Radioactive, radioactive

About radiation-
Acute side effects occur during the treatment phase and typically go away a few weeks after treatment is finished. They include fatigue, skin reactions, and side effects specific to the area being treated. The most common acute side effect of radiation therapy is fatigue, a sense of tiredness or general weakness.
So there's that.
Radiation has not been a breeze for me.  I was more tired than I expected I would be.  Everything else has gone so seamlessly, I figured this would just be another blip on the screen.  Instead, I have found myself to be exhausted almost all the time.  The area of my radiation burns and feels like I have a wicked sunburn that continues to get worse because I keep getting back in the "sun" so to speak.
In all though, it's nothing.  I mean a little exhaustion, whatevs!  I have four kids.  I have been exhausted since 1993.  Burnt skin, whatevs!  I used to fry myself at Natasket beach every summer hoping to get that Bain de soleil for the St. Tropez tan.  (Do you remember that add?) 7 weeks of radiation everyday is more of a nuisance than anything else.  One delightful benefit of my radiation therapy was the little posse of gals I shared a time slot with each day.  Oddly the four of us were all teachers and all four of us had breast cancer. Two of the four had undergone chemo while two of the bunch had not.  As you know I was one of the lucky ones.  These gals lifted my spirits each day.  I loved seeing them and talking about our families, our careers and our faith. Each of us had a  positive prognosis and we all felt a sense of peace that our collective futures looked good! Sometimes if I was there early I would visit with another gal.  Her situation was dire.  She too had breast cancer, but her cancer had returned to other parts of her body.  She was undergoing treatment to prolong her life, not save her life.    Her three children at home were all school aged.  She knew many of the things she supposed would be part of her life and theirs would not be.  One day she told me she spent a few months in utter despair.  Everyday she lived thinking about dying.  Her attitude when I met her was one of happiness and light.  I asked her what changed in her.  She told me that she woke up one day and recognized how grateful she should be for each day she has, and just like that, things changed for her.   It's funny, we all say "no one is guaranteed a tomorrow," but do we really believe that?  I know I have always gone to bed  planning the next day's, week's, month's and even year's events.  Did I really ever consider how grateful I need to be for just today and the time at hand? More now than ever before I have gratitude for what is right now.  
Cancer has changed me in some ways.  Mostly for the better I think.

Chemo? No, thank you.

Most of you who read my blog already know that my cancer is estrogen  receptor  positive and progesterone receptor positive.  The cancer cells, like normal breast cells, receive signals from these hormones that promote growth.  That is why I am able to take the drug Tamoxifen, which blocks the production of estrogen, to lower my chances of recurrence. So even though I am able to take this drug to lower my risks of a recurrence, my oncologist had not ruled the possibility of chemotherapy as another precaution.  At one of my visits with her she ordered a test called an onchotype.  The onchotype test is used to determine the likelihood of recurrence.  The lower one's score the less likely it is that the person will have a recurrence.  I was in a position now that I knew radiation therapy was going to occur. My radiation specialist (who by the way looks like he could be one of Joey's friends- he's that young) was holding off on the start of radiation until we knew for sure about chemo.
Chemotherapy has always been the treatment I assumed every cancer patient underwent.  I was fearful of the thought of the treatment.  Hair loss, nausea and vomiting, nerve pain and extreme fatigue are all common side effects of the treatment. What a horrible list of likely happenings.  Also, my appointments at Comprehensive Cancer introduced me to many who were undergoing or had undergone the treatment.  These wonderful, brave, strong friends I was making were SICK.  I think that is what scared me the most about chemo. I have a secret to let you in on.  breast cancer doesn't make you feel sick.  Since the first surgery I have felt pretty much like myslef.  A little tired, a little emotional, but not really sick.  The only thing that made me sick was the dumb pain medicine and once I figured that out I just quit the stuff.  My cancer buddies at Comprehensive Cancer Center were sick and I was afraid I would be joining their ranks.
When I was a kid I used to get a sore throat every winter.  It was always my tonsils and until I had them removed in 7th grade I missed a week or so of school every year because of my illnesses.  I hated it.  I hated staying home and begged my mom to let me go to school .  I didn't like missing things then and I don't like missing things now. I hate being laid up.  On my days home I would get out of bed with everyone else in the house and put my clothes on.  That's a big one for me.  Getting dressed.  Being in pajamas all day was not, and still is not, an option.  When I get up I get up and get dressed. Even if it means putting on yesterday's clothes for an hour or two before I shower.  Do you remember when that  little girl Jon Benet Ramsey went missing.  Part of the case they were making against her mother focused on the fact she had on the same outfit two days in a row.  People thought this indicated she had been up all night and was somehow involved in her daughter's death.  I remember thinking, "What?  That's crazy.  She just threw her clothes back on because she didn't want to be in her pajamas while all the chaos was unfolding."   I just don't like hanging out in my pajamas.  In fact, funny story, the worst punishment my parents would give me when I was a kid was to get ready for bed early.  I can't remember what I did but I remember a time that I was being flippant to my mother while a little neighbor girl was over playing.  My mom sent the girl home and made me put on my pajamas right then in the middle of the afternoon.  I thought I would die. Anyhow during bouts with tonsillitis,  TV and books could keep me happy for an hour or two but inevitably I had to get up and do something.  As a kid I would work on projects in my room and even convince my mother to let me bake cookies.  Even if I had a fever my mom would always have my brothers bring home all of my school assignments. She knew I would be devastated if I fell behind in my work.
 Every so often, however,  like all school aged children, I would catch  a dreaded stomach bug.  These sick days were different.  There was nothing I could do to will away the nausea that would flood my body.  I remember distinctly lying on the couch with a big bowl next to me, a headache causing me to desire nothing but sleep, but being unable to drift off.  TV, books were of no use. No thought of baking or schoolwork entered my mind.  I would just lie there and be sick.   As I got to know my cancer pals and talked with them about their treatment it became clear to me that chemo was akin in some ways to that dreaded stomach bug.  Relief was seldom and throughout most of the weeks you just had to put up with being sick.  I guess I am not unique in thinking, "Chemo, no thank you."
So on the day I went for the results of my onchotype test I was relieved to hear I would not need chemotherapy.  My wonderful oncologist talked with me about her 16 year practice.  She said just ten years ago chemotherapy would have been likely in my case.  Today with all the research and work that is being done to develop targeted therapies for cancer patients she has seen a 60% drop in the use of chemotherapy in her own practice.  That's pretty amazing if you ask me.
So on to radiation I go.  Grateful that I will be spared what many are not.  Grateful I will be able to get up each day and get dressed. And eternally grateful to Dr Thummala, my oncologist who is committed to stomping out cancer, one cell at a time.

