Archive for the ‘Health’ Category

The time has come the walrus said…

October 16, 2008

 

 

Since mankind first began to form logical thought, we, as a race, have speculated about the nature of dying and death. Uncountable numbers of people have related their experiences with near death. What follows are mine.

 

Allow me to begin by removing some of the mystery surrounding bone marrow transplants as the transplant both saved me from imminent death and provided the framework for what I am about to relate.

 

The process begins by determining if the patient will actually survive the procedure. In my case this involved a couple of weeks of almost daily trips to what became nearly every hospital in the lower mainland and during which every major organ was evaluated. Once the transplant team felt there was a chance they would not be the primary instrument of my death, I was put on hormones which greatly increased the production of T-cells by my own bone marrow. A few weeks later these cells were filtered out in a process which involved a tube in each arm – one removing blood which passed through a refrigerator sized machine, the other putting the filtered blood back in. The result, after five or six hours was a bag of pink, creamy looking fluid which contained enough cells for two transplants. When a bed finally came free in the VGH transplant ward and I was admitted, we met with the lead doctor and he warned that my chance for survival was very low but without the procedure it was zero. I chose the transplant. Two days later in the mid-afternoon, I was administered an innocuous looking bag of clear liquid via my Hickman line (a multi-headed tube entering my upper chest and threaded into my heart). The following day, another bag, this one containing a cup or two of T-cells was dripped in the same way. Things gradually deteriorated after that. It was not sudden, as I had expected it to be.

 

My first real experience with personal death was a non-event, or rather a series of non-events beginning three days after the marrow killing chemo. It was thankfully hidden in the miasma of morphine and while I am quite certain I experienced something, it is lost in the mists. I now understand why that might be so, having had a couple more experiences later in the process of this illness which were very clear.

 

One of the side effects of chemo is a deeply depressed immune system. Infections of almost any kind can lead to fevers and a condition called rigors (pronounced rye-gores) – uncontrollable shivering. Rigors is a signal that things are quickly about to go very wrong and requires immediate application of fever reduction drugs and antibiotics to control the causative infection. The first few weeks in the transplant isolation ward were a constant series of rigors events followed by a crowd of caregivers administering intravenous antibiotics and morphine and doing whatever was required to control my vital organ functions and body temperature within a safe range. In my weakened and drugged condition I did not appreciate the frantic activity or the severity of the situation. In fact, I was finally put on constant IV antibiotics and given morphine on demand, supplied through a pump driven by a button pinned to my clothing. It was a very dreamy time. Food was supplied through the tube in my chest as were all drugs, blood products and fluids. At the time and given the high levels of morphine in my system and the generally poor condition of my health, I did not appreciate how many times I actually had to be rescued – and that was the term the staff used – it is not mine..

 

The chemo drugs were so toxic that my body wastes were considered to be a biohazard and while the hospital staff dressed appropriately to protect me, they were also very careful to protect themselves from the toxic effects of the drugs I had been given. Six weeks later, when I was finally able to begin eating and drinking normally (as opposed to through a tube) and fevers were not common events, I was punted from the ward and released to the care of family in Richmond. Following that I traveled to VGH three days a week for blood transfusions of various sorts and supportive medications. Three months after that I came home needing only weekly trips to my family doctor and the hospital in Campbell River.

 

I was warned to watch for fevers and given copious amounts of high grade codeine to control pain, digestive difficulties and fever spikes as well as sixteen or so other drugs to manage other things. I was also supplied with oral antibiotics which I was directed to take in the event of any infection which might lead to a fever. What I did not understand at the time is that oral antibiotics are a stopgap only until intravenous antibiotics can be administered – so the onset of rigors means an immediate trip to the hospital is required. To streamline this process, I was given a letter from the transplant unit at Vancouver General Hospital, printed on red paper, which allows me to bypass the emergency room process and as quickly as possible get into isolation and receive supportive care.

 

While this is all fine and good, one must realize that hospitalization is absolutely necessary and be prepared to go to the hospital at any time. It also assumes the patient will not be reluctant to go – as I was.

 

My first rigors event at home came late one night. I woke up to uncontrollable shaking and immediately took the maximum amount of codeine allowed and a double dose of oral antibiotics. I bundled up in a layer of blankets and sank into a drug-induced daze which thankfully led to sleep. What I did not appreciate at the time was that I very nearly did not survive the night. What I do remember before succumbing to sleep was a feeling of being completely disconnected from the world around me, becoming a small bubble of Mike in an empty universe. It was a very lonely feeling but not frightening. There was no tunnel with a bright light at the end – only a little bubble of me and infinity.

