Change in Blog Address

Please change your address to my blog to http://trooperg.wordpress.com/... Thanks. Gary.

Changing Direction

Got some better sleep last night. Sleep remains one of the greatest challenges for me at these hospital stays. It is simply nearly impossible to get good sleep when you are checked on every couple of hours for vital signs, getting hooked up or unhooked from chemo, having to constantly pee, etc. That lack of sleep along with the effects of the chemicals catches up and today is the day it seems that fatigue is starting to settle in.

Yesterdays blood draws indicated that my potassium was low so they drew blood again today and my potassium looks to have gotten back to normal overnight.

Today's drug lineup includes Leucovorin, Cytarabine, Sodium Bicarbonate, Zofran, and Decadron. The only new one in this lineup is Leucovorin is a reduced folic acid which is administered following methotrexate where it may "rescue" bone marrow and gastrointestinal mucosa cells from the methotrexate. Leucovorin has only a couple of rare side effects - an allergic reaction and nausea/vomiting.

I am so thankful that Dr. Lee is so good at what he does. He and his partner, Dr. Rovira (who took care of me this week in the hospital), have obviously figured out what it takes to keep things tolerable. Although I know that this will probably be my last posting until next week because of the unavoidable fatigue and not feeling good, there is no doubt in my mind that things would be much worse if not for my doctors and the nurses here at the hospital that carry out their instructions.

I am okay. Just getting to the point where I know from prior experience when things are going to happen. Look for an update sometime next week. Thank you, everyone, for your continued prayers, well wishes and support.

I'll throw out there an idea I had for this blog - because I want it to be valuable to others out there that have cancer, or MCL, or whatever, I would like to make this blog more of an 'open-forum' for anyone that has questions about most anything. Give me ideas to write about, ask me questions, whatever you want would be great - the stories from my life are probably not very interesting, possibly the day-to-day of my cancer isn't that interesting either. Your suggestions for topics would give me something to think about and write about. Those of you that know me certainly might be able to suggest stories I should tell and I'm happy to tell them. But so many of the e-mails I get now are from fellow MCLers and I want to help anyone I can in that group with this blog. I look forward to the challenging subjects you give. And I hope you will.

Quiet Day

Difficulty is the excuse history never accepts. - Edward R. Murrow

 

"I may not be what I ought to be and I may not be what I'm going to be, but thank God I'm not what I used to be!" - prayer from the African American Christian community.  This quote came out of a daily devotions book I read and I found it to be a great prayer - so simple and true.

 

Today has been a great day.  The highlight of the day was an unexpected visit from a local man who was diagnosed with MCL some three years ago.  He and I had exchanged some calls and e-mails but not yet met.  We had a great conversation about our experience with MCL.  I am constantly amazed at the new friends I've gained through this experience.

 

All in all, not much to report today.  In addition to the visit from a fellow MCLer, my parents-in-law dropped in for a nice visit and then my wonderful Kim brought an awesome Pasta Carbonara that she made for dinner.

 

The drug menu today includes Cytarabine, Sodium Bicarbonate, Zofran, and Decadron.  Cytarabine belongs to the group of cancer-fighting medications known as antineoplastics, and specifically to the group of antineoplastics known as antimetabolites. Cytarabine fights cancer by preventing the growth of cancer cells, which eventually results in their destruction.  Cytarabine also suppresses your bone marrow and your immune system.  Unfortunately many healthy cells are also destroyed.

 

Side effects for Cytarabine include: Nausea and Vomiting, the lining of the digestive tract can be damaged causing diarrhea and mouth sores, Ara-C syndrome - Fever, muscle soreness, joint and bone pain, chest pain, rash and eye effects, peripheral neuropathies - loss of sensation in the fingers and toes, bone marrow suppression, toxic effects on blood cells, headaches and fever, Myalgia (aching muscles), malaise, decreased appetite, diarrhea, mouth and anal skin ulceration or inflammation, rash and other skin changes (freckling, ulceration), conjunctivitis, hair loss, pain in the abdomen (stomach area), bone pain, inflammation of the esophagus (tube connecting the mouth to the stomach), inflammation around the injection site, infections, bleeding into the esophagus, stomach or gut, bloody stools and/or vomit, liver disease characterized by jaundice (yellow skin, dark urine, pale stools), chest pain, kidney failure, urinary retention (inability to empty the bladder without medical assistance), lung changes resulting in shortness of breath, excess fluid in the lungs and enlargement of the heart (rare), permanent nerve damage (rare), paraplegia (rare),  and blindness (rare).

 

The rest of the drugs were described and covered before so no need to rehash that.  The great news is that I am doing good so far - the only possible side effect I've had over the last days is some flushing of the face that goes away pretty quickly.

Valet Parking, Reserved Room, Room Service...

“Things that were hard to bear are sweet to remember” - Seneca

So I've decided on a hobby over the last several weeks. In my lifetime I never really had a "hobby" so I am excited to have one in mind now. My hobby-to-be is metal detecting. I'm a long way from doing any actual metal detecting - need to buy a metal detector, which aren't cheap for the type I want to do this hobby. But in the mean time I will be able to do research about places I'll go to find 'buried treasure,' learn techniques, etc. etc. It will be a blast - treasure hunting is right up my alley and it'll be something that the whole family will probably get into doing.

I idea of this hobby was indirectly solidified by a great book I recently read - Raising the Hunley by Brian Hicks & Schuyler Kropf. From Publishers Weekly: The legendary Confederate submarine H.L. Hunley was the first successful underwater warship that is, the first to sink an enemy ship. As chronicled in Raising the Hunley: The Remarkable History and Recovery of the Lost Confederate Submarine, the sub disappeared without a trace in 1864, crippled by a Union ship, and finding it became something of an obsession for many Americans until the vessel was finally brought to shore in 2000. Based on interviews with scientists and historians who studied the Hunley's remains, Charleston, S.C., Post and Courier journalists Brian Hicks and Schuyler Kropf reconstruct the sub's final voyage in this dramatic slice of Civil War history.

I've been reinstalled in my usual room at St. Anthony's North hospital. They are very good to me here - the room I have is the solitary one that has a view to the East and windows that span the wall. The room itself is the largest one they have, which is not important to me but is certainly a nice of the folks here. The room itself is appointed with the usual hospital room items - a couple of chairs, a rolling cart with drawers, a rolling table. To that I've added my small refrigerator and one-cup coffee maker. As much of a hard time as I get for the refrigerator, I can no longer eat the hospital food. Not because of the food itself but because of the smell of the kitchen that is on everything that comes from there. This comment will be akin to the boxer dropping his guard, but I'm like a pregnant woman who can't stand a smell - even well after the first time they smelt it.

The real beauty of my room is the view. Facing towards the east I am treated to the sunrise, the coming and going of Flight for Life helicopters, and trees. The trees, odd as this may sound, are the most important thing to me. Since the beginning of this fight I've spent a great deal of time to having to be still in a bed or chair. I have found that watching the wind in the trees is both distracting and relaxing. The sunrise reminds me, as it has every day since her birth, of the birth of my daughter which came with the most beautiful of sunrises I've ever seen.

Nobody can go back and start a new beginning, but anyone can start today and make a new ending. - Maria Robinson

This round of chemotherapy will mark the halfway mark of my treatment. As I have said, I am truly thankful that I was given this challenge - it truly is probably the only way I would have decided to 'start today and make a new ending' as the above quote says. I've read that cancer often becomes a catalyst for individuals who have it - inspiring some to work for cancer causes others to change careers and on and on. I feel fortunate to have had found the woman of my dreams already, to have a daughter that I wouldn't change a thing about, even to have a dog whom I hold in high regard. In addition to that, although later in life, I was lucky enough to find the work that I know I was 'wired' to do in becoming State Trooper.

The most inspiring change is the opportunity to work for cancer causes. I am excited about working towards supporting police officers, fire fighters, and emergency medical service personnel diagnosed with cancer. I've been the beneficiary already of such a great outpouring of generosity that is helping me! It is going to be such a blessing to be able to contribute to creating that sense of support to emergency personnel in the future. For anyone who is reading this blog that has experience with and ideas for fundraising for cancer victims - I'd love to hear your suggestions.

Aside from my plans specific to emergency workers with cancer, I felt compelled to join Team in Training (something I've threatened to do over the years) and complete a triathlon next May. My 'training' right now is a little limited but I like the challenge.

A sure sign that I'm on a lot of drugs... I already forgot to tell you about one I started taking yesterday and will continue to get during my hospital stay. Sodium bicarbonate, also known as baking soda, is used to relieve heartburn, sour stomach, or acid indigestion by neutralizing excess stomach acid. When used for this purpose, it is said to belong to the group of medicines called antacids. It may be used to treat the symptoms of stomach or duodenal ulcers. Sodium bicarbonate is also used to make the blood and urine more alkaline in certain conditions and this is what it is prescribed to me for. In my case the sodium bicarbonate is given in anticipation of the Methotrexate (information on that follows) because a combination of urine alkalinization and fluid load increases the rate of elimination of the Methotrexate.

