Kathy Bienapfl

Kathy - 11/26/09

2009-11-26T16:27:00.002-06:00

For all those following Kathy's blog. Today, Thanksgiving Day, 2009, at 10:37 this morning, Kathy passed away quickly and hopefully painlessly. To all those who have followed her over the past 3 + years I hope her words of courage, kindness and determination to beat this hellish cancer were of help to you. Your words, responses and stories were of a great help to her in keeping up the fight.
She is someone who will never be forgotten.

Next Steps

2009-05-20T13:34:00.000-05:00

These past days have been very emotional. I found I used my hospital stay to cocoon myself and hide from the reality of my world. Now that I am home, I have had to face some rather difficult decisions.

Dick has been after me to make necessary phone calls. He has the heart wrenching job of having to push me through and return me to our reality. He basically begged me to talk to Doctor Chris at CTCA. I followed his wishes and did so today.

Dr. Chris is generally a very upbeat, optimistic and hopeful practitioner. Today I heard fear in his voice. In few words, he expressed to me that the cancer was winning over. If we were going to do anything proactively, we would have to do it within the next two weeks. Personally, I was really hoping to recover from my most recent surgery before having to chase the next set of procedures. From what I am hearing, I do not have time for that.

The team at CTCA will not know exactly what I will be facing until I get there. From what Chris has shared with me, they seem to feel they can remove the tumors that are growing in my pelvic area. With that, they will need to provide another form of radiation to the area that branching out into my right leg.

Where did this all come from? How did this all happen so quickly? I was living so lightly and had a sense of freedom from this beast. Now all I can do is think of the torturous ending it has awaiting me. I try to hide my tears from my loving and ever vigilant daughter, Eileen. She is constantly at my side and sees the pain and fear growing within my eyes. I don't know who needs more support right now, her or I?

This is so unfair for a twenty year old to experience. She needs her mommy. I must overcome. I will fight this next battle.

I wish there we better news

2009-05-18T11:29:00.000-05:00

My surgery has taken place and I have returned to the comforts of my home. I am doing as well as can be expected. There is still a lot of time in bed and very little activity. Right now, I am healing, healing, healing.

The surgery was a success on one part. Unfortunately, it did not do what we hoped we would accomplish when we went into this phase of the journey. The hope was that if we created a colostomy, the doctors would be able to remove the scar tissue and newest tumor from my anal tract. They were both causing me excruciating pain. The goal was to alleviate that pain and provide a fuller life. While they were in there, they planned to remove the balance of my anal tract and rectum. Remove any ability for this damned evil squamous cell to spread.

The morning after my surgery, Dr. Nemer entered my room and explained to me that they basically took a look at the situation and closed me up. They did provide the colostomy to alleviate the pressure that had been building from my colon and then onto the scar tissue. Unfortunately, they found that the tumor had grown much more than they had anticipated. Not only did they find much more tumor in the anal tract, but also found more spreading down through my vagina and spreading with little fingers into the upper part of my right leg. They decided it would be best for me if they did not remove any of the tumor, as they felt if they did not get it all, the cells that were left behind would spin out of control throughout my body. This surgery was much bigger than they ever anticipated.

You can only imagine the disappointment. I did not want to talk about. My dear husband wanted to get on the phone and start working on the next series of surgeries and treatments in this journey. I am so worn out...I just can't do. All I want to do is silently cry inside and heal, heal, heal.

I asked Dr. Nemer what my next set of options would be. He really did not have answers. He suggested blocks to alleviate the pain I continue to endure from the tumors. He did not have the answers as to the cancer that is spreading down into my leg. He stated that eventually I would lose circulation to the area and most likely require amputation of that leg. Once I heard that, I really wanted to just hide and not deal with what had been dealt me. Basically, he had no answers.

Dick has been communicating with our dear, Dr. Chris, at Cancer Treatment Centers of America. I have not been able to pick up the phone and speak with him myself. I know that I will not be able to speak the words that need to be spoken. I know that I will only be able to sob tears....as I am doing now. From what I can tell, from Dick's conversations, CTCA's hope is to be able to completely remove the tumored sites in the pelvic region and then once again provide radiation treatment to the leg area.

I just keep asking for time to heal. I am not a super hero. My body has been through so much. I know that this is a fast growing cancer. I know I need to get on top of this and become involved in the planning of the next step of treatment. I just know that the next step will require more time away from home. More time away from my dear family. More time away from my comforts. At what point does one say enough already?

Generally, I do not ask for speific prayers. At this point, it is very obvious what I need from all of my wonderful supporters. My doctors need vision to see what will assist me in complete healing. My family needs strength to accept what each day brings. Personally, I need the feeling of angels surrounding me, as I feel so alone and lost right now.

Thank you for lifting me through surgery. I was a star patient for all of the nurses and doctors at Fairview Southdale. I know that you were there, providing the support and strength that I needed, expecially those first challenging days.

The Ride Continues

2009-05-05T22:25:00.001-05:00

It has been some time since I have updated my blog. I have been putting it off. I feel that what I will be posting will be letting so many people down. Last I wrote, I was given a six month reprieve from scans and tests.

Shortly after my clear scans, I began to feel the same pain I was experiencing that brought me to the hospital July 22, 2006. A little voice was whispering in my ear to make an appointment with my gastro surgeon. That was Thursday, March 19. At that appointment it was confirmed that the cancer that I fought close to three years ago had returned to its original site. Not near the original site. On the original site...right on top of the scar tissue. I have been told that this is very unusual. Of course it is!

From there I met with the surgeon at Cancer Treatment Centers of America in Illinois to get a second opinion. The doctor at CTCA concurred with Dr. Nemer. I required a colostomy. He also advised that if I did not have this surgery, I would die of one of the most terrible and painful deaths known in the cancer world.

No problem. I have a trip planned to Mexico. Decisions will be made upon my return April 12. So...off to Mexico I go. We are enjoying our trip and putting the cares of the world out of our minds for a few days. Unfortunately, that did not last long. While in a foreign country, I developed a vaginal fistula. (If you do not know what a fistula is, Google it, I'm not going into detail.) Off to a Mexican emergency room I go. I just can't seem to get a break!

You may ask, how the heck does a woman develop one of these? Pretty simple. Go through lots of pelvic radiation. The fallout (literally) from treatment in 2006. It is not painful. It causes inconveniences in my life....and I wear more perfume than I normally would.

Back in Minnesota, I once again spoke with Dr. Nemer. He suggested I have an MRI. He wants to make sure there are not other pesky cancer cells eating away at anything else in my abdomen; liver, pancreas, bladder, etc.. Sure enough, the results come back. It looks like the cancer has spread to my bladder. I believe that was about the time Dick and I hit the wall.

One thing I'm leaving out... My daughter, Eileen, broke her hand while I was in Mexico. She fell down stairs and caught herself with her dominant hand. She broke the most difficult bone there is to break in the body. During all of this, she also requires surgery. Yes...this is the point where we all said NO MORE!

The urologist comes into the scene now. He needs to see if there is indeed cancer in my bladder. If that is the case, on top of the colostomy, I will also require surgery on my bladder and redirect my urinary tract. He was very kind. Dr. Utz explained that what he saw on the MRI did not look promising for me. During my exam he prayed with me. He found nothing. What was showing on the MRI is possibly scar tissue. I love it when doctors give me big hugs. He cried thankful tears with me.

Whew...let's get this surgery scheduled and get the show on the road!!!! Oh, how I wish it were that easy. On April 23, Dr. Nemer comes back into the picture. He wants to have a lenghty conversation with both Dick and me...not just me. He wants Dick to understand that this is a life changing surgery. He also explains to both of us that he is not sure if the colostomy is feasible. He needs to examine me one more time to make sure my various levels of skin in the pelvic area have not melded together from the radiation. (Are you learning with me? Radiation causes some pretty bad stuff a few years down the road!)

Upon exam, he is very pleased to learn that my 'plains' are separate and in good condition. The surgery is now a go! Unfortunately, it will take about three weeks for the 'team' to get scheduled. Evidently there are several specialists involved and it is very extensive. The scheduled date is this Friday, May 8th.

I have felt so selfish asking for constant prayers and support in the past. I just could not write prior to this. I feel weak and vulnerable. This update is forced. I have a minimum of a four to six hour surgery awaiting me this Friday. These last weeks have depleted me. I need your help. We all need your help. This has been very difficult for my family.

So, once again, I humbly ask for your prayers and support. You have lifted me with so much wonderful energy and love in the past. Anything you can send my way at around 3:30 p.m. Friday would be more than appreciated.

With deep love and appreciation,
Kathy

Great News, Guys!

2009-02-11T10:37:00.000-06:00

Dr. Eden, my Radiologist, walked into the exam room with a huge smile on his face. His words were "great news, guys!" I waited a moment. Okay...when will the 'but' come into this conversation.

From there he went on to explain that the most recent series of treatments worked. The small tumor in my left lung has been obliterated. The scan that would normally show multiple tumors in my right lung....gone! There is one pesky spot that appears to be an encapsulated tumor. The size has not changed in three months. They believe it could possibly be scar tissue at this point.

'See you in six months! You're doing well.. If the six month scans show no progress, we will not need to see you for a year!' A reprieve...a HUGE reprieve!!!

I gave him a hug. He said, "I'll take the hug...but thank the Lord."

From there we went on the see my Oncologist, Dr. Levin. My blood work shows that I am 'normal'. No anemia. My white blood counts are within healthy range. My liver and kidneys are functioning normally. Isn't it amazing what a body can go through?

Dick and I headed to the elevators and I started the happy dance. Is this for real? I felt giddy. He reminded me that I will be able to work in my garden for the first time in three summers!

I awoke this morning with the same fear that has been plaguing me every morning for some time now. I realize that it will take some time for this amazing news to sink in. Maybe I am a little worn from all that I have been through. I have survived a difficult battle.

