Friday, December 14, 2007
Can't Believe It!
I am not sure what radiation will bring, but I am looking forward to photographing and blogging each step of the process. In the meantime check out the continued cuteness at The Daily Jacob...
Saturday, November 10, 2007
Keep On Keeping On
Over the past few weeks lots has happened, and it is all good news. I broke a record by making it to work everyday for two weeks in a row! If you know me, you know it is awesome for me to be back at work. Working on a regular schedule makes me feel like a normal person. My students are keeping me busy and so is IEP (Individual Education Plan) season. IEPs are the extra paperwork that go along with being a special education teacher. They are extremely time consuming, and most of them are due at around the same time... now! :(
I have completed the second round of scans - MRI, CT, X-Ray, and MUGA. Everything came out with good results. No change to my heart, no more growth or new metastasis of cancer, and the edema around the lesion in my hip has decreased. I have completed 5 of 6 chemotherapy treatments, my last treatment is in two weeks. Then I will wait three weeks to heal before radiation begins.
Scott has also had some recent news. He began a new job on Monday, and we are thrilled that he working locally again! It makes feel good to know that he is right down the street if I need him.
The most EXCITING news by far is that Beth gave birth to our nephew! Jacob August Beaton was born on November 13, 2007. Check out all of the adorableness here.
Friday, November 2, 2007
Scans Round 2
Scans Round 2 |
Thursday, October 18, 2007
Thank You
As Scott and I get ready for the benefit this weekend I am becoming extremely nervous and full of angst. I just know I will be a crying mess. Not because I am sad, but because I am so thankful for the support and encouragement with which I am surrounded. I simply do not know how to react. The thought of people rallying together in my honor is just simply overwhelming...I mean it is not like I did anything to deserve all the support other than wake up one day with cancer.
I think that part of my struggle is that the benefit is making me jump with both feet into reality. I know it sounds silly that I do not want to look or feel like a cancer patient, but I don't. This benefit and the outpouring of support from the community and family and friends makes me admit to myself and face the fact that I have a potentially fatal disease. I think I am happier with little bit of denial on my side. For me, agreeing to this benefit in the first place was not about money or support or getting the word out. It was and is about friendship and learning how to let other people help. So I continue to struggle with admitting to myself that I am sick, but I am going to try to work on the thank you part.
Thank you for the cards, food, well-wishes, thoughts, laughs, tears, hats, gifts and support. I wouldn't be able to get through this without you...my family, friends, neighbors, friends of friends and colleagues. I am humbled by all that you have done for me and my family. From the bottom of my heart please know how grateful I am.
Sunday, October 14, 2007
Chemotherapy Treatment #3
I guess my new normal is tired. The best way to explain it is, I always have heavy arms and legs like I just got out of a hot tub. I go to work, come home, eat and sleep. I have energy for little else.
Tuesday, October 9, 2007
A Teacher Never Knows Where Her Influence Will End
On Monday when I returned to school, I presented my biweekly cancer update which always includes a slide show. I usually show my students the pictures that I put on my blog, and explain the past weeks happenings. After missing an entire week of school, it seemed appropriate to give my students an update and share my NYC pictures with them.
After I was done explaining the events of the past week, one of my students asked if he could show me something on the internet. I asked if it was going to offend me or anyone else in the class. He explained that he wanted to show me a song. I asked if the lyrics are appropriate...again, I had to be sure. He played this. Needless to say, it took everything in me to keep my composure. I was and still am completely shocked.
I am glad my students are along for the ride with me. I may be the luckiest cancer patient ever to have 75 young adults holding my hand on this journey. After 11 years of teaching you would think that I would learn to expect the unexpected.
I think Henry Adams was correct when he said, "A teacher affects eternity; she never knows where her influence will end."
