Hi again!

I am going to start this second page off a little differently, and answer a few questions that have been posed to me.

What is “Chemo” and how is it taken?

I didn’t think, until recently, much about this question, I guess because I was sick (he he), but was recently asked about it, so I thought I’d answer, for all of you who don’t want to ask.  Cancer is a very scary proposition, but most of the scariness comes from the fact that we usually don’t know much about it. I was one of the “lucky” ones, I guess.  In the 70s my mother-in-law had cancer, and I helped nurse her through 18 months of illness.  There was much I still did not know, however, and much of what I did, had changed in the intervening years.  I knew nothing about chemo, because she did not have it.

che·mo·ther·a·py (km-thr-p, km-)

(Medicine)

The treatment of cancer using specific chemical agents or drugs that are selectively destructive to malignant cells and tissues.

 I found this definition on the Internet, and it is almost correct as far as I know, and as far as it goes.  Chemo, as it is commonly called, however, is not very “selective” at all, and attacks a lot of things in your body, as well as cancer cells. It does not discriminate, and attacks good cells as aggressively as it attacks bad cells. This is a case of the treatment being almost as bad as the disease; or it was so in the beginning.  As I understand it, chemo kills fast-growing cells in the body, and since cancer cells are fast-growing, this is why chemo is good at killing it, even though cancer is so aggressive.  Chemo also kills other fast-growing cells, and this designation includes hair and nails.  It kills all hair indiscriminately; hair on your head, eyebrows, eyelashes, hair on your legs; all hair on the body.  It also affects your nails, and can deform them, or make them fall out.  It also can cause problems with your eyes, and other body parts not in view, but perhaps more importantly for a normal life.

Chemo has come a long way since I nursed my mother-in-law with cancer, in the 70s.  Newly developed drugs, good for specific cancers, and taken in specific ways, often perform well.  Some are so-called “wonder” drugs for the right situation.  It is not a simple thing to develop a chemo drug, and they must test it for all specific types of cancer that it will be used for, as I understand it, to get it accepted by insurance companies.

This is important information, because, although all medication is expensive, and cancer is certainly no exception, treatment is very expensive.  For example, there is a “new” drug that’s been on the market a couple of years that I should be taking, according to my doctor.  It’s called Iressa, and is a tablet. It is not toxic, and is not a chemo drug.  However, it has been through extensive testing for lung cancer, and a very simplified explanation is that it does something to active cancer cells so they cannot recognize the cells they need to feed on, to grow.  Consequently, if you do get some stray cells, they die for lack of food.

The reason I’m not taking Iressa now, is because it costs $60 per pill.  That is a cost of $1800 per month.  Now, I realize this is my life we’re talking about, but I’m already spending more than $400 a month on just my prescriptions, all necessary, and I simply cannot afford these pills and live in a house, or pay for a car, on our limited income.  So,  I have applied to a patient assistance program, to provide assistance.  They do have these programs, but it is kind of a slow process, at least in my case it has been. We’re hoping to get it anytime now.  Medicare is supposed to begin paying for this medication sometime in 2006, but I really can’t wait another year or more to start this.  I have been very blessed thus far, but my doctor is concerned that will not continue.

Now, back to chemo.  Although I knew about cancer, I essentially knew nothing about chemo when I began this treatment, and I found the information about it quite interesting.  Chemo is not a simple shot, in most cases, that you simply walk in to a doctor’s office and get, and then leave.  In most cases it is given as an “infusion” that is put into your veins in an “infusing room,” of course. 

In Fairbanks, Dr. Michael Carroll has developed a cancer center in partnership with the hospital, where treatment is given.  In Bend, my treatment was given at a clinic, in an infusion room.

An infusion room is a large room dedicated for this purpose, with an adjacent nurse or technician’s room, restrooms, and some connected private rooms where very ill patients can receive treatment. 

When you walk into the large common room, you are immediately struck by the casual, friendly, family-type atmosphere, especially since everyone in there but staff is connected to a tube, and if they are moving around they have to carry their apparatus along with them.  Dr. Carroll spent a lot of money in making his infusing room as pleasant as possible.  There are at least a dozen very large, special-made, comfortable recliners distributed around the room, covered in purple leather… a very classy shade of purple.  There are glass display cases, tall and slim, showcasing purple art glass, soft music playing on a stereo player, and dozens more available. There is a large desk and counter in the center of the room, and the staff is very friendly.  There are some patients who sleep most or all of their time there, but the others chat between themselves, or with a friend or caregiver who has come with them (Jim is my caregiver).  There are other chairs around the room, a couch, and roll-around stools, that are mostly used by staff when beginning your treatment, or ending it.

