The results of the bone scan are in and they are good! The bottom line is the Radiologist used words like “marked improvement” and “no noticeable activity” and regarding my spine and neck “no lesions can be found” – OK, it’s not “you’re cured” but compared to the slides from last February this is awesome!

Next steps are; blood test 1/27, blood test and Dr. meeting 3/3, updated bone/CT scan 5/12So it’s just watch, wait and hold your breath!

My life had basically become a serious of ups and downs, that in and of itself does not make me different than any of you. What I have realized recently, however, is that I have become a master in managing the highs and lows of this battle. Give me bad news; I’m Teflon, it just rolls off me. Give me good news; same reaction, and therein lies the conundrum.

I should be jumping up and down, but I’m not. I’m numb. It’s like living on death row, I just got a “stay” from a judge, not the Governor. Don’t be mistaken, I’m not depressed, this is really good news, I just wish I could relax for a minute and enjoy it. After all. I could have the poison of Chemo running through my veins right now!

After the news Thursday, the weekend was packed with activities. It goes without saying, it flew by!

Friday night was a rather quiet night at home. My Dad came over from St. Louis. This was planned before Chemo was postponed, so we figured we would be a good opportunity to celebrate a little since we haven’t had much good news lately. We didn’t do a whole lot, sometimes just being together is enough. He hasn’t said so to me, but I think this is very hard for him. He puts on a good face when we’re together but each time we say our good-byes, he gets emotional. One can only imagine if something happened to one’s child, how difficult it would be.

Saturday was a “full” day. I worked out, we had breakfast before Dad left, then: grocery shopping, a hair cut, cleaning, a basketball game, Mass, and then guests for dinner. The meal was great, the company was better. The day started around 7:30 and we finally got into bed about 12:30am.

Sleep – a little; Sunday was disc golf at 7:30 followed by a little downtime at home then I was off to “the outdoors”. My brother-in-law and I went to meet a good friend at the land he just purchased. It’s about 30 minutes from here, half way to Lawrence, KS. The 30 acre piece of property is 100% trees/woods. The southern border is the Union Pacific railroad, with the Kansas River on the other side of the rail line. There are two spring fed creeks that dissect the property and many, many hills and ravines throughout. Deer, turkey, raccoons, squirrels are more than plentiful. Right now there is no direct access but the hike into the property is rather short.

The views of the river and the tens of thousands of farm land on the south side of the river are breathtaking. OK, I realize this is not the coast of California or a beach in Florida, this is Kansas folks. We are accustomed to acres and acres of corn and wheat. Our subdivisions are built on former farm land. There are very few hills and the trees we experience were planted when the house was constructed. So spending three hours planting tulips (500+ bulbs) and traversing all four corners of the property was somewhat therapeutic. We found a great sandy beach along the river bed and began planning the disc golf course the will begin to sprout sometime this spring. It will be a wooded killer!

Before getting cancer this was a dream I shared with Mary many times. I wanted some property, nothing fancy just a place to camp and goof off with my son, friends and family. A place to go, a place to get away from the hustle and bustle of everyday life. Now things are different. At the end of our excursion I realized there is no getting away. Cancer is with me everywhere, every minute, everyday. As much as I tried to suppress the thoughts throughout the afternoon, it’s there, like always, right at the surface. Perhaps as we make further trips to build the course, to clean up to fish and hang out at the “beach” it will be come easier to “let it go” for periods of time. I can only hope.

When I came up with the name “Faith-Love-Hope-Win” it was both something that just popped into my head and something that I considered carefully. As I remember it, I was driving to work, in traffic, on the highway. A homily at Mass in the days preceeding had included references to “Faith, Hope and Love”. The passage might have been this one: 1 Thessalonians 1:3 We continually remember before our God and Father your work produced by faith, your labor prompted by love, and your endurance inspired by hope in our Lord Jesus Christ. Whether this is the exact passage or not, my point is, a biblical passage was the inspiration, the order of the words however, were not random.

To me, faith is first and foremost. In addition to faith in God or faith solely from a religious perspective, it includes faith in your doctors, medicine, family, friends neighbors, etc. Faith that even in the midst of being diagnosed with this terrible disease, something good will come of it. As I pondered faith, I quickly realized that faith alone will not accomplish the goal ahead but it is the foundation which will enable us to beat this disease – to Win.

In my mind, Love had to come next – the love for one’s spouse, children, God, family, friends etc. It is an emotion we think about a lot but say to each other far too infrequently. In my life for example, I love my brother in law. My wife aside, he is one of the people I am closest too. He is truly one of my dearest friends. I have never said to him “I love you”. I realize that there are many other people in my life that I love, but I also don’t tell them nearly enough, or at all. The battle I wage cannot be successful without them and their love.