Saturday, October 6, 2007
Welcome to Holland
WELCOME TO HOLLAND
by
Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
A Familiar Place
Through my cancer journey thus far I have needed to do self-checks to make sure I am not hiding from my fears, my life, myself. I need to ensure that I am okay and truly dealing with each new day, minute, and moment. I have lost the ability to determine what is "normal"... I am quickly learning that there is no such thing as "typical" when it comes to cancer.
With that said, I have learned that my reason for being in bed can easily be justified by taking a look at my complete blood count (CBC). I am not depressed. My hemoglobin is low which makes me feel tired.
On Friday I learned that my liver enzymes remain high (they were elevated when I was in NYC), which can be a result of a number of things: They may be elevated as a result of chemo (after all, they are dumping toxins into my body every week), or my they may be elevated as a result of my mystery illness last weekend, and they are just taking their sweet old time coming down. Worst case scenario, there may be something wrong with my liver. More tests will soon determine the answer.
And so I find myself in a familiar place, one that I know, but don't necessarily like. It is a place of angst, despair, hope, and fear. I find myself waiting and wondering what is to come.
Thursday, October 4, 2007
For the Cause
Max did a Pampered Chef show for a couple right after she was diagnosed. I remember exactly what she said when she got home. It was, "They would so be friends of ours". I have since met the Pritchards and, as always, she is right.
As we have found, friends and family, near and far, all ask what they can do to help. Well, Lisa and Dave, along with Jen Bouch, decided they were going to put on a benefit Poker Run. Max and I have participated in events like this in the past.
This is where it gets tough for us. We certainly don't see ourselves as a charity or the necessary beneficiary of a fund raiser. Maybe I'm delusional, but if anything I think that we try to be generous and helpful to others when possible. However, the events of this past weekend, coupled with an eye-opening conversation at the hospital, has made me realize I have yet to fully grasp what our needs truly are, and what they may be in the future. Additionally, the realization that this is not a sprint but a marathon. So, we are humbled by their generosity and effort.
Yesterday, Lisa expressed concern that word get out to the readers of Max's blog, so with mixed emotions, I relay the message. Please understand our intention is the message of the event be about Breast Cancer Awareness and there will be appropriate literature and conversation as such. Also, Max and I will certainly be donating a portion of the proceeds to the facilities which have provided us information, counseling, and comfort in this difficult time.
If you're going blind like me, click to make it big.
Wednesday, October 3, 2007
A Surreal Experience
The weekend started out fine, on Friday, 9/21/07, I went to work as usual and then immediately went to the hospital for my weekly Herceptin treatment. This treatment takes 1/2 an hour and has no side effects. I also began a drug called Zometa which is for bone strength. This treatment took about 15 minutes. I was feeling great. My Oncologist cleared me for travel and let me know she was on-call this weekend which made both of us more comfortable with the idea of me traveling.
Next it was off to the airport to leave for NYC. My plane was delayed so Scott and I went for a quick bite to eat, and then he dropped me off at the airport. I waited about 2 hours to board the flight, as there was air traffic control problems in NYC, and we kept getting delayed. I eventually made it to New York and took a cab to sister's place where I was promptly greeted by my brother-in-law. It was wonderful to visit with them for a while and get a tour of the new apartment...which by the way, is FABULOUS.
Around 2:00am I was awakened by the feeling of being so cold in bed I thought I was losing my mind. I began to violently shiver and could not bring myself to get out of bed for another blanket. I was so cold, it was almost paralyzing. After a couple hours of shivering, I finally fell back to sleep. I woke again at 5:00am and took my temperature which was 102.4! Knowing that 100.4 is the "magic number" that sends me to the hospital for broad-spectrum antibiotics, I was absolutely horrified. So what did I do? PANIC (which usually isn't like me)! I called my husband and then my oncologist. My doctor told me to take two Tylenol, which I did. I dealt with chills and sweats for a few hours, but when the Tylenol wore off, my temperature shot right back to 102.0, and I began vomiting. My oncologist told me to go to an urgent care for blood pressure, to find out what my oxygen levels were, and for a complete blood count (CBC). Here is the thing-Manhattan does not have urgent care. Only emergency rooms. So two hours before my sister's shower was to begin I was being lugged off to the ER.