 

After later reporting the rigors event to my doctors, it was made very clear to me that the next one might be my last and I must get to the hospital as soon as possible in the event of another. Some time later that event came to pass. Again, I tried to control it at home but failed. What immediately followed was almost more memorable than the near-death experience itself.

 

The red letter did its job. I did not have to sit in the emergency waiting room. It was clear to the staff at the Campbell River Hospital that I needed to be in isolation so given no notice, the best they could do was put me in a supply room until a better space could be readied. While the thought was good, the supply room was in fact heavily used by emergency personnel and I spent the next five hours sitting in a chair – occasionally visited by doctors and nurses trying to stabilize my condition while the rest of the staff bustled through in search of supplies needed in their emergency facility.

 

My next stop was a private room all right, but because it was the best they could do on such short notice, was the TV room on the inpatient ward which had been hastily cleaned and had a bed wheeled into it. The nurses were masked and gowned however and I was given their undivided attention. Shortly thereafter and in spite of intravenous fluids, medications and blood products, the wheels fell off. My fever climbed out of control and my vital signs began to flag.

 

I remember stillness. It was not the quiet of the house at night but much, much more profound. As I unknowingly became more critically ill, my self-awareness actually sharpened but in a very strange way. The internal conversation we always have with ourselves started to fade away. The outside world became more like a paper cutout and I was a cutout within it. I could feel my body at an almost cellular level but the sicker I became, the slower the movement of the cells and the atoms which make up my body became. In an undefined amount of time (which had ceased to exist) everything stopped. I was whole but frozen in a singularity of silence, complete but trapped in timelessness within a frozen univese. In the normal world everything moves. We can even, in some small way, feel the hum and vibration of atoms. There was none of that. Nothing moved – not light, nor sound nor thought nor time. Had I been able to think or react I would have screamed just to shatter the absolute quiet and stillness. While I still had some sense of self, I was more connected to the universe than ever before, much like the cutout within the cutout – without internal conversation I became completely embedded in the reality in which I existed.The only way I can relate to it from a living viewpoint is to ask you to imagine your life as a movie and the film at the movie theatre breaks leaving the image on the screen frozen forever. You are in the shot and a part of it but not as a seperate individual. There is no way to remove or seperate yourself from the total image – you are just a part of it with no more ability to think or move than the image of yourself on the screen. It was that and so much more – or so much less.

 

It must have been shortly after some fairly aggressive medical intervention that I felt a few stray thoughts begin to move through my mind and they were that I was not ready to accept such a fate. I was not ready to be frozen in a single moment with no change ever possible again. While I was not really afraid, I was profoundly disturbed by the experience and totally unwilling to give up on the busy brilliance of human existence. Shortly thereafter in a strange time-warped way, that little bubble of Mike burbled out of the morass and rose like an air bubble from a diver’s breath to the surface of our shared universe.

 

I fully awakened in a third room, once a double ward room, then an office – now cleared and literally hosed down and disinfected with a single hospital bed in it and me in the bed – no furniture, no curtains and no exit. Given the very public spaces I had been in just previously, the isolation was almost funny. The staff were so very intent on maintaining that isolation. They entered only one at a time and only if completely masked and gowned and I was forbidden to leave. Meals were specially prepared, extraordinarily bland and sealed until opened in my room. Even toilet paper was missing – being replaced with sterile cloths which were removed as required. Thankfully, my recovery was swift and a few days later I was on my way home again.

 

It was only some weeks after that I was well enough again to realize what I had experienced. I am still trying to understand it today – almost two years later.

 

I am not yet ready to stop. There is too much joy in change and confusion. There is too much sweetness in the laughter of my children. There is too much sparkle in the sun on the leaves and too much pleasure in the aroma of a turkey in the oven. The very malleability of our living existence is like a drug I cannot give up.

 

One day I will give up – as will we all. I only hope it is a complete surprise because it looks to me like death means no more surprises.

Speak softly…..

October 9, 2008

 

Animal whisperers seem to communicate on a special level with the species they love. Whisperers work primarily with higher mammals and they all have a number of things in common, regardless of the species with which they work.