My husband, Dick, has been an amazing supporter in this fight. He has been right by my side through all of it. He made a choice to walk hand-in-hand with me through the good and bad as well. Thank you, Dick. You are deeply loved and greatly appreciated.

How do I thank all of you for the amazing support your have provided? Your prayers were heard and answered. We all know it is all in His hands...but you must have been sending some pretty compelling requests. I will be forever indebted to you. Thank you.

I also want to thank the amazing staff at Cancer Treatment Centers of America. To think, a year ago April, I was told by another large medical institution to go home and make peace with myself. CTCA would not allow those words to be echoed. They have a huge arsenal and were ready to reload and take it up to the next level, if necessary. Dr. Chris, Dr. Levin and Dr. Eden....you know how I feel about you and the superb care you have provided

This journey is not over. I might lay low for a bit of time. It's been some time since I have been able to breathe in fresh air. I need to figure out what I am going to do with the rest of my life.

I love you....all of you.

Here We Go Again

2009-02-04T12:28:00.002-06:00

It has been some time since I have updated my blog. All of the holidays passed by so quickly! Where does time go?

It has been busy around here since I returned home from treatment in Illinois mid-December. Somehow I had the energy to complete Christmas shopping, decorate the house, prepare many meals....It was great. The New Year found me down for the count with the flu. That was quite a setback....yuck.

Before I knew it, Dick and I were flying to Sacramento for the grand opening of his newest project, Red Hawk. It is a beautiful facility and I am very proud of him. We had a great time celebrating his huge accomplishment.

Sacramento started the beginning of a two week long trip. Following Sacramento we joined our friends in their home in the Palm Springs area. Being surrounded with friends has been a blessing, as I have been filled with anxiety knowing that my next round of testing is fast approaching. I have not been handling it well. Thank goodness for warm weather distractions.

My energy levels are good. I have been able to golf, swim and enjoy more than one margarita. I wish my stamina were better, but when I look back at what I have experienced, I think I am doing pretty darn good. Some days I wonder if I feel the way I do because of the war that I have been battling or if is it because I am in my 50th year?

Dick and I leave for Cancer Treatment Centers of America on Sunday. I have scans and other tests scheduled on Monday, February 9th. The results will be available on Tuesday the 10th. My belly is full of butterflies and doing flip flops already. I do not recall ever being so apprehensive. The thought of having to be away from my family for another six weeks of treatment...well, as you can imagine, it's difficult.

On one hand I feel very good about what my results may be. It was just that one little tumor they needed to treat last time...and we know the treatment works! I keep reminding myself that I need to be positive. I am so lucky to be here today. When I was told by Mayo last April that there was nothing more that could be done, I honestly did not think I would be here to ring in the new year. Well, I am here and kicking! I think I am just plain exhausted from fighting. It seems it is all encompassing. I want to be able to do more than fight a disease. At times I feel so selfish. I feel like all I do is take.

So....once again it is a waiting game. Next week will tell us if we have a reprieve or if we will continue the battle. I will keep you all updated as soon as I know the results.

As always, I am so thankful for your continued prayers and support. You continue to lift me and provide energy to fight and appreciate all that surrounds me.

Patience

2008-11-20T10:00:00.001-06:00

I am restless!! I sit in what I refer to as my apartment with a cleaning service and pass my time. I once thought having my own little place to escape would be something that would take me away from daily stresses. I realize now that what I once thought were daily stresses are just a part of life that I now miss.

I have four and a half weeks of treatment remaining. Hawthorn Suites is very accommodating, but I miss the bark of my dog, Bert, Dick's nightly back rubs and the young energy Eileen brings to our home.

Cancer Treatment Centers of America is located in Zion, Illinois. It is not a very convenient location. It is located smack dab between Chicago and Milwaukee along Lake Michigan. It helps me appreciate where I live in Minnesota. To get to a mall or a decent restaurant while staying in Zion, it requires at least a half hour drive. This is difficult, as I am accustomed to great food and entertainment ten minutes from home. Here, I think twice just taking off and going out, as it takes energy to get from point A to point B here in Illinois.

Treatments are going well. They are not scheduled until evenings as they have so many patients scheduled each day. Some nights I do not leave the radiation center until 9:00 p.m. This makes evening socializing with friends and family difficult. I return to my room and crawl into bed and sleep any sign of depleted energy away. With that, I am able to wake in the mornings with good energy and the ability to be out in the world. Late mornings find me exercising at the gym CTCA provides for their patients. It is my afternoons that find me stir crazy and looking for things to do.

The staff at CTCA continues to impress me. Their philosophy is that all members of this amazing organization treat all patients the way they would want their mothers treated. I must say, there are some very lucky mothers out there, as the staff shows so much respect for each and every patient.

CTCA takes care of everything from free breakfast, lunch and dinner to limousine service to and from the airport. They provide the feeling of security as they go above and beyond the call. I just learned that my airline tickets to and from home as well as mileage from my driving trips are reimbursed through insurance. CTCA does not want its patients to be concerned about the small details. They take care of that for you.

They can only do so much. Accepting the quiet that faces me on a daily basis is my part of treatment. I am once again learning the next level of patience. Appointments run late. Afternoons are long and lonelines sets in. In the end, I know this will be a small portion of my future and this time away from home will be well worth the sacrifices.

pa⋅tience /ˈpeɪʃəns/ Show Spelled Pronunciation [pey-shuhns]
–noun
quiet, steady perseverance; even-tempered care; diligence: to work with patience.

Peace and blessings to all of you.

The Results Are In

2008-10-30T10:30:00.001-05:00

We have returned from Illinois. We received the results of my latest CT scan yesterday morning. I have good new and I have bad news.

The good news is the recent treatment I received worked. All of the tumors in my right lung have reduced significantly or have been completely obliterated. Dr. Eden is very pleased with the outcome. All of those difficult weeks away from home were indeed worth the hardship.

Now for the bad news. The celebration in the examination room was short lived as Dr. Eden shared with me that they have found new cancer growth in my left lung. It is not very large. It is again in the pleura lining. The report states that it is a tiny growth. Dr. Eden explained it is about the size of a nickle. A single fast growing tumor.

Am I numb? Yes. The thought of cancer migrating to another area frightens the heck out of me and I find myself in a bit of a funk. I was not expecting this newest blow.

On the other hand, we know that the Tomotherapy worked. I just need to go back and get this one new growth blasted. Unfortunately, that means another five weeks away from home, family and friends. Just as I was feeling like a healthy person and living a full life with energy, I have been told that I need to start over again...smack in the middle of the upcoming Holiday season.

I return to Zion this upcoming Monday for treatment measurements and planning. Then I will return Monday, November 10th for five weeks of treatment. Doesn't it seem strange that I need to return for twenty-three treatment sessions for just one tumor when I required twenty-eight sessions for multiple tumors?

When all is said, I believe the news is eighty percent good and twenty percent not so good. On a positive note, we know that the Tomotherapy works and will blast this one trouble maker. As our good friends brought to my attention last evening...imagine what the news would have been like if they told me the cancer had spread and the tomotherapy did not work? All is not bad...just a little piece of disappointment thrown in the mix.

Speaking of our good friends; Sue & Bill's son, Chad, has been in the hospital for close to two weeks now. His body has been ravaged by an aggressive strain of Pneumoccocus. The family has been on quite a roller coaster ride. Chad has been in a chemically induced coma. His body has been having a terrible time fighting this. At one point, all of his organs were shutting down. He has pulled through that...but it will be a long road to recovery.

If you have any extra prayers in you, please send out positive thoughts Chad's direction. He's hovering between life and the dark world of a coma.

We are once again reminded that life should be lived one day at a time. We never know what will be greeting us tomorrow.

Blessings and love to all of you.

Autumn Spelndor

2008-10-14T09:49:00.001-05:00

Autumnal colors are gracing our landscape here in Minnesota. We have been taking in the beauty and recognizing this annual gift . This is my favorite time of year. The colors seem to speak to me. In turn I rejoice in their splendor.

We returned home from Illinois one month ago this week. I have been gaining strength daily. Still, some days seem to be more energized than others. I find that I am not as patient with myself as I know I should be. I can hear Dr. Chris saying "Geez, give yourself a break. Your body has been through hell and back." I know this mentally...but I still find I want to live each day more fully.

I joined a fitness club last week. It is too difficult to sit and wait for my energy and strength to return. My hope is that by working out on a regular basis, this will speed up my body's sluggish feel. So...if there are any friends that belong to Lifetime Athletic, please let me know if you are looking for a workout buddy.

Being home is a delight. Dick and I have both been busy working on projects and organization. My house is once again clean after a summer of neglect. Dick's special garage project is making great progress. We both have a new found appreciation for our time together and the simplicities of life.

One thing that I have been doing as a personal treat is spending evenings enjoying a bubble bath with my iPod playing the amazing music of Andrea Bocelli. I have decided I can do such things now. I never allowed myself to enjoy this simple pleasure before. While sitting in the bath I am able to review my day and appreciate all of the wonderful works from above that surround me.

Take the time to enjoy what you view as your own selfish indulgence. Don't wait for 'some day'. Breathe in and acknowledge the special gifts that have been provided to you in this day and every day.

Home Again

2008-09-30T10:08:00.001-05:00

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

We returned from CTCA two weeks ago today. It is hard to believe my last treatment was just two weeks ago. My energy is slowly returning and I am becoming familiar with routines at home.

Looking back, it is rather odd to think I was away eleven out of twelve weeks. I was away from home for what amounts to a season. It was not an easy time for me. At the same time it was an amazing learning experience. I have come to have an even greater appreciation for what is important; family and friends. They helped provide energy and reminded me of the hope that was right around the corner. I also gained appreciation for the more simple things of home. My bed, the familiar and beautiful neighborhood in which I live, restaurants that are not fast food and the snuggle time with my dog, Bert.

