Friday, December 28, 2007

Farewell 2007

Can you believe we are approaching the end of 2007 and welcoming 2008? What a year 2007 was indeed. The first half of the year was a period of celebration. The scare from the previous Summer and Fall had us pulling out the stops and living with a new energized awareness.

Mid-year began with what I refer to as the roller coaster ride. Unfortunately, most of the ride was with my family and friends joining me in the front seat in a downward spiral without a throttle or brakes. It was a period I care not to repeat. Trying locate a cancer treatment center that provided comfort as well as the ability to extend and provide quality of life was more challenging than one could imagine. Choosing Dr. Grothey and the Mayo clinic has been the right choice.

Rounding out the year, the holiday season found me living through the most frightened state I have experienced. The early part of the season was emotionally painful. As I write this, I recognize that I came out of it experiencing the true meaning of the season. This past week has found me in a place of inner peace and great hope.

The last day of 2007 will have me at Mayo undergoing my first scans since this new treatment regimen began in September. I am experiencing a calm that I cannot explain. An inner voice is telling me everything will be fine. I am not going to use my energy worrying about something I have no control over at this point. I know that I am being lifted by many, many prayers and support.

One Christmas gift I must share with you. It brought me to tears as I was overwhelmed by the presentation. We've all heard how simple things given from the heart are the most meaningful and memorable gifts. My daughter-in-law, Heather, had been working behind the scenes contacting many of the special people in my life. She sent each of them fabric squares to inscribe with phrases and words of support. The presentation on Christmas Eve was the squares she had received to date. She will be creating a quilt that will surround me with literal love. Indeed a gift with meaning and one that cannot be purchased in a store. Thank you all that contributed....and those that have not had time to participate, it's not too late!

As I close on what will most likely be my last post of 2007, I want to thank all of you for all of your comfort, support and prayers this past year. You are all indeed my own special angels. My hope is I can provide the same for all of you in the future.

May 2008 find you with contentment in your hearts, acknowledging daily life celebrations and the blessings of health.

Thursday, December 20, 2007

Christmas Is Coming

It's been a busy week. I've been driving back and forth to Mayo Clinic in Rochester. Initially, my appointment was on Monday. When I met with Dr. Grothey at 1:30 he discussed with me the option of the once every three week treatment regimen again. I was convinced that this was the way to go, as I am still strong and able to accept the stronger infusion. He recognizes that I want to live a life with exuberance and he wants me to continue doing so. His term was 'my jetsetting celebrity'.

When I went up to the chemo floor after my appointment with Dr. Grothey, I was turned away as it was too late in the day to begin treatment. It is a five hour infusion and the nurses weren't too excited about staying until 7:00 p.m. So....back to Mayo yesterday for treatment.

This treatment will require that I receive a Neulasta injection tomorrow morning. I've heard the side effects from this can be worse than Neupogen (Lord help me!) I will need to go back to Mayo on the 31st for blood tests, as this is the time my healthy cells will bottom out and they want to keep close monitoring, as this could be very detrimental to my continued health. (Okay, I'll say it, possible hospitalization) I will also have my first CT scans that morning. Yes...I will be growing more anxious as the day approaches.

So far today I am feeling well. Tomorrow will be the day that begins showing the telltale signs of toxins running through my body and waging their war. I've been told that this will be much more difficult for me when it comes to side effects. Timing couldn't be worse, as Christmas preparations are high on my list. One thing I have learned is not to sweat the small stuff. I will take that into consideration when seeing unfinished tasks.

I am working on getting edited copies of our Montel Show appearance. My hope is to upload it on my kathybienapfl.blogspot site. I will let you know when I have this accomplished. There has been high interest from people that missed the airing.

The two week treatment break was a blessing. I was able to accomplish so many things. Christmas shopping, socializing, making the trip to New York...just feeling like a human being. It's amazing how the universe works when one opens their heart and is accepting of the larger plan.

If I do not have a chance to write before Christmas, please remember to enjoy the day for what it was meant to be. Love your families and recognize the small wonders the day will surely bring.

May the blessing and beauty of this season be with you now and throughout the new year.

Friday, December 14, 2007

Montel - Thank You



We had a screening party yesterday. I was able view the show surrounded by people that have provided me with love, support and comfort. What a wonderful experience. Thank you all that were involved in the planning of the 'premiere'.

I am aware that a number of you were not able to see the show. Copies of the show are being reproduced on dvd and I will have them in approximately one week. When I receive them, I will upload the show to my blogspot as well as youtube.

My inbox has been filled with many positive letters. Thank you so much for your comments. Your positive response has filled my heart with joy!

Baby steps....save lives.

Thursday, December 13, 2007

The day is greeting me with both apprehension and excitement. Our appearance on the Montel Williams show airs today. Montel gave me the opportunity to explain my early symptoms and how I was misdiagnosed. Early screening is a message I hope many people learn from the show. The thought of saving just one life brings me great hope!!!!

I will comment on my disappointment of the local media. I had communicated with several contacts, including the local Fox affiliate that airs the Montel show. In my communication I explained my need to get the word out about early screening. My hope was they would at least mention today's show. Not to get my face on local media...but to assist me in causing change in the discussion of colon cancer. I am learning quickly that it is a taboo subject.

This may be an assumption on my part...I have to wonder if the show was related to breast cancer screening if there would have been publicity. Breasts are wonderful...they provide nourishment, comfort and enjoyment. Colons create fecal matter. What people do not recognize is that more people die from colon cancer each year than breast cancer. These statistics are not known due to the imbalance of awareness.

Montel provided the engine...I will continue to fuel it and get the message out.


Monday, December 10, 2007

It's a Wonderful Life


By now, I am sure a majority of you have watched a seasonal favorite 'It's a Wonderful life'. The storyline is to help us all see and appreciate the many good things that surround us on a daily basis.

As difficult as it is to explain, I have found that receiving the diagnosis of cancer, specifically Stage IV, is very similar to the movie in many ways. Personally, I felt my life was very much like George Bailey's. There were things that happened when I was younger that haunted me for years. Discontent would be a good description of how I lived on a daily basis...always looking for something better (or what I thought was better).

It seems I am learning daily that the things that I thought I was missing were with me all along. The material spoils, as much as we would all like to have them, are no longer of high importance. The relationships that I have with my family has grown stronger and I have a true appreciation of the 'meaning' of family. Friendships and the outpouring of support and love has been amazingly uplifting. What I didn't recognize was the Lord has always provided for me, my family and friends have always been there. What I now see was I did not accept them as I felt I was undeserving.

The point that I am trying to communicate is that we are all George Baily at one time or another. It seems it requires something to rock our world to recognize that we are all provided for....just look within.

The Holiday season causes many stresses. Unfortunately, the busyness of it all takes away from the true meaning. Give yourself your own true gift. Take time to recognize all the wonderful things that are in your life and taking place around you. Open your heart....what matters will come to you.

Of course I have to close with this...'Every time a bell rings an angel gets its wings.' You are all my angels. Your wings protect me and hold me with love daily.

Saturday, December 8, 2007

Sneak Peak


If you are interested in getting a sneak peak, the Montel Williams website has an introduction to Thursday's show.

Simply go to: http://www.montelshow.com/ and select the Thursday link.

You'll see Eileen with me hugging...pretty sweet.

Friday, December 7, 2007

We're Back!!!

We're back!!! What a wonderful and memorable experience.

The word that colorectal cancer afflicts many age groups and to insist on screening will be out!!!!

Manhattan was bustling with holiday shoppers. The Rockefeller Christmas tree was magnificent!!! Most importantly, Montel Williams is a truly caring man. He has the warmest eyes that reveal a soul of kindness and compassion.

I spent several hours shooting background/introduction footage at the studio on Tuesday. It's interesting to see how a creative team makes things happen. The staff; producers, director, camera men, etc. were amazingly nice and accommodating.

A second reunion with my son, Jeff, was a gift in itself. We all enjoyed spending time together, as we had a free day on Wednesday.