Side effects can include: Frequent urge to urinate; headache (continuing); loss of appetite (continuing); mood or mental changes; muscle pain or twitching; nausea or vomiting; nervousness or restlessness; slow breathing; swelling of feet or lower legs; unpleasant taste; unusual tiredness or weakness; increased thirst; and, stomach cramps.

Today's lineup is limited to Sodium Bicarbonate, Methotrexate, Zofran, and Decadron. Methotrexate belongs to the group of medicines known as antimetabolites which means it is capable of blocking the metabolism of cells. (Metabolism consists of the production and destruction of important components of the cell as well as the production of energy for use by the cell.) Methotrexate is an anticancer drug used in the treatment of lymphoma and certain forms of leukemia. It is also given to treat some forms of cancers of the uterus, breast, lung, head, neck, and ovary. Methotrexate blocks an enzyme needed by the cell to live. This interferes with the growth of cancer cells, which are eventually destroyed. Since the growth of normal body cells may also be affected by Methotrexate, other effects will also occur.

Methotrexate can be well tolerated, but also can cause severe toxicity which is usually related to the dose taken. Along with their needed effects, medicines like Methotrexate can sometimes cause unwanted effects such as blood problems, kidney problems, stomach or liver problems, loss of hair, and other side effects. These and others are described below. Also, because of the way these medicines act on the body, there is a chance that they might cause other unwanted effects that may not occur until months or years after the medicine is used. Side effects include: black tarry stools, blood in urine or stools, bloody vomit, diarrhea, joint pain, reddening of skin, itching or hives, swelling of face or hands, swelling or tingling in mouth or throat, chest tightness, trouble breathing, blistering/peeling/red skin rash, blue lips or fingers, seizures, numbness, stomach pain, swelling of feet or lower legs, sores in mouth and on lips, loss of appetite, nausea or vomiting, blurred vision, confusion, convulsions (seizures), cough, pinpoint red spots on skin, shortness of breath, unusual bleeding or bruising, back pain, cough or hoarseness accompanied by fever or chills, dark urine, dizziness, drowsiness, fever or chills, headache, lower back or side pain accompanied by fever or chills, painful or difficult urination accompanied by fever or chills, unusual tiredness or weakness, yellow eyes or skin, acne, boils, pale skin, and skin rash or itching.

This medicine may cause a temporary loss of hair in some people. After treatment with Methotrexate has ended, normal hair growth should return. After stopping this medicine, it may still produce some side effects, to include: back pain, blurred vision, confusion, convulsions (seizures), dizziness, drowsiness, fever, headache, and unusual tiredness or weakness.

Zofran is used for the prevention of nausea and vomiting caused by radiation therapy and chemotherapy for cancer, and, in some cases, to prevent these problems following surgery. Zofran blocks serotonin receptors known as 5HT3-receptors. 5HT3-receptors are found in the neurons (nerve cells) of the gastrointestinal system, and also in the area of the brain that controls vomiting. Chemotherapy agents release serotonin from gut cells, which stimulates these receptors and causes vomiting. Zofran's blockade of the 5HT3-receptors helps prevent and treat this nausea and vomiting. Side effects may include: Blurred vision, constipation, diarrhea, dizziness, fatigue, headache, anxiety, difficulty breathing, difficulty urinating, malaise, change in liver enzymes, flushing, hiccups, chest pain, tremors, uncontrolled muscle movements, change in muscle tone, drowsiness, fever, headache, itching, low blood pressure, shivers, slow heartbeat, chills, and abdominal pain with cramps, dizziness, fatigue, and general weakness. Not bad for the drug to help offset nausea and vomiting huh?

Decadron is a corticosteroid that reduces swelling and inflammation. Decadron is also used for the prevention of nausea and vomiting. Side effects include: abdominal distention, allergic reactions, blood clots, bone fractures and degeneration, bruises, cataracts, congestive heart failure, convulsions, "cushingoid" symptoms (moon face, weight gain, high blood pressure, emotional disturbances), excessive hairiness, fluid and salt retention, general feeling of illness, glaucoma, headache, vomiting of blood, hiccups, high blood pressure, high blood sugar, hives, increased appetite, black or tarry stools, puffing of the face, increased eye pressure, increased pressure in head, increased sweating, increases in amounts of insulin or hypoglycemic medications needed in diabetes, inflammation of the esophagus, inflammation of the pancreas, irregular menstruation, swelling of the ankles or feet, prolonged sore throat or fever, loss of muscle mass, low potassium levels in blood (leading to symptoms such as dry mouth, excessive thirst, weak or irregular heartbeat, and muscle pain or cramps), muscle weakness, nausea, osteoporosis, peptic ulcer, breathing difficulties, mental/mood changes, perforated small and large bowel, poor healing of wounds, protruding eyeballs, thin skin, tiny red or purplish spots on the skin, torn tendons, vertigo, and weight gain.

Think I will wrap it up for today. If you are so inclined, please think of my oncologist's mother as she recovers from a serious surgery. I'll have more tomorrow.

The hard - we shall do today, the impossible - we shall do tomorrow

Absence from those we love is self from self - a deadly banishment. - William Shakespeare

I want to apologize for the long delay in updating this blog. The realization that this process went from being something difficult to the most difficult thing I've had to do was cause for some reflection. And as I again sit in a recliner at Dr. Lee's office being tended to by the best staff I can imagine exists, getting that Rituxan that begins my fourth chemotherapy cycle, I'm provided with a great opportunity to end the posting drought.

Thought I'd list the purpose and side-effects of each drug I get, as I get them, in this 'Course B' that I'll be getting this week - just for grins. So today is the Rituxan. Rituxan's purpose, as I understand it, is to interfere with the growth of cancer cells and slow their growth and spread in the body. Tumor cells (like most normal cells) have receptors on their surfaces. Molecules on the outside of the cell can attach to these receptors. When they do, they can cause changes to occur within the cells. One receptor, present in more than 90% of B-cell non-Hodgkin's lymphomas, is called CD20. Molecules that attach to CD20 can affect the growth and development of the tumor cells and, sometimes, the production of new tumor cells. Rituxan is a man-made antibody that was developed using cloning and recombinant DNA technology from human and murine (mice or rat) genes. Rituxan is thought to attach to the CD20 receptor and cause the tumor cells to disintegrate (lyse). In some non-Hodgkin's lymphomas, it also prevents the production of more tumor cells. Rituxan was approved by the FDA in 1997.

The most common side effect of Rituxan is a constellation of symptoms (fever, rigors and chills) that occur during administration of the first dose of drug. More than 80% of patients experience these side effects, and it is severe in 4-7 out of every 10,000 patients. The side effects appear only 40% of the time with the second dose of drug and decreases even less frequently with the subsequent doses. Other common side effects related to Rituxan are nausea, hives, fatigue, headache, itching, difficulty breathing due to bronchospasm, a sensation of swelling of the tongue or throat, runny nose, vomiting, decreased blood pressure, flushing, and pain at the site of tumors.

After Rituxan is administered, large numbers of tumor cells are immediately destroyed (lysed) and eliminated from the body. In 4-5 out of every 10,000 patients the products from the dead cells cannot be eliminated quickly enough and a syndrome called tumor lysis syndrome occurs. This is characterized by a rapid decline in kidney function and a sudden accumulation or decrease in minerals such as potassium, calcium and phosphate to dangerous levels. Tumor lysis syndrome occurs when the size of the tumor or the number of tumor cells circulating in the blood is large, usually within 12-24 hours after the first dose of Rituxan.

Irregular heart rhythms and infection are two other rarely-occurring side effects that may be severe. The irregular heart rhythm usually begins soon after the administration of the drug, while infection may develop from 30 days to 11 months after the end of therapy.

Severe decreases in red or white blood cells and platelets may occur rarely with Rituxan therapy. Generally, Rituxan is avoided in the presence of active significant infections.

Rituxan therapy is not recommended if there is an allergy to mice or rats since Rituxan is made in mice or rats and may contain minute amounts of rat or mice proteins that can lead to severe allergic reactions.

Other than that, Rituxan is pretty "low-key." Rituxan is pretty good to me. My most severe reaction was on the first time. And, as I said long ago, I take everything relative to other experiences I've had - so Rituxan is a walk in the park compared to the excitement to come this week in Course B. Getting the Rituxan takes about 3 to 4 hours, depending on reactions. Once I am "done" with the planned eight chemotherapy cycles that I have to be hospitalized to do, I will continue to do Rituxan for about two years.

My last several weeks have not been bad. The lack of writing to the blog was more the result of spending the time recovering, thinking, and being with family. On the recovery front - it took me until just a few days ago to get my blood counts back into the 'normal' reference ranges. Proof that these rather expensive drugs really are doing something. Speaking of 'proof' - last Monday I underwent a PET/CT scan. The PET/CT scan machine and scan image (not mine) looks like this:

Positron Emission Tomography (PET) and Computerized Tomography (CT) are both standard imaging tools that allow physicians to pinpoint the location of cancer within the body before making treatment recommendations. The highly sensitive PET scan detects the metabolic signal of actively growing cancer cells in the body and the CT scan provides a detailed picture of the internal anatomy that reveals the location, size and shape of abnormal cancerous growths. Alone, each imaging test has particular benefits and limitations but when the results of PET and CT scans are "fused" together, the combined image provides complete information on cancer location and metabolism.