When we left Illinois, I made the decision that my last treatment was my last day of cancer. I feel very positive about the treatment outcome. I wake each morning feeling like a 'normal' person. I have shared with Dick that I do not quite know what to do with myself. It is a rather foreign feeling....normal. Give me some time, I will get the hang of it.

I guess what is so strange is that I feel I have a full life in front of me. I am so afraid I am going to fall back into old thoughts and life patterns. My hope is to continue to wake each morning with great appreciation for all of the big and small things that surround me. I also feel I need to do something with what I have learned through this journey. I need to give back, as I have received so much.

Due to the swelling and inflammation in my lung from treatment, we will be returning to CTCA at the end of October for a CT scan. We will learn at that time if we need to proceed with any additional treatment. As I stated above, we all feel very good about my outcome. I will not allow myself to live as if my time here is limited. I have been doing that for far too long.

I want to thank all of the wonderful staff at Cancer Treatment Centers of America for all of their caring and support. A truly empathetic and nurturing environment has been created and instilled with this healing organization.

To all of my caring supporters, thank you for sending your healing thoughts and prayers of high intention. It was all of you that assisted me in greeting each day and having the ability to proceed with a rather difficult treatment experience.

A Dark Hole

2008-09-07T20:46:00.001-05:00

Honestly, I do not know how else to begin this entry other than to say it up front and talk about it. I hit the proverbial wall. I wouldn't say I had a breakdown, but I did indeed have an 'episode'. Whatever happened, it took over the strong, upbeat and positive person that has always had the ability to rally.

It has been difficult being away from my family & friends and the comforts of my own home these past months. The short bits of time I have been home, I was fighting pain. The discomfort did not allow me to be fully present and enjoy spending time with family and friends, as I was always distracted.

Poor Dick called me to say good-morning two weeks ago Friday. He was on his way into work and was ready to settle into his day. When he asked me how I was, it was quite apparent that I was not in a good place. Dick and Eileen quickly put themselves on the road to drive down to see me. The hope was that if I were to see the two of them, the spirit that disappeared within me would miraculously reappear. It did not work.

That Sunday afternoon I ended up in Cancer Treatment Centers of America's emergency room. I was convinced I was going to die. I was admitted into the hospital.

The tomotherapy treatments were taking more out of me than I wanted to believe. I recognized, now that I was in the hospital, I had not been sleeping well, nor had I been eating enough to healthily sustain me. My downward spiral had started a couple of weeks back. I kept thinking I could rally...I always do.

Monday was a very busy day. The staff at CTCA were all over it. Not only was my doctor involved, I had visits from nutrition, mental health, mind & body medicine and care management. There was a concern that I might possibly have brain mets. A CT scan was scheduled. CTCA was going to get to the bottom of this and quick.

When all is said and done, I guess you could say my well was empty. My spirit was drying up. Fighting was taking its toll and I had not shared it with anyone.

Dick has stayed and spent the past two weeks with me. He has been tremendous support and has done a phenomenal job of pulling me up out of my hole. He returned home today. It was very difficult to let him go. My mom has arrived in his stead...I continue to be in good hands.

Two weeks later I am a new person. I have renewed energy. With the help of a funny little pill by the name of Marinol, I have an appetite...and a sense of humor. I am sleeping soundly at night and I have great hope.

The CT results show that my brain has not been invaded. Hallelujah! The radiation treatments are going very well. My pain has completely disappeared. Dr. Eden is very impressed with my results thus far and feels we are beating the enemy. I am down to just seven more treatments. My fighting attitude has returned and I am once again a warrior.

Happy to be 49!!!!!

2008-08-19T21:01:00.001-05:00

I don't know how it can be that I return to my home town for rest and relaxation during my radiation treatment and all hell breaks loose...but that's what has happened these past few weeks. Details in a minute....

Before I get to that, I want to thank all of you that followed through on Dick's secret plan to wish me a happy 49th birthday. I had no idea he had this rather large plan in motion. I have been overwhelmed with love. The support I received from all of you, if ever questioned, became very apparent during my birthday week. I received so many lovely cards and emails, beautiful floral bouquets and delicious fruit baskets. Normally, I would be embarrassed and rather upset with Dick. Not this time. Leading up to my birthday I had been physically drained and his secret and your gracious follow through was just what the doctor ordered.

I do not know what happened. My sister, Margaret, lives close to CTCA in Zion. She had offered her spare room and asked that I stay with her during the duration of my tomotherapy treatments, which will last about six weeks.

When two sisters are going to spend six weeks together, there is great anticipation of doing fun 'sister' stuff. Shopping, dinner out, craft stores... My first evening in my new home was a Monday. I had received my first radiation treatment earlier in the day. Looking back, I may have pushed myself too hard that evening. As I was settling into my new home, something strange was settling into my body. By Wednesday evening I was down for the count.

The week went on and each day progressively worsened. By Wednesday evening, I was fighting a fever of 103 degrees. I felt as if I had been hit by a MAC truck and left behind for vultures to take me, piece by piece.

When I reached the treatment center Thursday morning, I insisted I meet with my doctor and explain how I had been feeling the past days. As I thought they might be, they were very concerned and started running blood tests and cultures. No radiation for me...not for a few days. Instead, it was decided that my time would be better spent in the infusion center receiving two very strong antibiotics.

As my fever started to level to a normal rate my radiation treatments resumed. With that, I also continued my antibiotic infusions. This made for long and tiring days.

The good news.... Whatever decided to take up residence in my body has decided to move on. The bad news....we have no idea what it was. My thought is my body is starting to rebel and does not like the port I had surgically inserted a year ago. It is a foreign body and my body just might be rejecting it. The time might soon be approaching for another small surgical procedure and have it removed. I do not want to experience that level of illness ever...again. As Margaret has stated several times, she was afraid she was going to walk in the room and find me dead. She is not exaggerating.

I'm back on track. I have been able to proceed with uninterrupted tomotherapy treatments for one week now. With the consistent treatment, the pain in my rib area is quickly subsiding. My level of pain three weeks ago was about a 9 out of 10. I am now living very comfortably at about a two. That is when I choose not to cover the pain with medication. Something good is happening in my lung!!!!

I apologize for not writing sooner and thanking all of you for the memorable birthday. Your participation was truly overwhelming. As I begin this week, I am just now able to relax without pain or concern of illness, and enjoy reading each card and take in the scent of the beautiful bouquets that are filling our home.

I am looking forward to celebrating my 50th with you next year!

Disbelief

2008-07-29T09:14:00.001-05:00

Some days I am amazed with what I learn about the cancer treatment world. There are many days I feel completely overwhelmed. Other days I am in disbelief. What I have learned in recent days finds me in the disbelief category.

When I was at Fairview last week, I was basically being forced by the hospital to go with the radiation center that is adjacent to the hospital for my treatment. (There must be a contract between the hospital and this specific radiology group.) I felt like my back was up against the wall and I was made to believe that if I did not go with this specific group of radiation oncologists, I would be making a bad choice in a critical decision. I had mentioned to the doctors that my wishes were to have treatment at CTCA. The response that I received from the group was nothing less than eye rolling and a threatening tone.

During the time in which pen was in hand and a contract to begin treatment was being forced upon me, I felt my entire body respond to the tactics. My blood pressure dropped, my temperature rose and my body was overcome with a physical response. Quite frankly, I felt I was about to code and begged the radiation team to wheel me back to my hospital room for observation.

Looking back, I now realize that something bigger than me was intercepting my care. Once my body had recovered from my subconscious response, I was forced to stand up for my own beliefs the following morning. It was the many angels that have been following me that had knocked me upside the head. They certainly know how to get ones attention when they need to! After experiencing the very strong 'ah ha' moment, I canceled all further treatment with the local radiation team.

When we arrived at CTCA on Friday we were educated on the advanced treatment options they have available. I also learned that CTCA is one of very few TomoTherapy practitioners available. Upon further research, I learned that the group in Minneapolis does not offer the therapy.

If I had not taken the time to recognize what the universe was trying to tell me, I would have begun my treatment back in Minnesota. The treatment would have taken care of my immediate pain, but it would not have helped me long term. The feeling of hope that I am now experiencing would never had occurred.

The part of me that is in disbelief is the fact that there are facilities that are aware of better and more advanced treatment options. Instead of sharing this information with patients in need, these facilities choose to do what is best for their bottom line. Sadly, the more I am learning about this industry, the more I am learning how prevalent these practices are believed and followed.

Lessons learned last week;

1. Follow and listen to ones gut.
2. Ask questions
3. Be your own advocate.

Surely you will run across similar situations during your daily struggles. Take the time to listen to what is best for you. The other guy has his own best interest covered.

Open Road

2008-07-28T00:12:00.001-05:00

There is so much to be communicated. So many things have happened this past week. Quite frankly, I am having a difficult time trying to figure out how to compose an abbreviated version of the week and still have my words make sense. Add to that the fact that I am on time release morphine and dilaudid for breakthrough pain. Oh boy. Let's put it this way...I am asking for your patience as you attempt to decipher my words.

First things first. I have been released from the hospital. The doctors at Fairview knew they had to release me with their blessings. It was that or I would have bolted without their consent. That would have turned into undesired stress for all parties involved. I was released Thursday afternoon. There is no diagnosis or medical understanding as to what was causing my symptoms last week. The doctors are just as frustrated as we were. I was stable and gaining strength at the time of my departure.

From the hospital Dick and I went home and I packed for my planned one month stay in Illinois. I packed in record time. Ladies, can you imagine putting together clothing, shoes, lingerie and toiletries in forty-five minutes? I am still questioning how I had the energy and the ability to focus on the task. Before I knew it I was giving Bert, our adorable dog, yet another hug good-bye and we were on our way to Illinois. On schedule!

Dick and I met with the Medical Director of Radiation Oncology at CTCA Friday afternoon. He had an opportunity to review my CT's from the previous Sunday. He was in agreement with the Minneapolis radiologist. My pain is being caused by bone erosion due to cancer on one of my ribs. He advised that he could treat that site. By treating the site they would be killing that part of the bone, thus alleviating the pain. Hurray!