I will not go into detail about the show. I will tell you that I am the first featured guest and then Dick, Eileen & Jeff join me on stage. After my interview, two other families that have lost loved ones to cancer return after having been on the show previously.

The show is titled '6 Months to Live'. It airs next Thursday, December 13th. Check your local listings.

Six months refers to a documentary being featured on the Biography Channel this month. http://www.biography.com/listings/episode_details.do?episodeid=253816&airingid=258360

No more details regarding the show itself.... I will tell you, there is a surprise at the end of my interview with Montel.

Get the word out!!!! My hope is my appearance saves lives.

Thursday, December 6, 2007

It's Really Happening!

Good Morning from New York City. As you can imagine, I'm anxious this morning.

The car for the Montel Williams show will be picking us up at 10:45 a.m. There's no turning back. The cameras are set to roll and I'm going to be up on the stage trying to put on a knowledgable and brave face.

Tuesday was pre-production. The staff spent several hours with me interviewing and creating an introduction for today. It was fun...yet we are discussing a very emotional subject and I was drained by the time we left the studio.

I'm not the only one on this journey. If you could all send positive thoughts to Dick, Jeff & Eileen, we could all use special wings to help carry us through this emotional day.

My love to all of you.

Friday, November 30, 2007

Montel Williams

How is it said? Be careful what you wish for?

I have been hoping to find a way to communicate and educate on the subject of colorectal cancer. Along with CaringBridge, I have been writing on my own blogspot as well as Blog For a Cure. My hope was the more I wrote, the more the subject would be "Googled" and my journey would be read and the message spread. This is not just a disease of the old!!!

It worked! The Montel Williams show contacted me today. A producer from the show ran across my story and found it inspiring. After a bit of discussion, I was invited to share my story. What a gift! Dick and Eileen will be joining me and featured on the show as well. We head to New York next week for taping Tuesday, Wednesday and Thursday. The show is focusing on leaving a legacy. Amazing, as that very subject has been weighing heavy and working on my emotions at a higher level as of late

I am fully aware that I am no different than any other cancer survivor fighting their own battle. I will not question why my blog caught the attention of the show. I do know I will do my best to represent all of us surviving and living with this daily.

Wish us luck! I'm looking forward to updating all of you upon our return.

Tuesday, November 27, 2007

This past week has been very difficult for me both physically and emotionally.

On a high note, I have completed my third cycle of treatment. Thankfully, my most recent blood results showed that I am still strong and have the ability to continue with my current regimen. Although I dislike daily Neupogen injections, as they cause deep bone pain, I am very fortunate to have it available to me. Without it, I would not have been able to continue treatment. Right now I will be enjoying a two week break and energizing myself for the next cycle.

Starting last week, the beginning of the "Holiday Season", my emotions ran amuck. Will I be here next year to enjoy another Thanksgiving? Christmas? I'm not living with statistics or odds, but, I have to admit, it is difficult to ignore them at times. Then, as I travel through this journey, I have such a great appreciation for the meaning of the Season. I have taken the time to reflect and appreciate memories from the past and look forward to creating future memories.

As I was going through my funk, I evidently picked up a passing virus. As hard as I tried, I could not recover from last weeks treatment. I felt like I had been hit by a Mack truck. My body felt like it was slowly breaking down. I was very close to asking Dick to take me to the hospital on Saturday. Sunday night I was mentally preparing myself for Monday's infusion and my body was telling me no. When I arrived at Mayo, I thought for sure I was going to be sent away. I was surprised and thankful it was a go.

It's a new week. Today was a great day. I was up early and worked around the house. By mid-morning I was out for the first of my next series of injections, ran a few errands, enjoyed acupuncture and "Target Tuesday" with Eileen. I arrived home at 6:30 p.m. feeling pretty darn good.

The funk of last week has passed. I just keep learning. Don't give up....never give up.

Tuesday, November 13, 2007

I received a lovely note from my dear friend Ann yesterday. She was responding to my most recent post and had her own sweet words of wisdom to share with me.

Her note touched me so much that I asked if I could share it with all of you. We all experience life challenges. I hope you find Ann's words as beautiful and encouraging as I found them.

"I once wrote a long, drawn out explanation of the darkness and the light...if for nothing other than to create some kind of "reason" for the ups and downs that were causing me distress...and it went something like this:

In beginning drawing class one of the first things they teach you is that shadow is just as important as light. A composition is stronger visually and is far more appealing with the substance shadow lends. That being said, the co-existence of light along side the darkness is equally vital to creating a successful work of art...it's all about balance. Staying somewhere in between is most likely comfortable for most of us...but you're a wonderful, unique masterpiece Kathy, and you have these challenges in front of you because you have the wisdom to understand and the strength to endure.

The hard times must be remembered long enough to appreciate the glorious highs that shine on our shoulders. And when the weight of the world is resting in that very place...you'll feel the warmth of happier times to get you through..."

Monday, November 12, 2007

Return From Girls Trip

I'm sitting in my infusion chair at Mayo going between two moods. The highs and lows of my current life are swinging like a pendulum. The balancing act can be difficult and I do all I can to stand firm footed without falling to either side.

The girls trip in the desert was awesome! What could be better than enjoying paradise with four amazingly intelligent and fun loving women? The days consisted of sitting around the pool sipping on champagne, retail therapy, yummy food and then ending each day in the hot tub giggling like teenagers with more adult beverages of choice. Although, if my memory serves me right, menopausal women giggle much more than teenagers. Maybe I should refer to the hot tub experience as giggling like middle-aged women.

I flew into Minneapolis last evening, threw my luggage in the back of my car and proceeded to drive to Rochester. I then booked myself into the hotel and mentally prepared myself for today. Thus.... the pendulum swing.

The plan had been that the current infusion would be the first of the every three week regiment. I was looking forward to having the infusion, knowing I would not be feeling well for a few days this week. That was okay, as I knew I would be coming out of it with extra time to recover and live a "normal" life. I guess the stars are not aligned....that plan has been thrown out the window.

Evidently, my blood counts are still bottomed out. My doctor explained that if I were go to the three week infusion, as outlined previously, I would most likely end up in the hospital come Thanksgiving, fighting for my life and trying to get fevers and infections under control.

The thought had been that with the additional time off these past weeks, my blood would recover and I would be strong and ready to kick this beast with stronger infusions. Not only is my blood not healthy, I am having to accept decreased dosages of chemo and adding Neupogen injections to the mix. (Yes, I said the "N" word!) The doctor is being kind and only requiring four injections.

Needless to say, this has been an emotional morning for me. It's difficult living in paradise one minute and then having to accept the wise words of Dr. Bad News.

Alas....at least I had the opportunity to experience paradise and I still have the memories of California to get me through it. I have Sue and the girls to thank for that. Thank you, ladies!

Oh....and if the above doesn't make sense, I have my infusion of Benedryl to thank for that! Apologies in advance.

Monday, November 5, 2007

I'm busily preparing for a girls trip out to California. I'm running errands, packing and cleaning today. Before leaving, I wanted to write and share with you that I have been using my limited creative ability and working on my own official blog. Simply follow this link and you will find me. http://kathybienapfl.blogspot.com/

The purpose for beginning my own blog is for other cancer survivors. Since I have a rare form of colorectal cancer, it is difficult to find information on the internet. I guess the blog is my way of reaching out to other fighters. This will give them the opportunity to read about my journey. Hopefully this will help in their own decision making and questions of the unknown. From my own experience, I know it's comforting to know that there are others that share my fear.

I plan to continue my CaringBridge entries. Due to the confidential nature of CaringBridge, I have not been able to reach out to other cancer patients and caregivers. Now others can simply Google 'anal cancer blog' and they will eventually find me. A much needed addition to the internet. I've done a lot of internet research since this diagnosis with very little to refer to.

Hope you all have a great week. I doubt I will come back rested. The fun will more than make up for my next chemo treatment which is taking place bright and early next Monday morning....ugh!