A PET scan is completely painless and has no side effects. After fasting for 4-6 hours, you receive an injection of a trace amount of radioactive glucose, which is distributed throughout the body. About 30-70 minutes after the injection, you empty your bladder, then lie down on a scanner bed. Images will be taken of your body as you lie still on the scanner bed. About the only thing I could imagine being difficult is if a person is claustrophobic.

You don't learn of your results until you see your oncologist, which for me was this last Friday. My results show that the cancer cells are, for all intensive purposes, gone/nearly gone. That, of course, is good news. Doesn't change the plan to do eight cycles or anything, but it does show that things are working. Although it is definitely cause for thanks to God for the progress, and thanks to all those who are supporting and treating me, we are not out of the woods yet. In fact, being out of the woods will be a LONG time coming - five years of not relapsing after this treatment is all done will be a true milestone to celebrate. But this PET/CT documentation that progress is being made is outstanding news. The unfortunate thing is, mantle cell lymphoma (MCL) is a tenacious son-of-a-gun and likes to come back.

That said, that tenaciousness is the reason I am going for the full eight cycles of this R-Hyper CVAD chemotherapy. The theory being, again as I understand it, to make the body 'forget' all about MCL by bombing the crud out of it - beating up the bone-marrow that produces all your cells to that point. Anyone who saw me at the beginning knew that the drugs were doing something - the very first cycle causing my visible tumors to disappear and changing my actual appearance to something closer to what I normally look like.

That sums up the 'recovery' part of the last few weeks that I've been absent from the blog. The thinking and reflection over the last weeks has been, well, interesting. Interesting for the reasons that I'm being challenged, that I have really begun to miss and think about my vocation as a state trooper, that I am beginning to formulate and implement the changes this experience is causing in my thinking and way of living, and that I find myself woefully inadequately equipped to express my gratitude to the incredible outpouring of support I am getting.

Related to thinking, my experience with chemotherapy has been many things already for me. And one of those things has been the realization that man has, through the use of chemicals/drugs, found a way to alter humans. You can literally feel the change in my opinion. I guess I shouldn't be so surprised - after all, I have occasion to arrest people who have turned to using drugs whose loved ones say they only recognize them because of the physical resemblance of the person in handcuffs to the person they once knew. But now I have a personal experience. I think I'm still recognizable to those who know me, but I am without a doubt changed.

I think some of that change isn't just because the drugs are designed to work on a person's DNA, but because having cancer gave me time I never would have had just laying or sitting around unable to do much else but think. That kind of focused thinking, where you can't do anything else, proved to be a powerful thing for me. Something that recurred during these last few weeks for me was a sense of the mind going from an orderly and controlled thing to a complicated and utter jumbled mess. The strangest part of that for me being the visualization of being able to "see it" as if I was looking at a representation of the thoughts. That transition from orderly (the way I like things) to a mess was a little disconcerting at first because I felt compelled to solve it quickly.

What I figured out is that it didn't need to be solved quickly. In fact, it didn't need to be solved at all. Then this exercise became fun because what it feels like is that there is this discombobulated puzzle that pretty much "looks like" a junk pile of objects that represent everything - ideas, fantasies, plans, things remembered, things that I'd forgotten... - and one by one I take those things and they get put back in their place. What was originally difficult for me was an anxiety I felt because I'm one that has a place for those things and something had happened to ruin that order. My "memory palace" had been blown up.

In the early 90's I had the fortune, through a family member, to have dinner with Dominic O'Brien. Dominic was at the time, and has been several times since, the World Memory Championships winner. As a result of that dinner I had a few more opportunities to talk to him and learned the concept of creating a memory palace which has served me well throughout my life. Many of you reading have likely heard of the memory palace idea and probably use it as a memory device. If you can imagine all that information put into a unorganized pile all of the sudden, you can understand my initial cause for alarm. Lest anyone is worried, I'm no crazier than I was before.

I truly miss my work. I have been doing a few things for my work as I was granted the opportunity to work 'light duty' but I miss being in a patrol car and doing the work of a State Trooper on the roads of the county I live in. It is truly a job like no other and all of my brothers and sisters in law enforcement understand how I miss it. Most all of those that I know in the profession start to feel the need to get back to work towards the end of their weekend (I know I almost always did). To be away this long is torturous.

It has been nice, however, to be around family and friends as much as I have been. Granted, I'm often not able to be around anyone because of my lowered immunity or not feeling good, etc. But even when I'm 'sick' I am still around and it is nice to just hear my daughter playing. I am incredibly blessed with the wife and daughter I have - it will always bother me most to think about the possibility that I might not be there for them someday. That is by far the hardest part of having MCL I think - the knowing that the average statistic is against a person and that that translates to things like not being there to answer your daughter's questions in life or sit on the patio with your spouse in retirement. I am so thankful to be taking action against this disease.

Well, I'll wrap up here. My Rituxan dose is done and I am going to enjoy the rest of this day because tomorrow starts the real fun at the hospital. I will be posting regularly again - thanks for waiting for it.

Young Man, You Need Hair

Yesterday afternoon I went for a stroll, passing by the nurse's station with my IV stand asking which of two major roadways outside the hospital would be better for a jog. In reply, the nurses suggested one over the other but said that I would likely be picked up by authorities - told them I had a pass for that. I didn't really make it out of the hospital, opting instead to walk each floor to see what was where - for no particular reason, I had yet to visit the second floor. As I passed one room an elderly man yelled out from his bed "Young man, you need hair!" Given that invitation I sat in this gentleman's room and learned that he was a Russian who had been a part of the 322 Rifle Division of the Red Army in World War II.

The 322 Rifle Division was involved with liberating the Auschwitz concentration camp on January 27, 1945. This gentleman was yet another humble reminder to me about people who had it bad. He described everything that they found as they liberated the camp and although I am somewhat familiar with World War II history because of my Dad's involvement as a bomber pilot - this amount of detail that I learned probably isn't recorded anywhere.

The part of his story that was so sad was that his son was a Russian prisoner-of-war held in one of Auschwitz's camps. Ten days before the liberation the Germans apparently began evacuating the prisoners to another camp by way of death marches and this gentleman's son was amongst that group and died on the march. In spite of the depressing facts, the talk was a good one. Made all the better when I learned from a nurse I passed as I left that this gentleman doesn't have any visitors.

I then returned to my floor via the stairwell, carrying my IV tree, just to mess with the staff on my floor.

My room is the talk on the floor because of the refrigerator that Kim's parents bought as a gift for me. I'm again in the "suite" with a great view and pretty good size. One of the first orders of business when I got here to the hospital was a phone call to the meal service asking them to refrain from even thinking about bringing me food - just can't eat it. Also brought my one-cup coffee maker, so I am set.

The regimen thus far is going well. This course A is better than the course B. I've passed the time doing work, working my way through e-mails, and playing a video game that my Mom bought me as a gift during her visit. My room seems to also be the popular room for the nurses to visit, probably because of the larger size and my speaker system with some tunes. It is funny being the resident police officer - everyone has a story to tell.

My poor Kim has caught the cold that Courtnie has had for a few days. Sadly no visit from them today. Courtnie advanced a belt in karate last night!!! She did really well and I am so proud of her, I wish I could have been there to see it. She really loves her teacher - Ms. Michelle, who is an AWESOME teacher. I'll have to post some pictures when I get them.

I found the following on the Internet and wanted to pass it along:

BUTTERFLY

A man found a cocoon of a butterfly. One day a small opening appeared. He sat and watched the butterfly for several hours as it struggled to force its body through that little hole. Then it seemed to stop making any progress. It appeared as if it had gotten as far as it could, and it could go no further.

So the man decided to help the butterfly. He took a pair of scissors and snipped off the remaining bit of the cocoon.

The butterfly then emerged easily. But it had a swollen body and small, shriveled wings.

The man continued to watch the butterfly because he expected that, at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time.

Neither happened! In fact, the butterfly spent the rest of its life crawling around with a swollen body and shriveled wings. It never was able to fly.

What the man, in his kindness and haste, did not understand was that the restricting cocoon and the struggle required for the butterfly to get through the tiny opening were God's way of forcing fluid from the body of the butterfly into its wings so that it would be ready for flight once it achieved its freedom from the cocoon.

Sometimes struggles are exactly what we need in our lives. If God allowed us to go through our lives without any obstacles, it would cripple us.

We would not be as strong as what we could have been. We could never fly!

I asked for Strength.........
And God gave me Difficulties to make me strong.

I asked for Wisdom.........
And God gave me Problems to solve.

I asked for Prosperity.........
And God gave me Brain and Brawn to work.

I asked for Courage.........
And God gave me Danger to overcome.