The above information is the same treatment plan that the radiologist in Minneapolis outlined. This is very good. With that, this is where things become very confusing. The doctors at CTCA want to treat the bone as well as zap the tumor that is adjacent to the eroded bone. What? Say that again? You can treat the tumor as well? The doctors answer 'yes'. My thoughts begin to rush. You can see Dick's brain working in the same direction as mine. If you can zap that tumor why can't you zap the others that are in my lung as well? The doctor's answer 'we can'. 'The problem is the cancer growing in other parts of your body.' But doctor...there isn't any other cancer. Just these tumors giving me trouble in my right lung.

When Dick and I left CTCA early Friday evening, we were both of the understanding that the radiation therapy available at this facility has the ability to eradicate the tumors. Can you imagine the gamut of emotions we were feeling at this point? Number one...why wasn't this offered to us by the radiologist in Minneapolis? We're confused.

I return to CTCA Monday for a defined treatment plan. I will be measured, tattooed and have a mold created to protect my chest area during all of my radiation treatments. The length and duration of my treatments will be decided at that time as well. The doctors will also be able to tell me if Dick and I were fantasizing or if we really did hear something as amazing as my tumors being completely treatable.

The Vitamin C treatment that I had planned to begin again is being shelved for the time being. Our focus right now is the radiation and alleviating my pain. We will revisit Vitamin C at a future date.

So gang, we will all be learning about radiation treatments to the lung together. Let's keep our fingers and toes crossed. When the doctor confirms what we think he communicated to us on Friday, I will go into greater detail a story about following ones gut...literally.

Thank you for your prayers and concern this past week. Aside from the effects from the pain meds, I am quickly regaining strength I have not enjoyed in quite some time. I do believe the blood transfusions may be adding a bit of a skip to my step.

As my good grade school friend, Sue, expressed in an email to me earlier this evening....You have MANY angels looking out for you, dear girl! Indeed I do!

Road Blocks

2008-07-23T17:31:00.003-05:00

I am still in the hospital. When I was initially admitted on Sunday, it was due to pain and constipation. From there, it was upgraded to the three P's. If only it were that simple.

Somewhere between Sunday and Tuesday, the three P's became less of a priority. It appears my body is fighting something. The professional community is at a complete loss as to what has taken over my body. I have been running a steady temp. It has spiked up to over 101 degrees, which is high for me, as my average temp is in the 97's. Add to that the fact that my blood pressure is lower than my average of 100/70. It's been as low as 70/50. (A person feels pretty lousy when it gets that low.)

Due to the concern about fever and blood pressure, I am being pumped with antibiotics, copious amounts of fluid and two units of blood. I've had more blood draws than you can imagine and a echocardiogram. I'm sure I'm missing a few things in there...but you get the idea.

The plan was to leave tomorrow for Illinois to begin my next round of vitamin C treatments. Until I have my pain under control and the specialists in infectious diseases have figured out what is causing havoc in my body, that plan may be shelved. We have decided we want to complete my radiation treatments and continue with the infusions at CTCA. The difficulty is getting my doctors here in Minneapolis to agree to my travel without answers to their current concerns.

In a word, this week has been frustrating. Okay...two words. Frustrating and scary.

Updates will follow. I am very aware there is a high level concern and wanting to know 'what's up'. I wish I had more to tell you.

I know that there are many wonderful prayers and positive intentions being sent my direction. Please know that I appreciate the time that you take to think of me and the energy that you provide.

Detours

2008-07-21T09:54:00.002-05:00

Typical Monday morning conversation; So...what did you do this weekend? My response would be 'I tried to control the pain that has been continuing to build. On Saturday, Dick and I ran errands. I should restate that. Dick ran errands. I sat in the passenger seat and watched him run in and out of stores. Saturday night I found myself very restless and without sleep. The pain that I had been experiencing in my rib area turned into spasms. Add to that the gastrointestinal problems I am experiencing from the pain meds I had been taking...I had a 'trying' weekend'.

When one lacks sleep it is difficult to think straight. Many things run through a worn and weary brain. My thought process concluded that I was experiencing liver or kidney problems, as the pain I have been experiencing is in that area. All I know is I was very uncomfortable. Sunday morning greeted Dick with me in tears and asking that he take me to the emergency room.

The emergency room decided a CT scan was in order. The results came back with what appears to be erosion of the bone between ribs 9 and 10 on my right side. Bone mets. It has been confirmed with me that erosion of bone is uncomfortable and painful. It's nice to know I'm not a wimp.

From the emergency room I have been admitted into my very familiar room at Fairview Southdale. Room 819 is going to be known as my signature room. I am going to start decorating it and adding my own personal touches to it soon. Funny...but not so much. It's a private room. That is always appreciated.

Right now the focus is to get my pain under control using various forms of morphine. We are also working on getting my intestinal disturbances under control. From there discussions will be taking place with regards to a treatment plan regarding my rib area. The word 'radiation' was thrown into the conversation yesterday. Ugh! As the next few days unfold the plan will become clearer. Right now we are dealing with the three P's....pain, poop and plan.

It's been a difficult twenty-four hours. I feel as if the wind has been knocked out of our sails. We had been living with such high hopes as we felt the Vitamin C infusions were assisting me in turning the corner. I'm not ending that part of this fight...just taking a bit of a detour.

It's Working!!!!!

2008-07-07T14:36:00.000-05:00

I am in the final week of the four week trial here at Cancer Treatment Centers of America in Zion. Have you heard? We have reason to celebrate!!!

Last week I was experiencing rather extensive back pain and spasms. The doctors wanted to run a CT to rule out a few of their concerns. Although the CT did not give answers as to my back pain, the scans did show tumor reduction! I received the great news right before leaving for the 4th of July holiday. We're all extremely happy around here.

Dr. Stephenson sat with me this morning and explained that the largest and fastest growing tumor in my right lung is showing great response to the Vitamin C infusion. In his words, the tumor is showing necrosis. Basically, the tumor is dying from the inside and any blood supply is quickly being cut off due to the Vitamin C.

We are still working out the 'what next' details. They have invited me back for the next phase of the study. They would like me to take a month off. At that time, if there is not significant change in tumor growth, I will be a guinea pig for another four week experiment. Seems worth it to me!!!!

Isn't that some of the best and most incredible news you have heard from me in a long, long time? My big tumor is dying!!!!

Blessings to all of you. You have played a HUGE role in this and deserve your own congratulations and celebration!!!!

Oh....and I think I figured out the back pain. Please don't refer to me as the Princess and the Pea or Goldilocks..... The bed that I have been sleeping on is too soft.

Guinea Pig Updates

2008-06-23T20:45:00.001-05:00

Last week was a rather long and grueling week. I apologize for not updating and letting you know how the trial has been going.

Where to begin...where to begin....

First, I will begin by thanking all of you for the prayers that have provided this amazing opportunity. As the days have passed, I am learning more and more how fortunate I am to be involved in this trial. There are many, many people requesting to be a test subject. Fortunately for me, unfortunately for others, the criteria is very strict and CTCA must be very selective when accepting their candidates.

The first week of the trial was rather grueling, which helps me understand why they are so selective. Candidates must be healthy (well, as healthy as you can be with Stage IV cancer!) Having gone through my cleanse and clearing the toxins out of my body has assisted me greatly with my energy levels.

My days begin at 5:45 a.m. to get to CTCA by 7:30 a.m., as the commute is about 45 minutes. The first thing we do upon my arrival is vitals, urine and blood tests. They are required to test my kidney's, liver and other blood levels. Once that is approved...the infusion is a go! The infusion generally starts at about 10:00 a.m.

During the infusion, my vitals are checked every 15 minutes, including constant monitoring of an EKG machine that sends signals to the intensive care unit via satellite. I have been keeping ICU very busy, as we have learned through this that I am bradycardia (http://en.wikipedia.org/wiki/Bradycardia). Evidently monitors are going off in that department as if I am code blue many times throughout the day.

So...the infusion begins. After a bit of time thirst begins. Along with a 1500cc IV bag, I am drinking about a gallon of water during a 2 hour period. I don't need to tell you what happens when the body is saturated with fluids. So, before I know it, I am signaling to my nurse that I need privacy for a the portable potty, as I am not able to move too far from my bed, as I am hooked up to monitors. Urinating every fifteen minutes gets very old.

Last week the days were very long. Monday I was in the center from 7:30 a.m. until about 5:00 the next day....constant monitoring and very little sleep. Thursday required that I have several blood tests, at various intervals, the last being 11:00 p.m. That had me settling in my bed at Basia's at about 12:30 a.m. I don't know about you...but for me, that's a very long day!

Earlier in the week, Dick and I decided I needed to fly home for the weekend. I arrived in Minneapolis at about 4:30 p.m. Friday afternoon. When I saw my bedroom, I dived for the bed and stayed there until about 9:00 a.m. There is nothing like your own bed!

This week and next will be a bit less intense. My days will last until about 2:00 p.m. and then I will free to do as I wish.

There is really not much else for updates. Boring...I know. The big results will come at the end of the 4th week. Dick and I plan to spend that weekend in Chicago. We have a hotel booked on Michigan Avenue with the plan to celebrate and rejoice in good news.

The most difficult part of this journey has been being away from Dick and Eileen (and Bert). Vacations are one thing. Being away under these circumstances, one finds themselves in need of comfort, hugs and familiar surroundings.

Thank you so much for your continued prayers and support. You are all my hero's!

Official Test Subject

2008-06-16T19:08:00.001-05:00

Thought I would take the opportunity to post an update. I am currently resting in my hospital room at Cancer Treatment Centers of America. Today was my first full vitamin C infusion. The procedure went well. Notice I didn't describe it as 'very' well. There were a few very tolerable side effects. One of them was being sick to my stomach. I don't care for that so much. Tomorrow's infusion will be better as they will adjust certain dosages. Hey...I'm a breathing petri dish in a Phase I trial. These things are going to happen.