It ends up I was admitted to the hospital because my pulse was very high, and after three bags of saline (and multiple trips to the bathroom) my pulse was not dropping. I spent 10 hours on the most uncomfortable gurney ever. The hospital which is multiple city blocks long, did not have any available beds, so I stayed in the observation unit.
It turns out that I had a rash the week prior (which was not shingles), for which I was being treated, and a combination of whatever was causing that infection along with Zometa, I spiked a high fever. So my ER experience was just a combination of bizarre things that were out of my control.
I ended up missing the baby shower, dinner, and the play I was supposed to see. However I did get to spend great quality time with Beth and Josh. They REFUSED to leave my side, and stayed with me throughout the night in shifts. I am not sure what they thought was going to happen to me in the hospital, but I was glad for the company.
On Sunday, I was supposed to return on a 3:30 flight. My knight in shining armor, Scott jumped on a 6:30am flight to come collect me up and bring me back to Ohio. Unfortunately at 3:30 when we were supposed to leave, I was still in the hospital. My electrolytes and various blood work numbers were still falling rather than stabilizing, so they wouldn't release me. Besides, I did not want to be responsible for an emergency medical landing, so I did as I was told and stayed put. Scott and I left on the last flight out of NYC on Sunday night.
In reflection, here are some thoughts to consider as a result of this surreal experience:
1. Never try a new IV treatment and leave town the same day.
2. Sisters and brother-in-laws make amazing nursemaids.
3. Getting sick can make your husband show up anywhere, anytime.
4. If you ever get the opportunity, use a wheelchair in the airport. We zipped right through the security line, and were the first ones to board the plane - and one of the first ones to deplane.
5. Always keep a camera handy, you never know what is going to happen.
6. NYC is not half as exciting when you are visiting it from a hospital bed.
7. I do not recommend using public restrooms at the hospital unless it is absolutely necessary.
8. I love bacon!
Click on the picture below for all the pictures from the weekend.
NYC |
Sunday, September 16, 2007
Chemotherapy Treatment #2
Friday
Friday is always Oncologist day, and today it was chemo day. My sister was in town from New York, and we met my husband at the hospital for my appointment. Scott and I met with the oncologist first. This is the first time we have met with her since learning that the lesion in my hip is malignant. We asked all the tough questions and had really candid conversation with my doctor. After that it was off to my mini cubicle for chemo. As usual, they took a complete blood count to make sure I was good to go with chemo. Since everything looked good, we had the green light for treatment. Once I was hooked up, Scott left for work, and my mom showed up to spend time with her girls. Everything went as expected, except this time in the middle of one of the chemo bags, felt sick...just like the beginning feeling of being carsick. The nurse slowed down the drip on the bag, and the feeling subsided. I was at the oncologist for most of the day, but felt pretty good after treatment. I drove my sister back home, and we went to the bank and grocery store. Then we marinaded chicken for dinner Saturday night, and cooked dinner together.
Saturday
Saturday morning I woke up around 2:00am and felt nauseous. Took Zofran which is an anti nausea drug. Beth woke up too. We sat up from 2:00-5:00am. The smell of my house was making me absolutely ill. I thought it was the garlic from the marinade that I was smelling, but Scott and Beth swore that the house had no odor. It took about three days to realize that the horrible smell I was experiencing was just in my nose! During the night and most of the day I had a serious aversion to most food smells.
During the day, Beth went to Cleveland to see mom, and my dad and other sisters came to visit me in shifts. I also took a nap for a few hours. Beth returned for dinner, for which I had NO appetite. I couldn't deal with the smells of dinner, and the only thing I had a craving for was homemade macaroni and cheese. I made the Kraft kind for dinner and served Scott, Beth and Lindsey the chicken that we had marinated overnight. After dinner I felt well enough to bake a pan of cookies. It also took the chicken/garlic smell out of my house.