Like it or not, I have cancer

When my pathology reports came back after surgery number two, things looked good.  Here is my medical speak- Clean margins, no lymph involvement and my cancer is ER and PR positive.  ER  and PR positive means that my cancer gets its fuel from the hormones in my body.  This is a good thing because the drug Tamoxifen which blocks the body's production of estrogen, can be used to help lower the recurrence rate in cancers such as mine. 

The first visit following my surgery with Dr. Thummala she prescribed the drug and told me to start taking it straight away.  Neither Doug or I had ever heard of the drug so Doug asked her about the side effects.  Dr Thummala said something very cryptic in return along the lines of, "You believe that once you are married to someone it's forever right?"  Doug answered her, "Of course."  "Well," she said,"Tamoxifen is the only drug that your wife can take, and she needs to take it.So whatever the side effects are she will just have to put up with them.  Kind of like marriage, right?"  and then she laughed. 

When we got home I googled Tamoxifen.  I will post here some of the comments I found from women who are taking the drug:

A few weeks ago I started taking Celexia to combat anxiety and severe depression

I am feeling lots of dizziness and vertigo

WEIGHT GAIN??? Is there anyone who can succeed in losing weight on this drug.

Leg cramps!!! Wow....I've been on tamox for almost 5 months and have had mild foot cramps all along that I can stretch out to relieve.....but yesterday I had nearly debilitating cramps

Need advice on best bedding to manage night sweats! Waking up wet several times a night

Has anyone else found their hair is thinning on Tamoxifen

I've been on tamoxifen since August. Apart from the usual symptoms hot flushes, joint pains, headaches, insomnia and mood swings I've noticed rashes and dry itchy patches on my legs.

I've been on Tamoxifen for close on 3.5 years and have had chronic insomnia 

Been on Tamoxifen for a year now. After many attempts of working out at the gym and on a strict meal plan I am still struggling to lose weight especially around the middle section.