Finally, there is hope. Hope, without it, we as humans would struggle to survive. Placing the cancer fight aside, Hope is what gets us up in the morning and Hope is what allows us to sleep well at night. Hope for a cure, hope for surviving another day, another week, another year and beyond. There are times during this journey that Mary and I have struggled to keep hope alive. This struggle has been one of the most difficult moments of our lives. Fortunately, we have always managed to find the inspiriation, spirit, faith and love to keep the hope alive.

So if you ever wondered about the creation of FLHW, it was not just a random grouping of words, but the foundation of our mission and our journey.
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From the Oncologist yesterday:
– My PSA on 12-15 was 7.8, my PSA from 12-28 was 7.4
– my lymph nodes are now clear. There was one small area near my heart on the February CT scan, Fridays CT scan was clear.
– the Oncologist looked at the February x-rays versus those last Friday and noticed many areas have cleared up, however the radiologists report was missing the comparison between the two, we expect that today or Monday.
> Again, Chemo is on hold. I will now have blood tests once a month and meet with the Oncologist every other month. Assuming we can keep the PSA steady (or declining?), the chemo will remain on hold.
As soon as we get the official radiologist report I’ll post here.
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Because I feel I don’t say it enough – I love you and I really believe that all of your prayers have been a major force in my battle. With all my heart, I thank you.

I don’t know the details -(I’m on a conference call at work) but Mary talked to the Oncologist office and NO CHEMO for now!!!

My PSA number went down slightly and apparently my Radiology report was improved from February!!!

More details later – this will definitely change the style of haircut I get on Saturday!!!! Perhaps a shag vs. the Marine Corp style I was considering!!!!

If you don’t believe in FLHW – you might want to reconsider! I am not saying that later we won’t find ourselves in the same place, facing chemo, but I myself am a true believer in the power of Faith-Love and Hope!!!

I don’t have much to add – here’s to hoping 2006 is a much happier and healthier year than 2005!

First, an update on Wednesday. We met with Dr. Sheehan for about an hour and left feeling blessed we found another good one! I won’t go into all the details, just the conclusion. We are proceeding with chemotherapy. The schedule looks like this:
> Today: I have a bone scan and an MRI at 11:15. This is not a big deal, unless you consider having radiation injected into your body something of concern!

> Jan 6th: we have to meet with the Nurse Practitioner and the Financial Manager at the oncology office. We were very impressed with the fact the doctors office actually calls the insurance company and gets the details of all the expenses we can expect to incur. As for the NP, they will go over the schedule, procedure and side effects. Here is what we already know from the doctor and research we did:
– the treatments are once every three weeks for 6 to 10 treatments
– the day before, the day of and the day after treatment I’ll have to take oral steroids. (helps the bone white blood cell count)
– fatigue does not happen immediately, usually 3-5 days later.
– 10-14 days post treatment is a critical time as white blood cell count is at it’s lowest (white blood cells help fight infection)
– hair loss will likely occur
– nail discoloring might occur
– mouth sores are possible
– there are other drugs I may be given; anti-nausea and possibly Nuelasta. One of the side effects of the later is temporary bone pain so they might have to give me Vicatin. Nothing like taking a drug to deal with complications from a drug and then taking a third to deal with the second! Isn’t modern medicine grand! Yes, I know, at least there are options!!

> January 9th (noon) treatments begin. Apparently it is a 90 minute IV drip and again there are no immediate side effects. I really wanted to start this upcoming week. I see no reason to put this off any longer. If we are going to do this, let’s get it started.

So for now it looks like our trip to the beach (Spring Break) and Italy are on hold. However, that is not to say we won’t try to work them in between treatments!
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While we waited in the Oncologist office there were two men who came into the waiting area. One was in a wheelchair and I would guess in his mid 70’s. The other man was probably in his mid 60’s. Both were going through Chemo and looked very frail. It was just a reminder of how abnormal this condition is for a 42 year old……….I think a blue FLHW bracelet will fit perfectly upon each of their wrists.

Christmas has come and gone and aside for being spoiled by my wife (once again) I must have missed it? I guess being a little bit distracted, caused me to miss it. Was I being selfish not to stop thinking about me for a few minutes? At times I question my constant selfish thought, but I’m convinced there is no right answer. Mass was not as emotional as I thought it would be.
The church was bursting at the seams and in retrospect, I think because of the number of children and my family being there, it was much easier than I anticipated.

For the first time in over six months we had a meal containing red meat. For the past six or so years our traditional Christmas dinner has been a beef tenderloin dish served with a of these incredible roasted red onions in a balsamic vinegar glaze. As with past years, it was incredible! I savored each and every bite. I must have consumed at least eight ounces! Want the recipe? Just let us know…..