We went on a driving tour of Alliance, stopped at school to show Beth my classroom, and went out to breakfast. Then we dropped Beth off at the airport, stopped at Old Navy and then I planted myself on the couch for the remainder of the day.
Monday
Wendy ALWAYS makes everything better! :)
Thursday
Back to work today. Still hesitant with food. Very tired. After work I heated up leftovers for dinner and went straight to bed. Low grade fever of 99.5.
Friday
Went to work and immediately after Scott and I went to the oncologist for Herceptin. Went out to dinner after oncologist. My appetite is back. Energy...not so much. Low grade fever 99.5. Although 99.5 is not truly a fever, I have sweats like and chills like it is a higher fever. Wendy tells me that the magic number is 100.4. If my temperature reaches 100.4 I need to call the oncology office day or night... still have diarrhea.
Saturday and Sunday
Still have diarrhea and a low grade temp on and off. Tired. I keep asking Scott why I am so tired all the time. He keeps catching me closing my eyes while sitting up. The fatigue is frustrating.
So there is the week in review. Sounds like a blast, no?
Sunday, September 9, 2007
I'm Too Sexy For My Hair
I'm too sexy for my hair |
A Picture is Worth...
a thousand smiles.
This photo is an instant classic in our house. Let it be known that we have the best friends... ever... in the universe...bar none. This is the day after the aforementioned head shaving caper. I can't look at it without smiling and hoping that somehow I am as good a friend to them as they are to me.
I have known the guys in this photo for nearly my entire life.
Exhibit A. High School Graduation 1984
Exhibit B. Birth 1966
OK, I made up Exhibit B., but you get the idea. However, if I didn't make it up, let it be known that Beau would be the scrawny little guy on the left with no diaper and a bladder bag.... just sayin'.
Ask my Mom and Dad about any one of them and you'll get a story they probably never would want repeated. Of course, those that know us know this circle of friends is quite large and has been intact for a lengthy period of time. Suffice it to say that we are so very thankful for each and every one of you.
Oh, I guess I should explain the T's in the 1st pic.
Dictionary:
A day that coincides with the 1st Ohio State football game of the season, which shall include, but not be limited to: 18 holes of golf, a little gambling, the OSU opener, maybe some friendly betting, the big sandwich , probably a few wagers, poker, and possibly a few risk/reward scenarios.
aka a day for great friends to stay in touch.
Based on the Random House Unabridged Dictionary, © Random House, Inc. 2006.
Man Day |
So, Thank You! to each and everyone of you who have helped to provide intermittent and necessary distractions from the suckage that is cancer.
BFF (<-- a failed attempt to be current),
Scott
Wednesday, August 29, 2007
Update....
School started. I spent the the first day of class explaining to my classes that I have cancer, explaining that it is not contagious, and that I plan to be at school as often as possible. Of course I had to assure my students that I am NOT dying. Being as straightforward as they are, my students will just come out and say things like "are you going to die?" or "I don't know what to say..." Kids are just so blunt. I love it. I have students who actually ask what everyone else is thinking. I have had to assure my students, friends, family, and colleagues that I do not plan on dying for about 50 more years. When people reveal that they do not know what to say to me, I respond with I don't know what to say either. At this point there really isn't much to say because I actually feel FINE. It is weird. I have been anticipating this huge onset of feeling ill, and it just hasn't happened yet. I actually feel pretty great, and although that may not last long, I will take what I can get. I have made it through one treatment. I have 5 to go. At least I can say I made it through one without being sick...just tired.
Beyond school starting and breaking the news to my students many other things have happened. After my lumpectomy, I was sent to have a bazillion scans to make sure that my cancer had not metastasized to any other part of my body. I had cat scans and MRIs and a bone scan. Unfortunately my bone scan showed something in my right hip, so they did a regular x-ray, then an MRI. All of which came back inconclusive. So, it was off to an orthopedic oncologist up in Akron.