So, um, ya.  I was seriously scared to take the drug.  The list of side effects on the drug insert was as long as my arm and included all of the things mentioned in the comments above: anxiety, depression, weight gain, leg cramps, bone pain, night sweats, hot flashes, thinning hair, insomnia, mood swings, and rashes. The insert also listed more serious things like risk of possible endometrial cancer, cataracts, and pulmonary embolism.  These mild and more serious side effects are just a sampling of what's possible.  And what's more, on the message boards and in the facebook support group page many of the symptoms seem to be commonly had by many women taking the drug. 
I filled my prescription and then stared at the bottle for a few hours.  I have  a weird and irrational fear. (I mentioned it in an earlier post.) It has to do with the Tylenol and cyanide incident of 1982.  Anyhow, another little caveat, if you will, of my fear is I never take a new pill, be it prescription or otherwise , without a witness.  So I decided I couldn't start the Tamoxifen until Saturday when Doug was home.  That way if I had a strange or allergic reaction to the pill...okay, or it was poisonous, Doug would know what I had taken.  Is that the dumbest thing you ever heard?  I know it is, but it's been a very real fear of mine since 1982.  
In the days leading up to my first dose I prayed a lot.  I prayed that my side effects would be minimal.  I prayed specifically that I would not experience depression and mood swings. Okay, alright, I also prayed about the weight gain, but mostly I prayed about the depression.  Here's why.  In 2003 I had a miscarriage. I was only a few weeks pregnant and had been experiencing horrible morning sickness, and extreme mood swings during the weeks of my pregnancy.  After having the miscarriage I found myself completely depressed.   This was new to me.  I told you  my go to emotion on the negative side of the scale is anger.  Anger pumps you up.  I can do things when I'm angry. You should see how clean my kitchen can get with a little angry elbow grease. And because I can do things when I am angry I can sometimes work that anger into productivity and even better I can work that anger right out of my system.  But depression is different. It slows you down. It stops you dead in your tracks. It consumes you. So after I had that miscarriage I had my first ever experience with depression.  I wish I  had a songwriter's voice or poet's words so I could adequately describe how I felt during those few weeks.  There are few periods in my life that I would consider as difficult as those wretched weeks. I was completely despondent and unable to function.  I remember waking up each morning and for a just a second thinking, "Oh it's gone.  I 'm me again," but before the thought would take shape the dark mist would creep back in and envelop me.I didn't eat.  I didn't interact with my family.  I didn't read or write and perhaps most damaging, I didn't pray. One thing I distinctly remember from those weeks is this, my vision changed.  I mean it.  I felt like I was looking at the world through some weird lenses. It was as if  everything had gone dim.    I was lucky, though.  My sojourn into the world of depression was short lived.  
The pregnancy and miscarriage had caused a temporary imbalance of my hormones so in a few short weeks the fog lifted.  I was also blessed with an understanding husband who prayed for me morning and night.  He carried our family during those weeks and because of his creativity and diligence our kids were mostly sheltered from the ordeal.  Once I felt like myself again and returned to my routines I had the distinct impression.that I was given that trial so I would have an added measure of compassion when It came to others' struggles with depression.  Prior to my own season of sorrow I had always viewed depression as something one could will away.  I would think, "If she would just get up and get moving,"or, "She just needs to think positive thoughts," not at all comprehending the grip depression can have on an individual. 
So when I saw depression listed as one of the most common side effects of the drug I felt a great deal of trepidation. I still remember the despondency I felt during my short battle with depression and it was something I hoped to never feel again. 

Back to me staring at the bottle.  I realized not taking Tamoxifen was not an option because like it or not, I have cancer. This drug  greatly reduces the risk of  recurrence in women with ER (estrogen) positive breast cancer.  I had to take this drug and live with the side effects,whatever they might be.  I told myself if the dreadful and dreary mist of depression crept back into my life I would be prepared to address it as best I could.  In Elder Holland's "Like a Broken Vessel," he reminds us:

Above all, never lose faith in your Father in Heaven, who loves you more than you can comprehend. … Never, ever doubt that, and never harden your heart. Faithfully pursue the time-tested devotional practices that bring the Spirit of the Lord into your life. Seek the counsel of those who hold keys for your spiritual well-being. Ask for and cherish priesthood blessings. Take the sacrament every week, and hold fast to the perfecting promises of the Atonement of Jesus Christ Believe in miracles. … Hope is never lost. 

With that counsel in mind and my wonderful husband by my side I swallowed my first dose of Tamoxifen.  That was over a month ago.  

Exactly one month after Dr. Thummala gave me the prescription I found myself back in her office.  "How are you doing with the Tamoxifen?" she asked.  "So far, so good," was my simple reply.  I was grateful when she shared with me that most who experience the more dreaded side effects start to feel them shortly after they begin taking the drug. "I'm in the clear then?" I  inquired. "Seems you are," came her response.

So here I am, almost two months in, and I'm still feeling fine.  I am grateful for this drug that is lowering my chance of a recurrence.   I'm also grateful for the small experience I had with depression that gave me a better understanding of the disease, but am immensely grateful I am not experiencing that dark side effect of this drug. 

Wheelchairs and Fresh Air

Doug's birthday cake

After the first surgery my little nursemaids were really pushing the pain meds on me.  To be fair, I talk a lot and it was probably the easiest way to keep my quiet while we watched movies and previously recorded TV shows.  So, for about three or four days I just sat on the couch, half in, half out of it.  On day three Dr. President came to visit and I asked him if I could quit the pain meds.  "Of course," he said somewhat surprised by me asking.  You see I didn't realize I didn't have to take them.  I could have been off them the first day home and on to ibuprofen but when Doug and the nursemaids (and I) read the bottle -Take every four hours- we thought it was a mandate not a suggestion.  That shows you how little we know about pain medication!  Anyhow, after I stopped the pain medication I felt like a whole new person!  On day four I was up and about. I started baking like it was Christmas. I made bread, cakes, cookies, custards.  I just couldn't stop myself.  Doug's birthday rolled around and I made him a giant Boston Cream Pie.  I sent pictures of it to my brothers because growing up this cake was always their favorite. I organized cabinets and drawers.  I read my scriptures and other good books. Friends dropped by often.  I watched the Food Network.  (Okay. I watched A LOT of  Food Network.) I called old friends and had lunch with others. I worked tirelessly on a now close to four hundred page family history/cookbook. I ate Cafe Rio with Dee. I went to church every week that I was able. I went to the temple. I made our family Christmas card and did crafts. Millie and Bret came to visit. We went out for sushi. Millie and I got our nails done.  Nothing extravagant, but these little things brought me so much joy.