I asked for Love.........
And God gave me Troubled people to help.

I asked for Favors.........
And God gave me Opportunities.

I received nothing I wanted ........
I received everything I needed!

Trust in God. Always !

At long last...

Okay, I am finally back and have plenty to write as it has been building up over this last stretch of time.

First and foremost, I'm feeling a lot better. The pneumonia is pretty much gone as of today - just a little residual crud in the chest. I'm sure that I may very well have more of that in my future, but hopefully it won't be as bad. The pneumonia combined with the bad blood counts really wasn't fun.

Has taken awhile to get to feeling good but I've finally made it. A lot has gone on since the last post. Kimmie and I met with a stem cell transplant specialist and learned a great deal about that process. Gave us a lot to think about as we contemplated the decision whether or not to do a stem cell transplant at this point. I have decided not to do the stem cell transplant.

In addition to going through the decision-making process on the stem cell transplant, my Mom visited from out of town and we had an awesome time. It was great to have the time together and also great to have all the great meals that she and Kimmie made! My Mom is an awesome cook. She and Kimmie also planted a whole mess of bulbs in the back yard with Courtnie's help. The whole visit was too short but was nothing but a good time. Kim's folks, unsurprisingly, allowed my Mom to stay at their house and I am very thankful to them for yet one more thing.

It is funny, for a good deal of the time that has lapsed since my last real posting I literally could not get on the computer to type. During that time I would usually be laying in bed feeling less than chipper but I frequently thought of this blog and what a blessing it is to me - to be able to write, to be on the receiving end of so many supportive wishes, and hopefully to occasionally write or share something that helps someone else.

I have to say that even if I could have typed during the down time I had - I don't know that I would have. This last period I had to do all I could do to remind myself how lucky I was - I'm surrounded my awesome family, I'm supported by awesome friends, I am in a better position than others who face MCL, my doctor is brilliant and proactive in making me as comfortable as I can be made to be... I could go on and on. I mention this because it can't be said too many times and I'll never be able to thank everyone enough. I also mention this because, as I said, I don't know that I would have written here because at the time I didn't have the words. That was a function of getting too focused on myself and forgetting how this cancer is affecting everyone I know. So I waited to write. There were over 1,100 'hits' on this blog from my last post till today, and I've received over 400 e-mails in that same period of time... for those that have been waiting for more and/or a reply - my apologies and you can now expect to see more on the blog and replies to e-mails.

That is especially true because tomorrow I am headed back to the hospital for Course A and should have some time on my hands. The chemotherapy is cumulative so I expect that this Course A will be possibly a smidgen harder than the first Course A, yet it will be infinitely easier than the Course B I last did. I'm typing this as I get my first drug - Rituxan - at Dr. Lee's office.

I just read this article and wanted to share it because so many of those that I know are leaders. But I believe the information is useful for anyone because I've always been of the opinion that no matter who you are, you are 'leading' someone - be it a child, friend who looks to you for advice, family member that has lost there way... etc. Anyhow, here's the article for anyone interested... http://discussionleader.hbsp.com/taylor/2008/05/memo_to_a_young_leader_what_ki.html

And this is a related quote that I think is good too... "People can only hear you when they are moving toward you, and they are not likely to when your words are pursuing them. Even the choicest words lose their power when they are used to overpower. Attitudes are the real figures of speech."
-- Edwin H. Friedman

I'm soon to be unhooked so I will conclude here and write more once I'm in the hospital. My thanks again to everyone for helping me through this.

Gale Warning

I used to race catamaran's with an uncle growing up. It was a lot of work but also a lot of fun. Typical of me, one time I decided to go out 'solo' with the obvious signs of a storm on the horizon and the water.

Storms aren't the end of the world for sailing. In fact, I'd go out intentionally as I had this time because with the right sail and experience, some awesome sailing could be had. Problem with storms is you don't necessarily know how severe they are going to be as you watch them approach. Bigger problem is sometimes, some people, get way off from shore when I, I mean they, see flags like this go up on shore...

Well, the one time in particular that I'm thinking of when I went out by myself to sail in the storm is memorable mostly because it is VERY difficult to drag an overturned catamaran, in a storm, for even a short distance. But there I was, swimming with a makeshift rope harness pulling my beloved catamaran which was too large to right for one-person - for nearly three hours... It was miserable. The water was cold, the waves were relentless, the storm's wind and rain conspired to drown me, and there were only two choices - swim or drown.

The time between my last post and this one has been that experience. The lack of word from me was literally because I could not even get on the laptop to get the update out. Good news is - here I am with an update.

I won't bore you with the blow-by-blow details of this last bout with adversities. In summary, my blood counts fell to all time lows - in particular my platelet count went dangerously low along with my white blood cells and that required a platelet transfusion; along with that it was found I had pneumonia in my right lung (which I think I've had to a degree since we started the chemotherapy but became a real problem when 'Course B' knocked me flat). Those two things put me in the hospital again for monitoring and antibiotics. To summarize my summary - I've had an unpleasant time between my last post and this one.

Things have improved dramatically however. I don't know, once again, where I would have been without Kimmie's help - she pulled me through again. It is so distressing for me to be so unable to help her - I want to at least cook meals or something... for those of us that are this sick, our caregivers are gifts from God. Thank you Kimmie.

I again appreciate the support I feel of all. I will have more posts soon. Definitely have dropped down to taking things day-by-day, if not hour-by-hour right now but even if I can't write I do read comments and e-mails and thank you for those. I wish everyone the best!

Holy Reindeer Grail

This last summer my family and I started going to what I would call a 'second-tier' amusement park. When I was younger I remember going to a traveling carnival that passed through the forested area of Pennsylvania that my Mom's side of the family is from. That carnival was so unique to me - the site was placed at a meadow in the heavy forest, which I remember contributing all the more to the mystery because the night was even blacker for it and the lights even brighter. Me being the kid I was, I spent equal amounts of time taking in the usual carny amusement rides, food, games, animal acts and rides, and sideshow curiosities as I did sneaking under the flaps of tents, under floors of stages, and trying to find other mischief to get into.

The amusement park we now go to isn't a carnival by any means. It is closer to a carnival, however, in price and rides than the local Six Flags. And it is richer in history and, for us, richer in memories. Courtnie just loves it! It is such a different venue than, say, Six Flags. We run into people there who have stories that are very cool - like the story told by the carousel operator of the woman who has ridden that ride every year since it was installed - 1908.

I mention the carnival and our amusement park visits of last fall because on one of our recent times Courtnie convinced Kimberly and I that she "really, really" wanted to ride The Spider. We paid money to do this mind you. We excitedly waited in line and then strapped ourselves in.

You know those times when you sit there and think to yourself - Did I actually agree to and sign up for this? Am I paying money for this or is someone paying me? And, basically, what was I thinking? Well, at that moment, that ride on that day was one of those times - picture Courtnie and I, her very unhappy to be there, me helpless to do anything for her... there seemed to be no redeemable value to the whole thing. CJ cried and I did my best to comfort her. Then, finally, it was over.

The last few days have so far been that ride for me. This second round of chemotherapy has left me in pretty bad shape but I feel sure that what I'm experiencing truly could have been worse and is for others. As usual, the hospital stay wasn't bad except for the inability to get any real sleep. Each day became increasingly harder, however. Dr. Lee, on discharging me Friday morning, said that my Methotrexate levels were remaining high and he would be prescribing me an additional amount of the rescue agent - Leucovorin. On Friday I also received my Neulasta shot, this time in the arm tricep, in order to start the boost of my white blood cells to aid in recovery and immunity.

The "ride" really began after we got home and pretty much was bad enough to keep me from writing this until today, Sunday. I'm drawing strength from the fact that Courtnie, almost immediately after getting off of The Spider ride, turned to me and Kimmie and said "I want to do it again, but not today." Although you will not hear me say I want to do it again, I know that this ride needs to be repeated - and I'm thankful for a reprieve before I have to do course B again. For those who care about the components of this post-hospital ride: I definitely felt nauseous to the point that this time I took the pills for it, general flu-like symptoms but this time I didn't have a pre-existing cold to complicate things which was good, and lower back pain that I almost decided was significant enough to return to the hospital for. The Methotrexate can induce hepatitis and I didn't want to mess around too long with that. I debated only because I knew that I was taking the rescue agent and thought I'd give things an opportunity to subside.

Which brings me to a ceramic cup that I count among my favorites. On that cup are displayed several reindeer and the cup is clearly supposed to be a holiday cup, even though I use it year round. That cup, last night, became the 'Holy Reindeer Grail.' Later tellings of the actual Holy Grail story hold that object as a symbol of God's grace. Last night my Reindeer Grail was good enough and no less appreciated. My magic cup was full to the brim with green tea and within moments of consuming it the pain in what I think was my kidneys subsided and was gone.