After taking a seat, the first available technician helps you, unless you have formed a relationship with another one, and they’ll be free very shortly to help you.  I formed a quick friendship with a technician named Marilyn, and she was very nice.  She was also very, very good with needles, and that’s important if they have a hard time finding a vein.  If they are not extra-good, you will soon have hands and arms full of big bruises all the time, and painful ones, to boot.

Marilyn could insert a needle and I never felt it. I never had a bruise, either, unless someone else had to do it.  Dr. Carroll had hand-picked all his staff, and they were all completely devoted to him; he was very good to work for, and the good personalities on staff did a lot to foster the family atmosphere at the clinic.  One counter on a wall was devoted to food.  Because some people have a difficult time eating while taking chemo, and because the treatments are easier on you if you eat, he personally stocked a refrigerator in the room with all sorts of sodas, juices, and fruit drinks, along with other goodies.  The cupboards there were full of chips and crackers, and there were always plates of goodies from the bakery sitting about with cookies, donuts, cakes, and other tummy-tempting foods.  The coffee was always on and hot, and many people kept their own mugs there. 

Having a chemo treatment took a minimum of two hours, and the last ones I had took six hours, start to finish, and then I had to come back the next day for additional stuff. 

Each person had his personal schedule of treatments, worked out personally with Dr. Carroll, for the entire round of treatment.  Many were done weekly, since having it that often meant you did not have to have such strong doses. However, in some cases, the treatments were scheduled every two weeks and a particularly strong dosage was recommended, to be most aggressive against the cancer.

After preparing everything for your dose, your technician brought it all over.  They urged you to think of it as a meal… you received the chemo in one bag, if you were lucky, and in more if you were not.  Then, they put shots directly into the tower of tubing, shots that contained some kind of steroid like Prednizone (sp?) to counteract any allergic reaction you might have.  You received another drug to counter nausea and vomiting; and a third was your dessert, I believe it was Ativan, that put you to sleep, or relaxed you at the very least.  Some chemo was very hard on either kidneys or liver, or both, and required that you have additional fluid injected with the chemo.  So, after injecting all the medication, and giving you several additional pills to help you tolerate it further, you were left with one or more bags of fluid, and they went on to the next patient.  First, however, they made you comfortable.  Your chair was put back, and you were asked if you wanted something to eat or drink… whatever your heart desired.  Then, a bag of something (it varied) was warmed in the microwave to keep your hands and arms warm, and you were covered with a very large purple blanket.  No matter what the temperature was outdoors, or how you were dressed, having cold fluids injected for hours makes your hand and arm, especially, very cold.  Usually you were asleep within a few minutes, and slept about half an hour to an hour.  After that there were magazines to read if you didn’t bring something, and some books lying around, too.  If someone came with you, you could chat.  And, the staff (who did a lot of joking around) did not ignore you, by any means.  You felt very welcome, and like you had the run of the place.

Some people became very ill from the chemo they were taking, but only once was there someone who actually threw up while I was there.  There were some people in just about any stage of cancer, from the new ones, to those who were gray, with huge circles under their eyes, scars all over from surgery; people with hair, without hair, with wigs, without wigs… it was your preference, and they kept a huge box of wigs that had been donated by past patients, if you wanted to try one. 

When I took the radiation it was in a separate part of the same clinic, and I had a special radiation oncologist.  Your plan of attack is worked out, and they have to build templates to be used before you can begin.  Since radiation can seriously burn you, they try to be as careful as they can, so they work out a path… it is done with a metal “jig” type thing, to target the area of the tumor without doing any more harm to other organs than necessary.  When working on the portion of the chest where my tumor was, the esophagus is impossible to shield completely, and your bronchial tubes are also affected.  They actually do two templates, so they can vary the angle part-way through, and hopefully making the side-effects less serious.

Your treatments themselves take very little time.  It takes more time to disrobe and re-clothe yourself than the treatments, if you didn’t have to wait.  There is not usually a long wait, however, and the treatment I had was for 23 seconds in front, and then 23 seconds in the back.  You are lying on a big table, placed in the center of a large ring that surrounds you.  After the first 23 seconds of radiation it stops, and the ring rotates to its particular location for you, the template changed, and you get another 23 seconds from the back side. 