My diagnostic testing last week returned good results! I am very happy and relieved to report that there has not been significant tumor growth in my right lung. That is a reason to celebrate in itself. The best news is that my scans showed that these tumors are still just hangin' in my right lung. No migrating to other organs!!! YES!!!!

One concern I had during all of my testing was that my blood counts or kidney function might cause me to be ineligible for the the trial. More good news....I am a very, very healthy specimen. As I was educating myself on this specific trial, I found a website describing the individuals involved in this trial as 'one foot in the grave and the other foot on a banana peel'. How dare they!!! I'm very far from that, thank you very much!

My days over the next four weeks will be very busy. I am required to be at the hospital every Monday through Friday at 7:30 a.m. My infusions and observation take place until about 2:00 p.m. daily, with the exception of Friday (they let me go early on Friday's). After that I have a rigorous schedule of acupuncture, massage, reiki, massage and more massage. Hey somebody has to do it!!

My dear friend, Basia, lives about 45 minutes from CTCA and is providing a relaxing and comfortable environment in her home. She even has a sweet puppy that enjoys sitting in my lap (sorry Bert!). A home away from home. We juice and create healthy food concoctions together. We're having fun getting healthier as we learn. Thank you, Basia. Your gift of hospitality and friendship will be forever appreciated.

There's the update. I am an official test subject. It's hard to believe sometimes. Me...the girl from Zion, could be setting the course for future cancer treatment. Cool, eh?

Here's the deal. I'll keep the positive attitude...you keep those wonderful prayers coming. Good things are bound to happen.

My love to all of you.

Of all things....Vitamin C!

2008-06-05T19:17:00.004-05:00

The headlines are going to read 'Woman Returns Home For Cancer Cure!'

Oh...sorry...I should probably explain the latest and greatest news!!!! I am going to be a human guinea pig. A living petri dish. A very lucky test subject!!!!

Last Saturday morning I was exploring various cancer treatment center websites for clinical trials. My search brought me to Cancer Treatment Centers of America in Zion, Illinois. I checked out their trials and found 'Clinical Trial of Intravenous Vitamin C for Cancer Treatment Underway'. Not only is it underway, but they are seeking test subjects. CTCA's first ever FDA approved clinical trial.

I made contact with CTCA that very moment. Wrote, in detail, my current plight. I said a prayer when I hit the send button; 'Please, Lord, guide this to the proper hands'. That person responded to me on Monday. Tuesday and Wednesday began a flurry of phone communications. Today, I was told I was accepted. Amen!

Things have happened very quickly. I report at 8:45 a.m. next Wednesday. The first day will be diagnostics. Thursday I meet with the head of the program, Dr. Robert Levin. We proceed from there. It will require four days of infusions for four weeks.

Maybe I should explain the meaning of Zion, Illinois to some of you just getting to know me. Zion is my home town. I was born and raised there. Grade school, high school, my first kiss.... Yup....Zion.

Anyone that knows me, knows I am a 'Google' nut. I've been doing my research on the Vitamin C subject. This, quite frankly, sounds God-Sent and amazing! This Phase I trial holds great promise!

A good friend has already shared a personal story of a local woman here in Minnesota. She was in late stages of cancer. Advised by her doctor that she had about one month to live. She chose to investigate an alternative therapy....Vitamin C infusions. She is now enjoying her forth year of remission! There are many, many more reports with similar outcomes.

When I was told in April that I was not a surgical candidate and I no longer had other viable treatment options, I felt I was being told I had a limited future. At the same time, I also remember telling myself there was a reason I didn't have those options. I allowed my faith to carry me. It has carried me through so much. Faith has now brought me to this place. I am whole and healthy....and ready to kick some butt with Vitamin C of all things!

Your prayers have indeed been working! Thank you for being with me and believing!

This story should be for my friend Montel Williams. Unfortunately, his show is no longer airing. Oprah... I have a great story to share with you. Care to listen?

http://www.cancercenter.com/research/1.cfm
http://www.cmaj.ca/cgi/content/full/174/7/937

Vow Renewals

2008-05-29T09:56:00.007-05:00

We had a beautiful vow renewal ceremony on Sunday, May 25. It was an amazing evening.

Our Host and Hostess, Bill & Sue, created the perfect setting for a ceremony and a rockin' party. We were originally married on their boat, Exuberance. It was only appropriate that we celebrate our renewal at their new home. and was it new.... The driveway, entry steps, landscaping, etc. were still being completed the day before the ceremony!!!

The weather leading up to the event was a bit turbulent. We were concerned about how we were going to handle the planned outdoor ceremony, knowing there was stormy weather, including tornadoes, just north of us. Shortly before guests started arriving, the dark clouds disappeared, the sun shined and the universe granted us a gift of an incredible evening.

Dick and I were surrounded by many people that have supported us through the years. The love being shared during the ceremony could be felt as the energy sparked in the air.

Our photographer has provided a link to the evenings photographs. As the pictures express, the exchange of vows was very emotional. We are so blessed to have each other. I love you Dick....and I still choose you.

If you would like to get a peek at our evening through photos......

link: www.kaminphoto.com

event code: Bienapfl

Spring Harmony

2008-05-09T13:51:00.000-05:00

What a wonderful feeling. The sun is shining. Plants are showing signs of coming alive. I feel good...really good!!!!

I never imagined I would be experiencing the wonderful energy I am feeling. I don't know if it's the cleanse (one more week left of the twenty-one day program), the fact that I have had enough time for the chemo to gradually work out of my body, the Quantum Touch I experienced this week, my wonderful acupuncture or the beginning of my macrobiotic lifestyle. Whew...I've been busy!

What I do know is that something or the combination of all of the above is granting me harmony within myself. It's almost as though I am on a high at times. I catch myself smiling and humming...at life!

With the experience of feeling better, I find that the cancer focus is no longer the constant talk in my head. When one feels their body has been drained it is easy to focus on only one thing. My brain is moving on. My heart is embracing what the universe is sharing with me. It's almost as though I can feel all the wonderful thoughts, prayers and support being sent flowing within me.

I am so grateful to be at this place. You are good. God is good.

May the harmony and happiness that I am feeling reverberate and resinate within you.

Healing

2008-04-29T10:51:00.002-05:00

The disappointment and unsettling news we received two weeks ago has slowly processed. Normal routines are quietly replacing the deep sadness we were experiencing. It is amazing the hit a body takes when emotionally shaken. It seemed every movement required extra energy. I personally did not have much in reserves. Dick was down in the trenches with me. I don't think I have ever seen him so affected. It was difficult to watch him so low.

Although I do not have the answers as to why things happen the way they do, I have a deep faith and belief that this is all part of a bigger plan. The break in treatment is allowing my body to be rejuvenated and healed in other ways. With that, I am now being given the opportunity to learn more about alternative therapies. My naturopath, Annika, is preparing me with an arsenal of supplements. The amount of research she has done is astonishing. Herbs and natural remedies can do remarkable things.

Tomorrow I have a class with a macrobiotic chef. She is going to show me that healthy eating does not mean giving up on entertaining ones taste buds. My own research has shown that a healthy diet is going to be one of my most beneficial natural cures.

It is interesting the response I receive when I tell people that I am changing my diet to complete vegetarian. Most responses are 'if I were you, I would just eat whatever I wanted and enjoy that part life.' Not so much. There is a definite fork in the road where you need to make that decision. My decision is to do all I can for me and the people that I love to extend my personal ride as long and as healthily as I can. I can't imagine telling Eileen I would rather eat steak and overdose on chocolate cake rather than spending more time with her. Need I say more?

Through all this, so many wonderful and caring individuals have reached out to us. This is truly one of the most amazing blessings we have received in our lives. We are so thankful for all of the support. Although I have not been able to personally write and acknowledge each thoughtful note or phone call, please know that your words have been received and are deeply, deeply appreciated.

phoe·nix Pronunciation: \ˈfē-niks\ Function: noun 4. a person or thing that has become renewed or restored after suffering calamity or apparent annihilation.

Disappointment

2008-04-16T09:55:00.005-05:00

The trip to Cabo San Lucas was glorious. The home was just as I had remembered from the last visit Dick and I enjoyed. The beautiful weather allowed for daily morning walks and sitting around the pool for hours taking in the healing powers of the sun. Evenings in the hot tub allowed for great conversation...and we never solved the problems of the world. I was blessed to be surrounded by two wonderful, caring and fun loving friends. A very special trip indeed.

Returning from Mexico was a busy time, as it gave me few days to prepare for my upcoming surgery. Knowing one is not going to be able to physically be involved in spring cleaning, digging in my garden and comfortably breathing in the fresh air of the season found me a bit melancholy. With that, the surgery was bringing me great hope in life...my own spring renewal.

This week started with diagnostics at Mayo; blood tests, pulmonary function tests and a final CT scan. Our meeting with doctor Cassivi was scheduled for Tuesday afternoon. I packed my bags, finalized personal paperwork, gave Bert (our super dog) a hug and let him know I would see him in a few weeks. These past days have been very emotional. Leading up to this final appointment was torturous for both Dick and me.

We arrived for our appointment yesterday afternoon. Dr. Grothey saw us first...which I found surprising. This appointment was scheduled with Dr. Cassivi. The first words Dr. Grothey asked were 'how are you feeling?' How am I feeling? I am feeling great. I've been off chemo, enjoyed warm weather with friends...life is great! He asked again. My mind raced. Oh no....please, don't tell me surgery is off!!!!

My suspicion was correct. He explained to me that after further review of my most recent CT scans and the placement of one specific tumor, he felt the surgery would not benefit me. Doctor Cassivi joined in our conversation and was in complete agreement. Basically, what they told me is what I had been told last June. I am inoperable. They could remove some of the tumors. Unfortunately, they would have to leave most of the tumor in my pleaural lining. With that and the risks involved, they felt it was not in my best interest to pursue the surgery.