My kids sending love from Salt Lake

I realized something during this time.  I love my little life.  I mean I have always known that I have a great life, but again, a cancer diagnosis makes you really reflect. Simple things, I discovered, bring me a lot of happiness. I am so grateful for this.   Being in my home, cooking, cleaning, organizing, doing projects,talking with friends,  reading and writing all bring me immense joy.  On top of the things I love to do, I have the greatest little brood.  I mean really, who gets as lucky as Doug and I did when they blend families?  Our kids are happy.  They are productive and are living good honest lives that we hoped they would live.  While I have been sick they look for opportunities to get together and then knowing it will make me happy, they send me photos of their gatherings.  We also have extended family members that care and are engaged in our lives. We have friends, wonderful friends, that are more like family.  I have girlfriends that are my surrogate sisters, making up for the biological sisters I never had. We have a ward that is closely bonded, having raised up our kids together, and a new stake full of old and new friends who love the Lord as we do.   I have a job I love and friends at work that are kind and good.  We have a neighborhood filled with friends who look out for each other and I even have my brother's family living right across the street.  So although that surgery was tough,  in the weeks that followed I definitely considered that I might be the luckiest girl alive!

The skin graft donor site.  OUCH!

Surgery two came and this time, healing took a bit longer.  I think my body was like, "Whoa, whoa, whoa! Hang on a minute.  I'm not quite done healing from number one and now this?"  The second surgery involved a bit more pain.  Not the mastectomy, really, it was the skin graft.  Skin grafts hurt folks.  Years ago when our friend's daughter was almost killed in a head on collision I got my first look at skin grafts.  This tough as nails little gal endured many of them during her months in the hospital. Her little body had been devastated with broken bones, injured organs and many other wounds some of which required grafts. So when Dr. President first told me I would need a graft, I remembered those Wednesdays that I would sit by her bed in the hospital reading her books to pass the time.  I remembered the sound of her wound vac and the excruciating pain she felt each time she moved if her donor site was disturbed.  Dr. President told me it was going to hurt.  He said it would feel like I fell of my bike and skinned my knee really bad..  He was right it felt like I fell of my bike, several times... landing on the same spot...over and over again. That first week I struggled to move around, I had a hard time getting comfortable on the big couch so watching the Food network and reading were a little bit more difficult for me.  The wound vac pumping making it's annoying noises on one side of me and a drain sewn into my chest on the other side kept me pretty sedentary.  Like and angel, Doug emptied that disgusting drain each morning and night measuring what was there to report to Dr. President.  My nursemaids were back taking care of me each day and yet still, I felt lousy.  Those first few days were hard. Being unable to enjoy the simple things that make me happy was very difficult.  I  made an effort to reflect  more on  all that I have been blessed with in my life.  Isn't it curious that we sometimes need a dire event to help us appreciate the  lives that we are blessed to live? Sitting on my bed one night I poured my heart out in prayer to my Father in Heaven thanking Him for all I have been given and begging His forgiveness for the times I have been less than grateful for my many blessings.   Years ago my sweet friend Gloria  shared with me about a night during which she could not sleep.  At the time she and her husband were caring for some of their grandchildren and life was hectic and unpredictable for them.  She told me that during this sleepless night she knelt and prayed, but instead of asking Father in Heaven for his help she thanked him for all the blessings in her life.  She prayed all night long and as the familiar hymn suggests, "...counting her blessings naming them one by one."  I got out of bed, adjusting my tubes and vacs, and knelt.  I tried to do the same as Gloria had done and realized I would need weeks, no months to name all the things with which I have been blessed. I could take an entire twenty four hour period and barely scratch the surface of all that Doug does to bless my life.  I prayed most of the night crawling back into bed not because I had run out of things to be grateful for, but because I was falling asleep.
I found a talk given by President Monson in the October 2010 conference.  In it he recounts the story of a Canadian boy named Gordon who learned much about gratitude..