Peace and joy to all of you.

Friday, November 2, 2007

TUESDAY, OCTOBER 30, 2007 10:01 AM, CDT

I was able to enjoy seeing a huge smile on Dr. Grothey's face yesterday. It had been a month since we last saw him and three chemo infusions. When I reported that my cough has disappeared and the pain I was feeling is gone, he was quite happy. He stated 'good clinical outcome'. I questioned if it was too soon to really be able to experience tumor shrinkage, his response was absolutely not. He explained that by using the right combination of drugs it is possible to see early response.

My blood counts are quite unhealthy yet. I was not able to receive chemo yesterday. After lengthy discussion, we have decided to start the once every three week schedule with boosters of Neulasta. Although the weekly infusion is easier on my recovery, it is difficult for my body to remake white blood cells in time for the next treatment. Actually, he told me he thinks I will be able to cut my chemo down to once a month. Let's talk about living!!!!!

Dr. Grothey is very human and has a great sense of humor. I mentioned I had a girls trip planned next week. He gave me a pass on treatment. With a look of knowing, he asked for details upon our next meeting. Who would think a world class Mayo doctor would be so interested in the details of my personal life. The gleam in his eye was very telling that he knows me well....lol.

We have been enjoying Jeff's time back home. He returns back to Pennsylvania on Thursday. I can't believe how quickly time has passed. My anxiety is growing knowing he will soon be leaving. We have enjoyed having him here with us. He has become such a mature young man. It has been a true gift to have him back. Issues that plagued a teenager are long forgotten. Love and appreciation have been felt and spoken.

My spirits are high. I feel that I am going to beat this beast and kick it to the curb. I know that I have been held up by all of you. Your continued prayers and miracle wishes are heard and in motion.
THURSDAY, OCTOBER 25, 2007 08:17 AM, CDT

I missed Oprah on Monday. I was contacted by several people to watch it. Fortunately, Oprah has a link on her website that I found very inspirational.

Following is the link. Click on the Watch Randy's Famous 'Last Lecture' link within Oprah's page.
http://www2.oprah.com/health/oz/oz_20071022_350_106.jhtml?promocode=HP33

Randy Pausch is a true inspiration. I have already experienced 'the' wake up call. Don't wait until you are in my position to follow Randy's advice.

I am living one of my dreams as I type this. Jeff is home and it is wonderful! He has grown to be quite a caring and mature young man. God has blessed me.

Enjoy the video. As my good friend Sue reminds me...Live Like You Are Dying.
MONDAY, OCTOBER 15, 2007 08:58 PM, CDT

Exciting news!!!! Jeff is coming home on Friday!!!!! It's been almost four years since I hugged my first born. I'm beside myself with excitement.

The timing could not be more perfect. I am on a two week chemo break. With the break, I will have the energy to do the things that I want while he is home. Isn't it strange how things work? Maybe not strange...more of a blessing.

You may be asking....why a two week chemo break? Let me explain. Last week while I was in for my third infusion, I was advised that I will be off the upcoming two weeks. The way it was explained to me is I'm on three weeks, off two, on three, off two and on three more. If things go the way they are intended, that will complete my treatment sometime mid-January.

I have to tell you, I think this stuff they are loading my body with is working. I had been experiencing a terrible cough....constant and irritating. I also had pain in what I thought was my incision area from surgery in June. Simultaneously, the cough and pain have disappeared. I am thinking positively and believing that miracles are taking place.

It's a good thing I have this break. The third week of treatment had me in bed for three days. I can't imagine what a fourth week on the Taxol/Carbo combo would have been like. My body was being kicked to the curb and I didn't know how I was going to sustain. Obviously, the professionals saw it coming. Guess they know what they're doing, eh?

Today, I found myself singing in the car. Another experience I haven't enjoyed in quite some time, as it caused me to be out of breath. Wow...it felt great! Singing at the top of my lungs like a crazy person in the car by myself. 'So you think you can stone me and spit in my eye- So you think you can love me and leave me to die-Oh baby-cant do this to me baby-Just gotta get out-just gotta get right outta here' Yup....screaming out Queen. Gotta love it.

At home, we are experiencing a phenomenon in our home we have not enjoyed in months. I have been watching Dick and trying to understand why he looks so lost. Knock-knock. I think I've figured it out. We are not responding to a crisis. It seems that's how we have been living since the end of May. Strange. Who would think it would be difficult to become accustomed to living almost normal. Thank you Lord.

So....there's the update. Nothing but good news.

I know that I would not be delivering this good news if it weren't for all of you. Your prayers and well wishes.....they're working! Thank you....thank you....thank you!!!!!

Love you all!
TUESDAY, OCTOBER 02, 2007 11:30 AM, CDT

video

There was a head shaving party on Friday night. I love the results!!!!

I feel free and liberated!!!! It's an amazing discovery.

There will be more to report in my journal. Right now Eileen and I are on our way to Stillwater for an afternoon of girl fun....oh and it's Target Tuesday.

More soon....

Much love!

Miss Eileen, My Personal Stylist

MONDAY, SEPTEMBER 24, 2007 06:57 PM, CDT

Wow....this past week has been very busy! Most of it was fun and enjoyable. One almost forgets that there are wayward cells in my body still requiring stern attention.


My personal stylist, Miss Eileen, joined me last Wednesday on a wig fitting adventure. We learned that I should never be a blonde. Mid-length is a definite Glamour don't. Laughter was indeed great medicine all through the day. I also had to laugh at the prices....or I would cry. Yikes!

Knowing that I will be losing my hair, I scheduled a mother/daughter portrait sitting. We had pictures taken at Flash Photography on Thursday. What a great experience. Having pictures to document our current journey will be cherished for years to come. The photographer allowed us to capture images of our real relationship. She could see we have silly fun together as well as a deeply shared love. She also captured the fear we are currently facing. My only regret is not having Jeff with us. I miss him so much.

Thursday was also a day of prep. As we were having pictures taken I was starving.....my body was screaming for food. A colonoscopy was scheduled for Friday. You can only imagine the anxiety that was building, knowing what could be lurking deep inside my colon. I didn't express my concern, but I knew that if anything was found, we would be experiencing another life changing time in our lives.

Good news! Nothing was found!!! I have a perfect colon. As I look back, I think my doctor was as excited as I was. He kept telling me to go out and have a big celebration. I think he wanted to join us for martini's. Maybe after my next 'all clear'.

It was an amazingly beautiful Fall weekend. We met friends for a weekend of fun up north. Fall is my favorite time of the year. I felt like God had planned the color changes and love of friends just for me. What a wonderful respite before the beginning of a new chemo journey.

Today was my first chemo experience with Mayo. I was treated like a princess... Okay, at my age, a queen. They showed me to a private infusion room where I had a comfortable bed awaiting me and a flat screen tv. They treated me like an individual and showed great care and concern. I was immediately loopy from my Benadryl high and slept through the rest of the infusion process. I now have derivatives of the Yew tree floating through me....kicking those cancer cells for good! Yes, a Yew tree IS going to save my life.

So...that's what I've been up to. Being off of chemo for a month felt great...but I know that isn't helping me long term. I am now receiving weekly infusions. The nurses explained that my side effects should be less severe and very tolerable. Lord, hear my prayers.
FRIDAY, SEPTEMBER 14, 2007 09:58 AM, CDT

Mayo it is!

As much as I enjoyed Zion....Mayo is that much more. What an impressive facility. State of the art, comforting and most of all....human.

We met with Dr. Axel Grothey yesterday afternoon. His background in research and treatment is stellar. He is a champion in his field. How could I not choose him for my doctor? How lucky am I? http://www.mayoclinic.org/oncology-rst/14263734.html Google him....you'll see.

He chose a treatment plan that is totally different than what has been suggested thus far. Zion recommended what is basically a derivative of 5-FU, which is what I have been treated with up to this point. It hasn't been working. Dr. Grothey recommended weekly infusions of Paclitaxel and Carboplatin. I'm going to have to do my research on this one as it is totally new to me.