I knew even less about radiation than chemo when I started, and it seemed pretty simple and non-invasive at first, but within a couple of weeks, things changed.  My throat (esophagus) felt like it had a huge “lump” in it, and it became difficult to swallow.  It was very sore.  And then, I began developing burns… you know, sunburns?  I had burns on both sides, but my back was the worst. Be the time I finished the treatments, it felt like raw meat all the time, and it took it quite some time to heal. It peeled forever, just like a normal sunburn, except it was much worse than any sunburn I'd ever had. They’re not sure why the back gets worse, but think it must have to do with being next to the table surface.  I received a graduation certificate when I finished, and Jim complained loudly because he did not receive one… after all, he came every single time just as I did.  They scrambled around and were actually going to print one for him, but whoever was there could not get the program to work in the computer, so he didn’t get one.

Some facts about radiation: The effects of radiation do not become apparent for some time after finishing treatment.  It takes about three months from the time you begin for the effect to be fully active, and is residual, meaning that it continues to be effective for months afterward (at least 3 months afterward, and perhaps up to twice that long).  So, they don’t know exactly what the treatment accomplishes, because by that time you are taking another round of chemo, so who knows what helped what.  All I know is that the tumor was nearing the wall of my lung when I began the treatments, and it never got there.  I never felt any pain whatsoever.

I had two biopsies done during my treatment, the first a needle biopsy to determine if the tumor was malignant.  To do this you go into a CT scan room, and successive cat scans are done while the doctor has a long, large needle inserted, from the back near the shoulder blade, into the area.  If it had to be moved, it was moved a bit, according to whatever they saw on the cat scan, with you, all the while, lying in an awkward position, hold your breath the entire time.

One of the problems that can develop from this is a collapse of the lung, and they don’t know why it sometimes happens.  Mine didn’t collapse completely, but I did have a partial collapse, which they were able to correct, but that is when I began to cough, and I also began having a bit of trouble with shortness of breath after that.

Later on, the heart specialist did something, a “---------oscopy” (I’ve forgotten the name), to see if my lymph nodes were affected, and if so, were just the ones on the right side affected, or those on both sides.  It makes a big difference, you see.  Although they are all lymph nodes, and very close together, if those on the left had been affected, my tumor would be known as “metastasized,” meaning it had spread from the right lung to the left… and it might as well have traveled to my toe, because if that had been the case, I would have advanced to a stage four cancer, and surgery would not have been an option.  Although the surgery was never performed, it was still a relief to know that the cancer had not metastasized, at least not at that time.

 There is a big step taken when that happens, and it is something every cancer patient who is not a stage four, dreads.  There are fewer options for treatment, and the cancer is more aggressive at that stage.

After you become familiar with the treatment, the clinic and the people, patients and their caregivers tend to take care of some things themselves, helping to free-up technicians so they can provide personalized help to any who are in need.  And, I know first-hand that they do provide that service, and they do it very well.

One of the hardest lessons that you learn with cancer is that it destroys your personal privacy, and what my mother would call your “dignity.” I think now that is one reason why infusing is done in a common room.  The first time I entered one of these rooms was in Bend, when I was very new to cancer treatment, and it was a very scary thing for me.  The infusing room here is (in my experience, anyway) busier, with people, doctors, technicians and others running to and fro, and you feel more than a bit lost.  

There was only one chair the first day I entered this new realm, and I felt very small and more than a little confused about what to do, and what to expect. There was no place for Jim to sit, close to me.  As I sat and waited for something… I didn’t know what, my attention was drawn to the chair next to me, occupied by one of the largest men I’d ever seen.  Large as in very tall, and large of frame.  His hair was gone and his head uncovered.  He had numerous scars about the head, and I saw as he arose to get something, he walked with difficulty, and two canes.  He smiled at me, and quietly and calmly he put me at ease.  It was clear he had been a patient here for some time, as he seemed to know everyone, and many people stopped by his chair to speak a few words, tell a joke, or just pat him.  He showed me how the chairs had a built-in tray on each side, so you could rest food and drink, and the technician could place whatever was needed for your treatment as they prepared you for it.  While he was not forward, he soon had me feeling more comfortable as I waited to be taken care of.  I was very grateful for his help, and was more than ready when it came my turn to help someone in the same situation, later.