Gordon tells how he grew up on a farm in Canada, where he and his siblings had to hurry home from school while the other children played ball and went swimming. Their father, however, had the capacity to help them understand that their work amounted to something. This was especially true after harvesttime when the family celebrated Thanksgiving, for on that day their father gave them a great gift. He took an inventory of everything they had.On Thanksgiving morning he would take them to the cellar with its barrels of apples, bins of beets, carrots packed in sand, and mountains of sacked potatoes as well as peas, corn, string beans, jellies, strawberries, and other preserves which filled their shelves. He had the children count everything carefully. Then they went out to the barn and figured how many tons of hay there were and how many bushels of grain in the granary. They counted the cows, pigs, chickens, turkeys, and geese. Their father said he wanted to see how they stood, but they knew he really wanted them to realize on that feast day how richly God had blessed them and had smiled upon all their hours of work. Finally, when they sat down to the feast their mother had prepared, the blessings were something they felt.Gordon indicated, however, that the Thanksgiving he remembered most thankfully was the year they seemed to have nothing for which to be grateful.The year started off well: they had leftover hay, lots of seed, four litters of pigs, and their father had a little money set aside so that someday he could afford to buy a hay loader—a wonderful machine most farmers just dreamed of owning. It was also the year that electricity came to their town—although not to them because they couldn’t afford it.One night when Gordon’s mother was doing her big wash, his father stepped in and took his turn over the washboard and asked his wife to rest and do her knitting. He said, “You spend more time doing the wash than sleeping. Do you think we should break down and get electricity?” Although elated at the prospect, she shed a tear or two as she thought of the hay loader that wouldn’t be bought.So the electrical line went up their lane that year. Although it was nothing fancy, they acquired a washing machine that worked all day by itself and brilliant lightbulbs that dangled from each ceiling. There were no more lamps to fill with oil, no more wicks to cut, no more sooty chimneys to wash. The lamps went quietly off to the attic.The coming of electricity to their farm was almost the last good thing that happened to them that year. Just as their crops were starting to come through the ground, the rains started. When the water finally receded, there wasn’t a plant left anywhere. They planted again, but more rains beat the crops into the earth. Their potatoes rotted in the mud. They sold a couple of cows and all the pigs and other livestock they had intended to keep, getting very low prices for them because everybody else had to do the same thing. All they harvested that year was a patch of turnips which had somehow weathered the storms.Then it was Thanksgiving again. Their mother said, “Maybe we’d better forget it this year. We haven’t even got a goose left.”On Thanksgiving morning, however, Gordon’s father showed up with a jackrabbit and asked his wife to cook it. Grudgingly she started the job, indicating it would take a long time to cook that tough old thing. When it was finally on the table with some of the turnips that had survived, the children refused to eat. Gordon’s mother cried, and then his father did a strange thing. He went up to the attic, got an oil lamp, took it back to the table, and lighted it. He told the children to turn out the electric lights. When there was only the lamp again, they could hardly believe that it had been that dark before. They wondered how they had ever seen anything without the bright lights made possible by electricity.The food was blessed, and everyone ate. When dinner was over, they all sat quietly. Wrote Gordon:“In the humble dimness of the old lamp we were beginning to see clearly again. …“It was a lovely meal. The jack rabbit tasted like turkey and the turnips were the mildest we could recall. …“… Our home …, for all its want, was so rich to us.”

A few days after surgery two Dee showed up at the house.  Well, wait, let me clarify. Dee came over every day, but on this day she said, Let's go for a walk.  When I think of all of the simple blessings in my life I count nightly walks with Dee as one of the choicest.  We have been doing laps together in our little neighborhood  for so long.  Our girls used to accompany us on these long walks.  Now all but Emilee, her youngest have grown and gone. When the girls come home to visit they join us as we amble around the neighborhood, meeting up at Narnia (our designated lamp post). Sometimes Todd and Doug join us, but mostly it's a girl thing.  Basically we solve all the world's problems and unravel the secrets of the universe.  For instance, did you know if you drink cold water you will get cold?(Only the Moody girls and the Mecham girls are laughing at that inside joke, I know.  Sorry, I couldn't resist) Anyhow, on this day, I was thinking how I would love to walk with her but figured with all my tubes and drains I would have to walk at a snail's pace. Not so.  Dee had dug an old wheelchair out of her attic and cleaned it up, fashioning straps for my feet where the foot rests were missing.
Since I was already grateful for Dee and her friendship  I added old wheelchairs and fresh air to the growing list of things for which I am grateful.