During this time of struggle over Friday and Saturday I had the experience of reflection and quasi-dreaming that seems to go hand-in-hand for me with some trials and tribulations - particularly those involving lack of sleep or pharmaceuticals. Nothing like the fun of reading Stephen King's Pet Cemetery while on whatever they gave me to fix a bout with mono in high school, but that'd be hard to top! It is so interesting to me how there are boundless examples of traditions in which practices designed to fatigue or stress out a person are the mechanism used to create growth - be it mental, physical or spiritual. I think back to some of the unique experiences of my own life - a high-stress military exercise in ROTC training with 72 hours of sleep deprivation, a four-day 'vision quest' with the Jicarilla Apache Nation, the 27 miles in the open water from the Catalina Islands to the mainland, biking the length of Baja California. It is in those times when you really get clarity. And chemotherapy definitely fits the bill as well.

I don't think my reflection this time around is that interesting - really just too far out there in most regards. I suppose if I was the type who understood psychoanalysis or wanted to put a lot of stock in what is behind those self-reflective thoughts - it would have potential. But I'm not. What did strike me this time was the mental picture that came to me of watching the shards of something that was once whole, falling toward me from the sky above. I understood that those pieces were of something I held to be important. As I thought of it I decided that that thing was my life. And I am not thinking of that in the narrow terms of my ability to breathe and move but more of that more important concept of your life being not just you but everything about you - your relationships, your past and future, your successes and failures, all of that stuff that woven together is - no matter if you were cared for by only yourself or the entire world - an integral part of the flow of time.

And, of course, because both my brain cells lined up at that particular moment I asked myself what this meant even though I'm not one to delve into the "deep" meaning of things. And I decided this. First of all, a lot of broken things heal to something stronger than the "original." Second, I didn't survive 38 years without screwing up and, importantly, neglecting to fix mistakes. This chemotherapy has opened up an interesting opportunity to have myself broken, to hold on to those things which are good and make them stronger, and to see ultimately some of the things that need to be fixed. That said, I'm thankful even if the price of this passage is a little steep and the ride uncomfortable.

All Systems Still Go

Just a quick note to say that all continues to go well. I should be released from hospital Friday morning.

Some funny (to me) things I found...

Once again, back into the breach

I sat at Dr. Lee's office on Monday to start this week of chemotherapy. But before I get into my "up to now" as I type this on Tuesday and begin this week's hospital stay, let me go back to where I left off - which was Friday. As instructed by Dr. Lee, I took it easy in preparation for my bumped up chemo schedule.

On Saturday I officially became, according to Courtnie, the 'Bald Eagle.' Yep, lost my hair. Of course, that's like half a bald tennis ball losing it's fuzz so now my head is pretty much just shinier as opposed to less hairy. Now I'm even more aerodynamic and it made me long for the days when I used to do a lot of open-water swimming off the coast of California for some reason. And of course that made me think not only of the follie of swimming in the world reknown "Red Triangle," so named for the number of shark attacks in that particular swimming hole, but of Okayama Restaurant in San Jose, California because any excuse I can have to think about Japanese food and sushi... I digress.

My time in San Jose was where I had the awesome experience, however, of learning about Japanese culture and its people. And where I acquired my love of sushi and Japanese food. Initially, after Santa Clara University, I worked for Sumitomo Bank in commercial lending and learned a great deal about Japanese tradition - much of which is rooted in business customs. Mr. Oka, my mentor and trainer, was instrumental in teaching me about the customs surrounding Japanese dining - it was an amazing learning experience! For me, it was definitely one of those moments when I had to stretch my willingness to try totally new things - nobody would believe it now, but it was a leap to try sushi, for example. Some of that was made easier by Japanese whisky - spelt whisky because it follows the Scotch convention and does not tend toward the Bourbon whiskey.

That time was followed by a decade, more or less, of working for the Japanese-American law firm of Fujinaga & Oshika in the heart of San Jose's Japantown. Again, my experience is something I would not have traded for anything.

On Sunday, Kimberly, CJ and I went for another hike - which was awesome as usual. This hike was a little longer than last week, probably almost 3.5 miles and a little more challenging terrain. Unfortunately, I forgot the camera as I frequently do, so no pictures. This was not the rock climbing sort of hike like the one we had last weekend so CJ was mainly challenged by walking the distance and the climb. Which translated to Daddy carrying her on his shoulders for the last little bit. Was fun carrying CJ but she almost choked me out several times - she is convinced I will drop her for some reason... maybe we need to rethink her karate lessons... ha!

This is CJ and I on last week's hike. We all agreed that last week's hike was the better of the two.

That brings us to Monday, sitting there at Dr. Lee's office getting my Rituxin. Have to paint the picture first of what my Monday of "Chemo Week" is like. First, we arrive at Cancer Care Center of Thornton, of which Dr. Lee and Dr. Rovira's practice is a component. My apologies for doing this every time I mention some of the great doctors I have had the fortune to recruit to my team - but Dr. William Lee is awesome and if anyone is in need of his services I recommend him without reservation.

My beloved Kimmie as we go in to Dr. Lee's on Monday, standing in front of those offices.

Preparing to access my port... basically disinfecting me here.

Here the port location is being frozen to minimize the pain of the hookup...

And here I am 'hooked up' with port in place and waiting for connection to the chemo...

And here are some of the key member's of my team at Dr. Lee's office... Cashew and my nurses Mary Beth and Jodie...

In the the picture with Cashew in it, you can kinda get a sense of the area I sit in for Monday's treatment at Dr. Lee's office. This particular Monday was a pretty full house, not typical, with maybe a dozen people sitting in the same general area that I was sitting in to receive their chemotherapy. This particular time I overheard someone who I could not actually see talking to people with them there at the office and then on their cell phone.

As one can imagine, people diagnosed with cancer have so many different reactions and as the people watcher and eavesdropper that I am it is fascinating to see and hear. I read an article in Psychology Today (http://www.psychologytoday.com/articles/pto-19990501-000019.html) in which Mount Zion Cancer Center at the University of California at San Francisco, devised 10 steps, helping patients face cancer. I thought to myself how different everyone is in their way of coping with cancer. The person I heard was focused in an entirely different way than I am, for example.

And I don't know what type of cancer or prognosis they have so I won't really say anything beyond that it is interesting to hear and observe others who are on the same ship I am contemplating whether they are on the Queen Mary or the Titanic. Truly, I want to say we that are diagnosed with cancer are most definitely on the Titanic. Difference is, we've been given the news that the ship is going down somewhere up ahead - some will go down with her, some will find themselves snagged out of the freezing waters and saved from certain death, and some will find themselves in lifeboats and rescued, and some will find themselves on the wrong side of the ocean surface still aboard the ship.

There truly is no telling who will be in which category. But knowing is a good part of the battle... the prognosis for some is really good - they not only know but they additionally have berths right next to a lifeboat (good chance they are going to be rescued); for some the prognosis isn't as good - their berth is deep in the ship so they need to work hard and make their fortune by maybe camping out near the lifeboat; for some the prognosis really isn't good - they are fully aware of the iceberg but somehow they find themselves locked in a room down near the ship's boilers (but these people have the will to survive and they are working on their escape, and some will survive); the last group is the one so interesting, but sad, to watch - they are the one's that have decided to lock themselves in their own berth with no intention of leaving because they either have convinced themselves that there is no danger or that there is no hope of rescue (some of these people are pried out at the last minute in spite of themselves).

Fortunately for me, and I'm always thankful passing each hurdle, Monday's chemo went smoothly. The biggest complication being the Benadryl they put in me to counteract an allergic reaction that is possible with Rituxin. Benadryl makes me pretty sleepy. But I'll take sleepy over an allergic reaction anytime.

Fact of the matter is, Monday's session would have been worth whatever side-effect may have occurred because Kimmie brought me Japanese food from another local favorite - Tokyo Teriyaki. Wasn't sushi, but was teriyaki chicken and veggies and tasted great! For those who are missing it... Japanese food and sushi will always be mentioned on this here blog thingy.

In fact, we will just get it out of the way... Tuesday my beautiful Kimmie brought me sushi for lunch... see...

And backing up, here I am getting hooked up around 11 AM by the awesome Reagon - my and Kimmie's favorite chemo nurse to date at St. Anthony's. And me with my bald head after the IV placement just prior to that hookup to the chemo.

That IV placement, some may recall, was rough last time I was in the hospital. That last time was due to being dehydrated from surgery, etc. This time around there were no problems - still isn't the most pleasant thing in the world but it went well and was quick. The nurse that did it was Gordon and he is normally an emergency room nurse so he has done a couple IV's. The attachment for my port was left in from yesterday so I didn't have to get re-"accessed" as they call it. Being accessed and deaccessed are the terms for putting in and removing the needle/barb that goes into the port. Needless to say, I appreciated that.

Checking into the hospital is always funny... they want you there about 7AM (after last time I figured out that 8AM is better because early doesn't gain a person anything but more waiting time). Then you are escorted up to the chemo ward and basically sit in your room until sometime after 10AM because they can't get the chemo drugs made any sooner than that. So we, Kimmie and I, spend that time sanitizing the room (hospitals are, oddly enough, some pretty germ-ridden environments), and I set myself up for my own little party with a speaker system, the laptop, snacks, pictures, etc.