If treatment was done privately a cancer patient would miss something very important to their cure.  Since cancer is so feared by those who don’t know much about it, a cancer patient sometimes finds that they are treated differently by some, or sometimes most, of the people they know. With the onset of cancer, you have become very different from them, and they do not know how to handle the situation.  It is possible that some who are good friends, no longer even contact you, because they don’t know what to say or how to say it.

By receiving treatment along with all the other patients, you are thrust into the middle of a group, where you probably would not venture if given a choice, and the close association with others helps to de-mystify the illness, and in turn helps you begin to deal with it, and treat it as normally as you can, yourself.  Because, like it or not, your life will be turned topsy-turvy by this illness. Nothing at all will be the same, because you will be unable to look at anything in quite the same way, again.

Jim “took” every treatment with me, and that is fairly common, especially if the caregiver comes, runs a few errands while you sleep, and then returns to sit with you during the rest of treatment. It is funny, because we lived in quite an out of the way place in Alaska, populated by only a few hundred people, that a friend and neighbor who attended the same church we did, was diagnosed just a few months prior to the time I was.  Then, in the infusing room, we found another neighbor, living just a couple of blocks from us, having treatment; and all three of us had lung cancer, although there were differences in our cases.

Before long, Jim made us “to-home” when we entered the infusing room for treatment.  Helping me get settled, he got a blanket from the closet, to get me started warming up, as the room always felt cold, as hospital and clinic rooms often do.  He would then get me something to drink if we didn’t bring something, and some snack, if something looked appealing to me.  After I was settled he made himself a cup of coffee and then settled into a chair to the side of me, to wait with me.

Since Jim is always friendly, he joked around with this or that technician, but one day, however, he really created a sensation, and was quite well known by all the staff afterward. 

With time, I had settled on one chair that was my favorite, and I always chose that one if it were unoccupied, which it usually was.  It was near the coffee for Jim, faced the entrance so I could watch the comings and goings without even turning my head, and had a clear view of the wall of windows that faced the lawn and trees outside.  We watched many times, a technician slip one of the small arm pillows that were heated, into the microwave above the counter, punch a button (just one), and walk away to return and retrieve it, heated, very shortly.

On this day they were overcrowded and busy, somehow, and perhaps short of staff.  Since patients have reduced auto-immune systems, the staff did not come to work if they caught cold, or flu, etc., so as not to pass it on to patients.  Well, whatever technician I had forgot to get me a pillow, and Jim noticed I was trying to cover my arm to get it warm, so he got up to warm a pillow for me.  He put it into the microwave, looked at all the buttons, and punched “reheat.” It sounded logical to him…

Well, evidently the technicians punched start for heating the pillows, and as some microwaves do, it automatically heated it for one minute and shut off.  However, punching reheat was quite different; it began a cycle meant to heat a cup of coffee, or water, etc., and ran for more than two minutes.  We were talking when the microwave exploded….

After the excitement died down, the smoke cleared, and everyone in the building (it seemed) had run in to see who had been shot, Marilyn stayed late to clean it all up, as it was near closing time when this happened late in the day.  Jim apologized profusely, and offered to help, but she told him he had done quite enough!  He had earned quite a reputation, and was completely banned from using the microwave, forevermore.

Over a year’s time we came to know the staff at this clinic well, and not only liked everyone, we were very appreciative of their expertise and their kindness.  They were all “jewels,” and truly had become a family to us.  I cannot recommend this clinic, and Dr. Carroll, highly enough.  It is excellent care, where it is sorely needed.

Near the end of my treatment, when I began my last round of chemo, I was apprehensive.  My friend and neighbor had been taking the same thing, and was not feeling well.  On the other hand, as I’d start each round of chemo, Dr. Carroll would say “Now, you will lose your hair with this type of chemo, and …” but none of his dire predictions came to pass.  He knew I was concerned about losing my hair, and only because I have never been able to wear my hair close to my head and look anything but terrible and foolish.  I envy people who can do so, and there were a number of women patients who looked almost stunning without hair.  It served to accentuate their good features.  I just knew that on me, it would only serve to accentuate my flaws, of which there are many.  It was pure vanity.