 

Probably the most common trait all whisperers share is that they work in the “now”. They recognize that one cannot change the past or own the future so the only successful strategy is to deal with every issue and every behavior in the moment. Higher emotions such as guilt, pity and fear have no place in the instinctual vocabulary dealing as they do with past events or future possibilities. These emotions and others like them can only be owned by the human and the dysfunction they cause in the human is transferred to the animal. In many cases, this is the singular cause of inappropriate behavior in that animal. Living the relationship in the moment removes complexity, disallows mirroring of dysfunctional emotions and allows interaction on a purely instinctual level.

 

The second trait they share is that they work exclusively from a calm, assertive centre. Regardless of the behavior of the animal they never lose their focus on being calm and assertive.

 

The third trait they all share is that they prioritize by starting at the most basic levels and then moving to those which are more complex. In an animal this translates to first addressing the animal, then the species, next the breed and finally the individual. The importance of this approach is that they begin at the simplest level and in doing so need look only at instinctual behavior, initially ignoring the complexities they will deal with later. By beginning at the simplest level they are able to immediately establish trust because the only complexity at this level is instinct. The task is to establish their dominance as a leader in a calm, assertive way and nothing more. Trust is a natural outcome from this approach.

 

Once that basic trust is established (usually very quickly) they begin relating to the species. It is only at this point that psychology begins to come into play. Some species are herd or pack animals; some are not and understanding how particular animals relate to each other within each species begins to be important as it determines how whisperers will tailor their approach to behavior modification. Animals which operate in groups are easier to manage as they more readily accept leadership from a dominant individual.

 

The next level of complexity is breed and of course each breed will have a unique imperative. Horses are bred to pull, jump, run or cut. Dogs are bred for sport, herding, hounding, working or other tasks. Understanding what drives the animal’s behavior (good or bad) becomes very important as fulfilling that imperative is the simplest way to initiate a trend toward balanced behavior. It is also the starting point for determining which kind of physical and mental challenge will most readily fulfill the imperative and in doing so most easily disrupt inappropriate behavior without needing to resort to or depend upon discipline.

 

Only when these three levels are dealt with does the whisperer begin to deal with the individual personality.  While people tend to humanize animals – and in doing so give this level of interaction the greatest weight, it is in fact the least important in whispering. A successful whisperer uses an animal’s “name” only to trigger specific, trained behaviors. Included in this level are the other forms of communication which might involve verbal commands, hand signals and sounds. It must be recognized, however, that without first establishing trust, asserting dominance and exercising an animal in a breed appropriate way, trained behaviors are not easily accomplished or consistently achieved.

 

Another common understanding among all true whisperers is that they appreciate the hierarchy of exercise, discipline and affection. While these simple terms can carry a universe of complexity, they can also be taken at face value and still work effectively in behavior modification.

 

Exercise can be just that but it can mean so much more. Any animal which is neurotic, aggressive, excited or nervous cannot maintain that state if exercised until tired. An animal which is being challenged in an appropriate way will tend to break from its unstable state and revert to a baseline instinctual behavior. In that state it is much more malleable and accepting of behavior modification. Exercise is the most basic of challenges and has good success in behavior modification because of that. It is also fairly easily understood and implemented in species and breed appropriate ways.

 

Discipline is critical but it is important to recognize that it is not punishment. Discipline is really only expecting proper behavior without negotiating, commanding or asking. It is comprised of addressing the problem and then following through with the expectation of proper behavior. The nature of the discipline depends entirely on the species. Discipline for a dog is simply a firm touch in the neck or haunch. The purpose is ONLY to break the animal from its unstable state without hurting it or fostering distrust. Instead, one is simply setting rules, boundaries and limitations and consistently following through in a calm assertive manner.  Punishment almost always springs from anger, excitement or fear and only serves to translate those emotions back to the animal. This transference will reinforce or escalate the animal’s dysfunctional state.

 

Finally, only when the animal is in the desired state can affection be appropriate. It is the reward for desired behavior. One can love an animal but should only show affection as the reward for desired behavior. Affection at any other time only serves to reinforce the behavior prevalent at that time and so is totally counterproductive.

 

There is often no quick fix for profoundly dysfunctional behavior so patience is often required. Tension in the relationship will be picked up by the animal so staying in the moment with a calm, balanced and assertive attitude is critical.

