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.
SATURDAY, JUNE 16, 2007 09:06 AM, CDT

SONNET TO MORNING

Let me unwrap the gift of this new day
And view its contents as an innocent child
Accept the world: with eyes that see the way
To sun beyond dark clouds, where skies are mild;
With voice that lifts in prayer, as birds praise dawn;
With hands that touch each miracle, in aw
Of budding leaves or flowers on a lawn
Or furry friends with hoof and horn and paw.
Lead me along a path where I will find
In all the precious hours that stretch before,
The chance to help, to listen, to be kind;
To heal the wounds that make the world heartsore.
Oh, let me fill each second so that I
May greet the day with an appreciative eye.

Sheila Forsyth
FRIDAY, JUNE 15, 2007 09:10 AM, CDT

There has been a flurry of activity regarding Memorial Sloan-Kettering. I was on the phone with Dr. Dang's offices a few times yesterday and this morning.

The amount of paperwork they require blows my mind. They are not able to set a firm date until they receive every bit required on their checklist.

Since I have a personal referral, I am tentatively scheduled to head out to 'MSKCC' July 13 (Dad's birthday). They are attempting to accommodate an earlier date. My hope is that happens and soon.

I recognize how fast growing this beast is. It will be very difficult on my emotional state to wait that long to begin treatment.

But, it sounds like I'm in and the best will be helping me with my fight for life.

I will update you further once I receive more information.

Thank you for your prayers. I know that all of you have had a large hand in this rather large accomplishment.
THURSDAY, JUNE 14, 2007 08:22 AM, CDT

People often ask me how I make it through a day? What keeps me so strong? What helps ease this mental challenge I currently carry?

That is such an easy answer. You. All of you caring and wonderful people.

Take for instance, the guestbook entry from Connie and her dog Courage. What a phenomenal woman. Here's the part that will amaze you. Connie is Dick's ex-wife Jane's friend.

Last evening I had a small soiree' at my home. What I called the 'pre-treatment party'. It was with good friends that I was recently working with. I wish I could describe the love and true warmth I felt as I was speaking with each of them.

I receive notes and communications from people I went to grade school and high school with. Just last week, the wife of my first boyfriend, Julio. The compassion she shared with me, recognizing that we are both women, a wife and mother, and how devastating a disease can be in all of those roles.

My family. Before cancer, I didn't recognize how much strength I derive from my family. The hardship they are willing to bear....for me.

Cancer puts everything in perspective, doesn't it? We quickly learn petty differences really do not matter. Life is so much bigger than that.

When you read this, please take the time to recognize the people that help make your day. Don't be afraid to share your appreciation.

Every day is a gift.
TUESDAY, JUNE 12, 2007 09:49 PM, CDT

The weather is Minnesota is spectacular! What a wonderful time of year. My garden is in full bloom. We're able to enjoy dinner and conversation on the deck. I am able to sit outside and listen to the fountains in the ponds we installed just a few years back. What more could one ask for?

It's been a busy day. I was at the hospital collecting medical records. I am being referred to Memorial Sloan-Kettering Cancer Center for treatment. They need all of the detail to make the decision to accept me.

I am blessed, as I have an 'in' to get into this world renowned facility. I may have the opportunity to meet and be treated by the best lung surgeon in the world, as it is likely I will require additional surgery.

I just, by chance, ran into my colorectal surgeon today while roaming the halls of the hospital. What a wonderful and caring man (another story).

What he shared with me is that he and my thoracic surgeon had been chatting about me this morning. They both came to the conclusion I need radical surgery. Remove a good chunk of my lung as well as several ribs. This all needs to be completed before I am able to receive chemo. They both agreed it will take a special surgeon.

So, as I enjoy this amazing day and acknowledge this wonderful gift that has been given to me, I still want.

If I could please ask for prayers and positive intentions. That I will be given the opportunity to receive the skilled and talented hands that will give me the opportunity to enjoy many more years....of days, just like this.
FRIDAY, JUNE 08, 2007 09:12 AM, CDT

It's a new day!!! I have so much more energy and my pain has subsided significantly.

It feels so good to be able to pick up around the house and be out and watering my plants, etc. I think I might even be able to get a quick pedicure!!!!

We will be joining friends at their Brainerd Lakes area cabin for the weekend. It will be good for all involved to get away for a bit and escape reality.

Everyone have a great weekend. Enjoy every day that is given to you. It is a precious gift.

Love to you all.
THURSDAY, JUNE 07, 2007 05:28 PM, CDT

I would like to apologize for not being able to respond to your kind letters and communications these past few days. I believe our internet is up and running for good. Thank you for your patience.

I am in a better state of mind. Dear friends and family are providing me with promising stories of others that have had this terrible disease and beat it.