Wheelchairs and Fresh Air

The Ugly Truth

Like I mentioned in an earlier  post, I am a strange type of hypochondriac. I can be all consumed by my illnesses yet I avoid medical attention at all costs.  I just want things to go away on their own and, for all of my life up until now, it's worked out pretty well.
The biopsy of the left breast was scheduled for the last Monday of summer vacation. By that time, the giant lump had grown to the point where I felt sure it was going to grow right out of my body. The wonderful technician and doctor worked quickly. I mentioned before it was an easy job for the doctor. It wasn't like he would miss the lump with his little flesh chomping gun, it was literally as big as my fist. Three very loud clicks later he was done.  Again the words, encapsulated and well defined were used in describing the now orange sized lump.  Doug was in Provo at BYU moving Bret into his first college apartment so after the biopsy I came home to an empty house.  I was told no lifting for twentyfour hours and to take it easy all day. I did the best I could.  It isn't in my nature to sit around so I worked on painting a coffee table and end table for the remainder of the morning.  School started in just two days so I had about 5,000 things I wanted to  get done.   A classroom to set up, lesson plans to attend to and a host of new programs and technology that I needed to digest.   That afternoon I went down to the school and promised myself I would just do work at my desk. I remember walking down the hall with my arms folded discreetly over my chest so I could hold on to the massive lump to stop the pain.   My thoughts were occupied as I reflected on the many things I had to do during the next three or four weeks.  I had the new school year of course and on top of my young students' classes I was slated to start teaching a graduate literacy course the following week. I was also enlisted to present at our stake's women's conference the second Saturday of the month. On top of that I had a Primary Teacher Appreciation coming up  and 11 year old scout camp was just around the corner.  Although my nest is empty September looked to be jam packed with commitments.  Planning for the weeks ahead kept me from focusing all my energy on the lump.  Besides, I had convinced myself,  It was a fibroadenoma, or possibly this other phyllodes thing (that are almost always benign by the way) so it was all good.
When the call came on Thursday and I was told I had, whisper it, cancer, a funny thing happened.  I knew instinctively that no good would come from my google searches at this point.  Somehow the reality of the diagnosis told me it was time for me to focus on the guidance and advice of the professionals.  You would think a hypochondriac like me would have sat at my monitor all night googling those forbidding words; malignant, spindle-celled neoplasm, but I didn't.  I knew I was out of my league so I just avoided the web searches.  I had read everything I could find about phyllodes tumors prior to the diagnosis and hoped with all I could hope that this thing, this interloper, this intruder, this aggressive, whisper it, cancer, would turn out to be one of those rare phyllodes tumors and not some far worse form of the dread disease.
About six weeks after D day I decided to dip my toes in the pool so to speak. I went online and deliberately searched for breast cancer. You can imagine the thousands of results that search returned. I looked over a few of the sites, hopping back and forth between  breastcancer.org, dana-farber.org and mayoclinic.org. I settled in on dana-farber.org.  I'm a Boston girl and somehow knowing the Dana Farber Cancer Institute is in Beantown  gave me comfort.  Besides my old high school pal Anne who is just finishing up her treatments for breast cancer was cared for at the DFCI and had nothing but wonderful things to say about the hospital.   She was diagnosed in 2015 and went through a mastectomy, chemo, radiation and most recently, reconstruction.  I haven't seen Anne in over 20 years, maybe close to 30.  I still picture her as a seventeen year old girl, not a woman, who like me is battling with this horrible disease.  Anne has been a huge source of strength and information for me.  She is, for lack of a better term, ahead of me, in all of this.  So talking with her about what I should expect has been informative, helpful,and extremely hopeful .
So what did I find in my research?  Cancer is gross.  Cancer is a cruel, ugly diseases that picks on the old and young alike.  Breast cancer it seems finds a place for itself in one out of eight women in the United States.  Welcome to the club to which nobody wants membership. I still avoided looking at survival rates or stats on recurrences.  I'm just not there yet and quite frankly don't think I will ever get there.  Knowing that information won't help me in any way. In fact, I steered clear of anything that felt negative to me. I studied my pathology reports and with the help of the breastcancer.org's guide made sense of every foreign term I found there.  I researched Tamoxifen, the drug I would be taking for the next five years.  I learned about its effectiveness and its side effects.  I researched radiation, and its effects on the body as well as  different courses of chemotherapy.  Although I have been told chemo is unlikely, it's still a possibility so I wanted to know more about it.  I looked into support groups (Vegas is significantly  lacking) and found some online communities which offered lots of information.  I further studied nutritional changes I wanted to make and other lifestyle changes that could help me as I go forward.
As I educated myself I felt myself becoming stronger, more powerful. Faith in the blessings I had received increased with this added knowledge.  Since the surgeries which removed the damaging tumors I have not known what to say about myself in regards to my cancer status.  Am I cancer free?  Am I a cancer patient?  Am I already a survivor? I mean  the cancer is gone, right? Dr. President made darn sure of that. But somehow saying , "Oh ya, remember those three weeks or so when I had cancer," doesn't seem logical, or even possible.  Dr. President warned me that for months, maybe years, heck possibly forever, I would think every little ailment was cancer.  Considering my place in the Hypochondriac's Hall of Fame I was pretty sure he was right. Still, armed with this knowledge (in addition to my faith), I have been able to fight victoriously in what is probably the most difficult battle when it comes to a cancer diagnosis.  The battle with fear.  I once heard faith and fear can't exist together.  I'm not entirely sure that is true.  Throughout my illness I have had tremendous faith-faith in God, faith in His plan, faith in the Atonement of Christ, faith in prayer and faith in many other principles, but I have still felt fear on many occasions.  We often talk about our relationship with the Father and Jesus Christ and use phrases like, "We do our part and Christ makes up the rest."  I think maybe the formula to overcome fear is knowledge plus faith.  We do our part, which is to gain  knowledge and add that to the faith we have.  This in turn causes that  very faith to grow.  For me, this combination has been unbeatable.

Shark BItes

The phyllodes tumor was really big.  Eight centimeters by the time they removed it.  Because it was so big and I was so small (in the mammary department anyhow) Dr. President felt sure he would not be able to close me up after removing the mass.  Not only that he was pretty sure in order to remove the tumor and ensure clean margins he would also have to remove part of my left pectoral muscle. He told me he would be using a surgical material called Integra to serve as a temporary skin of sorts until a skin graft from my leg could be performed during a later surgery. Integra is made of shark cartilage. (From the time we heard that forward we have referred to the scar left behind as the shark bite.)   When he told me all of this in his office on August 26 I was not so much concerned with these particulars regarding the surgery as I was about the malignant, spindle-celled neoplasm  that was growing rapidly in my chest.  

