Thank You

All my life I have had a giving nature. I find extreme satisfaction in helping others...always have. Perhaps that is why I struggle so much with asking for help and taking the help that is offered. It is just new stomping ground for me. I feel like the words "thank you" are just not enough. I know in my head that it is not rocket science; when someone offers a kind word, or offers some sort of help-whether it be lending an ear, offering a shoulder to cry on, or delivering a hot meal, the only words necessary are "thank you". I teach/remind children to say thank you everyday. However I feel that in my current situation, words are not enough, or perhaps they are just too simple.

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.

Chemotherapy Treatment #3

I had chemo Friday, October 12. My liver functions were almost completely normal. They did drop carboplatin, one of the chemo drugs that makes me feel horrible, and the result was a reprieve from feeling horrible for a week. In fact this round was much easier. Minimal nausea and still no vomiting. I have had a good appetite...my only real symptom is fatigue.

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.

A Teacher Never Knows Where Her Influence Will End

On the first day of school this year, I told all of my students that like it or not, they are on this journey with me. I have found that by including them dispels rumors and helps them (and me) process everything that is happening.

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."

Welcome to Holland

When I was studying to be a Special Education teacher I came across a work written by a parent describing what it is like to raise a child with a disability. The piece resonates with me to this day, and recently it has taken on new meaning. I feel the same about having cancer as this parent feels about raising a child with disabilities. See what you think:

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

After the NYC debacle, I was ordered by my oncologist to stay home from work for a week. I figured this would be a wonderful opportunity to catch up on my life...however my doc must know her stuff because I spent the week in bed and I accomplished nothing other than rest.

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.

For the Cause

I have mixed emotions about this post.

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.

A Surreal Experience

Around the time I was getting diagnosed with cancer, I committed to giving my sister Beth a baby shower. I figured it would be fun to do something nice for my sister after all the childhood years I spent torturing her. Besides, it would give me something to look forward to during treatment (and of course an excuse to go to New York City). I enlisted help with planning and preparations from some of Beth's family and friends in NYC. We were extremely careful to pick a weekend that was just before chemo, as those are my best weeks and there would be little chance of me being ill...or so I thought.

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

Chemotherapy Treatment #2

I am told that chemo is cyclical, and so far I believe this is true...sort of. The following is the record of what my second chemo cycle was like day by day. Although my daily account of chemo side effects may or may not be of interest to you, I need to start keeping track so I know what to expect next time. Therefore, the following is for me as much as it is for you.

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.

Sunday
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

On Monday I went to work. I actually accomplished quite a bit at work, but I felt like I'd been in a hot tub too. My limbs felt like jello all day and I was absolutely drained. After work I Scott and I went back to the oncologist where I had a complete meltdown. I think was just exhausted and stressed about work. I took my Neulasta shot in a back room in a recliner because last time I had the shot I almost passed out. Wendy came to my rescue for a brief counseling session. I absolutely adore her. She one of the nurses at the office - her title eludes me at the moment. I slept on the way home from my shot, and got into bed without dinner at about 5:30pm. I was so exhausted, I felt like I couldn't get up to pour a glass of water for myself.

Wendy ALWAYS makes everything better! :)

Tuesday

I did not go to work on Tuesday. Instead, I stayed in bed all day. I did not eat. I did not watch TV. I did not enjoy myself (except for when mom and Bean came to visit). I just slept and laid in bed. I had a low grade temperature. In the evening, I dragged my butt out of bed to get my nails done. It took everything I had to get there and back. I still had serious aversions to food and eating. I ate three mini bagels with light cream cheese and jam throughout the day and drank water. It was all I could muster.

Wednesday

I went to work for an hour at the crack of dawn to flip over my lesson plans for the sub. Then it was straight back to bed until about 3:00pm. My appetite started to return. I ate three meals eggs, pasta, steak. Everything went through me, but at least I had an appetite! Low grade fever of 99.3.

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?

I'm Too Sexy For My Hair

Beginning on day 10 after my first chemotherapy treatment, my hair started to come out...just a few strands here and there. On day 15 (yesterday), my hair was coming out in tufts. It was gross and kind of freaky to those around me. Personally, I thought it was awesome! It did not hurt, and I could pull out bunches at a time. So, when we went to my brother and sister-in-law's house for the Ohio State game, I thought I would show off my new party trick. My sister-in-law seemed to think it was kinda of crazy and kind of cool when I reached up and pulled out a tuft of hair. On the other hand, my mother-in-law looked like she was going to pass out and cry all at the same time. It was also geeking out my husband. Had I been alone, I would have sat there, watching the OSU game and pulling all of my hair out. Since pulling your own hair out by the handful is not considered socially acceptable, we decided to shave off my hair at halftime. So it goes, now I am one bald babe.

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:

Man-Day /ˈmænˌdeɪ/ Pronunciation Key - Show Spelled Pronunciation[man-dey]

–noun, plural man-days.

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.

---

[Origin: 2001–02]

Dictionary.com Unabridged (v 1.1)
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