My bone specialist in Akron sent me for a cat scan guided biopsy of my hip. In case it is ever recommended that you have a bone biopsy...just say NO! I do NOT recommend it. There is something gross about hearing someone knocking a hole through your bone. The whole experience was gross, painful, and all around disturbing.
/
Do I look as nervous as I feel?
The nurse is showing the cat scan image of the area of bone in question to my husband and mother.
When I got the results of my bone biopsy I was not shocked. Right hip-malignant for breast cancer. Yes, breast cancer in my right femur. I guess metastatic breast cancer was not originally in my plan for the future, but it is what it is...and I will play the hand I have been dealt, so metastatic breast cancer it is. (Don't worry, I still plan to kick cancer's A**!)
The bone biopsy put me on crutches for two weeks. What a pain. Lugging my school stuff in and out of the building is frustrating, but other than that, it hasn't been so bad.
On a lighter note, I cannot express the magnitude of thanks I have for the well-wishes that have been sent my way. I have absolutely amazing family, friends, and co-workers. Everyone has been extremely understanding, helpful, and willing to help me in anyway they can. I am truly fortunate to be surrounded with such love, support and hope.
Here is an example of how far Scott and my friends will go for us. FIVE of our friends shaved there heads BALD for me as a gesture of their love and support. One of the five had hair so long it was in a pony tail...about 8 inches long. Also, one our friend's five year old son cut his hair (but did not shave it) in my honor. Here are the pictures (sorry they are grainy, they were taken with my cell phone!):
The boyz |
Saturday, August 25, 2007
2,000,000
I've been told there are approx two million women in the United States living with breast cancer. My wife is now one of them. Living with, smiling with, crying with, sleeping with, waking with, waiting with.
This number is increasing due to advances in treatment and early detection. So, until science can determine cause and cancer is eliminated completely, living with is good.
Of course, being bestowed this title brings a number of things, mainly uncertainty. Uncertainty that can tag every possible thought. So many of our expressions, spoken or not, begin with what, when, where, and why. The only known is who. And it is the who that is most important. Not just the who being my wife (although this is my most important), but the who being two million wives, sisters, daughters, girlfriends...
I have been amazed by the strength and camaraderie of the women I have met. Simply amazed. Each of their stories is unique and personal. They make perfect eye contact and share experiences that are challenging to say the least; medically accurate, individually acute. Not to scare or intimidate, but to let my wife know that she too can overcome. It is here that she will excel. Her drive and ability to educate and personalize her experience will soon help someone better understand what it means to be one in 2,000,000.
Friday, August 24, 2007
Treatment #1
So far so good, I have not been sick at all... however I am afraid this is the calm before the storm. Click on the picture below to see pix!
treatment 1 |
Wednesday, August 22, 2007
My Chin is UP!
port |
My treatment was canceled because my amazing oncology staff was able to work their magic and get me an appointment with an orthopedic oncologist in Akron...a specialist. It turns out I have some sort of bone lesion in my right hip. We do not know what kind of lesion it is....and it is best to rule out metastatic disease before treatment begins. The chemo treatment for metastatic cancer is completely different than what we had originally put in place.
On Tuesday I went to the specialist and guess what? Another biopsy is in my future...hooray! I look forward to getting in touch with my oncologist today to see when chemo will really start. I am not so worried about results either way. I will deal with whatever comes, however the anticipation is enough to drive a person mad!
Saturday, August 18, 2007
Pin Cushion
Thursday, August 16, 2007
It's just hair
Before
Saturday, August 11, 2007
Hair
My hair is longest it has been in years, and I am struggling to imagine what I will look with no hair. I plan to wear hats and scarves, however they are hard to find. Traditional hats from department stores have rough seams and are too big for my head. I ordered a couple of hats from the Just in Time just to try them out. I made a hair appointment for Wednesday morning. I plan on donating my hair to Locks of Love and cutting what is left super short. I think it will be less gross when I lose it, however I am struggling to prepare myself for the initial shock of chopping off my locks. What if I have an ugly shaped head? My hair hasn't been short...like boy short since I was in 7th grade!