I was told to enjoy the Spring. Enjoy the feeling of being whole and healthy. Take a break from cancer. Dr. Grothey said he would see me in June and see if there were any trials we might find beneficial. In the end, Dick and I knew they were kindly telling us to go live life and continue with the positive attitude that has carried me through so much.

I know that so many of you have been praying for me. Although not directly involved, I am aware that you have been feeling anxious and concerned about the procedure. So much energy being given. Thank you.

I awoke this morning numb. Tears have been pulling themselves up from deep inside my gut. I've barely spoken a word to Dick. We just sit quietly together not knowing what to say or do.

Give me a few days....this lost feeling will turn around. I already have a plan. Exercise, yoga, meditation and hire a nutritionist to help me figure out how to make food that is good for you taste good. The most important thing I am going to do is wake up each day with a deep appreciation of having the opportunity of doing so.

Things happen for a reason. Although it feels like my life has been pulled out from under me....giving up is just not my thing. Hope, love and the power of prayer. That can't be taken from me.

My need (our need) for your prayers has not ended. Now, more than ever, I will be reaching out to you for your energy. I am always being asked 'what can I do for you'? My answer has not changed....pray, pray, pray.

Mentally Preparing

2008-04-01T22:59:00.001-05:00

Today was 'Target Tuesday'. Between Eileen's schedule, my heath complications and travel, we have not had an opportunity to enjoy our special day together in quite some time . We went out of our way today knowing this would be the last Tuesday we would spend together for several weeks.

It's amazing how good one can feel when no longer being pumped with chemo. The trip to Sacramento last week was a reminder of how it feels to live fully. It feels pretty darn good! The days started early and ended late...and I was able to keep up!!! Good thing, as I leave on Thursday for the planned girls trip to Cabo San Lucas. The trip to Mexico will be all about rest and relaxation. The plan is healthy eating, meditating, reading and soaking up the sun. (Okay, I might slip a Margarita or two in there as well.) I should be well prepared for surgery upon my return.

Planning for surgery is a very strange experience. When I had surgery last June, it was within days of learning that the cancer had spread. Being given time to physically prepare myself is quite difficult on the psyche. I don't know what is causing the most trepidation...the surgery or the recovery. I have a very good memory...and it hasn't forgotten the experience of a less complicated surgery.

My surgery date is actually April 16th. We misunderstood Dr. Cassivi when he scheduled time on the 15th. The 15th is meant as a final review of the procedure. We will be advised that day of the actual surgery time on the 16th. So....the 16th will be the day I would really appreciate your prayers. I am going to ask if you could also send positive energy and prayers to all of the individuals that will be involved in my care as well. Hey...I'm going to be sleeping and on happy drugs!

My blessings and well wishes to all of you. I wish I could wrap my arms around each and every one of you and thank you personally.

Miracles....they do happen

2008-03-12T21:49:00.001-05:00

Dick and I tried to mentally prepare ourselves for our meeting at Mayo today. My PET scan took place at 11:00 a.m. Our appointment to meet with the doctors was not until 4:00 p.m. Of course 4:00 p.m. dragged on to 4:45 p.m. Early on, we both agreed, if there is only one doctor in the room, Dr. Grothey, the scans were not good.

When we were called in for the appointment there was only one person waiting in the room for us. He immediately introduced himself to us as the lung surgeon's assistant. The first thing he did was hand me a pamphlet on lung surgery. He told us it would be a few minutes, as both Dr. Grothey and Dr. Cassivi were discussing the details of my case. I turned to Dick with a smile....it's a go!

My PET scan results came back showing no progression. The cancer has not spread to other organs. That, in itself, is a tremendous relief.

Both doctors entered the room. Dr. Grothey introduced his trusted colleague and told me he would leave us to talk for a bit and that I was in good hands.

I think this new doctor in my life wanted to get a good look at me. Size me up....see if I was worth surgical odds. He quickly learned that he is working with a true fighter. Before I knew it, a surgery that I was told was impossible was being scheduled. April 15 is generally not a day most Americans look forward to...dreaded Tax Day. For me, April 15, 2008 will mean I no longer have cancer in my body.

It's not an easy surgery. It's not a quick recovery. It is the beginning of a new life for me.

Miracles do happen. Silver linings can be found. Prayers are answered.

I am on a high. My words may not make complete sense. I needed to communicate the high points. I will provide more detail after I have allowed my new reality to be absorbed.

Heavy hitters....I asked and you provided. Thank you just doesn't seem to be enough.

More details to follow. For now, I need to rest and enjoy a pleasant night of dreams....dreams with a future.

Miracles

2008-03-10T15:51:00.000-05:00

As a separate post, I wanted to share with you a story Dr. Grothey shared with us today.

He had a patient about five years ago that had stomach cancer with a very poor prognosis. The patient was given the protocol of 5-FU (my first treatment therapy). The patient had a severe reaction to the treatment. His body responded to the therapy as if he had been given a dosage 100 times the amount given. He should have died.

This man was very lucky. He ended up in the hospital for three months in a coma. When he awoke from his coma he had been completely cured. He recently celebrated his fifth year of being cancer free.

I believe Dr. Grothey shared this story with me for a reason. I am holding on to that hope and believing that things happen for a reason....miracles take place every day.

Requesting Heavy Hitters

2008-03-10T15:30:00.000-05:00

Today was a short day at Mayo. There are so many items to be communicated, I don't know where to start.

First, I will ask that you hold me in your very special prayers this week. I am numb at the moment, as the realization of what the next couple of days holds is hitting quite hard.

There was no treatment today. My body is depleted from my last treatment and the complications that occurred thereafter.

I learned today that my body may be genetically allergic to the newest protocol of Irinotecan. My doctor requested a blood test that will tell us for sure if that is the case. He shared with me that being genetically predisposed is so rare the test is not routinely given. Well, we all know, in his words, how 'unique' I am.

With the above information, this is what he thinks happened that landed me in the hospital. I am most likely allergic. My body did not process the chemotherapy as it would normally. It most likely went through my body two maybe three times. To make matters worse, if he had known I was allergic prior to treatment, he would have reduced the dosage to one quarter the amount given. If I have my math correct, that would mean that I received eight to twelve times the amount of chemotherapy my body can tolerate and stay within the healthy limits of treatment. Thankfully, I am recovering without any long term damage. My kidneys and liver show no signs of stress.

Here's the deal. He does not think I should receive Irinotecan again....ever. With that, he confirmed with me there are no more chemotherapy treatment options. No more tricks to be pulled out of his magic hat.

So....what now? A PET scan has been scheduled for Wednesday morning. If the scan shows that the cancer has not traveled to any other part of my body, I will meet with a thoracic surgeon and Dr. Grothey Wednesday afternoon to discuss surgical options. Should the scan show more metastasis I am not a candidate for surgery.

Here's the synopsis. At this time, if I am not a surgical candidate, there are no more treatment options.

Prayers....positive intentions...healing energy....miracles. Please, I could use your top guns right now.

There's No Place Like Home

2008-03-03T14:11:00.001-06:00

I returned home from the hospital on Saturday. Last week was a hellish week. One always fears the complications of chemotherapy. Treatment is not really as easy as some would think. Throw a few toxins in the body...kill the naughty cells and be done with treatment. The truth is, there are many battles being waged. This current battle quickly turned into a war and I did not have all of my armament to defend me. My body just could not tolerate the new regimen.

We go back to Mayo to meet with Dr. Grothey next Monday, March 10. Dick and I are both at our wits end as to what we should be doing and what path should be followed. We are completely frustrated by the fact that the professionals do not seem to think that there is any other way to attack this beast other than with chemotherapy. Well, that's a problem, as I am running out of options even with that. I have gone through four different regimens thus far. There aren't many rabbits left to be pulled out of the hat. My cancer is a very specific squamous cell. It isn't treated like a typical colon cancer.

We are heading to Charleston, South Carolina on Thursday and will not return until Sunday evening. We will be celebrating Dick's parents 65th wedding anniversary. It will be good for both of us to get away. It will allow us to think of something other than the "C" word and the next upcoming battle that Dr. Grothey has planned.

Last week was a true testament to the power of prayer. I know I could not have pulled through and recovered as quickly as I did without being surrounded by all the people I have been blessed with in my life. I want to thank you from deep inside my heart.

A New Day Has Come

2008-02-29T16:38:00.001-06:00

The view from the windows in my hospital room creates a desire to rejoin the world. I see traffic flowing out on the freeway near the hospital and recognize that the world continues to go on...I want to be a part of it. That would lead me to believe I am feeling better and recovering!

I have had a very healthy day today. I am tolerating food, napping peacefully and feeling so much better than I had been. If what I have been experiencing today continues until tomorrow morning I will be given my pass to escape. Yipee!!!!

I never would have imagined that when I arrived in the emergency room Monday afternoon that I would still be here today. Of course, at that point, I didn't know if I would make it out of the emergency room alive. Quite frankly, I was about as scared as I have ever been. At the time I thought I was being redirected on a long detour in my road in life. I now recognize it is was just another bump in the road. It has been a reminder to to live life presently and not be so concerned about what the future holds.

Set me free....I am ready to experience the joy of unwrapping multi-colored bows of each day.

Calling Fairview Home

2008-02-27T10:36:00.000-06:00

Dr. Rousey was just in and advised that I will continue to be at Fairview Southdale until at least Friday.

The concern is keeping the potassium pumping as my trips to the bathroom really haven't reduced in number. He advised that it will take about 7 - 10 days for my raw digestive tract to heal itself. Basically, he said the body recovers quickly, considering, but not quick enough when one wants to break out of the confines of a hospital.

I am finding that I am more tired today and my body is feeling exhausted in a different way. Now that I am able to take a few deep breaths, I think the stress of the past few days is catching up with me and I just want to sleep...sleep...sleep.

They moved me to a new room last night. It's like a penthouse suite compared to my initial quarters. I have two windows now and a full private bath! I'm moving up in the world.