 

This is all fine and good but for one more thing. Whisperers do not try, they do. Successful singers don’t try to sing. They sing. Famous actors don’t try to act. They act. Gold medal swimmers don’t try to swim. They swim. The common thread is that to be successful, one needs to DO. It helps to be centered, calm and confident. Success will follow. Response from the subject is purely a reflection of the whisperer so half-hearted commitment will result in flawed results.

 

Before we move on, remember this is only the barest summary of whispering and while it covers the main points is by no means the totality of the subject.

 

Here is the twist.

 

Man is an animal and a higher mammal and really not so different from other higher mammals. Until fairly recently it was commonly believed that what separated us from all other animals was our ability to displace. However, we now know at least one other species exhibits displacement and a number of other mammalian species are proven to have complex “languages” which we are not yet capable of deciphering. Certainly mankind has raised the bar when it comes to achievement but our roots are closer to the surface than many are willing to admit and so the tenets of “whispering” should apply just as well to man as to any other animal. It certainly removes much of the complexity from the search for appropriate treatment for dysfunction. It would not apply of course to psychiatric disorders or behaviors triggered from purely health related problems which are better treated through medical intervention.

 

Let’s apply the basic tenets of whispering to humans who might be maladjusted but otherwise whole. As a human whisperer we must be calm and assertive at all times and never lose our patience. The primary goal is to never intensify a bad situation with inappropriate behavior on our part. We must live in the now and refuse to allow guilt, pity, anger or any other strong emotion which might be present due to past interactions. We cannot fear for the future as we can transfer that personal imbalance to the person with whom we are interacting. If nothing else, removing these destructive emotions from the equation is profoundly self-empowering and sets a brilliant example for the person on whom we wish to have effect.

 

We begin then by gaining the trust of our subject on the instinctual level by first being completely consistent in our calm, assertive behavior and secondly by responding to the most basic needs of the subject. These needs are food and shelter – which are provided without conditions attached and without reservation. There are no exceptions to this rule. Basics do not include Nintendo, motorbikes or iPods. These are rewards for appropriate behavior. When an individual escapes into gaming, music or other secondary pursuits in place of respectful interaction with the family unit, those behaviors need to be controlled and access to them treated as rewards. They can be given as rewards for good behavior at any time but in appropriate amounts.

 

The species in this scenario is human. We are a pack (tribal) animal and so the whisperer must take the role of pack leader and be calm and assertive. Pack leaders expect calm, submissive behavior from the pack and NEVER back down in the face of inappropriate behavior. They also never lose their calm, assertive centre. There is an expectation that everyone in the group will work to the benefit of the group to the best of their ability in an age appropriate way. An absolute expectation of respect is a good starting point.

 

Breed can translate in humans to culture. Culture is an enormously strong imperative and can become a very complex issue particularly when dealing with mixed cultures (such as Indo-Canadian) but for our purposes we will keep it simple. In our case, culture addresses functioning within a family unit and expecting behaviors which are appropriate within a family. Those might include bathing, respectful behavior, completion of duties which support the family and other such things which are required by law such as attending school. Again, these behaviors are non-negotiable and by creating challenges which are sex and age appropriate we are more likely to break an individual from disruptive or destructive behavior and find success in achieving balance. The greatest hurdle for the whisperer is to use the environment to arrive at creative solutions which provide those challenges. We need to remember that a thoroughly challenged individual cannot easily maintain a dysfunctional attitude.

 

Finally, we can begin to deal with the individual as an individual. If we have been calm, assertive, patient and consistent in our own behavior our likelihood of a favorable outcome is greatly increased. It is only once we have succeeded with the previous steps that we can with all fairness expect such things as better marks in school, practicing the trombone without being asked and vacuuming just because it looked like it needed doing. For some funny reason, humans are motivated by positive feedback and it is at this point that rewards become more appropriate. Rewards can and maybe should be offered for all appropriate behavior – even very early in the process, but should be tailored to the situation. One does not reward taking out the garbage without being asked by buying a gift which reinforces undesirable behavior (such as a computer game for a game addict). It is also important to understand the difference between love and affection. Unconditional love is almost better expressed with calm, non-judgmental, supportive behavior on the part of the whisperer while affection is expressed through rewards.

 

When we overlay the trilogy of exercise, discipline and affection (all of which have been mentioned previously) our ability to have a positive impact on a relationship improves even more.