Wigs and fun hats will be in my future. I will lose my hair. Do I care? NO! Treat me and extend my life. I'm thinking a head shaving party will be taking place in about a month. A required cathartic experience.

I know that friends and family were excited about me going to Zion. I didn't want to disappoint them. At the end of the day, when you list all of the pros and cons, Zion did not offer more than Mayo has to offer. I was expecting a more natural approach from CTCA. I thought they would be pumping me with vitamin packs, monitoring a special diet and offering complementary therapies as part of their treatment plan. That is not their approach. They fill you with toxic drugs....just like the other guys.

Zion educates you on mind, body and spirit. Mayo has a beautiful setting that offers the same resources. The environment at Mayo was just more soothing and professional. The following will help you understand how I reached my final conclusion. If you were to have surgery, would you want a surgeon that has performed your specific procedures 1,000 times or 100 times?

The stress of this most recent journey has taken its toll. I am worn out. My mind has not been able to rest. Dick has been dealing with his own anxiety and stresses as well. I wish we could just escape this...just for a bit.


WEDNESDAY, SEPTEMBER 12, 2007 09:27 AM, CDT

There's no place like home.....there's no place like home.

We have returned from our journey to Zion with very encouraging and positive news!

After being poked, prodded and scanned, we have learned that my cancer has not spread...not even to my left lung! I have also been told that a new area of growth in my right lung, as indicated during my emergency room visit, is most likely scar tissue from my surgery in July! Yes, my existing tumor has grown and there is new growth in the lining of my lung. But it is contained!!!! I was so fearful that the cancer had attached to my ribs....they are clear! My liver....just as healthy as it could be! My brain....I know, at times is questionable....but no tumors!!!

The staff at CTCA are amazed at my health and vitality. My blood work returned with remarkable results. Aside from these nuisance tumors in my lung, I'm a very healthy person!!!

We met with the oncologist yesterday. She outlined a treatment regime that holds great promise. A combination of Xeloda (a pill form of chemotherapy) and Cisplatin. This would require a trip to Zion every three weeks for a one day infusion. Prior to the third cycle of this regiment, she suggests additional scans to see if there is change in tumor growth. If it is found that the combination is not working, she will suggest surgery or another treatment option. She did not promise a cure. She does feel this is very treatable. I will always require a watchful eye on new growth in other organs.

CTCA is a wonderful facility. The people are very kind and treat you as a whole person....not a number. They are there to educate and support. Each department met with us to describe their role in the organization and how they are there to assist you in healing. It is about mind, body and spirit. They understand it not just drugs that treat cancer patients. They really do care!

I have been carrying the burden of a life sentence since our meeting with Sloan-Kettering in July. I no longer feel that way!! Cancer Treatment Centers of America has filled me with renewed hope.

We leave for Mayo this afternoon. It will be interesting to see what they suggest and how they compare to CTCA. Zion definitely felt like home and the right place to be. Mayo will have to work hard to convince me otherwise.

As one of the physicians told me yesterday, 'Looking at you, I would never know you have cancer. You are a healthy spirit. Continue to live fully.' I plan to...with full vigor!

Thank you so much for your support and prayers. I have to tell you....I believe in miracles. You are helping make them happen.
TUESDAY, SEPTEMBER 04, 2007 09:23 AM, CDT

I'm off to see the Wizard!

As my good friend Ann wrote, 'Just like Dorothy in the Wizard of Oz...'The next time I go looking for my heart's desire I'll look no further than my own back yard...'' I just never realized it would literally be my childhood backyard! I'm thinking I need to find a pair of ruby red slippers that sparkle and shine!

I am excited, fearful, anxious and hopeful to meet with the specialists at Cancer Treatment Centers of America. Since I posted that I would be investigating their treatment options, I have received many positive notes. There are many Stage IV survivors out there that were told to make peace with the world and their creator. Once they visited CTCA things changed for them. I'm thinking Zion is a good name for a town of healing as its meaning is Promised Land.

Wish me luck as I go off to be scanned, poked, prodded and educated.....and possibly meet the Wizard! (No flying monkey's please!)

My love to you all.
FRIDAY, AUGUST 31, 2007 12:12 PM, CDT

I think I said something about this being a roller coaster of ride kind of week. Well, my words were indeed true.

The Mayo Clinic must be bursting at the seams with patients. With referrals, personal phone calls from people with connections and my own personal begging, the soonest we will get in to see the team is September 13 - 14.

That is just not soon enough! I'm sorry! I just don't want to give these messed up cells any more time to breed and multiply. I have been reading that when you are taken off of chemo, such as my current situation, one's body is weakened and it allows the cells to grow even faster!

So, I've been on the phone with Cancer Treatment Centers of America in Zion, Illinois. (my home town, can you believe it?) They are able to get me in next Wednesday. Evidently they do thorough testing and reviews, as they might want to keep me as long as five days.

Maybe this is just the way things are supposed to work. At least Dick and I will be able to hear what CTCA has to offer prior to seeing Mayo. It will be a great comparison and learning experience all around. Like we need more education on the subject, eh?

I have been advised that a candle has been lit in my honor at the Sistine Chapel in Rome! My goodness, if that isn't a direct prayer line to the powers that be, I don't know what will work!!! Hey, but don't think you need to stop praying! I'll still take as many personal prayers, prayer chains, candle lighting, masses and just plain good positive thoughts as I can get!!! Thank you.

Emotionally, it has been a rather difficult week for me. Evidently I didn't quite get the lesson that needed to be learned when we were going through this a year ago. I'm thinking I was awakened and somehow hit the snooze button. I'm listening now....do you hear me? No more snooze button! Could something please bong me on the head and give me a few clues as to what I'm missing? I don't need direct answers....just a little enlightening.

It's Labor Day weekend. Where the heck did the summer go? Wow...times passes quickly when you're having fun....lol.

Please have a safe and memory making weekend.
MONDAY, AUGUST 27, 2007 04:24 PM, CDT

Ya know, when the educated people tell you that your cancer is incurable...they mean it!!!

I met with the oncologist today. He reviewed my latest CT scan results only to agree with me that my current chemo regiment is not working. So...no treatment today.

I had no intention in having treatment anyway, as I want to keep myself healthy in case I have surgery in the cards in the not too distant future.

Well, I'm a step ahead. I started communicating with Mayo last week. Now my oncologist has put me on the fast track with them, and my friend Steve is making his calls into them as well. The Oncology department called me today to let me know they are trying to make room for me. Evidently they put an entire team together, so it's more than just an appointment with a handshake.

I'm thinking they are going to want to remove the new nodules that are quietly making themselves cozy in my left lung. My surgeon says it's time to pull out the big guns and remove much more than that. He started naming off chest wall, ribs, a lung.....scary, eh?

I've also been accepted at Cancer Treatment Center of America in Zion. They could make room for me as soon as Thursday this week. They are biting at the bit to get me as a patient. I am getting the impression they are very good with treatment.... What about surgery?

Eileen has offered me one of her lungs. Brings tears to my eyes. My answer to her is shopping. I'm learning every time I get bad news we go shopping and I buy her another piece of Betsey Johnson jewelry. The collection is growing!

So...over the next few days, if I could ask that you send positive thoughts to the Mayo people to get me in sooner than later, that would be great!

I'll keep you all posted. It could be quite an interesting ride this week.

My love to all of you!
THURSDAY, AUGUST 23, 2007 10:13 AM, CDT

Even with the gloomiest of days there are gifts wrapped in brightly colored packages.

Eileen and I were spending the day together yesterday. As we were driving along, a song played on the radio. She started to describe the band and the meaning of the song to me. She also explained she had such a difficult time with the entire CD a year ago, as most of the songs were related to a band members grandmother's cancer plight.

She continued to explain that she couldn't understand the completely negative message they were delivering about the disease. Yes, it is life changing and an experience no family should have to go through. She then turned to me and explained all of the positive things that have happened since my diagnosis.