There are many wonderful people praying for my complete healing. I am humbled and grateful.

Hospital Update

2008-02-26T13:21:00.001-06:00

Evidently I'm as sick as I thought I was. Yes....physically.

Dr. Grothey (Mayo) and Dr. Rousey (local) have agreed they want to keep me in the hospital for a longer period of time. Their theory yesterday was 'let's keep her overnight just to appease her'. Ah...now they are recognizing that I am one sick and uncomfortable patient.

They can't give me a specific length of stay. Just until they get 'things' under control. Until then I will continue to be pumped with gigantor bags of potassium and other drugs to keep trips to the bathroom to a minimum.

Thank you for all of your prayers and positive intentions. I know how powerful your thoughts are and I really do appreciate it.

The Ride Continues

2008-02-25T21:17:00.001-06:00

Did I say something about having to jump back on the roller coaster? We have been on the ride for a week now and it hasn't slowed down.

I am in the hospital. There have been complications from my last treatment. Evidently my body could not tolerate the Irinotecan/Erbitux combination.

One always expects side effects from treatment. The scary part about experiencing a new treatment is that you don't know what to expect. It's a given that you will have a few down days. You then bounce back and are thankful those days are in the past. That didn't happen this time. Instead of getting better, my body seemed to be getting more worn and tired.

One of the side effects this treatment alerted me to from the beginning was diarrhea. I prepared myself for that. Just the opposite occurred for me...but I won't get into those details. It's what happened this morning that scared the...well, you know....out of me.

A few days late, but I did experience the expected side effect. Unfortunately, it included bloody body tissue as well. (Ewwwww....I know!) That would be parts of my intestinal tract sitting in my toilet. This is not good....not good at all.

I took it on a good friends advice to get a ride in the back of an ambulance to the emergency room. The emergency room confirmed my fears. My insides are torn up from treatment.

Quite frankly I am very scared. My body has been compromised. I am physically weak. I have no idea how long it will take to repair my torn body and bring myself back to healthy levels. I am dehydrated and hooked up to IV's right now. Evidently my potassium levels are cranky.

Dick left for California this morning not knowing what the day would bring. Eileen has been such a trooper. She has been at my side this entire day. I love her dearly. I just wish she didn't have to grow up so fast.

More updates tomorrow. Let's pray for better news.

Back On The Roller Coaster

2008-02-18T12:08:00.001-06:00

Group hug please!!!

It has been a rather difficult morning. We met with Dr. Grothey and he presented results from my CT scan of Friday. I wish I had good news to deliver...but I'll just give the details.

As you know, there are several tumors in my right lung. There is one tumor specifically that Dr. Grothey has been keeping a diligent eye on. That tumor has grown by about a third since my last scan six weeks ago. The other tumors are about the same size as previous scans. Dr. Grothey is very concerned about the rate of growth and the size of the one specific tumor.

The good news is that these nasty cells have not spread to my bones or liver. It's quite amazing the detail the CT's provide. Sigh of relief there. Thank you, Lord.

My treatment regimen is once again changing. Today I will begin infusion of Irinotecan (CPT-11, Camptosar) and Erbitux. Yes, that nuisance of a rash from the Erbitux will be returning. I guess that's the least of my problems at this point. I don't know anything about the Irinotecan....thus more reading and self education on my part.

As Dr. Grothey explained, once again, what I have is so rare that there is not a tried and true treatment. He feels the Irinotecan/Erbitux is very synergistic. In his words, it's like 1 + 1 = 5. Hey baby, I could use all of the synergy the universe wants to send my way right now.

I have done a fair amount of crying this morning. The news is quite a blow as I had been feeling so positive. The nurses here at Mayo are amazing and have been so supportive and understanding.

Dick could really use a hug as well. He joined me this morning, thank goodness. I think I would have found a hole to hide within the walls of this large campus. He is a bit dazed himself right now but is finding the strength to provide a positive attitude and solace.

Ah yes...the comfort we were experiencing has ceased. We have now jumped back on the roller coaster.

My love to you all.

Welcome Back Old Waistline

2008-02-13T12:00:00.002-06:00

Swimsuit season is fast approaching. The pH Miracle way of eating is certainly assisting in any desire I might have to wear a swimsuit comfortably and without internal bad talk. (ladies, you know what I mean)

I've been working so hard at alkalizing, it seems it is all I think about. Could it be that I am constantly hungry and craving chocolate or something as simple as a comforting cup of joe? My breakfast this morning consisted of homemade guacamole with a sprouted whole wheat tortilla that I cut up and made into chips. Better than the green vegetable concoction I'm supposed to be downing every morning. When I go to 'drink' my veggies....my throat almost closes up in revolt.

Okay...okay, all kidding aside. All of my hard work is showing a waistline I never thought I would see again...but, I am still not alkalized! Evidently I need to take the next big step and do a complete cleanse. (Too much information?) This frightens me, as my body is already weak from chemo treatments. I really hesitate to put my body through more trauma. I may have to write Dr. Young directly and ask him for safe suggestions. I never knew this would be so daunting. One must keep the goal of long term survival in mind. It's amazing what you can do with a little motivation.

Our household is on pins and needles this week. I have my next CT scan scheduled for this Friday at Mayo. Dick and I will return to Mayo again on Monday to meet with Dr. Grothey with the hope that he will have diagnostic results. I also have my next treatment scheduled for Monday. I feel very good about my scans and am really not carrying concern. Your prayers and support continue to lift me. Thank you!

I will be returning to Mayo again on the 26th, as I have been invited to join the Executive Director of Get Your Rear In Gear!, a local organization supporting colorectal cancer research and awareness. She has asked that I present the world-renowned researchers with my personal story and put a human face in front of the very people that provide life saving research. I am really looking forward to that opportunity.

My Qigong sessions have been going very well. Through Qigong I am learning to meditate and focus on my complete healing. I attended my most recent session this past Monday. I voiced a concern of extreme mid/upper back pain, which is very unusual for me. My concern was returned with a smile. Evidently my daily meditation and exercises have been moving old and stagnant energy out of my lung area. Master Lin informed me this is a very good thing and advised that health is returning to my body. Qigong is some pretty cool stuff. I highly recommend it...even if you are healthy.

Other than having the winter blues, I am doing very well. This next month or so will find me in Charleston, SC, Sacramento and Cabo San Lucas...thank goodness! I know I am blessed to have these travel opportunities. Maybe God knows I can handle chemo better than the cold of a Minnesota winter.

I need to go eat something. Hmmmmm.....I wonder if I can figure out how to make creme brulee' out of tofu?

Mental Recovery

2008-02-01T14:46:00.000-06:00

I have recovered from my less light day of yesterday.

After going back to my post, I could see how my communication of crying about food could be misunderstood and I feel I need to explain.

My initial frustration came to light when I realized that the focus required to incorporate these new recipes into my life would be difficult to create physically and mentally. You know how it is...you have your top 10 recipes that you know and fall back on when you really don't want to think hard about what to serve. Simply put, my chemo brain does not allow me to think very hard about anything. I find it terribly hard to focus. New things are overwhelming...not fun like they once were. Thus, the initial mental crack.

All I really want to do is provide enjoyment to friends and family. Provide Dick & Eileen the comfort of a home cooked meal to come home to. Entertain with friends and serve delicious cuisine in the comfort of their homes. So, it really doesn't come down to the food. The real story is my acknowledgment that I am not the person I once was and I am not able provide 'my' gift.

I think what put me over the edge yesterday was a woman eavesdropping on my conversation with the store clerk. She heard me explain to the clerk that I was practicing Qigong (http://www.springforestqigong.com/). This woman came out of left field and basically told me I was dancing with the devil because of my meditation and movement of energy. She explained to me that as a Christian, we should never 'dabble' with our energy, as that is completely against Christian belief. She basically told me if I continue to practice Qigong, I am allowing the devil into my temple.

So...it's not food, okay? It's the fact that my body hurts more with each chemotherapy treatment. My brain is turning to mush. The pleasure that I derived from providing appealing and delicious nourishment to friends and family is basically ending. Oh...and I guess I'm becoming a devil worshiper if I choose to continue to practice Eastern medicine.

Some days it all gets to be too much. Yesterday was one of those days. Today I recognize my frustration and now I can learn from it and move on to more positive things...learning new ways to enjoy life.

Breakdown

2008-01-31T16:43:00.000-06:00

I had a breakdown in the middle of the grocery store today.

Some days being committed to beating this disease is all consuming. Similar to fellow cancer fighter and survivor, Chris Karr of Crazy Sexy Cancer (http://www.crazysexycancer.com/), I am not comfortable with accepting traditional treatment as my only treatment option. With that, the alternative world can become a very confusing place. There are so many options, all of which are financially draining. At what point does a person need to accept that cancer is what it is? Some of these suggested alternatives may extend your life, but do they really enhance it? If they don't, is it really worth extending?

My breakdown occurred as I am working ever so diligently on alkalizing my body. The theory is that cancer cells cannot survive in an alkaline environment. Currently my body measures 6.5, which is great...but not good enough. I've realized now I need to step up my diet. With that, I am attempting to follow recipes from the pH Miracle. After purchasing and reading the two cook books that have been published, I came to the realization that I would end up eating avocado's, tomatoes, broccoli, etc. for the rest of my life. No animal proteins, limited wheat grains, no alcohol and absolutely no sugar.

A very nice lady approached me at the grocery store and asked if she could assist me. It must have been so obvious that I was in the land of the unknown. She started asking me questions....and I started crying uncontrollably. I realized at that point, food, something that I enjoy preparing and socializing with, was being taken away from me. In the back of my mind I kept saying to myself "at least you can afford to change your diet to strict organic vegetables and you have the ability to prepare them and eat them". It didn't matter....it just kept hitting me...another basic enjoyment in life being taken away.