What lies ahead tomorrow is perhaps one of the most frightening days we will experience since this ordeal began. Last week with Dr. Davis, our disappointing trip to Houston last April, the initial meetings with Dr. Davis after the biopsy and x-ray; these were all bad in their own right, but each offered choices and hope. I am not sure what to expect tomorrow – Chemo might be the last treatment option for now….perhaps? I pray that once the treatments begin it is a semi-painless experience. I wonder how I’ll look without hair? What other side effect will I experience?

I started reading a book on cancer survivors this morning. It was published by the Lance Armstrong Foundation and a gift from my niece (a wonderful young women). As I reflect on the situations that Lance and the young women in first story experienced, I’ll repeat something I have said here before; I would trade places with these people in a heartbeat. In their cases they began treatment immediately, versus our current ten month drama. No one wants to have cancer but once you do, treating it and attempting to be cured immediately are critical. There is no cure, my treatments just keep putting off the inevitable.

Why me? Why now? Why oh why God are you testing me in this way?

On April the 4th I wrote about a young man named Mark Holt. We met briefly at a mutual friend’s bachelor party. Mark lost his battle with Hodgkin’s and passed away on Monday. I find myself sitting here at my computer, fighting back the tears. I met this man one time and only spoke with him for about an hour, but I felt like I knew him forever. We discussed the emotional stages of cancer and how he had exhausted most of his options. He was remarkably upbeat. We left promising to stay in touch (we lived less than a mile from each other), but besides a few emails, never met again. I have felt very comfortable from the beginning that help is right there if I need it. I pray at this time that he was surround by a support group of similar strength. My heart goes out to his wife and his family. Mark would have turned 33 this Friday.

We just left Dr. Davis, as I said before, he’s an awesome doctor, I challenge you to find one with a better “bed side manner”.

After discussing my situation with him we agreed that the next step should be Chemo. Radiation is not required at this point because my back pain is not constant, not debilitating. Additionally, radiation is used as a pain reliever, not a curing agent.
We discussed Mayo, Sloan-Kettering, etc. with Dr. Davis but Mary and I are not real comfortable with those options. The reasons are this; 1) the “standard” next step is chemotherapy using a drug called Taxotere. This can be administered locally here in Kansas City. If we went to one of these other facilities it would be to explore any clinical trials. However, as a participant in a trial there is no guarantee I would receive anything other than Taxotere, especially at this stage. A clinical trial is basically a crap shoot, a lottery, a chance we don’t want to take at this point. 2) Based on my case and history, I might not even qualify for the trial.

Given these two items, we are meeting with an Oncologist here locally next week. After that meeting I will have bones scans, CT Scans, possibly MRI’s again and then begin a chemo regiment. The timing of all these events and our schedules for the next several weeks are now in flux. However, nothing happens until after Christmas!!
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One item to note is that there are documented instances where Taxotere has been very successful in managing cancer at my stage! This was news to us both! We are not getting too far ahead of ourselves but finally a small speck of encouragement!

It’s Christmas, the birth of Christ and all that represents, new life, new beginnings etc. and so on. Tomorrow we go see my Urologist to discuss next steps; chemotherapy, radiation, experimentation. Both are full of unknowns; one you look forward to the discovery of and living through, the other you dread and pray to God that it’s ultimate conclusion is one that is positive.

We managed to get through the weekend without issue. We agreed that though it’s not good, we won’t know anything until tomorrow. So it was a “normal” weekend of disc golf (25 degrees and a light snow – it was beautiful).

So, it you are interested, here are the two avenues that lie ahead. This is likely not an either/or, both will be administered:

Radiation therapy: a cancer treatment that uses high-energy x-rays or other types of radiation to kill cancer cells. There are two types of radiation therapy. External radiation therapy uses a machine outside the body to send radiation toward the cancer. Internal radiation therapy uses a radioactive substance sealed in needles, seeds, wires, or catheters that are placed directly into or near the cancer. The way the radiation therapy is given depends on the type and stage of the cancer being treated. Impotence and urinary problems may occur in men treated with radiation therapy. [in my case external beam is about the only thing that will help]

Chemotherapy: Taxotere® belongs to the taxane class of chemotherapy drugs. The active ingredient in Taxotere® is derived from the needles of the European yew tree (Taxus baccata). In 2004, Taxotere®, in combination with prednisone, was FDA approved for the treatment of patients with androgen-independent (hormone-refractory) metastatic prostate cancer. In addition, Taxotere®, in combination with doxorubicin and cyclophosphamide, has been approved by the FDA for the adjuvant treatment of patients with operable, node-positive breast cancer. Taxotere® continues to be tested in clinical trials for various stages of many types of cancer. As a testament to its potential, in 2004 alone the American Society of Clinical Oncology accepted over 200 abstracts of studies with Taxotere® regimens for its annual meeting. Numerous studies are ongoing, that may offer promising new therapeutic options for healthcare professionals and their patients.

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Sounds exciting! As I told Mary last night, I am not scared, seriously. Worried, oh course but I don’t have time for fear.