With this last chemo, however, all his predictions came true, and I lost all my hair, and not only on my head.  It is amazing how a simple thing like “no eyelashes” can change your looks.  And my looks had already changed over the course of my illness.  I aged about ten years, in less than five.  I had always looked young for my age, but I passed it way up during this time.  I bought a wig, but could not stand to wear it.  Since Alaska has such long winters, and it was winter when I lost my hair (November 2003), I wore a stocking cap.  Jim finally cut it for me, when it was falling out in clumps that never seemed to stop, and there was still a considerable amount to go.  It was quite amazing to see just how many individual hairs there are on your head.  Once he had it cut as near the scalp as he could, however, I made the mistake of looking in the mirror as I cleaned hair from my face, and then refused to allow him to shave it.

Everyone I knew, and lots of relatives, all said it would grow back in quickly, and be very curly… everyone’s did.  Ha!  Quickly it did not do, and it is as straight as it ever was, but it is still thick as it used to be, and it is HAIR.  For that I am very thankful.  My eyelashes are no longer curly, as they’ve been my entire life, and my eyebrows have a couple of holes that were not there, and all these things affect how I look, but I’m not complaining, just commenting.  It happened.  I am alive, and I feel well. That is all that is important to me now.

I cannot have a permanent yet, a friend who is a beautician told me they do not give them for two years after losing your hair to chemo, so I am back to setting my hair as I have not done for many years.  However, when I do, it looks full and thick, and although it has lost some of its color, it is a huge improvement over not having hair at all.  Since it took so long to grow out, it has only been long enough to really do something with for a few weeks, and we are still getting used to it again.  Having hair is nice.

So, what is going on now that I am no longer having treatments for cancer, etc.?  Well, I am told that it will be a year or more before my auto-immune system recovers, so I am remaining a recluse for now.  Especially with the concern about flu this time of year.  Last winter I stayed in, and caught colds from Jim that were difficult to get rid of.  And when you are in a weakened condition, and have to fight off something, it really sets you back.

I found that the most difficult thing for me to fight, as far as symptoms went, was the incredible tiredness that comes with cancer.  I had cancer for years before we knew it, and grew progressively more tired as the tumor grew and the cancer advanced unchecked.  Then, when it was diagnosed, the cancer was quite large, and the tiredness grew even worse.  This is a tired feeling like no other I ever experienced, and no amount of rest, or sleep, or whatever, changes it. You awaken not only as tired as before you slept, it seems worsened by it.  Rest does not come easily.

Then, when you begin treatment, the chemo and radiation each produce additional tired feelings.  This all contributes to you being one tired puppy!  And with the tiredness comes more inactivity, since you can barely force yourself to function, or that was the situation in my condition, after having it so long.  Each time you rally, you have to “fight” through that horrible tired and weak feeling, every day forcing yourself to do at least a bit more, until you finally break through it. Then, if you get sick, you are back at square one, and have to begin the whole fight all over again.

For this reason, and because it has become clear to us that my body has been severely affected by the chemo (after this minor surgery and the malfunction of my blood vessels), I want to avoid catching the flu this winter, above all.

 In the past few weeks I have had the feeling inside of being “well,” but did not know why, until I was reading back over my last journal entry made in April, where I spoke of the tiredness that was still with me, and I realized that is the difference… the tiredness has gone!

Oh, I get tired, but it is a good tired feeling, from physical exertion, as I work to strengthen my muscles again.  At the end of each day I am very tired, but that is a good tired, too.  And, in the morning when I arise, I feel rested, and eager to begin a new day; with more enthusiasm (although my body is still saying, whoa…) and plans that more than fill each day.  You cannot imagine what a wonderful feeling that is, and how thankful I am to the Lord, and to all of you who have been praying for me.  Prayer is an awesome, powerful thing, and I have seen it work wonders.  I hope you will all continue to pray for my ongoing improvement in health.

For now I am well content. I have Jim, and our home here, which we really like; I have a few friends locally that I remain in contact with, although I don’t see anyone very often.  I see my children now and then, and grandchildren, and for now, that is enough.  I am so thankful for what the Lord has given me, and hope I am appropriately grateful.

This page was created in the hope it might help take the mystery out of cancer for friends, family, and hopefully, for some of you who have been recently diagnosed with cancer.  With knowledge comes a measure of peace-at least it did for me, and that is why I am publishing this information.  If you are a cancer patient and have any questions you feel I might answer, please feel free to email me and I’ll try to help if I can. I am certainly no authority, I can only speak for myself and my own experiences, and if they can be of use to any of you, I will be pleased

Marcie Foley
Central Oregon
November 2004

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