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.
Thursday, October 18, 2007
Sunday, October 14, 2007
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.
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 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."
Saturday, October 6, 2007
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.
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
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.
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
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.
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.
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