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.