She said she never knew there were so many warm and caring people in the world that had genuine concern about others. She recognized how our family and friends had become closer and she recognizes the love and compassion that is shared between all of us. She has also recognized at and early age to appreciate and enjoy her mother.

Since the beginning of this journey I have been trying to focus on all of the good. In the back of my mind there was a legacy or sorts I wanted to leave with Eileen. Something that would help her through the difficult days she undoubtedly will face during her own life journey. Whether I am here for six months or 30 more years, there was one important message I have hoped I would be able to pass to her. Look for the small gifts each day brings. These are the things that will carry you through life challenges.

I cannot tell you the inner glow I was enjoying the rest of the day....and of course it continues to carry me yet today. I have indeed made a difference. What a gift!

Another song started to play on the radio and the subject changed.

Shortly thereafter she had a question. 'Mom, can you have a lung transplant?' I just smiled at her.



Small gifts....small places. Enjoy your car rides.
TUESDAY, AUGUST 21, 2007 09:30 PM, CDT

Let's start with the good news. After only two Neuopgen injections, my white blood count is at 18.6. Significantly higher than it needs to be. Yahoo!!!

One might be asking, gosh, I thought Kathy was denied a blood test to see what her counts were at?

Thus, the story begins....

There is one thing I did not share in my post yesterday. I've been dealing with this irritating cough that appeared to be getting worse by the day since Friday. I was put on a Z-pak yesterday without too many questions asked. As I was back in the office again today for my next injection, I mentioned I was growing very concerned about the cough. It was suggested that I go to the emergency room where they could do a more thorough examination than the doctors office. (Strange, I know.)

I won't bore you with details and get right to it. Emergency room doctor requested a chest x-ray to see if there was any sign of pneumonia. Everything came back clear and my lungs sounded fine. Being the thorough doctor, he suggested I have an EKG as well as a CT scan of my chest, oh, and blood work. He came back with results showing no bronchial/lung infections. They don't know why I am coughing so much and we will continue to keep an eye on things.

He then shared with me my CT scan results. Evidently the chemo I have been enduring hasn't helped in any way. My cancer has grown and spread . There is significant change in the thickening of the lining of my right lung, as well as new growth near the area that was surgically removed. There is also evidence of new tumor growth in my left upper lobe.

So, what does this mean? I have no answers. All of the educated people are going to have to put their heads together and figure out a better plan. This one just isn't working.


MONDAY, AUGUST 20, 2007 06:53 PM, CDT

Life is difficult. Today certainly appeared to be more challenging than others.

Maybe I'm just worn out and I cannot cope like I was once able to. As I stated to Dick today, I am no longer the person I was just three short months ago. Please be patient with me.

Heck, I'm not patient with myself....how can I expect him to understand?

Today was Erbitux infusion day. I find it very frustrating being confined to a chair for four hours. To add to the frustration, I am pumped with Benedryl, which pretty much zaps my energy for the rest of the day.

As I was receiving my treatment, the 'Neupogen' word entered into conversation. I have been prescribed SEVEN DAYS of injections before my next chemo treatment next Monday! I must be hearing things! Did they really say seven days?

My poor nurse must have seen the horror in my eyes. I explained to her, as nicely as I could, I would not go through the injections without pain meds. Oh...and how about reducing the seven injections to...ummmm...three, since the five I had last time almost killed me! She returned with a prescription of Oxycodone, with the understanding that I would agree to five injections. It was five injections or nothing....period.

Okay, how about this for a plan? Let's get blood labs done today to see what we are starting with in white blood count department. Then we can decide from there how many injections I should have? I'm thinking we have a win/win situation with this idea. Save the insurance company $864.00 per injection and save me pain and misery.

That would be a no go....no blood work until I go in for chemo next Monday. They want to see my bright smile every day this week. I think I should just start renting space in their offices and make myself as comfortable as I can.

Survey: Is Kathy's blood test suggestion logical or was she in drug induced delirium? Comments are welcome.

I won't bore you with the details of the rest of the day. I will just repeat my first sentence.....Life is difficult.

Rainy days and Mondays.....this one got me down.

Give me 24 hours.
TUESDAY, AUGUST 14, 2007 08:46 AM, CDT

Happy Birthday to me......

It is so unlike me to make a public announcement of my special day. Normally, the least amount of attention the better. With significant life changes there is a new found appreciation for every day. Birthdays are just that much more special.

Go ahead.....fill up my inbox with your love.

Really bad, I know. I just think that when one is receiving chemo treatments on her birthday, one can stretch a little and step outside the comfort zone.

It's a beautiful day!
MONDAY, AUGUST 13, 2007 05:07 PM, CDT

I wondered why my doctor wanted to give me five days of Neupogen injections versus the three I had the last time my white blood count was down. Add a body massage to bone marrow stimulating injections and what do you get? Excruciating pain! Sunday found me down for the count, as every time I stood or walked, my body received waves of pain. No, not waves, hurricane strength pain. What a waste of a beautiful Sunday.

Knowing that my bones were indeed making marrow, I was ready for treatment today. The first thing the nurse does is take blood for the lab to check my levels. She comes back looking very sad and concerned. 'Your levels are still not good.' What? I went through all of this only to be told I still may not receive treatment? This can't be true!

The nurse explains they now have to count the levels by hand...not by machine. Great. So, the report comes back. She still doesn't understand it. She has to do some of her own calculating to see if my body can take the chemo. At this point, I am in tears. After a bit of time punching buttons on the calculator she looks up at me with a look of disbelief. My white blood count is at 23.7 K/ul. The highest healthy range is 10.8 K/ul. What, am I overdosing on white blood cells now?

I got my treatment. Six hours of it. Mix that with my continuing pain and I am one worn out puppy.

This pain will pass and I received my treatment. That's all I care about.

I'm thinking I will have a conversation with my doctor next time I see him. Easy on the Neupogen! Or hey, maybe no Neupogen.....just body massages!
WEDNESDAY, AUGUST 08, 2007 05:22 PM, CDT

No chemo today. Bummer!!!

My white blood count was lower than the last time treatment was delayed. I will be receiving Neupogen injections daily over the next five days. Treatment will resume on Monday the 13th.

My oncologist explained that my pelvic radiation has caused significant damage to my bone marrow. Evidently the pelvic area carries a large percentage of bone marrow and I will most likely never be able to reproduce consistent healthy cells.

I will be receiving Neupogen injections prior to every treatment from now on....and they hurt!

Thank goodness these drug companies continue to create these drugs. Without the likes of Neupogen, no chemotherapy. Without chemotherapy.....well, you know.

Thanks for your prayers....can I have a rain check until Monday?
TUESDAY, AUGUST 07, 2007 09:20 AM, CDT

We have returned from our whirlwind travel odyssey. It was the best of times...it was the worst of times.

The Four Winds grand opening was great fun. I am very proud of Dick's accomplishments and the hard work by the entire Lakes Entertainment group. The casino is beautiful and very welcoming. I am so glad I was able to experience the opening and meet many of the great people that I know have been pulling for me.

Friday night found me with friends and family. What a wonderful evening of laughter. There is nothing like being surrounded with friends that have known you since you were seven to hurt your gut from laughter. You are all so special to me.

My 30th class reunion found me very mixed, emotionally. I had been looking forward to seeing classmates for years. It is always fun to see how people have changed...but really haven't. Believe it or not, I was always rather quiet and reserved in school. There are not many people that remember me. That's okay....it's fun to observe.

It was very difficult bidding my adieus, as odds of my attending my 40th reunion, well...I won't say. As I was leaving, I wanted to scream out to my classmates my life situation. It was painful having to hold in my tears. Actually, I learned on this trip that tears physically hurt due to medications....so I don't cry.

My life has changed significantly these past months. I am no longer able to dance until dawn, partake in alcoholic numbness or enjoy the art of gastronomy. With that, there are special moments that I would not have recognized prior to all this that I now cherish.