 

Choosing breed appropriate exercise for a dog is relatively easy. Choosing age and sex appropriate exercise for a human is somewhat more complex. Issues such as interests, abilities, costs and time constraints need to be considered but this should not be a stumbling block for the human whisperer if failure is not an option. It simply becomes a matter of deciding what is possible and appropriate and making it happen. The reward for both the subject and the whisperer is a fulfilled, tired and pliant subject.

 

Discipline might on the surface seem to be an even more slippery slope but if considered first from the viewpoint of self-discipline becomes somewhat more decipherable. Successful self-discipline is a matter of deciding what behavior is appropriate and then following through with it. Discipline is simply a matter of transferring that concept to another individual. Again, discipline must not be mistaken for punishment. It is simply a matter of setting rules, boundaries and limitations and then sticking to those guidelines without exception. The guidelines need to be as achievable in an age and sex appropriate way for the subject to fulfill as they are for the whisperer to enforce. Starting with simple expectations might be smart but the framework really must be tailored to the individual and the situation.

 

Affection is the easiest to give and the most difficult to give appropriately. We must remember that affection is not love. Instead, if we correlate affection with reward we are closer to meeting the standard for whispering. Small rewards are given for small successes, big rewards for big successes. Since this issue was discussed previously in this essay, no more needs to be said at this time.

 

The final word is a simple reminder. Any imbalance or strong emotion in the whisperer will be reflected and magnified in the subject so remaining calm, centered and assertive is beyond critical. A whisperer must work in the moment. Fears of failure in the future or guilt from failure in the past are destructive for this process. Whispering and judgment are mutually exclusive. Being judgmental requires living in the past. Love is always and forever required but affection is given for appropriate behavior. Last, but not least, patience and repetition are both sides of the same coin but repetition without patience will not work. Impatience foments tension and is counterproductive. If a whisperer is truly functioning in the now, patience is a given.

 

A successful whisperer is successful not because his or her subjects are fixable but because the whisperer is confident, centered and calm.

 

Speak softly and there is no need for a stick.

Baby give me one more chance

September 14, 2008

 

Amyloidosis is a rare and often fatal disease which is characterized by a build up of abnormal proteins in body tissues and the major organs. The exact cause is unknown and there is no known cure.

 

In healthy individuals, antibodies (white blood cells) are produced by the bone marrow, enter the blood stream to fight invaders and are recycled. Amyloids are antibody proteins which cannot be broken down by the body and so eventually leave the bloodstream, becoming deposited in tissues and organs. This deposition affects normal function and can lead to organ failure. As much of the white blood cell production is abnormal, infections – including fevers can also be fatal.

 

Symptoms include edema, weight loss, difficulty swallowing, irregular heartbeat, numbness or tingling in the extremities, shortness of breath, weakness, severe fatigue, diarrhea and skin changes.

 

Amyloidosis is currently incurable but several therapies are being studied. One, which has extended the lives of many patients (me included) begins with high-dose chemotherapy to kill the bone marrow, followed by a bone marrow transplant. While this almost never (if ever) stops amyloid production over the long term, it can extend life spans and in some cases reduce amyloid production post-transplant. Ongoing chemotherapy (see “Understanding Chemotherapy” below) is then intended to support the major organs while amyloid proteins are shed, control the more devastating symptoms and bolster the immune system.

 

Enormous effort is being expended to understand amyloidosis so the longer patients survive, the better the chances are that more effective therapies will be found or a cure will be discovered.

 

I live for that.

Going my way?

September 13, 2008

 

One of the primary reasons cancer treatment has advanced so quickly is the infusion of money from an aware and involved community. One of the main reasons I (and many like me) have survived  is the amazing support of the Freemasons/Canadian Cancer Society Volunteer Drivers program. The volunteer drivers essentially take cancer patients and their escorts to and from their appointments. Distance is not an issue. The trip can be from home to the hospital and back or from home (in my case Campbell River) to Vancouver and back. No matter. When I have been too unwell or too medicated to drive, I know who to call.

 

Locally it starts with Anne Marie, our dispatcher. She has an unfailingly can-do attitude and a lovely personality. Her feeling seems to be that her “clients” have enough to worry about without having to think about travel arrangements. Give her enough lead time and she can get you where you need to go, no questions asked, don’t worry. If she isn’t there to pick up her phone, she unfailingly returns messages. When she arranges a trip she always calls to confirm. Always. Her pay? The satisfaction of a job well done. Possibly the reward of knowing she is doing something fundamentally good. All this and her “clients” keep dieing on her. She sucks it up and keeps on going – always polite, always pleasant.

