom by myself, or not sleep in my bed with me.  Her dreams were never light and happy, just filled with dread and horror about waking up and finding me gone.  And now, it might actually come to happen to her?  What a cruel and merciless thing to happen to a child.  This would be devastating for all my kids, but she would never recover from it.  I knew it, and my husband knew it, too.  So very quickly on, I made it my personal mission in life to kick this cancer in the ass, so I could pull myself through for her.

About three days after the biopsy, “Amazing Thoracic Surgeon” called me up with the news, “Hey…I’ve got great news!  I knew you couldn’t wait for this…it’s Hodgkin’s lymphoma!”  And we celebrated this amazing miracle, as then he confidently gave me the name of one of his very good doctor friends, which I will call “Hallelujah Hematologist.”

“Thank God,” I think I might have said, or something very similar.  I remember running out of the room and actually laughing for joy.  Then I called my husband at work, and then my parents, “Hey, guess what?  I got the good cancer!” I said, totally overjoyed about it.  They were ecstatic, and there was a lot of happy crying that day, which sounds kind of pathetic when you think about it.  I got the “good” cancer… oh, great!

“Hallelujah Hematologist” was better than the thoracic surgeon, if you can believe it.  From the second that I stepped into his office, which was on a Tuesday, at around 3:00 in the afternoon, his warm smile and his sense of humor made me feel like I was finally in with the right kind of people.  We looked at the MRI scans, and he reviewed all my previous medical notes.  We talked, and I cried a bit, and he reassured me about the process ahead.  Lab tests were ordered, including a bone marrow aspiration that he wanted done immediately, which sent me to the land of tears and fear.

“Um…she’s kind of afraid of that procedure,” my husband stated with one of those goofy-husband smiles, because I had already fallen to pieces in the car about this, on the way to the doctor, “What if I have to have that horrible bone marrow thing?”

The thing about “Hallelujah Hematologist,” (and this is the thing that I love most about him), he doesn’t want me to suffer, AT ALL.  He just wants this horrible journey to go as smoothly as possible, and he doesn’t want to do anything that would scare his patients or their families.  Pleasantly, his nurse came in and took me to a nice little room, where she administered a couple of mind-numbing injections  and then it was done (Well, I wasn’t a hundred percent sure, things just got all “gone” for me!).  We left his office about 7:30 PM that night, which also amazed me.  Were all the other Oncologists like “Hallelujah Hematologist?”  Do they routinely go over their normal business hours, providing this intensive and amazing care to all their patients?  Throughout this intensive ordeal, he made me feel super special, like saving me was the single most important thing that he could possibly be doing in the world that day.  Later on, my husband and I would go over this appointment in great detail with friends and family, still astonished at the outstanding “emotional” care that he gave us that very first day.

A PET scan was ordered for Thursday, although we had a lot of wrangling between our insurance carrier and the clinic (Do not get me started on insurance companies, I could write about them for years!), and I began my first chemo that Friday.  The plan was that I would come in every other Friday, and it would take about six months total, my doctor estimated, with a helpful course of radiation at the end of it, “We want to make sure it’s good and gone!”

After half a year of dealing with weird symptoms and all the wrong diagnoses, I finally started on the right path to my recovery in February of 08.  It wasn’t easy, and it only gets worse the longer that it goes on, but by Thanksgiving, I was feeling pretty good.  I was finally done with all my treatments.  I could eat food for the first time, in a very long time, where I didn’t have to throw it up, or not enjoy the taste of it, or where I could actually swallow it (radiation was such a total drag!).  By Christmas, I had fuzz growing on my head again.  I was tired and completely wore out, but I was alive.  I still have a little ways to go before I pass the 5-year anniversary mark, which in our cool posse of cancer survivors is “super cool,” and a “really big thing!”  To celebrate, I plan on going out for a major romantic dinner with my husband!

So far, all is still going amazing!  My health is good, although I don’t take it for granted like I used to.    I eat as healthy as I can, and I do a lot of “mumbo-jumbo” alternative stuff that I think really works.  I see my “Hallelujah Hematologist” two times a year now, and the last time I saw him, I came home and told my husband, “I am totally in love with that man!”  My husband doesn’t mind…because he is, too!