Of course I am going to wait until AFTER I see the second oncologist to get my hair cut. Perhaps oncologist number 2 will have a different perspective on the hair loss thing. Either way, cancer still sucks.
Thursday, August 9, 2007
It is what it is
After much thought and deliberation, I'm at a loss to put into words what I'm feeling. Right now, I'm thankful for the support of family and friends... it is evident and meaningful. As for my personal feelings, well, we all know how transparent I am with my emotions. Maybe we'll leave that for another time. In the meantime, know this...we're focused and optimistic and we will get through this.
However, I did run across this.
As Ricky Bobby says, May you be blessed by eight pound, six ounce, newborn infant baby Jesus,
S.
Radioactive
In other words, I can set off the detectors at the airport. It seems like I should be glowing or something.
Tests, tests, and more tests!
I have had one heck of a week. So far I have had the following tests to make sure that my cancer has not spread:
CT Scan, MRI, and Bone Scan.
I also had Physical Therapy for my arm.
Next week I will see 2 Oncologists, my neurologist, my dentist. I will have a MUGA test (a test to make sure my heart can handle chemotherapy). Next week I also plan to donate my locks...
It still amazes me that I feel just fine but I still need all these tests!
Yesterday I stopped by The Gathering Place. I got some ideas of how to break the news to my students at school, and took out some books on scarf-tying and the like. I guess I am in the market for cool scarves and hats, as I will be losing all of my hair in the next few weeks. Hair from everywhere on my body, eyebrows, eyelashes, and everywhere else you can imagine. I think I may cover my head with temporary tattoos...just for giggles.
Friday, August 3, 2007
Oncology
Diagnosis:
Invasive Ductal Adenocarcinoma
stage IIb
Estrogen, progesterone, and Her2Neu positve
Treatment will include:
AC (Adriamycin/Cytotoxin) (4 rounds-2weeks each)
Taxol/Taxotere (12 rounds-1 week each)
Herceptin
Tamoxifen
Radiation
This looks TERRIFYING doesn't it? I don't feel sick... how could I need ALL THIS treatment?
Run!
Tuesday, July 24, 2007
Moving Forward
Since that day, everything has been a whirlwind. A biopsy of my left breast, lumpectomy and sentinel node biopsy...all during the same surgery. Recovery from surgery, and physical therapy.
Doctor Appointments Galore
One week later, on Wednesday, June 20 I returned to the doctors office for an ultrasound. To be honest I was focused more on my upcoming vacation than the mass in my breast. I had read somewhere that 80% of lumps found by women who perform breast self exams are nothing. Also, breast cancer does not run in my family. Both of my grandmothers had it post-menopause, in their 70's, which puts them in a different category. There is no way this was something serious, but I told my parents what was going on and invited my husband to my ultrasound appointment just in case.
Two hours later the head of mammography called me to tell me that the mass in my breast was solid and not a cyst. She asked if I would be available to meet with a surgeon. She had already made an appointment for the next day.
On June 21 I arrived at the surgeon's office with ultrasound films in hand. I wasn't really sure what to expect, and was trying to distract myself by thinking about vacation. After all, going to surgeon's office meant that some sort of needle or incision was in my not too distant future, and I was not looking forward to it!
Upon investigating my lump and viewing my ultrasound films, my surgeon looked at me squarely and said, "I can't rule out cancer." He explained that I needed an ultrasound guided core biopsy, and set me up with an appointment at the Breast Care Clinic at the hospital for the next morning.
Monday, July 23, 2007
Shocking Discovery
"I have a lump in my breast." When I heard myself say the words I began to cry. It just felt scary to say…not because I dreamed it could be anything as scary as cancer, but because I knew it would require something scary like surgery to have it removed. Cancer did not feel like a real threat, although it briefly crossed my mind.