There were many caring people watching me crying over food. Some offered other alternative options. At that point I just wanted to scream. Why are there so many options, but not a reputable source to tell me what steps I really should be taking. I can't be the only cancer survivor out there trying to do just that...survive.

Planning For Fun!

2008-01-28T10:07:00.000-06:00

The funk from my most recent infusion has passed and I'm ready to face the world with full energy and daily appreciation. I've been idle and anxiously waiting a bit of special planning. I haven't shared with all of you an event that is taking place May 25. It appears that Dick is becoming more romantic with time, as he has suggested that we renew our marriage vows.

Our wedding anniversary date is July 22....the same date of my initial cancer diagnosis. When our anniversary approached this past July, neither of us wanted to celebrate. Just before Christmas, Mr. Romantic announced to me that he would like to change our anniversary date to May 25, the date of our first date.

Well, he didn't just announce his intentions to me, but pulled our very dear friends, Sue & Bill, into the idea at the same time. They agreed on the spot to open their beautiful new home to our friends and family. This is a tremendous and thoughtful gesture on their part as they are moving into their new home in March! Pretty gutsy of my husband, don't you think?

So...I feel like a bride again. Planning and preparing for a beautiful ceremony and celebration. A celebration of life and living! Dick thinks more about my emotional health than I give him credit for. I know that part of his intention was a new anniversary date...but it is also something for me to wake up and think about every day. Something to look forward to....even during my less light days.

Eileen and I are off to Stillwater today to look for the perfect dress. There is a special little store by the name of Our Shop that has always put me into fantasy world every time I pass it. We're going in today and fulfilling that fantasy. Simply amazing.

There are days that marriage feels challenging and quite frankly, difficult. Then the person that 'chooses' to be with you through better or worse and with sickness and in health, tells you he would do it all over again. I choose you too, my knight on his white horse coming in and making my world...just that much better.

Special Prayer Request

2008-01-22T15:14:00.000-06:00

Hello All.... Special prayer request if I could.

My sister, Margaret, is currently undergoing emergency gallbladder surgery. Her gallbladder has been bothering her as of late and she was scheduled for an ultrasound. She didn't quite make it to that appointment.

If you could please put her in your thoughts and send out healing light, I would really appreciate it.

Thank you.

It's a Go!

2008-01-21T12:13:00.000-06:00

Hurray!!!! My white blood count has gone up significantly since Thursday. I am presently being infused and am jubilant!

Evidently, sitting on my ever widening behind this weekend was a good thing for those finicky white blood cells. In frustration, after my treatment refusal last week, I did a lot of research on what causes white blood counts to go down. Can you believe exercise and activity? While in Palm Springs I was very active and swimming laps non-stop for 40 minutes each day. On top of that I was keeping up with very energized people till all hours. (Note to self; be sure to not schedule a trip with Sue & Bil just prior to treatments...lol)

I cannot take complete credit for being able to enjoy sitting in this infusion chair for the next five hours. I received so many kind and healing notes and phone calls since my last post. Once again, your prayers and positive energy have lifted me. Thank you so, so much!

A short story to share with all of you. More evidence that early colorectal screening awareness is so crucial. One of the nurses just told me that she met a seventeen year old last week that is undergoing treatment for colon cancer. Seventeen years old!

Not that I want your prayers and positive energy being diverted to another person, but, if you could, please send healing thoughts and prayers to that young person and family. One should not question God's ways....but goodness.

As much as I would like to continue typing, the benadryl that is slowly dripping into my body is taking its effect on my ability to concentrate. Guess this will be it for now....as I am....starting to get.....very sleepy.

Bummed Out

2008-01-17T21:03:00.000-06:00

We're back. We left the warmth and fun of California yesterday. I spent just enough time at home to go through the mail and then I was once again out the door. I drove directly to Rochester, settled into my hotel room and began the mental preparation of receiving treatment today.

As always, Dr. Grothey greeted me this morning with a smile and a short chat about my recent travels. I was psyched and ready to go for the infusion. Unfortunately, his sad eyes looked at me and told me today's treatment was a no go. My white blood counts are far too low. I almost begged him to let me proceed with treatment. He checked my counts again and contemplated...nope, not today. It's just too risky.

When I called Dick to deliver the bad news I couldn't hold back my tears. This stuff really scares me at times. It's such a sobering reality...especially after the fun and sun.

I am scheduled to go back on Monday. Honestly, I don't know how my white blood counts can improve over the next five days. Couldn't they build my counts before treatment so that I don't have to go through this disappointment? Just what is it I'm supposed to convince my body to do before Monday morning?

Right now I am bummed. I know tomorrow will be a new day and I will see things from a fresher perspective.

Montel Show Video

2008-01-05T08:09:00.000-06:00

Alas, I have turned into a computer geek. I have learned to convert a .vts file to a movie file, remove the commercials and publish our appearance on the Montel show. Unfortunately, the file is so large, I have had to separate it into three sections.

If you look to the right of the page, you will see the Montel logo and three separate files. Simply click on the the first to watch the beginning of the show and follow with the additional two files.

The 'In My Daughters Eyes' slide show has been moved down to the bottom of the page. It was just getting too visually busy on the top of the page.

I am feeling worn today. One would think that I would be on a high after yesterday's good news. I think I've been holding fear and apprehension inside all week. It caught up with my body today. It is something what a body can hold...and then feel when comedown is allowed.

We leave tomorrow for a trip with friends in Indian Wells, California. It will be great to be able to just hang at the pool, read a few good books and enjoy the company of wonderful people. A much needed rest for all of us after the stress of the holidays and waiting for test results.

You are all so special to me. I know your prayers and positive thoughts have carried me through all of this. I also know I have a guardian angel keeping close watch. There was a whisper in my ear as I was awaking one morning last week. The voice let me know that all would be good. I thought I was dreaming, but it has proven to be true. Praise the Lord.

Believe....I believe...I believe...I believe!

It's Good News!!!!

2008-01-04T16:39:00.000-06:00

I received the call at 4:20 p.m The news is good.

There is no progression, no new growth. I am stable.

Dr. Grothey sounded very positive. He could not give me more detail, as the scan readers are purists and do not have prior Mayo scans to compare to.

We will have another scan after the next infusion or two, this way we can compare identical equipment.

So...the waiting was good news!!!!

Thank you so much for your prayers, love and support.

Again, you have raised me up.

No Updates from Mayo

2008-01-03T15:29:00.000-06:00

We are all anxious for results on the CT scans from Monday. I am receiving well meaning emails and phone calls from friends and family. So far....no news.

I have left two messages with Dr. Grothey. No response as of yet.

I will update my sites as soon as I know something.

Let's hope that at this point no news is good news.

Thank you for your interest and concern.

Much love,
Kathy

Farewell 2007

2007-12-28T10:00:00.000-06:00

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.

Christmas Is Coming

2007-12-20T11:33:00.001-06:00

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.

Montel - Thank You

2007-12-14T10:48:00.001-06:00

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.

2007-12-13T08:08:00.001-06:00

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.

It's a Wonderful Life

2007-12-10T09:01:00.000-06:00

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.

Sneak Peak

2007-12-08T08:46:00.001-06:00

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.

We're Back!!!

2007-12-07T11:27:00.000-06:00

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.

It's Really Happening!

2007-12-06T06:50:00.000-06:00

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.

Montel Williams

2007-11-30T17:53:00.001-06:00

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.

2007-11-27T22:43:00.000-06:00

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.

2007-11-13T14:41:00.001-06:00

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..."

Return From Girls Trip

2007-11-12T11:45:00.000-06:00

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.

2007-11-05T11:04:00.001-06:00

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.

2007-11-02T10:55:00.002-05:00

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.

2007-11-02T10:55:00.001-05:00

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.

2007-11-02T10:54:00.002-05:00

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!

2007-11-02T10:54:00.001-05:00

TUESDAY, OCTOBER 02, 2007 11:30 AM, CDT

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

2007-11-02T10:53:00.001-05:00

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.

2007-11-02T10:52:00.002-05:00

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.

2007-11-02T10:52:00.001-05:00

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.

2007-11-02T10:51:00.002-05:00

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.

2007-11-02T10:51:00.001-05:00

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.

2007-11-02T10:50:00.000-05:00

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!

2007-11-02T10:49:00.002-05:00

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.

2007-11-02T10:49:00.001-05:00

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.

2007-11-02T10:48:00.000-05:00

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.

2007-11-02T10:47:00.000-05:00

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!

2007-11-02T10:46:00.001-05:00

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!

2007-11-02T10:45:00.002-05:00

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?

2007-11-02T10:45:00.001-05:00

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.

2007-11-02T10:44:00.002-05:00

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.

2007-11-02T10:44:00.001-05:00

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.

2007-11-02T10:43:00.002-05:00

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.

2007-11-02T10:43:00.001-05:00

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......

2007-11-02T10:42:00.002-05:00

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.

2007-11-02T10:42:00.001-05:00

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.

2007-11-02T10:41:00.002-05:00

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.

2007-11-02T10:41:00.001-05:00

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.

2007-11-02T10:40:00.003-05:00

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?

2007-11-02T10:40:00.001-05:00

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....

2007-11-02T10:39:00.001-05:00

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.

2007-11-02T10:38:00.000-05:00

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.

2007-11-02T10:37:00.002-05:00

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.

2007-11-02T10:37:00.001-05:00

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.

2007-11-02T10:36:00.002-05:00

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.

2007-11-02T10:36:00.001-05:00

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.

2007-11-02T10:35:00.001-05:00

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?

2007-11-02T10:34:00.000-05:00

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.

2007-11-02T10:33:00.000-05:00

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.

2007-11-02T10:31:00.001-05:00

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.

2007-11-02T10:30:00.002-05:00

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.

2007-11-02T10:30:00.001-05:00

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

2007-11-02T10:29:00.000-05:00

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.

2007-11-02T10:28:00.004-05:00

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.

2007-11-02T10:28:00.003-05:00

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.

2007-11-02T10:28:00.001-05:00

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.