My mood is low and probably will be for the next few days. Tomorrow brings the next round of chemo....which takes a bit more of me with every infusion.
THURSDAY, AUGUST 02, 2007 09:04 AM, CDT

Life can change in an instant. The bridge collapse in Minneapolis is a reminder of how life can go from normal to chaotic in moments.

It is very surreal. There were many of us from Minnesota celebrating grand opening festivities at the new Four Winds Casino when word reached us. It was frightening to know we were so far away from a local tragedy. Personally, I felt both helpless and guilty at the same time.

My heart aches for the the families that are experiencing this tragic event. My prayers are with the rescue workers and individuals involved in the rescue efforts and the challenges they will face.

Life changing experiences. They come in many packages.
MONDAY, JULY 30, 2007 08:41 AM, CDT

On a separate note, Dick just shared with me that Joan Harrington passed away this weekend

I write this with tears streaming from my eyes. It's hard to express how her passing has hit me. The reality of another cancer fighter not beating this beast is so much more personal now.

God Bless you Joan. You fought a valiant fight. My prayers are with you and your beautiful children.

I know you will be that special star glimmering from up high.
MONDAY, JULY 30, 2007 08:01 AM, CDT

Acupuncture! What a difference complementary therapy makes! I can only extol the benefits. Who would have thought that placing small needles at strategic points would assist in chemotherapy recovery?

No, I wasn't out dining and socializing this weekend, but I was also not afraid I would not wake up after a nap (which is how I felt last time). No agony, just small bits of discomfort at times.

You know it works when Dick says 'guess all those needle pokes are worth it'. Heck yes....and there will definitely be more.

A very busy week ahead. I am so thankful I will be blessed with energy. There WILL be a lot of dining and socializing....grand openings, family gathering, and class reunions back in Illinois

Oh, and it wasn't just me with the great weekend. My rocker daughter met a few very nice band members at Warped tour yesterday. Evidently they need a personal shopper and have called on her services. I'm glad she recognizes she is too young to become 'involved'....but she knows how to pick them. Those boys are so cute!

Thank you, all of you, for your prayers of comfort and recovery this weekend. Between you and my Queen of acupuncture, I'm ready to hit it.

Much love.
FRIDAY, JULY 27, 2007 10:39 AM, CDT

The goodness of others have long lasting effects. One thing that I have learned through this journey is how truly caring people are.

My mother's birthday was yesterday. I was choosing her gift on Monday. The store of choice was Bibelot, as I knew there would be something there that would have meaning and touch her heart. There were so many choices, but a plaque that read 'Dance as if no one were watching, Sing as if no one were listening, Love like you have never been hurt.' was the one that spoke most to me.

As the sales girl was putting my purchase together, she could see that there was a lot of emotion involved in choosing the gift. She asked what made it so special. I explained my current situation and how I wanted something lasting for my mother. She was very quiet and wrapped the gift.

As we were saying our goodbyes, she pulled out a beautiful little red glass heart from their display. She handed it to me and shared with me 'you are loved'. I lost it right there. What a gesture. Small, but packed with so much emotion and meaning.

I carry that little heart in my pocket now. It reminds me of all of the good that is in our world. When I was receiving my chemo infusion on Wednesday, it sat out on my little table adjacent to my chair, just as a reminder of her spirit.

Small gestures of human kindness. I will be going to Bibelot today and buying the balance of their little glass hearts. My hope is that I can share a moment with several people in the future.

I think I'll go sing like no one is listening......

THURSDAY, JULY 26, 2007 09:46 AM, CDT

Yesterday's chemo infusion went very well. The Benadryl did not give me the crazy loopy feeling as it had been. That's a very good thing. It does make one question if you can become immuned to it. What does that mean in the future?

The infusion room was standing room only. I felt like I was communicating with air traffic control waiting for my chair... my home for the next several hours. I was chatting with my nurse about capacity. He agreed, they need a larger facility. We discussed the need for more staffing as well, as us baby boomer's are not getting any younger and unfortunately, their services will be in greater demand.

Neuropathy hit quickly. I had a few prescriptions to fill for nausea. As I was waiting, I decided to treat myself to a Caribou vanilla cooler. When I took the cold glass into my hands, I experienced the sting of freezer burn on my fingers tips. When I went to savor my first sip, it was as if I was swallowing shards of glass. Needless to say, I didn't get to enjoy my treat....but my neighbor did.

A wonderful woman that works with Dick, Joan Harrington, has been courageously battling lung cancer these past few years. She has been a true fighter. Unfortunately, her body is tiring and she is now in hospice. She has beautiful young daughters that could use your uplifting energy. If you have a moment, please add Joan and her young family to your intentions these next days.

God bless you Joan. Be at peace and feel the warmth of love that is being showered upon you.
TUESDAY, JULY 24, 2007 11:01 PM, CDT

Someone once asked prizefighter James J. Corbett what was the most important thing a man must do to become a champion. He replied, 'Fight one more round'. - Unknown

I am mentally prepared and ready for my next chemo infusion tomorrow. It has been far too long since my last infusion and it's time to get the party started. I need to kick this thing in the butt!

Last weeks Erbitux infusion is showing its telltale rash. It has been growing more irritating as this day has worn. I keep telling myself, 'it's a good thing....it's a good thing'. The rash means the drug is working to keep this beast from creating more ugly cells. I guess vanity needs to be put aside when you are working at becoming a prizefighter.

Eileen and I had a busy day - - - Target Tuesday. We had a nice girls lunch and then marched through Macy's, Target and Barnes and Noble. We also had a nice leisurely walk through Galleria. I have cancer? Thank you Lord for providing energy for days like today.

I will be feeling your prayers tomorrow as I fight my next winning round. You are all ever appreciated.
FRIDAY, JULY 20, 2007 04:31 AM, CDT

Yesterday was an amazing day. It is difficult to express what I am feeling. The closest I can come to explaining what I am experiencing is inner peace.

I feel that I am surrounded with so much love and support. I received so many cards and letters yesterday. It was as if the universe knew that I was running low and I needed to be filled back up. I shouldn't say so much 'I', as this experience is so much more than just me.

Thank you, all of you, for the kind words and the strength you are providing. The power of all of your positive intentions and thoughts are truly an amazing gift.

As a family, we had a peaceful and enjoyable day. We spent the evening at one of our favorite restaurants, a small Italian cafe in Edina. While we were there we experienced something we hadn't enjoyed in quite some time....laughter.

I have changed my diet significantly these past few weeks, as I am learning that there are certain foods that feed cancer. No more sugar, alcohol or red meat. It appears that with my change in diet, Dick is learning to enjoy more fruits and vegetables. If you know Dick, this is quite an accomplishment on his part. As we were finishing dinner, Dick pointed out to me how much he has been enjoying salads. As I was acknowledging this feat, Eileen piped up from across the table. 'Mom, let's get our ice skates...hell is freezing over.' I must have jolted all of the other restaurant patrons out of their seats, as it released laughter I hadn't experienced in quite some time.

I probably shouldn't condone such statements, but the timing was impeccable. Laughter is a very good thing.

We ended our day just being close. Me on my side of the bed, Eileen in he middle and Dick on the other side. Oh...and Bert, the super dog. All of us, enjoying the moment and gaining strength from each other.

Our lives are made of these small moments.
WEDNESDAY, JULY 18, 2007 07:27 PM, CDT

I woke this morning mentally preparing myself for chemo. My appointment was at 10:15. I had a melt down in front of Dick before leaving for our long day. This is more difficult for me emotionally than I want to allow myself to recognize.

We met with my doctor prior to treatment. We had a question and answer session. We shared our Sloan update and I thought our meeting was done and we would move on to our next step of the day.

My blood test results were pulled out of my ever thickening patient file. The first thing he pointed out to me was my white blood count levels. Bad news....too low for chemo today. What? We've only just begun!