Last time around I had a HUGE room. This time around I was thankful to find that I'd been assigned to a "regular" room which is significantly smaller. For those that have ever had to spend time with a rolling IV stand, you know what I mean when I say that it is nice to be a few steps from the sink, bathroom and stuff in the room.

As I finish up this entry, it is almost 9PM. Things have gone well. One of the remotest side-effects for this drug is a coma - safe to say, I'm still awake and aware of things. I'm not, in fact, feeling any side-effects today. Have been drinking water like you would not believe, which really helps. Have also been out walking - unfortunately, this time my IV stand is not as good as the one I had last time around and as a result I'm not walking other floors of the hospital much. But I've made my loops on the floor I'm on and have visited another patient of Dr. Lee's who is undergoing the exact same regimen for a different variety of cancer as I have. Was nice to see that he is also doing well, and a further testament to the measures that Dr. Lee put in place to manage our side-effects. I discovered a cardiac reahab gym on the first floor... my mission tomorrow is to use my remaining charm to convince someone to let me use the equipment in there. I'm doubtful about my chances of success, but I can be a real pest so maybe I'll succeed.

As mentioned before, I always anticipate and prepare for the worst, hopefully I will continue to be blessed and have the fortune of not experiencing "the worst." Sounds weird, but I'm thankful that I discovered this at a younger age because I have no doubt that it is making a difference in my body's ability to cope with the havoc that is occurring inside me.

In closing today, I've always been struck by the lack of desire to report good news by the Press. It is amazing, for example, how journalists out and out REFUSE to report the amazing and heartwarming events and positive stories that are occurring because of the efforts of our soldiers abroad. I just don't get that. Regardless of a person's position on the war, etc. - why would we not demand as a society that the reporting is balanced. Seems like news is primarily focused on vilifying everything and inciting discontent in the public at large.

That speaks of the attitudes of those institutions and those who participate in perpetuating or emphasizing negativity. Lincoln once said, "I've come to realize that people are about as happy as they make up their minds to be." That leads me to recall two times that Charles Swindol said something about attitude and I'll close with those two quotes:

The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, the education, the money, than circumstances, than failure, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church... a home. The remarkable thing is we have a choice everyday regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10% what happens to me and 90% of how I react to it. And so it is with you... we are in charge of our attitudes.

I believe the single most significant decision I can make on a day-to-day basis is my choice of attitude. It is more important than my past, my education, my bankroll, my successes or failures, fame or pain, what other people think of me or say about me, my circumstances, or my position. Attitude keeps me going or cripples my progress. It alone fuels my fire or assaults my hope. When my attitudes are right, there is no barrier too high, no valley too deep, no dream too extreme, no challenge too great for me.

Thanks to those who have written, called and visited. And thank you to those that are just out there living life to the fullest - I'm thankful for, inspired, and boosted by you every single day.

There is news on a fundraising effort for me and I'll be putting information in the sidebar about that based on the unanimous recommendations that I do that. I won't beat around the bush, this is an expensive undertaking and I will go so far as to ask for help from anyone who wants to. Truly I believe that most anyone faced with some similar circumstance is consumed with the anxiety of leaving a legacy of debt for their family - regardless of the ultimate outcome of the event that causes that debt, it is there.

Friends of Hutch is the entity that I am working on developing that in the future will be in place to provide assistance to Fire Fighters, Police Officers, and Emergency Medical Service Personnel, throughout the United States, who have been diagnosed with cancer. This time around that assistance is sought for me and I can't wait for the time that I am well and can be involved in and the catalyst behind those efforts. For now, with regard to the sidebar information on this fundraising effort, the thanks and credit goes to Bill for thinking of it and organizing it. And already there are a long list of people to thank for supporting that effort in many ways - THANK YOU ALL. And thank you to all of those who took the time to tell me why I should not shy away from recognizing and mentioning those efforts being made on my behalf.

Schedule Change

The balance of this week has gone really well. On Thursday I was finally able to get back to work, which was really great. I've said this a hundred times to people I know - if you aren't doing what you absolutely love doing, start working your way towards that thing you want to do. It is worth every effort once you arrive at the work you love to do.

Today I met with Dr. Lee for my end-of-week review. My blood work improved throughout this week and I'm feeling pretty normal. This was all great news to me, as it was to Dr. Lee. The upside of this great news is that my second round of chemotherapy is now going to begin this Monday, a week earlier than previously planned.

As Dr. Lee asked me about whether that was okay or not, it struck me as funny. What other possible item could I have going on that could be of some greater priority than to follow his recommendation? I was tempted to say - "Well, let me check my calendar..." but I dare not mess with the man that is doing such a good job keeping me feeling halfway decent through this ordeal.

I've told myself that this hospital visit is going to be different than the last - which is by no means to say that the last wasn't good. Going into this hospital stay already promises to be better - other than the remnants of some chest congestion working its way out, I'm not sick or just coming down with a cold this time; and unlike last time I won't be fully dehydrated because of a surgery on the first day; and unlike last time, my muscles don't feel like they've been beat with a sledgehammer.

This cycle is the 'Course B' of the R-HyperCVAD regimen. That means I will be given the following drugs:

Rituxan - depletes B cells; same drug I had at the beginning of Course A.
Methotrexate - is an antimetabolite and antifolate drug.
Leucovorin - used as a 'rescue' agent to prevent excessive cellular damage by methotrexate.
Sodium Bicarbonate - used to produce a mild metabolic alkalosis, desirable when administering large quantities of methotrexate.
Cytarabine - belongs to a group of drugs known as antimetabolites. It resembles a normal cell nutrient needed by cancer cells to grow. The cancer cells take up cytarabine, which then interferes with their growth.

This next week's plan will be the same as the last time - Monday I will do the Rituxan at Dr. Lee's office and then go home to sleep. Early Tuesday morning I will check in at St. Anthony's North hospital and I will be sprung again on Friday.

This Course B is reportedly a bit more challenging than Course A. I'll be soon letting you know. As always, I appreciate everyone's support and love checking this blog and e-mail for messages!

I had said that I hope to make this hospital stay different than the last. I have several things in mind:

1.) I plan to get out and walk around a lot more... always tough when you are tethered to an IV pump but hopefully I will get out more this time.

2.) I didn't get out and visit other patients on the floor last time like I want to. This time I plan to do that.

3.) I am going to campaign to have sushi and Japanese food smuggled in for at least every lunch and dinner. As I mentioned before, this just has some sort of miracle effect on me.

4.) No television this time - I'll probably watch a few of my favorite movies on the laptop - Hannibal, Chronicles of Riddick, Blade, The Silence of the Lambs.

This weekend I may not post anything else. I hope to have as much fun as possible - maybe another hike. Updates will definitely be regular starting Monday however.

Revised "About Me"

My "About Me" used to start with the words "I have mantle cell lymphoma"... and at the time I thought it was a good introduction. But it was sitting in the subconscious for a time and apparently the censors and editors were hard at work because I found the following in my mental inbox as the revision.

About me. As I mentioned, I had begun this introduction before with an introduction of another warrior facing MCL. And those words rang true. I felt that it was exactly true, exactly right. As has happened throughout my life, I was to stand corrected – this time by my own ‘self.’ As I mentioned, in the back of my mind, on that smallest burner of the stove, what I had decided to say “about me” was simmering away and becoming something that I could really serve up and say was an accurate reflection of who I am.

I love the Shelby Supercars Ultimate Aero. It claims the distinction of ‘World’s Fastest Production Car’ and I think the Cobalt Blue color option would best fit with my skin tone. But the fact that it is the ‘World’s Fastest Production Car’ doesn’t tell you what it is. And that is the problem I ran into with my previous introduction because ‘mantle cell lymphoma’ does not give any more credit where credit is due than the title claimed by that car. In the car’s case, it doesn’t tell you how it came to be the title holder. In my case, it undoes who I am and makes my title ‘guy with mantle cell lymphoma.’

I said credit where credit is due. And where is credit due? I believe that having a cancer causes a person to think in ways that many don’t bother to. And I would have, before knowing I had this cancer, erroneously said that it isn’t really necessary to think in those ways. That is, why think about what has brought you to where you are and shaped you into who you are? Why care about what you did today? What value is it to consider the worth of those things and people and ideas that surround you?

But certain events change you. I thought I had a good grasp on that before – I’ve been in the helpless position of watching a friend die of injuries which I might only have been able to help if I’d been a surgeon, I’ve been involved with children that were victims of abuse that I would not believe possible for another human to inflict or of a child to be able to sustain, I’ve been part of the decision-making process that provided the order for others to carry out acts resulting in the deaths of other human beings, I’ve been a stranger telling someone that their loved one would not be coming home. I’ve also been the one standing in the right place to rescue a drowning person at the beach, and to help a veterinarian with a complicated horse birth, and to have been told by someone I hardly knew that something I didn’t even realize I’d said completely changed who they became. I’m not saying anything that is unique to me – nobody lives in a vacuum and nobody lacks similar experiences. But I can say that I didn’t ever really think about much more than what do I need to get done around the house, what do I need to get done at work this week, and what am I going to do with my family on my next days off. Stuff like that. I never reflected much on life which, most importantly, meant that I never truly appreciated the people, places, ideas and things that filled it.