Healing from surgery is taking much longer than I anticipated. I am not able to push myself with the simple pleasure of walking, as it causes me to be out of breath. When I sit for too long, my sutures scream to be relieved. Catch-22 at it's best game.

I have nothing further to tell you about treatment. Until I have healed very little progress will be made on that front. Second opinions are being considered. Dick is working out all of those details for me.

Eileen went out and purchased an ice cream maker today. We thought making ice cream would be a fun way to spend time together. Normally we have 'Target Tuesdays', and other typical mother/daughter shopping adventures. With limited mobility right now this should be fun.

Speaking of ice cream, Dugan, would you like to try a little Oreo? Yeah....you know what I mean.

Love you all.
TUESDAY, JUNE 05, 2007 09:44 PM, CDT

My head hurts. There are too many things to think about. So many of them are of the unknown.

I spoke with my Oncologist this morning. I will not see him until Friday the 15th. This will give me time to heal from surgery. Seems to me I can heal and talk about treatments at the same time! Yes, I'm a bit frustrated by that.

He wants to meet with me late in the day after most of the patients have left the office. This will give us the opportunity to focus on my fight for life. He said something about monoclonal antibodies, Cisplatin and my old 5FU chemo regime.

As much research I do myself, none of it quite comes together in my head. Could it be the oxycodone effecting my clear thinking? Nah....I'm thinking this is some pretty heavy doo-doo that I'm reading about.

I'm concerned. He didn't say anything about radiation. What am I supposed to do with this growth on the wall of my lung that the thoracic surgeon wouldn't remove?

I believe I am more afraid than I have ever been in my life. I've never been a runner, let alone one training for a marathon. I feel like I'm running in place.

Please keep those prayers coming. Old friends and colleagues may be hearing from me. I'm sensing desperation.
MONDAY, JUNE 04, 2007 02:12 PM, CDT

Dr. Jaques has been in and removed my chest tube. For future reference, should any of you require one, removal is no big deal.

My Oncologist is out of the office today. I will have to meet with him later this week to discuss my treatment plan.

Rumor has it that there have been worker bee's at my house installing the new Tigerwood flooring in our bedroom. There have also been garden assistants making my garden more beautiful (it has been a bit neglected this year).

Thank you so much for your help. The work done around the house will certainly assist in my convalesing. I hope you know how much you are appreciated.

Further updates will be forthcoming. There is a new treatment by the name of CyberKnife radiology that sounds very promising. I will have to do my research.
http://www.stjosephs-stpaul.org/CyberKnife/index.cfm
SUNDAY, JUNE 03, 2007 01:03 PM, CDT

Day two is much easier than the first day! Physically and mentally.

I've been up walking twice today, sat in the chair and had breakfast and been to the bathroom a few times. Huge leaps from yesterday.

My chest tube will remain until tomorrow. Dr. Jacques believes I should be well enough to go home by then.

This doctor makes his patients work hard! He's one tough but very good doctor.

My cancer is squamous cell. same as the last. Don't know that much more until I see my Oncologist tomorrow.

I know that I have missed a few phone calls. I was either on my way out for a walk or in the potty. The best way to reach me will be my cell phone. Text messaging is a great form of communication as well.

I can feel your love and support. I so, so appreciate it.
SATURDAY, JUNE 02, 2007 11:41 AM, CDT

Hello Everyone - This is Kathy's husband, Dick, just returned from the hospital where Kath had her surgery this morning. The surgery went well, only took 45 minutes. The outcome is not what either of us had hoped for. The 1/2 inch nodule in her right lung was removed and found to be cancerous. She also has a thickening of the wall of her lung in the same area, which was also found to contain cancer. This they did not remove as it is apparently quite a radical procedure. I was only able to speak to her surgeon so far. It appears she will require chemo, as they are afraid she has the bugs floating around in her looking for new homes and this will be the only way to treat for those. As to what they did not remove it will also potentially require radiation therapy.

Please keep her in your thoughts and prayers as she is taking this pretty hard, knowing what is ahead of her.
FRIDAY, JUNE 01, 2007 09:44 AM, CDT

I know the questions of the unknown are of great concern.

I have done my own research, and I believe this will answer many questions.

Please keep this in mind when reading. 'In one case, we found a benign lesion, and this patient was excluded from the analysis.'

Now....wouldn't that be something if all of this would be just silly skepticism and fear.

Here ya go:

http://www.chestjournal.org/cgi/content/full/115/5/1441

You will need to page down a bit to get to the article.

Busy day ahead. Pre-op appointment and having fun with friends on their boat this evening. I wil be enjoying a margarita or two.

Milo, Margaret and Vickie....you know which ones I mean.