Evidently my body is still spiraling from my treatment from almost a year ago. He explained that radiation therapy really does a number on the human body and it has already revolted after just one treatment...and that was three weeks ago!

I was able to stay for the Erbitux infusion. On top of that I will require a daily shot of Neupogen for the next three days. This is a colony stimulating factor. In a non-medical term, it's a growth hormone. It will build and strengthen my bone marrow, which in turn stimulates white blood cell growth.

I can't tell you the blow this is on my psyche. I am strong and healthy. My body can't be doing this to me already!

On another front, I shared my recent news with Eileen yesterday. She is devastated. The emotion that rose from deep inside her was overwhelming. I knew it would be difficult for her to hear, but her reaction was almost more than I could bear. I know that you are all praying for me....my little girl needs your prayers as well.

Life is not fair. A hard lesson being learned.
MONDAY, JULY 16, 2007 09:27 AM, CDT

We have returned from our trip to Sloan. Our news is not good. We met with Dr. O'Reilly and she went through my entire history, treatments, etc. She advised us that what I have is a very rare form of cancer. (Yes, we knew that.) With that, there are no studies or specific treatments outlined for this cancer.

It came time for questions. First question; prognosis. She looked me in the eyes and told me I have incurable cancer. Well, her word was uncurable, but I now know the proper term is incurable. That led to my next question of how long? She explained that I am treatable, just not curable. Okay, treatable for 5 years or 20 years? They really don't know these answers, but if she had to guess her answer was 5 years.

She continued to explain that I will require chronic treatment. This means I will be living with chemotherapy treatments for the rest of my life. I will be allowed short breaks for vacations, etc., Of course, this all depends on how well and long my body can tolerate all of these chemicals and the side effects that occur with them.

Basically, it comes down to prolongation of life with acceptable quality. With new drugs being created for other squamous cell cancers and phase I studies, there is hope that this news is not as ominous as it appears right now.

My plan is reduce to stress, maintain a healthy diet, exercise and live with a positive attitude. The stronger I am as a person the more tolerable treatments will be.

It is overwhelming. Not so much in a doom and gloom sense. More in a 'what do I do with the rest of my life' sense.

Right now, all I ask is for your prayers specifically for today. You know how they say it's the people closest to you that learn last? We have not shared this news with Eileen. I just couldn't talk to her about it over the phone. How does one explain to an 18 year old that we have a lot of life to live in compressed time?
MONDAY, JULY 09, 2007 09:27 AM, CDT

'Tell me, are we gonna let de-elevator bring us down
Oh, no let's go!

Let's go crazy
Let's get nuts
Look 4 the purple banana
'Til they put us in the truck, let's go!'

Thank you Prince!!!

Saw his purple majesty in concert on Saturday night. That man knows how to help a person feel like living! ....and I'm living!

It feels good to be back to almost normal energy again. Yesterday was a much needed day of rest. I nearly wore myself out the days prior.

I have never power washed a deck in my life. What made me think, less than a week after chemo, I needed to tackle that project? Oh...and staying out until 1:00 in the morning on Saturday? Rest....who needs rest? ME!

I now have the Erbitux rash. Literature states that the more rash, the better the treatment is working. If my back, chest, lips, ears and scalp are any indication, Erbitux is kicking butt. It's a very irritating. One must keep reminding oneself...NO TOUCH!.

The trip to Sloan in New York is later this week. I am anxious to meet my doctor. What valuable information will she be able to share with me regarding this beast that is attempting to get the best of me?

Back to living....
TUESDAY, JULY 03, 2007 10:22 AM, CDT

Oh....and to my cubbie buddy, Ann. I was not referring to the Laura Branigan song, Gloria. (God rest her soul.)

Yup.....spunk.
TUESDAY, JULY 03, 2007 10:10 AM, CDT

GLORIA! GLORIA! GLORIA!

I have awakened to new energy. Those red blood platelets are regenerating and my spunk is returning. Like Mary Tyler Moore, I have spunk! Thank you very much!

After extensive reading, I learned that when a body has low red blood count (RBC), oxygen does not travel through the body efficiently. (Science was not a strong subject for me.) Evidently this chemo does a number on RBC, as I was definitely not being oxygenated.

I was looking forward to this new day as I had already been feeling well enough last night to drive to Punch Pizza in Eden Prairie. For those of you in the Twin Cities area, experience Punch Pizza! www.punchpizza.com I will have to write them and let them know that they motivated my chemo escape. Yummy!

Tonight will be a fun night. Bloomington provides their fireworks display on July 3rd. We are able to enjoy them right off of our deck. Yup, rock star seats. I will be enjoying the show with the eyes of a child.

Dick doesn't know this.... OPEN INVITATION TO VIEW THE SHOW AT OUR HOUSE! Yup....living life!

Have a safe and healthy holiday. May the lights in the sky bring awe to your world.
MONDAY, JULY 02, 2007 09:36 AM, CDT



What would I do without my front garden? When we installed the ponds just a few years back, who would have known they would be used so extensively? It helps me feel like I am a part of the world...the birds, flowers...life. I spend a lot of time just sitting and enjoying.

It was a rather difficult weekend. I guess I remember feeling badly after receiving chemo last year, but this felt like a huge hit. I tried explaining to Dick how I felt. I don't think he understands how weak and frail a body can feel. I feel that I must breathe every breath. If I don't, I'm afraid that my body will not be able to make up for my lost breath and never catch up.

This morning seems to have greeted me with a bit more energy. I'm going to attempt to clean the bedding I've been resting in all weekend. Our crisp white sheets are turning a funky shade of grey....not my idea of refreshing. Online shopping might find me purchasing another set for quick changes.

Yes, I can still spend money....lol.

It looks like it could be a bit of a gloomy day here in Minnesota. That's okay, it makes one appreciate the spectacular days that much more.

My love to all of you.





SATURDAY, JUNE 30, 2007 11:14 AM, CDT

Somehow I forgot that it wasn't necessarily during the infusions that I felt crummy....it's the days following. Ugh!

I am very happy I was busy living life while carrying the pump, as my energy has now gone down to about 40%.

Evidently the acupuncture I received yesterday is working well, as my kidney's are definitely working overtime trying to rid my body of the many toxins. A nice epsom salt bath is definitely in order before Kate's birthday party this afternoon. I can't believe she's three years old already!


Dick is busily trying to keep up with household responsibilities; laundry, sweeping, kitchen duty, garden maintenance...the list goes on. He is definitely going to require a boys shooting weekend very soon. Deservedly so.

I have a three week chemo break, as my next session would be conflicting with our Sloan visit on the 13th. I will not be infused again until the 18th with the continuous pump until the 20th.

We are heading out to Sloan on the 12th and returning on the 15th. Hopefully my energy level will be intact and we will be able to enjoy New York City close to the date of our anniversary.

It's a beautiful Minnesota weekend. I don't know why this nasty disease continues to hit me the most inappropriate time of the year. I should be out working in my garden and enjoying the bounty of my hard work. Instead, I've been told to live a vampires existence and stay out of the sun, as my skin is highly sensitive to the sun with the drugs.

Go out and enjoy a bit of the beauty this day has brought...appreciate yet another gift.
THURSDAY, JUNE 28, 2007 08:23 AM, CDT

So far so good! I'm being pumped with chemo and there have been no adverse reactions. YES!

It was a very long day yesterday. We began at the Oncologist's office at 12:20 p.m. and ended at 7:15 p.m. A quick dinner at PF Chang and I was ready for bed and crashed once we arrived home.

The most interesting experience of the day was the first infusion in my port. They forced Benedryl through my body. Let's talk about a cheap high! The high lasted a few minutes and then I was off to dream land.

The Benedryl was used to stave off any allergic reactions I might have with the three various chemo infusions over the next several hours. I don't even remember them starting the Erbitux. I was too drugged to care.

Good news...no adverse reactions. Dick tells me he couldn't help but look over at me every 15 seconds to make sure I was still breathing. One of the side effects is difficulty breathing and heart failure.