It’s heartbreaking to me how much emphasis is placed on the physical nature of  a woman’s body.  When I was young, like so many girls,  I really struggled with body image.  I compared myself to the shapely women in magazines and movies and always came up short.  I remember in junior high when many girls started to develop and I stayed miserably flat chested,  I asked my mom about it.  “When will my boobs grow?”  My mom was a little pear shaped elf.  “Five foot one and three quarters,” she would proudly rattle off when asked her height.  She had plenty of fluff in her bottom, hips and thighs but was small like a child through her shoulders and chest. She laughed and  said, “Oh honey, I’m still waiting for my chest to fill out.”  Fast forward to me as an adult.  At 48 I too was still waiting for my chest to fill out.  Like my mom, I’m small and  carry all my extra pounds in my behind, hips and thighs.  I would like to tell you I loved my body prior to the surgery, but I didn’t.  I beat myself up every day like so many woman.. I am not terribly unfit. In fact I go on workout binges every year.  I go to the gym pretty much every day of summer break but when  the school year takes shape, I find myself to be more and more busy, less and less motivated and make fewer and fewer trips there.  Still I’m not a sedentary person. I walk a lot, am not afraid of hard work and basically just have a lot of energy so I'm constantly moving. When I was in my thirties I contemplated getting breast augmentation.  I wasn’t too serious about it. It was expensive and as much as I wanted a bigger bust one day, I enjoyed the how thin my small chest and tiny torso made me look the next.  I bought hundreds of bras that afforded me enhanced bust lines.  I had padded bras,  push up bras, gel bras, water bras.  You name it, I had it.  Inevitably, I would wear these, “big boob bras” as Doug called them, for a week, maybe two and revert back to my regular Maidenform T Shirt bra. I know lots of women who’ve had breast augmentation. Some are happy they did it, some are not.  It seems to me those that were content in their life to begin with remained happy after surgery and those who thought a giant set of boobs was going to somehow make them a new person ended up sorely disappointed.

After that first surgery I woke up with my left breast covered in gauze and tape.  Dr. President was the first to change that dressing while Doug and possibly Kristie and Dee looked on.  For the next few days Doug, Kristie, Dee and Gloria Patterson would be my personal home health care team.  The wound needed to be packed twice a day and kept moist with a chlorine solution.  They would also encourage me to do my “exercises.”   Dr. President told me that I should raise my left arm into the air as often as I could.  He said I should enlist a door frame or a wall to be sure my arm was being raised straight above my head so that once healed I would have full range of motion. You guys, it hurt.  It was hard. I felt like I was pulling against a giant rubber band that had little or no give. Who would have ever thought lifting your arm, raising your hand so to speak, could be so difficult.  I spent a lot of time those first few days, fingers creeping up the door jamb in my bathroom, thinking how so very often we take our bodies for granted. On that Sunday morning, the day after surgery, when Dr. President changed the dressing.  I took a quick peek when he removed the bandages.  There, in the spot where my breast should have been was a sort of hole in my body, football shaped, red and moist. I quickly looked away and would not permit myself to cry.   I was alive.  How dare I be so vain.  I was done nursing, I would never have more children.    “This was so unimportant,” I told myself.  Still I felt like a freak.  In the weeks and months that followed a friend made mention to me that, “I was lucky because I had a small chest to begin with so it wasn’t as noticeable.” This  well meaning friend didn't mean to insinuate that the loss of a small breast is less painful or less emotionally difficult  than losing a large breast.  I’m absolutely certain it was not her intention, but I find it remarkable that even the best of us, in some small way buy into society’s emphasis on appearance; that my "luck" was somehow connected to my how I would look.

In the days that followed that first glance downward I avoided looking at my chest completely.  When Doug or any of my angels packed and bandaged my wound I deliberately turned my head so I wouldn’t even see the littlest bit of the shark bite.   Doug was wonderful throughout this time.  Each day he tenderly packed the wound and did his best to talk about how good things looked. “It’s healing really well,” he would remark as he taped me up.  Let’s be honest, there was certainly an element of loss for him but if it bothered him, he never let it show. Instead he remained cheerful and optimistic at every pass. After a few weeks I went into our room alone and removed all the bandages. Before I turned to face the mirror I bowed my head and said a little prayer.  “Please, help me to be strong.”  I turned to face the  mirror and looked at what was left of me. I cried briefly as I stared at the healing wound. Recently I read an address given by Stephanie Nielson who, as a young mom, survived a plane crash that left more than 80% of her body burned.  In it she said,  “I had been taught--and thoroughly believed in--my infinite worth as a daughter of God. I knew my value as a person transcended my looks, but that belief was being tested as I looked at my disfigured reflection in the mirror.”  I also believe in our eternal worth but like Stephanie at that moment it was hard for me to see past what was in front of me.  As I stood there wiping a few tears from my cheeks I had a powerful thought that chased away my self pity.  I thought,  “Here I am. “Here I am, living.”

In her address Stephanie talks about a meeting she had with Elder Holland.  He told her, "We look for Christ's scars because they are evidence of what He did for us. They'll be the first things He shows us when we see Him again. Your scars tell a story too. They might not make you feel attractive, but they are a witness of a miracle: that God blessed you to live and that you have accomplished very difficult things." 

 I guess that is what I can always remember.  God has abundantly blessed me in this time of sorrow.  These scars I have, while not attractive, do tell a story.  They tell my story.  The one to which I agreed.The one I understood before coming to this earth. The story that keeps producing more and more tiny miracles each and every day. 

He Who Must Not Be Named

“Cancer,”  the solemn answer so often whispered when asked about a person’s devastating illness or untimely passing.