 

The van travels from Campbell River to Victoria three times a week if there are enough passengers to warrant a trip. Otherwise it will connect with a van from another community which has room. If there is only one passenger and no van traveling from another community, no problem. Two drivers pick up the passenger and take that passenger to Victoria. They take cancer patients where they need to go and then take them home. The van is clean, modern and comfortable.

 

The local drivers donate a day every month or so and two of them make the trip to Victoria, sharing the driving duties. They too are unfailingly polite and pleasant. Many of them have either been touched by cancer personally or have had a significant other affected by it. It shows. They drive with their passengers in mind.

 

In Vancouver, the experience is similar. As an outpatient following my transplant, the volunteer drivers initially took me from the Jean C. Barber Cancer Lodge to the hospital – just a few blocks. Then, for some months, they transported me three times a week from Richmond to Vancouver General Hospital and then took me back, often a trip of an hour or more (depending on traffic) each way. In many cases when my appointment ran late, the dispatcher took me to Richmond in his own vehicle. Today, they pick me up at the downtown bus depot (I ride across from Vancouver Island on the Pacific Coach Lines bus) and take me to my destination – any destination in the GVRD. The drivers donate a half day a week of their time. Their cars are clean and modern and comfortable.

 

You might wonder how someone on disability can afford what is essentially a limo service. The answer is surprising. The Freemasons/CCC Volunteer Drivers program depends on donations. While it is clear they accept donations from their passengers, they are not aggressive in seeking them. Their clients seem too important to them, too fragile to harangue. If one cannot make a donation, absolutely no mention is made of it. I cannot say too much about this service or speak too highly of their people. It is an absolute fact that if not for them it is unlikely I would have survived this long. Their willingness to handle any request when I was too weak or ill to deal with anything but making it until the next day has been extraordinary. Their clients are unfailingly weak and ill. The dispatchers and drivers are unfailingly pleasant and dependable. Their service is invaluable. I think the only reason they seem to shun publicity is that they would be even busier than they are today and would have trouble coping with the increased demand.

 

The Freemasons/Canadian Cancer Society Volunteer Drivers program is, without reservation, the finest example of community service in action.

Understanding Chemotherapy

September 10, 2008

Please recognise this is done more for my clarification and understanding than for the future reader of this posting, but if you care to wade through the maze that follows, please read on.

In January of 2005 I had a bone marrow transplant. I was not expected to survive the procedure. I did. Morphine and food through a tube in my chest made the following few weeks a dream. Eighteen months later the cancer had returned. While I had enough T-cells for another transplant, the risk of  not surviving a second was deemed to be too high. Chemotherapy or bust? I chose chemo.

What is truly extraordinary is that most of the many drugs I take in this chemotherapy regimen are acting in a way for which they are not commonly prescribed.

Thalidomide was originally developed by a German chemist who worked for the SS in the field of chemical weapons research. After the war, it was determined the drug was an effective sedative/hypnotic, but due to an unforgivable oversight (it was never tested to see if it crossed the placental barrier), was further developed and marketed as a sleeping medication and a palliative for morning sickness during pregnancy. The rest is history. Since then, however, it has been found to be an effective treatment for certain cancers and HIV, among other things. While  the mechanisms are not well understood, it seems to mobilize the immune system to take advantage of what the other chemotherapy drugs are doing.

When Thalidomide is taken with Dexamethasone, there is an “improved response rate” of up to 70%. Against cancer this is very good. Dexamethasone is a synthetic cortisone and is generally used to treat inflammatory and allergic disorders and is an immunosuppressant. In cancer treatment it is part treatment and partly management of side effects – primarily nausea. It also reduces sensitivity to the side effects of other chemotherapy drugs.

When taken together these two drugs cause greatly increased rates of blood clots, so I take aspirin every day. No headaches anyway…..

Cyclophosphamide is an immunosuppressant and is generally used to treat Lupus (and therefore serious kidney disease – a negative side effect of amyloidosis) and other disorders such as rheumatoid arthritis. It works by interfering with DNA to keep cells from dividing – leading to cell death. This is very good when targeted against amyloidosis and multiple myeloma but hard on the blood. It means regular transfusions of packed red blood cells and immunoglobulins (basically white blood cells). So every couple of weeks I spend a quiet morning in the hospital reading and getting “topped up”.