I feel great this morning. Dick caught me singing to a commercial. I haven't been doing much of that lately. I think it took us both by surprise.

My chemo pack continues to pump my 5-FU until Friday at about 5:30. It's nice to be able to sleep in my own bed while receiving chemo. It just makes gentle mechanical noises every now and then. Just sling it over my shoulder and away we go!

I pray I continue to feel this well. Acupuncture has been scheduled for Friday to assist in any nausea or other discomfort. I'm attempting to stay ahead of any ill effects.

Enjoy your day!!! Thank you for your prayers.
TUESDAY, JUNE 26, 2007 09:46 AM, CDT

I'm home and resting very comfortably after the port procedure.

The skilled hands of Dr. Jaque had the port implanted in twenty minutes without incident. What a relief! Geez...I was such a baby going into this.

I've been concerned about the chemo technicians using the port so soon, knowing it will be tender for a couple of days.
Dr. Jaque knew what I was thinking without my speaking a word. He offered to have a needle line left in for ease. What a good man!

Another note for future reference. This procedure is very simple. Pain level is minimal.

Thank you all of your positive thoughts. You carried me through this. I could feel you there right along side of me. My blood pressure going into this was 94/72. Heart rate was 64. Yup....you were holding my hand.

I'll be resting today. The rest of you....enjoy and appreciate the gift of today.
SUNDAY, JUNE 24, 2007 10:02 PM, CDT

I felt very close to my old self this weekend. I was able to spend a little time in the garden, work around the house and enjoy a bit of summer. I'm tired, but it's a summer weekend kind of tired. It's wonderful!!!

We've been busy. Friday night Corbin had her graduation. I am so proud of her. She is majoring in corporate finance and has worked very hard to achieve her goal. We had a small celebration at Ciao Bella after the ceremony. The memories Eileen and Corbin shared with us that evening were hilarious. It was fun listening to their tales from their younger years. What a gift to be able to giggle with the two of them.

Saturday greeted us with another evening of good company and laughter. It's amazing how the energy of other people can help ease ones burdens. Thank you for taking me away for a bit. You helped rejuvenate my spirit.

My mind is in a much better place. I have cleaned out my emotional closet and I'm ready to begin the next phase of this journey. I feel strong and whole.

These upcoming weeks....well, months, will be about one day at a time. Isn't that what it's about any way? Don't we all live for just one more day?
FRIDAY, JUNE 22, 2007 09:49 AM, CDT

I've been digging deep. Yesterday I had many light bulb moments. I was getting angry at myself, as I was going through so many emotions. I didn't quite know how to deal with it. Recognition makes for understanding and acceptance.

I feel weak. Vulnerable would be the correct word. I am having to rely on others. That is very difficult, as I am a person that gives and am happiest when I do for others. I am so concerned about how I will repay these 'debts' that I feel are accumulating.

Guilt. Wow...that's a biggy. The burden this beast has brought to the people that I love. I am rocking their world.....but not that kind of 'rockin' their world', if you know what I mean. Personal life plans have been disrupted.

I am angry. This disease is insidious and unrelenting. Last time I didn't question why this was happening. I viewed it as an experience of growth. Well, now I'm questioning, 'why us'?

When I went through this last year, it was somewhat of a new adventure. I was whisked from the emergency room to being admitted into the hospital. Testing and treatments followed with a goal in the end that I thought had been achieved. It taught me I had strong character. It was a great learning experience and a relationship builder. Enough character building, okay?

Fear. My initial cancer brought worry and concern. I thought I was scared. Last years fear doesn't hold a candle to this one.

I don't have all of the answers. I'm still working on that. With mindful recognition, I can now go forward with eyes open. One thing I do know, I'm not living through this challenge alone. I also know that we are all learning, one emotion at a time.
WEDNESDAY, JUNE 20, 2007 02:29 PM, CDT

Whew...got through that dark cloud. I just needed twenty-four hours.

With so many decisions to be made, I think it just took its toll. I'm inching back and will be ready and armed come next Wednesday when I begin chemo.

Many of you wrote and expressed your support. I know that you are there. I am so lucky to be surrounded by so many wonderful people. Thank you from the bottom of my heart.

There are just times I need to dig deep down inside of myself and unclutter. That is not always easy to do, as it requires no longer escaping. Reality bites at times, doesn't it?

I've also learned I MUST stay away from other cancer blogs. Naughty, naughty me. That's a quick trip to a very frightening place. I'm just not going to go there.

Dick is busily finishing what will soon be my place of comfort. The walls are painted. Just a few finishing touches and I will be ready to begin this new journey.

I love you all.
TUESDAY, JUNE 19, 2007 10:00 AM, CDT

Life continues....

I had a rather difficult day yesterday. It's like reality is hitting and I don't know what to do. Most of the time I am positive about the situation. I realize I actually fool myself.

The reality is that I feel pain, physically and emotionally. Simple tasks like bending down or stretching to reach up still hurt. I realize that is not going to change, as that is my cancer pressing.

I am easily out of breath. I thought that would improve, but every time I speak with Dr. Dang from Sloan, I realize she is telling me that is not going to get better. That is what I am living with right now. She is waiting for me to tell her it's getting worse.

My oncologist, Sloan and I have all made a decision to go forward with my chemo in Minneapolis. I will then make visits to Sloan for diagnostics; scans, etc. I will be starting the Erbitux and Folfox regime next week.

I am scheduled to have my port surgery next Tuesday morning. I have yet to learn what day exactly chemo will begin, as we are awaiting approval from our insurance company.

It's my understanding this Erbitux is quite expensive. I am grateful I live in the United States, as Canada will not allow it in their health care system. I was reading in a fellow cancer patients blog that it costs about $34,000 month. I guess if you are Canadian and you have a disease like this, you no longer matter. Very sad statement.

Today will be a better day. I know that yesterday was difficult for Dick. I was numb and had little expression. By the time we got to bed he asked me to rate my day from zero to ten. He just didn't know how else to approach me and attempt to get into my head. Well, then the flood gates opened. God bless the caregivers.

Lift my spirits Lord and give me strength to meet this challenge.
SATURDAY, JUNE 16, 2007 10:27 AM, CDT

We met with my Oncologist yesterday. What we learned is that I am a very special person Actually, a rarity. He advised us that there were probably less than 400 people in the world that have had my metastatic tumor. There is no research to indicate what the best course of action would be.

He provided us with four chemotherapy options. The one he recommended most was Erbitux. It's the latest and greatest for treating metastatic colorectal cancer. http://www.emaxhealth.com/100/11136.html The company that created this, Imclone Systems Incorporated, is actually the company that got Martha Stewart in trouble and sent her to jail. Martha's a smart cookie. I think she made the right investment.

I will be in contact with Dr. Dang from Sloan this weekend to discuss my oncologist's suggestion. I am hoping that since I am such a rarity to science, this will pique Sloan's interest and they will sign me right up. The specialist that Dr. Dang is suggesting take my case is Dr. Eileen O'Reilly with Sloan. She is heavily involved in research in my specific type of cancer. Time will tell.

When I mentioned surgery to my oncologist he was very confused. Evidently, he had not been privy to the conversation my two surgeons had earlier this week. He's against it. Would rather just treat me with chemo. He is also completely against radiation, as he is sure it will completely kill my lung and leave me with just one. He did suggest I get a second or third opinion. Well, we're working on that with Sloan.

He has suggested I have surgery for my port this upcoming week. This will allow me time to heal for whatever course comes my way. The idea of a port turns my stomach. I've not felt well all morning thinking about it. I'll get over it. http://en.wikipedia.org/wiki/Port-a-Cath

We're picking out paint for the bedroom today. Even if I do end up at Sloan, it will most likely be an every two week regime, wherein I will be flying in for a couple of days and returning back to Minneapolis. It seems I'll be spending a fair amount of time feeling like crap in my bedroom. We're planning ahead and creating a calming and healing atmosphere.