When you say the word cancer, do you kind of whisper it? I do.  I wish I could remember the movie in which the characters talk about this. How it’s too scary to say out loud.  I’m guessing it isn’t just me and the characters in that film who feel this way.  
In the first Harry Potter book we learn along with Harry about He Who Must Not be Named.   I suppose like the characters in the series we fear that if we say it aloud we will somehow be invoking doom upon ourselves.  In the first book Dumbledore encourages Harry to use Voldermort's name. "Call him Voldermort Harry... Fear of a name increases fear of the thing itself."   Maybe it's like that with cancer. 

When I was a kid, we never went to the doctor.  Basically at my house if you were seeing a doctor your were either in the ER with a fishhook in your eyelid or you were being admitted to the hospital for an emergency appendectomy, so I'm not really sure how I became so medically motivated.  Let me explain. I'm pretty much the biggest hypochondriac you have ever met. I've never been a run to doctor kind of hypochondriac, instead I am a Web MD kind of hypochondriac.  Prior to the web, I would actually go to the library and look up my symptoms in giant volumes of medical conditions. I'm not kidding.  I would stand there between the stacks sure my liver was about to quit  or I was about to experience a stroke.  I have completely convinced myself on numerous occasions that death was close at hand. Liver cancer has always been one of my biggest fears and the threat of pancreatic cancer has gripped me. Brain aneurysms also make my list of likely ailments and one of my most far out fears is death by poisoning.  When I was a junior high aged kid some jerk in Chicago put poison in Tylenol bottles -  cyanide I believe.  I have never gotten over that.  I struggle, really struggle, with taking the first capsule out of a bottle. For many years my twitching eye and tingling hands had me convinced I was developing MS. I know it may sound like I am being facetious, but I swear I have spent hours agonizing over real and imagined symptoms. I always stop short of seeing a doctor though.  Not because I think my symptoms aren't real, but because I am too afraid to say it aloud.  I'm too afraid to have a doctor confirm my suspicions.  I'm too afraid to know the truth. "What if I am dying?"  I would rather not know. Still, I drive myself and those closest too me crazy as I fret and fixate on these conditions. Over time my symptoms will subside and for a while I will be free of  fear. Sadly, thoughts and new symptoms  will creep in and consume me and I will be back online. Have you ever seen that meme that says, "A worried mother does better research than the FBI." I completely agree with that one by the way, and along those same lines I would say, "A hypochondriac does more thorough research than a medical fellow." That's why when the lump in my left breast first formed and then began to grow quickly I googled extensively.  I was sure I had a fluid filled cyst in my breast.  In my initial research I found caffeine consumption was  thought to contribute to the  development of such cysts.  This gal ran on diet coke for about 15 years so of course that's what is was. Since it is something that has to be taken care of, and won't just go away, I actually went to the doctor.  My doctor's nurse practitioner thought I might be right and I left that first appointment thinking I was in the clear.  This little cyst will be taken care of in no time.  She sent me to have an ultrasound to confirm our findings.  I made the appointment for about a week later.  That lump was growing so fast.  I swear it had doubled in size by the time I got  the ultrasound, but it was a cyst and I was still drinking diet coke so... After the ultrasound I returned to my doctor's office and saw the nurse again. About another week had passed and that old lump had continued to grow. "It's not a cyst, it's a mass.  You need a diagnostic mammogram." Words like well defined and encapsulated entered the dialogue.  I made mental note of these words for my google research that night.  I called Steinberg to schedule the appointment and their first available slot was mid September- a lifetime away. I grumbled about  our crummy new insurance plan and the close to a month wait  but set the appointment.  Armed with new information I sat down to google.  Using my new arsenal of terms I quickly diagnosed myself with a fibroadenoma.  For the next day or so I was content with my research but the lump seemed to be getting bigger each hour.  There was no way I could wait a few weeks to have that mammogram. I called my doctor's office to ask if there was any way they could expedite the process.  They told me my insurance wouldn't approve a stat order so I would have to wait.  I called my pal Carol.  She is my darling friend who works at West Valley Imaging. Before a massive overhaul to our health plan we were able to have diagnostic tests done at their location.  I asked her how much it would be to do a test there with her. It wasn't cheap but both Doug and I agreed waiting was not an option.  I really felt like I needed some answers.  Carol worked her magic and I was able to see her the next business day at 8:00 AM.  I spent the entire night on the computer.  My google searches had gotten more specific.  I added rapidly growing, painful and disfiguring to the my previous searches.  The night before I went to see Carol I had my first encounter with the phyllodes right there in my kitchen. I showed Doug what I had found and announced, "This is what I have."
The next day after the usual hugs and chatter, I stood shirtless in Carol's relaxing exam room.  I told her about all of my research and asked her if she knew anything about phyllodes tumors.  She said she knew very little about them. I wasn't surprised.  My research told me they were very rare. When the exam was done Carol sent me on my way. She is always encouraging and hopeful.  She too used the terms, encapsulated and well defined  but I could see a little look of concern on her face that day as she told me I would need a biopsy to get any conclusive results. "I'll be praying for you," she said as I left her that day.   This just got real.  
Driving home that day I allowed myself to think the thought I knew would consume my hypochondriac self from this point forward, "Do I have cancer?"