Next on the list is Rabeprazole. It is generally prescribed to treat too much acid in the stomach but one of the nasty side effects is that it lowers blood pressure. But wait, transfusions increase blood pressure and amyloidosis adversely affects the kidneys (among other things) so decreased blood pressure actually helps the kidneys. Everything that helps is good. Another side effect is that it causes lung congestion so I take Pseudoephedrine.

Pseudoephedrine is the active ingredient in cold medications and works by narrowing blood vessels. I have never breathed so well and the scent of the forest out my back door has never been finer.

Codeine phosphate is ised to moderate pain and in concert with other drugs to reduce coughs. In this chemotherapy regimen it is primarily used to sedate my digestive tract as amyloidosis and the other chemo drugs have made it painful and overactive.

Next is Furosemide. This drug is a powerful diuretic and is used to treat fluid accumulation and swelling caused by, in this case, kidney damage from amyloidosis. Another effect is reduction of blood pressure, so this is good.

On to Clarithromycin which is generally used to treat bacterial infections. As amyloidosis and the chemo drugs which treat it cause suppressed immune function, fevers can be fatal and infections are common. Clarithromycin protects agianst those. It is very hard on digestion and makes one feel quite awful but that is somewhat resolved by some of the drugs already mentioned and by Ativan.

Ativan is usually prescribed as an anti-anxiety drug, but when used in concert with chemotherapy is an effective antinausea drug and reduces the impact of muscle spasms caused by the diuretic effect and electrolyte depletion of Furosemide. Makes me feel goood too.

Add Quinine sulphate, generally used to treat malaria (and paralyse peccaries at the tip of a blowgun dart) – but in my case to reduce muscle spasms. 

Take all these pills together and that is a BIG lunch. Add Folic Acid, vitamins and a couple of other antinausea drugs and there is desert.

Hydrogen peroxide and antibiotic creams keep my skin from falling off so I’m good.

See? It really does make sense. It works too. So I can’t walk very far or talk very well but I wake up every morning. I can hug my kids (and communicate my love to the one who lives far away) every day and I can hope that at some point in the future all these drugs will finally whip my illness into submission and I will get better, faster – than I do today.

What could there possibly be to complain about? Really!

Fighting cancer

September 10, 2008

 

People wonder at my continued survival but it is no mystery. I have felt the stillness at death’s door and decided I have not had enough of birdsong when the sun rises through the forest or the laughter of my children ringing in my ears. The danger comes in wanting too much and becoming lost in one’s desires, diminished by depression; wishing to be what one once was.

 

A tree does not turn to dust when it is chopped down and turned into a fine piece of furniture, it becomes a fine piece of wood furniture. It becomes. There is a future in becoming..
 

On –

September 9, 2008

Doctors

A guy goes to the doctor. He has a cucumber in one ear, a sausage in the other and a pineapple up his nose. He says to the doc “Doc, I’m not feeling well. What is wrong with me?” The doc replies “It’s obvious. You are not eating right”

Doctors are always telling me I’m not eating right and I have yet to find a pineapple up my nose…..

Fan worship

I don’t like movie stars, popular musicians or any other famous people. They tend to be SO narcissistic. Every time I have hung out with one they only want to talk about themselves and NEVER want to talk about ME.

Climate change

Recent findings in the geological record show that volcanic activity has increased threefold in the last 1000 years. This means a threefold increase in greenhouse gases, acid rain and atmospheric particulates. These increases predate the industrial revolution by many centuries and the number of cow and sheep farts previous to that are insignificant (although they are one fifth of modern “emissions” and attributable to mankind as keeper of cows and sheep). 

Modern industrial emissions total about one tenth of current volcanic output. and while they are laden with man-made chemicals, heavy metals, carcinogens and other nasty stuff, the atmosphere just doesn’t care. What is true is that even if mankind were to reduce their output to zero, global warming would still be a fact. This is not to mean we should just carry on polluting. Nooooo. We must clean up our act or poison the earth. But, we must also prepare for the effects climate change will bring because whatever we do, climate change will happen. Change is good, right? Hmmmm. If you live at sea level you might want to look for a house in the mountains.