Which really ends up being the answer to the ‘Who am I’ of this introduction. Who I am is defined by those people, places, ideas and things that have thus far filled my life – same as everyone else. I’m not the guy with MCL – I’m the guy in that song “Who Am I” by the Casting Crows that continues to struggle with religious ideas but found out that I could still be a believer and draw from that faith in spite of myself, I’m the guy whose pre-kindergarten friend Garvey taught him that there is no value to evaluating a person on any basis other than how they are as a person, I’m the guy whose parents taught him how to live on little and then with more, I’m the guy who was afforded extraordinarily unique opportunities in education, in service to my Country, and in careers. I’m the guy who found his one true love, married her and in the process gained a family whose end of generosity and kindness seems to have no limit. These are but a few significant examples of those defining things.

So, yes, one of the latest defining moments has been a diagnosis of MCL. But to describe myself in some sort of biography just doesn’t seem interesting to me, I’d bore you before we got to my fourth birthday. Like that Shelby Supercars Ultimate Aero that captures my imagination – who I am isn’t even about “me,” it’s about all the experiences, memories and people of my life. Those are the engineers who created the parts that together make me.

Strength and Virtue

I've received many very kind comments lately. I haven't had the opportunity to respond individually and I wanted to just say thank you. Several of the comments speak of courage, strength, hope, and faith and it occurred to me that I read something at the end of last year that I added to the 'guideposts' of my life that I wanted to share.

Before quoting that piece, however, let me say that in addition to missing my work - I've missed the people I work with. This is relevant to those comments on courage, strength, hope, faith... because those people who I am fortunate enough to work with and around are my regular examples of this. After some unavoidable delays, tomorrow looks to be my day for going back to
work in a restricted capacity. It will be great to be there even if I can't get out in a patrol car.

Quick update on me. Over the last few days I've been steadily bouncing back from the "low" I was at on Friday. Monday and Tuesday my blood tests showed positive increases over the previous test and I have felt correspondingly better. On Sunday we went for an awesome hike in the Boulder foothills on what was a gorgeous day. Courtnie was beside herself because she lives to hike trails and, more importantly, climb rock formations. It always does my heart good to hear strangers say something to the effect of she is an amazing climber - particularly as she climbs right past them to a peak that is 100 feet off the ground. How awesome it is to watch children who have no sense that something should concern them. And how thankful I am that there are professional climbers because Courtnie will be shortly climbing beyond my limited abilities. Unfortunately our hike was not without injuries - Kimmie falling on a slick piece of trail and donating some skin from her hand and Courtnie discovering a cactus hidden in some grass. In spite of that, we had a few hours of that untradeable sort of time that my recovery caused us to have to delay and it was awesome!

The thing I said I wanted to share comes from the Appendix of the book On Combat: The Psychology and Physiology of Deadly Conflict in War and in Peace, by Lt. Col. Dave Grossman. That Appendix A is entitled "Erasmus' Twenty-Two Principles on How to Be Strong While Remaining Virtuous in a Dangerous World," from the Enchridion Militis Christiani: A Guide for the Righteous Protector, by Erasmus, 1503, extracted by Sergeant Chris Pascoe, Michigan State Police.

First Rule
INCREASE YOUR FAITH.
Even if the entire world appears mad.

Second Rule
ACT UPON YOUR FAITH.
Even if you must undergo the loss of everything.

Third Rule
ANALYZE YOUR FEARS.
You will find that things are not as bad as they appear.

Fourth Rule
MAKE VIRTUE THE ONLY GOAL OF YOUR LIFE.
Dedicate all your enthusiasm, all your effort, your leisure as well as your business.

Fifth Rule
TURN AWAY FROM MATERIAL THINGS.
If you are greatly concerned with money you will be weak of spirit.

Sixth Rule
TRAIN YOUR MIND TO DISTINGUISH GOOD AND EVIL.
Let your rule of government be determined by the common good.

Seventh Rule
NEVER LET ANY SETBACK STOP YOU IN YOUR QUEST.
We are not perfect - this only means we should try harder.

Eighth Rule
IF YOU HAVE FREQUENT TEMPTATIONS, DO NOT WORRY.
Begin to worry when you do not have temptation, because that is a sure sign that you cannot distinguish good from evil.

Ninth Rule
ALWAYS BE PREPARED FOR AN ATTACK.
Careful generals set guards even in times of peace.

Tenth Rule
SPIT, AS IT WERE, IN THE FACE OF DANGER.
Keep a stirring quotation with you for encouragement.

Eleventh Rule
THERE ARE TWO DANGERS: ONE IS GIVING UP, THE OTHER IS PRIDE.
After you have performed some worthy task, give all the credit to someone else.

Twelfth Rule
TURN YOUR WEAKNESS INTO VIRTUE.
If you are inclined to be selfish, make a deliberate effort to be giving.

Thirteenth Rule
TREAT EACH BATTLE AS THOUGH IT WERE YOUR LAST.
And you will finish, in the end, victorious!

Fourteenth Rule
DON'T ASSUME THAT DOING GOOD ALLOWS YOU TO KEEP A FEW VICES.
The enemy you ignore the most is the one who conquers you.

Fifteenth Rule
WEIGH YOUR ALTERNATIVES CAREFULLY.
The wrong way will often seem easier than the right way.

Sixteenth Rule
NEVER ADMIT DEFEAT EVEN IF YOU HAVE BEEN WOUNDED.
The good soldier's painful wounds spur him to gather his strength.

Seventeenth Rule
ALWAYS HAVE A PLAN OF ACTION.
So when the time comes for battle, you will know what to do.

Eighteenth Rule
CALM YOUR PASSIONS BY SEEING HOW LITTLE THERE IS TO GAIN.
We often worry and scheme about trifling matters of no real importance.

Nineteenth Rule
SPEAK WITH YOURSELF THIS WAY:
If I do what I am considering, would I want my family to know about it?

Twentieth Rule
VIRTUE HAS ITS OWN REWARD.
Once a person has it, they would not exchange it for anything.

Twenty-first Rule
LIFE CAN BE SAD, DIFFICULT, AND QUICK: MAKE IT COUNT FOR SOMETHING!
Since we do not know when death will come, act honorably everyday.

Twenty-second Rule
REPENT YOUR WRONGS.
Those who do not admit their faults have the most to fear.

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Footnote: I've removed the survey I had on the blog because I had nothing but responses that encouraged me to include information on any fundraising events intended to help me and my family. When I have information I will include the contact information for those who want to help. Related to this, I know there are many fellow MCLers now following this blog and I hope I do our common challenge a service. If you are aware of resources or have had success with any means of minimizing the impact our diagnosis has on us - please share. Yes, I want this selfishly for myself but I would also guess that more than just my own self could benefit by having those ideas gathered in 'comments' here or in some other place. And although financial burden is on my mind, I think any collection of information would be helpful to all. If it doesn't exist already in someone else's blog or website, I could make a sidebar on this blog listing 'Resources for MCLers' as it were which would be helpful to all. Just a thought from the peanut gallery.

Awesome Surprise! No, I still have MCL

I cannot believe that I didn't mention this. After my appointment on Friday my awesome Kimberly gave me the greatest comfort thing I could ask for in these days - sushi! We went to this great sushi stand at Flatirons Mall and got a couple of orders of California Roll with extra wasabe and no ginger and I was in heaven on earth! Thank you Super Wife! Dr. Lee said I can only eat the cooked sushi during my appointment - which is fine by me because California Roll is my most commonly ordered variety. I was so happy with this surprise - I could eat that every single day and never get sick of it. And I couldn't believe how much better just eating that made me feel - psychological I'm sure but it has lasted into the next day and, again, I can't thank Kimmie enough or Mom and Dad Bone enough for allowing us to go while they had little CJ for a bit longer.

Following the Rules

The last few days I've continued with my daily blood tests. I've actually been regaining energy and the ability to stay up and interact with people. I am very encouraged by this in part because I miss work and look forward to contributing there, albeit not doing my regular duties. My blood counts have however been diminishing as the week has gone by. Dr. Lee's comment on that was - "So you decided to follow the rules," meaning that this drop in white blood cell count and neutrophils, a specific type of white blood cells, is anticipated. As of Friday I was officially suffering from nuetropenia.

This isn't a big deal - means that I am at an additional increased risk over the next few days of getting sick due to a super low immunity system. Dr. Lee is more concerned with the germs that we all have inside ourselves making me sick and that is why I'm taking a slew of drugs that are anti-bacterial, anti-fungal and anti-viral. Dr. Lee's advice being to spread the word and make sure that all those around me wash hands super-frequently so that doorknobs, dishes, et cetera that we all share are not contaminated with germs. Dr. Lee additionally confirmed that I'm recovering from bronchitis.

Beyond the blood work and meeting with Dr. Lee I got another dose of chemo and steroids at today's appointment. The chemo was Vincristine which I also had a dose of in my first hospital stay. The side-effects of this one are manageable for me so I don't anticipate significant problems. The steroids are supposed to probably have me a little wound up over the next couple of days and then subside.

Importantly, the results of the bone marrow biopsy and aspiration are somewhat inconclusive even after some very extensive tests, including and beyond a FISH test. However, the specialist that did those tests is sure there is mantel cell lymphoma involvement in the bone marrow, so I am officially now a Stage 4. I will therefore be meeting in the weeks ahead with a stem cell transplant specialist to discuss the advantages of doing a stem cell (bone marrow) transplant. Discussion will be around the benefits of doing it and when it might be best to do it, among other things. At this point, the transplant route is just under consideration - it will be a choice to be made once we have information and various opinions. The change to Stage 4 from Stage 3 does not change anything significantly in my case - same chemotherapy plan is used, same belief in the ultimate possible outcome is maintained by me and my oncologist.

Everyone has a different take on the necessity or benefits of the transplant in addition to the chemotherapy. Problem right now seems to be in the fact that there is not validated, conclusive evidence one way or the other that a transplant is significantly or additionally beneficial. Nor is there agreement on whether that option is best implemented when the cancer is put into remission the first time or on a relapse, if one occurs. Unfortunately, much of the progress and treatments currently used in the fight against MCL are "new" and don't have a long enough track record to say - "this is the way!" Fortunately, however, the progress that has been made in very recent years is amazing and promising. I meant to and will be adding to the blog an information resource that pulls together my understanding of the current state of affairs with MCL.

I apologize for not doing that yet - been a little busy. I'm obviously heavily vested and interested in knowing the current, particularly validated, information. That said, what I intend to put together and maintain will be something current and accurate as I see it. I think even that information will be slightly less optimistic than the "right now" reality because I am going to ignore what is not available to every single person with MCL - i.e. although I may mention trials and new drugs, those aren't a reality until they have enough validity and results to be in the mainstream of MCL treatment options. Even so, I'm sorry I haven't done it sooner because I know that those that have done your own searches have likely found a huge spectrum in particular with regard to what a MCL diagnosis means, summed up frequently in the words "median survival."

I'm sorry also because I'm aware of many who locked on to things like "2 to 3 year survival" and many others who locked on to other information that this can currently be "cured." Neither of those statements is true as of this posting - the "median survival" of MCL is currently thought to be 6 years - I'll go into that in my information section because "median survival" is probably not what many think it is, thankfully. Median survival is particularly, in my case as things stand today, not something to get too wrapped up in with regard to me.

With regard to cure - they are working hard on it. It is a cancer that is so rare, so historically bad, and so specific that it has captured the attention of some great funding sources that are allowing incredible people to work on this unique cancer. That is the source of the amazing things that are happening in MCL research and statements that this cancer is curable. Obviously, I have a selfish reason for believing that it can be cured right now; but I think it would be wrong for me to lead anyone who knows me to believe there is a cure today - isn't so, not for everyone with MCL. Cure in the scientific world is a difficult term anyways - if a treatment is found to put some high percentage of people into what is called complete remission for over 5 years, some call that a cure. And that is understandable, where do you as a scientist draw that line? Is it a cure only if all those who did that treatment live long enough to die of some other cause - old age, accident, whatever?

Fortunately, my oncologist means I'm CURED because he and I will know each other when we are senior citizens. So, it will take some time to complete it but I will post and update that information section as I put it together until it is complete. Then I will maintain it so that it is current. As is common with many cancer survivors - I will be involved in a, or form my own, means to support the efforts toward the cure of cancer. I already know that part of that support that I hope to contribute is to "clean up" the information that is out there and minimize the unfortunate experience had by those diagnosed now with MCL, and their families and friends, of looking up "mantle cell lymphoma" and having even three-year-old information come up. This is not unlike believing that there is some similarity between a cutting edge computer made in 2004 and one made in 2008 - MCL research is fast-paced, being current is truly important.

I'll say that this disease seems to have a large degree of variance from individual to individual. In this blog I'm speaking to and updating my personal circle of friends and family first and, as such, this blog is tailored to my experience and feelings about "our" future - i.e. that of myself and those that are connected to me. So, for me with MCL, things are optimistic. This is for a number of reasons, not limited to but including:

• I'm younger than those 'typically' diagnosed with MCL (Men over 60 is more common)
• My involvement is 'low volume' even though it is a Stage 4
• I am doing the more aggressive chemotherapy, partly due to my good health and age
• My organs show no involvement, it is limited to nodes in pelvis and throat (and bone marrow)
• I have, starting with God and ending with maybe Cashew, the sometimes resident Golden Retriever at Dr. Lee's office, an INCREDIBLE support group

That is not without regard to and sadness over those that have been, as an example, younger than me that have not survived the disease and, for that matter, didn't have long from diagnosis to death. There is a reason that my calling in life, the work that I cannot imagine not doing, is as a law enforcement officer. Part of that reason, in my opinion of the profession, is that I am a realist and, in a fashion, a pessimist.

I could not, for example, approach this without leaning toward the pragmatist's consideration of things as they are or appear to be, avoiding ideals and abstractions. As you can see in this blog - I'm a facts magnet. Same as in my profession - a piece of evidence, a statement, or something missing that had to have been at a place leads from one thing to another, from a crime or symptom back to the cause and then forward to the solution or cure.

Similarly, my life experience and now my profession created a pessimistic component in me that I use to grow and nurture my optimistic personality. Professionally, it is absolutely necessary to always expect the worse to happen - all the time. It is what keeps us alive - every person, every car, every situation from where and how a law enforcement officer sits at a restaurant to how they drive down the road is constantly evaluated internally with the expectation that the absolute worst, most remote thing will happen.

Personally, my life has been filled with its own unique blend of challenges and my mechanism developed when I was very young to expect and anticipate the worst outcome and learn how I was going to accept and adapt to and overcome that. Luckily, I've been very fortunate and frequently my belief that I was going to suffer untold pain or hardship or whatever negative end was left as only the outcome I imagined.

So that is how I've lived life positively - because usually what I imagined is so much worse than what happens that the actual thing is not a big deal. Not that I would wish bone marrow biopsy and aspiration on anyone, or intensive chemotherapy or anything. I've just been "blessed" with having experienced significant sorts of pain growing up so my pain continuum is broad enough to usually say that my current discomfort is less than something I've had. My rare, because I'm a closed up type, intimate talks recently reinforced my belief that God prepared me for this current battle by allowing me to be lucky enough to literally flirt with unintentionally killing myself numerous times as I've tried to grow up.

I have to publicly apologize to some of the people, in particular my Mom, for the things I put them through. Although embarrassing, Mom may post to this blog on this posting and share with you the things I put her through. It'd probably be good therapy for my dear Mom.

Those of you that know me think I'm not normal now, you have no idea until you hear of blizzards and frozen creeks, interacting with baby moose, adventures with knives, sledding over cliffs, shooting rifles, and stitches and broken bones. And that stuff only brings us up to my being about eight years old. I still don't think I can say the things that I did to myself, "fixed" myself, or the close calls in which I surely should have killed myself that Mom doesn't know about. In almost all cases because, as I mentioned before, I have failed historically to ever get excited about doctors or hospitals.

When I was younger that was because they had shots and I absolutely hated and feared shots - I never really felt one but I thought they were the absolute worst thing that could happen or be allowed to happen to a child. Mom may have something to say about that too - I wonder if she got billed for the extra personnel that came in to restrain her little boy in the aftermath of his collision with the boulder? I bet they gave her a break when that same turd, years later, literally ran way on the opposite side of our city as the car stopped rolling at the oral surgeon's office to have my pre-molars removed. God help me - my daughter is all that and worse! Of course, my phone is about to start ringing as soon as Mom reads this.

My main point being though is that God truly prepared me to fight this fight. Those things did not make me anything better than anyone else - they just allow me to believe that I can do this and they allow me to overcome my anxiety a little more. Without those things, however, I would have been a different person and logic says I'd be coping differently. With those things, I also have had an incredibly rich life with some funny (now) stories that remind me of those of Edward Bloom in Tim Burton's film "Big Fish" - they are simply hard to believe, even for me. I am so thankful for those experiences now.

I do have a question for those of you reading this blog - which is already self-serving in nature because it is probably most helpful to me. That question appears as a survey question on the blog so please answer it there if you wish so that I can make a decision. Basically it comes to this, like most any person who is challenged with this kind of burden - this is an unexpected and significant expense. There are several people that are doing work to organize fund-raising events to support me. First I have to say, again, I am so thankful and know a whole new humble because of the support. But the question to help me make a decision is this - is it appropriate to share here on this blog information on those efforts? I will truly base my decision on the winning percentage of that survey I'm posting on the blog because of one thing - that act goes against my nature and I struggle with whether that is selfish thinking because the "financial" part of this has and will translate directly to a burden on my family that I might possibly help alleviate by sharing about events that are put together.